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Zookah

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  1. Hi jules sorry to hear your attacks are getting worse i highly recommend trying "Batchs" vitamin d3 regimen as a preventative. Id start by going to a doctor and getting your magnesium and D levels checked to see if you are low. The basic idea is to get your d levels up to 80 ng/ml and keeping it there. Also are you using sumatriptan shots, and what mg? I know there is also lidocain through the nose and some other preventable methods such as botox injections in the forehead. Im just curious as to why the oxygen isn't working. I remember someone saying their is a nerve disorder that can cause symptoms similar to CH. Since you responded so well to chiro it could be that. Preventables only help so much and the oxygen at 12lpm -25 should be able to abort an attack. Hopefully you were diagnosed properly wish you the best sir good luck!
  2. Zookah

    Just diagnosed with clusters

    Hi mrskgood im sorry you have to be here and i felt the same way you did a few weeks ago i highly suggest trying Batchs vitamin d3 regimen as a preventative. I know they say every cluster head is different but its worth a shot before busting as you take vitamins as a preventative. Since loading the d3 and other vitamins the pain of the attack has been reduced for me and i use the oxygen to abort them. You're in the right place and hopefully you find something soon that works for you!
  3. Zookah

    Warning about vaping

    I vape also i was reading it can cause something called "popcorn lung" which makes it harder to absorb oxygen into the bloodstream through the lungs. But i also notice it doesnt trigger an attack i think the way it dehydrates you can trigger one if you get too much nicotine. Just my opinion hope this helps
  4. Zookah

    D3 clarification help

    I'd reach out to Batch if you have any questions that vitamin wiki works also. Just keep your d3 levels at 80ng/ml. I started this week and it worked for me i hope it does for you as well best of luck!
  5. Zookah

    Becoming unmanagable

    I did i have my o2 at 7 liters a minute for 10-15 works perfectly and i started batchs d3 regimen and i have only had one attack but thats due to missing a dose while i waited for the d3 from amazon so now attack free for 4 days and i cant thank everyone enough for the support ! But on his regimen im positive that if i keep my ng at 80 i will not get them everyday and that is a godsend!
  6. Zookah

    Becoming unmanagable

    Thank you all for your help im getting the o2 today and i got my vitamin d tested my doctor is advising against starting this d3 regimen but im going to go ahead and start it anyway because it isnt defecient but its not in the high end of the spectrum either. Thank you all so much for the help and advice, ive gone through 10 shots of my sumatriptan in the last 10 days and have been very depressed. If i werent for you guys and a glimmer of hope you gave me i probably wouldn't be here. Just wanted to thank you and also thank Batch for reaching out to me when nobody else would.
  7. Zookah

    Becoming unmanagable

    Thank you C17 and thank you for a quick response i will get the supplments asap!! I havent tried oxygen yet i work 50+ hours a week and am scared to carry around a portable machine i live in socal. I have sumatriptan 6mg injections i use atm to stop the attacks since they mainly happen when im not at home. As to the MM ive given it some thought but i am in recovery at 3 1/2 years clean off everything, and im also diagnosed with schizophrenia so im kind of trying to avoid taking those.
  8. Zookah

    Becoming unmanagable

    I feel like im at my wits end with these CH.. I've been diagnosed for about 2 years now. Ive gone to see every neurologist and pain doctors. I was told about this forum by a doctor a usc neuro, so i finnalty deceided to give you guys a try. It just seems that after each remission they come back with a vengeance. I usually start to counter them with high doses of magnesuim and a nsaid and save my 6mg sumatriptan viles for when i really need them. The nsaid ive been using is meloxicam. So far this has been working but if i have a 6-8 month attack. i cant afford the sumatriptan and im honestly scared of how im going to manage this. Ive been reading into the hypothalamus gland and how it controls basically everything and wondering if its a lack of hormone distrubtion and a change in sleep cycle that will start a cycle. They tend to come back around daylight savings so im trying to see if keeping a consistant sleep schedule will help. But it just feels that as soon as something works and helps the attacks come back and change. Any opinions or ideas on how to help cope would be very much appreciated! Ty for taking the time to read this if you did and i hope someday we can find a solution to our problem!
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