Need Some Help....so Tired Of This

[villen]

Hi!

Just a little nagging....after doing pretty well last week, I now feel worse than ever.....argh!!!I am so tired of my constant pounding heart. Anyobdy else who suffers from this?

Can any of you explain why the POTS symptoms (extreme reacing and pounding only when switching position in bed) are much more severe after little sleep and taking sleeping medications (like zopiclone)? is it due to more adreanline? Sorry for all the questions....I don`t know how to cope with this anymore....I feel so horrible at the moment...I feel like my body is in total mess, and I have lost all my muscles it feels like....

I never faint though, although I feel like I will. I guess the high adrenaline is preventing that. The worst is the feeling of dying every time I turn around, stretch, stand up....

Also, when people say you should start exercising slowly...what is meant by that? Like walking 2 x per week, strength work-out etc? I guess some may say "listen to your body" but my body is symptomathic almost 24/7...

Its hard to deal with my anxiety issues when the POTSy symptoms are at their worst...And I really feel like I have to bulid up my stamina and cardiovascular shape...anyone has suceeded in this?

Wish you all a good weekend

Villen

[summer]

Sorry you are feeling so terrible right now. After a year and a half of being sick most of the time, I am finally beginning to have more "good" days than bad. Although, even my good days are not like my pre-pots days.

I have had a lot of difficulty with excercise because I feel so much worse immediately following (and for hours after). The doctor who diagnosed me told me that excercise was the most important thing I could do to help myself. He said that I should begin with whatever small amount I could do, short of making myself sick (for example 5-10 minutes on a tread mill at 1 mile per hour, zero incline) and that I should do the SAME amount everyday. He said it was important that on my bad days I do no less, and on my good days I do no more. Very gradually, I am to increase the amount until I am exercising 30 minutes per day, but he said this could take months (or even a year).

He said one of the biggest problems his patients have is not overdoing it when they feel better. I can relate as I'm sure many here can. On the good days, it just feels so good to be closer to normal that I just want to do normal things and not hold back! But when I do, I always pay for it. So I'm going to try it his way for a while and see if it helps.

Hope you feel better soon!

Summer

[Carly87]

Hey Villen,

I'm sorry you are having such a rough time right now. Your post reminded me a lot of myself...I know how it is to have a "good week" followed up by a horrible week and how depressing that can be!! I've dealt with all the same symptoms you do, for 2 years now, and yes it gets tiresome after a while. You mentioned something about rapid heart rate when you roll over. Well, I used to be worried about that exact symptom because it happened to me no matter how much sleep I got. I did some research on it and found out that happens to EVERYBODY not just POTS people. We just notice it because we are so sensitive to our bodies, especially our hearts.

My advice to you is to try to identify what triggered your bad week. When this happens to me I can usually identify a cause...It might be increased stress (usually the cause for me,) or I could have gotten off track with my eating habits, not drinking enough water, or over-doing it. I know summer just touched on this issue in her post about overdoing things when we feel normal...I tend to do this a lot. When I feel semi-normal, I just wanna go out and have fun and active and do all the things that people my age do. But 90% of the time I end up paying for it for a few days (atleast.)

As for exercise, I highly recommend it. Make yourself a promise to do something every day! Easier said than done, I know. Walking is good and I find that even when I'm feeling bad I can still walk a bit because the blood pumps through the body easier. If you don't feel like you can go out for a walk try to do a few lunges or squats here and there for legs. The stronger your legs are, the better.

One more thing, I can totally relate to you on the anxiety thing. This condition has caused me SO much anxiety...I used to have multiple panic attacks every day, agoraphobic, etc. let's just say I've been through **** and back with the anxiety. I'm much better now, but I still deal with some today. I can honestly say once the anxiety is treated it will make POTS much more livable because stress makes it so much worse. Have you ever talked to a dr. about the anxiety aspect? I don't take any meds on a daily basis for anxiety but my doctor prescribed xanax for me to take when I need to. I take one pill (.25mg) a few times a month at most, only when the anxiety is getting too hard to bear. It really helps me from going into that downward spiral that will set off my symptoms for awhile to come.

Sorry for being longwinded, your post just reminded me of something I would write!! Hope this helps you.