Morning Jumpy,
Can't wait to hear your story.
So glad to hear that Gloria is doing better. I'm sure it's all been a trip for you.
Miss you. Love you.
Hugs to you.
RLS AND DEPRESSION
Once upon a time...
Well, here goes the story! AFTER TAKING MY DAUGHTER TO THE EMERGENCY FOR THE THIRD TIME and having her abused there also for the third time, I had another one of my brain storms (at this time she actually passed out, then stopped breathing so I had to apply mouth to mouth rescucitation until the EMC showed up - they got lost - while the lady on the phone kept asking: does she have a pulse?, I can't take it, I am too busy keeping her breathing!, but does she have a pulse???, she is breathing!! but does she have a pulse??? Finally I hung up on her!
I could hear some bubbling on the left lower part of her lung and X-ray later confirmed that she actually inhaled some food a day or two before and had some local inflammation there. Anyway, the nurses looked at her urine result and found traces of morphine (which she takes regularly) and instead of checking her whole record again, freaked out). They ignored her. She was there without water, or food or medication from noon til 10 p.m., I talked to the night nurse when she will be taken to her room, "well I am busy, perhaps in the morning, she is an addict, you know!. I took her out of that torture chamber within 5 minutes, she was in severe pain, it was brightly lit, and also served as a store room, everyone walked through it except the nurse in charge of it.
I figured out she may not survive the next episode . I also had this brain strom why she might be having these heart episodes in top of her pain. Being a quiet person she has not been complaining but was probably suffering from intense depression and anxiety which can cause both pain and cardiac problems. So I wanted her to voluntarily comit herself to an psychiatric evaluation (5-7 days) in a hospital. She was scared to death of the idea. To make sure she survives the experience I also promised to do the same.
We both had to have a cover story. This was not difficult because I was under a lot of stress and the psychiatric ward would take us but we had to pass the first hurdle, the emergency ward of the regular hospital, which pretty much will pass you on if you either have suicidal tendencies or homicidal tendencies. In our case, it was a fine line, because the doctors were ready to accept us but the first day the emergency was so busy that we did not get in even at 10 p.m. So I wanted to try something which was revolutionary to them. Wanted to leave first to eat supper. They looked at me as if I was crazy (Gloria was fading). Then I became a bit braver and said well I might as well stay at a motel and come back in the morning when you are not as busy? They looked at me even stranger!
But could not debate me too well. So we spent the night at a motel. In the meantime they were waiting for as in the ward until 2 o'clock a.m. as I learned later (they never sleep there).
Next morning was quiet, we got in there quickly. Then things got slowed down. They said they are waiting for the emergency vehicle to take us over there one by one and they do not have them free. Then what about my car and our luggage? And we are starving. Oh, I bring you food here. In 5 minutes the food was there. Who is the diabetic? The other person asked I guess I am? I was ready to admit to anything.
Suddenly the tall nurse shows up with an insulin filled innjection needle! Wait a minute I am not really diabetic! Oh, yes you are, you had 1000 mg glucose in the urine and 380 mg/dl glucose in the blood! - What??? I show you!! she brought in a small hand kit! pricked me: result 125 mg/dL. Oh, then it is Gloria! I must have made a mistake! So she turned to Gloria with the needle. Wait a minute . This is not button, button who has got the button? I said. (By that time she was nervous as a kitten.) She measured Gloria, she was 115 mg/dl.
I demanded to see the records. They did not give up easily. I have never got to see the records. I even got to see the administrator who had halitosis and had a very limited mental capacity. By that time everybody was begging him to let us go in my car over there. (they wanted to get rid of us). But it is against regulations... he stammered.
Somewhere here where the term homicidal ideation was circled in my record. It was crossed out about five times vertically, but the other nurse expected only one vertical line, so she duly noted that I have homicidal tendencies. Nobody noticed the error except me when I was checking out a week later and then tracked it down.
Gloria and I spent a week in two different units. She looked at me broken hearted when were separated but luckily she was treated much better than in the emergency rooms and she actually enjoyed the experience. So did I meeting with many interesting people.
The only bad thing that happened was when they misdiagnosed me with bipolar disorder with psychotic overtones and prescribed the antipsychotic drug Geodon. I took half a dose and 90 minutes later it hit me. They only gave me the patient information sheet which was useless. Even though the doctor assured me that the drug has almost no side effect that turned out to be not true for me.
