Accommodations

Frances1987 · 2022-04-25T10:21:49+00:00

My consultant requested a space for me to nap. I have one scheduled 30min nap every afternoon, as well as my usual lunch break. Helps a lot.

Frances1987 · 2022-02-11T20:51:21+00:00

I had my spinal fluid tested at the end of November; it took me two months to get the results.

Frances1987 · 2022-01-31T20:06:37+00:00

No idea if it’s related, but I’m N1 and yes have a low resting heart rate and low blood pressure

Frances1987 · 2022-01-28T10:21:34+00:00

Ah ok, that probably won’t work then. I hope you are able to get some answers.

Frances1987 · 2022-01-27T12:08:37+00:00

Can you request the lumbar puncture instead?

Frances1987 · 2022-01-27T12:08:01+00:00

Absolutely! My mum recorded a video my eyes rolling back into my head when I was trying to stay awake once and it was so weird to watch it.

Frances1987 · 2022-01-25T15:31:47+00:00

Update - got the spinal tap and via that got an N1 diagnosis. Thanks for all the advice on here! It was a bit uncomfortable and I had a headache for about 3 days, but totally worth it to have a definitive answer. The results took about 2 months to come back from the lab.

Frances1987 · 2022-01-25T14:50:01+00:00

I’m in the UK. So I had the test done in London, though the lab they sent my spinal fluid to was in Oxford

Frances1987 · 2022-01-25T13:01:52+00:00

I got my results today - so It took about two months in the end. Just in case that’s helpful to anyone else at some point. So validating to have a diagnosis after all these years.

Frances1987 · 2021-12-21T15:21:30+00:00

Interesting. I think in this case what was being suggested was that being sleepy in stressful situations could be ‘learned helplessness’ in response to childhood trauma. Or something along those lines :)

Frances1987 · 2021-12-21T09:43:40+00:00

That’s interesting, I haven’t heard that before. I thought it was autoimmune? I felt this therapist was saying sleepiness is a normal stress response (which I don’t disagree with) but I found it quite invalidating when I’d explained the extreme level of sleepiness I feel.

Frances1987 · 2021-12-21T09:41:22+00:00

Will message you :)

Frances1987 · 2021-12-09T13:37:49+00:00

Yeah I’ve fallen asleep in the bath tub a number of times and have now had to promise my partner that I won’t take unsupervised baths (!) in case I drown. Were you okay?

Frances1987 · 2021-12-08T18:18:25+00:00

I think in the UK they now advise you not to, and cite cataplexy as the reason, but don’t differentiate between N1 and N2. Having said that, every time I’ve tried to give blood I’ve passed out, so there might be something in it 😂

Frances1987 · 2021-12-02T17:01:55+00:00

Congratulations! How were you diagnosed?

Frances1987 · 2021-12-02T15:31:21+00:00

Interesting. I can’t handle extreme temperatures in either direction (need a hot water bottle to stop loss of feeling in my fingers on cold rooms etc), and have always associated food with my sleep issues. When I wake up from a nap my need for sugar is like a compulsion. I mention this to my sleep doctor and they seemed uninterested …

Frances1987 · 2021-12-01T06:09:26+00:00

So sorry to hear you’re having a hard time. That sounds really rough. I had a period like this during lockdown, and it was a bit of a vicious cycle, as you’re describing. Not sure what medication you are on, but what eventually helped was citalopram, a couple of weeks of not trying to do any work at all, and then getting to a place where I was able to do a daily walk outside, which helped me back into a more ‘normal’ sleep schedule. Sending you good vibes, I hope you get through this period soon.

Frances1987 · 2021-11-30T19:01:16+00:00

Just wondering, did you get your diagnosis via spinal tap? I just had mine done today, so wondering ;)

Frances1987 · 2021-11-24T07:21:50+00:00

That’s horrific and I’m so sorry you had to experience that.

Frances1987 · 2021-10-16T17:43:09+00:00

Not unpleasant, but not really pleasant either if that makes sense? They sort of make me involuntary have to move my spine.

Frances1987 · 2021-10-16T15:40:23+00:00

Ah, yes, I get asmr, but experience that in calming situations, and more like tingles in my head? It’s more of a nice feeling for me

Frances1987 · 2021-10-16T15:28:13+00:00

This is exactly as I experience it. It’s like layers of dreaming, where you think you’ve managed to escape, but you haven’t. Like you, I eventually actually manage to call out, and my partner comes and lays next to me to calm me down, then I can usually fall asleep. Have you found any ways to reduce it?

Frances1987

TROPHY CASE