Bizarre random 1 day "remission"

[xebex]

@vision blue yes! Oxytocin! Wow! Ok lemme research that, I wonder if cervical stimulation causes oxytocin to be released!

I have gone down the path of looking at puppies and while momentarily helpful never did anything like what happened last week!

I have been interested in vagus nerve stimulation for a while but not really done anything about it.

all my attempts at dealing with orthostaic intolerance in standard ways have failed ie mestinon and/or adding salt - I’m sensitive to too much salt it gives me really bad vertigo! And the Mestinon experience was quite frightening!

ritalin was helpful for a while - blood vessel constriction - but I became tolerant of the dose and also intolerant of raising it. Sigh.

Ill be doing a trial soon of Pepcid and Claritin, all other antihistamines make me depressed haven’t tried Claritin yet. I do believe I also have some kind of “mild” MCAS.

hmm back to the oxytocin, I wonder if my doc will prescribe that! I have read about it helping people! also just thinking about it sex does NOT help me lol, you’d hope that would release enough oxytocin but apparently not!

one thing they did do is put iodine on the wound, I wonder if that has an effect???

 

[Judee]

How about a rush of endorphins?

I take d-phenylalanine which is suppose to suppress the enzyme that breaks down endorphins and even though it helps with my mood, it doesn't do anything for the ME/CFS, unfortunately. I have even tried the DL version which is suppose to help with energy.

 

[Judee]

all my attempts at dealing with orthostaic intolerance in standard ways have failed ie mestinon and/or adding salt - I’m sensitive to too much salt it gives me really bad vertigo! And the Mestinon experience was quite frightening!

ritalin was helpful for a while - blood vessel constriction - but I became tolerant of the dose and also intolerant of raising it. Sigh.

Have you tried Huperzine A? I think it helps me with OI. It definitely works as a constrictor because even my pupils get smaller.

one thing they did do is put iodine on the wound, I wonder if that has an effect???

Have you tried iodine again to see if that was it? I've read of some doctors using the rub on kind to test for iodine deficiencies.

 

[xebex]

@Judee - i did look into huperzine A, I'll revisit it. And yes I will read up about the iodine, I've read somewhere you rub it on your skin to see if deficient. _ don't have a goiter though which is the main symptom of a deficiency, my fatigue is also only related to physical activity, if I do nothing all day I am not tired (I'm lucky that most of the time reading doesn't cause problems unless already in a crash), I'm assuming an iodine deficiency would cause constant fatigue.

 

[lenora]

Or, how about adrenaline? It would most likely be a surge of that in both instances (cervical and falls). I find it gets me through many things, especially when people visit and chat (which I enjoy), but I couldn't do it without surges of adrenaline.

And then I'm back at square 1 again, but a period of quiet and rest will help me feel better. Yours, Lenora.

 

[xebex]

Or, how about adrenaline? It would most likely be a surge of that in both instances (cervical and falls). I find it gets me through many things, especially when people visit and chat (which I enjoy), but I couldn't do it without surges of adrenaline.

And then I'm back at square 1 again, but a period of quiet and rest will help me feel better. Yours, Lenora.

yes could be adrenaline, except usually an adrenaline surge makes me feel jittery and hyper - over energised if you like, and results in a crash, this experience I felt calm and completely normal and didn't crash, until I gently went back to baseline 2 days later and that crash was a normal crash rather than a bad crash as you'd expect if you'd been over doing it for 3 days.

 

[Reading_Steiner]

I can relate to your experience to some degree, but I never had a sustained period of remission like some users report. It seems to last at most 30 minutes when I experience something similar, which is rarely. It has happened this year. Simple way to describe is I feel light and springy like a massive weight has been lifted off. General sensation that I constantly feel all the time is a bit like being underneath a heavy trawling net and dragging it around when I move, and a sense of physical unsteadyness similar to being drunk, but with a sober mind and senses. I have no clue what caused these experiences but I speculate maybe I consumed something that modified the metabolism or amplified the process of clearing toxic byproducts, what we are now calling excessive nitrogen compounds.

