MAV, isolation and mobility

Hi there

I’m a long term migraine and vertigo sufferer, but have only just had it properly diagnosed as vestibular migraine, after 30 years. I am currently a chronic migraineur with basilar and aura migraines. I’ve posted on here on and off since 2007.

I had an acute vertigo attack at the end of last summer, the worst since the very first one I had. Since then I’ve gone back into a chronic migraine state. It is taking a long time to recover, the longest ever, 7 months so far (usually it would be a few weeks) and I’m still experiencing bouts of rotational and dysequilibrium, but I do have more good days now so compensation is taking place. I am able to walk out more often now which is a huge improvement. The migraines however have not really improved since they started 3 weeks after the attack, so I feel quite ill for much of the time. I saw a neuro-otologist last week for the first time and had a set of ENG etc tests done, some I couldn’t do as I am so motion intolerant but I managed 90% of them. This is where vestibular migraine was confirmed, along with possible BPPV. The tests were normal apart from one hearing test with a slight drop at a particular tone in both ears at 40, this I was told was nothing to be worried about, but they were curious about how this had developed or been caused. I am going onto a migraine preventative and then go back in three months time for a review.

I was relieved to get the diagnosis (though it wasn’t as surprise as I’d worked that out some years ago, but needed it confirmed), but now I’ve come down from that high I am feeling quite low. She told me not to drive until I go back for the review (I very rarely drive, but it’s a bit of a lifeline when I feel well enough to, and I never go far). Drinking is out, along with all the other migraine diet changes I made months ago and my life feels torn apart by it all. I’ve also lost my job and income due to MAV. It’s been difficult not to become isolated, and I do try and get out on most days, but now I feel really trapped (I live in a rural village) knowing that I can’t drive on the odd occasion. I think I feel as trapped by the illness as I do by the practicalities of getting around with it right now. Everything is now relying on the preventatives to stabilise my condition.

How do others cope with this lack of mobility and isolation? I’m on my own a lot and have no practical support 3-4 days a week, I’m not always able to do things like cook on my bad migraine days.I wasn’t feeling depressed, but my mood has really dropped over the past couple of days at the realisation of it all. It’s hard to know how I will manage.

Any tips gladly received!

Has anyone been referred for counselling with their MAV? Did it help?

Hi Mrs G,
It’s so bad that you have had to give up your job & feel so isolated not being able to drive. I was already retired when this MAV hit me but couldn’t drive or get out without support for a long time. I had counselling for doing meditation to cope with the anxiety & panic attacks when dizzy which helped a small amount. The only thing that has really helped me is the medication & only when I got up to 100mg of dothiep + Ativan. Hope your preventative helps - what are you taking?

Hi Barb

I’m back on amitryp after previously trying it for a month with my GP. I’m really hoping it will perk me up just a little bit. The trouble is I am not very drug tolerant so I am nervous of stepping up the dosage, especially when I’m home alone, but I may do it by 5mg rather than the 10mgs as suggested. I am trying to be optimistic, but even the migraine diet had no effect on my migraines, but I do still stick to avoiding the foods suggested and especially the couple of trigger foods I was able to identify. I think my hormones might be in control of MAV right now, I am suspicious that I am in peri-menopause.

I have had MAV for so long, and acutely at times, but never expected to end up disabled by it in the long term. I’d had a lot of major stress events happen last year and I think my body just couldn’t cope with it any longer. It’s rotten for all of us MAVers, it’s just seizing those better days and periods of recovery that end up meaning the most.

You mentioned ativan, I’ve not had it but I wonder if they might help me on my bad days, I’ll speak to my GP about that as I noticed others on here find the mild sedatives useful at times. I have a history of panic attacks, but have hardly any now, that’s not to say I’m not an anxious person though. I feel like I have a lot to worry about right now. I do panic when I get rotational spin, but as soon as the spin stops by sitting still or whatever I don’t panic. I think the counselling might help me more with what I am going to do with my life now. I think my consultant thinks I am phobic about being made dizzy by their tests, she’s probably right. I have always been terrified of rotational vertigo and the aura stage of migraines.

