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1st Post - Landed here looking for help - Please

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Hi,

I apologize if this sounds like a ramble - I've been on topamax, but have decided to quit taking it. I can't stand it, it turns my brain to pudding.

I just discovered this site after decades of migraines and what I believe to be clusters. Only recently have I had a GP who'd even listen to me, but never the less, I'm starting to reach the end of my rope. I'm clearly not suffering as bad as many of you, but I'm just so worn down.  He at least prescribed Fioricet and Imitrex, which for the most part, were god sends.

I'm 41 and have had migraines since I was 9. Back then, they were classic migraines w/o aura. They'd come and go in clusters - I'd go years w/o having them. But the symptoms were classic - vomiting, unilateral pain, photo and phonophobia. In my late 30s, they seemed to start evolving, presenting symptoms of both migraines AND clusters at times. I rarely have classic photo/phonophobia anymore, but the stomach symptoms still hit me on occasion when I have a daytime headache.

But sometimes I'll wake up around 2-3 in the morning with raging pain, and I know I'm screwed. No amount of Imitrex or Fioricet works and I physically can't stand to lie down. It turns into a 4-5 hour long festival of pacing, vomiting, watering eyes, runny nose, ice pick to my eye, back of the head, throbbing, just on the edge of screaming and generally wishing I could knock myself unconscious. Symptoms of both migraine AND clusters.

The last bout I had like that prompted me to *finally* schedule an appointment with a migraine specialist/neurologist. I went in with high hopes, expecting to explain my symptoms, work through a course of treatment, but no, that didn't happen. He flatly told me there's no such thing as a mixture of cluster and migraine symptoms and sent me on my way with a prescription for Topamax. The final straw was when I asked, "Does Topamax have any cognitive effects?", he flatly said, "No".

I've tried the Topamax for about a week, but I simply can't stand it. I'm only at 25mg, 2x a day and I feel like a bloody moron. I'm an engineer by trade and there's no way I can "wait a month to push through the symptoms" - I'm a zombie all day at work, fading in and out, having a hard time even reading at times. The only reason I'm able to write this is because I haven't taken my evening dose and I'm not going to. Needless to say, that neurologist is an ass in my book who is now fired.

Luckily, the full on cluster (like) headaches aren't super common, but it seems like I'm always right on the edge of a migraine at this point. But I'm in constant fear of another headache like that last night-time hell.  I had moderate success experimenting with racetams in the past (reducing trigger sensitivity just a bit). Reading a recent article about clusters and 2-bromo-LSD tripped a long lost memory - when I was in my 20s, I experimented with extracting LSA from Morning Glories for recreational purposes. It occurred to me that I had few or no migraines back then. Further research lead me here.

I've reached the point where the pain is just such an unending grind, that cultivating or obtaining aforementioned substances is sounding like a good idea again. I can't believe it.

Thanks...

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2 of the immediate things that come to mind from your post are:

1) You have come to the right place.  8-)

2) That sounds like the worst specialist neurologist I've ever heard of. I knew that garden variety neurologists are commonly uninformed/misinformed about CH and the like, but for a specialist to be that that arrogant and/or ignorant...?! Topomax is absolutely notorious for it's debilitating brain pudding side effect.  :o

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You can do morning glories, or some equivalent, again.  See https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974.  (Most people here prefer RC seeds.)  But you will have to be off the migraine meds for five days (I'm not positive about the fioricet: Don't know what the butalbital does to busting).  Is the imitrex in tablet form or injection?  You'll have to be off that to bust, in any case . . . I'm just curious with regard to the CH or CH-like attacks you're having (those bad ones definitely sound like CH).  The fioricet would definitely do nothing for CH, but imitrex injections usually help. 

Please look at the other numbered files in the area (ClusterBuster Files) where the file I linked you to is located. #6 is about interactions with medications.  #1 and #3 are important.

Some folks here have had very good success treating migraines with busting.

I don't know anything about racetams.

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Hi and welcome to the board. I too am no fan of pudding head... or as we call it Dope-o-max.

Just wondering if you have ever tried oxygen to abort the killer night time attacks. If they are clusters... usually works.

In any case I do believe you could benefit from RC seeds. Read up. Ask questions.

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So I've only been poking around here a short time, but if I'm to believe the google search, there's not a single mention of the racetam family here. I became interested in them because of their similarity to other anti-epileptic drugs, while possessing none of the drawbacks. Given they're GABA agonists, improve ACh function, possibly modulates AMPA receptors, have neuroprotective qualities, I had to try.   

My experience with piracetam as a trigger reducer is anecdotal at best, but I wonder if it might potentiate LSA, LSD and other triptamines? There's anectotal evidence out there that it does. Given how cheap, available and safe it is, I'm kind of surprised of the lack of info here.

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Phreon,

++ Jeebs post :)  (just don't believe anything he says about his flying dog :)

Sorry to hear you hit the lottery on that neurologist.  Someone had to graduate at the bottom of his class I guess.

