hey i am 18 and have had cluster headaches since i was in the 7th grade, i am now a freshman in college and i have just been hit with another attack. only problem is i have finals this week and reading is well you know. with me the only thing that relives my pain is opiates such as vicoden or stadol injections, fallowed by a injection of steroid and a round of oral steroids. however i am away from my nerologist and am unable to get these shots until after my exams are over and i manage to drive back home. i was woundering if anyone had tips on dealing with the pain with out being on an opiate for the pain but still be able to focus on an exam for 3-6 hours?

Oxygen at 15 lpm with a non-rebreather mask is #1 for me.

Has your doctor ever given you Imitrex injections to use?

It would be considered somewhat rare to apply opiates to this condition as opiates rarely offer much help to most sufferers. Are you using a neurologist that is familiar with cluster headaches?

yes he is, imitrix causes a allergic reaction, axert is what they also have me on, but it only works about 33% of the time. and my cluster headaches last for hours thus the opiates (the stadol injection knocks me out in 15 min and i get relief for about 12-16 hours), and currently i am in the third week of having this headache. the only problem with stadol is it is highly addictive because it is almost like morphine.......the reason my nerologest gives me the opiates is to kill the pain for the 3-4 days between injections of steroids, i mean it works for me but sitting through my history lecture on china while on pain killers makes it hard as hell to focus on my notes.

Welcome to the site!  Sorry you needed to find it.

If you haven't tried the 02 yet, you must ASAP.  It may provide the relief you're looking for.  Make sure you hit it as soon as you can tell one's coming.

Also, you tried caffeine?  Many find it's a pretty effective abort.  Most use Red Bull - the taurine also helps.

Also, if you haven't tried melatonin yet, that's something to ask your doc about.  It's OTC, helps the sleep cycle, and for many reduces (or eliminates) the night time attack(s).

There are many, many, many drugs out there to try.  I expect you're just time short here, but doesn't sound like you've explored the preventatives much with this neuro?

The problem with the narcotics is that they don't stop the hits from coming.  After your finals, you may want to spend some time on these boards getting familiar with all the med possibilities.

Hope you can get hooked up with some 02 quick - lots of suggestions on how to do it around here if you can't get a quick scrip, a med supply store to provide it and insurance to pay for it.

Good luck!

Laurie

thanks for the info, but as far as prevention medication i have been on atnonal toparal and currently am on topamax 50 mg, do u know if i should ask him about anything else to help prevent the attacks? (i know i spelled the first one wrong cant remeber how it is spelled)

There's a button on the left called "medical info" and "prophylaxis" discusses preventatives.  However, since this information was put up there have been some changes in standards of treatment and research on other meds.  

Most neuros start with a prednisone taper and combine that with verapamil, which is a calcium channel blocker.  But doses are VERY specific to individuals and have a huge range!  Some people do OK with 120mg of verapamil - some people go as high as 960mg or 1200mg.

If that doesn't work, sometimes the verapamil in combination with other drugs works:  lithium works for quite a few people.  

Topomax is an anti-eleptic.  There are a number of these.  A more current version of topomax is depakote, and some people find it works for them where topomax doesn't.  Gabapentin is an older version that works for some people where topomax or depakote didn't.

There are other calcium channel blockers, and quite a few triptans.

CH is as individual as the people that suffer from it, the beast often morphs just to keep everyone on their toes, and the medical community now has a long list of meds to try.

We believed Gary's former neuro knew a lot about CH.  He gave up long before he should have.  We only know that now because of this board and his visit to a Headache Center.  Had we not seen that list of meds that was 2 pages long, we never would have known that having tried 32 meds still left a lot of options!

So.... I still stick with my original suggestion.  After you've finished your finals and the beast lets you celebrate, spend some time here and on the net learning about all the options!  You are your best advocate with any neuro.  :)

Laurie

You are in a bad place with finals right now, HOWEVER, 30 year experience with CH here.

For now, when one is coming on, chug caffeine, lots of it ( strong coffee, energy drinks, red bull), and then exercise like mad, run around the block a couple of times, breathe very deeply right to the bottom of your stomache, keep your energy up and you may keep the intensity of the headache diminished.

Tough it out through the finals, many of us have been there...push your way through and stay in touch with us.

THEN,
If your Neurologist has not mentioned oxygen as a treatment for Cluster headaches, then he is not familiar with treating cluster headaches....period.    It is that simple....25 years ago it was standard practice and it is still the first line of defence today and there are still hundreds of doctors that do not know anything about cluster headaches!

Go to the library after your finals and get an old book called Help For Headaches A Guide To Understanding Their Causes And Finding The Best Methods Of Treatment by Joel R. Saper M.D F.A.C.P. copyrighted in 1983, published by Warner Books with an ISBN of 0-446-34260-2   An absolute must read even though it is dated, but the author is still one of the best Cluster doctors on the continent today.

At 18 years of age opiates and steroids will do nothing good for you in the long run when there are  so many other things to be tried first.
Please give some weight to the experience of the caring bunch of folks on here..you may really find the relief you desire without as many nasty long term side effects.
Paul

MITYRARE wrote on Dec 9^th, 2008 at 11:58pm:

Tough it out through the finals, many of us have been there...push your way through and stay in touch with us.

Ewwwww, it brings me back baaaad memories as my CH was worst until the early 30's.  But Paul is right.......I did tough it out before Imitrex became available, with useless pain killers my Dr. prescribed in desperation to ease my pain.  If you can handle it, try and try to be tough it out and get through.

Please, find the time to get O2 and learn to work with it.  And PLEASE PLEASE know your limit; when you've had enough of the pain, you had enough.  Don't feel like you're a loser.  Sometimes we need to re-arrange our priorities.

ohioterpes wrote on Dec 9^th, 2008 at 5:59pm:

yes he is, imitrix causes a allergic reaction, axert is what they also have me on, but it only works about 33% of the time. and my cluster headaches last for hours thus the opiates (the stadol injection knocks me out in 15 min and i get relief for about 12-16 hours), and currently i am in the third week of having this headache. the only problem with stadol is it is highly addictive because it is almost like morphine.......the reason my nerologest gives me the opiates is to kill the pain for the 3-4 days between injections of steroids, i mean it works for me but sitting through my history lecture on china while on pain killers makes it hard as hell to focus on my notes.

I am so sorry you are in such pain at a difficult time for you anyway. You really do need a break don't you?

When you say your headache lasts for hours and that you are in the third week of having it, due you mean you have the headache pretty constantly for many hours/days without a break from it?

Wendy

An alternative to Imitrex is Ergotomine (Cafergot). It's a vaso-constrictor (like trex) and doesn't have the side effects of trex. It works better for a lot of us without the side effects. It's an OLD drug, but worked BEFORE trex came along. Some of us still use it. (I can't handle trex).

O2 is still the first line of defense for most of us. Used correctly (check the meds page for the proper use) it will usually stop the headache in minutes for about 70% of us - most of the time without any meds.

I hate to be a naysayer, but it sounds like your doc is treating pain - not CH. Narcs are NOT the way to treat CH - just makes you goofey, but doesn't do much for the headache. You need to read up on the treatments on the med page and then be an advocate in your treatment. Topamax is good - I've been on it since 99 (take the whole dose at night before bedtime to avoid side effects), but 50 mg isn't enough to do any good if you're getting hit that bad.

Try some Red Bull at the FIRST sign of a headache - this will sometimes abort the thing before it gets going. Chug a can (don't sip it). And melatonin (12-15mg) before bedtime will help you miss the night hits (most of the time).

Let us know how you're doing.

Hugs BD

<sup>I am so sorry you are in such pain at a difficult time for you anyway. You really do need a break don't you?

When you say your headache lasts for hours and that you are in the third week of having it, due you mean you have the headache pretty constantly for many hours/days without a break from it?

Wendy</sup>

i will get theses headaches for about 3 to four hours 2 to 3 times a day. and the reason for the opiates is maxalt immitrix and about every thing else used for treating the headache brings up side effects just as bad as the headache, they at first thought brain tumor but an MRI an CT scan ruled that out both came up negative. my nero has had me  on some experamental studies, his field is headache prevention and relief. my father knew him when they worked at johns hopkins.

" his field is headache prevention and relief."


and he has not prescribed oxygen yet?  that is very odd.


Paul

i have been on oxygen when i was hospitalized and had an attack and the oxygen did next to nothing, helped a little but nothing major.

Your Neuro should not be giving you opiates. I am assuming that he has diagnosed these as cluster headaches. Usually a headache lasts 30-60min., if you have nothing to combat them and you get hit sometimes 5-8 times a day. The 3-4 hours, 2-3 times a day seems strange.

It appears the Topomax is doing nothing and all the opiates is doing is knocking you out. I would taper off everything (under a doctors supervision) have him write you a script of 02 with a regulator of at least 10-15 lpm and a non rebreathable mask.

Keep a small tank outside the classroom in your car. When you feel one coming run outside and start breathing from it. Mine would back off in 5-10 minutes.

Thats my advise to you.

I'm new to all this too. I really feel for this guy who has to struggle through such pain at a really important time.

I just wanted to mention how fantastic this site is for me. I really struggle with my GP when trying to get what I need after being mis-diagnosed for 8 years. I have to tell him what I have read on here and ask him to prescribe it, basically. Really poor level of care and interest.

I had a huge attack this morning and rang a local hospital to ask for o2 and they refused, and told me to ring an ambulance which would take me miles away to an A+E department. It's like living in the 1800's if you don't live in a city. Soooooo many people in the health professions still do not have a clue what CH is.  ::)

Anyway, good luck with your exams dude. I hope it works out for you, and I'm sure that all the advice will only help you find what you need to get through it.  :)

ohioterpes wrote on Dec 10^th, 2008 at 12:28pm:

i have been on oxygen when i was hospitalized and had an attack and the oxygen did next to nothing, helped a little but nothing major.

Generally in the hospital, they are not administering the proper flow rate required for any results with Cluster headaches.

