Tips to get over a relapse

Hi everyone. Me again! I am currently having a bit of a relapse. Has been going on for a few days now and has coincided with me returning to work full time.

After chatting on here with you lovely people I am pretty certain that it’s the stress of being back at work that has caused the mav to flare up. Anyway, my question is do you have any tips as to how to manage/cope with it and speed up my return to baseline. I know nobody can tell me how long this is likely to last but I’m at a bit of a loss with what to do with myself!!

I have already asked the question whether or not working will be damaging and I’m thinking that if I manage to control my stress levels things should settle. What I’m confused about is whether or not to just take to my bed for the weekend or maybe go and do a bit of shopping. The thing is, I’m swaying wherever I am. Sometimes it is definitely more intense :frowning: I am trying to be careful about what I’m eating, I’m just unsure about how much rest I should be getting. It’s such a pain…after living a pretty normal life for the past few months I’m now back to worrying about being on my own in places in case I have be a ‘funny turn!’

Would be good to hear what people find the most helpful during the bad times.


For the past few months I thought that the MAV had gone, I thought the minor symptoms I suffered with would be all I had to deal with. This is my first ‘proper’ relapse/blip. I didn’t see it coming. I have spent a lot of time on here, even when I’m not posting I am often reading. I am a relative ‘newbie’ to this and I think what I’m experiencing is very common. I do worry, and I know this is a common worry, that this is my new ‘normal’. From what I can gather people can get hit with this and then generally manage well, albeit with some symptoms, returning to their baseline. Im so frightened that I’ve been well, relapsed and will never return to ‘normal’. Can this even happen?!! I know some poor people on here have not yet found their correct med, I sincerely hope you all do. For me to be moaning about my relapse seems a bit pathetic as I know some of you are still suffering 24/7. I am just a bit worried still!

Love to you all (sorry for rambling on!)


Hi Kathy

Sorry to hear you’re suffering…

Seems that a lot of us experience a relapse when going back to work after a while off. Could you try a phased return to ease yourself in? Have you been abel to identify if there’s anything in particular at work triggering things off for you that you could change, such as lighting? (I turn my over head lights off and bought a cover for my screen, a standing lamp and sit next to a window with lots of natural light.)

I do think over time, your brain should become used to this new environment- it’s just kicking up a bit of a fuss at first because it’s not used to it. Try to do as much as you can do minimise the harsh effects of whatever your new environment is and take regular breaks away from a screen/bad lighting.

I would suggest being as brave as possible and sticking it out if you can. I found that although work was horrendous at first, it actually has now become my safe place. I can sit at my desk and although I feel horrendous, I know that I can sit here in this corner and nothing terrible will happen. I won’t fall down, I won’t fall off my chair, even if I feel like it.

Try to minimise your triggers in every other way possible so that you can better cope with the work environment. Take time out for yourself in the evenings and weekends to relax if you can, try to eat well, sleep well, drink well (non alcoholic, zzzz) medicate well… All the usual stuff. Keep stress to a minimum. (I know thats hard too.)

I always think that staying in the house is actually more detrimental than going out. You can go crazy in those 4 walls, and end up feeling worse than ever. If I go out, I often realise I don’t feel as bad as I thought I did. So perhaps get out, but don’t spend too long in bright shops, or darting about the place?

Just my advice from my experience.

Good luck!


Thank you for taking the time to respond. You’re full of good advice :slight_smile: I have had a phased return but it was only over 5 weeks. I was off from Feb - end of June with Mav. Returned for a week and then was off till November. Had a big op!! Nightmare year.

The reoccurrence of mav has totally knocked me. I often read your posts and always find them to be helpful :slight_smile: I am a teacher so it’s pretty difficult when I’m having an episode, I’m trying to keep my anxiety under control! I worry that I’m going to pass out and that it’s not MAV but something else. I makes me feel so odd!!!

Following my op I get very tired, I think this combined with my return to work has set me off. You give me hope, I have read your posts about the times you have relapsed and then returned to baseline. It makes me feel better when I see this can happen.

I’m trying to get plenty of early nights, eat sensibly. I can’t drink at all!!! Huge trigger for me :frowning: So annoying, not going to let it control me. Hopefully the next drug Dr. Silver suggests will do the trick. The plan is to introduce Toprimate, but I’m frightened of taking it!!! The next suggestion after the Toprimate is sodium valproate. Think i would prefer to try that. Didn’t you have an adverse reaction to Toprimate? How are you getting on?


