potsyturvy

I have the vertical ridges in my fingernails and both vertical and horizontal in my toenails. I am anemic, so I guess that's the cause of it.

22 year old female. German, Irish, Scottish, and Native American. More German than anything else though.

My doctor suggested 10 grams of salt a day. There was no way I was getting that (salt tablets make me really sick), so he finally put me on Florinef so I didn't have to eat as much salt. Right now, I try to eat 1/4 teaspoon of salt on my eggs each morning, and then I add a bunch of salt to the rest of my food throughout the day. I'm still not sure exactly how much I'm getting, but it's quite a bit. My doctor also said that we should only eat 2 grams of iodized salt a day and the rest should be uniodized because researchers aren't sure how large amounts of iodine affect people with POTS.

I got this today. I was walking through a store and doing really really good, when all of a sudden, I got weird feeling legs. I'm not sure if mine are really weak or if they just kind of feel that way, but it kind of feels like my brain just isn't sending the right messages to my legs to be able to walk right. I get that weird feeling in my legs while laying down and sitting down sometimes. I exercise every day. I do 15 minutes on the recumbant bike, 25 calf raises, and weights. I have been doing the exercises for a year now, and I still can't get more than 20 minutes on the recumbant bike because my legs get too weak. It is weird too, because I can walk quite a bit as long as I take a lot of breaks, I just can't walk for very long straight.

I understand! I forget things all the time, and sometimes I have dyslexic moments (or days) where I can't read things because the letters all get mixed up (I do not have dyslexia though). The other day I was making a doctor's appointment and when they asked for my phone number I drew a complete blank! I finally just gave some numbers that sounded close enough... later I realized I gave my social security number, not my phone number!! lol. It can be scary to forget stuff and not be able to find the right words to say. I have gotten myself in trouble a couple of times when I am trying to say something and I flip the words around and end up saying cuss words or things that are inappropriate on accident!

It's a tie between adrenaline rushes and vertigo!

Thanks so much for the encouragement!! It is exciting to feel like I am finally making some progress! Brenda, I did vestibular therapy for 3 months last year. It helped some, but I think my pt focused more on the POTS exercises than on the vestibular therapy I'm thinking at some point, I might ask my doctor about vestibular therapy again, but still not sure about it.

So, yesterday, for the first time in years, I walked on a treadmill. I have been using a stationary recumbant bike for about a year now for my exercises and I am trying to start walking for exercise now. I have a vestibular problem, so balancing is really hard and I was scared to try using the treadmill. I walked for 5 minutes at 2 mph and then took a break, then walked for 7 minutes at 1.5 mph. I know that is like extremely slow, but it was a HUGE accomplishment for me since only 6 months ago, I could hardly even walk to the bathroom. I was just so excited that I was able to do it that I needed to share with people who would understand what a big deal this is! I also had a question though. After walking it my achilles tendons were really tight and sore. I have EDS and so I was wondering if this is normal or if there is something I can do to prevent injuring that tendon?

I have hypovolemic POTS and am going to test for hyper POTS soon. I get shivering and goose bumps a lot! I can shiver and have goose bumps and be sweating profusely all at the same time too! It is so weird.

Thanks for all of your responses! I am allergic to yeast (which is in everything!), but am not intolerant to anything that I know of. I've had allergy testing done multiple times and yeast is my only food allergy. I have been tested for celiac multiple times (skin test, blood test, biopsy, and a one month elimination diet period) and none of them came back positive for gluten intolerance. I also did the lactose intolerance test and it came back normal, so I don't think it's an allergy. It seems more like a neurological or muscular thing to me. I talked to my ep-cardio about it and he ordered a gastric emptying test for it. I did that yesterday, it was where I drank some radioactive orange juice and they had a camera montior as it went down. My doctor thinks it might be related to the dysautonomia, but he also mentioned some other things that could cause it. So, I guess I'll see what shows up on that test. While I'm sad so many of us deal with this issue, I'm glad to know I'm not the only one dealing with this. I'll let you all know what the test shows! Hopefully it will get me some answers!

I had a QSweat test. I'm not sure which one you are referring to. On the one i did, they had me sit in a chair and they put little electrodes on my arms and legs. I think there was a chemical or something on them that makes you sweat and then it measures how much you sweat in each of the areas where the electrodes are. It wasn't really uncomfortable or anything since I could sit and they didn't make the room get hot or anything like that, but it did feel like ants were biting me where the the electrodes were, and it left big red marks on my arms and legs for the rest of the day.

