My Chronicle of a two week battle.

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John Snellings
Posts: 9
Joined: Mon Oct 18, 2004 1:44 pm
Location: Norman, Ok

My Chronicle of a two week battle.

Postby John Snellings » Mon Oct 18, 2004 10:22 pm

Although long, this is my journey through hell.

The Monster Within

Four twenty in the am, been tossing all night. My arms and legs are the worse with the left side predominately effected. A lot of people may say "I toss and turn, what makes you any different from any other insomniac?" The difference my friend is the monster within. Something so sinister that control of the monster is to control you. The monster inside effects your entire being, leaving nothing but an empty shell.

Musical Drugs

There's a lot of good drugs out that are abused. I point that out because the couple of meds that worked for me are so controlled, they are a nightmare to obtain. In some ways I understand the control, after all, some do abuse them. Morphine and Lortab were the meds that worked the best for me, they were my life blood, I could not function without one or the other. Isn't Morphine a little strong some said. I tend to agree, however, after 5 years on the same drug, your body builds tolerance, your symptoms re-appear, so, you take more of the current drug you are on.

My doc suggested the Morphine in conjunction with the Lortab. Consequently, I reduced the amount of Lortab by three quarters using 7.5mg of Morphine nightly. That treatment worked well for three years. Then, to my horror, the HMO I was on fired the clinic my doc was at. I freaked out since I knew I would have to explain all over again that I don't have sleep apnea. Still freaked out, I tried to be optimistic there was more than one good doc out there.

Now here is where the musical drugs part enters the equation. By musical drugs, I mean like musical chairs to the sound of pop goes the weasle. I really think this next doc had a dart board in his office with meds and played pot luck with my life. I call him Mr. Warts. I left the doctor off intentionally, in my opinion, he doesn't deserve the title.

After sitting in his little cell-----uh I mean exam room for 52 minutes, Mr. Warts comes strolling in. He sit's down, ask my problem, then stands up and walks out in the middle of my explanation. Well, I sat there perplexed, I mean, I'm no doctor, mayber he was overcome with emotion due to my suffering. Nope, about ten minutes later, he strolls back in proudly waving a download off a medical site. He ask me what drugs I had taken. In the middle of my report, he interupts and says "Lets try Mirapex, thats new and supposed to work." Here again, I'm no doctor, so reluctantly I said ok. He said "Make another appointment in 30 days." I thought to myself, geez I hope this works-----thirty days, man.

Well, you guessed it. The Mirapex didn't worked. In fact I had a bad reaction to the drug. Consequently, I suffered until the next appointment. Again, 48 minutes in the "exam room" he strolls in. "How the Mirapex work for ya?" I looked at him and said, didn't you get my message? I had a terrible reaction. I called your nurse, she was going to tell you. Well folks, do you know what a blank stare looks like----well theres your sign. He didn't say much, however, his blank stare said; How dare that drug not work on you, it works on everybody! It says so on the internet! Then Mr. Warts tells me it's trial and error time and that I probably know more about the affliction than he does. Boy, now I really trust this guy! Not!

Now, picture in your head, someone through about six different meds in two months. Play pop goes the wealse as you speed the pill popping over
each night. Now to be fair, Mr. Warts states in the above last appointment, "Now John if you have any trouble and these don' work be sure and call me ok." I was tearing up at this first sign of empathy! Could Mr. Warts actually care about my well being? Even if I am on an HMO? I was beside myself.

So, after a few weeks I determined the Trazedone made my brain tired but did nothing for my legs and arms. The other drugs which were predominately for Parkinson's were useless. No problem though, he said call him anytime. So, I called the nurse, explained the meds weren't working and that I was following his instructions to call for special treatment. Well, three weeks later, still no call. My next appointment had came and went. Before that, I had already fired him in my mind, I just didn't tell them so some other poor soul would get the slot. Turns out. they didn't even miss me. I feel sorry for the person who got my slot.

Now, you can imagine what sleep deprived individual would do in a case like this right. Wrong! Instead of using the meds that helped so much, I decided to go cold turkey off everything. Hey maybe the monster is gone, hell it's been years, maybe the monsters gone---maybe I can be free, drug free. No more worrying about those refills or doctors "not in the office today", no more knowing my pharmicist by his first name and no more hey are you a druggy looks. It's settled then I said to myself with all the confidence of George W. I'll go cold turkey!

