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Headache for 7 weeks
kyliesmom posted:
Good afternoon. I have had a consistant severe headache for 7 weeks. I went to the ER a few weeks ago because my left eye blurred and I was dizzy, bumping into things and messing up my words. They ran an MRI and told me that I have white matter changes that are consistat with migraine, MS, menengitis, etc. He referred me to a Neurologist because he wanted to rule out MS before giving me migraine meds. The Neurologist put me on steroids and gabapentin and it did not work. He told me that if that didn't work to get a spinal tap done. My primary care told me to see him first before going through that so the spinal tap could be ordered correctly as the ER would only check for a bleed or menengitis which he did not believe I had as I have no fever and am not presenting flu like symptoms. He has put me on Fioricet which only works with a pain med. On it's own it doesn't releive the headache. He has also tried Imitrex and Zomig and some others that just make me feel drunk and hurt my body physically (I feel like I have been beaten with a baseball bat...hurts to even scratch an itch on my face. Everything is sensitive and hurts.) Yesterday he drew more blood to check for autoammune and pregnancy because I have missed my period which is VERY uncommon for me as I have been on the same birth control since I was 14 and have never missed a pill. My digital pregnancy test was negative. He told me to stop the migraine meds and gave me Baclofen as a muscle relaxer thinking I may have a neck issue and has ordered an X-ray. Here is my question...I have had Burcitis in my left thigh muscle (not the hip joint) for years and have tried everything known to man to get rid of it and the pain with no success. That pain shoots down to my left ankle and I have a hard time walking from time to time. I also have tingling in my left hand and arm that I was told could be carple tunnel. I also very often feel like every part of me (arms, legs, ankles elbows, etc) has to pop. Like stiff and hurt. I wonder if the ER doctor was correct and everything is connected and this may be more then headaches. I have taken the muscle relaxer and it helps way more then anything other then the codine. I am still tingling and hurt like I need to pop my arm and my burcitis is acting up today and the muscle relaxer is not fully helping the pain in my head but it is better today. I have a 2nd opinion Neurology appointment on Thursday and need to know what to ask. I am extremely frustrated and just want an answer instead of a guessing game. Please advise. I appreciate the help and sorry for all the spelling errors...I am bad at spelling. Thanks
itmatsb responded:
You do have bunch of other symptoms as well as the migraine, so I hope that they will keep testing you. But just to have to let you know that Fioricer is a pain pill as well as Zomig and Imitrex I believe. And if you take any pain reliever more than 2 times a week, you risk rebound migraines. But Fioricet has an especailly high risk of rebound migraines. So your constant migraines could be direct result of your ignorant doctor. I fired my first neurologist when I found out that he just put me on 24/7 pain pills without considering anything else. There are daily preventative migraine pills, as well as various injections, etc. to treat your migraines. And BTW I was not helped by steroids at all either, but a lot of other treatments did help me a lot. I would ask the 2nd neurologist for the daily preventative meds as well as testing for all your other symptoms, but I see that you've probably already had that appointment.

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.
mymygraine responded:
If your second neurologist app't is not a neuro with a migraine specialty, cancel the app't, and find a neuro who is a migraine specialist. Regular neuro's just don't have the information required to treat your condition, and often will give you information that is not helpful, or put you through tests they think will be helpful, when there is an easier way.

Go to the site "" and do some reading. They have all the lists of things you should bring with you to your doc's app't. There are many kinds of migraine - one called hemiplegic migraine - is rare but mimics the signs of a stroke, which is the first thing I thought of with your description.

I am not a doc, and cannot make a diagnosis or even really give you any medical advice, but I can point you in the right direction. If you cannot get to a migraine specialist quickly, go through your PCP and see if he/she will help you get an app't. You can try the neuro app't you have, but it may not help. The website I gave you will let you know where in your area there is a migraine specialist, name, phone # etc., and you can go from there.

I hope this helps. I have had migraines for 44 years, and am now unable to work, and have had about every tx available for migraines that are available. But everyone is different. You do have to be careful about rebounds, where the continual use of 1 med will cause the migraine to come back, but a preventative regime is really what you need, and you won't be able to get that until you get a proper diagnosis. A spinal tap is a very extreme method for diagnosis of migraine. So see if you can find the right doc to see, and get yourself in there with all your records even if you have to sit in the waiting room all day every day until they see you.

I feel for your pain, have been experiencing this for a long time, so write back and let us know how things are going.
itmatsb replied to mymygraine's response:
I read about your extensive 44-year history, so I would be interested in any opinions that you may have.

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.
kyliesmom replied to itmatsb's response:
Thanks for all of the advice. I went to the Neurologist and she did a very thorough exam and told me that what I am experiencing is not migraine. She said the nerve at the back of my head behind the left ear is mis-firing and she put me on a new med. I feel better then I did but still have headaches. This is week 8. I asked her about Fibromyalgia and since there is not a test to diagnose that she told me it is a possiblity because of the loss of use of hands and ankles, etc. Just a waiting and watch and see game I guess. Thanks!!
itmatsb replied to kyliesmom's response:
Thanks for the update. Hope that you feel better soon.

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