I kind of understand what you are saying. Occasionally, I am able to play sports (like 4 holes of golf with a cart, or shoot a couple of hoops). It is frustrating though, because if you can manage to do anything, no matter how horribly difficult it is, doctors just want to write you off and act like you are functioning like a normal person. My doctor that diagnosed me with POTS told me I was extremely highly functioning and didn't need much for treatment because I was attending college, even though I told him I had to use a handicap tag to park close enough to walk into buildings and I missed more classes than I attended, and when I went to classes, I spent the rest of the day in bed because I was so sick from it. Yes, that sounds like really normal functioning to me I love the way you say you can't dry your hair.. I totally relate to that! I hate showering and drying my hair more than almost anything! I rarely dry my hair, but if I have to, I have an outlet on the floor in the living room, so I alternate between sitting and laying on the floor while drying my hair. lol. I think if you explained it pretty well on here. Maybe if you just explain that you are trying to live as normal of a life as possible and that you pay all kinds of consequences by playing hockey your doctor will be more understanding? Good luck! I hope your appointment goes well!!

I always have a really hard time swallowing pills, even the smallest ones. However, there are times when it is easier and times when it is nearly impossible and I have to use my pill crusher or take liquid meds. I used to think it was just a mental block, because I rarely choke or gag when taking pills, it is just hard to coordinate the movement to swallow (i don't know if that makes sense or not, but it does to me! ). I noticed that when I swallow liquids at all, it takes me WAY more effort than any of my family to swallow. It's like, instead of swallowing in one gulp like a normal person, it takes 5 or more gulps to drink just a small amount of liquid. I tried explaining it to my doctor a while back, but he pretty much blew me off. Does any one else have a similar experience with this? I also have GERD and a hiatal hernia, so I was wondering if that could have something to do with it. Like I said though, it's not like I'm choking on anything, it's just that it takes a LOT of effort to swallow anything.

Tinks, Hypovolemic POTS means low blood volume. My ep-cardio did a cbc (complete blood count) and found that I was hypovolemic. The basic treatment for it is increase in salt and fluids to expand blood volume. Hyperadrenergic POTS has more to do with adrenaline levels I think. One of the tests is to check upright norepinephrine because it is high in Hyper POTS. People with Hyper POTS also tend to have orthostatic hypertension. There are usually more anxiety symptoms with Hyper POTS. I know a lot of doctors have different ways of classifying POTS types, but this is just one of the ways that the ep-cardio I see does it. Hope this helps explain it some!

I think it depends on who you go to and your response to the tilt if they inject you or not. I've only had 2 ttt and I wasn't injected for either of them (I am in the U.S. though, I don't know how they do it in the U.K.). I found that the ttt was more accurate than the poor mans tilt. When I did the poor mans tilt they had me lay down and took my hr immediately then had me stand up and took it immediately. It "didn't increase at all" which I kind of doubt, I think it isn't as accurate when it's just a nurse counting your pulse. When I had my second tilt, they did an ekg, measured hr, bp on both arms, and had something that went around my head to measure something (I don't remember what! lol). Both my tilts went from 100+ bpm laying down (I have IST) to 150-180 bpm standing and stayed that way through the whole tilt. The first ttt I did was on a table that moved really super slow and the second table moved a lot faster, I actually preferred the one that moved faster than the slow one! You usually lay down for about 15 minutes on the tilt table and then the table moves and stands you up (there is a foot rest to stand on) for about 15 minutes, then they lay you back down. They also have buckles that keep you strapped in in case you faint so you don't fall on the floor Hope this helps explain it some!

I guess my first tilt was worse than my second but I put that they both had bad reactions becaus my first one wasn't really done right. The doctor had me stand for an HOUR! It was absolutely miserable, but I did also have a ton of symptoms on my second tilt I just didn't have to stand as long so they didn't have as much time to get so bad. Both of those were before I started taking meds for POTS. I hope yours isn't too bad! Maybe since you are on medication for the POTS, it won't be as bad?

I don't know if hypervitaminosis D can cause thinning of skin or not. I have mentioned that I think it is a really really high dose to some of my doctors before, but none of them seemed concerned. I am supposed to take 50,000 IU's 3x a week for 3 months, then switch to one a week, indefinitely. I'm almost through with the three months of 3x a week. I am a little concerned because my last calcium had gone up from 9.6 to 10.1, but I think it will be fine once I start taking it once a week.

Well, Jennyg97, you convinced me to make an appointment today I have been having horrible allergies, so I figured I'd kill two birds with one stone and go to my family doctor. He ended up not being available until next week, so I saw someone else. I ended up with a steroid shot yay, and they did a bleeding test which came back normal. I'm thinking you're probably right, Sugartwin, that it is just EDS causing it. I'm still going to bring it up with my ep-cardio next week, but at least this puts my mind more at ease.

