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Hello everyone!

I am Nela. I had typed up this looong post about how I came to have such and such a diagnosis (and how I finally got it!) but I figured that might be a little much for and introduction :lol: What I can say is that I am originally from Montreal but I now live in the Netherlands. I am 24 years old and have way too many prescriptions and conditions :P To be honest, I'm not quite sure what I am doing here nor what I am looking for. One of my many doctors told me that there is a glitch in my nervous system causing this and that. I haven't really understood everything he said so I am hoping that I might understand a little better through this site.

Things I got diagnosed with:

- Asthma and bad allergies (heavily medicated: cortisone, avamys, singulair, combivent, spiriva, atrovent, Benadryl)

- Sleep Apnea (CPAP prescribed, mouthpiece prescribed, weight loss prescribed)

- Irritable Bowel Syndrome (only avoid certain foods)

- Severe Migraines (medicated: lyrica, Relpax)

- Possible Endometriosis (birth control)

- Inappropriate Sinus Tachycardia (medicated: bisoprolol)

Things noted and not understood/not medicated:

- pallor

- purple/blue lips

- Feeling Faint

- Joint/muscle pain

- Hypoglycemia (doctor has no idea what to do about it)

- rarer Hyperglycemia (same)

- sudden drops in blood pressure

- Occasional high blood pressure

- Dizziness

- Extreme fatigue

- general feeling of being unwell

- Weird vision

- Vertigo

- Feeling like in a dream (cannot remember the term: like you're here but not here... Detached from surroundings?)

- Muscle Weakness

- Numbness

- Slight Hypothermia (quite fascinating really :P Body temperature reading at 35.1, 34.9 C = mom buying 3 new thermometers all reading the same - doctor later confirmed a 35.4 reading)

Anyway, that's what I know. I'm hoping maybe I can find something here that might help me. Maybe even someone who can relate!

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Welcome, Nela!

You've come to a great place full of support and information. Make sure you read the home page, where you can find a lot of good information on the various dysautonomia conditions. Have you had a tilt table test yet? POTS is based primarily on how your BP and HR functions when you're in different positions or just standing, etc. Do a search for a 'poor man's tilt test' if you'd like to try it at home. A good BP monitor with a HR function is good to have to test these things.

When you were describing your 'dream' feelings, do you mean something like a 'fugue' state? This means that you're moving around and doing things, but not really aware of it.

Welcome again, and we hope to see you post more in the future and become a part of our community.



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You just wrote down my symptoms. You're in the right place. You will find answers here. A lot of what you describe can be explained by Hyperadrenal POTS and Mast Cell Activation Disorder. You can have both. Also the joint and muscle pain could be a clue if you have hypermobile Ehlers Danlos which can also be a cause of POTS. The only thing you described that I don't have is purple lips. That is a sign of lack of oxygen and if you use your CPAP and make sure you are getting enough oxygen in the night that may get better. Sometimes at altitude, I do have to use oxygen with my CPAP because I still don't get enough oxygen to my brain and tissues.

One suggestion for endometrosis --- Natural Transdermal Bioidentical Progesterone. Wish I had known about this before all my 8 ab. surgeries and complete hysterectomy. It has helped allot of people. I tried the birth control pills, it just made me miserable, it helps with the pain of the periods but throws your hormones off even worse. The thought is there is too much estrogen and if overweight, fat holds on to estrogen. To balance the too high estrogen, you need progesterone. It may even help you to lose some weight. It also helps with depression for some.

Welcome!!! I'm sure we'll be talking more.

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Thanks guys. :) I still have so much to learn. To be honest, I do not know that I have POTS? I know I have IST but not POTS. I've never been tested though I guess IST would be more what I have anyway?

Haha, the weirdest thing about the lips is that it really isn't an oxygenation issue. :huh: That's the first thing we checked. I thought it was because of my asthma. Nope, oxygen perfectly normal. The doctors have noticed it and are really quite unsure what to make of it. No one seems to be bothered too much by it really. It comes and goes as it pleases. Lol :(

Don't we love our bodies? :(

Thanks for the welcome and suggestions!

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