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      Welcome   01/25/2017

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  1. Today
  2. This was my first attempt at using Verapamil. I was prescribed 240 Mg (80Mg) three times daily. Since I was able to sort of predict when my pattern of attacks was going to occur, my neurologist was willing to prescribe Prednisone if the Verapamil failed. The idea was to find an alternative to Prednisone. I'm 56. I have a 40 day cluster that occurs every two years. I need 60 Mgs of Prednisone to chase the headaches. He prescribes me 5 Mgs to to reduce the dose during the event to find the lowest dose that will work during the cluster period. This years event began with less severity. The headaches were not as fierce at the onset. So much so I wasn't positive the cluster was beginning.When I got a bad one I knew it was time to start the Verapamil. It was supposed to work after three days. For me the Verapamil may have dulled the pain some but on the fifth day of taking it, I got the most severe attack of the cluster. For whatever reason, the Vearpamil caused frequent urination. I discontinued it's use and went for what I know that works. Prednisone. I'm already about 15 days in so I won't need the Pred. for too long. I plan on using it for about 21 more days and my pattern should subside. I just joined this sight and I am interested in the D3 regimine which I will look into. Yes, Prednisone is a heavey side effect drug. I have a demanding job so I can't carry around oxygen. Luckily, I'l be able to retire shortly after my 2019 episode which will likely occur in late February. Yes, I would like to retire the Prednisone, but for me right now it works.
  3. Hi Buckhunter812, x-rays in order to rule out sinuses and others are for sure ok but not for detecting cluster. I was told by a neurologist giving me the diagnosis cluster that I may do an CT-Scan or anything else on my head in order to calm me down but it never would show any signs of alternation pointing to cluster. Also as far as I know the content of this forum&comments it seems to me a hard fact. The reason me responding, along the very god comments you've already in this thread, I would like to point harder to the "D3 Regime" and "Melatonin" as both can be started immediately and both do have proofen benefits. And last put not least, like chfather said OXYGEN is a "must have", so no way around this one! A reason is of my personal interest: Why do you mention you was sick in your stomach and do you connect this pain to cluster?
  4. Yesterday
  5. there is a device available on the market sending out electric pluses to the area one is pointing it (neck or head) in order to stimulate/block certain nerves involved in migraine & ch. German based forums where I've seen people speaking positive about this unit... well, I was not attracted by the device as it claims to help 4 migraine and ch in a extremely unpleasant way. I did not analyze the unit by myself but I'm aware it is a terrible rip-off. The producer makes a funny-ugly statement about what and how the unit works. Most irritating: after just a couple of hundert shoots one has to reload/buy a new one. What is it really? Basically a battery a kind off mini counter, counting the shoots user applies, sending every time upon users click a small amount of electricity to your scalp/neck/head. To me one of the most brutal/cruel ripp off ever seen. Working? Yes and no. I could use it in certain stages during my attacks as my cluster does hit me in 2 phases. Phase 1, pain sneaking slowly but steady from right side of the neck just beside the throat trying to hit the temple at the right side of the head. Phase 2, once pain hit the temple I know I've lost the game and the beast will hit the fan badly starting eating my right eye, feeling the glowing steel from behind... However I can, when in pf phase suddenly receiving an attack (they are normaly far less painful, sometimes even easy to handle) stop them in phase 1 by pressing gently nerves/chanels at the right side of the throat and aprox. 2 cm above. Breathing technic at this moment too can make big difference on top. So yes, I can imagine such technics could help a few. But have a look into the way the beast is kicking me in my ass which may differ from yours... But NO. Being in a real cluster-phase, ch is coming so fast, so fast phase 1 even would be noticeable and fiddling with my finger at my throat will not make any difference. And again I won't support companies ripping off people suffering, even stating they would have some magic in their expensive ¨bullsh.." device. And of course there a tons of Trolls in the german ch forums having seen this unit. They shall go to hell too... my 2 cents on nerve blocking/stimulating DEVICES, *** and finally I may have got it: GammaCore Device just found on this portal in one of chf's thread the name of the device and reporting success as abortive even may work as preventive device. Origin Europe, must be available in USA by now. Yes, this seems becoming quite normal to me in these days: I know I'm right but wrong for sure. In the first approach I always guess I'm right in order to realize thereafter that I'm not right but wrong. So I remember it, correct my head and going on. In this case still being very unsure but understanding I would need to go deeper into the subject (uh, reloading CammaCore Devices) But yes, wondering why this unit/device does not have any space on this portal? Not being available in USA maybe?
