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Vestibular migrane

Hi everyone! New to this forum so any advice would be greatly appreciated. In May of this year I was heavily pregnant and had a terrible virus (flu like)and was in bed for days. 3 weeks after this I woke up spaced out and felt odd! Still had blocked ears from virus and still have ear fullness/popping to this day! It gradually got worse as the weeks went on. Things looked like they were vibrating and heat haze. Currently I have head pressure which gets worse at times, my vision jumps with my heart beat when I run upstairs, dreamlike feeling when I look around especially outside. Feel like I’m looking through a fishbowl or that feeling in your eyes/head when you look through a magnifying glass. I also see rain in the distance outside even when it’s not raining! I’ve seen ent who diagnosed it! Clear mri Scan and bloods normal! Can anyone relate to these symptoms? I’m on pizotifen and sertraline. Pizotifen for 7 weeks no improvement! I’m loosing my mind x

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Hi, and welcome. If it’s any consolation you’ve landed in the right place. You’ll find lots who can relate to your story on this forum. VM’s very hormone linked for many and your description fits a common pattern pretty well. Post partum might be even more common but that’s neither here nor there. Believe me, although it won’t seem that way at the moment, you’ve been lucky in quickly getting a diagnosis from ENT and being on recognised preventatives which you seem to be tolerating well. Trouble with VM is it starts quickly but doesn’t leave at the same rate. Tends to prove a long journey I’m afraid. Pizotifen is one of the quicker acting drugs, 10 weeks I’ve seen quoted to really kick in. There’s no quick fix I’m afraid. Have a good read around the subject, under Welcome and Wiki, that’ll help you understanding and for the time being please try to stop running up the stairs, that’ll help. Don’t worry. You aren’t losing your mind. It only seems that way at the moment. You’ll experience all kinds of seemingly queer and unrelated symptoms before the end, quite benign but unsettling most of them. VM is a variant balance disorder. If you can relate to that and get to understand symptoms more, you’ll worry less. VM loves to feed on worry so try not to give it the chance. You’ll find alot of support here. I’d say @dizzy3 who’s a post partum VM sufferer who’s been dealing with it, baby and career for a year will be in touch, guess you’ve alot in common. Meanwhile you may find the appended provides alot of further insight. Once again, Welcome. Helen

https://www.thewaltoncentre.nhs.uk/uploadedfiles/leaflets/Migraine%20-%20A%20Comprehensive%20Guide.pdf

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Thanks you so much @Onandon03 for your response! As you are familiar with this you understand how scary it can be. I was initially told it was stress but I knew deep down it wasn’t! Is ear fullness/popping linked to migrane? Also the jumpy heart beat vision? I will try not to run upstairs anymore :joy: It’s been 6 mths of this rubbish and I’m running out of patience although I understand this isn’t an overnight fix. I have the dreamlike vision/detached feeling 24/7! I tried proponolol but didn’t help at all. I get the shivers and flushed cheeks also time to time! And reading that link I also suffer with reynaurds. I get scared that I’m going mad! The feeling that your head is in some floaty cloud with a screen infront of everything is the worst! This seems like a great site! X

Do many ppl on here experience the dreamlike vision and feeling? Like there is a screen infront if you also?

Ear fullness, heartbeat vision - all symptoms some experience. The dreamlike/detached feeling, ‘Alice In Wonderland’ syndrome that’s called. The ‘rain in the distance’ is what’s called Visual Vertigo, you can Search this site/the internet for more info but the Walton Trust one’s as good as any for an explanation although not everyone’s in agreement about it, many find it reassuring to have an explanation that seems to make sense. Unfortunately they yet to come up with ‘patience tablets’. So best to dig deep and grit your teeth for the long haul. Next month I’m 15 years in but don’t worry, you go quick diagnosis, that won’t happen to you. Oh, it’s a great site but any site’s only as good as those on it that participate. We are pretty good, and nice too, if I say so myself. You’ll get support here. Helen

hey, yes all your symptoms are pretty familiar. How old is your baby now? I think for me sleep, diet and calming the anxiety has been key in getting better. I stopped expecting to get better in days and put it in months timeframe. I try to see progress in weeks, how i felt in May versus August, etc. I have had several moments/ days of feeling almost normal, and relapses or crappy days. It is a process. I have done psychotherapy, read a lot about neuroplasticity, accupuncture and physical and vision therapy. It takes a lot of time, discipline, patience, meds and a little bit of humor to get better. I am on effexor at 150 mg. It is a tough test in life but many people suffer horrible things out there so in a way we are lucky this is our share of human suffering.

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It’s one of the few symptoms I’ve avoided, so far although it’s hard to type with your fingers crossed. @Amylouise is the one who comes to mind. It’s just another benign symptom, inconvenient, annoying but harmless. Eventually the drugs should control it for you. Don’t worry.

Thanks for your reply @dizzy3 my baby is 6 mths old now and I have spent my maternity leave with this awful feeling instead of enjoying him. I know I need to be more patient just feels like it will never end! When your outside do/did you feel dreamlike?

Thanks @Onandon03 yes I spk to Amy regularly l! She has been amazing! Wow 15yrs! You have the patience of a saint then! Shall I stick on Pizotifen a bit longer then?

yup, i did for a while, my worst has been the rocking. Try to ficus on baby, it is hard but put your energy there. :slight_smile:

I do my best! :grin: what meds are you on? What has helped @dizzy3

Just realised it’s you :slight_smile: literally you know I am exactly the same !:grimacing::sob: stupid dream vision!

Thanks for tagging this literally sounds like me to a t ! X

It me Amy, Natalie :joy::joy: we do sound the same thou!!

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Honestly I’m laughing so much right now :joy::joy:just realised

This has cracked me up :joy::joy:

At least we see the world the same ay :joy:

We do ha ha!!! Wish we had something else in common thou instead of this :tired_face:

I would think so. I’m no medic but they reckon preventatives can take 4 months to kick in and then you must remember they won’t stop all symptoms at once and may not stop all anyway. Improvement will come gradually. You don’t wake up one day and find it’s gone. Your brain has to build higher tolerance to triggers thresholds. You should probably try migraine diet and lifestyle changes, then, perhaps see consultant if things aren’t beginning to improve. Eventually they may want to add in another drug or change yours but it’s very early days as yet. Helen

Thanks! I will stick with the pizotifen then and may add another one in! I did have a brief moment about 4 mths ago where everything seemed a lot clearer but it went again! That was when I came of citalopram it was around day 4 of coming off it! I sometimes get burning flushed cheeks too and the flu like shivers. That’s when I think I’m having an attack?

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