zerohours000

29 minutes ago, valiz said:

I was having, what I call involuntary body jerks.  I also had accompanying involuntary moan/groan at the same time of the jerks mainly when falling asleep.  If I had them during the day they were less severe.  The severe ones happened when I was trying to go to sleep or that transition time.  Some times I just had several and other times 10-12 before I could finally go to sleep and stay asleep.  As you can imagine I had terrible insomnia.  After numerous times my body would quit wanting to go to sleep.  That was the first symptom to resolve after I started taking Northera (Droxodopa).  Unfortunately I can't afford to taking it past this year unless I can get help from NORD or some other organization.  I don't at all understand the mechanism causing it.  I have PAF.  I know this doesn't help you but wanted to share my experience and let you know you are not alone.  Elizabeth

@valizThanks for sharing.  I have a constant twitching in my pinky and finger finger where they both twitch inward.  I’m just hoping it’s not early onset Parkinson’s disease.  Hope you’re doing better.

1 hour ago, bombsh3ll said:

Hi zerohours000,

I know you are worried but what you describe, the hypnagogic jerks and finger twitching can be completely benign. I have had both for many years whilst I was still living a happy and healthy life for about 14 years before my POTS onset. The latter is known as BFS or benign fasciculation syndrome. I'm not even sure these things are connected to dysautonomia, just like people can have other things like asthma, and then get dysautonomia as well. 

I had myself worried sick at the time re the twitching for about a year, thinking I had some kind of terminal illness like ALS that I would die from. It wasn't disabling though just a nuisance which didn't stop me from doing anything, and I wish I hadn't wasted that precious time in my youth worrying about something that was literally nothing. 

I hope your tests will come back clean and put your mind at rest about these two symptoms at least. 

B xx

 

 

 

Thanks.  I had an EMG in June — normal.  I guess I’m just worried about Parkinson’s. But I’ve alsi heard adult Celiacs can present neurologically.  

Money neuro already said it was BFS and I basically believe them.  So it’s just the other one I’m concerned about.

2 hours ago, DizzyGirls said:

When you are going to sleep... that would most likely be when the sympathetic is supposed to relax and parasympathetic takes over.  Sounds like yours isn't working like that.  My daughter's pain and tremors seem to come when she is at rest or in the evening and at night, especially when she is trying to go to sleep.  Hang in there!

I don’t fall asleep until like 3:30 am.  Thx.  Im trying buy it’s so hard.  

My recent doctor told me he is leaning either rheumatological or neuromuscular.  Neither sound particularly good.  I have never been diagnosed with Dysautonomia so this is not a shock I suppose.  My most recent symptoms are these weird muscular jerks before going to sleep, and only when going to sleep.  But I do have a twitch now in my left hand hand, in my ring and pinky finger.  A twitch in the sense that it bends inward to the palm, so twitches towards the palm.  Could be nothing, overuse of my phone, or like the doctor said—neuromuscular.  All very depressing.  I’m only 33 and I feel just so sad like I already died.  Sorry to be a bummer.  Just feeling alone and bummed.

36 minutes ago, Anamaria said:

I meant to say that I have low B12 at the moment and that can cause twitching so in a few months when my B12 is back up I’ll be curious to see if the twitching stops 

Yes.  It’s hard to know what’s causing what.  

5 hours ago, DizzyGirls said:

I have been trying to find out for the past two years why my daughter has bad tremors while she's at rest or trying to fall asleep.  There's pain, then tremors, then she'll have these contractures or postures that are from the muscles pulling so hard.  She hasn't been able to relax and enjoy an evening since 2016.  She also tends to be unconscious as well. 

Sorry to hear that.  I don’t get tremors per se.  I do feel like there’s an internal trembling or something.  But I get a lot of jerks and twitches as well.  

2 hours ago, Echo said:

Thanks @zerohours000 ...what is PA? 🤔

@EchoPernicious Anemia

2 hours ago, Echo said:

Hi @Pistol so does that mean if the B12 test comes back normal then you don't have issues with absorption? I've had mine tested several times but it always comes back normal, right in the middle of normal range. Or can you have a normal blood test but still be deficient?

