Guest Posted May 13, 2016 Report Share Posted May 13, 2016 Hello I finally got to see a Neurologist yesterday (the wait list was about 8 months). He took my heart rate/blood pressure 3x in a row laying down, then 3x in a row immediately after standing. Within one minute of standing, my heart rate went up 35 bpm. He seemed really surprised at this because I'm on a beta blocker. He said my blood pressure was on the low end, and didn't change when I stood. He said that dysautonomia is not his area of expertise, but all things indicate to him that it's what's going on. He said he didn't want to diagnose me as having POTS, because it could be another similar, obscure condition that he just isn't aware of. He wants me to go to a specialty clinic for a tilt table test, etc. My family doctor just referred me there a couple of weeks ago. Unfortunately, the Neurologist said the wait list for it will be at least a year, if not longer. He prescribed Florinef, and said he's going to make some medication recommendations for my doctor. I'm on Metaprolol, but he said there are better choices for POTS. I finally have solid proof that something is wrong! So far I've only had my own FitBit results...which aren't "proof" because (according to my disability plan), I could have had my FitBit on someone else when it was recording. They can't argue a Neurologist's findings!! The Neurologist also saw my hands fill with blood, swell, and change colour when I let them hang at my side briefly. I am so happy to finally have answers! This has been a very long (25 year long) road. It'll be a long wait for the specialty clinic, but I feel like the battle is 75% over. I feel like the specialty clinic will fine tune a diagnosis and treatment plan. I'm happy, happy, happy!!!!!!! Quote Link to comment Share on other sites More sharing options...
statesof Posted May 13, 2016 Report Share Posted May 13, 2016 That's great news Draven! Good to see that your neurologist recognized your issues as possibly POTS related. Hope the tilt table tests go well and solidify your diagnosis. Quote Link to comment Share on other sites More sharing options...
Guest Posted May 13, 2016 Report Share Posted May 13, 2016 Thanks, and me too! He seemed to know a lot about it, but specializes more in seizures. He said something is definitely wrong, it's definitely not in my head, it's definitely not caused by anxiety, and it's some type of dysautonomia. I wanted to hug him. He also said I have some sort of abnormal migraine thing, where I have everything that goes along with a migraine but only break through pain (Alice in Wonderland syndrome). I've barely had it since starting on Metaprolol, but have it every day without. Quote Link to comment Share on other sites More sharing options...
statesof Posted May 14, 2016 Report Share Posted May 14, 2016 I've heard of the Alice in wonderland syndrome, you said you had it every day, can you explain what it was like for you? I only ask because I have depersonalization disorder which my doctors thought may have been related in some way to my migraines but it's been a daily thing and when it was at its worst I always explain that the world felt very day dreaming and Alice in wonderland like. Quote Link to comment Share on other sites More sharing options...
Tachy Matt Posted May 14, 2016 Report Share Posted May 14, 2016 That's great news Draven! But I'm still sorry that you have the condition in the first place. that's interesting that your hands pool at your sides because mine do the same along with my feet in the shower. I guess it all comes down to blood flow overall. With this Alice in Wonderland syndrome, do you ever get a feeling that you can't quite describe, sort of like a cloudy perception of your surroundings? Quote Link to comment Share on other sites More sharing options...
statesof Posted May 14, 2016 Report Share Posted May 14, 2016 Hey Matt, just had to comment, I that cloudy perception of my surrounds feeling all the time, it's one of the first symptoms that Aleta me that I am beginning to push my body past its limits, but I often get it throughout the day almost as a normal daily occurance. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted May 14, 2016 Report Share Posted May 14, 2016 Draven that is really great news so pleased for you, when I finally got my diagnosis I was so relieved finally I could stop doubting my sanity ! Wishing you good luck with finding more answers Quote Link to comment Share on other sites More sharing options...
