Frustrated..Need To Vent

[KLK1305]

Okay.. I am so frustrated beyond belief and I have no one around me who understands and I know you all will. I have POTS/NCS. I am currently doing cardiac rehab 3x a week. I do three different machines @ 10minutes each (although it takes me over two hours to do that lol). I have been doing this for almost a month now. My doctor at Cleveland belives in it (though many doctors I have either talked to or seen comments online do not believe in it). I am not saying I necessarily believe in it or don't because I feel like crap no matter what I am doing.

The nurses at my rehabilitation center are absolutely amazing and so kind to me, I could not be more greatful for that. BUT my problem is I am so tired of going in there 3x a week and hearing, "Oh well your blood pressure is normal. That's good" when I walk in looking like a zombie and feeling like the living dead and passing out every other time I am there. It's like after a month they still don't get that I don't have a "normal" blood pressure. I can walk in @ say 94/65ish and pass out. Or I start out at that reading then drop into a systolic reading of 60 and pass out (when you are supposed to go up in bp when you work out but mine drops).Or for instance like last Wednesday I started out at my 90/60ish, shot up to 150/80 and then broke my own record and passed out 3x in 45 minutes when I was coming down and then I stayed at 114/82 for almost 20 minutes then went down into a systolic reading of 90 and passed out again. And my heart rate is spastic as well. It can be in the 70's or 120's or not even register on a machine because its so low.

I am just extrememly frustrated. I have been down since February (felt okay in July) and I guess it's just kind of all coming down on me right now. I am just really missing being a normal 23yo right now.

[lieze]

I don't blame you for feeling frustrated.

Is it possible that you review all of this with your doctor and ask him if he thinks in your case this is really helping you at this point or whether maybe your routine needs to be adjusted?

If I was going through what you are I would want to know where they are going with this?

Maybe you need something less strenuous.

[Brye]

I do a cardiac rehab maintenance class 3 times a week. I get frustrated as well by some areas that don't seem to get better. I'm light headed almost the entire time I'm there, especially when my HR speeds up. I'm exhausted the rest of the day, nap is mandatory on those days and that's not always an option because I have 4 kids. I am however much stronger than I was when I started. My knees don't ache anymore and I feel like if I were being chased by a bear I could actually run. Stairs are easier for me because of it. You need to figure out if you're improving in any area. I still faint and my vitals aren't near perfect. I still need my meds to control my symptoms, but I'm getting stronger. If you can't find one area at all you're improving in it's time to change the work out or find someone else who can help. What equipment are you using? My favorite are the sitting ones. Less painful if I do pass out and I can work harder without the fear of falling!! Good luck. Not sure what's best for you, that's something you're the only one who can figure out but I sure understand your frustrations!

Brye

[lieze]

I'm surprised they work you girls to the point of passing out.

They don't seem concerned about this or it is normal?

What do they say about it?

When you come to do you continue your work out or are you done for the day.

I must say you ladies are troopers. At the first sign of any lightheadedness or anything that does not feel right I hit the deck here.

[Heiferly]

Can you talk to your supervising doc at cardiac rehab (or your cardiac nurse if that's who decides what your exercise program there is) about your concerns? It sounds like maybe your goals there need to be revamped a little?

When I did cardiac rehab I never did manage to graduate up from the recumbent bicycle to any of the upright machines, even though other dysauto patients they'd had there in the past had done other machines (even the treadmill). Things have to be individualized to what each of us can tolerate and what makes sense in each case. I was still fainting from time to time just using the recumbent bike, and they were still having a tricky time keeping my HR in my target range on there, so that's where I stayed!

Here are some tips that helped me make progress over the time I was in cardiac rehab:

1. They kept a "crash mat" (gym mat) right next to the machine where I exercised, and always reserved a bike RIGHT next to the nurse's station for me so they'd be ready to assist me down onto the mat if they saw from my EKG that I might be about to faint. If my HR got too high, I was told to slow down (or stop as the case may be). If I looked "fainty" (skin discolored either flushed or pale, eyes glazed over, speech slurred or not able to clearly answer questions, etc.), they put me down on the mat before I had a chance to actually faint, and elevated my feet.

2. We found that a REALLY long and slow warm up and cool down period significantly extended the period of time that I was able to tolerate exercise, and cut down on exercise intolerance. I mean about 10 minutes of going *painfully* slow, like barely moving slow and really gradually building up to actual exercise. Another 10 minutes of really slow, gradual cool down. Very, very, very boring but it did seem to help a ton.

3. I cannot overstate the importance of my 40-50 mmHg thigh-high compression stockings. I only forgot to wear them to cardiac rehab once, and it was a total disaster.

4. Powerade Zero and I were also best friends throughout cardiac rehab. I tried my best to drink, drink, drink whilst working out which also seemed to help (except for making me have to pee too much). The downside of this was that I noticed my BP would shoot up whenever I got a full bladder and I'd have to stop to use the restroom or else my BP/HR would start to go haywire. Weird ...

All that being said, I'm surprised they let you work out when you started with a BP of 90/60ish. Was that sitting or standing? I don't think I would have been allowed to participate if I were having that bad of a day, unless I sat and rested and drank something and managed to get it to go up somehow first. Also, did they really let you keep going after passing out on some days? Are your HRs being monitored just on the machine, or are you on telemetry and the nurses watch your EKG on a screen to monitor you? What target heart rate range did they say they want you to stay in when you got your evaluation for cardiac rehab (because it sounds like your HR is bouncing around a ton)?

