pink1975

I don't have chattering really, but I do have a weird thing where my jaw will just quickly snap shut really hard, smacking my teeth together. Some days it happens several times a day, somedays not at all. I figure it must be my nerves...like looneymom said, misfiring.

Well on a positive note...now I get to have pillows at work to lie down when I feel funky....lol.

I have been having a bit of a flare since last week. I fainted first thing getting out of bed last Monday morning, have been having serious pooling in both hands and feet and been generally feeling kinda yucky. This morning, I was especially bad, felt dizzy every time I stood up, couldn't seem to get enough air (just the feeling of it, I knew I was breathing). I ended up asking my boss to drive me to the emergency room. When I got their and went through the whole explanation they laid me down with and magically, lol, I felt better. So I just paid probably about $800 to lie down. I know that helps, I am not sure why I didn't think of it BEFORE going to emergency. SMH.

I read on this board earlier that some people drink tomato juice for their hydration because it has a lot of sodium. So, today after a catered meeting, I noticed some cans of tomato juice leftover (they had been hidden by water bottles). I tried it, and it was good so I of course looked at the nutrition info to see what all was in it. Tomato PASTE, water and salt. That's it. So of course, being as frugal as I am and a bit of a "why buy it if I can make it" kind of gal, I googled and found several recipes for DIY tomato juice from tomato paste. Just 1 part (can) to 4 parts (cans) water and a little salt (here's where we could customize it to get our individual salt needs taken care of, or use sea salt or pink salt, whatever). Turns out it costs approximately 1/4 the price of commercially packaged tomato juice. It's like those little cans of orange juice concentrate, lol.

Wow, I was just worrying about this last night. When I first lie down, it feels like I just stood up for lack of a better explanation. I was beginning to worry that something other than POTS was wrong, but this poll seems to suggest that it is just par for the course.

Depends on the day for me. Somedays I am good, others not so much. I don't miss work, but when I am really potsy (like if I am finally forced to bathe or shower cuz I can't stand it anymore lol) I have a VERY hard time getting to work and staying all day. I only live a 5 minute drive from my office, but that feels like 100 miles when I am having a bad day. And somedays I am ok part of the day and then suddenly not so much.

I suspected gluten issues long before I had ever even heard of POTS. I went through all of the tests, blood tests, endoscopy and even a stool test (the stool test was on my own dime, through Enterolab, which doesn't actually diagnose celiac, just if you have antibodies in the stool). The blood tests and endoscopy were negative for celiac, but the stool test was off the chart into the positive range. I stopped eating gluten and my gastro symptoms are gone. Of course, this was prior to the POTs diagnosis 16 months ago. I was STILL ill and looking for a doctor to help me. The wonderful Dr. I found not only put CELIAC in my chart to prevent any other Drs. from blowing me off because they don't "Believe" in gluten sensitivity in the abscence of positive blood tests, but she helped me get my POTS diagnosis by realizing there were issues that should be referred to a cardiologist. Also, some people with gluten sensitivity also have lactose intolerance so this could be something to consider.

I was just thinking earlier this morning that other than a slight asthma issue on the way to work, which was cured by a quick hit from my rescue inhaler, I was amazed that I was having a pretty good day. Then as I walked from my building, across the parking lot, to the main casino building, I must have twisted my ankle, stepped wrong or something and completely lost my balance. I fell forward, smashed the glass bowl that held my salad, crushed my umbrella and dropped my cell phone, cracking the case. I am soaked because it was raining. Of course I was mortified and ended up telling the three people who rushed to help me that I was fine. Needless to say, I skipped lunch. As I am sitting here, I am currently in pain, I think more from the impact and what that means for my fibromyalgia, since I didn't actually hit the places that hurt. Falling isn't new for me. I fell several times over the winter. Twice in one day while I was outside shoveling snow I just fell over, without slipping or anything. I was upright, and then I wasn't. Does anyone notice that POTS makes your balance worse or is this just me being klutzy?

I had a problem with burping too. I ended up getting diagnosed with Celiac about 2 years prior to my POTs diagnosis. I only get the burps now if I have accidentally eaten gluten (or dairy, lol).

