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BPPV --> iVM = a dozen doctors, a year of dizziness, a potential diagnosis?

Hello! Longtime lurker. Thank you so much to this community for EXISTING. My searches and deep dives have made me feel far less alone.

My brief history…
At age 22, I got a quick bout of BPPV. Once I was diagnosed, learned about the Epley, bippity boppity boo, all better. My crystals would escape every year or two but I easily controlled it with home Epleys. Episodes became more frequent as I aged (now 38), coming every 3-6 months. All easily controlled without lingering impact.

UNTIL February 2020. I turned over in bed one night, and felt the classic BPPV room spinning, and associated nausea and sweating. But I couldn’t seem to get this episode under control. I did all sorts of maneuvers. So I went to an ENT. And then another. Finally found one that did a maneuver that seemed to work. But I never felt “right.” I had lingering dizzy sensations that I’d never felt before. Sort of like…When I moved my head, it took a while for my brain and eyes to catch up. I felt exhausted. I couldn’t concentrate. I couldn’t be present in my life. I’d be standing there and get an internal “quick spin.” I often felt headrushing sensations (like when you stand up too quick), only I was lying down or completely still. It’s absolutely still positional (I am not triggered by my environment), but it’s not BPPV, either. My ENT chalked it up to “residual dizziness” but I knew that wasn’t the whole story. These sensations lasted for 6 weeks. Two weeks after they went away, another episode of BPPV struck. And then the lingering dizziness NEVER CEASED. I had episodes of BPPV every 8 weeks, but the dizziness between episodes was the worst part. I saw so many doctors (neuro, ENTs, cardios, PT, etc, etc). Got many diagnoses. I first heard of VM in July, and went on a strict diet. The zero caffeine helped instantly, but only helped a little.

What’s happening now
Finally I found Drs. Carey and Schubert at Johns Hopkins (a far drive from my home, but worth it). They confirmed a probable “complicated and atypical vestibular migraine” with possible subclinical BPPV as well. I am begin managed by Dr. Gold at Johns Hopkins. I am on 12.5mg of propranolol (this was prescribed to me for heart palpitations by my cardiologist) and 30mg of nortriptyline. I just increased the nort from 20 to 30 (about two weeks ago) and I AM VERY EXHAUSTED. I feel sort of like a zombie. I’m not sure if that’s normal, but I’m hoping the side effect will fade. Most importantly, I haven’t really seen an improvement in my symptoms. I am doing vestibular therapy and cognitive behaviorial therapy.

I am still experiencing all of the everyday dizziness as described above. Also, when I lie flat (or side lie/Dix Hallpike), I feel a spinning inside my head for a few moments before it settles down. I have good (nearly symptom free days) and awful days.

Known triggers: my period and caffeine. I’m still on a strict diet, and haven’t felt stable enough to introduce anything yet.

I am able to function. The “invisibility” of this condition is the hardest part. Sure, I can talk to people, but long conversations make me dizzy, and I have a hard time focusing on what they’re saying. Sure, I can play with my kids, but it requires so much energy, I often have to nap afterwards. Sure I can cook dinner, but I feel like sh * t, so I’m going to be grumpy about it. I power through each day, but VM takes a massive toll on my quality of life.

I had gone on propranolol in 2019 for a heart arrhythmia, and it’s only later did I realize that I didn’t have an episode of BPPV that entire year. So maybe I’ve always had migraine, which triggered episodes of BPPV?

UGH THIS IS SO HARD. I often feel disheartened or deflated. I am trying to summon the resilience to endure this process. WHAT IS WRONG WITH MY BRAIN?! I have two young kids that need me to not only be functional, but energetic and fun and patient and happy.

Thanks in advance for any input, advice, words of encouragement, virtual high fives. This week (/year) has been a hard one. - Brittany

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Hello and welcome. I’m more a regular reader than poster but the part about the young children and being shattered hit home. I sometimes feel I can’t really be the full dad I want to be but I try my hardest. When I’m having a bad day my patience and mood can be poor to say the least as its all just a bit to much. Like yourself some days I feel almost perfect then the next absolutely miserable. Its so annoying not knowing why.

