Amyschi

So sorry, Ida.  I agree that if you are unable to sit up, it sounds like you do certainly need and deserve some help.  I have a husband fortunately, but he is gone 90% of the time, and I have often thought that I wish I had an extra bedroom where I could offer maybe the right person free room and board in exchange for just being around some of the time.  In  addition to your friend who is coming by and maybe more additional arranged help, as others have said, would that be something that is possible for you, if that is even something you would want to consider?  Best wishes to you. 

Hi MTR, I just came across your posts to this point, as I just posted a similar question today and happened to see yours.  Sorry for all you are going through, but it is amazing, as we could be twins.  The only thing different is, instead of sweats, I get severe chills for hours down my arms and legs with an inability to get warm.  I just wanted to mention, and all are probably aware of this, that I read you can often have negative antibodies to the Sjrogren's; that the only definitive way to diagnosis it is through a lip biopsy.    I suspect you are younger than I (at 60), so it is a little scarier as one gets older, blaming everything on the dysautonomia, and I can relate the fear and wondering whether to go to ER only because you feel so bad.   Since we are so similar, I was wondering if you also notice severe weakness with almost an inability to get out of bed when this happens, and also do you have urinary frequency?  Oddly, I have just started to notice this symptom.  Again, what to blame on the dysauto.   I admire you and everyone for trying the different medications.  Good luck, and maybe post back if you find the Lexapro helps this crazy circle of symptoms.  TY.

Thank you, Kaci, for explaining, and best wishes.

Hi Kaci,  Wondering the same, I've read that Gatorade Zero is the best, but I think I was meant to see your post today, as had a very bad night.  I see you have hyperPOTS, I believe I have the same, and I am wondering what you mean by "spinal shocks?"  Are they like myoclonic jerks?  I am glad for the Gatorade tip at night.  Can I ask if you (or anyone), especially those with neuropathy, wake up with internal shaking, anxiety, tachycardia both lying in bed and especially upon getting up to use the BR, and severe burning/paresthesias in arms and legs, and severe chills.    I get this in "attack,s," not every night, and it will last throughout most of the following day.   Was so bad last night that honestly think I must be sick, or there is something else going on.   If anyone else has these attacks, would appreciate knowing.  TY.

Thanks for this good basic recipe - you are right, so much easier on the stomach, I think, than sure salt tablets, as it's diluted.  Hope they bring the Zantac back soon!

Also, can I ask what electrolyte drink you use that you can tolerate with the GI issues? TY.

Thanks - yes, too bad the Zantac was withdrawn if that was controlling things for you.  Hopefully they will bring it back or maybe you can switch to another H2?  I'm surprised if you never had to use a PPI?  I've read that the H2 blockers become ineffective after a few weeks?  Maybe you took it just during flares?  Appreciate your insight. 

Thank you for this insight, Random!  I agree.  Since I've been in a severe stomach flare, POTS symptoms/weakness are much worse.   Even increases palpitations and dizziness, just a continuous cycle.   Can I ask how you treat your GERD?  TY,.

Thank you so much for this info, Pistol!   I appreciate knowing what has worked for you.   I think it is related to the dysautonomia too.  I was just reading something about "chronic abdominal pain syndrome," which they are calling a functional GI problem due to brain hypersensitivy, something akin to fibromyalgia.  Interesting.  Also similar to "functional dyspepsia."   It probably all goes back to the nervous system.  So glad you are doing  better on your regimen.  I am going to need to get on this, I know, even with the side effects.  It just is not possible to treat it when it is that severe without intervention.    Take care!

So sorry so many have GI issues.  Most of you talk of nausea, but I wonder if anyone has extreme burning stomach and GERD symptoms.  Sometimes I wonder too if this dyspepsia is related to dysautonomia or just a separate GI condition.  I tend to think everything is related maybe too often too, but I was diagnosed with GERD after dysautonomia.    IIn any case, if anyone has this, do you have anything that has worked for you?  I have tried it all, ginger, chamomile, antacids, and have tried H2 blockers, but they make me even more dizzy and worsen tachycardia (hard to believe, I know, as most people tolerate these just fine), but I have a separate chronic vestibular condition, and any meds seem to worsen the dizziness, so kind of up the creek there, but am getting kind of desperate, as it has worsened to the point where I am having trouble eating, and am very thin.  Any suggestions at all appreciated.  I know I need to return to my GI doctor.  Thank you.

