Orthostatic Hypertension?

[lavender]

I'm so excited to have found this forum. I have so many questions! I think it'll help me to run some things by all of you.

I'm 25. I have been very sick with a illness that so far no one (I've seen sooo many doctors) has been able to figure out. I won't go into all the details in one post. It started gradually when I was a young girl. It didn't start to really "take over" my life til I was about 11 or 12. From 14, on, I was not longer able to go to school. From reading your posts....you all know the story!

I've always noticed that when I am on my feet my heart really pounds and I have an overwhelming feeling I NEED to sit down. It gets alot worse the more sick I feel. because of all my other symptoms, I've never really singled this out and looked into it. I recently got a blood pressure monitor and started watching what my heart rate and BP are doing.

I've found that they are all over the board. Laying down my BP has been between 90/55 to around 112/85, heart rate between 60 and 80. When I am standing i'm noticing my heart rate goes from about 115 to 146. Some times it'll shoot from 80 to 140 the second I stand up, other times it'll climb more gradually, but the longer I stand the higher it gets. I expected that because I feel my heartrate go up and because I feel so gross when I am up, that my bp is dropping. I'm finding though that most of the time it streadily raises along with my heartrate....to say 120 to 140 over 80 to 100.

So my question is, does this sound abnormal and worth looking into more? Do any of you have a postural raise in blood pressure? I've never considered the idea of something autonomic causing my illness, but in watching my readings lately and reading about autonomic symptoms, I'm beginning to wonder...........

wow the idea that I may actually get to the bottom of all this is hard to believe!

thanks for any input!

[taylortotmom]

Welcome to the forum. Based on your readings, you very well could have a type of dysautonomia. Some folks do have an increase in BP upon standing. Have you had a tilt table test? This is the standard test for measuring pulse and blood pressure while lying and standing.

Carmen

[mom4cem]

Hi Lavander,

Welcome. Sorry to hear you have been dealing with this alone for so many years. There are so many varying symptoms from one person to the next with dysautonomia that nothing seems to far fetched. It certainly sounds like it is autonomic related. The autonomic system affects so many things within our bodies, gut, heart, b/p etc.

My b/p does not always go down, many times it is normal or goes up quite a bit too when I stand. My heartrate always goes up quite a bit, not so bad anymore while on a beta blocker but first thing in the a.m. b/4 I take a pill, when I stand it pounds away,,probably at 120-130. Sitting I can vary from low to above normal.

What have the Dr's been telling you? Are you taking anything at all?

I'm glad you found this site. Armed with knowledge you can now hunt down a dr. who, if he does not really understand autonomic problems, is at least willing to learn while helping you.

Welcome again.

[Rachel]

Lavender,

Welcome to the forum! I'm glad you found us!

Your story sounds like many of our stories! I'm so sorry you haven't been able to find a doctor who can help you. Have you ever been to an electrophysiologist or a neurologist? If not, it would be worth checking into. And definitely see if you can get a tilt table test done.

Have any doctors made comments on your pulse and blood pressure before? Or did you just recently discover on your own that your pulse and bp aren't normal?

I hope that you can find some answers here. Feel free to ask questions! I'm always amazed by the kind and intelligent people I find here.

Let us know when a doctor finally figures out what's going on!

Rachel

[futurehope]

Welcome to this forum. My heartrate and my blood pressure both tend to go up with sitting or standing.

In my case, I've already had a tilt table test during which blood was drawn to measure catecholamines (epinephrine and norepinephrine). My NE goes above 600 when vertical which some specialists describe as "hyperadrenergic" type POTS. In this form both blood pressure and heartrate can increase.

There are also many other symptoms that can be associated with dysautonomia. Have you read the some other info on the DINET website?

[morgan617]

I also have a hyperandrenergic type of pots, so my bp and pulse increase when standing or sitting.

I get big dips at night. It is certainly worth checking out.....welcome to the board and I hope you find some answers.....this is a perplexing illness to even the specialists, so the road may be fraught with frustration, but you will get plenty of support here! morgan

[lavender]

thank you for your replys!

