Bergbrow

You’re so right. Dysfunctional ANS affects everything should be a banner on my wall.

No stomach upset, no nausea unless I force myself to continue eating. Might be neuro but odd that water goes down fine but anything more substantial, including soup requires an internal pep talk.

I’ve had that aversion to food. I know I’m hungry but by the 1st bite it doesn’t matter savory or sweet, I almost can’t get it down. I try to chew it so small that I can drink it down with water. I look at my plate and I’m trying to convince myself to eat it. I just can’t get myself to swallow and sometimes have to take the food out of my mouth. Aversion is the right word for me too. I have not figured out why it starts. This has made my weight drop down by as much as 30lbs (which I need those 30lbs). It resolves itself usually when I finally get some stabilization of my symptoms. But, sorry I don’t have an answer for you on how to avoid or resolve. I’ve not eaten some of my favorite foods which should be the easiest things to eat.

@keenly Im also concerned about long term use of diphenhydramine because of the research stating cognitive decline with long term use. Because of this, I avoid this class of antihistamine for long use. I also have balance issues and I know balance takes a lot of brain energy to keep my body upright and all. Don’t know if a different class will work for you but if you are noticing something cognitively, maybe try a different class of histamine. You can get more details by searching internet but here’s a clip and a link from Cleveland Clinic. I’ve read similar data in other references as well. Do antihistamines cause dementia?Long term use of some antihistamines may increase your risk of dementia. Diphenhydramine (Benadryl®) blocks the effects of a neurotransmitter called acetylcholine. This neurotransmitter is vital for memory and learning. Diphenhydramine increased the risk of dementia by 54% in one 3,000 patient study followed for seven years. https://my.clevelandclinic.org/health/drugs/21223-antihistamines

@Pistol you hit the nail on the head, unfortunately I have been in a flared stage for months and months. We’ve been trying unsuccessfully to tamp down my system. Avoiding overstimulation and rest, when I CAN actually can go to sleep, are definitely a priority. But like you said when flared, adrenaline surges and other symptoms are more difficult to manage.

This happens every night to me multiple times overnight, sometimes every hour I’m awakened by it, but definitely 3-4 hours after going to bed. Doctors dont know why and so i also suffer every night like this. No panic attacks just heart pounding and racing, sweating so i need to turn on a fan no matter how cold the room. Then when the surges stop i get very cold and need extra blankets. This leads to an awful night of sleep day in and day out. I dont have a solution for you as everything I've tried does not work. Things the doctors try through medication also doesn't work. I too dont have diabetes. But my autonomic dysfunction is also not well managed, so we’re still trying to settle the rest of my symptoms as well.

This is me too. @Pistol your morning energy is what I wish for when my insomnia isn’t constant. I CAN have more energy in the mornings but definitely not when I haven’t been sleeping well. But regardless, as the day progresses, I also decline. At some point in the afternoon, I am also bottoming out. By the evening, just like clockwork I’m extremely symptomatic. I’ve tried switching up my activities (or lack thereof), food/drinks, amounts/times but evenings are always a symptomatic problem summer, winter, doesn’t matter. The symptoms in the evenings are the hardest to control.

Oftentimes I’ve been told by multiple neurologists that what you described just doesn’t happen like that. But what you described is almost exactly what happens to me too. The only difference is that I’m completely unconscious no shaking but my husband also experienced the horror and fear of bringing me back multiple times too. Same thing, I’m asleep, feel very wrong, very awful and strange, I get up slowly thinking I need to vomit or pee or bowel movement or all of the above. Get out of bed to go to the bathroom take 2 steps, buzzing, splotches and then pass out, hit the floor. The thud wakes up my husband(the time between splotches and oh crap I need to find a soft surface is too short). Turns out I didn’t need the bathroom at all since no evacuations occurred while I was passed out. So when this actually happens to both you and I (I’m sure others), and doctors say that’s not possible, then the manner of care we get is crap. They cannot accept that the pre-syncopal feeling occurs while laying down and it’s that awful feeling that makes us get out of bed then pass out. When I see a new doc that can’t even accept my syncopal episodes, I know to move on because that’s only 1 symptom in my list of multiple dysautonomia symptoms that must be addressed.

I have that type in a different brand. It’s one of the best coping tools I have. Mine has straps that I use to carry it as a backpack since it folds like a puck. I keep it in the car. Anytime I think I will need to stand and a chair might be scarce, I put it on my back. When I need to sit I just pop it out. Mine isn’t heavy and sometimes I wear it under a backpack purse as well so I can be hands free for my cane.

