Thursday, December 26, 2013

Merry (Belated) Christmas

Technically Christmas is over here, it's the 26th now. It was fairly decent. The girls got a lot more than I expected, Big Daddy's twin sister, Aunt J got them a TON of stuff including an android tablet and a kids digi cam for the older two and a bunch of little stuff, and a few toys for JSmiley. We got the big girls each a handheld game system. J got a million and one baby dolls. Barbies are every where. Clothes, shoes and toys from Nana. Barbies and babies from Granny and Uncle H/Aunt B (and so many more!)
The girls went to Christmas breakfast and lunch with Nana, who was visiting friends and relatives then we (all) went to late lunch/dinner at MIL's. I cheated a smidge on my diet but one day won't hurt much. In fact, I think a cheat day every so often (unless it includes a food that's dangerous, none of my cheats are anaphylaxis inducing) helps keep you focused. I did very well with zero subs or cheats for 3 weeks but then I was going nuts with cravings. That one cheat settled it down (and even reaffirmed why I was doing the diet) and I was happy as a clam.

But I need to get back on the roller coaster now that my holiday cheat day is over. I'm down to 150/151 and I'd like to keep losing just a little. I'd also like to tone/shape but it's so exhausting. An exercise that says it only takes 20 minutes ALWAYS takes me an hour and I'm exhausted forever. Of course that was 34 pounds ago. Maybe it'll get easier?

Anyway, just wanted to wish the blog sphere, especially all the spoonies a belated Merry Christmas (happy holidays). I'm including one of the blooper pictures taken at MILs, watermarked but mostly unedited. I don't like posting pictures publicly of the kids (really anyone/thing) as people can be horrible and steal them to use for ill/trolling but it just doesn't go over as well distorting a Christmas card(ish).

JSmiley wouldn't quit petting her sisters, I was trying to get her to quit/focus on Granny, daddy was watching both of us and DCourtly blinked. Never a dull moment trying to take a decent picture.

