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

[Gingergrrl]

This Poll is an off-shoot from another thread (link below) in which I asked for feedback re: my extremely exaggerated startle reflex/response. I realized after three pages that I'd wished that I had included a poll. So I am creating this new thread as a poll b/c I didn't think enough people would go back and view the other thread if they had already replied, or might not view it at all if they thought it didn't pertain to them.

I am curious to learn via Poll form how many of us on PR have this exaggerated startle reflex/response and hoping that this data might help the researchers. And if nothing else, it might help us to figure out what is going on and why we have this!

For further discussion, we can stick with the original thread and just keep this one as a Poll. Thank you in advance to all who vote!

http://forums.phoenixrising.me/inde...d-startle-response-need-help-with-this.47152/

 

[Cheesus]

I'll reply here as I need to explain my 'Other'. I used to have this very badly, it could take hours for my nervous system to settle after a small shock, but it has now significalty diminished - initially because of meditation but recently due to LDN.

Maybe we could use it as a diagnostic test? We'll have doctors lurking behind hospital corners waiting to jump out on people. Alternatively we could just see what happens when people with suspected ME are told about treatment options.

 

[ahimsa]

I checked "moderate." A few comments:

1. My reaction to being startled varies a lot.

On good days it might not be a problem at all. On bad days (during a PEM "crash") it is a lot more likely to be a problem. That is, I'm more easily startled and the after-effects last longer.

2. When this is "bad" (for me) then it takes me anywhere from 25-30 minutes until the affects feel like they have worn off. (So sorry to hear that for some folks it lasts hours! )

This means I have to rest that long until my heart rate is back to normal, my brain starts to function again, and so on. Very annoying since I already have to carefully budget energy/time to get tasks done.

3. I don't get muscle stiffness or muscle aches/pain from this.

I do get muscle twitching ALL THE TIME (fasciculations) but that's not from being startled. That's just an annoying background symptom that I've had since the onset of this illness back in 1990.

 

[Valentijn]

It's also pretty intermittent for me to have an exaggerated startle response. In my case it seems to be associated with bad patches of OI, which might have something to do with my low levels of norepinephrine. My worst one was when I was heading into several weeks of not being able to sit up for more than a minute at a time.

I haven't had the extended OI episodes since starting Yohimbe, and I think Strattera helped as well. So no bad startle responses either. I answered "mild".

 

[loops]

During my Tilt Table Test the doctor said I had an exaggerated startle response....I imagine it's all part of having a dominant Sympathic Nervous system?..and being hyperadrenergic...? ..(mind you, being strapped to a table and dosed with nitroglycerin would be enough to startle anyone!)

 

[ahimsa]

Maybe we could use it as a diagnostic test? We'll have doctors lurking behind hospital corners waiting to jump out on people.

Hey, @Cheesus , watch out! Some doctors might take your idea seriously!

After all, someone out there came up with the idea for the PACE trial.

 

[Gingergrrl]

Thanks to everyone who responded to this poll and am bumping it back up in case anyone missed it who wants to respond before I try to analyze the numbers... since I am such an expert analyst LOL .

 

[liverock]

@Gingergrrl

One of the most common reasons for an exaggerated 'startle response' is due to hormone levels.

People with EBV usually use up a lot of progesterone in making the high cortisol levels that goes with EBV,and eventually the progesterone can go lower. Lower progesterone lowers GABA which will increase the 'startle response'

It sounds as is if you could be depleted of either progesterone, or pregnenolone the mother hormone that backs it up.The hormone system will prioritise the cortisol pathway at the expense of other hormonal pathways when there is a call for increased cortisol.(Pregnenolone Steal)

It might be worthwhile getting your hormones checked. In this study taking synthetic progestin for low progesterone did not help with startle responses, only natural progesterone seemed to work.

https://www.sciencedaily.com/releases/2005/02/050212190826.htm

https://selfhacked.com/2014/06/27/h..._ViralInfections_CauseLow_Pregnenolone_Levels

 

[Gingergrrl]

People with EBV usually use up a lot of progesterone in making the high cortisol levels that goes with EBV,and eventually the progesterone can go lower. Lower progesterone lowers GABA which will increase the 'startle response'

@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)?

It might be worthwhile getting your hormones checked.

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.

 

[Gingergrrl]

In analyzing the Poll Results (as of 10/7/16), it looks like 13 people have no startle response, 11 have a mild response, 10 have a moderate response, and five have a severe response.

So the total "No" votes are 13 and the total "Yes" votes are 26 which is exactly double. But of course, there is a spectrum within the "Yes" votes with only five of us (myself included) having the most severe response.

I am curious if the other four people in the severe group have ever been tested for the Anti GAD65 antibody (if anyone is comfortable to disclose this)?

 

[liverock]

@Gingergrrl

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)?

