I have been reading forums etc and this ‘thing’ seems like its lifelong for most of us its something I always thought anyway but numerous people saying they have tried meds and they didnt work or meds stopped working.
Im really distressed reading these storys my hope is I got well before well 90% back at work etc and I want to be there again Im so scared this wont happen since Ive just had the baby and what if I dont get well again.
Feel so depressed about this please someone give me some hope? May take a break from forums for a while because I feel low as it is
Donna (hug) , please please believe that every one of us on here will get better - we have to believe that otherwise there is no hope. Dr S says every time that I see him that we WILL return to our ‘old self’ (which is what we all wish for right?) but that it will take time. I find it particuarly hard as we are in a culture of take a pill & all will be well, this stupid ‘thing’ isn’t like that & it’s hard to comprehend. Honey, I thought the drugs were working slowly but helping you? X
Donna don’t give up. Your last post on your ami diary was really positive. I take it today has been a bad day but remember good days will come. You have only tried one med haven’t you? There are loads more options yet. There are so many other meds and combinations you can try. Are you going to see a neurologist soon? I think you should try to if you can. Then you can get other options and hopefully they will give you some hope and reassurance that you will get better. I am certain you will because you have before and you WILL again! xxx
Its not as bad as it was and Im grateful but Im still bad though just not as severely dizzy as I was. Im most concerned about the balance thing when walking I feel like Im being pulled to one side its horrid.
I just read something horrible cerebellar ataxia and now Ive convinced myself I might have that instead. This relapse has knocked my confidence and mental health so much more than any other one Ive had. This condition frightens me Im going back to the doctors all I want them to do is refer me to a specialist and they wont.
I guess Im having a meltdown today sorry!X
You can and will get better. You will get your life back.
It takes time and patience. Its 3 steps forward and 2 back with this thing. There are lots of ups and downs but you will get there xx
Try and relax and not to get to stressed out. Worry and stress feed this thing xx
Thankyou Robert I think Im reading too many depressing stories and I have to stop take a break from this mentally x
read the success stories x
— Begin quote from "Blondie"
Im most concerned about the balance thing when walking I feel like Im being pulled to one side its horrid.
I just read something horrible cerebellar ataxia and now Ive convinced myself I might have that instead. This relapse has knocked my confidence… This condition frightens me X
— End quote
Hi Blondie, that was exactly ME too a few years ago! I’m much better now although I wouldn’t have believed that was possible back then. It’s very hard I know to keep your spirits up when things are so difficult but please don’t let go of hope. The walking thing can be especially upsetting I know. It used to irk me no end that I couldn’t do what came so naturally to others. And getting from A to B was such hard work that I could have cried. And sometimes did. Life isn’t perfect now, I still have my bad days, but nothing like a few years ago. Hang on to the hope of better days! They may be just around the corner.
Brenda thankyou what helped in the end time or meds or both ? X
Ultimately it was a change of diet and time. I’d had meds before that but unfortunately they hadn’t worked for me.
How long have you had this Brenda? Its three years for me now but I was stable the last 18 months or so but pregnancy and postpartum have changed my symptoms to this new horrible dizziness when I had this thing under control for so long. When a relapse happens I cant see the colour of the sky anymore especially when its pro-longed X
In all, 41 years, since I was 19. Hit me really badly in my mid forties when I hit perimemopause. Had a huge, life disabling relapse. That’s when I had all the tests and got the MAV diagnosis and all my symptoms up to that point made sense at last. 15 or so years on, my understanding of MAV has grown, I’ve learnt to cope with the bad days much better and my fear and depression, which in the early days crippled me, have lifted. Hope you’ll see the colour of the sky again before too long.
How many weeks postpartum are you? Having a baby wreaks havoc on our bodies, especially with the flood of hormones that were different during pregnancy. Hormones can play a huge role in your relapse right now. Give your body some time to “heal” and get straightened back out. It took 9 months to grow that beautiful baby, it certainly takes time to heal… If you had control of your symptoms in the past you will gain control again. I have had multiple mini relapses and I immediatley feel the panic of thinking about all of the “what if’s.” We have to remember that sometimes we have to expect to feel bad. Shoot, my so called “normal” non migranous co workers call out sick more than me, and I find I get upset when I have a bad day!!! I think we sometimes expect too much from ourselves, I know I certainly do. If youre feeling bad, sifting through these posts can depress you if you are only focusing on the negatives. Try and find some of the more positive stories or if you need to (like you said) give this a break for a little while. You will know when you are ready to come back. Hang in there… I know you will get better!
Hi Blonide -
I can really relate to you and your story just breaks my heart. For me this whole MAV thing first came about 2 months after having my daughter. I struggled for months not knowing what the heck was wrong with me and got shuffled from doctor to doctor. When she was about 8 months old I finally got a diagnosis and started treatment. I’m still not 100% but I’m improving. It takes time but it will happen. I also started seeing a therapist and that has helped me A LOT and I noticed that once my mental health started to improve my physical health did too. Your hormones will settle more and more every day and that will help too. Just take a deep breath and look at your beautiful baby. I remember being where you are and feeling like I was never going to feel well again and feeling hopeless, but I can tell you it will get better. I am slowly but surely coming out the other side of it and I promise you, you will too. It may take a long time, but just take it one day at a time. Be thankful for the good days, and do what you have to to get through the bad ones and put them behind you.
New to this MAV does this ever go away? Even for a period of time?