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Michelle Sawicki

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Posts posted by Michelle Sawicki

  1. Living with POTS

    in Dysautonomia Discussion

    Posted

    Those are definitely words of wisdom, Tearose. One of the hardest things for me to deal with when I got sick was knowing that my life was no longer "on course". It seemed that everything was out of my control all of a sudden. I never did get back on my original course...but my life has gone in a new direction and I now have new dreams.

    Meghan, keep in mind that research shows most POTS patients do improve with proper treatment. It probably won't happen over night, but the odds are in your favor that it will happen.

    Hang in there!

    Michelle

  3. Beta Blocker Dosage

    in Dysautonomia Discussion

    Posted

    I take 12.5 mg toprol each morning. Sometimes, when I'm not feeling so hot, I will take another 12.5mg in the evening. I have taken it on nights when I can't sleep, as it helps me get sleepy. Make sure you ask your doctor if it is ok for you to take it at night before you do so.

    I hope this helps and that you're feeling better soon.

    Michelle

  5. How are you all sleeping

    in Dysautonomia Discussion

    Posted

    I still have some sleep issues....as I'm typing this it is 4am. However, I sleep much better now then when I first became ill. Usually I can take a small dose of beta blocker on the nights I can't sleep and it puts me right out. Other nights I enjoy the quiet and get some work done. Tonight is one of those nights...

    Michelle

  9. Unintentional Weight loss

    in Dysautonomia Discussion

    Posted

    I noticably lost weight when I was first sick as well. My bones jutted out and my mom later told me she was really worried about me because my "face was all sunk in". I am still thin and have been all my life. I don't put on weight...no matter how much I eat. I've heard that people with EDS can have "marfan-like features". I'm not tall, but I do wonder if this might be the reason I am thin. Who knows?

    Michelle

  10. New to Board & Pots, Tremors anyone?

    in Dysautonomia Discussion

    Posted

    Welcome to the board, Silvia!

    I was very "trembly" when I first became ill. It is rare that I feel trembly now, almost 5 years later. The beta blocker did help me with the trembling.

    Hopefully the added salt will be of benefit, especially since you were on a low salt diet before. I also wear the support stockings, though I use the waist high ones.

    It really is impossible to predict how long it will take for you to feel better. If you get on a medication that really helps you may begin to feel better soon (sometimes you have to experiment with several different meds till you find one that helps).

    Now that you know what "got you" you will know how to fight it, and what will help and what to avoid. Hopefully these things will set you on the road to recovery. I was very sick with POTS at one point in my life. I now am back to work 3 days a week, I run DINET, I am on the board of another organization, I am on committees at work, I have a family, etc... I live a fairly normal life. Hang in there, things can get better.

    Michelle

  20. Genetic/Family Connection?

    in Dysautonomia Discussion

    Posted

    I think my father's mother's sister (is that my great aunt?) may have EDS & mild dysautonomia. She has the same long EDS fingers that I do and she looked very young all her life. She also complained that sometimes "her heart would run away on her".

    She had a sister that may have had dysautonomia as well. Her sister had the same "running away heart" when she was in her 30s. The doctors treated her with electric shock therapy. :) She had a stroke and died a week later. This happened about 50 years ago.

    I do have a sister who experiences pooling blood, especially when getting out of the shower. Like a classical EDS patient she can pull the skin on her face out very far (it looks really gross), as I can the skin on my back. But she is not hypermobile and doesn't seem to have "POTS".

    My other sister is very hypermobile but doesn't have any skin involvement and doesn't have POTS symptoms. So I think a genetic predisposition runs in my family, and that I was just hit worse than my other two sisters. They both have raynaud's and I don't.

    Michelle

  22. Hi Everyone..Havent been on in a while

    in Dysautonomia Discussion

    Posted

    I second what Nina said. I probably sound like a broken record with the "see your doctor thing", but I only say it because I learned the hard way. A few years back my periods were pretty screwed up...I would maybe have a period once every 6 weeks...and I just chalked it all up to POTS. This went on for about a year or so. When I finally did go for a pap smear -which I didn't do regularly- they found I had an ovarian tumor. It was the size of an orange and -luckily- turned out to be benign. Had it been cancer it may have already spread.

    Not trying to scare you (or anyone else)...but I think it is important to seek out a professional opinion when we have a new symptom or when something is exacerbated or just doesn't seem right. If nothing else, it will (hopefully) give us peace of mind.

    Take care,

    Michelle

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