@EchoYes---because my mother doesn't have PA but is deficient.  Similarly, many with autoimmune are deficient.  It's an easy fix but not so easy to catch.  For example, I have HIGH b12 which could indicate my active b12 isn't being used whatsoever.  But we'll see...

1 hour ago, MomtoGiuliana said:

Yes when I had severe POTS relapse in May and June it was very disruptive to sleep.  I am not sure if it was being caused by low B12, severe POTS or a combination of the two.

My suspicion is that it's from some vitamin deficiency or possibly the dysautonomia itself --- even though everyone says it's not dysautonomia.  So I'm very confused.

1 minute ago, Pistol said:

I was told by both physicians as well as nutritionists that many people with B12 deficiency are unable to absorb B12 from diet or oral supplements. In other words - diet may not be enough for you - you may need to take shots or sublingual form of B12 but your physician will direct you as to what is right for you. 

How do you figure out if you cant absorb it?

Does anyone else get like limb and body jerks?  Especially while trying to fall asleep?  I get them in my fingers a lot and then almost everywhere when trying to rest.  Very weird.

Just wanted to add this because it specifically mentions the autonomic system:

https://www.livescience.com/56121-brainwave-balancing-hirrem-migraines.html

3 minutes ago, WinterSown said:

It was not complicated to make one bit; I cannot handle a complicated recipe. I like this--making new things--it's satisfying. And this is healthy too, a little sweet, but still healthy. 

That’s a smart adjustment strategy! 

On 7/13/2018 at 10:21 PM, StayAtHomeMom said:

 

5 hours ago, WinterSown said:

I couldn't sleep last night so instead of tossing and turning or watching the tube I went into the kitchen and made something. I started to go through my old cookbooks to find any fast cake that I had all the ingredients. I had enough to make a small coffee cake but the recipe was not for baking it in the oven. The original recipe says to steam over water for two hours. Nope, I didn't do that, Instead I steamed it in my pressure cooker for an hour--half the time it would take on the stove. I never made a steamed bread or cake before so this certainly qualifies for my neurotherapy--I did something I've not done before. Yeah. I'm having a slice now with a mug of coffee. Steamed Date and Nut Cake is an excellent breakfast.

Awesome.  Looks great!

5 hours ago, Echo said:

@zerohours000 Take it as a good sign that you no longer need to hydrate or compression stockings etc. Two separate cardiologists told me that basically everything is up in the air and they have seen people spontaneously recover or get much, much better with time and without doing anything really. I don't believe that everyone who gets dysautonomia will have it for life. I think it's different for each individual and depends on so many factors. I would love to hear your experience with HIRREM if you ever give it a go because I don't live in the US/Canada region of the world so I doubt I would see it any time soon.  If you ever decide to look into vision therapy make sure you go for a neuro-optometrist/behavioural optometrist. They should be a properly trained and registered optometrist who specialises in vision therapy. It didn't necessarily help dysautonomia but I feel like my eyes get less tired now and I learned what kind of lenses I should be asking for when buying glasses which is a big help. (High index thin lenses are actually the crappiest when it comes to vision quality. Who knew.)

@EchoYes.  It really is up in the air right now.  Some things for me have gotten better (like sleep recently) but some have gotten slightly worse (like decreased stomach motility).  So it’s difficult to tell.  I’ll definitely let you know about HIRREM if I find a provider or purchase it outright.  I just know it’s available in November. 

14 minutes ago, Echo said:

Hi @Gerbera do you mind explaining what you mean by aerobic dance? Is it like a specific class you take or a specific style of dance?

