Hi! Another new person here; dizzy and stressed.

[Carissa]

Hello, everyone!

I am incapable of being brief, so please excuse my verbosity here. I have a history of fairly minor migraine, going back about 20 years now (mixed-tension migraine, my NP said), easily controlled and rarely more than annoying. The times I was wiped out in bed for hours at a stretch were very rare, thankfully. Mainly I’d just get light-headed, spacey, and very tense in my neck and back, frequently accompanied by photophobia and head pain, but not always. Maybe an average of 12 migraines a year, too, so it really wasn’t bad. No medication needed. Then in mid-April of this year (I think; my time sense was murdered and buried in the back yard by this god-awful brain fog) I developed a bad case of shingles. Uncomfortable, yes, but I knew it would end so I just got through. My husband was able to fill in when the nerve irritation got too bad, especially when it came to cooking for and managing our 6 year old twins. And when it was over I had one glorious day where my nervous system worked as it was supposed to. Then… it just went crazy. I had two days of increasingly bad dizzy spells and then I was just laid flat one morning over breakfast pancakes, and it didn’t stop.

For two weeks I had persistent, active vertigo and could barely get out of bed. I was on medication to control the nausea and was just slightly more useful than your average house plant. I couldn’t look at my kids because they were just constantly moving and it made me overwhelmingly dizzy when they would gesture or shift their feet all the time, and there were multiple times when my husband had to intervene because I just couldn’t process what they were saying anymore or became overwhelmed with the constant auditory and visual stimuli and had to decide between yelling at them to just STOP or bursting into incoherent tears. I hated myself a lot. They had already been without normal mommy for a month with the shingles, and now I had trouble being around them for a new, much more confusing reason. At least with the shingles I could show them the lesions and explain that it hurt to be touched. It was harder to explain that my brain was being overloaded because of something as abstract as “vertigo.”

Eventually I was able to walk around more and vaguely function. You know, fold laundry sometimes, cook sometimes, that sorta thing. I moved through doctors quickly, each one helpfully crossing off possibilities and then passing me on to someone more knowledgeable. After about 2 months I got the formal diagnosis of VM, and my neurologist says that from what she can tell from my history I was actually suffering from chronic migraine for a while, probably years, and hadn’t realized it. Joy. I started nortriptyline, vestibular therapy (the only reason I am able to function at the level I am currently, which I know because if I miss one of my 2x daily exercise sets I start to backslide noticeably), and cut out the short list of common triggers I was given from my diet.

I got better, to about 90-95% normal, but I backslide frequently, had to start a second medication a little over a week ago because I’m still not where the neurologist thinks I should be, and have picked up a second physical therapist (to work on strength and flexibility in my neck, because there seems to be neck involvement somehow), and have an appointment in mid October with a neuro-optometrist (I didn’t even know that was a thing!) because my new PT thinks my eyes may also not be tracking properly anymore.

I also bought a copy of “Heal Your Headache,” and have tried to start following the dietary recommendations there. But I am feeling very overwhelmed and stressed. My daughter, when she was 3, was diagnosed with a metabolic disorder that requires daily medication and dietary restrictions too. Those restrictions, like the ones for migraine, are not obvious and intuitive (she needs to avoid high copper foods) and requires careful balancing. She, at least, is thrilled that I now have to avoid chocolate and nuts like she does, and also that for once she can eat something someone else in the family can’t (pizza in this case; which we make at home every Sunday), but there are a lot of other things that are polar opposite requirements in our diets now. Add to that my husband’s nightshade allergy, my son’s refusal to eat leafy greens (except for small amounts of raw spinach sometimes), and the fact that my kids are 6 and therefore go through frequent picky phases… and I just want to lie down and give up. I won’t, obviously, but that’s how I feel. Ya know, I had thought my days of crying in grocery stores and stressing out over “safe” and “unsafe” foods were behind me. I guess not.

