Acute Disseminated Encephalomyelitis (ADEM) Support Group

Sleep?

Does anybody else struggle with sleep? Get tired easily
But can’t sleep well. Maybe it’s cos my brain went to sleep and has now become active again and catching up on the thinking…

I could not sleep for years. I started taking CALM. A magnesium supplement. It took about a week to notice a change, but it worked.

Sonie

Valerian helps me.

I did Post ADEM. My doctor put me on Endep for joint and other pain, it also helped me sleep

My 6 year old daughter who was diagnosed with ADEM at age 3 had a very hard time getting to sleep. It would take us 1 to 1 1/2 hours to get her to sleep. A teacher at her school recommended Melatonin. We first bought sleep aid at a local organic store which had 3 mg of melatonin in it. it was a liquid. We are now using a tablet which has 3 mg of melatolin in it.The melatonin works amazing. I would definitely give it a try. I like it because it works fast and it is natural.

Melatonin is a great supplement.

Just a reminder, please check with your doctor before trying any new supplements or sleep aids, Vicky.

Hello. I had sleep problems until one month ago: I fell asleep early (9:30 - 10:30 pm) but woke up at 02:00 - 03:00 and i did not fell sleeping again - and this since august 2013 (Adem recurrency).

I have tried melatonin since end of april, and it does something, but I still have problems. I was not aware that adem did even this.

BTW - does anyone has memory problems?

I’m like that. I can fall asleep but then I’m awake
That’s it.

Have a few memory problems yes but more to do with present memory than past

I have had a few memory issues. A nutritionist I have been working with, suggested Crossword puzzles. Also. I take Magnesium to help me sleep.

Sonie

Thank you, people, sorry for the extremely belated reply.

Hi guys

I was diagnosed with ADEM in Nov 2013 and had a very quick recovery via the use of high level dosage of Prednisolone and physiotherapy.

I am left with strange hot and cold feelings in my trunk, thigh area, ankles and feet.

These feelings seem to be more heightened when I go to bed making it difficult to sleep. Not helped by my bladder either which is very overactive and been diagnosed as a neurogenic bladder.

Any suggestions would be greatly appreciated?

Thank you
Tom

My husband has similar issues. He was first diagnosed in 2013. He also has a neurogenic bladder as well. He has neuropathy nerve pain, burning feet and legs. He also has moving patches of hyper sensitive skin. I’ve only just stumbled upon this support group by research I’ve been recently doing. This might be a little personal… you don’t have to answer if you feel uncomfortable. What brand caths do use? We buy coloplast 14fr 16”. They cost us $388.80/month. We are looking for cheaper, safe and free from cancer particles caths. I’ve found some places online. I’m just skeptical because they’re online. Any help you can pass along will be grateful! Oh my husband has also been diagnosed with RA. He cannot have the live meds they have for treatment because it could send him into an ADEM relapse. Now he’s at the stage where the dr said that’s all theirs left to try and it’s up to him because of a possible reaction and relapse. We really appreciate any in-site you have.

Thanks so much,

Stephanie