Introduction

[lfreem02]

Hello. I am new to the site, and thought I should introduce myself. So, here we go.

After an eventful year, I turned forty December 26, 2011. I thought it would be a fresh start entering a new year on the calendar, and a new decade of my life. I bought my first new car on my birthday, so things were looking good. I was driving into work and became lightheaded and my vision became blurred. I had to pull over a few times before finally making it to work. As someone jokingly said, my warranty just ran out (me, not my car).

I have seen an ENT, GPs, Neurologists, Cardiologists, Ophthalmologist, and a Rheumatologist. I have had an MRI, CT scans, tilt table test (after nitroglycerin hr = 50, bp = 80/60), stress tests (heart rate would go from 80’s to 110’s while sitting), echo cardiogram (resting hr 120), EKG, and blood work. My symptoms have included lightheadedness every day to some degree, feeling like I am going to pass out, blurred vision due to my left pupil dilating randomly, extremely dry eyes, burning in my left eyelid, burning and numbness in my left cheek, pain in my left jaw, feeling of cold water running under my skin in my left arm, Raynaud’s, burning/pain/tingling in legs, mild headaches, fatigue, nausea, tremors, tachycardia, and rocking vision when I walk/jog that makes me feel like I am in a home movie. I have the lightheadedness, and rocking vision from the time I get out of bed in the morning until I go to bed at night. I did a test where I leaned up against a wall with my feet six inches away, and my feet did eventually turn a greyish purple. I was very active when the symptoms started out of the blue. I stopped exercising at first, but started back, and make a point to exercise every day. Sometimes it is the only time I feel near normal. I have found that being in the pool helps with my symptoms, but I am lightheaded as soon as I get out. I have taken atenolol, metoprolol, pindolol (which is when the tremors started) and fludrocortisone together, and am now on midodrine 10mg/3 times a day and Celexa 10mg. I drink two-three liters of water a day, try to take in 3-5 grams of sodium a day, and take vitamins (alpha lipoic acid, magnesium, b12, b1, vitamin C, just finished four months of vitamin D prescription, CoQ10, fish oil), and wear compression stockings. I am a vegetarian, and was put on a gluten free diet a few months ago by my Neurologist with the assumption that I have neuropathy. His wife has been dealing with orthostatic hypotension for a couple of years, and is doing much better with a gluten free diet and Midodrine. So, we are trying what worked for her. The doctors are leaning towards orthostatic hypotension due to an autonomic dysfunction, and POTS has been mentioned by two of them. My GP is on maternity leave, so I have seen her back up twice in six weeks. The first visit she said it was an autonomic dysfunction, but six weeks later she told me it was anxiety and that I was being hypersensitive what is normal with my body because the treatment wasn’t working. She also said that any female with my build would have the same tilt table result as I had. She agreed to trying Celexa, but told me not to read the possible side effects, because I would start experiencing them also as symptoms. Needless to say, I will not be returning to her. The Rheumatologist sent me a referral to Vanderbilt today for POTS. She said that she had two other women with the same symptoms as mine, who had been diagnosed with POTS, see her within a month of my appointment. So, she had already been familiarizing herself with it before my appointment, and printed out some information for me. She also warned me that there would not be anyone in the Atlanta area who could diagnose and treat me, so I should go to Vanderbilt. I was really hoping to find someone at Emory, since that is where all of my doctors are. There seem to be doctors at the Children’s hospital who are familiar with it, but not adult specialists. So, that is my story.

Now to my questions. I have noticed that people mention having “flare ups” or “return of POTS”, which makes me assume that they have periods of time that they are feeling better (not necessarily 100% normal). I have yet to experience a good day since my symptoms started five months ago. I don’t know what caused this, and every test has shown that I am very healthy, aside from the orthostatic hypotension. The assumption by the doctors is that this can be controlled, and possibly self-limiting. What have been the experiences of others?

Another question I have is, did anyone have a flu shot or other vaccination before their symptoms started? I have always been an advocate for vaccinations, but know that people can have bad reactions to the ingredients in the shots. I had my flu shot a couple of week before. I saw a show about a teenage girl with vasculitis as a result of a vaccination, which has made me wonder. I also ended up getting whooping cough as a baby from the vaccination. I did have an ear infection diagnosed when this all started, which could also have been a trigger.

Last question for now, has anyone been diagnosed with chronic fatigue syndrome?

[AllAboutPeace]

Welcome to the group!

What an awful way to start a new decade for you That's great that you have a referral for Vanderbilt. I hope they'll be able to help you figure some things out. Did you notice any difference at all with the gluten free diet?

That's wonderful that your rheumatologist took an interest and was able to help you out ...can't say the same for your gp's replacement...

Re: your question about "flare ups", etc. I can't wait to get past this "flare" it's been 7 months and things are pretty well the same (I am close to your age and vegetarian). I also had no previous health issues before POTS. Everyone seems to be on their own journey with this and there is lots of variability in what people experience.

I have not had vaccinations prior to getting pots, nor have I been diagnose with CFS, but if you do a search for it on this site you might come up with something.

I'm sure you will get lots of great information and support here!

[Lemons2lemonade]

Hi! Thank you for sharing your story! Just an idea, maybe its the car? When I first got sick they thought I might have carbon monoxide poisoning.