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7 Years to determine I have CH and not TMJ, Migraines, Sinus related + RedBull Relief


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Hello All, I want to thank you for putting this site together.  The information I discovered on here has helped me so much!

I found this site about 4 months ago while google searching around for better vitamins to take for "migraines".  Now I feel obligated to share my thanks to the information I found on this forum that I / anyone cannot find elsewhere.  Forgive me if I'm positing information that was previously posted.  Before I found this site, my Neurologist had never mentioned anything about a "cluster headache" to me, ever. 

Background on me:  I'm 38, male, know nothing about the medical field (mechanical engineer).  I have traveled domestically and internationally for the last 18 years, a lot.  7 years ago, my headache started.  I went to the dentist first because I thought it was my back molars where I had a filling.  They replaced the filling, nothing changed, then forwarded me to a "sleep and TMJ specialist".  They scanned me, gave me a mouth guard.  I do grind my teeth, so needed this.  Dealt with severe headaches still.  Always the left of my face/eye/jaw.  I didn't know it was something not related to my jaw.  I lived the next 6 years on OTC meds, which do nothing, except maybe goodys powder or excederin tension.  

I got pissed off about the headaches that I would get every night.  This has been going on for years.  Yes, they hurt like hell, I just dealt with them.  I went to the family Dr., who forwarded me to Nurologist in Pittsburgh.  Scanned me, cost me a lot of money, I have chronic migraines.  This was in October of 2020.  They put me on Topamax, which helps.  I have no side effects and only take 50mg/day. I really don’t want to go to a higher doseage after readying some horrible reviews.  It reduced the headache frequency.  At the same time that I started on the Topamax, I also started on a bunch of vitamins.  I also started on Chantix and stopped smoking.  I think I found this forum a few weeks after starting on my new regimen. 

I have a few notes and questions:

1)     Do I have “CH”?  My symptoms are 100% identical to the symptoms of CH.  Without a doubt.  As soon as I found articles on CH, I thought to myself, holy shit, this is exactly what I have. What causes the CH to begin with??

2)     I am on all of the “Vitamin D” supplements now, except the Vitamin D.  I need to go get my bloodwork done so I can get my baseline levels.  To date, I only took 3 of the 50k i/u (once a week) to be safe.  Why does the Vitamin D approach work??

3)     If I would have known about the redbull / energy drink relief a long time ago, that would have prevented a thousand headaches!  What ingredient in the redbull does the magic?  If I feel a headache coming on, all I need is about 8 ounces of redbull and it fades away.  Is it possible to just take a daily Taurine supplement as pain prevention?? The Dr. gave me rizatriptan, but that stuff makes me feel funky after, I hate taking it.  Redbull is more effective.  Also, when I drink redbull to calm down a headache, I do not get all jittery.  I drank it in the middle of the night before.  5 mins to calm a headache.  I would have never figured that out without finding this website!  

4)     How do you make the headaches go away forever? 

Lastly, I am really glad the list of recommended Dr’s is pinned on this forum. I will be setting up an appointment with one of them.  Thanks, Dave

 

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Welcome Dave, This site is full of info that may help you out with figuring this out. A little more info on your headaches, Are they the same time of day every day? Do they run in a cycle, Spring, Fall, of only on a certain month and only x number of weeks? Does alcohol bring them on? things like that will help figure out if they are for sure clusters or not. Like Jon said above Oxygen is something you will want to get as soon as you can if you do have clusters. You will want it in a tank not a concentrator machine  and you will want a high flow regulator and a cluster mask to get the full benefits from it. You get the tanks and take whatever regulators and masks the company gives you and toss them in the closet, we will help you get the correct things for your setup after that. The redbull and 5hr drinks are great for me as well. I like the 5hr drinks because of the size, I can also drink them any time of day with not effect on my sleeping. I think the magic in them is the Taurine/Caffeine combo. The vitamin D3 your taking could also make a world of difference for you and the member XXX is sure to be able to answer any questions you may have on that. 

How do you make the headaches go away forever? Well if you can answer that I don't think you would ever buy another drink or dinner again.

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My only comments on the great advice above are (1) I'm not sure there's great evidence that taurine is a significant factor in the effectiveness of energy drinks/energy shots. There might be such evidence, and I might have missed it.  For some people at least, plain strong coffee or energy drinks without taurine seem to work fine. I mention this because there can come a point when you get really sick of the energy beverages. (2) Triptans are very effective against CH, but not in pill form (takes too long to get into your system). The nasal spray works for many, and injectable forms work for virtually everyone. You might want this in your arsenal in case of breakthrough attacks.  (3) Busting has been an excellent preventive for many who figure out an effective dosing schedule between cycles, and the overall D3 regimen can also result in extended painfree periods. You can read about busting basics by clicking on the blue "New Users" banner at the top of every page, or at the very end of the post I'm going to link you to below. (4) Don't dawdle -- get oxygen!!!!

This post has a bunch of info that might be helpful (busting info at the end): https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

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