summer

Elegiamore - Wow. Sorry to hear of your new diagnosis. It does sound like a very tricky combonation to manage. I hope you are able to find someone knowlegable about both. Take care, Summer

That is true that there seems to be no published evidence that POTS progresses to heart failure. But really, how much study has gone into the long term effects of POTS? Has anyone studied POTS patients who have had it for 20 years? Most research seems to be done on teens with POTS and apparently most of them improve. What happens to POTS patients who do not improve, and actually continue to have this disorder for many years. Congestive heart failure is probably a predictable outcome for a heart that has been working too hard for many years. I just think that "no evidence" at this point doesn't mean much because the research hasn't been done. People were not even being diagnosed with POTS 20 years ago.

This is the Canadian Concensus Document on ME/CFS. I think it is very good and includes autonomic dysfunction in the diagnostic criteria. Check out page "8 of 28" in the PDF (page 2 of the document) for diagnostic criteria. It then goes on to describe these criteria in detail as well as treatment guidelines. I know it describes my illness perfectly. It's no joke according to this. http://www.cfids-cab.org/MESA/me_overview.pdf

It wouldn't surprise me that a surgeon would want to keep his private number private, or he would have no life at all. Lots of people would think nothing of calling their doctor on his private cell phone anytime, if they had the number. In fairness, doctors deserve a personal life too. That might mean having to change the number now and then. I wouldn't be worried about it at this point.

I have to say that I have wondered at times about my exposure to medications as an RN. In the course of my career, I have inhaled so many aerosols, and crushed medications, not to mention the meds that could have been absorbed through the skin such as pastes, powders, and injectables. I really have wondered if any of these things could have damaged my nervous system. Of course, I think we would have to be predisposed somehow or this would effect all nurses etc. in the same way. I also think it makes a difference in being able to understand the physiology of POTS and articles that we all read here. Not to mention knowing that doctors really are fallible, because we see it all the time at work. Kudos to anyone without a medical background who has been able to wade through POTS articles and stand up for yourselves to doctors... I'm not sure I could have had I not been a nurse.

I'm an RN.

Hi kit, I would definitely try Griffin's idea first. It sounds ideal.... but if that doesn't work out, I would not hesitate to contact a church close to you to see if someone there could help. Many churches are happy to help people in need whether they are affiliated or not. I have known of times in my own church were people in situations similar to yours were driven to distant appointments, no strings attached. You could ask if you were comfortable with that.

Thanks, Everybody. Hmmm... seems it can go pretty high even with the BB. It's unusual for me. Angela, you asked about my activity at the time.... Just standing still for a few minutes. It is possible that I had not "pumped up the volume" enough though. I may have been slacking on the fluid intake. Usually, this would cause my BP to be lower, but the BB would keep my heart rate in check. Thanks for your responses. Maybe it was just one of those weird things.... of maybe I did forget... could happen!! Summer

Hi Griffin, I have low BP, and can not take a BB alone because it drops my BP too much, but I also take Florinef which keeps my BP from going too low. The combination of the two together work pretty well for me. The florinef keeps my BP up and the BB keeps my heart rate down. I think this is a pretty common combination for POTS. Summer

Sorry. me again ..... I almost forgot (actually, I did forget), BBs can mask the signs of hypoglycemia or even worsen hypoglycemia in diabetics. Ok, I'm done now .

I was sure I remembered to take my meds this morning, but this afternoon my HR was 162. It usually doesn't go over 130 while I'm on my BB. Is this possible? I wondered if I had forgotten it even though I was sure I took it. How high will your HR go when taking your BB? Summer

Reen, Hope things are going ok since your son got home. ....Still praying for you both..... Summer

That's a scarey doctor!! Glad you got a second opinion too, Tearose!

I think BBs are contraindicated for asthma or other breathing problems (or at least they must be used with caution) - also they can make Raynaud's syndrome worse, or I suppose other conditions were vasoconstriction is a problem. I think they can also make allergies worse, and decrease the effectiveness of epi-pens used for anaphalactic reactions.

Wow, Chrissy, I'm glad you're feeling better than that. Hope you continue to improve. It must have been scarey to feel so bad and not have good nursing staff there. I can't believe it took a heart rate of 165 for them to decide to put the moniter on you. Take care and get better! Summer

Hi Rama, Thanks for posting this. I think Erik also posted a link to this webinar a few weeks ago. Yes, it is very interesting, although it took me several tries and a lot of brain power to get through it. One of the interesting things to me was about cerebral autoregulation(CA). He said that if CA is functioning properly, the cerebral blood flow velocity(CBFV) should not fluctuate with the BP ...it should stay basically unchanged even if BP changes (unless it drops below 60 or goes above 140 systolic). He said that in POTS patients you can often see a fluctuation in CBFV with changes in BP while the patient is upright. He suggested this might account for the alterations in cognition. I dug out my old TTT results which included transcranial doppler and, by golly, so it does! My CBFV mirrored my changes in BP exactly. It's so interesting to get a little more insight into what all that testing means. When I first saw it, it was all greek.... but little by little you start to put the peices together. I'm going to have to watch it again, and try to keep that CBFV up while I do. There's much to be learned. By the way, good to "see" you again! Summer

....Oh yes, and I also develop a butterfly rash on my face with sun exposure that takes a very long time to go away. I also had a negative ANA so I guess it's not lupus.

