Getting easily startled

[kjetilv]

Hey. I get very easily startled. For instane if someone rings the doorbell, knocks on my door or drop something to the ground. If I get very startled once it may trigger PEM/a flare, and also if I get a little startled 2-3 times in a short space of time. Does anyone else have this, and what may the cause be? Is this normal for moderate-severe patients? And I don’t really have much anxiety/fear (a little bit comes with the illness though, but it’s not bad) so I don’t think it’s that.

My worst ME-symptoms are the sensitivities with sensory stuff, like alot of movement in front of my eyes and especially sound (hyperacusis). I tolerate very little without crashing, and wear noise cancelling headphones nearly all the time.
Would love to know if there’s anything to do with these issues. They’re very debilitating.

Thanks in advance

 

[BrightCandle]

Noise and light sensitivity are pretty common symptoms. I can't stand dinner plate and cutlery noises any more and the door bell is equally bad, it just burrows into my brain the same way fingernails on chalkboard do its completely un-ignorable and can kick off quite a lot of adrenaline. It was worse when I was 100% bed-bound.

Its usual with ME/CFS but I don't know much of what we can do about it. I do know after such a jump its often an idea to go and relax/meditate do whatever you need to re-engage the parasympathetic system,

 

[linusbert]

Hey. I get very easily startled. For instane if someone rings the doorbell, knocks on my door or drop something to the ground. If I get very startled once it may trigger PEM/a flare, and also if I get a little startled 2-3 times in a short space of time. Does anyone else have this, and what may the cause be? Is this normal for moderate-severe patients? And I don’t really have much anxiety/fear (a little bit comes with the illness though, but it’s not bad) so I don’t think it’s that.

My worst ME-symptoms are the sensitivities with sensory stuff, like alot of movement in front of my eyes and especially sound (hyperacusis). I tolerate very little without crashing, and wear noise cancelling headphones nearly all the time.
Would love to know if there’s anything to do with these issues. They’re very debilitating.

Thanks in advance

please check the thiamin channels, e.g. from oliver3.
these kind of symptoms always should be tried with thiamin support.

 

[kjetilv]

Thanks for the response guys!

@BrightCandle - I can relate to that. Really awful symptoms to have. Let’s hope it gets better some day.. And thanks for the ideas on meditation! It’s not easy to do after such an incident but I’m sure it could be helpful.

@linusbert - I’ve taken a Vit B-complex nearly every day this year (atleast 4 days a week), that contains 1.4mg of thiamine. I also remember trying high dose thiamine a few years ago with no effect, but I’m keen on giving it another try. How many mg/day is it good to try? Thanks

 

[linusbert]

Thanks for the response guys!

@BrightCandle - I can relate to that. Really awful symptoms to have. Let’s hope it gets better some day.. And thanks for the ideas on meditation! It’s not easy to do after such an incident but I’m sure it could be helpful.

@linusbert - I’ve taken a Vit B-complex nearly every day this year (atleast 4 days a week), that contains 1.4mg of thiamine. I also remember trying high dose thiamine a few years ago with no effect, but I’m keen on giving it another try. How many mg/day is it good to try? Thanks

you really should checkout those threads, its complex. there is also hormonsmatter and other sites.
1.4mg is nothing.
should be 100mg+
thiamin needs potassium and phosphor.
also other thiamin forms like benfotiamine or allitiamine or sulbultiamine can be tried. thiamine mono nitrate / hcl are the weakest forms.

b-complex is fine, but you need also minerals and trace elements. and lipid vitamins ADEK


btw, this forum has a dark mode. i see many folks writing in different colors probably to make text more readable.

 

[Nord Wolf]

@kjetilv - Like the others have said, what you are experiencing isn't rare in neuroimmune/dysautonomia conditions. Being a severe level myself, and being bed or couch ridden about 85% of the time from autumn through winter, light and noise can be obnoxious. Dishes, cutlery, glass, metal, a ringing phone, people's voices; sometimes running water, rustling paper, and so many other sounds just turn my ears into tunnels of pain! This, as you mentioned, sets my nervous system into fight or flight mode, which can in-turn trigger crashes into PEM.

I find ear plugs help a lot. But also practices such as meditation, breathing exercises, ice water on the face every few hours (triggers relaxation in the nervous system), using my Heartmath emWave2 to work on my coherence levels, massaging around my ears, eyes, throat, neck and scalp multiple times a day, and lightly tapping around my ears and back of the head can help alleviate noise triggers for me.

If someone is having a super sensitive day, there is no shame in taking propranolol to level out the nervous system.

If you need some breathing exercise info for calming the sympathetic nervous system, just let me know. I'd be happy to share.

Går så bra, skal du se. Med tiden... Vi kan i det minste håpe.

 

[Violeta]

Hyper reflex can be related to excess serotonin. Would accoustic startle reflex be the term of what we're talking about?

I also see dopamine mentioned in studies about it.

I also have hyper response to noises, sometimes I even scream. Although the scream response isn't as annoying as the feeling that goes through my body in response to some maybe not so loud annoying noises.

 

[kjetilv]

@linusbert Thank you so much for the info. I’ve checked thiamin availablility, and all retailers in Norway sell either mono nitrate og hcl! Really annoying. Are they still worth a shot - in your opinion, or too weak? Will have a look at those threads.

I do take a good multi-vit supplement aswell.

And thanks for the tip regarding dark mode - didn’t know about it. I changed to blue text, hopefully it’s a bit better now.

 

[kjetilv]

@Nord Wolf I’m sorry for your struggles. I can totally relate to all that you said… It might seem like our level of activity and noise sensitivty is about the same.

