Extreme fluctuating symptoms

judyinthesky

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Hello!
I have this issue which makes treatment complicated.

I oscillate between being very physically tired, and a nervous system that is extremely wired.

Like one day I would have an easier time with sleeping, be physically super tired from anything or food, then the other day my nervous system wide awake.

My symptoms are also very psychiatric: usually after a long time of being wired, I get a sort of compensatory depression. Doesn't last more than 1-2 days usually and is independent from my thoughts. So unrelated to real depression!

It's like a bipolar nervous system sometimes, and every once in a while I get more tired physically than mentally.

I rarely have brain fog, just a too wired nervous system and brain. When I exceed my energy envelope, my nervous system wires up, apart from the occasional super tired two days.

I feel that even within ME this is so weird!!

Anyone?
I don't know where to start with medication because of fluctuations like this, so I take Xanax as needed.

X
 

xebex

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I’m very similar, I might not sleep for two or three nights in a row and still feel full of energy yet if I actually do anything for longer than 20mins I will crash and then get two days of severe depression ontop of all the other crashy stuff, like flufeeling, muscle aches, weakness, reduced stamina, pots like symptoms. I used to get brain fog a lot but now I have a pretty focussed mind unless Ive eaten something I shouldnt have, and then it feels like my Brain is folding in on itself. I also get rage attacks when I feel crash coming on.

honestly the only thing that’s helps for me is extreme pacing, I lie down all day except for doing necessary things like self care and cooking. I can go for a short walk a few times a week.

being careful with food helps

NAC helps clear my brain of toxic feeling and can helps little with depression

antihistamine helps a little bit can make me worse the day after taking it.

I did a gene sequencing and discovered I have COMT mutation which means high dopamine / low stress resilience so I believe that on top of the ME causes dopamine swings. I take SAMe and it does seem to balance me out a little but I’ll still get depression if I push too hard just seems less severe.

I ha e started looking into ablify but I think I may need a dopamine stabilizer instead. It’s a bit of a minefield and hard to figure out when we seem to swing to the extremes.
 

judyinthesky

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@xebex did the COMT test and am negative.
Before becoming ill have also been extremely stress resistant. Not anymore!
What dopamine stabiliser were you thinking of? SAMe?
 

xebex

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@xebex did the COMT test and am negative.
Before becoming ill have also been extremely stress-resistant. Not anymore!
What dopamine stabiliser were you thinking of? SAMe?
So if you are negative for COMT that makes you either val/met type (heterozygous) (balanced) or val/val type (homozygous) on the G allele - this essentially means you have naturally low dopamine and high-stress resilience (unlike me I have high dopamine and low-stress resilience), but if it does get out of balance even without the mutation can cause you issues.

I wonder if treating for COMT fast would help? SAMe is is suggested for people with the COMT slow (met/met) mutation so maybe that wouldn't work for you.

here's a link that might help

https://www.seekinghealth.com/collections/dirty-genes-comt-fast-support

the other thing to look at would be the other gene mutations on the seeking health site, do you know your other mutations?
 

Judee

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I find DMG calming without making that drowsy, overly tired feeling. I used to combine it with D-phenylalanine w/o issues. However, I would advise against trying TMG as I had the opposite effect on that. It made me feel very angry and aggressive.

But please do due diligence on researching it for yourself since we all get such wildly different reactions from each other.

***Not to mention that since you are on prescription medication you might want to clear everything with your doctor and/or pharmacist.***

At the time I was using it the most, I was only on thyroid medication, I believe.
 

xebex

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@Judee interesting, SAMe and TMG are similar, i find SAMe calming i wonder if i'd find the same with TMG.

yeah experimenting on ourselves certainly has risks. I try to make them well calculated.
 
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judyinthesky

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Hm, still having trouble understanding the SAM thing
I definitely think that things can get out of balance no matter the natural stress response

I measured dopamine in urine once and one time it was too high, then another time too low.

Doctors didn't think much of it and I also don't know what it all means. Some say those neurotransmitters urine tests don't show much.
 

xebex

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@judyinthesky SAMe raise methionine which helps break down the neurotransmitters so your dopamine doesn’t get too high, it sounds like you could be having similar swings to me in which case SAMe might be worth trying but of course everyone is different and it may not be helpful.
 

xebex

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Thanks! Is it a powder or nutrition?
It comes in a pill, it’s best to get the foil wrapped version as it degrades fast I have heard good things about Original SAMe brand I’m using Jarrow at the moment.

I wonder if stimulants might help you? I had some luck but then they pooped out as I mentioned in another post, it’s also a bit risky. But ultimately I didn’t see anything extreme about it, it just didn’t work properly for me.