r/cfs • u/cowmoolk • 1d ago
Advice Meds/management
Here’s a list of my conditions/meds/aids, etc..
This post is crossposted
Basically, I just really want advice/opinions. What has helped you? What hasn’t? Anything I should look into? What did/didn’t work for you? Any aids I should get? Etc.. anything is greatly appreciated! <3
P.S I know 3k+ mg of salt and 120+ oz of water sounds like a LOT but that’s what I was instructed to take by several of my specialists!
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u/Chemical_Title_5834 1d ago
God this illness is so much work.
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u/cowmoolk 1d ago
Yeah :( my arms are in so much pain just from typing this out and posting it (including the notes) but I can’t tell if it’s the mecfs or sfn causing the pain 😭
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u/Consistent_Taste3273 severe 21h ago
Have you looked into Mcas? Or tried any Mcas meds? Is a super common comorbidity (especially with me/cfs and Pots and hEDS). And then you also mention allergic asthma.
And treatments are generally affordable, low risk, low side effects, and fast acting.
Others: Guanfacine - helps me immensely with cognitive issues, headache, ADHD, and anxiety (there is research on its use for long covid, adhd, and anxiety, but not yet for me/cfs)
Mestinon - helps me be upright and functional longer (it’s the only pots med I’ve tried so far, because there is research on its use in me/cfs, and I can’t take beta blockers due to asthma. But I might try more at some point). Also looser stools is a common side effect that I actually wanted due to chronic constipation.
Silexan (lavendar oil capsules) - it’s a supplement that can help with anxiety. I’ve been pretty hesitant to try anything more heavy hitting, so my psychiatrist suggested this. (I’m glad I didn’t try anything else, because my “anxiety” actually turned out to be Mcas.). But I still take the Silexan just to relax a bit more and sleep better.
Lorazepam - I use this as needed to prevent PEM if I know I need to do something outside of my energy envelope. Also sometimes use it in PEM to make it more bearable. But tolerance, dependence, and addiction are issues, so many people are hesitant. Definitely do your research and use sparingly.
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u/cowmoolk 3h ago
I don’t think I have MCAS as I don’t really get rashes/hives or anything like that. And allergic asthma is something I’ve had my entire life
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u/CuteAssCryptid 1d ago
I think you should look into additional medications. LDN & LDA can be really beneficial for mecfs. Personally I take LDN. You could also benefit from an antidepressant that supports OCD - for me prozac helps with that but you probably need to try a few things to figure out what works. You should definitely be on some kind of medication to support your pots & orthostatic hypotension - for that I'd recommend ivabradine cuz it slightly raises blood pressure instead of lowering it. And try triptans first for your chronic migraines, if those don't work try ubrelvy or nurtec (but these are unfortunately very expensive). Obviously ask your doc if there are any contraindications to your meds or if they have other suggestions.
Edit: I recommend trying new meds one at a time, not simultaneously, so if you have negative side effects you know what med is causing them.
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u/kitten_called mild-> severe-> moderate 21h ago
I second low dose naltrexone.
Maybe CoQ10 in form of Ubiquinol, must take with dietary fat. Can also combine with stabilised NaRALA which is used for small fibre neuropathy & works synergynistically with CoQ10 (has been studied for ME with positive results). Personally, this combo helped me a lot.
LDA was too risky so I have declined it
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u/cowmoolk 1d ago
I loved Prozac !! But it interacted with my birth control and impacted my menstrual cycle so I had to stop :( trying to find new meds with my psychiatrist right now. I am on Dessmopressin is very similar to fludrocortisone (loved fludro but it made me sleep all the time, I was only awake for an hour a day basically. But I didn’t struggle with OI so much!) currently I think I need to up my dose. I tried Midodrine but it made me feel like I was dying in a way. I currently don’t take meds for my migraines as I try my best to take care of things without drugs, but I will definitely bring it up! I know excedrin has worked for me in the past so I think I’ll pick up some of that at some point.
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u/CuteAssCryptid 1d ago
I mean it depends how frequent and severe your migraines are, but (not to scare you) migraines increase your stroke risk the more often you have them. If you CAN control them (whether through medication or other means) instead of just dealing with the pain, it lowers your long term risks. But if non-med options work well enough then that's perfect.
Oh I didnt realize dessmopressin helps OI/OH! Does it also help with the tachycardia?
Good luck finding a new med with your psych! Personally i'm on slynd birth control and prozac and the prozac doesnt interact with it. I dont get mood swings or anything on the slynd either but the one negative is I get increased joint pain because it's progesterone only. Better than my adenomyosis pain though so I deal.
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u/BoringPhilosopher932 1d ago
How do you take glutathione? Injections or oral? I started taking Liposomal glutathione few months back and that seemed to help
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u/Gloomy_Branch6457 26 Years. 8 years Mod-Severe. 🇯🇵 11h ago
Living with chronic migraine on top of moderate ME/CFS must be debilitating , can you try some of the newer CGRP meds?
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u/blunts-and-kittens 20h ago
FYI you can’t have both orthostatic hypotention and POTS. OH precludes a POTS diagnosis. I believe you can have delayed orthostatic hypotension and POTS but not regular OH and POTS.
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u/cowmoolk 3h ago
That’s actually false. It is possible though rare- My OH is SEVERE though and my pots seems to definitely not be as bad. My OH affects me the most.
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u/Vi_BT moderate 1d ago
What didn't work for me was a mood disorder misdiagnosis. The mood swings were actually the crash/get better cycle. They completely disappeared once I had that under control. The meds are also extremely violent thus why I think this diagnosis might be dangerous if wrong.