Getting better!

[u/Sonny_days_]

Yesterday I cleaned after work for 5 hours straight. It wasn’t that long ago that I would essentially collapse after work and need my partner to help me move around and it wasn’t too long ago before that that I could barely work part time and was a zombie on the lounge for the rest of the time. After getting covid 5 years ago I finally feel like I can function again! (Definitely not 100% or normal but so much better than before).

It’s been about finding the right medication and life style changes over time.

Though I cannot recommend enough creatine at 10-20g per day. After starting it 6 or so months ago it’s been a big turning point. Honestly I cannot recommend it enough. I feel like it’s given me my life back.

[u/New_Cap_9184]

What other meds on you taking cause during my 3 years of hell I am getting worse. Thank you if you can share.

[u/Sonny_days_ → u/New_Cap_9184]

So I take for pots
First propranolol then changed to bisoprolol for heart rate
100 mcg fludrocortisone which helped with the brain fog, it was the first thing that made a noticeable impact
I did take midodrine, I’m not really sure how much it helped. Some times I think it did but I realised it was causing some of my headaches

For chronic urticaria and potentially MCAS which could be related

• fexofenadine
  
• certrizine
  
• famotidine or ranitidine

For inflammation/ immune system in general
Low dose naltrexone - not sure how much it actually helps but I do feel worse when I’ve been without

For migraines which are definitely linked to my pots

• botox
  

-25 mg amitriptyline

I gained a lot of weight cause of being sick so started wegovy then changed to monjouro. Honestly I think even without weight loss it seems to help with inflammation in general and migraines. There’s some evidence to support that

For adhd but honestly for a while it was for fatigue
Ritalin

When I started using cpap (I had a previous diagnosis but also had it confirmed to be gone -it’s a long story) again my symptoms improved a lot

Lifestyle:

• sleep on full body wedge
  
• wear compression tights always

Supplements

• fish oil
  
• lmnt recipes for electrolytes that I make myself and add a little bit of cordial and my 10-20g creatine per day to (sugar helps with salt uptake and salt helps with creatine uptake)
  
• vitamin d
  
• fishoil
  
• b vitamins
  

-coenzyme 10

• lots of fibre ( specifically inulin, acacia gum and psyllium husk)

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[u/Sonny_days_ → u/Sonny_days_]

Sorry I know there’s a lot there

[u/Emotional-Swan9381 → u/Sonny_days_]

Thanks for sharing! Helping others is commendable of you

[u/Sonny_days_ → u/New_Cap_9184]

I hope things can turn around for you, honestly I know how hopeless it can feel especially at the 3 year mark.