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Hello, I'm Ivo 40 years from The Netherlands and CH-er. Had Chronic (6-8 attacks a day) CH from my 18th till approx. 30th. After that it went away for about 10 years but long story short, I'm here for a reason. Started the D3 regime last saturday and initially responded verry good from day 1. CH went away (even could consume alcohol) unitll I saw my neurologist. He told me he had heared about the vit. D3 but didn't believe it could actually work. Also he told me that it is a fact that the placebo effect among headache patients (migraine and CH a like) is much higher than in other groups (like 40%). But he also told me I probably could do no harm so if it helped I should keep taking it. Unfortunately the CH came back, still taking the loading dose 50.000 IE a day. (day 7 now) Not all the extra supplements are available in The Netherlands over the counter so my question is which of the other supplements are mandatory? Are there numbers available on how many people that have CH returning after starting the vit. D3 regime? Thanks
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Not that long ago Forbes posted an article about cannabis for migraine prevention. It got ignored by all the headache advocacy groups (for SOME reason that I will let you all figure out on your own) but I am posting it here because it did include some cluster sufferers. It was a small study but it found that half of the cluster sufferers had better luck using a THC/CBD combo than using verapamil. It was a whopper dose, from what I can tell it looks like 100 mg THC and 100 mg CBD combined. One interesting thing that was noted was that the cluster sufferers who got relief were the ones who had migraine as a child. The study was done by Dr. Maria Nicolodi, an Italian researcher that I have been following for a while. I have a lot of respect for her and have seen a number of valuable studies done by her. Here's the link- https://www.forbes.com/sites/daviddisalvo/2017/06/29/marijuana-treats-migraine-pain-better-than-prescription-medication-study-finds/#73190af53700 And here is some more info on the study- https://www.ean.org/amsterdam2017/fileadmin/user_upload/E-EAN_2017_-_Cannabinoids_in_migraine_-_FINAL.pdf In regards to anecdotal experiences, I know one person that has had multiple brain surgeries that were not very successful but he has now gotten relief by vaping CBD as a preventative. On the other side of the fence is me, if I take CBD it is one of the worst cluster triggers I have. High dose THC works pretty well for me at times but I stay the hell away from CBD at this point. I am pretty sure that in this regard I am just (once again) the oddball. I have not met anyone else that has ever said that CBD triggers their clusters. Hope this helps. -Ricardo
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Interesting sleep/CH research
Brain on fire replied to CHfather's topic in Research & Scientific News
Do try to find a headache specialist! No point in wasting time. -
Interesting sleep/CH research
Brain on fire replied to CHfather's topic in Research & Scientific News
Sleep specialists don't treat cluster headaches. -
Interesting sleep/CH research
Brain on fire replied to CHfather's topic in Research & Scientific News
Polysomnography studies catch far more than just sleep apnea. How low did your o2 saturation get? When you read the study you have it will be there. It will also show how often your sleep was interupted and most importantly the quality of sleep you get. It will also how much slow wave sleep (SWS) & REM you get. MSLT (daytime study done right after the study you had done) includes measurements on how long it took you to get to sleep & how long after sleep you go into REM sleep. It is used to measure excessive daytime sleepiness (EDS). About 4-5 times during the day staff comes in, hooks you up & tells you to go to take a nap. Each 'nap on demand' lasts 20 minutes, they wake you. Is this neuro a sleep specialist? Is it a stand-alone office or connected to a hospital for the studies? Any sleep specialist who lacks their own sleep study facilities & staff operating them isn't worth seeing. If it were me, I'd fire that neuro and move along. - Last week
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Ketogenic Diet Clinical Trial Results On Chronic Cluster Headache Patients
Dandownunder posted a topic in Research & Scientific News
My apologies if this study has already been posted. I didn't find much on the forum about this via the search bar. I know that Batch has brought up this kind of diet in conjunction with the D3 particually if the D3 isnt getting desired results. Seems according to the study there is something in this diet. Here is the link to study its easy to read and understand. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5816269/ Dan -
Anything to tame the beast!
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I'm not sure what the test was called. I went in in the evening and they hooked me up and wanted to monitor at least 6 hours of sleep. I believe this was the standard test for sleep apnea, but I figured they would catch my CH attack and progress would be made from there. Well, they caught my attacks but failed to focus in on that particular aspect. The summary did not even include the attacks. It basically just said I had a sleep disorder and I needed a CPAP. I find it very difficult to get medical personnel to cross that line into Cluster Headache. It's amazing how many so called Neurologists can't zero in on this condition. That was just one of about 6 Neurogists I've been to see and none of them can think outside the box. Grrrrrr..