I am in college online exclusively. My bachelors was full time, online, but I took only the bare minimum classes to be considered full time to qualify for financial aid. It took me an extra year to graduate but that was fine with me. I once accidentally had one more class scheduled than I could handle and thought I might die before that semester was up, lol. I am working on my masters right now and am taking the classes as scheduled, but I certainly am noticing that the extra stress is giving me an increase in my POTs symptoms. I have 5 months to go and can't wait until I can rest, lol. I kept all A's and one B in my bachelor's program ( I am a perfectionist and that B freaked me out, lol). I am trying to allow myself a little more slack in my grad classes but that it hard and I still struggle to keep A's even though I know that the stress makes me feel worse.

I have a laptop since when I am home I am often sitting in my bed. I also have a kindle that goes with me everywhere to keep my mind occupied and keep me sane, lol. I have a MomAgenda planner for organizing everything in my personal life, it has spaces for myself and my kids and since I can't remember things like I used to, everything gets written down. I have another bound book at work that I write all of my work tasks in each day. It is bound because I tend to lose papers that are loose. I also keep my ipod/headphones with me all the time since somedays excess noises, even just simple everyday office noises bother me so then I put on my favorite music so I can concentrate/relax. I also have a space heater by my desk since I am freezing most of the time even in the summer. I wear fingerless gloves almost all the time to warm up my constantly icy hands. I also always have blankets/shawls, etc stashed everywhere, car, home, office to keep warm. I also wear multiple layers every single day, knee high socks, leggings or tights, pants and a tank top, tee shirt and sweater layered together.

I work full time and go to school full time. Before my diagnosis two years ago I called in sick or left early so many times I was close to losing my job. But I made it, lol. I was going to school full time then and managed to finish my bachelors degree. Now I am just 5 months from my masters. I have a super supportive company, my previous boss drove me to emergency four times in one year, called for care for my 3 kids and stayed with me until my husband arrived. I realize that is unusual and I am very lucky. I also have a desk job as a graphic designer and my own office so if I need to lie down, put my feet up, whatever it is not frowned upon. I also take classes online only. I know that I could not manage to take campus classes since after I get home from work I am so exhausted and need to lie down. One of my most major challenges with working is the morning commute. I am at my worst in the morning and struggle to drive the ten minutes needed to get to work. Once there, I am pretty much useless for an hour or even two and have to do simple stuff like checking email.

I have had optical migranes with similar symptoms and no headache. I also have instances where stuff looks like it is moving or wiggling when I know its not. The eye specialist I saw told me it was from lack of oxygen to the brain due to POTs.

Wonderful! Congrats!

This has been a really odd and tough couple of weeks. Prior to this I was doing better (or so I thought) and was feeling less yucky (although I never actually feel good, just less bad). Last week I started feeling more tachy and lightheaded, especially in the morning. This week, I had one morning where I actually could not stand for longer than 5 minutes without feeling like I might faint. This morning I could tell as soon as I woke up that my heart was being cranky but got out of bed anyway since I needed to get my kids to school. Heart rate shot up so I took my pulse and it was 156 just from standing (no clue how high it got from moving around), lying back down it was 120. After drinking 2 gatorade and 24 ounces of water, taking my beta blocker and a .5 mg of xanax (which is a lot for me since I usually only take .25 mg since I am extremely sensitive to medications) and about 1/4-1/2 tsp of salt I am better, a little loopy and tired from the xanax but heart is back down to 88 (which is good since I had to go to work and only 20 minutes late, lol). Anyone have any ideas why I might be sliding backwards, or is it just the random nature of POTs? Also, just a vent....I swear I may punch one of my coworkers if she tells me one more time how "She gets that too" or "I hate it when that happens"!

