Hello,

My name is Jan, 35 male from from Belgium and a bit of a special case.
Had migraines since I was 17, 2 to 6 attacks a month and always triggered by weather changes (humidity). Headaches are rare but the aura is very strong. But with the magical Zomig melting tablet, no problem.

In january I finally went to see a neurologist. No migraine but cluster (left eye closes, nose gets stuffed, easily irritated) and try the Imitrex injections instead of the Zomig. Result: 24/24 7/7 migraine attacks.

Hospital for 10 days (till I checked myself out) 800mg codeine a day, morphine, sleeping pills, 80mg (now 160) Inderal, the 5 days on Medrol (cortisone) at 1500mg. Scanner, brainwaves,...
Diagnose of Neurologist 2: migraine aura without headache with compleet tilt feeling. Nausea, every stimuli gets trough 10 000 times stronger, any movement or even any movement i see is hell, spots and flashes, equilibrium problems, tingling sensation in face (no hyperventilation, blood gases checked), agitated even on morphine, difficulties swallowing, talking like a drunk but hey almost no headaches.

After 3 weeks the Inderal starts to take the edge of.

Neurologist 3 with the first honest diagnose: no idea.
He thinks a combination of cluster and migraine.
Another Medrol treatment: nothing. But no more painkillers or Triptanen (zomig) for more than a year.  :o
He believes my body reacted to strong to the injection of Imitrex.
But  he sees from the test in the hospital that I do not sleep normally and that I have ADHD (with engineers it's considered normal  :) )

So 160mg Inderal and 30 mg Rillatine. 1.5 hours later pain gone. One happy Pallieter.
2 weeks later back to square one  :'(

In September he would like to go to 60 mg Rillatine and if that doesn't work anti epileptica. Been over 4 months now without painkillers or zomig but with one attack after the other.

So this is my story.

Greetings
Pallieter

Oxygen at 25lpm is the standard.  Give that a whack.

             Potter

Tried the oxygen in the hospital, nothing.
But thanks anyway

WOW! As full a plate as I've seen. At least you are working with a specialist, that's still your best bet to get everything figured out.

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I'd also suggest you read this link on the correct way to use 02. In the hospital, we generally see them using nasal canulas, or low flow rates, both of which guarantee it won't work. Sadly, they still don't understand HOW oxygen works for us. We require 100% oxygen delievered to our lungs at a rate to encourage hyper-ventilation.

Then go to the meds section of this board, and read the topic "123 pain free days and i think I know why"   It's a simple over the counter regimen that's helping CH'ers and migrainers. Worth your time to read it, consider adopting it. Obviously, you'll want to discuss it with your neuro to make sure it works well with his regimen.

Joe

There is almost nothing in your treatment picture which is consistent with what we would expect in the U.S.

I'd suggest that you search for a headache specific clinic/hospital. I assume, perhaps unfairly, that the training of general neurologists in Europe is as bad as is the experience here.

If you can't find information locally, contact the excellent support group in the U.K. and ask for their guidance.

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Quote:

In the hospital, we generally see them using nasal canulas, or low flow rates, both of which guarantee it won't work. Sadly, they still don't understand HOW oxygen works for us. We require 100% oxygen delievered to our lungs at a rate to encourage hyper-ventilation.

I'd just like to ditto what Guiseppi said here.   It could very well be that this is what happened to you in the hospital and of course it did n't work.   25 lpm or higher is what we need, plus a non-rebreather mask.