mrsdavidson8605

I was referred to ANOTHER cardiologist by my PCP, who, supposidly was "up" to date on POTS... yeah right... he saw that I have tried all the "typical" POTS medications and began treating me as if it was MY FAULT that they weren't working/and/or I couldn't handle the side effects.... He said I should try Middodrine again. I can't HANDLE it... I had tingling down my neck for hours everytime I took it.. the other medications either didn't work. or the side effects were too much to handle.. He told me I need to "evaluate" whether or not they were really side effects!!! OMG I haven't been treated like i'm crazy by a doc in quite a while, but it stirred up some old emotions!! He put me on Methylphenidate.... anyone tried this? I read in one of Dr. Grubb's chapters from his book (this doc printed the chapter for me) that this drug is kind of like Middodrine... but worse side effects.. great.....Anyway, the doc basically told me he didn't think this medicine was going to work and that there wasn't anything else out there to try.. maybe to try two different ones in combination.. I'm so frustrated and confused. I don't want to go back to taking something that didn't help. My other thought is how do they pick which medications to take in combination.. it seems like a guessing game that i'm NOT willing to play!!! I have to give this stuff a week and see what happens. We want to go see Dr. Grubb, it's just my appointment isn't until October and Ohio is SO far from Kansas... I'll admit, I had a "melt down" today. Haven't had one of those in a while, but when A doc basically doubts everything you tell them, and then says there's not much hope (in so many words), it's hard NOT to break down..... On a lighter note, I've been able to go swimming! We got a Y membership. It KILLS me the next day, but i've noticed my afternoons are better... hey i'll take any relief i can get at this point! Whenever I start to feel sorry for myself, I remember that others are way worse off than me. We all can count some blessing on this terrible road we are on. Hope everyone is doing well....

Hi, Toprol lowered my BP to like 80/60... actually all the BB's did that.. just be sure and monitor your BP. It works for some, but not others. Good luck!

Hi, to a certain extent I can understand your frustration. I was pushed antidepressents for a long time, but for different reasons (doc thought I was depressed, didn't think I had POTS). I was totally against taking them for my own reasons that I won't go into. I ended up taking Effexor for a while, just to say "Okay I took it". It didn't help and I couldn't sleep for days on it.. now that's not to say that antidepressants don't help people with POTS.. i'm sure they do for some.. just not for me. If you feel that strongly against taking it, I would say get a second opinion before you do. It's ulitmately your choice if you want to take the drug or not. You're not going to know how it affects you until you take it. But it's okay to have different opinions than the doctor!!! they'll live through it.. haha just remember to always weigh the risks/benefits.. good luck

Hi, Welcome! Sorry to hear that you're having a rough time. Have you had a Tilt Table Test done to rule out POTS? I would definately get that because that will be your "proof" that there is something wrong. As for the anxiety, that's your call as to whether or not you really have that. If so, by all means, continue the prozac. But, from my experience, many of us are written off as having some sort of anxiety problem. If you don't feel any benefit from the drug, then I would say don't take it! (of course, talk to your doc about this before stopping medications). I would also ask MANY MANY questions about medications before taking them, and also research if that is the best option for you. This website has a lot of great links that are helpful. As for the BB, I was in the same postion. I took them and they dropped my BP to about 80/60. THAT didn't help me... but everyone is different.. that is why it's so hard to treat. Always weigh the risks/benefits.. I was nieve enough to think when I first got POTS that there WAS a "magic pill" and was GREATLY disappointed after the middodrine did not help me.... 12 medications later, i'm learning that there is no magic pill, rather a combination of treatments... even that doesn't work sometimes... sorry to be so negative, but it is the truth and I'm just trying to prepare you for what may be to come.. but hey, you never know.. you may be one that the BB or whatever DOES help.. Just don't give up.. Keep fighting for answers. You're the only advocate for yourself! Take care.

Hi there, Just wanted to comment about the dentist thing. I had to have a crown done and my dentist was great! she gave me novicane with NO epinephrine (sp??). That is what makes the heart race so fast, and for us POTS people, causes more problems.. I actually read about it from a link on this website somewhere... anyway, she had to give me several more shots than normal (bc the non epinephrine stuff wears off faster) but it wasn't TOO bad. Of course, I was already anxious bc I HATE the dentist, so that didn't help. Another thing they did was monitor my bp and pulse the entire time. I would suggest that, just to be safe.. hope that helps!!

Man, that is discouraging for me bc i've already tried all those medications.. I wonder what else he tries and would it be worth my time and money to go all the way out there to see him...??? ugh so frustrating..

you're welcome. I know that it can be difficult because I HAVE BEEN THERE TOO!! actually in the same shoes you're in right now. I remember feeling the exact same way. Unfortunately, having the dx doesn't mean you're going to be instantly healed or that doctors will even know what to do, but at least you will have something, some proof that you're NOT crazy and there IS something physically wrong.... just don't be suprised if, even after the dx, some docs still look at u that way. it's just that there isn't enough research out there on POTS for docs to get a real grasp on it. I hope that you can get the TTT done as soon as possible... stay strong!

Thanks for all the replies. The test came back normal. Thank goodness!

