Amyschi

Thanks, Sarah. Funny, but I notice that too - that symptoms are better toward evening, and then eating seems to be a little easier. Interesting theory about the low blood flow - that is kind of what I am thinking; whether the appetite itself can be influenced by the ANS and if others have noticed this as being part of dysautonomia?

Glad the IV fluids help you! Do you have to go to a center for this after the doctor orders? I'm wondering if they would order :just: for loss of appetite if your vitals are maybe not severe enough to necessarily warrant it? I'm more interested in the sensation here - I suffer from digestive upset and it is always hard to eat, but I have always been able to. But this is more of an "aversion", as I said - just curious if anyone relates to that in specific. Thank you!

Hello. Has anyone experienced just an extreme loss of appetite when symptomatic? I am not talking about having discomfort from digestive issues. I don't have gastroparesis, but do suffer from chronic reflux and dyspepsia. With that, even if I feel sick, I can continue to eat. This is like just a general aversion to food, where just the thought of starting to eat is difficult and has to be forced. I have had this off and on over several years, but this seems more persistent. I imagine I am much older than most of you, will be turning 65, and this is concerning for something more going on, I know. But just wondered if anyone has experienced it, and if so, gotten any recommendation or have found something that helps. It is a real concern, as weight is already low. Thanks much.

Thank you so much for this info - very interesting.

Can I ask what degree of symptoms necessitates IV fluids? I'm sure its up to your individual doctors, but just curious what the criteria might be? I just looked it up, and one article said that daily symptoms alone would suggest it; seems like everyone would be getting it in that case? TY.

Hello, its been a month, so hopefully you have found an answer or are feeling better. I don't want to put out any incorrect ideas, but I just wanted to ask if you just recently started the stomach meds, or have you been taking them awhile? The reason I ask is because I have been doing research on what are the easiest H2 blockers or PPI to take. I have surprisingly come across people listing some odd side effects to these types of drugs. I'm sure its not a side effect, but just wanted to throw it out there. Hope you are doing better.

Hello. I am hoping someone may be able to relate to this, as its a new symptom to me and a little frightening. I have been in somewhat of a flare, i.e. increased orthostatic symptoms and weakness, but suddenly started having pounding heart whenever I drink anything, sometimes with eating. It is definitely related to contact with the esophagus. I do have rather severe acid reflux, so don't know if it could be related to this, but you would think that would happen after the food has reached the stomach and refluxx ensues. It seems to disappear as soon as the substance passes if I pause in between or stop. Very strange. Just cannot find anything on this. It will be interesting to see if it clears if the flare improves, hopefully. Thank you. .

Thank you. I'm assuming you mean specifically the chin numbness? Yes, unfortunately doing too much makes everything worse. Good luck.

Specifically the chin numbness, Kim? I read that it can be caused by autoimmune issues, i.e MS, Sjrogren's etc,, so maybe your doctor is assuming it may be secondary to your autoimmune? Good to know that he is not concerned about it, though. Thank you.

Sorry, no fun either. I guess that is better than the chin numbness, as the dangerous part of that is that cancers extend to the mandible and that is what causes the mental neuropathy, i.e. chin numbness, which is the worrisome sign. No numbness is pleasant, but if in other parts of the face, not as concerning. Thanks.

I know there are a lot of past entries probably dealing with numbness, but thought I would just put out a new question here. I'm hoping someone maybe can relate to this to ease my mind. Has anyone had onset of a feeling of numbness, or mostly a tingling feeling, in the chin and lip area? I looked this up online to see if I could relate it to the neuropathy that I have throughout the extremities with tingling sensation and burning all over). But I got really concerned because this is referred to as "numb chin syndrome" and is usually a marker or sign of metastatic cancer from somewhere. That is the last thing I was expecting. If I didn't have the constant worsening burning and paresthesias all over I would be extremely cioncerned, but would be interested to know if anyone with peripheral neuropathy, SFN, or autonomic neuropathy has ever experienced this. Could also be a fibro thing? I read that it could occur from a process such as MS, sarcoidosis, or Sjrogren's, so there is some logic there I guess with dysautoonomia. I know I need to check it out, but would appreciate anyone's experience with this. Thank you.

Hi - know this post has been awhile, but did you ever talk to the doctor about this? I get this in attacks, usually if I have done something more physical - keep awakening with tachycardia, internal shaking, muscles jerking, anxiety and extreme chills. I believe its possibly adrenaline surges. I've also seen people say this is related to adrenal fatigue, so that is why I am curious as to the endocrinologist's opinion - I know there is the whole thing with dysautonomia as a result of disruption of the HPA axis? ? Thanks.

Thanks so much, Pistol. That is a logical explanation. Interesting too about not being able to sleep due to the same. I always thought of that as a trigger, but you are right, probably all a continuous cycle. It is amazing that you said you feel like you are ill with a flu afterward - I am exactly the same, and sometimes wonder if it is an illness, but it seemingly happens too often for that. You are always so helpful and knowledgeable (such a help to all of us!), Take care. .

