Jacquie802

Does anyone notice that when they get out of the shower their legs and feet have a maroonish color? What is that?

Here's something I found for you after doing a little research... You can get 4 free tabs with this, I know it isn't much but it's 4 more nights of sleep http://ww2.lunesta.com/sepracor/run/lunest...nesta-trial.jsp I hope your doctors can find a way for you to continue to take the meds. As if dealing with POTS isn't enough you at the very least deserve a good nights sleep.

Hi, I am going to keep you in my thoughts and prayers. You have helped so many of us out of rough times I hope our prayers, etc. help you. Take care and I'm here if you need me...it's your turn!

Hi, hope everything went good today and I hope you find some answers. Keep us posted when ur feeling up to it.

Hi, I am in the same boat as you, except that I have applied for SSDI, which takes months to get. I have gotten all the medical records myself and have personally dropped them off to the SSecurity office that way I know they have gotten them. It stinks that there isn't much to help a person out while they are waiting on a decision from any type of disability ins. A monthly income can stop for many reasons, however, out bills won't..All I can say is to hang in there and I hope we both get the outcome we are looking for!

Hi, I suffer from vestibular hypofunction. My hearing is bad for a 21 year old. They said they think that I had a viral infection in my left ear that caused nerve damage which then caused the severe vertigo I suffer from...as if the whole POTS ordeal wasn't enough!

Congrats!! How was the plane ride??? I often wonder how a plane ride would effect us POTS ppl. Anyhow, good to hear you and your family had a good time!

Just realized I joined this forum exactly a month ago. I am glad that I have found you guys. It's nice to have ppl around for your ups and downs, esp. people who understand. Thanks for being here! Jacquie

Thanks everyone for all your advice, etc. I appreciate it very much. I got the results back from the vestibular testing I had to get and it says that the test I did have "suggests a balance disturbance of unclear origin." So I am sure that doesn't help along with the POTS. Maybe that was why I was dizzy during certain points of the TTT. Anyhow I am going to Mass Eye and Ear in Jan try the other part of the test I couldn't do (instead of having me in a small pitch black room, im clastrophobic, they are gonna just put dark goggles over my eyes) and then in March I see the actual doctor...atleast I am going to have some type of results. I see my neurologist Dec 14th and my cardiologist Dec 15th so I am going to mention about the bb. Maybe they are gonna do the test again...one good thing would be that cute boy who did it! That was one positive thing from the TTT!!

Hi, I don't know what more to say because everyone has given excellent advice. However, try calling your psychologist and if her staff answers ask to have her call you back. Explain your situation maybe you can just talk on the phone for a bit (sometimes letting it all out for a few min. helps) or she could bill you your co-pay. We are very strong ppl here on this board...you don't think just anyone could go through what we all are going through on the board do you?? So keep your head up and know that we all understand...

Hi, I can relate with you about bills. I didn't have any insurance last year for a while because I couldnt work and was waiting to get approved for some type of insurance (didn't happen). I am still paying thousands of dollars worth of hospitals bills. Not like we asked for any of this!!

14 DAYS...OUCH, how could you do that? If I'm off my bb for more than a day my heart rate shoots through the roof!!!

I didn't take my Toprol XL today, but I took it last night, I wonder if it would still be in my system since it is time released. I just took today's dose a little while ago....

Hi, nope I was still on Toprol because when they try to stop it I get sick and go to ER, they never told me to stop taking it either. I am just really agravated, it's almost like I am crazy or something....I thought I was gonna get answers but I guess not today. I see my neurologist the 14th so who knows...I really just want to cry cuz I felt soo sick the other day I was sure today they would see it for themselves...guess not

Okay so I had the TTT today and during the test it didn't seem like my bp was too bad or even fluctuated(watched the monitor, ) that much but I felt the dizziness,sweats, etc. My heart rate was high at some points, but I am so confused. I don't think it was a posittive test but why did I experience the symptoms. My bp today wasn't bad at all, but the other day I went to the doctor and it was very low, so what's the deal?? I really just want to know what's wrong with me Thanks, Jacquie *I did have a very handsome guy do the test

Hmmmm...wish I had the same luck with alcohol lol...My doctor told me to avoid it because it is a vasodilator and would lower my bp.

