Problems With Stairs And Bending

[Joann]

Hi, I am a new member, although I have been lurking here for several months. Just a little background on me. I am still searching as many are for a accurate diagnosis. My symptoms have now been with me for 15 months. Just this past month I finally had the tilt table test and was told I did test positivily for POTS. I am on two BPs, so although I am battling with extreme increases in BP, that did not show on the test, the doctor did think it may be Hyper Pots.

I have been tested for Pheo tumor, and although confilicting results the overall decision for doctors is probably not. (So reassuring, I rarely get a definitive answer on anything). Now another test came back and they are re-running it for a carcinoid tumor (high 5Hiaa level)

I never get light headed or faint like many on this site talk about, but instead get intense pressure below my sternum, pain on back of head and neck and left sided pain. Left side can include neck, upper jaw or below eye or near ear, left knee and sometimes left side. And of course the high bp and heart rate. My BP medications definitely are helping, before them I could not even sit up.

If I am not in the middle of a bad episode walking seems to help me, I know many people here get worse as they walk. My BP goes down, again unless I am in the middle of a terrible episode. But, I cannot walk up or down more than 2 or 3 stairs. If I try to do a lot f step it will immeditley trigger an episode. The weird part is if its not too many stairs I seem ok, but later on it seems to trigger the problems. I went without doing stairs for a month and while I had some smaller episodes, this past Thursday, I went down about 12 steps (so stupid) and within a couple of hours I was sweating, and the above problems. At bed time even moving in bed was triggering it to the point I was worried I would have to go to ER, where I know they would just watch the BP. Bending too much also sets it off, last sping I couldn't even bend to get clothes out of dresser, that seems somewhat better. Oh, and I can't lift anything heavy.

Does this sound like hyper pots, or something else. I worry this is some type of heart, blocked artery that is not being found. I am sick of them telling me it is not life threatening. When BP and heart rate skyrocket, isn't that life threatening. I have not been able to really function since last January,

Sorry for the long post. I am just like so many others, scared, frustrated, angry. Thanks for any help or suggestions

[corina]

Hi Joann, welcome at DINET! I had a heart cath as my cardio wanted to be 100% sure there wasn't an artery blocked (although it was very unlikely) which there wasn't. POTS in itself usually isn't life threatening. My cardio did a lot of testing as it's still quite rare but in the end I was glad to know that my heart in itself is very healthy. I found that very reassuring. I hope you will find answers that will be of help so that you'll have a better quality of life!

[ukwildcat]

I am so sorry to hear that you are feeling bad and scare. I have had ncs and pots for 15 plus years and still get scared during some episodes. I also have trouble with stairs, bending and lifting things. Pots affects everybody differently, so learn to listen to your body. Your experience with this illlness will be different than the next persons. However, Im still here, even though some days I feel like Im going to die. Also, I worry the long term affects that pots will have on my body, just wonder if doctors really know. Every day is different with this illness, it is like an unwanted adventure sometimes. Things will get better, after you learn how your body and pots react to different things, because though your illlness may not get better, you will understand it better. Even though it is a struggle many times(expect many ups and downs), it takes more effort, and illness may limit what we can do, but try to live your life to the best you can (it may be different but can still be good)

[Joann]

Thanks for your responses. I had an appt. with my primary doctor to go over some blood work this morning. I had called for results 2 weeks ago and told to wait for appt. Well, today I got there to find out the sample was not valid and the test has to be redone! Seriously, this was done 3 weeks ago, and I called to get results, so obviously no one looked at it.

I was waiting because the new cardiologist wants me to switch one of my bp meds, but said to wait and make sure that the test which is used to test carcinoid tumors was ok. So now I have to wait, longer.

She wants me to change my BP of cardura to chlonidine. The cardura was originally prescribed because it is one kind of alpha blocker and went with my metropol beta blocker, to prevent possible pheo tumor. Chlondine is a different type of alpha blocker. I do not know the difference, so now I don't know- do I wait more weeks to change. Too be honest I am so paranoid to change medications, I always seem to have reactions to them. And will this kind work as well with my Beta blocker. I know I should trust the doctor, but I have not had good luck with past ones. The two bp meds have keptt bp down most of the times, and the few times I have even been a tiny bit late, I have noticed right away.

My primary doctor does not know what else to do. She agreed with another doctor that I should try and call Cleveland Clinic. She also said to go back to cardiologist and nuerologist. She has never had a patient with POTS of any kind.

I do think she would work with me, if I had specialist telling us what to do. So I guess I will try and contact Cleveland Clinic. I am continuing to have some bad episodes since past Thursday. I had a month with just little problems, it had kind of given me some false hope that maybe they were gone. I actually was getting impatient at how I was progressing. Now I look back at that time and will be happy if I can be there again!