Do benzos work in these cases? To restore some GABA and calm the heck down?
I have found that Klonipin and Magnesium both help (have tried them both separately and both are beneficial in and of themselves but I think the combination is ideal). I am certain now that having the anti GAD65 antibody, my body is not converting glutamate to GABA and this is behind the startle response. I spoke with a friend who explained to me how this response can mimic a magnesium deficiency even though it is a different process. I am also investigating a supplement that may be helpful.
I see my Neuro tomorrow and am actually truly concerned that I might be developing SPS (Stiff Person Syndrome) from this antibody (GAD65). Last night my dog barked twice (not at door, just randomly) and I had an episode that I can truly label as dystonia in which my entire leg was violently shaking and it was so painful. My husband and I were both trying to hold my leg down but it would not stop. I have never experienced anything like it and the pain brought me to tears. Plus the feeling as if I had been shot with Epi and the muscle twitching. But the scariest part was my throat muscles locking up so I could not swallow.
It's so ironic b/c my MCAS is better and I can eat food again and I have no issues swallowing food (my throat is not weak) but in the startle reflex, my throat is now freezing up. I am so glad that I will see my Neuro tomorrow to hear what she makes of all this.
And lastly, an article on how to train you dog into being calm when the door bell goes.
I think my dog is a lost cause and is almost 11 years old. Today is my b-day and my mom asked what I wanted and I said that all I wanted was for her to take my dog and babysit her for a few days so I can have a break from this. She loves my dog and has babysat her since she was a puppy so was happy to come get her. Ironically, she had bought me a b-day card that when you open it up, it is dogs singing, "Happy b-day" and she felt so bad for buying it but she didn't know! But since I was warned before opening it, it did not startle me (but I will not be opening it again)!
And other things besides my dog trigger the response, too, but right now she is the worst offender b/c she can be asleep under a blanket and then just do this sudden bark out of the blue b/c she heard a noise in the hallway. I think she is a lost cause.
, you already know you have antibodies to GAD65 and N-type calcium channels. These alone would be enough to shift your "startle response".
I realized from my research and talking to several smart friends that I am just about certain that I have a (rare and yet to be named) autoimmune disease(s) b/c of all of these antibodies vs. ME/CFS. I have way too much glutamate and not enough GABA (from the one antibody) and then muscle weakness and breathing issues from the other. If I could find a way to control these antibodies (increasing IVIG, maybe trying RTX, klonipin, magnesium, who knows what else maybe could help it)? I will literally do anything to stop this startle reflex and the dystonia and muscle issues. I am really desperate and really sick of all of this.
I suspect we still haven't reached the end of the list of problems,
I agree. I did a blood draw yesterday to get nine autoantibody tests through Cell Trend Labs in Germany and just tracked my Fedex package and it cleared customs in Cologne and will arrive at Cell Trend tomorrow.
This will test nine other autoantibodies (anti-cholinergic, anti-muscarinic, and beta-adrenergic) and my main doc is very interested in my results. Plus will show them to the Neuro.
If it turns out that I have stiff person syndrome (SPS) or some other rare thing, I am now prepared to travel (even by plane) to an expert who is familiar with these autoantibodies. I have not yet spent any of my life savings on this disease but if there is someone who can help me, I am prepared to spend it all.
It's shocking to me that the experts on ion channelopathies are not in the US and that these tests only available in Germany. It seems like there must be someone in the US who deals with this stuff but I cannot find them!