Saturday, December 7, 2013

Positive Reactions To An Allergy Free Diet

It really is hard to juggle illnesses sometimes. I'm laying here, awake, at 1 AM scouring Paleo/allergen blogs for new recipes. It's so difficult to juggle multiple allergies. It's rare that I find a recipe that doesn't include any of my allergies that I'll eat. And when I do, it usually includes some kitchen appliance I don't have. Let's face it, having an autonomic disorder, I've never been one to spend hours in the kitchen. If Big Daddy cooked it was fast, if I cooked it was something I could throw together in minutes and go rest between checking or even microwave processed crap food or even take out. I don't have that luxury any more.
Granted I won't complain TOO much. The food is excellent and I've lost almost 30 pounds but it's exhausting. Sure I can rest while it's cooking but eating this way usually involves prep. I was cooking the other day and got severely dizzy after putting chicken in the oven. I'd used all my pre-made (by me, not store bought) sauce/glaze/whatever and I have to brush the chicken again halfway through cooking so I started making more. I didn't get more than the wet ingredients into the bowl and mixed before I had to throw it in the fridge and go lay down. Checked my blood pressure and it was low even AFTER the severe pre-syncope passed. Top was low 80's bottom was high 50's/low 60's (57 - 61). Yes, AFTER the vertigo passed. Then, when it was all said and done, I went to remove the chicken from the oven and burnt my wrist on the shelf. It didn't blister and Big Daddy bandaged me up with some gauze and burn cream but over 2 weeks later it still feels really dry and slightly discolored. It's fading though.
I've taken to doing the extensive prep work sitting down in a room other than my kitchen. If I'm feeling poorly, Big Daddy will even bring the ingredients to me. He's even done part himself quite a few times. But, he doesn't like cooking, doesn't think himself capable. He makes a mean breakfast sandwich, like to die for. But he's very much dependent on the simple way, boxed, pre-packaged. None of which I can eat. I can't even eat that scrumptious sandwich any more unless I'm prepared to face the upset.
I've found a few recipes that are delicious and allergen free (free of mine, anyway) but who wants to eat the same handful of recipes over and over again. They're good (delicious is too mild a word) but I need variety. I do fairly well avoiding soy (except ALL the vegan/dairy free substitutions I've read about, like the vegan butter, veganaise (vegan mayo) etc, at least the ones HERE, all contain soy). So I found recipes for dairy free, egg free, soy free butter, mayo, ranch, ceasar dressing, etc. Talk about awesome! Yea, not so much. I mean, the recipes claim it's as good as store bought allergen versions but they all need kitchen appliances I don't have, so for now I'll just have to wait.
I had to go re-read what I wrote last time to see how much I needed to update. I officially tested egg white, I'm allergic, officially tested dairy (cheese) and am allergic. Cheese is the cause of my acid reflux. When I'm off dairy I can even stop the prilosec. Mostly anyway. I had a few infrequent flares over the last two months but over all, if I avoid dairy I don't need it! Tomato I kind of cheated the test. I don't like tomatoes except mixed in with my taco soup recipe and since I'm off dairy, I can't eat that. So I've been sampling condiments containing tomato/tomato paste. Like ketchup, barbecue sauce, steak sauce, etc. By far it's the least reactive to date. I have a very minor reaction, I can barely tell. I still react but minor, I can ignore it mostly. But it kind of feels wrong. I got tired of mustard being the only condiment I could consume and I NEED (ok, seriously want) extras. I've always been the type to need sauce, gravy, condiments, the extras you know. In a way, I feel that since avoiding allergens helped me lose a bunch of weight that otherwise WOULD. NOT. come off, and how much better I feel (stomach and GERD wise at least), that I should avoid all the ones I react to. But on the other hand, it's a mild reaction and I'm going stir crazy without tomato based foods/extras. 
I gave in and ate pizza. Of course it gave me heartburn, my stomach felt angry and I feel as though I need to down a bunch of fiber. I had a really REALLY bad craving for pizza and chinese food for DAYS and didn't feel up to cooking for myself so I gave in and ate some. It was delicious but I felt like crud. I need some easy recipes that don't take a kitchen full of fancy appliances, 30+ minutes of prep and an hour or more to cook. Even the soup recipes take a long time or require multiple steps or leftovers (that took equally a long time to cook). I miss just being able to throw something on the stove or in the microwave and from start to finish be done in 30 minutes. But I like not feeling like crap. I need a new kitchen and a lifted bar stool/lounger or something. But who has that kind of money on one income. One day though.
In the meantime I guess I'll make do with what I have, what I can find, and try to incorporate previously untried foods. And hope I don't react.
Furthering on that, my dys is unaffected by my new diet. At all. My heart rate is still as wild and the dizziness too. I believe the severe near syncope episode from the other day had to do with switching from a beta blocker to a calcium channel blocker (so my allergist would take a more hands on approach to me). I quit taking it and my topamax. No frequent migraines (I can count the number I've had)! No GERD! Lots of weight loss! Obviously this diet is right for me. But my dys is still acting up. I'm going to try the CCB again now that the topamax is out of my system (both claim to lower blood pressure, the T alone never affected me, so I'm going to see how I do on JUST the CCB. Ok I've rambled enough. More later.
The picture is of my burn immediately after it happened.
I wonder what the etiquette is on posting recipes I've found online. Just link the original, post the recipe AND link the original, or what. I don't know, I'll figure something out. I have them all written down but I don't want to step on toes.

Saturday, October 26, 2013


*Peaks head out from behind curtain* I know, I know. I'm a sucky bloggist. It is what it is. I hate trickling information but it probably would've been more informative to keep up as it went along.
Nothing much ever came of either scan. I have no clue what the bone narrowing was or wasn't as the bone scan was clear. It was a very cool test, but clear nonetheless.

