Treatments to Explore

[hapl808]

My current most difficult issues are probably a low PEM threshold from cognitive tasks (leading to brain fog, reflux, headaches, etc), and muscular and connective tissue weakness (inability to stand without crutches, injuries from any task that requires exertion, etc).

What RX medications would you recommend exploring? I've tried modafinil (bad crash), ketotifen (not much), cromolyn (not much), various H1 and H2 (some benefit from H1 but rebound, H2 not helpful), benzo (small help, but usually more fatigue for a day or two after), LDN (not much - maybe revisit), etc.

Anyone have suggestions of what medications to discuss with my physician? Antivirals, antifungals, metformin, rapamycin, stimulants, steroids, etc?

 

[wabi-sabi]

I hope someone has some good advice for you @hapl808. I'm afraid I don't have much. Have you tried other medications for OI? I've started taking xolair and that seems to be helping (finger crossed!), but it works for MCAS. If you don't have that I'm not sure it would help.

 

[Zebra]

Hi @hapl808

Maybe discuss Mestinon for muscle weakness?

I've been on Mestinon for years for muscle weakness, GI motility, and autonomic dysfunction.

In the beginning, I called it my "magic pill".

Eight years later it's far less magical, but if I have to withhold it for 24-48 hours for testing (which happens from time to time), I am usually *shocked* by how awful I feel. So, it kinda reminds me that even though my quality of life is pathetic, I am even less functional without Mestinon.

 

[heapsreal]

My current most difficult issues are probably a low PEM threshold from cognitive tasks (leading to brain fog, reflux, headaches, etc), and muscular and connective tissue weakness (inability to stand without crutches, injuries from any task that requires exertion, etc).

What RX medications would you recommend exploring? I've tried modafinil (bad crash), ketotifen (not much), cromolyn (not much), various H1 and H2 (some benefit from H1 but rebound, H2 not helpful), benzo (small help, but usually more fatigue for a day or two after), LDN (not much - maybe revisit), etc.

Anyone have suggestions of what medications to discuss with my physician? Antivirals, antifungals, metformin, rapamycin, stimulants, steroids, etc?

For symptom treatment of pem is really just to rest and get good sleep. Stimulants like modafinil or caffeine only use as needed no more than twice a week and low doses. Modafinil i found 50mg was enough. I don't drink tea, coffee or other sources of caffeine so when I use caffeine (in a pill), 100mg helps just as much as modafinil and it's equal to 1 cup of standard coffee. So I find intermittent use is the best way to use these. If used daily, I think that's when you can over do things and get pem or have a crash.
AlphaGPC is a supplement that can help with cognitive issues that's popular. Amino acids tyrosine can also help.
Some people stack certain things together like 100mg caffeine with tyrosine 2000mg, AlphaGPC 500mg, Carnitine at 500-2000mg. Probably best to add one thing at a time to judge their effectiveness and actual drugs like caffeine and modafinil not to stack together but supplements seem OK as they can act on different pathways.
Be careful of preworkouts as they can have similar products in them but have stupid high doses of caffeine like 400mg plus. Plus it's cheaper to buy ingredients separately, which helps you to judge them individually.

It's hard to avoid pem. I know in a big crash stimulant things just don't work, your body is telling you to rest.

You can try testing dhea and cortisol which are commonly low in cfsers, fixing these can also help.

 

[hapl808]

I think that's when you can over do things and get pem or have a crash.

Unfortunately, since even a single phone call or listening to music can crash me - it leads to a very limited and isolating existence.

If I do nothing at all, my chance of PEM is much lower - but it takes away every part of living that's enjoyable if I sit in a darkened room with my eyes closed.

 

[kushami]

@hapl808, do you live anywhere where you might be able to see an autonomic specialist who measures cerebral blood flow with a Doppler scan? That might open up some treatment options.

The places that offer it in an autonomic context are few. There’s about ten worldwide: a few in the US, one in Canada and one in the Netherlands. (Maybe also in Japan and South Korea, but could be limited to research.)