Benfotiamine difficulties
Hello all, hope everyone is feeling well today. I started benfotiamine last September for CFS after a week of high dosing B Complex.
The B Complex had 100mgs of HCL Thiamine in each pill, I took 6 per day and had really incredible results. Felt a little better each day and by the 6th day was perfect. Looked up high dose b complex for CFS/ME and came across thiamine as the possible reason for feeling so well. I had paused taking the B Complex once I felt so much better because I didn’t know what I was doing and wanted to research a bit. Immediately went downhill and was right back where I started a day after stopping the B Complex.
Learned a bit about Benfotiamine so began taking 500mgs immediately, along with 100mgs of B2. Continued with the 300mgs or so of Magnesium glycinate and 100mgs of HCL Thiamine (from the bcomplex with other b’s included). Never felt as good on the Benfotiamine as the HCL, but did respond immediately and began feeling better right away.
I had to stop taking the benfo within a few months due to a strange headache. Severe pain at the base of my skull, like a gripping pain, and severe neck pain. Also experienced severe depression, so severe it made me nervous.
Now, 7 months or so since stopping benfo, that bad headache and neck pain returns if I take any b vitamins, no matter the dose, other than the liquid B12 I’ve been taking all along.
I tried taking amino acid complex but that headache and neck pain kicked in after the second day and stayed at least a week. I tried taking small amounts of benfo to see if I could tolerate it but the head/neck pain starts within hours and stays for days/a week or so.
Anyone maybe have any suggestions? My main issue is fatigue - exercise intolerance and PEM. Lots of other symptoms I suppose but would be so nice to be able to move around a bit more than I am. Not bedridden but unable to work and live normal life. I have recently started a low histamine diet and that seems to be helping the fatigue a bit. I know there are underlying reasons for histamine issues and plan to investigate, but that thiamine HCL helped me so incredibly, I’m hoping I can get back to it.
Again, hope everyone is well. Really appreciate any thoughts anyone may have. Thanks so much for your time!❤️