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Topic: What is going on with my head?? (Read 568 times) |
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Lizzie2
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What is going on with my head??
« on: Dec 6th, 2003, 8:59am » |
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As some of you know, my primary headache condition is New Daily Persistent Headache, which is a type of chronic daily headache with a specific set of symptoms, but I won't get into that other than that nothing has worked to help it! Also, over the last few months, I have developed symptoms of CPH as I get severe stabbing orbital headaches anywhere from 3-4 times a day up to 20 times a day with a variety of symptoms that very much sound like the CPH type headache.
SO, last night, I'm tryin to sleep, and I wake up at 4:45 with the WORST headache I had had in awhile. It was stabbing thru my right eye again like during CPH-like attacks, but also thru R temple and I felt pain radiating down the side of my face. It hurt so much, I couldn't stay in my bed. So I got up and walked around and I grabbed an ice pack. I had the tearing in my right eye and congestion on right side, which is how I know it's not a migraine and more like the CPH attacks, except lasting longer and coming at stranger time of day. Pain finally went back to manageable by 6:30am, and I went to bed totally exhausted. What is going on with my head??? I know you all are used to getting AWFUL attacks during the night all the time, but as a NDPH sufferer, my main problem is insomnia, and headaches wake me up during the night sometimes, but not like this. I need help. 
~Lizzie (Lizzie2)
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brain_cramps
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Re: What is going on with my head??
« Reply #1 on: Dec 6th, 2003, 9:59am » |
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Lizzie
Sorry to hear that you now think you have CH on top of NDPH, CPH and migraines. That must be quite the handful.
Can you tell us a little about the meds you are taking for NDPH, as you say nothing seems to have helped.
grant
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| « Last Edit: Dec 6th, 2003, 10:00am by brain_cramps » |
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Lizzie2
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Re: What is going on with my head??
« Reply #2 on: Dec 6th, 2003, 10:22am » |
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Hi Grant,
Well I don't really know if it's CH...never really had attacks like that before. Mostly just the shorter ones several time per day. I guess I just need to find out...it's so frustrating....
Here's the meds tried:
I'm currently on parnate, verapamil (240mg), topamax, neurontin, methergine. I take melatonin and migrahealth supplements also for headache. My abortives at the moment are Thorazine 25mg and DHE injections.
I've tried for preventives...pamelor, prozac weekly and daily, depakote, neurontin, inderal, indomethacin (only for about 12 hours), botox, nerve block shots, ativan, concerta. For abortives I've tried...fioricet, anaprox, midrin, phrenellin, zomig, maxalt, trex injections, zyprexa, geodon, depacon and prednisone dosepaks.
I won't say that these have absolutely brought NO relief, but overall...not much to speak of since the headache is still pretty severe most of the time and I'm on all of this stuff. Nerve block shots are temporarily effective about 50% of the time for me. Ativan of course helps me sleep and concerta helps ADD related to topamax. On prednisone, I got about 2 better days, but then it got worse again. Pamelor helped me in the very very beginning when I took it, but then went ineffective after about a month. Zyprexa used to be an effective abortive, but isn't anymore. Thorazine is occasionally helpful at 50mg, and DHE is also occasionally effective. (We're talking migrainous-like attacks or even CPH-like attacks when I say effective.)
So that's it on the med front. I really don't even know what is going on with the headache and the neuro hasn't Dxed CPH because he told me that there was no point in treating the up to 20 stabbing headaches I got per day. That made me upset because they are very disabling. Right now, I feel it's all just very out of control, and it scares me a little.
~Lizzie
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thomas
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Re: What is going on with my head??
« Reply #3 on: Dec 6th, 2003, 11:35am » |
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In answer to your question in the post - It sounds pretty much like a regular ol' ch attack.
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eyes_afire
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Re: What is going on with my head??
« Reply #4 on: Dec 6th, 2003, 12:43pm » |
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Lizzie,
I'm sorry you're having a bad time. I was lurking, but I just had to log on.
This is insane:
Quote:| the neuro hasn't Dxed CPH because he told me that there was no point in treating the up to 20 stabbing headaches I got per day. |
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Lizzie, does your Neuro realize that if you do indeed have CPH, it is highly treatable? Indomethacin is very effective in treating CPH.
In my opinion, Indomethacin (certainly for longer than 12 hours) should be one of the first meds to try. It's dirt cheap, and highly effective for some of the TACs (Trigeminal Autonomic Cephalalgias). Of course, since it is prescription, it should only be taken under the supervision of a physician.
For me, speaking as a clusterhead, this is my PERSONAL preventative strategy:
Start with Indomethacin and/or Verapamil. Why Indomethacin for me, a clusterhead? It's so cheap and has less mind altering side effects than anti-seizure meds... so if there's even a slight chance of helping a bit with CH or some of my other head pains, it's worth it. Unfortunately, I don't think it helped my CH... but I still think it's worth a try occasionally.
