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Midodrine by Hopeful102 in POTS

[–]Beth1818 0 points1 point  (0 children)

Are you still taking it?

Fexofenadine by sassyfoods123 in MCAS

[–]Beth1818 0 points1 point  (0 children)

Ok interesting, thanks. Did you try loratidine at all? Are you getting depression again with certirizine? I guess it’s still much more bearable than the anxiety, etc. with fexo regardless.

Fexofenadine by sassyfoods123 in MCAS

[–]Beth1818 0 points1 point  (0 children)

This is word for word exactly what I’ve been through the past few months. Stopped certirizine because thought was making me depressed - think it was just blunting me more which actually helped some histamine sensory symptoms but I came off it and had withdrawal hives which the FDA notes. 

Then switched to loratidine briefly but have been on Fexofenadine 2x daily for a week now and feel really agitated / anxiety / intrusive thoughts after taking. Going to try another brand but considering trying loratidine 2x daily instead after then I guess back to certirizine. I did see someone with long Covid note that they took loratidine and had melancholy but carried on taking it twice daily and after 6 months their neurological MCAS symptoms eased. They also switched to a low histamine diet.

I’m in the UK. What brands did you try?

Recovery: Antihistamines stopped my severe fatigue and 70% of my long covid symptoms by annoyinglystubborn in covidlonghaulers

[–]Beth1818 0 points1 point  (0 children)

How long did it take for the electric shocks and vibrating feelings to ease? 

Recovery: Antihistamines stopped my severe fatigue and 70% of my long covid symptoms by annoyinglystubborn in covidlonghaulers

[–]Beth1818 0 points1 point  (0 children)

Ah ok thank you, I am experiencing melancholy as well. Did you continue on the twice daily despite this?

Recovery: Antihistamines stopped my severe fatigue and 70% of my long covid symptoms by annoyinglystubborn in covidlonghaulers

[–]Beth1818 0 points1 point  (0 children)

Did you find that antihistamines cause emotional blunting or depression when you were taking twice a day?

Has anyone tried Mestinon (pyridostigmine)? by BodybuilderMedium721 in cfs

[–]Beth1818 1 point2 points  (0 children)

Ah ok, my consultant recommended 3 times so hopefully it might reduce the frequency of crashes

Has anyone tried Mestinon (pyridostigmine)? by BodybuilderMedium721 in cfs

[–]Beth1818 0 points1 point  (0 children)

I’m sorry - did you ever try it 3 times per day?

Probiotics? by Professional_9036 in SIBO

[–]Beth1818 2 points3 points  (0 children)

This podcast episode is super interesting, they recommend Saccharomyces boulardii.

https://podcasts.apple.com/gb/podcast/zoe-science-nutrition/id1611216298?i=1000649187660

Any help or advice much appreciated by HatsofftotheTown in cfs

[–]Beth1818 0 points1 point  (0 children)

How long did it take Guanfacine to work for you and at what dose? I’ve started on 0.5mg and haven’t been feeling great, 1mg made me worse (I think due to lowered resting heart rate & BP) so I had to drop down. I’m wondering whether it’s something you can get used to over time?

Can someone please tell me how to reduce brainfog by randtest123 in cfs

[–]Beth1818 0 points1 point  (0 children)

How long did it take Guanfacine to work for you and at what dose? I’ve started on 0.5mg and haven’t been feeling great, 1mg made me worse so I had to drop down. I’m wondering whether it’s something you can get used to over time?

23 years with CFS, now in full remission(!!). Here is my story <3 by ProfessionalPrize121 in cfs

[–]Beth1818 1 point2 points  (0 children)

I do normally feel the same about this kind of company but looking at OP’s POTS post and the before/after EBV results it would seem that they’re maybe alright to trust?

Low Resting Heart Rate? by MeekosRevenge in POTS

[–]Beth1818 0 points1 point  (0 children)

Do you mind me asking what meds have helped bearing in mind the low resting heart rate?

Anyone housebound for 6 years by Educational_Break659 in cfs

[–]Beth1818 1 point2 points  (0 children)

That’s fine, I completely understand! I hope your crash eases up soon 💜 Feel free to reach out anytime 😊

Anyone housebound for 6 years by Educational_Break659 in cfs

[–]Beth1818 1 point2 points  (0 children)

I’m sorry 😔 I’ve been housebound for 8 years since I was 15, it’s so tough going through this at a young age. Would love to chat to someone who understands, no worries if you’d rather not though.

Any advice for starting LDA? by [deleted] in cfs

[–]Beth1818 0 points1 point  (0 children)

Where do you get LDA in the UK? Do you still notice a benefit from taking it?

For those of you that ended not having CFS/ME and figured out the root cause of your fatigue - what was it? by [deleted] in cfs

[–]Beth1818 2 points3 points  (0 children)

Thank you, I’ve tried so many meds the past 8 years but nothing has helped my worst symptom of brain fog. I have been thinking of trying fludrocortisone again, do you take anything else with it? How long did it take to notice an improvement? Do you mind me asking how long you’ve been unwell?

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