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Welcome 01/25/2017
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All Activity
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- Today
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The Vitamin D3 has definitely been helping! I don't have O2 set up because I on have a PCP and it's a long wait into the nearest headache clinic. I read about welding oxygen but since the D3 is lessening the severity of my attacks I decided not to pursue O2 right now. We also live in an RV at the moment and I don't want to risk blowing us up :-D LOL! It is so annoying the suggestions I get and I try to keep them in perspective, my friends just want to help. But it does get a little maddening! No I don't need to cut gluten, red meat, dairy, blah blah blah!) You guys are an awesome support!
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Hi Moxie, thanks for your reply and info about your busting experciences. What interests me a lot: how do you manage your cluster headaches while sailing?
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Welcome! Sorry you need to be here, but glad that you found us. I have not heard of SAM-e. Is that something being discussed online? Is it a pill? Yes, that grain of salt is a good idea. Ok, looked it up. s-adenosylmethionine Primarily used vitamin supplement for arthritis and depression. Then many other 'uses; added to that. Nope not tried it and not likely to either. At least until there is some real data on its' effectiveness. The D3 Regimen, when taken in it's entirety is very helpful in reducing intensity of hits and for some even ending cycles. And It is good for you. I suspect that most if not all of us have gone thru the 'I had those once' thing on more than one occasion. I also suspect that many are saying they had headaches for two weeks or something. Not the same at all. They just think that they know and have had what you are experiencing. They are so wrong. While very annoying, we can at least be happy for them that they are wrong! To me, the worst part is all the suggestions on how to treat your "headaches'. Well, first, they aren't headaches!! And no, your Tylenol will not work. Nor will your Oxy. Do you have O2 with a proper set up? That can be pretty vital in cycle. Glad that you have been reading here. There is a wealth of information collected overs years with input from sooo many CHers.
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You are welcome!
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I agree that the parasitic predators that depend upon people's ill health to exorbitantly profit are very low. I appreciate all your research on the subject and it definitely makes me pause almost as much as the $500 a month makes me pause. Actually $500 a month just keeps me away from it totally. One notion that I have in the back of my assessment of this is that when I showed the medical journal article to my neurologist that specializes in headaches she told me that the lead researcher of the panel who led the FDA approval was her Mentor back when and that she had complete confidence in him. Never the less, I'm not rushing into this by any means and it does sound like there's a large possibility that these guys are scamming us. Thanks again for your research and for relaying it. I apologize for any typos that might be in this message but it's late I'm tired and I do not have the patience to try to edit these little windows.
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Someone told me they treated their cluster headaches with something called SAM-e. Has anyone tried this or heard or it working for CH? Granted, I take all advice with a huge grain of salt. I recently discovered that what I thought were migraines are actually cluster headaches. I'm sure you can imagine the huge relief I got from reading all my symptoms and struggles over the years and finally having a name for what I was experiencing! I've been on the Vitamin D3 therapy and taking Energy Shots at the first sign of my attacks (usually an hour after I fall asleep). They seem to be getting less severe, thank goodness! However, had anyone ever found that as they share their story that almost everyone has suffered from "cluster headaches" at some point in their life? I don't want to call these people out but I really want ro shake them and say, "I'm not sure we're talking about the same thing! Anyway! Just wanted to check on the SAM-e and maybe rant a little :-) I cannot express how grateful I am to have found this site once my CH broke out of their usual patterns and came after me really hard. I've poured over all the forums and links and advice and it's kept me sane! Thank you so much!
- Yesterday
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Oh Swiftlaw, that bites. I can certainly understand the reason you did it. Pretty darn brave I think. From what bit I know, yes, it will stop. Do you have O2 and are you on the D3 regimen? I don't re-call, sorry. Both are great and should help. In the long run especially the D3 stuff. I find that caffeine definitely helps with the shadow. And a heating pad on the neck is a good aid. My neck will sometimes to ache for quite a while post cycle. I use heat and Ibuprofen for it. Sometimes at prescription dose - 800mg. Not long term or daily, but occasionally at that level. None of that stuff is good for your body daily. But, a doctor will often prescribe the 800mg for a week or two with an injury with inflammation. I have also found that head position when going to bed is of major importance to me. I turn the pillow on edge to get the right 'fit' for relief. Have you considered seeing your doctor about this?
