A little of this and a little of that

So a few things have happened these past weeks – I’ve been kind of processing the more important things, and so nothing has been reported on my blog.

First of all, I went to see my neurologist on May 4th. We didn’t change much because I was going to see my pain doctor the next week (and the pain doc and I are working on making changes). My neurologist and I did work out a way for me to have magnesium infusions. I first had magnesium infusions back when I was inpatient at Chicago. What was fantastic about magnesium was that there were no side effects but it entirely took away my headache pain. Fantastic, right? Right. Unfortunately, I haven’t been able to duplicate the results with oral magnesium. ANYWAY, back to the infusions. I was hoping I could use the infusions for those tough-to-break migraines.

And so I found myself at the hospital, in the infusion center on the next Monday. And somehow, for some reason, it didn’t work. I went with a normal headache – not even a particularly tough one. Soooo that is probably a no go from now on.

Then Friday the 14th I had my appointment at the pain clinic. I had a horrible night’s sleep the night before and so found myself trying not to puke in the office. The great thing is that I didn’t, and just laid very still.    I wasn’t in the best of moods when my doctor came in (one HOUR later) — but we went onward and upward. We talked more about the RFA procedure, and I asked him where he was with the insurance company. He’s called 4x and said he waited on hold for 20 minutes or more each time. *sigh*

So we talked about where to go from here – he felt like if we went through with the RFA and I got 50% pain relief (best case scenario), we’d still be working on something else to take care of the last half. And so the last resort has arrived. He says that if I were his sister, he’d recommend going the route of the Occipital Nerve Stiumulator. This video explains spinal cord nerve stimulators, which are the same idea. Spinal cord stimulators came first, and then they started to be used for intractable headaches/migraines in the cervical area. We’re working on scheduling a trial, and from there the real decision making will begin. OR it might just not work well enough, in which case some other decision making will have to take place.

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In other news, we just got home from Paris a few days ago. I would’ve loved to have told you about it, but then I also am paranoid and don’t want people finding us and burgling us. So I will tell you now, after the fact. Spencer & I went to Paris – we were there for 9 days. We were able to go because he had a poster at a conference there; and after going to other very fun places in recent months, he has saved up enough frequent flier miles so that my ticket was paid for! Yippee! It was very fun, and I will post pictures/details soon.

time out from vacation…

for another update on health.

This one is all about my back. Friday I saw my orthopaedic specialist (spell check says that should be Orthopedist) — this was my followup with him regarding the cortisone injection.

We discussed how it went, how badly it went afterward, and so then it was onward to the future. Basically he referred me back to my physical therapist. If you’re sitting there thinking, wait, isn’t that who referred you to the Orthopedist? you would be correct. But nonetheless, he says he thinks I will be best served by core strengthening exercises in neutral positions.

For the record, I was doing those before the pain started… in any case, I’ve been doing the revamped version since I got it. And somehow the pain is still here. Not only that, it is shooting down my legs more often and today even went down my arm! How’s that for a new trick.

I asked my ortho dr. about my concerns – trouble I was having walking/limping, and etc. He said better (for me) to walk correctly than comfortably (i.e. try not to limp even if it feels better) and that he didn’t have many suggestions beyond that. He recommended craniosacral therapy, but didn’t know much about it and could not recommend any providers. He said the PT could (she did). Still, doesn’t instill a lot of faith when this is your recommendation. You really think this is going to help? Hmmm…

So today I was back to the physical therapist. Thinking we were in for new exercises or something. No, she said we’ve basically taught you all you need, just keep challenging yourself to do better every week. She had the name of a craniosacro…ligist? and gave that to me. She also mentioned that going to the pain clinic was a good option.

When I got home from my Ortho appointment last friday, I could see where this was going, and just about came undone. It is looming before me — I’ve been through it once and so I can see the similarities all too well. This is becoming A Problem No One Knows How to Fix. I guess it’s been that all along, I had just hit on a kind of a solution myself for 9 years and had the audacity to think that was it.

So although I am less than impressed with what I’ve read about craniosacral therapy, I do know the people at the pain clinic well and have hopes that they could help me there.

The UNDONE feeling is just…that I don’t want more pain. If there’s one thing I don’t need, it’s more pain. Another situation to deal with, another group of symptoms to monitor, and all the while more pain. Of course everything now has to interact with migraine meds and chronic migraine needs. I woke up this morning wanting to throw plates against a brick wall and scream. I didn’t….but I still kinda feel like it.