Those are some really nice ideas, some of which I’ve not tried! The ice water to the face sounds interesting, will try it. I usually try to go to a cool room when experiencing painful sounds because I get so warm.

And yes, some info on breathing exercises would be great - I’ll send you a DM. No rush with responding.

Stilig at du kan litt norsk. Vi håper på bedre tider, kamerat! Må ikke miste håpet. Takk for hjelpen!

 

[linusbert]

Thank you so much for the info. I’ve checked thiamin availablility, and all retailers in Norway sell either mono nitrate og hcl!

the threads will explain in detail.
it must be higher dosed than others. but how you respond to it nobody can say. everyone reacts different to the same thing. what form works for you , you must find out.

norway is EU, also near to germany, you should be able to find a shop which sends all forms to you.
iherb.com

 

[lenora]

Thiamine seems to be something we all need. However, the amount is a problem. What have you, who have tried it, found to be the best amount....and what is needed with it? Is there a product that combines all of them? How many vitamins, supplements can we take?

Just your experiences and we'll try to form some consensus from there. It would be a great help as I've noticed a lot of us are interested in Thiamine. Thanks in advance. Yours, Lenora

 

[Nord Wolf]

@Nord Wolf I’m sorry for your struggles. I can totally relate to all that you said… It might seem like our level of activity and noise sensitivty is about the same.

Appreciated, and you may be correct in our levels of energy and activity, which means I am also sorry for you challenges, especially at your age.

Those are some really nice ideas, some of which I’ve not tried! The ice water to the face sounds interesting, will try it. I usually try to go to a cool room when experiencing painful sounds because I get so warm.

Quite welcome. Yes the cold exposure on the face helps me a lot. I've been doing that for years. In winer I fill up a large bowl half way in the morning with snow. Then I fill the rest with cold water. Throughout the day I submerge my face in the ice water for 30 seconds, then 30 seconds out, then 30 seconds in, and do that for about 2 minutes each time. It helps calm my nerves, energize my mental focus, and even at times lower my blood pressure.
In the warm season I have to use ice cubes and cold water. But I've heard of people getting similar benefits with just cold tap water without ice.

And yes, some info on breathing exercises would be great - I’ll send you a DM. No rush with responding.

I will send that info as soon as I'm done replying here.

Stilig at du kan litt norsk. Vi håper på bedre tider, kamerat! Må ikke miste håpet. Takk for hjelpen!

Ja, vi må håpe på bedre tider. Hvis vi ikke gjør det, hva annet har vi? Jeg sender deg en privat melding snart.

 

[Nord Wolf]

Thiamine seems to be something we all need. However, the amount is a problem. What have you, who have tried it, found to be the best amount....and what is needed with it? Is there a product that combines all of them? How many vitamins, supplements can we take?

@lenora - I take Super Potency Thiamine at 500 mg every other day. Brand Solgar. I also take Active B-Complex by Integrative. And then also liquid BioActive B12 full spectrum maximum absorption and Methylation by Pure Therapro.
I just started the liquid B12. The Thiamine I've been taking all winter, but only in the last two weeks figured my best dose was every other day at 500 mg. Everyday causes muscle cramps and pain in my upper back and neck.

 

[lenora]

Just what I needed.....the full rundown, with names. Thanks @Nord Wolf.

Alternating between hot and cold in showers also helps with pain, but nothing beats health. Yours, Lenora

 

[Nord Wolf]

Just what I needed.....the full rundown, with names. Thanks

Quite welcome

Alternating between hot and cold in showers also helps with pain, but nothing beats health.

Yes I work with Cold Exposure which really helps the pain. I talk about it on this thread called Cold Showers!

 

[Strawberry]

@Gingergrrl As she used to have severe startle affect. She might have good advice for you also.

 

[Gingergrrl]

@Gingergrrl As she used to have severe startle affect. She might have good advice for you also.

I don't know if my (prior) situation is relevant to this thread but I am happy to share more about. I had an insane startle reflex for several years to minor every day things like the doorbell, the phone ringing, or another person's voice/movement (if I did not see them enter the room and did not know that they were there). It would trigger an adrenaline reaction that felt like a shock to the heart and it could last for 24 to 48 hours. I cannot even explain how severe it was at that time!

It turned out that I had very high autoantibodies called Anti GAD65 and when I did IVIG (for other issues) it completely eliminated the insane startle reflex and it never returned. Anti GAD65 autoantibodies attack the enzyme that converts GABA (calming) to Glutamate (excitatory/agitating) so this actually made sense. These autoantibodies often correlate to two medical issues that I do not have (diabetes and Stiff Person Syndrome) but they can also correlate with two issues that I do have (Dysautonomia & Hashimoto's).

 

[cheeseater]

I agree with linusbert that vitamin B1 is worth a try. Get some 100mg tabs and take 2-3 times a day (not expensive). Also get some 99mg potassium pills (very inexpensive) and take 2-3 times a day.

 

[junkcrap50]

Yes. I have experience this in the past. Even someone saying my name to get my attention would cause me to jump. It didn't last long for me (couple months), either because it was temporary/transitory or because I was trying all kinds of treatments (which I don't remember as it was a long time ago) which incidentally fixed it. So I don't know what helps in treating it. It's likely an HPA/neurotransmitter issue, but I would guess anything that treats with brain inflammation and/or disautonomia (increase parasympatheic tone) might help too.

 

[lenora]

My sister had Stiff Person Syndrome....a most horrible illness. It's another one that is hard to get a diagnosis on, although things have improved from the time she started her illness. Sadly, she died b/c of another illness. I still miss her, but I'm glad that she's no longer suffering. Yours, Lenora