Hi Debbie Rose - I happened to see your recent posting on this older thread, so thought I would ask you - I chuckled when you said you were past the age of hot flashes (me too, I'm 59), so I was curious being that you were recently diagnosed in 2015 with your NCS dysautonomia.  My history is one of chronic dizziness since age of 23, but I didn't develop dysautonomia symptoms until my early 50s;  therefore, sometimes I wonder if it could be the correct diagnosis, or whether the dizziness was just the first stages of it.   So my question, did you first develop the dysautonomia later on or were you younger when you had symptoms and just not diagnosed?  Strange that I also have the fibromyalgia - I think these things go together.   Thanks for any input, or maybe any "older folk" can chime in.  I feel so sorry for younger people who have these conditions in the prime of life. 

Hello and welcome!  I am sorry you are having these problems and seeking a definitive diagnosis.  I hear you about the dizziness.   With the associated climbs in your heart rate, it does sound like it could be POTS/dysautonomia, but I am just curious as to whether you have the dizziness all the time even without a high heart rate.   This is my main problem.   I can have times, in fact most of the time, without tachycardia on standing, or a problem with abnormal blood pressure, but am dizzy anytime I am upright or try to do any activity.      Wish I could comment on the connection with gluten sensitivity, don't know, but since they don't know what causes POTS and these issues, whether or not it is autoimmune, it certainly is a possibility.   Smart to ask for a ferritin level.   That usually isn't done along with a standard blood count, so a good idea.   Good luck to you in finding answers.   As others here on the forum will certainly tell you, if the problems continue, it would be good to see a doctor who is familiar with dysautonomia issues.   Take care -

So sorry that all of you are suffering.  Sad to know, but "glad" not to be alone in these struggles.   Abe, just wanted to mention about the pain in your feet extending upwards.   Maybe check with your doctor about doing an EMG/nerve conduction study to rule out neuropathy in addition to your back issues.  I have severe muscle pain from what I believe to be fibromyalgia (another common co-morbidity on which they are doing a lot of research on connections to the autonomic nervous system), but I now have stabbing pain and burning in the feet, and when I was tested for dysautonomia, an EMG did show polyneuropathy  (possibly from autonomic neuropathy??).   If you are diagnosed with POTS/dysautonomia, there may be other issues going on as part of that syndrome?i

I am always very curious to hear of others' experiences with dizziness.   I started with chronic dizziness after a viral illness at age 23.   It was not until around age 53 or so that I developed the dysautonomia/chronic fatigue symptoms.   Vtpixie, I can certainly relate.   The dizziness and lack of balance is overwhelming and completely limits functioning, even at times I don't have any POTS or dysautonomia symptoms.   I have gone in the last five years to being somewhat functional to now not being able to leave the house without a wheelchair due to the amount of dizziness.   If I drive even a mile, I will not be able to walk at all when I get out of the car.    It's like an over-the-top abnormal motion sensitivity that would not be explained by the usual POTS mechanism.    I believe there is much more to these autonomic problems than just the symptoms occurring on standing, which is bad enough!   It sounds like from what others have posted here that there is also a strong vestibular component that is either a result of the dysautonomia (altered blood flow perhaps?) or perhaps that an inner ear hypofunction is a co-morbid condition that is common with the dysautonomias.    Also, for anyone that also has cervical arthritis and/or stenosis, it seems like there is a definite connection to that, either maybe affecting blood flow to the brain or disrupting signals to the vestibular system and/or stimulating the autonomic system.    There is a lot of "controversy" in the literature about all this, but I believe it strongly just from my own experience only.    If anyone is interested in the connections, check out videos on YouTube by Dr. Andrew Holman; very interesting on how all these conditions are interconnected.    I know all this has been brought up in the forum here at different times.    Abe, it is very interesting to me how your symptoms worsened or started after your back injury.   I have come across stories of people who have developed severe episodes of tachycardia after a car injury with trauma to the back, when they were perfectly normal before.   There is theory that trauma or illness can spark dysautonomia.  

