Guess I Don't Belong Here

I’m starting to come around to the reality that I really don’t have MAV. I was actually hoping I did, because at least I’d have a roadmap for how to treat this, but my symptoms are just too off course for MAV. Yes, I’ve had rocking vertigo for 4 months, but my most debilitating symptom is progressive slow spinning vertigo. It’s a 24/7 symptom that worsens daily. Also, I have no triggers, no headaches/migraines (other than an occasional one, which is usually the result of neck strain), and my symptoms do not change or worsen during PMS. Not at all. It seems to have no impact on how I feel. I also didn’t start out with a big bang, like most people describe, and I’ve never experienced anxiety because of this, which almost everyone here has suffered from.

It’s clear that constant spinning vertigo isn’t a symptom of MAV, or MDdS, which was the other idea my doctor had. This means I’m back to square one, with terrible neuro symptoms and no idea what’s causing them. I’ve had every test under the sun, and at this point who knows what else can be checked. Maybe I am just nuts, or maybe I do have anxiety that’s manifesting as 24/7 vertigo. I don’t have any damn clue.

Either way, I’d like to thank all of you for being so supportive, for listening to me complain, and for being to loving. You’re a great group of people, and I wish you all the best. For those of you in the U. S., have a blessed Thanksgiving.

Guinevere

Good luck finding and answer Guinevere

Kinda sounds a lot like my experience. Don’t rule MAV out I’ve had maybe 2 migraine headaches in my life.

Have you had a lumbar puncture?

— Begin quote from "Guinevere"

I’m starting to come around to the reality that I really don’t have MAV. I was actually hoping I did, because at least I’d have a roadmap for how to treat this, but my symptoms are just too off course for MAV. Yes, I’ve had rocking vertigo for 4 months, but my most debilitating symptom is progressive slow spinning vertigo. It’s a 24/7 symptom that worsens daily. Also, I have no triggers, no headaches/migraines (other than an occasional one, which is usually the result of neck strain), and my symptoms do not change or worsen during PMS. Not at all. It seems to have no impact on how I feel. I also didn’t start out with a big bang, like most people describe, and I’ve never experienced anxiety because of this, which almost everyone here has suffered from.

It’s clear that constant spinning vertigo isn’t a symptom of MAV, or MDdS, which was the other idea my doctor had. This means I’m back to square one, with terrible neuro symptoms and no idea what’s causing them. I’ve had every test under the sun, and at this point who knows what else can be checked. Maybe I am just nuts, or maybe I do have anxiety that’s manifesting as 24/7 vertigo. I don’t have any damn clue.

Either way, I’d like to thank all of you for being so supportive, for listening to me complain, and for being to loving. You’re a great group of people, and I wish you all the best. For those of you in the U. S., have a blessed Thanksgiving.

Guinevere

— End quote

Hi Guinevere,

I don’t want to convince you that your problem is or isn’t migraine but the reality is, it may be. Your symptoms are not way off course at all.

Spinning vertigo is possible for migraine.

24/7 vertigo is possible for migraine.

Triggers are not required. Personally, the few I have are inconsistent (i.e. they don’t trigger me all the time).

You mention neck strain and headaches - your neck strain could be the symptom rather than the cause. And headache is definitely not a ‘requirement’ of a migraine diagnosis.

Migraine symptoms don’t necessarily get worse at different stages of a woman’s cycle (mine don’t).

You say you didn’t have a ‘big bang’ - so what, I never did either. However, when I re-read your earlier posts you did mention that ‘all hell broke loose’ a day after an unpleasant experience on the swings. That could be a ‘big bang’. You also mentioned that in the months leading up to this you’d been under an enormous amount of stress. While stress isn’t ‘required’ to set off migraine it sure is common.

The fact that you have had every test under the sun and nothing has shown up is a good thing, in that it means lots and lots of things have already been ruled out. Migraine has no definitive test yet is extremely common, especially for a woman of your age so it is highly likely that with your symptoms you may have it. I wouldn’t throw it out as a possibility just yet. Especially as you are only a few days/weeks into trialling diet and lifestyle modifications (the natural route) and I know that while you’d really rather not take medications, if it comes to it there are a huge number out there that are very effective for migraine and that’s without even going anywhere near the SSRIs that you had a rotten time with. If it is anxiety rather than migraine, or anxiety is a contributor there’s a whole range of non medication things you can do, like cognitive behavioural therapy, meditation etc that can help.

