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ClusterBusters
Zookah

Becoming unmanagable

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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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Welcome and sorry you have to be here. Hopefully we can help you out. Do you have Oxygen to abort attacks?

The next thing I'd suggest is looking up Batch's Vitamin D3 regimen and start that asap. It's most helpful if you follow all of it, not just the Vitamin D. This helps a lot of us as a preventative. 

And finally, are you familiar with busting (if in cycle) or dosing with magic mushrooms as a preventative?

I find there isn't one specific thing that reigns in the beast, but when using especially the Vit D and MM in combination, I can usually keep them under control and completely manageable. Hope this helps

C17

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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.

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The oxygen we use it in tank form. You can get a script from a doctor or set it up like a welding system. You can get different size tanks so you can keep one at home and another in your car so you can hopefully get to it when you are at work. Batches D3 can help knock the amount of hits you get and the pain level down so it will make it a little more manageable. You can use energy drinks or strong coffee to slow a hit down as you make your way to the oxygen tank. You will need a high flow regulator and a cluster mask to optimize your setup but that would be top on my list of things to get. It can change your life.  

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On 4/10/2019 at 3:14 AM, Zookah said:

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.

Hey man, Im just now coming back into the fold. Your gonna be ok. Get that 02 asap. Its key. The busting works. 

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Zookah,

Welcome to the site and sorry you have to be here. You are at the right place, there are some great people on this site that will help you in your journey. Busting, vitamin D3 program and O2 will make a huge difference in your life. Hang in there and good luck. 

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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. 

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On 4/30/2019 at 2:21 PM, Zookah said:

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. 

Get off the sumatriptan ASAP. Most believe, as do I, that while providing short term relief, it makes things much worse. The O2 is a godsend. There are other things out there that many have found help, at least according to my research. If you can't try MMs or the seeds you may want to go that route. Good luck. 

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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! 

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5 hours ago, Zookah said:

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! 

That’s great news mate

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