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Re visiting this issue. I have been careless with the Triptan injections. Here's why - I cycle once a year now - up to 12 weeks starting in early Spring. So, all last year I did not discontinue my Sumatriptan injection prescriptions. I stockpiled. The cycle started in late April this year (2017) in June I had a very rare chance to take my 14-year-old to London and Paris on a ten-day trip. I loaded up my suitcase with the injections and hit at least every day - sometimes 2 times a day and also used the Imitrex pill as a prophylactic - each for 10 days straight. The first rebound, when it came, was so horrible I could not stop myself from using another injection to fight back the rebound - then when the CH broke through the Imitrex barrier - it was like white light - I was screaming out loud - a new level of pain and I know it scared my son a lot. Stupid ? OK, but I did not want to have to bail on my boy while in the Eiffel Tower or interfere with his first trip to Paris. And I had not been thorough on these boards on the side-effects or actually read and digested Denny's post. Now back 3+ weeks and the rebounds seemed to dissipate after I took them on cold turkey with no meds for 2 days a break and then 2 more days. Now 2+ weeks later I have developed a nighttime hit every night at 2:30AM at KIP 4-5. These I can put down with ice on the carotid and maybe some caffeine, however I have developed a permanent all day shadow and a sore neck now for 10 days. I have not been taking the Imitrex but I feel like the medicine has me in a long-term downward spiral. This continuation of the cycle is terrifying me - it will stop right ?
- Last week
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Keeping tabs on the beast. July 24 is three months in cycle. Heavy triptans use for 10 days. Cycle seems to be extended.
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Sevral neurostimulator are on the market. In first place for migraene. Gammacore claims to lower CH frequency by 50% or so and should even be able to abort an attack. Gammacore original from europe 2011/12 turned out to be just USLESS for us. All positive threads do end after just 2-3 entries. People saying the unit may be successfull for the very first days just do turn rapid a usless junk! In all forums I've checked so far one can't find not one CH using this unit on a continuing base. Often called bullshit be whom tested... None of those units do any good to us. imagen gammacore beeing on your the market approx. 15 years and this site did not report anything about this unit. Or is it somebody beliving european CH are hidding a successfull treatment. Another unit called visto, same shit to us. A huge dam fu.. scam. Be aware before flushing a couple of 100 usd/month down the hill. What makes me especially sad is the fact people trying get profit ou off our pain. Yes I do call them assholes. If needed I'll confirm the assh... written! Thete are enough challenges in live. I do not need such people never ever Urs
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Weirdness to the max. But interesting.
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Hi Ken, I have a saying. 'No two cluster heads have the same symptoms, and just as soon as you figure your's out, it changes.' in my most humble opinion and experience, the best experts on clusters are right here on this board. You won't find anyone on the planet who understands the beast better, and knows how to kill it quicker. Or, at least put it in chains for a time. I was very fortunate in that I had a GP who had a friend with CH and knew exactly what I was describing on my first visit about it. She was also willing to let me try what I wanted, and fully supported me. So when I said I was weening myself off Topiramate and was going to take magic mushrooms, she said 'cool'. (or something to that effect, probably 'OK') It also always amazing me how the medical experts don't know the basics - oxygen + energy drink. Simple. The D3 Regimen is great, well worth trying. I micro dose with mushrooms. Usually take about 0.2 grams a day. It can take 5-10 days for enough of it to build up in your system before you notice an effect, so be patient with it and be consistent. Don't miss a dose, and be aware of it not working at all if taking certain medicines, like triptans. I started with the typical weekly busting of shrooms and seeds, and that worked great. But I like how I don't get any trip with the micro dosing. When I'm in the mood for a trip, a larger dose is cool. But mostly I just want to manage the attacks (I'm Chronic btw). I'm sailing to Belgium in August. I live in England and have a 7 day sail booked to cross the channel, go to France and Belgium and back to the UK to get my coastal skipper certificate. Really, really can't wait. MG
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Hi Spiny, thanks, you're right. Writing it down and talking about it with other clusterpeople helps a lot. "You can't control the situation but you can control your response..." hits the spot for me! At the moment I'm trying to tame the beast with microdoses of magic truffels (following 'the method') and I look forward to the outcome. I will soon ask for melatonin too, when I see my doc - the ones free of prescription are too soft: 0,3 mg - makes a lot of sense to me with my delayed pattern of sleep. Urs, interesting train of thoughts... Regarding Europe vs the US I'm not sure if the one or the other health system is better than the other. In Belgium we do have a pretty good health system, OK in terms of quality and service, and very good in terms of costs. I didn't pay much for my MRA scan for example (without having to bring in a private insurance). Also we have a few fine universities and high end hospitals. But maybe there is a lack of funding for investigation (read: money to earn?) on the subject. What I do know is that there aren't tons of good/real headache specialists among neurologists. And the few specialists sometimes work alone on the subject and don't have enough cases and figures to compare with. In comparison to the US which has differences between states, Europe is still a Tower of Babel: lots of different languages, health systems, government structures,... That's all not in favor of data and knowledge exchange. In terms of out-of-the-box thinking I think a lot of Belgians perform well too. But I can't speak for all of them, let alone for all "Europeans" But I do have the impression that the medical world is a little (and maybe very) conservative, and not eager to try out or experiment... (Although my doc was willing to experiment on me with the lithium )
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Hi Anita, just wanted to let you that I am sending you my prayers so that you never experience a headache again in your life. I see that you are improving. Was it the shrooms?