  6. I really don't find these reports glowingly positive. They are more like show and tell stories - individual case reports. Even if they work for a headache it is a pretty invasive way that has a limit on how much steroid you want to put in a single area. Our local pain folks are soaking the area with local anesthetics but the cost is so high it becomes impractical with mediocre results. Like you related there can be some irreversible consequences. The implantable nerve simulator also is intriguing but again it is largely aborting attacks but at least it is readily available (being an implant - not treatment option yet) and can be turned on and off repeatedly without causing tissue damage.
  7. hi iv just started using truffles and to help with my CH because i could not get any shrooms as i was too slow to grow for this years episodes and could only find truffles to buy .. the web site i use is good as it grades its truffles to tell you what strenth and what kind of trip to expect but because i dont want to trip and just want the medicinal benifits i take a quarter of what should b taken for a trip and find this helps . i still get a few small episodes for a few days then nothing i thaught that i had been cured by the shrooms and thats why i hadn`t grown any for this year only to be caught out by the devil that is CH
  8. Last week
  9. Anyone out there have any LSD success stories they would like included in a book I'm writing about CH? I personally have found LSD more effective than MM and DALT, but am looking for some outside sources who have had similar success. Thanks in advance! Jtux
  10. Thanks all! L. Rich, please do keep me posted about your son. Pebbles, my theory is that the blocks DO often work, but for the same reasons (and with the same often-very-serious side effects) that steroids do. I have a hunch that there are people out there who've had necrosis and demineralization due to excessive blocks, but I haven't been able to find any examples. But I do agree with you that the publications (which are almost all glowingly positive) are leaving out a very important part of the story. Filacibin, thanks for your reply; best of luck to you. J
  11. I agree with what CHf said, also not everyone has a set pattern to when they get attacks. Mine can change their pattern just by my daily schedule changing. Start logging your attacks, pain level, meds, and possible triggers. If a medicine is not working discuss with doctor and get off it. I spent too much time taking useless meds. Good luck to you.
  12. wish i could help, but just not expert. you could try typing [truffles] into the search bar at the top of the page. i know there's been a lot of discussion here about strains and quantities. wishing you the best -- you're a good one!
  13. If you do have hemicrania continua, there's a good chance the doc won't have a clue about it. I'd urge you to bring something with you about it. The very good news is that if it is HC, indomethacin will treat it; the not-so-good news is that indo is tough on the tummy, and you'll probably need to take another pill, along the lines of nexium, to protect yourself. All the doc needs for the "diagnosis" is to see whether the indo works or not. BTW, back to what filacibin said and your response, it's my understanding that you can still have migraine without the sensitivities you mention. However, it does seem for now at least like HC might be a good hypothesis because of the constant pain you experience. Again, though, if it's migraine, meds will help (verapamil and sumatriptans), and so will busting (see the numbered files in the ClusterBuster Files section).
  14. Sounds enough like CH that you ought to get it treated properly. The BP medicine is probably verapamil. Low dose is kind of required at first, to make sure it doesn't affect you negatively (docs should be following up on that), but a very substantial dose is usually required to have any effect during a cycle. It's not uncommon for people to be put on a course of steroids while waiting for the verapamil to get to high enough doses to help. For many people, steroids stop the pain while they're on them but the pain comes back afterward. You should have OXYGEN -- the #1 abortive!!! And the pill (sumatriptan?) almost certainly won't help. Sumatriptan nasal spray works for a lot of people, and sumatriptan injections work for almost everyone. That's pharma stuff. (There's more, but those are the basics.) The pharmas are not without side effects, except O2. You should read the file in the ClusterBuster Files section about the vitamin D3 regimen. It's helped lots and lots of people. And give some thought at least to busting, which is covered in the numbered files in the ClusterBuster Files section. If you go to the clusterbusters.org home page (https://clusterbusters.org/) and click on the "Cluster Headache" tab at the top of the page, you'll be able to read a file about oxygen, see thorough information about treatment, and maybe locate a knowledgeable doctor. Try quickly drinking a cold energy shot, such as 5-Hour Energy, at the first sign of an attack. Get back to us -- let us know what's happening!
