MomtoGiuliana

Nina

Glad it normalized. I think pain especially does a number on those of us with autonomic dysfunction. It seems to raise my blood pressure to higher levels than seem reasonable for a normal person. Also, being sick brings my blood pressure up. Normally, my blood pressure is like yours, 120/80 (or a bit lower).

Katherine

Michelle

I have a lot of experience with grant writing. If I can help solicit grant funds, let me know.

Katherine

Interesting note about altitude sickness--or at least, being strongly affected by altitude. I was in Cuzco, Peru (and even higher elevations) in 2000, 2 years prior to developing full-blown POTS. I was really sick for the first two days, practically from the moment I got off the plane, and could barely get out of bed. Every time I sat up the room spun and I felt like I couldn't breathe. No one else I was with was having any serious problem. I realized at that time that my body for some reason isn't as adaptable as others, but had no idea what was going on! After a couple of days, I got much better and was able to hike along with everyone else. But, I don't think I'm ever going to try going so rapidly to a high altitude again.

Thanks Nina! I signed up!

Katherine

I used to have this problem when my POTS was full blown. I don't really experience it anymore.

Michelle

I just tried to make a donation via the link on the website and I got an error message after it took me to the linked site and I clicked on make a donation.

Also, how does one make donations through shopping on-line. I don't do this much, but would be glad to make donations this way when I do.

Thanks,

Katherine

I second Timbo's post. I didn't know it is legal to fire someone for having a chronic illness--is it? I guess I was lucky. I work for local govt. When I got sick, while pregnant, with POTS, I was gone for ten months. I had disability insurance through my job that kicked in and eventually gave me some coverage. The County continued to cover 90% of my family's health insurance premium during those ten months as well. My boss created a part-time job for me (we had started this process when I became pregnant b/c my plan was to come back part-time after the baby was born). He held the position open until I returned. I do realize how fortunate I am. Luckily, too, my position is fairly sedentary, although it involves a lot of meetings and some regional travel, but, I am not on my feet most of the time. I think the reality for many POTS patients is that you have to make lifestyle changes, and this includes the sort of job you do. Many POTS patients who have physically demanding, long-hour positions probably have to re-train for something else, or otherwise move into another line of work--if work is possible at all. Pushing yourself to the limits of your endurance, while often we have no choice, is probably not healthy in the long-run.

My deepest empathy is with all of you who face the economic and psychological trauma of making this transition, especially if it is from something you really love to do.

Katherine

"She has the same long EDS fingers that I do and she looked very young all her life. "

Michelle--what is EDS--I am also curious about this statement b/c I have very long fingers and people tell me all the time I look 20 although I am in my 30's (not a "symptom" I complain about!)

"My other sister is very hypermobile but doesn't have any skin involvement and doesn't have POTS symptoms."

I'm not familiar with these symptoms relating to POTS--can you elaborate further? Thanks!

Hi everyone

I'm just curious whether any of you know of other family members with autonomic dysfunction/POTS/NMH? I think I read somewhere that it is believed that POTS has a strong genetic basis, particularly from mother to daughter. I know of no one in my family (and I have 3 sisters, none of whom have had this problem) who has ever had symptoms like these (although I realize POTS, etc is under-diagnosed to unrecognized by most doctors).

Thanks,

Katherine

Yes, this is one of several nagging symptoms I have--exaggerated heart rate increase when simply moving around in bed. It is sometimes accompanied by a slight feeling of dizziness.

I have autoimmune thyroiditis as well as POTS.

If you have just started medications it may be a temporary side effect of the meds, and/or it also may take awhile for the medications to help you.

SOME people with NMH/POTS find improved thought clarity with increased salt intake.

Getting adequate rest is also important. I think insomnia is a problem for many POTS sufferers, and lack of sleep can contribute to mental fogginess!

Exercise, if you are up to it, will boost your brain power. Yoga is great for that, especially, I find.

I don't know if this helps. I do hope you find the medications alleviate your symptoms. It does take awhile for some of these medications to help.

Katherine

I also have tremors that come and go--and I was also freaked about SDS before I got diagnosed with POTS. The neurologist I saw told me again and again that she did not think I had any kind of degenerative disease like SDS. I know how you feel! I have a particularly bad tremor in my neck, of all places. It started three days after my daughter was born. It comes and goes. I try not to let it worry me.

Some POTS medications--like Prozac--can make mild tremors worse. So keep that in mind too--it could be a medication side-effect.

I think we POTS patients are of course prone to hypochondria. We feel awful a lot and have bizarre symptoms that could fit with a variety of diagnoses. It's probably best to keep the internet research to a minimum for that reason!

Katherine

Yes, I experience the same thing. I remember telling a doctor or two about this phenomenon and they just gave me a blank look, like it was irrelevant. I can often feel quite good/normal by 6 PM or so. Mornings are the worst, I just have to force my body to move some days. I work part-time and am a full-time mom. On my days off from work, I always do some gentle, on-the-floor yoga in the AM with my daughter by my side. This seems to help somewhat. I would really like to understand how I can feel so rotten in the AM and often so well in the PM!

I've had strange sensations/feelings of pressure/weakness--hard to describe--in my chest area that only occur when I am standing/walking. It must have something to do with blood pooling inappropriately. It tends to be worse in the morning and by evening I generally don't notice it at all. It comes and goes but was definitely worse when my POTS was full-blown.

When I was first diagnosed with POTS, my resting heart rate, sitting or lying down, was 80-100 bpm all the time. Standing it went as high as 160. After treatment with beta blockers, salt and fluid intake increase and prozac, my resting heart rate seems to stay around 65-75. However, I do notice periods at night especially when my heart rate is around 80-100 and I am lying down. So, I think a resting heart rate that is fast is typical with POTS.

I developed POTS during pregnancy and had to stop working completely (from a 40-hour week) at 7 months. I didn't improve, in fact, got worse, post-partum until I was unable to walk at all and at times felt completely unable to move. (Thankfully my mom stayed with us during this time). After going on beta-blocker and prozac (minimum dosages) I very slowly improved until I was able to go back to work in August. I am back part-time. In general I continue to improve very slowly, but still have relapses of symptoms. And I do wonder if I will ever be able to go off the meds. I still have to take it easy. I do yoga and I walk nearly every day, but I don't seem to have the tolerance for anything more aerobic. I have to rest and avoid stress when at all possible.