The sinus cyst appeared to just be mucus (gag) deep in my head and she said the symptoms I felt weren't from it but from allergies and sent me for the injection test. I believe I was stuck in the arm 51 times, with 19 allergens and reacted positively (allergic) to 16 of them.

Furthering that, the office where they did it tells you to avoid antihistamines the week before but also beta blockers (mine) and additionally, milk and some others. I had to reschedule because I got a sinus cold and took meds that I couldn't (on the list) after being off milk/dairy a few days then going back on it, and had a reaction. Then after I completed the test (going off dairy again) and eating dairy again, I had another reaction. Adding that, plus the arm results, and the way I react to pumpkin, she sent me for a RAST test (blood allergy). The results were 3 pages long.

The summary, I'm borderline allergic/sensitive to egg white, milk, cod, wheat, peanut, soybean, corn, orange, chicken, apple, scallops, clam, oyster. Actually full on allergic (low level) to tomato, crab, crayfish. Moderately allergic to shrimp, tuna, and lobster. I have other low to "very high" environmental allergies (detailed in the skin test PLUS the ones that were negative on the skin test, were positive/borderline on the blood test). I left her office with a prescription to an epi pen.
At first she wanted to do allergy shots but changed her mind when I reminded her I'm on beta blockers (since they specifically said not to take them for the test because the meds they give for an allergic reaction won't work). She's afraid the shots would give me an anaphylactic reaction and the beta blocker would hinder treatment. Nice huh. So shall I AGAIN repeat what I say every few months about one treatment of mine canceling out another?

Now most people may wonder how I didn't know about the moderate seafood allergies, those at least are more bothersome (especially if "borderline" milk makes me react after not eating it for a few days) and the answer is simple. I don't and never have eaten shell fish. Ever. But my goal recently was to get over my picky ways and eat more foods, had actively, if slowly started, with success, started trying and liking new foods I'd never tried. So eventually I'd have probably tried it.

Right now I'm midway through week 3 of a modified elimination diet. I haven't had dairy, egg, soy, wheat, tomato, seafood (tuna or any other non shellfish I've ever tried), SODA (I've had 5 sips/swallows, literally) in almost 3 weeks. Today is day 19, and as an fu to the NP who told me to simply cut soda, my heart still races and skips beats, yes no soda is much healthier, but it did NOTHING for my heart rate. I had an oops where I was exposed to cheese on Wednesday though. I went somewhere with Mom and they had breakfast foods and I stuck mainly with the meat but mom and her boyfriend said to just pick the cheese off the potatoes as there wasn't much so I did thinking it'd be ok. Wrong! I only ate a few pieces and within a few minutes felt awful (and for the rest of the night). So contaminated food, made with dairy, even if you remove the cheese STILL COUNTS NEWBIES. Lesson learned. "Luckily" dairy intolerance is just GI for me and not anaphylactic. Around the beginning of November, after a month of no everything listed, I start slowly reintroducing to see how I react. I'm still going to officially test dairy. I noted my oops but I'm going to still officially test it.
This was REALLY itchy.

Thursday, August 8, 2013

Spines and More

I'm not sure if I should classify this as an "Ask and ye shall receive" or if Murphy is just fucking with me at this point. I think it might be a mixture of both. My neurology appointment was the 2nd of July when the CT was ordered and subsequently denied 2 weeks later. My neuro's answer was to just keep upping meds. Murphy said ok, I'll provide but it's going to hurt a little bit.

Yesterday Mom had off so I was over there and we were all doing things we had to do/errands and she was taking me to sign SDiva and DCourtly up for school (had to wait on DCourtly's kindergarten physical first). I was walking down her concrete sidewalk/steps/path holding JSmiley when the front of my left flip flop folded and tripped me. I tried to brace roll since I was holding JSmiley and hit my knee first but kind of tucked her to me and rolled. I hit my foot/toe, knee, hand, elbow and head (damnit Murphy). JSmiley has a pea sized abrasion on her left ankle. That's it.

