Monday, October 30, 2006

success in a syringe

confusion
The other day I described the body scan I do, or head scan, as soon as i become concious in the morning. This morning I was "50 % gone." Because I know that during this "hell week" or week of menstrual migraines that I will virtually have a really bad one every day, I decided to try to knock it out A.S.A.P.

Thursday evening when I gave myself the shot it went from bad to worse, so I was a little nervous. I had a fitting for a mouth guard @ 12:40 that I didn't want to cancel, but I had to take the chance and shoot up the DHE. I was confident that if the pain got bad that I could take the anti-anxiety medicine to help cope with the pain, and have someone take me to the doctor for an I.V. if I needed it. My hubs was sick with the flu today but I have a lot of friends who've offered to drive me when I'm unable.

First I took the compazine (anti-nausea med) because DHE can tend to make you nauseous. I waited 20 min. and prepared my syringe. When I was doing it I began to wonder if I even got the medicine in on Thursday afternoon.

Finally I psyched myself up and stuck the hurking 3 in. long needle into my thigh and slowly pushed the medicine in. I'm quite a good shot taker since as a child I spent seven years getting weekly allergy injections. It's just a little different shooting up yourself!

I know to keep your muscles relaxed or you can have a lot of muscle pain @ the site, and I am really good @ doing that even though I'm nervous. I probably gave myself about a 100 imitrex injections before. But as the medicine went in it really hurt and I had to just keep pushing it in. Fortunately it's only 1 ml. of medicine.

Almost immediately my thigh hurt so bad. I probably limped around for an hour. This helped me determine that I absolutely did not give myself a proper injection Thursday. It didn't hurt at all.

It's really no surprise I had difficulty Thursday as my pain was so high. Even when my pain is half that my thinking starts to really get impaired and slowed down. It takes me a long time to concentrate and think about something. This was what it was like when I was getting the syringe ready that day, but not today.

Also, about an hour after the shot my back by my shoulder blades was having a lot of pressure. Almost like someone was sitting on me. Then it would radiate to the front. I read the information that came with the medicine and it said if you have these symptoms to notify the doctor, advice nurse or pharmacist. I e-mailed my doctor but never heard anything back.

My side effects from the shot, except for that, were minimal. I mean, I'm not trying to downplay those symptoms, because they were distressing. If this is what it will always be like when I take the DHE it won't be like I can feel better and resume regular activity in an hour. It took about an hour for my head to feel good and then about 3 hours for the rest of my body to feel good. I took 2 Aleve which helped my back and chest immensely.

I was able to make my dental appointment and go for a short walk. Again, I didn't want to overdo it as I'm really gearing up for tomorrow. Especially with my husband sick now it is very important to me that I feel good to run the kids around tomorrow night. They will accept going along with someone else, but I know that my daughter especially will be disappointed if I am not able to go, and especially if my husband isn't able to go either.

Only time will tell though...

Sunday, October 29, 2006

Perfectly Perfect Day

hang in there mr. snail...

Sunday, Sunday.

I had really wanted to go to church but I woke up and had started my period. For me, this means about a week of really drug resistant horrible headaches. And gauging from Thrs. , Fri., and even Sat., this was exactly what I was dealing with. Really no surprise as I had went off the Levlen (continuous birth control pill for menstrual migraines) on Thursday night.
I have been really looking forward to helping in the kids' school on Tues. for Halloween, and taking them trick-or-treating. So, do I go to church which is really loud w/ lots of people? ...or do I stay home and take it easy?

I decided not to push things and take care of myself.

I went for a walk but shortened it so as not to overdo it. I got about 6 essentials at the grocery store - in & out! I went to Shelley's Mom's for a Mary Kay pedicure (figured that would be low key and relaxing), then came home.

My parents came over in the evening to carve pumpkins which was a blast. We haven't had them over in quite a while. Actually, we never have anyone over anymore. One more loss to the pain....

It is amazing to me to have a perfectly perfect head the whole day, because this is, essentially, my hell week. Hallelujah!