Sam1 Posted May 15, 2016 Report Share Posted May 15, 2016 On 5/13/2016 at 0:39 PM, Draven said: He prescribed Florinef, and said he's going to make some medication recommendations for my doctor. I'm on Metaprolol, but he said there are better choices for POTS. Here's a quick note on the difference in concentrations of metoprolol and atenolol in the brain:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1402194/pdf/brjclinpharm00208-0018.pdf Quote The approximate brain/plasma ratio for propranolol was 26, for oxprenolol 50, for metoprolol 12 and for atenolol 0.2. 2 The low concentration of atenolol in brain tissue is possibly responsible for the low incidence of central nervous system-related side effects in patients on this agent compared to lipophilic beta-adrenoceptor blockers. according to the journal articles I've read over the past few months, atenolol appears to jump the blood/brain barrier the least. And the half-life of atenolol is more consistent in general than with metoprolol. Quote Link to comment Share on other sites More sharing options...
Guest Posted May 25, 2016 Report Share Posted May 25, 2016 Thanks everyone! Sorry I'm just seeing this now. When I'm not on Metaprolol, I have Alice in Wonderland Syndrome symptoms every day, almost non-stop. The neurologist said I get abnormal migraines, where I have the pressure, etc. but only feel break through pain (which still hurts, but comes in short bursts instead of non-stop pain). I think it cycles repeatedly all day when I'm not on Metaprolol for it (which also helps my POTS). I get a ton of weird perceptions with it.... -an overwhelming sense of deja vu (sometimes non-stop, and very unsettling/distracting). It's usually situational deja vu, but sometimes I'll feel like I somehow know every stranger I pass on the street. -I'll suddenly remember vividly a snapshot from a dream I had years ago (I can't honestly say the snapshot is from an actual dream I had, but that's how my mind sees it). It's unsettling, because it's so vivid, but only a snapshot, and I can't remember the rest of it or the context it's in, no matter how hard I try. -I'll feel like I'm outside, looking through a window onto the scene I'm in. -I'll feel like I'm above my body. -Things will be distorted...suddenly my mom will look very small in her chair at the table (she'll look child sized, on an over-sized chair, with an over-sized plate in front of her). My boyfriend's arm will suddenly look very small, but his head will look very large. The rest of his body will be normal. -My vision will freeze-frame. Scenes will very, very briefly pause, then kick back to life. I'm usually not aware this has happened...my only indication is that something will suddenly be a lot closer than it just was, etc. -Trouble interpreting a lot of colours properly. -The room will suddenly get really long and narrow. -Someone talking across the room will suddenly sound like s/he's right beside/behind me. It's startling. -I will suddenly hear a sound much louder than it really is. -I'll get an insanely awesome, all over, warm, tingly super pleasant body buzz. I can actually bring it on or prolong it by sitting very still and focusing on it (when I'm not on Metaprolol). -My hands will suddenly look farther away than they really are. -Everything is kind of foggy...none of these perceptions are crystal clear. I know they aren't really happening. -My vision gets fuzzy/black around the edges. -I get heat wave like smears across my vision. -I see little flash dots of light. I started Florinef last week, and it is unfortunately triggering this again. I've had the abnormal migraines with the Alice in Wonderland stuff every afternoon and evening since I started taking it. I'm at a crossroads, because Florinef is helping my POTS...but I'm not sure if chronic migraines are an very good trade off. :/ Quote Link to comment Share on other sites More sharing options...
Guest Posted May 25, 2016 Report Share Posted May 25, 2016 And thanks Sam1. I'm going to have a peak at that article today. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted May 26, 2016 Report Share Posted May 26, 2016 Draven, that is a very odd phenomena that happens to you. I would imagine it's very unsettling. Just had to comment on the Florinef.... My oldest daughter is having some trouble with her Florinef in the way of intense migraines. The higher the dose, the worse her headaches in general get and the more frequent her migraines come. Sometimes it's hard to tell the difference between a regular bad headache and an actual migraine. She was suppose to take 0.2 mgs daily, that was awful, she's down to 0.05mg (half a tablet) and is feeling the effects of backing down on her dose. But, just wanted you to know that migraine intensity seems to be a problem with the Florinef. Best wishes! Quote Link to comment Share on other sites More sharing options...
Guest Posted June 26, 2016 Report Share Posted June 26, 2016 Thanks for the info DizzyGirls! I'm on 0.1 mg right now, but the neurologist recommended a slow increase. With the migraines, I'm really wondering if that's a good idea...especially now that I see your daughter had the same reaction. Quote Link to comment Share on other sites More sharing options...
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