If I'm not quite satisfied and/or feeling a bit brave, then psilocybin is next option. Been there, done that. I consider myself very fortunate... I have not had to proceed beyond this step.
Then, next thing to try would be increase verapamil dose and/or change formulation.
Only after trying the above, do I consider Lithium or Topomax, either alone or in combinations.
And then some of the less reliable stuff like Neurontin, Depakote, Baclofen, Methergine, etc
Then desperation and straw-grabbing with Aricept, Clomid, New Religions, and god knows what else.
Personally, for me, I can't find any excuse for not trying Indomethacin.
--- Steve
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Lizzie2
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Re: What is going on with my head??
« Reply #5 on: Dec 7th, 2003, 12:17am » |
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Hi Steve,
Thanks for the suggestions on treatment strategies.
I honestly could not BELIEVE he would tell me that there was no point in treating them either. It made me very upset! He is world-reknowned as a headache neurologist and he suffers from headaches himself, so I'm not sure what the deal was there....
So my question now is....until I can get ahold of indomethacin and some better treatments for these headaches (both CPH-like and CH-like or whatever), what seems to work best when they hit during the night or whenever? My DHE and thorazine really aren't effective on them.
Last night I did the walk around the house for a long time with an ice pack on my head. Any other ideas to kill it off a little faster? I will be able to hopefully change meds soon, as I'm being admitted to the hospital right after Christmas for the NDPH. Thanks.
~Lizzie
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BstnEagles
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Re: What is going on with my head??
« Reply #6 on: Dec 7th, 2003, 1:46am » |
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Hey Lizzie
You may want to explore the triptans for abortives. THey are very good. I have never used the IMMITREX injections as I HATE needles, but the nasal spray works well for me most of the time. (usually kills the pain in like 10-20 minutes). The only problem is that sometimes, and not most of the time, they come back. I also got an rx for zomig nasal spray but have yet to try it. The only problem with these meds is that they are very expensive. Thus, insurance is a pain in the ass. You can usually get only six sprays a month with a normal copay. THATS IT no matter what. I usually fill the rx five days early though as that is the earliest the insurance will pay. The onyl bright side is that my insurance will pay for 6 immitrex and six zomig a month. However, I do not know how safe it is to take 12 triptans in a 30 dya period. I would use all of one first then wait at least 2 days(drug interaction says 24 hours) before using the other. Just my thoughts... Cheers
Ed
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brain_cramps
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Re: What is going on with my head??
« Reply #7 on: Dec 7th, 2003, 9:35am » |
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Currently:
- parnate
- verapamil (240mg)
- topomax
- neurontin
- methergine
- melatonin
- migrahealth supplements
- Thorazine
- DHE injections
In the past: (over what period of time?)
- pamelor
- prozac (weekly and daily)
- depakote
- neurontin
- inderal
- indomethacin
- botox
- nerve block shots
- ativan
- concerta
- fioricet
- anaprox
- midrin
- phrenellin
- zomig
- maxalt
- imitrex injections
- zyprexa
- geodon
- depacon
- prednisone
WOW --- looks like you've got all your bases covered. 
Did you ever think there might be a problem with overmedication/interactions that might be leading to rebound headaches?
Just a suggestion...
grant
(BTW... did you realize that Thorazine is used long-term with schizephrenics to keep them in a "happy" mood? My grandpa was on it for years just to make sure he "behaved". Also, I believe its original use was similar to a "chemical lobotomy".)
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| « Last Edit: Dec 7th, 2003, 9:37am by brain_cramps » |
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jonny
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Re: What is going on with my head??
« Reply #8 on: Dec 7th, 2003, 10:19am » |
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on Dec 7th, 2003, 9:35am, brain_cramps wrote:| Did you ever think there might be a problem with overmedication/interactions that might be leading to rebound headaches? |
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Do ya think?....LMAO....What a freakin list, christ!!!
..........................jonny
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Lizzie2
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Re: What is going on with my head??
« Reply #9 on: Dec 7th, 2003, 10:43am » |
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LOL you made me smile for the first time in a few days.  SOoooooooo all that was tried over a 3 year period...not just recently haha Let's see if I can explain a little better.
fioricet
- anaprox
- midrin
- phrenellin
- zomig
- maxalt
- imitrex injections
I haven't had any of those since January of 2001.
pamelor (Was on this for a long time, but have been off of it since June 2003)
- prozac (weekly and daily) (Took this for about 5 or 6 months and haven't been on since June 2003)
- depakote (Haven't had this since November 2001)
- neurontin (Am on currently, but last tried before in fall - January 2002)
- inderal (only tried for 2 weeks in June 2001)
- indomethacin (tried for 12 hours in June 2001)
- botox (have had 3 times...last time was June 2003)
- nerve block shots (get these frequently at office visits and hospital stays)
- ativan (haven't taken this since mid-november, but I do use this on-occasion to aid in sleep and actually make it thru a night without waking up with a headache)
- concerta (Have been off this since June 2003)
- zyprexa (I don't even remember the last time I took this, but it was a long time ago!!)
