jclair Posted March 12, 2006 Report Share Posted March 12, 2006 Hello everyone. I am new to this board. And am very happy to find a place like this.. However, I have a problem that seems unique.. I do not have Orthostatic hypotension, but Orthostatic hypertension. My bloodpressure goes up when I stand.. The longer I am up the higher it goes, it does not drop suddenly, and I frequently pass out when this is going on. I have had this problem for 4 years now and have all of my doctors in Kentucky baffled. Some doctors say its not possible, and don't believe it until they do orthostatic bp's. Some don't believe it even then. I have been treated with many different beta blockers. Also with Florinef, however this medicine causes me to swell. I have limited my water intake it seem to get worse if I chug a lot of water. I have tried to increase my salt, however I cannot get enough of that to help. The medicines seem to work for a little while, but eventually they wear off, or my body fights them and it has to be changed. I have been hospitalized many, many times, for weeks at a time to try and get this under control.. My heartbeat rises when I stand as well, over 20 beats, which sounds like Pots, except that my bloodpressure also rises an example.. laying 126/88 ..sitting 134/96..standing 143/110.. sometimes worse, sometimes better. If anyone has a doctor out there who can give advice I would appreciate it.. I am no longer able to drive, my quality of life has decreased.. The closest diagnosis is some form of autonomic dysfunction.. Mri's are normal, ct scans, eeg, tilt table test, etc..all okay. ANY ideas would help, I am 39 years old. Please help and thanks.. Quote Link to comment Share on other sites More sharing options...
Ernie Posted March 12, 2006 Report Share Posted March 12, 2006 Hi,Welcome to the forum.I have gone to Mayo or Cleveland Clinic? Quote Link to comment Share on other sites More sharing options...
futurehope Posted March 12, 2006 Report Share Posted March 12, 2006 Jclair,Welcome to the board! Sorry you have to be here.I get hypertension when I'm standing. I'm not being treated. I just don't stand (or sit) much. I recline a lot.If I must sit or stand, I will get hypertension and a headache. I haven't fainted, but I feel really badly when "vertical".When in lines, I go up and down on my toes a lot and when waiting in a doctors office I'll keep my feet up or recline and wait in the car and have them call me on my cell phone. I usually have high BP by the time I get into the doctor's office. The high BP happens in a few short minutes of being vertical.When I know what to do about it, I'll post. Until then, my life has been turned upside down so I understand where you are coming from. It's no fun. Quote Link to comment Share on other sites More sharing options...
jclair Posted March 12, 2006 Author Report Share Posted March 12, 2006 I have been to the cleveland clinic which was pretty much a waste of time. They were going to do blood volume testing, however i have no good veins, they couldn't get blood or get an iv started so they sent me home, i did do the tilt table test though. My life is pretty much on hold, my sister found this site for me after she did some research. Thank God for that.. Any other suggestions? My appointment with Dr Grubbs isn't until september.. thanks Quote Link to comment Share on other sites More sharing options...
dianaD Posted March 13, 2006 Report Share Posted March 13, 2006 Hi,I also have high BP and tachycardia when vertical. I went to Mayo, and they said that is common for the hyperadrenergic form of POTS.The TRICK is finding something to help. You can search this site for info on the hyperadrenergic version, and the info might help you. Beta blockers are a first try drug, and the latest info I've heard here is that Dr. Grubb no longer encourages salt loading for us hyperadrenergics.Personally, I think this form of POTS may be a better form to have, because your blood vessels are still working, they're just not working CORRECTLY! If we can just get our thermostat fixed, we should work (verses others whose vessels won't work even if the thermostat is fixed!). May be just optimistic thinking...I've found that my BP/tachy is improving somewhat with time. How long have you been sick? It's been almost 2 years for me...Good luck,Diana Quote Link to comment Share on other sites More sharing options...
Sunfish Posted March 13, 2006 Report Share Posted March 13, 2006 jclair - first i just want to add my hello/welcome. i'm sorry that you have reason to be here but am glad you (or your sister rather ) found the site.in regard to ideas, other than reading up on the site and possibly taking some of the info to your local PCP, the fact that you have an appt. set up with dr. grubb in sept. is a step in the right direction. i know it seems like forever away but it will be here before you know it. and in the meantime you can always call them to see if there are cancellations along the way.i do see a doc at CC in correlation with dr. g but it's not who does the usual intake/testing. my doc is a neuro (rather than a cardio) and works more with neuropathies & autonomic failure. generally the CC has a reputation for good testing but not so much follow-up. there is another doc at university hospitals in cleveland who i have heard good things about but the wait for him is just about as long as dr. g. hang in there, melissa Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted March 13, 2006 Report Share Posted March 13, 2006 It's not that unusual to have POTS and hypertension on standing as well as increased heart rate. I also have that problem. Although I can also have dips in bp on standing.Katherine Quote Link to comment Share on other sites More sharing options...
