The very best of luck with your infusion treatment. I had a DHE infusion myself, but it did not help. However, strong vasoconstrictors have proved hugely beneficial to many people with headaches, so you have a good chance of success. I am soon to take topamax at a small dose. I am rather worried about the side-effects. How did you get on with it? It is also good that you are seeing Todd Rozen. By all (internet-based) accounts, he is the man to see for this cursed thing.

If you do bite the bullet and go to South Africa, it would be great if you could report back on your experience. Dr Shevel sounds so definite in his views, a feature which is attractive when neurologists are, understandably, so vague when discussing the cause of headache. Like you, part of me wants to believe that a simple arterial surgery could stop the pain. It does seem unlikely though; the very experience of head pain suggests complexity to me rather than simplicty.

Anyways, stay strong. You will get better.

Yes, I agree that it is strange that no one is commenting on Dr Shevel’s theories. His work is published in respected journals and he himself very kindly fields questions from people such as ourselves, but there is simply nothing else in the literature about his surgery. As all headache sufferers know, there are innumerable medics and others on the Internet claiming to have a cure of some sort for headache; it puzzles me that no other doctor in the world would offer this straightforward surgery if it has such great .success.

My own headache is largely located in the occipital region and has no migranous features. I have had no luck with elavil (other than bad luck, the elavil/amitriptaline gave me unilateral tinnitus, which is hellish) or depokate as preventers but am soon to try botox. My neurologist also wants me to take topamax. I am weary of these strong drugs and am resistant to starting another one.

I too have thought of just flying to South Africa but, in the absence of any commentary, it would be hard to justify. Other solutions that Dr Shevel suggests, including the use of a mouth guard/dental device, do not sound promising.

I hope you woke up today and your headache was gone!!

Cal

As you know his views are controversial. Further (as in my case), lack of any positive response to triptans or to IV DHE treatment (which I have had) makes it more difficult for him to determine that one’s headache is primarily vascular. In correspondence with me, he expressed surpirse that I had no relief from DHE and stated that this result made it more difficult to say that his surgery would be effective. A further point worth making is that he is really concerned with classic migraine; he does not seem to have published or commented on NPDH, which, as you know all too well is distingushed by the fact that it does not respond to treatment.

As I mentioned in my original post, my neurologist is very skeptical that some arterial ligation could cure something as seemingly complicated as migraine. It would be great if another doctor or neurologist could comment on Shevel’s theories and surgery. I do not find the testimonials on Dr Shevel’s website especially convincing.

I live in Europe and the cost of travel to South Africa and subsequent treatment is prohibitive. For such minor surgery, the fee is very high. Nonethless, Dr Shevel is generous in replying to patients that is not treating, something that is very commendable. I wonder also what he makes of botox and nerve decompression.

In any case, I will post again soon if I discover any more about the extracranial theory re headaches. I hope you are doing well.

Cal

I did have the OND surgery 1.5 years ago. It gave me some relief…about 30-40% reduction in the intensity of my headache. Nothing has every touched the frequency. It is with me ALL the time.
I am now wondering if the OND surgery was moderately successful because the procedure disturbed the landscape of my extracranial arteries.
THe worsening of my headaches is always preceded by a powerful throbbing in my carotid artery on my left. I have always suspected some vasculature component to these headaches. They started almost 4 years ago.
amy g

Well done on keeping such an interesting and compassionate site.

As someone recently diagnosed with NPDH, I thought I would make two comments.

1. Has anyone any views on the theories about headache advanced by Dr Eliot Shevel of South Africa. Dr Shevel concentrates on migraine but contends that headache pain in general is very often a result of problems with the extracranial arteries of the head and not the intracranial arteries or brain (as most neurologists believe). He argues that this fact has been ignored by neurologists, who have focused on preventive medication that is often of limited efficacy. He has pioneered a form of arterial surgery for headache sufferers at his clinics that is minimally invasive. His theories are controversial (and my own neurologist dismissed them). Nonetheless, he has been published in a number of eminent academic journals, including Brain, and has been the subject of considerable press interest recently following collaboration with Italian and American neurologists. A quick google search on his name will furnish all the necessary details.

2. Nerve decompression surgery, which is also somewhat controversial, does appear to have some positive results. Do any NPDH sufferers have comments on its value for people with our rather unusual headache disorder?

Thanks again for this site.

I hope all reading are having a good day.

Cal