Forum

From sporadic to permanent attacks - please advice how you cope

Since Nov 2011 I have been having sporadic episodes of symptoms flaring up. The attacks start of with fatigue followed by not knowing where I am to complete loss of communicating and understanding what to say and do.

The attacks have started to occur regularly now for over eight days and not knowing the duration or severity of the attack is scary.

From start to end of the attacks other permanent symptoms I have are also affected.

Fatigue > brain fog > increased pins and needles > loss of cognitive ability > temp paralysis in both arms > squeeze below chest > brain fog > symptoms start improving and back to normal.

Duration used to about an hour in length and attacks were happening every other day.

For the last 8 days in a row I’ve had the same attacks with various sensory symptoms. The increase in duration is starting to worry me. I do recover but I’m scared because I don’t know if I will recover or not, or will the attacks affect me badly that I may be out for six.

How do you cope with these type of attacks? Can anything be done to slow down these attacks? Speed up recovery?

The attacks now last for about 4-5 hours, they only used to last 15 mins before.

Any advice or what to do to help with the attacks would be much appreciated.

Hi,

I don't have these types of episodes now as when I get relapses they are completely debilitating and I lose everything.  I'm SP now but years ago I used to the type of episodes you are talking about.  I go for oxygen treatment (HBOT) weekly at my MS centre and it is the one of the only things that I have tried that has helped me.  So  it might be worth a try for you.  It is not clinically proven for MS but it has certainly help me.  I also take Vit D and inject B12. For cognitive problems you could try Ginko Biloba (I don't take this but some people say it helps). Then there is also LDN from eMed (I tried this but found no benefit but it does work for some people, so I'm not giving up on the hope it might help me in the future - so it might be worth your while giving it a go as some people have had really good results from it).  You could also ask your GP fr Modafinil for fatigue (I have been n this for a short time when I was really suffering badly with fatigue and it did help - but I don't take it now as my fatigue is not as bad, but I remain tried at all times).

I hope you come out of this awful stage soon and that this information is of some use.

Best wishes, Mary

Hi anon, this could have been me writing your post, this is exactly whats happening to me at the moment,i put a post on yesterday   16 weeks and counting !!! by jaki,

 i have been having a relapse now for 16 weeks, and i am having these attacks you mention,they are so scary arent they ?

 

mine started a few years ago and i only got the odd one now and then, it started with me not being able to work out how to brush my teeth,then i was making a pie and got so confused i couldnt do it, i wish i had some advice for you, but all i can do is say i do know how it feels,and hopefully it will pass in time for both of us,mine last for about  5 or 6 hours now,and leave me exhausted,when they happen all i can do is lie down quiet and try my best to relax,but it feels as though every nerve ending is screaming out,and i really feel like i am loosing my mind,needless to say i feel so depressed with it all too.

Its also like you loose all power in every part of your body,both physically and mentally

 

send me a pm if you like,it does help when you know your not the only one,i was thinking i was the only one who got this terrifying thing going on.

 

jaki  xx