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jenjen
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I thought I was alone
« on: Nov 18th, 2007, 12:57am »
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I always thought I had migrane's and everyone told me to keep a diary to track when I got them etc. etc. and when it came down to it that there was just no ryhme or reason.  My Neuro finally diagnosed me with CH's about 8 years ago. All together,  I think I have been suffering from CH's for 18 years though on and off. (I am now 35) All these years I have been taking Imitrex (which doesn't work fast enough). At one time I think I was on a preventitive that started with a "P", but stopped taking it when I was prenant and never got back on it since I was in a relief stage.  I usually get them 1 -2 times a year and have the CH's for about 4-8 weeks usually. If it wasn't for the down time from them I think I would have looked into them more seriusly, but I just thought it was something I had to live with --UNTIL THIS ROUND.  I had a year and half with no CH's. (it was almost like I forgot about them) About 5 weeks ago I started up again. I fear I'll get one at anytime and sometimes get them around the clock, but the full fledge ones are usually at night. As usual they are HELL (TERRIBLE TERRIBLE pain), but I can deal has always been my approuch.  Well - this time around I had back to back nights of Kip 10's. After going through them at this level I don't consider these to be headaches anymore - it felt more like I was having seizures or something. I felt like a complete lunitic. My husband has always seen me suffer from these over the years, but I would move a bit and just push my eye in to the point where I thought I was going to injure my eye. I also would rub my temples, etc. etc and about 30-45 minutes in terrible pain - they would be gone.  BUT this round has been at a different level. SO - I got online and really starting searching and came across this site. I cried as I read through the posts. I had no idea other people suffered from these like me. I thought it was just the way my headaches were. I am also so sad for the people that have to deal with theses as chronic suffers. THe one thing I am happy about finding this site is to know that someone else knows what I mean by the intense pain. I get so sick of explaining the pain to people and they say - OH - yes I get migranes too. These are not migranes - these are somthing ALL TOGETHER DIFFERENT. Even at a Kip 5-7 - they are TERRIBLE TERRIbLE TO live with.  
 
I made a new appointment with the Neuro since it had been so long. He gave me the shots of imitrex and the steriod predisone. (I haven't started them yet - the appt. was two days ago)
 
OK - here are my questions to you out there.
 
-- Since I had such a bad round this time around (and still in it- but seem to be getting out of it) does this mean that I will continue to have them this way moving forward - anyone have any insite on this? I am so scared.
 
-- Also - my Doc told me Imitrex is not the solution. I thought I could just live on the IMetrex. My insurance only gives me 18 for about 20 days and I am done with them long before - he said I shouldn't be taking them like this. What is the deal with the Imetrex ??
 
--- Lastly - I am also scared to take the predisone. What are the side effects? I just hate anything that doesn't make me feel like myself.  ANyone have any insights?  
 
-- oh another Q --- has it ever been determined if there are certain similar qualities in CH suffers that make us have them? I was reading something about seritonine etc.. I am just lost as to why I have these? (other than these - pretty healthy person - don't drink but casual, and have only smoked casually too)  Also - being a female - I was suprised to read Males are more likely to suffer.  
 
THank you so much for your reply's and for reading. I needed to get my story out there. I am just so amazed that there are other people who go through these.
 
Thank you,
JenJen
Minnesota
 
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Re: I thought I was alone
« Reply #1 on: Nov 18th, 2007, 2:14am »
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on Nov 18th, 2007, 12:57am, jenjen wrote:

 
OK - here are my questions to you out there.
 
-- Since I had such a bad round this time around (and still in it- but seem to be getting out of it) does this mean that I will continue to have them this way moving forward - anyone have any insite on this? I am so scared.
 
-- Also - my Doc told me Imitrex is not the solution. I thought I could just live on the IMetrex. My insurance only gives me 18 for about 20 days and I am done with them long before - he said I shouldn't be taking them like this. What is the deal with the Imetrex ??
 