It doesn’t help that 3/4 of my current diet is out and that I can now safely say that one of my triggers is a drop in blood sugar levels (I’m not diabetic so I’ve never really considered my food’s glycemic index before). Got a migraine the other day after eating a home-made hash brown, and yesterday from a “migraine-friendly” white flour biscuit I made. I always knew too much sugar would get me on an empty stomach, but my sensitivity has gotten ridiculous. I know there isn’t any choice BUT to figure this out, but I honestly have no idea how it’s going to happen.

Anyway, that’s where I am right now. Most days I can focus on the positive, but today and yesterday have been rough. Just reminding me how quickly my life can be snatched away again, and how awful I can feel sometimes because of this condition. So I figured that rather than stare anxiously at my (mostly blank) meal plan or totter dizzily around my house I would look into online support networks. I’ll feel better tomorrow, and I have been seeing a therapist for over a year now anyway (we learned last year that my daughter may have another disorder as well, and the options of what it could be include some that are untreatable, painful, and probably fatal if she is developing them young; but we won’t know what she has, if anything, for months or even years, until she develops more symptoms, so dealing with that particular Sword of Damocles at least gave me an at-hand support network for this, so… silver lining I guess?), but today I’m pretty low. I probably shouldn’t post an intro story when I’m feeling low, but, hey, I’m sure dumber decisions have been made before, yeah?

Anyway, thanks for reading my novella, and maybe I’ll see you all around the forums.

Cheers!
Carissa

[Onandon03]

Hi and welcome. I always work on the ‘strike while the irons hot enough’ principle personally so if the spirit moved you to start just now irrespective of mood why not. I read your post through. At least you seem to have held on to your sense of humour which should stand you in good stead. You appear pretty positive in outlook which is brilliant, self motivated towards finding a solution, already have a diagnosis, some sort of a treatment plan and a wide range of therapists on hand all of which auger really well. Not really sure what I can say that would help you further at present. MAV tends to be both a rollercoaster and a long haul but you seem to be moving along the right path already. Everything you have mentioned is typical for the condition. It regularly kicks in after some trauma or illness in your case the Shingles. The progression from relatively mild migraines to the complete knock you off your legs attacks. All very much of a pattern Many others find migraine diets difficult due to dietary restrictions of other family members. It certainly complicates things for many though maybe yours is a new extreme. Could get tedious that’s for sure. Might help your further understanding to know that VM is described as a migraine variant balance disorder and that all auditory and visual and other sensory symptoms are the result of something called ‘Central Sensitisation’ (separate thread refers, use Search facility to locate). This oversensitive state include such things as increased sensitivity to medication, light, noise etc, etc and that such can occur 24/7 and not just during a migraine. Possibly may include your increased sugar sensitivity however there are other possibilities linked to ears as both salt and sugar can affect ear pressure which is why they are restricted in Menieres treatment protocols and many MAVers experience the same problem.

Do fully explore the site. There is plenty to read and the Search facility provides excellent resource material. Support wise I doubt you could do better elsewhere. If you do decide to stay with us might be good idea to start up a Personal Diary as that’s the easiest and quickest way to build a resource for future comers. Helen

[Onandon03]

Incidentally, just for the sake of completeness, what was the ‘second medication’?

[Carissa]

Sorry, I was blanking on the exact name at the time and decided it wasn’t worth the effort to walk across the kitchen to go look at the bottle. Probably because I remembered that the medication name ended in “-lol” and that my husband and I giggled about that at first like the mature adults we are. I think I needed that memory’s tiny amusement right then.

Anyway, the second med I started is called propranolol (10mg 2/day; taken on an empty stomach). I no longer feel nauseated by it, which is good, but it really doesn’t seem to have had much of an effect yet. But we’ll see what the neurologist says when I see her in October. We had to raise the nortriptyline (now 25mg 1/day, which seems to be low from what I’ve seen?) a few times to see any benefit, so it may be the same with the propranolol.

