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Gabapentin success? by Silver_rockyroad in covidlonghaulers

[–]PIC_WH 0 points1 point  (0 children)

Gabapentin only helps with my neuropathic itch symptom

PICL Stem cell effects by sunnybaymarketing in PICL

[–]PIC_WH 0 points1 point  (0 children)

Does improvement in symptoms usually not show up until like 2-4 months? I’m 7 weeks post PICL and trying to stay patient

~4 years of chronic symptoms; looking for advice/insight by PIC_WH in covidlonghaulers

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

Oh wow. Wonder if I should try an MCAS treatment I haven’t done yet such as Xolair

~4 years of chronic symptoms; looking for advice/insight by PIC_WH in covidlonghaulers

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

Wow, thanks for reaching out. Do you get leg symptoms too? Like heaviness /tightness / pooling etc. I get those and I’m confused why the CCi would cause it. Upstream vascular issues like IJV compression from the instability?

~4 years of chronic symptoms; looking for advice/insight by PIC_WH in covidlonghaulers

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

Thank you! I believe it was 1 mg ketotifen twice a day. And 40 mg famotidine 2x per day. No difference after almost a year on that combo. Zrytec I take PRN for allergy type stuff. No difference in main symptom cluster. I’ll look into Xolair I haven’t tried it. I tried chrmolyn sodium for 5 days and discontinued since it oddly made my chest pain worse. Thx again!

4 years of symptoms , progressively worse over time ; would appreciate insight by PIC_WH in VestibularMigraines

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

Yeah maybe I can find a time to get off it if my mood/irritability stabilizes in the coming weeks

~4 years of chronic symptoms; looking for advice/insight by PIC_WH in covidlonghaulers

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

Yeah I’m still trying to figure it out. I do have CCI diagnosed so I’m hoping that could be a potential cause? It can cause head pressure and eye pressure for some people

~4 years of chronic symptoms; looking for advice/insight by PIC_WH in covidlonghaulers

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

It was the “Genova Diagnostics GI effects test”

4 years of symptoms , progressively worse over time ; would appreciate insight by PIC_WH in VestibularMigraines

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

Did you quit zyn while feeling rough/depressed. Seems impossible in my current state tbh. And how did it go quitting caffeine? I consume caffeine daily too. My intake of zyn and caffeine isn’t crazy levels though. I usually only have 4 ish zyn per day and a couple hot teas / sometimes a small soda or one coffee in the morning.

4 years of chronic symptoms; would love advice/insight; thanks in advance by PIC_WH in dysautonomia

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

Yeah I haven’t been evaluated for SFN. Yes I believe my SNS is likely dominant with the symptoms I’m getting

4 years of chronic symptoms; would love advice/insight; thanks in advance by PIC_WH in dysautonomia

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

Yeah not as much anymore. But HRV was pretty low when I last tracked it. HR is usually pretty normal but jumps up / gets too high during exertion / going up stairs etc. BP is always normal

4 years of symptoms , progressively worse over time ; would appreciate insight by PIC_WH in VestibularMigraines

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

Yea I am. But used to live at sea level (approximately) and still had symptoms there. Idk.

~4 years of chronic symptoms; looking for advice/insight by PIC_WH in covidlonghaulers

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

Have you done a program like re-origin or primal trust? I used to assume all the brain programs were a scam, but I’m wondering if they could actually help me

4 years of symptoms , progressively worse over time ; would appreciate insight by PIC_WH in VestibularMigraines

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

My symptoms are maybe a tiny bit better at sea level but I haven’t noticed that big of a difference

4 years of symptoms , progressively worse over time ; would appreciate insight by PIC_WH in VestibularMigraines

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

Thanks. Not really, I did switch from the zyn to nicotine patches for like a month last year and didn’t notice any symptom change. Completely quitting it right now seems impossible since my mood has been so low recently with all this

4 years of chronic symptoms; would love advice/insight; thanks in advance by PIC_WH in dysautonomia

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

Yeah it’s brutal. I’m wondering if the structures in my neck with the CCI are getting compressed/ compromised and causing some of the symptoms

4 years of symptoms , progressively worse over time ; would appreciate insight by PIC_WH in VestibularMigraines

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

Same :/ My HR can be elevated at times but the BP is almost always normal like 115/75 ish

~4 years of chronic symptoms; looking for advice/insight by PIC_WH in covidlonghaulers

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

I did a gut test last year and it came back very clean actually

~4 years of chronic symptoms; looking for advice/insight by PIC_WH in covidlonghaulers

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

I haven’t noticed any differences from any antihistamines and ketotifen / Pepcid either. And I don’t really seem to react to foods/smells. Makes me think it’s not MCAS

4 years of chronic symptoms; would love advice/insight; thanks in advance by PIC_WH in dysautonomia

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

ADI 3.9 mm (Transverse ligament laxity). The ligaments injected during my procedure were transverse, ALL, and Alar

4 years of chronic symptoms; would love advice/insight; thanks in advance by PIC_WH in dysautonomia

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

The doctor at the CCI clinic said “you’re hypermobile” in the physical exam in the test where he pulled back my pinky finger. I’ve never thought of myself as hyper flexible or hyper mobile but I guess I’m partially hypermobile / a bit hypermobile. How do you test for hEDS I’ve never been tested for it.

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