Pistol. if you see this! (couldn't get the quote to work, sorry), regarding your thoughts on adrenaline release. Do the doctors know whether the exertion/stimulation actually causes overstimulation of the ANS and subsequent increased adrenaline? I get this reaction only during sleep if I have done something I know is a trigger, for about a year and definitely getting worse. I also feel extreme chills and what seems to be paresthesias (ie chilling throughout the arms and legs, yet a burning sensation at the same time (Dx of neuropathy, but don't know if it is small fiber in addition). Then the next day always a flare and feeling worse, and almost like a flu or virus, with continued chills all day. I notice this will strangely also happen if I go to bed later and then can't get to sleep. It's almost like the lack of sleep acts as a trigger. This is also a really strange thing I've just started experiencing too, and wonder if anyone else has it - I see visual hallucinations (always a large spider crawling on the wall that looks like a tarantula! So very strange and scary. This freaked me out, so I looked it up, and strangely there is a connection with dysautonomia. Think maybe we all could relax more if we knew it was all dysautonima-related. Same thing as hippopotsamus (love that name!), when getting up to the BR or especially when startled from sleep. My personal belief is that our nervous systems are so sensitive, that when they get overworked for us or startled, we react with these spells, but it is just a theory, and I know all of you are wondering the same thing as to the cause. Thank you.

Excellent thought, Swinkie. I have actually taken my blood sugar with my husband's machine to rule that out. Thanks for the suggestion.

Thanks Chiaea. This is interesting that it may stem from migraine, but I'm glad the med helps you. I don't get migraine, but I do have chronic longstanding chronic dizziness.issues, and have often wondered if that could be vestibular migraine, so that is something to keep in mind. Good luck to you.

Thanks and so sorry you get this too. I know the feeling, it makes you weak so that it is hard to get up to burn off the adrenaline, if that is what it is. Hang in there.

Hi all. Just wondering if anyone, maybe especially those with hyperpots, has this constellation of symptoms? For the past several months I have been having episodes of waking suddenly from sleep, like a startle, then noticing a short burst of tachycardia, a severe "internal tremor," ongoing severe feeling of chills that are more like cold paresthesias running down the arms and legs, but oddly, feeling of body/skin burning all over. I do have evidence of large fiber polyneuropathy on EMG/NCS, but have not been tested for small fiber, which I strongly suspect. This is generally accompanied though the following day by excessive weakness; just a worsening of symptoms from baseline. I am thinking this is coming from adrenaline surge, but just don't know. I am not on any medications. Thank you.

Thanks Pistol! So sorry you experience this also, but glad to know it can be part of the picture. I totally agree that the trigger creates the storm of symptoms, but it seems that the more symptoms you are trying to juggle and the intensity of those symptoms, the worse the flare. Like you were saying with your seizures and/or fainting spells - so glad you are doing better with that aspect at least with the IV fluids. Take care.

Can I ask when you get these POTS flares and probable associated presyncopal or hypoperfusion symptoms, are they accompanied by extreme weakness way over your baseline? Sometimes when this happens, I literally feel like it could be an emergency or I may be dying, that there must be something else happening . But I am 61 (did not develop dysautonomia symptoms that were more severe until my early 50s; had chronic dizziness following a virus for 35 plus years and CFS/fibromyalgia). I know that sounds dramatic, but it is to that intensity, almost unable to get out of bed and walk. However because it has passed several times, figure it must be part of the dysautonomia picture. I personally think that many symptoms occurring together somehow must create the "perfect storm?" Unfortunately, I know that most of you who deal with this are younger. Scared to death too of the COVID, or any virus for that matter. Can't imagine dealing with that on top of the issues we already have. Praying for all at this time.

Hi Lisa. Just wondering if you are using an elevated wedge or bed, or just using pillows to elevate? I have cervical arthritis/stenosis and note I have to be very careful in the positioning of my neck or will have the same symptoms. It actually is quite a trick because I also have severe acid rreflux and, for that reason, also have to be elevated. What I have found is to use a very low-profile pillow (like one inch) so that the neck isn't flexed at all. Do you have underlying neck issues? If unknown, maybe something you want to check , as if you just started to notice the headaches and dizziness along with a stiff neck, the new position may definitely be contributory. I also have chronic dizziness for many years, and as the neck worsened, so did the dizziness and dysautonomia symptoms. Also, I know they say to lie elevated to conserve volume, but interestingly, I have found the opposite to be true; increased need to urinate at night. All I can figure is that it's the more "upright" position. Go figure! Hope you can work it out, and good luck.

Thanks so much. Interesting. So glad you are doing better with this. Can I ask why you are taking the prednisone?

Got it, Pistol - thanks for clarifying! Glad it helps your IC.

TY for your reply above, MTR. I didn't realize the lip biopsy could be dangerous, but with so many issues going on, I can certainly understand that. So sorry you have had so many obstacles along the way, but I admire your very good attitude and willingness to keep trying different things to improve over the years. I was interested in your comment just above about the move theater seats reclining, as I am confused on this aspect. I really have noticed the nocturia, which I never used to have, when I started sleeping on an incline due to acid reflux. I can't figure this out, as I thought I read they encourage those with dysautonomia to sleep that way to prevent fluid loss and subsequent dehydration in the morning? Interesting what Pistol and you have said about the Paleo diet too - may be worth trying. I hope your infection improves so you can take a shot again with the Lexapro - - I've read that Lexapro is one of the easiest ones to tolerate.

Just wondering if you, or anyone, breathes through their mouth when they feel like this? Odd question, I know. I notice when I am more symptomatic HR wise and generally more weak, that I will be breathing with my mouth open and don't even realize it until it completely dries out, so I am doing it involuntarily. This is only while I am sitting or laying upright though. Maybe it has something to do with blood flow and oxygen levels? I have tested O2 sats during this, though, out of curiosity, and not generally low.