  15. And we all hope you find some definite answers with pain relief.
  16. Just did a search on YouTube for cluster headache attacks and this is definitely not what I have. I'll go talk to the Dr tomorrow. Thanks everyone and I really hope y'all find some relief.
  17. Hey all, I am new to this and really self diagnosed. All answers and feedback appreciated! So all this started 6 years ago I go into "cycle" every year between january and February and it last till June or July with an "attack" every day or every other day. The pain starts behind my right eye and migrates to my right temple and sometimes on bad attacks makes it to my right ear. I've only been sick at my stomach once and that was couple days ago. Does this sound like ch to you all? I've had ct scan done came back normal and also had x-rays done to rule out sinuses, after an attack I'm literally exhausted! Only thing is my "attacks" happen at various times never a set pattern other than once a day or every other day. Dr's have put me on low dose of BP medicine and give me some dissolvable pills to take during attack but that's not touching the pain! I really would appreciate any and all feedback on this. Thank you all for you support and btw I hated reading some of the post on here it's awful what you all are experiencing!
  18. Thanks for the responses guys. I have never been diagnosed with migraines because I've never had the light or sound sensitivity associated with migraines. My headaches have been attributed to a litany of cause to include stress headaches, sleep apnea, nicotine, sinus headaches, and sleep deprivation to name a few. I think it's important to note that I am a victim of Navy medicine, meaning I routinely get new primary care doctors and none are ever the cream of the crop. After reading a bit about HC above, that sounds more like me. My headaches are constant, all day and more moderate in pain than CH appears to be. I'm pushing for a neurology consult tomorrow and will bring up both to see what they think, but now that I know there are actual recognized conditions that meet my symptoms, maybe I can get some movement out of these doctors.
  19. sounds like migraine,the reason i say that is the same as your reason!,this pain is on a scale i can not put into words how strong these things are!have you checked out any youtube vids of the attacks?i cant watch them they are horrid reminders but anyway mate lets just hope you do have bad migraines ,and hope you can find some answers on this site.also try mm treatment see if helps as i know any kind of headache is bad,especially migraine sufferers !.good luck
  20. hello guys,getting off to the dam shorty,as it will be a first with the truffles any advice would be a help, i need 3.5 dried shrooms to have any effect for me,!therefore how would i judge the amount? i am 4 hours in from taking 3.5 of the"terrance makenner strain" as i write this!just have to say that strain has been very kind to me,so would like some input on what strains i should go for.! thanks folks and pain free wishes to you all.
