lloppyllama

Hello, Just wanted to welcome you to the forum, along with tell you that my Midodrine doesn't really affect my blood pressure too much either. ONce I stand up and such it doesnt get as low though, so that makes a difference, however overall throughout the day its about what it was w/o the Mid. Good luck, Feel free to PM with any questions or if you just need to vent! Mary

For me I take my 5mg and then about 20 minutes later I am out of it. So that is good if I am going to bed and just lay there for the 20 minutes while I wait, but if I find something I still have to do and try to stay up, I get really sick, and high too. So thats not good. I'm not sure when you take it exactly, but if your not getting 8 hours of sleep that would probably explain why you are so groggy. Maybe try taking with some bread or something like that at night, so that its not the only thing going into your stomach, perhaps that would help with the grogginess in the morning. Good luck! Mary

I use melatonin every night. Right now I take 5mg, but once this bottle runs out I'm going to start taking 6mg, which is the max dose my doctor told me to use. So your 9mg sounds high to me, but I might only be aloud 6mg at most because I am still only a teenager. It works well for me, I too have RLS, and so the melatonin helps me get to sleep and then stay asleep. I am also on nortryptiline 50mg before bed as well. Good luck! Mary

I know what you mean, I find myself forgetting quite often...which is not good for my health at all!! I really have not yet found anything that helps me to remember I just try really hard to remember the times I take them, and then take it that time everyday, so that I dont forget. When my sleep paterns are different that does mess things up somewhat. I use a container for my meds that are labled for each day of the week, its like a giant one of those SMTWTFS things.... but there is one for each day, with 4 different times to take meds, which works well for me because I take meds 5 times a day, and the 5th is right before i go to sleep so i just keep it by my bedside. This way I will know if I have taken my meds yet or not, but that doesnt help me to remeber all too much. Good luck!

Hello, and welcome....I know how you feel with the migraines, I was like you and had them for a long time straight before being diagnosed, I had a migraine for about 5 months straight before I was finally diagnosed with POTS and began to feel some relief after starting treatment, I hope you will feel some relief as well, in due time, best of luck, and welcome to the family! Mary

I think Dr. Low sees teenagers/children, I am not sure on that one, but have a friend from this site who is about 20 who see's him, and has been since she got sick a few years ago. I believe I have already told you my experience with Dr. Fischer, but like I said before I wholeheartedly recommend him, and honestly believe that your daughter would most likely really like him. I am actually going to see him tomorrow But yes he is a wonderful doctor! Good luck! Mary

Thanks, thats a very good one!

Hello Heather, welcome! Im only 16 so I have just recently gotten the "chance" to get my license. However though I dont have the same exact issues as you do with fears of driving, I am worried I will get bad abdominal pain and have trouble breathing, and then like "black out" kinda. I have been really busy and have not had time to get my license, but honestly I'm really quite scared as well!....like you said, what if something happens and I end up crashing...that would not be good. I dont know how many meds and such you are on, or what exactly your treatment plan is, but maybe you could alter something there to make it more "intense" and perhaps that would help. Good luck! Welcome, and happy new year! Mary

Hello Harper, welcome to the board, I personally would recommend trying a Beta-blocker, as it has made a world of difference for me, so if you aren't able to do everything you used to, it might be worth a shot. Good luck and welcome! Mary

I am doing a project on Dysautonomia in my health class and am going to have Q&A section to my presentation, and would love some feedback from you guys as to what would be good questions that "normal" people who dont know what dysautonomia is. (the Q&A will be after the presentation, so they will know the basic stuff we "teach" them but will probably still be unclear) Thanks for the help! I really appreciate it! Happy new year! Mary

I think that sounds like a good idea, and would most likely be helpful to you, however I would deffinetly check with the doctor who prescribed midodrine for you about the dosing first, just to be safe. Good luck, hope it starts to work better for you on a new "schedule".

I actually saw that article a few days ago when looking for a health article for health class, read through it and said to myself...I kinda feel like she has alot of what I do, perhaps she needs to go to a dysautonomia doctor....

I too am very vitamin-D deficient. I take supplements, and it my vitamin-D is still very very low. My doctor thinks that there might be something wrong with me where like I don't absorbe vitamin-D, but we aren't going to look into that for a few more months i guess...idk I'm not really sure.