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10 LPM max... and I think they rate that at only 85% oxygen. I got that for overnight stays in hotels until I get to where I'm going. It really is a pain to travel like this, but it is manageable.
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What’s the flow rate on the concentrator?
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Interesting sleep/CH research
Brain on fire replied to CHfather's topic in Research & Scientific News
You had polysomnography studies. Did you have the multiple sleep latency tests? They are the all day tests done the morning/day after nighttime (polysomnography) studies. -
I went to my O2 supply office just the other day to get a concentrator. I had an attack start just as I got there. I asked the office lady to fire it up and I would try it right now. She only had a crummy little non-rebreather on it and it didn't do jack shit. Boy did they get an eyeful of a full blown KP-10 for 40 minutes. It was a bad one. She felt so bad for me, she gave me a M-3455 liter tank free just to have in the car. They all developed a new understanding of what CH is. Anyway, I've used it at home with my O2ptimask and it will abort an attack if I get to it quick enough. It takes longer.. 15-20 mins. sometimes... compared to my tanks at 15 LPM 5-10 mins. to abort.
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I did the prednisone burst at the start of a bad cycle and it killed it within 24 hours. It was a miracle. BUT... It returned 3 weeks later with a vengeance. Stay on it.
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.... good reminder ff....I used Lincare for multiple CA and OK trips..took a major worry off the table...same prices as home...no hassles....nifty travel service form on their website. I'd specify no concentrator tho... doesn't work for most clusterheads... Best Jon
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For those of you that are anxious or even cancel vacations because of CH.. as I was for years... Here is some reassuring info that I've found out. If you have an O2 prescription.. an oxygen supply company in the area you'll be in will deliver a tank right to your resort. I've done it several times in several states and it is really hassle free. Cost has been very reasonable, also. One supply company didn't have big M or H tanks so they sent out an O2 concentrator that put out 10 LPM. Take your O2ptimask. I can get by with 10 LPM. I'm headed out tomorow for a months vacation and have tanks lined up at all the different resorts. Hope this helps someone.
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I went in for a sleep study twice during a cluster cycle. I was so excited they had me hooked up to all these wires and twice a cluster triggered within the first hour of sleep.. which is common for me.. I saw on the raw data where as soon as I transitioned from stage 1 to stage 2 sleep the CH triggered. The Neurologist didn't even look at the raw data. The only thing she said was I had disrupted sleep and I needed a CPAP. I was so pissed. I was in the middle of one of my worst CH cycles and no shit I had disrupted sleep. Another disappointing dead end in figuring out a possible cause or treatment.
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Moxie Girls first rule of Cluster Headaches: No two people's clusters are the same, and just as soon as you figure yours out, it changes. MG
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Hello everyone, Just wanted to give everyone an update-- Had the beast pretty consistent for 4 weeks (through the holidays unfortunately), prednisone helped with severity and I also tried a testosterone shot about a week ago. For four days I was pretty much headache free except for occasional shadow pain.....then it just returned a couple days ago. Not terrible pain, but I've had to hop back on my oxygen therapy int he morning. The last two bouts I had years ago in college and then before that in HS, I don't remember getting a break and having them return. Is it normal for this to happen?
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Hi Juan Pablo Prieto is this the study you are referring to? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5816269/
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MG's first rule of clusters: No two cluster sufferers are the same, and just as soon as you figure yours out, it changes. Really glad you found a system that works for you. A lot of people report that physical exercise helps with clusters, and a good diet low in processed foods and sugars is always a good idea. I'm sure you'll find people who find this method works, and just as many that don't. As an example, for most cluster headaches, alcohol is a massive trigger. But not for me. In fact, I can use it to abort a migraine if I have to. We are all different. MG
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Hope it helps, It worked for me!
Brain on fire replied to Juan Pablo Prieto's topic in General Board
Thank you Juan Pablo. Happy it works for you. Please keep us posted. -
Hope it helps, It worked for me!
Juan Pablo Prieto replied to Juan Pablo Prieto's topic in General Board
Hi Brain on fire, yes I will share the information and continue the post as soon as I have a chance. Best wishes. J. Pablo -
Have you tried busting with seeds?
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From what I gather both from reading and my experience as a chronic. CCH is a bit more stubborn/ persistent than ECH. Just the luck of the draw I guess.
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Hmmm... I have to wonder why it is said to help episodic and not chronic. ???