I was diagnosed with a contusion and abrasions and they did xrays and two CT scans. One of my head and one of my C-Spine. They didn't find anything from the fall, and I don't know if anything has any bearing on the migraines but they found a cyst in my sinus (sinus cyst) and bone narrowing on my C7 vertebrae. Also known as a sclerotic lesion.

You know how discharge papers say follow up in 1-2 days blah blah. Mine say tomorrow (today) and you know how if you don't call they don't call you? Well, the PA I saw gave me muscle relaxers for my neck and I woke up feeling like I got hit by a bus so I took one and fell back asleep intending to call them when I woke back up, but my phone rang at like 8:13 AM. It was my PCP's scheduling department. The ER had connected them about it so THEY called me and now I have to have a bone scan on the 14th (6 days). How bad was it?

Guess I'll find out.

I called my neuro but it's a different hospital system so unless my PCP will send the file I have to go sign a release for them to see it. I don't think they've called back since 12 so I'm assuming they did get it. But I see my PCP tomorrow at 3 to follow up on the sinus cyst and head trauma then Wednesday I have to be at the hospital at 8:30 for a 9 AM appointment. I'm guessing for prep/paperwork.

Everyone is quick to ask me if one of my conditions caused me to fall and really, it wasn't the full thing. I was having a bad day, I was tachy with minimal effort, zero energy, face tingly, just felt like crud. But the biggest issue was I just tripped. Now, was my balance off because I'm sick? Who knows. I'd ask what next but I'm pretty sure I don't want to taunt Murphy.

Monday, August 5, 2013

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.

Thursday, July 11, 2013

Syncope or Not

Pretty sure I passed out last night. Kind of? I'm not sure exactly what happened (like usual) but like usual lately I had a migraine all day. Took my meds as normal but it wasn't cutting it so I broke down and took some Gabapentin. It didn't over power me like it usually did (or completely take the headache away) but it helped some. Around 1:15AM I took some more. Big Daddy and JSmiley were sleeping, the other girls stayed the night with Big Daddy's twin sister. Anyway, I crawled over to Big Daddy and kind of straddled him and pressed my head against his back for counter pressure.

The next thing I know, my eyes pop open and I'm looking around in confusion/disorientation trying to figure out where I'm at, why I'm there and I roll off/over and everything is "asleep". My knees and elbows are on fire. I reach over and grab my phone and light it up. It's 2:21.

I'm laying there freaking out thinking how the hell did that happen. What just happened. Was it the NCS? But I've never lost awareness for that long. Was it a combination, passing out from NCS and the Gabapentin making me sleepy? Narcolepsy has never made me lose consciousness like that. Big Daddy sleeps through hurricanes and kind of mumbled through me trying to tell him so I gave up and just went to sleep (after my limbs woke up). But seriously. An hour? What the hell?

Tuesday, July 2, 2013

Your Claim Is Denied

A little wind out of my sails tonight but I'm getting right back in the game tomorrow. SSDI denied my claim, again, despite my extensive list of disorders. Last year when they denied it they claimed I could work fast food, this year (in FEBRUARY) I made sure to let them know I can't even SIT upright for 8 hours, much less stand, thanks to my NCS. They are claiming I can do other work, that it isn't severe enough. Which first, my NCS is severe. My heart stops. It isn't often because I take preventative measures SUCH AS STAYING OFF MY FEET!!! *sigh*

"While you do have Neurocardiogenic Syncope, Narcolepsy, and migraines your episodes are neither so frequent nor so severe that they limit your ability to work."