How are your family, do they understand? Mines have been good but I don’t think they fully get it and probably never will.

Welcome Brittany to the home of the ‘unique, complicated and atypical’. As we often say we’re so sorry you’re here but so glad you found us! We are a great family to be part of.

You will get better. It won’t be perfect but we all eventually claw our way back to a good quality of life. Unfortunately that’s generally an 18-24 month process and is unique to each of us. It’s less adventure than long slog odyssey. All good hero’s journeys are. Amazing how much you can learn about yourself in that time.

You are welcome here. We understand you. We see you.

Emily

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My family understands in the big picture. They’re great, actually (inasmuch as preschoolers can be be great while simultaneously demanding five things from you). But like you said, it’s hard for them to fully “get it.” I’ve asked for my spouse to come to some of my key doctor’s visits, so he can be in the thick of this journey with me. But on a day to day basis, no, they can’t possibly understand how it impacts my every moment.

I have experienced a lot of self-loathing thanks to VM this year. I’ll fear I’m a terrible parent, I’m lazy, why I can’t I just do XYZ, my kids will think I’m a sickly, weak mother, I expect too much from my spouse, etc, etc. My brain thinks crazy things. CBT has helped with this some.

Thanks for your response. As my husband tells me, you probably aren’t a bad parent if you’re afraid that you might be a bad parent. :wink:

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@flutters Your first sentence made me laugh. Thanks for that.

Even having a number to cling to (18-24 months) is enough to give me hope. “Slog” is the right word. The emotional/mental part of this journey was not something I ever could have anticipated.

Thanks,

Brittany

Honestly, the emotional and mental part is the worst aspect of it. If you’re not already in therapy, find yourself a good therapist who’s dealt with chronic illness. Bring your SO.

Hi Britney, urgh how awful for you to have to deal with BPPV for that long to start with, and then this on top!

I feel inclined to also post on here as I too began my VM journey in July after my FIRST BPPV episode which lasted 3 weeks, then was hit by BPPV again in October which began an almighty migraine episode that went on and on for months. Had to stop work early Oct and am just about to start up again in a couple of weeks. Safe to say, I’m terrified of another BPPV attack!

I also have 2 kids who are demanding and I’m currently on a small getaway where they want me to do all sorts of things, swimming, fishing, going on boats … and although I’m doing things, im not the go getter I used to be.

So… you are not alone and I’m glad you’re here. Both of those meds seem to do wonders for people. Keep at it. Most of the meds do make you tired and I’m still struggling with feeling lethargic most days myself, but it’s helped. Good on you for quitting caffeine - a hard job for me. But I did it.

I also self loathe - and often look at people going about their lives so easily and feel that pang of envy and jealousy! And you’re right, you can look perfectly fine, but on the inside that not quite right feeling always lingers. And yes, especially head movements! That’s the worst! I still have nystagmus for god sake and we are mid January!!

Keep posting about your journey. We can learn from others and their experiences as we go through the hard slog. I feel we are similar.

Chin up , Bel

@Belindy
The lingering BPPV and nystagmus is so annoying! It makes it really hard to figure out what the actual problem is…are my crystals still out? Or is this just my migraine brain flaring up? I understand how you feel.

Good for you for going on the getaway and doing all the things! Even though I’m sure it’s the last thing you want to do right now. Your kids will have great memories! :slight_smile:

Quitting caffeine was brutal. But I’m so glad I did it. Has it helped you at all?

Good luck on your return to work!!

What a lovely sentiment. It’s good to know the facility is appreciated and helping others. @turnitaround puts many hours of work into keep it running for free otherwise it would be long gone. And btw small donations towards the actual running costs are always welcomed and I mention that in passing not so much for you arriving as a newbie but just generally for others and lurkers alike.

