New to the forum; Hello! my strange story:

[Anv1848]

Hello, So nice to find this forum. Thanks for making it happen!

I was referred here by a friend.

I have had CH for some time.

But especially significant in my case, was the fact that my medical staff misdiagnosed it and they thought it was epilepsy related. Well, in their defense, there WERE a host of very weird and troubling neurological things going on.

They had paraded me into all kinds of scans; MRIÂ’s EEGÂ’s many other things.

So what then happened was, worst of all, they slammed me with some fairly disturbing and debilitating meds Â… Depakote; Leviteractum; Keppra; Â… all of which took a horrible toll on my system. IÂ’m an otherwise pretty physically active athletic adult, who does not use any drugs; or smoke or drink alcohol.

So anyhow, 9 months after all the meds and many more tests, they then concluded itÂ’s a misdiagnosis; and now think (theyÂ’re still not 100% sure), itÂ’s CH.

They urged me to keep taking the drug Topiramate .. but I just flat-out HAD IT it with the stuff .. just awful side effects Â… I finally got the team to be on the same page with me: and agree to let me STOP the drug.

Anyhow:

Back several weeks ago, a colleague who had studied extensively on the continuing promising research done related to treatment of CH with mushrooms, talked it over with me Â… and managed to get me a sample Â… I set a day aside, had a friend stay home with me; and I took a very low dose, not really even enough (apparently) to justify calling it a trip of any kind; and thereafter, for a few weeks subsequent to that day, I had a greatly improved level of head-brain-neurological activity.

Now, about 7 or 8 weeks later, I can see that thereÂ’s a subtle dwindling of the attenuating effect from taking the mushroom sample setting in.

I am considering a follow up to the approach in few weeks, as the CH recurrences have become more prevalent.

IÂ’m encouraged by the materials, personal accounts, and reflections I have read already in the forum.

Anv1848

[CHfather]

Welcome, Anv.   It's great that you're getting relief.  Those anti-convulsants that you mention (or some of them, at least) are sometimes prescribed for CH, and they can be somewhat effective, although as you say, the side effects can be horrible.    Since you're not really asking any questions here, and you're not certain that you have CH, I'll just (a) wonder a little why you might want to wait a few weeks to dose again (I can think of some possible reasons, but I can also think of reasons not to wait that long), and also ( wonder whether you have oxygen to abort your CH attacks.  If you have CH and are still getting attacks, oxygen can be very helpful.  If you're not familiar with O2 to treat CH attacks, you can read more at the oxygen page under the black and white MENU tab on the left side of the page.

Please keep us informed of developments in your situation.

[Anv1848]

Hi CHFather,

Thanks much for the kind message.

Well, the only reason I am waiting to dose again is simply because it'll take a little while for me to acquire access of the materials again. (I don't have anything put aside)

"It's on its way" .. as the saying goes ...

I have not ever heard anything about the O2 approach ,,, further revealing my naivete on this, and other related matters. But I will surely explore.

Yeah, you're quite correct, some of the AED's (anti-epilepsy drugs) are used for migraine/cluster as well.

Boy, God bless the pharmaceutical industry ,, I know they do work some miracles; and I respect them for that ... but Crimony, some of the concoctions they devise are downright ruinous on the body ... Topiramate was particularly awful.

But again, that's me ... I dislike almost any med I've had ... my neurologist says a lot of folks handle Topirimate just fine.

It did the total effect on my that I DID not want .. shut me down and shut me off .. it made me basically a cross between being a mummy and a gargoyle ...

In stark contrast, the dose of mushroom I took brought on none of that ... and allowed me to retain much alertness and clarity;

I was able to continue working on my music scores and other projects, plus it did NOT disagree with me digestively.

Well, it was a small dose of course.

I await my next dose .. not sure when .. a week or two?

[CHfather]

Yes, read that O2 material and insist on getting a prescription from your doctor.  It will make a big difference.

At the first sign of an attack, some people quickly drink an energy drink or strong cup of coffee.  It can significantly lessen the severity of an attack.