Let's stop right there. The month of May I had a migraine nearly 21 out of 31 of those days. Not frequent my ass. The month of June I had one almost daily to some degree. I was in the ER TWICE in June and got a shot today for migraines ON TOP OF WHAT I TAKE OTC AND BY PRESCRIPTION. But y'all, that wouldn't effect my work. Nope. I can work from the ER or cowering under my pillow. My NCS and IST, what job will allow me to LAY down when I need to? Not to mention, I get dizzy EVEN WHILE LAYING. Expanding on that, I get dizzy in the heat and if I'm not hydrated. WHO WILL WORK WITH THOSE LIMITATIONS? AND expanding on that, I'm FAIRLY positive the only reason I've managed to go so long without fainting is because I'm not doing anything. Narcolepsy. Just fuck you guys. Maybe my boss will understand Zombie Sierra. Or the brain fog. Or maybe that 3 hour nap I need to take if I don't get a good nights sleep. Heaven forbid I find a job around here that involves NO strenuous activity where I can recline that I also DON'T need to talk to strangers.

"Your drop in blood pressure has not resulted in severe complications."

Yet. But if I push it could. And did I mention my heart STOPS?

"Your mental health conditions have not affected your ability to understand, remember, cooperate with others, or perform your normal daily activities."

Wrong on the last one. I'm 24 and occasionally have to have my mom or husband make phone calls for me. I get this claustrophobic feeling in public too and need to get away if I feel boxed in.

"Your fast heart rate does not prevent you from working. The evidence shows no other condition which significantly limits your ability to work."

Except I need a rest after WALKING up my stairs. Much less after actual WORK.


"Your condition results in SOME LIMITATIONS in your ability to perform work related activities. We have determined that your condition is not severe enough to keep you from working. We considered the medical and other information, your age and education in determining how your condition affects your ability to work. WE DO NOT HAVE SUFFICIENT VOCATIONAL INFORMATION TO DETERMINE WHETHER YOU CAN PERFORM ANY OF YOUR PAST RELEVANT WORK. However, based on the evidence in file, we have determined that you can adjust to other work."

My take on that is: "You're sick, we admit it. You have limitations, we don't know what you can do but we're pretty sure there's SOME job out there you can do. We just don't know what. If there was one, I'd do it. If I had a job I could do that would work with my health, I'd do it. I don't have just ONE health condition, I have several. I'm sick of the run around. This is bs.

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.

Tuesday, June 25, 2013

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. >.>

Saturday, June 15, 2013

Food Intolerance

Food Intolerance. I don't remember if I've mentioned before but certain foods make me feel bad. I need to ask one of my doctors. I asked some online friends and one thing that stood out is MSG Intolerance. Two of the foods I know I react to are Chinese food and Campbell's Chicken Noodle. According to fooducate, the soup has MSG and according to google MSG intolerance is often referred to as "Chinese Restaurant Syndrome,” referring to that fact that MSG is commonly found in Asian-style foods. 

I'm not sure if that's what it is but it's EVERY time I eat those certain foods, the two mentioned and more. Every time. So logistics says it HAS to be me reacting to the food. Or rather, some part of it. I've started a food diary of sorts. I'm going to try to get a list of foods in the next month that make me react that way specifically.

Another friend said studies have pretty much proven MSG symptoms are psychosomatic or coincidence but I didn't link it to that until someone mentioned it nor did I consciously link it at first that "Hey, every time I eat x, y and z, I get weak/dizzy and have to lay down." And how would that be coincidental. Every single time. Even if it isn't MSG, SOMETHING in the food is causing me to react. Plus some people say other things are psychosomatic whereas others say it's real and it's treated. Who knows.

Friday, May 31, 2013

I Hope June Is Kind

May has been hard on me. Which is messed up considering it's my birthday month. The headaches lasted most of the month and truth be told haven't fully gone. They just haven't been as bad as earlier this week. I'd probably still be cowering under a pillow if it weren't for the shot at the ER since my neuro wasn't any help. Maybe I should research and print some stuff off that way next time I go I'll be better prepared. Don't get me wrong, I don't dislike her, she's not bad, she could just use some improvement. She's better than some of the doctors I've had, not as good as some/not as good as I'd like. She's a step above the ones who treated me like there was nothing physically wrong with me. Oh she knows I'm sick, just not with x since we've already said it's y, or it couldn't be anything serious blah blah. Honey, have you LOOKED at my medical history lately? Every time you (general) assume it's nothing/simple, it's the opposite.


