Murphy? That You?

Some days I feel like if it isn't one thing it's another. My migraines aren't getting any better. My neuro originally increased my Topamax from 50 to 75 mg and that almost literally did nothing. 100 mg dulled it to somewhat tolerable for almost a week but I could still feel it in that one spot. Then it started getting worse but my neuro wanted me on it for 3 weeks before we did anything.

My insurance, denied my doctors request for a CT scan as not medically necessary. Not sure where to go from there. I fit criteria listed on their paper denying it but the nurse said there was no point appealing it.

I'm in pain daily. And now, to top it off, I need my wisdom teeth out. I'm not even bothering upping meds until that's over with. Just have to get in to have them pulled ASAP. The whole right side of my head is in constant pain between my jaw and my migraines. I can't take much more. It's driving me crazy. I've been in near constant pain since May.

My electrophysiologist increased my Atenolol to 50 mg in the morning and left it at 25 in the evening. He offered to switch to a different brand that had a better rate of crossing the blood brain barrier but the draw back to that is that one had a higher instance of making you sleepy and that I wanted to avoid with Narcolepsy.

So my order of business:
1. Get kids off to the new school year.
2. Get wisdom teeth pulled so the crowding stops putting pressure on skull.
3. See if that helps with headaches.
4. Adjust meds/beg for further help accordingly.
5. Seriously consider a new HMO that isn't a PITA.

There's probably more but there's a drill drilling into multiple areas of my cranium. I meant to update sooner (like after each event) but I've been so irritated by everything and the pain. I'm just fed up.

Neurology and Migraines

It's been two weeks (on the 4th) and I still have a bruise. So 12 days and it's still clearly visible. The one the IV stayed in is nearly 100% gone. If not completely. I don't know what in the world happened but that is ridiculous. I don't think I have EVER bruised that bad for this long!
In other news. My neurology appointment was today. She increased my topamax to 75 mg twice a day, which both boo and yay. Hopefully it helps but boo because now I'll be taking 6 25 mg pills a day. (I'm guessing it only comes in 25 and 50, could be wrong but the nurse said that's what she was calling in.) 3 per dose. I had a headache in office so the nurse (per doctors order) gave me a shot of 60 mg Toradol in the hip. I barely felt it as opposed to the IV. It also didn't 100% cure the headache (85-90%) and it's already coming back less than 3 hours later. I'll take a nap when I'm done writing. See if that helps.
She gave me a booklet on Xyrem and wants me to think about it. I told her I would but I don't think I could with the kids. JSmiley stayed up until 2 last night and I had to get up with Big Daddy at 5 (wake him up for work) then actually get up at 5:40. Big Daddy could sleep through an earth quake so even though I'm the one dx with Narcolepsy, I'm the one who has to be responsible for everyone. Even my neuro said that isn't fair, and it isn't, but I have to do it.
I also convinced her to order a test. She didn't want to because apparently she was under the impression I had frequent flier ER miles (when I've only been 3 times for migraines). And also under the impression that my ER actually did any tests. Nope, I knew what was going on (though not why) and my ER just treats and streets so after a little discussion she agreed to check my chart to see if I'd ever had a CT and order one if not (even though I said I rarely go, I suffer in silence and the only testing I'd had was when I'd fallen, at 4). But I guess she checked because after I got my shot and was checking out the receptionist said it was ordered they just had to get a prior authorization from my insurance to schedule it and they'd be in touch. The only sucky part is, it's without contrast and my medical friend said that's their quick emergent go to, to check for head bleeds. I guess something is better than nothing but if the CT w/o contrast shows nothing will she pat my hand and go "See, it was normal." To placate me. Like all my cardiologists did, or order further tests, just to be sure. I mean she was SURE I couldn't POSSIBLY also have Narcolepsy on top of every thing else. I'm not inviting trouble but we all know every time the doctors stop at basic tests "I'm fine" but once they do the "There's one last test we can do." My dx list gets a little bit longer. We shall see.