Depending on the reliability of your shroom supply, you might consider rivea corymbosa (RC) seeds as an alternative.  Legal to purchase and possess, and easy to order, they're quite effective for many people and they have less psychedelic effects than shrooms.  I guess many or most people here would tell you that shrooms or LSD are the preferred treatments if you can get them, but as I say, seeds have worked very well for lots of people.  If you're interested in this alternative, read this file -- https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 -- and then get back to us.  (In general, you should read the numbered files in the "ClusterBuster Files" section of this board.)

Many people get a lot of preventive benefit from the vitamin D3 protocol, which you can read about here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

my neurologist says a lot of folks handle Topirimate just fine

  HA!  Most folks here would call BS on that (depending on what "a lot" means -- more than none, probably).

working on my music scores

Funny, when I saw your handle I thought of the Anvil Chorus, which was right around 1848.  Not a bad accompaniment to a CH documentary.

[Anv1848]

Thanks much for the invaluable links ... okay, did not know about the O2 .. the D3 .. and the RC ... approaches.

(there's a Dr. Seuss riddle somewhere there ..)

Yeah, well my neurologist herself explained to me she even takes Topirimate as has no problems ... that's one person ,,, maybe that's a lot? 

Oh, the "ANV1848" .. I typed it wrong ... meant to be "1824" which is Bruckner's birth year ..my favorite composer ... oops, sorry Anton ,,, messed up your birth year a bit ...

speaking of drugs, they did also try something called "Maxalt". Ever hear of that? It was ineffective and useless .. didn't do a thing, but it really hurt my wallet. And I have good health ins., .. but for some reason, I had to pay a lot out of pocket to buy that stuff.

[CHfather]

Maxalt is a triptan (rizatriptan).  Triptans can help as abortives, though not as preventives.  They work when they're injected; almost never work in oral form.  Imitrex is the most common injectable form.  (Triptans interfere with busting.)

It seems pretty clear that your neurologist doesn't know much about CH.  Maybe you'll want to try a headache center?

Someone just posted at another thread here about how badly topiramate had messed him up.  Thought of you -- but now I can't locate it.  If busting works for you, it -- plus O2 (and D3 probably can't hurt) -- is the best way to go. No side effects, probably not even any "tripping," if you use RC.

Modified 11/14: Ah, here it is: >>. . .  the 200mg of topirimate my neuro had me on daily that turned me into a useless almost drooling bag of bones. (I am down to 100mg daily at the moment) . . . << https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1376797890/2#2

[MoxieGirl]

Hi Anv, welcome to the family,

One of the biggest problems with Clusters, apart from the pain of course, is that so few people know what they are or have a clue for treating them. Even, and often especially, the "professionals".

I was on Topiramate for 18 months. I was one of the 'few' that could tolerate it. I'm not sure where your neuro got the concept of 'a lot' from, but I was told 25-50% of the people who try it get on with it. The best thing it did for me was to help me loose weight. I was on it for so long more for the weight loss than helping the clusters. It seemed to work OK for a month or two, then I'd have to up the dose. At 18 months I had well exceeded the maximum effective dose for clusters, and it stopped working altogether. That's when I turned to Mushrooms and RC Seeds.

If you're able to cultivate a relationship with your doctors where you are going to them well informed, and say 'this is what I need to combat this condition...' Like with the O². It should be the standard, first treatment, first words out of a doctors mouth. 'You've got cluster headaches. Here, have some O²'.

I really like my GP. I tend to go to her and say 'this is what I want to try next, any advice?'  Like when I came off Topiramate to start on mushrooms. I had already started reducing my dosage at a very rapid rate when I saw my GP and told her what I was doing. She advised caution, but knows I will research something to the N^th degree before doing it.

Prior to coming off doctor prescribed meds, I was seeing my GP nearly monthly for about 2 years or so, probably longer, and my neurologist ever 6 months. I've gone to my GP for an unrelated reason once since starting shrooms 2 years ago.

This stuff works. And I've found RC Seeds very effective, sometimes as much if not more so than mushrooms. So if you can get them easier, I'd say have a go.

Anyway, welcome again to the site. Ask if you have questions.

hugs

MG