P SUDIK

I have POTS, and as long as I have had POTS (4 yrs.) I have had bladder pain,bladder discomfort,bladder infections.I also have feelings like the nerves in the pelvic area are exposed. I am having a cystoscopy Feb 22 ,my doc thinks I have IC.These bladder problems have been unbearable at times,I have had excessive bleeding,and in Dec. I also had kidney stone. I am having the cysto under general anesthesia(not crazy about that). Others on the site have told me I am better off being under,cause it is not pleasant. I sure hope the dr. will be able to help.Now when I have a flair up I take pain meds. and pyridium, it does help calm down the bladder. If any of you know of any things or meds. that help, please

let me know. As far whether POTS and IC are related,I cannot help think they are all my other seamingly unrelated medical problems,started when I got POTS ???? Pat

Hi everyone,Happy Valentine's Day,just wanted to say hi and tell you , here in Mentor, OH.[suburb of Cleve.] we are buried in snow and of course freezing. So warm thoughts to all Pat

Hi Sheridan, I too, have alot of trouble with meds. I really understand your hesitance to domperidone or any new meds. I have gastroparisis and did take domperidone,I really did not have any problems or side effects that I was aware of. One of my cardio docs. took me of it saying it was not good for POTS. Still not sure about that? My different docs. were constantly putting me on and taking me off meds to see if it helped with POTS. Taking me off of domperidone did not help my POTS and I feel it did help the gastroparisis. I hope this helped a little and did not confuse, good luck let us know what you decide. Pat

I 'm not sure if your voice has to do with POTs,but I always get hoarse after doing to much,usually wake hoarse, after a hard day. For me I always think "just another weakness in my system"

Pat

I have been dx with a moderate case of gastoparisis,seems alot more than moderate some days. I do have swallowing problems especially pills.Not had swallowing tests yet either.Does anyone have more trouble with pills than food and drink? Pat

Hi again,just wondering where you girls got your bracelets? I think it is time ,I need one

Thanks, Pat

Thanks everyone for your replies. I think I get it. Ok, so I have POTS, I think that means I have OI, right?, I guess it really does not mattter, Just trying to understand. I thought maybe if I had another name such as OI, it might help, since so many docs. are not familiar with POTS. Thanks, Pat

Yes Lauren, that does make sense,thanks. I did not know that some POTS patients do not have trouble with standing, that is one my main complaints. Thanks again, Pat

Can anyone tell me the difference between OI and POTS? I can't quite make the distinction!

Amby, sure sounds like POTS, my b/p does not always go down when I stand my h/r always goes up. Have you ever had ttt? Good luck with your dx! Pat

Hi everyone, I have been reading alot of different posts and relating so closely to so many. Anyway I really got a chuckle out of "12 docs of Xmas. Their remarks are unbelievable! Just wanted to share just a couple. One of the cardio's I saw told me to find a boyfriend and I would be fine. One of the endo's told me I gained a pound so I was Okay!Meanwhile 3 yrs. later, I am no better and still searching for doctors and answers. Take care, Pat

Hello everyone, I am having a cystoscomy ,they are doing it in the O.R. just like a regular surg.Last surg I had in Mar. of 2006[partial corpectomy],I went into CHF. Should I be worried, any precautions I could or should take? Thanks Pat

Rachel, I sure hope you get the help you need soon.I wish I did have some words of wisdom for you,but going thru the same thing,I need to see a new doc also,and cannot be seen until I have ttt again and several others. I am dragging my feet. Like you , after all that testing I am pretty much useless and ill for days.

Rachel, this is Pat again,I sent your message, before I was done ,sorry I do have one suggestion that may help?? I had the stress test ,that get an injection rather than go on the treadmill,is that an option for you? It is still not fun but maybe easier for you. lLots of luck and love Pat

POTS doesn't happen after heart viruses.

It's normal to have fluctuations. The more you look, the more erratic your readings will be- it's like biofeedback.

