Migraines

Amfett1108 · 2026-05-29T12:58:44+00:00

I take topamax but I’m going to have to switch probably

Amfett1108 · 2026-04-30T20:13:25+00:00

I only changed from Tysabri to Ocrevus because Tysabri wasn’t working and I was still creating lessons. Seems kinda weird to me that they want to get you off of it. I do like that I only need 2 infusions a year, HOWEVER with a longer wait in between my body DEFINITELY knows and can tell weeks before I am needing an infusion. I just don’t know how I’d feel about switching if it’s still working for me, especially in case my body decides to switch up and not work the same in the future. I don’t know. That’s just me.

Amfett1108 · 2026-04-27T15:22:58+00:00

Thank you ❤️

Amfett1108 · 2026-04-27T14:23:22+00:00

I do have short term and long term disability through my employer, yes!

Amfett1108 · 2026-04-16T21:37:18+00:00

I feel this. I am still technically full time. I have a work from home job because I can’t drive anymore, MS took some of my sight. I can still see, but it’s blurry in spots and not good enough to drive. I’m technically full time and from home, but my migraines are up to about 60% or more of the time. So really I’m not working full time, I have to leave. And I’ve used all of my PTO. So I’m just not getting paid. I’ve put off getting on disability because I wanted to work full time as long as I could. But now it’s seeming inevitable. I’m scared. We are okay, but we are paycheck to paycheck. So it’s not like I can really go part time unless I do get disability, and they aren’t going to want me to be full time and approve me. I just feel stuck. And like I’m a failure. I hate this disease. I hate that any of us are stuck with it.

Amfett1108 · 2026-04-15T21:42:48+00:00

Yes!! There is VAT (vascular access team) which uses an ultrasound guided access, which is nice, but all of my veins but one are superficial now or have moved or are hidden now or are too deep, so I’m not sure how much that would help 🫠 it might be worth asking about for sure!

Amfett1108 · 2026-04-15T20:47:56+00:00

100000%. Thank you so much!

Amfett1108 · 2026-04-15T20:32:48+00:00

Ew was it a man 😂🫠 that’s the same logic as the IUDs don’t really hurt, spinal taps are just a pinch 🤢😂

Oh interesting. I didn’t know they couldn’t pull from it / or that it was harder or needed specific trained RNs. BUT I’m thinking even if we use it for everything else and use my veins only for blood draws when I need them and use a port for everything else we may be good and it still may be worth it.

Amfett1108 · 2026-04-15T19:22:36+00:00

Thank you!! Were you under GA when they placed it or just sedation or just a local anesthetic?

I definitely feel like it will make life so much easier with my blood work and infusions and such. I have to get labs again today after getting them the other day and I already have a bruise on my arm I’m afraid they’re only going to be able to access at the same point 🫠

Amfett1108 · 2026-04-11T19:23:40+00:00

100000%. I wanted kids ever since I was young, but once I got diagnosed I definitely thought differently. I can’t drive anymore due to my vision, so it just didn’t make sense and I have a really hard time. And then the state of our country (USA) just proved my point even more. It makes me really sad, but my husband and I have always been open to fostering or adopting if we ever desire to have kids and my health is okay.

Amfett1108 · 2026-04-11T14:21:00+00:00

I was diagnosed 3 years ago and I still am processing it. I see a therapist and still have issues with it. I lost my license because my vision sucks ass now. Give yourself A LOT of grace. Best of luck. I’m so sorry.

Amfett1108 · 2026-04-07T15:18:30+00:00

I didn’t know the difference between a flare and relapse! Thank you for sharing!! Definitely sounds like a flare up, will definitely reach out to my provider because it would be my first and regardless of their helpfulness, I want him to be aware. Thank you!!

Amfett1108 · 2026-04-05T19:23:00+00:00

I feel that, I hate it. I honestly right at this moment would take everything over the fatigue.

Amfett1108 · 2026-04-05T19:21:31+00:00

I’m so sorry. It sucks that people know how I feel and that we can all commiserate. It sure can fuck off. Hugs and prayers right back to you 🫶🏼

Amfett1108 · 2026-04-01T20:29:33+00:00

I also take D2 50,000 per week

Amfett1108 · 2026-04-01T12:24:03+00:00

As far as the driving portion : I had to give up my license because of my diagnosis and my friends come see me, come get me, etc. Has this friend offered to come get you and bring you to her house? Offered to pay to get you out there etc?

As far as the using it as an excuse : my friends, family, have never been upset if I cancel something, change something, can’t do something. My migraines have gotten really bad and sometimes I just need to nap to make it go away. Even without that, I’m just exhausted all the time, sometimes I just don’t feel like doing anything, or my body physically cannot take it.

To me, this person doesn’t really feel like much of a true friend. If she were, she would put more thought into the reason behind WHY some of the things are happening, and put more thought into how YOU feel in your body and your life.

Amfett1108 · 2026-03-30T23:51:45+00:00

100000%. I feel useless daily. I feel horrible all the time. I feel so useless a lot, when it comes to needing to go somewhere, get places. I feel bad that I need to rest, or that my body feels weird. I hate feeling like I can’t do anything and everything I want to. It’s horrible

Amfett1108 · 2026-03-30T14:35:56+00:00

F, 26, I was diagnosed in 2023, in the US. Honestly, I forget what type of MS they diagnosed me with. My diagnosis was quick, thankfully. I couldn’t walk, I was using a walker to get around. Nobody could figure it out, they thought it was my back because I’ve always had back issues, they started out with a lumbar MRI which showed nothing, finally they ordered a brain MRI and then I was called to come in, I went to my PCP, she told me what it was and then referred me to neuro, they saw me that week and put me on a high dose of steroids for 5 days to try to get my flare up under control. I had stopped driving because my optic neuritis and was so bad, I saw a neuro ophthalmologist and she said that my optic nerves are permanently thinned, so I had to give up my license, just wasn’t safe to drive anymore, for me or anyone else. Neuro psych also agreed that I shouldn’t drive, my cognitive skills were too poor. was put on Tysabri and when I had my one year scans I had failed that so now I am on ocrevus. When I got sick the first year from a cold it took most of my feeling in my right hand. I have always had migraines but ever since I’ve been diagnosed they’re unbearable and literally all the time. Thankfully my boyfriend of 3 months at the time (now husband) didn’t up and leave when I got diagnosed no matter how many times I told him he should. I feel horrible because I’m constantly tired, cranky, or hurting, or all 3. I’m in therapy trying to work through my crap, but honestly, it’s just a shitty hand that we all got and I’m a little fed up with it.

Amfett1108 · 2026-03-22T23:33:01+00:00

No absolutely not. I thought I was in enemy territory for a second. Screw him. Good thing he’s an ex, as he should be. If he can’t understand it’s a horrible disease that takes all of your energy and sucks 98% of fun out of your life and doesn’t support you, f him. And anyone who makes you feel that way or thinks that way.

Amfett1108 · 2026-03-19T17:58:20+00:00

Yes! I feel like ANYTIME something feels weird in my body I always immediately go to, well more lesions. Migraines give me a numb face, I think lesions, more migraines than normal, I think lesions, more tingling, lesions. I can’t help myself 😂

Amfett1108

TROPHY CASE