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Hello From An Old Friend


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Hello dear ones,

It has been a very long time since I have posted. I see many newbies, and not many of the old names back from when I was on in 2004-2006. To the newbies - I am glad you are here on Dinet. I took me a long time to find it, but oh so glad I did. To the veterans - I am also glad you are still here; quieting the fears, giving hope, and providing advice to the new ones.

I have a glimmer of hope to give you - for now. The reason I haven't been on, is that for now anyway, my body has been doing very well. I finally graduated from college (I am a non-traditional student in my 30's) with my bachelors. It took me a long time, I had to miss semesters here and there due to POTS, and repeat a few as well. But finally, after 13 years at it, I finished.

I also got married to my longtime sweetie, on June 10th in southern California. Yes, it was short ceremony, but I am happy to say, I STOOD FOR THE WHOLE THING :)

I also started a brand new job in May, and yes, full-time. It is basically a desk job, so no standing for long periods required.

I also started to work out with a wonderful personal trainer back in January, who is very good about working within my parameters.

To the newbies, I was one of the most severe cases of POTS and Dysautonomia the St. Paul Heart Clinic and Mayo Rochester had ever seen. I couldn't even roll over in bed without my heart going to 145 and higher. I was also used at Mayo as a testing subject for POTS research - yes, I was the guinea pig. I did it to try and help the next person who got struck down with this. Needless to say, I was bedridden for months - literally. There was a time none of us were sure I was going to make it. By the time my body re-wired itself around the damaged circuits, I was 100 pounds of nothing (I am a bigger girl - I had weighed 147). I tried all of the drugs, to no avail.

To be truthful, I stumped Mayo and St. Paul Heart. Nothing they did could help me. They knew what I had, but I was "unresponsive" to treatment. I basically went home - waiting.

Now here I am, married, new job, graduated, new life. My body got sick, by itself, and got better, by itself. I do take 5 milligrams of Lexapro a day. That's it. Nothing else.

What helped me? Coming to terms with myself, and my body. My body will never be what

it was before - and I'm okay with that. It will never be what a "normal" persons body is. However, it is still a good body, and I am happy to have it. I have had to make modifications to live in it, but again, I am still here - so I am happy with it.

I still have to watch the heat, I still have to do my physical counter-manuveors, I still have to make sure I am hydrated, and I still have mini-spells on occasion. But I handled them before, I will handle them again. I have flown, since last year, to San Francisco twice, Chicago twice, New Orleans once, San Diego and New York City. Yes, I have "Pots-ed" on the plane. I even **** near collapsed in the middle of Times Square. It's okay - I obviously made it through - :) But I figure - what the heck? I am not going to stop living, I only get one shot at this life, and I am taking everything I can, while I can.

I even drink red wine now, yes I do! At the height of my illness, I thought I would NEVER be able to touch a drop of alcohol again. One sip, and I would be on the death bed. Not anymore. No explanation as to why - but it just is. I can also handle heat and humidity, as long as it is not for too long. No explanation as to why - it just is. I can walk for miles. I can even do a pretty tough work-out routine at the gym. I can now eat whatever I want - not just Ensure and Pedialyte. I basically, with modifications, live a pretty normal life now. That could stop at any second, as it did twice before, but I am living it up, every second I can.

The point of my long-winded message to you? DON'T GIVE UP! No matter what any doctor, psychologist, relative, or friend says to you - keep going forward. Never give up hope in yourself, or your body. Recognize the small victories in everyday living. For awhile, for me, it was getting to the bathroom alone without passing out. But I celebrated it. Give yourself the victories you deserve, no matter how small. Love yourself - no matter what condition you are in. Your body WILL notice the difference, and will love you back. Forget about fear. I know - easier said than done. But fear takes up to much of our already precious energy. You are all obviously very brave, because look at what all of you have endured already. Give yourselves that wonderful respect.