[color=#000000]
Jimi wrote on Dec 10^th, 2008 at 2:51pm:

Your Neuro should not be giving you opiates. I am assuming that he has diagnosed these as cluster headaches. Usually a headache lasts 30-60min., if you have nothing to combat them and you get hit sometimes 5-8 times a day. The 3-4 hours, 2-3 times a day seems strange

Does not seem strange to me at all.  Exactly describes my experience and was the reason why my diagnosis took so long for the neuros to figure out. These CH can come in slightly different variations. As I have mentioned, I have another neurological dimension to mine that make me resistant to most meds. Could possibly be the problem in this case as well. Sometimes the neuros resort to opiates when they feel defeated in order to provide some form of relief. there are way too many tools in the tool box yet to try before resorting to opiates and ending up in a rebound cycle in perpetuity and dependancy issues....Damn...  high flow O2 with non rebreather mask under supervision of a CH person that knows what they are doing needs to be absolutely ruled ineffective before going on to other meds.[/color]

Paul

I am afraid I am with Jimi on this one. CH does differ between individuals of course, but 3-4 hour attacks, several times a day, every day suggests other headache types more readily than CH.

Also, I understand GP's getting desperate and prescribing opiates and narcotics, they tried to with me before I "educated" them but they are almost never a good answer to a headache condition.

ohioterpes- I don't want to sound patronising and old, but you are very young to be taking such powerful and habit forming drugs every day and they themselves could even be creating some of the pain.

Would it be possible to go back to square one and describe your headaches, what the pain feels like to you and where exactly it is as descriptively as you can? what helps you when you have them, any other symptoms you get?

We can't diagnose here but we could steer you towards some other information if there is a chance of some other treatments working instead of opiates. I also don't want to be rude about your neuro but if they think opiates and normal flow rate 02 are the answer for you, I would seriously doubt how clued up they are.

Wendy

Not only are opiates like Stadol and Vicodin NOT a good idea due to addiction, but they don't help this kind of pain.  They DO....cause rebound headaches from hell though.

3 to 4 hour HA's are certainly not normal.

Please try the Melatonin before bedtime (can be found in the vitamin aisle of any market..and strong coffee and energy drinks until you can get to a Dr. who understands how to diagnos and treat you.  


If you do have CH....oxygen is the first thing I would ask him to prescribe as others have already told you.  

Good luck on those finals..

pubgirl wrote on Dec 10^th, 2008 at 5:45pm:

I am afraid I am with Jimi on this one. CH does differ between individuals of course, but 3-4 hour attacks, several times a day, every day suggests other headache types more readily than CH. Also, I understand GP's getting desperate and prescribing opiates and narcotics, they tried to with me before I "educated" them but they are almost never a good answer to a headache condition. ohioterpes- I don't want to sound patronising and old, but you are very young to be taking such powerful and habit forming drugs every day and they themselves could even be creating some of the pain. Would it be possible to go back to square one and describe your headaches, what the pain feels like to you and where exactly it is as descriptively as you can? what helps you when you have them, any other symptoms you get? We can't diagnose here but we could steer you towards some other information if there is a chance of some other treatments working instead of opiates. I also don't want to be rude about your neuro but if they think opiates and normal flow rate 02 are the answer for you, I would seriously doubt how clued up they are. Wendy

Wendy, I am of the same thought as you on this one. The CH diagnosis may not be iron clad considering the treatments administered ( i would get a second opinion from a neuro starting from scratch..no disrespect to the neuro here but in the interest of the young lads health) I hope his parents sift through these posts with him and consider some of the options for best long term care and health.

That being said....there are cases where these headaches do manifest for long durations....mine first lasted 3-4 hours all during my early twenties....the best neuro in the country were assembled and consulted on my case to run tests, diagnose and study me for years...eventually the headaches morphed into "classic" attacks of 45 min to 1 1/2 hour with "instant on" and almost "instant off" speed several times throughout the night time in my late twenties and early thirties, it was also during this time that the electric shock neurological shooting pains throughout my cranium known as "Tic" became a worse terror than the CH since it became more unpredictable ( at least i could predict the CH), In my 40s the length of my CH attacks again began to elongate into regulary over 2 hours and now occassionaly i get the dreaded "long attack" of my youth.
Non typical to be sure..Cluster....so says all the neuros and university med neuro students that have treated me and studied me over 30 years.
I'll just call them headaches

The young lad needs a second opinion and proper O2 instruction to evaluate its effectiveness (or not).

Paul

My daughter started her senior year of college like you. I am so sorry for your struggle. Even when she wasn't getting hit, she was tired from the interuptions in sleep patterns and worrying about when and where the next time would be. If you need to take any incompletes, it's not the end of the world. She spent Jan. over Christmas break making up work. Don't compromise the quality of your work if possible.

Occasionally she was put on a dhe drip both in and out patient. This usually bought her a a week of pain free time. 50 mg of topomax is low and may need to be SLOWLY increased if you are tolerating it. Depekote works well although side effects were hard on Lisa. She also always carried a can of redbull in her back pack. Her school was small and she could get to the campus infirmary quickly. They understood to turn up the o2 fast and had her mask ready.

Be sure to communicate with your school. You have been give alot of great advice. I spent at least 2 weeks at Jefferson Hospital, which is a leading headache center in Philadelphia. I saw way too many people trying to detox from opitates. The relief is temporary. Be careful!!

Good luck with school!!!

Charlotte

i recommend you get a dr note to your prof and retake the finals at a later date b/f next semester. I can't imagine trying to focus on a final let alone having to read.

well it is always located on the frontal right side of my head. if you where to take two polls and shove one in my right temple and one in my eye where the two intersect is where the pain is located.

the pain itself is as if a spike has been drilled into my head that is red hot and then wiggled around. i cant stand lying down when they happen i need to rock or if it is night go out and look at the stars to attempt to take my mind off of the pain.

and as far as the pain killers no matter the headaches i would be on them i was in a car crash about a year ago and have several back problems, i broke my lower back in this crash and have been on the pain killers........i would take the back pain over the headaches any day of the week.

It could be that the pain killers are extending the duration of the attacks...

Would you be willing to forgo the pain killers and ask your doc for O2 as an abortive with the correct mask and flow rate?  Perhaps for the back pain you could take a stronger naproxem sodium (if they have such a thing) as it's less likely to cause rebounds. :-/

rebounds have happened but they will last only a day or two, on top of this my medication intake is regulated, and the stadol injections i have to go to the doc to get when the headaches reach a horrible peak.

I get my attacks in groups also. Usually 1-3-5-7 AM, 1-3 PM, and 5-7-9 PM… My clusters last 45-60 min W/O O2 and 10-20 min with O2.

I am wondering if you mean to say you have a group of clusters in 3 hours or a continuous HA for 3 hours?

If you have finals coming, a prednisone taper would get you through. It is really the only way I can get a two week vacation from my friend (CH).

Here’s hoping you can get a break for your finals,

Roland. ;)

ohioterpes, I understand about the doctor having to regulate your meds, but what I'm asking, is if you can discuss with him/her about getting off the pain killers??

i have them for 3 hours straight or longer

ohioterpes wrote on Dec 11^th, 2008 at 9:46pm:

i have them for 3 hours straight or longer

...then some will say they cannot be Cluster Headaches...and really a second opinion of a neuro is always a great idea when dealing with serious headaches.

...however...back in the early 1980s Cluster were defined as lasting from 15 minutes to 2 hours...and when I was diagnosed (2 1/2 -3 hours regularly and occassionaly longer) there were only 3 documented ( by a neurologist associated with a teaching/research hospital and university afiliation) Canadian patients having cluster headaches of a duration beyond 2 hours and I was told that there were some numbers inthe USA according to my Neuros colleagues there.  The theory was that in my case that i was probably experiencing multiple CH in succession without any perceptible downtime between. All other symptoms were/are spot on. Scans/electrodes etc proved there were crests and valleys of intensity that I could not percieve during the long beastly dances which still visit too often and stay longer than welcome.

Best of luck with the finals...get as much rest as you can, and let us know how you make out with your Doctor visits.

Paul

ohioterpes wrote on Dec 11^th, 2008 at 9:46pm:

i have them for 3 hours straight or longer

You still have not answered my question...

 " and the reason for the opiates is maxalt immitrix and about every thing else used for treating the headache brings up side effects just as bad as the headache,  "


  At the top of this board is a subject that Svenn asked DJ to sticky or "LOCK"  because it was important enough to do so.   Please read this post by Svenn.



also?  yes please answer Melissas question.  I'd like to know too.  

Please understand something about this site...There are so many people willing to help you it will blow your mind.  PM someone...ask someone here who you feel comfortable with..to e-mail you.  Ask questions and do NOT be afraid if it may sound stupid to you.   No question you may have is one that hasn't been discussed here before...Honest.

This site exists to help.




    Linda

Fellow college student here!  Welcome to your new family!  :D

FIRST:  get up first thing in the morning and march your butt down to your school's Office of Disability Services (or whatever they call it)  and request IMMEDIATE HELP.  This is a disability, and as such you can get all kinds of special accomodations; all I needed was a diagnosis from my doctor.  

SECOND: get on the phone to your neuro and have him send you a letter to give to your professors explaining the severity of this disease and what to expect from you.  They need to have that on file in case someone complains about them giving you special treatment.  I really hope you have already done both of these!!  

My fiance is a professor, and they are human too  ;D  But without proper documentation from your doctor/disability office, it puts them in a difficult spot.  but if you've been a good student up until now   ;) then then I'm sure they will give you extra time- or at least take an incomplete!

I also have strange symptoms and 3 or 4 hour attacks- but this also triggers migraines from hell, so it's hard to tell what's going on because I'm constantly in pain.  Also, I agree with the others that you should try every other medication before using the hard stuff...BUT, that being said, O2 doesn't work for me either, but vicodin does (but I'm allergic, so can't take it.)  Amitryptaline helped, tho- have you tried that?

You can do it...push on through...I'm just now getting out of a 6 month long cycle, so I had it the whole semester.  If I can make it, you can too!  And we're all here to give you support!!  :-*

Oh, I forgot- does your school have a student health center?  If it does, then you should have your neuro get in contact with them and get one of their doctors to work with you (sounds like you moved away from home for college?)
AND get with your school counseling office and get a therapist.  You really need to have someone on their staff working with you, even if you don't think you need therapy, because going away to college is a tough enough transition without the beast tagging along, and you need someone in your corner on school staff who can coach you and be a liason between yourself and the school...I am seeing one who specializes in chronic pain, and he has been a godsend as far as helping me to deal with professors and advocating for me...they will know exactly how to handle this situation.  I hope I don't sound patronizing, but I know firsthand how agonizing your situation is and you don't have any time to fool around on this...good luck again!!  :)

that might be  a good idea radar.

ohioterpes, if you are near central ohio i can help you get a big bottle of o2 without a script. you will a  regulator though.

damn. what a bad time to be in a cycle.

if you need help please don't hesitate to send me a pm ;)

this place is just south of down town columbus a stones throw from i 71

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i have a van if you need help getting a bottle home.

What Under The Radar said is right on. This is exactly what Lisa did and she graduated on time. She only had one professor that wasn't very empathetic. Her campus dr made an appt. with a nuerologist and in the mean time put her on indometacin (SP) to rule out other conditions.  It's not easy, but it is possible! Like he said too, I don't want to sound patronizing either but with a good plan of action all is possible. She was even able to saty in orchestra and swim on her college team, not easy but it kept her going. Good luck. Use us!!

Charlotte

sorry i have not been able to respond to all the posts i have been studying when i can......as far as getting  off of the pain meds i doubt that will be possible, as of right now they are the only sure fire way to help me get through the day. when i get out of school i will deffently get the forums filled out at m schools office, but as far as these finals i have no choice but to take them grades due on the 19th and i am double majoring in history and social studies education 5-12 so i cant miss any classes to stay on track.....i have an appt with my doc at 4 on tuesday i start my last final at 12:45 so i am going to rush through it and try and speed home...my fastest time is 2 hours and 45 min but i will have to go faster to make it......i will talk to him about all treatments out there when i meet with him.....and thanks for all your help so far.

ohioterpes wrote on Dec 12^th, 2008 at 7:35pm:

sorry i have not been able to respond to all the posts i have been studying when i can......as far as getting  off of the pain meds i doubt that will be possible, as of right now they are the only sure fire way to help me get through the day. when i get out of school i will deffently get the forums filled out at m schools office, but as far as these finals i have no choice but to take them grades due on the 19th and i am double majoring in history and social studies education 5-12 so i cant miss any classes to stay on track.....i have an appt with my doc at 4 on tuesday i start my last final at 12:45 so i am going to rush through it and try and speed home...my fastest time is 2 hours and 45 min but i will have to go faster to make it......i will talk to him about all treatments out there when i meet with him.....and thanks for all your help so far.

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        Kinder gentler potter

   I don't want to browbeat you, but I want to make sure you understood me- if you get a letter from your neuro and take it to your professors NOW, you might get some extra time to take the final, or at least they should give you an "I".  I know how it is to cram for finals, so even if one or two of them gave you a few extra days it could really help your stress level and make a world of difference!  
   And anyway, profs usually have a few days to get grades turned in after finals; I know my man has a little over a week after the last final to grade his tests, so he's even had students take finals or turn in work a week later (but only with really good reasons- like CH!!)

Quote:

as far as getting  off of the pain meds i doubt that will be possible, as of right now they are the only sure fire way to help me get through the day.

 ::) Narcotics are sure-fire all right.  A sure-fire way to addiction and rebound headaches.  I'm not a Doctor but I have been chronic for 21 years now and I believe that gives me just a tad of experience in this.  I would bet anything I own...if you are truly experiencing 3 to 4 hour headaches..it is BECAUSE of the narcs.  

at my university my final is on the 16th and final grades are submitted on the 18th....the goal is to gut it out for 4 more days then be done for month and hope my cluster fades.

This question...


wrote on Dec 10^th, 2008 at 8:40pm:

I am wondering if you mean to say you have a group of clusters in 3 hours or a continuous HA for 3 hours?

Roland. ;)

I feel so bad for you   :(

But my SO professor had a good point that you may not know yet- professors have an official school deadline for turning in grades, BUT they usually give a "personal" deadline for papers, makeups, etc. so they don't get a barrage of stuff at the last minute; it's up to THEIR discretion when they will stop accepting work, but that can be very different from when the SCHOOL deadline for grades is.  Think about it- my man has over 700 essay exams to grade; there's NO WAY he could do it in two days!!  :D

I asked him, would this be a situation where a prof would extend the deadline?  He said Hell Yeah!!  

PLEASE do yourself a favor and go to your profs with a letter from your doc and print out some info on Clusters and ask them for more time.  

And do you know what an "Incomplete" is all about?  It basically just suspends the final outcome of the course and gives you extra time (sometimes two years) to finish it.  What school do you go to?  I will look up their policy on all of this for you!  

Hang in there!  ;)

Terribly sorry I'm late but better late than never right? Anyways, ohioterpes, I'm Felicia and I'm a supporter here on CH.com. My dad has had CH since I was 7 and now 10 years later I'm here to help all the Cluster "kids" the best way I can. Mostly I talk to the teens here and help them get to the right people on the site so that they can find the best solution for them. Also I'm here if you want to talk, bitch, cry, rant, etc. Linda told me about you're post and that's how I happened to find you. My point is, instead of being dead set on using narcotics may not be the best choice. I'm not here to tell you what to do because nobody likes a know it all. I'm just here to help. Some of the people here are good people that have been fighting this beast since before either of us were thought of. I realize you're under a lot of stress right now but try to listen to what some of us have to say. Linda is an amazing person and a family friend, Mel is an angel, cash5542 is a great person, and though I don't know Radar very well, what I've read from posts, he really knows what he's talking about. I'm not saying take everything they say to heart. But at least give them a chance. You might find there is a different way. That's all I can say. Hope you fight this beast the best way possible and welcome home my friend. There are people here who care. Don't ever forget that.

Broken

ohioterpes wrote on Dec 13^th, 2008 at 12:56pm:

at my university my final is on the 16th and final grades are submitted on the 18th....the goal is to gut it out for 4 more days then be done for month and hope my cluster fades.

There is alot more the school can do for you. The grade timing is not set in stone.The consequences of an Incomplete are that if you are eligible you can't make the honor role because your GPA isn't finished. The report card comes as incomplete and it's corrected when done. Lisa also couldn't go on her swim training trip to Florida either because of incompletes. Lisa's senior year was pure hell, requiring hospitalization that left all of this nonnegotiable. She walked at graduation and received an empty diploma. Then she came home and finished her 90 page paper on the Holocaust. We also spent alot of time at Jefferson hospital straightening out meds and getting this under control.

I can relate to this more than you know. Lisa has a BA in History/Classics and iwill  finish her MAT in 7-12 History Ed in May. She is wrapping up this semester now but I'll be sure to have her write to you soon.

Good luck!! Remember what I said earlier, communication is the key in all of this. Professors can be so empathetic and patient when they understand and know what's going on.

Charlotte

I also wanted to add that maybe you can get through this semester but you still have 7 more. When a plan is set into place and a cycle starts you can kind of step back and take care of your head rather than try to scurry around keeping up, getting hit and not sleeping. Think aboutthe future of the other semesters coming up as well.

I get 3 hour attacks sometimes. Not often, thankfully, but they are clusters.

You've been given good advice here, hon. The pain meds are not the best treatment. Repeated use of steroids are not the best treatment, either. Both will have long term effects that will likely make things worse.

When you get through finals, PLEASE look for another doctor. Do your research here, we have a pretty good handle on what works.

Painfree and 4.0 wishes to you, nani

Linda_Howell wrote on Dec 13^th, 2008 at 12:55pm:

Quote: as far as getting  off of the pain meds i doubt that will be possible, as of right now they are the only sure fire way to help me get through the day.  ::) Narcotics are sure-fire all right.  A sure-fire way to addiction and rebound headaches.  I'm not a Doctor but I have been chronic for 21 years now and I believe that gives me just a tad of experience in this.  I would bet anything I own...if you are truly experiencing 3 to 4 hour headaches..it is BECAUSE of the narcs.

I'm amazed at the amount of disrespect here. Don't you dare claim experience when you're only talking about CH.

This person said they would still be on the medication even if they didn't have CH due to a unrelated chronic pain problem.

I have LIVED with chronic pain. And it's so insulting when someone pulls the "pain meds are addictive always" crap. Do you know how much that hurts when you are only on them because otherwise, you would have a hard time moving?

Don't give me shit about Naproxen, that won't help you if what you need ISN'T an anti-inflammatory. If this person is on opiates? Naproxen OBVIOUSLY isn't going to fix them. Their doctor likely TRIED everything else before going to opiates.

There is a HUGE difference between addiction and dependance.

If this person was just choosing pain medication, rather than trying to find something else, sure, you'd have a point.

I'm not saying that pain medications are a good choice for CH. But I think it's fucking wrong for someone to be MOCKED, or told they'll become an addict over something that they cannot help!

I'm sorry for anyone who took offense to this, but, it really bothered me. We may have an incredibly painful condition, but the pain they're on meds for? Is just as bad in it's OWN way.

Mystina

Pixie-elf wrote on Dec 15^th, 2008 at 10:59pm:

Linda_Howell wrote on Dec 13th, 2008 at 12:55pm: Quote: as far as getting  off of the pain meds i doubt that will be possible, as of right now they are the only sure fire way to help me get through the day.  ::) Narcotics are sure-fire all right.  A sure-fire way to addiction and rebound headaches.  I'm not a Doctor but I have been chronic for 21 years now and I believe that gives me just a tad of experience in this.  I would bet anything I own...if you are truly experiencing 3 to 4 hour headaches..it is BECAUSE of the narcs.   I'm amazed at the amount of disrespect here. Don't you dare claim experience when you're only talking about CH. This person said they would still be on the medication even if they didn't have CH due to a unrelated chronic pain problem. I have LIVED with chronic pain. And it's so insulting when someone pulls the "pain meds are addictive always" crap. Do you know how much that hurts when you are only on them because otherwise, you would have a hard time moving? Don't give me shit about Naproxen, that won't help you if what you need ISN'T an anti-inflammatory. If this person is on opiates? Naproxen OBVIOUSLY isn't going to fix them. Their doctor likely TRIED everything else before going to opiates. There is a HUGE difference between addiction and dependance. If this person was just choosing pain medication, rather than trying to find something else, sure, you'd have a point. I'm not saying that pain medications are a good choice for CH. But I think it's fucking wrong for someone to be MOCKED, or told they'll become an addict over something that they cannot help! I'm sorry for anyone who took offense to this, but, it really bothered me. We may have an incredibly painful condition, but the pain they're on meds for? Is just as bad in it's OWN way. Mystina

Shhhhhhhh.