Thanks for answering!

I wish I had advice, but having difficulty coping myself right now. thanks for writing me earlier, btw! I’m so sorry to read that you have been so disabled by this. I can empathize greatly. I hope so very much this drug is your answer. I know it works for many, and hope it does for you as well! it very well, might!!
btw - I have recently tried ativan at night. it didn’t help with the MAV, but did help me sleep on nights that I couldn’t sleep because of the rocking in bed, and my anxious/depressive thoughts getting the best of me.

Hi Mrs G,

I was in a similar position to you about 10 years ago. I am born and raised in Sydney but I moved away (on my own) about age 28 for work, to a country/regional area. It was difficult to make friends outside of work and regardless, we all lived spread over quite substantial distances and did shift work so keeping track was hard. I became very ill with optic neuritis (suspected to be migraine at the time and my personal view now is that I had both, concurrently). It was a very, very scary time - I needed help and it was hard to get it. Medical facilities (for MRI etc) were a long way away. It was also one of the reasons I moved back to Sydney - to be closer to my support networks.

That’s not any real advice I know, but just letting you know I understand how difficult it can be to be so isolated.

I don’t really have any tips per se, other than to say that you will probably surprise yourself with how much you can push through when you have to, how independent and strong you can be. Planning is good - when you are well do all the boring stuff like cleaning and paying bills and shopping, cook ahead and freeze meals, that kind of stuff so that when you are ill you don’t have to worry about it.

Hang in there!

Hi Lisa

It’s a journey of drugs now, just as it is for many of us, I’ll give it a go. I really hope you find something that helps you to feel more comfortable soon. The rocking you get: I have had that, but only for short periods. It is unpleasant, does it stop when you are in a car with the movement? My condition fluctuates so much from hour to hour, day to day, I can wake up feeling awful, have eggs (I have this strange craving for eggs with migraine, have for years) and sometimes it seems to pep me up for a few hours and gets rid of that head fog, but mostly I have little control over it.

I think we all just need those better days to look forward to, and then when we get a few of those regularly start allowing ourselves to hope for some good days, and then more.

I need to find a new niche in life for myself, I guess it’s all around adapting and accepting what is for now and finding ways to just get through it in the best way I can. I’m not sure where to start, but there is no reason why our lives shouldn’t be interesting and enriching, even with this, in some way. It’s just finding out how and what will fit around MAV. I will definitely ask about the sedative, I’m not a fan of taking any medication, but it will be a useful one for me to have on standby.

Wishing you a better day, and then more.

Hi Victoria

yes work tends to be the focal point for interaction when you move to a new area. I have made acquaintances here, but not friends yet, it takes time and being ill is not a great time to make new friends. I’ve also had some not very nice things said to me by one person about my illness in this area (and places like this are gossipy if you share things), which really made me wary of mixing more, and sharing information about my health/what I can/can’t do for now. A lot of people just don’t understand and don’t want to, migraine and it’s symptoms have never been well understood by those that are fortunate enough not to have it. Otherwise I am really happy where I live, the happiest I’ve been for a long time, so it’s not that I want to move, I’m just frustrated that this illness makes it more difficult for me to mix and commit to things and that it’s stopped me from making new friends so far. I am in limbo, like lots of us I guess, just waiting for things to change or find our way through it. I don’t have any family over here at all, my in laws are in another country so apart from a couple of close friends that I left behind, I never really had a support network due to my lack of family, just my husband. I am just going to have to find ways to make life a bit better.

Yes, on the good days I do exactly what you recommend, get the cleaning done, pick up shopping and cook. I’ve started to buy the odd ready meal for emergencies, it really helps on those bad days. I cram so much in on the good days I probably overdo it, but it feels more like survival! Did you get over the worst of yours?

Thanks for taking the time to respond.