Hell on Earth
Two week battle

I guess it's time to admit that most of the time I wrote about my battle I sobbed uncontrollably. The feeling of being alone, the desperate need to be cured when there is no cure, the craving for hope thats never realized. I know, it's my bed I made it------cold turkey.

I explain the next in hours because there were no days and nights, just hours. After 24 hours of no meds I can say my worst enemy is time. Time moves so slow---it's maddening! Time almost moves backwards. My flu like symptoms are getting worse as expected. I spend a lot of time by the bathroom--------and not to throw up either. It's hard to sit still, I find myself walking around the house with a blanket over my head counting the steps. By the way, there are 68 steps between my kitchen and living room if you go in a circle.

Forty-eight hours in, it's hard to keep a thought in my head. I've snapped at the dog, which I love tremendously, and barely noticed my beautiful wife is extreemly worried about me. All I can do is snap at her, or ignore her---and I love her unconditionally! A video game keeps my attention for about five minutes, thens it's up walking the floor, taking those 68 steps hours on end. I even ventured outside, blanket, underware and all, it was three am. At the time I didn't care what time it was. In retrospect though, thank God it was dark.

72 hours passed, it's my birthday. No way of getting out of the party and I'm dreading every minute of my life. I had a master stroke. I'll get drunk! Well, that only worked for a while and it's totally impracticle. I ended up laying in the booth at the sports bar. Thank God my good friend owned the place or I would have been tossed out. I think most of my friends knew what was going on. I didn't really care, however, my wife unfortunately did all the caring. God bless that woman, I am nothing without her.

96 hours, no thought stays in my head for more than a fleeting minute. I feel like one of those people you see on tv playing a crazy person, rocking back and forth to a rhythm, not looking up or ahead, just down. The bed is a sick joke to me, I won't even lay in it. As I watch my wife sleep I feel as If sleep is the moon and I am the Russians, just never going to get there. I can't even surf the net for how long this will last because I can't focus to type. I keep asking myself, why is this getting worse instead of better? Shouldn't at least some of the withdrawal symptoms be receding? Unfortunately, in my sleep deprived state I forgot one important fact-----------The monster is still present and refuses to let go!

120 hours later I feel as if my resolve is no more. I did have one, now that I look back at it, comical attempt to take control of my body. It went something like me talking in an audible voice like General Tommy Franks would sound, it went like this:

OK body listen up!
Brain, you take control.
Skin and legs listen to the brain, he's there to help you.
You, body as a whole! Work together for the better of all!
If you feel the urge to move, the brain really means sleep.
Remember, this is our secret code! Move really means sleepy time!
If all else fails and the enemy prevails, shut down all systems into sleep.
NOW MOVE OUT!

Man was I looped. Even after 144 hours of no sleep I thought the above was insane behaivior. I finally broke down and called my new primary care doctor. Sobbing uncontrollably I explained all about how Mr. Warts made me feel like a drug addict and how he refused to call me back and how I decided to go cold turkey. I told him how sorry I was to be such a difficult case however, I couldn't continue in this manner. I basically begged for help of any kind, it was the lowes time of my life and I 'll never forget it.

The doc was extreemly compasionate. He stated he didn't know what to do however, what he would do is put me back on the Lortab. He asked me if I was considering suicide, I said no not really. I begged not to be back on the narcotic. I guess I had come so far I didn't want to go back to square one. But good old country doc that he is plainly stated "I know son, but its all we can do for now, you can' live like this. I'd rather see you on Lortab than suffer like this. If you have any thoughts of suicide, you call me anytime." His compassion for me was overwhelming, even in my state of mind.

With my prescription in hand I felt a new power over the monster. Maybe just having the drug will give the boost I need to mentally overcome. This is a masterstroke! I felt a new sense about me, a sense of hope. Unfortunately, in my sleep deprived state the hope was only a mirage. To my horror, the worst was yet to come.

Two days since the script was filled, still no relief in sight. Instead of withdrawal symptoms getting better, they are getting worse. On outward appearance I look like a wildman, mouth open to breath, unshaven, inability to acknowledge someones presence. If I had only figured out sooner that it wasn't the detox that was getting worse, it was the monster, the scourge of the earth, the demon inside me, then maybe I would have given in sooner. I guess, or should I say I know, God works in mysterious ways. Because when I am the lowest of the low, the end of my end and there in my mind is no other avenue except the ultimate rest----------------my cell phone rings.

