DrTy2 Posted March 9, 2014 Share Posted March 9, 2014 Hi, I am an Italian Clusterhead, suffering from both CH and common migraine for 17+ years. First of all I'd wish to thank you all for the great amount of informative data I've found here, and the great dedication each one of you showed to keep up this great community I've just discovered. I devoted most of my life to studying the CH pathology, and I've become a true doctor a few years ago: I'm an Hospital Pharmacist, wich is not the usual community pharmacist you see in the pharma-shops, rather a medical specialist, wich is more or less what's a Pharmacologist is outside Italy. So my thread here is both to share my experience, and to let everybody know that even if medicine knows quite little about CH and migraines, I am still here to advice and help anyone as best as I can, about everything you may wish to know like drug interactions, safety of other prescriptions, scientific news and such. Send me a private message, or write down here, and I'll try to answer as soon as possible: we're all cluster mates, so that's my precise duty to help with all my knowledge. I was a migraine kid, as I already had migraine attacks even when I was a small child (I probably had my first attack when I was 6-8 years old), and I started getting my first splitting CH attacks when I was 15-16 years old. I usually get 1-4 migraine attack per month, and 3-4 months of CH each year (usually 2 attacks during the day and 2 attacks during the night/early morning), plus an increased number of migraine attacks just before and just after the cluster itself (likely one per week or even more), with some kind of basilar migraine during the whole cluster (low dull pain, clouded head, constant nausea, impaired vision and so on). I've tried almost all the coping methods (except O2 because is almost impossible here to get the 100% flow one), and the only one wich gave me relief were water treatment (I drink up to 4-5 liters of water daily), phisical exercise (I was able to skip out 2 years of clusters through intense daily activity, but I had to get 30+lbs of muscles in the meanwhile, so I couldn't keep it up with it for my whole lifetime), and energy drinks (with very limited effects). Usually I manage CH with Verapamil (just Isoptin tough, the generic brands are much less effective) at a dosage ranging around 300-500mg/die, plus Metilprednisone (15-50mg daily for no more than 1-2 week, usually while I slowly build up Verapamil dosage). I can abort a migraine attack with Maxalt RPD 10mg (sub-lingual Rizatriptan), and CH strikes with Imigraine (Sumatriptan: I found that half a syringe is enough most of the time), but I do very, very rarely use this last one (I usually "man out" the pain with ice, cold, screaming, punching the wall and biting a wet towel). I recently tried to "bust out" the pain with a very strong dried wild Psilocybe Serbica (Bohemica) batch (with due induction, a 1.2 dose is enough to get powerful psichedelic effects, and with 1.8 grams they sent me on a monstrous trip through the ancestral memories of the human race, aliens, and past lives for 6+ hours ). My first bust (5 doses, once each 5 days) wasn't successful, because I discovered the method when I was already halfway through the CH, so I was already under Verapamil and Sumatriptan treatment (and I didn't yet knew about the triptanes interaction, so I messed it up a bit). I couldn't truly bust it out because of the above reasons, but they greatly helped me through one of the most devastating and unexpected clusters of my life. I had the slapbacks and all the "side effects" (wich by the way, I truly love, as they changed my view on life and they vastly improved my memory and overall mental acuity), but I got a lot of pain relief, so when the next cluster come up 2 months ago, I decided to give mushrooms another chance, this time without any other drugs interfering (nothing at all). Before the cluster itself stikes, I usually notice an increased frequency of migraine attacks, so as soon as I saw the "pattern", I took a solid dose of shrooms (1.3), and they immediately stopped all migraine attacks from the day after, and removed the daily "veil of fog" I had on my brain. 2 weeks later the cluster truly manifested itself, and I got another smaller dose (1.2), and even with small slapbacks in the next 2-3 days, I managed to live it out pain-free for another 2 weeks with just 2 additional doses (1.0 and 0.8 once per week). I don't know if the cluster is truly busted, but up to today I had no true CH attacks, no real significant pain, no morning cold pain showers, and no nighties: just a couple of mid-sized migraine attacks (wich I had to endure without Rizatriptan), and some small "electric bursts" through the head during the usual daily cluster hours. As per day 31 since the first cluster signs, I had no need to take Verapamil, wich for me, is a great success, even if I would later need to take it, if shrooms should not prove to be enough. Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 9, 2014 Share Posted March 9, 2014 WELCOME!!! A pleasure to have you here! And a pleasure to read of your busting success. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted March 10, 2014 Share Posted March 10, 2014 It's great to have you and your pharmacological expertise here DrTy2, and I too am very happy to hear how well the busting is working for you so far with this cycle. Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 11, 2014 Share Posted March 11, 2014 Hey doc -- A couple of folks here, both with chronic CH, have found great results from an herbal concoction. Long story, which can be shared with you if you are interested. This thing contains something like 17 different natural ingredients, and we have no idea what might be causing the very positive results. The sample size is presently very small, but more people will be trying it. If it continues to be successful, do you think you might be able to look at the ingredients and form some ideas about which might be helping? Or maybe if it's worth it you could get some researchers interested in it? Just wondering . . . Quote Link to comment Share on other sites More sharing options...
