Is it just a startle or do you feel sort of like a jolt go through your body? I've had this in the past and it's called myoclonus jerk/seizures.
To call it a "Startle" is like calling lighting a match an atomic bomb but I just don't know a better word for it! My dog barks every time someone comes through the door, uses the vacuum, etc. She is almost 11 yrs old and I don't think this will change. Other things startle me, too, but she is the worst b/c her bark is so high pitched and jarring.
It is purely the act of being startled and if someone came in and gave me really bad news, I would not have this reaction. It's purely physiological or autonomic vs. any cognition to it b/c it is instant. It feels like a shot of Epi to the heart and my body starts shaking and muscles spasming with severe pain. It can take hours to recover and once took me a full 48 hours. It is not a seizure but it is becoming incredibly annoying.
For me its related to too many reactions and their effect on the autonomic nervous system. They only happen when trying to fall asleep or sleep.
It has never happened when I am trying to fall asleep but it recently keeps waking me up from sleep. My very first symptom in 2013 was very high tachycardia waking me from sleep (in the 160's and 170's) and now it is this severe muscle cramping and pain waking me from sleep.
Some of your symptoms do seem like dystonia.
Thanks and I truly was not sure. I plan to ask my Neuro who I see in 1-2 wks.
I got mostly arrhythmias and some tachycardia and chest pain. The arrhythmias are the scary ones.
I've never had an arrhythmia where my heart has left sinus rhythm but I get tachycardia and chest pain.
Its too expensive for me to do all meds without fillers especially if I was to end up on a lot of medications. There's no assistance with compounding expenses at all in Australia, none of it is covered by any kind of subsidy or insurance.
I actually do not compound all of my meds, only two of them- the Ketotefin and Atarax. The Ketotefin is b/c this is the only option in the US and the Atarax to have a pure version with no bad fillers or dyes. But for all of my other meds, I have been able to find at least one generic that is dye free by researching the "inactive ingredients" on a website called "Daily Med". So all of them are covered by my insurance except for the two compounded ones which I just pay for privately b/c they are worth it for me.
Did you have abnormal immunogobulin tests before getting access to IVIG?
I was slightly low in IgG subclass three on two tests but in my case, I am trying IVIG as an autoimmune treatment vs. for immune deficiency. Ironically the dose that I have tolerated thus far is actually the immune deficiency dose but I still hope to slowly increase it until I reach the AI dose. My doctors all support it but whether my insurance company will remains to be seen. I was approved for six infusions (at the lower dose) so when we ask to increase it, I am expecting them to deny me and have to appeal.
My next IVIG in 1-2 weeks is my first attempt without any steroids which is risky allergically but I had such bad side effects from the steroids that it is worth it for me to find out if I tolerate the IVIG without them. And if I do, this gives me more options to increase the dose in the future. It is all trial and error but in my case, I am hoping to lower some autoimmune antibodies and see if this makes a difference. It has vastly improved my MCAS so I tolerate normal food and smells again but it has not (yet) improved my other symptoms.