This is a relatively new antipsychotic drug that calms down even violent psychotic patients. It blocks all the D reception sites at the nerve conections (D1, D2, D3) removing all the dopamine agonist that are there. So I first had the side effects: facial muscle paralysis, slurried speech, loss of coordination, disorientation, staggered walk, blood pressures shooting through the roof. (I asked them to measure the vitals). Unfortunately, my daughter was there for the first time being allowed to visit me. She thought that I had a stroke. Luckily she had to leave soon after.
Then the strongest RLS attack ever hit me, no dopamine you see. And I could not walk except like a drunkard from wall to wall, two nurses finally grabbed me on both sides to take me to my bed. This was at 4 pm. my next dose of mirapex was due the earliest at 8 pm.. That was a hellish other four hours. I could not even argue well. What was a little help that I remembered that hydrocodone helps. Turned out that it was prescribed for me and I did not take it in the morning. So they gave it to me at 6 p.m. and that helped a little. But what I needed was Mirapex.
Taking Mirapex, hydrocodon, ativan, and temazepam that night assured me sleep, next day geodon was changed (upon my request, to Topamax, they gave me four choices of mood stabilizers) , but at a higher dose. I am up to 100 mg a day of topamax
I had my meeting with the medical; board of the unit facing five people. The doctor with whom I talked possibly 15 minutes altogether told me the diagnosis and asked me whether I agreed with it. I said: No (with the tone, like Hell, no). Then he smiled and told me his qualifications and said "even I would not attempt to medicate myself." I restrained myself stating that it is probably a good thing in view of the geodon event. Later turned out that he was not even notified of the event as he was not on call.
It was another doctor who actually advised me that I should stop taking Mirapex because that was the cause of the whole thing!!! Duh!!!
I actually tried to explain to him about the RLS and the need to take Mirapex. he said that even though I was taking Mirapex beneficially it was building up gradually and Gedeon was just the little nudge that was needed to push the whole thing over. Luckily the my own doctor relented and let me choose the other medication.
My own doctor also sent me to attend a support group of bipolar patients and that very interesting. he was supposed to but could not attend and they were rather bashful but I managed to ask some questions and stir things up a little. There were some scary stories, I tell you. I do not really think I have this disorder. The only thing my doctor could bring up as a suspicious symptom is that I speak fast (I was worried about Gloria whom I could not see for the first two days).
The story turned out well for Gloria who became much better during her stay at the hospital. Now we know what to do, thank God for the insights.
I do not care what they call me! And this whole story I believe has lots of revelance to my fellow RLS sufferers.
Thanks becat for the lovely words of encouragement and comradeship!
I could hear some bubbling on the left lower part of her lung and X-ray later confirmed that she actually inhaled some food a day or two before and had some local inflammation there. Anyway, the nurses looked at her urine result and found traces of morphine (which she takes regularly) and instead of checking her whole record again, freaked out). They ignored her. She was there without water, or food or medication from noon til 10 p.m., I talked to the night nurse when she will be taken to her room, "well I am busy, perhaps in the morning, she is an addict, you know!. I took her out of that torture chamber within 5 minutes, she was in severe pain, it was brightly lit, and also served as a store room, everyone walked through it except the nurse in charge of it.
I figured out she may not survive the next episode . I also had this brain strom why she might be having these heart episodes in top of her pain. Being a quiet person she has not been complaining but was probably suffering from intense depression and anxiety which can cause both pain and cardiac problems. So I wanted her to voluntarily comit herself to an psychiatric evaluation (5-7 days) in a hospital. She was scared to death of the idea. To make sure she survives the experience I also promised to do the same.
We both had to have a cover story. This was not difficult because I was under a lot of stress and the psychiatric ward would take us but we had to pass the first hurdle, the emergency ward of the regular hospital, which pretty much will pass you on if you either have suicidal tendencies or homicidal tendencies. In our case, it was a fine line, because the doctors were ready to accept us but the first day the emergency was so busy that we did not get in even at 10 p.m. So I wanted to try something which was revolutionary to them. Wanted to leave first to eat supper. They looked at me as if I was crazy (Gloria was fading). Then I became a bit braver and said well I might as well stay at a motel and come back in the morning when you are not as busy? They looked at me even stranger!
