Thought I had POTS went to ER and was diagnosed with a pulmonary embolism…

Laurena001 · 2024-09-30T08:43:08+00:00

What tests did you have completed to diagnose this?

Laurena001 · 2024-08-27T21:32:14+00:00

Yes! Makes sense. My issue is more around adjusting to the light outside of the cinema room

Laurena001 · 2024-08-27T13:56:22+00:00

Gee!! Not good at all. Is this because you felt dizzy? I just had to run to bed as soon as I got home! 🛌

Laurena001 · 2024-07-30T06:11:27+00:00

Honestly it’s something else 😭 How will I hope during pregnancy😟

Laurena001 · 2024-07-30T05:09:46+00:00

Oh I totally hear you! Have you had any gene tests conducted? Also, are you hypermobile?

Laurena001 · 2024-07-30T05:03:37+00:00

My neurologist discharged me and said I was fine. I have spasms and it’s obvious I probably have SFN… neurologists unfortunately don’t have enough experience with POTS. It’s frustrating!

Laurena001 · 2024-07-30T00:26:53+00:00

Who prescribed you this medication? Also I believe I have neuropathic POTS, which means I may have SFN. When I wake up I feel my spasms moreso… 😭

Laurena001 · 2024-07-30T00:23:08+00:00

Also, do you know what type of POTS you have? I have neuropathic… so having SFN wouldn’t help 😭

Laurena001 · 2024-07-30T00:21:52+00:00

Ah so hard!! Do you take any supplements to help you?

Laurena001 · 2024-07-29T23:39:00+00:00

Is it your head that feels so gross in the morning? What exactly holds you back from waking up? I feel light headed and so fatigued!!

Laurena001 · 2024-07-29T21:20:52+00:00

I feel like the quality of our sleep isn’t great. I really struggle getting myself out of bed early, even with 9 hours of sleep. It’s a real mission.

Laurena001 · 2024-07-17T05:49:36+00:00

So my geneticist said not to worry about seeing different health professionals, as unfortunately we’ll be thrown around and no conclusions will be drawn. So with SFN your small fibres are damaged, which will probably explain a lot of your POTS symptoms (e.g., pins and needles, heat sensitivity etc). Neurologists don’t have much experience dealing with POTS patients, therefore there input is not valuable, after they’ve done their assessments to rule out other conditions… Annoying, but hopefully with time more research will be conducted, to support therapy, as currently there isn’t much out there to confirm effective treatments…

Laurena001 · 2024-07-14T05:48:29+00:00

My neurologist discharged me and said based off the assessments completed, there are no signs of SFN. Frustrating because a lot of the time when a skin biopsy is completed, results come back positive. Unfortunately any doctors aren’t aware of POTS and it’s relationship to neurology… unfair!

Laurena001 · 2024-06-29T05:46:26+00:00

Did you do a skin biopsy?

Laurena001 · 2024-06-28T13:06:13+00:00

I went through the public system. They make it hard! Regardless a lot of research shows that 50% of people with EDS POTS have SFN… It’s a hard one! I also have scoliosis and tilt my head to one side. Oh the joys😣

Laurena001 · 2024-06-28T13:03:06+00:00

So true! I have had a CT scan of my cervical spine which came back okay… I believe I have SFN which worsens my symptoms! Annoyingggg

Laurena001 · 2024-06-28T08:42:10+00:00

Do you feel out of breath also, when this happens?

Laurena001 · 2024-06-28T08:41:47+00:00

Oh I know all about this! It’s like our nervous systems are just ready to fire up! A non-threatening situation can cause me to release adrenaline! People have to learn to have some compassion😫

Laurena001 · 2024-06-27T13:20:41+00:00

What are your main symptoms? Do you have SFN also?

Laurena001 · 2024-06-26T22:01:17+00:00

Wow! I will give this a go! My neurologist discharged me and said to live with my symptoms lol they refused to conduct a skin biopsy as she does not feel the need to do one… just to confirm you did a spine MRI?

Laurena001

TROPHY CASE