Poll: Do you have an exaggerated startle reflex or response?

[roller]

normally i dont startle at all, not even at explosions nearby.

sometimes, i cant tell what is otherwise different in these periods, i startle when i VIEW someone (independent if i just heard them or not), that has e.g. entered the room.

my startle is triggered by the eye.

 

[Carl]

@liverock I definitely have lowered GABA b/c of the autoantibody (GAD65) which attacks the enzyme that converts glutamate to GABA. I am not sure of how EBV or progesterone play into this in my own case but it is good to know about those other factors. I already take daily Cortef (15 mg) and was wondering how that might factor in (with the other hormones, etc)?



I had a bunch of hormone tests very recently for my Endo appt but I don't think he checked progesterone or pregnenolone, but he did check estradiol and some others. He has consistently said that I have an autoimmune based early peri-menopause (starting many years ago) but I don't really understand how this all fits together.

If I were to ask him to check progesterone and pregnenolone for my next appt (in three months) what would the treatments be?

My goal is to increase GABA and try to decrease the startle reflex in it's severity. I have a supplement that I intend to try and will also be increasing magnesium.

The ginsengs, Korean, Siberian, whichever is most suitable, Siberian is more suitable for younger women, switch off the startle response ie alarm reaction. I used to take Siberian ginseng and nothing would startle me while I was taking it. The look on young people's faces after they attempt to startle people and get no reaction I find wickedly amusing. lmao

 

[Gingergrrl]

@Carl I wasn't sure if you knew that this is an old thread (that I started over two years ago) that just got resurrected? In my case, the exaggerated startle reflex 100% disappeared from IVIG and never returned. But I am hoping that this thread is still helpful for others in the future.

 

[Thegriz]

@Carl I wasn't sure if you knew that this is an old thread (that I started over two years ago) that just got resurrected? In my case, the exaggerated startle reflex 100% disappeared from IVIG and never returned. But I am hoping that this thread is still helpful for others in the future.

Do you know if your Gad65 levels after ivig?

 

[Rufous McKinney]

progesterone and pregnenolone

But what are the menopausal options? I did progrestrone creme from around 55 - 64. Stopped totally now. Mostly took it for hot flashes at night which it seemed to reduce. Hot flashes increasing being an associated symptom that can worsen in ME-types.

I guess I am Startled I will remain Startled.

 

[Gingergrrl]

Do you know if your Gad65 levels after ivig?

We re-tested my anti GAD65 autoantibody levels w/Mayo's lab in 2018 (after 2 yrs of IVIG and 1 year of Rituximab) and they had gone down. In 2016 (pre-treatment) my GAD65 was 1.6 and in 2018 it was 0.08 (so it was still positive but it had gone down quite a bit).

But what are the menopausal options?

I wasn't sure if this question was directed at me since you quoted me but I apologize that I do not know the answer (or very much about hormones). I am not menopausal yet and the only hormone I take is Cortef with the long-term plan to come off of it.

 

[Ruthie24]

This is all very interesting. My GAD-65 was very high when we tested it on three different occasions 2 years ago. My cortisol is also low and my aldosterone was "undetectable" when tested at our doctor's office in Mar. This is after about 4 years on SCIg and 2 years on Rituxan.

My startle reaction is still quite noticeable although it varies from day to day. My husband hates driving with me on my bad days as I am always overreacting to any perceived threat on the road with some kind of squeek or something.

 

[rel8ted]

My startle reaction is still quite noticeable although it varies from day to day. My husband hates driving with me on my bad days as I am always overreacting to any perceived threat on the road with some kind of squeek or something.

Does screaming when a car passes count?

 

[Gingergrrl]

My GAD-65 was very high when we tested it on three different occasions 2 years ago.

Good to see you, Ruthie ... Do you know if your anti GAD65 is still elevated now?

My startle reaction is still quite noticeable although it varies from day to day. My husband hates driving with me on my bad days as I am always overreacting to any perceived threat on the road with some kind of squeek or something.

My startle reaction is gone now but it used to be insane like I described in this thread and I was horrible in the car and my ex-husband did not like driving with me b/c of it. Now when we go somewhere, he is shocked b/c I no longer have it and the difference is striking.

 

[Ruthie24]

Does screaming when a car passes count?

🤣😂 I resemble that remark. Lol

 

[Ruthie24]

Good to see you, Ruthie ... Do you know if your anti GAD65 is still elevated now?

I think the last time it was tested was at Mayo in Nov 2017, so about 6 months after starting Rituxan. It was still elevated then. I think 1.5?


My startle reaction is gone now but it used to be insane like I described in this thread and I was horrible in the car and my ex-husband did not like driving with me b/c of it. Now when we go somewhere, he is shocked b/c I no longer have it and the difference is striking.

So happy to hear that this is yet another one of the improvements you have noticed with the Ig and Rituxan! Wish mine would be consistently decreased.