Blood pressure issues

[Katje]

I am convinced my blood pressure issues are connected to MS but having a hard time having doctor to believe me and in fact they just wont treat me for it anymore.

My BP is labile, which is not uncommon. Some people have that. My BP is usually borderline high even with meds, the lowest on good days at rest was usually 125/85 on an average, however usually the bottom number would fight to be in the 90's. Been like that for years. I would have spikes not controlled with meds and spikes assosocared with stress or pain as high as 180/110. I had numerous cardio tests in the past and they found nothing, I was just told thats how I was wired.

After my last attack my BP dropped to 110/70, I had to stop meds because I started to get dizzy. No matter what stress or pain I endured it remained low, my doctor thought it was great so I have been off meds for months.

Now it's back to 120/98 if I take meds the bottom number drops too low. I feel out of breath a lot when I walk, heart pounding or I sweat after walking around a store etc.... yet I am told there is nothing wrong with my heart.

I am so frusted, I am assuming this is MS related in some way. Maybe a lesion in a part of my brain causing all this craziness?

[Beema]

I have went through this with the bp. I was never able to go off the high bp meds but kept having fainting episodes. I also had a rapid heartrate. The finally diagnosed me with several autonomic dysfunctions which the electrophysiologist, cardiologist and neurologist feel is secondary to my MS. Most days now my bp is low but again I am on meds.

This is how they are having me deal with it. I am to drink 150 oz of fluid daily in other words hydrate and hydrate some more. I am also to be sure I get enough salt each day. Sound counterproductive with the high bp but it works.

I still am unable to stand or walk around more than a few minutes at a time without danger of fainting but I am better than I was 4 years ago when they diagnosed me as long as I do these things. I get frustrated as I can't function as I used to but this is better than passing out. Maybe you could ask for testing for autonomic dysfunction. Hope this helps some.

[Katje]

Who would I ask? My primary care doctor is sick of hearing about my bp. I feel awful so often because of my BP not MS. I do feel light headed sometimes.

[22cyclist]

Katje: you need a referral to a cardiologist. I have autonomic dysfunction due to my MS. There is a whole thread on it I will try to find it and post it. If your present PCP will not refer you, you may need to see a new one. You may be able to get your neurologist to refer you. Anyway, your lower BP is not that low. I understand it may feel low to you, but it is really in the normal range, at least acceptable range. If you see a cardiologist he/she may be able to find something abnormal in your cardiac structure or your actual heart rhythm. It is good to see them for these reasons since this may be why you are dizzy.

Good luck and let us know how it goes, OK?

Lisa
Moderation Team

[Fed Up]

In the past year I have struggled with a very high (for me) blood pressure. On the flip side, I have syncopy with it. I've been to cardiology and neurology for it. No answers and no heart problems.

It has not responded to several blood pressure medications. Finally, out of shear frustration, I started using salt--something I have NEVER done, as I never use a salt shaker or add salt to anything.

Oddly, my blood pressure remains high for me, yet within normal limits and much higher than yours, OP.

The syncopy (vertigo) bothers me more.

I had a treadmill stress test which evoked the syncopy. I am told that syncopy is a symptom of auto immune disease and Blood Pressure can be, also.

This week I am having tests for Cushings Disease; possibly steroidal induced. I suspect anyone with M.S. has been treated with steroids and therefore, may be prone to this disease, as well.

OP--dizzy and the lower B/P is certainly something you need to get a handle on. Sure hope you can see a cardiologist and get the proper testing done. You may have to insist or even change primary's.

However, given your B/P..it is pretty normal, maybe high for you, but not all that abnormal. The lower number (diastolic) usually fluctuates a bit at home on monitors and is not always a reliable reading. There are tests a cardiologist can order to get more information. Sad, your primary isn't doing that. But, your B/P is not that alarming.

I simply quit taking mine and it seems to be within normal limits, most of the time. When stressed..everyone's blood pressure goes pretty high and returns to a more acceptable level, once the excited passes.

