amykrawciw Posted February 15, 2008 Report Share Posted February 15, 2008 Hi! I'm relatively new here, and haven't done much posting. i have a severe autonomic neuropathy that keeps me on bed rest most of the time. I have a terrible time with my blood pressure and heart rate, like everyone else with POT/ autonomic dysfunction. However I got very sick with bronchitis/pneunomia in Nov, and my blood pressure started going out of control high,(240/150) in fact they hospitalized me and took me off all my autonomic meds (mitodrine, florinef, mestinon,) However when they did that, I couldn't even get to the bathroom without passing out, my BP would just drop that much faster, but climb really high othersie. I am now trying to balance high and low blook pressure medicine becasue I'm over the pnemonia, and my bp has come down alot, it is still running way to high.(150-110) I thought maybe my neuropathy was getting better, and got so excited, but that isn't the case because if they take away my low BP meds, When I stand it drops to (80/50) I am in worse shape then ever. My docs can't figure it out, they have no idea what's going on. I don't see Dr. Grubb again for a couple of months, and I'm just really curious to see if there is someone else out there stuggling with this because it seems so contradictory to me. Thanks for your time and consideration Amy Quote Link to comment Share on other sites More sharing options...
helen.t Posted February 15, 2008 Report Share Posted February 15, 2008 Hi Amy, I don't have any great answers to your problem other than I have shared your experience with fluctuations of very high and low blood pressure as well as very fast and slow heart rate. It has had spells of being much worse when I'm ill with something else and I think it is because our bodies do not work in the way they should and so when you get something in addition it causes mayhem. I wasn't given any treatment for my POTS initially due to the variations in my blood pressure as they were worried that it might exacerbate the problem. However I am on Midodrine now which seems to be ok. I think you may just have to take it easy for a while until your body settles down and considering the severity of your illness it may take a while. my advice is to try not worry about it and go slow with taking up your meds again. Let your body tell you what it needs and keep up fluid and salt intake as well as good protein foods.I hope things settle down for you soon. It is a horrible situation to be in. I've been there and still am there to a degree myself. Take care with lots of hugs, Helen Quote Link to comment Share on other sites More sharing options...
Priscilla Gilman Posted February 15, 2008 Report Share Posted February 15, 2008 Amy,I've never posted before, but your post has dislodged me from my silence. I can't type much so I won't say much, but my blood pressure also goes both directions, though my highs are not near as high as yours. Without the meds I might get there. I take verapamil and florinef; it isn't everything, but it works ok for me. Somehow the combination keeps my pressure down and helps it stay up at the same time, as well as keeping my hr in a more reasonable range. But I have had to be careful that the verapamil is not causing low bp. Its tricky and I can't say my doctor is what I would like him to be. I'm really glad you have Grubb on your case.Best,Priscilla Quote Link to comment Share on other sites More sharing options...
amykrawciw Posted February 15, 2008 Author Report Share Posted February 15, 2008 Bless your heart - Helen!Thank you so much. I feel muuch better. The mitodrine actually seems to be a very stabilzing factor, I've noticed on several occasions my high blood pressure going down after taking mitodrine because it calms down my HR. I have found that the high BP definately 'flares' up with activity. The more I do, or the more stressful things, or any outside stressors, like colds or infections worsen the seesaw effect. I can't tell you how much I appreciate your advice, and reply and what a comfort it is to know that there is someone else out there with the same thing. I'm so glad I posted a message. This seems like a wonderful support network. I agree with your assesment, the connections are just not working right and the messages not getting through like they are supposed to. I am just not so good at resting anymore than I already have to......i'm sure you understand...Thanks again and take care of yourself! Amy(Sorry about all the typo's in the previous message, I was up at 3AM and fretting about my blood pressure and not paying enough attention). Quote Link to comment Share on other sites More sharing options...
