Thursday, December 28, 2006

Who will you vote for?

Have You?
Originally uploaded by cameradawktor.
Well, today I had to give myself a shot. That makes 3 headaches this menstrual cycle. It was looking like it was going to be 2, but why be miserable. I had fought this headache all day, and was pretty mild, but was starting to pick up this afternoon. So i shot up.

The last two times I've taken DHE I have angled the needle and have had no leg pain afterwards. I mean, it hurts at the site, but I don't have leg pain for like 2 hours like in the past. Also, since the pain is milder the shot works in about an hour or so. So I'm feeling like a million bucks now. I got quite a bit of housework done today so it's not like in the past where my day is wasted fighting pain.

I'm beginning to think that maybe the botox did help. I mean, not drastically like I was hoping for and like I was told it would if it was working. But overall, it has made many headaches be so mild and disappear on their own. And, for the ones that stay it keeps them in a tolerable range. It could be the trileptal....or the botox. Who cares? I'm just glad something is helping.

I'm tempted to up my trileptal again to see if I get more benefit but I just did on the 20th, that's only 8 days ago so they won't do it yet. Perhaps after I get back from Thailand it will be a possibility. One great thing about my trip, is that about two or three days into it I will get to start taking prozac as my cycle approaches again. That seemed to be like a miracle pill for me this last time so I am so happy that it makes my chances of feeling good over there better.

Woohoo!!! :)

Wednesday, December 27, 2006

savior of the paraphanalia

aww...gotta love my new neurologist that is fighting for me:

"Not only do I not want your medication "paraphernalia" taken away, but I don't want YOU taken away. Letter's in the mail. Have a great trip, and I hope it's as close to pain free as possible"

*from when i asked him to write a letter to take w/ on the plane when i have to carry syringes on my carry on!*


Praise the Lord for Prozac....

gingerbread 2

I have had such a great streak since I started my 10 days (this time 12) of Prozac before my cycle on Dec. 12th. I had my typical migraine the night before my period started (23rd) but I also had a head cold and my period was late so I didn't realize what was going on. Instead of giving myself a shot like I should of I took a frova and it did nothing. So a few hours later I took another frova and it didn't help much either. I was able to go to sleep that night with the headache but woke up in the middle of the night with it. I considered taking percocet, but since it's not technically on my list I tried something else first. I took some bendaryl and an ativan, got an ice pack and went back to sleep. I woke up without the headache and eventually started my cycle on the 24th. *typical explanation for a drug resistant headache!

The 24th and 25th were fine and then the morning of the 26th I woke up with another one. It wasn't very strong at all but since I know what to do with my period headaches I went ahead and gave myself a shot. I tried to angle the needle in this time and my leg didn't hurt at all this time (except from the initial shot) so that was great. Of course I took the compazine 20 min. before and it really helped quite quickly. I was able to have a normal day. However, I did notice that all day I felt very agitated and restless, unable to sit still. Anxious I guess. I don't know if this was from the DHE, period or what but it was pretty annoying and I tried to distract myself as much as possible and went to bed early to avoid feeling that annoying feeling.
In 15 days I only had 4 headaches I had to treat, including 2 menstrual ones, so that is a great improvement. It will be interestng to see how I do now w/out prozac until Jan. 10th. That's 15 days. It's possible that prozac in general could help a lot so I need to pay attention to that. Also, since the 20th I've increased my Trileptal another 100mg. to 300mg. so that could be a factor but I was noticing improvement before that (because of the prozac).

Tuesday, December 19, 2006

nothing hardcore but nothing to sniff at either

hard core
my oh my, it has been quite a few days since i have posted here.

baby steps, baby steps....and while far from being PERFECT i have made a slight improvement. it seems that since i've been on trileptal, my pain level has stayed relatively on the mild side. although i've noticed that even without pain, my neurological symptoms still impair don't get too excited here. but decreased pain is nothing to sniff about!

also, on the 12th i started my 10 days of prozac for the month. i decided to take 20 mg. instead of 10 (the choice was to be determined by me). i have had fairly frequent mild headaches that have dissapated w/ ice, one that took frova and one last night that went away with 2 aleve. and, as i said, all with pretty mild pain.

so definitely a babystep of progress. we'll see what changes my doctors want to make to make this permanent (the prozac is only 10 days a month) and improve upon it. i see one of my doctors tomorrow.

Wednesday, December 13, 2006

on the same page

my personal rudolph
So yesterday afternoon I was fighting off a headache. I went to bed and woke up a few times. At 3 a.m. I finally took a frovatriptan. I couldn't fall asleep for about an hour when the frova kicked in. Praise Jesus for frova.