A meme from my MIL

I have so little news these days – just trying to ride out the headaches. I did make my appointment for the headache clinic in Chicago – for March 5th. I’m going all in one day again. It seems like traveling is really hard on my migraines (not surprising), and so getting it all over with in one day is better than having two miserable days in a row.  

I’m in emails with my doctor (@ the headache clinic) to find out whether we’ll stay at this higher level of Tegretol and Baclofen. I had some blood tests recently – so we shall see!

It is also worth mentioning that the phlebotomist who took my blood got it in ONE STICK. This is like a miracle. It was pleasant. Onto the meme!

Four, Four, Four, Four…

A) Four places that I go to over and over

Smith’s (grocery store), church, the library, and Sam’s Club (my pharmacy!)

Let me know in the comments if you join in!   

schtuff

So here is an update from my little corner of the universe. it’s been 2 weeks now and i’ve been off the Emsam — the side effects are going away. my sleep is still getting back to normal. once in a while i’ll wake up at 3 or 4 and not be able to get back to sleep, but it’s the exception instead of the rule now. thank goodness. that kind of nonsense is unacceptable.

so the headache clinic told me to call yesterday and they would start me on the new preventative….soooo i call them up. leave a message of course. they call me back and say that my dr. doesn’t want to start me on anything until i come in for an appointment. ooookay. i’m thinking why did you tell me to call? i say that i have an appointment on the 30th of june and since i’m in UTAH i can’t come in any sooner (are you even looking at my chart or what?). so i’m somewhat irritated because this just continues my time being off any anti-depressant. which, frankly is somewhat sucky. i’ve been on an anti-depressant for 10 years. the last 3 years the dosage has been double the previous 7 years. so to be on nothing … it’s difficult to stay on an even keel.

so this little video cheers me up. it’s a video of jason castro on american idol. talking about and singing memory from cats.

my favorite part (ok, the part with the talking is much better than the singing IMHO…) is at about 1:25 when he says ‘this is kind of a popular song’.

ahahahahaha. so funny. i laughed till i cried.

mostly because that’s just about the understatement of the century. ooh hoo hoo.

The greatest discovery of my generation is that man can alter his life simply by altering his attitude of mind. — William James

am trying to keep this idea ^ in mind and keep my attitude positive these days! this past week has been one storm after another. additionally, my anti-depressant dosage (which is also the MAOI) has been cut in half. this is a good thing, as i am weaning off of it. that’s what i wanted, but i need 2 weeks of nothing before i can start onto another anti-depressant. and that leads to me feeling more down than usual.

if you don’t see me around your blogs – that’s why. i’m just kind of meh. not a lot to say. i am going out to lunch with some friends tomorrow, hopefully that will help.

decisions, decisions

hello again internet pals!

i’m glad you all enjoyed the bounty cat as much as i did. sometimes all you need is a laugh.

well my decision is made and i’m moving forward. it’s something of a compromise, really. the thing is, my doctor (who really is quite an expert, and whose opinion i greatly respect) wanted me to try another MAOI, one which is older than the one i am on now — Emsam. So they have had better results with the older MAOIs, but the patients also have more side effects, which is why they typically start out with this newest formulation, the patch. One example of an older MAOI (which you may be familiar with is Nardil.

so there are two big reasons i’m not jumping up and down to go onto an older MAOI drug – #1 is the side effects. i don’t usually get many side effects, but i got a boatload with Emsam. dizziness, increased appetite and weight gain, and sleep problems. the sleep problems was the most problematic, but the other two weren’t great either. if the older ones typically have more side effects….well, i think you see where i’m going with that. no thank you.

#2 is that they require a 5-6 day hospital stay to go onto the MAOIs. they want to monitor my reaction to the drug and particularly my blood pressure. i’m realllly not thrilled about that either. it sounds really immature, but i feel like i just got out of the hospital, and was not planning to go back anytime soon. i certainly wasn’t planning to be back within a few months. i just….pfft. the IVs, the needles, the nurses waking you up all night, no privacy. etc. etc. you know, it’s just the hospital. they do all they can to make it pleasant, and i recognize it could be much much worse. it’s not chemo – it’s just the headache and migraine ward. it’s just that i really thought i wasn’t going back for a long time. the idea of going back SOON is a little disheartening.

