Odd reactions to stimulants post-illness

[frozenborderline]

I know that cannabis can be invaluable for certain conditions like seizure disorders, or for coping with chemo side effects, but I think it is generally not as good for you as its hyped up to be. It seems more psychotomimetic than classical psychedelics, for one. It decreases REM sleep. It is an endocrine dysruptor. When I tried it earlier in my illness for sleep, it caused more problems than it solved.

 

[frozenborderline]

I didn't say it was purely neurological problem, I said it was a combination of neurologic problem with hypothyroidism. I also have an impairment of fatty acid metabolism on organic acids test which probably contributes to the problem (lactic acidosis, fasting intolerance, easy muscle fatiguability). But the other two issues are congenital and something that I've managed to live with - the neurologic aspect is what's pulled the trigger.

I've had it all - grossly abnormal exercise test, loss of balance, PEM, severe lactic acidosis, muscle atrophy, POTS, sore throats, flu-like malaise/high cytokines, all sorts of weird aches and pains - it's easy to lose the importance of the neurologic aspect underneath of that. Once I corrected the hypothyroid aspect of the disease, the neurologic aspect became a lot more defined and obvious.

I guess what I'm saying is that in my case, the metabolic (I say this because I'm still not sure it's hypothyroidism) aspect hasn't been corrected even nearly enough to start worrying about the mood/neurological aspects that may arise. Or maybe worry about them a little, but I'm also still dealing with the lactic acidosis or severe fatigue and pain that characterizes that.

 

[Iritu1021]

As someone who found a successful treatment approach, I feel morally obligated to tell other people about my experience and conclusions that unfolded during my recovery but ultimately it's their choice whether to accept or reject them.

I've been busy working on my blog, and if you ever decide to revisit the subject, you can read my recent articles that explain the neuroscience connection to physical and metabolic manifestations as I understand them (I subscribe to Jay Goldstein's "limbic system dysfunction" hypothesis" - in fact, if I could I would rename my disease to "Limbic Autonomic Dysfunction Syndrome" or LADS). That part of the brain literally controls every cell in the body.

I sincerely wish you the best of luck, and I hope that you find an approach that you believe in and that works for you.

 

[frozenborderline]

As someone who found a successful treatment approach, I feel morally obligated to tell other people about my experience and conclusions that unfolded during my recovery but ultimately it's their choice whether to accept or reject them.

I've been busy working on my blog, and if you ever decide to revisit the subject, you can read my recent articles that explain the neuroscience connection to physical manifestations as I understand them (I subscribe to Jay Goldstein's "limbic system dysfunction" hypothesis" - in fact, if I could I would rename my disease to "Limbic Autonomic Dysfunction Syndrome").

I sincerely wish you the best of luck, and I hope that you find an approach that you believe in and that works for you.

Well I'm in the process of trying things you recommended, and testing these ideas. I just have been having a hard time tolerating T4, but I just got my compounded low dose T3 and plan on starting the blanchard method.

I certainly don't think it's as simple as accepting vs rejecting wholesale all parts of a certain theory, and I was specifically saying that I think even if there are big overlaps between CFS and mood disorders, that I don't think they're exactly the same thign

 

[Iritu1021]

Well I'm in the process of trying things you recommended, and testing these ideas. I just have been having a hard time tolerating T4, but I just got my compounded low dose T3 and plan on starting the blanchard method.

I certainly don't think it's as simple as accepting vs rejecting wholesale all parts of a certain theory, and I was specifically saying that I think even if there are big overlaps between CFS and mood disorders, that I don't think they're exactly the same thign

Agree, that's why I said we need a new name that's not based on the mood but on the autonomic dysfunction.

 

[frozenborderline]

Agree, that's why I said we need a new name that's not based on the mood but on the autonomic dysfunction.

I do think that the central symptom and mystery of CFS is the exercise intolerance/post exertional malaise. Exercise might not help much in major depressive disorder, or bipolar, but it can help, and it doesn't tend to make things worse or lead to a dangerous decline; whereas it does in CFS. That's why I liked the name SEID even though it's kind of a mouthful.

That said, could exercise make one worse in other conditions? It's probably possible and is one of these things that the science of stress needs to focus on. I think the "exercise is a panacea" idea is this mutant Protestant-capitalist masochism in our society. Physicians used to prescribe bedrest for many illnesses

 

[Iritu1021]

I do think that the central symptom and mystery of CFS is the exercise intolerance/post exertional malaise. Exercise might not help much in major depressive disorder, or bipolar, but it can help, and it doesn't tend to make things worse or lead to a dangerous decline; whereas it does in CFS. That's why I liked the name SEID even though it's kind of a mouthful.

That reminds me of this article I just read a few days ago "Survival of the Sluggish". I suspect the "dauer state" in CFS is a protective mechanism to force the body to slow down and give it a chance to repair itself.

I've read that exercise can be a trigger for manic switch in bipolar. I do not think it's considered helpful and have not really seen it recommended in any legitimate sources. Bipolar depression is typically apathetic, anergic "wanna stay in bed, eat and sleep" type of depression while unipolar melancholy depression might present with increased levels of energy and activity due to high cortisol.

 

[frozenborderline]

That reminds me of this article I just read a few days ago "Survival of the Sluggish". I suspect the "dauer state" in CFS is a protective mechanism to force the body to slow down and give it a chance to repair itself rather than the problem itself.

I've read that exercise can be a trigger for manic switch in bipolar. I do not think it's considered helpful and have not really seen it recommended in any legitimate sources. Bipolar depression is very much apathetic, anergic "gotta stay in bed, eat and sleep" type of depression while unipolar melancholy depression might even present with increased levels of energy due to high cortisol.

Yeah, and this is why some people are worried about turning off this switch and going back to a normal metabolism, without necessarily knowing the details of what caused it. Also, some people on other forums say that with thyroid treatment, they have gone from CFS to a more hyper "metabolic syndrome" state, which I want to avoid. But Naviaux says the CDR is more like metabolic syndrome, and CFS is more like the opposite of that.

Then Phair's idea of a "bisteady state" is also intriguing.
I read up on Dauer, and it made me think about how adaptations can be maladaptive. Because it clearly helps these worms live longer in the absence of nutrients, yet in a higher organism with the capacity for reflection, its effects on quality of life are so awful that people kill themselves.

 

[Iritu1021]

Have you had your thyroid labs checked recently? Would be interesting to see if your TSH goes up from micro-dose T3 like mine did.

 

[frozenborderline]

Have you had your thyroid labs checked recently? Would be interesting to see if your TSH goes up from micro-dose T3 like mine did.

Well I didn't even get a baseline thyroid panel right before I started my (non micro dose ) thyroid trial. so I'm guessing anything could happen . I do need to make sure I get ft3 next time, after i've done the blanchard method for a little while. right now I'm all over the place and am just trying to get through day to day treating symtpoms

I think thyroid can also lower cholesterol if you have it too low to start, so I'm concerned about that a little bit

 

[frozenborderline]

The other thing about talking about mood disorders, etc., is that I think it's all complicated by the emotional aspect of being sick, i.e. the grief in dealing with losing a good portion of your life to illness. Most of the time that I've been sick, or a good deal of it, I have been too much in day-to-day pain or discomfort to think about my life, and think beyond it.

Most of the time I compartmentalize emotions or the mental part of being sick, and just try and remain emotionally numb, because dealing with emotions while this sick would be too exhausting.

A couple of times that I've managed to treat that pain and fatigue a little bit and achieve moderate relief and lucidity, and each time that happens, I end up feeling heavy grief and dread that I'm as old as I am and have been sick for so long, it's like waking from a bad dream into a slightly less bad, still surreal dream.

 

[Iritu1021]

The other thing about talking about mood disorders, etc., is that I think it's all complicated by the emotional aspect of being sick, i.e. the grief in dealing with losing a good portion of your life to illness. Most of the time that I've been sick, or a good deal of it, I have been too much in day-to-day pain or discomfort to think about my life, and think beyond it.

Most of the time I compartmentalize emotions or the mental part of being sick, and just try and remain emotionally numb, because dealing with emotions while this sick would be too exhausting.

A couple of times that I've managed to treat that pain and fatigue a little bit and achieve moderate relief and lucidity, and each time that happens, I end up feeling heavy grief and dread that I'm as old as I am and have been sick for so long, it's like waking from a bad dream into a slightly less bad, still surreal dream.