--- Lastly - I am also scared to take the predisone. What are the side effects? I just hate anything that doesn't make me feel like myself.  ANyone have any insights?  
 
-- oh another Q --- has it ever been determined if there are certain similar qualities in CH suffers that make us have them? I was reading something about seritonine etc.. I am just lost as to why I have these? (other than these - pretty healthy person - don't drink but casual, and have only smoked casually too)  Also - being a female - I was suprised to read Males are more likely to suffer.  
 
THank you so much for your reply's and for reading. I needed to get my story out there. I am just so amazed that there are other people who go through these.
 
Thank you,
JenJen
Minnesota
 

 
No, you're no longer alone.  That's the best and most incredible thing about this site.
 
Jen, I can't tell you whether you'll be dealing with these at the same level you're dealing with them now--I doubt that anyone can.  I understand your fear of them, but be assured--please.  You can survive them, learn to control them, and go forward, no matter what happens.  
 
Plenty of people willing to help will be along shortly to answer your questions in more detail.  In the meantime, please explore the links on the left side of your screen, paying particular attention to the "oxygen info" link.  Pure oxygen, administered at 10-15 liters per minute with a non-rebreather mask is a potent and effective abortive for about 70 percent of us.
 
As far as whether we have common characteristics--well--there are any number of different physical and personality types here.  The one thing we seem to have in common is a dodgy hypothalumus.  No reason for it, it seems--just something we're born with.  
 
Tell us a bit about your headaches, and how they present.  Could be we could give you a few thoughts on how you might deal with them more effectively.
 
Welcome home--and you are home now.
 
Best wishes,
 
George
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Re: I thought I was alone
« Reply #2 on: Nov 18th, 2007, 4:30am »
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Jen, I am sorry you had to find us, but as George said, you are home now. Welcome to the family.  
 
I can answer some questions for you, and others will come by to answer them too. One thing about CH is that not all drugs work the same for all people.
 
The Beast (what we call the CH) does change, or morph over time. It could be this particular cycle is rougher than usual, there really isn't an answer to this, except for what you notice going forward. But talk to your neuro, and get an abortive, oxygen is  the best, at a high flow rate, 100% through a non-re-breather mask at 15 liters per minute (lpm). This will stop a hit in it's tracks most of the time for most people, it's best to start it as soon as you notice the first symptom, it works better and faster this way. Ask your neuro for a script for it.
 
Also, there is verapamil, topomax, lithium, depakote, just to name a few preventatives. Imitrex is a good abortive, and the injections are best, followed by the nasal spray. The pills work way too slow. There is a way to split the injections into 1/3rd shots, a smaller amount, and this makes the trex last longer. Look over to the left of the page, and see "imitrex tip".  
 
Prednisone will usually stop a cycle in it's tracks, and is usually given, while you ramp up on a preventative, and taper off the pred at the same time. I get pred when I can't handle the "cycle" I happen to be in, and it kills the cycle on the first day for me, actually within about 90  minutes, then I taper off, going by the docs directions exactly. Pred has short term effects, like being hungry, and irritable. You may gain a few pounds, but will lose it quickly once it is stopped.
 
We don't like to use pred much, but for some of us, it's the only thing that will stop a cycle, while we try something else as a prevent. Long term use, and using pred wrong will do irreversible damage your body, over the long term, so follow your doc's directions regarding this, and any med exactly.
 
I haven't had any problems with Imitrex, although if you have a heart condition, it's a problem. If used a lot (max dosage daily), you can get rebound headaches from using it, which suck.
 
The one thing we all have in common is that our hypothalmus is messed up somehow. That is also our body clock, and may explain why the hits some on like clockwork for some, and wake us up at night.
 
Melatonin is an over the counter med some use at night, it helps you sleep. Drinking really strong coffee, or an energy drink, like Red Bull, or similar, will help stop a hit, or make it much less. Smoking and alcohol are triggers for many people, for other's it's not. I'm chronic, and smoking nor alcohol use does not bother me. I rarely drink, but you will find a lot of Ch'ers do smoke.  
 
