Newbie, glad I found these forums, it's been a whirlwind

elle84 · May 24, 2020, 1:51am

I’m feeling a bit deflated but glad to have found this community, for the last few months I have found myself digging through your message boards trying to understand what might be going on with me.

In short, mid 2019 I had a violent vertigo attack - the world spinning around me without stopping. It was gone by morning and I was fine. A month later it happened again but I threw up for hours from the sensation/nausea. I started having violent attacks every 12-21 days that would last 2-4 days and then I would have a week or two of relief in the middle. At this point, my issues are chronic but milder than last winter. I haven’t had a full intense vertigo episode since February but I have issues with motion and balance daily. Sometimes my nystagmus kicks in along with intense nausea but not so often and my eyes get blurry a lot but only for an hour or two at a time. I’m a visual artist so this is troubling but I have been assured that my actual vision is ok and this is just a symptom of vestibular migraine.

The long version includes multiple ENTs, a neurologist, GP and hero of a vestibular physio (without whom, everyone would still be sending me home with the epley maneuver and gravol). Clear MRI, and audiology reports, other tests pending (delayed by covid) but the ENT and neuro think Vestibular Migraine is my issue or maybe PPPD (I can’t figure out what this is). I did the low tyramine, low histamine diet for 3 months and have been moved onto keto. Only week 2, so far all keto has done is remove the energy I used to have but I’m going to give it a few months before I throw in the towel. Energy was one area where I didn’t struggle - as soon as an episode subsided, I would be immediately energetic again. Which I gather is unusual - I had no vertigo hangover.

I guess I’m pretty lucky because for the most part I can live my life around my issues. 2019 was the best year of my life, I was training for my first full marathon (which I completed without having a vertigo episode), having some successes in my career and really happy. I am still able to run a bit and have a decent work-in-bed set up for the times that is necessary. I’m happy I joined this forum, I think it will be helpful to connect with others in this same rocky boat. I realized today that I have kept thinking that this would resolve some day as suddenly as it started and that it might be more realistic if I just accept that this might be my life forever. It breaks my heart reading posts from so many fellow migraneures (sp?) who have been struggling for decades.

Thanks for reading

(Edited to add dx details)

ander454 · May 24, 2020, 3:58am

Welcome! Good job trying the diets first, sometimes that can completely resolve a person’s problems. I’ve never fully been able to embrace the PPPD diagnosis from a scientific standpoint, but it can help describe a certain set of symptoms and I understand that can be helpful for recovery. I usually think of PPPD as residual stuff that happens after a vestibular assault (whether that is migraine or physical ear trauma). It’s similar to chronic pain after a regular injury - the brain gets used to the pain signals there and keeps them going.

Yes, certainly acceptance is part of recovery. But I think being brave enough to try new treatments is a big part of it as well. Sounds like you are managing OK, but would like more improvement, have you thought about what to try next? I am 4 years in and pretty much 100% now, but I like to stay on here to support others who are having a nasty go of it. If you haven’t found the site wiki already, start there, but sounds like you have a decent diagnosis to go with and lots of future possibilities of treatment ahead of you.

As far as Keto, some do really well with it on here. I can’t stand it being in Ketosis or low carb at all, feel like I’m wasting away (also running background)…

Anyways, good luck and welcome! This site has been wonderfully helpful for my recovery. Keep us up to date on how you are doing.

Erik

elle84 · May 24, 2020, 4:24am

Thanks so much for the reply. That’s a helpful way of understanding PPPD.

In the first week of keto my weight dropped me close to 100 pounds which is too low for me (I’m 5’3") but I think a lot of the loss was water and I’m trying to gain back my losses.

I’m curious about your running background. My first two episodes were my most severe. The first was after a tough hill session and the second was after a 32km (20 mile) run with significant elevation. I had plenty of tough runs in between and after with no episodes but I wondered if others experienced a link. The funny thing is, usually if I feel an episode starting and can get out for a run or to the gym, even an easy 20 min of cardio seems to really help. So it seems like cardio triggered some episodes and helped others. Or maybe I’m just seeing patterns… I used to run 5 days a week, forcing myself out the door regardless of vertigo. It felt like running was helping the symptoms but I wonder if they were just happening cyclically and I was linking improvements to running because I enjoy it so much. Did you notice anything about your running/exercise when you were symptomatic?

I’ve read so many posts about people who can’t tolerate exercise any more which would be awful for me. My IT band is causing be trouble and not being able to really run for a few months has been as psychically draining as all the vertigo issues.