MOOOORE Migraines

So for the second time in a month I wound up back at the ER for migraines. This time I went in when it had only been 24 hours. I usually only go as an absolute LAST resort, I don't want to be THAT person but I can't do it. The whole right side of my head felt like it was being squeezed in a vice. I'd barely drank, barely ate. Ibuprofen was barely dulling it. None of that "It goes away for a few hours then comes back" bull. I was dehydrated and dizzy. I needed fluid too. I figured it'd turn into another recurrent migraine that'd be blamed on me (rebound) so I went after 24 hours. Plus this time I've been on my migraine rx the WHOLE time. Last time I thought it was triggered because I use one of those day/week planners and forgot to call in the refill and went a few days without. I've been on it since then and I'm still getting them.
The doctor (was an actual doctor, not a NP) and asked what they'd done in the past. I told him the only two times I'd been they'd given me Stadol and Phenergan. He asked if I'd ever tried Reglan, Benadryl and Toradol. I've never tried the combo but I guess he was asking if I'd ever had the meds in general. I've had Reglan before to ill effect. I went to L&D once for severe GERD symptoms and a resident refused to listen to me and gave it to me. With GERD you need a PPI (or Proton Pump Inhibitor) or it does the opposite. It felt like my throat was burning. The nurse came in expecting me to be "Yup, all better" and ran back out of the room when I said "No! My throat is burning now!" (When she asked if I was feeling better) "What do you mean burning?" "I TOLD him I have GERD and couldn't have that." Anyway, back to the present. I thought maybe he'd replace the Reglan with a PPI like Protonix (what the nurse in L&D had to give me in the other instance) but he substituted it for a low dose of Phenergan. I thought between the low dose of Benadryl and Phenergan I'd be knocked out but surprisingly I wasn't. I was super tired though. I got to the ER at 9:30P, into a room at 11:30, seen by doctor at 12:30A and home around 2:30A. With Narcolepsy, even without those meds I'd be tired.
I'm glad I didn't sleep half a week like the other med combo BUT, I guess I was hoping for a headache reset button and both times I got headaches again quick. Although I guess the second was better for less severe, less longevity (since I didn't need the sleep to recuperate/let my head heal). I know it was stupid to expect a reset button by going to the ER. I know I have CHRONIC migraines. I guess when I'm in pain I don't think straight then when I get another I'm disappointed the pain relief didn't last. Can you blame be though? Very little physical pain can move me to tears. Labor before an epidural got some tears and childbirth after a failed epidural hurt pretty bad too. I have several tattoos, I refer to them as cathartic and even tell people a few nearly put me to sleep (though some I'd rather never repeat, ow). But seriously. Big Daddy had to exert some serious counter pressure just to allow me a modicum of piece and describing my pain to mom, "It felt like I wanted to cave my skull in." I can take pain in general. I can't take pain from the time I wake up until I fitfully fall asleep, all day every day for who knows how long or when dehydrated beyond what I normally am.
The nurse tried to put an IV in just below the crook of my arm but "it didn't take". Possibly from dehydration? I'm not sure how that works but it's bruised in a streak and the darkest part is furthest from the puncture. So then she moved to my inner wrist and diagonal. That was the most awkward area I've ever had an IV to date and I'm pretty sure the bottom of my thumb has played IV host before (though that was pretty awkward, it had a purpose). It's bruised too but not as bad, I'm guessing since it actually "took"? My arm looked MUCH worse all week (the two bruises were almost connected for sine reason!) but I was embarrassed by how BAD it looked so I didn't take any pictures until today when I decided to blog except the ones I took in the ER. I'd have taken more once the IV got set up, she put the green bandage stuff on me etc but she turned the light back off for me and my phone was dying and the whole photophobia thing. Ok, I think I got some pictures, with flash where you can kind of see how large the bruise was. It's faded a whole lot now but still noticeable. It was 10x worse before now. I'm getting a slight headache and it's a minute until midnight so I'm going to try to post and sleep. Hopefully it loads. Fingers crossed since I'm trying to add 2 pictures.
And now I'm having to edit for pic errors. >.>

Migraines and Medicines

One week until my neurology appointment. I wish Big Daddy could go with me but I doubt he will get to. I'm not even sure he will be able to go the 31st. I don't want to go to either of them alone. Firstly, I hate driving half an hour (EP is 45 minutes) one way, second, I need a GPS, I don't know how to get either place. Big Daddy drove me to the EP and the neuro moved offices so even if I remembered exactly how to get there, I don't know now. That's on my "To Do" list. Worst case I'll get directions from Big Daddy and try to get someone to go with me. Logically he can't go to both, he doesn't get paid for not being there and one day cuts into the check enough without the added day.

I have no clue what to expect. They want to put me on a stimulant to wake me up during the day but it would raise my heart rate. If the dose of my beta blocker is increased would that negate the effect the stimulant has? Obviously I'm "thinking out loud" here, I plan to ask my doctors everything but I'm impatient and a week seems so very long when you're in the dark.