Hi @zerohours000 To be honest my symptoms seem like POTS dysautonomia and the things that go with it minus the tachycardia. Though I'm sure I had transient POTS when it first started. (Heart rate went up by 29 bpm at cardiologist's office. Not 30 go figure.)  I apologise in advance but I would prefer to not go into detail because I don't really like talking about it and prefer to focus on healthy times. My diagnosis was not from a TTT but from an ECG. I apparently have "widespread T-wave inversion" upon standing which my cardiologist says is a sign of autonomic imbalance. For a long time I thought I had falling blood pressure when standing but after several measurements at the doctor's office on different occasions when I felt particularly "dizzy" it seems that that's not the case. It always comes back normal. (We take measurements lying down and then again after standing for a while.) Same as when I felt like I had sinus inflammation/congestion...went to the ENT, had a CT scan of sinuses and it came back crystal clear.  I have also done vision therapy and the wonderful behavioural optometrist who I did that with said he could tell there was some imbalance in the autonomic nervous system from the way my pupils were dilating during different tasks. (Pupil dilation is controlled by the autonomic nervous system which I didn't know until then!)

@EchoOkie doke.  No worries.  I had a “normal” TTT; had literally one day where I maybe had low BP and got shakes but it’s evened out and I’ve henceforth have not needed to hydrate a lot nor do I wear those compression stockings or do anything to compensate.  That’s interesting about the pupil dilation though.  I haven’t been to an optometrist since this all started.  Be curious as to what they’d say.  The HIRREM device will be out in November I was reading.  I might try and either get one or see if it’s offered as treatment in my state.  Sounds promising.  I haven’t found any good answers from doctors but something is up.

Thanks for the reply.

@EchoCan I ask what your symptoms are?  I don't have POTS, OH, NCS --- or any of the heart/syncope/orthostatic issues.  So I'm curious as to what others without those have for symptoms and what they've done for treatment?  Thanks in advance.  And I'll definitely look into this treatment as well.  I should also add that, as of yet, I do not have any kind of diagnosis.  In fact, I've been told by two neurologists that I do not have dysautonomia.  Which could very well be the case, I suppose.  I just don't know yet.    

19 hours ago, Shane said:

Extreme hypersensitivity and internal anxiety.  Glass drops, loud thunder I literally start crying. Hyperventilate easily, cold chills in my back all day but my body is warm. Heat is horribly uncomfortable, not that my system can't handle it seems to bring out my anxiety.  Fingers tremble for no reason at all except I am a bit keyed up about something. Its like any normal level of excitement sends my body sensations over the edge. And when I (say) come home from being out somewhere my body just crashes.

Sorry to hear that.  I know I get warm very quickly.  I was always a bit on the jumpy side but I’m not sure to the degree you’re describing.  Do you have any stomach issues?

23 minutes ago, Shane said:

Saw Dr. K in Hartford today. What a wonderful doctor, I highly recommend him to anyone in the Northeast that can reach him.

He says that likely the tests at BIDMC will come back negative (I kinda already assumed that given the chatter between the techs during the tests) that I don't have autonomic dysfunction, but I do have autonomic over-excitation likely due to chronic hypervigilence about my symptoms post my tick-borne illness last year.  Curiously he agrees that the symptoms are being triggered by an underlying anxiety I don't really have control of "mentally" much the same as PTSD.  He is recommending I get to a psychiatrist to see about meds to address this.  

I assume this means an SSRI/SNRI/Wellbutrin, etc.  Anyone care to offer up some recommendations what has worked for you?

That’s so interesting.  PTSD was brought up to me too.   May I ask what kind of symptoms you have?  I’m taking Celexa right now as a sort of experiment for myself.  I was on it before.  And can you PM me the doctor in Hartford?  Thx.

2 hours ago, WinterSown said:

My MIL slipped in her bathroom, fell into the tub and broke her hip.  She fell in the hospital and didn't tell anyone--her screws ripped out. She had more surgery and fell again and didn't  tell anyone again. More surgery. The family has arranged for an aide everyday, including weekends. We're hoping that if she falls in the evening she will tell us or the aide. She is walking better now but is in pain still. Sigh. 

Sorry to hear that.  Falling down is so tough on the elderly; like, probably a top ten injury.  Hope she’s comfortable at least 

24 minutes ago, WinterSown said:

If she still smoked we'd roll her a jay 😂 

LOL!  I do so miss it very much.  

