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You mentioned the spinal tap which I believe is what my neurologist just ordered for me because he wants to get a "lumber puncture" to test for leaks that may be lowering the pressure in my head--I believe. I'm all for it after how disabled and in pain that I've been. I've been suffering from initially 24/7 severe migraines caused by a major stroke over 4 years ago. Now mild to severe depending on treatments. Very difficult to treat and all the doctors say that I may have them for the rest of my life because of the cause.
My main neurologist has been treating me along with another headache specialist, and two other neurologists all at the same university. One of the other neurologists is an neuro-opthamologist who gives me Botox injections which have helped me a lot. The main neurologist also has a Phd at the University's specialty pain clinic. There is no one else in the whole University system that can do all the injections spots with nerve block and trigger points that he knows how to do. Those have also helped me. They have tried to find another doctor to hire, but have difficulty finding anyone with his skills.
I'm wondering if you've tried Botox or the other injections?
So I trust his judgement for me to have the spinal tap. And I've had numerous MRI/MRA and CT scans due to the stroke and a brain aneurysm. I'm a total menagerie of medical problems since my stroke. I've finally come to accept it, although I do experience grief about important things that I cannot do. But I'm no longer going through severe depression about the pain and what I can no longer do. You sound like you have come to grips with your pain as well, but it is hard, no doubt about that.
I would look forward to hearing more from you.View Thread

You sound like a very thoughtful person with a lot of good advice. I am concerned about your long history of migraines. You don't make any mention of Botox, nerve block or trigger point injections. Have you tried them or are you resistant to needles? Also have you tried a Butrans patch? I would be interested. Good luck.View Thread

I would in that case be interested in what the 2nd neurologist had to say. Hope that you'll let me know and certainly wish you the best.
SaraView Thread


If the migraine pills haven't helped you, there are some other things that can help you. I'm assuming that you were taking daily preventative migraine pills. None of the pills worked for me either, untl I took Petadolex which studies showed reduced migraines by 72%.
Also if the daily pills don't work for you, you are eligible for Botox injections which have worked the best for me. You have to get to a high enough dose and may need several tries.
Please let me know if you have tried either of these or whether you think that you will try these.View Thread

I am happy to give you any more details about these treatments. It's probably best if you can give me some details about your current treatment.View Thread

There are many things that can be done to improve your migraines. So take heart and know that you can be better.View Thread

Probably you're not having a stroke, but you need help if you have this much pain--at the hospital.
Also, what medications have you been on to help your migraines? What treatments, such as injections, have you tried? Then I can be of more help to you.
SaraView Thread

When do you have your appointment to find out how many units of Botox you got. OR you could call his/her office and ask a nurse to tell you or ask for a copy of the doctor's report from your visit. My neurologist just raised my dose from 225 to 245 and I have never had such relief from my migraines.
Also ask about the nerve block and trigger point injections. Also ask about the Butrans patch which has kept me out of my frequent ER visits since I raised it to the middle dose. And I only went to the ER when the pain was intolerable and all I could do was vomit. Mine have been very severe. But you should start with the lowest dose of 5 mcg first.
Also, your insurance wouldn't cover it, but Petadolex was the only daily preventative med that helped me. Studies show that it reduces migraines by 72%.
Let me know if any of these remedies might work for you. It could turn your whole life around like it did mine. I've had severe 24/7 migraines caused by a major stroke which makes it extremely difficult to treat and I've been told by 4 different doctors that I may have them for the rest of my life. But now, I have mild migraines most days.
(Except I did get a bad batch of Botox which apparently wasn't kept at the right temp before it reached the medical facility. My doctor said that he has divided a Botox vial amongst 3 people who will all call up and tell him that it didn't work. So don't judge by just one time at a certain dose.)
Migraines are so terrible and impact our lives so greatly. Good luck.View Thread

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