Medical Update - Vestibular Migraines?

Hello everyone,

I know my title and main reason for posting isn't directly related to pacemakers (or is it, still to be determined?) but I thought I'd post an update for all of those that have been so kind to me and have communicated with me via threads on this forum and in my personal messages. 
 

I had my PM implanted last August after getting up from a chair and passing out -- days later an electrophisiology test revealed that I needed a PM. I was also born with a bicuspid aorta, which led to a mechanical valve placement in Jan of 2020 and since then I developed LBB but had 0 symtoms and mostly have lived a completely normal life until the PM.
 

After I fainted at work I've developed strange vision and motion "issues" that have gotten better and worse over the months, but lately have mostly been about the same -- they're not nearly as intense and they don't stick around for as long, but they are apart of my daily life. 
 

Symptoms include:

Ringing in my ears, dizziness, motion sickness, brain fog, hard to focus on things, uncomfortable feeling in my neck and upper shoulders, sensitivity to light and worst of all, vertigo (room is spinning, can't make sense of balance).

Originally, I thought for sure this was PM or cardiac related, because this all came on around the same time, but lately, I'm starting to think it was the physical act of fainting (hit my head or neck?) or some sort of nerve damage from the PM install. 
 

Why? Well, I've been able to start to draw some connections. For starters, if I sit for too long or lean on my neck or shoulders in a weird position, I will start to experience all of the things above (minus vertigo). Sometimes they stick around for 10 mins, sometimes 5 hours. Sometimes they're intense and I need to sit, sometimes they're just annoying. 
 

Vertigo spells are less frequent (last one was almost 2 weeks ago) and only stick around for maybe 10 seconds, but when they happen, they are the worst -- I always need to grab onto whatever I can and close my eyes. They also seem to only happen when I'm either laying in bed on my right side or if I look suddenly down to my right (I can't replicate this, but I've tried). 
 

I had a follow up with my nueorologist and he's thinking I suffer from vestibular migraines. If you Google it, most of the symtoms align with what I've experienced. For now, he's ordered another round of vestibular therapy, a visit to an ENT specialist to rule out a few things and a new diet for 3 months (no milk, cheese, chocolate or wine, also wear sunglasses at all times outside, wear blue light lens when looking at screens and take Vitamin B2, D and Mangesium daily). 
 

If nothing is found or improvements aren't made in 3 months, he said we can look into medications (either cardiac-type such as a BP med, or anti-depressants or epilepsy meds) -- he said we will discuss those when the time is right. 
 

Until then, I just keep living my life as best as I can. Cardiac team isn't following up until Oct, PM check scheduled for late May and a general doctor visit for Wed (I had two weird events, 1 each of the past 2 weeks where I was standing and talking to someone and I suddenly lost my breath for 5 seconds and felt a warm tingle sensation in my chest. No pain, and they passed quickly, but odd none the less). I think these are related to my motion in my head. 

I've otherwise been in good spirits -- being able to "rule out" cardiac stuff puts my mind at ease. My anxiety and panic has been much lower (haven't had an anxiety attack in months and generally can feel them come on and talk myself down or drink some water to relax). It is frustrating as I can't seem to do things I enjoy. 
 

Going to the movies is hard. The first 1.5 hours is fine, but then at 1.5 hours or 2 hours my neck will bother me and no matter what I do, I'll feel motion sickness or like I can't sit still and need to stand. I've walked out and waited in lobby for the past 3 movies I've gone to. 
 

Going out to dinner with my wife is a hit or miss thing. Sometimes I'm fine, other times we'll order our food and then as I look across the table, the background behind her will cause me visual problems. Moving TVs, waiters or just anything will make me feel sick to my stomach. 
 

Talking to more than one person at a time (which involves moving your head back and forth to whoever is talking) is a struggle and requires me to move slowly, really focus and step far away from people. 
 

But I haven't fainted, I haven't actually thrown up and I haven't ran into anything. So I guess that's good!

And for the positive news -- I finally got my CPAP machine and instantly noticed after night one that I wake up with energy, focus and feeling less tired or fatigue. I also noticed my heart rate variability went from low 70s to high 90s in less than 2 weeks. My heart rate when sleeping seems to be the same (58-75) and my blood pressure generally stays in the 120-130 over 80-90 range. 
 

