Patrick

I have a lot of the same symptoms you do. Mainly brain fog/lightheadedness and I also have the visual problems. A few years ago, I went to a neuro-ophthalmologist who diagnosed me with visual vertigo (also know as shopping cart syndrome). Basically, it's a disconnect between the eyes and brain and causes dizziness/lightheadedness when in certain complex environments (such as the grocery store). Unfortunately, there's no cure and the drug he prescribed to me didn't work (Diamox), so I have to live with it. I also have spinal problems - cervical myelopathy that causes imbalance, unsteady gait, numbness, etc. My spine surgeon tells me that my autonomic problems are not being caused by my spinal compression, but I'm not sure I necessarily believe that's correct as I've read a few places that cervical stenosis can cause autonomic issues. According to my spinal surgeon, I need surgery, but I'm putting that off as long as possible. So, like you, I've got different problems and different doctors telling me different things. I don't have POTS, but do have issues with my heart rate going from bradycardia to tachycardia upon standing. I have an abnormally low heart rate upon resting (45-50) which jumps into the low 100's upon standing - and then drops back down within a few minutes. There are no autonomic specialists near me and the one I was going to travel to isn't see anyone during the pandemic, so no real answers yet. My cardiologist is pretty worthless when it comes to these issues.

Look up Cervical Stenosis with Myelopathy. Myelopathy are symptoms caused by compression of the cervical spinal chord. A lot of your symptoms (numbness, weakness, tingling, balance, gait issues) are all symptoms of Myelopathy. I've been searching for years for answers to my problems and think I've finally found the reason. I think I remember reading a thread on this website about Cervical Stenosis and Pots and have read at least one article linking the two. I'm having a follow up appointment with my spine surgeon to see if he thinks my dysautonomia problem is related to my spine problem. It's possible - even though your neurologist says no. My neurologist didn't make the connection, but she knew enough after looking at the MRI to send me to a spine doctor - who told me I have Myelopathy. See if you can get a referral from you neurologist. Spinal chord compression is nothing to be ignored as bad things can happen if you let it get too far advanced. Good luck.

I never knew what my problem was until I got my Apple watch last Fall. I always knew I felt "weird" when I stood up and sometimes felt faint, but didn't know what was happening until I noticed my heart rate jumps on my watch/phone. I think my first day of monitoring my HR, I noticed a jump from 47 to 127 after 1 minute of standing. Then, after about 3 or 4 minutes, it goes back down. Recently, I haven't had any huge swings - mainly around 30-40 increase in rate. Yup, bending over to do yard work gets my heart rate up fast - often up in the 150's-160's depending on how long I bend over. When I stand up after bending down for a long time is when I almost pass out. No fun for sure!

This is interesting as I was just diagnosed with cervical stenosis. The spinal surgeon said I'd likely need surgery someday, but for now we're going to try some steroid injections in the neck and physical therapy. I don't have POTS since my HR goes way up and then comes back down. For example, today I had 3 cases of it going from 50 to 120 upon standing, but within a few minutes it was back down to 60's. Still, it makes me feel like crap when it does it - but fortunately it doesn't happen every day. The neck problems are likely the cause of my gait and balance issues, but a lot of the symptoms between the neck problems and my dysautonomia problems seem to be similar, so I don't know what's really going on. Since I have my gait and balance issues even on days that I don't have my dysautonomia problems, I assume my neck problems are the cause. It would be interesting to know if the neck problems cause the dysautonomia problems? Is that even possible?

Ags, thanks again for the reply. It sounds like you found someone that can really help. I'm hopeful I can too. If I could just get rid of the daily brain fog, I would feel so much better. I've had an initial contact with one of the Dallas offices. Looks like their first appointments available are in May - which isn't too bad. I need to see if they will at least do a TTT on the first visit and not just want to do a 20 minute "get to know you" interview. I'll be spending the night every time I have a visit, so I want to get as much done as possible. In the meantime, I've got a sleep study scheduled for April. I've got a cognitive test scheduled today with my neurologist. She want's to see if she can pinpoint which part of my brain might be having problems. I might try another round of ENT tests to once again rule out inner ear problems. If most/all of my problems are autonomic, then these tests probably won't show anything, but I'm trying to more or less rule out things. The neurologist has already ruled out MS, MSA, Parkinsons, and Alzheimers. My brain MRI came back fairly clean. As I mentioned above, I found a new ailment with my neck MRI and I'm going to a specialist to figure out what to do (if anything). It's possible my bulging disks in my neck might be causing my gait and balance issues, but who knows. Thanks.

Thank you Ags! I've started looking into what it will take to see one of the Dallas specialists. It's obvious that my Neurologist and Cardiologist aren't familiar with autonomic dysfunction. I've had 3 episodes today where heart rate went from high 50's to 120 upon standing. Mine always comes back down quickly (within 10 minutes), so I guess I don't have actual POTS, but something similar. Pistol above suggested I might have neurocardiogenic syncope. That's what I hope to find out. All I know is I have brain fog almost every day (among other symptoms) and it makes my life not much fun. I have to think these large spikes in heart rate are contributing to my symptoms.