My best wishes, hopes and dreams to all of you. If I can help you in any way, drop a line. Take care of yourselves. Keep going - no matter what.

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Can I ask how your POTS started? Was it a virus or genetic?

Very inspiring story. Sadly I'm pretty much where you were at your worst. Mine is genetic, had it mild my whole life until 2yrs ago when it became severe after a period of extreme stress.

While secretly hoping it'll improve a lot as mine is genetic I don't think it will. It has ruined my life in every way possible. No Dr's have a clue what to do or are interested.

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I have a lot of old threads on here - just do a search on my name. The short answers are these:

1) I had fainting problems as a child - thus it is Mayo's opinion that I was born this way. It was not post viral - although my second flare-up was after a bad flu illness that lasted two months. The hypothesis is that certain viruses will continue to hit me where I am weakest, the autonomic nervous system.

2) The first major flare-up hit me when I was 20 years old. I had just come back from doing foreign study in London. When it started, I thought I had just a bad form of stomach flu. I vomited for 14 days straight (leaving me with a hiatal hernia), was dizzy, couldn't move, and my heart was racing all over the place. Docs were never able to figure out what I had - every test they gave me came back normal (Thyroid - which they were shocked it was normal, EKG - normal, but severe sinus tachy, bloodwork - normal, etc.) I went home, undiagnosed. It took me about two years to really come back after that one. No help from docs - not that they didn't want to - they just had no idea what to do.

3) Second flare hit me at 28. I wasn't messing around this time, after losing 37 pounds in one month (gastroparesis and IBS hit with a vengeance) I literally crashed into the Mayo Rochester ER. Sitting down, holding perfectly still, my heart was racing at 167. No irregular heartbeat, just very fast sinus tachy). From there - Dr. Low

4) Things I do battle with: IBS, GERD, Slow bowel motility, exaggerated splanchnic bed pooling (after I eat a cracker - my gut swells up to make me look 8 months pregnant - no kidding, even the docs were amazed), anxiety, heat intolerance, I get orthostatic at times, hypovolemia, etc.

5) I was told I had the extreme hyperadrenergic POTS - Norepinepherine levels were pushed over the 800's (the scale at Mayo only goes to 750).

Again, it has taken me a couple of years to crawl back out. Again, no explanation as to why it happened, or really why I got better. The docs have just said "Go with it".

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Hello Avais1,

It is good to "see" you again and it is wonderful to hear your good news! Thanks for sharing. I wasn't able to be very active on the forum in 2005, but I do remember you. I'm glad to hear that things have improved to a more functional level. :-) Enjoy it!


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Excellent! So pleased for you. A lot of what you've said is so similar to me, you've given me hope when I had given up. Thank you.

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hi avais!

so nice to heaar from you! i am very happy for everything you?ve achieved. sharing your story means so much to us. so thanks a lot and do enjoy every moment of your new life, as you know how different your life has been while you were sick.

congratulations avais,

wishing you all the best for a wonderful future!!!

corina :)

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It's great to know that you are doing so well these days.

I am also continuing to improve. I have days I feel poorly, but overall, to my surprise I find I feel better this year than I did last. I can also do some things I had trouble doing even last year?my stamina is improved. This week I went swimming in the ocean three days in a row for an hour at a time. Instead of feeling drained, I felt refreshed?a feeling I remember from a long time ago! My onset was not viral either, and I also believe I have had this condition for most of my life, since adolescence.

I think it is important for newcomers to this condition to know that a great deal of recovery is often possible.

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It's nice to see your name pop up and that it's with some good news. Like you, i have been working with a personal trainer who tailors all my workouts to keep my limitations in mind.

Keep on keeping on !!! :P Nina

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Thanks for taking the time to drop in and share your update. It's always encouraging to hear about someone's improvement. I worked with a personal trainer for 1 1/2 years. I've gotten off track for a few months and need to get back into it. Hope things keep up for you!

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