I totally understand what you mean but how exactly do you "try" to be emotionally numb? I don't think we have that much voluntary control over our emotions. To me, the emotional numbness is a result of limbic dysfunction when there's a complete disconnect between the limbic system and frontal lobes and resulting loss of the ability for emotional processing.

The extreme feeling of sadness (or grief) is actually a big step up from emotional numbness - the limbic system is now like a printer that was jammed and has a long queue of unprocessed feelings that come rushing in.

People with severe depression often complain how bad they wish they were able to cry or just feel anything -even negative emotions. The popular Pixar movie Inside Out actually was built on that concept - on how sadness is part of the healing process for depression (and depression was depicted as a state of emotional numbness).

The next stage of depression after emotional numbness is depersonalization and derealization - which is the worst kind of hell that I hope you never get to experience.

 

[frozenborderline]

I totally understand what you mean but how exactly do you "try" to be emotionally numb? I don't think we have that much voluntary control over our emotions. To me, the emotional numbness is a result of limbic dysfunction when there's a complete disconnect between the limbic system and frontal lobes and resulting loss of the ability for emotional processing.

The extreme feeling of sadness (or grief) is actually a big step up from emotional numbness - the limbic system is now like a printer that was jammed and has a long queue of unprocessed feelings that come rushing in.

People with severe depression often complain how bad they wish they were able to cry or just feel anything -even negative emotions. The popular Pixar movie Inside Out actually was built on that concept - on how sadness is part of the healing process for depression (and depression was depicted as a state of emotional numbness).

The next stage of depression after emotional numbness is depersonalization and derealization - which is the worst kind of hell that I hope you never get to experience.

I'm sorry but I disagree. people don't have total control over their emotions but they have some agency in changing how they feel. This is the only reason meditation works at all. Anyway, I typically try to be emotionally numb, because dealing with intense grief while this tired would wear me out I think. So I just kind of steer my thoughts away from things that start a tinge of sadness, and kind of do this visualization of impassivity, where when sadness approaches I just "play dead" sort of.

To say that people have total agency over all their thoughts and emotions would be incorrect and problematic, because it would mean blaming people who become sad or depressed. But I'm not saying that--I'm just saying one always has a level of agency. Sometimes it increases or decreases according to mental and physical conditions.

 

[frozenborderline]

To be clear, I have the ability for emotional processing, but crying/experiencing grief would wear me out too much at this point and I haven't seen that bear fruit so I consider it kind of useless and actively try and shut it down.

 

[Iritu1021]

To be clear, I have the ability for emotional processing, but crying/experiencing grief would wear me out too much at this point and I haven't seen that bear fruit so I consider it kind of useless and actively try and shut it down.

Ok, then next time you begin to feel better, just apply the same method and your problem will be solved.

 

[frozenborderline]

Ok, then next time you begin to feel better, just apply the same method and your problem will be solved.

The thing is, the times I felt better (and felt some grief/emotional openness), I was somewhat fine with feeling grief because I had more physical energy to deal with it and also had hope of getting better (because I was experiencing relief/improvment). So I didn't consider it necessary to shut down emotionally. Whereas the day-to-day when I am very tired, I do find it necessary.

 

[Iritu1021]

The thing is, the times I felt better (and felt some grief/emotional openness), I was somewhat fine with feeling grief because I had more physical energy to deal with it and also had hope of getting better (because I was experiencing relief/improvment). So I didn't consider it necessary to shut down emotionally. Whereas the day-to-day when I am very tired, I do find it necessary.

Next time just try to shut it down as an experiment and see if it works.

 

[frozenborderline]

Next time just try to shut it down as an experiment and see if it works.

Sure, I'll try it. But first I need to experience some improvement

 

[Iritu1021]

Next time just try to shut it down as an experiment and see if it works.

Sure, I'll try it. But first I need to experience some improvement

You will!

 

[Jackb23]

Just out of mere curiosity did anyone else an here also have an adhd diagnoses before coming down with this illness? Wondering if there are preexisting conditions that may distinguish those that will now have a bad reaction. I know @debored13 you mentioned you use to take stimulants before this illness so I though you might of had that diagnoses as well.