razorPP Posted March 11, 2014 Share Posted March 11, 2014 Hello and welcome, I am taking mamajuana and I'm having very positive results. There seems to be something about mamajuana that is blocking the pain receptors around my right eye , brow and right temple area. I am chronic and cycle daily with the most intense hit at 7 pm. I take D3 regimen daily and HBWR sometimes and mamajuana twice a day for three weeks. Your input would be appreciated. Quote Link to comment Share on other sites More sharing options...
Purple Posted March 12, 2014 Share Posted March 12, 2014 Buongiorno e benvenuto dottore Ty2 It's great [smiley=2vrolijk_08.gif] to have you on board with us, I'm certain your contributions will be precious... there are a few old threads I would be curious to have your opinion on... arrivederci Quote Link to comment Share on other sites More sharing options...
DrTy2 Posted March 12, 2014 Author Share Posted March 12, 2014 I actually read through that Mamajuana article already, and the only idea I had it is that this concotion is some kind of hormonal replacement therapy, as most of the herbs included possess effects that are quite clearly imputable to sexual hormones activity. Alcohol itself is probably required to extract the active ingredients from the herbal products (in other words it's an alcoholic extract), wich is quite reasonable, as many hormones are quite idrophilic, but still very much lipophilic at the same time, so alcohol it's probably the best chemical to extract them. There are some recent studies pointing out how testosterone supplementation may help subside CH pain for a very short period: http://www.ncbi.nlm.nih.gov/pubmed/16732838 This could also explain why having an active sexual life may help reducing CH attacks (not the orgasm thing tough, that's probably due to the massive oxytocin vascular effect). So all in all Mamajuana activity could be related to the male hormones it contains, or because it helps your body produce/regulate them, much like soy milk/extracts help women reduce menopausal side-effects. Also it could explain why its effect is so much short-term, as it only helps easing the pain momentarily, but then hormones are very rapidly metabolized and eliminated from the system in just a couple of hours. Quote Link to comment Share on other sites More sharing options...
MimiP Posted March 17, 2014 Share Posted March 17, 2014 Thank you DrTy2! Thank you all for sharing your research. I'm new here and very glad to have joined this supportive and studious group. I've been a ECHer 34 years and was in remission for 5, my longest ever. I came out for 4 months in June 2013. It was my worst, complicated by the fact that my fantastic Doc retired. I really did want to die. I don't want to do it the way I did this last time so I'm doing my homework now to be prepared for the next time. Do any of you have suggestions on where I might read about residual side effects from Verapamil, Prednisone, Keppra (Levetiracetam)? Experiencing some pretty painful joints in hands and feet since last October. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted March 17, 2014 Share Posted March 17, 2014 I've been a ECHer 34 years and was in remission for 5, my longest ever. I came out for 4 months in June 2013. It was my worst Well that sounds like a common, familiar (but not guaranteed!) pattern for a long time CH'er, what with the remissions becoming longer, but when the beast does show up again, he decides to hang around longer and with increased ferocity. You sure sound like a prime candidate for busting. With any luck you won't have to find out though for another 5 or more years, with the remissions continuing to extend. Heck in 5 years the promised future will be here and we'll all be able to just hop in our hovercrafts or strap on our jet packs and pick up some vitamin M at the corner store. ;D If I go looking for side effects I hit WebMD, Mayo, etc., but I try not to look at them because they are a real downer , and I hope my prescription drug days can just be over anyways. I imagine you're well aware that prednisone is the mutha of all the horrible permanent side effect bad guys (if it has been taken at high doses for a duration longer than the standard short burst). I can attest to it's ability to mess with an immune system mightily, and others here can show you their hip replacement scars. :'( Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted March 17, 2014 Share Posted March 17, 2014 Hi Mimi What Jeebs said on the prednisone!! Not sure of long term residual effects of keppra but my wife suffered a grand mal seizure about this time last year and keppra is what her neurologist put her on.....within days her joints and bones hurt so bad she had to DC it!! Quote Link to comment Share on other sites More sharing options...
