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yes, the dysautonomia doctor at mayo saw how weak my legs were and then just assumed I had pots due to deconditioning. I was a very competitive dancer for 7 years, and a non-competitive dancer for the other 10. There's no way they just stopped being strong... must be a connection. But are we saying PT does not help or it just hasn't helped enough? Is it worth it, I guess is what I'm asking.

I live in MN too! Outside of St. Paul. I have said this before... and some don't agree... but when I wanted to go to mayo and it was a forever wait, I asked for appointments from all angles of my problems, cardio, neurology, ect. When a doctor accepted my appointment, he knew what pots was but was not the expert. However, he got me in to see the expert the next day! Who actually was less helpful than the random doctor who agreed to see me. I had to wait four months, but it was better than nothing. And they couldn't help me a ton, but agreed to keep seeing me for the next few months. Sorry I can't be of more help! Another tip though... I've found that while the st paul heart clinic and capitol neurology (through regions) can diagnose pots, they really can't do anything beyond it... they pretty much gave up on me.

Well, I got no new information on the pots stuff at mayo... but it's okay! I know they tried their best. I did find out that I have TB antibodies so I have to take the medicine for the next nine months. This means I need to find a primary care person at my school because I have to go back to them for the refill every month to make sure my liver doesn't explode and stuff like that. But how in the heavens am I going to explain all this stuff? I feel like I need a very experienced doctor who is prepared to handle my five zillion medical problems. I don't even know how to start the process, but can anyone give me some advice about this? Like, do I really need to find one who knows what pots is? Or should I make sure this doctor knows what he/she will be dealing with before I pick her/him? Or do I just randomly pick someone at a clinic I trust? Thanks friends! Elizabeth

I'm wondering if there could be a hormone imbalance of some sort. Anybody know anything about that? And what kind of doctor I should ask to see if that is something I want to check?

Thank you, thank you, thank you, all of you! I love this website because you all understand how hard it is to never know what's going on... Actually the confusion may be pots related... It happened during the TTT at mayo too! At about four minutes, I started crying (lol) and I thought I was telling them to put me down, but they told me after that I was confused and that I couldn't tell them what I wanted...? So... brain fog to the extreme I suppose? And I think I would like to ask for a gynecology consult... as long as we're doing stuff, we might as well do stuff! The weight loss was unintentional and I've been fighting it like crazy! I'm 5'5 and I used to be the "perfect" BMI... smack dab in the middle of good. But now I am underweight and I can't even fit in size 0 jeans and I've been trying to gain weight for the last three months by eating 5 little meals a day, eating high fat content like peanut butter and wheat bread and a lot of fruit and veggies and granola bars... even soda pop doesn't help! I just keep losing and losing and losing and it makes me angry. Thank you all for the input!

