Ever Gonna Get Better???

[DIXZELAND]

G'morning my friends. I have a few questions that really need answered. I have been dealing with POTS since Nov. 2009 a little over a year. I have had to quit work and stay at home with the past month due to the worsening of the POTS. My doctor has taken me off my Beta Blocker because it was working against me and making my POTS worse. This past two weeks my doctor and I along with the Exercise specialist, Biofeed back person have come up with a plan. Everyday I suffer with constant high BP upon standing, rapid pulse rate at the slightest activity, and severe fatigue.

They tell me with the exercise program and tons of fluids, this will get better if not completely normal. My question is this, How much of this is true? I can't even go to the store without feeling like I am going to faint and my heart is going to jump out of my chest because of walking from the parking lot into the store. Taking a shower is much of a chore for me. It literaly takes me a good hour to get out of bed, sit up for 15 min., take a cool shower, get out and rest, get dressed, rest, brush my teeth and dry my hair. After that I lay down from exhaustion.

Please anyone who can help me understand this. I have to make a decision as to work, quit work, try for disability or give up completely.

Dixie

[sue1234]

Dixie, I sooo understand! I had to give up shopping, etc. because of the high orthostatic b/p and heart rate. I could not walk into somewhere and then get in a bind and not be able to walk out and back to the vehicle. So, my husband does all the shopping.

So far, I have the diagnosis of this problem, but no solution. I can't imagine excercise, with a b/p already at 175/110 just standing! It is very hard, not having ANY routes to get better yet. I am super sensitive to b/p meds, so haven't had any help in that area yet.

If you find something that finally helps you, please let us know. I am going on 5 years of a very boring life, not driving or shopping. I honestly thought 5 years ago, when this started, that I would go to a doctor, they would run some tests, tell me what was happening to my body, and then would fix it!!!!!! I cannot believe 5 years later I am in the same boat!!!!

As far as exercise, I know that people with pheos are told NOT to exercise until their pheos are removed, because they have such high b/p. I feel like I am in the same boat with the standing b/p stated above. So, what's a person to do??

[DIXZELAND]

I have been tested for the tumors which came back negative. Is there a reason why you don't have the pheos removed? Are you able to work? I recently just got a wheelchair to help me be more independent. Has your dr. done the large panel of blood work to see if there is anything abnormal that is causing the POTS? I am having that done tomorrow.

[radiohfan23]

Im in the same boat as far as exercise intolerance and I like your description of how you are affraid to go shopping - I feel the same way, just can't risk getting stuck. I was at the mall walking around for about 15 minutes the other day (with occasional sitting) and then stood in line for about 3 minutes and was starting to feel panicky/faint before i was able to get through checkout and make it back to my car.

As far as exercise I am going to ask my doctor about this, but I stumbled across this blog (http://www.potsrecovery.com/)in which they outline an exercise program and explain how strengthening the leg muscles and trying to exercise as tolerated in a lying or sitting position (such as a stationary bike) can help.

It talks about 30 minutes every other day which to me seems like utter torture. Personally I can do about 5-10 minutes on a stationary bike (the kind where you're sitting in a recliner position) at the lowest level. Of course it takes sometimes days to "recover" and am affraid or just to exhausted to try it again so I haven't been able to stick with it.

I've got an appointment with a new doctor next week (Dr. Tullo in NJ) and will see what he has to say.

[DIXZELAND]

please keep me posted about your new doctor visit:)

[DIXZELAND]

just to mention, she speaks of Dr. Levine in the Potsrecovery.com, and this is the Dr. in Dallas Texas that diagnosed me with POTS!

[sue1234]

I just want to clarify that I do not have a pheo--I just meant that I get similar b/p highs just by standing. So, if pheo people aren't supposed to exercise so that they don't stroke out, I was thinking maybe us high b/p people would be in the same boat.

[basktbal22]

Have you ever considered a recumbent bike? I have slightly elevated blood pressure, not in your range, but by working on a recumbent bike it has been regulated and better lately. Just a thought---and yes, I would avoid exercising in the upright position for now. But walking and recumbent bike sound like great exercises if you can tolerate them. I am religious on the recumbent bike, 6 days a week, and I feel it has been the #1 contributor to my recovery.

[DIXZELAND]

Have you ever considered a recumbent bike? I have slightly elevated blood pressure, not in your range, but by working on a recumbent bike it has been regulated and better lately. Just a thought---and yes, I would avoid exercising in the upright position for now. But walking and recumbent bike sound like great exercises if you can tolerate them. I am religious on the recumbent bike, 6 days a week, and I feel it has been the #1 contributor to my recovery.

I am looking on Craigs list for one right now. Do you have any recommendations? I have read where the batteries go dead within a few times of it being used and that an a/c adaptor is helpful.

[basktbal22]

No, sorry, I use the ones at the gym and they are hugely expensive.

[Brye]

Just typed a whole long response and lost it in cyberspace!! Hate that!

Recumbant biking is my favorite. I do a cardiac rehab type class at the hospital gym that has helped.

My HR control has been key. Have you only tried 1 beta blocker? What problems did you have with it?

Showers are my worst nightmare. I'm shower chair dependent for sure!!

Don't give up!! I've been battling this 3 years and have improved in some areas. Not where I want to be yet but I can't give up!! I mailed that form from the lawyer if you decide to go the disability route. You can look those over and maybe they'll give you an idea. Hope you get some answers and find some improvements sooon!

