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.

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

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.