Just needed to vent... I was feeling like I was making progress and today I feel like I just took 10 steps backwards, so frustrating. I got off all medication a few weeks ago because I was thinking the medication was making me worse. I felt great for awhile, but today its like a bus drove over me. I dont want to complain to my family or friends, so its just hard to deal with these symptoms when I just want to feel like my old self again. Thanks for listening :(
How far out from your flu shot are you? I know we compared notes awhile back but I don't remember the details. How are you? What meds were you taking? Some of those you need to cut back slowly, I hope you did that or it could be why you don't feel so good now. I can certainly sympathize with you about wanting to be back to your old self again. I wish everyday for my husband to be back, but in his case I don't think that is going to happen. Keep working at it and get the most you can.
Thank you, they had me on migrane medicine, which I thought was working, but I really dont notice a difference with or without it, I did taper off. I was feeling great, lots of energy, then just two days of symptoms again, so its just depressing to go backwards. I think some is my fault because when I feel good , I do overdue it. I think I just need to learn balance My actual flu shot was last fall which sent me to the hospital with a swollen tongue , they didnt figure out it was ADEM until March. Had my second mri and no new leisons , but my old ones are still there, quite a few
Did the lesions look any different from the first MRI? I hope you can continue to pace yourself and learn what you are capable of without setbacks. I find just when we figure one thing out then we have to learn something else he can't do.
Flu shot ADEM said:
Thank you, they had me on migrane medicine, which I thought was working, but I really dont notice a difference with or without it, I did taper off. I was feeling great, lots of energy, then just two days of symptoms again, so its just depressing to go backwards. I think some is my fault because when I feel good , I do overdue it. I think I just need to learn balance My actual flu shot was last fall which sent me to the hospital with a swollen tongue , they didnt figure out it was ADEM until March. Had my second mri and no new leisons , but my old ones are still there, quite a few
I know exactly where you are coming from. The down days get you
Thinking to much but just rember bad days don’t just happen to us it happens to everyone not just us, just affects us more especially if we have had a good day. I have to think tomorrow’s a new day and don’t speak to the negative people
I had something similar happen, but I think I can explain it (at least for me): I started a new homeopathic remedy and had an amazing month! My head was clear, my energy up, and I felt better than since this happened! And then I crashed. And I'm in a down month+. For me, I think that while I was feeling good, I overdid it, and my brain/body said, "ENOUGH!" And now I'm tired all the time, sleeping 12-14 hours a night and needing a nap, etc.
My neurologist explained to me that old saying - every action has an opposite re-action...So when I use up all my energy, well, it has to come from somewhere. Give it time. You may have just overdone it.
Thinking positive for you,
LauraK
Thanks Laura, I agree its probably that. I was a very active person, so when I feel good and have my energy, then I am doing everything! And the same thing with sleeping! I am going to have to learn balance.... take care and rest!
Moderation. That's what the doctor says. And something I still haven't learned. Good luck to us all!
I feel exactly the same. Its been 5 years now and all is well I feel great and the Bam ! I slide back down again. So frustrating
Hi! I'm sorry for what you're going through. I am trying to find out if or how people were successful in helping a child overcome some lasting deficits from ADEM. My 12 y.o. son got sick with ADEM in June 2012 but it was sudden and acute and he was comatose for about 4 weeks and had to relearn everything. I noticed that you mentioned a swollen tongue and I was wondering if you or your docs knew what the heck caused it. My son had a hugely swollen tongue - sticking out of his mouth - while he was comatose. It was so disturbing and the docs never knew what caused it. What did your docs say? Thank you!
I received a flu shot last fall....when I got out to the parking lot my ear and throat was killing me, then I got home and my tongue swelled, that's when I knew I was having an allergic reaction. I kept going back to the doctors and saying, somethings not right, I had headaches, tongue would swell, but not so bad I couldn't breathe or anything. So, after about 5 trips to the doctor, they ordered the mri and found the lesions. I take high doses of vitamins now to recover. One product is reliv, Paul Collins 603-■■■■■■■■. Comes in a can and has helped with many auto-immune issues. Your body is using so much every day to heal, you have to provide it with extra and this is easy to mix into a shake! Good luck to your son, I hope he feels better!
About the swollen tongue: I can only speak for myself. My tongue tends to swell up badly when I've had too many meds or fatty foods. Upon research, it appears for me that when I've overtaxed my liver, my tongue swells up something awful. For me, I start the day with a glass of water with some lemon squeezed in for a sort of cleanse. A few days of that, and I feel better. I would talk to your doctor first.
Good luck!
LauraK
Johnsmom said:
Hi! I'm sorry for what you're going through. I am trying to find out if or how people were successful in helping a child overcome some lasting deficits from ADEM. My 12 y.o. son got sick with ADEM in June 2012 but it was sudden and acute and he was comatose for about 4 weeks and had to relearn everything. I noticed that you mentioned a swollen tongue and I was wondering if you or your docs knew what the heck caused it. My son had a hugely swollen tongue - sticking out of his mouth - while he was comatose. It was so disturbing and the docs never knew what caused it. What did your docs say? Thank you!