Kinder gentler Potter

Remember everyone, we're not doctors, and there ARE cases of CH headaches that last longer than the average- I'm one of them.  

Average (noun):
 1. (arithmetic) The arithmetic mean.

Arithmetic mean (noun):
 1. The measure of central tendency of a set of values computed by dividing the sum of the values by their number; commonly called the mean or the average. The average of 10, 20 and 24 is (10 + 20 + 24)/3 = 18.

Peace, y'all!  -Paige

just FYI i finished my finals, and made my doc appt........increase in my prevenative medication by x3 and as far as the pain killers are concerned, if i am presented with two options the first being walk and do things i normally can do, as well as giving me relief from my CH. the second option is walk slow and hunched over with debilitating pain and a CH attack that is extreamly painful i think like most people i would take option number one.

ohioterpes wrote on Dec 17^th, 2008 at 12:52pm:

just FYI i finished my finals, and made my doc appt........increase in my prevenative medication by x3 and as far as the pain killers are concerned, if i am presented with two options the first being walk and do things i normally can do, as well as giving me relief from my CH. the second option is walk slow and hunched over with debilitating pain and a CH attack that is extreamly painful i think like most people i would take option number one.

Glad you made it through the finals.

We are all here for pain relief.
How we get it is how we differ.
CH neuro specialists can do it without narcotics.
It is a choice.
You and you doctor have the choice to make.
I won't judge your decision no matter what method of relief you choose, whether it be addictive, or even illegal....it is your pain.
O2 is worth a try in my opinion

Paul

ohioterpes wrote on Dec 17^th, 2008 at 12:52pm:

just FYI i finished my finals, and made my doc appt........increase in my prevenative medication by x3 and as far as the pain killers are concerned, if i am presented with two options the first being walk and do things i normally can do, as well as giving me relief from my CH. the second option is walk slow and hunched over with debilitating pain and a CH attack that is extreamly painful i think like most people i would take option number one.

I'd have to disagree with you on that one. Narcotics, but for very intractable cases, have little or no application in the treatment of cluster headaches. If you are using Narcotics you may also be at higher risk of "rebound" headaches - particularly if you've been taking them for awhile. People don't get addicted to Narcotics because they make you feel good all the time. They get addicted when taking them is to simply feel less bad. They present a vicious circle to the user and invite you to play.

You need to be your own advocate - and if you can't you need to find someone who will read up and work for you with your treatment.

the pain meds help both the chronic back pain and CH because my CH is not typical 15-35 min attack, it is a 3-4 hour attack 2-4 times a day. so it is not hard to put two and two together and see that CH and chronic back pain can be treated with the same medication it is best to do so.

ohioterpes wrote on Dec 17^th, 2008 at 2:58pm:

the pain meds help both the chronic back pain and CH because my CH is not typical 15-35 min attack, it is a 3-4 hour attack 2-4 times a day.

I don't think a 15-35 min is a typical CH attack.  They are usually longer than that, IMO.


Quote:

so it is not hard to put two and two together and see that CH and chronic back pain can be treated with the same medication it is best to do so.

I have to disagree with this assumption.  I don't see how treating CH with pain meds is the best to do.  Narcotics may, just MAY be making your CH's last longer than they should.  Did you ever think of that??

Of course, you're free to do what you want, but I just hate to see someone suffering needlessly when there are possible alternatives to narcotics that can be tried. :-/

Of course, you have to be willing to try...

Narcotics are likely causing the headaches to be longer and/or more intense that they may otherwise be:

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Laurie

Pixie-elf wrote on Dec 15^th, 2008 at 10:59pm:

Linda_Howell wrote on Dec 13th, 2008 at 12:55pm: Quote: as far as getting  off of the pain meds i doubt that will be possible, as of right now they are the only sure fire way to help me get through the day.  ::) Narcotics are sure-fire all right.  A sure-fire way to addiction and rebound headaches.  I'm not a Doctor but I have been chronic for 21 years now and I believe that gives me just a tad of experience in this.  I would bet anything I own...if you are truly experiencing 3 to 4 hour headaches..it is BECAUSE of the narcs.   I'm amazed at the amount of disrespect here. Don't you dare claim experience when you're only talking about CH. This person said they would still be on the medication even if they didn't have CH due to a unrelated chronic pain problem. I have LIVED with chronic pain. And it's so insulting when someone pulls the "pain meds are addictive always" crap. Do you know how much that hurts when you are only on them because otherwise, you would have a hard time moving? Don't give me shit about Naproxen, that won't help you if what you need ISN'T an anti-inflammatory. If this person is on opiates? Naproxen OBVIOUSLY isn't going to fix them. Their doctor likely TRIED everything else before going to opiates. There is a HUGE difference between addiction and dependance. If this person was just choosing pain medication, rather than trying to find something else, sure, you'd have a point. I'm not saying that pain medications are a good choice for CH. But I think it's fucking wrong for someone to be MOCKED, or told they'll become an addict over something that they cannot help! I'm sorry for anyone who took offense to this, but, it really bothered me. We may have an incredibly painful condition, but the pain they're on meds for? Is just as bad in it's OWN way. Mystina

Easy there Mystina -- his first four posts don't even mention any chronic pain issue that was leading to the Narcotics usage. Even when he brings up the chronic pain he offhands the reference regarding an accident from a couple of years ago.

He has asked about CH. In his first several posts he makes it clear that his doctor has given him the prescription for the narcotics FOR HIS CH. All anyone has done has said is that Narcotics are not a typical treatment for CH. Do some people use them? Sure, but the advice that has been given, and the feedback given is, in many cases, from first hand experience in dealing with the backside of narcotics related issues. So, easy with the feelings being hurt, eh?

At his age, having a narcotics habit for chronic pain isn't probably a great long term approach. If that hurts your feelings I'm sorry - I'm not looking to hurt feelings but the guy came here looking for feedback. It isn't always the answer he's going to be looking for, nor are we all counselors.

Scott

I'm not talking about his first few posts. I'm talking about Linda's response afterwards.

That's what was innapropriate. Telling him he'll be an addict after he stated he would already have to be on it for another painful condition, was what was jerkish.

And you're right, you aren't counsellors. You're not pain management doctors either. Telling him that it may make it longer is fine, but harping on the addict shit, isn't right.

Does he take the pain meds, be able to function and walk around normally, or....

Stop the pain meds and become bedridden?

When you have an injury that severe, that is your choice.

He even stated that was the choice he had. More than likely? His doctors decided that it was easier to treat it like this, since he was already going to have to take it.

It doesn't always become a habit, if you were a pain management doctor, or someone who had been in it long term, you would comprehend that.

So, what would YOUR choice be?

Be able to function enough to have a life, even if you had to suffer with the CH a little longer than normal....

Or be stuck in bed, in even more pain due to the fact you've got a lot more pain on TOP of your CH?

ETA: If you want to see the post where he mentioned his back problem, it's at the bottom of the first page.

Her post was on the second page.

Quote:

That's what was innapropriate. Telling him he'll be an addict

It wasn't inappropriate at all because  I never said he'll be an addict.  I said it was a sure-fire way to addiction.  When you have an hour...let me tell you about my son Daniel.  No really!!!!!!!!


I wish you'd go back and count the many on this thread (Not to mention countless others over the years) who have stated the EXACT same thing that I have.  

I also said I was not a Doctor but I believe that being chronic for 21 yrs. gave me experience in CH.  I stand by that statement 100%  More people have been helped here in the last 10 yrs. by those of us who are not Dr.s but have experience in this condition of ours that it would boggle the mind.

Narcotics can and do CAUSE  addiction.  I don't know how anyone can argue with that.   :(    Over the last 10 yrs. I've been here,  MANY, MANY,  MANY... people have come to the conclusion on their own... that they can also cause rebound HA's from hell.

I think thou dost protest too much?  I wasn't trying to hurt anyone's feelings..I was offering a warning just like if someone told me they were taking 8 shots of Trex every day....I, and others...would tell them of the risks and try to warn them.


::)

Oh good lord,

Why do we get into this ridiculous narcotics conversation every few months?  It escalates and escalates until someone finally says that yes, they do work for about 20% of people but they should be used as a last resort for lots of reasons, and then they link to all of the places that say exactly that. In the mean time the person's question never gets properly answered.

In this case, finals are over and now would be a good time to try and find alternatives. If Imi doesn't work for you or seems to make things worse, this is going to sound strange but ask for a smaller dose. If I take a full dose it immediately makes things worse, then someone told me the sensations I described were symptoms of overdose and to try less. 1/4 of a syringe works best for me, but I still avoid it because it causes rebounds for me for the following 3 days, the way that narcotics seem to cause rebounds for most of the people here. That being said, if I have an event that is a few hours long and I need relief I can take the Imi and deal with the consequences later.

Another option is to take less vicodin, enough to dull the pain a bit but not get rid of it, with LOTS of energy drink. I recommend the giant cans of Monster energy drink that you can find in convenience stores. They're kind of expensive, but two of them will get you through 8 hours with nothing more than minor shadows.

But now that it no longer matters, research the treatment protocols and see if your doc can prescribe something else for you, something that doesn't have the dangers of narcotics.

ohioterpes wrote on Dec 12^th, 2008 at 7:35pm:

sorry i have not been able to respond to all the posts i have been studying when i can......as far as getting  off of the pain meds i doubt that will be possible, as of right now they are the only sure fire way to help me get through the day. when i get out of school i will deffently get the forums filled out at m schools office, but as far as these finals i have no choice but to take them grades due on the 19th and i am double majoring in history and social studies education 5-12 so i cant miss any classes to stay on track.....i have an appt with my doc at 4 on tuesday i start my last final at 12:45 so i am going to rush through it and try and speed home...my fastest time is 2 hours and 45 min but i will have to go faster to make it......i will talk to him about all treatments out there when i meet with him.....and thanks for all your help so far.

        Opiates and a fast car. Fuckin brilliant.





