been happenign for 18 months or so now. i havent tried meds-sometimes the side effects are worse thasn original issue. i just sit it (or lie!) out. i dont sleep after this happens but resting body does help. sometimes.
Hello sheep, its so frustrating and psychologically draining when these episodes happen, it happens to me regularly, like you I get up feeling ready to take on the world and by time im ready to go out the fatigue is so bad I end up getting changed and lying on sofa. I have on more than one occasion had to leave a trolley half full of shopping in the supermarket as I knew that if I didnt get home asap I would not be able to drive my car safely. my fatigue is often accompanied by awful disorientation and slurred speech so being indoors is my safe haven as people have been known to assume ive been tippling When all this ms stuff was still a relatively new unwanted visitor to my life I could sleep for hours as a result of a bout of fatigue, deep, deep sleep, now I tend to just lie on sofa with my eyes closed listening to tele or music. I have taken modafanil for several years now but I rarely have a day when im not fatigued at sometime but I certainly would say that I rarely have the bouts of utter all encapsulating bouts of fatigue I had in the first few years. It has no sense of compassion sadly and can spoil many times with family and friends or even precious us time. Im sorry your day has turned out as it has but I do hope resting has improved how you feel. Joy x
Many thanks i feel for you both as this is horrible and seems to be getting worse each time it happens , even today 24hrs on i am struggling , think im going to email my ms nurse as my eyes are starting to hurt to and can only see out of the right but this 1 is aching too , lastnight i was left feeling nauseated and weak but so so tired yet unable to sleep today i just feel achy and weak but defo aching in my right eye all the best
Day 3 and still not recovered fully Joy & Orange do you find you are left like this 3 days after also do you find yourself having eye pain and a headache im not sure if its related to the episode or if my ON has flared up again but in the other eye , i hope not as 13months on im still all but totally blind in my left eye and dont think thats gonna change now so kinda worried a tad about my right eye now , im hopping its just tiredness/straining from leaving my eye patch off and the white(left eye) keeps fighting for domination to the right eye that sees okay
Hi sheep, what a time this is for you, 3 days with no respite is in itself emotionally exhausting without the discomfort your experiencing and i’m sorry to hear there has been no improvement. ON is new to me and my illness I didnt experience problems with my eyes until recently and it is one of the scariest things, it came on unexpectedly and I can honestly say at the end of the first day of enduring it I cried for myself and it is many, many years since I have felt so miserable with this illness it reduced me to tears of self pity. The partial loss of vision and stabbing pain behind my eyes filled me with such anxiety im sure I made the headache worse, however lovely that was me and I am in know way suggesting that what you are going through at the moment is the same. There is every possibility you are right in thinking it could be your eye adjusting after taking your patch off. I am sure there will be people with far more experience in the symptoms your experiencing who will be along soon to offer some advice. my eyes improved in a couple of days and I still do have episodes of blurred vision and headache but not anything like you are, and I do hope it begins to improve soon. my bouts of bad fatigue can last days or hours I just ride the wave with those. One thing I find very soothing when I have bad eye days is to put a few drops of lavender essential oil into a bowl of warm water, soak a facecloth in it, wring it out and place it over my eyes, I find the warmth and smell very soothing, I just keep rinsing the cloth to re-warm it until im done. Big hugs joy x
many thanks for your reply yep i feel for you as i know when i awoke blind nothing but black in the left eye it was scary its now 13 months since onset and i have been left with just a white haze , the good news though is although i have been told thats probably about all im gonna recover in the left eye today i feel somewhat normal back to the normal status quo concert tremor in my head and neck and shaking hands and arms but it seems it may have passed as my right eye has stopped hurting and the headache is very very dull , this could be due to the zapain & diazepam but defo alot better than the previous 3 days many many thanks for your replies very appreciated.
I guess even though its been 14yrs im still trying to find a pattern or triggers that i can avoid , im gonna try that with the lavender and flannel as that sounds very relaxing , i hope the days you get are few and far between