Jacquie802

Hi, I definately can relate to your supermarket symptoms....I don't even bother going to the mall anymore I have to shop online. I don't know why but I get very sick in stores, wish someone could give a reason, lol!

Double whammy here! My first question is has anyone here applied and gotten accepted for disability for POTS?? If yes could you tell me if you were accepted the first time or denied....I have seen 8 doctors and been to 4 hospitals, but who knows....as for the ear testing I only made it through one of the tests cuz of my clostrophobia and the doctor said since I didnt make it through the other tests his results are inconclusive.... Second question is which doctor would I discuss the flu shot with...my PCP doesnt know much about my condition, I see a neurologist as well as a cardiologist for the POTS...? Thanks guys!

Hi, I am on toprol xl, it doesnt necessarily cause the weight gain per say but it causes the fatigue which causes me to be inactive. All I drink is water now no sodas, etc.

So, I went to the doctor today for my bp which is okay, and found out I have gained 21 lbs. in the past few months!!! I'm tall so my doctor says that it's normal for my height, etc. I really don't want to have all that weight on me, besides the fact that none of my pants are fitting too good these days...Can't really do much exercising, esp because of the dizziness and fatigue....What is everyone's opinion,etc. about what to do next? I don't want to put on anymore weight.

Have you gotten any results yet??? Hope all is well.

Hi everyone. This post is basically me venting about this lovely thing we all have...POTS...I hate being negative because I know there are alot of ppl on this board alot worse off, this is just the only place where ppl can truely say they understand. I have lost alot of friends because of this illness. Sometimes I can't really blame them...I usually am never feeling well enough to go out for long periods of time. Eating at restaurants makes me dizzy and lightheaded, w/ palps, etc. you guys know the deal. Forget about going shopping, because that's completely out of the question...Then there's family...just because some days I don't look sick ppl think I'm feeling great. Just yesterday I was told to leave my house, because I am supposively fine and just don't want to do anything. I guess I basically am really good at faking test results (ablations, ttt, heart monitors...)don't ask how, but I guess that is what ppl think. I even had an old friend say I am fine....scary thing is she is premed, definately lacks ppl skills though. Sooo, now I am jumping around staying with relatives day after day with no permanent place to stay. since I can no longer stay at my house. I have applied for disability but that takes a long long time to get on, most likely be denied first time around anyhow. I have gone through what little saving I had and I don't want to borrow anymore money from ppl, esp. since I don't even know when I am going to be able to pay them back.... Thanks for anyone who decides to read this whole post. I am thankful for you guys being here, the fact that I do have a family, and thankful for what few friends I have left...I know things could be alot worse...they just really do stink right now. Anyhow thanks again for being here I know there are ppl out there who understand.....Take care guys!

Good luck with the race! I was never good at running....

Where you on the smallest dose?? Maybe if you are on a small dose they just stop it?? That's what they did with me, lol, but I hadnt even been on it that long. The headaches were just too much for me, too bad I still get them

Your right it's about time something good happens....CONGRATS!!!!

Hi, sorry to hear that you were in the hospital. This may be a silly question but what is a port???? Is it how they give u fluids?? or meds??? I agree with starting the disability. I had huge problems with my last employer and I am waiting to get on disability. I hope you feel better and get to go to the bathroom soon!!!!! Take care and keep us updated! Jacquie

Another tardy birthday wish!!! I hope you had a great birthday and got awesome presents!! LOL Thank you for all of your help, you have been sooo very helpful and although POTS stinks, I'm glad I found you here.

Hey, I'm sorry you are feeling so crappy. Wish there was some sort of advice I had to offer you....I hope you feel better and plz keep us up to date on how you are doing. Take Care, Jacquie

If my bp gets too low do you think Florinef (if i dare to try it again) would bring up my bp even though i am taking beta blocker???? Thanks again guys, sorry for being a pain!

