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Successful treatment suggestions?


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Hello all!

I'm 28 a mother of 2 and have been getting CH for 13 years now. I use to be able to have 8 months being pain free. Between cycles now I'm down to 1 maybe 2 months if I'm lucky! I take 240mg a day of verapamil, I use sumatriptan injections if I'm at work when I get a headache but insurance won't cover them anymore so I only use what I have left sparingly (and they make my anxious). All my usually treatments seem to becoming less and less effective and my CH are more and more frequent. I do also use oxygen when I can but the tank they give you isn't portable so it's only an option at home. 

I've been recently researching other treatments that could help and would love everyone input or findings. I'm looking into the vitamin D3 regieme as well as doing a nerve block? Is there anything else I'm missing? Any success stories?

Like many of you know, it's hard to live day to day being in so much pain. I'm worried about how I'm going to be a mom, work 40 hours a week, and maintain relationships. I appreciate any advice you all might have! 

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Regarding your prescribed meds, it is fairly common for people to require as much as 960mg/day of verapamil when they are in cycle (and it is believed that the standard type--not the time-release type -- is more effective).  Your responses to increasing doses should be monitored.  You can split your trex injections, to get two or three injections per syringe. See https://clusterbusters.org/forums/topic/2446-extending-imitrex/.  There are some internet places, goodrx.com being the one I know best, where you can get coupons for lower prices on trex that you can use at any pharmacy.

Have you asked your O2 supplier for a portable tank (an E tank)?  Many people (20% or more, I'd say) use welding O2 for all their O2 needs.  You could get a small tank of welding O2.  The regulator from your large medical tank will fit on that smaller welding tank, but you'd probably want to buy an additional regulator and mask to keep at work. We can tell you more if you're interested.  Have you tried chugging down an energy shot, such as 5-Hour Energy, at the first sign of an attack?  Helps a lot of people.  Melatonin at night, starting at about 9mg and working up can also help (some people get into the high20s before it really works for them).  There's a new, VERY expensive gadget called gammacore that has to be prescribed by a doctor, which aborts attacks and at least for some people also seems like it works as a preventive.  It doesn't seem from what I've seen to abort much better than O2, but it's highly portable.  VERY expensive -- more than $500/month.  But we can figure that will come down over time.

The D3 should help you a lot.  Follow it to the letter (and take the calcium part of the D3 regimen at least 8 hours apart from your verapamil).

Many people here are quite partial to busting, which has given them their lives back, often after they had tried everything else first.  Read about busting in the numbered files in the ClusterBuster Files section, and then ask questions if you're interested.

 

 

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Hello Brandylynn :)
I have had CH for almost 25 years to the day. I too went through single-parenthood with 2 children and a beast in my head, I sympathise with you. I'm glad you found this page, there are a great many resources here for taming the beast here. I am, for the most part, a holistic/naturopathic patiennt when it comes to medications and pharmaceuticals...I prefer nature, diet and personal health practices over allopathic medicine, but that is only me. We are all different and respond to different treatments in different ways. I didn't suffer any significant side-effects from medications, but none of it worked for me and I got tired of being a guinea pig and stopped it all since 2003. 
The first and foremost important treatment is O2, try to get medical grade oxygen if you can, although I've heard some have difficulty with that :( I find the use of welding oxygen questionable at best in my mind, but we gotta do what we gotta do as CH'ers. Highflow non-rebreather works for most people, experimentation and reading on proper O2 usage is essential, there are several links to this topic.
I just started the D3 anti-inflammatory regimen 5 days ago and I am here to post a positive result. I paid the $75 for a 25(OH)D test (and some other serum minerals) to establish a baseline. I will have another done in 3 weeks. Shoutout to Batch for this protocol, you da man!! :D I'm down to a few shadows here and there, day and night, but less and less and less duration. I have an O2 concentrator I use for little ones, while most people report the O2 concentrator ineffective for them, it works for me because I always hit it at onset and use deep breathing techniques that work for me to abort most attacks, I do have an M tank for the bad ones though and an E tank to go with me when I'm away from M. 6LPM is not enough for a Kip5 and up for me. 

Some people(like me) get lasting relief from the use of indol-ring substances, many of which are hallucinogenic. I got 4 years of remission using magic mushrooms to abort cycles before they started. I have resupplied with pscilocybin but haven't dosed because I wish to determine the efficacy of D3 in treating these infernal headaches, it's working. I encoiurage you to look into the D3 regimen ASAP. Batch has laid it out perfectly, please follow those instructions and consult with your doc so they know what's up. My new doc is getting schooled right now...lol It's my duty to educate these people who claim to understand health. VitaminDwiki is an AMAZING resource page...ASTOUNDING even. :) 

I hope you find some relief.
PF wishes from ORK
Nanu nau. 

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Brandy', there's a link to the Vitamin D Wiki in the "D3 Regimen" file in the ClusterBusters File section.  That link is https://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

3 hours ago, Mike from ORK said:

Some people(like me) get lasting relief from the use of indol-ring substances, many of which are hallucinogenic.

You can read about the use of these substances, which is called "busting," in the numbered files in the ClusterBuster Files section.  While all of them can be hallucinogenic, seeds, such as rivea corymbosa seeds, can be taken at non-hallucinogenic levels -- and those seeds are legal to purchase and possess (not legal to turn into the potentially hallucinogenic substance). 

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3 hours ago, Mike from ORK said:

I paid the $75 for a 25(OH)D test (and some other serum minerals) to establish a baseline.

Mike', do you have the results back from this?  I'm curious about what your baseline level is/was, particularly since it seems that the regimen has had some quick results for you. 

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Good morning Clusterheads,

Yes, I HAVE had good results!! :D No HA or shadows last night...at all! YAY!!! Being that I live in Canada and spent most of my summer inside hiding from bright light I'd say below the healthy average. I won't find out until next appt at my PCP, later next week. I waited until I got the 25(OH)D test before starting the regimenn for accurate baseline measurement. ;) I will have another test done a month after starting (first week of Nov will be followup). I have mushies but holding off to test the efficacy of the D3 regimen, I'd rather be doing mushies recreationally than medicinally if ya get my drift...lol 
I WILL update you all when I get the results from the doc. 
Peace, love and unicorns. <3
Nanu nanu. 

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Hey Gail,

Pull down a copy of the anti-inflammatory regimen with 10,000 IU/day vitamin D3 from the following link and read through it.  If it looks to your liking, share a copy with your primary care physician when you ask for the lab test of your serum 25(OH)D.  Please let me know if you have questions.  

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Take care and please keep us posted.

V/R, Batch

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Gail, lots of things will help.  D3, which Batch has helped you with above, is at the top of that list. Oxygen is at the top of the list, too.  Please tell us what you have done and are doing now for your CH.  That will help us narrow the list and give more focused advice.

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