DrTy2 Posted March 18, 2014 Author Share Posted March 18, 2014 Thank you DrTy2! Thank you all for sharing your research. I'm new here and very glad to have joined this supportive and studious group. I've been a ECHer 34 years and was in remission for 5, my longest ever. I came out for 4 months in June 2013. It was my worst, complicated by the fact that my fantastic Doc retired. I really did want to die. I don't want to do it the way I did this last time so I'm doing my homework now to be prepared for the next time. Do any of you have suggestions on where I might read about residual side effects from Verapamil, Prednisone, Keppra (Levetiracetam)? Experiencing some pretty painful joints in hands and feet since last October. I need to know more before expressing my opinion: dosage (wich varies wildly among CH patients), therapy lenght, how old are you, and other pathologies you may have. Feel free to PM me, if you want more privacy, or we can talk here if you want to share your situation with the other users. It's also very important to know if you started your therapy dosage gradually, and if you reduced them gradually or abruptly: Verapamil, cortisone, and Levetiracetam all require progressive dosing in and out. Also I need a more detailed description of the joint pains: are they constant or episodic? Do they worsen under mechanical stress? Do you have prickling, feeling of electric discharges, loss of senistivity on fingertips, nerve pain? Levetiracetam itself does not provoke joint/bone pain, just very rarely myalgia, nor does Verapamil itself, expecially if you stopped taking it 6+ months ago. Cause could be Cortisone, but there could be another uninvestigated additional disease, wich steroids may have worsened, for example ostheoporosys, diabetes or gout. Quote Link to comment Share on other sites More sharing options...
Purple Posted March 18, 2014 Share Posted March 18, 2014 just a tought like this, I suffer joint pain very much myself also, and I know some others on this site also do, might be just age... I'm 52... that pain has been there since my teens (maybe before also?) but has started to be a real issue a few years ago (6?). I experienced substantial and lasting relief (I figured anti-inflamatoire effect) (10 days) to my joint pain when I busted with lsd, and a similar but little weaker effect with psilo. I mean substantial relief! I usually drop ibuprophène 400-1000 mg daily to manage a normal walking capacity for my joint pain (sometimes I don't for I suspect intestin problems due to ibuprophène...) also, this joint pain seems to be related to weather changes? or other parametres, some days stronger, some days ok, some I can't walk(edit: precision: somwhat of a metaphore, I still can get to point . I'm scheduled for a blood test to check arthrose or arthritis, not sure, as suspected by my GP, but I keep delaying doing that. I quit verapamil and other crap like this years ago when I joined here but hadn't took it for long anyways... to complete info LOL, I'm ECH since age 18, no meds but... I'm Not at all seeking advice about my joint pain... nor for my case in any way, (I'll manage), but for general and community thinking if anyone grabs my thought. I'm throwing this out here to ask: - could joint pain be related to CH? - is there any possible link between joint pain cycles and CH cycles? - anyone else felt relief to joint pain with lsd or psilo? - does mamajuanna has similar effect on joint pain? - would that be somewhat like microdosing (mamajuanna that is)? :-) Quote Link to comment Share on other sites More sharing options...
DrTy2 Posted March 19, 2014 Author Share Posted March 19, 2014 I'm throwing this out here to ask: - could joint pain be related to CH? - is there any possible link between joint pain cycles and CH cycles? - anyone else felt relief to joint pain with lsd or psilo? - does mamajuanna has similar effect on joint pain? - would that be somewhat like microdosing (mamajuanna that is)? :-) 1- I don't think so. Occam razor suggests me that years of cortisone treatments could be the cause instead. 2- Yes, because of cortisone, probably. Still if you already suffer from an articular disease, the excess of stress your body endures during clusters, will probably worsen it tough. 3- There are some new researches pointing out how Psilocybin and LSD could possess anti-inflammatory properties, so yes, they could help ease the pain. 4- No real scientific studies here, but given the large amount of herbs there and what they're supposed to do, well, yes, it could be. Would be interesting to hear from someone who's testing it. 5- Microdosing is somewhat different from taking a drug under your tongue. Sub-lingual administration is a way to ensure wide bioavailability of a drug, so it's actual blood level may even be higher than ingesting a larger dose. Quote Link to comment Share on other sites More sharing options...
razorPP Posted March 19, 2014 Share Posted March 19, 2014 With MJ, I have noticed less knee pain in general, and more flexible. I have a one knee that knows when it going to rain sometimes. I see if happens again. Quote Link to comment Share on other sites More sharing options...
