Heres the snap shot. This week i had 2 great days- the best Ive felt in 11 weeks. But as expected, this was followed by going back to normal badness today. I’m confused and need to rant and vent so i thought id do it here in case anyone has experienced similar and has any advise on how the feck to stay sane!! :oops:
Over the weekend I had a bit of an emotional breakdown. As the weekend went on, I started to feel a little better as I went ti stay at a friends. On Tues, I had my neuro appointment, so I got up about 3 hours earlier than I usually would to trek up to town. I expected to feel horrendous. I didn’t. When I saw him I told him that the first 5 days on amitriptyline were hell, but that since then it’s calmed down and has knocked out the crushing headache and some eye pressure. What it has not done is knock out any of the nose throbbing, other facial pain, dizziness, visual problems, tinnitus or ear squelching. He said he wants to keep me on the same dose of amitriptyline and see how I am when it’s built up a bit more. Come back in a month. I was surprised. I thought he’d up it but nevertheless, good news I spose. I also mentioned vrt. He said Its worth a go. Though I thought you needed testing before his so they know which ear is affected, although I guess if it’s central related ie the brain then maybe you don’t.
Anyway fact is, after that me and my boyfriend walked to Oxford st as he wanted to go in some shops. Shops are usually awful for me, but I tried it, and I found it ok. It was as tho being distracted by pretty clothes was a fickle enough reason for my maving brain to calm down it was such a defining moment for me to be in an environment where I’d previously not been able to hack, that I felt so elated!!!
I was on cloud 9.
Yesterday, I was in the flat for the first half of the day, and I lied in bed til 130pm :-/. I didn’t feel too good in the flat so at about 430 I drove to the shops to do some boring shopping… Bin bags, milk, etc etc! Anyway, although to start with, I didn’t feel right, I became much more relaxed and felt less dizzy and spaced out, as I became distracted by the bargains in pound land! I felt again, like the day before. It was fantastic. ( and who knew they’d sell both spice girls album on cd in there! I had those bad boys on cassette only 15yrs ago… Disclaimer: I’m not a spice fan, I just wanted to have the cd in my car to reminisce about my long lost youth)
Today, I woke with a mild headache. My grandparents came to take me out to lunch. The headache stayed, but I managed to sit in a pub for the meal and chat. I was sat next to a window and in hindsight, prob should of moved as the light affected me a bit, but anyway, it was great, but the headache didn’t shift. I felt sleepy. I came home and since I got here, the headache is still there and I have a greater pressure than usual behind my eyes. Suffice to say, I am absolutely distraught and gutted to have had a fantastic 1.5 days followed by a return to before. Iv even had a couple of spins today so I know it’s def got worse again,
It’s so hard to take. I know everyone says 1 step forward, 3 steps back is how it goes… But that just doesn’t make it any easier to deal with. I tried to talk to my mum but unfortunately she just told me to cheer up- she’s About as compassionate as a brick. It’s totally knocked the stuffing out of me.
Why have I got this headache?? And yet iv been headache free practically for a week now. (always a low level baseline head ache but not like this). Iv thought about triggers- maybe it was cos I drank a glass of sprite, not enough water, or maybe because I ate spaghetti?! I mean, I can’t see an obvious trigger…
I’m scared the ami is stopping working. That it was temporary and now needs a booster.I’m scared I won’t see a day like that again.
Do you guys think that being distracted and getting out and about directly helps your head??? Not just your mind, but literally your brain?
I know I should be pleased I had these good days and take on board that this takes time to recover from and that eventually the good days will outweigh the bad. I know, but now I’m left obsessed by trying to find a trigger and feeling like I did something bad to be punished with this.
Head hurts, not fun
This illness is so very cruel. :evil: