kmichaelson

Yes! A few times I've gone to the pharmacy or a store and the clerk would ask what my phone number is and I can't remember it! It's so embarrassing and awful. I used to take pride in being a somewhat intelligent person, and now I have to pause midsentence to try to just get my thoughts out or I trail off, and it takes me forever to read something and comprehend it. As much as it's annoying to have this disease at any point, I'm glad I made it through school before it hit me because I can't imagine trying to do school work with the cognitive issues I have now.

I don't know if my brain is causing these issues or is just affected by POTS and a lack of blood flow, but it's worrisome whatever the cause.

Just like everyone else, I'm better to be moving around than sitting upright for a long time. I only marked that symptoms while sitting are "bad sometimes," but I do have pretty major cognitive problems while sitting and it seems like I don't get any blood to my hands or feet either, so it becomes hard to move them, especially my fingers. It's taken me forever to type this in fact!

I don't usually get faint or too dizzy while sitting--that's much worse when I'm standing--so that's why I only marked "bad sometimes."

Yes, it's pretty pronounced for me when I'm in a quiet room as well, and there are times when it's pretty loud even in a room with noise, though that's not very often. Do you have other ear problems? I've had sinus problems almost all my life and have the feeling of fluid in my ears, and all of this started with vertigo for me, so I've often thought there's some ear issues going on as well, but my ENT didn't really find anything big on all my tests. I also get a rushing sound in my ears when I first wake up and move in the morning. One doctor told me this is a type of tinnitus as well, though its very different than the ringing/buzzing I have otherwise.

Sorry you have this--mine isn't usually loud enough to be too annoying but I know for others it can be an extreme pain!

I'm in the same boat as so many of you. I actually moved to a new city shortly before I got sick, so I didn't have a chance to meet anyone outside of work, and now that I've left my job, I don't really know anyone in the area. I hope I can keep in touch with my friends from work, but as others said, it's so hard when I don't have the energy to be good company, and I'm so unreliable about making plans because I never know how I'm going to feel. I'm lucky to have a husband who's my best friend and I have some family just a couple of hours away at least, but my social life is pretty nonexistent otherwise. Maybe we should all start a book club or something so we have something we can all do socially together from a distance.

Yes, I have difficulty walking just like you both described!

Yes! I've been wanting to ask this same question! I've been kind of concerned because even though I've had these problems for about a year, they've gotten a lot worse recently. Anything that involves moving my fingers with any sort of precision has gotten very difficult for me. I asked my cardio dr. if this could be due to dysautonomia and lack of blood flow, and he said he thought it could be. Still, I worry that it's something more to do with my nervous system. I had some nerve tests this past summer, and some of my nerves were "slow" (whatever that means) but the test was inconclusive otherwise (sigh). It would just be nice to know what's going on with my body for once and know what to do to treat it.

Going up hills or steps is just like that for me as well. On good days, I can walk on flat ground pretty easily for a long time, but whenever I go up stairs or any sort of incline, I get really faint, short of breath, tachy, etc. I don't really understand why an incline makes such a difference, but it definitely does for me. I've been trying to exercise more for the last couple of months (slowly building up) and it doesn't seem to have helped with this issue so far, but maybe in time.

The weather? I don't know where you are located, but where I live almost EVERYONE is currently parched. The cold dry air with no snow or rain for weeks on end plus being indoors with dry heat going will literally desicate you. For me, it is just worse than for normal people because of POTS-related urination/dehydration. I can have 8 ounces of water and won't hold onto any of it-- or so it feels.

But yeah, could just be normal. My perfectly healthy parents have been having the extreme dry skin, dry eyes, dry nasal passages (with frequent blood noses from dry air) issues too.

The winter weather definitely worsens this in my case. I always have dry eyes and mouth, but everything (skin, nose, etc) is worse in the winter. Have you tried using a humidifier? That's helpful to me, especially at night so that I don't wake up feeling like spent the night in the Sahara.

Can anyone explain what ventricular lactate means? Sorry, this sounds interesting, but I can't figure out the meaning of that!

Good luck with this, Katy! how did your doctor ever know to look at your C4a levels--was it because of Lyme? My sister right now is going through all kinds of Lyme testing and I never realized how difficult it is to determine if someone has this disease or not!

Does anyone else have a problem with getting their heart rate up using the recumbent bike? I can increase the tension and peddle fast and my heart rate will go up some but really I don't ever feel like I am getting the kind of aerobic workout I used to do pre-POTS. The flip side of that is that I can't run for any length of time because of my joint pain so jogging isn't a good answer for me either.

Hi Katy, I have this exact difficulty. It's really hard for me to get my HR above 125 no matter how hard I pedal on the bike. Doing anything standing up, however, my heart rate sky rockets pretty easily, but I get pretty bad joint pain as well so I'd rather do the bike if possible. I just don't know how much good I'm doing myself if I can't get my heart rate up higher than that. It's only been about a month that I've been exercising on it, so maybe this is just temporary.

Cfmartin, I can't comment on the hyperadrenic, NO, Mast Cell theories, but Dr. Stewart recently wrote an article online going over several proposed mechanisms of POTS/OI: http://emedicine.med...902155-overview

As for the angiotensin ii theory, I'd be happy to answer any questions you have as best I can. I threw out everything I know on the last thread.

Thanks, Jangle, for sharing this! (And thanks, Claire, for asking in the first place!) I feel like I finally have a slightly better handle on the different identified mechanisms going on with so many of us. I feel like I have so much to learn about this disease and I'm grateful for all of the knowledgeable people here!

Hi Ruby, my BP is very low like that when I first wake up and I often wake up drenched in sweat as well. You described the difficulty of my mornings of stumbling around perfectly too... I think it's somewhat 'normal' for BP to be lower when we sleep, but I would guess that ours is lower to the point of causing our symptoms. I'd like to get some additional testing done to help me figure out these symptoms a bit better. I'd be very interested in hearing what you find out--good luck following up with your cardiologist!

Oh yeah, I forgot that I get one other weird thing during these spurts of choking...sometimes when I try to swallow, I'll get about half way through the mothion of swallowing and then I'll get "stuck" like my muscles stop receiving the message to keep swallowing. It lasts for a second or two, then, my muscles will resume the rest of the motion. It is also worrisome.

katy..... i do the EXACT SAME as you are describing!!!!!

This is what happens with me too--it happens very very often for me! It's not that I choke on something once I swallow, but that I take a drink and then can't actually swallow. I have to wait anywhere from a few seconds to like 30 seconds for my throat to do what it's supposed to!

This is interesting and gratifying to see so many cases that seem to disprove the idea that we all got this just because we're deconditioned! I know that wasn't the case for me either. I was always very active and played three sports all throughout school and exercised in what off-season I had. As an adult I wouldn't call myself a gym rat, but I've always been a consistent exerciser--either going to the gym for 45 minutes over my lunch, playing tennis, biking, walking, whatever the weather and my schedule allowed. I miss being able to exercise and feel good and healthy from it. Hopefully I can slowly work my way back to it. I miss yoga especially because it seems like that would be gentle enough for me right now, but I'm too dizzy for almost all of the poses.

Thanks for the response, Mary! I've seen Dr. Fouad mentioned in other threads too. Did you just see him when you visited or did you have additional tests done (like immunology or endocrinolgy types of tests)? I guess I'm curious about how POTS is affecting other symptoms or vice versa. How would you compare the Clinic to visiting Dr. Grubb. I'm actually lucky in that I'm very close to both, so I've been debating where I should go first.

Sorry for all the questions! Sometimes I just don't know where to start with these things.

Dr. Fouad was the doctor that I saw and she is very good with the TTT and discussing the problem. By the time I saw her, Dr.Coghlan had been treating me for about 20 years and I was on many medication when given the TTT. But her diagnosis was still autonomic nerve disease. My results were much better than before but still not good. Then I decided to see Dr. Grubb and he is now trying to help. She is a lovely person and really does listen. For diagnosis she is a wonderful doctor. Hope this will help. Fell free to ask anything.

Hi everyone, I've been diagnosed with POTS for a few months now and midodrine has helped my symptoms to an extent, but I've been feeling like I'd really like to get more of a handle on what might be the underlying cause of my problems. Plus, I have all kinds of symptoms that don't really seem to be controlled by the midodrine (digestive problems, cold extremities, loss of dexterity, etc.)

I guess what I'm hoping for is to get more of an overall picture of what's going on rather than just seeing on particular specialist, but I don't know how to set such a thing up (or if it's possible I guess). For those of you who have gone to the Cleveland Clinic, could you tell me if this is how it works and, if so, how you went about having an overall evaluation? Did you think it was worth the time, money and energy overall?

Congratulations on making it through that process, Tenille! I haven't yet applied for disability, but I can totally relate to the feelings you're describing because I've been feeling like a schmuck trying to get ADA accommodations at my work. My family has always disparaged anyone who needs any sort of social program or assistance, so naturally I feel some shame about needing them myself. But these programs exist for a reason and you're helping everyone else who is in this same situation by continuing to set the precedent that this disease is real and majorly affects our lives! I try to think like Julie suggested: that this is just a temporary situation--it's what I need right now, but not necessarily the rest of my life.

Dizzyblonde - me too with the feeling of fluid (both ears to varying degrees) for over 10 years. It's crazy - they never see anything and inner ear testing doesn't point to anything obvious. Can you describe how it feels for you? I can hear and feel it - if I push on my ear I can feel this "fluid" move and hear a noise, like a suctiony noise. In the morning the insides of my ears will actually be wet/moist inside. I asked the last ENT whether it could be a CFS leak and he said, not unless there were holes in my ears (tympanic membrane? I assume). He insisted there was nothing wrong with my ears, definitely no fluid, and didn't think I had a vestibular disorder. It makes you feel like you're crazy or something.

Hi Naomi, Mine is exactly like you described!!!! I'm sorry you have it too, but it's gratifying to know I'm not the only one with this unexplained feeling! I know what you mean about feeling a bit crazy when a doctor tells you there's nothing there, yet you feel something there! It just feels exactly like I have water in my ears. It's worst when I'm lying down on my side because I can feel and hear the liquid moving around in my ear, just like when you have water in your ears after swimming; however, it's kind of a constant feeling of "fullness" in my ears even when I'm not lying down.

I've had the same discussions with ENTs as well... my eardrum is apparently fine so there's no explanation they can give me. I've wondered about Meneire's (because I have chronic vertigo too) but my hearing seems okay and my ENTs have never diagnosed it. I've thought about going back and asking more pointedly if they could look at Meneire's but I'm kind of sick of doctors right now. Like you, the inside of my ears feels kind of moist too. Not to be gross, but I don't think it's ear wax because it seems way too watery for that.

One doctor told me once that because I've had sinus surgery that perhaps a nerve was affected during this that has given me this sensation ever since, but seeing how many people on this forum have this same issue, I have to think there's some connection to dysautonomia going on. Anyway, I know you're not crazy, Naomi--maybe our ears our just a little crazy.

I'm not sure if this is exactly what you're describing, but I get kind of numb/tingling jolts sometimes where it's kind of similar to that funny bone sensation. When I have this I feel kind of twitchy and my eyes feel jumpy. Is that similar to what you mean? I feel almost like this could be a brief adrenaline surge, but I don't know.

Hi RunningWild, I have these same symptoms everyone is describing as well, but I developed them about 12 years ago and have only had really pronounced POTS symptoms for about 2 1/2 years. (I've probably had mild POTS for about the past 15 years though.) In the past I had a lot of sinus issues, so I'd assumed my ear issues were related to that, but doctors never seemed to find fluid in my ears even though it's felt like I have fluid in there for more than a decade! Anyway, I don't know if it's a POTS-related issue or something pre-existing for me, but I do find it extremely interesting that so many people on this forum have the same symptom.

I'm sorry, jangle. That's so frustrating! I haven't had doctors put it quite so bluntly, but I've certainly had lots of doctors imply that they've run the tests and prescribed the standard meds, so if I'm not getting better, then they don't want to see me anymore. I worked in a field peripheral to technology and I compare this phenomenon to when someone calls in with a tech problem and the help desk can't troubleshoot the issue, then they often assume it's a user error since they don't have documentation of this particular problem! It's like if our disease isn't in a doctor's matrix, then they want to wash their hands of it. I hope you can find the right doctor, because certainly there are caring people out there who have the knowledge and dedication to help; it's just very difficult to find them and often a long discouraging journey on the way there.

Hi all, I've been struggling for the past year or so to try to hang on to my job while dealing with POTS. Unfortunately I've used up my available FMLA, and I haven't been able to get any additional leave granted. It was suggested by my human resources department that I speak to someone about ADA accommodations, so I did that and have requested an extension of my leave of absence.

I'm just wondering if anyone has gone this route themselves or knows if this sort of thing is possible? I searched the forum and saw that a lot of people have taken leaves of absence, but I don't know if those were all through FMLA, ADA, or other methods. I'm certainly not trying to 'take advantage' of ADA or ask for something that I'm not entitled to... some days I'm decent and can move around, but most days it would be impossible for me to work. I'd tried doing a part-time schedule as well, but that was too much for me at the time. I've submitted the initial ADA paperwork today, and I'm getting additional forms sent to me today, including some that my doctor will fill out. I'm also worried that my doctor won't understand the extent to which I've been affected and will question my request because I don't "look" sick.

The HR person I've spoken with has been very nice, but she can't really tell me at this point if there's fair chance of this going through or not. I guess I'd just like to know if I'm wasting my time with this request or not.

Anyway, sorry, I think this is 2/3 of me venting and 1/3 just asking for input from everyone.

PS. I also recommend that you keep the circulation going as if you don't that is when numbness occurs. If you do non-weight bearing exercise it helps pump the blood back up into the body and keeps the blood feeding the nerves.

Thanks for all the tips, TCP! It's good to know about something that can be done to help this.

It's funny that you bring this up, because this used to be the case for me. My dizziness and fatigue would get much worse during my cycle. However in the last few months, I've noticed that during the first 2-3 days of my cycle, I've felt MUCH better than normal--in fact, on those days I feel almost like a normal person! The bad news is that about midway through my cycle my endometriosis kicks in and I start having extremely severe vomiting and cramps, so then of course I don't feel so great any longer and it takes awhile to recover from that... bleh, that's another story.

Anyway, I guess my experience isn't quite like yours, but I DO notice some change of symptoms at this time.