Maybe just let your PCP know that the dizzy spells are extremely alarming and you'd like to see a specialist for it, before something happens to you and limits your abilities, as a result. If you cannot get a referral or proper labs; change M.D. PCP's. You may have a dud. fed

[Katje]

I summarized my blood pressure not to bore people to death. If I have any stress or even slight pain it jumps to 191/110. I had it at that level after each csection for 3 months. Would not go down with any meds.

It started to go down finally on Azor 40/20 and some other bp med. But then I felt out of breath and my pulse would jump to 130.

Now after 2 years it's been pretty stable on 10/12.6 lisinopril but when I go to my doctors it would always be 160/90, at home it was normalish.

After my last relapse which was in April it dropped to 110/70, the doc's thought that was great and i felt fine. But on the other hand I was wondering why? I stopped taking my meds that I was on for the past 9 years because I got dizzy. Now recently it started jumping up, I had a headache one night and it was 172/105. I put ice on my head and it dropped to 117/85.

I am afraid to take my meds when my pressurfe is 120/95 because it might drop too low. so I dont know what to do.

My diastolic has always been high.

[pennstater]

Hi Katje,

I am usually 110/70, but sometimes 102/66 without meds and have been most of my adult life. My old docus used to say it was because I ran 5-6 miles a day, but since it's been 12 years since the last jog, that is definitely not it

I do have issues with dizziness. How are your other markers or do you get any chest palpitations? Since my cholesterol, triglycerides, glucose, and EKG are all normal, they don't feel BP is a contributing factor to the dizziness. They consider low blood pressure anything below 90/60. I have had it drop as low as 90 over 58 during Tysabri infusions ( I do feel the change when it is that low), but it always rises back when completed.

They also took blood pressure repeatedly standing/sitting. I think they said if it was more than a 20 point change when position changes, then it would be something to look into. Since it didn't change significantly, they weren't concerned.

I may ask them to check the C-Reactive Protein measure next time I get blood work, just to see if it is elevated. I know it measures inflammation and can be a risk factor for heart disease. Since it runs in my family, I always have it in the back of my head. And since the MS already interferes with the sensation in arms/neck/rib area, I get concerned that I won't feel the warning signs.

I do hope you get some answers soon and your BP stabilizes more for you. I definitely understand the frustration and fears.

[Special Kay]

Sounds like a cardiologist is warranted, like others said.

For perspective, my BP is always low, as I've been a runner for years and also meditate. Last time I had my Tysabri infusion it hit an all-time low of 90/48 and the nurse didn't even blink. It is rarely higher than 100/60 as long as I am sitting.

I have functioned fine this way forever, so I'm not surprised your doctor didn't get alarmed at your low number.

The lability is a concern but only if you are taking your BP under similar conditions every time (sitting vs. standing, not immediately following a vigorous walk, etc.) Even engaging in an animated conversation can elevate your BP.

[JerryD]

Katje,
I remember that my MS symptoms began when my BP started to alarm my PCP. I don't think that having MS is 'unrelated' to a change in BP.
I thought you were going to see Dr. Burt at Northwestern in Evanston. Is that still a possibility ? Have you seen the news from the Tisch MS center in NY ?

[TerriLC]

High blood pressure

I stay away from salt.....use a salt alternative....blood pressure is normal now

[Katje]

Katje,
I remember that my MS symptoms began when my BP started to alarm my PCP. I don't think that having MS is 'unrelated' to a change in BP.
I thought you were going to see Dr. Burt at Northwestern in Evanston. Is that still a possibility ? Have you seen the news from the Tisch MS center in NY ?

I decided I wanted cosmetic surgery first in which I will pursue starting next week after my girls are in school. I feel ok MS wise... for now anyway. Every now and then I get a strange arm tingle or something but it goes away.

I don't know anything about the Tisch center sorry. I don't keep up with MS stuff.

[Katje]

Whats the Tisch MS center?

[rdmc]

Katje,

I have mentioned this on other threads, but I have BP and heart rate issues. After many tests, visits to ER, cardiologists, and BP specialist (nephrologists) it has been decided that it's MS related. I have medication regimens that I use to control it, and so I'm pretty much in charge of my own medication dose, depending on what is happening. I'll try to chronicle how they determined it was MS related.

