Does This Sound Like Dysautonomia/where Should I Go Next?

[Elisa]

Hi folks,

I'm a 34-year-old female who's been experiencing some symptoms without a true diagnosis.

They started in late February/early March when I took some Valacyclovir for some cold sores on my nose. That weekend, I noticed a bout of dizziness and blurred vision that lasted for several days. Then I spent a week with a migrainous visual aura in front of my eyes.

The dizziness lasted for several weeks, but finally vanished. I am left with daily blurred vision, which is worsened by anything stimulating (exercise, coffee, etc.). I occasionally have bouts of sudden dizziness. If I exercise, I 'pay for it' with several days of fatigue. I also need to urinate frequently. Sometimes things look suddenly strange, especially when I'm very busy. I experience lots of brain fog.

My heart will pound rapidly once or twice a month for no reason; I'm not anxious at the moment.

My doctors have given me a CT Scan, MRI, EEG, CBC, metabolic panel, etc., it is all normal. Eye exams, even flurosceine angiogram, are normal except for dry eye. My thyroid was a bit off but is now back to below 3.0. I have started Verapamil, and that has helped the visual symptoms but of course has side effects as I already had low-normal blood pressure.

When I was a child, I used to faint after gym class or after going from the cold winter weather to a warm house.

My therapist has suggested that I could have dysautonomia, but I'm not sure where to go to check out that diagnosis. I live in Madison, Wisconsin. Help?

[MamaTrain]

Elisa,

Welcome to the boards! You are in very good company here with people who really know and understand. I can not say for certain that you have dysautonomia but I can say it sounds very suspicious. I too had a reaction to some medication (Ritalin child dosage) and it threw me into a state that I was sure was the front porch of the devils door! I am almost 1 1/2 years into my ordeal and have learned alot from this forum. I started seeing a very good doctor who also uses naturpathic methods (unheard of around here) to see if she could figure out what was wrong with me. She specializes in female hormones. My values came back in a what can only be described as beyond pathetic. I had almost no estrogen, progesterone or cortisol. She explained that when I took that Ritalin my body freaked out so bad because it could not handle it. My adrenals were so weakened that the stimulant threw it over the edge. I have been on bio-identical hormones and adrenal support for a few months now and I see alot of improvement but not "normal" as of yet! I would suggest looking into every aspect and dont let anyone tell you you're too young to have hormones problems....I am turning 40 in Aug. and I know it happened to me! Good luck and keep us posted. Feel free to message or ask questions. Stay cool as the heat tends to make alot of us go crazy!

KC

[MightyMouse]

certainly your grouping of symptoms could be a fit for a diagnosis of dysautonomia, but the problem is that there is so much overlap with other disorders that it's important for you to try to find a good diagnostician to sort it all out. DINET has a listing of physicians and centers that are accustomed to complication patients like us, and can get you closer to knowing the name(s) of what's going on with your health.

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

[Simmy]

Welcome Elisa.

As MM said, check the physicians list. There are a few in Milwaukee, WI, probably less than 100 miles from you.

Curious that you said your heart pounds rapidly once or twice a month. Do you not feel a substantial increase in heart rate every time you stand up? That would be the unique hallmark of POTS (+30bpm) and is very easy to self-diagnose by performing a "Poor Man's Tilt" (search the forum). Remember though that although rare, there are those who have what I like to refer to as "Intermittent POTS", whose heart rates don't ALWAYS surpass +30bpm when standing, but instead only sometimes. And of course, with dysautonomia, there are good days and bad days. It is also possible that you have dysautonomia and not POTS, which is why you need to see a specialist and, as KC said, have your hormones checked, you're never too young.

Good luck