How bout when...

You do the same things over each year... For example..... get fed up with your preventative bc you are still getting way too many M... And the the realzation of how much it was curbing the intensity of those beasts bites ya in the butt about 4 days after going off it. Lovely!!!!

I write this in between vomit breaks and ice pack refills. Ugghhhh! This life thumbs down to it!

Maybe my new Dr will find this underlying giant brain tumor that I'm sure the 3 other MRIs just missed and we can get it out and move on.... Lmao!!

At least I can laugh at myself still!

yeah jess. It's scary, they want to check me for a PFO, a defect in my heart. They also assume I may be having ministrokes. The PFO can be fixed by a minimally invasive heart surgery, but man..heart surgery..WTH?

Still, I wish they'd find it and just get on with it. I bet we are the only ones in the world that wish for heart defects and brain tumors. Crazy.

J, I know. I went through that, like back and forth many times. I'd feel like, "this stupid stuff doesn't do a darn thing anyway!" and stop taking it, then wonder why the heck I felt so bad.

You have my sympathy, for sure.

LG, I forget, when is that? Soon? I'll hope it doesn't turn anything bad up. And mini strokes. Wow.

That will be March 11th I believe. Bubble study. I'd rather them find ministrokes, tell me and then put me on preventatives for the big strokes. Ministrokes are scary but harbor no brain damage (so I've read). They are a warning for strokes in the future. The PFO is what I'm worried about, that means big decisions which I'm no good at. Hoping for help with that from you fine people

Hope you are feeling better as I'm writing this Jess!

J - I hope the monster has been tamed for a bit. No fun when things get that bad. It always seems to be a reminder why we do something when we stop...hope the new doc can help the frequency to slow.

LG - In some ways I wish they'd find I have a huge crater in my head just to solve it. But then I'd have a crater in my head...that's sometimes even more scary. I hope that you get answers but not the scary ones.

HUbby just doesn't understand it when I burst into tears when another test comes back NORMAL! I'm glad you guys get it.

Some days I wouldn't even mind if the tests came back with something terminal that would put me out of my misery. Don't have those days often, but they are there.

Charlotte

THank you for reminding me of that cycle. I think I am just about ready to do it myself. I'm so frustrated with my meds. I'm not getting as many migraines but the facial pain is still bad and I think the tinnitus I have is a medical reaction.

So I am going in to talk to my dr about changing my meds. My fear is that taking out what might be causing the tinnitus will make the migraines and facial pain worsen. What to do? I'm so sick of this!!!

To be on meds or off meds...that is the question. I am currently off meds and only using abortives. Granted I'm still a guinea pig but wow has it made a difference. After the last interaction, I decided to screw orders - I'm so tired of being so ill.

I'm currently preventative free for about 3 days. I had no idea how much worse the meds had made things. I am still in M mode but the symptoms aren't nearly as bad (I probably just jinxed myself as I'm not doing real hot today). They are still there, but they are much easier to deal with. I don't have so much weird visual stuff and the symptoms are back to normal - ie sound and light sensitive but not extreme. It feels so good...yes I know, strange. I can handle this - the extreme symptoms, nothing was really touching.

I am going to go back to preventative trials but not until March 1. I decided I needed this break. I need another reference point to look at how things were going. Since starting preventatives...my life has been crap. I will say this, if preventatives continue to not work, I'm going to insist on a break every 3 months or so. This is more for mental health than anything. Now I'm not saying that anyone else should do this - if you've got something that's working, don't just stop unless you suspect that the meds might be making you more miserable. Then discuss with the doctor before you do - some stuff is rather nasty to cold turkey.

paradox wrote:HUbby just doesn't understand it when I burst into tears when another test comes back NORMAL! I'm glad you guys get it.

Some days I wouldn't even mind if the tests came back with something terminal that would put me out of my misery. Don't have those days often, but they are there.

Charlotte

yeah i know those thoughts well,

Charlotte.
I felt that the most with the Fibromyalgia. I thought I was gong mad. So many bizarre symptoms, no reason.
Test after test....normal range.
All they really do for Fibro is exclusion, and then the tender point exam.
I had them all....I hurt in places I didnt know I had....
Good news bad news...you have FMS....bad news.
Go away and deal with it....

I feel the same about migraine. I try to travel hopefully given I don't understand the why, but I am not on an endless pursuit.
Isnt it awful to "want" to have something "wrong"?

theresae wrote:

paradox wrote:HUbby just doesn't understand it when I burst into tears when another test comes back NORMAL! I'm glad you guys get it.

Some days I wouldn't even mind if the tests came back with something terminal that would put me out of my misery. Don't have those days often, but they are there.

Charlotte

yeah i know those thoughts well,

Me too. The last MRI I had, I wavered between wanting them to find something, and being relieved when they didn't. It's a crazy way to feel.

Well I'm glad that at least if no one else on the planet gets it.... We get it!! It's great having eachother for the crazy stuff like that.

Sometimes those thoughts make me temporarily turn into one of "those people" .... Doubting the validity of my disease and questioning mental health issues as the culprit. Because I'm like what the F is wrong with me to want something to be found on my BRAIN MRI??? Who WANTS that? Do I have some cousin to Munchausen Syndrome or something ????

Then I put it all in perspective, that no I have NOT lost my s*#!, I just want a problem that someone can FIX... Or at least SEE for that flippin matter!!!

Ok.. Whew .. It felt good to get that out!