One of the potential drugs I'm thinking will be a complete no-go. I'm going to try not to come off offensively but this one threw me. It's called Xyrem (Sodium oxybate), also known as GHB. My ignorance was in assuming it didn't have a legitimate purpose but apparently, it was created SPECIFICALLY for people with Narcolepsy. I don't think I'd be a candidate since I have small children and Big Daddy sleeps like the dead but even if I were, it'd scare the crap out of me. I've watched entirely too much TV with that drug used in sexual assaults. That's not my concern, I'd be here when I took it, but JSmiley still wakes up, so do the big 2 on occasion. Or if an alarm went off... Big Daddy could sleep through a hurricane. It's just not a good idea.

And then there is the migraine that just. wont. QUIT! I can't remember exactly when it hit but I know it was the 15th, probably after I got home. It's been coming and going since then. And the one yesterday, the migraine meds didn't get rid of it. Nor did I sleep it off. It just dulled it (granted I went from nauseated, stabby feeling and over 75%blurred vision/blind - to just sharp (SHARP) but less intense throbbing). I haven't taken it often though. I was going to take it again but I'm not sure how much is ok. It says 2 every 8 hours as needed though by those standards I'd have been SOL since that would've put me close to midnight. A friend of mine is on a very higher dose so I'd have been ok (as in, an extra dose wouldn't kill me - my friend is/was on quadruple my dose). But it dulled it to tolerable. I can still feel it though. I'll be ok until my appointment. I'd be "ok" either way but if i have to have a recurrent migraine, I'd rather have dulled pain over full pain (though of course it goes without saying, I'd REALLY prefer NO pain). More later.

Long Whining Post

Hello 1 AM. We meet again. Not that it's surprising but boy I hate it. JSmiley is awake. Big Daddy said he was too tired to help get her to sleep. I'm not fighting her. She can just lay here with me in the semi dark until she decides to go to sleep. It kind of worries me sometimes, all these health problems of mine. I'm afraid that I'll have passed on something to them. JSmiley has my sleep patterns. When Big Daddy isn't here to help, she sleeps when I sleep (or I sleep occasionally while she sleeps, sometimes she won't sleep when I'm tired and sometimes I can't sleep when she is). The big 2 sleep much better though occasionally DCourtly will keep SDiva up. And prevent people from napping. All my kids nap. I don't know. It's just something that worries me.

I went and saw my "temporary" primary. My primary is STILL on extended leave so I saw her nurse practitioner. I do not like her. At all. She seriously rubbed me the wrong way. I'm guessing she was old fashioned. She looked like she was old enough to retire. I was there for a mole on my back and to try to get something for my anxiety. While updating my medical history, she "couldn't find" some of my conditions.... So she improvised. NCS was put in as "Cardiogenic Syncope" and "neuro syncope" and who knows what else. Oh and she asked me if my ex-stepfather abused me since the only thing that changed the year I started having anxiety was my mom got with Big D's dad and had him. And you know how much I already can't stand most NPs. She DID write me a prescription for prilosec though. And an antidepressant (I asked for something for anxiety). I'm not going to take it though. I know nothing about it, she's weird and I don't know what kinds of changes they'll be making to my meds when I see my doctors. I know my neurologist was going to switch migraine medicines, my electrophysiologist will probably increase or change some of my meds (another topic for another day) and one or both need to sign off on a treatment for the narcolepsy. And one of them or the sleep center is going to prescribe something that the other(s) may agree with. I go back to see her mid-next month to remove the mole. If she still rubs me the wrong way I'm calling my insurance and switching. That's how bad I didn't like her. And she set up an appointment for counseling. I'll try it. I don't like counseling either. It scares me. Especially considering I have all these problems and have heard for years it's all in my head.

I don't know. Oh and I mentioned the pain I've had for years which I hated doing. You read all these medical blogs about drug seekers and I already have this instant mistrust that doctors won't believe me because of, you know, the 13 years of having no one believe me. And because all my conditions I got multiple doctors telling me the vast multitude of tests were either normal or caused by something easy AND only doing "last resort" tests when I pushed and insisted. And what do you know. It was those last resort tests that found the NCS and Narcolepsy.

