After effect of migraine aura disorientation, vision issues, feeling of disconnection, Help please or advice 🙏🏽

[Ravks]

Hi everyone,

Difficult post for me as going through alot and don't quite know what to make of it.

Last year I had my baby not long after I was sick with flu leading to ETD blocked ears reduced hearing stress of it all lead to have a serious migraine aura which left long lasting sensitivity to light, and weird reflection in peripheral vision I wore a eye patch for a month , optician said vision is brilliant saw a neuro opthalmologist who said eyes are healthy he put it down to lack of sleep and stress. I had daily pressure on my head for a few months after that. Limited with meds due to breastfeeding.

I am still experiencing light sensitivity some days, I have a disconnected feeling weird to describe, floaters in right affected eye.

I have had migraines for a long time but nothing like this. GP are not bothered. I also have tinnitus.

Feeling low and just wonder is it worth being around for, too much at times.

If anyone has advice or similar experience please share any advice . Thank you in advance 💜

[Cavapoochonowner]

Hello there, sorry you are going through a rough time.One thing after another.I have had migraine for over 40 years and it can really get you down.You have had a baby, which is one of the biggest things anyone can go through, and health problems on top.I hope I am not speaking out if turn, but could the disconnection you are feeling be anxiety.I say this because a few years ago my eldest son was gravely ill and the whole of our family was so stressed and anxious.My daughter in particular suffered terribly and I remember her not wanting to be in the house on her own and sleeping with the TV on all night.I remember her saying she felt weird and as if her body didn't belong to her.It was all due to the anxiety and stress she felt.She did go on beta blockers for a while to calm it and used other techniques such as relaxation apps and excercise.Do you have anyone you can talk to, a friend or family member just to give you that support while you need it?Could you talk to a health visitor?I have had 3 children and lack of sleep can cause so many things, you wouldn't believe.There will be an answer for you I am sure of it.Do you have support and help with the baby?Your hormones will also still be all over the place after the birth and with still breast feeding and that also can affect how you feel.Please go back and see a different GP or a health visitor.The migraines may be a symptom of the lack of sleep and anxiety and if that can be helped your migraines may improve on their own.From my own experience I know that my migraines got worse if I was stressed or lacked sleep and also my hormones played a big part.I am thinking about you and urge you to see another GP or health visitor so you can get the support you need.Best wishes.

[Ravks in reply to Cavapoochonowner]

Hi CavapoochonownerThank you for your reply.

I have referred myself for therapy just on waiting list. I talk to my husband but for I just pretend to act normal and then all at once I melt down to him he is great.

Yes I think anxiety is underlying here since all this started I have panic attacks never had such things prior all this. It's all connected just alot in the past year I really have been stressed and pushed to my limits.

I'm back at work full time, baby wants breastfeeding every 1 to 2 hours at night so it's alot at moment maybe if she weans of I get to actually sleep and rest where I may feel better. Thank you very much for your kind words and sharing your experience. I hope your family are well too.

🙏🏽💜😊

[Cavapoochonowner in reply to Ravks]

Sending you all the best wishes in the world

[bennevisplace]

Ravks, I can really sympathise with you. I have chronic migraine and when it flares I can't function at all and simply have to sleep until the worst is over.

From your description your symptoms vary, but I know what you mean by the "disconnected feeling", which must be very difficult when you have a baby who needs your constant attention! Possibly, the demands of motherhood coupled with the post-influenza symptoms may have set in train a negative feedback loop, with sleep deprivation and stress aggravating your migraines and tinnitus.

Is it possible for you to take a time-out from your responsibilities?

Medications for migraine get mixed reviews on this site. I've tried a range of meds over the past 2 years and none have really proved effective. I do recommend you try acupuncture, which did help me a bit, after some trial and error.

Tinnitus is difficult to treat. I can only direct you to the HealthUnlocked UK support group healthunlocked.com/tinnitus...

Best wishes.

[Ravks in reply to bennevisplace]

Thank you for your reply bennevisplace.

I felt alone with my symptoms, very hard to explain the disconnected / spaced out feeling. The time out I get is going to work full time, the baby breastfeed every 1 to 2 hours on the night so I'm definitely sleep deprived and I just think with everything that spiralled with flu ears etc lead to other things stress levels definitely high.

I'm coping with tinnitus at most times, I'm part of the tinnitus group on here. Just ears and eyes / headaches are bothersome just want to feel like myself.due to breastfeeding I can only have paracetamol .