" Hey bud whats up." DAD! "Johnny, whats wrong, are you alright?"
No, sobbing uncontrollably. I explained to him the best I could that I was in a war with what I felt was control of my life, and that I had lost that war. I failed, no hope for freedom. ----Now, it just so happens my Dad is a doctor, and has worked in the drug and alchohol business his entire life. Why I had fail to call him sooner shows how messed up my thinking was. He said "Johnny, you failed to remember one important fact, you have a problem, and that problem has gotten worse, masked by the drugs you hate so much." His words were so soothing to me. He said take the meds like your doctor said. "Thats good advice Johnny." He called my everyday to check on me after that.

After taking the drugs I slept for 7 hours, something I haven't done in years. My body was battered and beaten down and needed rest, thank God I gave in. Maybe I came to the conclusion that I am forced to take a "Taboo" drug. I can't help that, in my case it's necessary. I need to leave the guilt at the doorstep.

Arrogance of the Learned

As days passed and the monster was put back in his cave, one thought came back to me over and over again. It wasn't sorry to say what I had put my wife and dog through or myself. The main theme was the appalling lack of empathy, the arrogance, the over the phone diagnosis, the unwillingness to understand the severity of a persons pain. This, all from those we are taught to respect and intrust our lives to. I can understand a physicians wariness in this sue happy world, however, those in the medical field need to realize when and where the need of a patients suffering overcomes the fear of retribution. Now these physicians I refer to are not alleged to be typical, just my experience. I am definately willing to meet a doctor who is committed to finding a solution, with no bias in my heart. I know there are good compassionate docs out there. I just missed them.

Another thought was the long drawn out time between exams. The "lets wait and see if this one works attitude" is rampant. What is the treatment fails to work in one week. Should one be required to suffer the following 4 to 8 weeks waiting for the next appointment. Thats dangerous isn't it? Maybe if the physician had to be along side the sufferer, he would see the damage sleep deprivation does. Then maybe a special appointment could be arranged, even if over the phone consultation. One doctor on the RLS.ORG site refused to see me because I was a tuff case. He stated I probably had sleep apnea. Needless to say me and my Primary care were furious. How can he over the phone diagnose in that way. It boggles the mind, the arrogance that some portray.

Hope Abounds

Reflecting on my journey makes me more determined to spread the word about Restless Legs Syndrome. I am 46 years old, healthy, adult with a fairly no stress life where everything else is concerned. I am not a junkie waiting for my next fix. I hate the fact that I am chained to any drug, however, I have excepted that for now and am ok with it.

Sleep deprivation is serious. Looking back, I have to admit that I may have pondered ways to get some peace. Because, sleep deprivation effects the brain as much as the body---even more. I thank God for my Dad and that phone call. I know God is there and prayers are answered, sometimes the answer is no. For me or anyone else to question fate is a waste of time, time that can be better spent enjoying what good is in your life.

I have hope and need hope to continue in life. I feel as anyone may when faced with his or her own mortality-----hope makes the days pass. Without hope life is useless, just a series of movements from one point to the next. I thank God for hope----hope abounds! I think as Christians we sometimes question God as to why we are suffering. Then, as for me, I stop and come to the realization that---------------------it rains on everybody------------dosen't it.

Godspeed in your journey with Restless Legs.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Take a breath

Postby becat » Mon Oct 18, 2004 11:08 pm

Well John, I had to take a very deep breath............WOW, and look your still here. Your a better man for helping us spread the word.
RLS is not the prettiest, the most popular, it probably will never make it to the front cover of most publications. But it's ours and WE WILL BE THE ONES TO CHANGES IT"S PATH..................
I like your guts man. Your braver than I am, I still kept my gatekeeper, even though he is not my partner. Sadly he has no idea who we've all become here. Many of us believe that we have the power to change the way this disorder is diagnosised and treated. Why? Because we hire them (the doctors), we employ them. We are the labs in which their work is either proven or not. It is our money that goes to pay for the medications, our doctor's visits, and alternative medications and treatments. I for one have a choice to take what they give me or not. I have a choice to except the treatment or not. I don't care to wait on THEM to approve my methods, because they do not have live in this body. I don't mind stepping on a few toes, as long as the common good is a path we share. Not everyone shares my opinions on this subject........but I can't take it anymore. Sitting nicely and waiting for someone to throw me a bone AINT' HAPPENIN'! I'm with ya, Let make some noise.
I told you earlier today. The docs do know sleep deprivation, it's a well known part of their training...........but at some point that is a thing of the past for them. Private practice or a group, they take turns for "on-call" night. We, that don't sleep, are always on call. Rest evades our bodies and minds. I OFTEN HAVE THOUGHT IN THE LAST 8-9 YEARS THAT MY BODY WILL NOT CARRY TO FAR IN THIS LIFE. I'm not a suicide kind of gal, just my body will fail me. I decided this was RLS HOPELESSNESS, nothing was ever going to change and it wasn't going to get better.
John, I'm still here..........I have no plans to go anywhere soon. I'm going to do my best to spread the word, the work we do here. It's great to hear you have power again.
I hate the looks and knowing the pharmacist as well as I do. BUT I'm here and doing better than I have in ten years. I too, pray that this time will last long enough to make a difference in my body. There is hope John, it's in you and I, and all the people here.
It's a plus to have you on our team. Glad your here now. You'll find a new breath for sure. Helping people along the way.