Oh no- a bit op doesn’t sound like a good ingredient to add to the MAV recipe for disaster, sorry to hear that. :frowning:

I have to admit, I have no idea how I’d cope being a teacher with MAV. I have many friends who are teachers and their jobs sound so full on, they have have time to eat their lunch most days, let alone take a break away from their screen. So stressful and such a demanding job. And you’re up and down all the time, literally. I feel for you.

What I would say is, you have had absolutely MASSIVE triggers- the op and the return to work. It is no wonder that you are feeling like hell. I know that doesn’t help but at least there is an explanation for why you are feeling as you are. I PROMISE you, you WILL return to baseline. This isn’t your new baseline. I know it’s easy to think it, I have thought it many times, you worry so much that this is the new pattern, this is how it is now. But it’s not. You have been dealt a hefty blow and been set back, but when this has happened to me, it seems the brain always remembers the healing it has done and it does snap back if you treat it and yourself kindly. Slow and steady and patiently seems to be the trick. As frustrating as that can be.

Hope you can relax a little over the Christmas holiday.

I know a lot of people are frightened of Topirimate. I’ve been on it 2 years. It has been a great drug for me and I am sure it is the one drug I have read the most anecodatal evidence of it working well for people. It is a strong drug, it will likely produce side effects such as word finding difficult and tingly in the feet or hands… But if you can ignore that (and I think it’s worth putting up with that for its benefits) and if you can stand to push through the other potential side effects of feeling groggy etc for the first month, I’m sure you will see a difference. Most people seem to.

My advice for anyone starting it would be to start low and go slow. A friend through MAV told me her neuro started her at 50mg. 25mg in the morning and 25mg in the eve. This would have killed me in the beginning. I took 25mg at night- at night, so that any groggyness etc can be slept through. I tried to add 25mg in teh day but I couldn’t function. So I take my full 50mg hit at bed time. That’s been fine for me. I did go up to 100mg but came back down as it increased my Alice in Wonderland sound hallucinations.
I know Dr Silver says to stop it if you suffer ANY side effects such as memory probs as it shows it isnt working. I love Dr Silver’s approach to everything but I disagree with this point. If I had stopped at that point, I would never have felt the benefit of Topirimate.

Without a doubt, Topirimate gave me my life back. Clonidine has topped off the remaining 20%. I now just need a miracle cure for the hormonal time of the month and I’d be happy living like this.

You sound like a strong lady. I think you could give Topirimate a fair crack. xx

p.s sorry, I just realised I’ve preached on a bit. Sorry x

Hi everyone,

I e mailed Dr Silver’s secretary for some advice as I am not seeing him till the 30th . His secretary is fabulous, very helpful and she very kindly asked him a few questions on my behalf. I explained that i was having a relapse, struggling and at a bit of a loss. Anyway, I thought I would post what his advice was. Please note that this advice is with me/my history in mind so will not necessarily be suitable for all.

‘I would suggest holding tight for a further 2-3 weeks to see if settles. Failing that, I could do some occipital nerve blocks with injection of local anaesthetic at back of scalp which may help in approximately 50% for up to days to months, we could consider cranial botox (which is often very effective), or she could add in a second drug such as topiramate as per previous letter.
It is not easy to predict how she will best respond but for moment would suggest seeing if all settles a bit in coming 2-3 weeks +/- GON block’

I am not sure what +/- GON block is. Any ideas?!!


so did he mean the nerve blocks and botox to help only with the dizziness or was this in reference to headaches? do u get headaches?

My e mail was all about my dizziness! I used to get horrific migraine headaches, since I’ve been on meds I rarely get them. I do still get headaches but they’re not as bad as they used to be.

Dr Silver sees the headaches and the dizziness as all part of the same disease. When I had my first appointment with him I couldn’t understand why he was so interested in my head pain and not my dizziness as that was the most problematic. I now know that he was being very thorough and trying to identify whether I really was a MAV patient.
I would imagine he would hope that the nerve blocks etc would help with both headaches and dizziness. He is fully aware that my main problem is dizziness.


ok yea i dont know that those are used really just for dizziness. if you only get dizzy when u get a headache and then if you stop the headaches then theoretically you stop the dizziness. but what if u are dizzy all the time and dont get headaches anymore (like you and I)??? i am skeptical but i am no expert.

