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  • Basilar Type Migraines

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    Old 01-14-2011, 09:32 PM   #1
    bfunshine
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    Basilar Type Migraines

    I've just been diagnosed with basilar migraines. My symptoms include stiff and throbbing neck pain at the base of my brain, visual disturbances which can be seeing spots, blurred and/or double vision, temporary blindness, confusion, dizziness, unsteady gait, clumsiness and sometimes it feels as if my head is going to pop off my shoulders. I have 'attacks' in which I experience nausea, get hot and sweaty and feel like I'm going to lose consiousness. I then 'go to sleep' for an average of 30 minutes and then come to with no recollection of what has happened or how much time has passed. The very first time this happened I was driving on an interstate and thank goodness, pulled off an exit into a nearby hotel parking lot. When I 'came to', I was slumped over in my seat with the car still running. I felt like I was going to vomit and was completely exhausted and was scared, not knowing what happened or what to do. Talk about a bad day! I was dizzy the next day and stayed home from work and slept about 14 hours straight. Sleep is my best friend or I should say the best medicine for me it seems. Alcohol really messes me up and stress is no good time either. I've just been placed on disability and my life has completely changed. I feel as if I've lost my life although I know I have so many things to be thankful for. What is worse is that this is a disease that cannot 'be seen' so I sense that others think this is 'all in my head' (no pun intented!). I'm just looking for some words of support, treatments that have worked for others and any other experiences others have had with BTM's. I hate feeling so alone out here!

     
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    Old 01-23-2011, 10:06 AM   #2
    tingles
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    Re: Basilar Type Migraines

    Hello, welcome to the world of Basilar Migraines. Mine cause blindness, squiggles, ataxia, stuttering and other symptoms. I have been on on disability for three years now.

    I am treated with anti-convulsivents for long term therapy. I do not know what else to say other than there are others out there with the same issues.

    Sometimes I feel locked in without the ability to fully communicate with others. I really do think that people do not understand migraines and then they see someone who acts drunk due to a Basilar Migraine and it is beyond them. Try explaining it and some people do not believe it can be possible.

     
    Old 01-23-2011, 12:40 PM   #3
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    Re: Basilar Type Migraines

    Thank you for your reply and welcome (I think ). I almost feel as if it's what those with autism must feel like. Kind of trapped in your own mind with hypersensitivity to sound, light, touch, temperature but yet numb to what may be going on around you. Are you on disability through work or Social Security? Have you been given any words of hope to return to a normal life or is it more getting treated to try to control the symptoms? Also, do you experience any muscle tremors/jerks? Sorry I'm so full of questions. It's a whole new world for me. I really appreciate your reply. It helps knowing there are others and they completely understand.

     
    Old 01-23-2011, 05:00 PM   #4
    tingles
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    Re: Basilar Type Migraines

    Yes it can be a terrible thing to live with, I have been diagnosed with it for six years. I had migraines in my youth and they stopped but now they are back with a vengeance. I was on disability through my job but I am now on Social Security, it is tough to get but you can get it for migraines. Just document every migraine, severity, and how long and give these to your doctor and keep a copy for yourself so they can be used as evidence. Three years of documentation is hard to sluff off. I say three years because this is how long it took me to get social security.

    I am not looking for a return to normal life. If you are in your twenties they may spontaneously go away but when you are my age and they come back it is not so good. I am mostly about treatment and control with Topamax and a few other medications. I use relpax as an abortive. It is expensive but it is the only one that works for me, correction, phenigrian (sp) also helps. Yes I do experience muscle tremors and jerks. Don't apologize, you have a migraine subset and it can fell like you are losing it.

    Just keep track of your hands and feet, I do not know if my migraines are related but I also have peripheral neuropathy. Remember though I am 50.