Ricardo Posted March 19, 2014 Share Posted March 19, 2014 I'm throwing this out here to ask: - could joint pain be related to CH? - is there any possible link between joint pain cycles and CH cycles? - anyone else felt relief to joint pain with lsd or psilo? - does mamajuanna has similar effect on joint pain? - would that be somewhat like microdosing (mamajuanna that is) Joint pain being related to CH does not seem out of the question to me. More specifically, both CH and joint pain could be affected by abnormal serotonin levels. Seeing as how it seems like our serotonin levels are at different levels during cluster periods than non cluster periods and serotonin levels can effect join pain I would not be surprised to see a link between CH pain cycles and joint pain cycles. One study I read found that there was a huge amount of CH'ers who listed clinical depression as the 2nd biggest symptom they have. http://www.buzzle.com/articles/depression-and-joint-pain.html http://www.psychiatrist.com/pcc/brainstorm/br6304.htm I don't have much pain besides my clusters so I can't personally answer the question about getting pain relief from Psilo or LSD but it would make sense. Balancing serotonin levels could do it, but I would think that also lowering the inflammatory TNF levels (any drug that hits the 5ht2a receptor "superpotently" lowers TNF levels) would definitely do it. Mama Juana's effect on joint pain (or anything else) or what microdosing amounts of it will do is anybody's guess. I am hopeful that this is something that will really help us, but I encourage people to remember that we've had a handful of people try this who seemed to get help. But that's it. There has been no large groups of people who have tried it and the only person that I have heard of that has taken it for any length of time is the original person that Dallas Denny knows. So far the reports make it seem very promising, but as of right now we don't have enough info our experiences to say this is going to be helpful for most people with CH. (in my opinion) -Ricardo Quote Link to comment Share on other sites More sharing options...
alleyoop Posted March 19, 2014 Share Posted March 19, 2014 I encourage people to remember that we've had a handful of people try this who seemed to get help. But that's it. There has been no large groups of people who have tried it and the only person that I have heard of that has taken it for any length of time is the original person that Dallas Denny knows. So far the reports make it seem very promising, but as of right now we don't have enough info our experiences to say this is going to be helpful for most people with CH. (in my opinion) My sentiments exactly Ricardo. Nothing wrong with delving into this further, but let's not get the cart before the horse. Quote Link to comment Share on other sites More sharing options...
Tiggy Posted March 23, 2014 Share Posted March 23, 2014 Wow, what a fantastic forum. Been an episodic CH sufferer for 20 years but started with TN when I was 19. Luckily been in remission for a couple of years after having a CH episode that lasted for 4 months which was so intense it left me wrecked. I am so glad to find this forum. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted March 23, 2014 Share Posted March 23, 2014 Hey Tig, good to hear from ya. A remission that lasts a couple years or more is fortunately pretty common for an episodic after 20 years or so with CH (as are the unfortunate extended bouts when in cycle, and the increased intensity). [Edit: DOH I just came back and realized I went all Deja Vu on y'all here, as I had made the same observaton in this very thread a week earlier]. Here's to some continued really extended remission time for you (we can always even hope for complete burnout, but I'm of the mind we should remain armed to the teeth with preventives / abortives for a quick response counter offensive in case a surprise attack comes our way). If it does come back at one point, now that you're hanging around here, I bet you'll pick up some powerful ways to deal with it. 8-) Quote Link to comment Share on other sites More sharing options...
Tiggy Posted March 23, 2014 Share Posted March 23, 2014 Thanks Jeebs Quote Link to comment Share on other sites More sharing options...
Sergical81 Posted March 24, 2014 Share Posted March 24, 2014 Great thread. I am PF since August using your advice. I think about you all everyday. Quote Link to comment Share on other sites More sharing options...
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