                Kinder gentler Potter

Pixie-elf wrote on Dec 17^th, 2008 at 6:08pm:

I'm not talking about his first few posts. I'm talking about Linda's response afterwards. That's what was innapropriate. Telling him he'll be an addict after he stated he would already have to be on it for another painful condition, was what was jerkish. And you're right, you aren't counsellors. You're not pain management doctors either. Telling him that it may make it longer is fine, but harping on the addict shit, isn't right. Does he take the pain meds, be able to function and walk around normally, or.... Stop the pain meds and become bedridden? When you have an injury that severe, that is your choice. He even stated that was the choice he had. More than likely? His doctors decided that it was easier to treat it like this, since he was already going to have to take it. It doesn't always become a habit, if you were a pain management doctor, or someone who had been in it long term, you would comprehend that. So, what would YOUR choice be? Be able to function enough to have a life, even if you had to suffer with the CH a little longer than normal.... Or be stuck in bed, in even more pain due to the fact you've got a lot more pain on TOP of your CH? ETA: If you want to see the post where he mentioned his back problem, it's at the bottom of the first page. Her post was on the second page.

 Linda's response is spot on.

      Kinder gentler Potter

Katherinecm wrote on Dec 17^th, 2008 at 8:17pm:

Oh good lord, Why do we get into this ridiculous narcotics conversation every few months?

Probably because over the years we have seen several sufferers here descend into a really terrible physical and emotional state after using narcotics for CH.

A lot of the help given was behind the scenes too as the problems had become really scarily bad where we feared for the person so was never "played out" on here.

I don't want to see what I have seen in the past, so I feel no guilt at all about warning as Linda did.

There is ALWAYS an alternative to narcotics for CH. I don't give a dman if that sounds dogmatic, it is true. The world CH experts do not recommend it for a very good reason. I thought there were many avenues for other chronic pain elsewhere in the body too???


Wendy

Using narcotics for CH is like like hitting a nail with a feather. You can hit the nail all you want and it will still be there in the same position.
It's a quality of life issue. The narcotics take your quality of life the same as CH.
Linda is correct. And I thank her for her comment. Ditto
the bb

I'm not talking about using narcotics for CH.

That's completely beside the point.

The point is, this person has to use them for a BACK INJURY. Sure, he can find alternatives for the CH, but unfortunately, he may not be able to find alternatives for his back.

So, again, what would you choose?

A. Being able to function with most of the back pain gone.
B. Not being able to function at all.

You're all IGNORING the fact it's primarily for back pain. Or do you just not care because it's not CH pain?

DEPENDANCE is different from addiction. Unless 10 different pain management doctors are wrong... There is a FINE line between dependance and addicition.

If you want to claim it's the same, then everyone who takes Verapamil and has to be tapered off is 'addicted.' Same with steroids. Same with every other medication.

Addiction is where you CRAVE it. If you misuse your medication? Yeah, you're gonna get addicted. If you use it to escape your pain? Yes, you're going to get addicted! If you're lying to your doctors about how much you're using... YES, you will get addicted! And no one should be SHOCKED at the outcome in ALL of those cases. Because you're asking for it when you misuse it.

There is a reason I never faced addiction problems when I was on pain medication. A very good reason. I never misused it, and the pain management doctors made sure that I was only given enough to where I could function, and move through the day. This means my body used ALL of it up, and there was no way for me to get high off of it. (I didn't want to, in the first place.)

Pixie-elf wrote on Dec 17^th, 2008 at 9:12pm:

I'm not talking about using narcotics for CH. That's completely beside the point. The point is, this person has to use them for a BACK INJURY. Sure, he can find alternatives for the CH, but unfortunately, he may not be able to find alternatives for his back. So, again, what would you choose? A. Being able to function with most of the back pain gone. B. Not being able to function at all. You're all IGNORING the fact it's primarily for back pain. Or do you just not care because it's not CH pain? DEPENDANCE is different from addiction. Unless 10 different pain management doctors are wrong... There is a FINE line between dependance and addicition. If you want to claim it's the same, then everyone who takes Verapamil and has to be tapered off is 'addicted.' Same with steroids. Same with every other medication. Addiction is where you CRAVE it. If you misuse your medication? Yeah, you're gonna get addicted. If you use it to escape your pain? Yes, you're going to get addicted! If you're lying to your doctors about how much you're using... YES, you will get addicted! And no one should be SHOCKED at the outcome in ALL of those cases. Because you're asking for it when you misuse it. There is a reason I never faced addiction problems when I was on pain medication. A very good reason. I never misused it, and the pain management doctors made sure that I was only given enough to where I could function, and move through the day. This means my body used ALL of it up, and there was no way for me to get high off of it. (I didn't want to, in the first place.)

How about dealing with the CH pain via the safer routes and finding an alternative relief for the back pain which does not risk making the CH worse?
The narcotics sure as hell aren't helping if there are 3-4 hour multiple attacks

W

pubgirl wrote on Dec 17^th, 2008 at 9:20pm:

Pixie-elf wrote on Dec 17th, 2008 at 9:12pm: I'm not talking about using narcotics for CH. That's completely beside the point. The point is, this person has to use them for a BACK INJURY. Sure, he can find alternatives for the CH, but unfortunately, he may not be able to find alternatives for his back. So, again, what would you choose? A. Being able to function with most of the back pain gone. B. Not being able to function at all. You're all IGNORING the fact it's primarily for back pain. Or do you just not care because it's not CH pain? DEPENDANCE is different from addiction. Unless 10 different pain management doctors are wrong... There is a FINE line between dependance and addicition. If you want to claim it's the same, then everyone who takes Verapamil and has to be tapered off is 'addicted.' Same with steroids. Same with every other medication. Addiction is where you CRAVE it. If you misuse your medication? Yeah, you're gonna get addicted. If you use it to escape your pain? Yes, you're going to get addicted! If you're lying to your doctors about how much you're using... YES, you will get addicted! And no one should be SHOCKED at the outcome in ALL of those cases. Because you're asking for it when you misuse it. There is a reason I never faced addiction problems when I was on pain medication. A very good reason. I never misused it, and the pain management doctors made sure that I was only given enough to where I could function, and move through the day. This means my body used ALL of it up, and there was no way for me to get high off of it. (I didn't want to, in the first place.) How about dealing with the CH pain via the safer routes and finding an alternative relief for the back pain which does not risk making the CH worse? The narcotics sure as hell aren't helping if there are 3-4 hour multiple attacks W

In some cases, there aren't alternative routes. If his doctors have prescribed him Narcotics, he very obviously doesn't have a lot of options.

They do NOT like prescribing narcotics long term. Unless he has plenty of money, or great insurance, acupuncture won't be an option. A lot of accidents, you can't use a chiroprator for. Because they could paralyze you.

Physical therapy only does so much. They tried that on me plenty of times.

Pixie-elf wrote on Dec 17^th, 2008 at 9:24pm:

pubgirl wrote on Dec 17th, 2008 at 9:20pm: Pixie-elf wrote on Dec 17th, 2008 at 9:12pm: I'm not talking about using narcotics for CH. That's completely beside the point. The point is, this person has to use them for a BACK INJURY. Sure, he can find alternatives for the CH, but unfortunately, he may not be able to find alternatives for his back. So, again, what would you choose? A. Being able to function with most of the back pain gone. B. Not being able to function at all. You're all IGNORING the fact it's primarily for back pain. Or do you just not care because it's not CH pain? DEPENDANCE is different from addiction. Unless 10 different pain management doctors are wrong... There is a FINE line between dependance and addicition. If you want to claim it's the same, then everyone who takes Verapamil and has to be tapered off is 'addicted.' Same with steroids. Same with every other medication. Addiction is where you CRAVE it. If you misuse your medication? Yeah, you're gonna get addicted. If you use it to escape your pain? Yes, you're going to get addicted! If you're lying to your doctors about how much you're using... YES, you will get addicted! And no one should be SHOCKED at the outcome in ALL of those cases. Because you're asking for it when you misuse it. There is a reason I never faced addiction problems when I was on pain medication. A very good reason. I never misused it, and the pain management doctors made sure that I was only given enough to where I could function, and move through the day. This means my body used ALL of it up, and there was no way for me to get high off of it. (I didn't want to, in the first place.) How about dealing with the CH pain via the safer routes and finding an alternative relief for the back pain which does not risk making the CH worse? The narcotics sure as hell aren't helping if there are 3-4 hour multiple attacks W In some cases, there aren't alternative routes. If his doctors have prescribed him Narcotics, he very obviously doesn't have a lot of options. They do NOT like prescribing narcotics long term. Unless he has plenty of money, or great insurance, acupuncture won't be an option. A lot of accidents, you can't use a chiroprator for. Because they could paralyze you. Physical therapy only does so much. They tried that on me plenty of times.

Sorry but am too old to believe that the only reason Doctors prescribe narcotics for pain is that there is no other option.
Lazy doctors do it all the time here, and patients don't argue, they just take them, and then keep taking them.....