Brye

[DIXZELAND]

thank you Brye:)

[Lovebug]

Hi Dixze! Hang in there! To answer your questions: it is true! I have improved so much with the help of my wonderful doctor. I've been feeling bad for a few years but this past year was really bad for me. I had surgery for endometriosis, had vital signs changes (high HR & BP), and just felt like a dying person. After replacing my Vitamin D (I was low), getting chiropractic adjustments (this helps your nerves), fluid loading (3.5-4 Liters/day), starting a low dose of an old beta blocker (inderal 5mg am & 5mg pm), & then a low dose of Celexa (5mg per day)...I feel better. These all were steps and didn't happen at once b/c my doctor did my treatment slowly and in a step by step approach (not everything all at once). But each step I took was an improvement. At this point I feel like a human being again. I still have symptoms but I can tolerate them somewhat. I just want to keep working b/c I have the most wonderful job in the world (I teach nursing students). Your first thing is to become well educated about your condition and then find a caring health care provider. Take things very S-L-O-W-L-Y!!! For example, my doctor told me to start out with walking (slowly) for up to 5 minutes. If that is too much for me, he says to "back off". If I do OK, gradually increase it. Yes, exercise will help lower your BP if you run high so this is a good benefit long term. There may be days that you can do nothing so learn to accept your limitations. But please don't give up. I thought I was doomed and now I actually leave the house and enjoy myself!

[iheartcats]

I feel about 50% better on my medications and I need to get more exercise in somehow...I just want to get well, too, so I understand!

I take Inderal (Propranonal) too and it helps...funny how such an old drug helps so many POTS people. I know quite a few who take it! Which BB were you on?

[Lovebug]

I feel about 50% better on my medications and I need to get more exercise in somehow...I just want to get well, too, so I understand!

I take Inderal (Propranonal) too and it helps...funny how such an old drug helps so many POTS people. I know quite a few who take it! Which BB were you on?

Hi Cat Lady! I agree with your opinion regarding Inderal. Years ago a cardiologist tried to put me on Toprol XL (told me to break it in half) b/c I was having unexplained HR increases that were bothersome. I could not tolerate it at all (had SOB, felt terrible) so I was left untreated. But my current cardiologist told me that Inderal is an older drug and isn't as harsh as Toprol. He said it definitely makes a difference and I absolutely despise taking drugs that are brand new. I, personally, feel like they haven't be "tested" enough so I prefer older drugs. My doctor was right, the Inderal (at a very low dose) has made a huge difference for me.

[jem15]

"Ever Gonna Get Better?" ... that's the million dollar question, I wish someone could tell me the answer to;-) I've been getting worse for almost 16yrs now, and unable to work for the past 2yrs. I've tried the usual salt, exercise, betas(which also made me so much worse), and currently mestinon, but nothing has worked yet. It seems recovery just depends on the person, everyone is so different in their responses, and also on the doctor(s) treating you. So many are clueless, so a large part of the battle is finding the right doctors, and it's something I'm still struggling with.

As for disability/working, definitely a personal decision based on your body. You know what you can/can't tolerate based on your condition. I pushed for years, and finally 2 yrs ago, couldnt do it anymore. I had been switching/modifying my jobs for years, from more physical things like a teacher, to more desk jobs like a case manager, then to no traveling, etc... If you're already doing the least strenous work, and have to stop working, i wouldn't recommend just quitting, but finding out about your states temporary disability policy first. Cause who knows, you may get better by then. In my state, that can last up to 6mo. Also, if your company has a disability policy, you should find out about that.. my company had one, that you could apply for, when the temp.state one ran out. You can also find out about SocialSecurity Disability. They are the hardest to work with in my opinion, and take the longest, but if you cant work long term, you need to at least try for it. Unless you have another means of income or insurance. I'm single and doing this alone, so it's essential for me to access whatever i can. I'm currently on employer disability longterm, but they also make you try for for SSDI. I'm still appealing it, they said it can take another year or two just to get a hearing date. And if you do get it, it's 29mo before you qualify for Medicare! That's the main reason why I need SSDI, for the insurance access, cause currently I have to pay to continue my employers insurance, and i wont be able to do that for much longer.

As for recumbent bikes... I got a small one from Sears a few years ago that I'm happy with. It's called WESLO pursuit 360R. It was $100. And it just takes double AA batteries for the display screen, to show you the time, calories, etc. I dont have to change the batteries that often, but the bike works without it, so you can always time yourself by looking at a clock. I've been doing the bike and also strengthening exercises for over 1 1/2yrs now, and dont feel any better, but hoping it's helping on some level. It may have lowered my HR overall though. My resting HR is normal now, so that might be why. I'm still symptomatic though, despite a lower HR.

Hang in there, it's a long crazy road sometimes, but for others, sometimes I hear a story of "recovery" or at least functionality again. Most of the stories I've read seem to be from people dealing with it for a shorter time, like a few years or less. So you're catching things "early" , ha, believe it or not. So maybe that will work to your advantage. Best of luck!

[jem15]

Oh, and one more thing to check into, depending on the size of your employer (cause it doesnt apply to small employers), the FMLA(Family Medical Leave Act) may be something to look into, regarding finding out what protections apply to you... i think it might be up to 12 weeks off? where your job and maybe even insurance are protected. I cant remember the details, cause i worked for a small employer , so it didnt apply to me.. but something work looking into maybe. The Patient Advocate Foundation might be worth giving a call to, they will do an intake and give you free advice on disability/insurance issues, if you need it.