New drugs and old school drugs!

I'm taking an old school sleeping med, the name fails me right now, but it has helped so far. Of course, it isn't covered by my insurance since it's not a huge money making "as seen on tv" drug. There aren't any butterflies landing on me if ya know what I mean...

My newest addition in the fight for pain control is Topamax. I've been on a low dose for a total of 2 nights with no evil side effects, which is a good sign. I haven't noticed any improvements in pain, but I have room to move with the dosage, so that might be the next step in a few days. As long as the room isn't spinning, my head is clear, and I can keep my feet on the floor then I'll keep trying the drug.

SSD Review Update:

Just a few days until the (unnecessary, IMO) SSD mental status examination. I received a reminder letter today that says I have to bring the letter and all my medications in the original bottles. Guess I better pull out a piece of luggage to haul all my loot!

Can I Keep My Sh*t Together For This Visit?

Another doctor, my Primary Care Physician, has requested I come in for a check-up. I haven't seen him in 2 years, but we talk all the time through e-mail. (My rheumy is the doc I see the most in person.) He, my PCP, is also the one who set me up as a guinea pig for the infamous "no risk" pain treatment. I have a lot of respect for this doctor and I don't blame him for what happened to me on Halloween night. I think he truly felt I would benefit and was as shocked as I was at my body's response. Anyway, that's all in the past now.

Moving on...

The Lyrica was a bomb. That drug made me feel terrible, like I had partied all night and had the hangover from hell. You know the one where you swear to God that you'll never ever drink again if he can just make the room stop spinning. And oh how people's voices just cut right through me. I just wanted everyone to shut the hell up. The vacuum about sent me crawling on the ceiling. Worse then nails on a chalkboard any day. This lasted about 48 hours and then it was like I went into a withdrawal after only 2 days of this evil drug. I felt like I had been hit by a Mack truck. My head hurt, I was feverish, had chills, and oh so dizzy. I was thrilled when that stopped and I was left with what I have now.

I've had a sore throat for a few days, I'm more tired then my usual tired, I have cold sweats, and I can't sleep. This is bad, but nowhere near the hell caused by the Lyrica. Evil, evil drug. Oh yeah, did I mention that it didn't even touch my pain!?! What a waste.

So, to the doc I go tomorrow to see what brilliant things he has to say. Remember, this is the dude who diagnosed my Myositis within a matter days! AMAZING MAN. People go for years and run around to many docs to finally get a diagnosis. My Mr. McSmarty-Pants pulled it off in less then a week. Oh yeah, he's that good.

Frustrated & Tired

For the first time, in a very long time, I lost it in the doctor's office. I bawled my eyes out trying to explain how I've been feeling. All this emotion, that I keep inside, just came spilling out. I even cried after I left the office because I'm just so tired and frustrated with being sick. It just plain sucks and I feel like no one truly understands what it's like to be in my body (except those I've found on the fibro and myo bb's). I should probably talk more about how I feel with those around me, but that's just not my style. I have a hard time verbalizing what I'm feeling. I can write it, sometimes, but I can't always say it out loud.

Anyway, I'm trying a new (to me) pain med called Lyrica and stopping the muscle relaxers. I've tried the relaxers long enough and can honestly say they don't do enough to justify taking them. I'll give this new med a try and I'm increasing my Darvocet intake. I'm going to try and keep the level of Darvocet in my system consistent, even if it makes me tired, to try and get through this pain flair. I guess now it's just about patience and time...the freaking story of my life.

I'm not sure if I've posted this before, but here it is, possibly for an encore:

THINGS MYOSITIS PATIENTS WOULD LIKE TO TELL AN UNINFORMED DOCTOR ABOUT MYOSITIS:

SYMPTOMS:
. There is pain with myositis.
. All patients are different and can have different symptoms with the same disease.
. Typical physical weakness results in a) difficulty swallowing, b) trouble getting up from chairs, c) falling, d) climbing stairs, and e) getting out of bed.
. Dermatomyositis patients have skin involvement and sensitivity to the sun.
. Patients perspire when others around them do not.
. Many myositis patients suffer from extreme fatigue. This occurs even without any exertion.
. There are many different degrees of illness with myositis from mild to extremely severe.

DIAGNOSIS:
. Myositis patients might have a negative muscle biopsy, even when two are taken at the same time in different sites.
. The CK level is not always positive in myositis patients.
. Never accuse a patient of being a hypochondriac just because you can't find a diagnosis.
. Older patients can have myositis and all aches, pains, and bouts of clumsiness are not caused by getting old.
. The aldolase might be a better indicator of inflammation than the CK level.
. Myositis patients with elevated CK levels probably will have elevated CKMB levels also. This does not always mean cardiac involvement. Order additional testing such as a troponin to be sure.
. Myositis patients frequently have other autoimmune diseases. Their varying symptoms are real.
. Patient may have strength; but no endurance, e.g. may be able to lift heavy objects but can only hold it for a few seconds.

TREATMENT:
. Patients react differently to medicines used in treating myositis. The same medicine might put one patient into remission and send another patient to intensive care.
. Tapering of prednisone needs to be keyed to the individual patient.
. Myositis patients look normal; but still can be very ill.
. Pain and flares are not always directly correlated with the CK level.
. Myositis is a chronic disease. You might get the patient into remission; but you are not going to cure them. While not curable, myositis is very treatable.
. Treatment should be based on how the patient feels, not solely on blood test results.
. It sometimes takes a long time to get the right combination and dosage of medicine to be effective.

