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Severe Basilar Migraines, Severe Interstitial Cystitis, chronic fatigue, etc.

I have had them for 25 years. I have not found anything that works. I would like to have others respond that have this kind of headache . What have you tried? Does anything work for you? Does anyone know of support groups or good books for people like me that have multiple serious and disabling conditions that are rare and continue to worsen with no successful treatment. My health is really declining and at this point the doctors do not expect a long life expectancy for me. I accept that but feel alone. I’m sure there must be a support group for people with unusual conditions that can laugh, cry, and share common feelings such as grieving for the shortened life expectancy and typical phases people go through. I am home bound a lot but even a book or online group would be nice. I know many people are in the same situation but I personally don’t know them. I am 55 years old. Thank You for taking time to read this and I hope and pray I will get some great and helpful responses. Blessings! Tamara

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  • Tamara author
    4 years ago

    Thank you so much for the info. I will look into it! Bless you ! Tamara

  • docd
    4 years ago

    Hi Tamara, I suffer from Basilar Migraines at times. Worst was a 6 month basilar status migrainosus. Posted about it earlier this month. I got that to resolve with Topiramate 75mg twice daily, and Vortioxetine (brintelix) 10mg once daily. That is apart from the Botox, massage therapy for neck and shoulders, yoga & meditation and stimuli avoidance. The medication made a huge difference in the severity and frequency of my symptoms. Now, as long as I behave and rest well enough, eat frequent enough and the right stuff and control my environment, and don’t become overly stressed I won’t get migraines. Bottom line is that it is better now in stead of completely debilitating most of the time.
    Ask your neurologist to give it a try, you don’t have much to loose at this point. If it improves things awesome, if it doesn’t you’ll still be in the same boat rowing with the same oars. I was not very hopeful when I tried out the new meds, but the difference was immense. I can only hope that you can see similar or better results. Good luck!

  • Katie M. Golden moderator
    4 years ago

    I am so sorry you are going through this. I can understand how your unique combination of illnesses makes life feel very lonely. We have a Forums section where you can connect with others who have basilar migraines.

    While I don’t know of any specific support groups for your conditions, here are some other resources:

    Online Therapy

    Inspirational Book:
    Battle for Grace

    Facebook Groups for Migraineurs:
    Migraineur Misfits
    Surviving Chronic Migraines
    My Song and Thought for the Day

    I hope some of this helps. Best wishes!
    -Katie Moderator

  • Tamara author
    4 years ago

    Thank you! I will look into these things. I appreciate your help. Tamara

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