Normally, everyday stressful events, such as being startled will be handled by cortisol with few symptoms, but if cortisol is low and the adrenals can't mount an adequate stress response, sudden adrenaline surges now replace a lot of the work that cortisol used to do throughout the day instead, which is much harder on the CNS and can create neurological symptoms. You could try increasing Cortef dosage to see if this is the problem.

I don't know whether this is any help,but progesterone has shown to free rats from cocaine addiction by modulating the GAD 65 pathway and increasing GABA levels.
https://www.ncbi.nlm.nih.gov/pubmed/19855903

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?

You can get progesterone and pregnenolone in transdermal (natural creams) or oral synthetic pills(progestins). If you want to use natural creams you usually have to be treated by a Naturopathic Endo, most MD Endo's will want to prescribe synthetic progestins (usually in the form of BC pills !).

http://www.progesteronetherapy.com/
http://www.progesteronetherapy.com/peri-menopause.html

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.

It might be worthwhile to check vitamin d levels as well.

 

[Gingergrrl]

@liverock Thanks for these links and you always find the most interesting stuff! Will reply here and probably follow up by PM after I get a chance to read the links.

Normally, everyday stressful events, such as being startled will be handled by cortisol with few symptoms, but if cortisol is low and the adrenals can't mount an adequate stress response, sudden adrenaline surges now replace a lot of the work that cortisol used to do throughout the day instead, which is much harder on the CNS and can create neurological symptoms. You could try increasing Cortef dosage to see if this is the problem.

I just saw my Endo last week and all my doctors agreed that I stay on Cortef but I don't think any of them want me to increase it.

I don't know whether this is any help, but progesterone has shown to free rats from cocaine addiction by modulating the GAD 65 pathway and increasing GABA levels.
https://www.ncbi.nlm.nih.gov/pubmed/19855903

I am certain the GAD65 antibody is messing with my ability to convert glutamate to GABA and am working on ways to hopefully improve this. I will ask my Endo about progesterone and pregnenolone and what he thinks of them in my case. And will read the link about the cocaine addicted rats LOL.

You can get progesterone and pregnenolone in transdermal (natural creams) or oral synthetic pills(progestins). If you want to use natural creams you usually have to be treated by a Naturopathic Endo, most MD Endo's will want to prescribe synthetic progestins (usually in the form of BC pills !).

http://www.progesteronetherapy.com/
http://www.progesteronetherapy.com/peri-menopause.html

Thanks and will check these out as well although I definitely am not a candidate for BCP's.

It might be worthwhile to check vitamin d levels as well.

We actually did check my Vit D for my appt last week and it was 44. This is not horrible for me since without supplementation my Vit D drops down to around 4 to 8. When I take 10,000 IU's per day, I can maintain my Vit D around 60. I had dropped down to 5000 IU's per day to see what would happen and sure enough, it dropped down to 44. But for a long time it was staying in the 20's so this is an improvement for me. I may bump it up again to try to get it back to 60, am not sure.

 

[SGR]

I wish I would have seen this earlier. My startle response has gotten really bad this year. It was bad at the beginning of my illness and was significantly better when treated with pregnenolone and DHEA. My current dr. had me stop DHEA and pregnenolone 4 years ago. I am wondering @liverock what relationship pregnenolone has to aldosterone because one of my mast cell symptoms is a spastic bladder; perhaps this is causing the hyper reactive startling.

 

[Gingergrrl]

and was significantly better when treated with pregnenolone and DHEA

@SGR In what ways was your startle response better when you took pregnenolone and DHEA? Am also curious what doses you took (if you remember of course!) or if you have ever taken Cortef?

one of my mast cell symptoms is a spastic bladder; perhaps this is causing the hyper reactive startling.

That is so interesting that you say that b/c in my early 20's (I am mid 40's now) I had a severe problem with bladder spasms and I was in very good health overall at that time. I had two cystoscope tests and an MRI at that time and they ruled out infection, cancer, and other obvious things but never discovered the cause so of course the urologist decided that it must be "psychological" which I knew was nonsense.

They ultimately completely stopped on their own (over 20 years ago) and I literally forgot about them until reading your post. They were horribly painful and annoying at the time though.

Am curious, have you ever been tested to see if you have the anti GAD65 auto-antibody?

ETA: Am also curious why you said your bladder spasms are a mast cell symptom? Can you elaborate on that? Thanks again!

 

[SGR]

Good morning @Gingergrrl - Yes, I was on Cortef. I think I recall that I took 25 MG DHEA daily, I'm not sure what amount of pregnenolone I took - 10 mg?. I hope to bring this issue up with my naturopath next time I see her.

My startle response went away with those treatments; that was in 2007

As for the bladder, I'm sorry you went through that, sounds so painful with the added bonus of having your character assailed. When I stopped eating sugar way back when, my bladder calmed down. It seemed more like inerstitial cystitis. Now, it feels like a bladder spasm as part of a constellation of mast cell symptoms including chest/lung constriction, stuffy nose, nausea, eye pain, etc. My poor bladder burns the day after uncontrolled - I cringe to say this publicly - urination. I've never had the rest of those symptoms until this year.