1 hour ago, WinterSown said:

There is still a lot to be said for placebo effect. Stong belief can stimulate the body in wonderful ways. Hubs has been getting THC gummies for his 91yo mom. To me they are overpriced candy, does nothing for me, but MIL thinks she has less pain from them. So we bought her all the flavors. If she is happy then he's happy. #OverpricedWin

I can sort of vouch for THC.  The problem is this: with THC or CBD, you have the same issues wuth patient physiology; what works for one may not work for another and so forth.  I used to be a recreational smoker but there’s no way I can now.  Pure CBD oil works a bit but it depends on where you get it and who makes it. It’s regulated here in MA but frankly that doesn’t mean much.  CBD is marketed as another miracle substance because there are many in chronic pain for whom opioids might not be an option or simply it’s oversold as a miracle tonics used to, long ago.  It’s overpriced and still thoroughly under-regulated.  But I hope it’s helping your MIL

27 minutes ago, WinterSown said:

Some herbs are very helpful. I grow horehound and when I chew up some leaves my chest clears and I breathe easier--one of my symptoms is Sudden Onset Mucus (my own term) and the horehound does a great job keeping it under control. But I made a bad herb mistake about ten years ago. I had a stuffy nose and sinuses and a whopping headache. I don't know why I did this but I think in desparation you are not always thinking clearly.  I took some feverfew leaves and put one in each ear. In a moment my nose cleared and my headache vanished, I felt great. I started walking into the house, went about five feet and thought I was going to croak. Everything was shaky blinky haywire. I instictively removed the leaves from my ears and immediatley felt better. Just because it is natural doesn't mean it is safe. Two tiny leaves had enough drug to nearly send me to the hospital. Ugh. Lesson learned.

Yikes.  I mean.  There is something to the idea of “all natural” but not at the cellular level.  Like my aunt truly believes in naturopathic medicine.  But she is also not suffering like some on here suffer.  Her symptoms are somewhat like mine, minus the muscle twitches and burning.  She has sleep issues, stomach issues, and muscle cramping and pains.  She doesn’t have OI or POTS.  And I think she takes that for granted a bit as to the extent naturopathy is valid.

27 minutes ago, blizzard2014 said:

I still get the anti-big pharma friends online tell me I do not need meds. All I need is a low carb gluten free diet and herbs to control everything lol. I don't have the luxury of hating on big pharma anymore. Big pharma has been saving my life for over 6 years now. I wouldn't be alive without big pharma. I love the people who come on the diabetes forum touting a low carb diet as being a cure to reverse your diabetes lol. Sure, going low carb lowers your blood sugar, but it does not cure you. As soon as you go out and eat a few bigmac's, your blood sugar will be back up into the high 200's again. That is unless you use insulin like I do. The anti-depressants and giving everyone (even those with low heart attack risk) atorvastatin is sort of controversial, but not all of the meds we take for serious medical problems. 

I don’t have that luxury either.  Diet and exercise are good regardless.  But to be a cure-all or even a preventative cure-some is a wide net to cast overva systemic problem, which affects everyone differently.  When foodies subscribe to diet as a cure-all they entirely overlook industrial farming practices generally. For example, farms overfarm and the soil is depleted and thus are their crops are.  Yes, processed food is bad but unless one is growing their own food, it’s likely to be depleted as well.

4 minutes ago, WinterSown said:

I was at PT some weeks back and the woman next to me couldn't keep her nose in front of her own face and leans over to tell me that if I would put essential oil behind my ears I would get better and would not need my drugs or PT. She's telling me scented oil will replace exercise; all the while the DPT was right behind us. Holy Hannah! Later I told him he was better than oil behind ears and I got the best massage of my life. 

 

My aunt is into a lot of quackery.  She has issues with her ANS and keeps saying I need a “functional doctor.”  I was sad that Cleveland Clinic even added a functional medication sector.  Which to me is new age hokum.  I’m not saying it doesn’t have some benefit but it’s not science and it’s not medicine.