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        New Message Board Archives >> Oct-Dec 2003 >> Whew!!
        
(Message started by: aprilbee on Oct 7^th, 2003, 7:22am)

Title: Whew!!
Post by aprilbee on Oct 7^th, 2003, 7:22am

Thank you for all of the advise on the Neurontin, I had the worst night of my life!! I took 200 mg at bed time around 10:00, I was awake with a kip 7 at 12:00, then again at 1:30, then again at 2:20, then again at 3:30, then again at 4:45, I finally said fuck it and just got up and started getting ready for work...I have NEVER had a night like that since being diagnosed with CH, I'm going to guess it was the Neurontin- -I'm calling my Doc today,

Just needed to vent, I am so freakin tired!!

Title: Re: Whew!!
Post by TxBasslady on Oct 7^th, 2003, 8:22am

:(
Wow April, sorry you had such a bad night. I have never taken the neurontin, so can give no input there. Possible it was that the dosage was not right ??? I noticed that those here that take it are on much larger doses than 200 mg. But it probably is best to see your doc. But for sure you can't function on that amount of sleep.

Hope you get what you need from the doc. :)

I'll be thinking about you today.......meanwhile sending you lotz of pf vibes. Let us know what the doc says.

Jean

Title: Re: Whew!!
Post by aprilbee on Oct 7^th, 2003, 8:47am

Thanks Jean, will do!

Title: Re: Whew!!
Post by Dave_Emond on Oct 7^th, 2003, 9:11am

Aaaaaaahhhhhhh Dang it!
So sorry this only made things worse for you April!
Now, I'm in a quandry myself. Neurontin is what my doc is thinking of trying next on me. Not for CH, butfor this other unknown disorder that has developed.
I've never reacted well to medications, 90% of them usually only make things worse.
But, now I have no clue where to go from here. I was up to 120mg of Prednisone, been tapering for a while now and am down to 50mg now. But, am experiencing ALL side effects to serious degrees. People who know me well, can't believe it's me in this body. But, coming off the Prednisone, pain throughtout my entire body is increasing rapidly everyday. Can't even raise my head anymore.
So, Neurontin was supposed to be the next attempt to alieve pain until they figure out what is going on.
Can't finish question now
Dave

Title: Re: Whew!!
Post by Dave_Emond on Oct 7^th, 2003, 11:12am

... Okay, back now. Lost it there for a bit, hot shower has helped somewhat.
I wanted to ask April (or anyone else with Neurontin problems) if you had serious side effects to some of the same meds that were the worst for me? Basically, I'm trying to see if we share the same effects toward the same meds and maybe help me decide if I should attempt Neurontin.
Meds that were the worse: (none touched CH pain)
Sansert: Blackouts, convulsions, unclear thinking, suicidal.
Topomax: Seizures, convulsions
Tegretol: Seizures, convulsions, blackouts,severe dizziness.
Prednisone: Gained 15 lbs., rashes, swollen face, MAJOR ankle swelling, bloated stomach & acid, neck swollen, can't walk without assistance and lately neck nerve pain when lifting head, feel I'll pass out at any moment. Thinking clearly very difficult (my last line of defense).
These were the worst, many problems with other meds (over 40 types). Allergic to Codeine.
A few meds had no side effects, but didn't stop Clusters. Only minor relief from Imitrex Nasal and O2 for a few months, no help anymore.
I apologize April if this sounds self serving on my part, I'm truly sorry that the Neurontin only made things worse for you and do hope you find something that will take away your pain, my prayers are with you.
At this time I just don't know where to turn for help, or which direction to take as far as new medications. If Neurontin causes me more side effects, I just don't think I can bear this anymore. Annette and I are going to start "getting affairs in order" while I can still think clearly at random times.
Thanks for any advice or suggestions you or anyone else might have.
God Bless,
Dave

Title: Re: Whew!!
Post by UnsolvedEquation on Oct 7^th, 2003, 11:41am

I did Neurotin for awhile too. It made my clusters worse. More frequent and more painful. It was one of the medicines I will not do again (along with Keppra & Topomax). If you feel that the medicine is making your headaches worse, then it just might be !

Title: Re: Whew!!
Post by JDH on Oct 7^th, 2003, 11:59am

Dave,
I have been taking 900mg of Neurontin daily for the past month (not for ch's but for sciatica) and I honestly can't tell that it's doing anything for me. I haven't noticed any kind of side effects either.
I'm going to give it another week or so and if things stay the same then I'm going off of it.
good luck,

Jim

Title: Re: Whew!!
Post by ozzman on Oct 7^th, 2003, 12:13pm

on 10/07/03 at 11:12:19, Dave_Emond wrote:

Topomax: Seizures, convulsions
Tegretol: Seizures, convulsions, blackouts,severe dizziness.
Thanks for any advice or suggestions you or anyone else might have.
God Bless,
Dave

Dave, this is confusing, those two meds quoted above are anti-seizure medication and I don't I have ever heard that the medication you use to treat the illness causes the same illness as a side effect (except in theory in the case for homeopathy, but go to www.quackwatch.com for that answer). If that is the case yo might want to try a different avenue, since Neurontin is primarily used for partial seizures, post-herpetic neuralgia and neuropathic pain http://www.neurontin.com/

Just a thought.

