I have had POTS for a long time now. I was on a great medicine which really controlled my symptoms but now whenever I take my Midodrine...my hands and feet get super cold and my nails turn blue and sometimes i start to shake and the shaking is worse now because of the winter. Does anyone else have this?...my BP also goes down when sitting but up when rising...i dont know its weird. I feel maybe my body chemistry is changing. Or maybe my midodrine is interacting with my beta-blocker. My doc increased my dose for me to take 25mg of Atenolol 3x a day and 15mg of midodrine 3x a day. Its so hard and frustrating finding a medicine plan that works on me. My resting HR is always higher now and is more fainter than usual. Does anyone else have a better medicine routine that works for them?
Talk to your doctor. YOu may need to talk to your doctor about decreasing your dose of midodrine; it sounds like peripheral clampdown. Midodrine is a vasoconstrictor; this is the desired effect but you may be getting an excess of vasoconstriction peripherally and if the symptoms are causing you dyscomfort, the dose may be too high. 15 mg is a higher dose than most people take at a time, so you may find you better tolerate 10 mg. How frequently are you taking it? (Like how many hours apart are the doses?) You may also have room to play with how close together the doses are, so if you were at a lower dose previously and upped to 15 mg because it seemed like you needed more, you may reduce to 10 mg 3x daily and if that doesn't seem sufficient ... perhaps increasing the frequency (decreasing the number of hours between doses) will be more helpful instead. Of course, these are tactics to discuss with your cardiologist/autonomic neurologist!
As for your BP going up when rising, does it just initially go up when you stand, or does it stay elevated? I suppose it's a bit of a moot point ... either way, POTS patients can experience an elevated standing BP and that would not be "abnormal" for POTS. But if you tell a bit more about what the exact numbers are from lying to sitting to standing (on average) and at 2 min and 5 min standing, I can probably give you a few more ideas about things to discuss with your doctor.
The reason your HR seems fainter is the peripheral clampdown from the Midodrine. Your pulse is faint at your wrists (all extremities, likely) and may even be inaccurate when taken at the wrists right now. I have peripheral clampdown from time to time, and thus my apical pulse is always taken by my nurses (this is when they take your pulse by listening directly to your heart with a stethoscope). At home, you can get an accurate pulse that's less "thready" than the one at your wrist by taking it on your neck where it should feel more steady and strong.
You should call your doctor as soon as possible and discuss your symptoms and explain that you don't feel you are tolerating the med changes well and would like to discuss different dosing. There are as many different medicine regimens on this community as there are community members, but I'll see if I can find time tomorrow to dig up some threads where we've shared those for you just so you can get an idea anyway. Unfortunately, it's very very individual which is why it's so much trial and error. Hang in there!! Keep us updated and feel free to ask more questions if I wasn't clear (it's almost 2 AM here so I'm a little brain foggy right now).
Hope you can get this back on track and are feeling better soon,
As I said, it varies so much from person to person what works (and it can even vary over time within one person such that something that works for a while can need to be "tweaked") that I don't know that it's always particularly helpful to see what everyone else takes.
Here's our health page on Dysautonomia treatments:
Keep in mind with both of these links that not all treatments are appropriate for all types of Dysautonomia, either. Feel free to ask questions about any of these and we'll do our best to answer or find you the answer.
Thank You so much for your advice. I will address all these things to my doctor. I always have so many questions since i have had a flare up with my POTS symptoms. I am going to check all my bp and hr from sitting down and standing up. Do you have any suggestions with sleep? I dont sleep at all anymore. Its soo hard for me to sleep. I feel so weak all day if i dont sleep and my HR BP are crazy.
