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Hello everyone, let me tell you it is so wonderful to finally be able register to these forums, have been trying for several months now and just now able to get through. I found this group just researching the internet, I'm a 25 year old Male who has been having CH's going on 2 1/2 years now and lately it was breaking me down and becoming unbearable. I'm a Navy husband so I look after my two daughters do I get no breaks (8mo && 5yr old) and I was recently diagnosed with CCH because my longest remission since they've started has been a week. Up until here recently I was trying more types of medicine than I could keep count (all being prescribed by my primary care doctor). None worked and I was having 4 CH a day for about 4 months straight. After 100 imitrex injections in my thighs during that period I quit counting. So after that I told my doctor I can't handle the pain anymore and prescribed me Gabapentin. I'm currently taking 1800mg of Gabapentin a day and it had stopped the CHs from coming 4 times a day to about 4 times a week now, which is still very stressful to me because almost always I feel and dull pain in my head but it beats giving myself shots every day. Just recently started seeing a neurologist and he prescribed me Verapamil. I'm starting on 240mg. Okay okay, long story short is while I've been dealing with this my wife or anyone for that matter really understand what I'm going through and I thought it would help me alot to be a part of a support group with others like me. 

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Hi DE....welcome aboard! You might want to nose around a bit and see what interests you in the threads...and feel free to ask questions or share your comments. We wish you didn't have to be here...but it's a good place to be....and we all do what we can to help each other out. As I'm sure you realize...just knowing there's folks out there that UNDERSTAND....is a BIG deal!

Have heard of Gabapentin before but not a whole lotta success....but that's me. The reduction you're getting is actually pretty good....but I don't know at what cost (side effects that is,  other similar meds can be kinda nasty). Many have found success with a Vitamin D3+ regimen that is cheap and easily obtained in most places....and you REALLY need to explore oxygen therapy as it is an absolute life changer. See this thread in another forum ....no membership required to read:  you might have to type in the address...cut and paste doesn't seem to work for me.

 http://www.clusterheadaches.com/O2/index.html

Re verapamil. Typical sweet spot for clusterheads is around 480 mg/dy....divided doses of normal release (it also comes in extended release...which works for some but doesn't seem to be as many). Some go over 1000 mg/y (myself in HIGH cycle). 240 is a good starting point tho typically there would be a steroid IV and/or taper (1-2 weeks) to break a cycle until the verapamil kicks in. Personally I would not use verap AND Gabby at the same time....due to cost, side effects AND not knowing which one is really working (if they even do).

With oxygen, D3, and perhaps energy drinks (over 100 mg caffeine and > 1000 mg taurine) drunk cold and fast at the first sign of a hit and script meds might not even be necessary.

Others will be along shortly....I always forget something important or my technology IQ fails.....

Best

Jon

 

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++ What Jon' said.  

Gabapentin sometimes helps, but many people find the side effects hard to take (general dullness, lack of coordination, etc.).  I agree with Jon''s hesitancy about verap and gabapentin at the same time.  And I agree with him about browsing around the site -- maybe start with the ClusterBuster Files section.  (If you're going to be using Trex, there's a tip on the second page of those Files about how to get 2 or even 3 injections from one injector.  You can also get trex in vials, with syringes, and measure out your own dosage.  2 mg is enough for most people; 3mg is almost always plenty.)  If you have a question about a specific thing, you can try typing it into the search bar, top right.

Oxygen (which should be prescribed to you, but if you're in the VA system (I don't know how it works for active-duty spouses) might not be because the government doesn't recognize O2 as a CH treatment even though all the medical literature puts it at #1).  There are other ways to get O2, but first ask for a prescription.

Like Jon' says, do the D3 regimen.  http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708   (It was invented by an ex-Navy guy.) Drink down a cold energy shot as soon as you feel an attack coming on. Many other things to consider, but those are all good places to start.

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YES, I seem like half the battle is having people who UNDERSTAND what we're going through, and thank you guys very much for the quick responses means alot. I'm going to be stop the Gabapentin today and only continue to take the Verapamil. OH, I also did a little exploring last night in the forums and was reading up on the D3 Regimen and 10,000 ui D3 daily but I'm going to also check out the threads you linked here, sounds like a really good idea so it can't hurt to try. Was also seeing that someone believed CH were caused by a lack of Vitamin D in our body so I going to go buy the D3 supplements today. Well I'm off to explore the rest of the forum while I still can thanks again guys & glad to be a part of your guys community !

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I can also vouch for the D3 and O2 i found about from this site. I have not gotten total relief from one or the other but I did cut pain and length of my headaches down and the best part is I no longer use triptans  for aborting my pain. I should not say never, I will take it but maybe once a month just for a real head banger.

I feel your pain and also get 4 to 6 a day but they are now manageable, I too get very frustrated at times and think nothing is going to help me but then think back to before I had this site to read other stories. You are not the only one and somebody always has it worse off then you do. With time and trial and error you too will find something that will help ease your pains and you will be giving advice to others. 

I wish you the best of luck and ask a tun of questions and you will get true answers from others who have already tried it, not like a doctor who may have read about something one time and it sounds like it should work.

 

Oxygen will become your best friend..

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