No, I have not had the autoimmune test and am now very curious about that

I hope i've been clear - my brain is not functioning well today, if not, please feel free to ask more questions. Cheers.

 

[liverock]

I wish I would have seen this earlier. My startle response has gotten really bad this year. It was bad at the beginning of my illness and was significantly better when treated with pregnenolone and DHEA. My current dr. had me stop DHEA and pregnenolone 4 years ago. I am wondering @liverock what relationship pregnenolone has to aldosterone because one of my mast cell symptoms is a spastic bladder; perhaps this is causing the hyper reactive startling.

@SGR
Not quite sure what you mean by 'spastic bladder' is it overactive bladder on its own or overactive bladder with pain symptoms 'interstitial cystitis'?

Pregnenolone is the 'mother hormone' feeding the progesterone and DHEA pathways(see diagram)
During 'pregnenolone steal' the progesterone path has priority over the DHEA path to enable the cortisol level to be maintained at all times. The progesterone also normally controls aldosterone, as a counterbalance to high estrogen (which increases water retention). This control of course will not work if you have low aldosterone due to adrenal insufficiency

http://www.adrenaladvice.com/adrenal-fatigue-urination.shtml

Progesterone may also reduce mast cells in the bladder if you have IC symptoms.
https://www.ncbi.nlm.nih.gov/pubmed/8653316

https://www.ncbi.nlm.nih.gov/pubmed?cmd=Retrieve&db=PubMed&list_uids=17166400&dopt=Citation



Progesterone is supposed to be good for PD as well.

https://www.google.co.uk/search?q=progesterone parkinson's disease&rlz=1C1AOHY_enGB708GB708&oq=progesterone&aqs=chrome.0.69i59j69i57j69i59l2j69i60j69i59.26937j0j8&sourceid=chrome&ie=UTF-8

 

[SGR]

@SGR
Not quite sure what you mean by 'spastic bladder' is it overactive bladder on its own or overactive bladder with pain symptoms 'interstitial cystitis'?

I believe its "just" a spastic bladder, not IC. It'seems plenty painful, but different from IC.

g the progesterone and DHEA pathways(see diagram)
During 'pregnenolone steal' the progesterone path has priority over the DHEA path to enable the cortisol level to be maintained at all times. The progesterone also normally controls aldosterone, as a counterbalance to high estrogen (which increases water retention). This control of course will not work if you have low aldosterone due to adrenal insufficiency

http://www.adrenaladvice.com/adrenal-fatigue-urination.shtml

Interesting, I'm on a sizeable amount of progesterone replacement. I guess it's time to revisit adrenal fatigue.

toms.
https://www.ncbi.nlm.nih.gov/pubmed/8653316

https://www.ncbi.nlm.nih.gov/pubmed?cmd=Retrieve&db=PubMed&list_uids=17166400&dopt=Citation



Progesterone is supposed to be good for PD as well.

https://www.google.co.uk/search?q=progesterone parkinson's disease&rlz=1C1AOHY_enGB708GB708&oq=progesterone&aqs=chrome.0.69i59j69i57j69i59l2j69i60j69i59.26937j0j8&sourceid=chrome&ie=UTF-8

Lots of great information here, thank you so much @liverock!! (I am also on dopamine replacement. )....time to look at the ketogenic diet.

 

[South]

@Gingergrrl @liverock @SGR
Histamine connection to bladder issues/interstitial cystitis:
https://www.ncbi.nlm.nih.gov/pubmed/2750582

A pretty interesting discussion is here on low histamine diets helping some but failing to help others, and quercetin as a natural antihistamine helping some:
http://cobf.websitetoolbox.com/post/low-histamine-diet-5521050

 

[SGR]

@Gingergrrl @liverock @SGR
Histamine connection to bladder issues/interstitial cystitis:
https://www.ncbi.nlm.nih.gov/pubmed/2750582

A pretty interesting discussion is here on low histamine diets helping some but failing to help others, and quercetin as a natural antihistamine helping some:
http://cobf.websitetoolbox.com/post/low-histamine-diet-5521050

Nice, @South that clears up the bladder/histamine connection. To my knowledge I haven't ingested anything with histamine or a histamine provoking in a long time - well there was the small matter of the dental surgeon prescribing one of the worst possible drugs for pain.......I feel like I'm treading through a minefield. Thank you for your input .

 

[South]

@SGR
There are certain foods that are high in histamine, like aged, fermented, and smoked foods: many cheeses, salami, sauerkraut, red wine, for example.

They give me a little burst of energy (I don't have CFS/ME) but also seem to make me more jumpy to little surprises, and make me urinate more often yet not with any extra volume - they feel like they irritate my bladder. I don't get hives, but know people who do from those foods.

An online search for "low histamine diet" can help if you want to know more about the various foods,
here's one link
http://www.diagnosisdiet.com/histamine-intolerance/