Read the tabs to the left. Print out what you need, and take it to your neuro. There is also good info in the OUCH website that you can print off too.There is a link to OUCH on the left.
 
Ask all the questions you want, that's what we are here for. The main thing is you CAN live your life in spite of them. You will learn to fight them, and all of our weapons. We all understand the pain, believe me, I pretty much don't try to explain to anyone anymore, due to the reaction you said you get. Life is good. And no, you are most definitely not alone. Welcome home!  
 
 
 
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Re: I thought I was alone
« Reply #3 on: Nov 18th, 2007, 8:40am »
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Hi JenJen,
 
Welcome home hon.  You have found the only place on the planet where your pain is shared and understood.  You were never alone.   I'm glad to see you finally found your way here.
 
You've already been given some very sound advice.  Read, read, read is the best way to sum it up.  OUCH-US has lots of good basic info.  This site has experience to learn from and lots of supportive folks to lean on.
 
I'm one of the lucky 70% and 100% Oxygen @ 12-15lpm works for me.  I keep a big m-tank at home in my bedroom and carry around e-tanks so I'm not chained to the one at the house.  Melatonin works to keep my night hits at bay.  I take 9-12mg a half hour before bed time.
 
When I feel a hit coming during the day I pound down an energy drink and get on the O2.  10-20 minutes later I'm usually pain free.  For the monsters that slip by the Melatonin and wake me up I use O2 but skip the energy drinks.  Otherwise I'm up all night anyway.  If that doesn't work then I resort to an Imitrex injection.  I use the 4mg injections.  It's enough to do the job without risking side effects.  With this strategy I only averaged around one injection a week during my last cycle.
 
For a preventative I use Verapamil.  There are lots of other options out there as have already been listed.  A pred taper is something I'm going to try next cycle.
I'm still working on this part of my stragtegy.
 
So keep reading and asking questions.  I hope you get some serious PF (pain free) time soon.
 
-Dennis-
 
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Re: I thought I was alone
« Reply #4 on: Nov 18th, 2007, 7:36pm »
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http://www.plainboard.com/ch/chtherapy.pdf
 
Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
  =========================
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."Wink
 
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
 
 
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Re: I thought I was alone
« Reply #5 on: Nov 19th, 2007, 1:41pm »
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Warm welcome, JenJen! Smiley
 
You're not alone and you'll pretty much someone to talk to in here 24/7.
 
Wishing lots of PF days,
Sanna
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Re: I thought I was alone
« Reply #6 on: Nov 19th, 2007, 9:27pm »
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Thank you  Thank you Thank you.  I have been on the site so much reading posts and I just feel so thankful and so amazed at how supportive everyone is. All these years I thought I was the only one with this pain since I hadn't heard much about it. It is so wired to hear the stories. Today I was reading a post about Shawdows. I was wondering what they were too - just what I thought they were. Everyone's descriptions were eactly my experience.  Sometimes I feel like I have shadows all day and they suck cause you fear they will go full blown and also you aren't sure if you should use a medication on them.  
 
Although it sucks to be on this site, I am so happy I found it.  
 
As for trying the predisone - I have decided against it. I heard the side effects are TERRIBLE. I think I am going to try to finish out this cycle with just the imitrex shots and if and when they return (hopefully never) I am going to try to get on the preventative and get the O2. It sounds like the O2 is the best.
 
Thank you  
 
Jen
 
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Re: I thought I was alone
« Reply #7 on: Nov 20th, 2007, 6:32am »
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Hi Jen & Welcome
 
  So glad you found this site . . . I was a basket-case when my wife found it for me (2/02), which gave me a name-for-the-pain and the info/ammo to battle the beast.
 
