Hello everyone! I hope you are all well.

I get this headaches that are throughout most of my head, back of neck and travel down to the bridge of my nose and eye.
I take Tylenol but it won’t touch it. I’m going to try ibuprofen next. I wasn’t sure if anyone else experienced this as well. I have been keeping track of the headaches and it seems to be when I’m having a “bad day”.

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Oh my @Cindal , that does not sound like fun. How frequent are these ? I looked up some older threads, and found one where members were experiencing blurred vision and fatigue whenever they are overstimulated with stress, which sounded similar to your trigger of having a “bad day”. Here is the link to that: Headache and fatigue

Hope you are able to get this figured out @Cindal. You can also check out all of the posts we have had to date listing the keyword “headache” via this link:https://forum.acutedisseminatedencephalomyelitis.org/search?q=headache

But hopefully we can hear a response from someone soon!

Take care @Cindal
-Arjuna from ModSupport

Thank you for the information, I’ll be sure to look into that!
The headaches are just about every day.

Hey Cindal. I too experience headaches quite frequently. I also noticed that they tend to happen when I have a “bad” day. However, my headaches seem to be focused on the front. I am curious, have you talked with your doctor about this issue? If so what did they tell you? I was told not to take Tylenol or Ibuprofen as they both could damage your liver and kidney. I would suggest trying other tropical methods such as pain (headache) patches. Or simply lie down and take a breather. I hope this helps and please feel free to contact me further.

Have you checked if you are having migraines? Using Eucalyptus oil helps for the pain. Better than the pain killers…
Epsom salt baths and lavender oil helps relax as well.

hiya im new to here. I am getting the same headaches which goes across my forehead and eyes. which goes back towards my ears and neck. I have been diagnosed 6 months ago after getting tested for everything going. my only symptom that I had was a headache with no neurological symptoms. I get very anxious every time I get a headache which doesn’t help. I I have been to back to my GP and he has said its a tension headache. but just scared it can come back or even worse they have mis diagnosed me!!!

My doctor has ordered a mri on my brain, so we will see what that shows. She said ibuprofen and rest. She also wants me to contact the eye dr immediately.

Have you been getting these headaches just since ADEM? I’m not a doctor, but I’d think about getting checked for a sinus issue. Hope you start feeling better.

Cindal, please continue to keep us updated.

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Hiya I have been back to a&e as was told if it got worse. Had another ct and check by a neuro. Have been told the adem has gone down since my last pet/ct. And was told it’s a tension headches and possible sinus problem.

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Hey all!
Unfortunately I’m still having those darn nagging headaches BUT recently as in the last day, my eyes have started to hurt when I look down and side to side…this scares me soooo much.
Obviously, if it gets worse throughout the night my butt will be in the ER. Has anyone else experienced any eye pain during their recovery?

How are you doing today? If the eye pain is continuing, I would encourage you to be seen by your eye doctor as soon as possible. Eyes are not something to wait around on.


hiya i had the same problems with my eyes and waking up with horrific eye pain that’s why i went to a&e. but scans showed nothing went to opticians and got scans on my eyes nothing wrong with them. but for some reason i have bad ears. just get nervous everytime i get a headache thats daily. so he as told me iv got anxiety as the way the neurologists handled my case telling i had an aggressive brain tumour to start with.

Did you have a brain tumor or was it Bad Bedside Manner? I had a friend who had ADEM, but was diagnosed with a tumor originally.


bad bed side manor. when the i was in a&e i had the mri scan and they straight away they said you have a aggressive brain tumor. got sent to a neuro hospital they then said we dont know what you have. had my first LP and my white blood cell count was high so said it was a infection and i was steroids, then transferred to another hospital had another mri on my back and head after 2 weeks of steroids to see what was happening. and the swelling and lesions went down so quick cant be a tumour. so had another LP to get more tests, went home for 2 months and hadn’t heard any result or diagnosis, had to pay to go private in the end and was diagnosed with ADEM after they couldn’t find any cancer cells in the LP on inflammation cells. which all started from sinusitis

I am sorry…unfortunately, too few doctors understand ADEM. This is why Bens Friends exists. We try to share info and experiences with patients currently trying to cope. Keep putting one foot in front of another and keeping pushing forward.

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thank you for your support. Fingers crossed my headaches disappear. already been advised its going to take along time to be 100%.

Keep in mind, healing is slow with ADEM. Just so you are aware…hopefully you will be 100% better, however most of us are left with some type of disability OR residuals. For example, I have permanent neuropathies in my hands. I had to learn to use my hands all over again and now I have pins and needles (like when your foot goes to sleep) from my wrists to my finger tips 100% of the day. Good Point…I can use them and I am fairly whole. I consider myself lucky compared to some. Keep moving forward and looking to the future. We are here for your moral support.

I definitely feel lucky, as I haven’t had any other symtoms apart from headaches and no neuro problems I just got told was caught with it very early what ever I had. just the way I was treated in A&E to started has scared me just hearing the word cancer sends shivers down me. just getting any info from the doctors is 0 to none no follow ups nothing. some times I get pins and needles if I sit funny

Hey Cindal,
Thank you for responding to my previous message. I had several Brain MRI’s performed in these past couple of months. I too, experienced eye (vision) problems, and was referred to an eye specialist. Upon seeing one, I was prescribed glasses and was instructed to wear them when I am doing studios work or watching a movie. I am hoping that your MRI results turn up negative and that your problems cease to exist or at least calm down. Please if you can update us with the results, so that you do not have to continue through this process alone. I wish you all the best, and I look forward to hearing from you soon.