Blood Pressure/heart Rate Issues

[comfortzone]

Hi everyone .... This is only my second post ~ I was dx'd with EDS-HM or Hypermobility Syndrome after a couple of back to back joint replacements. I never regained my strength ~ and this was a year and a half ago. I can get about 3-4 hours of relatively normal activity at a time ~ and then absolutely have to lie horizontal for at least 1 to 2 hours ~ more times than not 3 or 4 hours to be able to 'recharge' for a bit more light activity.

After that I can resume a quiet evening at home. I recently took a job that is for 4 hours per shift ~ around 3 hours I have to tell my boss I need to sit down for a bit. A couple times I got dizzy. Went to my cardiologist because I saw my pulse for about a year now always tachy --- about 100. Blood pressure went from controlled on a lower dose of med ~ to uncontrolled and 4 times the dose of medication since this past January. It varies from low 80's/50's to high 150/115. All in a given day. My primary had me see the cardiology guy. My b/p would be either very high or relatively low when I'd get dizzy ~ say at physical therapy doing my routine.

Just yesterday found that if I take my b/p lying still in bed upon awakening it is 100/60 --- but when I stand up for a minute or so it is 143/110. I have repeated this test 3 times now and if I rest lying down B/P gets normal ~ if I do light housework it's high again ~ just going from lying to standing it's high. So the only time it's reasonable is when I'm flat on my back ~ which correlates with how I feel ~ needing to chill and rest. One minute on my feet it's really elevated again.

My cardiologist did an echo ~ normal. He did a holter that showed runs of atrial tachycardia and PAC's and PVC's were occasional and my avg. heart rate is 100. He put me on metoprolol a beta blocker ~ It has made the morning pulse in the 70's ~ but any activity has it in the mid to hi 90's ~ which is better than a hundred I suppose.

So I have what looks like postural hypertension ~ by my best guess ~ And I'm now nervous because that makes you at risk for stroke and I don't want that.....I guess hypertensive people that have orthostatic htn ~ get strokes much more often. I'm early 50's in age.

I wonder if anyone else here experiences a similar pattern of energy/lack of energy in a day ~ And if they too have a need to lay down to recuperate after activity. Also if anyone has checked their vitals or b/p and pulse to see if their's too is normal laying down but high when being active doing normal activities. Or normal in the morning waking ~ only to have it shoot up from merely standing......

I left a msg. for my cardiologist and the asst. called saying he'd call back but he hasn't or I missed the call somehow on my cell phone today and it's nearing the weekend. So I guess I'll try again tomorrow or on Monday ~ I think doc's don't really relish more unusual cases and I think after the last 2 years I'm definitely in that category!

I see neurology on this Wednesday to give an update ~ I wonder if my poor recovery or exercise intolerance has been a cardiac/neuro POTS-type of thing all along --- I did read up to 3/4's of hypermobility syndrome people do have this...

Does this sound familiar to anyone? Thanks!

[Noreen]

It all sounds normal for this group.

Kudos for figuring out the BP thing on your own. Hopefully your cardio will order a tilt table test to complete your diagnostic work-up.

I, too, had a long period of recovery from surgery. Whether it is the hypermobility causing the dysautonomia and then any deconditioning making everything worse = it is all not fun.

Welcome to the group. At least you found a place where you;ll be understood.

[HopefulLady]

