runningshoe

Hi all, Just wondering about if you are able to exercise, how long can you last before you feel symptomatic? I know many on this site can't exercise.... Wishing everyone a pots free day! Thanks!

This crash will pass, wait it out and see. If you got on top of your symptoms once then you can do it again!

Yippeeee!

I have IC as well. I had it in my twenties and then went into total remission for years. After pots hit me last year the bladder problems returned. It is so hard to have multiple chronic conditions. If I am not potsy I am probably having a bad bladder day. I did instills way back when but got know relief. The best thing for me is the Elavil for pain (small dose everday). The pain was so bad last year that I was taking percoset as well. It takes time to get on top of a flair. I recommend a bland diet for a while, and some pain relief if you can get some meds. It will pass. It will come and go. Worrying makes in worse. Put on your pjs and take care of yourself. The ic-network website is great. Other possible causes of your pain could be infection or kidney stones. I also wonder about the neuropothy component....The high salt diet can't help either. You are in my thoughts and I am sending you healing wishes.

I cried - it was hard for me to watch - I also had "the lights go out" while driving. My hubby was snoring next to me on the couch - that didn't help much!

I think this is an example of what is so hard about this illness....we can't even assume we can run out into the cold without bringing on symptoms. We never know how our bodies will react to anything! I hope you are toasty warm as I write this!

Hi I am having weekly bp and hr checks at the Cardio (I think they call it checking my posturals) because I was feeling funky and regular 6 month check up had my bp dropping when I stand. Today during the standing portion (5-6 minutes?) my legs started to feel wierd, I wanted to lie down, grab something to hold, etc, (the usual if I ever allow myself to stand still) but my bp didn't drop, it went up from my sitting bp. My hr went up 20 points. ( With florinef and betablockers it shouldn't move much more.) I am rambling but my question is - I felt quite symptomatic even though my bp and hr weren't typcial pots. Do any of you experience symptoms when you numbers aren't looking so bad? I feel like my pots is constantly changing and old symptoms calm down and then new ones pop up. A 15 minute check in the dr office is just that - 15 minutes out of a day when I can feel so many different things....Just checking to see if anyone else is as confused as I am!! I feel like a puzzle, the pieces are in place but someone is about to turn on the ceiling fan.....UGH! thanks, Lina

Hi This may not be relevant or even info that you are looking for but, I developed pots years after having kids but only two years after a hysterectomy and taking lupron. Again not pregnancy related but certainly hormonal!!

I bloat - I think POTS makes me that way. From what I read on this site almost 30% of potsy people have GI symptoms.

Sounds like blood pooling to me. Sleep and rest is probably what you need. Congrats on the baby!

Did you feet get cold during the night? Sometimes the combination of my poor circulation and the cold will make my toes numb. I hope it gets better!

I have visual stuff too - but before pots I did not. I have to believe they are connected. I can't deal with any flashing or flicker lights. If I move my head to quickly I feel sick. If I close my eyes I see a lovely light show....

I LOVE CURVES. I went from running everyday to passing out in my car and being told no more exercise until we know what is going on. When I was ready to start exercising a friend suggested curves. You can do as little or as much as you want. The music is loud but I can handle that in the am. I started out really slowly and took comfort in the fact that there were people there keeping an eye on me and lots of mats to lie down on!! I have been going 3 times a week since May. In the beginning I could only do curves on days when I didn't need to do much else. My stamina has increased and my mood is always lifted when I leave. If the arm machines make you sypmtomatic you can skip them - you can do whatever you want! The funniest thing is they have you check your heart rate every ten minutes or so and in order to do that you have to stand still - a big no no for me. Plus with the beta blockers working my heart rate doesn't change too much. Believe me - I was deconditioned when I started and I am much stronger now. If you can - go for it!

My Dr recommended acupuncture but I have not made an appointment yet.

I have been having GI problems as well but my dr thinks it is autonomic related. Doesn't it seem possible since the GI tract is controlled by the autonomic system and that cleary is not working right if you have pots? I have posted several times about this because I am trying to figure it out as well. I never had GI problems before POTS. Somewhere on this site it says that about 20% if pots patients have GI issues. Maybe it is a combination of a faulty system and food intolerance issue.... I think it is terrible that your dr said there is nothing that can be done about it. There is always something to be done even if it is just something simple! My dr said that if your bowel is overly sensitive and then you add in an irriatant that normally would not be a problem, you can stir up trouble. Everything plays a role, meds, drinks, amount and kind of fiber. etc. I have noticed that small meals, really help me. Rich fatty foods make me worse and things like nuts don't agree with me anymore. I am sure that you can find some relief.

I have had it too, and pressure behind my eyes as well. Hang in there!

Pots friends, When your most basic functions, breathing, standing, peeing, etc. are compromised it undermines your whole state of being. Who am I if I can't breath, stand, walk, sleep, use the bathroom, etc.... I want to be free of these limitations and trust that my body will carry me through this life. This is a lonely illness because unless you have ever had trouble standing, breathing, (keeping blood flow to your head!), you just can't understand how basic these functions are. I see healthy people complaining and I want to say knock it off, at least you can stand in one place when you need to! I have three kids so I am grateful that I can still do as much as I can. It is never enough. I am realistic but still hope for improvement. So, Tearose, from my home to yours I send you understanding and healing wishes. Lina

Hi Sandy, I was diagnosed a little over a year ago. Give yourself some time to figure out what you can and can't do, what helps and what doesn't, etc. You will have some ups and downs but hopefully with the salt loading etc. you will see an improvement. I have found this forum to be helpful and comforting. Many of us look well on the outside so it is hard to find support from those around us. Hang in there.

My watch has 5 alarms and I can set them to remind me when to take pills. I also have a pill container on my keychain (from cvs) and that way I always have what I need with me when I leave the house. The one that I have trouble remembering is my patch. Lina

So well written I felt like I was there. Wow, I hope you can laugh instead of cry because that visit sounded pathetic (and what is up with the stockings?)

When I don't feel well everything is overwhelming. Can you pick one tiny task to do a day? Can you make a "I will think about getting rid of this" pile but then just focus on the things you feel okay about doing, organizing, sorting etc. Some tasks are too emotional and I don't think you should force yourself to do them until it feels good. Last year when I was super sick and depressed lots of people suggested I work on my kid's photo albums. No way! I couldn't bear to look at their baby and toddler photos. I just couldn't handle the memories without getting totally nostalgic and then slidding into sadness. Keeping things simple is always a relief for me and getting rid of clutter usually boosts my spirit. Just take it slow! Lina

Last year my hubby gave me a seat warmer for the car - it plugs into the lighter thingamajig. This year I splurged on really comfy and warm boots. The right gear really makes a difference! Tomorrow is supposed to be in the negatives around here, yikes!

Happy 2008! I hope we all get some relief this year! My GI issues are really BUGGING me. I don't know who to turn to.... Primary care dr doesn't keep up with my health stuff, Pots dr is a cardiologist and not as familiar with other sypmtoms and I don't have a GI dr (yet). I need to find one who understands pots and I also have IC so there is that component as well. It seems the only way to avoid being bloated is not to eat. Hmmm, not an option. Do most people with pots have GI issues? Any advice as I move forward and try to figure out what is going on. Thanks!!

Sending you health and happiness wishes for 2008! You deserve a break!

Hi I hope 2008 brings health and happiness to all.... I am on a bb, Nadolol. I am hypertensive without it. It took awhile to get the dose right. Good luck and keep us posted!