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

[SGR]

Yes, @South, I do have big problems with these foods, they spike my blood pressure something fierce. I really appreciate this link because I have never seen information about the biological pieces driving this response. Thank you so much!! I had a horrible night's sleep thanks to unfortunate food choices yesterday; the author you cited has a good article in Psychology Today about sleep and food. Excellent timing on your part .

 

[valentinelynx]

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)?

I am in moderate group, and have elevated GAD65 antibody.

 

[Gingergrrl]

I am in moderate group, and have elevated GAD65 antibody.

@valentinelynx I am very curious, how high is your GAD65 antibody? Have you ever had a "startle seizure" which two doctors and my husband and friend are certain I had yesterday to our fire alarm going off? Has any doctor ever thought you could have SPS (Stiff Person Syndrome)? Thank you in advance for any info and apologies if I am slow to reply.

 

[Gingergrrl]

As for the bladder, I'm sorry you went through that, sounds so painful

The bladder spasms were in the early to mid 90's and I have never had them again. Truly no idea what triggered them or why they stopped.

 

[valentinelynx]

@valentinelynx I am very curious, how high is your GAD65 antibody? Have you ever had a "startle seizure" which two doctors and my husband and friend are certain I had yesterday to our fire alarm going off? Has any doctor ever thought you could have SPS (Stiff Person Syndrome)? Thank you in advance for any info and apologies if I am slow to reply.

@Gingergrrl - sorry I was out of town and away from my computer. My GAD65 Ab level was 43 IU/mL. I don't know how this compares to levels in people with SPS or Type 1 diabetes or anything, as the units don't appear to be standardized across labs. What was your level?

As for symptoms, no I don't have anything close to SPS. I do have muscles that stiffen up badly after being still (e.g. sitting). I also have very brisk reflexes and an exaggerated startle reflex. I hate sudden loud noises, but I can't say I've had anything like a "startle seizures" or any kind of seizure, either.

Nor do I have diabetes or glucose intolerance.

I gather that Dr Kaufman believes the GAD65 indicates something going on in the central nervous system, but no specifics.

 

[Gingergrrl]

My GAD65 Ab level was 43 IU/mL. I don't know how this compares to levels in people with SPS or Type 1 diabetes or anything, as the units don't appear to be standardized across labs. What was your level?

Thank you and the numbers definitely are not standardized as far as I can tell b/c my results (and the scale) used by Mayo vs. Quest are very different. Do you happen to remember which lab you were tested at? My number was only 1.6 which seems very low compared to your 43 but my symptoms are really bad (as far as potential SPS, I do not have any type of diabetes and this has been ruled out). My test does not say IU/mL and just checked to be sure but have no idea what units it did use.

I hate sudden loud noises, but I can't say I've had anything like a "startle seizures" or any kind of seizure, either.

I have only had what we think was a "startle seizure" once and without an EEG at the time, we will never know for sure. If it happens again, I am supposed to go to the ER. But over the past 1-2 yrs my startle reflex has gotten progressively worse and now it is unbearable.

Nor do I have diabetes or glucose intolerance.

I do not have diabetes or any glucose intolerance and the potential concern for me is SPS. We are trying to figure this out, if it is possible. Am trying to find a Neuro familiar with doing an EMG for SPS, which I have not had. Right now am just trying to find a decent Neuro period.

 

[Gingergrrl]

My number was only 1.6 which seems very low compared to your 43 but my symptoms are really bad

Am quoting myself b/c a friend helped me figure out last night that our tests were using different measurements but in both cases we are approx eight times higher than the number should be (just using different measurement scales).

 

[valentinelynx]

Am quoting myself b/c a friend helped me figure out last night that our tests were using different measurements but in both cases we are approx eight times higher than the number should be (just using different measurement scales).

Thanks for that input. My labs were done by Quest.

Thinking about loud noises... I find them very disturbing. Unbearable, really. One of the worst is these hand dryers that stores are installing in bathrooms, called "Xlerator." I've measured the decibel output of these while sitting in the stall (with my iPhone) as 95 db (level at which sustained exposure may result in hearing loss - 30 -60 minutes). Apparently this is equivalent to a jackhammer at 50 feet, a power mower, or a motorcycle at 25 feet. Confirmed by a study I read (table below, minus the formatting - sorry. You can see original here (from an Acoustical Society of America report according to the article). The article's main concern seemed to be the effect on restroom conversation! What about the the known health detriments of exposure to loud noises?

