Healing process

Coping šŸ¤¦ā€ā™€ļø
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I know there arenā€™t many who hang around here after theyā€™ve got better, but for those who have, how long did it take for you to get your life back again? Anyone who was bedbound, how long did it take to be yourself again?
What meds did you take?
How long before you noticed the first signs of improvement?

Anyone specifically on flunarizine, how long before you started improving and what dose?

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I am an old member, from the time when Scott was the admin. My diagnosis is ā€œleft peripheral vestibular system lesionā€, not MAV. I was born with this condition
I have learned a lot in the past 10 years. After treatment with SSRI fluoxetine my headaches reduced significantly, but it doesnā€™t touch the dizziness part. For dizziness I have to take benzos daily. I can work, play, go out and enjoy my life thanks to benzos.

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Hi. As we discussed before there are very few people here on Flunarizine so we donā€™t know that much about it. I have read that itā€™s effect is cumulative and it can take a long time to work. Experts do state all preventatives can take a long time to work. Up to four months is often quoted.

As you know I take Propranolol and I have experienced vertigo attacks that lasted more than a week and spent intervals of a week and more in bed unable to stand. Some people on here have spent much longer sustained periods in bed. Months in some cases. For some idea of timescale have a look through my personal diary. My MAV went chronic in December 2014; Iā€™m still ā€˜getting my life backā€™. Propranolol for me was a slow worker and it is very dose dependent. I was lucky in that, retrospectively, it seemed to stop most of my acute bedridden vertigo attacks from the word go. Not, of course that I knew that at the beginning. Other symptoms reduced very gradually over many months. Nothing was so sudden that I can identify any specific time periods apart from saying it took 8 months before it started, intermittently at first, to stop the 24/7 dizziness. Everything else was, and still is, a gradual slide back to my pre-MAV state.

There was no moment when I said ā€˜ This is It, Iā€™m better nowā€™. All symptoms seemed to ease up intermittently at first, then, return. Gradually staying away longer each time. They didnā€™t just stop. That regularly surprised and disappointed me.

I think Amyā€™s recent phone conversation with her consultant recently most likely sums up expected MAV progress:

Helen

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I was really lucky with drugs. Second drug (Ami) gave me relief in days and upping a month later got rid of dizziness and migraines (but not imbalance, nor vestibular attacks!).

Recovery from chronic onset is ongoing but after 3 years I had started to do really well.

Iā€™m still in the process of rebuilding my life now that my condition is under control. As part of all this I lost my career. I really admire people who keep theirs going through all this!!

For those that have a recovery trajectory, I reckon recovery to ā€˜normal lifeā€™ (being able to forget the condition most of the time) takes anywhere between 2 and 7 years depending on the individual. But there is every chance it could be a lot longer. Thatā€™s my hunch.

This thing has a looong tail.

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Upon further reflection @jojo65 is the only person currently active on here I know has taken it. I think she quit it because it didnā€™t seem to work for her but might be worth asking her about her timescale to reaching that conclusion. Helen

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Iā€™ve taken it as well. Although it did not work for me. Neurologist said he had some great outcomes with other patients. Our responses are individual, arenā€™t they?

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Thanks for the replies everyone.

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Good Evening
Yes i did trial a couple of months worth of Flunazarine. My neuro spoke quite highly of it. I cant recall having any bad side effects as such but it made me very very tired getting up early for work in the morning. Its fair to say i didnt give it long enough to truly see how well it could have helped me but the 8 weeks i did take it i didnt see a massive improvement but that doesnt mean it cant work wonders for others. I think my neuro was slightly disappointed i couldnt tolerate the tiredness caused by it she had high hopes
Jo

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Thanks for sharing your experience. My neuro really rates it too. Iā€™ve been on it 6 weeks and have been feeling alot of improvement except for the past 2 days. I donā€™t feel good now and I admit i really feel upset about it. I was doing so well, it was wonderful.

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That is the Ups n Downs of MAV. I know exactly how you feel. If you recall, I posted

You just gotta keep the faith. It doesnā€™t just suddenly go away. Six weeks on meds is just a blip in time with MAV. So pleased you seem to have hit upon the right formula at last now you just gotta keep your spirits up and wait it out. Helen

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Thank you Helen, I really appreciate the positive advice. Fingers crossed.

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If youā€™ve had improvement after just six weeks on the first drug trialled under your new consultant, in MAV terms, that is more than positive, it is verging on a Success Story. Just grit your teeth and steel yourself through the Downs. Keep reminding yourself you are travelling in the right direction. Thatā€™s Good News. Helen

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Thanks. I hope itā€™s a success but thereā€™s always the doubt this ā€œdownā€ will be long lasting or the medā€™s stopped working or it was just coincedence etc etc. I had loads of confidence and was feeling more like myself - my emotions were normal instead of being a mess every day. But now that fear has crept back in since i donā€™t feel so good. Partly because the mav is messing up my emotions again. I cried buckets this morning and i havenā€™t felt that at all in 6 weeks since i started the meds. Iā€™m feeling like, ā€œoh no, not this again. Please donā€™t come back again.ā€

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Relapses can do that. But remember to recognise them for the temporary setbacks they are.

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Thanks. Hopefully it is only temporary.

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Hi
You are doing so well i think. 6 weeks and feeling a lot better is a marvelous result. Dont let a couple of bad days drag you back down. You are on a good med and its clearly workingā€¦as Helen says its just a blip
Keep going you doing great
Joā¤

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I donā€™t mean to be flippant but to me its like being an alcoholic you are never ut of the woods. I am better and have more good days than bad, but it could change at any time. It has before.

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Or there are simply less and less trees the further you go :wink:

There were several major milestones for me which helped me realise I was making progress:

  1. No more dizziness (controlled by meds)
  2. No more (or rare) anxiety
  3. No more vestibular attacks
  4. Able to give up meds
  5. No more imbalance
  6. No more relapses.

(In that order)

Those were spread across a period of years.

So some people are eventually able to give up meds. Thatā€™s a great milestone. Not everyone though. I still had significant symptoms at that point but decided to tackle them without meds to optimise chance of compensation and eliminate side effects.

PS Iā€™m hoping one day to get to the final two milestones:

  1. No more tinnitus
  2. Can drink caffeine

:wink:

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Good list of ā€˜milestonesā€™. I guess thatā€™s the way it goes for most. Certainly for me although, I donā€™t ever necessarily expect to get off meds so personally Iā€™d need to move (4) down to (6). Helen

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Yes Iā€™m sure itā€™s a very personal journey.