[Carissa]

Thank you, @Onandon03, for the wonderful info! I knew a bit of what you’d said (I tend to be a voracious researcher when it comes to things like this, but my tolerance for screens is basically 0 when the dizziness flares up and is pretty low still when it hasn’t, so I haven’t been able to read up as much as I normally would have by now), but I hadn’t yet come across the term “central sensitization.” I am slowly trying to dig my way through the site, but I will jump on that term right away. I’ve had problems for years with this strange thing I do where I almost… shut down and fold into myself for days to weeks at a time. I can’t control it or really predict it and I feel so distant and unreal when it happens that I wind up dropping every ball I’m juggling at the time because everything just suddenly feels so impossible to cope with. We always assumed it was related to my anxiety, since the worst episodes always follow times of stress, but I’ll get them during normal times too. I’ve never had a therapist who could explain them to me, but the guy I’m seeing right now has seen a few and talked to my husband about them, and he says it almost looks like someone shutting down in response to trauma, except that there is no trauma. What you said made me think of that. I’m not saying that these episodes are related to my migraines necessarily, but it is interesting. Huh.

Thanks!
Carissa

P.S. I just realized you had written both replies. LOL, sorry about that! I would have put both responses in the same post then myself.

[ander454]

@Carissa

I always knew too much sugar would get me on an empty stomach, but my sensitivity has gotten ridiculous

That’s one of my worst triggers as well. And after a full meal sugar is just fine… The worst trigger for me is probably coffee.

I hope you get on okay with the diet. It is tough but I think its worth it while you are recovering.

[Onandon03]

Laughter’s the best medicine they say. As to the Propranolol. Yes I have seen people writing up that they had had success with very tiny doses of Propranolol such as you are taking and ditto
Amitriptyline but I suspect those people are in a minority. Even the PIL in the pill box states the migraine prevention starting dose as 80mg/daily. Also although migraine and MAV prevention drug treatment regime are identical IMO MAV is more difficult to get under control. My opinion would be backed by the fact that the so called experts actually say the headache is easier to treat than the dizziness. In addition it would also stand to reason that a chronic condition would be more difficult to control than an episodic one because surely the very chronicity of it all tells us the brain/body has lost, albeit temporarily, its ability to reset itself. I stress I am no medic just an avaricious reader, like you, though likely to be a good few years ahead when it comes to researching vestibular stuff having had many more years to practice. Propranolol is excellent at controlling headaches and can sometimes take effect quite quickly. It’s worth persevering. Don’t get frustrated waiting because increases have to be carried out gradually anyway. I took 10 weeks to attain a reasonably high dose. You will find many Propranalol references on here. Try my diary. If trying to reduce screen time @Jools recent posts might give you done clues.

When it comes to lack of Screen Tolerance That’s another very common one. In fact this site abounds with MAV-striken computer programmers and computer gamers. Personally I blame Evolution. She’s just not keeping pace with modern life these days it seems. I spent too many decades staring at computer screens too and I was totally intolerant of screens for many months. In fact for a long time I was totally intolerant of daylight itself and spent about 18 months living like a mole.

When it comes to the strange thing that you do, all that shutting down I would suspect it’s all MAV related. After all why should you be unlucky enough to get more than one seemingly unexplainable and weird condition at a time anyway? Check out ‘Brain Fog’ and ‘Derealisation’. See which seems more familiar of better still get your husband to do so. He will have a better idea of how you differ through those times from usual. Whichever it turns out to be eventually the prevention regime should help. Don’t worry if you cannot pin it down. Treatments the same is it’s MAV related

[dizzy3]

just wanted to say that it is good to come here on the bad days, because that is what we are here for.
Give meds sometime, it takes several weeks to start feeling symptoms going down.
On the mom side of things, I have a 3 year old and I have been a dizzy mom for most of his life. It was hard at the beginning, but with time and meds and changes in diet etc, I am able to enjoy him fully. Sometimes is uncomfortable, but still doable. I hear you with all your stresses with your kiddo’s health. It is hard to be a mom. Sending you love.

