Jacquie802

Hi, I have decided to try exercising, obv light exercising . I haven't really done any exercising lately because I haven't been feeling well along with having the vertigo and dizziness. Does anyone have any tips for me?? Do you tend to have bad symptoms at first during or after working out?? Also, I am out of breath and my heart rate jumps up just going up a flight of stairs, so I am going to start out small..If anyone has any pointers I'd greatly appreciate it. To be honest I am a bit nervous about it because I don't know how I am going to react to exercising (heart, breathing, etc.). I figure I might as well start because I don't want to gain more weight than I already have and more importantly I don't want to lose any tone I have left Jacquie

Hi guys again! I found a nice quality recumbent bike for $110.00 OR if you have it shipped it would be about $148.00. If you wanna know where PM me. Jacquie

Hi, I get those symptoms too. Usually my heartrate is high for a little while then I get stomache pains and have to use the bathroom. I don't know if they are connected by any way, but I notice that once the heart gets tachy sometimes, not all the time I get stomach probs that night, or shortly after. Jacquie

Hi, sorry to hear you are feeling horrible. You should try to get some popsicles, maybe you will have a better time keeping those down. Do you think you could stomach some hot decaf tea? When I feel sick I have hot water and sugar, as weird as it sounds it helps alot. That is what my great grandmother used to do and it really works for me. The mylanta also helps me, but that's when I got a stomach ache. I hope you feel better and find something that works. Jacquie

HI Nina, what type of teacher are you????? Anyhow, I agree with the others, def get alot of rest so you can ENJOY the holidays!!! Jacquie

Hey guys! Does anyone else have a problem with dizziness getting worse when they are in public. Like tonight I met up with my sister for her dinner break and we went into a restaurant which wasnt busy at all. However, 15 minutes (if even) into the meal I felt soo dizzy and weird I thought I was gonna faint. It got better when I went out to my car. It didn't completely go away but it wasn't as severe. I'm not sure if this is more related to POTS or my ear probs either way it stinks! Jacquie

Yeah, the subway would def. cause my vertigo and dizziness to occur. Sometimes I can't even stand up let alone drive when I am feeling horrible.

Hi, my neurologist as well as my cardiologist here by my home agree with the whole disability process. So I have their support. Some doctors really are ignorant, I guess since they aren't dealing with a disability it's not their prob...Don't get me wrong, I dont mean to act like all doctors are like that, because I def. do have caring doctors....Anyhow, I dont see this cardio anymore I am going back to the cardio I started out with in Boston since he knows all about my condition since day one. Jacquie

Hi, I have SVT as well they think it is some re entry SA node type of deal. I have had 3 EP studies and 2 ablations. I am currently on Toprol XL 25 mg but they want to up the dose, I dont' because of my low bp. The meds seem to work for me good for a few months then as time passes by they seem to not help. Anxiety makes it much much worse. I know it is scary and for a long time I wouldn't leave my house for fear of having an episode, but don't let it run your life..I hope you find some meds that actually work. I am still waiting for that magical pill that actually works for more than a few months! Sorry I couln't be more help, hope you find some answers that youa re looking for as well as a treatment that works for you. Jacquie

Nina, I'm glad they found out what's wrong, but I'm sorry you aren't feeling well. Hopefully you are all better by the end of the weekend if not sooner. I'll keep you in my thoughts, take care. Jacquie

Nina, I hope they find out what is wrong and that you get some treatment so you can feel better. Keep us posted!

Hi, I do not have your eye condition, but I do have blurred vision and my eyes fill up with black dots until I can't see out of them.

I'm not reallly sure how they are different, but I noticed the recumbent bicycle is lower to the ground. I'm guessing it's better for our low blood pressure??

Julie, I hope you are at the ER getting some treatment. Feel better soon!

Good Luck!!!!!!!!!!

My neuro suggested that I try using recumbent bicycle. I don't have the money to join a gym and I think it'd be silly just to join for a bike. Does anyone know if they are expensive to buy? Just trying to figure out how I could get to one!

Congrats on your approval!!! I have had countless "breakdowns" or whatever you would like to call them, lately. How did you get through all the waiting, etc. I have done everything I can it just stinks that it takes soo long. I hope I have the same luck you did, well not that any of us are lucky to have POTS..or to go through the long disability process...you get the point! CONGRATS once again!

Hi Melissa, I understand where you are coming from, but I don't even have the money or any health insurance to pay for them either . I am always hot, even in the winter I barely ever wear a coat, so I don't think they would do me much good anyhow. I told my neuro that I'd drink lots of water like I am now and he agreed with that. If I thought they'd help me I would give them a shot, but considering the price of them I prob won't anyhow. Also, you did not come across as harsh, I like hearing everyone's opinions!!! Jacquie

Hi, my PCP is from my home town. I'm not sure if as many PCP's know about POTS as do neurologists or cardiologists. I know my PCP doesn't konw much that is why I go to Boston soo much!!! Jacquie

There is soo much to do in Boston, atleast you will never be bored!!!!!!! If you need a doctor for your POTS I have a really great neurologist here. There are quite a few to choose from that deal with POTS!

I'm so happy things went good for you today and you are going to get some answers! Keep us up to date!! Jacquie

Thanks guys it went alright. I made a post about the aptmt. Jacquie

So, today I went to see the neurologist and I had to get a copy of my records to give my new cardiologist. (Well, the cardio isn't new but he is the old one I used to go to and I am going back to him, since I am not a big fan of the cardio I have now or his assistants... ) Anyhow the neuro thinks my ear probs are def making things worse so I go Monday to get the rest of my ear tests done. The one ear test I got done shows that I have balance disturbance (fell 3 times during the tests). So, as I am reading what the neuro has in his notes it says he suspects I have neurocardiogenic syncope. I'm confused becuase during the last TTT I had I didn't pass out but I also didnt stop taking my Toprol. Hmm I am just soo very confused! Advice is welcome!!!!!! Thanks guys! *Also my neuro suggested support hose??? I declined. Does anyone here use them and do they really help? Not to offend anyone but I think I'd feel silly wearing them, I have heard of the elderly using them but not younger ppl. Jacquie

So after passing in my disability report one of my doctors says he doesnt feel comfortable filling it out. I dont know if it's cuz i have only seen him 2 or 3 times, but it would have been nice of them to tell me a month ago when i dropped it off. I cant work. Who wants to hire someone who has a hard time seeing, feels like they are gonna pass out all the time, and who has to lay down every few hours. My other doctors filled it out, but this one is giving me a hard time??? I have an aptmt friday and i dont even want to see him now, I know they are gonna give me meds that I have no money to pay for. Oh well....

Hi, I am from Bean Town aka Boston, MA. I love it here and wouldnt wanna live anywhere else. Boston is where I go for my POTS and Boston has the best hospitals, most are teaching schools. My friend goes to BC and she absolutely loves it. I personally would prefer to be in a city, so that is anything happens I'd be near a hospital that has heard of POTS lol. Which ever choice you make I wish you the best of luck! * I am heading to Boston today and Friday, but if you have any questions feel free to PM me about anything. Oh and we get snow here!!!! Jacquie