I just started some VRT exercises from my physio. They are brutal and make me so nauseous and dizzy, but I think I was nauseous for a little less time today than yesterday…maybe this will help. In August I have an appointment to talk meds (which bums me out, but I’m trying to be game to try all the things).

ander454 · May 24, 2020, 5:05am

My running doesn’t correlate too much with my vestibular migraines, although before all this started I was training pretty hard for middle distances, like the 1mile and 800m. Like you sometimes I would try to correlate it, and sometimes I fooled myself thinking I was training too hard or not enough, etc… Troubleshooting migraines is a long and frustrating process. I found that even meditation was a trigger for me - how depressing is that! My theory is that when you start to relax your blood vessels dilate, and well that can start a migraine cycle.

Running was everything for me for a long time too. But I’ve come to realize now that I was probably running to avoid some of my migraines for that last 10 years, or abort them as you have noticed. Now that I am near 100%, I don’t really feel the need to go out and run much at all. I might start jogging again here and there, but I’m fine with just walking / hiking and some tai chi. It’s a big change for me though, I’ve run most of my life.

VRT is good to try, it was indeed tough. It didn’t give me much relief, walking around was by far the best VRT for me. I resisted meds for a long time, but eventually started trialing them and got the best improvements from them.

Oh and BTW when I say migraine, it doesn’t really mean headache for me. I rarely have pain with migraine. I have what many call “head pressure” and lots of irritability, shortness of breath, nervousness, tons of other weird symptoms… and yes a floaty dizziness which used to be a rocking dizziness (never rotational vertigo like you). But when it went chronic it was hard to tell any correlation between the head pressure and dizziness. Now I can notice it. If I have extra head pressure during the day, I will be “floaty” and off-balance at night.

P.S. Nice long distance work! I’ve raced a few half marathons to know that I do not want to repeat. 1 fast mile is good enough. (-:

Onandon03 · May 24, 2020, 8:55am

Not unusual. Very familiar to me. I went a decade experiencing sudden, totally self-contained violent vertigo attacks which always lasted 48 hours after which I would immediately return to total normality, as if the attack had never happened, until the next one. No residual symptoms whatsoever. Not for many years. I too always seemed to have more through winter.

I loved Erik’s @ander454 deck of PPPD. In brief I understand it as something that happens after the condition causing it has resolved. Your posts show a good grasp of the MAV situation which will help and in my personal opinion should perhaps make you less susceptible to PPPD.

The longer I am associated with MAV the more I think it’s just an umbrella term for various undiscovered balance disorders. I can find no other way to justify such a wide variation of levels of affliction. MAV is described by some specialists as a ’ Migraine Variant Balance Disorder’. It must certainly affects the balance of some very differently from others. I have even read, somewhere, finding being able to run easier than walk is diagnostic of the probable root cause of the condition. I am almost sure I have posted further details, which currently evade me, somewhere in another thread.

elle84 · May 25, 2020, 2:47am

I don’t get pain either, I thought the ENT was absolutely nuts when he said he thought I was having vestibular migraines. The idea that I could be having a migraine for a month without any pain seemed crazy.

@ander454 What did work for you in the end, getting you near 100%? Did you do meds? It sounds like the diets, meditation and VRT were not super helpful for you.

And three cheers back at you for running - you must have been speedy!

@Onandon03 thanks for weighing in - so interesting that you also would be full energy immediately. I think you’re right about MAV being an umbrella term. I try to explain to friends that vestibular migraine seems to be the term for “what the heck is causing that vertigo”??

Onandon03 · May 25, 2020, 8:31am

Oh however much energy I had I’ve long since given up trying to explain the condition to friends. It’s a lost cause. . Like Erik and many others I never had the ‘headache’ either and it’s that lack that leads all too often to misdiagnosis unfortunately. Neuro years later tells me the rear head pressure which came on much later long after the self contained 48 hour attacks is the migraneous aspect. Do ensure you get effective symptom control whilst you are still episodic. It’s so much more difficult to treat once it turns chronic.

ander454 · May 25, 2020, 3:00pm

Medications were very helpful for me. This is my list, from most helpful to least helpful:

Amitriptyline (I’m on 20mg currently)
Cefaly Device (once per day preventative mode)
Emgality (one injection per month)
Lifestyle changes - less work, less responsibilities, counseling help, etc…
CBD oil - Lazarus Naturals (~5-20mg per day or as needed)
Migraine diet (Heal Your Headache). NO COFFEE.
Daily walking for exercise + some tai chi + meditation
Basic B-complex vitamins and migraine supplements (CoQ10, B2, Magnesium)

Teascone · May 28, 2020, 2:28pm

Hi! @elle84 it’s nice to meet you . Like you I started with vertigo dropping me to floor and vomiting for hours. Finding this board changed my life and gave me the courage to take something for it MAV. I’m on Effexor now. Best thing I ever did

elle84 · May 28, 2020, 5:42pm

Thanks @Teascone

These boards are definitely making me warm to the idea of meds which I’ve been really nervous about.

