New and unsure

Hey people,

I'm new to this group and hoping I actually belong here. Not entirely sure.

I have chronic migraines of multiple varieties, (unilateral & bilateral, with visual aura, Vertiginous migraines, Drs also suspect I get cluster headaches).

I also have sensory processing issues (photosensitive, hyperacusis, acute hearing and tinnitus and phonophobia; all diagnosed even though they sound like they are the same!!).

Due to the vertigo I also now seem to have a balance disorder. I'm getting problems with sensation, my entire body, especially the arms and legs have had numbness and paresthesia for 13 months now (getting worse).

All my symptoms or conditions seem atypical which makes diagnosis hard and treatment, at this point, impossible. I'm on no medication as the last time they tried medication I ended up on 26 meds a day, and had a very bad psychological reaction! Didn't notice them helping either.

I've been requesting a support group referral from gps who say I'll get it once I'm diagnosed, and as soon as I'm diagnosed I'm told such things don't exist, so hoping this can be a support network for me. And hopefully I could offer support to others too. :)

In case thanks for reading. :) Wishing everyone spoons and good health~

4 Replies

  • It sounds like it could be FND, which is a blanket term for unexplained neurological symptoms. Has this been suggested to your doctor. You, and your doctor should check out Best of luck.

  • Hey! Welcome.

    I think everyone here will have a mix of symptoms but all with diagnosis of FND and although it may seem a grey area.... Until we accept it, we won't be able to fight it more ;)

    So sit back, relax... If we can lol... And just encourage each other in this :-)

  • Hi, and Good Morning, i was going to ask where you are from but your last line gave you away. I am from the states, and yes you are in the right place. Glad you found us...:-) please take some time to read some of our posts, I think they will be helpful and give you some comfort that you are not alone. If you have questions ask away, just need to talk, we love to hear from your. This is a safe place, and we are all in the same boat, one way or the other. God Bless, Cathy :-)

  • I'm not sure what you mean when you say your diagnoses and symptoms seem atypical. If you mean atypical of FND you might find this site helpful.

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