Today has been a great day, no pain at all and no side effects to speak of from the frova. Went for my walk, wrapped some presents, tidied up a bit and got a few other things done. Also made a good dinner and the handyman/friend/fellow churchgoer whose doing some work @ our house stayed for dinner. That's when I know I'm having a good day, when I can entertain. Also, Meyer D's youth leader's daughters came over to play with my boys while she was at youth group. Great day!

Yesterday afternoon I talked about how my friend called and I talked to him about getting some marijuana to try with my migraines. I didn't realize that when I was done blogging about it I just minimized it on the computer screen. My husband NEVER reads my blog/s. Well last night he did and never said a word about it to me. He's heard me make comments about wanting to see if pot works for my pain and has even chimed in with me but we have never talked about it. I've been nervous about doing so because I don't want to hear the word no. And I have a policy about not doing things that my husband has said no to, because we're a team and I don't want him doing that to me. Also, as I have said before, this is a big issue for me especially being a Christian and being active in my church. It's just not a very common way to handle a chronic pain medical problem.

Anyway, this morning I mentioned something to him about it, that I had talked to our friend about it. And he said, "I know." I said, "How did you know? Did our friend tell you?"

"No, I read your blog. It's on the www you know...."

He said he supports me but agreed with the friend that I need to do so with the permission and knowledge of my doctor. I know he's right, it's just not what I want to hear. It is so like me though to want to take control of my medical care and not trust that my doctors will meet my needs. I don't want to talk to them about something important and have them say what I don't want to hear: no or I can't help you.

So, I have a call into one of the social workers in my chronic pain group and will ask her how doctors usually approach this subject and under what circumstances they consider it. I am anticipating a strong negative response from my neurologist so I want to have a little more information before I bring it up. As I have said before, I have no intention of relying on it (if it helps) for the sole treatment of my problem. I just want it to relieve pain in times when I have exhausted my other resources. Unless he thinks it would be useful for something on a more regular basis for prevention.

I really don't know how it works. I am not a weed toker.

I will update more when the social worker lady calls me back. They are really pro patient so I need to accept whatever it is she has to say, and I picked the most liberal one to call....

Tuesday, December 12, 2006

when asked, a good friend will tell you the truth even when they know you don't want to hear it

crosses from the christmas my mother-in-law passed away
I wrote the other day that I was considering checking into medical marijuana. My plan was to try it and then approach my doctors to get a perscription for it.

Well, I don't know anyone who uses it, where to get it, how to do it, etc. I have a friend who used to, so I asked him about it.

He knew what I wanted to hear, because I could hear the change in his voice when he said what I didn't want to hear.

"Get it through your doctor."

He suggested I ask my doctor FIRST and try it through them. He had a point, I quickly realized that it may not look good for me if I've tried it, more than once and THEN ask. Perhaps it would look like I was just trying to get what is normally an illegal drug. He had a point. Makes sense. But it's scarry. Which doctor should I ask and when?

I don't think I'll ask my neurologist because I think he wants to try a lot of different things, which I would still like to try. It just takes so blasted long.

I think I'll contact the pain clinic I went through and ask them what the normal protocol is on this. I know these people are "on my side" and want to see my pain managed. Perhaps its reserved for people who have pain everyday. I don't know. All I know is that for the past few weeks 2 days is the maximum I've had between headaches.

I have one right now.

I'm hoping that I could use it sometimes as a "rescue med" when I've exhausted the other supplies of medicine that I have here. I know you can use it regularly to prevent them but it's probably not the best medicine of choice for that. But it's better than nothing, which is where I'm at now in the midst of trying to find something to work.

With how long the process takes it could happen in a few weeks (finding something to prevent) or it could take a year or more. It's just such a stinking long process, and all I care about is today and tomorrow.

Also, since it's ten days before my period, today was my day to start prozac and I've decided to take 20 mg. everyday. I had the choice between 10-20 mg.

Monday, December 11, 2006

no shaeking, verry breakable

christmas present warning
Yah, do you ever feel like that? The - don't shake me I'm breakable kind?

Yup, I was quite a grouch when I woke up this morning but besides it being time to start my 10 days of prozac before my menstrual cycle, I took quite a bit of drugs yesterday for the migraine. Think they must have had to wear off and the prozac had to kick in because I didn't feel good until around noon. Don't get me wrong, I was functional, just crabby. Trust me, it's been worse though, just an observation.