Hope your migraines are settling 💜😊 x

[Xandi2]

I have chronic vestibular migraine. I have a disconnected feeling you're sort of describing. Like I'm not really connected with my body, I think some people describe it as Alice in wonderland syndrome sometimes. There are also lots of visual disturbances that come with vestibular migraine, also tinnitus and head pain. I would have the disconnected feeling and then i would feel disequilibrium, but i didnt feel disequilibrium all the time. I saw a Neuro-Otologist who helped diagnose me initially if that helps.

[Ravks in reply to Xandi2]

Hi xandi2

Thank you for your reply and yes it helps to look into vestibular migraine will definitely read up on it this weekend. Maybe see if 8 can be referred to a neurologist . Definitely sounds like some of the symptoms I have.

The way I describe the disassociated feeling is like I am spaced out, the focus is hard some days. Lack of sleep with demand of breastfeeding little one every 1 to 2 hours doesn't help either and working full time. Just hope for some calm and peace 🙏🏽💜

[ChrissieMons]

Don't let this get you too far down - your baby needs you. You must speak to someone about how you feel - use a phoneline where you can be anonymous if you like or can't wait for an appointment with your GP. Take a copy of what you've written here to the surgery when you do get an appointment. Stress has a habit of making everything worse and it is not easy to just 'pull yourself together' - everyone who has ever suffered in this way knows. But you must talk to somebody who can help you.

[Ravks in reply to ChrissieMons]

Thank you ChrissieMons

GP isn't bothered at all, tried them. I have self referred for CBT / therapy see if it helps. It's hard to feel like me when I have this unusual disassociation from feeling like my self very hard to describe. I appreciate your kind words 🙏🏽💜

[Cookingcookie]

Glad you had so many replies..you've alot to contend with..vestibular migraine could be at cause...I think all being new mother and breastfeeding all admirable ...I breast feed myself into exhaustion....and sounds post flu really need to put yourself first healthy mum healthy baby...I wouldn't feel so had if you got some advice about either expressing and having someone else feed baby or just go to bottle so someone can ...important to get regular routine which hard with baby n feeding especially breast which is on demand...Be kind to yourself...get as much rest as possible as much support physically and mentally so you can be as best you can.....and get support to get through these horrendous experience of migraine with aura......

Make sure you under a migraine specialist neurologist and that you really just give yourself permission to rest relax eat and enjoy life as much as you can ...even small things like five mins in the shower ,cuppa with friends or a sit in the sunshine even with glasses on.....but put yourself first ,ask for as much support you can get you deserve it.......lots going on......wish you all the very best ....

[Ravks in reply to Cookingcookie]

Thank you for your reply cookingcookie. I am trying to be kind to myself, just once breastfeeding journey ends will allow me to focus on myself and have body back to myself. I find breastfeeding hard the demand etc just something that never came easy never mind the rest to contend with regards to health. I will explore with GP regards to seeing someone for migraine and vestibular migraine.

Thank you very much for your kind words appreciate this group and support luv to all 💜🙏🏽 x

[Cookingcookie in reply to Ravks]

You take care wishing you all the best...

Breast feeding comes easier with time ....in time I remember being rewarded by a chuckling baby handing hands they become more communicative ....smiling back at you as you feed.... .....just thought if getting too exhausted could ask someone to give you a break .....with some pumped off or even bottled milk so you could get some good night's sleep......it is hard but anything difficult has its reward! You can do it I have no doubt and uou sound pretty determined! Good on you.......

I know all this migraine on top all over whelming ....I really hope you find a good neurologist who specialises in migraine ....headache clinic........

I expect plenty have recommended better messages.....it is a very good site.....all the very best to you and your family......

[Ravks in reply to Cookingcookie]

Breastfeeding is a temporary phase which will fly by will cherish the moments not long left till little one is ready to wean off breast 🤞🏽 Thank you for your kind understanding words is a real comfort to me.

Lots of support on this group.thank you Cookingcookie 💜 lots of luv from me to you and your family xXx

[Cookingcookie in reply to Ravks]

So glad 😊 for you and little one....yes precious time.......Happy fond memories I have of time breastfeeding...very special Bond but can be very exhausting !

Have memories of asking husband to take baby at 4 am once and drive round the block so both of us could get some sleep ! I woke refreshed to enjoy the day.......I didn't have very bad migraines very often then so was so very lucky.....I could not do it now with my chronic h.m being so incapacitating.....although like you I would no doubt have found a way as I have with motherhood......thankyoi for your kind wishes to myself and my family.......thinking of you .....glad lots been intouch ....yes very caring website community. Xxxxx