Update:
Yesterday I went into a clothing store to finally try and buy some new clothes (I’ve lost a lot of weight from all the crazy diets the docs have had me on). I was already feeling off all day, reaching into cupboards induced pressure and a bit of motion - but it’s like this so often I hardly think anything of it. Well, in the clothing store I could feel pressure in my head increasing. There was a dress I wanted to look at hanging above my head, I was trying to find my size and getting so dizzy reaching up and trying to focus on/read the labels that I felt like I might pass out. Or puke. Maybe both. I had to get out of there. I was full of nerves on the walk home (still avoiding public transit) but made it, took a gravol and passed out. I’ve never experienced this before - I’ll get rotational vertigo from time to time and have issues with head pressure or mild motion daily, but I haven’t felt like I might lose consciousness before. And so far from home. It’s really shaken me up. I’ve never had a problem from busy environments before but wonder if I’m becoming more sensitive - I noticed looking at the neon stuff was especially irritating (weird). I started keto two weeks ago and VRT one week ago. Both have been challenging. I wonder if it’s adjustment to one of these factors. I’m cooling it on the VRT for a few days (the exercises tend to leave me nauseous for 5 hours after). I’m wondering if keto is just not for me, I’ve been exhausted since I started, and I’m usually quite energetic. The experiments continue…

Onandon03 · May 28, 2020, 6:58pm

Don’,t panic about it, it happens but Do discuss you passing out with your medical professional soon as you can. That could be an important for them to know. I always found it was one question every medic I ever saw asked, do I ever lose consciousness. I imagine it has diagnostic implications.

Unfortunate timing because it may make it difficult to establish cause.

On the VRT the therapist I saw told me whilst doing VRT to expect and be prepared for anything to happen. Theory is the brain is being retrained so in an extra sensitive state. Could even explain the blackout. Would certainly explain increased sensitivities. Tends to get worse before it gets better according to the theory. From most I’ve read since if VRT side effects last more than 10, although some say 30 minutes it’s too much and is doing more harm than good although appreciate are you sure the nausea is result of VRT. MAV on its own often causes nausea. Btw many people find VRT only ever makes MAV worse. I subscribe to that one and you can find many other references on here and in medical papers to same effect.

elle84 · May 28, 2020, 7:44pm

Thanks @Onandon03 I’m glad to be reminded that things get worse before they get better with VRT. I had noticed in these forums that it doesn’t do much good for many folks, and sometimes only results in harm. I had a call with my physio on Tues and told him I was worse for hours after VRT and he reduced the intensity of my exercises - I didn’t even do them yesterday because of my shopping adventure.

I should have been more clear - though I thought I might lose consciousness, I didn’t. I “passed out” at home from the gravol which has knocked me out completely each time I’ve taken it (twice before, I always forget about gravol). But I will definitely mention this whole new experience to my doc.

dave1 · June 1, 2020, 1:45pm

Your description of the onset of your symptoms is familiar to me. Mine started with an attack of spinning vertigo, then another one the next day, then another a couple of months later… then recurring monthly (or two monthly) attacks of severe non-spinning dizziness, which lasted a week or two, with periods of calm in-between… then that resolved over time into just a chronic state of milder symptoms which ebb and flow 24/7 - lightheadedness, ‘pressure,’ visual disorientation etc.

I too have had the PPPD diagnosis. I found the Barany Society criteria helpful to read, also the article “Persistent postural-perceptual dizziness (PPPD): a common, characteristic and treatable cause of chronic dizziness” - which is free online. From what I can tell, the condition seems to be a case of: you have some sort of vestibular attack; your brain should return to baseline quickly, but for whatever reason it gets confused, and you start looping in the vestibular/migraine state, you become stuck there; inevitably you start obsessively monitoring your internal experience (“Is it still there today?”), and you start changing your behaviour (“I mustn’t get in a car, in case it makes it worse”)… and this has an unfortunate reinforcing effect. You end up sort-of training your brain to remain dizzy, rather than letting your brain let the dizziness go. I’ve noticed that, if I’m engrossed in a project, or having a busy day at work, I’ll often go for a few hours and not “notice” being dizzy at all… as though my brain tunes it out. Then I start thinking about it again, and the feelings return. Mysterious.

