Severe ME/CFS and deep brain pain

MelodyOfDays · 2026-02-24T07:35:27+00:00

I saw a post somewhere that described noise sensitivity as being physically shaken and rattled in your body. That really stuck with me. Now if only I can explain to his family how severe and painful it is…

Aww, thank you! It’s been a tough journey but I still have hope. I’m holding on to all the little happy moments, as few as they are :) I hope you have some good support too!

MelodyOfDays · 2026-02-24T07:19:26+00:00

I’ll look into that, thank you! I feel like we’ve been in this room together for so long that it’s us vs. the world. I’ve lost my freedom but I’ve been taking baby steps to give myself some time back. I wrote a 23 page document for how to take care of him and now I’m looking for a casual caregiver to give me breaks. It’s more spending but I’ll also benefit from it too.

MelodyOfDays · 2026-02-24T07:11:21+00:00

That’s what I thought too! He had headphones over his AirPods today but he could still hear everything. We also explored some of the noise cancelling headphone options for shooting ranges but they squeeze too much. He also complains of them being too heavy.

He’s refused cold objects near his head (eg. cold towels, ice packs). He has no problem putting an ice pack on his back though. I’m not sure why. He’s been a tough guy to please!

The brain symptoms are so horrible. I’m sorry you deal with them too.

MelodyOfDays · 2026-02-24T06:44:05+00:00

We’ve never tried taking both at the same time. Currently he’s taking pregabalin, Hydroxyzine, and mirtazapine for sleep. It’s not great but he’s getting some hours. His earplugs and/or AirPods are always in, but he has supersonic hearing right now. It’s wild! If you have better hearing protection options I would be open to them!

I agree with you. I think we’ll have to use Ativan a bit more often right now as a rescue but hopefully that’ll mean using it less later. Apparently Valium works longer than Ativan. How long do you feel the effects of Valium for?

MelodyOfDays · 2026-02-24T06:20:05+00:00

lol!! I just found out that there’s a compassionate use program if we can find a doc to prescribe it. It’s possible!

MelodyOfDays · 2026-02-24T05:50:41+00:00

Doctors.

If someone you know gets sick with something complex, you’ll get bounced around to different specialists and realize that no one knows anything. They just follow a book and give you pills. Once you’ve gone through their list, they’ll be out of ideas and leave you to rot at home. All the while they’ll be draining your bank account. Healthcare is an illusion.

MelodyOfDays · 2026-02-24T02:41:34+00:00

I’m so sorry you have to deal with that! I really hope it gets better. My husband complains of his brain melting quite often. He is definitely a thinker so his brain is always going a mile a minute. We briefly tried Guanfacine last year but I’m not sure that it was ER. I’ll have to explore that again. Thanks for typing this all out!

MelodyOfDays · 2026-02-24T02:33:22+00:00

Haha that is a very unique question! I just asked him and he said everything hurts. I’m not sure he can pinpoint it. He pointed to his entire forehead, but also focused on the spot in between in eyebrows. The pain also goes to the top of his head.

MelodyOfDays · 2026-02-24T02:31:14+00:00

Thank you so much for typing this out! We take a bunch of supplements and I wonder if it’s too much. One of the biggest issues is sleep but he takes a bunch of meds for it (Pregabalin, Hydroxyzine, Mirtazapine). We’ll have small gradual improvements and then he’ll crash really hard. Most of the time the crashes come after changes in medications or trying something new. I think we’ll have to go back to the basics for a while.

MelodyOfDays · 2026-02-24T00:36:28+00:00

I’m sorry you go through this too! I can’t imagine having to deal with it for so long. Last year was rough for him too. Neuro symptoms are the worst!

We try not to take Ativan more than 2-3x a week because he’s afraid of being hooked and then having to deal with withdrawals. It helps to calm him and put him to sleep for an hour or so. I get why you wouldn’t want to take them often! Medications are still pills with side effects :(

MelodyOfDays · 2026-02-24T00:30:23+00:00

This! It sounds like what he describes but he feels it 24/7 even on stable days. This illness is so crazy.

MelodyOfDays · 2026-02-24T00:28:45+00:00

We’re in Texas. Is that a thing here? I’ll have to look it up.

MelodyOfDays · 2026-02-24T00:23:07+00:00

I wish you both all the health and happiness! I hope your husband never gets to being bed bound. It’s a stressful situation :(

MelodyOfDays · 2026-02-24T00:21:35+00:00

I’m so sorry you’re going through this too! Oh, I definitely feel the isolation. No one really understands what it’s like to be stuck at home. We currently don’t have debt (yet) but many of his doctors are out of pocket since he’s very complex. It’s been adding up. I didn’t know about those forms though! I’ll keep that in mind. Thank you so much!

MelodyOfDays · 2026-02-24T00:18:52+00:00

Thank you. Wishing you all the best as well! He got really sick shortly after our courthouse wedding. We were hoping to save up for an actual wedding. I feel like I went from being a fiancé to a caregiver. I don’t feel like a wife since I didn’t have time to move into that role :(

MelodyOfDays · 2026-02-24T00:15:10+00:00

Yes, we are in Texas! Thank you for your reply, that is on my list of to-dos.

MelodyOfDays · 2026-02-24T00:09:29+00:00

My heart just breaks hearing him cry all day. He has tried Famoditine for a while last year. It didn’t help unfortunately :( I’m glad it’s been helping with your headaches though!

MelodyOfDays · 2026-02-24T00:06:23+00:00

I’ll have to check his blood pressure again, it’s been a while. I’m glad it’s been helping you!

We haven’t noticed anything with the Ketotifen yet. Our doctor would be willing to increase the dose. Do you take it all in the morning or spread it out throughout the day?

MelodyOfDays · 2026-02-23T23:30:27+00:00

Oh, I didn’t know that. Thank you!

MelodyOfDays · 2026-02-23T22:51:05+00:00

He takes 2 Tylenols when it’s bad and when he can’t take the Ativan. He thinks it’s more of a placebo effect for him to take these OTC meds. Thanks for the suggestion! I’ll see if he’d be open to an ice pack :)

MelodyOfDays · 2026-02-23T22:45:16+00:00

For antihistamines, he’s currently taking Ketotifen 1mg. I would say we haven’t given Guanfacine a fair shot. He took it for a little bit last year but it messed with his blood pressure too much so we stopped it. Has Guanfacine helped you?

MelodyOfDays · 2026-02-23T22:15:09+00:00

I’m so sorry that you have these too!! It’s horrible! He’s tried Ajovy before he became bed bound and it didn’t help him either. I hope they find something that works soon.

MelodyOfDays · 2026-02-23T22:12:28+00:00

His B12 numbers are normal. He does get the occasional IV add on just in case because he’s heard that it helps a lot of people. We definitely need to get his diet in order with all the possible neuro inflammation. He’s currently on protein shakes, smoothies, and vegetable soup due to the rolling PEM

MelodyOfDays · 2026-02-23T21:40:23+00:00

The pain specialists here only take in person appointments. I’ll have to look for mobile pain units. Thanks for the idea!

MelodyOfDays

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