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Haven't been on in awhile...

post #1 of 14
Thread Starter 
For those of you who remember me :
So, I know I haven't been online for a long time... And I really regret it because this site is awesome. Well, I'm kinda back now. I've been in and out of the hospital, and now I'm in a state-of-the-art headache program/clinic in a private 5-star hospital in Chicago (gotta love insurance at times like this! There's no way in he** that I'd be able to afford this without it, definitely different than hospitals in Wisconsin lol). For those of you who know me still I'm sure you remember me complaining all the time about my headaches. Well, it got to the point where I couldn't take it anymore (I couldn't be on the meds I was on forever, it's not safe). Luckily I'm able to bring my laptop, so I'm still able to stay in touch with everyone.

It's not fun here. I guess the point of this email is to get as many as possible to make this less crappy and not as painful. I mean, just for instance yesterday morning they put in the first PICC line of my life. I won't explain what it is, because it's very graphic and I don't want anyone passing out lol, but those of u who do know what that is (I know there's some nurses and medical people on this site, so you'll know what I'm going through). They have finally stopped the drugs that were making me feel pretty sick (DHE). But I'm having issues sleeping, and since I'm not on my pain meds at this moment (they're kinda like "detoxing" me off of them) my headaches are back full-power. But it's a pretty cool place, I mean people come from all over the world to be in their program. Just a little tidbit- I don't know if any of you have ever heard of the migraine medication called Imitrex, but if you have, well, it was created here. And from what I heard it was a HUGE stepping stone in the treatment of headaches around the world.

The worst part is that I feel very alone here. I don't feel like leaving my room much, I don't feel like doing much, and I'm not exactly next door to my parents in downtown Chicago lol.

Actually that isn't the worst part lol. My doctor here said that the normal stay for a person in the inpatient unit is 5-7 days, but I will be here at least 10 days, probably more. Which means I don't get to see my cats for a very very long time, I don't get to see my boyfriend for a long time, no friends, na-da. And I just started school again, and just like in the past, just as school starts I end up going into the hospital. So I'm probably going to have to drop out of classes again and be put on academic suspension for the 4th time (I always appeal and get probation). But still, it doesn't look good on my records.

Just lookin' for some to help me here. I'm on the verge of tears every moment I'm awake, both from pain and from all the emotions that are going through me at this point. I never thought I was this sick, but apparently I am. Or at least I feel it. Like, I'd never thought that I'd need a PICC line, but now I have one. I just wanna go home. I know I'm here for a reason, but I don't think I can handle this. (see, even just writing that I'm starting to cry- what a great adult I make lol! I've been crying like a baby since I got here lol)
post #2 of 14
Sorry you're going through all this. Sending lots of TCS your way. Who's looking after your kitties while you're in the hospital?
post #3 of 14
Hola y bienvenido nuevamente a TCS, ...Catulina y Milky te saludan!!!........
(Translate: Hi and Welcome BACK to TCS, Catulina and Milky say hello to you!!!...)

I´m so sorry what have you passed my friend......and yes... whos looking for your kittys?...



I hope you find not only old members, but also new good members here, Please feel again as your home and ask whatever you need to know, there are plenty of good members and of course our tireness Mod´s to help us here!....

See you on the forums!, Glad that you re-join us!
post #4 of 14
Missy,

I am so glad you are in there, and hopefully they can find a solution.

and many that your 10 days goes by fast.

(you can always email me if you need to, you know that(
post #5 of 14
I had a PICC line! Only I think I told everyone about it, and probably shared photos (ok, maybe a link to photos... ). They're kinda freaky huh?

I'm glad you're getting good treatment, fingers that it helps.
post #6 of 14
Thread Starter 
Quote:
Originally Posted by Snake_Lady View Post
Missy,

I am so glad you are in there, and hopefully they can find a solution.

and many that your 10 days goes by fast.

