fatigue, exhaustion .....

[Lulu54]

Here's my question for the week - I am having extreme fatigue, feelings of lightheadeness as if I could faint (but I haven't!) and overall feeling of having an  "out of body" experience.  It sounds like MS, right?  

Maybe not.  I had a cardiologist appt Friday and my blood pressure was 88/53 with a pulse of 93. My EKG was unchanged from January.   The nurse suggested that maybe I shouldn't even drive myself home. My BP has been running low for about a month.  I had stopped my heart meds for the angina (norvasc) a couple weeks ago to see if it would help, and it really hasn't. My cardio orderd labs - cbc, and a complete panel of everything else to check for anemia, sodium, electrolytes, etc.  

He ordered an echocardiogram - which they squeezed me in for on Tuesday.  In the meantime he gave me two choices because we have to get my BP up - for now he has me adding sodium to my diet to see if that will help.  I immediately went for Chinese at Lunch on Friday - that's the saltiest food I could think of.  It didn't help.

If that doesn't work, he said there is a drug we could try, but it constricts the vessels, and he is unsure how my MS might react to an artifially induced hug of my vascular system. It doesn't sound like a particularly good option.  

I have NEVER  been hypertensive in my life, and that adds to my heart attack mystery.    My BP runs around 90/60 to 100/70 most of the time.  I run no risk of wearing out my heart from overworking it.

I mowed the grass in 80 degree heat the other night - my MS leg objected to the heat, but my BP didn't really budge.  When I came in to rest my BP was only 94/62.

there is a water aerobics class I am doing twice a week - it does make me feel better and I told the doctor that the exercise helped but it was only temporary.  By the time I get back to my desk I am again exhausted.

I have been eating like crazy - I told him I am eating everything trying to find something to make me feel better -nothing seems to work, but I am enjoying the extra sugar and carbs!  LOL

I did ask about the possiblity of lesions affecting the autonomic function, and he said it was possible but deferred to the neurologist for more on that. He is going to look at it as a cardio issue .

the drugs I am on right now are ampyra, baclofen, aspirin, and hiprex in the morning doses - I don't see BP issues as a side effect for any of them.  I cut back on my daytime baclofen and am walking like the  tin man but figure it might have something to do with this.  No change there, either.   Both my neuro and cardio are ok with my tweeking my drugs as needed.

My question - yes there is one in all of this....... does anyone have any experience with this problem or perhaps I should role over to my old heart site and ask those fine heart sisters.  The tiredness is crazy - i just nodded off typing this messsge. I'm wondering if the MS fatigue is playing a role....

I'm open to suggestions if you can make any sense out of my ramblings here. - Lu

[twopack]

Was there a urinalysis and white blood count among those lab reports?  I know you had some problems clearing that UTI a while back and still battle urinary retention issues.  It is possible for systemic infection to show up as a low BP and rapid heart rate.  I doubt that's your problem this time around but you never know and it isn't the type of thing a cardio would usually look for.

I hate even more to bring up this last potential factor but here goes.  The longer we live......huh.... the more changes we see.  The resistance and the compliance of our blood vessels changes as we....... ah, mature.  That can cause the diastolic pressure (the bottom number) to drop a little.  But it is just as common to see the systolic pressure rise at the same time.  So this apparently isn't a factor for you at all!  Correct??  Horray!!!

Are you still symptomatic with the low pressure?  I'm a little surprised they are so keen to expose your post MI heart to a higher BP Lu.  It seems most cardios love, love. love to see those low BP numbers in their patients.

BTW, I asked my PCP to run an ECG when I saw her (for the very last time -sob. sniff, sob) last Thursday.  I was a tad uneasy with all this pressure I've been having from the MS hug in my chest and throat and the cardio has NEVER done one in his office.  She did it and there were no changes whatsoever.  Yeah!! (but I sure wish this was easier to tease apart and figure out).

Mary

[rita2007]

It sounds like you are on the right track. I will share with you that my husband had similar symptoms and he always had high bp.  After blood work and and a real scare because of low white cell count, we found out he had Epstein Barr.  Like an adult form of mono, which is not good for us since we already have a suppressed immune system.  I suggest you have blood work and rule out all things like thyroid and anemia.  Take care and let us all know how you are.

[Lulu54]

The cardio nurse called yesterday and said my echocardiogram looked fine.  so did all my labs.  so we are back where we started - I have low BP for unexplained reasons.  We can file that in the mystery folder along with my heart attack for unexplained reasons.  At least I have a good cardio who is willing to keep looking.

