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Brain stem relapse.

Hello everyone.

I'm having a brain stem relapse and it's effecting my breathing.It's so exhusting trying to breath normally,to get a full breath.

I've had iv steriods last week so I know it's early days and hopefully they will calm it down.

But in the meantime.....well I'm stuck,feeling like carp and it's the breathing problems and the pain that goes with it that I think is the worst.

I've got some diazapam which is helping a bit,not that I can keep on taking them,so just wondered has anyone else had a braistem relapse? Any ideas or advice on how to deal with it? I'm trying breathing exersices which helps a bit,but not much.

I was a bit pole-axed when I saw the nurse on Weds and she said it was the brainstem under attack,had steriods that day and also been given the option of Tysabri so had a lot to think about and of course didn't as any questions.

I suppose I'm just looking for a bit of infomation and support if anyone has had one like this before.I did have one years ago but that was only vertigo,this one is the full monty,eyes,breathing,swallowing,pain loss of control etc so it's sort of new teritory for me,I can't believe how ill I feel,it's really taken me by suprise,I'd got used to all sorts of symptoms,but this is knocking me for six.

 

Any ideas or help or advice would be great. I hope this makes sense,it's a bit hard to think clearly.Thankyou to anyone who can help,it's really appreciated.xxjo

Hi Jo,

sorry you are having a rough time of it, i had a bad brainstem  one 2005 and was  out of it for a week, it was that bad, 

i was sick, vertigo,double vision ,bad bowel problems,and could only see things at a certain angle,mine took around 10 to 12 weeks to start to get better,

and i wish there was some advice i could give you make it better, but i think you know anyway theres not much that can be done,it will take its own course and all we can do is ride it out,

thats what makes it so hard to deal with,if only there was a tablet or something we could take to ease  it, i know when i am that bad i sart to think i will never get any better, BUT i always do,as you will too.

 

(((((((((((((((((((((((((hugs))))))))))))))))))))))

 

Jaki xx

 

 

 

 

 

No advice, sorry, but lots of ((((((((((hugs)))))))))) - sounds horrible letdown

I hope it gets better very soon.

Karen x

Hi jo
I experienced this I 2006 which led to my diagnosis, and again in 2007. On both occasions, like Jaki, it took about 12 weeks for me to recover. I had never experienced anything like it and at the time, was so worried that I wouldn’t fully recover. I’m currently well and although I had a small relapse last year, am well and functioning ok. It does get better but, I do feel for you as it is a tough period of time that feels like there’ll never be an end. Take care, loads o hugs xxx

You could consider LDN, my wife started that in the midst of the biggest down turn she had ever had and it stopped that dead in 4 days. Unfortunately we are all different so there is no guarantee it would do that for you but it is something else to consider.

Hi Jo,

         I have no real advice as such, but wish you to know that I have often been in this situation, but although the symptoms are shocking, thankfully we do recover. You are much in my thoughts as 'I  have been there, done that', but only the disease should know what I want to do with the t-shirt!

                    Lots of hugs,

                                   Moira 

Hello,thank you all so much for your replies.It helps to know I'm not alone and that people have been here before and recovered.

Trying to be positive,so thinking at least I'll get Tysabri,although I don't think I'll believe it untill I'm having the infusion.

Thanks for all your hugs too,makes a big difference,xxjo

 

ps,David I'm already on LDN.