Ongoing Dizziness

Dizzy

by JillG - 2022-02-21 11:41:35

Sorry you are experiencing dizziness so frequently. I was having dizzy spells and I was diagnosed with vertigo. I thought vertigo  was just a spinning sensation but apparently it can also be dizzy or feeling like other things are moving. I do have low blood pressure and orthostatic hypotension that has always contributed to my dizziness as well. Hope that helps. I had to see a neurologist to get my vertigo diagnosis. Wishing you well and no more dizziness. It for sure can be very dibilitating. 

Where to look for help

by Gotrhythm - 2022-02-21 13:48:31

Dizziness is common and can have miriad causes from tight muscles in your neck, to heart, ear, brain, spine, metabolic, blood pressure, etc., etc., etc., etc., etc,. As you have found, it can also be very disabling.

I have certainly had arrythmias cause monentary dizziness, but never anything that lasted whole days. Since you've had dizziness for over a year and you have consulted several doctors without getting any real help, it might be time to be seen at a major medical center. There, they are more likely to have the resources to look for all the likely as well as less common causes.

I don't know what might be availble where you live, but in my experience it has been worthwhile to travel if I must. It isn't always convenient, especially now in a time of Covid, but we're talking about getting your life back. That would make a few hours on a plane worth it.

Hope you're feeling better soon.

Yes!

by MinimeJer05 - 2022-02-21 14:53:51

Hello,

I experience diziness and motion spells all of the time, usually daily. These started around the time of the PM implant and my cardiologist has ran the gauntlet of tests on me to rule the heart out (heart mri, chest ct, regular echo, throat echo, lab work, etc). I've seen a neurologist and they too ran the brain ct, brain mri, brain/neck mra and have came back empty. I recently did a sleep study, which found that i have moderate-to-severe apnea -- currently waiting on the machine.

I also just finished out vestibular therapy, which according to the nurse, has improved my cognitive functions since starting, but to me, it feels more like I went from 0% feeling better to 40-50% feeling better. For me, the vision/motion spells are less intense and tend to stick around for much less time, but I do have my "bad" days where regular tasks can become a bit of a bother. 

I noticed since getting COVID in late Dec. that my symtoms now include a ringing in my ears. This usually happens shortly before I experience a spell or while I am experiencing it. Also, it happens when I lay down almost always on my right side.

My general doctors are aware and as I mentioned, I've gone through the gauntlet of tests, but for now, they are telling me to just practice my exercises and to give it more time -- vertigo/etc. tends to fix itself in weeks/months.

My family suggests I get on the waiting list for the Mayo Clinic if things aren't resolved soon -- I am waiting on my sleep machine to make the next move.

I don't have a great answer for you, but the purpose of my long-winded post was to focus on the fact that it may be related or it may be unrelated -- there's so many things happening in your body at any given time, it can be hard to pinpoint. I have seen a pacemaker specialist several times and they've tinkered with settings and assure me that the PM isn't the direct cause of my own issues and I have spoken with my cardiologist and my surgeon from my mechanical valve implant and they too say it's not the valve or the heart.

Some days I believe them and somedays I don't. For me, it makes it easier to manage if I just tell myself, this is vertigo, no worries, it will pass and I will get better.

Originally, I would induce panic and anxiety around every corner because I kept thinking it was my heart and that something more fatal was happening.

Try to remain calm, focus on what you can control and push your doctors for answers. If you aren't getting the help you need, don't be afraid to look elsewhere.

Take care and keep us posted

Jer

Dizzy

by AgentX86 - 2022-02-21 17:14:35

Vertigo is defined as a subset of the dizzy with a spinning sensation. "Dizzy" can also be feeling faint, weak, or unsteady. Vertigo is usually caused by an inner ear problem but , of course, can be brain related. Dizzy with no spin is generally not an inner ear issue and can easily be a heart or circulatory problem.  In particular it can be caused by low blood pressure, which can be caused by dehydration (there's that ugly word again). It can also be a brain issue.  Since I am hypertensive and only wish I were otherwise...