jclair Posted March 13, 2006 Author Report Share Posted March 13, 2006 thanks to all of you for replying to me. I have had this for almost 4 years now, and will definately look up hyperadrenergic.. I can't believe there are other people out there with the same illness as me. I had given up on that. My cardiologist has done so much research. I was wondering about the increase salt. As far as it getting better over time it hasn't. I am still hospitalized. Sometimes I can just go to the er and get fluids and that helps. But.. I am a bad stick, no veins, and wanted to consider having a mediport put in just for this.. Please keep responding, I feel like the first time in my life there is hope.. Quote Link to comment Share on other sites More sharing options...
Lukkychrm42 Posted March 13, 2006 Report Share Posted March 13, 2006 Hi- yup there are a bunch of us whose BP goes up when we stand, though that will throw off some doctors who think that POTS means your BP should go down, when really all it means is that your HR goes up. Mine even went down in my TTT, but it usually goes up, sometimes to normal, sometimes to pretty high. I don't know if it's only in hyperadrenergic POTS (whether primary or secondary, depending on the doctor)... I doubt it, though. I know quite a few POTS patients who have some sort of long-term access to veins.. I haven't tried regular fluids, myself, as I haven't had access, but I have bad veins, too, so it's a possibility. I'm glad they help you.In my experience, the thing that has helped the most is to get on the web and do as much research as you can and find out everything you can. Someone posted here about a paper that Dr. Blair Grubb wrote and published recently that would be a very good resource to give to your doctor, available on medscape I think?? Quote Link to comment Share on other sites More sharing options...
futurehope Posted March 13, 2006 Report Share Posted March 13, 2006 Diana,I've been diagnosed for almost 4 years. On the surface, from taking heartrate upon sitting/standing, it would appear that I've improved somewhat.But, as far as I'm concerned, looks are deceiving as I feel really poorly on sitting or standing regardless of how the heartrate and blood pressure are doing, so, obviously, something is wrong. Not to mention I have no stamina and fatigue is a constant companion.My gut tells me that the thread on deficiency of norepinephrine reuptake is the most promising avenue of research. Ramakentesh posted the latest on this from a doctor doing research in Australia.So what I suspect is that I have "too much" norepinephrine in my blood because the "reuptake" is faulty. It is my understanding that NE dialates blood vessels (among other things). The blood vessel dialation causes the blood to pool lower down and not get up to the brain area. Our bodies compensate by making us "hyperadrenergic".That's my take on it. All they have to figure out is how to get our norepinephrine to be cleared from our bloodstream like it's supposed to be.I don't know if what I'm saying is correct. It just seems correct to me. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted March 13, 2006 Report Share Posted March 13, 2006 Just b/c bp goes up when standing does not mean you are hyperadrenergic. This is a fairly rare form of POTS. Regardless, treatments for primary POTS, whether hyper or partial dysautomic, are similar--many of us have not been tested to determine which kind we have.I find that salt and fluids lower my standing bp/keep it steady at a normal level--I have no idea why!A low dose SSRI is what has helped me recover the most.Katherine Quote Link to comment Share on other sites More sharing options...
kmpower Posted March 13, 2006 Report Share Posted March 13, 2006 My BP used to go really high (with tachy) when standing. All my first episodes were like that. Finally, I got put on a BB so both have come down. Then I got lightheaded all the time (see the other thread), but the ER and BP didn't go so high. In fact, the BP now gets low when I stand (except, Murphy's Law, at a doctor's office).The thing is that my head symptoms are the same as when it was very high -- ringing in my ears, lightheadedness, pressure, things seeming far away, my voice weird to me and echo-y. What has changed is the heart episodes are less severe.I read that if your BP is too high, the cerebral vessels vasoconstrict (because all the blood vessels are probably vasoconstricting). But if your BP it too low, the cerebral vessels can still vasoconstrict even if the other vessels are dilated. It is as if the brain is trying to hold the blood in, or keep it at a certain pressure.For me, I am trying to research which things I can do which will increase blood in the cerebrum and not rely just on BP numbers to tell me. After all, they take BP in the arm but not in the brain, right? (Actually there are cerebral pressure tests and I am going to try to get one with my TTT.)Anyway, symptoms and numbers don't always match from my experience and research.OLL Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted March 14, 2006 Report Share Posted March 14, 2006 I have both high and low blood pressure-- the best way to describe it is dysregulation of blood pressure and heart rate.Nina Quote Link to comment Share on other sites More sharing options...
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