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Wasn't sure where to put this...Cluster headaches

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14 replies to this topic

#1 BillKaneEMT

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Posted 17 February 2012 - 02:02 PM

Migraine/Cluster headaches/"suicide headaches". You may have had them, or known someone who had them, or treated a patient with them. A friend of mine gets them regularly. She's been prescribed a number of meds, had thousands of dollars worth of treatment, seen several specialists. Most of the treatments offer some relief but it's always short term and when she gets them (the migraines, not the treatments) anything above candlelight or a whisper causes debilitating pain.

Some wonderful young fella posted the following statement to her facebook page:

"There is a cure, an absolutely proven cure, too bad they're illegal. Magic mushrooms will stop a cluster as it is happening and stave them off for up to a year. Too bad they're hard to find and all. lol"

My friend is not stupid and I'm sure she wouldn't ordinarily run to a local drug dealer or anything but there are a couple of issues here. First, crippling pain can cause people to make errors in judgement they would ordinarily avoid. Second, I googled for a bit trying to find data to show that poster was incorrect and all I run into are websites full of testimonials from people saying "LSD/psilocybin cured my cluster headaches!". What I'm hoping for is that some of you have heard this and can verify it's a load of bs or that it might be true in some cases but is nowhere near "an absolutely proven cure". I'd prefer the first but the second would be acceptable as well. I just don't want to make a statement of either without hearing from someone more experienced than myself. Damned internet is full of people espousing the use of psychedelics to cure their headaches and they keep referencing "clinical studies" but the studies always seem to be either in progress or carried out by 14 guys in a geodesic dome and published at Burning Man.

Of course, in the unlikely event that the guy is correct and it is a genuine cure-all for cluster headaches then I'll just have to keep my big mouth shut. After I call him on his inappropriate use of ~lol~ naturally. Thanks in advance folks.

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#2 systemet

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Posted 17 February 2012 - 02:45 PM

I don't know if this was evaluated clinically before either became illegal. LSD has structural similarities to ergot alkaloids which are commonly used to treat migraine and post-partum hemorrhage. These include ergonovine (which many EMS services used to carry for PPH), ergmetrine and methylysergide (sp?).

I think these drugs are still used, although I'm not very educated on the current trends in migraine management beyond fluids, maxeran and NSAIDs.

So, in the case of LSD, there might be some theoretical similarities to "effective" medications. Medications that wouldn't cause 12 hours of hallucinations and possible jail time!

I'm not sure about psilocybin. It looks quite different structurally. However, I believe it also has serotonin receptor effects, which I think are what's important here. [These drugs also have effects at dopaminergic and alpha receptors, which may be relevant.]
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#3 DwayneEMTP


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Posted 17 February 2012 - 09:35 PM

You know what Brother, I don't think that she's stupid at all. Anyone that has had these knows that you finally reach a point where you will do absolutely anything to make them stop, and the rules of the world be damned.

For most of my life I suffered from migraines that lasted from 12-18 hrs and delivered such exquisite pain that I most often lay wishing one would finally kill me. My doc told me to go to the ER when it happens to get treated. I tried once, but was instantly labeled a drug seeker and left to sit in the waiting room. I ended up, and I swear that this is true, crawling on my hands and knees, vomiting all the way, out of the ER to try and climb into my truck to get someplace dark. I didn't make it and ended up spending the night under some bushes outside of the ER doors...the only cool, dark place I could find. Not my proudest moment, and if you've never had these headaches you probably won't understand how it might happen.

I spent most of my life trying different antidepressants, anti seizure meds, anti migraine meds. My brother in law asked me to try http://altmedicine.a.../a/Arginine.htm , though I don't remember the brand.

I had no faith in it, I only bought it because he was selling it as part of one of the multilevel marketing companies he was involved with. Within a few weeks I noticed that the headaches started changing, feeling different, and in another week or so, they were less severe and only lasted about 4-5hrs, and perhaps a month after that, they were gone completely. Up to that time I'd never known what it was like to be pain free as I had painful, non migraine headaches daily my whole life as well.