I got off on a tangent. I can NOT stand to freaking be ignored or treated like I'm ignorant/overreacting/etc.

Anyway. Other than The-migraine-that-would-not-quit™ I've been feeling like crap this week. This month in general but more so this week. Sunday around 2 it was out of control so I took some meds and decided to head to the doctor. By 3 it was dulled but I was determined to get seen anyway so we left. Of course they stuck me with a NP (have I ranted here about my dislike of most NP before) since a migraine for 2.5 weeks isn't emergent apparently. Which I suppose they're usually not but they can be dangerous. I feel kind of sorry for her getting stuck with the silly cases but really. Anyway. She misunderstood me. She asked what happened and I said I guessed it'd been triggered when I accidentally ran out of my migraine meds because I have a week supply I carry with me in my pill box thingy BUT THAT I WAS BACK ON IT AND IT STILL WOULDN'T GO AWAY and no amount of OTC meds helped much either. I guess she missed the big I put in all caps because she ordered the shot and wrote me an rx for my migraine meds. Now don't get me wrong, I wasn't there for drugs, I appreciated the shot, would've been fine with no rx but I was KIND OF hoping to find out why it wouldn't go away. And what caused it. Still better than my neuro so I can't complain haha. (Disclaimer: I know testing is my doctors job, I'm not mad at the NP for not running tests).

I guess that's my problem. My neuro doesn't seem to want to do that. She (or her nurse, to be fair, I just spoke with her nurse) just assumed I was taking too many meds and it'd stop once I quit. I'm sorry, tell that to the pseudo ice pick embedded in my skull. Even without taking meds sometimes I'll get migraines several times a week. Is it normal to treat the migraines without finding out WHY they exist to begin with?

Perhaps it has something to do with the broken blood vessels in my head I had as a newborn. Perhaps the fall I had onto my head off the top of a slide when I was 4. Or when I fell down the stairs when I was 2. Or some damaged nerve. Or maybe it's connected to one of my conditions. Or maybe it's a symptom of something more. Seriously, though. Is it normal to just treat symptoms without knowing the cause? Especially when the symptom is pain so severe it makes a grown woman with a reasonably high pain tolerance cry and want to bash her head against stuff.

Got side tracked again. After the shot I still felt minor pain. I don't usually take pain meds so I'm not sure if I was supposed to still feel it but it was mixed with phenergan so I slept off and on until 2 AM when it returned with a vengeance. I woke Big Daddy up and we discussed going back out there but by 5 AM phenergan won (plus a little counter pressure) and I was able to fall back asleep. I slept most of that day and really part of the next. The first day if I tried to sit/stand for 5+ minutes I'd get weak and dizzy. Second day I could manage a little more. I've felt aches but no where near pre-shot. About half. Plenty of dizziness, heat exhaustion, racing heart. Wednesday I drank more water in one 3 hour period than I drink in most days.

I guess my body got semi used to winter and the migraine/shot combo plus heat drained my "spoons" so this week kicked my behind. BAD. Or the alternative I don't want to think of. My body is not ready or capable of facing summer (yet?).

Thursday, May 30, 2013


So it's been 4 months since I've written. I've started to a time or two but decided against it. Ultimately there's only so many times I can say the same thing over and over before it gets old, only so many posts in which I can whine before even **I** get annoyed.

This month has been somewhat difficult for me. I had a migraine that just would NOT quit. It lasted nearly 2.5 weeks before I broke down and went to the ER. I'd called my neurologist but they brushed me off and assumed it was just a rebound headache from taking too much medicine. Only I wasn't. The bottles say no more than x in 24 hours and I was always under or at that, I just broke it up differently. Instead of 2 ever 6 hours I took 3 every 12 so I'd still be in the safe zone. And that was because the 2 weren't touching the pain. And I wasn't taking the same medicine the whole 2.5 weeks. I switched it up. You know how the bottles say discontinue if it lasts more than x days. Yea. So it's not like I took twice the recommended dosage every day for 20ish days. I took THE recommended dose or LESS for a few days then switched and took the recommended dose or less and so on and so forth.