W

It still boils down to quality of life. There are alternatives to pain management beyond narcs,chiro, and the like. Most narcotics are used for acute pain in the short term to improve quality of life. In the long term they only suck the life out of you. In the end, it is a choice that can only be made considering all of the factors involved. The problem rears it's ugly head when the one making the decision is clouded by pain, pain meds ,and initial physical addiction to narcotics.
Doctors providing long term narcotics to relieve pain are not being responsible to their patients. Unless it is a hospice situation.
I hate drugs, all of em.
the bb

pubgirl wrote on Dec 17^th, 2008 at 9:27pm:

Pixie-elf wrote on Dec 17th, 2008 at 9:24pm: pubgirl wrote on Dec 17th, 2008 at 9:20pm: Pixie-elf wrote on Dec 17th, 2008 at 9:12pm: I'm not talking about using narcotics for CH. That's completely beside the point. The point is, this person has to use them for a BACK INJURY. Sure, he can find alternatives for the CH, but unfortunately, he may not be able to find alternatives for his back. So, again, what would you choose? A. Being able to function with most of the back pain gone. B. Not being able to function at all. You're all IGNORING the fact it's primarily for back pain. Or do you just not care because it's not CH pain? DEPENDANCE is different from addiction. Unless 10 different pain management doctors are wrong... There is a FINE line between dependance and addicition. If you want to claim it's the same, then everyone who takes Verapamil and has to be tapered off is 'addicted.' Same with steroids. Same with every other medication. Addiction is where you CRAVE it. If you misuse your medication? Yeah, you're gonna get addicted. If you use it to escape your pain? Yes, you're going to get addicted! If you're lying to your doctors about how much you're using... YES, you will get addicted! And no one should be SHOCKED at the outcome in ALL of those cases. Because you're asking for it when you misuse it. There is a reason I never faced addiction problems when I was on pain medication. A very good reason. I never misused it, and the pain management doctors made sure that I was only given enough to where I could function, and move through the day. This means my body used ALL of it up, and there was no way for me to get high off of it. (I didn't want to, in the first place.) How about dealing with the CH pain via the safer routes and finding an alternative relief for the back pain which does not risk making the CH worse? The narcotics sure as hell aren't helping if there are 3-4 hour multiple attacks W In some cases, there aren't alternative routes. If his doctors have prescribed him Narcotics, he very obviously doesn't have a lot of options. They do NOT like prescribing narcotics long term. Unless he has plenty of money, or great insurance, acupuncture won't be an option. A lot of accidents, you can't use a chiroprator for. Because they could paralyze you. Physical therapy only does so much. They tried that on me plenty of times. Sorry but am too old to believe that the only reason Doctors prescribe narcotics for pain is that there is no other option. Lazy doctors do it all the time here, and patients don't argue, they just take them, and then keep taking them..... W

The thing is, even if a doctor IS lazy? If you're a chronic pain patient, they fully anticipate you to have this problem all of your life. The younger you are, the more problems narcotics long term are considered to cause.

Unless a doctor flat out doesn't care if he gets sued, he WILL think about what to do in the situation. The fact is, the body will eventually get used to vicodin. It'll become tolerant to it.

Then they have to switch you to something else. Eventually you run out of non-triple-script medications and have to go to the big boys.

If it's a short term problem, it's another story. Long term, it's different. At least in Texas it is. And here? If you screw up, your liscense is taken. Even if it's not for something medical related, you might get it revoked.

ETA: If someone wants to list the other options available for pain treatment, please do. Because obviously, I've missed something. I've listed narcs, physical therapy, chiro, acupuncture, and surgery.

Hypnosis only works on some. Acupressure can help but I've never had as much success with it. Just dealing with it isn't an option if you want to live a normal, active life.

Mystina,

While we have continued to interpret what the thread originator was saying or not saying, one of his early posts indicated that the doctor treating him for his CH -- he said, "the reason my nerologest gives me the opiates is to kill the pain for the 3-4 days between injections of steroids".

So, he interjects later that he has chronic pain.... have you ever heard anyone rationalize improper use of narcotics before?

I'm not buying it. He's been given good advice by people who have ridden all sides of this issue. ALL SIDES.

Scott

Pixie-elf wrote on Dec 17^th, 2008 at 9:42pm:

pubgirl wrote on Dec 17th, 2008 at 9:27pm: Pixie-elf wrote on Dec 17th, 2008 at 9:24pm: pubgirl wrote on Dec 17th, 2008 at 9:20pm: Pixie-elf wrote on Dec 17th, 2008 at 9:12pm: I'm not talking about using narcotics for CH. That's completely beside the point. The point is, this person has to use them for a BACK INJURY. Sure, he can find alternatives for the CH, but unfortunately, he may not be able to find alternatives for his back. So, again, what would you choose? A. Being able to function with most of the back pain gone. B. Not being able to function at all. You're all IGNORING the fact it's primarily for back pain. Or do you just not care because it's not CH pain? DEPENDANCE is different from addiction. Unless 10 different pain management doctors are wrong... There is a FINE line between dependance and addicition. If you want to claim it's the same, then everyone who takes Verapamil and has to be tapered off is 'addicted.' Same with steroids. Same with every other medication. Addiction is where you CRAVE it. If you misuse your medication? Yeah, you're gonna get addicted. If you use it to escape your pain? Yes, you're going to get addicted! If you're lying to your doctors about how much you're using... YES, you will get addicted! And no one should be SHOCKED at the outcome in ALL of those cases. Because you're asking for it when you misuse it. There is a reason I never faced addiction problems when I was on pain medication. A very good reason. I never misused it, and the pain management doctors made sure that I was only given enough to where I could function, and move through the day. This means my body used ALL of it up, and there was no way for me to get high off of it. (I didn't want to, in the first place.) How about dealing with the CH pain via the safer routes and finding an alternative relief for the back pain which does not risk making the CH worse? The narcotics sure as hell aren't helping if there are 3-4 hour multiple attacks W In some cases, there aren't alternative routes. If his doctors have prescribed him Narcotics, he very obviously doesn't have a lot of options. They do NOT like prescribing narcotics long term. Unless he has plenty of money, or great insurance, acupuncture won't be an option. A lot of accidents, you can't use a chiroprator for. Because they could paralyze you. Physical therapy only does so much. They tried that on me plenty of times. Sorry but am too old to believe that the only reason Doctors prescribe narcotics for pain is that there is no other option. Lazy doctors do it all the time here, and patients don't argue, they just take them, and then keep taking them..... W ETA: If someone wants to list the other options available for pain treatment, please do. Because obviously, I've missed something. I've listed narcs, physical therapy, chiro, acupuncture, and surgery. Hypnosis only works on some. Acupressure can help but I've never had as much success with it. Just dealing with it isn't an option if you want to live a normal, active life.

Accusing people here of "not caring" is unfair. There are other options but that isn't where the expertise on this board lies. That is what specialist pain clinics are for. Goadsby values what he calls his "expert patients" i.e. us, but we are expert in CH, not the management of body pain.

ohioterpes has what has been diagnosed as CH but that diagnosis looks far from certain, in addition there is chronic other pain. ALL we are saying is that narcotics are NOT the answer for CH and asking them to explore alternatives for BOTH kinds of pain.

Resistance to this and justification for the use of narcotics for both conditions by you or ohioterpesjust worries us

W

Ohioterpes,

I pass no judgment on your pain but I do suggest you read Svenn’s post so as to understand what such a dilemma can proceed to in the end.

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Now if you can spare a minuet to answer this HA question with a bit of elaboration. What you are describing is not typical of cluster attacks in general…


wrote on Dec 10^th, 2008 at 8:40pm:

I am wondering if you mean to say you have a group of clusters in 3 hours or a continuous HA for 3 hours?

Thx, Roland... :)

I'm afraid to even open my mouth on this subject, for fear of alienating myself from the ONLY group of people who understand what I'm going through, and I am truly grateful for this website...BUT...

We are not doctors. period. We don't know this person, or his medical history, or his allergies, or what has and hasn't worked so far for him.  and yet everyone is so quick to tell him he is wrong, wrong, wrong for taking his prescription medication, and the general tone is that narcotics are NEVER okay for CH (or anything else.)

Mystina is right- there's a fine line between addiction and dependency.  Who of us here on this board isn't "dependent" on at least one medication?  And the last time I checked, every one of these CH meds or preventatives we take has its own laundry list of long-term negative side effects to worry about.

The thing that is bothering me is that so many people are being very quick to claim that they know more about this than this kid's doctor.  That is a dangerous path to go down.  I have no doubt that there is a treasure trove of information to be had on this site- but you cannot let that keep people from trying what works for them.  Reread the posts; he's not being told to be careful and do some research, he's being told that his doctor is flat out wrong.  Not a single one of you has even asked for the doc's name so you can look up his credentials.

I love you all like family after only a couple of months, and I'm so glad to be here; but for the record, I myself have 3-4 hour cluster attacks without ever having had anything to give me a rebound, and I have tried everything suggested on this board, and nothing has worked for me except Floricet, which has a mild narcotic.  

And if you talk about quality of life, I cannot BELIEVE that any one of you would consider for one second that living with CH pain is somehow BETTER than being on narcotics.  No offense, but you guys are starting to make me feel like some kind of dirty, low-life junkie, and that's the last thing I need right now when I'm dealing with K9's, finals, and a toddler.

UnderTheRadar wrote on Dec 18^th, 2008 at 12:06am:

I'm afraid to even open my mouth on this subject, for fear of alienating myself from the ONLY group of people who understand what I'm going through, and I am truly grateful for this website...BUT... We are not doctors. period. We don't know this person, or his medical history, or his allergies, or what has and hasn't worked so far for him.  and yet everyone is so quick to tell him he is wrong, wrong, wrong for taking his prescription medication, and the general tone is that narcotics are NEVER okay for CH (or anything else.) Mystina is right- there's a fine line between addiction and dependency.  Who of us here on this board isn't "dependent" on at least one medication?  And the last time I checked, every one of these CH meds or preventatives we take has its own laundry list of long-term negative side effects to worry about. The thing that is bothering me is that so many people are being very quick to claim that they know more about this than this kid's doctor.  That is a dangerous path to go down.  I have no doubt that there is a treasure trove of information to be had on this site- but you cannot let that keep people from trying what works for them.  Reread the posts; he's not being told to be careful and do some research, he's being told that his doctor is flat out wrong.  Not a single one of you has even asked for the doc's name so you can look up his credentials. I love you all like family after only a couple of months, and I'm so glad to be here; but for the record, I myself have 3-4 hour cluster attacks without ever having had anything to give me a rebound, and I have tried everything suggested on this board, and nothing has worked for me except Floricet, which has a mild narcotic.   And if you talk about quality of life, I cannot BELIEVE that any one of you would consider for one second that living with CH pain is somehow BETTER than being on narcotics.  No offense, but you guys are starting to make me feel like some kind of dirty, low-life junkie, and that's the last thing I need right now when I'm dealing with K9's, finals, and a toddler.

This is exactly why I'm upset. You've phrased it all better than I ever could. I take Fiorinal #3 for my migraines, but that's not why I'm upset.

I'm upset because this whole board, except a few people, has completely disapointed me. I'm sad about it. I thought the board was better than this.

I, had honestly hoped that things would change around here, after what I saw during the political season. I'd hoped that wasn't the true face of this board. And now? I honestly feel like an idiot for hoping that it wasn't.

I feel guilty for even having opened my mouth, and brought this horrible crap down on Ohioterpes. If I'd have kept my mouth shut, and stuck to just PMing him, I'm sure this wouldn't have wound up being so unwelcoming for him.