Many of us here experiment off and on with other chemicals that might help our CH, and communicate the results so others can see if they can duplicate successes.  That said, you might want to start with the LSA seeds (HBWR, RC) for more immediate relief.  Sounds like you already have some experience with them.

J

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In my Dope-amax stupor, I didn't consider the implications of quitting cold turkey. Holy ^$##%!   AND, I was out of my Fioricet Fri nite. Imitrex alone SUCKS and isn't as effective. Friday to Sunday head pain.

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Imitrex alone SUCKS

I'm going to re-ask CHf's question (below):

Is the imitrex in tablet form or injection?

..since your neuro sounds so lousy. Usually when it is reported imitrex doesn't work for a CH attack we learn that the slow acting tablets have been prescribed, not the fast acting injections.

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100mg tablets...  I've been thinking about asking for an autoinjector. But the insurance cost.... Only the tablets are in the formulary.

I should explain in better detail. When I wrote the OP, I was in the Dope-amax stupor. It seems that most or all of my headaches precipitate NASTY tightness in my trapezius or nearby muscles going up into my neck on the right. I had a nasty accident in the early 2000s that left scar tissue in there, so it's always tight. Stretching helps, but I've been so far behind the headache curve that I can't stretch w/o getting a massive headache.  It's important to state that I can have a sore neck and absolutely no headache, but *all* significant migraines/clusters leave my neck/shoulder feeling like someone hit the muscles with a hammer.  It's not just neurological pain - I've had people try to rub those muscles during a headache and tell me they're hard as rocks. Also, though I have a gimpy neck, I've had migraines preceding the accident by decades.

Fioricet seems to help quite a bit if I take it early enough. I think the muscle relaxing effect is the main theraputic action, though regular muscle relaxers do nothing but make me tired.

Imitrex generally works if I take it early enough, but I'm always reluctant to because of the unpredictability of the side effects. Sometimes I'm fine, others it wrecks my stomach, makes me vomit, makes me feel like someone is squeezing my neck. It *always* leaves me exhausted. I've tried other triptans, but even though at least as effective with fewer side effects, again, it comes down to insurance. I can't afford to pay $167 for a blister pack of Maxalt.

Because of how crappy Imitrex makes me feel (but minor in comparison to a headache), I always go for the fioricet first.  The problem is sometimes I wake up with a migraine - as soon as I awake, I know I'm completely screwed. By that time, my stomach has stopped and I'm in blinding pain. Night-waking headaches are always the worse ones. ALWAYS. They're, "Oh, shit, kill me now!" headaches. Searing pain, watering eye and stuffy nose on one side. Impossible to lie down. Relentless pacing, praying I can keep the imitrex + fioricet down long enough to have any hope of working.

I can usually tell if I'm going to get a headache. It isn't an aura, just a vague feeling that something isn't right or I'm succeptible. Though I can say that I've noticed strobing in my peripheral vision hours before a headache on the odd occasion.

I'm reasonably convinced the racetams + a choline source do help reduce my sensitivity to migraine triggers, but I don't think they do much, if anything for headaches on the cluster spectrum.

Thanks

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Yes the cost of the injections is ridiculously high, there's just no denying it.

Since 1999 countless CH'ers have been employing a supply conservation method that does cut the cost, supply issues and side effect risk by 1/2 to 2/3, while the doses remain highly effective. This is it:

https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1361807077

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Hey Phren! You are correct that the Trex tabs take a long time to work.  Usually by the time they kick in your episode is over anyway.  The injections do cost a lot more, I was dividing mine into 3rds (when I was taking Trex) but found that 1/3 was not enough so I settled on 1/2.  The injections work much faster (10 mins)  But be careful taking that stuff...its nice for preventative (well you THINK it is, but in the midst of an intense episode you will do just about anything to make it stop, even for just a couple hours) then you start taking more and more...then the side effects hit...not pretty.  My best advice is...if something isn't working to help you...kick it to the curb and move on to try something else.  Keep reading, there is so much great info on this site, and so many different options , you will find one (or a morph of 3-4) that is perfect for you.  Good luck sweetie! HUGS and PFW!!! :)

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Yes, Fabac's words of caution bring us back to DM's question about whether you've tried high flow 100% O2?

It has become the preferred abortive over imitrex for a really high percentage of those CH'ers who've tried it, it  allows us to detox from imitrex prior to busting, and is a good side effect free replacement in general. Check out the info CHfather has put together on it:

https://clusterbusters.org/oxygen-information/

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Hi Phreon,

Those horrible knots are not uncommon. I never found anyone or anyway to untie them when in cycle. Your injury may add to them? My neuro prescribed diazepam to help ease the neck pain. Once that knot appeared, it did not disappear until the cycle was over.

Properly used O2 is a life saver!!!!! Check it out.  :)

Also, if you regularly get hit at night your could try sleeping in a recliner. That helps a lot.

All the best!

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Maybe you want to start a new thread in the "Share Your Busting Stories" section about this.  I see you've looked at MoxieGirl's guidance for preparing seeds.  Can't go wrong following that advice, but let us know what you're planning to do. 

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