I would be very interested to know of fellow sufferers who have this constant dizziness, as to whether or not your doctors did vestibular testing along with autonomic testing, and what the results were.   I asked my neurologist if he would do ear testing, to which he agreed, but I have not been able to follow through with it yet.  

Good luck to everyone, either in your search for answers or help in finding relief!    Prayers to all of you - no one but a fellow sufferer knows how debilitating trying to live with these conditions is, but also I am so grateful for anything else I don't have on top of it.   That is what gets me through each day.

Do you have to use these devices paired with an app from another device, or do they work just upon your wrist for HR?  Have seen reports that they are not that accurate and have put off buying one; the problem with the pulse oximeters is that if your finger is freezing cold, they will not register.  A wrist monitor would be good in that regard.   

Thanks, Kaitlyn.  Please do keep us updated!

i Kaitlyn - Thanks for updating us on your appointment.  I'm sure you were glad you had the opportunity to confer with Dr. Heffez..   Did he do an upright MRI then?   I'm sorry to hear that you do have confirmation on the Chiari, and now have the decision to make, especially since you would be taking the gamble as to whether it will help, as you said .   One would think that if you definitely have brainstem compression, it may be a big piece of the puzzle, and it certainly would make you lean toward the surgery if there was a good chance of feeling better.  That would be such a miracle for you.   Not an easy decision, though, I know.  I will certainly be thinking of you as you make a decision and, if you do, please do let us know.   Don't know if there is a Chiari and such forum, but maybe you could get some further info there as far as success stories!

So sorry, Sarah, that it turned to bradycardia.  I do hope the reduction in dose will bring it back up.  I have noticed bradycardia during the overnight hours and early mornings even without being on any medication, so maybe it was too much for you.   A 37 is low, though; mine has only been down to the high 40's during those times.   I was curious whether bradycardia is also common with dysautonomia; didn't know it was,  Just another part of the dysregulation, I guess.    Best of luck, and please do let us know what happens; hope you will not need the implant.  

Hi Sarah,

Sorry, I just saw this response.  Thank you for the great info.   How are you doing with the Ivabradine now?  I hope it is still continuing to help!.  

Thanks for letting us know, haugr.  Glad that MCAD was negative for you at least.   That's great that the increase in clonidine has helped; maybe it is an autonomic thing.  Hang in there!

Sorry to hear, Kaitlyn, that the collar isn't helping, but good luck finding further insight at your appointment.  I admire you sticking with it - I didn't know you had to wear it while sleeping, wow!    I have found myself when trying to just wear a soft cervical collar for a short time, to see if it would help, it actually worsened things, so just don't know.   I think if one has to wear a collar after an injury, for example, where they don't want the neck to move, maybe it helps, but if you have chronic neck/headache problems, maybe not so much?    Also to you Kim in your travels and for finding some further answers.   I admire the determination both of you have in going the distance to seek help!   Take care.

Thank you, Kaitlyn, for your corroboration.  I agree it is certainly a catch-22; you want to stay in bed due to feeling poorly, but then it causes more deconditioning, and then it is even harder to get up and start moving all over again.   I'm glad the beta-blocker is at least helping the tachycardia, and also that the Mestinon helps.  I totally agree that the dizziness can be separate from the dysautonomia; will be very interested in what, if anything, the collar does for you, and/or what your doctor says concerning the Chiari, if you don't mind updating us!    