This board is THE only place sufferers have to go. When that's the case, I feel like you should act like it. There should be standards. Expecially with this disease being known to make you want to kill yourself. I see no reason to make anyone feel unwelcomed, until they prove that they are a troll.

It's our responsibility to be kind to anyone, no matter what their choice of treatment is. We can disagree, but telling them that they are wrong for it, is in itself wrong. We shouldn't be judging. We should be offering our hands, saying that even if you choose this, it's okay. Let someone know the risks of any treatment, and then be at peace.

Pixie-elf wrote on Dec 18^th, 2008 at 1:26am:

UnderTheRadar wrote on Dec 18th, 2008 at 12:06am: I'm afraid to even open my mouth on this subject, for fear of alienating myself from the ONLY group of people who understand what I'm going through, and I am truly grateful for this website...BUT... We are not doctors. period. We don't know this person, or his medical history, or his allergies, or what has and hasn't worked so far for him.  and yet everyone is so quick to tell him he is wrong, wrong, wrong for taking his prescription medication, and the general tone is that narcotics are NEVER okay for CH (or anything else.) Mystina is right- there's a fine line between addiction and dependency.  Who of us here on this board isn't "dependent" on at least one medication?  And the last time I checked, every one of these CH meds or preventatives we take has its own laundry list of long-term negative side effects to worry about. The thing that is bothering me is that so many people are being very quick to claim that they know more about this than this kid's doctor.  That is a dangerous path to go down.  I have no doubt that there is a treasure trove of information to be had on this site- but you cannot let that keep people from trying what works for them.  Reread the posts; he's not being told to be careful and do some research, he's being told that his doctor is flat out wrong.  Not a single one of you has even asked for the doc's name so you can look up his credentials. I love you all like family after only a couple of months, and I'm so glad to be here; but for the record, I myself have 3-4 hour cluster attacks without ever having had anything to give me a rebound, and I have tried everything suggested on this board, and nothing has worked for me except Floricet, which has a mild narcotic.   And if you talk about quality of life, I cannot BELIEVE that any one of you would consider for one second that living with CH pain is somehow BETTER than being on narcotics.  No offense, but you guys are starting to make me feel like some kind of dirty, low-life junkie, and that's the last thing I need right now when I'm dealing with K9's, finals, and a toddler. I'm upset because this whole board, except a few people, has completely disapointed me. I'm sad about it. I thought the board was better than this. I, had honestly hoped that things would change around here, after what I saw during the political season. I'd hoped that wasn't the true face of this board. And now? I honestly feel like an idiot for hoping that it wasn't. This board is THE only place sufferers have to go. When that's the case, I feel like you should act like it. There should be standards. Expecially with this disease being known to make you want to kill yourself. I see no reason to make anyone feel unwelcomed, until they prove that they are a troll. It's our responsibility to be kind to anyone, no matter what their choice of treatment is. We can disagree, but telling them that they are wrong for it, is in itself wrong. We shouldn't be judging. We should be offering our hands, saying that even if you choose this, it's okay. Let someone know the risks of any treatment, and then be at peace.

If things change to the point where we CAN'T ask questions to explore a person's symptoms and CAN'T ask what options they have considered instead of narcotics, then this board is worthless and I for one would be gone for good.

If every doctor diagnosed correctly and treated correctly your theory would work, but they don't and there will always be new visitors taking all kinds of drugs who will be asked questions.

That is because people here DO care and mostly are asking the questions for very good reasons born from experience

W

UnderTheRadar wrote on Dec 18^th, 2008 at 12:06am:

We are not doctors. period. We don't know this person, or his medical history, or his allergies, or what has and hasn't worked so far for him.  and yet everyone is so quick to tell him he is wrong, wrong, wrong for taking his prescription medication, and the general tone is that narcotics are NEVER okay for CH (or anything else.)

That's what it boils down to.....  Narcs just for uncomplicated CH is generally not a good idea, period, but there are severe chronic conditions that leave patients and doctors with no choice.

I've worked with a young man who broke his back very badly.  He cannot get out of bed by himself, much less tie his shoe laces, even with a patch on 24/7.  His doctors as well as himself know he would eventually head toward a detox facility out of state.  But there was no choice for him besides stay in bed fetal position in constant agonizing pain, no break whatsoever.

I pass no judgment either.  Linda is right on concerning warning.  I perfectly understand Pixie's point too as she's not talking about narcs solely for CH, and there ARE cases that desperately need narcs with or without CH.  Without proper credentials in pain management medicine, no "alternatives" should be suggested to his whole treatment plan.

Now that EVERYBODY understands that Ohioterpes needs to stay on narcs for the back, can we just move on?  His medication is up to him and his doctors.  We can still offer emotional and moral support.

Mystina,

I know you're worked up on this one for your own reasons. I've learned a lot here at CH.com. I've learned about poor treatment strategies from people who have experienced them. I've learned about effective strategies from those who have lit the way in many instances. I've learned how to fight for the most effective treatment options for me.

Managing CH isn't easy, as it isn't for any health problem. It is hard work. In this thread the originator wanted an easy answer. This was evidenced by his dismissal of almost any input that required interaction beyond interaction with his keyboard. I don't blame him, what he's going through is surely hell. But, it's a hell that many posters on this thread are keenly aware of.

First, his present situation is not likely to lead to a rational approach to his being his own advocate for care. Second, at his age, he will be hesitant to argue his care with a friend of his father's as his caregiver.
More complication.

But, there are strong feelings on this subject. And, believe it our not, this subject has evoked much more careful feedback than I've seen in the past. I actually thought most people were pretty sensitive to his situation. But you are mistaken if you think this is "the giant hug" cluster headache site.

People come here to learn. People come here for support. Learning and support is often a result of people disagreeing -- even with new arrivals.

There is no easy answer. If you feel a special kinship with the originator, then good for you. Your statements: "I'm upset because this whole board, except a few people, has completely disapointed me. I'm sad about it. I thought the board was better than this.", or "It's our responsibility to be kind to anyone, no matter what their choice of treatment is. ".....well, pixie, you'll probably feel that way again here.

My main issue with the originator is this, he states:

"if i am presented with two options the first being walk and do things i normally can do, as well as giving me relief from my CH. the second option is walk slow and hunched over with debilitating pain and a CH attack that is extreamly painful i think like most people i would take option number one."

He's asking us to agree with him, or at the very least dismiss any of the feedback given, that narcotics are the only answer for him. Sorry, but I don't think you're going to find everyone saying, "yeah dude, you're right." to that.

Then he does it again, later he says:

"so it is not hard to put two and two together and see that CH and chronic back pain can be treated with the same medication it is best to do so."

Again, he's asking us to agree with him that the meds he now states are for his chronic pain are effective for CH. Again, I don't think you'll find people agreeing with that.

Managing cluster headache is hard, hard work. Overlay another condition and it complicates it further. We've seen some really tragic situations go through this board - some with really tragic outcomes, and others with miracles of life-changing dimensions. All of them faced hard work to find their answer.

Scott

I completely agree with everything Scott just posted.

Must've missed this thread somehow, but here's my 2 cents.
Yes there are 3 hour attacks. I get them in the second month of my cycle. They are the really nasty ones that even Imitrex won't touch, or barely. They are the ones that make you wanna blow your head off.
Luckily they only occur several times each cycle.

As for the narcotics, I can tell you what doesn't work: benzo's (valium, temazepam, xanax and the likes) and methadon.

Pascal.

Wow, thank you everybody for being cool.  I'm so sorry I got so hot-headed...I'm just afraid of losing the only outlet that I have for this.

I totally agree with everything Scott just said- the whole issue of narcotics' effectiveness aside, yes, it does look like Ohio may just want a quick agreement.  And good point, too, about how it WILL be hard for him to disagree with his doctor b/c of his age and especially the fact that it's a friend of his dad!  In fact, his dad should read this whole thread, too.

It's true that this is a volatile issue, and in a way it DOES need to get thoroughly hashed-out so no one is able to just take the easy way out with narcotics.  I just hope we don't alienate anybody like Ohio, who probably needs this board more than most people.

But I want to know, what about when the narcs DO work?  Why don't they work for most people?  Yes, Pascal, I did notice that the benzo's did nothing for my CH, although they helped with accompanying tension.  Vicodin helped a tiny bit (before I barfed all over the sculpture lab at the art building.  :P )  But I am getting significant relief from the Florinal, and at a very low dose.  

Anybody got a link to some info? Like a "narcotics for dummies" or a CH study?  I'm scared of having to deal with CH for the rest of my life, but I'm also scared of the choice of narcotics or nothing at all, because I know I would have to choose narcotics.

Love to you all,
Paige

This is the last thing I will say on the subject.

Who are you to judge? Seriously, give me an answer on what makes you so capable.

If you have some other cluster site where people can get support, send me to it. I don't expect things to be all hugs, but this is the only places for sufferers to GO. We represent everyone with cluster headaches.

Meaning, when one person is a jerk, someone percieves us ALL as jerks.

You can disagree with someone, and not shove your opinion down their throat. Which is exactly what happened. There is a REASON why people expect to get 'yelled at', as one thread put it, for mentioning narcs. It has it's place in medicine, and it's not for CH, but sitting there and telling someone that they are wrong, over and over, acomplishes nothing.

Which is part of why, I'm done with this. I'm done trying to get you to see things from another viewpoint.

there was no reason for me to bring up my chronic back pain and how it was treated in my first posts, i was not looking for alternative means to deal with a different problem, i was looking for ways to get through finals with CH.......and treatments for CH especially when in this great length, my Nero said oxygen is a great way to stop short attacks, but not those in this duration.....and quite frankly i trust the man as my father did when they worked together back in baltimore.....furthermore i do not think that the pain meds are responsiable for every headache to last 3-4 hrs.......i understand that rebound headaches will happen, but they fail in comparison to CH and feel more along the lines of a simple migraine.

furthermore i do not care if you think that treating CH with Pain medications is a good idea.......and i want people to disagree with me, that is one of the best way to find new solutions to problems....and to set things straight my father is an endocrinologist and not a nero

Pixie-elf wrote on Dec 18^th, 2008 at 2:47pm:

This is the last thing I will say on the subject. Who are you to judge? Seriously, give me an answer on what makes you so capable. If you have some other cluster site where people can get support, send me to it. I don't expect things to be all hugs, but this is the only places for sufferers to GO. We represent everyone with cluster headaches. Meaning, when one person is a jerk, someone percieves us ALL as jerks. You can disagree with someone, and not shove your opinion down their throat. Which is exactly what happened. There is a REASON why people expect to get 'yelled at', as one thread put it, for mentioning narcs. It has it's place in medicine, and it's not for CH, but sitting there and telling someone that they are wrong, over and over, acomplishes nothing. Which is part of why, I'm done with this. I'm done trying to get you to see things from another viewpoint.