Saturday, October 28, 2006

Saturday, busy day...

Saturday was such a busy day, I was really nervous about if I was going to get through the whole thing because it was the last day of soccer games for max-ay and meyers d. Since my husband coaches our son, and their games were at the same time, I had to take meyers d to her game.

When I woke up in the morning I felt no pain. It's a really sad thing when as soon as you become concious, that you do a body scan (or more accurately, a head scan) to determine if your a 1/4 of the way gone, 1/2 way gone, 100% gone....or perfect. My anxiety was still so high, it felt like I couldn't take very deep breaths. I told my husband that if fear had hands, it was choking me.

One of the things the man talked to me about on the 24 hr. psych. line the night before, was that first thing in the morning I needed to go to Urgent Care and talk to a doctor about how high my anxiety and agitation were. A few years ago I had a medication that I could take when I was pretty funked out and it would get me calmed down long enough for the intensity to pass. Basically it helped me not do anything stupid to myself. I have an underlying bipolar "problem", so it's very important that this issue be addressed, but that whole aspect of me is a completely long story so I'm not going to even try to explain it now.

The clinic got me right in after I told them how high my blood pressure was and how difficult my night was. The doctor was so fantastic that I was shocked. He leaned in when he was listening to me explain what was going on. He totally thought we should address the high blood pressure as it greatly contributes to the migraines and the anxiety. Or, (most likely), the high pain from the migraines causes the high blood pressure and anxiety. Also, my blood pressure was still high, 137/100. He felt we needed to address that because some of the medications used to treat blood pressure are also migraine meds. Interesting, eh?

He noticed in my chart that I had been on a beta blocker before. Propanolol. Long story why I went off that, but it really helped control the migraines. Now that I am on another migraine controlling med., an anti-convulsant and mood stabilizer called Lamictal (anti convulsants are also mood stabilizers and migraine meds...another interesting fact), I felt very confident in trying it again. One of the strange things that happens to me preceeding a migraine, is that I sometimes feel my pulse throbbing really strongly in the large vein in my neck, right below my chin. It actually hurts and is quite painful and within minutes or hours a migraine can start. I have told many doctors numerous times about this problem but it never gets out and out addressed, although I am confident that they have taken note of it.

So, Mr. Quick Care Doctor prescribed Propanolol and Ativan. Ativan is the anti-anxiety med that is just taken when needed and now that my concerns have been addressed (I even got an anti-nausea medicine that is crucial to take before the DHE injection) I know that I can totally have peace and not need it at all, or only in times of great pain or the great pain aftermath.

Meyers D had a fabulous game that I was able to go to (the pulsing in my neck that started in the doctors office subsided within a half and hour of the first beta blocker pill) and then it was off to her party. I wanted to see her get her trophy and fully participate, but going to an indoor amusement place is like the last place a migraneur who just spent the night before in the ER should be. I stuck purple earplugs in my ears and crossed my fingers.

It was crazy insane in that place. There were like two other soccer pizza parties and a birthday party. Everyone could barely move. It was so loud that no one could hear what the coach was saying when he passed out the awards. As soon as he was done I told the hubs that I better leave while I was still feeling good, as the day was only 1/2 over with all the activities we had planned. But I had went, which I know blessed my daughter and for sure was a blessing to me. It makes my husband smile when I can participate because so often we don't know if I'll be able to until a few hours before an event.

After getting home about an hour, it started up again.

Why so many you're wondering? (If your not by now then check your compassion thermometer...) I'll get to that maybe in tomorrow's post.

So this time I took a frovatriptan and within an hour I was feeling better and ready to go to max-ay's ice cream party for soccer. This time I didn't wear earplugs because all my lady friends were there (other soccer mom's) and they all wanted to know how I was doing so we had to catch up.

After the party, Super Star's parents took the kids to their house and the hubs and I went to a Patsy Cline impersonator concert. I didn't really want to go but the hubs likes stuff like that and it seems like I can't participate in things so often. We need to do things as a couple, so I took the purple earplugs and enjoyed a much more toned down show.

All in all a good day, it's hard to believe I could endure such a long, busy day after being in the ER. It probably would have been better if I stayed home and rested, but I'm sure my family feels shortchanged a lot of the time, I know I feel that way, so sometimes I just have to suck it up and plow ahead.

Friday, October 27, 2006

just when i thought things couldn't get worse...


Today turned out to be a lot like yesterday. My day started off great. Woke up with a clear head and after taking the kids to school I went for a long wlak @ the lake again. This time I walked the whole stinkin' thing, about 4 miles. It felt good to be out in the crisp morning air and to feel the tightness in my legs from the exercise. I was feeling pretty emotional though and had to fight back tears.

Also, my mind was filled with worry and fear about the pain returning. I had to force myself to look at the trees, the birds and the ducks....force myself to think about the good things that were happening now, all around me. It was so hard. Within minutes my mind was back to the night before and planning what I would do if my pain came back.

After I returned home, about 1 in the afternoon, I again started to feel pressure in my head. Before the pain could really escalate, I drove to the doctor's office and went to the nurse's treatment center to get an i.v. magnesium sulfate procedure that was a standing order for me. They told me that they didn't give them @ this site, so an RN called around to see where I could go to get it. We discovered that I had to drive an hour to find a place that would do it, but I knew my husband would take me.

When I left home about 6 p.m. my pain was about a 5. By the time I got to the ambulatory care center @ Sunnyside my pain was about 6. I received the treatment and when it was over there was no change in my pain. Also, my blood pressure was 147/107 and the nurse who was attending me said that I needed to get my blood pressure checked again within a couple of days. We drove home and about 20 min. from home my pain was @ an 8 and I vomited. When we pulled into town I started crying and asked my husband to take me to the E.R. I didn't want to go home and just lay there suffering. I was soooo tired of hurting.

Of course the emergency room was busy, it always is, and it was a Friday night. My husband said, "Are you sure you want to stay?" I started crying and said, "I'm not leaving!!!"

I don't know how long we waited, it must have been two hours. I was completely miserable, agitated and full of anxiety when they called me back. I was at the point where all I wanted to do was die. In fact, I would have done anything for someone to just give me something so I could leave the planet. When they called me back to the room I started crying, first because I hurt so bad, and second I was hopeful that my misery would finally be over.

Of course once I got in there it would be at least another 1/2 hour before I got my first medication. Mentally I was really starting to lose it. At one point, I looked @ my husband so desperately and said, "I want to die, please just let me die..."

The first med they gave me in the i.v. calmed me down, the second was an anti-nausea medicine and the third was for the migraine. They also did a CT scan which showed nothing. After I got back to my room the ER doctor said something about me going home. My pain was down to a 5 but I was absolutely petrified to go home and told him that I had hoped my pain would be lower before I went home. He said they could administer the last medication they gave me again. That brought it down to a 2. But I have to say, either my anxiety, or the combination of meds, or both of these combined, caused me to feel completely drugged and very unsettled, like I was just squirming in my skin....it's hard to describe. I think the anti-nausea med was called compazine and the migraine med was seroquil (??) something with an "s" anyways! My blood pressure was still kind of high but lower than it was @ Sunnyside.

The weird thing was, that with this combination I didn't sleep, but I could hardly open my eyes for at least an hour. Very strange... according to my outpatient letter, the ER treated me for acute migraine headache, acute tension-type headache, acute uncontrolled hypertension and acute anxiety reaction.

After I got home (2 a.m.) I tried to go to sleep. I was really fighting some bad thoughts and so anxious about the headache returning. I called the 24 hour psych line and talked to a nice guy who gave me some really good suggestions. One was to follow up w/ a doctor the next day and talk about anti-anxiety medication.

I finally fell asleep about 5:30 a.m. and slept for an hour.

This is a day I hope to never repeat...