     
    Old 01-25-2011, 05:18 AM   #5
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    Re: Basilar Type Migraines

    You are so helpful, thanks! I hadn't thought of the documentation but will start immediately, you are so right. I'm on short term disability through work now but that lasts 6 months. I need to prepare myself for what the future may bring me and be aware of what is ahead of me. I have a feeling it's going to be a long road. I too, had migraines starting in my teens but they've never stopped, only increased in severity and frequency. I'm glad to hear you are able to tolerate Topamax, it is a great medication. Unfortunately, I was tried on it and it didn't go so well. I changed into a completely different person and not a nice one and my hair began falling out. I was so zoned and really couldn't function. One time, I turned the faucet on in the kitchen to rinse a few dishes and left it running...for hours. Another time, I couldn't find my cell phone and then discovered I had put in the refrigerator. I renamed the med, 'Dope-amax'. I was taken off of it after a month and my cognitive function immediately improved. I am 38 and I'm not hopeful for a full recovery but I am hoping to have an improvement in my quality of life. That is my goal. As it is now, I don't leave the house much, planning any type of social outings is questionable because I never know how I'm going to feel. I sleep a good portion of most days. Exercising is questionable because it sometimes exacerbates my symptoms. I was once a vibrant, outgoing, intelligent and successful person and worked as a pharmaceutical sales rep and I'm also a respiratory therapist. All that has changed. Some days I feel my IQ is cut in half by my medical issues. You never know what life will bring you. In the grand sceme of things, it could be so much worse. I remind myself of that everyday.
    I take Imitrex as needed and Klonopin at night to subside the muscle jerking enough so I can sleep. I was on Wellbutrin as a migraine preventative and have also been on Keppra and Prozac. I'm starting on a new medication regime when I see the neuro migraine guru on 2/10.
    Did you hire an attorney to help with the Social Security disability or were you able to get it on your own?
    Thanks for the tip on the neuropathy. I've wondered about long term effects. I'll watch out for that.
    Were you misdiagnosed in the beginning? Are you happy with the doc treating you?
    And again, thanks for your help. It's wonderful knowing I'm not alone.

     
    Old 01-25-2011, 05:13 PM   #6
    tingles
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    Re: Basilar Type Migraines

    Cymbalta and amiptritlyne (sp) are both antidepressents that I am on. They work in combination with my migraine and neuropathy medications.

    At first I was diagnosised as a hypochondriac, gotta love the military and V.A. Ignore all of the hard facts and come up with an excuse. I was diagnosised with basilar migraine after I was at work one day and went blind. I was taken to the emergency room and diagnosised about a week later after a bunch of tests. To make matters worse my neuropathology is sometimes called hysterical neuropathology because it takes so long to show up in tests. Now that it has shown itself in tests it is moving quickly.

    Oh, Social Security. You do not need a lawyer until you are denied the first time, then you need a lawyer. Without one you will not have a chance. If you have long term disability through work they will assist you with that. Otherwise hire one that specializes in disability.

    I am very fortunate with doctors. I have a general practitioner that coordinates my neurologist and psychiatrist, yes I have one and they can be good to have with all of the stuff that comes up. All of my doctors are good to me and recognize the seriousness of my condition.

    Oh about Social Security and lawyers. You do not need one at first but after you have your first denial you need to find one. If you have long term disability they will actually help find one, otherwise look for one that specializes in SSI.

    Last edited by tingles; 01-25-2011 at 05:23 PM. Reason: added more info

     
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    Old 01-26-2011, 09:30 AM   #7
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    Re: Basilar Type Migraines

    Ugh, what a bad migraine day I'm having
    Again, you are a wealth of information and have probably saved me a lot of time, money and frustration with your advice. Thank you.
    Loved how you were first diagnosed as a hypochondriac, jeez. If it's not measurable on a test, then it must not exist! That drives me crazy. When I went through respiratory school, they initially taught us to always LISTEN to the patient first. Nobody knows a person better than him/herself. Then came the reality of working in the field and saw firsthand how much that didn't happen. Sad.
    I've considered seeing a psychiatrist. I know I'm going through depression just in dealing with the life changes I'm experiencing. With what we go through and it not being easily understood by the general public, it can be quite difficult.
    Again, thank you. You've helped me tremendously.

     
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