(you can always email me if you need to, you know that(
I know, I'm really happy that I got in here. They approach the treatment of headaches in a VERY different way, a way that I have never ever experienced before in my life. I just learned today that since I'm done with my DHE treatment that they are going to have me on Benadryl and Noraflex (sp? it's a muscle relaxant) every six hours, and I got my first dose of Benadryl at 6, meaning that I'll be getting the muscle relaxant at 12, and so on and so on. And that's going to go on for the next few days they said, so I'm pretty much going to be zonked the entire time lol. It's kinda funny, I was sitting in a chair when they gave me the Benadryl, and within seconds my head was bobbing down, and I immediately "migrated" over to my bed and basically passed out cuz otherwise I knew I would hit my head on the floor, and dat no good . But the nice part is that since they give it through my PICC line right into my bloodstream, it leaves the bloodstream pretty quickly because the body is constantly creating new blood and stuff. So I was able to shower and everything so now I feel really good and am in the big fancy room overlooking Lake Michigan and Lincoln Park (pretty dang cool if ya ask me, yay me! I know, I'm a dork.....)

Chris, you of all people know EXACTLY what I'm going through, even the nitty gritty details *ahem . I'll probably shoot you an email whenever I'm not feeling dazed and confused lol, or feeling like jello with that muscle relaxant. Definitely gonna keep ya posted girl.

Quote:
Originally Posted by sarahp View Post
I had a PICC line! Only I think I told everyone about it, and probably shared photos (ok, maybe a link to photos... ). They're kinda freaky huh?

I'm glad you're getting good treatment, fingers that it helps.
HOLY CRAP are they freaky! Just the thought that a tube is sitting right above my heart is creeping me out, and the fact that that vein goes into my armpit is even weirder. At least now alot of the initial pain has gone away, it's just when I move a certain way I can feel the whole thing which I find super funky (blech, just thinkin' of it, ewwwwwww). Unfortunately I don't have a camera with me here, only my phone and that thing is pretty darn useless. It's nice to have someone know just how weird it is. Initially, I thought that IV's were MUCH better and this would only get in the way. But it's not- it's much better. Obviously the vein really can't burst like an IV lol, and since it's in that vein the meds they give me rush all over my body like RIGHT away cuz it's the blood being pumped away from the heart. So I guess there are a few perks to it, I just wish that they would've sedated me a LOT better before the procedure instead of just giving me a shot only minutes before they brought me down (those shots take a while, and it didn't kick in time that's why I was such a basket case but then again I'm always a basket case when it comes to stuff like that. It's basically fear of the unknown I think that really gets to ya.


It's nice to know that there are people here that understand and are giving me ALOT of support. That's what I need right now- I don't think that I would have the strength to stay here this long on my own without the support of others and other people outside of here to talk to.

Oops, battery is dead gotta run to my room and plug it in. I'll b back tho!
post #7 of 14
I don't really have any advice for you, but I do have and prayers! So here ya go, lots of them!
post #8 of 14
Ugh a PICC, they spook me. About the only thing I think would be worse, that you're awake for, is a cardiac catheterization - I hope I never become the victim of one of those.


I've heard of others with intractable migraine having to use a balance of antihistamines, painkillers, and migraine meds. I hope they can find a treatment that works for you. Sadly, one person's intractable migraines would only respond for a few months to the above mention treatment before they'd break through again. I hope that won't happen to you, or at least it will be a while.

I used to have really bad migraines - up to three a week if they even stopped. That switched from constant migraines with occasional headaches to constant headache with occasional migraines. I have a headache every day, if it ever really goes away at all - it's always there, but haven't really sought any treatment for it. There's little that could be done.

I get the ice pick's too... .they're weird. Do you have difficulty standing during a bad attack of them?

Silly question, but being a hospital I assume there's plenty of fluorescent lighting. How do they deal with that and having people in for migraine and headaches?

The most I've spent in the hospital is four days. I was going a bit out of my mind with boredom. It seems like you get stuck in some weird time warp being in the same exact room every day under the same artificial lighting...

Good luck with whatever tests and treatments they try. And I hope you get out soon. I'm sure you'd love a bit of fresh air by now.
post #9 of 14
Good Luck and get well
post #10 of 14
Thread Starter 
Quote:
Originally Posted by strange_wings View Post
Ugh a PICC, they spook me. About the only thing I think would be worse, that you're awake for, is a cardiac catheterization - I hope I never become the victim of one of those.


I've heard of others with intractable migraine having to use a balance of antihistamines, painkillers, and migraine meds. I hope they can find a treatment that works for you. Sadly, one person's intractable migraines would only respond for a few months to the above mention treatment before they'd break through again. I hope that won't happen to you, or at least it will be a while.