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Thank you, Jimmy! It's actually my husband who's the clusterhead.
He had a ketamine infusion on July 10 and since then, he has been symptom free. (Not pain free, but he hasn't had any attacks since then.) We are crossing our fingers that this particular cycle is broken. We're also looking at starting to grown our own shrooms and get some seeds and be prepared for the next attack, whenever that might be. I hope it's not soon.
Thank you for asking. Are you also a clusterhead?
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Thanks Spiny! I'm going to start a new thread about seeds/shrooms. Hope you can pipe in. Thanks! Jimmy
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KenH It seems you are european too and asking yourselfe why their health system can't deal apropriately with cluster. In my experience there is a huge mental difference between europeans and americans. Where europeans are not much willing thinking and acting out of the main stream which defenately is essential in order to figth the beast. Americans seem to be quite different in mentality by really testing, challeging and questioning facts on the table. So lets say much more independent where the others just follow the herd without questiong much why. Just belifing in godfather in white (an old european, bad, habit...) 4 his type of inovation/behavior you must have an eye towards the states... Urs
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Nope
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I was born on a dam fucking crazy planet!
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Apology accepted. I don't doubt that the gammacore distributor has Serious predatory inclinations. The FDA release must mean something. Short-circuiting three Triple-A batteries to duplicate gammacore's effect sounds untested. Massaging the vagus nerve has had no benefit for me. Thanks again for your interest.
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I'm sorry for my outburst and I did not want to offend anybody padre. I was telling it in a general manner out to the people out there. The whole setup of cammacore is just done to work nicely. Developed for migraine ... Guess what it really is? It can't be sophisticated at all or it would need restricted permission to be sold, bought or used. The gammacore does not have any government based certificate this unit being useful to do whatever it claims to be able to do. The onliest thing one can be sure of is the fact this unit won't harm you when used as described in the manual. ;)
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I appreciate all of the information in response to this post. There is still much to be learned about the gammacore. I don't know that the stimulation to the vagus nerve is electrical or if it's Sonic. I'm not an electrical engineer. Neither am I stupid. I do know how to spell. Keep the discussion going. Thanks, again
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I appreciate the response to this topic. I'm hoping that if $500 a month can be gotten for this vagus nerve stimulator then somebody else may come up with alternative devices to stimulate the same nerve for similar results. I'm still in shock over the $500 a month cost. I've put myself on the list to be notified when it's actually available here in America but I haven't heard from them to that effect, yet. I will post it when I do.
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Well... Short cirquit 3 AAA batteries, hold it a sec to your neck and you are done! Wy the hell nobody realizeses this huge scam, damm... WACKE UP GUYS, DON'T BE SO DAM STUPID!!!
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I was at my neuro's office on Thursday, the gammacore representative was there to demonstrate the device and answer questions for the doc's, I sat in. I'm not sure the positives for the device outweigh the negatives, but the fact that something new can be added to our arsenal of weapons to fight the beast has to be a good thing. I tried it, feels like small electrical pulse on your neck, while that is going on, the corner of your mouth droops a little. Positives: 1. Portable, looks like a 2 headed electric razor, sounds like it also. 2. No evasive surgical implant. 3. No side effects (droopy mouth, stops when turned off) 4. No problem with TSA. 5. Shelf life is 18 months, if not turned on, not sure how long it is if turned on. Negatives: 1. Cost, $575, about 300 "doses" (if it is used up before 30 days, you can a "refill" for free), since this is new to USA, the manufacturer is offering $100 off, and I believe the rep. said the first 2 months are free if you are in the registry. 2. It works only for episodics, and only 47% of the CHer's tested (aborting the CH). There was no data on whether it helped the other 53%, they only measured aborting the CH. The ultimate goal is to expand it to work with migraine patients. They base the usage on a 30 calendar, once you turn it on, they start counting. Their representatives with be in Chicago for our conference in Sept. They are looking for approval for the 2nd generation model, which looks like a cell phone, and has a shelf life of 5 years, The rep. did not know that cost. I hope I remembered this correctly, a lot was going on. I know this does not answer all the questions.