I'm still hitting the elliptical for 35-45 mins a day and not afraid to go for walks or to the store with my wife. 
 

I have my good days and my bad days, but mostly just good days with brief bad moments. I think that's progress. Driving still gives me anxiety and I don't like going to new places or places that I can't alternate between standing and sitting, but I'm trying to keep a positive attitude and focus on the fact that things aren't getting worse and that I hope we find a "cure" to this soon -- again, for all I know, this could be heart related, but it's feeling and looking more and more like it's not. 
 

Lastly, I have a call with the Mayo Clinic scheduled for this week -- they can sometimes find answers to the bizarre and my doctor figures it wouldn't hurt to see if they had anything to offer as sometimes it takes over 6 months just to see a doctor, so might as well get on the "list". 
 

Anyways, sorry for the rant and overload of information, but I wanted to thank everyone again for the comments and for the support and encouragement. I don't think I'd be where I am today without everyone here looking out for me and helping me get the answers to my questions. 
 

Take care

Jer


7 Comments

vertigo etc

by new to pace.... - 2022-05-01 20:50:09

Sorry you are having these problems.  You might see if you have a pinched nerve in the back of your neck.  A little PT/OT stretching might help. 

Of course you are getting drinking enough water daily,  Half your weight in water.  Also keep a food diary to see if you feel worse after eating or drinking something.  Include everything you put in your mouth.  Do include all supplements and medications  and  write down what all is in them..

Mayo should be able to help have heard they are good.

new to pace

Half?

by AgentX86 - 2022-05-01 22:20:46

Half your weight in water???? That would mean a 200lb man (like me) would have to drink over six gallons a day. Certainly that's not what you mean.

That would be all heallthy kidneys could possibly pass and 2ould wash out all of your electrolytes. Look up "water intoxication".

Half?

by MinimeJer05 - 2022-05-01 22:59:54

I assumed he meant half your weight in ounces of water, which I've heard before. I try to shoot for 100 ounces of water a day, which is almost half my weight. (I'm about 210lbs). 

Either way, thank you for the tips! I have started a food journal to go along with the new diet to see if cutting out dairy really does anything (im not one for chocolates or red wine, so that part meant little to me)  

Jer

sorry you are right should be in ounces

by new to pace.... - 2022-05-01 23:54:02

new to pace

Ounces

by AgentX86 - 2022-05-02 00:21:30

That still sounds high unless you're sweating a lot. OTOH, I will lose 3-4lbs (pints) walking warm weather. 16oz in cold weather.

I found this but the exercise part of it looks fishy.

<https://www.gigacalculator.com/calculators/water-intake-calculator.php>

Vestibular Migraines

by Gemita - 2022-05-02 05:28:15

Dear Jer, are you physically attending the Mayo Clinic or do you have a telephone consultation with them this week?  I am unclear from your message.  Either way, I hope you receive some new information that can lead to an effective treatment plan.  

The human body can be frustratingly good at hiding the true nature and cause of many conditions until they are well advanced, so it is important to continue to listen to your body and to convey any new or worsening symptoms to your doctors as soon as possible.

When you have your in person or telephone consultation with the Mayo, remember time will be limited and getting one or two important questions answered "fully" might be more valuable than perhaps trying to cover too much and coming away feeling disappointed.  With your symptoms my main concern would be for your safety and the safety of others, particularly when you are out in public (or driving?).  Did you ask whether your symptoms could be related to your heart valve surgery prior to your pacemaker when you first started noticing symptoms, since headaches/migraines following heart surgery are not at all uncommon.  Maybe a question for the Mayo who no doubt have seen this all before?

All that remains is to wish you well.  Remember time can be a great healer too and you have plenty of that to look forward to. 

Gemita

by MinimeJer05 - 2022-05-02 14:53:19

Thanks for reaching out -- the Mayo consult was over the phone, but they quickly transferred me to a cardiac team that will be reviewing all of my medical history and reaching out for next steps in 1-3 weeks.

Not sure what will come of it, but figured it's best to get the ball rolling then to sit around and wait for 3 more months.

I did mention the heart valve surgery and then filled them in on everything that has happened over the past months -- they are going to look at it first from a cardiac standpoint and then will work their way towards eliminating whatever else they can.

Curious to see what they find, if anything!

Jer

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