I took this for the few years, and it worked really well 'it seems', but if I didn't take it for a week or so the headaches started coming back. After about 2 years or so, strangely, it started giving me headaches. If I didn't take it, I would remain pain free. But being terrified of going back to where I was before I kept trying. Finally I decided to trial reducing and then eliminating it and now have maybe one or two migraines/year lasting 2-3hrs and if my others were a 10, these would rate perhaps a 6-7. And that has been the case for the last 5 years or so.

I've spoken to many Dr.s about this and other than it's vasodilation properties none had any idea even what it does, much less why it may have helped.

And of course, the pink elephant in the room is that it may not have helped at all. I was 40ish when I started taking it, and many find that their migraines taper off at that point anyway. I also didn't document when I took it and how dosing times related to the times that I did or didn't have headaches. My experience is all 'it seems like.'

Having said that, none of the life that I live and love now would be possible if I went back to the way that I was, so perhaps it's worth a try? It's relatively inexpensive (I think it cost me about $60/mo and would have gladly paid 10x that), I can't find anything that causes concern for significant risk, and it's easy.

Though I hope that if she does try, that she will be smarter than I was. Document the dates, times, severity and duration of her headaches...starting now, and then the dates/times of her medication. In that way she can truly see if there is an effect or not.

And I hope it goes without saying, though I'm going to say it anyway. I'm not a physician, only a regular guy that's been down this path. I am not recommending that she take this product, but only relaying my personal experiences.

No treatment should be undertaken unless every effort has been made to diagnose her condition. Any treatment should be discussed with and monitored by her physician, as well as any change in these headaches should be reported to her doctor as well. Ok, that should do it.

Just some thoughts.

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#4 BillKaneEMT

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Posted 17 February 2012 - 11:13 PM

Thank you both. I'm going to pass along what you've said immediately and I've also decided not to start an argument with this guy. My friend is capable of making her own decisions about that sort of thing and, well... it's a rough situation. Last bit of relief for her was some kind of blockers injected into the base of her skull. It granted 10 consecutive pain free days. These headaches are brutal. Hopefully she'll have better luck with what you used Dwayne. Seems like all of these treatments are just so short term. A week or so later it's back to the agony. Anyway, I'll pass this info along. Thanks again!

edit: regarding the last point, she has a neurologist she sees every other week. I'm sure he's a good doctor and all, he just can't seem to offer a long term fix. It's not like he doesn't try, he's tried a bunch of things. Damn migraines.

Edited by BillKaneEMT, 17 February 2012 - 11:16 PM.

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#5 nypamedic43

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Posted 17 February 2012 - 11:16 PM

I also have been down this road...more times than I care to count. When I was younger I would get cluster headaches because of eye strain from reading alot in high school. As I got older they seemed to subside in frequency for a number of years. Then I go into medic school...with TONS of reading and they started to come back with a vengeance. So I went and had my eyes checked and changed my glasses ( I now wear wear bi-focals...no snickering Dwayne!!)

The headaches havent decreased at all since I changed my glasses. However, I can tell when I have one coming on and I try to catch it quickly. I take an OTC migraine med and have a cup of coffee. Between the 2 of those, I can usually stop it before the nauseating pounding really starts. Sound bothers me more than light does and when I have a headache and the pager goes off, it's like someone takes an ice pick and stabs my head repeatedly, kinda like the shower scene in Psycho. I had one the other day that I didnt catch in time and sat at the desk at work with my face in my hands, ballin like a baby.

I feel her pain. I know it isnt easy for her...or for anyone close to her to just sit and watch. And its frustrating when the meds you're taking dont work well. She might also want to dig around in her family history and see if anyone in her direct family (parents, grandparents, siblings) have them. My Dad has them as did my Grandmother...and I have, unfortunately, passed them on to my son. My borther gets them and so does my neice.

I read Dwaynes article. It's interesting. If you click on the hyperlink for migraines there is an herb thats mentioned that has a side effect of headache...imagine that lol.

I hope she finds an answer soon and finds some relief.
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