So the whole day, start to finish, has been great. Even made a nice dinner for the family and went shopping tonight for secret elf presents for some people we know. We are secretly taking them presents for the 12 days of christmas and since tomorrow is the first day, meyers d and i went shopping for all the loot we're going to sneak them. gosh it was fun. someone did it to us this year so we know how much this family of 10 is going to enjoy it...

earlier today I was wrapping presents while the kids were in school and noticed this writing on the two presents max-ay is giving tse. funny thing is, max-ay is the one whose been shaking his presents and trying to peek while they're being wrapped - stinker!

kids, what a goof ball!

Sunday, December 10, 2006

rough water and good times

starbucks, tracey and a cup of joe
Better start off with Saturday December 9th. Woke up with a headache so took the compazine and then gave myself a DHE shot 20 min. later. Of course, like usual, my leg hurt very bad for a while and I had to limp for an hour and a half, but because my pain was at a 4 when I took it, it didn't take very long at all to feel better.

I was able to conduct the rest of my day, to visit with my friend who was travelling from Montana and to go to Home Group which is a dinner gathering/fellowship time with people from our church. My head did start hurting late in the evening though. I tried so hard to watch what I ate (they ate chinese food and I ate a hot chicken sandwich). But we did watch a movie on a big screen, and like the last time I did that, the sound and noise bothered me. I am going to have to be mindful of that next time I'm in that situation.

So today, the 10th, I woke up with a headache. This is where it gets tricky because I totally had exhausted all the meds I could take w/ what I've been perscribed. I did take 2 Aleve but that's borderline whether I should have taken it or not. I went to church and wore my earplugs because I wanted to go and I was hoping to sell more calendars (I sold 1 :-) ) But my pain got up towards a 4 so I took 2 percocet which are my perscription but not something my neurologist wants me to be taking. After a few hours my head was still hurting so I went to Urgent Care clinic and got a torredol shot. An hour or so after I returned home my head felt much better. A few hours ago it felt like it was coming back but for some reason that feeling went away and I am feeling great now. I was quite groggy from the percocet for a number of hours but that feeling has subsided as well.

I need to scroll back on the blog here and figure out how many consecutive days I have been having pain recently because it's been at least a week. This is not o.k. for me so I think I'll e-mail the neuro tomorrow and let him know what is going on, looks like 6/10 days I've had headaches. Guess it was a little exaggeration today from saying that everyday this week I had one. Actually, I thought it was 6/7 days but things were a little better than that. Still with this kind of frequency, that's what it feels like!

Man I hope tomorrow's a good day! Oh, I was really tearful today, I don't know what was going on, could be something hormonal. Time will tell.

Well, this wouldn't be a truthful account if I didn't mention some of my thoughts recently. A friend of mine who shall remain completely anonymous said that her friend smokes weed. I've really been thinking lately that I would like to try it and see if it helps control migraine frequency or reduce pain. If it is something that helps I would approach my doctor and see if I could get a perscription for it.

I am quite nervous about talking to my doctor about it, but I also have a personal policy of being honest to the point of transparency. This is quite a big stretch I've reached, I think, to take this kind of drastic action, since it is illegal without a perscription. My main concern though, honestly, is to improve my quality of life. And, I have no intention of not pushing my doctors to provide this for me, or more importantly, give medical permission for me to use it if it helps.

There's a lot of controversy that surrounds this I know, especially as a Christian. I feel like in my own heart that this should be the last on a long list of things one should try. I have honestly no idea - exactly- how long the list of medications is that I've tried. But I noticed my neuro had about three pieces of paper stapled together of medications that I've taken/currently taking.

It's insane really. Everything I'm on so far is not doing it for me. I will have to increase dosages or add something else. Don't get me wrong, I'm totally willing to do that. But I'm also willing to try accupuncture, and I'm finding myself totally ready to try weed.

Of course I don't want to get caught, but I believe if fear is a thing I struggle with, I have more fear of my pain being frequent and/or out of control than getting busted for smoking pot. And, like I said, I must irriterate that I have ever intention of insisting that my doctor write a perscription for me if it works. I have a strong ethical need to be completely honest and I may even be so honest as to notify my doctor, before I try it illegally and let him know that is my plan.

hmmm....many things to think about.

another interesting week in the life of a chronic pain patient.

let's hope this last bit of honesty doesn't bite me in the butt, but then again, I am trying to deal with this problem I don't want and didn't ask for, the best way I can. And I'm trying to keep a humble approach about it all. Let's just say that more and more, I'm beginning to understand more about what others go through in life, and any judgements I've had, are slowly slipping away.

Understanding is a good thing, unfortunately it comes at a stinkin' high cost.