- geodon (Took this for 2 weeks in April 2002)
- depacon (I occasionally get this for 4 days as a taper, just recently tried...)
- prednisone (Have only tried this once as a 6 day taper in October 2003)
Currently:
- parnate
- verapamil (240mg)
- topomax
- neurontin
- methergine
- melatonin
- migrahealth supplements
- Thorazine
- DHE injections
Of the current meds, I have talked to my neuro about going off of some of them because I think I am overmedicated, and he said at the next visit we could maybe consider going off of topamax and verapamil. Verapamil is the one I DON'T want to go off of!! I would prefer to go off of topamax and neurontin. I only do DHE and Thorazine at most 2 days a week, but the reason I do thorazine instead of any other abortive is because there is no other pill form abortive that will help bring my NDPH back down to earth and help me sleep it off some. Once zyprexa went ineffective for me, thorazine was all I had.. I don't take it often though because if I take it at night, then I'm not much use for class the next morning, if I even wake up for them.
I don't think that any of the current meds combined cause rebound perse, but they do cause an overall really crappy overmedicated feeling, and I don't think they are doing jack shit for my headache because I am just on too many. IMHO, I would prefer to detox and start from scratch with indomethacin and verap, but that's not in the neuro's lovely plan for me... grr
Oh here's something funny I heard the other day. They just came out with a news article saying not to flush your excess prescription meds down the toilet because it's bad for the environment. Right...bad for the environment. Sooo we care that it's bad for the freaking trees, but not that it's turning us into toxic waste dumps if they overmedicate us with this stuff??? Another frustration on the overmedication picture... So that's once again more than my 2 cents worth on the issue!!
~Lizz
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Prense
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Re: What is going on with my head??
« Reply #10 on: Dec 7th, 2003, 10:51am » |
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I see no mention of O2....
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Lizzie2
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Re: What is going on with my head??
« Reply #11 on: Dec 9th, 2003, 11:41pm » |
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No I've never tried O2, and get this...when I went to the ER, I asked them if I could try O2, and they said that it doesn't even work for their CH patients. I said I have at least 30 friends who would beg to differ!! And I told them that it works better from a mask than a tube, and the doc said it makes no difference. I was like....oh this guy has no clue...
I've since printed out the O2 info to carry with me the next time!
In other news, I emailed my neurologist to ask him a couple of questions about my upcoming hospitalization. I told him that I was emailing him because I don't have access to a phone between the hours of like 8am to 5pm or later. When you call the office, they have to call you back, so it would be impossible to reach me. His email response was...University policy prevents me from giving ANY medical advice over email. Call the office.
*sigh* What part of I DO NOT HAVE ACCESS TO A PHONE is not clear here? Am I going crazy? LOL
~Lizzie
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fubar
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Re: What is going on with my head??
« Reply #12 on: Dec 10th, 2003, 12:18am » |
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Quote:Currently:
- parnate
- verapamil (240mg)
- topomax
- neurontin
- methergine
- melatonin
- migrahealth supplements
- Thorazine
- DHE injections
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Lizzie,
First of all, WELCOME!
Gotta tell you, that's a mighty scary list of current meds. I'm pretty sure my head would EXPLODE if I were on all of those meds regularly, let alone once or even within the same week.
It sounds like you're doing the right thing though, questioning the overmedication. I don't think doctors ever honestly consider this factor when they are faced with treating multiple symptoms.
If it was me, I would immediately get the O2 prescription secured and filled. Oxygen works like a wonder drug. I did not believe it, and it doesn't surprise me that doctors are skeptical, but you have to convince them. The O2 link on the left is everything you need to know.
I would also do whatever it takes to get that list of meds down to no more than 1 med in any one category (neurontin and topomax? wow). I don't think you've got a fighting chance at pain free days until your body is cleared out and stabalized.
I'm not a doctor, and I don't know exactly why all those medications are prescribed at the same time, but I'm telling you my initial reaction is 'holy sh*t, that's a long list'.
Good luck to you. Nobody should suffer like that, and it would be tragic if doctors are actually increasing your pain by over prescribing. It's YOUR body, you tell them what your going to do. They can't make you stay on anything. They just try to make you feel stupid for asking questions. Don't let doctors intimidate you.
Seriously, welcome to this crazy house. The worst thing we'll do here is treat you like family, so be ready!
