u/NitroMacks

I've been eating less and less because digestion itself is extremely hard for my body.

I'm already on a somewhat liquid diet, low histamine and all that

Every time I eat something I get incredibly painful one sided tinitus "shocks" that go through my neck into my chest, along the vagus nerve I think (usually my warning sign for massively overdoing it).

How do I stop crashing from digestion? Is it time for a feeding tube? :(

Ich bin schwer betroffen und habe Angst vor einem Benzo Entzug.

Ist jemand bei ihm in Behandlung?

Meinungen dazu?

TLDR: Looking for advice on 3 weeks lorazepam at 0,5mg. Taper necessary?

I took lorazepam 0,25 daily for about a week, then 0,5 for a week, 0,75 for 3 days and then back to 0,5 for 4 days. I am now back at 0,25 (0,125 twice daily) and am wondering how I go on from here?

I am very sensitive to meds and changes.

My neighbor is a doctor and said it would be fine if I just went on 0,125 once daily for a few days and then stopped.

I have NO CLUE if I am experiencing withdrawal symptoms or not because my ME symptoms are literally exactly the same symptoms as benzo withdrawal symptoms and they have been unbearable before the benzos already. I was already in severe rolling PEM before benzos and I am definitely crashing more now and have more adrenaline. But my symptoms are so random anyways...

Any advice? Is it better to get off quicker for me?

(I want to stop now because it made me ignore my symptoms too much and I was pacing worse and I really don't want a worse withdrawal on top later).

I've been on lorazepam due to a severe chronic health condition and I could need some advice as my ability to research is very limited due to said illness (ME/CFS).

I took 0,25 daily for about a week, then 0,5 for a week, 0,75 for another week and then back to 0,5 for a week. I am now back at 0,25 (0,125 twice daily) and am wondering how I go on from here?

I am very sensitive to meds and changes.

My neighbor is a doctor and said it would be fine if I just went on 0,125 once daily for a few days and then stopped.

I do have some mild withdrawal symptoms since switching to 0,25 3 days ago but it's not too bad.

Any advice? Is it better to get off quicker for me?

Pacing is already my religion. My mum spoonfeeds me tiny blended meals and I'm still getting worse.

Already total darkness and silence. I can't move.PEM from moving in sleep and digestion.

Benzos help but make me ignore symptoms too much so I crash even harder.

I don't want to be tube fed...

I'm losing hope...

Pls short answer, no poop for a week, digestion slow, won't come out and sitting=pem

Thx

Benefits? Side effects? Risks?

Don't see too many people try antivirals.

What are your experiences with Mestinon or Midodrine?

I have low blood pressure and heart rate and my POTS is going crazy.

I'm severe and don't want risk too much and I'm not sure which to try first.

I started 5 days ago and all these symptoms worsened significantly: Air hunger, dizziness nausea, palpitations ,pots, headache, Head pressure, migraines, Tinitus, brainzaps and Derealization...

It did improve fatigue, but the trade off would absolutely not be worth the side effects.

Should I give it another week? I feel horrible...

Would I already need to taper off at this dose?

The last few weeks I really took pacing very seriously and stopped going to the toilet, eye mask and earplugs and doing absolutely nothing to get out (what I thought) of rolling PEM.

Instead I am still getting worse.

I also don't seem to recover from PEM at all (also before this). EVERY crash lowers my baseline to the level of function I have during it. I went from mild to very severe in 5 months. I also have chronic swollen and painful tonsils, sinuses and mucus since this decline started, but they haven't found any ongoing infections.

I don't know what to do...

I mean outside of PEM. Are there any other illnesses where people develop such severe sound or light sensitivity or even emotions can make you feel like your dying?

It's so frustrating...

Hey everyone! Firs post, so hi!

I have very severe Mecfs, so exercise is out of question and since becoming bedbound my POTS is going absolutely crazy.

But my hr during sleep sometimes drops to 42 and my blood pressure is mostly around 100/60.

Which meds are safe to try? Electrolytes and compression don't do much.

Already turning around in bed or eating a small meal spikes my hr by 30 bpm...

From what I've read Fludrocortison could help me?

I know some people smoke weed, but I don't tolerate that. Is there anything else that doesn't make you addicted?

I can't tolerate light or sound. How do I get out of rolling PEM? The darkness and silence are driving me insane.

Is this just a CFS thing?

I am running on adrenaline the whole day until the evening. It usually starts after going to the toilet for the first time and lasts the whole day. Always with palpitations / strong heart beat, but no tachycardia.

I don't have it in the nights and it gets worse with physical and mental exertion. It's not triggered / connected by food or anxiety for me. I can have a completely empty mind while my body goes crazy. Elektrolytes help the palpitations but not the adrenaline. And actually it's usually better in PEM because my body is too exhausted to produce adrenaline it feels like.

What helps against this? It's driving me insane. I want to calm down.

I tried to start LDN for a week (0.05mg) and after a few days I started to have internal tremors (feeling like there is an earthquake in me, but no visible shaking).

I stopped now, but the sensation is still there.

Anyone experienced this?

I have alot of MCAS symptoms, but don't respond to antihistamines (tried Allegra and Cetirizin) or Quercetin.

Also low histamine diet didn't do anything (I don't react to histamin rich food).

But I do strongly reach to smells and chemicals.

What else can I try as a treatment?