High Blood Pressure, Not Sure What To Do

[janiedelite]

Hi everyone! I'm new to this forum, and would really appreciate any input you have. I was diagnosed with POTS/general dysautonomia this summer although I've had mild symptoms all my life. Because the fatigue, pain, BP problems have worsened so steadily and drastically over the past year, now my docs are suspecting that the POTS might be secondary to another "unknown" illness. I have an appt at Mayo Rochester at the autonomic clinic in 3 1/2 weeks.

I've been having chest pain since this summer and have had EKG's, chest xrays, even wore a Holter monitor for a month a couple years ago for episodic tachycardia and chest pain, and no heart problems were seen. I've also noticed over the last couple years that my BP would easily jump up if I was stressed in any way.

For the past month, my BP's laying down first thing in the morning are normal (120's/60's, pulse 50's). Then as soon as I do any activity, EVEN TALKING, it jumps up. This morning my first standing BP was 156/94 pulse 84. Last night my mom came over for a visit and after talking with her for 1/2 hour I noticed increasing chest pressure, pain, and tightness so that I was gasping for air. My BP was 170/100 standing, 168/96 laying down. 2 hours later it was 168/86 laying down and my chest was still painful.

It seems to me like my sympathetic nervous system is constantly on hyperdrive! The only thing that brings it down somewhat is wearing compression hose (even at night), laying down constantly, not even answering the phone. And even then it takes hours or days to bring the BP back down.

I called my primary care doc a couple weeks ago and she wanted to put me on a beta blocker but wanted me to talk with my EP cardiologist first

(who originally diagnosed my POTS). The cardiologist hasn't returned my call in over a week. Should I keep bugging him for some help? I'm concerned because it's still several weeks til I get to Mayo and my BP keeps rising. I have to fly for 4-5 hours to get to Rochester too, and am concerned about flying safely if I can't lay down for several hours.

Maybe I'm just making a mountain out of a molehill, though, and this is just another crazy POTS symptom and should I just keep taking pain meds to make the chest pain bearable and do what I have to do???

I've read that some of you guys have high BP also and how do you treat it? When do you treat it?

Thanks so much for any help! Janie

[firewatcher]

Janie,

have you lost a lot of weight recently? You may be hypovolemic. My BP rises like that if I am low on fluids or in pain. Try drinking more and see if it helps?

Jennifer

[carinara]

Hello Janie,

welcome on the Dinet Forum.

Hope this post will help you:

http://dinet.ipbhost.com/index.php?showtop...amp;hl=carinara

all the best, carinara

[janiedelite]

Thank you, Firewatcher and Carinara! Firewatcher, I do believe that blood volume plays a part. I used to just be able to salt load and drink this summer and keep the high BP, chest pain and pressure at ease. Then I began taking florinef and I felt even better. But then it seemed to "wear off" and the symptoms returned. So we increased the florinef and I began wearing compression hose. I felt really good for about a month and then it seemed to wear off again, and the high blood pressure, etc. came back. I wear the compression hose night and day now. My chest still hurts all the time, but when I take the hose off it feels like a stabbing pain and I can't even stand up straight. BP also spikes. So, yes, I definitely believe hypovolemia is triggering these adrenal responses. The problem is that the hypovolemia keeps getting worse no matter what interventions I take. I can't even get up to use the bathroom without my diastolic and systolic BP each going up 30 points. The longer I'm upright, the higher it goes! Even talking makes it go up now and I feel that stabbing chest pain.

I haven't lost weight, although I believe that I consume way more than normal amount of calories considering that I'm practically bedridden and can't exercise at all. My weight has stayed the same for 2 years.

Carinara, thank you for directing me to the other postings! I really enjoyed reading your post about your experience in the hospital. I totally understand that everyone's BP fluctuates regularly and I'm not terribly worried about stroke or heart disease yet because my BP does normalize overnight. It's just that it takes so little stimuli to cause my BP and chest pain to spike (like I wrote above, just talking or walking 10 feet to the bathroom) and it keeps rising until I lay down and then it takes at least an hour to return to normal range.

I'm not even sure what meds I could be put on because my BP is low-normal when I've rested awhile. And I have this worsening headache and nausea after my BP shoots up that advil doesn't help very much. I just feel so miserable. I'm trying to just wait it out, though, til I go to Mayo because they'll want me off my meds anyway for the autonomic testing. I guess if I start having really scary symptoms I can go to the ER for short-term treatment.

