Hi I have had cluster headaches ever since I was 15. When I was 15 I got them the doctor gave me a high dose of steriods and it broke the cycle for a year. When I was 16 I had gotten them back. I have kept them since then. I deal with cluster headaches every day. I have been put on high doses of steroids many of times. They work all the way until I run out. Then I get them again. I have been on high doses of verapamil. It worked very well but I had gotten drug induced porphyria that put me in the hospital for a week. So I had to stop. I was put on high doses of gabapentin and horizant. I took 1220mg of horizant at bedtime and I took 1200mg of gabapentin 3 times a day. That worked for a few months but I was still getting daily headaches but they were not as bad. So my doctor took me off that since it was not working. I have also been on topamax 100mg at bedtime. that did not work at all. I have also tried amatriptyline 20mg at bedtime. That worked for a week and then it stopped working so I don't use that. I have had the shots in the side of the head and in the back of my head. Those worked for awhile. Last time I got it I got no relief at all. He has tried me on gralise I take 1500mg at bedtime that I am still taking. I am also taking lyrica 100mg 3 times a day and now he just started me on lithium carbonate 150mg at bedtime. I take percocet 5-325mg for abdominal pain but that works for that only. I have been to UVA,VCU, and the Mayo Clinic in Florida. The Mayo Clinic in  Florida could not help me for my headaches. The only thing they found was I have postural orthostatic tachycardia syndrome. Does anyone have any suggestions on what works best for cluster headaches. Or does anyone know of any good cluster headache specialist in Virginia. Thanks.

It is critical that you invest in yourself and read more on this site!

Different things work for different people, and we are all familiar with that trail of medications behind you. Been there and done that...........

There are many of us who have suffered with CH's for decades, but now have our lives back because of this site. 

Read, read some more - then keep reading.

Marc

First off, most of what you list is useless for CHs: gabapentin, horizant, gralise, Percocet...these will do nothing to help. Your doctor is fishing and isn't even using the right poles. Second, if you click on the link at left for Ouch website, follow the links to a list of US doctors, then find VA, and see if any listed there are close to you.

Given how complicated your medical history is, we are not willing to offer you any advice other than what I've said above. We can offer a sympathetic ear however, and a willingness to hang in there with you through this journey. Your first step though is to find a good neuro who actually knows something about CHs. Good luck and God bless. lance

Hey Sean,

Give doctor Neil Pugach a call.  He was a guest speaker at our OUCH Convention in Richmond, VA a few years back.  He treats a lot of CH'ers.


Dr. Neil Pugach MD Neurologist
Contact Information

300 Medical Pkwy
Suite 212
Chesapeake, VA 23320

Phone: (757) 547-0508
Fax: (757) 547-8963

When you see him or your PCP, ask for the lab test for 25(OH)D.  This is the serum level metabolite of vitamin D3... 

Most CH'ers are vitamin D3 deficient and since December of 2010 80% of the CH'ers who have started the anti-inflammatory regimen with 10,000 IU/day vitamin D3 have experienced a significant reduction in the frequency, severity and duration of their CH... Most of them experienced a pain free response.

See the following links for details:

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Take care and please keep us posted.

V/R, Batch

Thanks everyone for the posts. My primary doctor will not run any test for me he tells me it is not his job. Me and him have had many blow outs over it. So all in all I quit going to him. Thanks Batch. I actually looked Dr Neil Pugach last night so I will call him tomorrow and try to get in ASAP and see if he will do that testing for me. I will be happy if he can help me. He is really close to me. I live in Suffolk Virginia and he has a new office in Chesapeake by my other house which is closer. So I will call tomorrow and see if he can help me. I hope he can. It is sad when the Mayo Clinic turns their back to you and wants nothing to do with you.

Hi Wimsey1 I checked that page out that you posted tgAnks for that also. My neuroligist is a fisher you are right on that he has no idea on how to control this because of all my other symptoms. The Percocet was not used to treat the headaches. I take percocet daily for abdominal pain for the last 1 or more. The Mayo clinic actually approved all the drugs he was using. Supposably that is the new thing for cluster headaches. It is either verapamil or gabapentin. I was a Ginny pig for horizant. It was not approved for cluster headaches. But it actually worked for awhile until they pulled it off of the market and he had to switch me over to gralise which was the next closet thing. He actually had to write a letter to my insurance to approve the horizant is only used for restless leg syndrome. But now it is proven to work in clusters. I will be so happy to get a real doctor he nevered even checked my serum level. The Mayo Clinic never mentioned it either so like you said he was fishing for answers but could not control the headaches. He actually wants me to do the gama knife. But he will not suggest anyone to do this.

Hey Sean,

Thanks for the post...  Your PCP should be willing to order the 25(OH)D lab test for you if it takes too long to get to Dr. Neil Pugach.  Failing that, you can always order a home blood spot test for 25(OH)D from ZRT Labs through the folks at the Vitamin D Council for $65... no Rx required.  I keep two of these home test kits for 25(OH)D on hand at all times...  See the following link for details:

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Another excellent site for info on vitamin D3 and lab tests for 25(OH)D is GrassrootsHealth.  See the following link for details:

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You'll find some excellent articles by Dr. Robert Heaney, MD at this site.  Robert is a professor of endocrinology at Creighton University School of Medicine and a Jedi Master of vitamin D3...  He's been mentoring me on the pharmacokinetics of vitamin D3 for the last two years.

Take care and please keep us posted.

V/R, Batch

Sean, are you assuming Horizant is suitable for CHs because your doctor put you on it? Because I could find no literature, the Horizant drug info insert itself included, that indicated it was for anything other than restless leg. I'm not trying to argue, just wondering where that info came from. Gabapentin (Horizant is gabapentin) was used to treat pain but very few found relief using it. Just curious. Blessings. lance