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#anxious about answers!

Finally got a long awaited brain MRI and now the waiting game begins. I meet with my #neurologist at the end of the month.

What I have the most #Anxiety about, is not even knowing what I am hoping for. Outside of some sort of definitive idea of what I am dealing with and possible/probable treatments and solutions.

But I have just started thinking about worst case scenarios, and what if I get called sooner than expected because it's life threatening or something.

Just looking for others who have been in this limbo. #CheckInWithMe #Migraine #EhlersDanlosSyndrome #Headache #ChronicPain

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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


#IntercranialHypertension or #Chiari ?!?

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

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Is anyone else dealing with regular Migraines that are a side effect from Long Haul Covid! I am having them up to 16 a month 11 of the last 12 days

#Migraine #Headache #longhaulcovid #longcovid #SideEffects # debilitating #Migraines #long haul Covid #side effects #long Covid #darkness #sumatriptan #Baclofen #neurologist #neurology #Brain # brain meds

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Neuro (logist/psychologist) Possibility #neuropsycholgy #neurologist #BorderlinePersonalityDisorder #Depersonalization

My psychiatrist is recommending I go to a neurologist and try to get into a Neuropsychologist because of cognitive issues: forgetting words (tip of my tongue, but can't get it out several times a day), not being able to remember if something actually happened or I dreamt it, trouble focusing eyes during depersonalization and anxiety issues.
Does anyone have any experience with this? Any advice?
My symptoms of all of my diagnoses are just skyrocketing and I just got a med switch tonight, but currently the meds have been doing very little (ALOT of meds), and I am losing the will to even try. I'd be fine sleeping all day and staring at the ceiling. I'm not suicidal or having urges to drink, but I'm falling away from myself. When I am not feeling a million miles away from myself I am anxious or crying.
I don't think I'm capable of working full time. I can't even do dishes or remember to eat.
I'm just lost and desperately want more help because I don't have the energy to pull myself out of this. Ongoing since April.
Tomorrow is 18 months sober, so yay. #BipolarDepression #Anxiety #Sobriety #Recovery #Addiction #DepressiveEpisodes #tired #Fatigue #Sleep #CognitiveIssues


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


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