amykrawciw Posted February 15, 2008 Author Report Share Posted February 15, 2008 Amy,I've never posted before, but your post has dislodged me from my silence. I can't type much so I won't say much, but my blood pressure also goes both directions, though my highs are not near as high as yours. Without the meds I might get there. I take verapamil and florinef; it isn't everything, but it works ok for me. Somehow the combination keeps my pressure down and helps it stay up at the same time, as well as keeping my hr in a more reasonable range. But I have had to be careful that the verapamil is not causing low bp. Its tricky and I can't say my doctor is what I would like him to be. I'm really glad you have Grubb on your case.Best,PriscillaHi Pricilla! I'm so glad you wrote. This was the first time I ever posted anything myself. I just couldn't take it anymore. I couldn't sleep and at 3AM things seem pretty dramatic. I really appreciate your reply and I'm so comforted to know I'm not the only one. I'm sorry that other people have to go through it, but I didn't know if it was something unrelated to the autonomic dysfunction, or what, although I couldn't see how it could be. I haven't heard of the verapmil, but I'm going to look into it. Thank you so much! Amy Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 15, 2008 Report Share Posted February 15, 2008 Bp fluctuations are fairly common for POTS patients. The meds you mentioned all raise bp (as you know). You mention you are bedridden--is this what your doctor has recommended, or you are just unable to stand/sit for any length of time? I have also been bedridden in the past due to POTS (weakness and inability to stand), but it is very important not to become deconditioned as that will only make your symptoms worse. If you are allowed by your doctor to exercise, some kind of exercise, even if gentle floor exercise is really important for POTS patients. Keep up your fluid intake, and salt too (if your doctor has recommended that). Ironically for me, salt intake seems to bring higher bp down--tends to stabilize my bp--although most doctors will tell you to cut salt if you have high bp.Hope you get some answers soon and start to feel better. Most POTS patients DO get better. Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted February 15, 2008 Report Share Posted February 15, 2008 I take lisinopril at night - a short-acting ace inhibitor because when I lie down my pressure goes up. I take atenolol also - a long-acting beta blocker to keep my hr down. Then I have to make sure I spend most of the day sitting at least semi-upright. My numbers have been scary high... 210/120 - but I have to do a balancing act because they will hit 80/40 in nothing flat. Quote Link to comment Share on other sites More sharing options...
amykrawciw Posted February 16, 2008 Author Report Share Posted February 16, 2008 Bp fluctuations are fairly common for POTS patients. The meds you mentioned all raise bp (as you know). You mention you are bedridden--is this what your doctor has recommended, or you are just unable to stand/sit for any length of time? I have also been bedridden in the past due to POTS (weakness and inability to stand), but it is very important not to become deconditioned as that will only make your symptoms worse. If you are allowed by your doctor to exercise, some kind of exercise, even if gentle floor exercise is really important for POTS patients. Keep up your fluid intake, and salt too (if your doctor has recommended that). Ironically for me, salt intake seems to bring higher bp down--tends to stabilize my bp--although most doctors will tell you to cut salt if you have high bp.Hope you get some answers soon and start to feel better. Most POTS patients DO get better.Hi! Thanks for your response! The bed rest is Dr recommended, due to the severity of my disease. I don't have straight up pots, I have a sevee authonomic neuropathy which as Dr. Grubb explained, is in a different category than POTs althought it has many similar symptoms. It is due to the fact that I'm unable to sit / stand for any length of time, but I also require 24 hour 0xygen because my heart and lungs are too weak to pump enough o2 through. It's complicated. I do what I can. I do leg lifts and stretching/toning exercises as much as possible, however I have a myopathy that actually causes me to get worse the mroe I do, so I get in trouble the more I exercise, from Dr's, and my caretakers. I do leg lifts in the middle of the night so I don't get caught I was a big fitness freak before I got sick and this drives me absolutely nuts.... I have learned to adapt as best I can. I have been throught ever test, dr, treatment and experimental treatment I think they have that I can find. I even found some that I was going to try to help write the protocols for, but ended up being too high risk at the last miinute. I'm 31 with a 5 year old daughter... if there was any way on this planet I could get up and do more, I would. My greatest battle every day is not doing to much, and most days I end up hurting myself, which is when my BP seems to soar, but the high BP is a relatively new addition, as I've been sick for 4 years now and just developed the high BP last Nov. I appreciate your advice and help. This has been a wonderful group I'm so glad I posted. It has given me a chance to reach out and feel less alone. I haven't wanted to give in to the fact that I was 'sick' for a long time, but I'm starting to reach out more to people and it helps immensely. Thank you so much and best wishes to you too! Quote Link to comment Share on other sites More sharing options...
amykrawciw Posted February 16, 2008 Author Report Share Posted February 16, 2008 I take lisinopril at night - a short-acting ace inhibitor because when I lie down my pressure goes up. I take atenolol also - a long-acting beta blocker to keep my hr down. Then I have to make sure I spend most of the day sitting at least semi-upright. My numbers have been scary high... 210/120 - but I have to do a balancing act because they will hit 80/40 in nothing flat.Hi - That's exactly what I take.. Lisinopril. It seems to work fairly well for bringing down my really high days. My systolic doesn't usually get that high, but my diastolic has been routineline running around 110 varying 100 - 130. I just have troulbe sitting up right as that causees me problems too.. It's a catch 22. However I can sit up a lot more now that my blood pressure is high so that it a good thing, but I tend to try to do a lot more and then I guess it's too much and it getss higher, which thanks to the postings, I'm starting to understand is pretty common. I really appreciate your response! Please take care of yourself and thank you so much! Amy Quote Link to comment Share on other sites More sharing options...