  21. I guess I would suggest that amount of pain is a diagnostic criterion, but that you ought to treat it as CH (or perhaps as hemicrania continua -- see below) and see what happens. You don't describe the nature of your attacks. Do you have head pain all day every day, or do you get some number of attacks each day? If the latter, how long do they typically last? Are you able to sit or lay still during them, or do you need to pace or at least rock back and forth? Do you think the Aleve or iboprofen, or whatever you are taking now, actually helps them? What are you using now? Surely someone must have diagnosed/misdiagnosed them as migraine and given you something, such as Imitrex? If you have distinct attacks that last some number of minutes of hours, can you get oxygen to try? Oxygen is effective for a very large percentage of people with CH, but not effective for most people with most other headache conditions. Have you ever taken indomethacin? That works to treat a CH "lookalike" condition, hemicrania continua (HC), but it doesn't work (hardly ever) for CH. Also, HC pain is generally less severe than CH pain, with occasional episodes where the pain worsens. Sounds like this is a possibility for you, and it is easily diagnosed through your response to indomethacin. Here's a link to some HC information: https://www.migrainetrust.org/about-migraine/types-of-migraine/other-headache-disorders/hemicrania-continua/
  22. Hello everyone, To start, let me explain the title of this post. I received a new primary care manager this week and when describing my headaches was told that it sounds like cluster headaches. No tests have been done to confirm anything yet. This was the first time I had ever heard the term cluster headache. For the last few days I have been researching cluster headaches to see if the diagnosis fits, considering I've had so many other diagnosis over the years that never turn out to be correct. Now that we have that out of the way, my background. I have had headaches since I was a child, as long as I can remember really. I don't know when they started, but I remember being the only 12 year old that planned his days around when he could take the next dose of Aleve vs the next dose of Ibuprofen to try providing relief for a headache. It's hard to remember now whether I would have been described as episodic or chronic at that time, but I can tell you that for the last 13 years, I have had headaches almost daily. I would definitely be chronic at this point in time, having less than 30 days headache free per year, if this diagnosis turns out to be correct. Almost everything I've been reading resonates with me completely and I can relate, the location of the headaches, the sinus involvement, congestion on one side, droopy, red and teary eye. My one concern in all of this, is the amount of pain described. Everything I read says that cluster headaches are the most painful thing imaginable. While I understand that pain is subjective, and I've lived with pain my entire life, I don't know that I can describe my headaches this way. So my concern is that I've been misdiagnosed again and that I will never find relief. Can someone chime in and explain to me, is the amount of pain a diagnostic criteria for this? Or possibly attempt to describe the pain you feel in relation to other pains on a scale of sorts. For example, my headaches are more painful than the pain I felt when I broke my foot, but less painful than the pain I felt when waking up from abdominal surgery.
  23. I'm off to the Mobile World Congress in Barcelona to try to find funding for the app. Problem only is that ticket cost €799,- for the cheapest ones and platinum tickets will cost €5.000,- So no entry for me. But, i've decided to solve this problem in an easy way. I've made myself a sigh I can wear on the frond an on the back of my body and I'm going to try to get attention that way. Big sign saying "Patient-driven eHealth start-up looks for €250.000" with a QR code below it leading the visitor to my pdf presentation that contains a link to a paypal payment service. All my friend think I lost something somewhere on the way but I don't care, A "NO" I have already, lets see if we can get a "YES"
  24. Thanks guys.
  25. Thanx Spiny
  26. Yes, it is petty!!! Glad that you had a PF night though.
  27. Hi Batch! I have been on the regimen for over 4 years now! It has reduced the intensity of my hits and slowed the ramp up time significantly. Thank you! I found that Multi B Complex was an issue for me. B50 might be fine. But B12 made my tongue peel!!! Yuck. So, I chickened out on the B. The coQ10 is new to me and I will add it. K-2 is hard to find in these parts, so I am going to order it now. Walmart pharmacist said they did not carry it and it was by prescription only! Yes, they have carried it. He was just not very bright. My initial D reading was in the 30's after spending the summer gardening. This test was done in August and I averaged over an hour a day in the sun sans sunblock. After three years of testing, I settled on 10,000 D in the winter thru spring, starting in September and ending in July. Then I run with 5,000/day. This keeps my D at 100 to 103. My cycles run from Sept. to April or May. Doctor tried to get me to stop supplementing with D a few years ago. Nope. Not happening. Of course the Gov. is now finding that their 'recommendation' of 400 units of D/day is way off anyway. Rather like the 'low fat' diet for cholesterol, no? I spent 3 years trying to get my neuro to read the protocol. Well, year three, a report had showed up in one of his Neurology magazines regarding D and he asked me to forward it to him. I don't think he ever read it or did anything with it. But, he now has a PA who is very interested in learning about CH. I will take a copy to her my next visit. I have severe allergies and Benadryl (sp) is an old friend. At this point, I definitely need to add it back at night. Most hits are nocturnal. Well, until this time. I am sure that the current problems stem from extreme stress from last February to this January. This winter, it is all being stubborn. And the barometric pressure has been more crazy than normal too. Again, thank you for all your efforts and the wonderful results many of us have gotten.
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