Okay that sounds good to me....it is frightening esp when I am feeling dizzy/lightheaded too.

Tomorrow I have another tilt table test...let's hope they can find some treatment for me and my low bp!!

If you read my post from last night you'd know that I was having a rough night...It ended up getting worse as the night went on. In addition to having a stomach ache I was feeling dizzy, lightheaded and alot of tachy. However, this is the weird part....has anyone here ever had their heart go tachy, then it feels like it has stopped??? When it felt like it has stopped I had this weird reaction type thing. It was almost like when you are falling asleep and your body catches itself and you jerk a little bit and wake up....that's the feeling I got. Very weird. I have had 3 EP studys, which 2 were ablations. The docs know I have probs when some reentry SA node type thing, SVT, and found a few PVC's...I am really concerned about what could cause my heart to feel so weird. Then my legs had barely any feeling but it would disappear after a few minutes, and 10 min later I would get the weird skipped beat or whatever it is going on.....If anyone has any ideaes what this is all about I would love to hear!! Oh I am on Toprol XL 25mg if that helps!

Congrats Nina!!! It's great that you finished the whole race...your an inspiration to all of us here on the board and I believe if you put your whole heart into something anything is possible!! Oh, and enjoy your ice cream!!!!!!!!!!!

Ahhh, why can't good days last forever??? Today I am paying the price dearly... Laying down and I feel horrible, I should have known this would happen but oh well, I still enjoyed yesterday. Anyhow I havent' been able to get ahold of any of my doctors (can you believe that?!) and I am supposed to get flu shot tuesday. Also, I wonder if something is going around I have a cough, sore throat, not sure if I have a fever, but I am feeling horrible, esp. my stomach. I do have some type of GI probs, they were going to do a colonoscopy but decided to wait because I guess it can mess up your heartrate?? That's what I was told anyhow, does anyone know what the risk would be between the heart rate and a colonoscopy???

Hi, guys I just wanted to share a major accomplishment with everyone here....today I went to Walmart and was able to be in the store without too many probs....I was only in there for 20 min. but I am soo proud of myself!!! I started to get dizzy after the 20 mins. but that is the longest I have been in any store that long in a looonnng time.......I decided to get a pizza to celebrate, lol, it has veggies on it so it's not all too bad, atleast i don't think so I do have a POTS related question though, does anyone notice that they get full off of hardy eating anything....Feel free to laugh at me cuz I did just post a message complaining about gaining 21 lbs..... but really I was completely starving ate half a piece of pizza and now feel sick to my stomach...Oh well, it is a good day anyways!!!!!!!!!!!!!!!

HI, IM WONDERING IF IT MATTERS THAT YOU SPLIT THE PILL UP BECAUSE IT'S EXTENDED RELEASE...?!? ANYHOW I WENT TO MY PCP TO HAVE MY BP CHECKED AND I HADNT EVEN TAKEN THE 50MG ONLY 25 MG AND MY BP WAS LOW SO I HAVE TO CALL CARDIOLOGIST AND SEE IF I CAN JUST TAKE 36.5 FOR NOW....I DO NOTICE AT TIMES MY HEARTRATE IS LOW, BUT THE TACHY IS OKAY MOST OF THE TIME...

Yes, I got some type of viral infection then on my 19th bday I was rushed to the hospital for my heart. That's where it all began, but to answer your question everything seemed to have started around the same time...i kept getting rushed to ER due to my heart and symptoms, but I dont know if the symptoms were because my heart rate was so high or it they were autonomic probs....

Hi, I am in the same boat as you. It's hard for others to understand what they don't have, it really is. Have you already applied for disability or are you just thinking about it?? I recently lost my job because I kept missing work from not feeling well. Also, I am only able to work for 3 or 4 hours at a time, and that's if I am having a good day. I have tried to work and just sitting up for extended periods of time make me faint, pallor, sweats, tachy, etc. I know everyone knows the symptoms, etc. I didn't know migraines were caused by POTS too. I have been just recently getting severe migraines, but I'm sure the added stress of bills, etc. doesn't help....The best advice I can give to you is if you haven't applied for SSDI and think you are going to need it then do it now...It is a very long and irritating process and from what I have read most ppl have to appeal the decision to get approved....Good luck and keep updating..