[Sumanadevii]

Lulu, I have been thinking about you and sending strength.  It sure sounds like it has something to do with the bp...I hope we hear soon of test results.  In the meantime make that rest time cozy and don't feel guilty.  It is what it is.  Try to enjoy it ..I know it is hard when it is interfering with your life.  Hoping for a quick resolution.

Mary...lol...you do make me laugh.  Thank you.

[Lulu54]

It appears the salt loading  - yes Khiba, it is sea salt   :-) - might be helping ..... last reading just now is 99/66 but I can't stop yawning.  I think it is time for a nap.  

Thanks everyone for your comments and concerns.  I just want to feel some energy.........

Lulu

[Sparkysarah]

Hi L

I am only just dipping in intermittently at the moment trying to catch up on what has been going on in my absence but am still feeling a bit low in relapse so not doing too much.

However although I cannot add anything to match Mary's wit, I can sure send you an enormous hug to say I am so sorry to hear all that you are going through at the moment and hope you can find some answers and feel better soon.

Love and big hug

Sarah xxx

[Khiba]

If you are going to load your salt, please get some good salt like celtic sea salt or himalyan salt. They are more natural and haven't been bleached and aduterated!

I have low pressure too, and take thyroid which does help raise it some. Straight T3 or Cytomel for me. If I hit 100/72 its a great day. Usually, mine runs 90/60. I have low heart rate too and am no longer athletic. Sigh.

There are also some fluid drops out there that replace the minerals in your water that reverse osmosis takes out. I find I am not nearly as dehydrated when I take them. Try googling YogaBody E-water or ConcenTrace Trace Mineral Drops by Trace Minerals Research.

Its sad that even our water lets us down. :(

JJ

[Lulu54]

Mary,
Thanks for checking in and making me laugh.  Six weeks?  That is quite a haul, and I wish I could blame it on the decadron, but this started before I did that round for the relapse.

My labs all came back normal.  I haven't heard on my Echo - but the tech said nothing looked abnormal.  

The diastolic is still hovering below 60, but I have gotten my systolic up to 95 or so a few times, so perhaps I am on the rebound here.

Funny, but exercise makes me feel better and obviously it must increase my BP.

thanks,
L

[twopack]

I've been thinking about you Lulu.  Are you getting any symptom relief at this point?  My MSologist mentioned on Monday that the steroids would keep floating around for about 6 weeks.  I'm sure their influence gets weaker as time marches on.

Has the cardiac investigation been wrapped up yet?  Those low BP reading are great if you can go there without symptoms.  All too often the brain starts complaining about how blood is being distributed poorly and how unfair it is being treated as a VIO (very important organ).  When your brain starts threatening to "take you down" so it can recover it's entitlements it is definitely time to call in a mediator to help resolve the despute.

Hope it is going better.
Mary

[twopack]

I never said or meant to imply this was a bad choice.  The point is to always read labels.  Electrolyte replacement drinks have changed over the years.  Many are low cal and low carb.  Some certainly are not.

How about nuts?

Mary

[Sumanadevii]

Ummmmmmmmmmmmm...there is a low cal gatorade.  

[MonkeyMom4]

Ok, yes, gatorade may not be low calorie...but I figured it's probably lower than the pizza and potato chips others had suggested.

;-)

[Lulu54]

I was 81/60 this morning while I was having my first cup of tea.  I look forward to the echo tomorrow and getting my lab results.  Then we can plot the next step.  I'm not calling the neuro until I have some of these answers from the cardio - no sense in sending two big  dogs out on the hunt right now when the cardio is on the trail.  

@deb . The tilt table test is a good idea, though a test I prefer not to go through.

[Deb61]

Your cardiologist may want to do the tilt table test to see if it's an autonomic problem.  My sister has this problem, too, which started up right before her MS diagnosis.  I cannot think of the name of the problem she has, but MS could have been related to the cause.  I think it was some how related to the vasovagal nerve; however, I do not know this for sure. If I hear from her, I will ask her about it.  Her blood pressure is also very, very low.

Take care, Lulu.
Deb

[essdipity]

Lu, I wish I had words of wisdom here, but I know zilch about heart issues. Your BP does sound very low, though. Mine generally runs 110-115/70 or so, though when I was in the hosp dealing with my ankle, it went as high as 185/105. That was attributed to pain, but who knows.