I guess I need to take a copy of the video to all of my doctors. At my neurologists visit today, they did it the same way my cardiologist did it - lay down for 15 seconds, take pulse, sit up for 10 seconds, take pulse, stand up for 10 seconds take pulse. I told the nurse that it always takes at least a minute or two for my heart rate to go up. Also, I need to be sitting down for longer than a few seconds. She didn't seem to care. The doctor told me she didn't know anybody that does a TTT in my town, but if my vitals test showed something, she would look into it. I guess that won't be happening. Oh well, I did find out that I have a totally unrelated problem I didn't know I even had. The spine MRI showed bulging disc in my neck. The neurologist wants me to see a surgeon to see if they think I need to do anything about it. That's all I need - another problem. LOL!

Thanks Pistol for that video. My cardiologist didn't do anything close to that, but then again he only has 15 minute appointment allotments, so it would be hard to do. I have a neurologist appointment today and she told me last time that she was going to do a workup of my vitals that sounded a lot like what was done on this video. We'll see. There are no autonomic specialists in my state, so I'll have to go out of state. I plan on asking my neurologist if she knows of anybody and if she could refer me. Yesterday, I had a "spell" where my heart rate went from 60 - 125. That one was a doozy. I can always tell when it's happening because I get an instant headache, start breathing heavy, my throat feels like it's closing up, and I feel faint (but have never fainted). But, what's weird is it doesn't happen every time I stand up. Yesterday, for example, it only happened 2 or 3 times. I wish I could figure out what triggers this. Thanks again for responding.

A few years ago, I went to a neuro-ophthalmologist trying to figure out why my brain fog was always so much worse in stores, movies, etc. He diagnosed visually induced dizziness (also known as shopping cart syndrome). He gave me a prescription for Diamox, but that didn't help any. I think it is more common with people with neurological problems. At the time, I don't recall having any autonomic problems but maybe I did and just didn't realize it. Anyway, it's no fun! Sometimes when I'm at the store I swear people are jumping out at me on purpose!

Thought I'd give an update after my cardiologist appointment. As luck would have it, at the doctors office my heart rate went from 58 sitting to 59 standing. Kind of like taking your car into the shop and the problem doesn't repeat. Ugh! Of course, I was only sitting for a few minutes and they took my pulse immediately upon standing (one time). Oh well, he didn't act like he knew anything about POTS or other autonomic problems anyway. He said to drink more water and sent me on my way. Of course when I got home pulse went from 55 to 123 very first time. My wife says I can cure my problem by not looking at my pulse rate. LOL!

You would think so, right? But, none of my doctors think so. They say it's not severe enough to cause symptoms. Personally, I think it's part of the problem, but not all of it. I've got a number of other symptoms, poor balance, gait problems, sexual dysfunction, speech problems, fatigue, etc. Hopefully, my new neurologist can help me figure this out. Thanks for responding.

Thanks for the response. I haven't tried doing my BP after standing up long. I'll do that see what it does.

Thanks Pistol for the information. Based on what you informed me about the HR increased having to be sustained, I guess I don't have POTS. It always goes back down. My BP doesn't change much at all upon standing. So, I guess I might have NCS. I also tend to have an abnormally low heart rate (45-55 range) which my cardiologist says isn't heart related (after several tests). I also have blockage of carotid arteries (50%-70%) and coronary artery disease which probably doesn't help things. My uneducated guess is my brain doesn't get enough oxygen - which might account for some of my symptoms (mainly lightheadedness, concentration problems, brain fog). I continue on my never-ending quest to figure out what in the heck is wrong with me. Ugh.

Yes, it tends to go back down. For example, this morning my HR went from 50 to 118 upon standing (over about 5 minutes). A few minutes later it was back down in the 70's. I had presyncope for sure. One thing I've noticed is if I stand still upon standing, the feeling of presyncope is much worse than if I'd just started walking around. Standing in one place makes it worse. The MS specialist was great! She spent over an hour with me. My other doctors (PCP, Cardiologist, Neurologists) usually were kicking me out of the office in mid-sentence after 15 minutes, Ha! Anyway, she doesn't think I have MS but is willing to explore some more things, so I'm going to do some MRI's and other tests. She was familiar with POTS and said she'd do some vitals lying and standing next time. I asked her if there were any autonomic specialist nearby and she said she didn't know of any in my state (Oklahoma). The list on this website confirms that. Looks like a road trip to Dallas is in my future. My main question is: since the actual presyncope feeling only lasts a few minutes, why do I have lightheadedness/brain fog the rest of the time? Is this normal for people with POTS?

Thank you for the reply. I do have a good BP monitor and used it at the same time as my Apple watch. They both showed the same BPM. Also, I have a oximeter that I use that is within one or two beats of my watch. I recently did a 48 holter monitor. I've asked my cardiologist to look at the actual test data and see if he sees short term spikes on that. I'm not sure he still has the actual test or not. He was looking for AFib, so he might not have noticed sudden increases. Thank you for you response! I'm going to an MS specialist today to try and rule that out. I've had doctors say anything from visual vertigo to possible MSA (Multiple Systems Atrophy) - I don't want that one!