My lowest hr recorded is 17bpm and I am still here to tell the tale!

relax.

Hi I thought POTS could come from many many things , How do we it can't come from heart virus? Pat

I wanted to post an update before my computer gets sent away AGAIN to the fix-it shop. Grrrrrrr....thank goodness the fix-it shop for me is a friend of my dad's and he just helps out whenever I need. Last night, I was sick as a dog, listening to my iPod and it froze on me too! Am I jinxed???? Poop.

Anyways, this isn't about me....it's may latest update on Melissa...

I don't know too much.

She woke up on Friday with her throat a bit better, and was able to call and leave me a voice message.

She's trying the itty-bitty amounts of feeding. Not tolerating them so hot.

She's off of the antibiotics (SCARY!)--as she calls it...entering unchartered territory again.

Then, on Saturday she woke up with her throat really, really miserable, so can't talk again!!!! Yikes!

The good news: they figured out a way to put ALL of her meds through her IV lines and VOILA! they are working better than they have in months or even years. She sat up for a teeny bit yesterday for the first time in a long time.

That's really all I know right now!!!!!!

Today is FIVE weeks in l'hopital....Ugh.

Later alligators!

Love, Em

Melissa-----I hope your throat feels better soon and your back to talking in no time---

I'm so sorry you have to deal with that tube, but the tube can be a good thing in the long run. My mother had one once---as she also has gastroparesis secondary to diabetic neuropathy.

Melissa, I hope the gastric nasal tube helps you feel better. Sending you prayers and healing wishes.

Maxine :0)

I am so sorry for what Melissa is going through, my heart goes out to her,but more importantly my prayers. Hugs to Melissa Pat

In some of your posts I see alot of talk of exercise, what kind of exercise can you do? I can barely do what I need to do? Any suggestions?

Since I was diagnosed w/ POTS my weight went up...I went from being 5'8" and 123 lbs. to being 5'8" and 150lbs.

Jacquie

Hi all,very interesting discussion! I hate to say but I'm5'6 and very overweight, been dieting since I was 12 yrs. old.When I first got POTS,I did lose 25lbs., a year later 1 of my doctors told me to eat potatoe chips ect. all the salt I could get.Another dr. told do not diet, now I gained all the weight back and am dieting again,but I never feel well especially,because of the low blood volume.Any suggestions ?

I am also extremely pale

Pat

HI

I was pres levsin one time for ibs and i will say it actually caused me to start having very slowed h/r and skipped beats so if u have any of those already be cautious

HI,just wanted to let you knowthat Levsin gave me diarrhea,had to go off of it.

Donna Pat

HI

I was pres levsin one time for ibs and i will say it actually caused me to start having very slowed h/r and skipped beats so if u have any of those already be cautious

HI,just wanted to let you knowthat Levsin gave me diarrhea,had to go off of it.

Donna Pat

I've had lumbar surgery. Although the recovery was awful and worsened all my joint problems, I don't think it affected my autonomic symptoms. Although I had some minor presyncopal stuff before the spine surgery, it's really only this past spring (4yrs after surgery) that the ncs really hit me.

I also had a horrendous recovery, how are you doing now, back wise and ncs?What to you attribute your ncs to? Pat

Hi all,

I am interested in knowing, if there are any of you out there, that may have spinal surgery or spinal stenois?If so, did it bring on your POTS? I have had 2 Cervical surgeries and one lumbar, after the lower back surg. is when I got POTS and several other problems. Your input would be greatly appreciated

Pat

HI!

SO, latily I have been struggling with this friend of mine that I met a few years ago through my physical therapist. She moved a while ago so we only talk online and on the phone.

She also, has a chronic illness and has been through an awful lot herself, but has professed to be pracitcally normal the past couple of years. I am happy that she has found stuff that has helped her illness, but I still struggle ALOT every single day and she just doesn't get it. It's starting to really wear on me and I don't know what to tell her.

