How well do we get, realistic?

I got MAV in November 2010. It hit out of nowhere. I had periods of dizziness before, but it always disappeared after 1-6 weeks. But not this time.
I am much better than then. Much much. But I have days where I prefer my bed and I have a hard time being alone with my two children (2½ and 4½). I have kept my part time job all the way through but my school I have been missing, and have not been able to do both.

When I come home from work I am not for any help; my boyfriend is a hero.
I’m dizzy, having headache, ear pain and pressure, nausea etc. Mini spins and weird rocking feeling of my surroundings. Well, you all know. I had the DX in October 2011. Tried the diet (it actualy made me a little worse!?) and am on my second Nori trial. I think it might have a effect. I have symptoms every day. Most of the time. I also have days where I am okay. But never better than okay.

I’m at the moment spending a lot of brain capacity trying to find out how good I will be!? I am hopefully finishing school in December and I keep wondering what will happen to me. Will I be able to have a job and to be a mum or will it be like this where I have to choose? Will I be able to travel with my family again? Will I have to keep struggling through the day? All the time being almost phobic about not doing things that can trigger the dizziness? Is part of the healing process also to accept that dizziness and the other symptoms will be a part off my every day life? I have to do things with the dizziness, instead of spending my time building this semi-world around myself, trying to avoid the discomfort, all the time? Or is it realistic to get a life where you enjoy the every-day-thing because I feel fine again?

What do you think? Is it possible to be fine again or is the “mission” to find way to live with this? Beat it or cope with it?

I’m one of the people who has gotten very well. I think it’s fair to say that not everyone will be as successful as I have been in finding the right dose of the right medication as quickly as I did (less than a year from the time of my first dizzy spell). But I did get lucky: I got referred early on to one of the authors of the emedicine article on MAV and he quickly diagnosed me, so I wasn’t spending a lot of months wondering what it was that I had. And I think the fact that I had a few extra pounds to lose helped with the choice of Topamax for me (since it can have a side effect of weight loss, which it did for me). As it turns out, Topamax has worked well, though it’s not without its drawbacks.

But the benefits have far outweighed the problems I’ve had with it! I’m living a life without dizziness. I’ve had a couple rare “wobbly” breakthrough moments, but I’m not even sure it was MAV since I’d had poor sleep - could have been sleep deprivation exhaustion.

If the diet didn’t work, how about other lifestyle changes, like a regular bedtime and getting up in the morning time schedule? Regular meal schedule? Staying well hydrated? Regular exercise, even if it’s just a brisk walk most days of the week? Some migraine experts think those things are essential but often overlooked. Our migraine brains crave routine and hate surprises - they bite us back when we surprise them. That’s why even travel to a time zone that’s just one hour different can have a huge impact on one of us.

You are actually fairly new to this - your diagnosis in October 2011 makes you a “newbie” as many people, once diagnosed, will start on a medication at a very low dose (one that wouldn’t be expected to be therapeutic) and slowly titrate up over a period of many months, waiting and hoping and not even knowing if this is the right drug for them. It’s hard to be patient, but this is a condition that unfortunately demands it.

I hope the Nori will do it for you! If not, there are many other options. Don’t give up hope! We all get down at times about this, but try to remember that this won’t kill you and that you do have other options yet to try. Take care.

Dr. SS Surinthiran, an expert in the UK tells his patients that they WILL get better and live a normal life without dizziness interfering. He deals with dizzy patients all day every day, and has only been unable to help 5 people in his career.

Nortriptyline is the best choice in my opinion, just be patient with it.

1 Like

Thank you so much, both!
It gave me so much hope.

Mary Alice; Routine every day is without doubt working for me. If I get my sleep regularly I am better. Unfortunately my oldest has astma, and in the winter time I am sitting up with her in the night giving spacer. But thank you for tuning me in to the routine-thing again!

Ichbindarren; that makes me so glad to hear. I do not think I am one of the 5. Because I already is capable of doing a lot.

I guess the reason this is coming up now is, that I have to give all I have to finish my studies. And I was just wondering; will I ever be able to work anyway? So giving all I have (again) for a period seemed so silly if I never have the carrier I am hoping for…
And maybe I just reached a point where; “giving all I have for a period” isnt possible any-more. I am just so tired and so tired os strugling throgh the day.