I used to have really bad migraines - up to three a week if they even stopped. That switched from constant migraines with occasional headaches to constant headache with occasional migraines. I have a headache every day, if it ever really goes away at all - it's always there, but haven't really sought any treatment for it. There's little that could be done.

I get the ice pick's too... .they're weird. Do you have difficulty standing during a bad attack of them?

Silly question, but being a hospital I assume there's plenty of fluorescent lighting. How do they deal with that and having people in for migraine and headaches?

The most I've spent in the hospital is four days. I was going a bit out of my mind with boredom. It seems like you get stuck in some weird time warp being in the same exact room every day under the same artificial lighting...

Good luck with whatever tests and treatments they try. And I hope you get out soon. I'm sure you'd love a bit of fresh air by now.
Oh, what I wouldn't do for that fresh, CLEAN downtown Chicago air!
I do have a hard time standing! I always say that if I were to get a real bad one while I was driving I'd go off the road. When I get them I grind my teeth and cringe, usually make a fist with one hand and hold my head with the other, and just put my head down. They're bad, they're crippling. And honestly when I get one I always think "If I die now, that would be wonderful" lol even though they only last a few seconds tops, but then they can come back in the same place again and again, or go to a different side of the head. I think that the DHE treatment that they had me on has made them migrate to the right side of my head... Right now I'm actually having a smaller one kinda by my right temple... UGH!!!!

They've changed my meds around a little today, increased some things and decreased some things so that should work. One thing I'm hoping is that the increase in the anti-inflammatory will really help. But I'm soooo happy that the DHE crap is over, I just felt sick on it. But now I feel sick cuz of the withdrawals, so I really can't win . And the doctor that I had this morning (my doc will b back 2moro) said that right now a lot of this is still withdrawals and that she gives me at LEAST till Tuesday next week till I feel somewhat human again... That's comforting- NOT!!!

As for the lighting... It's pretty cool what they do here and in their clinic in the Children's Hospital (totally separate building). They have those recessed lights that are in the ceiling all over. In their office, they had like these "walls" set up where the lights came up from the top of the wall inside the wall and reflected off of the ceiling, so there is no direct light. In the room that I'm sitting in right now there is this wood-ish looking wall thing that is kinda in the shape of an S in the middle of a mostly round room with all windows, and when it's darker out there is light that comes up from inside the wall and reflects off the ceiling. It's pretty cool, this whole place is created for headaches, right down to those little details. I'm just noticing right now that the windows in this "room" are kinda tinted, I think because it is overlooking Lake Michigan and it is VERY close to the lake, so it seems brighter.

I know there are quite a few headache/migraine sufferers on this site. If they are constantly interfering with your life, I really do recommend checking this place out. Even if you are not near it, like I've said before people come from ALL over the world to come here and be a part of this program. Or at least go to their website (PM me, I'll give the info) and check it out. Maybe there is something there that will help you. Trust me, as much as I'm "bitching" about everything right now, it really is the coolest thing ever (even though some of it is corny, like the biofeedback lol).

(plus there are a LOT of young medical students/interns that are really hot lol, which is always a good way to boost my spirits lol!)
post #11 of 14
Oh man that bites what you are going thru but I hope they find something that works. As a fellow headache/migraine sufferer I feel your pain. I get headaches EVERYDAY and when I work myself into exhaustion on comes the migraines I usually have one atleast once a week and it always happens from Friday till Tues the following week...I dont have insurance so meds are out of the question..I usually dose thru out the day with a combo of excedrin migraine and ib profen...I used to have good pills that worked amazingly..but I cant get them anymore and if I took one I passed out within 30 min of taking it....I wish you all the best of luck
post #12 of 14
Hi from another headache sufferer! I just want to wish you all the best and hope the treatment works for your headaches!
post #13 of 14
Quote:
Originally Posted by mismaris777 View Post
(plus there are a LOT of young medical students/interns that are really hot lol, which is always a good way to boost my spirits lol!)
LOL They can make you feel like death warmed over, but they can't kill your sense of humor.

My headaches are in a large part caused by lack of blood to my brain from low blood pressure. I take a vasoconstricting drug that helps but ultimately laying down helps headache pain the most. Can't spend my life in bed, though! I doubt any headache clinic would be able to deal with autonomic nervous system issues - that would be completely different clinic, like Cleveland Clinic for that.

