Getting easily startled

[kjetilv]

Thank you everyone for sharing your thoughts. Highly appreciated.

For the last five days I’ve taken 300mg of thiamine (HCl) and 500mg of potassium. The symptoms I mentioned above have actually decreased a little which is really great.

Trying to get my hands on allithiamine, but it’s not available in Norway at the moment - when ordering from abroad there’s pretty big fees and taxes. Might do it either way though…

 

[Vladimir]

I don't know if my (prior) situation is relevant to this thread but I am happy to share more about. I had an insane startle reflex for several years to minor every day things like the doorbell, the phone ringing, or another person's voice/movement (if I did not see them enter the room and did not know that they were there). It would trigger an adrenaline reaction that felt like a shock to the heart and it could last for 24 to 48 hours. I cannot even explain how severe it was at that time!

It turned out that I had very high autoantibodies called Anti GAD65 and when I did IVIG (for other issues) it completely eliminated the insane startle reflex and it never returned. Anti GAD65 autoantibodies attack the enzyme that converts GABA (calming) to Glutamate (excitatory/agitating) so this actually made sense. These autoantibodies often correlate to two medical issues that I do not have (diabetes and Stiff Person Syndrome) but they can also correlate with two issues that I do have (Dysautonomia & Hashimoto's).

Very interesting case. My experience and knowledge also tell me that the reason behind all those symptoms might be connected to GABA and Glutamate imbalance.

Could you share a bit more on the IVIG procedure you had? How many of those did you get, how long it was? Did you feel better after the first one etc.?

 

[Gingergrrl]

Could you share a bit more on the IVIG procedure you had? How many of those did you get, how long it was? Did you feel better after the first one etc.?

I wanted to clarify that I did not have the IVIG b/c of the anti-GAD65 autoantibodies (which cause the GABA/ Glutamate imbalance). I had IVIG to treat LEMS which caused me severe muscle weakness that was weakening my lungs and also to treat my POTS & MCAS. The fact that it ended up also helping reduce the anti GAD65 autoantibodies was an additional bonus

I had (high dose) IVIG for two full years for autoimmunity (everything that I mentioned above). I did not feel better after the first one b/c the infusion speed was WAY too high which caused severe headache & side effects. But in the upcoming months when the infusion speed was lower (and we split each infusion cycle into a 3-day split-dose, etc), then I started to have significant improvements from IVIG.