I have a balance problem where my feet feel like I'm walking drunk.  I'm fine when I'm sitting but I fell like I'm walking in a canoe.  Sometimes I think I couldn't pass a roadside sobriety test. Doctors ignored my complaint for years.  I am also hyper-sensitive to unexpected changes in terrain, even as little as an uneven concrete floor (i.e. not very uneven). It's not debilitating but quite annoying.

I also have a problem where once a month, for a day or so but multiple times during that day, I'll get a feeling of falling forward, another really wierd unexplicable sensation, sometimes SOB, and the smell of blood like a nosebleed. Not all of these sensations are apparent in each episode. Since it happened every month, almost like clockwork, everyone ignored me.  "That's impossible".  Well, it wasn't.  During one of these episodes I went into a full grand mal siezure. It got their attention.

Enter yet another set of specialists into my life... The neurologist did a head MRI and found, possibly, two small lesions on the cerebellum.  His thought was that these are "micro-infarcts" caused by tiny Afib clots going to the brain, likely from before I was anti-coagulated (not my thoughts but he wouldn't listen anyway). He prescribed an anti-convulsive drug for it.  It hasn't completely fixed these "aura" but it's helped.  He doesn't like the "helped" part. Another siezure my be around the corner.

Link:  My neurologist's PA noticed that when I walk, I look down.  He grabbed my MRI (he hadn't looked at it before) and pointed to the two spots on the cerebellum.  He said that the cerebellum was responsible for coordination and that my brain apparently couldn't trust my feet so to get more information, I looked down at my feet. Balance problem explained - a twofer.

Anyway, keep looking for a reason and hopefully that'll lead to a solution.  Make sure you go down the neurological paths and get a good neurologist. Note to self: take own advice. I don't like my neurologist but I do like his PA.

AgentX86

by MinimeJer05 - 2022-02-21 22:50:13

Very interesting story that you shared. Makes me wonder if I'm perhaps experiencing something else then? I don't have the spins at all, but more so things appear hard to focus or just make me feel sick (like you dropped me down a roller coaster or spun me around and stopped me). Nothing spins, but my stomach reacts as if it has -- tight, nauseated, loss of appetite. 
 

My blood pressure is usually in range (120/80) if not a little high (130/85). The lowest I've seen is 115/72. 
 

I too experience weird balance where to me, it feels like my feet are sinking into the ground and I can't make up what is "solid". My head will feel heavy and I find myself leaning on my arm or on headrests in chairs. I could probably walk a straight line, but it doesn't "feel right". 
 

I've only ever fainted the day before I got the PM. Otherwise I've definitely felt sick or like I could faint, but never actually have. 
 

I've had 2 brain MRIs at this point, 1 head CT and one neck MRA and they've only ever found "white foci" or something similar to that of a migraine?

Jer

More dizzy

by AgentX86 - 2022-02-21 23:33:07

Your description is pretty close to mine. my "roller coaster" feels more like I'm standing in the car as it's just cresting the hill. It's at a low speed as it crests and starts accelerating down (I was never able to come up with that description until you mentioned it). No, no spins, which almost rules out the inner ear.  I recover very quickly, no more than thirty seconds, except for the seizure of course. Since it's so short, there is no problems with apetite and no longer lasting symptoms.

Your BP is fine so i wouldn't think that would be your problem, though taking your BP is like an EKG.  It doesn't show the whole picture, just a snapshot. Your BP could still be crashing.

Walking:  Yeah, that's close.  I sometimes run into things (like the wall next to me).  I'm almost paranoid walking down stairs and have to hold the handrail and watch my feet. My neurologist banned me from ladders.  Covid had its advantage.  Visitors weren't allowed during appointments so she didn't hear it.  ;-)

White foci.  I had to look that up but yes, that's the same thing my MRI found.  As I said, my neurologist thought it was from clots thrown off because of untreated AF.  The problem with that theroy is that it started after my CABG surgery, when I was already anticoagulated. I didn't want to contradict him (no point) so said nothing.

The scary part is that these are associated with MS, as well.  I'm probably too old for MS but it's still not a good thing. My DIL is going through that now.