A couple years ago, I kept complaining to my GP that my BP was spiking, and creating a "feeling" (full head feeling, sweating, stuffy nose, adrenaline rush, flushing) so I knew when it was going up. It wasn't unusal to hit 210/110, sometimes arrythmia and tachycardia accompanied it. I had always had "white coat syndrome"....but this was different.

So he started by ordering tests for catecholamines. First was blood work, and when it was high, then it was a 24 hour urine test, and it was also high. Catecholamines are basically epinephrine (adrenaline), norepinephrine, etc.

Off to the BP specialist, i.e. nephrologist, who ran a 24 hour BP monitor, and found that although normal a lot of the time, I was having those spikes during the day, and even in my sleep. So he looked for a pheochromocytoma (using an MRI of my adrenal glands)... no pheo found, so the specialist chalked the bp up to MS.

Then it was thought to be autonomic dyreflexia (it can affect a spinal cord injury patient or MS patient with lesion above T6.) I couldn't determine a trigger, so that diagnosis was in question, but I was taught to treat the spike in BP as you would treat dysreflexia. Clonidine is the drug you use to bring down the BP. I take a small dose a few times a day, but when I feel the BP rising, I can take a certain number, at certain time intervals, to see if it brings the BP down. If the BP doesn't respond, I have to go to the ER (they monitor you and use IV meds to bring it down.)

Then I started having SVT episodes, and they were able to catch it on an EKG when I ended up in the ER (via ambulance) because the SVT was causing my BP to do strange things like high systolic and low diastolic (150/40.) So off to the cardiologist for heart tests, and since my heart tests were normal, I saw the electrophysiologist at the cardiologist's practice, and he surmised it was MS related, and an ablation wouldn't help. So another med was added...Atenolol. Same deal, I take a low dose every day but when an episode comes on I take an extra Atenolol and if it doesn't respond within a certain amount of time, end up in the ER for them to bring it down with meds.

So I feel more in control now, having meds and knowing what to do when autonomic symptoms occur...and when to seek help. I always carry Atenolol and Clonidine with me, I never know when this is going to hit, but I do know that stress, either good or bad excitement, makes me more prone to it happening. If I'm at home, I get a glass of ice water (that helps with the SVT) and pop the pills, trying to stay calm to see if there's going to take effect. The pattern now seems to be that when the BP spikes the SVT kicks in too.

I do have a lesion in my medulla...so that seems to be the reason they think I have this. It's been explained to me that it's like I have an on switch for the BP or heart rate, but the off switch that normally would bring the pressure or heart rate back into normal mode doesn't seem to work too well, thank you MS .

If you can find a Dr. (in this case it was my GP) who is willing to help you navigate the maze of specialists and testing, and to do it in a logical manner, it really helps. Things have to be ruled out, medication regimens have to be laid out so you know what to do when an episode happens, otherwise, it's just a crazy feeling of not knowing what to do and when to do it and only adds to your stress level.

Sorry for the "novel" but I hope by laying out how my docs figured out what was what, it might help you find a way to an answer and fine someone who can help you get to the real problem.

[seal]

A couple years ago, I kept complaining to my GP that my BP was spiking, and creating a "feeling" (full head feeling, sweating, stuffy nose, adrenaline rush, flushing) so I knew when it was going up. It wasn't unusal to hit 210/110, sometimes arrythmia and tachycardia accompanied it. I had always had "white coat syndrome"....but this was different.


I about choked when I read this! I have been having similar issues. The stuffy nose along with all your other symptoms. My MDs (both Neuro & PCP) are dismissive of the symptoms "Not MS, nothing wrong with you).

Bought a blood pressure monitor yesterday and I plan to keep track of bp.

I'm so relieved that I'm not crazy (well, you know)

thanks so much. Sorry you also (and all of you all) have this.

[Katje]

This morning I just work up and took my bp, it was 117/98. I felt terrible ths morning.

Later I was resting and it was 121/85 I stood up and took it and it was 135/99.