High blood pressure

[Amy]

Would someone be so kind as to respond as I am not sure I am doing this correctly. I posted a message last night. I spent 11 days in the hospital and I now have a positive diagnosis of pots. I have had many things happen over the last three years. Now they all make sense. It only took blacking out with no warning, breaking my nose and the orbizt around my eye to figure it out. I was twice hospitalized with chest pain. I also almost died last year after having a major surgery fused neck c3-c7. I spotted breathing and had to be resusitated (spelling?) Has anyone else had trouble with anthesia? I have another surgery coming up and it makes me nervous. My cardio doc is also an electrophysiologist and he says I should have any surgeon contact him first.

Also, has anyone had a problem with high blood pressue as a result of taking midorine? Before I had pressure of 100/70 now it is anywhere from 179/104 to 148/99. Yesterday my cardio doc said for me if he can keep it under 180/100 he was okay with that. I did not ask the long term effect on my heart with that rate. He has already cut the midorine down to5mg a day. I was taking florineff and topral when I had this last passing out problem so they do not want to take me off medication as they feel I am at great risk for bodily harm.

[morgan617]

Welcome Amy, I am shocked that a doctor would tell you a BP of 180/100 is acceptable. I understand if it falls too low and you faint, that's not good either. Am I understanding that it is always this high now? A BP like that , that's constant greatly increases the chance of stroke, so I guess I need clarification or am too fogged to get what you are saying. So, is it sporadically high or always high? sorry to be a dunce but am in sort of a crash. morgan

[Amy]

Morgan,

My bp at the doc office was 148/99. AT the nuerologist a few days earlier it was 179/104 those are examples of where it has been. I asked the cardio at what point would he be really concerned and he said if it went over 180/100. I guess after spending two weeks in the hospital and having injured myself badly there is great concern of taking me off midorine which would make my blood pressure go down.

Talk about feeling like an idiot, I just standing there introducing myself to a new neighbor I had never met and one minute I was talking and the next without any warning I did do a faceplant into the street and had serious injury. It really scared me. In the er another lady same thing happened only she ended up with a closed head injury and was on a ventilator. So they were taking me very, very seriously plus like I said I did fracture my face and nose and was bleeding every where.

I hope you are getting support from this group. I just joined and feel like I need support to. It helps to talk to others as no one you ordinarily would talk to including your docs know anything about this. I said to my cardio doc on Thursday that one thing I had discovered is that none of my other docs know anything about this and he agreed they would not know and that most cardio docs ill only have heard of it but not know anything about it. Trust me as last week I saw lota of specialists -another nuerologist, got an eeg, saw my nuerosurgeon to rule out scare tissue around veins in my neck, saw my oncologist - I have pre-cancer of the breast, taking tamoxfin, also have a nodule in my L lung and diffuse spots in the right that they are watching, having ct scans every 3 months. Anyway none of them know about pots.

Good luck with the ttt. I had one in the hospital they already new I had this at this point. It was like someone else said, gold standard and then all the cardio guys and gals were able to agree. It can be a frustrating process, sept of 04 i was in the hospital for a week, had chest pain and they did a bunch of tests all neg. The only problem was pvc's and tachacardia. The cardio guy that time released me when he knew i would go from 60 bpm to 190 upon standing. The nurses were horrified he was releasing me. They said, you will pass out. Well eventually I did at work one day. I was no hurt that time but I decided I couldn't live like that and went back to the cardio office, saw a different doc. He took my pulse after just standing up out of the chair and I had the same result. He did an echocardiagram just to make sure everything was okay and then he put on topral and florineff.. It was much better but then had this other time of passing out and I have ...told you how that went. So it did take a while and there was that period of time from Sept to NOV that I was very sick, headaches, dizzy, confused I had a hard time functioning and going to work. I am still working but it is difficult.

I also feel very depressed at this time. I have a lot going on in my personal life and then the lung cancer scare is hard to deal with.

Anyway sorry to go on forever. I hope you feel better tonight and have a good weekend.

[corina]

Hi Amy,

you have a lot going on right now, I'm very sorry to read about all your trouble. You found the right place to be. I think we are a very special group and not just because we all have POTS . You'll find a lot of warm and caring people here.

As for the anaesthesia, I have very much trouble with that as well. So I think you better follow your cardio's advice and discuss it with him before you have to do surgery.

As for high bp. I was told by my last neuro that he could live with my bp being 180/100 although I never reached that point. In time I think that will be bad for your body but maybe you could lower it in time and your bp stays at a reasonable level?

I can understand you feel depressed, especially since it's not only the POTS (although that would be enough). A lot of us feel depressed (at times). But you know, when you look outside and see the sun shine that might help a bit. Hold on Amy and I'm very glad that you found us, we'll be here to talk to!!!

Corina