I did actually do a TTT about 10 years ago. We wondered by my symptoms if I had neurally mediated hypotension. It didn't go very well. The guy who did the test asked me if I have a problem with fainting. I don't. And I didn't pass out durring the test. The test just made me so so so tired. For some reason the guy running the test was really rude throughout the test and made it clear to me that he didn't think I needed it. I'm not sure if the test actually showed anything helpful. I was crying and just wanted to leave. We did rule out NMH at that point though.

I get really stressed durring appointments.....I think from fighting doctors for so long, trying to get help. some of them can be so hurtful when they cant figure out what is wrong. (I've seen some kinds doctors as well!) so because of this and because the guy running the test was making me upset, my heart was racing. I'm not sure if they would have seen a change in my heartrate and blood pressure because they are high durring appointments anyway! Is that a possibility?

I am just working with my GP doctor at this point. He's nice to me, but at a total loss as to what to do. and not very proactive at this point. We're looking for someone more specalized. I'm not sure though even what kind of specialist to see. I've worked with rheumitologists in the passed. I did see a neurologist one time. But I was only at the hospital for a few days, I was out of State (I live in alaska). He was puzzled. I didn't have long enough with him to get anywhere. What is an electrophysiologist?

Last time I was in to see my GP I showed him my numbers from my own at home "TTT." He was very interested. With my fatigue, weakness, chills, gasto problems, exercise intolerence, brain fog and circulation issues, we both started wondering if we need to be looking into something autonomic. He gave me a beta blocker to try. Propranolol.

I'm concerned to try it though. I have alot of trouble with the circulation in my hands and feet. Most of the time the vessels in them constrict (we are thinking) too much. They are really purple, get really inflammed, and sometimes get ulcers. So I'm worried a beta blocker will make that worse. They keep giving my different kinds of vasodialators to try and improve this problem. The problem is meds that dailate my blood vessels make all my other symptoms SO much worse! I get SO tired and weak that I can't be up at all. I just feel like a jelly fish! If I sit up or stand up my heart pounds so hard and fast and I get so much pressure in my legs and feel like I'm going to puke. This happens without any vasodilators also. Because all the vasodilators seem to worsen my symptoms, I began to wonder if my illness has more to do with the way my circulatory system is working than I realize. I've been reading all I can about different kinds of dysautonomia. I'm trying to decide if it sounds enough like me to pressure my doctor to look into further. I'm a bit afraid of yet another bunny trail! That's why it helps so much to talk to you while I read and think.

Sorry this is quite long!

[bttrflyamby1981]

I'm sorry Lavender, that you have been dealing with these symptoms all alone without any understanding as to what was going on. That isn't a easy task. I hope you find a Dr soon that can help give you a diagnoses.

Welcome and best wishes.

[goldicedance]

What a shame that you have had to deal with your illness so long.

Propanol (a beta blocker) is often one of the first steps in trying to find a treatment for your symptoms.

If your doctor recommends it, I would certainly try it. You need to be proactive and open to different treatments if you want to see some light at the end of the tunnel. Unfortunately it may take many attempts to find the right medication(s) at the right dose(s).

You and your doctor might find the below referenced link (an article by Dr. Grubb) that describes various types of POTS and gives a very concise guide to different treatment modalities.

http://www.medscape.com/viewarticle/522421

I know this is hard but you must be motivated in finding some relief for your debilitating symptoms. I am sure glad that you found our wonderful group.

We are there for you!

Feel better,

Lois

[Ernie]

Hi Lavenden,

I would ask to have another TTT and have my catecholamines measured if possible if not a TTT at least.

Many things can change in 10 years.

Welcome aboard.

[Rachel]

Lavender,

You live in Alaska?!!! I wish I had met you a few years ago! I used to live in Alaska. I just moved from Alaska to Georgia in October.

An electrophysiologist is a cardiologist who is trained to diagnose and treat heart rythm disorders. There are one or two at The Heart Institute in Anchorage. Here is a link to their webpage with the physicians list:

http://www.alaskaheart.com/pcsites/physicianList.cfm

A new ttt would probably be a good idea. Like Ernie said, a lot can change in 10 years. I'm sorry the guy running the test was so inconsiderate. Sometimes medical people forget that patients are real people, not medical objects, and that we have feelings too.

Being nervous and stressed can make pulse and bp readings different. Also, sometimes doctors will say that your pulse and bp readings are high only because you are nervous. And they just ignore the abnormal rates. I had been going to doctors for a year before a nurse finally commented, "You're pulse is a little fast." That's what finally got us on the right track.