[Carissa]

Thanks, @ander454; I very much hope it will be! We mostly eat whole and organic foods in my household anyway, but sadly I could not find a bread that did not use a form of possible-MSG to make breads, so I am actually trying to make my own starter to bake my own bread. It’s 2 days old and counting! Yay! Anyway, gives me something to do while I’m off work (I work 100% on the computer, so… yeah, not a great match right now), and let’s me pretend I’m cooking along with The Great British Baking Show! While also helping me hopefully feel more in control of the whole thing. Becoming a bit less scary, just very slowly. LOL!

Also, truly, good to know it isn’t just me with the sugar. I knew before that some people had problems with processed sugar, but I only recently learned about the effects of a sudden drop (the process of how that happens is actually fascinating!). As for coffee, I guess I’m lucky in that I never took up the habit, and I kicked caffeine entirely last year because it took me more than a day to sleep right again after (so many signs, looking back…). Thanks for replying!

• Carissa

[Carissa]

Thank you so much, @dizzy3. I was almost scared to search for posts on parenting with VM/MAV. I knew they would probably make me feel better, but it just hurt a bit too much to jump in yet. It’s been tearing my heart out, especially when the kids adjust what they’re doing to “take care of mommy” or tell me they wish I wasn’t dizzy all the time. My son asked me yesterday at breakfast when it would go away, and I had to do my best to explain it wouldn’t, it would just slowly get better but would always be with me. He was so sweet about it and handled it well, but I hate having to put them through the uncertainty. Although, my daughter, resilient little thing she is, has started making games out of helping me (like looking out for rocks on the ground when we go for barefoot walks, since I have to keep my eyes up) and is STILL thrilled that she has a “no chocolate” buddy. I’ll take it.

• Carissa

[Carissa]

@Onandon03, you are certainly more ahead than I am, yes! And I very much welcome the advice. I will definitely stick with the propranolol, don’t worry; practically everything I have come across that discusses medication makes a point to mention how long it takes to have an effect, so I am braced for the long haul. I have told my family to be ready for this to take a year or more to really shake out into a “new normal” for me. I just don’t like it, but that probably doesn’t shock anybody here!

I will check out @Jools’s posts. My two main hobbies, by FAR, are reading on my ipad and playing video games (computer and console) and I have had to give up the latter entirely since this started. It’s been killing me. I realize I may never be able to get the games back, but it doesn’t mean it isn’t worth looking into or tentatively hoping for (though for now my vestibular PT has absolutely banned me from testing out my tolerance for them even on good days).

And finally, re: the strange thing… we’ve actually been doing exactly that. My husband is still mostly sold on the anxiety angle, but we’ll see. If I get this seemingly endless VM under control but don’t see any improvement in the weird withdrawal episodes then that is an answer right there, as is the reverse. And don’t tempt fate by invoking the odds! We have a running joke in my family that if someone is going to be the medical oddity, it’s going to be me. I’m always the one to come down with the weird thing or to get a normal thing that presents or develops in a weird way. LOL!

• Carissa

[Onandon03]

If your efforts at making your own starter refer to Sour Dough which I assume they do that process is fermentation taken to the extreme and I would certainly wonder how that squares without the migraine diet sheets, most particularly John Hopkins, which state nothing fermented. Agreed all yeast risen bread is result of fermentation but! Fermented foods particularly red wines, pickles, and fresh breads are off many migraine diets. I use ordinary fast action of dried yeast without issue but I know I react to fermented foods most particularly red wine and pickles. Bake all my own bread and yeasted goods and have done for years. I never eat bread same day its baked and I avoid Sour Dough totally. MSG’s another strong trigger although it impossible to get anywhere near total elimination from the diet however hard you try and I imagine the stress of trying probably negates any benefits anyways.