For me, the noise of these dryers makes me wince, cringe, feel beaten and miserable. Rather than use them, I air dry my hands. But I can't stop others from using them. You can hear them from the checkout lanes at Target or Walmart.

Even the noise of the fan my husband likes to sleep with causes me distress. When he turns it off in the morning, I feel like a weight has been lifted off of me. I also hate the sound of our air conditioner (we live in Tucson, and the air conditioner is not optional about 8 months of the year).

If my husband turns on the TV without turning down the volume, it feels like an assault.

I wonder if all this noise sensitivity is related to the GAD65 antibody?


A Guide to Hand Dryer Noise by
Hand Dryer Model # Dry Time (sec) Approx ($) Approx Decibels
Dyson Airblade AB 14 10 1349 80
Xlerator XL-BW 12 400 95
World Dryer Airforce J-974 14 322 85
World Dryer AirMax XM5-974 15 420 83
World Dryer Model A XA5-974 27 400 82
Electric-Aire LE1-974 40 178 70
Fast Dry HK-1800PA 45 100 58

 

[zzz]

I wonder if all this noise sensitivity is related to the GAD65 antibody?

I think it's quite likely. @valentinelynx, I know that you have posted that you were a patient of Dr. Goldstein's for a number of years, so you may be interested in the way his writings relate to this. From his book Tuning the Brain, on page 367 (from Google Books):

The GAD65 Ab is known to create a hyperglutamatergic state by preventing glutamate from being converted into GABA. So the noise sensitivity in this case could be seen as an example of a central sensitization caused by this hyperglutamatergic state. Based on the referenced work by Maneuf and colleagues cited above, a combination of magnesium and gabapentin would be expected to be effective in reducing this central sensitization and therefore the noise sensitivity. Either substance alone could be expected to be helpful, although the combination would seem to be ideal.

It is interesting to note that gabapentin is one of the few drugs known to be effective against stiff person syndrome. However, the mechanism that is generally assumed there is that it is gabapentin's ability to potentiate the effects of GABA that is responsible for its success. While this ability may certainly be helpful, gabapentin's other mode of action detailed above may also be at work.

 

[valentinelynx]

I think it's quite likely. @valentinelynx, I know that you have posted that you were a patient of Dr. Goldstein's for a number of years, so you may be interested in the way his writings relate to this. From his book Tuning the Brain, on page 367 (from Google Books):

The GAD65 Ab is known to create a hyperglutamatergic state by preventing glutamate from being converted into GABA. So the noise sensitivity in this case could be seen as an example of a central sensitization caused by this hyperglutamatergic state. Based on the referenced work by Maneuf and colleagues cited above, a combination of magnesium and gabapentin would be expected to be effective in reducing this central sensitization and therefore the noise sensitivity. Either substance alone could be expected to be helpful, although the combination would seem to be ideal.

It is interesting to note that gabapentin is one of the few drugs known to be effective against stiff person syndrome. However, the mechanism that is generally assumed there is that it is gabapentin's ability to potentiate the effects of GABA that is responsible for its success. While this ability may certainly be helpful, gabapentin's other mode of action detailed above may also be at work.

Thanks. That's interesting.

 

[Gingergrrl]

@valentinelynx I had the test once at Quest from same exact blood draw as when it was sent to Mayo (hospital erred and this was not intentional) and Mayo test consistently showed high GAD65 yet Quest test was negative... From the same blood sample!!! So moving forward, I am not trusting any of these more specialized tests from Quest.

On a separate note, at present I have no issues with noise, even those bathroom hand driers as long as I am prepared for the Noise and know it is coming. I am okay with our HEPA filters, fans, a/c system and even my husband's CPAP.

But when there is a sudden and unexpected noise, my body and brain can no longer process it and the reaction can be extreme. When fire alarm went off the other day in our unit (right above my desk) I screamed and my husband and friend found me on floor basically non responsive for several minutes. I was dead weight and they could not lift me to the bed and I could not make eye contact or speak. My muscles were shaking and it was very painful.

I have only had this one incident to that extreme and normally I do not lose awareness but the startle triggers a feeling like a shot of Epi to the heart and I start shaking and muscles out of control. Am certain this relates to the GAD65 Ab for me and it's really becoming a nuisance on top of my other problems.

 

[ahimsa]

... at present I have no issues with noise, even those bathroom hand driers as long as I am prepared for the Noise and know it is coming. I am okay with our HEPA filters, fans, a/c system and even my husband's CPAP.

