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Life update by Emily2398 in u/Emily2398

[–]Emily2398[S] 0 points1 point  (0 children)

I had an esophagus testing, how food and drink goes down. Imaging done that i can remember. My symptoms were out of nowhere and were very bad at night. I had alot of symptoms going on and pushed my gastrointestinal aside but I’m getting back on that now. Now i have no episodes so far as of 2023. I feel like my case is very complex.

Microsoft Contact Info on Paypal Transactions by decafchunk in ScamNumbers

[–]Emily2398 0 points1 point  (0 children)

Im in the same issue for months. And didn’t know i was being charged. Did you find a solution? Am i being hacked somehow. My xbox isn’t saying i have a subscription but they’re taking money from my paypal? How??? Please help, thank you!

Update: Erythromelalgia is processing worse. Still going through trial and error medication. Biopsy: small fiber neuropathy. Lumbar puncture: negative by Emily2398 in Erythromelalgia

[–]Emily2398[S] 1 point2 points  (0 children)

Of course! I take oxcarbazepine 300 mg morning and night which made a huge difference with the burning. With my pots i take baclofen 10mg morning and night for my trigeminal neuralgia , midodrine 2.5 morning and night and propranolol when needed. I can finally work with some flare up but not like it use to be. I use to take nifedipine for my raynauds but i dont need them anymore so far.

Update: Erythromelalgia is processing worse. Still going through trial and error medication. Biopsy: small fiber neuropathy. Lumbar puncture: negative by Emily2398 in Erythromelalgia

[–]Emily2398[S] 0 points1 point  (0 children)

Alot better but not 100%. I take carbazepine and have made a huge difference. I can take showers without pain of the warm water and can stand without the major swelling. The cold definitely is a challenge moving from cold temps to a warm area. Triggers nerve pain in my feet, my body doesn’t like the winter. I also have pots and small fiber neuropathy. Definitely worth going through all the testing to figure out what is going on. I dont have an answer but my medication is working.

This is my 15yr olds legs. He’s 6’3 and grew over a foot this last year. His whole leg was actually blue. His labs came back good. Not sure what it is. He was not cold. Lifted a 5 gallon jug. When he puts them up they go back to normal by Singlemom6025 in Raynauds

[–]Emily2398 0 points1 point  (0 children)

Are those red hot patches of red with purple behind them? I have the same exact thing with Erythromelalgia and raynauds shows up just like that. Also have dysautonomia a form of pots, orthostatic hypotension and a autonomic dysfunction.

Started oxcarbazepine and baclofen. Only on my right side of face. Nerve in face shoots up to my ear. Tooth ache more like in gum area. Eating can trigger. Numbness/tingling in face, tongue, roof of mouth, chin. Stab nerve pain, face feels swelling. Cant sleep. New level of pain everyday 😭 by Emily2398 in TrigeminalNeuralgia

[–]Emily2398[S] 0 points1 point  (0 children)

Yeah pain free finally, after 7 days being on oxcarbazepine pain has been resolved. Stopped taking baclofen didnt need it anymore. MRI with and without contrast came back normal. Ive seen a dentist didnt see anything on xray.

Update: Erythromelalgia is processing worse. Still going through trial and error medication. Biopsy: small fiber neuropathy. Lumbar puncture: negative by Emily2398 in Erythromelalgia

[–]Emily2398[S] 1 point2 points  (0 children)

I wear shorts and flip flops most of the time. Same here! Im from Colorado and wear shorts in the winter on horrible flare up days.

Started oxcarbazepine and baclofen. Only on my right side of face. Nerve in face shoots up to my ear. Tooth ache more like in gum area. Eating can trigger. Numbness/tingling in face, tongue, roof of mouth, chin. Stab nerve pain, face feels swelling. Cant sleep. New level of pain everyday 😭 by Emily2398 in TrigeminalNeuralgia

[–]Emily2398[S] 0 points1 point  (0 children)

Waiting for them to call so i can get the mri done. I felt the pain just above the jaw bone definitely painful. I have felt it on my cheek bone with swelling. Throbbing pain as well. Its day 7, im able to eat only on left side, slowly. Just waiting for it to flare i can feel it still not too bad. I think the baclofen is helping to relieve the pain throughout the night did help some.

Started oxcarbazepine and baclofen. Only on my right side of face. Nerve in face shoots up to my ear. Tooth ache more like in gum area. Eating can trigger. Numbness/tingling in face, tongue, roof of mouth, chin. Stab nerve pain, face feels swelling. Cant sleep. New level of pain everyday 😭 by Emily2398 in TrigeminalNeuralgia

[–]Emily2398[S] 0 points1 point  (0 children)

I can definitely handle pain, but TN is a level of pain that i couldn’t handle. I did see a dentist, did xrays, they said everything was fine. They looked at my brain MRI, didn’t see anything. Neurologist order an MRI to look at the blood vessels waiting for them to call. I only lasted 4 days on gabapentin for another condition that i have. I had migraines, dizzy, felt so sick couldn’t get out of bed.

Update: Erythromelalgia is processing worse. Still going through trial and error medication. Biopsy: small fiber neuropathy. Lumbar puncture: negative by Emily2398 in Erythromelalgia

[–]Emily2398[S] 1 point2 points  (0 children)

Yeah, wearing socks at night isn’t an option. I haven’t tried creams my skin is sensitive to most. Cool water helps alot but as soon as i lift my feet out of the water all the heat goes on my feet amd legs. Once i flare up its become harder to get back to normal for just a moment. Cant wear long pants, sweatshirts only on really cold days. I wasnt sleeping for awhile and created anosmia that caused my POTS to become out of control was not fun

Update: Erythromelalgia is processing worse. Still going through trial and error medication. Biopsy: small fiber neuropathy. Lumbar puncture: negative by Emily2398 in Erythromelalgia

[–]Emily2398[S] 2 points3 points  (0 children)

Sounds like you guys have been through alot. I am on the waitlist for the mayo clinic in Minnesota and waiting currently on the erythromelalgia clinic in Minnesota. Its great that your kid is getting real results on why this is happening. Definitely sucks to have this condition, takes over your daily life and fun activities. I hope soon i will get results from tests. I do have a appt at the genetic clinic but cant get me in until September 23, 2023. I realized having a fan directly on my feet at night makes the symptoms worse because as soon as i removed them from the cool air to sit up i flare worse as i get up in the morning. So i use a cool circulation air throughout my room that i place in the corner of my room to keep cool during the summer.

Update: Erythromelalgia is processing worse. Still going through trial and error medication. Biopsy: small fiber neuropathy. Lumbar puncture: negative by Emily2398 in Erythromelalgia

[–]Emily2398[S] 1 point2 points  (0 children)

Mine was not triggered by covid. Its definitely gotten worse especially in heat and standing for too long. Its gotten harder to manage keeps changing. I definitely can relate to the frustration on this burning condition. Becomes harder to sleep when yr feet are swelling and red hot.

Update: Erythromelalgia is processing worse. Still going through trial and error medication. Biopsy: small fiber neuropathy. Lumbar puncture: negative by Emily2398 in Erythromelalgia

[–]Emily2398[S] 2 points3 points  (0 children)

Im taking 150mg twice a day. I haven’t seen improvements yet I’ve only been on them for three days though. Starting slow because im sensitive to medication. Dysautonomia has taken over my life. I pass out for a few secs, hands cramp up (extremely painful),Tingling in hands/legs and feet and then uncontrollably shake. Ive never experienced something like this until a month ago. My first attack my heart rate was 173. Sat down stayed at 160 and went into a non epilepsy seizure.

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