-Fu
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Unsolved
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Re: What is going on with my head??
« Reply #13 on: Dec 10th, 2003, 1:24am » |
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I agree ... what a huge list of medicines. But then again ... when you go through some awesome pain, you'll try anything.
You give yourself DHE injections ? ( I do 2 ) I also take Methergine (6 tabs day). Hope you're spacing these 2 meds apart correctly or you'll be 'double-dippin' 
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Lizzie2
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Re: What is going on with my head??
« Reply #14 on: Dec 13th, 2003, 12:58am » |
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Hey,
Sorry took me a long time to reply...been having a rough time and haven't been on the boards much. I do agree that the meds are rediculous and I don't think any of them can be doing any good while I'm taking so many! I plan to talk to my neuro about it when I see him next.
I do give myself the shots of DHE and take 6 methergine tabs a day. I don't think I take them close together usually, though I don't remember...there is just too much junk to keep track of!! I get leg cramps from the methergine sometimes...
I'm checking into the hospital on the 29th of this month. Not going to be fun times, but I need help. Have been sleeping 2-3 hours a night for several months now, and it's starting to take a major toll on me. Tonight a friend IMed me to ask if I was alright because she said I didn't look too good today. I think I look more or less like a ghost with really dark circles and I'm losing weight like mad... I hope this stay helps because I can't take much more of this! Hopefully the neuro will be willing to treat ch or cph symptoms...or I think I will have to find someone who will...
~Lizzie
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Renee
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Re: What is going on with my head??
« Reply #15 on: Dec 13th, 2003, 1:14am » |
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I was recently diagnosed with cph and ch after suffering for 7 years.
I never got any result from neurontin, in fact my ha frequency increased while on the neurontin and i think led to a ch cycle.
My new neuro that I saw earlier this week got me on o2 and Indocine and then today called in for verapamil.
The o2 brings down the pain for me but doesn't take it away and the indocine worked miracles for 48 hours then back came the pain. I'm starting the verapamil and was told it would be 2 weeks before it kicked in.
Good luck and I agree with the others...GET OXYGEN!
Renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
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mikeyd
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Re: What is going on with my head??
« Reply #16 on: Dec 13th, 2003, 9:08am » |
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Yup Oxygen! Whoever said it doesn't work has their head up their ass and know jack shit about CH...oxygen works for a hella lot of us here....it is just more arrogant ER BS which many of us have experienced. I got all my med staff onside and I got a script from the doc that says OXYGEN on it...I take it to ER when I need an oxygen supplement. I just got a giant airtank yesterday but my damn regulator doesn't fit!!!
Oxygen is my second in command...Verapamil is preventative...if a CH breaks thru, I use my DHE nasal mist and the head for oxygen for 5 minutes of R&R...and they are gone almost every time...then the indomethacin for a nappy afterwards  .
I'd say stick with the oxygen tho....miracle gas!
Wishes for PFDAN
Mikeyd
P.S. - Oh yeah, I forgot to mention that the oxygen works BEST doing deep breaths and full exhale...all air out and full lungs in...REALLY DEEP BREATHS WORK, shallow normal breathing is less effective.
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| « Last Edit: Dec 13th, 2003, 9:12am by mikeyd » |
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Waging war with the beast is tiresome & painful but never boring ;-D
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mucho_pain
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Re: What is going on with my head??
« Reply #17 on: Dec 19th, 2003, 12:03am » |
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Sounds alot like a list o meds i have tried.... this is what finally worked for me and has been for two years now.
Verapamil (regular) @ 360 mg 2 time a day. I take 3 pills (120mg) when i get up in the morning and the next 3 (120mg) at 1pm. That usually does it for me. Pain free.
If the beasty sneeks up on me or i start gettin breakthoughs alot i up the dose by another 360 mg for a few days. I take those around 7pm.
Also have O2 which works if i catch it quick enough. And imitrex injections which i will do 1/3 the dose each time when needed.
I hate needles and was afraid to use the injection until one night i was hit so bad i thought i was a gonner. I finally said the hell with it and used the auto injector. SWEET!!!!! All pain was gone with in 5min. Ever since then i have used them.
6mg is a little much for me and using the imitrex tip, found that 1/3 the dose works just the same. Cool.
I have learned real quick about exceeding the max dose on triptans tho.... I was using zomig for a while. It didnt work since it took too long to get in my system. I would estimate when i was going to get a HA since they came the same time, on time, everyday.
I ended up with a dull boring HA for 2 days... really sucked. I was almost beggin for a full blown HA to get the pain over with.
When i first started the regular verap i was also taking lithium and weened off it once there was some control.
Dont get me wrong... i still get these dahm things but no where near the frequency or intensity as before.
Good luck and dont give up....
Greg
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