User avatar
jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

John - Amazing!

Postby jan3213 » Tue Oct 19, 2004 12:46 am

John, that was amazing!!! I could feel everything you went through. How can I say this without making it just about me? I think because RLS happens to most of us, usually at night when everyone else is asleep and the house is quiet and at rest, and our bodies are in their own private war, sometimes it feels like we're alone. But, we're not! There are millions of sufferers out there just like you, John, you, Becat, and me, and many others, and it makes me so mad that too many people in positions to help us don't take what you so eloquently have stated, John, seriously enough to do something about it! I've said before, I couldn't go "cold turkey"--I'm not as brave as you are, John. To know how many steps there are between your kitchen and living room---I've walked and walked, but never counted the steps. I could feel your agony. I'm not as quiet in my suffering as I used to be. Maybe it's because of a lot of reasons, I don't know. I used to think if you just kept still and didn't say anything, it would be better. I hardly ever took an asprin, hardly every went to the doctor, never took a sick day. When I took early retirement, I was able to claim over 90 sick days because I never used them. That was just 1 1/2 years ago. Now, I couldn't do that. I'm not the same ME I was then and that was such a short time ago. I know I've complained a lot on this forum and I'm not apologizing anymore. I'm a Christian, too, John. I know God answers prayers and I know that sometimes He says "no" and I believe, because He sees the big picture, He has a reason for doing so. I still don't say "why me". I worked with a woman who had MS and I'm so grateful that I don't have MS. But RLS is still not a picnic. Sleep deprivation can do so much more harm than many people realize. It's dangerous. I don't like falling to sleep in the middle of dinner at a restaurant or being embarassed because I'm not able to sit through a movie in a theater either because of crazy legs or because I go to sleep. And, driving, well that's another matter entirely. And, I know what I have and how I act has an impact on what friends I may or MAY NOT have anymore. Actually, I'm falling asleep as I'm typing this right now, but you can bet your booties when I go to bed tonight, after taking my meds at the proper time, I'll be tossing and turning, walking the floor, or whatever. John, I'm so glad you found us. You're helping me because, to tell you the truth, I had decided not to post anymore after today, but, by gosh, I'm not going to quit because, like it or not, I'm going to fight. I don't care what anyone thinks of me or what goofy thing I might say--I just want this stupid syndrome, disease, disorder, whatever you want to call it, to get the recognition it should by the scientific community so that future generations won't have to suffer. It may not help any of us, but maybe it will help someone!!! I think Becat said that she would love to know that any grandchildren she might have would be free of the fear of having it--I feel the very same way--not just mine (I know she feels the same way), but all children. I know she had it as a child, I don't know if I did or not, but it's no way to live. I wish I had the money to go to California. The rest of you are probably glad I don't. Ha! In the meantime, John, I hope you find some rest. You, too, Becat. Please excuse the long post. God bless you both.

Jan
No one is alone who had friends.

Terri

Medicaton

Postby Terri » Tue Oct 19, 2004 4:04 pm

Well, I had found something that was working for me. . .guess what? They stopped making it. Yep, just like that. No warning from anybody. Went to get my prescription renewed and "Oh by the way, they don't make this anymore." So, now what? Yep another new drug, new side effects and wondering if it will even work. I feel everything you are going through, I'm hoping I am not in for the two weeks from hell.

I was on Requip. . .now he wants me to try Mirapex. I see it didn't work for you.

Good God I dread the next few weeks.

:cry:


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