[firewatcher]

If your weight had dropped, I'd think that you were hypovolemic...no clue. Sorry.

As to the flight, try to find out the least crowded flight you can on the biggest plane, get a wheelchair at the airport, and once onboard try to find a complete row to yourself if you can. Put up all the armrests and lie down across the seats. If the flight has room, the flight attendants shouldn't freak out about it. If you can, upgrade to first class, those seats recline fairly well.

Hang in there and keep us posted.

BTW, my BP goes to 173/149 if I put my arms above my head but goes to 96/83 if I just stand still.

[janiedelite]

Wow! That's a crazy blood pressure! I'll take your advice regarding the flight. We already have a wheelchair requested at least!

I stood and checked my BP with my arms raised and it was 112/71 (pulse 95)! I put them down and it was 138/97. Crazy! But I actually had some relief from the chest pain and tightness with my arms elevated. Thanks.

Thanks again, Janie

[mkoven]

I've also had atypical chest pain with ans symptoms that no one has been able to make sense of, after a very extensive cardiac workup. I hope Mayo can help figure out what's happening. I think I remember reading about someone else here who had high bp spikes with her dysautonomia and got help at Vanderbilt. I only occasionally spike high, after I've been low. But I know how frustrating and scary it can all be.

[mkoven]

Another thought-- can you get stronger stockings/more compression, since that helps you? I now use a pair of 40-50 mmhg stockings on bad days, and it really helps--significantly more than 30-40.

[firewatcher]

Wow! That's a crazy blood pressure! I'll take your advice regarding the flight. We already have a wheelchair requested at least!

I stood and checked my BP with my arms raised and it was 112/71 (pulse 95)! I put them down and it was 138/97. Crazy! But I actually had some relief from the chest pain and tightness with my arms elevated. Thanks.

Thanks again, Janie

Janie,

Nope, NOT crazy...if the cuff was on the raised arm, all the blood was leaving it and the pressure in that arm was lower. I took mine with one arm in the air and the one with the cuff was at my side. I think my BP spiked because my body was desperately constricting, trying to pump blood up higher to meet the postural demand. (I get super dizzy if I raise my arms above my head.) Don't worry too much about the BP readings, they are not going to be normal, just make sure you stay hydrated!

[MomtoGiuliana]

Hope you get the answers you need soon. It's frustrating when doctors don't return calls.

My only advice would be not to get too focused on regular bp readings. Home bp machines can be inaccurate. It is normal for bp to fluctuate--with POTS though it can fluctuate a lot more than is normal. I agree with what others have said that increasing fluids could help. It helps normalize my high-side bp.

There are also breathing exercises that can help to some degree with bp and tachycardia. Meditation can be helpful--not just with bp but also with coping with the waiting period and the general trauma of being chronically unwell. Spontaneous Healing by Dr. Weil includes some of these techniques which helped me when I was very unwell.

[juliegee]

Hi Janie,

Scary. I'm glad you're getting to Mayo for some help. I have a few questions/thoughts. You aren't still on florinef, are you? It can really raise BP. Your symptoms sound like hyperadrenegic POTS, where your BP rises as well as HR when standing. This form of POTS has also been linked to mast cell issues, which might explain the chest tightness and trouble breathing. Do you have other allergy-type symptoms, anny skin flushing, or hives?

I hope you find answers soon.

All the best-

Julie

[ramakentesh]

After i was symptomatic I went for a few years with my blood pressure sitting at around 140/70 to 160/90 when I stood and then dropping back to 120/70 when sitting. During these periods I was less symptomatic and it didnt worry my specialist so it was left.

Now that Im not feeling as well my blood pressure on standing is the same as my sitting.

I gues you could say that I have the hyperadrenergic type of POTS although my doctor says its more 'faulty reuptale of NE rather than a truly hypernorepinephric state'

[pat57]

florinef raised my Bp, way too much. Could it be that? I suggest you ask your PCP tp call the EP.

good luck!

just saw macks mom's post.

[janiedelite]

Wow! Thanks, guys, for your advice. I would be concerned about the florinef, except that if I had too much volume my BP laying down would be high. It's usually normal, and sometimes even on the lower side.

