This is not the 1st time I’ve been asked this question , and you all probably have too.
But really think about it for a second, why would anyone ask this?
I found myself saying on no I do the diet I live the lifestyle I’ve had a little success with medication In that I have responded so no I will get better it just takes time.
The more I spoke the more I stopped believing myself, 18 months I’ve been I’ll and the success I’m talking about is I’m 50% to 60% which to me means I can walk down the street just, I can forget for all of 10 mins just and I can drag myself out of bed to work a few hours to pay the bills.
But no I’m beginning to believe I won’t get better.
My consultant is the best I also have a dr who believes in mav, although every now and again
I come into contact with my old Gp who refuses to help me.
I’ve had some pretty dark days when I was bed bound but since then ive kept positive and kept seeing the good in life trying to enjoy what I can when I can, being there for people who actually think they’ve been there for me they haven’t but I don’t blame them they just don’t get it.
But now being asked again will you always be this way what an evil question, would you say it to someone B4 you all got ill? erm no I keep my suffering to myself only my partner knows the true extent and he supports me every step of the way for that I am thank full.
I’ve recently overdone things and now I’m back at 40% and struggling, to keep smiling.
Please someone tell me I/we will get through this. I’m in my 20s and am finding it so hard to keep faith in any kid if future after 18 months of being beaten more and more by this crap
Hiya
I don’t think anybody can tell you 100%, but many people have had success, some with meds and diet and some just diet alone. Maybe you just need to find the med for you or the combo of mess for you. I personally am on a combo of meds and the diet but there are people who have had success on the diet alone. It’s good that you have support. Just keep trying meds and keep your chin up. My consultant said he can pretty much count on one hand the amount of people who have not gotten better. He said it just takes time. Be careful on the diet as some things contains MSG display the msg under lots of different names. And also have a read through the success stories on the board.
Shenay x
Hi
I started to feel unwell after a virus about 5months ago, and as my mum has this condition she put me on the diet straight away and by the time I saw her consultant 5-6weeks later I went from feeling a bass line of 70-80% and having bad episodes where I was really bad. To being 100%!! I am still on the diet and will see the consultant in October. But at the moment I am 100% everyday and have not had any bad episodes since.
James x
i would say something like “i prefer not to speculate on the future” or something like that-that is a crappy thing to ask someone with a chronic illness. ugh.
We will all get better, that’s certain. My neuro has told me in no uncertain terms - you will get better but you have to BE PATIENT. It takes a long time, especially for someone like me who’s vestibular system has forgotten what is normal. You just have to find the right meds, and be sensible.
It takes time, but you can see by the people who are no longer on this forum that we do get better! xxx
Twister I can relate to how you feel. Even though I have had quite a lot of better times with MAV over the last 4.5 years, I do find it hard to imagine being 100% or not having to worry about how I feel each day. All we can do is just try and enjoy the things that we can and the good times while they last!
WTC, how are you doing? It’s great you are still keeping positive! Are you still on propranolol and is it helping? x
You have a supportive Doctor and partner so that’s a big plus.
Everything else that is in any way toxic such as food, environment and people has to be pushed aside.
People generally are not good around illness, and they are always clinging to this false idea that we have full control
of things when we don’t. always they want to know why? why? why? If I bloody knew, I may be able to fix it.
You tell people and then they suggest “rescue remedy”, are you kidding me!!
I have a son with a life-threatening illness, first thing people want to know is his life expectancy. Hah! I say do you know yours!
They have no concept how upsetting they are, they try to blame, to judge. You are living with a disorder, where is the empathy?
The best thing is if someone can just acknowledge the big pile of crap you’ve fallen into :shock:
Yes the success stories do help think I know them all by heart.
I find its people I barely know who ask me like you say Rezbi people are just ignorant to the extra suffering they cause, makes me so angry that they would ask you that about your son. I suppose as you say we just have to keep rising above it.
I got asked it again yesterday but I just said, would you like to think I will be, no they said, neither do I I said then they looked quite embarrassed.
I just felt more in control this time because I’d ranted here so felt could cope better.
I’m on my 5th med trial Jem pizotifen and it is helping I just feel now working is making me worse.
I am lucky my partner gets it but I’m just bit fed up of waiting now to start my life again. I wish I could see the finish line.
I do believe I/we will get better it just gets harder the longer your ill I think. Many people whom were on here new when I was have got better.
Twister I can relate to how you feel. Even though I have had quite a lot of better times with MAV over the last 4.5 years, I do find it hard to imagine being 100% or not having to worry about how I feel each day. All we can do is just try and enjoy the things that we can and the good times while they last!
WTC, how are you doing? It’s great you are still keeping positive! Are you still on propranolol and is it helping? x
— End quote
Hi Jem, i can’t say it’s helped yet but it cetainly hasn’t done me any harm. I’ve not had any side effects apart from reduced BP and heart rate, but that’s fine! Unfortunately the past few days i’ve had crippling fatigure; but i think this is either due to my dose increase up to 40mg or it’s the weather or something! All these thunder storms! Hard to keep track!
That’s good that it hasn’t given you any bad side effects. Yes the crippling fatigue has always come along with MAV for me but it got a lot better once I gave up work. If I try to do too much I get hit by it but most days it is under control. This weather is certainly playing havoc with me, I keep feeling really hot and lightheaded. Every little thing makes me worry in case I am going worse. Are you going to add another med or trial something else if the dizziness doesn’t improve on propranolol soon? xx
The plan is for me to try pizotifen next… but i need to give the 40mg max dose of propranolol time to work, so will be on this until sep/oct i should think. So boring trialling isn’t it!
How long have you had this now Jem, remind me? Are you having any joy with meds at the moment? xx
At least you will know what is working and what isn’t.
I have had it 4.5 years now but was undiagnosed until a year ago. I have been on nori for nearly a year and gabapentin at a very low dose since May. I am struggling to increase it as it makes me so tired though. I am waiting until Dr S returns from annual leave in a few weeks to see what he thinks I should do next x
Thank goodness for your diagnosis! Just really go for it inspite of the fatigue, i always give myself 2 weeks at total fatigue before i lower the dose again or come off… enough time for your body to adjust xx
Yes I had to figure it out by myself really. Not being a doctor it took me 3.5 years and a bad relapse to work it out with the help of this website but I got there in the end. Yes you might be right Dr S may tell me to just go for it with the fatigue for a bit and see what happens. I have been on 100mg for 6 weeks or more and I did try taking it earlier again the other day and I still felt pretty spaced out and tired so it may be that I am just not adapting to it enough to take it several times a day x