LIVING WITH MYOSITIS:
. Myositis sufferers frequently cannot return to work and are truly disabled.
. Myositis affects the entire family unit. Prepare the patient for this.
. Include the spouse when possible in treatment plans, etc.
. Myositis patients need a handicap parking sticker.
. Myositis is a lonely disease and patients need a support group. These are usually on the internet because the disease is rare and there may not be other myositis patients in the same area.
. Myositis patients are frequently frustrated and perhaps clinically depressed.
. Myositis patients are extremely friendly, helpful, understanding, and loving to others who share their diseases.
. Family and friends will not understand why you are unable to participate in family event due to pain and weakness.
. Life with myositis will necessitate changes is lifestyle. Myositis patients may never mountains climb again.

PERSONAL PHYSICIAN SUPPORT:
. Treat the patient, not the disease.
. Life threatening complications can kill. Annoying symptoms can hurt. Myositis patients suffer from both. Doctors should treat all.
. Be open to all options of treatment. It does matter that you care and search for an answer.
. The physician should be up to date on all medicines being prescribed.
Listen to patients when they feel they are having adverse reactions to medications.
. Give the patient some indication that you give a DAMN.

I was in bed early last night when my Dad said my doctor was on the phone. My PCP had been out last week and was following up regarding my ER visit. I think he felt bad that he was the one who suggested the study and promised no risk at the time. Well, leave it to me to have the unusual and uncommon response. He said the machine tech had gone so far as to speak to a Neuro doc regarding my reaction. Apparently, what happened hasn't happened to anyone else AND they have even used this machine to help people with migraines! I honestly think the combination of my Myo and Fibro just set me up for problems. So, my PCP and I agreed I'm done with this experiment.

Halloween Night or, as I would like to call it, The Night I Thought My Head Was Going To Explode!

About 5:10 or 5:15pm, minutes after I finished the previous post and 4 hours after my pain treatment, my head started pounding. It came on fast and hard -- a migraine for sure. I took an Imitrex and rested in the dark. About 5:45, I was in the kitchen talking to my Mom when I started to feel really nauseous. I moved to the couch and laid down. I lasted a few minutes there, but my head was pounding so hard that I just wanted two things: dark and quiet. I went back in my room. My headache was getting worse, so I took my second Imitrex.

My sister brought my nieces over after trick or treating - I have no idea what time it was, but it couldn't have been later then 7 or so. I walked out in the hallway to see their costumes and then went right back in my bedroom. At this point, I was in my own private hell. I had kept myself calm up to this point and tried not to cry, but I had reached my limit. I headed out into our Great Room, bawling my eyes out, and plopped down on the couch. I announced that I couldn't take it anymore and would someone please take me to the hospital. There was a little commotion and debate about who was taking me. (Mom ended up driving me, Dad showed up right after, and my sister took the girls home -- way to spoil Halloween!) I sat on the couch and Mariah brought me my fuzzy slippers. They both kept saying, "It's going to be okay." I went to my room to get a sweatshirt and sat on my bed. Jada put her hand on my shoulder and said, "T, you will be okay. We love you."

On the road...

We hit every freaking red light. The drive was a nightmare. I was just holding my head, snot dripping out of my nose (nice image), and clenching my jaw so hard my teeth probably would have cracked if I hadn't put in my bite guard. We finally made it to the hospital and thankfully the ER was pretty quiet.

To sum the ER visit up...

After taking my history, they gave me fluids and a migraine cocktail which consisted of an anti-histamine, a pain killer, and something for naseua. I had this same treatment 8 years ago with a migraine that was just as bad. They wanted to get a CT scan, just to be sure nothing was going on because this wasn't my typical migraine. It was on a different side and was far more intense then usual. A spinal tap was mentioned, but my Mom and I discussed skipping that. I've had that done and it's not fun, plus I was pretty certain I didn't have Meningitis since the drugs started working very quickly. The CT scan sucked (spinal was never brought up again). I couldn't hold still because my muscles were restless and then I had to take all my earrings out. It took a little time but they finally got a good picture. I went back to my little ER room and by then the drugs were totally working and I was ready to skip out of there. My muscles were so jumpy though that I couldn't sit still on the bed. I was up and down like some little hyperactive kid. What was worse was that I was tethered to that damn IV. I so wanted to be one of those people who could just say to hell with it, pull out the IV, and storm out AMA (Against Medical Advice). Of course, I didn't. I suffered the restlessness and made a few trips to the bathroom just so I could move about. FINALLY, CT came back normal and I was released.

Once I was home I took a hot shower and tried to go to bed. My muscles were wrecked and it took me a long time to get calmed down. I finally passed out in the early morning hours.

So, did the experimental pain treatment bring on the migraine? Everyone seems to think so, from the ER doctors to my family, including me. Apparently, the deep muscle stimulation went a little too far and irritated the hell out of me. Will I participate in the treatment again? Nope, not a chance in hell.

I've felt so tired and beat up since this happened. I haven't been able to sleep at night, even with my sleeping pills, and I'm exhausted. I did very little this week/weekend and when I did I was really pushing myself. I'm sure I bored the hell out of my bf -- so sorry Rob. It was like I was glued to my mattress at times. My back and neck hurt a lot more then usual. Maybe those little suction cups were actually sucking the life out of me??? LOL - that would just be my luck.