Ozzy

Title: abnormal involuntary movementsRe: Whew!!
Post by Dave_Emond on Oct 7^th, 2003, 7:29pm

You're right Ozzy about Topamax & Tegretol being ant-seizure medications.
We keep a log book of all the medications that I try and what happens. On Topamax, we noted that during major CH attacks, I went into seizure type reactions or convulsions, not really knowing how to describe what was going on. Somehow, as I fell to floor, pushing my head as hard as I could, my body was "shaking?" and I managed to push my head under a heavy sofa bed, so far that it then fell back on me and pinned me underneath. (Now that is in the past, the situation and what happened is kind of a funny story we tell.)
On the side effects of the Topamax insert, in it's list, it mentions tremors or shivers, could have been something like that, Annette just wrote down what it appeared to look like at the time.
Same with Tegretol, side effects mention ... "abnormal involuntary movements", which appeared to us as seizure or convulsions.
I was taken off these meds right away and then took an EEG test because of these side effects. My EEG test showed no signs of any problems.
Most likely, since this was a while back in June & July of 2001, we didn't know the difference between seizures & convulsions as compared to tremors & abnormal involuntary movements. We just know from our records that I was doing something strange, and could only describe it as seizures or convulsions. I just know, I didn't react well to those. But, then again, I don't react well to almost all medications.
But, it's good you brought that up, Neuro was puzzled as well. Don't want those using or considering using Topamax or Tegretol to worry about having similair experiences. Annette just say's "You're weird" to me when I react so strangely to some meds diferently than others ... and I think she's right :-/
Doctor today wants me off the Predinsone before we try a new medication, we'll discuss if Neurontin is the option then. Will be trying Benadryl in the meantime, it should be safe and maybe help a little, and I'll try it if it can at least ease any of this. Otherwise, I have no choice but to try to put up with all this until I see another Neuro on the 13th.
Thanks for the thoughts,
I'm just weird :-[
Dave

Title: Re: Whew!!
Post by cootie on Oct 7^th, 2003, 7:53pm

Hey Dave yer not wierd...I'm the side effects queen now don't fergit....you wanna be king of side effects ? ;)Oddly enuff side effects for alot of meds is exactly what the med is used to prevent.....strange isn't it ? Myself I noticed some relief with neurontin 'at first' but felt very 'lost' or mildly out of it and high but it was manageable and was not on it for CH. (I'm a supporter....it's for disc problems) But esp when I got up to 3 a day (300 mg's) I really noticed it intolerable.....I felt unbelieveable tightness in my face and feet and hands and unstable and dizzy. Started to jus take it to fight the migraines (disc realted) and actually I never got anouther real bad one once I started the neurontin and it got rid of the spam lumps in my neck.....so it did 'sum'good. But my reaction to it got worse ta where I couldn't stand up or walk or think......barely could talk and got red patches on my face really bad. I gained weight on it too FAST within two weeks.....mostly swelling. When I stopped takein it I had mild seizure type jerks goin on which FREAKED ME OUT so my doc said for me to stay off it. Most I know on it have no side effects.......course there 'mostly' the ones that say it doesn't seem to be helping either. A few swear by it.......everyone is different ! I also can't do prednisone or lithium......I have most of the major side effects with alot of meds even anitibiotics ! (scarey) I can take codiene in smaller then normal doses for the pain and it works without messin me up......but not a normal dose or I am WHIPPED OUT and sick ! So see yer not alone in the side effects area ! It's not easy bein me Pam :-/

Title: Re: Whew!!
Post by Dave_Emond on Oct 8^th, 2003, 1:09am

Thanks for the info Friends,
I had heard somewhere before that medications for specific disorders/diseases/sickness can cause the same effects of the treatment you are trying to fix, but don't have anything to back that up, so didn't mention it.
Along with our records, we also kept almost every container/box of the meds. I was looking through them and came across the Imitrex pills I had been given a long time ago. On the box, it says " may cause rebound headaches." I used it for a very short time as it did nothing for the CH. I was episodic then, still confused about CH, not knowing any better I was still trying to sleep on my back, so we couldn't really tell the difference between CH attacks and Rebound headaches.
Thinking back now, I know I never had "headaches", only Clusters, up until recently, I had forgotten what headaches even felt like. Being chronic now, I still experience the same cycles as when I was episodic. Jan through March and then September. During these months my CH attacks triple in amounts and levels. This happened again last month, but over the past few days I've seem to be coming out of that "inner cycle" and am back to only around 8 attacks per day/night which I'm used to. I'm now starting to be able to feel regular headaches again going with this new unknown disorder that we're still in the dark about. Did rule out West Nile Virus today, and most likely ruled out Lymes (one last test not returned on that yet, but pretty sure it's out) and ruled out standard things like HIV, Shingles, etc.
Took the Benadryl around 5:30 this evening, was able to sleep for about two hours! Still woke in pain, but I'm already 2 hours ahead considering that's been about my average over the last 6 weeks. Will take some more here in a bit and see what happens.
Thanks for all the input everyone,
And April? How you doing? Please let us know what your Doc had to say and if anything different is going to be tried. Hope you find something to help.
Dave