Progression Of Pots, Etc

[hholmes13]

Hi Everyone,

So I'm a newbie with this stuff. I don't even have a totally definitive diagnosis. (Docs are calling it orthostatic intolerance but also flip-flopping back and forth on saying I have POTS. With the increasing amount of tachycardia problems I've been having...definitely leaning towards the POTS diagnosis.) I've only been dealing with this chronically for about 5 months now. I have always been prone to fainting and had more near-syncope episodes than I can count. It was just never an every day problem until this year. Anyway, I've read about so many of you that are severely affected by this and are no longer able to work/drive. My question is, how long did it take to get to that point? Did it come on really quickly or was it more of a slow progression? Did you have periods of improvement? I realize everyone's experience is different. My neuro doc had said he was optimistic (about 3 months ago) that I would return to normal no problem. He said it may take a few months, but he thought I'd be fine again. Well...not so much yet. I have my good days here and there, but at least 1-2 times a week I end up leaving work really early. Most other days are a struggle to get through but definitely better than the horrible days. I guess I'm just trying to get a grasp one what my future may be. Like I said, I realize everyone is different, I'm just curious what other people's experiences have been. Also...I really respect all of you for having such a positive outlook most of the time. Most of you have dealt with this for so much longer than me. I haven't been dealing with this for all of that long yet and I find myself getting really discouraged at times. Thanks in advance for any input.

Heather

[sisblostg]

Hi!

It sure is different for everyone. I can trace my symptoms back to when I was a teen but back then the symptoms were annoying but not disabling. My first pregnancy got me the dx of OI. I did get better, I think they like to say functionally recovered? for a few years which means I was driving around town but not cross country, or I was going to the grocery store but not walking around a mall for 3 hours, but it was enough that I did not feel like I was missing out on too much. Each time I had a relapse(from pregnancy, virus, stress etc) recovery has been harder. It went from a few months the first time to a year or more to get back to fuctionally recovered. I am not sure it is age, if as I got older it is harder to bounce back? but my last relapse(in my late 30's) left me at my lowest point even getting up and going to the bathroom or getting a drink was hard. When got to that point I went to the Mayo and got an offical h-pots dx w/suspect eds and a "plan" and went from bedridden to being able to cook, do some chores, get out to school functions and drive short distance sometimes. Right now I hope for a more full recovery again but I am happy with what I can do and each new thing I am able to do. I think what has helped me mentally deal is that my family has an ALS (lou gerhigs disease) history and after seeing family members die of ALS, I appreciate the functioning I have and that I get to see my kids grow up.

I have found that sleep is very important and well as not losing muscle when you are not active. My legs have atrophy over my years of on and off activity which I think has made recovery harder each time.

[sue1234]

20 years before POTS, I did anything I wanted to do. I started having anxiety and panic attacks that were controlled with a tricyclic antidepressant. After 10 years, it didn't help anymore, and I began to notice that eating made the anxiety go away. I just made sure I didn't skip a meal.

At the same time, I was having low blood pressure of 90/60, which was totally normal for me, and I was fully functional with no lightheadedness. I noticed my heart rate resting was always around 100, but I didn't really "feel" it. I began to have eye problems where I couldn't keep my eyes focused on the road, so I gave up driving. I felt like I was drunk the way my eyes would not steady.

Another five years later, I noticed I felt odd if standing in line at the store, so I began to fidget all the time. I would walk in odd circles, trying not to be obvious, while waiting to check out. That worked for a couple of years. Then one morning I had labs drawn, stood up, and felt lightheaded and racy. I went home and rested. It never went away. I could cook some, clean some, but then hit my limit and had to sit.

After a few years, I am now extremely heat intolerant and feel like fainting with any temps over 78ish. I flush off/on everyday. If I try to cook, I flush and get short of breath. I actually don't seem to get lightheaded as much anymore, it is just the flushing that makes me need to sit to get it to stop.

So, that is my progression.

[starby]

Hello,

my pots started as a secondary to ME/CFS so it's hard to separate them, but basically I developed pots in April 2010 after trying to do some yoga (big mistake). Ended up im ambulance with heart rate 190 bpm. Since then I've had bad days and horrible days. The pots definitely varies a lot as I don't need my beta blockers some days, but when I've exerted myself physcially I get very ill and need them more. My pots is very much linked to my other problems - immune and nervous system malfunction - so when my system is weak my pots will flare up and I get tachycardia every morning or on any sort of movement. I am unable to manage stairs to the point of looking for a flat to rent (am in house currently).

[potsgirl]

My OI/POTS fluctuated in the beginning. I moved to Tucson in 2005 for work in the archaeology field (not much of that in Iowa), and within three months was feeling pretty sick. I had to quit my job after about 10 months because of my symptoms. I slowly felt better, and took a physically demanding job with an Indian tribe along the Grand Canyon, where we helicoptered into the Canyon to record the conditions of the southern banks of the Colorado River, which the tribe owned. Did a lot of walking in 100+ temps. After about a year there, I got too sick again to work, and moved back to Tucson for a desk job with the county, which was a dream job for me. Made it about a year and had to leave that job. I haven't been able to work since, about the last 4 years.

Thankfully I applied for federal disability early, and after going to court, received it. I also was able to get disability from my job. I also am on Medicare, and I know I am blessed to have all of these things. Having a dysfunctional autonomic nervous system has led to other problems for me, like issues with my heart, and small fiber neuropathy, to name a few.

I really hope that your doctor is right, and that it passes quickly for you. I can recommend that keeping up with some sort of exercise program may be very helpful in keeping your symptoms on the lighter side. Don't give up, and if you can, go see a Mayo Clinic/Cleveland Clinic/others are listed on the front page of the Forum

Cheers,

Jana

[Allene]

For me it's been about 3 years since the onset of my symptoms. I'm not as disabled as some, but I have difficulties getting around and am looking into wheelchairs for trips out of the house. I can drive most of the time, and I am generally functional (if only barely), but quit my job in February because of my illness.

I worry about continuing to get worse.

[hholmes13]

Thanks for your replies and sharing your stories! I'm sorry you have to deal with so much...and for such a long time! I try to be as active as I can. However, I have developed pretty bad exercise intolerance, so my I'm definitely not exercising like I used to. (I was training for a half marathon when this all started.) I try to do it whenever I feel up to it.

potsgirl, thanks for the advice. My primary care is at Mayo in Rochester since I'm an employee there. My neurologist is one of the specialists in POTS and such. I do feel very fortunate that I don't have to travel to see a specialist. If anyone is coming to Rochester, you should let me know. It would be fun to meet some of you face to face.