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Cluster Headache Help and Support >> Getting to Know Ya >> Hello folks - New member from Germany http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1488910570 Message started by Multivitamin on Mar 7th, 2017 at 1:16pm |
Title: Hello folks - New member from Germany Post by Multivitamin on Mar 7th, 2017 at 1:16pm
Hi all,
first off thanks for this amazing community, I did some binge reading the past couple of days and already feel a lot smarter :) I am from Germany, first (noticeable?) attack in 2009. Got diagnosed pretty much straight away as I googled the symptoms and was lucky that one of the countries "highest appraised" doc for CH is actually in my hometown. MRI scan and else got done, o2 is working in nearly any case so keep assuming the diagnose stands correct. I am 35, M, and usually have an episode each year or each 2nd year. 2 years PF now, starting again since last week. I am hit 3 times at night / early morning, sleep deprivation is one of the hardest things at the moment. Day time naps & bright light a big no go. Based on past years experience, I am on verapamil 240 now, have Zomig nasal as emergency (works fine as well w/i around 5 minutes aborting) and two tanks of o2, max flow 15. (I read here higher is recommended but it does it for me for now as is and I also started to use the breathing technique from Batch where I am still evaluating if it aborts quicker. Probably some more experience needed) I will immediately start the D3 regimen asap, just found out about it but it makes perfect sense - interesting enough I "accidentally" got diagnosed a very severe low level October 2016 (didnt ask for the test, it was done during a standard blood sampling. Never got D3 values before) I scored at a stunning 9,0 Vitamin D (25-OH) (!!) (reference level in test 40-60 considered as "good") The doc told me to load a week with 20.000, then once a week 20.000 till June. I didn't question that, (and also forgot taking it to be fair some weeks) until my episode started I read that taking D3 only is just a small part of the equation. So lets see. As I am on Verapamil currently I will get a new test first and then start right away. Will report on the general D3 thread later. I dont want to start on my own as I need to know my current base level and am also not sure whether the calcium could cause issues with the verapamil if I dont now my lab scores on that one. Not easy to find a doctor willing to frequent D3 tests :(. I found an online kit for blood testing, but it does not cover calcium only d3. I also suffer from thyroid hypofunction / Hashimoto and take according meds, very bad back pain year round especially my neck and have a very low metabolism. Maybe this all tracks back to the low Vit D3 levels I am really curious what the loading will do. Any questions, let me know thanks again all for keeping this forum up |
Title: Re: Hello folks - New member from Germany Post by Multivitamin on Mar 11th, 2017 at 1:27pm
Hi Batch,
thanks for the welcoming message - your German is great couldnt have said it better :) You travelled to Europe or learned at school ? Can't wait to start testing the D3 treatment, did a blood test on Friday and looking forward to the results of my current base level. I know I could theoretically start right away, my Neurologist is fully supportive and actually knew about this option as well (and agrees with the current evidence around D3, not just for CH treatments ) - which was good to hear. The doc subscribing me the 20k without co-supplements was a different doc, should have asked the neuro earlier. Problem is getting all of the supplements it looks at least at the pharmacies I checked. (They have everything except vitamin B50 and Boron only at 3mg - 1mg doses aren't even available to order) Will check out UK stores, ordering from there works also. I will report back and do the survey as well. Sorry for what you must go through as well, sending you ongoing strenght and best wishes over the big pond. Servus, Multi |
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