<https://www.thehealthboard.com/what-are-white-matter-foci.htm>

Blood Thinners?

by MinimeJer05 - 2022-02-22 09:45:02

AgentX86,

That bottom part, are you saying if you are on blood thinners that it's less likely or impossible to get clots? I've been on blood thinners since Jan. 2020 and have had no issues until the PM in Sept of 2021. The reason I ask is because I've had others make the comment like "oh you're on a blood thinner, no way you'd ever develop any clots" and I wasn't sure as my INR is pretty low (they keep me between 1.5-2.5) and wonder if that means that it's still difficult for me to develop clots?

Is there a way to "test" for MS?

I've been getting more relaxed about all of this (learning to just "live" with/around it, but I do wonder if I should be pressing doctors instead of "going with the flow". Everyone keeps reassuring me that it will get better and that it's nothing serious, but my mind constantly comes back to the worse and I hate the feeling of wondering if it's something worse and if we "catch" it early, can prevent worse damage vs stressing myself out too much and making it worse through anxiety and panic. 

Jer

Blood thinners

by AgentX86 - 2022-02-24 18:45:10

Sorry that I didn't get back before but this stupid site threw away my response twice yesterday so I gave up.

Like everything else anticoagulation isn't perfect. Indeed it's not intended to be.  Perfect anticoagulation is called hemophillia. Anticoagulation is a tightrope walk between clotting (ischemic stroke) and bleeding (hemorragic stroke).  The keyword in both, "stroke". Your IND of between 1.5 and 2.5 defines that tightrope for you.  I know people who's INR has gotten away from them with a 6, which is a medical emergency.

I asume that since you're talking about INR that you're taking warfarin.  The DOACs work differently and don't require constant testing.  DOACs are much better and safer than warfarin but are significantly more expensive.  Some don't react well to (perhaps some of) them so warfarin still has its uses.

Yes, there are tests for MS but I'll leave that up to your doctors.  You don't want to buy trouble. The fact that you've had MRIs and your doctor's aren't running in circles hair on fire, tells me that you're OK here.

If they're saying that it will get better, give it a chance.  Ask them how long you can expect before that happens.  Note that you're not a clock and it will be different for everyone.  If they say "in a month or two", ask again in two or three.  Don't let them forget you though.  You deserve an explanation  but it might not mean you'll get one.  This stuff can remain unknown.  I just ran across an (not necessarly the) explanation because my neurologist's PA noticed my head position when he had me walk across the office and then found the white space to explain it on my MRI. My neurologist had the same information but missed the connection.

I woudn't get too worried at this point.  Let this play out the way your doctors want it to and if it doesn't, then demand better answers.I didn't and just got lucky.  In reality, there isn't anything that can be done about it so I guess it doesn't matter.

Makes Sense

by MinimeJer05 - 2022-02-25 15:14:05

AgentX86,

Thank you for the response and I really do appreciate the conversation and information. I think you are absolutely right and I will do just that -- "let it play out".

I always try to better educate myself while reading through everyone's experiences on these forums and I really do appreciate your responses and ability to shed some more light on your situation and how it can relate to others -- it makes a world's difference hearing someone elses story (whether it's similiar or completely different) and knowing that it just might be okay eventually.

I also never knew much about warfarin (yes, your guess is correct, that is what I take daily). They basically said after the mechanical valve that I didnt exactly have a choice to take it or not and I have been going every other week to get my finger poked (or sometimes a tube of blood taken) to get my dosage changed. I haven't noticed any real issues (my bloody noses might stick around for a few mins longer and paper cuts require band-aids). I don't get bad bruises or severe bleeding and I otherwise feel fine taking it. My "magic number" has been between 1.5-2.5 with an even more focused goal of 1.5-2 if possible (I guess the specifc heart valve I got had a benefit of needing less dosage over time). After my PM it was a little low (1.3-1.4) and then it got kind of high (2.6-2.7), but never anything too crazy.

I hope you continue to answers you seek and remain in good health. Thanks again for the comments and take care!

Jer