I'm more than a little tired of doctors not believing me. Big Daddy woke me up the other day and said I was acting out a dream where I was in a club with some people, not just talking. Actual acting. He's also mentioned I've kicked him and pushed him out of the bed numerous times. My neuro just said sleep talking is normal and refuses to investigate since I'm not actually physically lashing out in my dreams but like I told her, JSmiley (or any of my kids) lays on my arm and I don't move as much. When it's just me, or me and Big Daddy, I move a LOT more. What pisses me off about that, is that is classic REM Behavior Disorder (hi, remember that's what she thought I had before the other guy said if it wasn't that it was definitely narcolepsy). See, I don't remember how much I talked about it but since I had so many other issues she thought I had RBD instead of Narcolepsy (the pulmonology sleep specialist said narcolepsy) so she sent me to the neurological sleep specialist. He asked if I'd ever acted out dreams and I didn't know if I did so I said no. So he said until proven otherwise, based on that and my sleep studies, that it was narcolepsy and not RBD. Now I'm trying to tell her I'm kind of acting out dreams (let's be real, it's embarassing telling your neurologist your husband woke you up because you were acting like a stripper in a club while you slept) but all she would say is it's normal to talk in your sleep and unless I'm hurting people it isn't an issue because the meds they use to treat RBD go against one or more of my other conditions. Story. Of. My. Life. Ok but while sleep talking is normal I'm pretty sure the rest isn't. I wish she'd take me seriously. For once.

To be continued.

Thursday, January 17, 2013


Not much happening on the home front. My insurance reversed it's previous decision and approved coverage for Provigil (Modafinil). Prior to me seeing the neurology sleep specialist, back when my regular neuro was saying she didn't think I had narcolepsy they said I had to try Adderall add Ritalin first. They had proof of my severe sleepiness (from the MSLT) but since she didn't believe I could possibly have so much at 23, she didn't give me that diagnosis. I'm guessing that's what stopped me from getting a medicine for narcolepsy. I start it next week. I've been back on Topamax for almost 2 weeks. A week at once a day and 4 or 5 days at twice a day and while my headache intensity is decreased, it isn't gone. I've also read Provigil causes migraines. Joy.

I increased exercise. I'd been infrequently walking 2 miles no problem so one day I decided to try for 2.5 miles. I'm not sure if it was the fact that I only took half the atenolol or lack of proper hydration but the last two laps I had frequent palps. I went with(one of) my best friend(s), Britt, 2 days later, took a whole pill, had fun, took gatorade (usually Big Daddy has water but he didn't join me last time). Zero palps. Then it rained for 2.5 days. Went 1.5 miles on the 3rd day once it quit a bit and came home to attempt some light regular exercise. If it goes well I'll update on it too. But for now I'm all snowed on. More later.

Friday, January 4, 2013

Appointment Rambles

It's 8 PM and I'm yawning my head off. We got up this morning at 7 this morning, got paid, breakfast and store. Went to my neurology appointment then to fill my prescriptions and lunch. That was it for my energy. I've been feeling off since Walmart. I'm trying to re-coup my energy. I'm full of yawns, I'll finish shortly.

Yea, shortly didn't happen. Guess yesterday really did drain all my energy. It's 5:33 AM. I've been up since 4.