She gives me a hard time for using a wheelchair, saying I should learn to walk even if it makes me tired, thats what she did, but doesn't realize I FAINT!

She thinks that I should be able to go to college full time, just b.c she can and criticzes my choice to hold off a little and attempt on line class b4 I decide to go.

Plus, she says its pathetic that I am aware of my illness and that I talk about it, I'll say i've been "resting" instead of "hanging out" so what I am an honest person. Shes also says that I need to forget I have a disease and push through it. What she doesn't get is that my body literally gives out and I go into shock, her reaction is "Yea so?"

Has anyone had this problem ? Or any idea on how to deal with it without starting a fight?

Thanx

Madeline Madeline, I feel for you so much,I acquired POTS when I was 55 yrs. old.Before POTS I was very happy,active and fun, and now I am not.I got POTS after back surg and an infection.I had friend

say to me "you lost your sense of humor with your back surg" I lost alot more than that, nobody gets it.

So Madeline I know just how frustrated you are.I would maybe try once more to explain to your friend and

remind her she's so lucky to be better, but that does'nt mean you are!People tell me all the time 'you look

good' ' I am still very frustrated by friends and family's comments and reactions.I hope this helps a little

Love Pat

I'm about 6-9 minutes on an average day, 10-20 minutes on a really good day, and 0-5 minutes on a bad day.

Hi my limit is 10 min.,then my head and chest are pounding and I get tachy.Sometimes when I am walking, only a couple minutes,it feels like something is pushing against,making it hard to walk.Does anyone else have a similiar feeling? Take care, Pat

Thanks for all the suggestions! I do have an RX for the Midodrine 2.5 mg...I wonder if I could just take 4 of those at a time, since it would be easier. I'm going to have to check on that and see if I could.

Once again thanks!

Jacquie

I have the same problem and use a pill spliter on anything I can! Good Luck Pat

Hi guys,

Quick update, the covering doc gave me an RX for Zantac 300mg...Hoping this helps some. I have to follow up with my PCP so I'm hoping he has the notes from the Neuro I saw at BMC regarding the Gastric Emptying Study.... Thanks for all the helpful tips!

Jacquie

Jacquie so sorry you are having this problem,I suffer from severe nausea, the only thing that helps me is to keep hydrated ,which I know is so hard with nausea, I have had to get IV S to feel better,I know it is a drag. One of the docs told me even small sips of water help.

Hope you feel better soon,

pat

Lina,

Yes, I wake up tired all the time. I haven't had a day in almost 5 years that I haven't felt tired all day long. It doesn't matter if I get 8 hours of sleep or 12 hours of sleep. I am always tired and always weak. Many mornings I wake up at 10am or after, but can't actually get out of bed right away because I'm too weak. It takes my body a while to "wake up" I guess.

My best time of day is the afternoon. I'm neither a morning person nor a night person!

I have noticed that if I do too much one day that I pay for it the next day with extra weakness and fatigue. Of course, the definition of "too much" has changed over the years. What used to be a bad day, is now a good day.

I hope that answers your questions. And I hope you sleep well tonight and start to feel better soon.

Rachel

Hi Rachel, I know exactly what you mean about a bad day now being good.

Lina,

Yes, I wake up tired all the time. I haven't had a day in almost 5 years that I haven't felt tired all day long. It doesn't matter if I get 8 hours of sleep or 12 hours of sleep. I am always tired and always weak. Many mornings I wake up at 10am or after, but can't actually get out of bed right away because I'm too weak. It takes my body a while to "wake up" I guess.

My best time of day is the afternoon. I'm neither a morning person nor a night person!

I have noticed that if I do too much one day that I pay for it the next day with extra weakness and fatigue. Of course, the definition of "too much" has changed over the years. What used to be a bad day, is now a good day.

I hope that answers your questions. And I hope you sleep well tonight and start to feel better soon.

Rachel

Hi Rachel, I know exactly what you mean about a bad day now being good.

My normal everyday bad is now fairly good day. I think only a potsy