Things to try next

Mrparadise

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Dear PR-members

I have some things which I want to try out in order to get a bit better (even if I am rather mild to moderate already).

Antivirals
Betablockers
Sleep meds (AD's, benzos or antipsychotics
Cortisone
LDN
Etilefrine
Lamotrigine (maybe even venlafaxine as some people stated that it is beneficial for POTS/OI)
Stimulants for ADHD (I have ADHD)
Water fasting for 48 hours
Correcting my deviated septum (pretty strong deviation)

Do you have any suggestions what to try first, and what could be the most beneficial of those?
 
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I have some things which I want to try out in order to get a bit better (even if I am rather mild to moderate already).
Almost half the things on your list could make you infinitely worse, in the begging-to-go-back-to-where-I-was-before-here's-my-right-arm-in-downpayment kind of way.

LDN has helped several members here.

Lamotrigine has horrible side-effects for more than a few patients, and worse, some of them can be permanent:

  • loss of balance or coordination.
  • double vision.
  • blurred vision.
  • uncontrollable movements of the eyes.
  • difficulty thinking or concentrating.
  • difficulty speaking.
  • headache.
  • drowsiness.
Sleep meds, beta blockers, Ritalin-type ADHD stimulants, anti-d's, anti-psychs, and benzos are huge loaded guns. Approach with deepest, deepest caution, respect, and extensive research....

There's no easy, take-a-pill-feel-better-for-life answers to this illness. It's just a slow, steady slog and the avoidance of things that could make it much, much worse ....


With ADHD and ME, you have quite a nasty load, but proceed with caution, and take everything you read or hear with a grain of salt and a lot of research, yes?

Wishing you luck and good hunting :thumbsup::thumbsup::thumbsup: ....
 

Wishful

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There's no easy, take-a-pill-feel-better-for-life answers to this illness.
I second that. It is possible to find something that works well for you, but it's just as likely to be something that's not on a list for 'things that might work for ME'. LDN was on that list, and it did work for me, but only for blocking neuropathic pain, not any other ME symptom. The other three things that worked well for me were not on anyone else's list. My experience is that the expensive/dangerous drugs are no more likely to help than cheap/safe edibles from the grocery store, so you might as well try the cheap/safe ones first.

If you make a list based on what some theories suggest might help, first ask the question: "How likely is this theory to be correct, when no one has been able to really prove any theory for ME?". I can't offhand think of any theory for ME that has been clinically proven for a large number of PWME.

If you need treatments for comorbid conditions, that's different, and you might find help from forums for those conditions, and maybe ask here whether other PWME have had unusual side-effects from those treatments.
 

xebex

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I agree with the other comments and absolutely stay away from benzodiazepines especially if you are mild/moderate it can just open up a world of hell.

I had some small luck with ritalin but it pooped out fairly quickly. Wellbutrin also seemed helpful for the 3 days I took it but gave me terrible tinnitus that took 3 months to go away.

Basically every drug I have tried has made me feel worse or stopped working. But here are some that some people find helpful. Modafinil (made me feel super weird the day after), Mestinon (was horrific but some have had a lot of help with it).

So I have decided to go down the non drug route.

I would look into heart rate variability tracking and pacing.

Sugar free/ processed food free/ low(ish) histamine diet seems to be helpful for many - it’s a total pain but over time my tolerance to these foods seems to have increased. (And I’m not outrageously strict)

NAC seems to be helpful for me for toxic feeling.

I am just starting B3 niacin ( the flushing type) and so far this last week taking it has been a bit better I seem to have less muscle fatigue and better circulation.

I had an amazing few days taking lions mane but it seems to have pooped out aswell.

Magnesium glycinate seems to be helpful for many but no luck with it for me. I take mag malate for restless legs.

Theanine and EFT have been great for secondary anxiety.
 
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@Mrparadise
My experience is that the expensive/dangerous drugs are no more likely to help than cheap/safe edibles from the grocery store, so you might as well try the cheap/safe ones first.
Oh wow !!! We totally, totally agree.


And we're not the only ones who share this view:

Let your food be your medicine, and your medicine be your food -- Hippocrates
Add to that the judicious and carefully researched and trialed world of supplements, from vits and minerals to herbs and prebiotics (not a big believer in probiotics, the gut, or enteric nervous system, is as delicately balanced and elegant piece of machinery as the human brain and not to be tampered with too casually).

Before I get caught in a crossfire of angry denials, I'm not saying that the more dicey and dangerous world of psychopharma has no place in finding a way out of this miserable, twisty murderous little labyrinth of an illness, but there's no harm or fault, as @Wishful pointed out above, in trying other avenues, safer ones, safer ones that others have had success of one degree or another with, first.
I can't offhand think of any theory for ME that has been clinically proven for a large number of PWME.
And there @Wishful has hit the nail on the head yet again. There is absolutely not ONE hypothesis or potential treatment protocol for this illness that works for everyone, or even most. Or in some cases, even a few.


It's a maddeningly idiosyncratic, vicious little bastard of an illness and not to be toyed with ...

We're all our own lab rats and Petrie dishes, stumbling around in pain and exhaustion and fear in what, on our bad days, appears to be an endless dark night.

On our good days, we find, either by accident, design, or deep research, something that makes things a little better. Take the 10% or the 15% or whatever and keep building on it.

Don't do anything to make this worse, yes????
 
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@Mrparadise
Sugar free/ processed food free/ low(ish) histamine diet seems to be helpful for many - it’s a total pain but over time my tolerance to these foods seems to have increased. (And I’m not outrageously strict)
I wound up tossing all the supplements and herbs I'd relied on almsot all y adult life, and every food that I normally ate, eliminating everything from most sugar, all caffeine, alcohol, chocolate, baked goods, pizza, red meat, to, like @xebex, every other food stuff you can think of. I wound up living on mozzarella string cheese (low histamine, low glutamate, high protein), rice cakes with a small amount of Greek yohgurt, and a whole lotta water, what fun !!

But the dietary restrictions kept both myself and @xebex alive long enough to find other stuff that helped, and allowed us to gradually return, in slow careful steps, to a more normal diet and supportive supplement profile ...
NAC seems to be helpful for me for toxic feeling.
And proving the not everything helps everyone NAC kicked my butt really hard, then rolled me to the curb, than kicked me again, then laughed loudly and wandered off to find another victim.... haven't had the courage to try it again yet....
I am just starting B3 niacin (
Another one that did me in, tho in fairness, so did every other B vitamin .... ust started adding them back very carefully in teensy little wimpy doses, ad so far, doing well ...
Magnesium glycinate seems to be helpful for many but no luck with it for me. I take mag malate for restless legs.
And again, no other form of magnesium helped me, but magnesium glycinate saved my life, once I figured out a special dosing amount and schedule.


See? It's the "nothing works the same for all of us" thing again ....
Theanine and EFT have been great for secondary anxiety.
Theanine made me suicidal, but then so did all the nerve and sleep herbs, like valerian, hops, passion flower, etc etc etc.... also all the peppy herbs ..... so no help on either end of that spectrum ....


It wasn't fun, and I hope to nevr, never flucking NEVER be there again, but I learned a lot, endured a lot, and on my better days, can take a very very small measure of pride in having survived that. It was 5 years of screaming, bed-bound hell ....

It's a crap shoot, but kind of an interesting ride, once you learn the nature of the horse.

Hang in .... keep browsing these threads, keep researching, keep learning, keep proposing things for feedback, just .... keep on keepin' on :woot::woot::woot: :thumbsup::thumbsup:....