So to recap. Yesterday we went to get paid then got breakfast, a charger (Big Daddy's dog chewed up all of his), and personal items. Went home and ate. Breakfast was bad. I really dislike McDonalds breakfast most of the time. Big Daddy drove me to my appointment then played angry birds on my tablet. He gets bored sitting still doing nothing. My doctor was amazed that I *really* have both narcolepsy and neurocardiogenic syncope. The neuro sleep specialist who consulted on my case never got back to them so she didn't even know I'd seen them. I couldn't remember the exact date before but I saw him on Halloween. I did tell her it was in October. I told her how he said the sleep study was positive for narcolepsy and barring proof otherwise that's what I have. She was just like "Ok". She looked and commented "Well the tilt test was positive so you really do have both." Yes, yes I do. I went on to explain how the pulmonology sleep specialist thought my NCS was cataplexy and why I knew it's not and how the neuro sleep specialist ruled out other REM disorders since I don't act out dreams. All in all she wound up calling me "special" since "complicated" sounded mean lol. She wrote me a prescription (well, sent it) but I'm not sure which and it won't be ready until tomorrow sometime since they had to order it.

Left there with an appointment for Feb 12 and went to Walmart to get my prescriptions. She called in more topamax too. We got there and it wasn't ready so we walked around (which is why I like using Walmart, regular pharmacies are too small). Got a movie for us, one for the girls and a game (well, 3 in 1) for the PS3. Can't find any multiplayer games we both really want. Got the topamax filled but the other hadn't been called in? I don't know why they'd come in 30 minutes apart. Walking around Walmart drained me. Went and got food and went hinge where I've been alternating between laying and sitting in bed since. Got tired and fell asleep just after 8, woke up long enough to scoot over and back out till 4.

We were going to watch a movie last night but that just wasn't happening. I'm already yawning and it's only 6:20. Ugh. More later.

Wednesday, January 2, 2013

Narcolepsy and Goals

So far the new year has been mellow. I did 30 minutes on the stationary bike and walked my steps a few times (the last wasn't for exercise, more necessity that just happens to be "exercise"). I need to stay on the ball and keep up with minor exercise. I can't walk the track every day but I have the bike thing in my house so as long as I feel ok I should be doing it. I haven't yet today but it's still morning.

Tomorrow I have an appointment with my neurologist. I haven't been taking the topamax but I plan on discussing it with her. I still need to find a gynecologist that accepts my insurance. I called my primary for a referral and they don't have to do that anymore, my preferred gyn doesn't accept my HMO, my old gyn doesn't accept my HMO, and the "computers are down" at my insurance company so they're supposed to call back with a list of some who accept it. Seems like the Hags of Fate have something against my reproductive organs. This is the only field I have had trouble in almost since JSmiley was born. I've had troubles multiple times just getting birth control, cycle problems, then when I finally gave in and set up an appointment, they don't accept my insurance. Fine let it slide and now again, don't accept it. It really should not be THIS hard to get care for womens health issues. I got in to my EP easier than this. If I could go through my primary they'd be the ones to handle it but no. Ugh. I'm on my last refill of birth control too (well, about to refill it).

I'm nervous about how tomorrow will go. She wasn't convinced I have narcolepsy (though I'm not sure why) but the neurology sleep specialist didn't really do anything. Just asked questions and said the test was positive so until proven otherwise, it's narcolepsy. I downloaded the ebook by Julie Flygare, Wide Awake and Dreaming. It's her memoir on living with narcolepsy with cataplexy. She's offered it free twice on Amazon so far (which is how I got it, I don't have the ability to buy new books until tax time). I read it in two sittings since I got it after 9 PM and went to bed a little while later. But I read over half in one sitting. It was inspiring in a way. I know I don't have cataplexy so it's not the same but I have NCS and IST so I think it'd kind of even up. She graduated from LAW school, ran a marath and wrote a book. I may not be able to do much but reading her book makes me want to find a goal and strive towards it. I already have minor goals, you know, first is to improve a little, to where I don't get tired/sick just by being out. I want to improve my fitness too and lose weight. Those are my goals that were already in place. I've always wanted to be a writer too but I doubt that will happen. I'll find something. Anyway. I'll write more later on (or after my appointment).

Tuesday, January 1, 2013


(Belated) goodbye 2012, hello 2013!

I woke up long enough to get my new years kiss from Big Daddy and went back to sleep.

Here's hoping 2013 is a good year!