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 Iā€™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 itā€™s not raining! Iā€™ve seen ent who diagnosed it! Clear mri Scan and bloods normal! Can anyone relate to these symptoms? Iā€™m on pizotifen and sertraline. Pizotifen for 7 weeks no improvement! Iā€™m loosing my mind x

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Hi, and welcome. If itā€™s any consolation youā€™ve landed in the right place. Youā€™ll find lots who can relate to your story on this forum. VMā€™s very hormone linked for many and your description fits a common pattern pretty well. Post partum might be even more common but thatā€™s neither here nor there. Believe me, although it wonā€™t seem that way at the moment, youā€™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 doesnā€™t leave at the same rate. Tends to prove a long journey Iā€™m afraid. Pizotifen is one of the quicker acting drugs, 10 weeks Iā€™ve seen quoted to really kick in. Thereā€™s no quick fix Iā€™m afraid. Have a good read around the subject, under Welcome and Wiki, thatā€™ll help you understanding and for the time being please try to stop running up the stairs, thatā€™ll help. Donā€™t worry. You arenā€™t losing your mind. It only seems that way at the moment. Youā€™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, youā€™ll worry less. VM loves to feed on worry so try not to give it the chance. Youā€™ll find alot of support here. Iā€™d say @dizzy3 whoā€™s a post partum VM sufferer whoā€™s been dealing with it, baby and career for a year will be in touch, guess youā€™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 wasnā€™t! Is ear fullness/popping linked to migrane? Also the jumpy heart beat vision? I will try not to run upstairs anymore :joy: Itā€™s been 6 mths of this rubbish and Iā€™m running out of patience although I understand this isnā€™t an overnight fix. I have the dreamlike vision/detached feeling 24/7! I tried proponolol but didnā€™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 Iā€™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, ā€˜Alice In Wonderlandā€™ syndrome thatā€™s called. The ā€˜rain in the distanceā€™ is whatā€™s called Visual Vertigo, you can Search this site/the internet for more info but the Walton Trust oneā€™s as good as any for an explanation although not everyoneā€™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 ā€˜patience tabletsā€™. So best to dig deep and grit your teeth for the long haul. Next month Iā€™m 15 years in but donā€™t worry, you go quick diagnosis, that wonā€™t happen to you. Oh, itā€™s a great site but any siteā€™s only as good as those on it that participate. We are pretty good, and nice too, if I say so myself. Youā€™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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Itā€™s one of the few symptoms Iā€™ve avoided, so far although itā€™s hard to type with your fingers crossed. @Amylouise is the one who comes to mind. Itā€™s just another benign symptom, inconvenient, annoying but harmless. Eventually the drugs should control it for you. Donā€™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 itā€™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 Iā€™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. Iā€™m no medic but they reckon preventatives can take 4 months to kick in and then you must remember they wonā€™t stop all symptoms at once and may not stop all anyway. Improvement will come gradually. You donā€™t wake up one day and find itā€™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 arenā€™t beginning to improve. Eventually they may want to add in another drug or change yours but itā€™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. Thatā€™s when I think Iā€™m having an attack?

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