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How do you know when there is something else going on?

So I’ve battled the dizzies for about 10 years now, didn’t know they were migraines until 3-4 years ago. Only treating with Propranolol which also helps control the high blood pressure. My symptoms have always come and gone, not completely ever going away but some stretches of time when they definitely put me on the couch for a while until they ease up a bit.

The past month or so the dizzies seem a bit stronger? I’ve had at least 3 episodes while I was sitting at my desk at work where a wave of dizziness comes from nowhere and I feel like I could fall out of my chair, but not just a quick wave, like a rush that holds on for a minute or 2. After which my anxiety is super high and I am quite off balance for the rest of the day. It happened last Monday and my husband had to pick me up and drive me home and I slept for a good 4 1/2 hours. It happened again today and I took an Ativan to help relieve the anxiety and I was able to stay at work, but took me a few minutes to be able to function again and now I’m just not feeling very sharp, feeling fuzzy.

Also, after having these intense episodes I am very exhausted for the rest of the day. Is this my VM getting worse? Are these panic attacks? Am I on the verge of having a heart attack?

I will also add that several years ago I was checked out by a cardiologist, given an all clear sign. And last April I had an incident with a jet ski that landed me in the hospital and had to have a stress test done before I went home and that cardiologist said I passed with flying colors. But I am 50 and overweight and I just wonder how I will know if something else is ever wrong as I’m always attributing my issues to VM. Anyone else relate?

Here’s my non-medical degree two cents. Have your heart checked. That will make you feel better about your heart.

For a lot of people, MAV tends to ramp up over time. I went from intermittent to low level background to disabling acute over the course of first 20 years then gradually increasing for a few years and then constant and a big deal starting with a brainstem aura and migraine combo in September 2017 that rolled and recurred for five days until I got a migraine IV cocktail in the ER. The migraines and dizzy never really left after that. Dizzy, palpitations, anxiety are all VM symptoms.

After a bunch of med trials, I found a combination of prophylactic (Effexor) and rescue meds (Fioricet, meclizine, promethazine and benedryl) that allow me a fairly normal existence at about 95% a lot of days. It took about a year to get from acute back to low level background.

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Yes, it’s very common to worry and suspect other conditions, and you should always consider other conditions for sure - just be sure to do it in a reasonable way that doesn’t let anxiety get the best of you. It does sound like VM/MAV with some anxiety/panic component to me. Sounds very similar to my episodes a couple years back and like many other stories on here. Sorry to hear you are getting worse episodes lately, it’s really awful and scary I know.

Is it possible to try a restricted migraine diet for a while to see if things get better?

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Thanks flutters…sorry to hear you’ve been thru the wringer!

I’m planning to start the migraine diet again soon. I did it years ago and did not notice a difference. I quit Diet Coke 2 weeks ago and I’m starting on Zoloft this weekend, and I don’t like to make too many changes as once. Maybe migraine diet in March.

I’ve had a lot of years to get my zen going on this one.

And, I do have quite a few co-morbid conditions (Vestibular Paroxysm, an atlas that likes to slip out of place, PCOS, Endometriosis, TMJD, Hypothyroid, High BP plus some that just came along with getting older and accumulating damage). My neurologist started by checking every autoimmune disorder, virus, bacteria and cancer signal she could. She stopped short of genetic testing, which is too bad, she might have caught the methylation cycle issues. Fortunately (?), my sister is also a hot mess, so we caught the genetic testing on her dime.

Get yourself a nice check up with blood work to rule out whatever else might be giving you fear.

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Just had blood work done this morning. And I saw my doctor last Friday. I’m currently seeing a homeopathic doctor who seems to care more than the traditional doctors.

It is, most likely, just manifestations of VM. There’s a pretty lively debate here about what causes VM, and probably there is more than one mechanism. I look at it from the more recent scientific literature which suggests the brainstem, hypothalamus and thalamus are involved along with some not great biochemistry and some sensory confusion. What does that mean? Really primitive parts of my brain that handle some really basic functions (heart rate, digestion, balance, pain input) are messed up. It takes a long time and a lot of personal experimentation to find that balance again. Given my genetic history, my best hope is to manage my lifestyle and triggers to the extent I can, medicate when necessary and hold the line. Read the 2014 survival guide. That should help.

VM Survival Guide 2014

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This !
Health anxiety is huge. I have imagined everything from seizures, perilymph fistula to Multiple sclerosis. Don’t let this suck you into a vortex.

Eat healthy, maintain weight, exercise within reason, find a migraine prophylactic with reasonable relief and endure what cannot be cured !.

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Thanks flutters for posting that link…it’s excellent reading, very informative
Thanks
Karen

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You’re welcome. I really think we all need to start there. I re-read it periodically when I fall off the horse and have to remember how to get back on. Emily

Yes! I feel the exact same way. I too have the same symptoms you are describing. My dizzy spells will come from nowhere while I’m just sitting at my desk at work. It’s so scary. I too attribute all my bad feelings to my VM, but I agree, how do we know that it’s not something else? Sorry I’m not giving you anything to make you feel better, just letting you know that you are not alone.

Hi! Are you able to discuss your concerns with your doctor?

Before I had my MAV diagnosis, I too suspected horrible things like MS. I also wonder sometimes whether I’ll know the difference if something else comes along that has similar symptoms.

My experience is that the symptoms can go up and down. I hope that you can get some peace of mind.

For me it helps to remember my likelihood of getting two rare disorders - for example VM and MS at the same time is about as likely as being hit by lightning while being attacked by a shark.

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I might have preferred the shark! Well, as long as it was a tiny one. I have bilateral SCDS, MAV and had a brain aneursym.

So my doctor wanted me to try Zoloft. I took 2 baby doses and was so dizzy I could barely walk down the hall to go to the bathroom. I don’t have a few weeks to try to deal with those kind of side effects so I stopped taking it. My doctor is open to discussing other things, and I’ve asked her if we can bump up my Propranolol since that seems to be the only thing I can tolerate. Still waiting to hear back on what she thinks about that.

She also wants me to start taking Metformin. I’ve always had a high fasting blood sugar (108-122) but I thought my last A1C was pretty good at 5.3.

Zoloft did that to me too.
Wishing you well.

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Ok, so that’s a disaster. How are you doing now?

I just live with my symptoms. My life pretty much revolves around them. I realize that it isn’t much of a life because I can’t work or do much of what I used too (and I really struggle with that) but it’s still a life. That’s what I tell myself on the really bad days. And, my cats seem to appreciate me :slight_smile: .

Right now I am trialing the once a month injection of Aimovig for the classic migraines. (I wrote about that on another thread.) It seems to have reduced the classic painful migraines but ramped up the MAV symptoms. I’m only on my 3rd injection so this is still in progress. I’ll try it for another 3 months.

Thank you for asking.

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Good luck Molly. Find the positive wherever you can. There is always something we can contribute, even if it’s just one clear hour a week.

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