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I don't want to give up my life- dizzy


#1

I’m trying to find strength to continue my every day life. It’s so hard when your head is rolling, your eyes are blurry and your balance is like a drunken.

Please I need positives to keep me going. I need to know I will get out of this dark hole!


#2

Hi

I know. It’s rough, it’s horrid, it’s totally unfair and if you could quickly explain it to somebody you just met in the street they’d find it unbelievable and probably think you’d just finally lost the plot completely. If you are in the UK this Heat Wave certainly isn’t helping any either. I pray for rain constantly.

We’ve spoken before. Your MAV is obviously having a very adverse effect and medication (+ maybe lifestyle-changes, diet etc) is what you need. What are you doing now positively to achieve a med that works for you. Might be good idea to channel a bit of your frustration into finding the solution. Send some emails, make some phone calls. Keep fingers crossed, everybody isn’t away on hols and you can get to make some appointments. Then, re-read all those Success Stories and repeat regularly to yourself ‘this is not for ever. I WILL get it under control with time’. You might find you do need to take that long, hard look at your current life and make some temporary adjustments. Look at triggers and try to reduce them. Maybe reduce the stresses in your life and make more quiet ‘me’ time for the duration. Try reading up a bit on the condition. I find it easier if I understand the whys and wherefores. Some people find it increases their worry levels. YOU know what’s best for YOU. Be kind to yourself and try not to beat yourself up about it all too much.

You’re not alone. I know you said you’ve tried meds that didn’t suit, on here we are nearly all in that boat. It’s a struggle but the only way is to push forward - tiny steps if necessary will get you there eventually - and try to find that solution. It’s out there somewhere. Bound to be. You just have to be proactive enough to find it.

Have you seen the neurologist yet?


#3

Thank you for always taking the time to answer me.

I am seeing him finally on Monday next week. And I am needing this to ensure he helps me with this, getting me on meds.

I would love to wake up and not fight to just stand upright. I don’t know how I have the energy to do that every day of my life.

I joined back at gymnastics, which I use to do before all this rubbish. I was doing good for 2 weeks. But then the rolling head and seeing ligts came full force. I tried nortriptyline which then gave me sever head pain, just recently.

I feel like I spend so much time in bed. I can’t hardly do any thing

I miss my life, my heart and my soul :frowning:


#4

:dizzy_face:

Wow, I think that is just a little ambitious in the circumstances, but admire you for pushing it! :slight_smile:

Keep going, it will get better!


#5

Ah that’s obviously your answer. You do need to look at lifestyle and make some temporary changes. I’d say the gym’s out for a while. Ask the neurologist what he thinks. IMHO if you have unstable MAV - not controlled by meds - working out at the gym is challenging it one step too far. MAV means you have an irritated brain which is currently having to use more of its power temporarily to just keep you upright so it hasn’t spare capacity for much else. Read through the Most Popular Posts on Welcome Section. You should find a write up from Dr S comparing capacity to a jug filling and how when it overflows MAV symptoms really ramp up. I think you’ll find that’s what’s happened to you. You need to conserve some energy for getting out of bed. You really do. Try not to worry too much. There’s always somebody out there in a worse position. I’ve had many times when I had no balance at all - completely knocked it out - and had to stay in bed because I couldn’t stand at all. I’m not alone there either. Ease up until you’ve seen the neurologist at the very least.


#6

I can’t. Movement was my life. My hobbies. Gymnastics, dance and gym. Then I was bed bound for one month could not walk like you. It was like a whirlpool in my head. I held on to the walls, the sink. I couldn’t look in the mirror because my eyes were going nuts and i couldn’t focus them.
That has eased a bit but i still fight every day for balance, deal with light sensitivity and ear pressure.

I’ll see what the neuro says. I need to go on a strict diet. Caffiene very hard for me to give up :frowning:


#7

It’s not ambitious. I was feeling good actually…much less dizzy doing the flips lol …it’s just standing and walking that’s my problem…


#8

That sound’s just like MAV to me.

not all neurologists insist on the diet. Mine didn’t. Caffiene certainly hard. I love tea. I tried once to quit caffiene but gave up on day 3. The aim of the diet is to identify migraine fod and drink triggers so you can eliminate them. Triggers aren’t necessarily always food. Various types of light are major for me as it seems gymnastics are for you. As the neurologist said to me when I walked in on a dark rainy winter day wearing 2 pairs of sunglasses, ‘everything’s gone a bit hyper’. The meds are supposed to increase the brain tolerance threshold to triggers,


#9

That’s because of ‘habituation’. ‘Doing the flips’ is a trained and practised skill. Though why the same doesn’t apply to standing/walking I don’t know but it doesn’t seem to. Lots of plp who get motion sickness never get sick in cars, only on planes and boats and, in my husband’s case, trains because they regularly travel by car but not in/on the others. The brain’s amazing when you think abt it.


#10

I also think there’s possibly another thing going on … I got the same with cycling and running (far fewer symptoms). I suspect that moving around too much your brain stops using your inner ears so much as the movement is too jerky. You start to use muscle feedback and joint angle etc. more. Also with cycling you are combining the inputs of two ears all the time, whereas with walking the reliance switches to each in turn.