I would definitely keep looking into dysautonomia. Unfortunately, you might have to go to the lower 48 for a good doctor for dysautonomia. Doctors in Alaska just don't have much experience with it. For example when I went to my neurologist in AK (she only had 1 or 2 other POTS patients) she would ask me, "What do you want to do next?" And I'd come prepared with a list of symptoms, a stack of research, and a list of meds or tests I wanted to try.

I'm so bummed that I didn't know you when I lived in Alaska! If you have any questions about doctors in Alaska that I've been to or heard about feel free to send me a pm. I'll help in any way I can.

Rachel

P.S. Enjoy the winter for me! I miss it already!

[Rachel]

Lavender,

You live in Alaska?!!! I wish I had met you a few years ago! I used to live in Alaska. I just moved from Alaska to Georgia in October.

An electrophysiologist is a cardiologist who is trained to diagnose and treat heart rythm disorders. There are one or two at The Heart Institute in Anchorage. Here is a link to their webpage with the physicians list:

http://www.alaskaheart.com/pcsites/physicianList.cfm

A new ttt would probably be a good idea. Like Ernie said, a lot can change in 10 years. I'm sorry the guy running the test was so inconsiderate. Sometimes medical people forget that patients are real people, not medical objects, and that we have feelings too.

Being nervous and stressed can make pulse and bp readings different. Also, sometimes doctors will say that your pulse and bp readings are high only because you are nervous. And they just ignore the abnormal rates. I had been going to doctors for a year before a nurse finally commented, "You're pulse is a little fast." That's what finally got us on the right track.

I would definitely keep looking into dysautonomia. Unfortunately, you might have to go to the lower 48 for a good doctor for dysautonomia. Doctors in Alaska just don't have much experience with it. For example when I went to my neurologist in AK (she only had 1 or 2 other POTS patients) she would ask me, "What do you want to do next?" And I'd come prepared with a list of symptoms, a stack of research, and a list of meds or tests I wanted to try.

I'm so bummed that I didn't know you when I lived in Alaska! If you have any questions about doctors in Alaska that I've been to or heard about feel free to send me a pm. I'll help in any way I can.

Rachel

P.S. Enjoy the winter for me! I miss it already!

[kmpower]

Welcome to the forum, Lavender. When standing is intolerable, sometimes countermaneuvers or compression stockings help you stand longer.

I hope you get some answers.

OLL

[lavender]

Thank you everyone! Yes I should do another TTT. But ugh I dont want to! I'll talk to my doctor about it. Rachel did you do a TTT while here in Alaska? Can I ask where you had it done? I can relate to what you said about the Neurologist. My doctor always asks me "so what are you thinking? What do you want to do?" I appreciate that he listens to my opinions but he's the doctor, I wish he was more proactive. He always tells me someday I'll wake up and all of this will be gone. I think that's his hope because he doesn't know what to do! I'm not interested in just sitting and waiting it out!

Thanks for all the help and for Grubbs weblink. I'll go read it.

[Rachel]

Lavender,

I did my ttt when I lived in Virginia. I have a friend who recently had a ttt in Anchorage and it was a terrible experience for her. They left her strapped to the table for 2 hours while they were waiting for the doctor to show up. I don't know which hospital she went to for the test, though. Maybe that was the same place you had yours done where the guy was so inconsiderate.

This fall I had some blood work and an MRI done at Providence Hospital and the Providence Imaging Center. Everyone was WONDERFUL and so kind. I don't know if that is indicative of the rest of the hospital, though.

Rachel

P.S. Do you recognize my avatar? It's a picture of the Kenai River taken from the deck of Princess Lodge in Cooper Landing!

[JAQUIROUIN]

HI

WHEN I READ YOU STORY , I REMEMBERED MY STORY.

YOU NEED, MAYBE A NEW TILT TEST, BECAUSE SOME PEOPLE WITH DYSAUTONOMI, THEY CAN HAVE TWO KINDS OF THIS.

WHEN I ARRIVED TO THIS GROUP, I FEEL BETTER WITH MY OWN PERSON. CONGRATULATIONS FOR YOUR CHOICE. ITS A GREAT FORUM.