Hi I have the same problem! My BP goes up when I am on my feet or doing any sort of activity. Laying down and rested it's normal. I just took a tilt table test a few days ago. And my BP spikes were completely abnormal they were so high I didn't even know my BP was that high while I was on my feet. Apparently the longer I am on my feet they higher my BP goes and the higher my heart rate goes. Laying down for awhile will bring it back down to normal. It's normal for me to take several brakes while doing house work or normal activities because of tachycardia. I was told I have POTS and the doctors are going to start me on a beta blocker to try and control my BP and heart rate swings. I also take effexor xr for my dizzy spells. I wake up with a heart rate of about 60-70. But the moment I sit it's in the 80's 90's.. Standing it's in the low hundreds the longer I am up or an sort of activity it just keeps going higher and higher. Just to clean the house I am in the 150's. And I am not doing anything strenuous that would cause my heart rate to be so high. I feel better when I am laying flat down on my back and my heart rate will drop back down 30-40 points as soon as I am laying back down. They only was I was able to figure this all out was getting a sports watch to track it number's wise. I just picked up a blood pressure monitor as well to start keeping a log of my BP. I have had stress tests, always normal. echocardiograms normal, and numerous EKG'S always sinus tachycardia but normal rhythm. Not to mention the numerous blood tests , urine tests, as well as xray's/CT's. Which have always come back normal. My EP doc got to see how whacky my vitals were when they did my Tilt Table Test. The was how I got diagnosed with POTS. If you haven't had one you should def get one done if possible. Also I had a 24 hour holter that was normal. But I went back for a 30 day event monitor just to be sure I don't have any underlying arrythmia in the mix of this all. Since arrythmia's don't always show up on a 24 hour holter best to do the 30 event monitor. It's taken me 10 long years to give my illness a name. Sometimes it takes awhile just keep on top of your doctors and if you know something is wrong don't let them tell you otherwise!

[comfortzone]

Thank you Reen ~ and thanks HopefulLady too for sharing a bit......... HopefulLady our symptoms sound very similar ~ I had mentioned POTS to my cardiologist on my first visit ~ but I probably should have waited ~ you cannot overwhelm these docs on a first meet visit ~ He was thankfully trying to wrap his head around an EDS-HM diagnosis. Then after the holter he said in follow up to try the beta blocker and that I have postural tachycardia or vaso-vagal symptoms likely from venous pooling that is common with hypermobility people.

Now I need for him to take me seriously about this orthostatic change to increased b/p with standing/activity. Maybe the neruo doc will order the tilt test? I don't really know if they do those here or if I'd have to drive 3-4 hours to get to a place to have a tertiary care center/university center to do it. I'll try leaving the cardiologist another brief message & hope I can take the call. I do need to work today for a couple of hours. But yes again this a.m. my numbers were more in the normal range ~ but the orthostatic change is over 20 diastolic and systolic both ~ 110/71 and 77 to 131/97 and 91 merely standing up ~ I suspect this may be why all the fatigue after just 4 hours activity in a day.

Reen ~ Truly it was the awkward late or delayed recovery that then had me pop up with new symptoms of pain ~ sort of body wide ~ not caused from surgery directly that had me seek out answers ~ after a year I got the HMS by a smart cookie of a rheumatologist ~ I think being on the walker for 8 mos. had my arms rebel because of the unknown laxity of tissues. Then it's just learning all I can and finally now piecing together the fatigue part of this through what sounds like autonomic nervous system issues -- well at least some of it maybe.

I've like probably many of you have endured the rude doctors, the "counseling can help fatigue", it's all in your head.... etc. etc. Once I put all the pieces together ~ (hopefully getting further diagnosis about cardio-neuro things soon) I am going to delight in writing one of these doctors of the true diagnosis or diagnoses and suggest he think again before labeling someone upon first meeting (& only meeting) with a psychological issue when he can't come up with anything that matches his area of expertise. I should be over it ~ but to read his report still makes me go GRRRRRRRRRRR LOL! They made this particular doc the HEAD of a very important department at a huge famous university ~ I've been a nurse for 25 years and when I met the guy he reeked of arrogance ~ so I wasn't surprised by the report. But someone above him or around him needs to know that his response to not knowing the answer was not the wisest thing a doc has ever done ~ in fact it could really harm someone and delay true diagnosis for someone in need of some light and understanding. Yep that will be a fine letter indeed! Okay so I'm a bit cranky this morning :-)

Off to work ~ thanks so much for writing me back......and sharing your experiences.

[issie]

I too have EDS and POTS. The symptoms are the same as yours. One thing that I've found to be really helpful is full body compression. Also keeping my salt up and hydration. I've recently started using Licorice Root instead of Florinef. It is helping me to hold on to my fluids better.

I had the same type of doctor, with the arrogance and opinions. There is a site on the internet that you can rate a doctor and put your experience in there to warn others about them. Even though I wrote a letter to this doctor and told the "CORRECT" diagnosis. She didn't believe it and stuck to her ignorant arrogance. Some will not be proven wrong. It damages there reputation of grandur. Good Luck!!!! You've got it figured out now. Your on the road with the rest of us. We're all trying to get answers together.