#11

I’m always amazed when plp with MAV start talking abt how they run easier than walk. Really makes me think their “MAV” and my “MAV” must be very different conditions. We can’t both be in the same plane. No pun intended. I never was a ‘runner’/‘jogger’ of whatever but since MAV I’ve rarely managed a fast-ish walk. Before MAV I could easily have and did sometimes literally run for a bus. No longer.


#12

I completely sympathize with what you are going through.

I also thought about doing gymnastics because I feel more normal when I move a lot. I forced my self to go running everyday for about 6 months because I have a running background. Although the running probably gave me a boost in neurotransmitters, it still didn’t fix much in the long term and I argue that I probably was triggering my head pressure a bit. I was tired a lot and I think my body was spending too much time healing from my workouts instead of healing my brain. I now find that walking is much more helpful because the vascular changes are much less. I can now walk 5-10 miles per day, with very minimal head pressure. Dizziness (rocking and floatiness) is still there but its quite minor.

In the beginning I was very adamant about “powering through”, hoping that some minor lifestyle changes such as diet and relaxation techniques and time would just heal everything. It didn’t really work out that way. In the end, I had to make pretty drastic lifestyle changes and take medication (Verapamil). For me, it was critical to take time off work when trying medications. It’s already miserable to go to work and be dizzy, but to have weird effects from the drugs on top of that was too much. Its all too easy to say the medication wasn’t the right one. When you give yourself permission to be a vegetable at home, it can be easier to accept the side effects of medications. It can also be harder in some ways because you have a lot of idle time to think…

My main advice is to focus on getting rid of the head pressure / aches, even if it makes you change your life drastically. Do anything and everything that helps! And start small with things and give them a week to see changes. Even CoQ10 increased my head pressure for a bit, but I could tell there was a benefit in how I felt so I stuck with it. Always try the lowest possible dose of a medication or supplement. I think people often fail on meds because they don’t start low enough. I always try to start at 1/10 the dose the doctor prescribes. If I notice a slight benefit over the course of a week, then I know I’m on the right track and its just a matter of titrating up.

Diet is tough to change, but I couldn’t deny that it has an effect. I’ve tested it soooo many times. Can I get away with a cup of coffee? Sometimes, yes, but it depends on all the other triggers during the day like stress. The problem is if I get away with it once, I think “see,
coffee is fine!” Weeks go by and I find myself with awful head pressure. Then I quit coffee for a few days and feel a lot better. So I’ve just learned to ditch all those things and just eat a really plain and boring diet (low tyramine). How can I be happy with such a restrictive diet? Well over the course of weeks it reduces my head pressure significantly, so yeah that makes me kind of happy (-: I also think of all the people in this world that are just happy to eat anything…

Anyways, sorry for the long post, but anything you can do to slow down your life and take care of yourself would be helpful. Find the small things that help and let those lead you down the path to recovery. Be wary of activities that seem OK or maybe even helpful but might be triggering you long term (running for me). Keep trying meds at low doses to see if they may be beneficial. Recovery is mostly a psychological feat I think. Its so hard having an injury in the very place that is in charge of making decisions to fix the injury. (-:

I personally have never been so humbled in life. I never ever thought I could go through so much suffering and feel so helpless. It feels like the end of life but its not. I’m positive you will make it through eventually. I’m getting there myself I think.


#13

I’ve got better with time despite never really giving up coffee … or anything else for that matter … so don’t feel too guilty and enjoy a coffee :slight_smile: If you get symptoms, well … that was the cost … but don’t let it worry you :).


#14

Yeah I think walking requires much more vestibular input. With running you spend a fair amount of time in the air, so I think its mostly vision and proprioception.


#15

Yep, I used to run to escape my MAV (this was of course when I wasn’t suffering ridiculous migraines of course).


#16

I would swim to escape mine.


#17

haven’t tried that yet … always freaked me out to think of doing that


#18

The pool is only 4’ deep. Worst case, I stand up. The hardest part is sharing lanes. Visual vertigo would go nuts. It’s better now with Effexor and post VRT. Except, ironically, I used to go really early in the morning to avoid people. I could never sleep during the worst of it. I’d wait around for 4:30 am and my 1 hour swimming escape from MAV. Now I can sleep so I don’t make it to the pool as often even though now it’s easier. More often now I run on the elliptical for an hour in the evening.

There is hope. Diet, lifestyle, multiple med trials. I went from completely disabled in February to maybe 90% now. The other day I kayaked in a bay for 8 miles against the wind and an incoming tide. I realized after I’d forgotten to take Meclizine. I was fine. My husband’s shoulders gave out and we turned around way before I was ready.


#19

I run on the elliptical

Wow! That seems like it would be the worst for me, but honestly I haven’t tried it yet.


#20

I won’t lie, those first 20 minutes are a head down, eyes closed test of willpower. Every. Time. I like it because it’s low impact and won’t trigger a migraine. Plus I can hold on and not rely on my vision to know my place in space.

After the first 20 minutes, MAV clears like the sun coming out and it’s a test of endurance. Afterwards, because it’s a YMCA and has one, I always stop into the chapel and say a prayer of gratitude for both the lessons MAV has taught me and the simple fact of feeling so much better.