It’s very confusing isn’t it! I mean, when we are dizzy 24/7 are we having a continuous migraine?! One that lasts for months?!! This is how I think of it but I’m not quite sure that’s how it works! Xx

i personally believe mav and migraine headaches are almost complete separate problems. every single migraine med i have tried has worked wonderfully on my migraines but i have had very little luck with the dizziness. If it were that easy I would be 99% and not be on this forum in the first place. I think the treatment of migraine headaches in general is much more successful and researched and treating mav the same way is like randomly throwing darts out and seeing what you hit if anything. i resent the fact that they are treated the same because in many if not all cases treatment for mav is not successful. when people on this forum post articles about “migraine” research most of the articles are referring to headahces and have nothing to do with dizziness so its pretty useless for mav sufferers.

I just don’t know Sarah… It’s so complicated!! I do know I feel rubbish! I’ve been asleep and just woken feeling atrocious!!! Grrrr! So annoying! Xxx

I was completely disabled for most of a year and then returned to work as a busy physician after finding the right neurologist. Anyway, every time I have a bad day, I think “How can I work? This is too much!”. Then I feel better the next day and wonder what was I thinking yesterday? A few weeks ago, I had to go home at lunch because a huge winter storm was blowing in and I was knocked flat. Anyway, you WILL get better. It’s so hard to imagine when you’re going through a rough time, but it WILL happen. Stress is a huge trigger as others have said.
As for that time of the month, I take continuous oral contraceptives just for migraine prevention. (responding to previous post).

Good luck and may the drugs be with you! And please take a leave of absence if work is just too much. It happens, and it’s not the end of the world. I know it feels awful because then you have to admit how sick you are, but that’s life. When I’m not feeling well, I need rest. Pushing myself is never the answer. Is there any way you could transition to an easier job - administration? I don’t know.

Whatever you decide to do, try and keep triggers to a minimum. One thing is to keep your sleep pattern as regular as possible. Whether you shop or doing something more restful, try to not sleep in too much or alter your schedule a lot. Being a teacher is a tough one to be in and have this disease. I don’t know how forgiving your district is - in mine, I barely got to eat lunch ever and it just totally did me in. That and a lot of other chaos and stress.

Wish I could help. I’m going through a relapse too, it’s been going on three weeks or so now. No idea what’s caused it which is even more infuriating.

I think you can be given all the advice in the world but at the end of the day it’s up do you how you deal with your relapse and the next steps you take.

I read a good quote that said ‘everything seems impossible until it is done’. I’m lucky I work in administration but I still have a lot of triggers, lights, computers, moving around, lots of office movement, also have to work with customers a few times a week which can be quite busy and stressful so even though it’s administration work it’s still really bloody hard. But everything is hard when like this… I’ve got to that point now where I find working is one of the easier things to do, it’s everything else now that’s out of my comfort zone that I struggle thing. I think you have to give it time, your body will hopefully adjust to the working life. There will be days here and there that you feel rubbish. I still have them often and sometimes I wake up thinking I couldn’t possibly work or do anything today but I get so angry and somehow manage to get ready and drag my sorry butt in to the office and usually 9/10 I will feel better once I’ve done that.

You have to find the balance that works for you. I enjoy working, being at home I associate with being ill and I always feel worse when I’m stuck at home and my mind wreaks havoc on me. I find work a much needed distraction. Although my contract is ending next Friday so I will be officially unemployed! Argh. :?

Wish you all the best and hope the relapse is short lived.


hi everyone :slight_smile:

Just a little update. Things did settle down after about 2 weeks, thank goodness. I also had an appointment with Dr Silver and he managed to put my mind at rest. He told me to try not to panic, that it was perfectly normal and not really anything to worry about. he reminded me of getting enough sleep, drinking plenty of fluids, no caffeine etc. basically his advice was to ride the storm and eventually it will pass :slight_smile: I thought he may introduce another med but he did not feel it necessary. He did say if I worsened that I could come and see him before my next scheduled appointment and we could try the nerve block.

It was interesting to hear that the panic and anxiety is just part of the migraine, that helped me a lot to hear that…think I am losing the plot sometimes!!!

glad to hear that things are back on track kathy. anyone would panic this problem is like being constantly at war and you dont know when u are going to get shot again. i dont know if it is part of mav or just the nature of having such a scary health problem.

hi I know this is an old post but how are you doing now? any more relapses? im just having my fist relapse after 5 yrs its so disheartening, hope your ok and free of this rubbish!