  I can't take Imitrex (high cholesterol and some arterie blockage . . . VERY dangerous for me), so 02 is my only abortive . . . works in minutes if used early-on in the attack.  DON'T WAIT for your next cycle to get your 02 script and get your tank(s) and regulator (15 lpm) and mask (non-rebreather).  If it works for you, you'll save a lot of Imitrex (many here use 02 FIRST, and then the Imitrex if the 02 doesn't knock him out.  It has been my life-saver . . . . I can live with the beast as long as I don't have to "dance" with the bastard . . .  and 02 has kept me from many a dance.
 
  Don't discount water therapy (see water X 3 . . . link on left).  I am personally convinced this has helped reduce the frequency/intensity of my attacks.
 
  Very glad you found us . . .  you've stepped into a family of folks who truly know your pain.
 
  Be Safe,  PFDANs
 
     Richard
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Re: I thought I was alone
« Reply #8 on: Nov 20th, 2007, 7:16am »
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Really be stubborn, obnoxious, pushy, demanding, whatever it takes to get the oxygen. It's dirt cheap, especially compared to imitrex, has no side effects, and I can knock a CH dead in as little as 6 minutes, that's completely pain free. Almost 30 years of dancing with the beast and oxygen is  STILL my first line abortive.  
 
Read the oxygen link on the left, print out the info and demand 02 from the doc. If he refuses get another doc. I'm still amazed at doctors reluctance to prescribe something as safe as 02, while they pile the narcotics on you like they're candy!!!   (Rant done!!!!)
 
Welcome to the family child, we'll do all we can to help you get control of the beast. It's personal with us, if the beast wins, we all lose. We hate that!!!!
 
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Re: I thought I was alone
« Reply #9 on: Nov 27th, 2007, 1:58pm »
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Welcome Jen,
 
As you might have noticed, everyone here is sympathetic and supportive to your plight.  
 
Being that this is my second tour of duty here I can say from personal experience that I love this place.  I just hate the reason for which we all are here.
 
on Nov 20th, 2007, 7:16am, Guiseppi wrote:
I'm still amazed at doctors reluctance to prescribe something as safe as 02, while they pile the narcotics on you like they're candy!!!   (Rant done!!!!)

 
Just speculating here, Guiseppi; but Doctors' reluctance to prescribe oxygen might be due to the fact that oxygen is actually toxic.  It is not commonly known by the general public since we're all taught that it is the O2 component in "air" which our bodies respire.  
 
What we're not told is that our bodies can only handle a certain range of O2 concentration.  O2 starvation is known as hypoxia and can hit as fast as flipping on a switch.  
 
Too much o2 is called hyperoxia and can occur when breathing O2 laden air at pressures significantly higher than normal atmospheric pressures or when breathing O2-rich air at normal atmospheric pressures for a prolonged period of time.
 
My point is that contrary to popular opinion O2 is not 100% safe.  I'm not trying to incite a panic.  Just trying to spread some awareness re: o2 and reiterate that whatever your treatment is, follow your doctor's instructions carefully.  
 
If you have ANY questions or feel you need to change the dosage, frequency, etc of your treatments, please make sure you consult with a physician first.  
« Last Edit: Nov 27th, 2007, 2:01pm by yhliem » IP Logged




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Re: I thought I was alone
« Reply #10 on: Nov 27th, 2007, 2:03pm »
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on Nov 27th, 2007, 1:58pm, yhliem wrote:
Welcome Jen,
 
As you might have noticed, everyone here is sympathetic and supportive to your plight.  
 
Being that this is my second tour of duty here I can say from personal experience that I love this place.  I just hate the reason for which we all are here.
 
 
Just speculating here, Guiseppi; but Doctors' reluctance to prescribe oxygen might be due to the fact that oxygen is actually toxic.  It is not commonly known by the general public since we're all taught that it is the O2 component in "air" which our bodies respire.  
 
What we're not told is that our bodies can only handle a certain range of O2 concentration.  O2 starvation is known as hypoxia and can hit as fast as flipping on a switch.  
 