MomtoGuilana, I agree that BP's aren't always accurate. I usually take my BP when I notice more chest pain and difficulty breathing, which has worsened lately. It's usually been high when I've been upright. My BP sitting at a dr's office last week was 168/88. When I try to slow my adrenaline by breathing deeper, just the excess work of the abdominals to take deep breaths makes the "adrenaline" feeling worse, raising my BP.

Mack's Mom, I have been seriously researching the role of histamine in my symptoms. I do get flushing episodes, accompanied by more pooling, tachycardia, worsening burning skin and mouth, nausea, diarrhea, etc. My whole body turns pink sometimes. I've started taking zyrtec and zantac daily which helps the indigestion/heartburn, pink face, but I'm still easily set off by stress or exercise. I do take a benadryl right after I notice an episode coming on and it helps with the burning skin and mouth (I have read that excess histamine can cause burning skin and a painful mouth, as well as pooling, diarrhea, etc.). But my BP still shoots up and I still feel wiped out. My mom came down with carcinoid syndrome when she was my age, and my brother recently had a neurofibroma removed, so I really think there is a genetic component in my dysautonomia.

Ramakentesh, I've been wondering if I have the hyperadrenergic type of POTS. When I mention my rising BP to my docs, they first don't believe me til they see the readings in their office, then they don't know what to do.

I should have mentioned earlier that my pooling has been progressively worsening also. In June, it was only in my feet. In July, you could see mottling up my calves. In September, pooling was visible up to my groin and in my hands. In November, my arms would be mottled pink-purple up to my shoulders whenever they were dependent. Now, I can see and feel the pooling however I'm positioned (if I'm laying on my right side, my right flank will be pink and hot and mottled). So, in my case I am hypovolemic, even though I do have the actual blood volume. I think raising my arms returned some of the blood to my core which is why my chest pain eased for a bit. I tried midodrine but it made my feet dusky and cold on 2.5mg tid, like when I get the chilblains. Has anyone else had this kind of progression in their venous pooling??? I told my primary care doc, who is the only one who hasn't thrown in the towel, that I feel like I've turned into the human blob!

Thanks Pat, that's a great idea about having my PCP contact the cardiologist.

Today's standing BPs: 134/92, after 1 minute 140/102, 2 minutes 150/104, 3 minutes 160/106. Then laying down 163/93, after 1 minute 153/86, and will be normal in an hour or so as long as I don't move, talk, hear the phone ring...

[MomtoGiuliana]

Your situation sounds complicated and I don?t really have any other advice but just wanted to mention that the breathing exercises I am referring to go beyond deep breathing. One simple thing to do is when lying down, lay your arms back, over your head (unless this causes other problems). This forces your chest muscles to relax and at least according to a biofeedback specialist I saw when my problems were more serious, reduces adrenaline output. Weil?s breathing exercises for relaxation of the autonomic nervous system involve a variety of techniques.

[yogini]

Florinef increases both blood volume and BP. If you're taking florinef and your BP is that high, you may need to be on a lesser dose. A lot of us get high BP after being on florinef, so there is a good chance it is related. Check in with your doc or pharmacist.

[janiedelite]

Well, I will need to be off the florinef prior to my autonomic testing at Mayo, so I might as well try to wean off now. Thanks!

[juliegee]

Hi Thankful,

You must feel inundated with all of the help- we mean well Everyone's advice re. the florinef is right on the money. You've got some really high BP numbers and florinef is a huge "No-No" when your BP starts to creep up. My son's doctor at Hopkins says to drop back dramatically with high BP. My son and I both have with no problem when we experienced florinef-induced high BP. Others here have experienced problems when they reduced their florinef and have needed to do it more slowly. Your BP is high enough that you need to back off now. What dose are you taking? Many of us take 1/2 or 1/4 tablets.

Don't worry so much about your resting or lying BP. Low is OK. Mine is usually less than 90/60 and it rises up when I'm sitting or standing. Just because your BP is normal when you're lying down, doesn't mean that you're properly regulating your blood volume with the florinef. It should be normal-ish when you're sitting. BTW, an awful headache is another sign of high BP, often florinef induced. Be careful!!!