@Baileeand @TomaszI have had months of gaze stabilization and vestibular rehab related to both triggers you’ve mentioned. Turning my head even once left or right increased my dizziness instantly. Dizziness levels varied depending on my current level of flare, I’m anywhere between loopy to pass out. It wasn’t just the head turn but also eyes tracking that takes me down. This symptom makes watching tv difficult and triggering (sports, forget it), driving, people or animals moving around make me dizzy because I have trouble tracking. My dysautonomia was cause by a brain injury. @TomaszI could have written your post word-for-word. My eyes seem to struggle to focus also in low light as well as changing light and when moving. Takes me a minute to feel like my pupils are cooperating, sometimes they just cannot set. Like a camera constantly trying to focus but still take a crappy picture bc it never set. Or everything else is floating like you said Tomasz and I need things to stop moving. I credit multiple vision and vestibular therapy exercises for getting me to my current state although I’m still truly diminished, I would have been so much more dysfunctional without it.

@MailiSorry to hear about your struggles and the lack of care from your doctors. I too had a 2-week period where I felt I couldn’t get food down my throat. Water/liquid was fine, any solids would have to challenge the gag-reflex and everything that was chewed never made it down and had to be spit out. No throat obstructions, just couldn’t even force it down, barely ate at all and lost almost 15lbs in less than 2 weeks. I could handle small amounts of V8, broth/liquified soups, vitamin waters, couldn’t handle Ensure. My doctor fortunately was fully invested bc the rapid weight loss also caused serious concern. I tell this long story to help you get confirmation that what happened to you is real. When you said your doc said it was anxiety, that bothered me too. Some doctors, smh. We were never able to determine the trigger or how it resolved. You mentioned that your symptoms had been worsening and uncontrolled prior to the gagging. I am significantly debilitated this summer so many of my symptoms are crushing me. This for now is added to the list of my “symptoms”. Eventually I started to be able to swallow solids again. Why? We have no clue. (Unfortunately)gained all the weight back but we’re still unclear what triggered it. Hope you can find a solution. Sorry you’re struggling with this, I never want to go through that again.

I too get marathon flares that last for months. I totally felt your comment about them “getting to you mentally”. They’re debilitating, constant and seemingly unending, plus night after night of insomnia, I hate these flares too. Day after day for months and months is misery. I don’t have any advice to give for relief as what I’ve tried for relief does not always work since my triggers have not been consistent. Just hang in there and put extra focus on the moments during the day when you DO feel ok. After a while, you will make it through this cycle and hopefully the next will be better.

I’ve used Ivrabadine which seemed to successfully kept my heart rate from erratically spiking. I’m usually uncontrolled high HR/low BP (resting heart rate varies very low-high). On Ivrabadine it’s one of the few times I actually could not FEEL my heart beating (heart rates were within normal person’s range though). I even kept checking my chest bc I’m so used to feeling and hearing the constant thumps. But although I felt good heart-wise, I had a bad allergic reaction of itchy skin so bad i even would scratch all night, face especially. My doc took me off of it after 2 months. I think it was working so I miss the positive I got from it. It did make me feel a little better than the other channel blockers but we couldn’t control the itching. Once I stopped the Ivrabadine the itching stopped, pounding returned. He put me back on my old meds.

I have this eyes/vision problem as well. Docs thought it was related to my brain injury (which led to my dysautonomia). Maybe it’s a combination of both. Sometimes it’s like continually trying to focus while I’m the only one spinning. Even walking through something as big as a doorway has caused me many injuries. This amount of constant concentration wears my eyes down and wears my brain out. I’ve been seeing a neuro-ophthalmologist where she prescribed wearing prisms and visual rehab. I still struggle with tracking, blurring, lights and movement but the triggering of symptoms seemed to have been tamped down with the prisms since my eyes now need less effort to to keep things in focus.

@MikeOI had to laugh at the Whooshing comment. I have been at that exact moment, with that exact word and yea, the doc didn’t get it😂thanks for that reminder that these sensations are REAL. I’ve been getting better at trying to put what is happening to me into doctor speak to explain what’s been going on but sometimes saying Whooshing is more accurate. Your doc congratulating you on improvement while also saying he doesn’t understand and you calling it progress is very relatable. I think we are so desperate for any amount of relief and remedies we will take any form of progress even if it’s not clear why it works.