Thursday, October 26, 2006

the calm before the storm...

when you say
Today started off as a great day. I went to a counseling appt. that was quite helpful, and then made dinner for my neighbors: baked chicken, spanish rice, homemade creamed corn and coffee cake. I felt great and was able to make time for a walk around the lake before going to the nurse treatment station to learn how to give myself a DHE injection.

While I was walking around the lake I was thinking about the fear I have about the frequency of my headaches and the pain level. I was thinking about the scripture in the Bible that says that the faith of a mustard seed can move mountains. I thought it funny that some Christians, including myself sometimes, criticize ourselves and others for not having lots of faith, for not having the faith of a mountain.

But then some quiet voice inside me said that's the exact opposite of what we are supposed to have. The Bible says it takes the faith of a mustard seed, a tiny little seed. I thought to myself how I feel like my faith has been stripped to an absolute bare minimum, to where there's just a tiny bit left. Sort of like being stripped back to the basics. Yet I know that I have just a tiny bit of faith, a mustard seed. A feeling of satisfaction came over me as I realized that that's all I needed. I felt joy and hope and breathed in the fresh air and soaked up the beautiful colors as golden leaves were blowing out of the sky all around me like rain.

When I was about 3/4 of the way done I felt the first tiny bits of pressure in my right temple. I rubbed some tiger balm on it and continued on. I was a bit sad that another was returning so soon and interrupting my terrific afternoon. As I reached the last intersection before the end of my walk I thought of my Grandmother who passed away a year ago. I thought about how much she cared/cares for me and how sad she would be to see how much I am struggling and I could feel her love for me and compassion for my circumstance.

By the time I reached the doctor's office my pain was increasing steadily to about a 3-4. I was definitely uncomfortable and not able to ignore it. I learned how to give myself the shot and should have taken one right then, but I was hoping to get home and at least get my daughter off to her soccer game and had no idea how quickly the pain was going to progress.

I got home w/in an hour of my appointment and my pain had skyrocketed to an 8. I could only talk in a whisper and it was a burning pain, the kind associated with my menstrual cycle, so I knew that this was the time I needed a DHE shot.

I struggled to concentrate as I prepared the shot as my thinking was so slow. I thought I had done everything right and injected the shot after psyching myself up. Within a 1/2 hour my pain was not improving and I began getting extremely nauseous and vomiting. With this happening, my pain reached a 10 and I laid on the bathroom floor near the toilet wriggling on the floor trying to get some relief.

My husband left our daughter's soccer game and found me on the bathroom floor. He hurried to get our boys ready who were starting to get rambunctious (which makes me want to scream obscenities when I am just wanting to curl up and die!) and we took them to my parent's house. Then he took me to Urgent Care where they gave me an I.V. so I could get benadryl, reglan and another DHE shot. After this series my pain did not improve and I was feeling anxious and like I was going to crawl out of my skin. It was horrible. They gave me a shot of Torredol, put me in a wheelchair and sent me home. This is the quick version. The long version would include an incredibly compassionate nurse who has now I.V.'d me at least three times and is recognizing me as soon as she sees me. I like her but not enough to see her again under circumstances like that!

By the time I get home and settle in for an hour my pain diminishes to a 2 and I top myself off w/ 2 aleve to hopefully get the inflammation down in my brain. I would sleep very soundly....

Wednesday, October 25, 2006

The Diagnosis....



Today I went to my neurology PA to get my diagnosis. I woke up with a headache and had taken something for it. On the way to the appointment the headache subsided a bit. We also stopped @ Starbucks on the way for what would be my last breve latte.

I was very nervous before he came in, hoping that I had given him all the correct information @ our last appt. He began by explaining the neurological processes of a migraine. My aftercare notes state that according to "research done in 1995... a group of cells at the base of the brain, present in all humans, may cause migraines in some people as a result of an increased or unstable firing pattern. This in turn may promote inflammation of blood vessels in the covering of the brain and alterations in blood vessel caliber."