[comfortzone]

Hi Again ~ & sorry you had to deal with insensitive arrogant pride in the healthcare system.......it seems it goes along almost as a matter of course that the people that need the most TLC and understanding for the rarity of their symptom group ~ by puzzling the docs and stumping them surely get the rudest behaviour and attitudes.....

Like an acute surgical abdomen that they can shoot their mouth off about to their colleagues is "exciting" where you are not important and a pain in their psyche or rear end (one in the same perhaps? lol)...... Truth be told an acute abdomen is a bore to everyone but the patient ~ where odd medical cases that actually cause you to use your brain and think outside of the auto-pilot of your basic differential diagnosis for common maladies......are actually the most exciting because everyone has an opportunity to learn and grow. Rarely is it seen this way :-(

Okay so I went to my cardiologist today to say the metoprolol (beta blocker) has my heart rate btw. 94 and 100 ~ not much different than before but it's actually tolerable. So my avg. rate may be 10 beats less. I told him my blood pressure is higher -- and has a pattern of increased movement and activity with changing of position raising it yet higher. So the med asst. did a lying down - sitting - and standing set of orthostatic vital signs ~ As per my report they got 130/90 to 150/110 and finally standing 160/110 .... I told him my heart palpatations he called atrial tachycardia are much more frequent since starting the beta blocker a couple weeks ago...

He just says that it's normal to have a lower b/p with standing not higher and he didn't get why this was. So I told him about hypermobility syndrome and dysautonomia ~ and he said well let's just double your metoprolol and we'll see you in 6 weeks. I told him I feel like crap while standing at work and have to or am compelled to lie down to recover and bring VS into a more normal range.......like in the middle of the night last night after a bout of a bounding tachy heart pattern my b/p was 95/66....surely from the recovery that the rest of the night time can bring. It kindfa feels like it's beating way too hard or forceful ~ I've had that quite often lately too.

I told him of more strokes for this group of hypertensives than any other group and he still didn't get it. Finally he said ~ okay so your b/p is a little high today (???? how about all week rarely ever less than 150/110 with activity) --- who is taking care of your hypermobility syndrome?

That was when I wanted to run screaming. NO ONE BUT ME evidently!!!!!!!!!!!!!!!! I have a pain doc, an internist, a neuro doc, a dermatologist, a rheumatologist, a geneticist, a few orthopedic surgeons, and all of them admit to being just about as clueless as can be about what I have either by saying so outright or typing things that are so out of date it's ridiculous.

I see this local neuro once again on Wednesday and the last time I saw her she was puzzled and began to act like I was crazy or something.....Yet I didn't call her for an appt. ---- I sent the genetic report and she called me to come in. Maybe she'll know something about dysautonomia or who I can go to for a diagnosis, treatment plan (that works better than this beta blocker) and maybe a little hope. Or she'll ask me to see a shrink for a medical physical problem....in which case I'll politley decline and move on ~

But I have to be prepared mentally for her to dismiss me and my symptoms as well. I'm feeling a bit sad and a bit like indulging in a pity party ~ but truth be told things could be so much worse....... Yet I have lost my career, my livlihood, and most of what makes many lives enjoyable.....

I asked about a tilt table test and the doctor said it wouldn't show anything because I don't have orthostatic HypO-tension (today) ~ just hypertension ~ And I told him -- I've documented I go to both extremes even in a day! He wishes someone other than him would take over my case that knows about these things ...... But till that time just take double the beta blocker....

Thanks for allowing my venting pageful of nonsense! I would like a diagnosis too because dealing with something as important as your heart deserves a name and some watchful care to my way of thinking.... Ah C'est la vie I suppose :-)

[janiedelite]

I'm sorry you've had such a rough time finding anyone really competent to treat your HMS and POTS. I'll qualify my advice by saying I do NOT have HMS, but I have the same patterns of BP and heartrate as you describe. When I went to Mayo, they neurologist there said that my high BP on standing was a result of an over-compensating sympathetic nervous system, which was trying to make up for the pooling and lack of upper body bloodflow. He said to treat it like Issie described, waist-high compression, and increase your blood volume. This has helped my BP fluctutations and fatigue more than any medication. Good luck .