I'm glad to hear the place is nicely designed. Migraines under bad lighting are terrible. The scariest one I ever had was in 5th grade... during band class. The lighting made everything very very weird - colors and shadows were all inverted. That really taught me to avoid bright lighting and especially fluorescents during a migraine. It would be a form of torture if they didn't take that into account.

I haven't had an ice pick headache while driving... scary possibility. With them it's not so much the pain as the suddenness that catches you, you're simply not prepared. Sort of like something suddenly came out of nowhere and hit you in the side of the head... repeatedly.
I tend to mostly get mine when I'm standing. Bright sunlight seems to be one aggravating factor.


More that you're not stuck in there too much longer.
post #14 of 14
Thread Starter 
Quote:
Originally Posted by 3CatsN1Dog View Post
Oh man that bites what you are going thru but I hope they find something that works. As a fellow headache/migraine sufferer I feel your pain. I get headaches EVERYDAY and when I work myself into exhaustion on comes the migraines I usually have one atleast once a week and it always happens from Friday till Tues the following week...I dont have insurance so meds are out of the question..I usually dose thru out the day with a combo of excedrin migraine and ib profen...I used to have good pills that worked amazingly..but I cant get them anymore and if I took one I passed out within 30 min of taking it....I wish you all the best of luck
I'm sorry to hear about the insurance thing- I've never really liked insurance companies, they always tend to mess stuff up. I just feel VERY fortunate to be able to come here, because I know there are people out there that can't afford it and I feel blessed that I can. When I didn't have my pain meds, I used to take Excedrin but then I found this stuff called Vanquish and it seemed to work very nicely (well as nicely as an OTC med can at least.) It is kinda the same as Excedrin, but there must be something different in it's chemical make-up that worked better on me. Maybe you can try that? I would get mine at Walgreens, so I'm sure that you can get it at any drugstore. I would also try to drink a lot of green tea, so if you haven't tried that then you may want to.

Quote:
Originally Posted by Jupeycat View Post
Hi from another headache sufferer! I just want to wish you all the best and hope the treatment works for your headaches!
WOOT WOOT! Shout out to my fellow headache peeps! . I swear, with the amount of people on this site that suffer from headaches they should just make a section on this site for headaches lol. (hint hint mods )

Quote:
Originally Posted by strange_wings View Post
LOL They can make you feel like death warmed over, but they can't kill your sense of humor.

Yuppers! The doctor that did my PICC line (I think he's called an interventional radiologist) was amazingly cute looking. Even through my sobbing and crying and freaking out at the time I was still in love. It's a good thing that my boyfriend isn't anywhere near here!

My headaches are in a large part caused by lack of blood to my brain from low blood pressure. I take a vasoconstricting drug that helps but ultimately laying down helps headache pain the most. Can't spend my life in bed, though! I doubt any headache clinic would be able to deal with autonomic nervous system issues - that would be completely different clinic, like Cleveland Clinic for that.

I'm glad to hear the place is nicely designed. Migraines under bad lighting are terrible. The scariest one I ever had was in 5th grade... during band class. The lighting made everything very very weird - colors and shadows were all inverted. That really taught me to avoid bright lighting and especially fluorescents during a migraine. It would be a form of torture if they didn't take that into account.

I haven't had an ice pick headache while driving... scary possibility. With them it's not so much the pain as the suddenness that catches you, you're simply not prepared. Sort of like something suddenly came out of nowhere and hit you in the side of the head... repeatedly.
I tend to mostly get mine when I'm standing. Bright sunlight seems to be one aggravating factor.


More that you're not stuck in there too much longer.
I'm sure that they would take you on as a patient, because they take on ANYONE who has any type of migraines.

Bright sunlight seems to bring on all my headaches, that's why I don't like to be outside all that much in the summer.

I'm starting to get used to the thought of staying here for a really long time. I mean, it's a fact that I have to accept and if I don't accept it then this whole time here will just be he** for me and it won't work. I'm thinking that I might head downstairs to the gift shop sometime tomorrow or something and shop lol. As long as we're not hooked up to an IV pole, then we're allowed to go anywhere IN the hospital that we want (honestly at this point I'd rather go out and have a few cigarettes lol).

I keep thinking: Just keep swimming, just keep swimming, just keep swimming, swimming, swimming (for those of you who don't know what that is it's from the movie Finding Nemo lol).

MMMMM, dinner trays are here now. Can't wait for that yummy hospital food!!!! WOOHOO!!!!!
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