Leaderboard

Sorry if you've been grilled about this before @trjonas, but has "backwards CH" (as I like to think I've just coined the term) known as "HC" been considered in your diagnosis? Hemicrania Continua (HC) ...."This type of severe headache is constant and every day.".....

......now i got no qualms....you need a new neuro....a headache specialist .....anyone with ANY knowledge of CH knows you don't let a clusterhead just ride these out w/o rescue meds (oxygen, triptans, ergots, ketamine even....)....there's a fricken good reason they are called "suicide headaches"...SHEESH, this pisses me off..... ...in cases where diagnosis is undetermined/questionable it is not at all uncommon for an Indo trial to rule out HC.....when/if it works it's like a miracle....(EDIT to add: and another reason for a specialist is to get the right dosage...too little and you think it doesn't work when it may be "THIS" dosage doesn't work...)

Welcome John! I fixed it for you. Sounds like a rough mess with COVID in the mix! I too wonder how others have fared! Perhaps the move will help with responses.

Bejeeber is correct. A check for HC seems to be in order since you have no pain free time between hits. Indo. can be hard on your stomach, but provides great relief. I would suggest getting in touch with you neuro to do a test run with it to see if it helps! Fingers crossed for you!!!

Taking into consideration your concussion there's also this apparent classification of HC: Posttraumatic hemicrania continua I don't fancy myself a diagnostician though, so I'll try to shut my pie hole now.

I have 15 minutes between hits. So, that gives me a time frame for the O2. I suspect that you get a hit that ramps up and back down again? When it ramps down I suspect that you will a short period that is about as pain free as you get and then it goes up again. I would down the energy drink or caffeine then and hit the O2. I start at onset, you would start at minimum to see if that works. Jon's input is solid, so read and use that info too!!! As you learn to work it, you will learn the methods that work best for you. The objective is to get the CO2 out of your body and pure O2 into it. So, exhale with a crunch at the end when you begin, then inhale your O2. Ditch the CO2 is the objective I suppose you might say. ATB!

Mark, you or your PCP can order the test for D3, calcium, and PTH. You can begin the regimen and get tested in a week or two if that is the way the chips fall. Getting on it quickly is one objective. See the first picture that XXX, batch, put up of six vitamins? Buy those and take as he directs. That is the base of the Regimen. That should simplify it enough to begin by yourself I hope. Those vitamins are available most everywhere. The K2 can be a problem to locate, but is easily ordered from Amazon. If you cannot find the particular D3 Brand that is now recommended, use another brand of the same strength - 50,000 units. If you can only get 5 of the 6 today, get them and take them. The D3 can be found all over, but usually in smaller doses like 5,000 or 2,000. If that is the case for you, then take enough to bring it up to the 50,000 recommended. I take 10k everyday for 3/4 of the year and in winter - like starting this week, I up that to 15,000 per day. I have been on it for years now with great success!!!! Yes, it is pretty stinking amazing that vitamins can do what pharma cannot.

Hey Freester, Did you manage to obtain a lab test of your 25(OH)D3 serum concentration before stopping the anti-inflammatory regimen? After 10 years providing information outreach on the benefits of this 10,000 IU/day vitamin D3 plus cofactors regimen in preventing CH and receiving feed back from most, I've found that among the 18% who didn't respond in the first 30 days and who stopped taking this regimen, nearly all had failed to obtain the 25(OH)D3 lab test. In short, these CHers had no idea if they had elevated their 25(OH)D3 serum concentration into the therapeutic region between 80 ng/mL and 140 ng/mL as illustrated in the following normal distribution curve for reported 25(OH)D3 lab tests among 313 CHers responding to this regimen. Since switching recommendations to the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 in June of 2018 and switching to the Methyl Folate + from the vitamin B 50/100 complex, in January of 2019, the favorable response rate has risen significantly. Survey results for 2019 and 2020 indicate a jump from 83% to 89% of CHers responding within the first 30 days with at least an 80% reduction in the frequency of their CH. What is even more impressive is CHers experiencing a complete and lasting cessation of CH in the first 30 days jumped from 53.6% to 66.7% during 2019 and 2020. I've tracked all the RCTs on CH prophylaxis, none of them have reported 2/3 of CHers participating in these studies achieving a lasting cessation of CH. Take care and please keep us posted. V/R, Batch