Wanted to respond to your post yesterday, but I was too tired. :-)  Literally, I slept all day. MS fatigue can get that way, and maybe that's what you were describing, or partially MS. The feeling faint, etc., is NOT MS fatigue.

It sounds as if the heart is kicking up or kicking in to tell you something's wrong, so just trying to feed the symptoms, like adding a lot of salt, may not be the answer.

In any case I am deferring to those here much more knowledgeable than I on such matters, so will wish you a fast and clear resolution of this problem. Not to mention sending many hugs.

ess

[twopack]

Decadron is a long-acting steroid so has a half-life of 36 to 54 hours.  

I don't think the steroid factor can be completely dismissed even though the majority of it is probably excreted by now.  I was supposed to give some blood and urine samples for a research project just about the time I started the prednisone and IVSM.  I've been instructed to wait until 30 days after the steroids are finished to collect and submit the specimens.

Mary

[RazCarver]

only had decadron once as a shot. so it was a one time deal and I don't know the dosage. that makes a difference of course. they told me it would last about 3 - 4 days.

normally i get predisone - not the high dosage like for MS relapse. just the normal 100mg a day for a week and then taper for a week. that takes about 5 or 6 days to run through my system. at lest the worsening of tremors takes that long to stop and the heart rhythms going wacky to stop.  

so no i guess i really don't know but seems like 8 days it should be out or nearly so.

[slightlybroken]

Hi LuLu,

As you know, I'm not DX with anything, and my blood pressure does run normal to low/normal, but I've had similar experiences due to heat exposure.

Here's an old post of mine from when it first occurred.
http://www.medhelp.org/posts/Multiple-Sclerosis/Was-This-The-Uhthoffs-Phenomenon-Or-Something-Else/show/1275605?personal_page_id=876278

I also had it happen several other times last summer and again during New years Eve, which I think was the last big time it occurred (It was really hot where we were at).

If everything checks out with the heart (no heart rhythm issues, blockages, etc..) then an ANS dysfunction issues caused by Uhthoff's Phenomenon due to MS could be the factor.
A lesion in just the right place can cause ANS dysfunction, and it would be aggravated by the heat, causing the drop in BP.

I'm glad your seeing the doctor and getting checked for any underlining infections. In the meantime Stay Cool!!!

[Lulu54]

@JJ and Sumana  - smoking room on the ward? heck, we smoked in the room.  Shoot, we smoked everywhere, didn't we?

@Pam - 90/60 is my normal range, too .  Even during my heart attack it only got up to 150-something over 110'ish.  It's quite the weird feeling when it goes lower - as I wrote, it is an out of body feeling.

@Mary - thanks for all the ideas.  Yes, I do know when I should head to the ER. I was close last weekend but a nitro tab and tums and a chewable  prevacid stopped the distress.  A second nitro would have prompted the 911 call.  The carido and I wish we knew which one made me better! I suspect the decadron set off the gerds.   I promise the last thing I am doing is withholding fluid.  I drink water all day long - my kidneys are much too precious and after all the UTI battles I have had for the past year or so I am not going to compromise that.  

@all  - we are so lucky to have such a skilled group here - between personal experience and professional training I think you have covered all the possibilites.  thanks for taking the time to pitch in with ideas and answers.

hugs,
L

[Sumanadevii]

Heck, they smoked in hospitals, in grocery stores, even department stores.  Looking back I guess we just accepted the smell.  If any store had been brave enough to place a no smoking sign, there would have been an uproar...I know people smoke in the commissary on base!!!

Lulu, I wish I had an answer for you.  Your regular pressure is the same as mine but the one you are telling us about is too low...way too low.  So I think speaking to your heart sisters would better serve  you.  You have had MS long enough to know fatigue and it hasn't done this before?  At least I am assuming...

I hope you get an answer...soon...

[twopack]

Of course this could be an ANS problem, a brainstem lesion problem, an MS problem, a steroid problem or any combo of the above.  I've been trying to figure out where this type of symptom fits into the MS diagnosis almost as long as I've been diagnosed.  It's why we are always asking the 'experts" about ANS involvement in MS.  Unfortunately, many of us have the symptoms but few neuros will give more than a nod to the possibility it even exists.

The NDRF (National Dysautonomia Research Foundation) publishes a book titled "Handbook For Patients with Dysautonomias".  I've found it available in free electronic form online but don't have the link at hand right now.  Low BP and higher heart rate would point more to POTS, one type of orthostatic intolerance.  It isn't simple with MS though because symptoms can be mixed and you can have symptoms without actual BP and HR changes.