 

[xebex]

@Reading_Steiner yes that feeling of lightness is how id describe it!

 

[Booble]

So last week on Wednesday 21st April 2021 I had a bizarre 1 day remission. I don't know if it was full remission because I didn't do any strenuous activity but my step count went from an average of about 2000 per day to 6000.

On a day where I feel particularly good I might get up to 3000 steps but I will most likely crash if I go over 2500 steps.

Anyway this day I just felt different, I just felt like I could do all the things. I decided to walk to the grocery store and back - I haven't done this in about 2 years. I cooked easily and I took two other short walks near my home. I felt happy, and at ease, no symptoms and just a complete and utter sense, of "if I do this thing I will be fine". I had no crash at the end of the day and on Thursday I just felt a little tired, Friday I was back to my normal self and crashed after trying to do 3000 steps.

Interestingly i had a similar experience 6 months ago. I put it down to taking some Benadryl, but the next day i felt awful and i couldn't replicate the experience by taking more Benadryl.

This time round i had just started Lions mane, i'd been taking it for 4 days and had been feeling a bit more energetic those first few days before the remission.

The REALLY interesting thing though was that on both occasions the day before this "remission" I had been to the hospital for a cervical biopsy.

So what on earth? if it wasn't the lions mane or the benadryl (which i haven't been able to replicate) was my nervous system and/or immune system suddenly kick-started into action by the physical trauma of the biopsy? woahh!

Would love some thoughts and ideas on this or to hear similar stories if you have any?

I haven't ready anyone else's response yet but here are my thoughts and related experiences:

Going to the hospital the previous day had you in a nice clean sterile environment for a significant period of time. I have found the same thing in the past. Boy it feels good. Who knew that a really clean, fresh aired, controlled environment could feel SO good.

The other thing I'd suggest would be weather conditions. I can suddenly feel light as a balloon when walking on the few days when the air pressure is just right. It's not very often but the difference is very noticeable. Normally I feel like gravity is 10x dragging me down. On the rare perfect days, I feel...well....normal!

EDITING TO ADD: Sudafed. The old fashioned little red pills kind of Sudafed. Does the same wonderful thing.

I hope you enjoyed your little vacation from CFS/ME!

 

[Booble]

@Reading_Steiner yes that feeling of lightness is how id describe it!

Wow, I hadn't read the other posts before posting mine but we used the same kind of language of "lightness." Fascinating.

 

[xebex]

EDITING TO ADD: Sudafed. The old fashioned little red pills kind of Sudafed. Does the same wonderful thing.

I hope you enjoyed your little vacation from CFS/ME!

thank you, yes it was a great day. I have had some similar experiences when taking sudafed but not quite the same , sadly the day after taking Sudafed Im always in a depressed mess so I can’t take it, I think I also build tolerance very quickly ritalin was also helpful ina similar way but again not as good as this drug free experience”

interestingly I do find hospital environments calming even though I was getting an invasive procedure done.
Maybe I should camp outside this summer, atleast until the bloody forest fires start up again.

 

[Booble]

thank you, yes it was a great day. I have had some similar experiences when taking sudafed but not quite the same , sadly the day after taking Sudafed Im always in a depressed mess so I can’t take it, I think I also build tolerance very quickly ritalin was also helpful ina similar way but again not as good as this drug free experience”

interestingly I do find hospital environments calming even though I was getting an invasive procedure done.
Maybe I should camp outside this summer, atleast until the bloody forest fires start up again.

The fact that both the clean environment of hospital and Benadryl make you feel better (me too) points to allergens and environmental triggers. I also feel better staying in super clean hotels with very good AC filtering systems.

 

[xebex]

Problem is the Benadryl only once made me feel better have never been able to replicate it it just makes me sleepy and depressed instead.

 

[Booble]

Problem is the Benadryl only once made me feel better have never been able to replicate it it just makes me sleepy and depressed instead.

Same here.
But I still think it points the allergen aspect.
I'd put money on your hospital trip cleanliness making you feel better for your 1 day remission.