There is definitely no need yet to give up and resign yourself to continuing on in the miserable way you are now. Hang in there!

Victoria

i know this is a controversial subject on this forum but have you been tested for lyme? do u have other neuro symptoms or chronic pain? lyme can be difficult to diagnose so its crucial to get to a good dr.

Hiya
I really think you shouldn’t rule it out just yet you haven’t even tried any meds sometimes diet just isn’t enough might be worth a go you have nothing to lose, I mean non of us are doctors but if there not coming up with any ideas give it a go.
Shenayx

Thank you, everyone. And Victoria, I really appreciate the time you took to look into my previous posts before writing to me. When this first started, I did describe it as when “all hell break loose”, but had I known at the time that things would progress as they have, I would have known that true hell hadn’t broke lose yet. Things have certainly progressed, which is why I described my symptoms as progressive, as opposed to a big bang, in which the worst of the symptoms presented right away, all at once.

It’s not that I think you’re all wrong, or that it’s impossible to have MAV with my symptoms, but I’ve poured over hundreds of posts on this site, and it’s a bit discouraging that I can’t find others with my symptoms, with the exception of one person, who hasn’t found relief with meds. I even found a couple posts in which someone with slow spinning vertigo was told that they probably didn’t have MAV, as spinning vertigo isn’t the typical presentation. That’s when it really hit me that I might be barking up the wrong tree. I’m just missing so many of the symptoms and triggers that so many discuss here, but I do appreciate you sharing your experience with me, Victoria. It leaves me feeling slightly more hopeful that I might be on the right track.

As for the questions about Lyme Disease: no, I do not have chronic pain, or even episodic pain throughout my body, or anywhere else, for that matter. I did have a bull’s eye rash about 10 years ago, and it was followed by a month of illness, so I obviously thought Lyme might be the culprit, but I’ve had about 3 tests and they were all negative. I’ve read a lot about Lyme Disease, and I’m not sure I fit there, either. I’m missing a lot of symptoms you’d expect if Lymes was at the root of this. As I said, MAV and MDdS were my Neurotologist’s best guess. As I said in another thread:

“I really wish there was a clear-cut answer, or that my symptoms would be more specific, so that I could have more confidence in any diagnosis. When doctors say it’s probably MAV, but it could be this, or it could be that, or it could be from my incidental, non-symptomatic cerebellar ectopia (Chiari Malformation), I don’t know what to think. They all agree that Chiari is a very unlikely culprit because my CINE (flow) study is normal, and I don’t have the hallmark symptom of occipital headaches. Also, I’ve always passed all my Neuro exams with flying colors. Because my Chiari is so slight, and my CSF flow is normal, no one will touch me…surgically speaking. Almost every Neurologist, Neuro-opth, Retinal Specialist, and Neuro Surgeon I’ve seen in the past, plus the one Neuro-tologist I saw since the vertigo began, thinks I suffer from migraines. The only problem is: Chiari symptoms are very similar to migraine symptoms, but since they use the flow study as an indicator for surgical candidacy, I’m not considered to have a surgical/symptomatic Chiari. Chiari impedes CSF flow, and that’s when surgery is required. If the flow is normal—as is the case with me—surgery isn’t wise, as there’s no flow to restore, which is the goal of decompression surgery. I have seen a couple doctors who have laughed at the migraines theory, because, in their opinion, there’s no way in hell someone would suffer from constant, 24/7 symptoms for years.”

What do you all think about trying 5-HTP? I know that it acts as an SSRI, but far, far milder, and without the really harmful side effects. Just a thought. I’m not depressed or anxiety ridden, but if SSRIs can help the vertigo, I wonder if it’s worth a shot.

Thank you again. Your support and thoughts mean more than I can convey. Happy Thanksgiving.
xo