I'm glad you're checking into the mast cell/histamine angle. I know carcinoid syndrome is pretty rare. Wonder if it's hereditary? You've got many of the symptoms. Your symptoms also fit the profile for mast cell activation disorder MCAD perfectly. Search around the site to learn more about that. You sound just like me when my MCAD was out of control. I remember how scary and out of control that felt. My thoughts and prayers are with you. The H-1 and H-2 blockers are a great idea. Keep us posted on your progress.

Julie

[janiedelite]

Julie,

I love the help! Bring it on! This dysautonomia thing is SO crazy. It seems one day I have too little blood volume and then the next day I've got too much! This website has been such a blessing. Kind of my oasis in the desert, so to speak. It's so great to read your posts and realize that someone out there can relate, especially after seeing so many "specialists," hoping for answers, then only to spend the appointment trying to convince them my symptoms are real or explaining dysautonomia to them.

I think my husband is also glad that I've got an outlet, as he's been through the frustrations of this last year with me. He often asks if there are any interesting posts lately. He'll be taking me to Mayo and pushing me around.

I'm on 0.1mg florinef twice a day. I cut it in half today, and will try to go off in a week or so. I was on 0.05mg twice a day til November, then my symptoms worsened so we upped the dose to 0.1mg.

May 2009 bring everyone peace and joy! Janie

[juliegee]

I'm glad we're not scaring you off This site is an oasis for me, too. I first learned of mast cell issues here and was later DXed at Brigham and Women's in Boston. When all of this started in my family, our doctors were clueless too. DINET members are my lifeline. There is so much knowledge here. I'm so appreciative. Let us know how you do on the lower florinef.

Julie

[Shimoda]

Welcome to the site!

The best advice I can give you is that Florinef is poopy. It's not worth the money and it does harm a lot of peoples' BPs, while I've heard of no one who has been miraculously cured by the med. My advice is to talk to your doctor about a safer and better treatment.

[mkoven]

I think people react to different meds very differently. Florinef has brought me from bed and house bound to pretty functional. I'm not saying it's a wonder drug for all, but for many it is very helpful. It has its risks, but many drugs do. I have a hard time with many drugs, and it is one I have done well with. It may not be appropriate for some people, but that's true for most drugs. My first ans doctor considers it one of the safer drugs to try first.

[pat57]

Are you taking a Beta blocker? They turned my hands and wrists pink with white spots.Which you are possibly describing. I think I only took them one day, showed the Dr. and was off. I really don't think it is that but I would most certainly rule it out- if I was you.

good luck..........

[janiedelite]

Are you taking a Beta blocker? They turned my hands and wrists pink with white spots.Which you are possibly describing. I think I only took them one day, showed the Dr. and was off. I really don't think it is that but I would most certainly rule it out- if I was you.

good luck..........

Thanks Pat57, but I'm not on any beta blockers. I'm going to just keep resting and wean off the florinef. Although my hands and wrists are often mottled with white patches surrounded by pink or blue skin. They turn colors whenever they're below my heart. My husband and I sing the "Star Spangled Banner" when I get out of the bath because my calves are blue, ankles are pink, and toes are white!

I called the cardiologist's office again today with BP readings and florinef concerns. He left a message with his receptionist asking why I haven't gone to Mayo yet! I told her to let him know that my appt isn't for 3 weeks, that I need to be off the florinef by then, and that it would be nice to have his help dealing with the orthostatic hypertension if it hasn't resolved in 3 weeks so that I can travel safely. He's already admitted that he doesn't know what's really going on with my body, but he needs to know I need to get off this drug!

Although, I think I'm already noticing a little improvement since I'm on half the dose of florinef. Thanks guys.

[flop]

The skin discolouration and mottling you describe sound like acrocyanosis to me. (Here's a link to a picture).

There has been some debate about what causes acrocyanosis. Initially it was thought to be due to venous pooling. Now the thinking is that is may be a lack of fresh blood flow to the skin. That could be caused by severe pooling or by vasoconstriction (tightening of the blood vessels). Vasoconstriction can cause high BP.

Midodrin works by causing vasoconstriction, if you already have vasoconstriction then it would make sense that the midodrine didn't help / made things worse.

A separate issue - do Mayo know that you are taking florinef at the moment? Have they told you when they want you to stop taking it? It takes several weeks to get out of your system so I'd give them a call and ask about how/when to stop taking it.

Hope you get some answers soon!

Flop