Today the sun is shining, my children are in the zoo, so I can studie, laying down :slight_smile: Thanks for your replies, on the grey day yesterday…

Keep on pushing through to reach your goal…you CAN do it! Even if you were to get a little worse for a bit from the school you can come back from that. Your schooling and degree can never be taken away from you. The future may be unknown and you may feel helpless but like my husband tells me when I say “what if I never get better?”…He says “what if you do?”. I hold onto that and try to keep on going while taking care of myself. I think you would feel worse if you gave up now when you are so close. Take care of you, and come here for support. There’s nobody that understands better than people who are walking the walk :slight_smile:

Hey there! I am coming up on a year with diagnosed MAV. I work fulltime and am taking 3 masters classes at the moment. For the most part I feel decent. I am happy as long as I am functioning. I missed 12 weeks of work over this and returned because I had to, not necessarily because I was better. I have fought through some rough days, but I have not felt as bad as when this all started. Am I 100%…no, but I can live like this as long as I can do the things I want. I took a risk heading to school in september just a little over a month after I returned to work, but I survived and ended up doing just fine. I actually found when school was done is when the MAV acted up more…I think it was the stress let down. Go back to school, don’t let this stop you! If you can’t handle it, you can withdraw without penalty in a certain time frame. You may find that it takes some of the stress off of feeling bad, and that you actually feel better. You will do the things you have dreamed of and wanted. It’s hard not thinking negatively, but you will definitely find a way to live and move on. I thought my life was over this time last year…wouldve never thought I would be here now. Is it scary thinking that it may come back…yes, but I can’t live in fear. I have to trust that I will find another happy place and you will too. Best wishes!

Been reading your posts and it just makes me feel so good to hear that there is light at the end of the tunnel. It’s the fear of the unknown, of what the future holds, if the symptoms are going to get worse. But like you said, we won,t stay dizzy forever, and there is help. Luckily for me, my floatiness is intermittent, and comes in waves. The worst l have had is 2 months of floatiness and that was last year in Aug. I have many little attacks since, which are very scary because l think to myself is this the start of another big one, and it’s usually not, which is very re-assuring.

Again, the best news l have heard is the doctor who has cured most of his patients. That is music to my ears and gives me such hope. I love hearing this.
So glad this board exists, it would be very lonely without it. It has helped me so much.

:smiley:

Sue

Absolutely you (we) can get better. I’ve gone months, even years at a time with only the occasional migraine. Sometimes we relapse, (I have) but I am confident of getting well again. Unfortunately I can’t change my brain (would prefer one that is a lot better at maths and financial acumen) so I’ll always be a migraineur so I control what I can but I don’t let it rule my life.

Hang in there!

Hi

well I have lived with the symptoms for nearly 5 years now 24/7. The first 3.5 years were hell. Then I started taking Amitriptiline starting on 10mg finally raising it to 50mg. I have to say the past year has been easier,certainly not free of symptoms but cope better. I even experienced one day were I felt relatively normal unfortunatly that did not last. However that day one great day last summer gave me hope that I can get better. I am currently Going through a tough time of things these lat 2 weeks I am guessing it is because I weened myself off of the amitriptiline a month ago. Heavy head,slow vision,lifting floor have all come back big time. I am to see Dr Surenthiran soon it will be my first appointment with him. I hope he can finally help me. I will be back to keep you all updated.

1 Like

— Begin quote from "Jayb"

I am to see Dr Surenthiran soon it will be my first appointment with him. I hope he can finally help me. I will be back to keep you all updated.

— End quote

Hi there Jayb

I too am under Dr S so I wanted to say hi and to give you some hope that he is a very knowledgable, kind and proactive doctor. Are you seeing him privately at Blackheath or NHS at Medway? (If at Medway, leave plenty of time to get there because parking is a nightmare!).

I know he favours Nori, Gabapentin, Pregabalin so he may go this route with you. How long were you on the Ami for and why did you decide to ween off of it?

Wishing you well.

I can honestly say that I am improving each week and that I am now around 90% better. I can go for days without thinking about dizziness. Previously, I could not go half an hour without feeling like I was about to fall over. I lived in panic and fear for over a year – all day, every day.

For right now, at least, I am a lot better, to the point where this condition is just a nuisance, not even as bad as a cold, more like a muscle strain.

Celexa is really working for me. I cannot guarantee that it won’t poop out, returning me to where I was a year ago. But for right now, I am happy, and I have this condition under control.

Thank you all. It really helps to hear that some has gotten much better. Its hard to imagine, when things are bad.

Best from Line

Hi Line,

While I have my down times with mini relapses of neck pain and what feels like fibromyalgia and excessive fatigue, I am light years ahead of where I was in 2003/4. Back then I was thinking the same things you are. How will I work? How will I complete my studies? What future can I possibly have with this? That sort of thinking would really wind me up too.

