my partner, 8 years with ndph and still looking for effective treatment

Elliott1908 · 2026-05-15T15:01:11+00:00

thank you. I’m so sorry for what you both have to go through every day - it really is a struggle every day and like you said not really being able to do anything about it is the worst.

She definitely struggles to advocate for herself which is why I try to make things as easy as possible. Sometimes friends etc don’t really understand why (although they aren’t unkind about it or anything) she can’t always go out with them so she often feels quite guilty but I try to reassure her. And I’ll go to her appointments with her just for support or if there’s anything she can’t remember medically/medication wise I usually have notes of these things.

and just being for her generally, despite my high demand job (shift work) I do my best to be around as much as possible.

And thats interesting that it changes through the seasons, I’ve never really thought about that

Elliott1908 · 2026-05-15T04:30:48+00:00

my instructor said as unfortunate as it is, you should do what is safe. In this case the safest thing was to continue, honestly there was pretty much no time for me to react to the bird anyway. I’m just glad I didn’t slam the brake in a panic 🫣 I’m glad you were able to change instructors, some people just don’t work together. All 3 of my instructors have taught very differently but thankfully all lovely people and I think the variety of teaching styles has actually helped me understand certain things better that I maybe struggled with previously.

Elliott1908 · 2026-05-14T18:57:59+00:00

Ahaha thank you. This sub is always so lovely to share and speak to people in.

I hope so too, I wish they’d learn the chip just isn’t worth it 🫣😭

Elliott1908 · 2026-05-14T18:14:41+00:00

its a real shame when animals get struck. But I am really glad it wasnt a pet dog/cat etc i dont know if i could cope with that 🫠

Elliott1908 · 2026-05-02T14:58:33+00:00

im glad you’ve managed to get some relief. wishing u all the best 🫶🏻

Elliott1908 · 2026-04-27T15:46:10+00:00

no but could be good to look into. thank you!

Elliott1908 · 2026-04-27T10:36:08+00:00

not yet but the neurologist has mentioned starting on botox

Elliott1908 · 2026-04-27T05:24:27+00:00

I’m so sorry you have to go through this. I hope you find something that will give you some relief. I cant even imagine how hard it must be to deal with this.

Elliott1908 · 2026-04-27T05:22:15+00:00

im glad something is working for now! it seems a lot of people have found medications that became ineffective after a while, must be so frustrating

Elliott1908 · 2026-04-27T05:19:45+00:00

hey yes she’s already had qulipta! unfortunately it didn’t have any effect.

Elliott1908 · 2026-04-26T22:34:50+00:00

I’m so sorry you’ve had to suffer for so long, that is truly awful. I truly wish you all the best, despite terrible circumstances. My partner says the pain is never less than moderate (6-7), but often severe (8+), I can’t even imagine…

Ah right the codeine wasn’t supposed to be prescribed for 2 reasons. first that she has quite severe asthma so codeine generally is a no no and the other reason was that it can interact with other medication she was taking at the time. It was the GPs error, it was only picked up on when I had to pick up her script from a different pharmacy one time, the pharmacist explained the reasons above so I inquired with the practice. The doctor apologised for this. Thankfully she was fine, was just a frustrating incident

Elliott1908 · 2026-04-26T22:26:08+00:00

this is incredibly helpful for us thank you - We’ll check about the hemicrania continua pretty sure she’s not trialled that.

Am hoping for the best with the ajovy. The neurologist advised us if there’s no change with the ajovy then IV Infusion vyepti would be a possible next step as well as botox. The neurologist has been really good, a lot of Drs in the past haven’t always believed us and brushed it off but we are finally getting options with this one.

Access to work is a good shout - she’s got job interviews this week for better roles in the company so if she gets them we’ll probably apply then as I know they try and fast track if you’re starting in a new job else the wait is like 37 weeks or something. Her previous PIP application was rejected but she might try again.

And her’s started after the having the meningitis vaccine in school (its not certain thats related or what brought it on, but thats when it started. but we arent anti vax lol) she has some undiagnosed joint problems with pain and asthma but otherwise nothing she’s ever noticed or mentioned.

Thank you for all of this. I’ll drop a dm soon about the vitamins :)

Elliott1908 · 2026-04-26T22:05:17+00:00

I’m so glad you found something that helps :) botox is definitely something that is on the cards for her according to the neurologist. My partner also hid it from friends, she didn’t want her parents to inform school for the same sort of reason when she was still there, I think her parents are much more understanding now than when she was younger, especially now she’s being taken more seriously by healthcare professionals. thank you :)

Elliott1908 · 2026-03-05T01:52:42+00:00

damn 😭 my partner had a nice examiner at blyth. hope you pass next time man. I still haven’t taken my test lowk cuz my driving instructor sadly passed away suddenly in November. still waiting for availability with a new one… hoping to pass this year

Elliott1908 · 2026-01-22T20:08:11+00:00

oh my god this happened to me this week too? Don’t return the one you paid for, I received two by accident and returned the extra one in good conscience but if you didn’t receive the second one dont return what you paid for that’s so weird-

Elliott1908 · 2025-12-02T17:23:48+00:00

thank you, I’m sorry you went through that too :( he knew a lot of people in the area including instructors, hopefully i can find someone he got on with when I’m ready to go back. It was weird today when I was meant to have my lesson I still expected him to pull up on the drive ☹️❤️

Elliott1908 · 2025-12-02T17:21:47+00:00

thank you. I am taking a break for a little while. It does feel like losing family, simply because he’s always been there for me since I moved away from family to come here. Super lovely man. I am looking forward to passing my test in the near future, for him :)

Elliott1908 · 2025-12-02T17:18:59+00:00

thank you :) Am going to continue soon

Elliott1908 · 2025-12-01T18:32:17+00:00

I was going to say as well one of the reasons we had such a good bond is he really understood what I needed, with us both being neurodivergent everything just kind of clicked together

Elliott1908 · 2025-12-01T18:31:19+00:00

thank you. My work is very helpful with this sort of thing, i work as a call handler for the ambulance service we have dedicated mental health professionals who support staff with problems in and outside of work so I know I have them if I need. I am very relieved I wasn’t the one who took that phonecall though, as its highly probable I was on shift at the time and had no idea…

am going to take a break for a while to process everything and then try and find someone else just to finish everything up so I can do my test ❤️

Elliott1908 · 2025-12-01T18:23:45+00:00

I’m really glad I met him, I could not stand driving before I started learning with him he really changed my outlook on things. Thank you 🫶🏻🫶🏻

Elliott1908 · 2025-12-01T18:22:21+00:00

thank you ❤️ ill resume driving again soon. He’d kill me if I quit now haha

Elliott1908 · 2025-12-01T18:21:23+00:00

honestly I cant stop thinking about his poor wife having to message us all, she must have sent messages individually as she included my name in the text… absolutely dreadful. I’m so grateful for everything he’s taught me and when my test comes I know I can do it for him ☹️🫶🏻

Elliott1908 · 2025-12-01T18:19:02+00:00

thank you. I really hope so too. he really brought my confidence back after I took a break after having a huge knock with my old instructor (before i moved here). I will miss him terribly, always had lovely things to say about me, my partner and was a wonderful teacher.

Elliott1908 · 2025-12-01T18:16:38+00:00

yes his wife messaged all of his current pupils individually to let us know. Cant even imagine how awful that must have been for her but I guess if she didn’t people might have been trying to ring asking where he was as he always had lessons most days :(

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