Hi friends! It wouldn't be the first time you've helped me! I'm trying really hard to think of anything that I could possibly be tested for before they send me away. again. like everyone else. Basically, I'm being evaluated at the Mayo Clinic in Rochester by a neurologist. He is very sweet. Yesterday I went in to see him to follow up on my last two days of appointments and he said that he "gives up" and they can't figure it out. The reason I wanted to go there was not really because of POTS stuff in my life, which is pretty clear, like fatigue and fast heart rate when standing or doing anything and passing out and headaches and all that just everyday. If it was just that I would buy the take a different beta blocker keep doing the salt/water/bed raising/compression stocking typical treatment and pray it gets better. But it's not, and I don't know what to do now... The problem that I wanted to address is these weird things that keep happening. I was wondering if you would help me think of ideas so I can help him help me. It was my impression that he would so these things if I asked him to. He was a very nice doctor. He even told me that just because he didn't know didn't mean I was crazy! But I don't know anything about medical stuff and I know you guys know. Will you help me brainstorm? Okay, these are the problems I want to clear up- sometimes (about six times in this year so far) I have these strange attacks. I have ridiculous chest pain so I wait for it to go away (sometimes it does) but then I get a headache like an aneurysm and I lay there in pain until for some reason I get really confused and I don't know what's going on, but then I get all sweaty and gross and I can't tell anyone what's wrong except that (I'm tired and my head hurts and my heart hurts. So naturally, this scares anyone who is with me and they take me to the ER and by then I'm usually just tired and I am aware, but I get really dizzy still when I walk and I always set off the tachycardia alarm on the heart monitor. Then they tell me I'm insane and to go to a psychologist. So I did! And she agreed with me that it wasn't mental and I also went to a counselor who said the same thing. My roommate won't live with me anymore because she's scared to come back to our room and find that I'm dead. I'm scared of that too. But really, what can I do? At some point, something must be wrong and I want help, but now I just cry by myself until I am unconscious because I don't know how to manage it. Even at night I get terrible tachycardia and all these problems occur when I'm already laying down. Some other things that really bother me is that I used to weigh 130 and now I weigh 105. None of my clothes fit and it drives me crazy! I have my period almost as much as I don't, even though I'm using the same birth control that has worked for five years! It just stopped being able to control my menstrual cycle and I get it all the time, with no pattern or order. I bruise like crazy ever since this started too. So far, I had a head guy say it's tension headaches, the pots guy says do the regular stuff, it's not epilepsy, my MRI showed an enlarged pituitary gland, but they said it's fine, they never commented on my 24 hour urine test, so I guess that's all good, I still have an endocrine test left, but the doctor said he think that will be fine, and now they just say what everyone else says- we tried everything, we just don't know. I can't go back to school like this. It's not fair to the ones who feel like I will die at any minute, including myself. But I also can't work because it makes me too tired. But I want to get my degree! I want to live my life!! I don't want to just give up like this! I can't just give up! So that's why I need your help. Is there anything you can think of that I can do? Thank you all so much!

Actually, he was the "expert of the experts"... he was a very nice guy and he spent a lot of time with me. I don't want to argue with the head of the pots division.... but I'm actually seeing a different neurologist so I guess I'll ask him when I see him again.

I'm at mayo getting all my tests done... it's going pretty well, but I'm afraid they will send me away will the "drink water, eat salt, raise the head of your bed, have an exercise program" speech. The doctor- who was very sweet and seemed like a fabulous, knowledgeable autonomic specialist- spent a lot of time with me trying to get me to believe that THE ONLY symptoms of pots are fatigue and tachycardia on standing. Anything else is not pots, he said. So anything else going on with my body isn't due to pots, but he is sure I have pots. He says he strongly believes that in six months, if I start doing all the stuff they say to do I will be mostly better. But I've already been doing this stuff since I was diagnosed and things are only getting worse. I would be really sad if they sent me away without actually helping me. What should I do? Any suggestions?

I got my midodrine refilled today without any problems. No one said anything, and they even had to call my cardiologist to approve the refill. Maybe it won't be so hard to get after all?

kitchmill, May I ask how this ended up for you? Did you test positive? liz

Thanks for the help! I can laugh about the ibuprofen now... it was just out of desperation that I did that. Oh well... I will see a doctor at mayo on the 8th. My doctors here both just tell me to ask someone else because they don't know what to do. Isn't excruciating chest pain normal for people with pots? This may be a silly question, but I've seen that people take ginger a lot. How do I do that though? Is it in supplement form or is it just straight up ginger from a spice jar? Thanks again Elizabeth

I know that I've said this before, but my chest hurts so much that I'm on the brink of insanity. I used to take large amounts of ibuprofen which helped (by large, I mean it wasn't unusual for me to take like 25+ in one day)but obviously that ripped my stomach apart- my bad. So now I can't take NSAIDs for a while. Tylenol type drugs don't work... Any suggestions?? Other than lay on the floor and cry? Elizabeth PS, I like the new forum set up!