But I got onto a good med at that time, worked out I was a migraineur, started the lifestyle modifications and today I hold down a full time job occasionally flying between cities and going for holidays like everyone else. I definitely need to take it easy and cannot go crazy (which I often push anyway and pay) but it’s all OK. You will get there too.

S

I have been at around 90-95% wellness plenty of times and in total much more time than I’ve been sick, so yes, things will very likely get MUCH better for you and life will be pretty much normal again.

I’m now used to that 5-10% defecit and just accept it, ignore it and get on with enjoying life. I know that sometimes I will get sick and may be that way for several weeks or months at a time. What works for me is - when I am sick - don’t really plan anything. Just take it easy and wait patiently to get better. If I plan too much it stresses me out if I have to cancel or feel crap on the day. But when I’m well - just go for it and live life normally and have fun and do whatever I want to do.

— Begin quote from "Victoria"

What works for me is - when I am sick - don’t really plan anything.

— End quote

so how does a trip to bali fit with the “don’t really plan anything” routine? :lol:

— Begin quote from "lorcalon"

— Begin quote from "Victoria"

What works for me is - when I am sick - don’t really plan anything.

— End quote

so how does a trip to bali fit with the “don’t really plan anything” routine? :lol:

— End quote

Ha ha - good question! Well, the decision to go was spontaneous - ‘Oh look! Jetstar is having a sale, I can fly to Bali and back for $400! I will lose money if I don’t go (not very good at maths)’. I did book it while in the throes of protracted migraine but with shiny optimisim that ‘by then’ I’d be ‘good to go’. As it happened I had NO MAV issues at all in Bali. So clearly, a trip to Bali is THE CURE!

P.S The Bali Cure was so successful I’ve booked a trip to Turkey in June. If I can swing the airfare I’ll be going via Thailand, with side trips to Finland, Sweden, the UK and home via NYC, LA and Hawaii. I will be an uber human after all that travel! :smiley:

— Begin quote from "Victoria"

The Bali Cure was so successful I’ve booked a trip to Turkey in June. If I can swing the airfare I’ll be going via Thailand, with side trips to Finland, Sweden, the UK and home via NYC, LA and Hawaii. I will be an uber human after all that travel! :smiley:

— End quote

My question is this: when do you actually work? :lol:

Vic- my life is pretty much the same as yours. But for me even when l feel well l finding it hard to plan anything as l don,t know when or if another big one is coming, and just when l get a bit more relaxed well it usually comes with a bang.
Went out last Sat night, and had far too much sparkling wine, felt really terrible the next day, thought what have l done, but recovered pretty quickly the next day. If l was in MAV cycle l could not have gone out. So living is still possible but you just have to wait it out till symptoms pass.

I guess over time you learn to live with it and the anxiety dies down as you figure it’s not life threatening, even though it sure feels that way.
I,ve only had this for 1.5 years, still not sure if it’s getting better or worse yet. Time will tell.
Last year we moved from a coolish climate (Melbourne) to a very warm climate (Noosa)’ and l had more MAV attacks, seems to be settling now after being here for one year. Maybe the humidity played a role in the increase of attacks, and now my brain and body are adjusting to the climate.

So many factors to adjust to now in life, but there is no reason why we can,t live happy lives, it just takes more planning and being a bit more careful with lifestyle factors. I am lucky l can still enjoy my bubbles and wine most weekends. When I was in a bad way though, l didn’t,t drink for a few weeks, but having that first drink after that felt great, it actually, (I think) made me recover much quicker, don,t ask me why this is, just my thoughts.

Sue
:smiley:

Scott and Victoria; Thanks!
Are you feeling uncomfortable while you work, are in the hammock in Bali :wink: etc. Or are you actually feeling okay again? Or are you just used to headache, dizzynes etc.?

We all talk about “normal life” again. And from the outside it seems like Im having a all most normal life, but I feel uncomfortable/crabby most of the time, while being “normal” ;O)

(We have a hammock in our summercabin, no good for MAV)

Everyone is such an inspiration here. I’m so glad I joined. I’ve only had symptoms for 10 weeks (newbie LOL) and it feels like an eternity. I feel as though I will never get better. Reading everyones posts on here really gives me hope. Thank you everyone! I don’t feel so all alone anymore either :smiley:
I am a big golfer and have problems standing up for any amount of time without getting dizzy. I just want to get back to playing so badly. Now that I see alot of people have gotten their life back, I have something to look forward to!

Kathy G