SO. my decision. my decision is to try something else first – which is, in this case a tricyclic anti-depressant. if this doesn’t work i will try the old MAOI my doctor is recommending. this will give me some time to get used to the idea of going back to the hospital (for less than a week!) and get some sleep stored up before i go back to an MAOI. hopefully i can get my body back to normal for a bit in case it goes all out of whack again. this time, if i see things getting messed up, i think i’ll just ask to stop immediately.

has anyone made it through to the end of this marathon blog post? wow, that was long. a gold star for you!

side effects

so far, this has been the most bothersome of the side effects i’ve experienced. my headache doctor just (at the last visit) bumped up my emsam patch dosage to 12 mg. it is an anti-depressant that is, in this case, acting (or supposed to be acting) as a migraine preventative.

however, it’s messing with my already low blood pressure and giving me dizzy spells, especially first thing in the morning, and when i get up from sitting or laying down. i do a fair amount of ’sit down before i fall down’ these days, which is annoying. but better than fainting and bonking my head. i also drink as much water as i can stand — the nurses at the hospital said that helps.

really, i am lucky — when i think of the dozens of pills and things i have tried for preventatives over the years, my side effects have been few. some nausea, a little weight loss, some weight gain…..but this has been the most annoying. it’s been less than 2 weeks now, so i’m hoping my body will still adjust itself to the dosage and the dizziness won’t be a permanent part of taking this dose!

an update on me and a question for you

i’m ripping off a question from my friend Kimberlie: what one beauty product can you not live without? could be makeup, could be hair product……lotion, even.

i’m dying to know.

for me, it’s a tie. i wear makeup nearly everyday, but almost always just eye makeup. so i can’t live without my lash curler and mascara.

now on to other business.

let me tell you about my latest homeopathic …..diagnosis.

first, let me praise sugar and flour and milk, because i am OFF THE DIET!!! hooray for eating (almost) anything i want!! no reading labels, no passing up on delicious looking desserts. hooray for being able to eat candy for christmas!!

so that obviously didn’t help, which is why it’s over. i went to see a homeopathic chiropractor, recommended by my homeopathic doctor for his diagnostic capabilities. and i have to say…it was interesting. i’m still not sure i really *believe* that his methods work, or are …real. HOWEVER, i am withholding judgment until the treatments have a chance to work. if they’re going to help, it will be within the next 2 weeks.

if you’re interested in the diagnostic methods he used, read this – obviously a skeptic, and then this, from the International College of Applied Kinesiology. i’m not going to go into it anymore than that.

but anywho, after spending an hour with me, we did a few chiropractic adjustments, and he developed 3 diagnoses that he says are contributing to my migraines.

1 – mercury poisoning. from my fillings. and i later thought of the fact that i did get 8 or 10 (i know) fillings the summer my migraines started getting more and more frequent…. i didn’t tell him that though.
2 – virus in my brain stem. would not have been detected in the spinal tap.
3 – my body doesn’t make enough neurotransmitters.

and so there are homeopathic pills and capsules and such for these things, which we went ahead with buying — i don’t plan to invest any more $$ in this area if this doesn’t help.

i *am* still looking for a recommendation for an acupuncturist. i think that area has some possibilities.

that’s my update, folks! don’t forget, tell me about your favorite beauty product in comments!

2 posts in 2 days?!?

You Belong in 1989

Wild, over the top, and just a little bit cheesy. You’re colorful at night – and successful during the day.

What Year Do You Belong In?

well who would’ve guessed. for those who are curious, i was 8 years old in 1989. a funny quiz. let me know if any of you take it.

(also, scroll down for footwear friday)

i’m hoping to get back into blogging more regularly. #1 for an emotional outlet. #2 to keep far-away family updated. talking about doctor’s appointments and diets and pills feels like my life sometimes, but telling the same story over and over…you get the idea. posting it here lets family (and friends!) keep up to date w/o having to call me and ask how i’m doing, what i’m trying.

so. how i’m doing today – really bad. the headache was just horrific when i woke up, and has subsided into miserable as i rest in bed. i’m still in the bad cycle that started about 2 weeks ago. my homeopathic doctor said it would get worse before it got better….and it has most decidedly gotten worse. i’m just keeping my fingers crossed for the better part! i’m still following my no sugar, no wheat, no dairy diet, and getting more used to it. i have eaten and entire jar (16 oz.) of almond butter in the month or so i’ve been on the diet. whoa. the bad cycle is supposed to resolve itself (and move onto the improvement) very soon, within the next 2 weeks. keep your fingers crossed for me!

tomorrow we’re having spencer’s lab group (and their wives/kids) over for dinner. i’m really looking forward to it, and looking forward to waking up tomorrow morning and taking my pain meds. sweet relief!