Wow, that was helpful. Thank you! All these doctors just tell me the name of whatever they think I have but then I have to try to figure out what it means myself. Thank goodness for all of you who know about these things! Elizabeth

Can't help much, but I wanted to throw in a response or two! When I have really bad "episodes" as they call them, I have really delayed responses too. People think I'm having a stroke or something because it takes me a while to answer simple questions. We haven't figured that one out yet, so I don't have any insight for you. For a while when things were really rough with the illness for me emotionally, I needed help to get up and walk to the bathroom. It hasn't been that bad in a few months because I have been managing my stress really well, not working much, and am on break from school. Maybe once things calm down for you, you'll feel better? There's always hope liz

Wowza. I'm really, really sorry that happened. It's just... so sad. :'( I am hoping and praying and crossing my fingers that somebody out there can help you. liz

Haha beats me! I guess they are busy! I was really blessed to get an appointment when I did... I called in may and got one for september 8th! I guess what happened was I called different doctors (a cardio, a neuro, a pots specialist) and begged them to take my case. The neurologist said yes and gave me the earliest appointment. I figured, well, once I can get in, maybe it will be easier to get where I need to be. Although if you already have a doctor there this reply isn't helpful at all! liz

Huh. And the drop with the tachycardia is POTS, I understand. The electrophysiologist says what I have is "POTS-like" lol... Thank you all for your help!

Huh. Complicated. When she took it, I was sitting down... whatever, I guess! But doesn't your height and weight make a difference to some extent? I'm a pretty small person... does that mean my blood pressure could be that low? I ask because during my TTT, my cardio guy said even when my blood pressure dropped, he could still feel my pulse, and that it was strange? lol Thanks for helping me out... I'm trying to determine my next move in all of this, but I don't know what I should worry about and what I shouldn't.

Hi friends! Another question for you. The other day I had my blood pressure taken at the doctor and it was 80/50. The lady asked if it was normal for me and I said that it was so erratic I really couldn't tell her. So she just shrugged and went on with things. So... online it says like 110/70-130/90 is "normal" but what is normal for you guys? what is too low... they say because I'm young it's all good, but I figure if that were true I wouldn't be so sick all the time. Also, does your BP go up and down at the drop of a dime? not with position changes, just at random? I just want to know what the heck is going on. liz

I always, always, always think "oh, for sure, I can handle that" and then it turns out I have way too high of expectations. Three examples: walking around on vacation, I thought, "If my grandparents can do it, surely I can." not the case. This summer, I thought I could definitely handle a 12-4 mon-fri job working with kids (which I love!). This was not the case at all. I can work about 2 days, three days TOPS before I can't reliably even work. Lastly, I thought I could handle going back to school last semester, and I was in the ER four times in a month. But hey, trial and error. don't put everything in one basket... go with something flexible so it will be less disappointing if you can't do it all at once. Way to be brave! Go for it! Liz

I've lost a lot of weight, but I haven't noticed that much change in my appetite.

aww man! I kinda like standing. But what should we do? How can we get as much as we can before it goes away?? :'(

That's stupid. What test isn't investigational? It's a test!!! Duh!!! I feel like that's saying that you shouldn't get a pap smear or a blood test or a MRI for headaches... you have the symptom, you need the test. Stupid.

My MRI and CT scans were normal except for mild chiari malformation. Nothin else. I'm 20

I take a stimulant drug for narcolepsy, it's different, but I feel it has the same affect. I've had AD/HD since I was a kid. So my suggestion is try a sleep doctor. Lots of pots people have sleep problems, and they may prescribe something for that. As a special education major, I have to throw in the disclaimer... don't take it if you can't live without it. Since it kills your appetite it may make things worse in the end... and if you need to sleep but can't because of stimulant medication it just ***** all around. That's the biggest problem I've had. Needing to rest to help with the tachycardia but not being able to do so. Well, that and it actually can cause tachycardia, so sometimes it's like a lose-lose battle. Ps, caffeine is a stimulant too... I learned in school that it can act on the brain in a similar enough way to be sufficient for some, although it is addictive too Oh yeah, and if you want to get tested for an attention disorder, that could speed up the process if you think it's plausible. Why did you take it before?