Too much o2 is called hyperoxia and can occur when breathing O2 laden air at pressures significantly higher than normal atmospheric pressures or when breathing O2-rich air at normal atmospheric pressures for a prolonged period of time.
 
My point is that contrary to popular opinion O2 is not 100% safe.  I'm not trying to incite a panic.  Just trying to spread some awareness re: o2 and reiterate that whatever your treatment is, follow your doctor's instructions carefully.  
 
If you have ANY questions or feel you need to change the dosage, frequency, etc of your treatments, please make sure you consult with a physician first.  
 
 
     Hey Batch we need ya here.
 
   Potter
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Re: I thought I was alone
« Reply #11 on: Nov 27th, 2007, 2:06pm »
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on Nov 20th, 2007, 7:16am, Guiseppi wrote:
Really be stubborn, obnoxious, pushy, demanding, whatever it takes to get the oxygen. It's dirt cheap, especially compared to imitrex, has no side effects, and I can knock a CH dead in as little as 6 minutes, that's completely pain free. Almost 30 years of dancing with the beast and oxygen is  STILL my first line abortive.  
 
Read the oxygen link on the left, print out the info and demand 02 from the doc. If he refuses get another doc. I'm still amazed at doctors reluctance to prescribe something as safe as 02, while they pile the narcotics on you like they're candy!!!   (Rant done!!!!)
 
Welcome to the family child, we'll do all we can to help you get control of the beast. It's personal with us, if the beast wins, we all lose. We hate that!!!!
 
Guiseppi

 
 Spot on.Listen to this guy.
 
    Potter
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Re: I thought I was alone
« Reply #12 on: Nov 27th, 2007, 2:10pm »
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Pete will be along shortly to debate this as a lot of doctors still believe what you just said. Pete flew multi million dollar fighter jets and would breathe pure oxygen for many many hours at a time. 40 years later Pete is still alive and well and suffering absolutely no side affects from the years and years of breathing pure oxygen. This compared to your typical CH'er who needs about 10-20 minutes worth to abort a headache.  
 
As with so many other spects of this affliction, there are still many unproven myths floating around we have to fight against to get the treatments we need.  
 
OUCH is our educational arm and has done much in the area of education to help us get the treatments we need. Clearly we still have far to go!
 
Guiseppi
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Re: I thought I was alone
« Reply #13 on: Nov 27th, 2007, 2:28pm »
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I'd be interested to talk to Pete in order to find out under precisely what conditions he was breathing 100% O2 and for how long.
 
I'm no pilot but I'd suspect most of his prolonged use of pure O2 would have been at higher altitudes (and thus lower air pressures) and as a result the supply would be at less than 1 atm.   In this kind of situation longer than normal exposure to 100% O2 is certainly possible.
 
I'm not arguing against O2 therapy at all.  I was just speculating as to a possible reason why doctors seem reluctant to freely prescribe something as "safe and benign" as pure oxygen.  The reason being that oxygen is not as safe and benign as we're all led to believe.  
 
More to the point: there does exist a threshold for the amount of O2 that we can be exposed to and doctors, who generally tend to err on the side of caution (at least in MY experience) could be overly wary aboutit.
 
I completely agree with your point that for all the things that doctors prescribe, oxygen is most assuredly not the most dangerous and drs seem to be ludicrously paranoid about it.
 
Again, I'm not trying to stir up shit here, just offering a possible reason why. Smiley
 
Hell for all we know drs could be reluctant because they're afraid a patient might accidentally blow themselves up by lighting a smoke while they're taking O2 therapy.
« Last Edit: Nov 27th, 2007, 2:32pm by yhliem » IP Logged




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Re: I thought I was alone
« Reply #14 on: Nov 30th, 2007, 5:46am »
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Hey Jen,
 
Please check your PM for a message from me...  You're not alone...
 
Hope you're feeling better...  Thanks for the headzup Potter...
 
V/R, Batch
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