But I'm always in pain. My back, upper, middle and lower. My neck. (I was in 2 car wrecks several years apart that did some damage and saw a chiropractor) My legs occasionally, ankles sprain/twist easy. My left foot has bothered me periodically since I broke it as a teen. My arms hurt, I can pop my elbows just by extending my arm. My fingers hurt and pop (so does my back and neck). Not to mention migraines. I'm in near constant pain. Often in multiple places. I don't want narcotics, hell I don't want some of the little stuff. I took ibuprofen yesterday because my upper back between my shoulder blades and lower back was killing me. Regular strength. 2 of them. I could have taken at least double (I've taken 1000 mg or 5 regular strength for a migraine). I don't like taking all these pills. The only reason I'm not skipping the Atenolol and Midodrine is because I NEED it and the birth control is because it'd be down right dangerous for me to get pregnant as sick as I am and on these meds and whatever they're going to put me on.

I rarely go to the ER or doctor for pain. I've been to the ER TWICE for a migraine that lasted DAYS and would NOT go away no matter what I did (I know, not an emergency but by the time I gave up trying it was Friday night and I'd have gone postal if I waited until Monday). I've also never been for regular pain. The car wrecks I went for the car wreck and don't even remember if I got anything, the only thing I remember was the chiropractor. The migraine (one) I got a shot. I don't even know what it was called but that shot knocked me out ALL. FREAKING. WEEKEND. I've complained of back pain ONCE at the ER but not primary complaint. I had bronchitis AND walking pneumonia to the point I was gasping for air and coughing up a lung (again, not really an emergency and I wouldn't have gone except it was night, I layed down to sleep and couldn't breathe and started gasping for air). The coughing irritated my back. I got some medicine with a T which I quit taking after like 2 days because either the narcolepsy gave me hallucinations of my bed shaking (which my primary said was ANXIETY) or it gave me tremors. I'm not sure (and this was 2010 so way before I had any diagnosis) but whenever I'd wake up I'd have the feeling that my bed was shaking. It scared the crap out of me and of course I read all the print outs and the side effects of it and the cough meds they gave me said those side effects were common so I quit that too (high strength cough medicine) and switched to tylenol cold. And suffered for a month. All of this has been over YEARS, dating back to when my mom was pregnant with Big D (1st car wreck she was a couple months pregnant) and he'll be 14 in November. I've never asked for drugs, I don't take anything unless I'm in absolutely agony and can't function. I want to know what's causing this pain and how to ease it. I carry a stick of mentholated stuff (kind of like icy hot?) in my purse to help take a little edge off (doesn't take the pain but it helps a little bit). I take hot baths and soak my muscles. I beg Big Daddy for massages and I only take OTC meds when I can't get any relief and can't handle it. I hate drug addicts and would rather suffer than risk becoming one but it's constant and like all my other problems, I want to freaking know why.

She gave me a look and said next time we'd talk about x-rays "or something" but that I was already on "so much". Nothing for pain, no kind of narcotic, no sedatives or any of that stuff. I'm on Atenolol, Midodrine, Prilosec and birth control. (And prescribed an antidepressant that I'm not taking). I don't even want to take that because I'm afraid how it will affect me (even if I didn't have everything else). I just want the pain to stop, to know why, I want to other issues to go away. I'm fast becoming completely fed up with my health. Ugh.

Not to mention, I slept 12 hours yesterday and had a migraine. I guess almost passing out at Walmart drained me. Big Daddy keeps saying "NOW do you think you need an electric cart?!" Yes but not happening. "I'm asking your doctors." I'm 23 for fricks sake. It's embarrassing. And I haven't publicly mentioned narcolepsy except to a "secret" group on facebook and to a handful of people in my life. I know people will automatically assume the same thing I did (which is cataplexy but not many people realize narcolepsy doesn't always mean falling asleep and losing muscle tone like that - that's narcolepsy WITH cataplexy) and I'm embarrassed. And Big Daddy keeps making little jokes so hell no I'm not posting it on facebook. Yet.

Oh and the woman at the sleep center told me to get a medical bracelet/necklace for the narcolepsy. I was going to ask my EP if I should, now I'll just ask him what ELSE I should put. She also told me to get some kind of alarm since I'm always home, usually alone (no adults just me and kids) or ALWAYS keep my phone on me (which I do, Big Daddy got some pointed looks from me on this part of the conversation) or the key fob so I could trigger the alarm if I needed help (and have a neighbor know that it meant that). Ok more later. It's 2 AM+ and JSmiley is only mildly entertaining the thought of sleep.