I'm sorry you're having a hard time with it. I really enjoyed cardiac rehab and I think I benefited a ton from it; it sounds like maybe they're just having you go for too much all at once instead of pacing yourself. I hope you can talk things over with your doc/nurse there and see if you can re-evaluate your treatment plan to something that's a better fit for you.

[KLK1305]

Lieze: I see my cardiologist here at home on the 18th of this month. I have my one here at home and one at Cleveland. I definitely plan on talking to him about it and voicing my frustration. I honestlydon't even think the healthcare providers have a full understanding of "where this is going". I talked with my one nurse today about it (which still left me frustrated lol). The rehab place I go to has only had 3 other girls with this diagnoses, but we have all been entirely different. I think thats the biggest problem is what works for one doesn't necessarily mean it works for another. I honestly don't mind going most of the time even if there is no benefit because it atleast gets me out of the house and doing a little activity in a supervised environment. But days like today where I am told repeatedly my bp is normal (and looked at like I should be feeling good) irritate me. When I go they don't work me to the point of passing out either. After reading many peoples postson here (I am brand new to here) I think I am in an entirely different POTS category. I pass out no matter what, have bp drops no matter what, and ever changing heart rates no matter WHAT I am doing. It doesn't matter if I am up trying to move around or been laying in bed for 5days straight. Mine isn't necessarily all orthostatic intolerance like a lot of people I have seen. LOL I am a trooper. I try to do as much as I can activity wise (which really isn't alot right now) but I guess I am just willing to do anything and everything to try to figure things out and get my body back to somewhat normal feeling Oh and the day I passed out 3x I had actually stopped on the recumbent bike because I was 150/80 and literally felt high and like I smoked crack or something. I then laid down on the floor and began to steadily drop in bp. And I definitely did not continue to exercise after that, I went home and slept for 3 days because it killed me.

Brye: I so give you and all the other Moms out there who have to deal with this and try to do family life, housekeeping and all the other motherly duties an amazing standing ovation and round of applause because I could not imagine!! It's very hard for me to tell if any of this is helping me or making me improve in some way. My symptoms are all over the place, literally changing hour by hour at this point. Some days I can do the three machines and other days I only do one (which hey I say is better than nothing lol) and some days I don't make it there at all. I literally live my life hour by hour (*****!!) I am currently doing the Nu-Step, recumbent bike, and treadmill (on the days I feel somewhat human). It's funny but I am actually passing out more on the recumbent bike lol granted my treadmill speed even on an okay day is only 1.4 lol But still it makes no sense to me and no one seems to be able to explain why I do this. I am very fourtunate that ever since this began I know when I am going to pass out so luckily I make it to the ground or a safe place before I do it. So no falling off machines for me..WOOHOO!!

Heiferly: It's so funny that the recumbent bike is your friend because it's not mine!! lol. I am all over the place bp and hr wise that it really doesn't seem to matter what machine I am on. Like I said before thank goodness I have warning signs before passing out so that I don't have to worry about falling and all that. When I start my warning signs is when they are like "Krissy are you okay." But there are some days where they ask me that and later tell me my bp dropped suddenly or my hr skyrocketed and I feel fine and not fainty. I already think I am moving at snails pace but I am def going to try maybe doing a little warm up phase. I have not tried my stockings yet. My doctor kind of implied that they weren't necessary (my cleveland doctor prescribed them but the one down here didn't). I think I will go get them and try them out. POwerade zero? I will need to try that because I am G2'd out! So tired of it! Now to my bp being 90/60ish. That is what both cardiologists consider my normal because when I am in remission that is what I am always at. BUUUT when I am being POTsy it doesn't mean a thing. My target heart rate is 158 which I think is crazy because I feel like even more crap when it is in the 120-130's. Which brings me back to me being all over the place because some days I can be lying and doing nothing and go from 73 to 120something for no reason and my bp bottom out. When I get that high in bp and hr though I feel like i said before like I am high and on drugs. It's absolutely horrible. So I couldn't imagine getting around 160.

TO YOU ALL: THANKS FOR UNDERSTANDING

[Brye]

Wow! I can't imagine working out in support garments at all much less 40-50. I'm such a sweater I can't imagine. Wonder if I could get by with some lower compression ones though when I worked out. Probably better than none The recumbant bike is definitely my friend as well. No amount of "crash mat" (love that one) can make a fall off an eliptical runner graceful so I've given that one up.

I have my BP checked before and after usually. If my systolic is below 90 before I start I just head home to take a nap. I have a hard enough time staying on my feet. Fridays are always worse for me as well I think I just start off more tired on Fridays. I have good days and bad days as well. For me it's learning when to quit that's been a challenge. I don't get the warning signs before I faint so I'm very careful if I'm extra tired or not feeling well I just call it quits. I really want to stick with it especially as the meds are being adjusted so I can see which ones are working and which ones aren't. Right now I'm taking Midodrine to raise my BP and it's helped for sure with that. I just wish I could get rid of the feeling there's not enough blood flowing to my brain..

I'm also very dedicated about warm ups and cool downs. For me the cool downs are critical!! Hope you are able to stick with it and they can adjust your work out so it causes less of a problem for you. I love my rehab class ... they have the best potlucks and where else can you go get the latest retiree jokes going around.

Brye

[roxie]

Hi Krissy! I don't have any advice for you but wanted to say that I understand you frustration. I'm 25 and have had severe POTS since I was 12. I've never had a normal life and all I want to do is be a normal twenty something & the lack of independence POTS & OI causes makes it all the worse because you end up feeling useless ( at least I do)

Heiferly & Brye: what do you guys do for a warm up & cool down? I see you say thats important and I wonder what the difference is with warm up/cool down & normal exercise?