Join the Conversation on
85 people
0 stories
12 posts
Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
  • Explore Our Newsletters
  • What's New in
    Community Voices

    Sleep Deprived EEG Tests

    I’m going to be having an eeg test soon for the first time. I just found out its a sleep deprived one.

    Have you had this test and can you tell me your experience with it? I’m wondering why the neurologist ordered this kind (sleep deprived) specifically.

    Did it get you and your doctors closer to proper diagnosis? #EEG #testing #Nerve and joint pain #neurologist #Diagnosis #mobility #Tinnitus #Epilepsy #ChronicPain

    32 people are talking about this
    Community Voices

    In 2019 I randomly started having hemiplegic migraine s and had them for 40 days straight-my neurologist dx me w HI after I end Ed Up in er and they did spinal tap and mri . The past week I started having major symptoms again and I wanted to ask him about Chiari. Here is how it usually go’s: neck stiffens, then eye zig zags swirls , phantom smell, left side face droop, aphasia, then the screaming pain behind my right eye. And it’s like a throbbing cymbal inside my head. Severe dizziness especially when eyes closed or walking, so falls happing. Nausea and vomiting. This time it slowly crept up, I thought I just pinched a nerve in my neck cuz I can hardly turn left, went to chyro and as soon as he adjusted I got a Sever headache and dizzy, then it’s just gotten worse ever since. I have all of the above symp except my eyes are just swollen and pulsing, and my head pain is less intense. Oh and severe neuropathy. Any one agree it’s JUST IH or could I possibly have chiari ? #IntercranialHypertension #ChiariMalformation #HemiplegicMigraine #spinaltap #neurologist

    1 person is talking about this
    Community Voices
    Community Voices
    Community Voices
    Community Voices

    Yet again left confused # #Fibromyalgia #chronicmigraine

    I’m so confused. Just spoke to neurologist, who didn’t have my notes up so explained that pain management consultant diagnosed me with fibromyalgia in January-taking me off all injections and weaned off medications for chronic migraines. I described symptoms in between migraine attacks and that they intensified when having migraine attack. I reduced amitriptalyn and came off pregabalin as advised by Pain management and she said I can try and go back on them. 🤷🏻‍♀️ offered me Goni injections again although we discussed that these aggravate fibromyalgia and make migraines worse. Referred for vit b 12 and thyroid blood test. And on waiting list for Ajoy. She ended by saying the pain you have is all ‘just fibro’ related and the patients that have best results with fibromyalgia take control of it.

    So basically I feel like what I’m doing is not good enough although the amount of research I’ve done and totally changed my lifestyle, diet, routines, supplements and withdrawals from pain medications, pay loads out on alternative therapy, reduced working hours. All since January.
    I know I’m doing my best, it’s a working progress for sure.

    How long did it take you to get a real grip on fibromyalgia symptoms to manage it in a ‘best fit’ way???
    I needed to vent to people who know. Xxxx

    #Fibromyalgia #neurologist #Medication #itsjustfibro #Allodynia

    10 people are talking about this
    Community Voices

    So I met my new neurologist today by video appointment. He was looking at my MRIs and said that there should be lesions because I have Cerebral Palsy. He then proceeded to ask me at least five times who diagnosed me. Considering that I was under two years old and I don’t have my medical records next to me, I say “I don’t know” each time. After that, he quickly diagnosed the pain I’ve had for years in my scalp. Should I let the badgering bother me? I know I have CP and the doctor did address the pain I’m currently in; plus, it was a video call, which makes a first meeting awkward. IDK.
    #CerebralPalsy #neurologist #venting

    Community Voices
    Community Voices

    My doctor is referring me to a neurologist, what can I expect and any key things I need to I ask? #Fibromyalgia #neurologist

    1 person is talking about this
    Community Voices