Sunfish Posted February 17, 2008 Report Share Posted February 17, 2008 amy et al -to the two of you who just posted for the first time , welcome & THANK YOU for taking the plunge into posting. it may sound a bit strange, but reading this discussion thread gave me that "me too" feeling that brings most people to the forum for the first time in quite awhile. i know that's what brought me here years ago, but as much as i love my DINET family the "me too" factor isn't something i feel too often here anymore. so as pathetic as it sounds i almost got teary eyed when i felt it again last night.amy your brief description of your health situation had me saying "that sounds like me" in many ways as i'm also in the land of non-POTS (though as you said many things are very much the same). i'm not on oxygen at the moment but have been at times and have plenty of other tubes & wires & lines that i'm hooked up to around the clock. i too tend to push the envelope rather than airing on the side of caution, and i've been deemed "too sick" to qualify to research protocols. your statement of "it's complicated" sums things up pretty well so i'm sure you get the idea . i'm glad to have you here & priscilla you as well...i took a brief look at your website last night & would have liked to read more but sleep was long overdue!but on to the high BP question...i just recently have entered into the realm of high BP in addition to low. i've generally had low BP - extremely so at times - for the more than ten years that i've had a dysautonomia diagnosis of some type. over that time i've had higher spikes occasionally but never sustained higher numbers. but the past few weeks my numbers have gone through the roof. the nurse who first caught this at my PCP's almost went through the roof herself as she couldn't believe i could have numbers that were more than double (& almost triple) my "norm". like you amy these numbers have increased the time i'm able to sit, but standing/ walking still brings a plummet so it's a matter of trying to balance the two. i haven't been taking my high dose of midodrine (15mg 3-4times/ day) but unless i'm over 190 & symptomatic (i.e. headache) i'm not taking anything to lower things either. since this is a newer development for me we're sort of playing it by ear.my docs who are most in the know re: my autonomic craziness don't seem to be too surprised by the change as it's just the flip side of my ANS being horribly out of whack. while the sustained higher numbers can cause their own problems i'm loving the fact that they are improving my functionality, if not necessarily my underlying state of health. and my docs don't really want to mess with anything that is helping my quality of life at the moment. as my PCP put it, there are a lot of other things that are going to kill me before high BP. if i haven't mentioned it before, she's not one to beat around the bush . but while he's not quite as blunt, ultimately Dr. Grubb (who i saw this past week) agrees.that's all for now, melissa Quote Link to comment Share on other sites More sharing options...
amykrawciw Posted February 17, 2008 Author Report Share Posted February 17, 2008 (edited) Melissa, Thanks so much for taking the time to reply. I'm encouraged by the fact that you have been on and off oxygen, that there is a chance I could get rid of this for a while at least. I was starting to think of designing a line of jewelry for the cannulas to make things a little more interesting. I figure if I have to wear it around and feel like a a white elephant in the room, at least I could add a little style to it . I love your way of looking at things, I was pretty excited about the fact that I can sit up for quite a bit longer than usual, and even stand up and walk around the kitchen a bit. It's not such a bad deal. I'm having trouble with the bottom numbers, more than the top, my docs get upset when the diasolic gets over 110, for any length of time. I like the attitude of your PCP. She sounds wonderful! It's great to know you've talked to Dr. Grubb about this too. I'm so glad I posted. I have been so relieved by the response and support I've gotten from people here. It's amazing. I've been so aftraid, even in the medical world to talk about my illness. Even people who should understand, like the neurology interns, most of the time when I tell them I can't sit up for more than 30 minutes, they look at me like I have three heads, and I'm so gunshy and afraid to talk about my condition with anyone because I get these 'you must be totally nuts looks' and I always feel like I should be trying harder or doing more to 'beat' this. I'm almost ashamed which I think it is why it has taken me so long to find a support group.It is so nice to find people like me and to know there are others who understand. I nned to make some kind of business card/pamphlet to start handing out to friends and relatives when they ask "what is wrong with you?" or "what is it you have, exactly". I hate talking about it, let alone trying to explain the gory details to others. I can't say that I would have understood them myself before experiencing them, and most days I stil find them unbelievable. Anyway - enough rambling.Thank you very much - and I hope this keeps you posting for a while! Take care! Amy Edited February 17, 2008 by Sunfish quote removed Quote Link to comment Share on other sites More sharing options...
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