Jump to content

Hello, I'm New Here!


Recommended Posts

I have finally joined and would like to introduce myself:

I am an extremely nerdy mother of two boys, 9 and 6. I think that I have always had POTS since I could never run and always gotten dizzy if I stood up too quickly. I was MIS-diagnosed with exercise induced asthma 12 years ago when I went in to the Dr. after nearly passing out while attempting to jog with my husband. I had always been told that I was lazy and out of shape, and the Dr. said "I don't even have to test you...you have asthma!" Wrong! I had an stress ECG done several months ago and it was determined that my heart rate went up to 180 bpm with a brisk walk, it's a little hard to breathe when your heart is beating that fast.

I have never slept well, so I went to a sleep Dr. who is absolutely positive that I have DSPS (Delayed Sleep Phase Syndrome) a genetic screw-up of my circadian clock. I don't want to go to sleep and cannot actually go to sleep until my body says it is "night" usually after 2am, and getting up at a "decent" hour is torture. We tried a lot of different things in an effort to reset my body clock and all of this culminated in quite the "Crash." I began hallucinating (actually in the dr.'s office), developed a tremor, was unable to carry on a conversation, left the groceries in the car because I forgot that I had gone there, and of course the migraines! My primary Dr. did minimal testing and sent me to a psychiatrist. Fortunately, a good one...he looked over all my symptoms and actually called a neurologist to make me an appointment.

Then the ball started rolling, they found autonomic neuropathy, orthostatic intolerance, and central diabetes insipidus (the jury is still out on that one.) My NEW primary Dr. got me in at Vanderbilt (in November) and is insisting that I get completely tested for this DI thing.

My current hobbies are neuroendocrinology and orthostatic intolerance research, and occasional gardening when I feel up to it. I am a successful, free-lance artist (at least when I am medicated and don't have the tremor.) I also have a wonderfully supportive husband and family. I can give you all the stats and info on the 4 types of diabetes insipidus, but cannot tell you if I have it, or why it is not really there in POTS.

So, hi Y'all, it is very nice to meet you! If you need me, I'm swinging and doing acrobatics at the end of my rope!

Jennifer

Link to comment
Share on other sites

Jennifer,

Hello! Welcome! We are glad you are here and hope this forum is helpful for you.

Take care, B)

Lisa

Link to comment
Share on other sites

Hi! Welcome!

I too pretty much have the same type of sleep problem, still undiagnosed, and ever changing due to meds. I too have a tremor, but it is an Essential Tremor, so it is probably different than for you.

I hope that you get more answers soon!

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...