I get this too. I usually know what I am trying to say (sometimes I can't remember some of the words I'm trying to use though) but I can get pretty tongue-tied at times. Usually the physical symptoms of talking are worse than the brain fog though. I get really tired when talking and like I don't have the energy to form the words sometimes. I also get out of breath when talking at times. I try to just stay quiet when my symptoms are worse and avoid situations where I will have to talk a lot. I definitely get "the cough" too. I hate it when I am talking to a friend and I keep having to cough just to be able to talk! It is weird.

Okay, so I brought this up with the geneticist that I saw today. He didn't say much about it, other than maybe, at some point, I should see a hematologist. I'm scheduled to see my ep-cardio in a week, so I guess I'll try eating more leafy green veggies like you said, Jennyg97, until I can get in to see him. I really want to avoid my primary at the moment because he seems to do more harm than good. I live in a small town so there aren't many family doctors I can go to. I've been to all of them before at one point or another and my current one is the only one who has listened or tried to help at all. I think once he sees some of my test results from the geneticist and once I go to Mayo, he will quit thinking it's all in my head and take me more serious, but I don't know. Thanks so much for your replies!!

Just wanted to mention, I love this thread! I had a geneticist appointment today and got diagnosed with EDS type 3. It was pretty exciting in some ways to get the diagnosis, so I kind of know what is going on with my body! I am supposed to go back to my ep-cardio next week and am hoping he will take the diagnosis seriously. He keeps telling me I can't have hyper pots and hypovolemic pots both because I haven't been diagnosed with a connective tissue disorder, so now hopefully he will test me for hyper pots! Just had to get that off my chest! Things are looking up

Thanks for your reply Lovebug! The sweat test is where they put some electrode like things on your arms and legs and they make you sweat. Then they measure how much you sweat to see if your body is regulating your sweat glands correctly. Sorry, it's not a better explanation, but I don't entirely understand how it works I'm definitely bringing up the heart sounds to my ep-cardio next week! While it probably is nothing, I still want to make sure!! lol

I'm so glad you all are here!! It helps so much to have people who have experienced similar things to what I experience. You all are awesome! It's great to have people who can tell me to calm down when a symptom isn't a big deal or to tell me if I should get something checked out. I guess that's what I'm looking for tonight. A few days ago I had to do a tb-skin test and a blood test so I can volunteer at the hospital. I bled a lot from both of those.. way more than normal! I've noticed over the last couple days that I'm getting minor bloody noses ( I almost never get a bloody nose). Tonight, I was cleaning my ears and they bled from me cleaning them! I've never had that happen before. My gums bleed when I brush my teeth. And this is a little embarassing, but I've been having some rectal bleeding. It's obvious it's not internal bleeding, it's just pink blood when I wipe. I also am covered in bruises. I am supposed to go to a geneticst tomorrow. I really don't want to talk about bleeding issues with him, but it is kind of freaking me out. I could make an appointment with my gp, but he pretty much thinks everything is all in my head and I just need counseling So I'm not sure what to do. I was also wondering if it could be one of my meds. Here's my list of meds: Florinef .1 mg daily (have been taking it for a year now and never had a problem before, except at times when I tried to increase it) Zebeta (Bisoprolol) 2.5 mg daily (ditto to what I said about Florinef) Celexa 20 mg daily (have been on that dosage for a few months) 50,000 IU's of vitamin d 3x a week (started it a little over 2 months ago) Prilosec (have taken it FOREVER!! or at least for a couple of years) I don't know if any of these could be causing the bleeding problems or not, or if the bleeding problems are even anything worth worrying about. I appreciate you guys' help so much!!!

I took yaz for almost 3 years. I didn't think I had any side effects with it, but I ended up quitting taking it when I was having nonstop adrenaline surges that lasted months. I realized that my symptoms have gotten worse really fast over the last 3 years since I started Yaz. I'm still not sure if it caused my problems or not. Yaz helped a lot with my pms symptoms though and now that I am off it, my periods are miserable and keep getting worse. They are super irregular (they were before I started Yaz too and were even irregular on yaz) and I have horrible depression, very heavy bleeding, mood swings, nausea, and increase in heart rate and POTS symptoms during my period. It's weird though because before my period is supposed to start (3 weeks after my last period started), I always feel really great and have a HUGE appetite (I don't eat much usually). But then when my period is "supposed" to start I start getting pms symptoms which last until my period actually does start (which can be a few days to a few months!). I almost want to go back on a birth control pill to control my symptoms, but am scared to because I think it might have been causing my POTS to get worse in the long run. Also, autoimmune disease runs in my family and almost all of my family members who've tried bc have had really bad reactions to it. (My sister developed Crohn's right after starting a bc and others have had arthritis like symptoms). Sorry this is so long! I'm just frustrated because I'm not sure what to do.