Hi, sorry to be posting too much. Anyhow for the past few weeks I have been getting episodes that haven't occured as often but are alot more severe. (palps and tachy) I left a message for my cardiologist a few days ago and they just called back today and have decided to INCREASE my Toprol from 25mg to 50mg!!!!!!!!!!!!!!!!!!!!!!!!! a day. I think that is a huge jump! Esp. since my bp stinks. He said that he talked to my neurologist who I see for the POTS as well my vestibular hypofunction, etc. and said that I should be okay, but that he wants me to go see my regular doctor for bp check ups weekly. My questions are... 1. Would insurance cover the cost of a blood pressure reader so I dont have to keep going to the doctors (my insurance is running out soon). 2. I KNOW no one here can tell me what meds to take and/or how, but I am looking for ppl's experiences... if anyone has adjusted their meds. Ex. taking 36.5 mg Toprol instead of 50mg to see how that affects me, it just seems like a 25mg jump is an aweful lot for me, esp with my bp probs. 3. Also does anyone get dizzy spells or notice them more when they are driving?? Thanks for your opinions!!!! Jacquie

Hi, I have seen doctors from both Boston Medical Center and Beth Israel Deaconess Medical Center. Both have great doctors there. I am currently seeing Dr. Gibbons and Dr. Freeman @ Beth Israel. Dr. Freeman takes about 7 months to get into. Hope you find a great doctor!

Hi, welcome to the board!!! The symptoms you described could be anxiety, POTS, etc... I agree with Poohbear and think you should get a second opinion as well as a Tilt Table. Atleast that way you can have some test results to work with. I too suffer from hypotension and I am on Toprol XL 25mg which has been increased to 36.5. The low dose doesnt seem to control my arrhythmia as much as I or the doctors would like it to though. I do feel dizzy alot but I also have ear problems as well at POTS so the beta blocker just further aggravates it. I try to drink alot of water throughout the day, I really think water is the best thing to help low bp. Salt seems to work for ppl under the supervision of a MD of course, but that bothers my ear problems for the time being. Keep us updated as to what comes along.....

I'm glad the surgery went okay for you, hope you have a speedy recovery!!

Boston is great, it really is. However, the hospitals in Plymouth, MA aren't as great obviously. Usually when I tell someone I have POTS they get this disturbed look on their face, lol. So I dont even bother anymore I tell them I have low bp, but then when my heart goes tachy my bp skyrockets....I love the doctors I have in Boston, my neurologist is the best out there. It's the ER doctors that don't understand, I have an awesoem cardiologist in Plymouth who is the first to even suspect POTS, so I guess it really depends on the ER docs and whether or not you are lucky enough to have one who has experienced a person with POTS.

Hi, does anyone know of any exercises that could be done with out too much exertion?? Most of the time I am feeling dizzy and so forth but I keep putting on weight and want to at least be able to tone my muscles...To be honest ever since I had heart probs. I stopped working out and gained 20lbs. I'm not overweight 5'9" 140lbs but I would like to lose some weight.

Wow, I think I know what you are talking about but I don't know. Do you feel faint before it happens?? I never had that happen to me, but I am interesting as to what it could possibly be.

Yeah, I have a prescription for Meclizine, but I don't really want to take it since it may even cause dizziness. I also have low bp so I wonder if it would make my bp lower?? Hmm...thanks for replying tho i really do appreciate it!

Ahhhh another lovely thing to thank POTS for!!!!!!!!! It's weird though because when the EMT's / Paramedics come no one even knows what POTS is!!! SO I don't even try to explain it to anyone, even the hospitals around here barely know. That's why I go to Boston for all my medical treatment, since it's only a half hour away when there is no traffic!

Hi, I'm not really sure what to tell you. I know a few hours before my heart goes tachy sometimes I can "feel" it coming on if you know what I mean. I hope you feel better. Sometimes I have a nice glass of ice cold water. I don't know why but it makes me feel better when my heart is racing. Do you have any meds you take?? If this is a new symptoms I would give your doctor a call or visit to just to touch bases. Feel better soon!

Good luck with school seems like you have alot on your plate! Is this your last year?? <---I'm sure why that posted 8 milion times tho!!!!!! I am trying to get into some online classes for accounting...hey since I am sitting home alot these days might as well do something productive right!!! I want to go to RN school but the way I am feeling who knows when if ever I can do that. I hope you are feeling okay and I can completely relate with you about the whole family thing... one of my old friends started saying that there is nothing wrong with me, etc. I don't wish this upon anyone but sometimes I wish for one day ppl could experience what we have to deal with EVERY day. I know there are alot of ppl worse off than me esp. on this board. I have no idea how everyone does it.....sorry I went off track! Good Luck with school, but I don't think you really need it, you seem to be doing great! Take Care.

Has anyone else noticed that when they have a tachy episode that their usually low blood pressure sky rockets??? Why is this??? Then it goes back down a little while after the episode.