I just replied earlier today to a post about beta blockers and rash. I have fair skin and have always burned very easily. I never tan, just burn over and over. After I started taking the BB I began developing a rash on any part of my skin that was exposed to sun. I also burn in about 10 minutes. I experience worsening autonomic symptoms too, even if it's not hot - just sunny. Kind of takes the fun out of those beautiful summer afternoons, and no more beach for me . I do find that wearing sunblock prevents the rash. Summer

The rash happened several times before I started being very careful about sun exposure. As I said, I've always burned easily, but the BB seemed to make it worse, along with the rash. I did find that if I was careful to cover my skin, or wear sun screen, the rash did not appear. The BB really helped me, so it was worth it to me to take the extra precautions so I could continue taking it. I don't do well in summer heat, so I don't spend a lot of time outdoors in the summer anyway ...at least not in the afternoon when the sun is the strongest. It would be strange, though, for you to develop the rash on the back of your neck if your hair was covering it. The sun rash I had was basically everywhere the sun hit my skin ...arms, legs, neck, upper chest. It had well defined borders along the edges of my clothing. Maybe yours is not from the sun. Was it hot outside? Could it be a heat rash?

Hi Melanie, I did not develop a rash immediately after starting a BB, but a couple of months after, when summer hit, I went outside in the sun for about 15 minutes and developed a rash on all the areas that were exposed to the sun - just as you described.... small, red, itchy bumps. After it happened the second time, I realized I had developed a sun sensitivity from the BB. I am fair skined, and burn easily anyway, but I never had the itchy bumps until starting the BB. Any chance you got some sun on the back of your neck? Summer

What is it about stress, anyway? Sara, sorry to hear you are feeling that "downward pull" again. It is so discouraging to be feeling better and then to feel like that is starting to slip away on you. I know that stressful times really bring on my symptoms and can certainly cause a crash. I'm sure I can't give you any advice that you don't already know all too well... try to get lots of rest, and hydration, pace your activities, bla,bla,bla..... If it helps any, there have been times I thought I was headed for a full blown crash and it ended up being a dip. I hope that's all this turns out to be for you. I do wish you lots of luck over the next weeks. It's very stressful just worrying about keeping your job. Hang in there... we're rooting for you Summer

Yes, he really should be checked out before he gets on a plane to Japan. A combination of chest pain and faintness should not be ignored especially with a history of high blood pressure. Go to the ER. Don't worry about how they look at you when you get there. It's the right place to be with those symptoms.

I have a theory about this, or at least how it might work for me.... I always feel terrible when my systolic BP is lower than 90. No exceptions. Now here is the strange part... Often my HR will be up around 130-140, and my bp around 100/70 and, for a while, I will feel fine like that, because my body is compensating adequately so that my BP is not dropping too much. But I think that after a while, this high HR exhausts me, and I start to feel like crap, even though, at times, my HR and BP may have already stablized. To me, it seems almost like an after-effect of the tachycardia. Of course, sometimes the tachycardia lasts and I might feel the exhaustion while I'm still tachycardic. For that reason, I might feel ok with my heart rate way up, or I might feel bad, depending on how long it's been up there. I find that on days when I am really tachy in the morning, I feel very fatigued for the rest of the day, even though my HR might have come down. That's my theory. Does that make sense... does this happen to anyone else? Summer

I like the designs - especially number 3 ....but I'm guessing you'll be answering more questions, not less! Not that that would be bad. You'll educate a lot of people.

Yes, Dana, what you're saying does make sense, although I would not go as far as to say that ignoring other health issues makes the diagnosis of dysautonomia a misdiagnosis. As with any illness (ie. MS, parkinson's, diabetes), other medical conditions are well known to co-exist with dysautonomia, or may even contribute to it. Not treating these other issues, or contributing factors would by negligent on the part of a doctor. The diagnosis of dysautomonia should be a starting point, not the end of treatment. Although, I think you're right that it can happen ....and dysautonomia patients can allow it to happen by deciding that every health issue is just another crazy dysautonomia symptom. I'm glad you posted your opinion on this. It's a very interesting point to consider. Summer