Basically, what he was saying is that migraineurs have "irritable brains" in that the irritability is the inflammation and the tendency towards inflammation that occurs.

Both my husband and I found this information extremely helpful. In subsequent days, I would remind myself of this during some of the most excruciating migraines I have ever had. Instead of thinking that I was just an unlucky person, randomly smited with the misery of migraine, I reminded myself of the information I had learned, and realized that my pain would subside once the inflammation in and around my brain was diminished.

His first issue to address was my menstrual cycle. He said I had "probable menstrual migraines." It was decided that I would discontiue oral, continuous, birth control pills as they did not seem to be helping. According to him, two thirds of people don't receive benefit, while one third do. He let me do the math, and we all agreed that I was in the majority and not the lucky minority.

This was scarey stuff to hear. Because off of the birth control pills, I would revert to the pattern of 4-7 days of my worst migraine pain that was slow, or non-responsive to my usual treatment methods, resulting in a strain on my mental health. Yikes, I was a tad bit freaked out, but at the same time, completely in agreement with the decision.

He suggested that I learn how to self inject DHE, a medication I had received a few times in Urgent Care treatment through I.V. He said to use this for my menstrual type migraines and could be used 2-3 times during that week. (I think that's what he said anyway, that's what's on the bottle...).

Next he addressed the frequency with which I treat migraine and how this causes a rebound pattern. We all agreed that it definitely seemed like that was happening to me, as for the last four weeks I had been dealing with almost daily headaches. And, trying to carry on my normal activities like taking the kids to their soccer practices and games, helping out in the classroom, attending a chronic pain support group and other activities, I was constantly trying (it seemed) to get my pain under control so I could function. I had been trying to vary the medications I used and not use too much of one thing for fear of rebound or the medication becoming ineffective. Unfortunately, it wasn't working out as I had planned.

His suggestion, therefore, was to only treat 2 headaches a week.

Yikes, even on a good week I clearly had 3. This was going to be hard but I understood why he was saying it.

It was decided that my daily migraine med, lamictal, would be increased another 50 mg. and that I would start MigreLief, a product that contains riboflavin, vitamin B2 and feverfew (2x daily), stop drinking caffeinated beverages, discontinue use of excedrine migraine and tylenol and replace it with 2 Aleve with either migraine reversal medication I was using (frovatriptan or DHE).

I may have felt like I was being asked to step off a cliff, but it wasn't without a partially stocked, and well thought out, backpack of survival supplies....

I continued to manage the headache I had gotten in the morning with Tiger Balm and completed a very busy day, too busy I might add. But I was able to attend my last Pain class as well as my son's last soccer game, my other son's end of season pizza party and a harvest party at our church.

Friday, October 20, 2006

A Tangled Web...


It's long overdue but here's the update on the climara and the levlen.

climara wasn't so hot. in fact i got a rash from it, which to put it delicately, was extremely unpleasant. i think this is the first medication i am officially allergic to.

when that was over i started the leven. everything went pretty well until around july 15, 2006 when i started spotting everyday. this continued until sept. 24-ish, 2006. definitely not in my top 5 of pleasurable experiences but all in all, could have been worse.

around the first of august i was on 2 weeks of estrogen to try to balance my cycle out and stop the spotting. the only purpose it served was to help me get totally psycho (this is quite an understatement...so let's leave it @ that!) on the day i stopped taking it.

fortunately i have a patient and forgiving husband who understood that the hormones were whacking out the underlying mood issue i deal with.

i am a lucky wife.

so the spotting stopped late september and that immediately ushered me into the october from hell. more often than not, the entire month, i had a headache/migraine. i tried to function as best i could and not take too many medications or take the same one consequtively for fear of rebound/lack of efficacy. unfortunately i am pretty well convinced i entered a rebound cycle.

so did the levlen help? evidentally, it appears not....so now i entered the tangled web of menstrual cycles and will hold on for dear life as we enter the twilight zone of pain that accompanies the dreaded period....