Pixie, when I said that they didn't work, I meant for me. I can't speak for anyone else, nor will I.
However, it should be pointed out that they are very dangerous, as they are addictive as hell.
I am not in favour of doctors prescribing them.

Pascal.

ohioterpes wrote on Dec 18^th, 2008 at 2:49pm:

there was no reason for me to bring up my chronic back pain and how it was treated in my first posts, i was not looking for alternative means to deal with a different problem, i was looking for ways to get through finals with CH.......and treatments for CH especially when in this great length, my Nero said oxygen is a great way to stop short attacks, but not those in this duration.....and quite frankly i trust the man as my father did when they worked together back in baltimore.....furthermore i do not think that the pain meds are responsiable for every headache to last 3-4 hrs.......i understand that rebound headaches will happen, but they fail in comparison to CH and feel more along the lines of a simple migraine.

I genuinely have NO idea what your neuro is saying with the " "oxygen is a great way to stop short attacks". It doesn't make any sense at all. 02 used CORRECTLY is an effective abortive for a huge proportion of sufferers, period. It aborts attacks and MAKES them short.

The very FIRST thing all Ch'ers need is a safe abortive which makes all or as many as possible of their attacks STOP. Not something which knocks the edges off the pain like a narcotic does and adds other problems.
This usually means 02 or triptans as they act on the pain mechanism, not the symptoms.
If abortives are not being wholly effective and sometimes even if they are, prevents are the next area to explore.

I am finding it REALLY hard here to see what avenues for CH treatment you HAVE explored. You just seem to be saying "my Dad's friend says use painkillers" so I do........

Most of us have discovered that you can't be that passive a player in your own treatment, you need to educate yourself, then educate them, then MAKE them give you the treatments that actually work.


Wendy

Quote:

Headache Clinic, Department of Neurology, Ghent University Hospital, De Pintelaan 185, B-9000 Ghent, Belgium. koen.paemeleire@ugent.be Cluster headache (CH) is associated with the most severe pain of the primary headache disorders. Barriers to optimal care include misdiagnosis, diagnostic delay, undertreatment, and mismanagement. Medication-overuse headache (MOH) may further complicate CH and may present as increased CH frequency or development of a background headache, which may be featureless or have some migrainous quality. A personal or familial history of migraine appears to be strongly associated with the development of MOH in CH, at least with the phenotype of background headache. Patients with CH, especially those with a personal and/or family history of migraine, must be carefully monitored for MOH, and medication withdrawal should be considered if a CH patient presents with features of MOH.

;)

what i meant by short attacks, are the attacks that last less then an hour


and pain meds mentally addictive, much more so then the physical aspect, and being a son of a doctor i know the signs of an addiction, and he dose to........now that being said  pain medication is addictive to alot of people, but it is used to treat pain (in my case my back and head) and if the pain can be manged they help..........and if you want to know what exact dose i take it is 750mg hydrocodone every 5hrs during an attack cycle....but when not in a cycle and just to treat back pain it is 500mg every 6hrs....keep in mind i am 6'4 250

Pixie-elf wrote on Dec 18^th, 2008 at 2:47pm:

This is the last thing I will say on the subject. Who are you to judge? Seriously, give me an answer on what makes you so capable. If you have some other cluster site where people can get support, send me to it. I don't expect things to be all hugs, but this is the only places for sufferers to GO. We represent everyone with cluster headaches. Meaning, when one person is a jerk, someone percieves us ALL as jerks. You can disagree with someone, and not shove your opinion down their throat. Which is exactly what happened. There is a REASON why people expect to get 'yelled at', as one thread put it, for mentioning narcs. It has it's place in medicine, and it's not for CH, but sitting there and telling someone that they are wrong, over and over, acomplishes nothing. Which is part of why, I'm done with this. I'm done trying to get you to see things from another viewpoint.

 You asked and you shall receive.
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   Kinder gentler Potter

ohioterpes wrote on Dec 18^th, 2008 at 9:16pm:

what i meant by short attacks, are the attacks that last less then an hour and pain meds mentally addictive, much more so then the physical aspect, and being a son of a doctor i know the signs of an addiction, and he dose to........now that being said  pain medication is addictive to alot of people, but it is used to treat pain (in my case my back and head) and if the pain can be manged they help..........and if you want to know what exact dose i take it is 750mg hydrocodone every 5hrs during an attack cycle....but when not in a cycle and just to treat back pain it is 500mg every 6hrs....keep in mind i am 6'4 250

I am genuinely sorry ohioterpes - it appears that you don't want to answer any questions about your CH which are only asked so people can try and understand and help, and you don't wish to explore or discuss CH treatment options.

If all you prefer to do is discuss your pain meds, I have nothing useful to contribute so I will leave the posting from now on to others

Good luck with everything

Wendy

your right i have not answered any questions such as where the pain is located, how bad, how long it last, preventitve medication, and alternative medications for headache pain. i have not answered any of these questions at all....or wait, wait i did...if you would like to know something ask i cant read your mind and answer questions that have not been raised.

Pixie-elf wrote on Dec 18^th, 2008 at 2:47pm:

This is the last thing I will say on the subject. Who are you to judge? Seriously, give me an answer on what makes you so capable. If you have some other cluster site where people can get support, send me to it. I don't expect things to be all hugs, but this is the only places for sufferers to GO. We represent everyone with cluster headaches. Meaning, when one person is a jerk, someone percieves us ALL as jerks. You can disagree with someone, and not shove your opinion down their throat. Which is exactly what happened. There is a REASON why people expect to get 'yelled at', as one thread put it, for mentioning narcs. It has it's place in medicine, and it's not for CH, but sitting there and telling someone that they are wrong, over and over, acomplishes nothing. Which is part of why, I'm done with this. I'm done trying to get you to see things from another viewpoint.

Pix,

Lots of people have left this board permanently because of vicious personal attacks. Part of this is simply that CH leaves one with a very short temper and little perspective on how our comments affect others. Those of us who use narcotics tend to keep quiet about it because it invites attacks. Like anything, in some people narcotics are a trigger or at best offer no relief at all. Trying to lecture them about long-term heart valve damage caused by Imitrex, however, and they act like you are batty because long term damage is not important when one is struggling to find the motivation to live through a single day. Relate that to narcotics for those of us whom nothing else works for and they don't get it.

My advice?  Just give up trying to change people's minds about narcotics. In their minds it is as addictive and pointless as meth or heroin, and you aren't going to educate anyone. The irony is that most of them haven't tried it. Narcotics only help about 20% of people who try them, and because of other problems everything else should be tried first. If you are episodic, this may mean you could go decades trying other things before you determine nothing else works for you. If you are chronic it may only take 2-3 years.

In this particular instance it looks like they were right, and this particular person hasn't tried alternatives yet. Alternatives that are not as problematic as narcotics are. Don't assume that doctors are educated about managing CH. Most MD's in the USA have 4 hours of headache training. Most of them will never see a single patient with CH. Even if you are on the narcotics bandwagon, they still must be seen as a last resort because they create permanent changes in your brain that lead to higher and higher tolerances until they finally stop working entirely.

Relax, take a deep breath, and don't let people get to you.

ohioterpes wrote on Dec 12^th, 2008 at 7:35pm:

i am going to rush through it and try and speed home...my fastest time is 2 hours and 45 min but i will have to go faster to make it......i will talk to him about all treatments out there when i meet with him.....and thanks for all your help so far.

   Maybe you missed  this part.

                  Kinder gentler Potter

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Pixie-elf wrote on Dec 18^th, 2008 at 2:47pm:

Who are you to judge? Seriously, give me an answer on what makes you so capable.

We are a people with knowledge.  We are not doctors, we have actual first hand knowledge.  We aren't judging, we are passing along info.  

I am sorry you are upset, Mystina.  Opiates are addictive.  That is a fact and can not be disputed.  Whether you take opiates responsibly or irresponsibly, they are addictive.  Whether your doctor guides your prescription and has you under close supervision or not, opiates are still addictive.    

Ohioterpes, you have a script for the hydrocodone and you say it's 500mg and 750mg hydrocodone?  

 

BMoneeTheMoneeMan wrote on Dec 24^th, 2008 at 7:11pm:

Pixie-elf wrote on Dec 18th, 2008 at 2:47pm: Who are you to judge? Seriously, give me an answer on what makes you so capable. We are a people with knowledge.  We are not doctors, we have actual first hand knowledge.  We aren't judging, we are passing along info.   I am sorry you are upset, Mystina.  Opiates are addictive.  That is a fact and can not be disputed.  Whether you take opiates responsibly or irresponsibly, they are addictive.  Whether your doctor guides your prescription and has you under close supervision or not, opiates are still addictive.     Ohioterpes, you have a script for the hydrocodone and you say it's 500mg and 750mg hydrocodone?

    And then ya drive real fast.  I can't find my butt with a hydrocodone in me.

                       Kinder gentler Potter

Potter wrote on Dec 24^th, 2008 at 7:52pm:

And then ya drive real fast.  I can't find my butt with a hydrocodone in me.                        Kinder gentler Potter

Good thing you're not taking any!   ;D  

Meds and tolerances are as individual as the beast.  Some people take 240mg of verapamil for relief and others need 1200mg.  Some people need 250mg of Depakote, others need 1000mg.  Etc.  

I can drink 2 glasses of wine before getting loopy.  When he could drink, Gary could drink 2 bottles of wine before getting to that same loopy.

IMO, narcotics have a role in treating intractable chronic pain.  But when it comes to CH, uneducated doctors will prescribe it inappropriately, and uneducated patients desperate for anything to relieve the pain don't know better.

Good thing CH.com is here to be found.  :)

Laurie