This morning I took a too hot bath while getting ready for work and ended up throwing myself into a bit of an episode. I had presyncope symptoms but I still got in the car and drove to work. (Not a smart idea, I know). Anyhow, every single car that drove by caused me to feel startled, I actually jumped and each one gave me an adrenaline rush and a zappy electrical like feeling, elevating my heart rate of course and making the whole situation worse. I made it to work by talking myself through it, and am feeling much better after my beta blocker and a xanax (not anxiety, since I actually didn't feel anxious just tachy and fainty...lol), I personally have a heck of a time going to the movies because the screen is so big and the sound is so loud. I have to xanax myself to make it through (hence I actually don't go to many movies). Does anyone else get overwhelmed and easily startled by outside stimuli? Is this a POTS/dysautonomia thing or is there possibly something else causing it?

I have weird visual stuff too. I see weird spots, the edges of doors wiggle. One time the whole side of my daughter's face was wiggling. I have had optical migraines where everything is wiggling and sparkly. Some days I just see sparkles. A couple times I have had black wiggling tendrils in the top of my vision. Today I thought I saw something small and blurry run by, nothing was there. I have been to an eye specialist and he said it is all POTS related, not enough blood to the brain.

Some days I can dance the Macarena and some days I can't even walk across the parking lot? I absolutely hate the randomness of my POTS symptoms. Last weekend I taught a bunch of my daughter's friends the Macarena and danced the whole song with them and this week I can barely walk across the parking lot. I do have asthma as well, but my lung function has been in the normal range and it doesn't help to take my rescue inhaler so I imagine the shortness of breath is from POTS. The weird thing is that my beta blocker is doing a fantastic job and during these episodes, my heart rate stays around 96 (resting has been about 64 lately which is the lowest I have ever had). Can you have shortness of breath without tachycardia? Can low blood volume cause the feeling that you are short of breath? (My cheeks and fingers are always quite pinkish during these episodes so I imagine that I am getting plenty of oxygen). I have been having other POTS symptoms (I seem to be going into a flare). Last week I almost fainted after walking up three steps into my building and last night I had presyncope after I got home from work and had to guzzle two glasses of water and eat two salted (lol) pickles in order to stand long enough to cook dinner. Any thoughts?

I am suffering with much worse POTS symptoms today after not sleeping well last night. Also I am feeling more anxiety, have less patience, and feel like I just might hit the woman in the next office if she gets on my nerves anymore today, lol. I totally know where you are coming from.

My vitamin D level was at 5 when I finally found a doctor who thought to check it. She said it was the lowest she had seen. I had severe bone pain at that point which has resolved since taking high doses of D.

Hi Angel. I also have both POTS and Celiac although I got my Celiac diagnosis about 2 years before the POTS diagnosis. I don't notice the POTS symptoms improving with gluten free diet, but boy can I tell when I have an accidental gluten-ing! Then I am sick on top of being POTS-y. Not sure if the diagnoses were in reverse order there would be a marked difference. Also, if you don't want to get the biopsy, then don't sweat it. I had that done and it was no picnic. Just going gluten free and improving should be enough evidence.

Yep, me too. I don't wheeze either, just cough. This week has been tough, but I cannot pinpoint a good reason. I have been extra POTS-y this week too so that could be the cause. I would bet the anxiety is from your asthma, I know I get anxious when I can't breathe well. Sorry you are having a tough week. No suggestions, just commiseration. : )

I have naturally darker skin and I look "translucent" too. You can see the veins in most of my body. My two older daughters have more "solid" looking skin but my baby (8 yo) is blond, pale and "translucent". You can REALLY see all of her veins. I wonder if this is a POTS thing and if she will get it later in life. I get the "but you look good" quite a bit, I pretty much just smile and ignore. When I look at myself, I see the fatigue, permanent dark circles, the glassy look in my eyes and know that I look sick. BUT, I look better than a few years ago when I was undiagnosed so that is a positive.

It totally depends on the day for me. Some days I can't even walk from my car to my office and others I can walk all over (not really heavy exertion however, that is just a no no for me every day.)

I have been struggling with what I was told were panic attacks for the past 10-12 years. This started approx 1 year after my first daughter was born. Now that I am dx with POTS, I seriously wonder if my "panic attacks" were really adrenaline rushes due to POTS. That explains a heck of a lot, lol.