Kim, so sorry you are experiencing this too to such a degree.   Your description, unfortunately, of dizziness on turning your head and in different positions, basically just upon movement trying to do any activity, sounds so familiar - I couldn't have explained it better.   That becomes the question, again, as to whether the dizziness and/or headache is part of the general dysautonomia/blood flow regulation problems or from Chiari, neck problems, or even inner ear problems.  Trying to decipher it all!  I would definitely mention it to your doctor, to maybe check if other problems are going on in addition to your PAF.   From what I have read, even vestibular problems are common with dysautonomia, so maybe they are just co-morbid conditions; thus, the reason for so much disabling dizziness even when we are not necessarily having dysautonomia symptoms.   I know myself, I can be not feeling POTsy, but then go into the bathroom to do something with my head tilted back, and will become extremely faint; in my case I have neck stenosis/arthritis, so believe that to be the primary problem.  Thus, since you are having similar trouble when turning your head, hope you can check this out further.   One has to wonder about general vestibular problems too when any movement seems to cause dizziness.   It seems so many here on the forum are dealing with multiple co-morbidities, which is why it is so hard to figure it all out.  Good luck in your search for further answers, and to all out there.

Thank you so much, Kaitlyn, for the further information.  Interesting that your Chiari was able to be seen on your "flat MRI."  I think sometimes radiologists could just miss it possibly, too, if it is small.   I sincerely believe that also, that you could have a small defect, but still be symptomatic from it.   Everybody is different,. and doctors may tend to generalize as to what are normal symptom patterns.   I always remember my mom's allergy doctor telling her that you can be mildly allergic and have bad symptoms, or be highly allergic and not have many symptoms at all.   Doesn't pertain to this, of course, but you get the idea.   But with you dealing with other conditions, that is the problem, not knowing what is causing what - it is so confusing, and I'm glad you are checking it out further.  Maybe it will give you a further much needed piece to the puzzle.   I can just imagine how hard the hard collar is to wear, as even the "soft" ones are hard to use.   I would be very interested to know if it ends up helping you.   I have the same problem on movement of the neck causing dizziness and faintness, and these are at times that I am not tachycardic, so you have to wonder if it is a totally separate thing.  I'm afraid, unfortunately, that we may never know for sure.   Can I ask you a question too?  (or any other forum members who could chime in!), whether you ever get up at night and immediately after on trying to walk, get very dizzy, weak and tachycardic?   I got this last night rather severely, even though I have had it many times before, just not that severe.    It is just my feeling, but I think holding the neck in one position while sleeping "sets things off."    

I just wonder, too, how many other forum members have neck issues and/or Chiari and have noticed dysautonomia "appear" later in life, being that POTS is usually diagnosed much younger.   If indeed these conditions can be causative, it would make sense that it can become more pronounced as we get older.  

I would have made a good polster, huh?  Sorry.   I'm sure everyone can relate, with the election calls upon us!  

Green, Wow, thank you for this great information, and you know, I didn't mention that in my original question, but I do have concern about using infrared heat with dysautonomia,, as any kind of heat will sometimes make things worse.   But I seem to do better with it as I am lying down while using it, and I think the problem with trying to exercise or take a hot shower is that one is usually upright.    But that is a good point for others to consider.   I guess one needs to try it to know how they react.   I only use it because of severe fibromyalgia pain, trying not to take pain medication due to effects.  I'm sorry you are feeling worse from your exercise.  I admire you just being able to run three miles, and hope you are feeling better.  

Hi Kaitlyn,

Glad your doctor is re-evaluating this for you.   I wasn't sure what a Vista collar was, so I looked it up.   I certainly believe that in my case at least, the problems in the neck are definitely contributing, so would be very interested to know how you make out.   I have on my own tried some cheaper foam neck collars just to see if this would help.  I have found that holding the neck immobile seemed to make the dizziness worse, but the Vista collar is certainly much better and hopefully may help clarify things for you.   I also have cervical stenosis issues, and, for example, yesterday I accidentually "jerked" my back and neck, and today the dizziness is very severe and just more POTsy.   Just curious as to when you had your first Chiari testing, was it an upright MRI?  I ruled negative for Chiari on MRI, but wonder if a regular lying MRI will show a more mild case?   I hope it turns out not to be Chiari for you, as I know the thought of decompression surgery is scary, but sometimes I wonder if it would be worth going through surgery to have relief of all our symptoms.  Please do let us know if you feel inclined, and good luck.  I know, I have read some on Dr. Heffez - wow, so glad you are able to see him!

Glad to hear, Haurg, that your doctor will be checking it.   Please let us know what happens!  Take care.