Vestibular migraines

[Katielouise456]

Hi guys does anyone else suffer with vestibular migraines?! I’ve also got PPPD I’ve suffered with this for 8 years now my symptoms are constant everyday... (dizziness, off Balence, headaches occasionally, feeling like your on a boat, concentration issues) I’m currently on flunarizine which is keeping the symptoms to a manageable level but still I’m lightheaded all day everyday just wondering if anyone is going through the same?! Thank you

[StaPar]

I have the same symptoms (3.5 years post-head and neck injury). I have seen many specialists and they say it’s visual, auditory, vestibular, post-concussion, and from cervical instability. None can agree and none have been able to help. I wish you luck!!

[Katielouise456 in reply to StaPar]

I’m so sorry to hear that 😔 it took me 5 years to actually be diagnosed.... there’s not enough research into these conditions

[StaPar in reply to Katielouise456]

Who diagnosed the PPPD? No one would do a lot to help until my neck was addressed. Now my neck has been diagnosed and no one will help because it is so unstable. 🙄

[Katielouise456 in reply to StaPar]

I saw a neurologist at a headache clinic it took me 5 years to actually be diagnosed, don’t give up just keep pushing for answers

[bamboo89]

Oh my goodness - I had never heard of PPPD, so I looked it up. Its exactly what I've suffered for years and years. I don't know how you tell the difference between that and vestibular migraine though, which I thought I might have, since I've also suffered with aura migraine for some years, but having read all about PPPD, that fits better for me.

After all these years, I had already learned its linked with my neck; I used to think I was reacting to emulsion paint, because whenever I painted a ceiling, I'd be dizzy and have bad vertigo for six weeks, eventually fading to that feeling of being on a boat. It wasn't the paint, it was looking up at the ceiling and bending my neck right back that caused it... I had a minor accident which probably damaged my neck when I was 25 - 6 weeks later, I had such bad vertigo I couldn't leave the house, and could only go to the loo or whatever by crawling on my hands and knees. It eventually passed, but ever since, I've been prone to those attacks and left with periodic bouts of 'standing on a boat', such that I used to sway gently from side to side when standing still in a queue or something, to distract my brain from the feeling of inappropriate movement. Funny thing is, when I had the 'standing on the boat' problem, I could ride my bicycle perfectly well - but couldn't walk across a room, I'd have to walk close to the wall. Having the bike with me on those days was great, because it also helped me stay upright and less dizzy holding onto it and walking or standing still to cross the road.... I even started getting a trolley at the supermarket, even if I didn't need much because it was something to hold onto...

Now that I think about it, I also started having trouble with patterns after that little accident - looking at a wall with particular patterns in the wallpaper (usually close stripes or closely patterned tiny flowers or something) would trigger aura migraine and/or dizziness, also vertical blinds might do it. Some days I have trouble on escalators, I can't look at them as I use them because the lines make me dizzy. And all these years I've had various 'explanations' but have never heard the diagnosis PPPD. To this day, I cannot risk moving with my eyes closed,god forbid I go blind....

All I can say is, I never took a drug for any of these issues, I used to visit the cranial osteopath about every six months from the age of 32 - a visit there would resolve the issues, both with neck pain/headache and dizziness. And the aura migraine I have solved accidentally - I gave up dairy over two years ago for another reason, then six months later suddenly realised I'd not had one at all when I'd been having them at least once a day, often more. So I ate a cheese sandwich twice, two days apart, and bingo, aura migraine... and that form of migraine can make you dizzy too. Certainly, if I risk eating cheese (I love it, especially strong cheddar), the next day I feel 'migrainy' - bit dizzy, off colour, tired, poor vision, photophobic, bit shaky and clumsy; although one small hit of cheese doesn't actually cause an aura migraine, it makes me feel like one is on its way. Then it passes by the next day...

Sorry this is so long, but I just wonder if your neck is implicated, and whether something you're eating or being exposed to regularly is contributing to the problems.

Miriam

[Katielouise456 in reply to bamboo89]

Hi I get most of those symptoms you’ve just said I also sway from side to side when standing still.... I’m sorry your going through this too 😔 it’s a vile condition and there’s certainly not enough research into these conditions 😔 some things I eat can trigger off a vertigo attack like to much sugar and smoky bacon crisps believe it or not.... also additives and stabilisers.... my symptoms are constant but the medication I’m on is keeping it to a manageable level

[bamboo89 in reply to Katielouise456]

I don't know how old you are, but you may find you have periods of time with no problems at all, I did after some years. Now it comes and goes... It is a nightmare to live with, though I've sort of got used to it at my vast age, though the condition probably explains why my neck and shoulders are so rigid; it's one of those horrible things that isn't going to kill you but makes your life miserable... Good luck with it.