In my case, I can have an exaggerated response to stress and my BP will spike.  Exercise can make it go up but it can also make it drop like a rock.  If they treat me for hypertension I end up in the cellar.  High feels better than low and all the cardiac tests were good so I choose to take my risk on the high side (as if I have much choice anyway).  Right now I'm trying to figure out how the spasms and parasthesias fit in here too.

My IVSM had my BP high Lulu.  I was wiped out on them until the end.  The last two days I feel juiced off and on but also crash between.  The steroids can change so many things with circulation, heart, blood sugar, digestion, etc. etc.  As can the ANS and that pesky Vagus nerve (CNX).  It's very hard to tease out what is what and how to control it all.  I took my last taper pill today.  Maybe I can begin to sort out if it even helped or not after another week or so.

You could try some broth to up your sodium.  Electrolyte drinks may or may not be low calorie.  They used to all have all calorie and carb counts.  Nowadays they are more often low calorie and have balanced lytes (so might not help so much).  

I too can feel better with activity but sometimes activity will make my BP drop rather than go up.  Eating sometimes seems to make symptoms fade away but not always.  I seem to keep trying it all day long though!  

It must be extra hard for you to experience these symptoms with your cardiac history Lulu.  I know I would be telling anyone else to RUN to the ER if they felt like I do.  Yet I've had the full cardiac workup (except a cath).  The electrical had some glitches for a while but the plumbing couldn't be better.  Still, when that pressure tightens around your chest and throat you can't help but wonder how long old test results can be relied on.

On the side, I know bladder control is something many of us really battle BUT please be careful about gaining control through fluid restriction.  Kidneys weren't designed to be too dry.  Actually, nothing about the body is.   Besides, restricting fluids will increases your risk of UTI.

I've probably rambled enough and too much.  I'll try to look up some of the best of the best ANS stuff I've found.  It will be really interesting to hear what your own neuro has to say about this.

Be well back at you.
Mary

[supermum_ms]

My MIL has had low blood pressure for donkey's years but it was only late last year and into this year that she started passing out or having what she calls 'turns'. After a tonn of tests and trial meds that gave no further clues, her GP had her tested for water absorbtion or something like that. Anyway it turned out that her body is not rehydrating properly so she's always in a mild state of dehydration and when she doesn't drink enough it pushes her over and her blood pressure drops and so does she.

I know it sounds too simple but since she's started sipping water all day, she hasn't had the feeling or woken up on the floor. Maybe worth a try to see if it helps, at least it can't hurt or add any unwanted callories lol.

HUGS.........JJ

PS I remember when i was put in hospital prior to having my daughter (25yrs ago) there was a smoking room on the ward, omg it was full of very heavily pregnant women puffing away their long days.  

[drsdonthelp]

Hi Lulu, Hope you are doing well :)
I have low blood pressure, always had. It is usually around 90/60. The highest its ever been is 100/70. For about 8 months I had extreme lightheadedness, falling over with every turn, standing up, squatting down.

I think it was like 15 years ago, I had a weird feeling come over me while I was at work. I had a bad chest pain, got really nervous, and the RN I worked with took my pulse and BP,,,, it was 60/40  she couldn't believe it and was like, um Pam, how are you still standing?

My coworkers called my family to take me to the ER to have some heart tests done. I was having a panic attack.. So crazy, and scary pain, I thought I was having a heart attack because of the tightness in my chest. The docs. said I have a heart like a race horse, I was assuming that was good. LOL That was the first panic attack I ever had.

As far as fatigue, I fall asleep all the time, not like narcolepsy or anything like that, but I get drained after two hours of being up. I take a nap everyday, (I am not lazy)  the fatigue is just overwhelming. I could be on the computer, sitting quietly and I'm out..... I sleep.

When I am tired, my double vision gets worse, and all I want to do is close my eyes.

Hugs, Pam

[Lulu54]

Hi dennis,  Those are very good numbers for your BP - the 132/86 is a slight bit elevated but obviously nothing your doctors are going to panic about.  The 122/66 is a nice healthy number and I doubt that would cause your fatigue or dizziness.

@lisa and raz - this problem started a few weeks before I did the round of decadron - i wish i could explain/blame it on the drugs. This has been coming on for a good month or so.  Do either of you know how long it takes to clear decadron from the system?  I've been done for 8 days, but wonder about that.