But when there is a sudden and unexpected noise, my body and brain can no longer process it and the reaction can be extreme. When fire alarm went off the other day in our unit (right above my desk) I screamed and my husband and friend found me on floor basically non responsive for several minutes. I was dead weight and they could not lift me to the bed and I could not make eye contact or speak. My muscles were shaking and it was very painful.

Eeek! @Gingergrrl I'm so sorry to hear about your reaction to the fire alarm. Sounds horrible.

It's one of those worst case scenarios, when you're in your own house, your guard is down, and you're not expecting anything like this, and then BOOM. That's when being startled causes the worst reaction for me.

Like @Gingergrrl I also have a problem being startled by noise(s) but I'm not that bothered by loud noises. I don't have symptoms that are as extreme but the issue is the same. The problem is with being startled, not with loud noises.

I don't particularly like loud noises (can be irritating at times!) but loud noises don't cause this particular problem for me.

Also, I can be startled by things that are not noisy at all. Before my husband and I figured out that this was a problem for me he used to walk into a room without me hearing him. Then he'd say something to me thinking that I knew he was there. Or he'd tap me on the shoulder. Either situation -- no noise -- would often get me so startled that I'd scream (well, maybe scream is the wrong word, really just a short little "Ahhh!"). And then immediately feel silly/stupid about such an overreaction.

 

[Gingergrrl]

Eeek! @Gingergrrl I'm so sorry to hear about your reaction to the fire alarm. Sounds horrible.

Thanks and it was pretty bad.

It's one of those worst case scenarios, when you're in your own house, your guard is down, and you're not expecting anything like this, and then BOOM. That's when being startled causes the worst reaction for me.

We had advanced warning that they would be testing the alarms in our entire bldg from 9-5 pm. However, I checked with the bldg office twice and they said we'd get a knock at the door first and the fire dept w/bldg maintenance guy would come in. But this did not occur and once the alarm started, it kept going off every few minutes. My best friend came over to take me out for the day to avoid the alarms but I was not quite ready to leave at 9:00 am and thought I had time. But the alarm went off shortly after 9 am and scared me to the point we think I may have had a "startle seizure" but we really are not sure. It has only happened that one time so unless it happens again, nothing I can do.

Like @Gingergrrl I also have a problem being startled by noise(s) but I'm not that bothered by loud noises. I don't have symptoms that are as extreme but the issue is the same. The problem is with being startled, not with loud noises.

Exactly and I can watch TV or listen to music if I know it is happening. It's just the act of being startled and the noise does not have to be loud or uncommon. Am sure it is connected to this GAD65 antibody and that my POTS antibodies & autonomic issues do not help.

 

[valentinelynx]

Also, I can be startled by things that are not noisy at all. Before my husband and I figured out that this was a problem for me he used to walk into a room without me hearing him. Then he'd say something to me thinking that I knew he was there. Or he'd tap me on the shoulder. Either situation -- no noise -- would often get me so startled that I'd scream. And then immediately feel silly/stupid about such an overreaction.

Oh, i do that too, in spades.

 

[valentinelynx]

When fire alarm went off the other day in our unit (right above my desk)

I cannot imagine how my body/brain would react to a startle of this intensity. I feel for you... I think that an event like that might even trigger a PTSD like syndrome.

 

[Gingergrrl]

I cannot imagine how my body/brain would react to a startle of this intensity. I feel for you... I think that an event like that might even trigger a PTSD like syndrome.

Do you think it could trigger a "startle seizure"? My husband described what occurred to my main doc and neuro and both independently felt it was some type of seizure b/c I was non-responsive for several minutes per my husband and friend. My muscles were like dead-weight and I could not speak and they could not move me to the bed. I have no memory of the middle of the event but I remember the fire alarm going off and I remember them trying to move me and me arguing that I wanted to go back to the computer (b/c I did not understand what had happened). I am not asking for medical advice but is there any other explanation? I would love for it to be some type of PTSD vs. a startle seizure but I have no PTSD re: fire alarms and in general the noises I react to are very benign daily things that have no deeper meaning for me. This is the only event that startled me to this magnitude and if I had been eating or swallowing a pill when that fire alarm went off, I think I would have choked to death!