Miriam

[Katielouise456 in reply to bamboo89]

I really wish I would go periods of time without symptoms 😔 it’s been constant for 8 years now unfortunately.... I do hope for better days and I often prey it goes one day as quick as it came

[bamboo89 in reply to Katielouise456]

I was just thinking after I wrote my last comment,that actually, maybe I've just got used to being constantly somewhat unstable and have developed compensatory mechanisms to cope with it - in other words, it's become 'normal', and I only notice it if I have a sudden bout of intense dizziness. If you live in London, I recommend you do not attempt to walk over the Millennium Bridge - it moves in a very subtle, barely detectable way which is the worst kind of movement for me, so when I did it once, I had to cling on to the railing halfway across and then had to sit down for 20 minutes for my instability to subside....😧😊 Needless to say, I have never attempted using that bridge again!

[Katielouise456 in reply to bamboo89]

Yes I totally get what you mean you sort of learn to live with it don’t you.... omg no that would be horrendous 😫 I think that would of knocked me sick lol

[Vvendyc]

Wow I’m reading everyone’s comments and I just feel hopeless. I started feeling like this about 8 months ago after the flu and a miscarriage. Honestly thinking on some days that it’s psychological but I don’t know. I have a few other symptoms like ear pooping, fullness, sometimes like they are congested. Doctor said estuchian tube dysfunction..It’s miserable to feel this way, there’s only bad days and really bad days. If I’m stressed it’s stronger on those days ... weird though when I’m in car I don’t feel it and also not much when walking. Sitting at work or standing I can feel the swaying.. some days I feel hopeless and think about being like this forever. When I’m at work and I can’t focus it’s the worse stressful feeling .. I try to sit back take a few breaths and not focus on the swaying. I have noticed my facial muscles feel tense and hurt when I massage them too. I get chiropractic work in my neck that helps a bit. I think a lot has to do with my neck and jaw ... I pray for it to end

[Littlemitten in reply to Vvendyc]

Hi Vvendy, I just read your post. How are you? Do you still have the symptoms? Does chiro work for you?

[Littlemitten]

Hi Katie! I'm still having undiagnosed symptoms for months, so similar to PPPD but doctors still aren't sure. I'm so tired feeling lightheaded all the time, everyday. I'm also easily tired, but even when I'm just at rest, doing nothing, watch tv, talk, I could just get lightheadedness. Moving around somehow helps ease it. I've never had these weird symptoms before, it just happened all of a sudden, out of the blue I had vertigo, and that's it. The whole circus began. How do you cope with PPPD for years? Do you also have other issues related to your symptoms (stomach, muscle weakness, fatigue, etc.)? Does it affect when you travel on plane? Sorry I ask alot, I hope it can open my eyes about PPPD. I'm sure I develope health anxiety from this unsure things, I feel invisible. 😩

[Littlemitten]

Ohh and can you still do exercises such as jogging, fitness, or dancing? Do you notice if it gets worse before menstruation?

[Katielouise456 in reply to Littlemitten]

Hi the only exercise I can do is a bit of walking and it definitely gets worse around menstruation

[Natz36 in reply to Katielouise456]

Hi . I was told I have vestibular migraines but after a recent blood test my ferritin levels we’re low and that can be the cause of dizziness balance issues etc . If you can try get some blood tests and ask for a copy if ferritin is under 100 you need supplements.

I’m not saying it will be that but since I e been on iron medication I don’t have symptoms as bad .

I’m just waiting to see if my levels go up if I still have the dizziness and boat feeling!

If so then I have must have vestibular migraines x

[Katielouise456 in reply to Natz36]

Hi I’ve had bloods done last year in December and they all came back fine.... but I’m glad you found out what was causing yours hun x

[Natz36 in reply to Katielouise456]

Do you have a copy? If you can ask as there normal is not what it should be x

[Katielouise456 in reply to Natz36]

No I don’t.... my vitamin D was low but I’m taking vitamin D for that now x

[Natz36 in reply to Katielouise456]

Try get a copy and you can always post your results. I would ask for your iron to be done and a copy of your bloods . X

[Katielouise456 in reply to Natz36]

Ok I will ask for a copy hopefully they will give me a copy lol x

[MyHead1]

Yes I have vestibular migraines. Dizziness & headache when I tilt my head, get up out of a chair. Sometimes Ubrelvy helps, but not always. Haven't found anything that works consistently.

[Katielouise456 in reply to MyHead1]

I’ve been put on flunarizine which is helping.... my symptoms haven’t gone but it’s better managed now... I’m still dizzy everyday but it’s calmed down a bit

[MyHead1 in reply to Katielouise456]

Thanks, I'll ask my doc about it. I'm already on Diltiazem for BP, so don't know if it would interfere since it's also a calcium channel blocker.

[MyHead1 in reply to MyHead1]

Seems not to be available in USA

[Katielouise456 in reply to MyHead1]

No unfortunately it’s not licensed in the US