My symptoms

[jsb]

Hi, I'm new here. Male, age 27.

Over the last six years or so, I've slowly developed the following symptoms:

Tachycardia after eating, esp. when I eat carbohydrates, sugar or diary products.

Crushing fatigue and tiredness.

Diahrea and constipation (alternating).

Weird reactions to a lot of drugs; e.g., Vicodin can send me into a panic attack.

Panic attacks.

Frequent Urination.

Inability to concentrate; the classic "brain fog."

Mild abdominal pain in specific places.

Nausea.

Exercise intolerance.

General ill feeling.

Flatulence.

Heat intolerance.

Shortness of breath (when my heart beats fast).

Most of these symptoms have come along in the last three years, since January, 2001; esp. the panic attacks.

I've been to a number of doctors, and no one knows what's wrong exactly. After much research, I decided it was some form of dysautonomia; but the slow progress of the symptoms seems to suggest otherwise--usually, POTS and like illnesses hit more quickly than this. I've begun to suspect that parasites are to blame--I've passed at least one worm, and I'm now seeing a GI doctor for that. I have an appointment this Thursday to discuss fecal test results. I theorize that the parasites have slowly worn down my defenses, and are now overwhelming me; my nervuous system seems to have hair trigger--it's always on edge, and can go into a rage with little provocation; parasites release a lot of toxins that could be to blame for this.

Anyone have experiences like this? Could parasites cause all these dysautonomic symptoms? And, once elimiated, would my body return to normal?

[MightyMouse]

For some people, autonomic problems present with a slow progression, so slow progression wouldn't mean that don't have POTS (doesn't necessarily mean that you do, either though...)

Good to hear that you're seeing a GI doc--especially if you've picked up a parasite. In addition, if you think you may have an autonomic problem, you should see a doc who specializes in that area--they can order the correct tests.

Here's a list of doctors:

http://www.dinet.org/physicians.htm

And here's a list of the typical tests they might order:

http://www.dinet.org/how_is_pots_detected.htm

In addition, if there are no docs in your area, you might able to find someone knowledgeable through the chronic fatigue docs listed here:

http://www.co-cure.org/Good-Doc.htm

Welcome to our board--Nina

[jsb]

For some people, autonomic problems present with a slow progression, so slow progression wouldn't mean that don't have POTS (doesn't necessarily mean that you do, either though...)

Good to hear that you're seeing a GI doc--especially if you've picked up a parasite. In addition, if you think you may have an autonomic problem, you should see a doc who specializes in that area--they can order the correct tests.

Here's a list of doctors:

http://www.dinet.org/physicians.htm

And here's a list of the typical tests they might order:

http://www.dinet.org/how_is_pots_detected.htm

In addition, if there are no docs in your area, you might able to find someone knowledgeable through the chronic fatigue docs listed here:

http://www.co-cure.org/Good-Doc.htm

Welcome to our board--Nina

I hold the hope that I don't have an underlying autonomic problem; because that would mean that my life as I know it is over, and I don't think I could deal with that. Before the panic, I took stimulants for attention deficit problems, and they helped tremendously; but I haven't been able to take them without panic reactions in the last three years. Even drugs like Wellbutrin and Straterra have side effects I can't tolerate. I've been unable to work effectively for three years, and I want my old life back. I seem to require adrenaline and a high excitation state to feel good; some people are like that. But I can no longer tolerate that state; it doesn't make me feel good anymore, but panicky.

Anyway, thanks for the links; I'll look them over.

[MightyMouse]

I hope you do find the links useful...

I also think you might find your best help from a knowledgeable doctor who can do a solid differential diagnosis--that is, can separate out the issues and figure out which one is yours and which ones are really not.

While I hope your issues do resolve, I can tell you that this disorder doesn't mean that life is horrible. I've had moments that were exceptionally challenging, but despite having POTS and NCS all my life, I would characterize my life as happy and fullfilling. I have had to change some of the ways I do things over the years, and sometimes I feel a bit left out of "normal" life, but heck, "normal" isn't all it's cracked up to be I'm only half kidding, but you get the idea.

Glad you found our site and hope you find a doctor who can figure out what's happening with your body. Hang in there! Nina

[jsb]

"I've had moments that were exceptionally challenging, but despite having POTS and NCS all my life, I would characterize my life as happy and fullfilling."

If I can't regain the concentration, focus and mental acuity I once had, my life will never be happy or fulfilling; so much depends on that. I'm a writer, with a huge project I stopped cold three years ago; I've returned to it recently, but I find I just can't work effectively. It's the ****** brain fog.

[Guest tearose]

Welcome jsb. You are among like minded people here! None of us wanted to have this autonomic problem and yes, it changes our life. (my POTS started after Lyme Disease, the Lyme is gone, the damage remains) It doesn't have to change it for "worse" however. Capture your thoughts and write about them! Even though you are a young 27, you are realizing how temporary and fragile your body can be...you can rise above this and with a good attitude you will find new ways to succeed. Your path may not be as you pictured it three years ago but that is okay, make a new picture!

Hang in there and keep writing, it's all about the journey...tearose

[goldicedance]

Glad that you joined our group of POTers. Many of us have found that symptoms do progress and that they wax and wane.

Go for a good diagnosis. Explore all avenues. Don't be satisfied with less than the best.

You are not doomed to a life of nothingness. We all do the best we can to do whatever we can. Many of us still work but have good days and bad days. Life is not measured by paid work. Life is measured by the good that you can do for others and the enjoyment that you get from doing whatever you can be doing.

Keep in touch with us so that we know how you are doing.

[Deb]

Welcome to the forum JSB. As Nina wrote, not everyone suddenly has POTS. Mine was very slow coming, about two years before I had full blown POTS. I've had, and still have, most of your symptoms except for the tachycardia after eating and the constipation. I have intermittent diahrrea. I lead a pretty normal, average life with all of that. I work full-time and have several flower gardens and two vegetable gardens. I love to be outside. I love to cook and entertain. And, I still do all of that. But, I had to learn to take things easier and to change course from time to time. My house is no longer as clean as I once kept it. I have to lean on people a bit more, and ask for help when I once never did. Sometimes I wake up ready to do something I've planned and had to postpone or cancel it because I just am too tired. These are little things that all of us with Disautonomia learn to deal with. It all has gotten easier since I started reading the posts on this forum. I don't think I would have done nearly as well if I had to handle this illness alone. This is a great place to vent and share and learn.

Please try to find a doctor that specializes in autonomic nervous system disorders. It will make a huge difference in your care. But, be prepared to try different medications. As you have already experienced, most of us are very sensitive to medications and what a "normal" person can take usually is too much for us or totally wrong. Once I got on a regimen of medications that I could handle, my life became incredibly better. The bad days are never as bad as they once were. There seems to be more good days now than bad. Some days I think that maybe I don't have POTS anymore. I'm quite an optimist.

Good luck with the GI appointment. I hope that something good comes from it. And remember, we're here if you need us.