Hi, First of all I am sorry to hear you are having a rough time, but glad you found this forum. It's great to be able to bounce thoughts/ideas off others. From my experience with the Mayo (I went to the one in Az), it is almost IMPOSSIBLE to get in as a new patient without a SPECIFIC diagnosis (ex syncope). So you NEED to have a TTT done. I would suggest just talking to your PCP about this. You may have to be firm and request it. Unfortunately, sometimes you have to be that way so docs will listen. As for the TTT, you never know how the results are going to go... I wouldn't worry so much about that, but I would just focus on getting the test done. As for me, they were going to give me medicine to "induce" symptomatic problems if I didn't pass out within a certain amount of time (sorry, can't remember what drug it was).. they didn't even have to use the medicine though, because I passed out after 14 minutes... Not sure if this is standard, but basically the medication will tell them how your body reacts to the environment, therefore telling them what they need to know... so maybe that will ease your mind about "having" to pass out (I know that sounds funny, but I was the same way; worried I wouldn't... believe me, if you have POTS, the TTT will reveal it eventually.. may take a couple times, but usually the first time does the trick)... anyway I hope that helps. Hang in there.

I have the same thing sometimes, in my eyes, hands, and feet. not sure what is going on, but it freaks me out! One time, my thumb twitched for about an hour.. strange....

Hi, There IS a theory out there (not sure how valid it is) that low temp is a sign of a thing called type 2 hypothyroidism... not many doctors who do modern medicine agree with this, but some who believe in the wholistic approach say that this type of problem cannot be ruled out with a normal thyroid test and people who have it, have a very low body temperature in the mornings.... again, i'm not sure how much research is out there on this, but I read your post and thought I would share that...

I know how you feel.. I DO try to drink at least 60 oz per day, and have a glass of water by my bed. I do wake up several times a night, so I try to remember to drink, but when you're half awake, it's kinda hard.. lol I've tried so many medications, and all have failed to this point.. plus I don't have a doc here where I live that has any idea about POTS. I'm thinking about the saline IV thing, but not sure if it's worth the hassle bc some people say it does nothing.. IDK I just wish there was relief!!! I'm glad i'm not the only one dealing though.. thanks for the post.. hang in there!

Just a thought, but I had the same type of horrifying pain a few months back and at first, the ER people thought it was stomache issues but then r/o that and said it was a ruptured cyst (after doing a sono).... just thought I would share that.. they also said the pain from that can last a few days to a week..

WOW! they suggested squats????? that would be deathly hard for me to do.. infact, just THINKING about it makes me weak! my hat is off to those of you who CAN or are even WILLING to do squats. I feel like i'm gonna pass out just bending down to pick up my daughter!!

I just don't know what to do. I am SO weak in the mornings. Tired. My heart rate gets up to at least 150 when I stand. This doesn't seem to taper off until at least 3 or 4 in the afternoon. My heart races all day but it just seems so much worse in the mornings. I even sleep at an incline on an adjustable bed. That doesn't help either. It's so hard to take care of my 10 month old daughter with this condition!! ugh!!!! any advice? I'm not on any medication currently but have tried SEVERAL of the "typical" meds for POTS. I also have done the salt tablets and the x tra water but nothing helps!!!

Hi, i'm not totally in your shoes, but I HAVE had to fight every doctor I see. Thankfully, my husband has been a HUGE help. It's crazy, but he gets further with the docs than I do! If I want something done, HE has to call for me!! I'm 27 yrs old and I feel like i'm 12 sometimes.. hang in there!!

I am so sorry to hear that you are not doing well. It's hard to find the right words to say, but KNOW that there ARE other people in your shoes. You're not alone! I wish we could ALL meet face to face and just have a big group hug!!!! I have been going through a rough time too (not as bad as you). I know how much it can strain on a person... ESPECIALLY when people don't believe you. To me, that's worse than actually being sick. Just know that there are others who care and know just what you are going through. My faith in God is all that keeps me going (besides my family of course). I learned a long time ago, if a doctor "writes me off" as crazy, I do the same to them... "write them off".. It sounds like you may have a supportive PCP, which is WONDERFUL! I can't believe the doc told u to eat pickles!!!???? WHAT!!??? geeze. well hope something in this helps.. keep on fighting!!!!

I also gained weight and felt more "revved up". I also had trouble sleeping on it. I hated it!!

yes, I did try it and it was not effective, unfortunately. Thanks for the suggestion, though.

Speaking for me, my actual appointment with Dr. Grubb isn't until October of '08. But the receptionist there is very nice and said that we can call every week if we want to see if there is a cancellation. So, yes, it does take a while. Now, if you don't mind seeing Beverly (his PA) you could get in within a weeks time. My plan is to hopefully get a cancellation appointment for Grubb, but realistically will see Beverly and hope that Grubb is there/available consult that day that i'm there.. hope that helps..

Really? The doc at the mayo told me there was a connection between POTS and women who were once athletic.. hmmm different opinions I guess.

Can't help you out there. We're planning a trip sometime in May to see his P.A. but hopefully will get a cancellation to actually see him during that time.... good luck!

I wasn't diagnosed until October of '07. I have tried many beta blockers, Effexor, middodrine, florinef, salt tablets, and I drink about 70-80 oz of water a day.

Mine ws pregnancy onset as well, about half way through also for me. That was a year and 3 months ago and i'm still miserable....

My BP does not always change drastically with POTS. For me its mainly my pulse. but with POTS it should go up at least 30bpm within the first 10 minutes of standing. Mine goes up instantly.. usually from 50 bpm or so sitting to over 120bpm standing... hope that helps.