I get goofy visual disturbances, my doctor (who is a my POTS doctor) just chalks it up to another weird POTS thing, and says to just ignore it. I would guess that that is all it is, if you were to tell you doctor I dont know what they would think it was since they are specialized in POTS, if I were you I would mention it to them, but not get to worked up about it, I would just tell them so that they are aware of the fact. For me usually when I have goofy things with my ears or eyes, they go away in a month or so, and then another crazy thing will appear....LOL. So even though its quite bothersome and hindering, I wouldn't fret too much about it, our bodies are really messed up since our ANS isnt regulated properly, so goofy things are bound to happen!! Good luck, it if persists for too long or gets worse, I would think about looking further into it to see if there is a different cause than POTS, otherwise your just one of the lucky crazy POTSies! Hope it gets better soon! Mary

Clever!

Thanks guys!!! Im very excited to eat my cake, I will eat a piece for all of you!!! Love, Mary

Even though what Mack's mom said is true for this particular person, I would say he is a great doctor. The meds he has given me have made such a difference. I went from missing half of the school year last year.....to now this year being more involved in things and busier than anyone else at my school that i know....including upper class men, so i would say i have had a wonderful response to his treatment....just for an uplifting experience....i guess you could say. But ultimetly the decision is up to you and your child, but I hope whatever you do works out well for you, good luck!

Im like Rachel, the only way i can sleep decently is to take melatonin, I myself take 5mg at night, at it makes a world of difference....so i don't know what led you to believe we were to avoid it, but it works great for me and was suggested by my pots doctor.

Hey, Sorry your having such a hard time. I myself have never truly fainted, as that is not one of my symptoms, however I come close, and fall over a lot, but don't truly "pass out", like they said earlier though I didn't pass the tilt table test. Its so hard when they think its from depression, I kept getting told that too, because i was so frustrated i would cry and then they would think im depressed when actually i am a very happy person who loves life....so i know where your coming from, but its strange that you have actually been diagnosed and they are trying to tell you its just from depression. I dont really have much advice, but im here if you ever need to vent, as though im not in college, i am in HS which has whole different issues......as im sure you remember.....keep looking for a wonderful doctor though, they are out there!!! good luck!, and welcome! Mary

aww thats very nice, it brightened my day! thanks for sharing!!

Dr. Fischer is my POTS doctor, he is who diagnosed me and he is who is treated me now, and i must say i absolutely LOVE him!!! I have had alot of different doctors in my day, and he is by far my favorite. He is very intelligent, wonderful to get along with, and just overall a great doctor. I would deffinetly look into taking your daughter there, as he is a doctor that is hard to get, and if you have the option, i would take it. So yes i have had a wonderful experience with him and would deffinetly recommend him. Hope this helps, if you have any question feel free to PM me! Mary

I hate that. Whenever i talk to people about something they always bring up there little problems, like how "o yea yesteday i got a flu shot, and i can still feel where the injection was, and it hurts so i cant even concentrate" im like seriously!!!!!! omg! In band i sit next to the biggest brat in the school and she complains about everything. As much as it i just look at it as an opportunity for me to become more patient. I also have to remind myself that god knows how well i handle this and how tough i really am, i shouldnt seek praise from those around me for how tough i am, when really god is the only one in life i want to please, and so he knows, and that is all that matters. But some days its really hard to remember that one... Hang in there everyone, we know were tough, and if no one else can believe that its their own problem, i guess its just another thing we will have to get used to!

My body is the same way! In the summer i am unbearably warm, and now im always freezing. My hands are so cold its quite gross actually i feel... But i would rather be cold than too warm, i handle the cold pretty well too, its kinda a mind over matter thing, and if i concentrate hard enough i actually wont be as cold, i just have to relax. But yes like earlier posts have said, its just because our ANS system cant regulate our body temp like a normal person's would. Good luck on keeping warm!

I usually eat a PB&J or i just have a granola bar type thing. Its too hard to make a "real" meal, plus there just isnt the time!

Yep I used to get that all the time before I was diagnosed. Now I will still get it frequently, but with the meds im on it helps control it so its not so noticeable and hindering.