yuliya

I had an bad reaction to dilating drops, I had anxiety and my heart was racing, also my eyes stayed dilated for 2 days. The doctor said that its a typical reaction for a child but not for adults and said it was a type of allergy and not to get the drops again.

I wish I could tell you they gave me X and it worked, but I've tried a few different meds, Ambien, Lunesta, Rozerem, Amitriptyline, Nortriptyline, Gabapentin........none have changed the sleep disorder. Also bunches of over the counter meds and vitamins. Many of these drugs not only didn't help, they made me feel worse. Wish I had some answers for you, but I'm right there with ya on this crappy sleep thang........

Lol well that's good to know. Has here been any teatments that you have found useful. You seem to know a lot more about your condition then most on here, hopefully my doctors will turn out to be as helpful as yours.

Yes I am also interested to know if you are on any treatment for your sleep disorder Todd. I have been on ambien for about 6 month but it's not working that good anymore. The doctor gave me a script for lunesta but the insurance won't cover it and it cost like $275.00 a month so that is not an option.

Has anyone ever had a sleep study done and how did it go? Did you have a hard time falling asleep, staying asleep? What if anything was found during the sleep study? Thanks for all the help.

Yuliya

He seemed really nice and knowledgeable I am glad I found him.

maybe "idiopathic" to them is "we just don't know yet". Doctors are finding new diseases every year. Just because they don't know now doesn't mean it really is idiopathic. I hope you understand what I am saying.

I have become very symptomatic this past September, but the doctor seems to suspect that I have had POTS all my life, or at least very young.

I have heard that people smell smoke or fire before a seizure but I have no idea how true this is. Also there is such thing as a silent migraine, maybe that's what your having and the doctor don't usually care about those since they cause no pain, but neither does a silent heart attack lol. I would ask him next time about those just to put your mind at ease.

Well the appointment went great. The doctor was really nice and spent like two hours with me. Asked lots of questions and did a few tests. The in office tilt test showed a resting heart rate of 76 and a standing heart rate that went up to 136. So he confirmed my POTS diagnosis and I have officially failed my tilt test again. I have never thought in my life I would be happy to fail something but at least it confirms that it's not in my head. He also said that for now we would not do any treatment until we get all my records together and test to try to figure out the cause. He also mentioned that I was a little bit of an odd POTS case since it seams that I have had it all my life. Hopefully this oddity will make it a little easier to find the cause. Dr.khurana also noticed that I was not sweating on my face, and had tremors in my head when I was looking side to side and had a light shined in my eye, but did not say the significance of the finds. Any way he seemed very smart and I feel really lucky to be able to get an early appointment.

Thanks everyone, I'm getting ready to go see him now. Hopefully I have no trouble finding his office since I am not to familiar with downtown. We will see how well it goes

Ophthalmic

The drug is used in eye drops to induce mydriasis (pupillary dilation) and cycloplegia (paralysis of the eye focusing muscle), primarily in the treatment of eye disorders that benefit from its prolonged effect, e.g. uveitis, iritis, iridocyclitis, etc.

http://en.wikipedia.org/wiki/Scopolamine

not the most reliable source but it does mention eye muscles having a hard time to focus.

That just made me laugh out loud. For years most of us are told we have anxiety and its all in our head, then it seems like progress is made in studying this syndrome now all the sudden we are all mentally ill again.

I once had a hyperthyroid detected on blood work, but on follow up it came back clear. My mom has had nodules about your size and they did a biopsy on it and it came back clear (my mom does not have POTS). I have no ideas about how POTS is related to thyroid issues. Sorry I can't be of more help.

I have had a few instances of eye twitching for a few days at a time. There was nothing I could do to help it, and it went away on its own and comes back on its own. I really think its just part of the tremors that I already have in my hand and sometimes in my legs and head.

My appointment was just moved up from October 10 to Monday July 11. I'm so excited and so nerves. what if he can't help me. It seems like he is my last hope.

Yuliya-

Mine are REALLY bad too. Sometimes people stare at me, but there is nothing I can do about it. I try to hold my hand down or lay on it but you can literally feel the shaking through me, if that makes sense. Mine are really bad when I am stressed or I have been standing for a while. If I don't find a place to relax my whole body kinda starts in.

Do you also sometimes get it in your neck? Or calf? Mine is not a prevalent in these areas but it is still there sometimes.

I'm with you...it drives me nuts and has gotten worse over the last 3 months. It also seems like anytime they do any testing it intensifies the problem and makes it worse. I thought it was worse on the Beta-Blockers but went off them for some testing last week....AAAARRRRRRGGGGGHHHHH, it was awful!! Friends are commenting that I need a 'sippy cup' jokingly and while I laugh, it hurts.

On really bad days I have noticed tremors in my legs when standing. Most of the time only my hands are effected, the last neurologist I saw called it a postural tremor. I have no idea what that means or how to help it.

My son's too. The neurologist calls it Essential Tremor- apparently no biggee.

I like how the doctor say no biggee, but it really feels like one to me. I'm sure if they were shaking like that all the time they wouldn't say that. I just constantly get stared at and people asking me whats wrong. It really makes me self conscious, and I wish there was a way to treat it.

I have noticed that my hand tremors are getting worse to the point where I am becoming self conscious about it. What could is be and has anyone found anything that helps?

I have no suggestion but wanted to say I know exactly how you feel. Sometimes I feel like doctor don't care or under estimate the severity of my POTS (maybe due to age or lack of knowledge). I would say that I am a fairly positive person and happy all the time but lately I am having a hard time staying positive since I feel like I will never find a treatment. I don't dare say it to the doctor for the simple fact that they will blame it on a mental issue and give me depression meds when it is not the case.

I would say that I lean toward the hype POTS but I have never been tested for the noriprnephrine, but lately my bp is all over the place with weird narrow pulse pressures. I don't know but I fell like this summer is going to kill me lol. I feel so bad lately.

Lately and I don't know why every time I drink it seems like I have absolutely no tolerance for it. One bottle of beer or a glass of wine and I am drunk, and on top of that it last for hours like its not metabolizing or something, this is all then followed by a massive hangover. I have no idea what is going on with me.

Thank you guys for the insight I so hope he can help me too even if I do have to wait all the way until October, but what is a few month when I have waited all my life for a correct diagnosis, at least for now I have a dx, but not a good treatment plan. Hopefully he can help me with that part.

Also ladies what family doctor do you see and are they helpful with your POTS? And have you seen any other doctors besides Khurana?

Thanks again

Yuliya

I had a root canal and not problems after it or during. I was not sedated for it and just had Novacaine. You can always ask for breaks when you need them.

What is an appointment with him like. What test did you get? Did he diagnose you or you were already diagnosed. Any info welcome.

thank you

Chaos

My bp drops very low abd my highest hr was 197. they said I still had pots?

I think what she was saying is that not all categories have a drop in bp, not that a drop in bp means you don't have POTS