 

[valentinelynx]

Do you think it could trigger a "startle seizure"? My husband described what occurred to my main doc and neuro and both independently felt it was some type of seizure b/c I was non-responsive for several minutes per my husband and friend. My muscles were like dead-weight and I could not speak and they could not move me to the bed. I have no memory of the middle of the event but I remember the fire alarm going off and I remember them trying to move me and me arguing that I wanted to go back to the computer (b/c I did not understand what had happened). I am not asking for medical advice but is there any other explanation? I would love for it to be some type of PTSD vs. a startle seizure but I have no PTSD re: fire alarms and in general the noises I react to are very benign daily things that have no deeper meaning for me. This is the only event that startled me to this magnitude and if I had been eating or swallowing a pill when that fire alarm went off, I think I would have choked to death!

Sorry, I was unclear... I meant that such an event, if it happened to me, might trigger a PTSD like syndrome in the future. Meaning that I would become hypervigilant about fire alarm like sounds, and my startle responses would get even worse. I didn't mean that it would do that instead of a "startle seizure."

As for whether you had a startle seizure or not, I really can't say. I'm not an expert in this area - everything I know about it I just read just now on the internet... What I did read indicated that startle epilepsy is rare, and rarer as adult onset. Not that means anything when you are in the world of ME/CFS. Here's a paper about a case of adult onset startle epilepsy: Adult onset startle epilepsy

It seems to me you will need an EEG study in which startling stimuli are administered to find out if you truly are subject to having seizures when startled. I know you are seeking a neurologist, and this would be their territory.

As for what else it could be: well, the two big candidates for causing sudden loss of consciousness are: 1. neurological, and 2. cardiac. If the sudden loud noise caused you to go into an arrhythmia, that could cause fainting as well. A prime case is long QT syndrome. Did your doctor order an EKG after your episode? Generally, when someone has an unexplained fainting episode, it warrants both a neurological and a cardiac workup.

All the best - I hope you have no repeats of this obviously terribly distressing episode.

 

[Gingergrrl]

Sorry, I was unclear... I meant that such an event, if it happened to me, might trigger a PTSD like syndrome in the future. Meaning that I would become hypervigilant about fire alarm like sounds, and my startle responses would get even worse. I didn't mean that it would do that instead of a "startle seizure."

Thanks for explaining and that makes total sense and I do have PTSD of the fire alarm going off again. My daughter's smoke alarm was beeping a little while ago (low battery) and soft compared to the alarm and it brought back memories LOL.

As for whether you had a startle seizure or not, I really can't say. I'm not an expert in this area - everything I know about it I just read just now on the internet...

Likewise LOL.

What I did read indicated that startle epilepsy is rare, and rarer as adult onset.

I agree it is rare and I don't actually think that I suddenly developed epilepsy in my 40's vs. the extreme startle reflex from the GAD65 Ab and possible SPS. But I really do not know what to think sometimes, my case it so weird.

Here's a paper about a case of adult onset startle epilepsy: Adult onset startle epilepsy

Thank you and I just bookmarked this post so I can go back and read it.

It seems to me you will need an EEG study in which startling stimuli are administered to find out if you truly are subject to having seizures when startled.

I honestly do not think my autonomic nervous system could handle that right now!

As for what else it could be: well, the two big candidates for causing sudden loss of consciousness are: 1. neurological, and 2. cardiac. If the sudden loud noise caused you to go into an arrhythmia, that could cause fainting as well. A prime case is long QT syndrome. Did your doctor order an EKG after your episode? Generally, when someone has an unexplained fainting episode, it warrants both a neurological and a cardiac workup.

That was very helpful and ironically I had an EKG about 1-2 wks prior to this episode and it was normal like all of my EKG's. My husband said I did not faint and was not unconscious b/c my eyes were open but that I was more unaware of what was happening and could not respond to their questions. I wish my best friend or my husband would have videotaped it but they did not think of it until after the fact. I know I do not have Long QT syndrome (from many EKG's) and I suspect if anything the fire alarm triggered some type of seizure vs. a cardiac arrhythmia.

All the best - I hope you have no repeats of this obviously terribly distressing episode.

Thank you so much and hoping it never happens again. If it does, I will get the EEG and other tests.

 

[alice111]

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.

I thought I would add mine also improved with LDN.. interesting. I still get it, and it varies, but not to the extreme degree I used to!

 

[Ben H]

I voted moderate. This is a new symptom for me since my M.E became severe. If it happens in the dead of night it is horrendous- had a plastic bottle of water on the side that while sleeping decided to crinkle and it sent me into an absolute state for half an hour. Ive attributed to the ANS being dysregulated, but its just a guess.


B