Your story resonates with me personally. If you read my personal diary you will find I was misdiagnosed with BPPV for 12 years and was given more Epleys than many people get hot meals. I really loved your description. So graphic. Personally I have never believed in crystals falling round in our ears. I cannot imagine it. Where’s the little Marshall to chase them all back into the right place and stand guard to stop them escaping again. Personally I find that unbelievable. That MAV and BPPV co-exist, overlap or are for some strongly linked I certainly believe. Mine is all part and parcel of the same thing I’m sure. Interestingly during my recent/current attack I have had your identical BPPV type experience just as I had at the very start of my MAV years ago and which I haven’t really experienced since. That would seem logical to me because I consider mine greatly hormone related. At the beginning of my M/aV experience all this BPPV type stuff and again now as I think. And at this stage it’s still only as hunch, I may well be moving towards the later stages of MAV.

It’s in a hypersensitive state. This has caused Central Sensitisation.

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Thanks! I am getting anxious about work. Particularly the stress, triggers and waking up early. Not to mention returning with zero sick leave!!

I really cannot tell whether it was quitting caffeine or something else (or a combination of everything) that has helped. I did everything all at once. And still do. So I will continue with everything I am currently doing.

I too am triggered by periods. Fun isn’t it.

Atm, I am trying my best - although my efforts are probably futile, to avoid BPPV. I am taking Vitamin D and trying to do all the following from something I read. It says don’t do these things for a week after the Epley, but also if you get BPPV a lot.

What To Avoid after BPPV treatment (for one week):

  1. Using an electric toothbrush (Tip: You can use it without the vibration for the first week.)
  2. Enthusiastic dancing, such as headbanging or bobbing your head in the car
  3. Shaking your head around vigorously while exercising, including bouncing and jumping jacks
  4. High impact exercises such as running, burpees, or jump squats
  5. Jumping on a trampoline
  6. Using a handheld blender, or mixer with beaters, such as to make cake batter or guacamole
  7. Putting your hand on a blender to stabilize the base or the lid, while you’re making a smoothie
  8. Blowing raspberries on the belly of a baby
  9. Bouncing a baby on your lap vigorously
  10. Sitting or lying on a vibrating mat for a back massage
  11. Sitting on a vibrating massage chair at the nail salon, such as during a pedicure
  12. Holding any kind of vibrating massager or activator tool near your head, neck, or arms
  13. Using handheld power tools, such as a sander, drill, or dremel – This is especially true for certain profession like dentists, jewelers, mechanics, and building contractors.
  14. Listening to extremely loud music or audio, especially through headphones or earbuds
  15. Riding in a bouncy or bumpy vehicle, like a jeep, truck, or tractor – Also avoid riding in any vehicle on a bumpy road or rough terrain.
  16. Gymnastics and tumbling
  17. Diving off a springboard, high dive, or cliff
  18. Cliff jumping – You may want to consider avoiding this type of activity longer than one week for safety reasons! :slightly_smiling_face:

I thought very interesting

That list would apply to most people with MAV and for every single day I suspect. Not just after BPPV treatment.

Whilst I’m mostly recovered I definitely still avoid violent or particularly quick movements of the head.

Even nodding in agreement a lot (eg in a business meeting) can cause a feeling of ‘cognitive irritation’ (which I call ‘brain grumbles’)

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I know right! Can I ask James, do you jog? This is something I’m stopping for the time being to see what happens.

I jogged throughout my MAV. Running for me was always more comfortable than walking (imbalance disappeared). - that’s covered in detail in a separate topic. See https://mvertigo.org/t/vestibulopathic-gait-youre-better-off-moving-faster/2799?u=turnitaround
(The topic is behind a user trust level bar)

I would get increased tinnitus when I hit a bump but otherwise non issue.

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It was not til long after M/aV went chronic I realised I’d stopped nodding/shaking my head in that way decades ago quite instinctively because it made me feel queer. If I had stopped to analyse why, which I never did, I would have blamed my bifocals but now …?

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Definitely could be worsened by bi or varifocals (perhaps eventually habituated for), but I know I had this issue before I had to use them.