Some people have found relief with melatonin for sleep, but because we're all different, it's best to run it past your doc before starting something new (even something over the counter) to make sure it won't cause any interactions and is safe for you. While others have luck with "classic" (also known as "first generation") H1 antihistamines for sleep—this is a class of drugs including phenergan/promethazine and benadryl/diphenhydramine—I am always reluctant to recommend that here. Many dysautonomia specialists will say that this class of drugs is contraindicated in dysautonomia; this is because of its lack of selectivity, whereas 2nd generation H1 antihistamines (such as Zyrtec) act mainly on the peripheral nervous system rather than also acting a lot on the central nervous system. So while SOME people with dysautonomia do GREAT with benadryl for allergies or as a sleep aid, others can have sometimes dramatic reactions to it. I always recommend erring on the side of getting the guidance of a doctor with knowledge/expertise in dysautonomia before taking one of these drugs UNLESS you know for certain that you've taken it since having dysauto without adverse effect AND a doctor says it's okay to continue taking it, in which case I might be okay trusting a doctor who is not a dysauto specialist about whether or not to take benadryl, phenergan, etc. Otherwise, in my opinion, it's better to be cautious if at all possible. (If you are told to avoid this class of drugs, be sure to have your pharmacist put the contraindication in the computer so if a Rx for one is written by mistake, it will be caught and you won't be given it. There are quite a few of them, and not all of the names are readily recognizable.)
I know some people with dysautonomia take a Rx medication to make them drowsy at night. I used to take actual sleeping pills (at one point Ambien, at another Trazodone), but now other meds I take for other indications have the side effect of causing drowsiness so I just take them at night to help me sleep instead. If you haven't discussed your trouble sleeping with your doctor already, I highly recommend you do so. S/he may want to try giving you a medication (either for the short term or the long term) to help with that, or s/he may want to refer you to a sleep specialist to get a sleep study to see if there is some specific problem that may be causing your sleep disruption. Sleep disorders are found with some regularity in people with dysautonomia. I can definitely recommend getting a sleep study if your doctor thinks you need one; mine found my narcolepsy with cataplexy and I finally had ANSWERS to those symptoms and could start getting treatment for that. Others have found sleep phase disorders, sleep breathing disorders, sleep movement disorders, you name it really. I will recommend that if you do get sent for a sleep study that you look for a sleep neurologist rather than a sleep pulmonologist if at all possible UNLESS you strongly suspect that you have sleep apnea (i.e., if you snore a lot, feel as though you stop breathing during your sleep, etc.). This is because a sleep neurologist is (duh) a neurologist and will likely better be able to see the "big picture" of your dysautonomia along with your sleep disorder (if one is found).
Has your doctor tested your serum norepinephrine and/or urine catecholamine levels?
Yes I do take Melantonin. It makes me sleepy but not enough to make me sleep..I just yawn. I absolutely cannot take antihistamines likes benadryl...i have weird side effect and make my heart race. I have been on Ambien and other drugs...it makes me sleep and relax and i love that feeling. But they dont work forever..they wear off and then make me throw up and cause bad side effects after taking it for so long. Its soo hard getting through the day everyday and then comes bedtime....the hardest part of the day. I'm just waiting for this phase of sleeplessness to get over and get make to my "normal" POTS symptoms. I have talked to my doc for the past couple months about this and they have been trying everything. They said for me to just take klonopin every night. Im just struggling everyday.
I will get a sleep study done for sure. Do you have any suggestions of any other sleep meds i can ask my doctor about? Something like ambien that makes you sleep and relax? I dont know what else to try. My doc just said keep with the klonopin and then let her know on Monday how I'm feeling. Its just when i dont sleep the next day I feel soooooo weak like Im cant move my muscles and cant walk without falling.
No my doctor has not taken my norepinephrine and catechlomine levels. I know i do not have sleep apnea...I sleep with my mom. But when i do finally sleep for the few hours I get I dream dream dream...but i dont care if I dream..I love it because I am at least sleeping!
I also did take my BP HR this morning. I took 12.5 mg of Atenolol and 10 mg of Midodrine. My resting HR was 73 and BP was 101/63. When i stood up my HR went to above 100 and bp 101/73. I notice the lower number is always higher when standing. I am going to keep track of BP HR every day for the next week to get my med routine under control. I also notice when I lay down flat on Midodrine my HR beats hard and i feel palpitations. Is that pretty normal as well?
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