I also am not convinced that PPPD is fully what I’ve got, because my lightheadedness is also “triggered” by things like food, caffeine, temperature changes, sleep changes, certain supplements etc., which doesn’t seem to be a thing with PPPD. The doctor is convinced I don’t have migraine, but whatever I’ve got seems to function just like migraine. Rather thinking of getting a second opinion!

Also, just my personal view, but I don’t think keto is a good idea. I tried it a few years ago and got nowhere with it. I lost masses of weight (good!) but also had low energy, and the carbohydrate cravings ate me alive. In the end I cracked and binged on carbs… then did this in a cycle for a few months (keto, then bingeing on carbs, then keto etc.). Maybe there are people who can do keto easily, and maybe I just wasn’t one of them. But I’ve heard many stories like that. And I can’t imagine the cycling/craving thing is good for vestibular conditions. You need a baseline of stability: three balanced meals a day, all food groups accounted for, etc…

elle84 · June 2, 2020, 12:25am

@dave1 the definitions of pppd just bug me so much, seems so much like being told it’s all in your head, you’re hysterical… But I do think something got ‘switched on’ in my brain, and I just need to find a way to get it to relax and turn off. Allow my brain to remember/rebuild what it felt like to move through time and space previously. Your understanding of pppd is reassuring.

This all started for me during the best year of my life, I wasn’t bogged down with anxiety - I felt fulfilled, meaningful and happy. Oh well. I’m still usually feeling those things, just with a side of nausea. But that’s why I get my back up a bit when I read too much about pppd, it seems so much like the literature is saying ‘your anxiety turned unexplained vertigo into a chronic issue’. Maybe it did, who knows. All that really matters is where to go from here.

Keto is really tough so far. I’ve quit vrt for the moment so as to only be asking my brain to adapt to one crazy challenge at a time I’m weak, tired and feel like my hormones have gone totally out of whack (weepy, irritable) - which makes sense. I lost almost 5% of my body weight in the first week So far I’m not having huge cravings, eating this way is a bit of a chore. And it’s only been 3 weeks so I’m still hoping I’m just a super slow adaptor. I hear you re stability being important, if I’m still in this position after 2 months of keto, I’m going back to being near vegan and will just be more careful about not spiking my blood sugar and paying attention for triggers.

Sidenote, I started tracking everything I ate last Sept and have yet to really identify food triggers (lack of sleep for sure). Maybe caffeine. Which I’ve been off for months and months and I’m still wonky. Eventually I’m just going to have the occasional square of chocolate. If I’m going to be off balance anyways I’ll walk askew with a smile and some chocolate lol.

dave1 · June 2, 2020, 10:39am

I agree re. PPPD. My month reading through this forum has 80% convinced me that it’s a non-diagnosis, and that “vestibular migraine” is the real diagnosis. The PPPD set of symptoms is quite accurate to my experience, but I’m convinced it’s a form of migraine, and should be labelled as such. I also, like you, don’t like the stuff about “underlying anxiety” etc. When my condition first flared up at age 20, I was also having maybe the best, most fun, most relaxed year of my life. It went into remission (pretty much disappeared) for six years, ages 25-31… and through those years I had massive amounts of stress and some huge life changes - dropping out of uni, relationship breakdown, drinking heavily, smoking etc… - then I got my life in order, got a job promotion, found a new relationship and we moved in, felt much calmer and happier… then the vestibular condition came back out of nowhere!! So, like you, I have zero interest in theories that anxiety causes dizziness, or you get PPPD because you’re a naturally neurotic person etc. How come, the two times my vestibular condition has flared up, I’ve been in a really good place emotionally, and how come - through my most neurotic, depressed years - the condition disappeared?

You sound sensible and self-aware, re. keto. See how it goes. I’m still sceptical! Also, just my thought, but I’m also sceptical about tracking food, if you’ve been doing it since September (nine months?!) and haven’t found anything. All that time and effort… 20 minutes a day to do it? How about, since you’re so mindful about your eating anyway, you stop the tracking and use that time to take a nice walk?!