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Interesting list that. I can look at it two ways. One really it’s overkill. Sometimes sheer ignorance is bliss and a newbie made aware of all that could well freak out and be ever more frozen to the spot where they stood. Then having been a severe sufferer from the sensory stuff myself I could add in all the other things they have missed off. What for instance about ‘wearing different shoes’? Or did I miss that in the listing?

I well remember being told post my first Epley don’t to perform any movement that in any way near replicated it for 48 hours afterwards.

Best advice relating to that I got from my then GP who I saw post my first ever vertigo attack, which was much like BPPV very brief and positional. He told me never to lie down or go to bed until it all stopped completely! Much like some of the current Covid advice being floated by the top experts, a totally impracticable suggestion. As he also told me he suffered BPPV attacks himself I believed him and tried very hard to maintain that for years. Sitting up on an upright chair 24/7 for up to 3 days is very hard work, sleeping becomes virtually impossible. But I never went to bed with it until ordered to by another doctor years later. What a fool I must have been. Btw it didn’t work, the Sitting Up all through it, I carried on getting more vertigo every time I opened my eyes all through each attack.

Interestingly I have had very little recurrence of BPPV type vertigo since being on meds (over 5 years) until this last month or so slightly pre and much more post my recent attack which started Boxing Day. Ever since I have only once been able to sit up, however slowly and carefully, in bed without some pretty extreme occurrence. Therefore if I could just totally avoid lying down to sleep I could currently pretty much stop it happening. Lots of animals can sleep standing up. Perhaps I just need to jump species?

Hi Helen, Did you get checked for BPPV again this time? That would be interesting if you did have it to see what effect it had on your MAV.

How awful that you had to sleep upright for so long. Yuk! Are you sleeping better now?

We are off topic here. BPPV checks aren’t something readily available where I live in the UK. It’s probably 7/8 years since I last had home visit for an Epley.

I have also been told to sleep at least 45 degrees (and even sitting up). It does help my BPPV episodes resolve faster if I do it multiple nights in a row. But that basically means I don’t sleep, which triggers a flare up in my VM symptoms.

@Belindy
My vestibular therapist has recommended that I do preventative Epleys or Liberatory manuevers. So, once I week in the morning, I do a maneuver 3x even if I don’t have any BPPV symptoms. Her reasoning is this: my crystals obviously slip out easily. But it takes a certain mass of crystals to trigger symptoms. So a few small particles floating around aren’t going to trigger BPPV, but once I hit a certain threshold of loose crystals, I get it. So by doing the maneuvers even when asymptomatic, I am getting all of the small “subclinical” (ie do not trigger symptoms) particles back where they are meant to be, never giving them the chance to amass into something that would cause a problem. I have just begun this approach, so we’ll see how it goes. At this point, I will try anything.

Regarding the list of things not to do. That’s a hard one for me. Because the goal of modern medicine should be that a patient can live a normal life, doing normal activities, and remain symptom free. Yes, that is an idealistic pipe dream, I know. Nothing like a chronic illness to prove the limitations of modern medicine. BUT I want to be able to sleep flat, not think twice about using a blender, exercising, etc. A reasonable lifestyle modification is one thing (like, ok, I’m happy to not use an electric toothbrush). But being so self limiting all the time for the rest of my life would be awful–just like VM 24/7 is awful. If I worry about all the things I can’t do, VM is taking up space in my brain even when I’m symptom-free. So, it’s kind of like, pick your poison. Right now, I’m being careful. I’m helping my brain heal. I’m hoping that won’t last long term, but I suppose I would rather make that sacrifice than continue to be dizzy all the time.

Please may I enquire. Do you have a link to the text that states that please that you can post. Everything I have ever heard and not solely connected with MAV relates much more towards ‘best possible in circs’ type outcomes. And when it comes to preventatives a 50% improvement in severity, frequency and duration is considered Best Possible and a great success although many myself included have done far better than that on a regular basis.