But could not debate me too well. So we spent the night at a motel. In the meantime they were waiting for as in the ward until 2 o'clock a.m. as I learned later (they never sleep there).
Next morning was quiet, we got in there quickly. Then things got slowed down. They said they are waiting for the emergency vehicle to take us over there one by one and they do not have them free. Then what about my car and our luggage? And we are starving. Oh, I bring you food here. In 5 minutes the food was there. Who is the diabetic? The other person asked I guess I am? I was ready to admit to anything.
Suddenly the tall nurse shows up with an insulin filled innjection needle! Wait a minute I am not really diabetic! Oh, yes you are, you had 1000 mg glucose in the urine and 380 mg/dl glucose in the blood! - What??? I show you!! she brought in a small hand kit! pricked me: result 125 mg/dL. Oh, then it is Gloria! I must have made a mistake! So she turned to Gloria with the needle. Wait a minute . This is not button, button who has got the button? I said. (By that time she was nervous as a kitten.) She measured Gloria, she was 115 mg/dl.
I demanded to see the records. They did not give up easily. I have never got to see the records. I even got to see the administrator who had halitosis and had a very limited mental capacity. By that time everybody was begging him to let us go in my car over there. (they wanted to get rid of us). But it is against regulations... he stammered.
Somewhere here where the term homicidal ideation was circled in my record. It was crossed out about five times vertically, but the other nurse expected only one vertical line, so she duly noted that I have homicidal tendencies. Nobody noticed the error except me when I was checking out a week later and then tracked it down.
Gloria and I spent a week in two different units. She looked at me broken hearted when were separated but luckily she was treated much better than in the emergency rooms and she actually enjoyed the experience. So did I meeting with many interesting people.
The only bad thing that happened was when they misdiagnosed me with bipolar disorder with psychotic overtones and prescribed the antipsychotic drug Geodon. I took half a dose and 90 minutes later it hit me. They only gave me the patient information sheet which was useless. Even though the doctor assured me that the drug has almost no side effect that turned out to be not true for me.
This is a relatively new antipsychotic drug that calms down even violent psychotic patients. It blocks all the D reception sites at the nerve conections (D1, D2, D3) removing all the dopamine agonist that are there. So I first had the side effects: facial muscle paralysis, slurried speech, loss of coordination, disorientation, staggered walk, blood pressures shooting through the roof. (I asked them to measure the vitals). Unfortunately, my daughter was there for the first time being allowed to visit me. She thought that I had a stroke. Luckily she had to leave soon after.
Then the strongest RLS attack ever hit me, no dopamine you see. And I could not walk except like a drunkard from wall to wall, two nurses finally grabbed me on both sides to take me to my bed. This was at 4 pm. my next dose of mirapex was due the earliest at 8 pm.. That was a hellish other four hours. I could not even argue well. What was a little help that I remembered that hydrocodone helps. Turned out that it was prescribed for me and I did not take it in the morning. So they gave it to me at 6 p.m. and that helped a little. But what I needed was Mirapex.
Taking Mirapex, hydrocodon, ativan, and temazepam that night assured me sleep, next day geodon was changed (upon my request, to Topamax, they gave me four choices of mood stabilizers) , but at a higher dose. I am up to 100 mg a day of topamax
I had my meeting with the medical; board of the unit facing five people. The doctor with whom I talked possibly 15 minutes altogether told me the diagnosis and asked me whether I agreed with it. I said: No (with the tone, like Hell, no). Then he smiled and told me his qualifications and said "even I would not attempt to medicate myself." I restrained myself stating that it is probably a good thing in view of the geodon event. Later turned out that he was not even notified of the event as he was not on call.
It was another doctor who actually advised me that I should stop taking Mirapex because that was the cause of the whole thing!!! Duh!!!
I actually tried to explain to him about the RLS and the need to take Mirapex. he said that even though I was taking Mirapex beneficially it was building up gradually and Gedeon was just the little nudge that was needed to push the whole thing over. Luckily the my own doctor relented and let me choose the other medication.
My own doctor also sent me to attend a support group of bipolar patients and that very interesting. he was supposed to but could not attend and they were rather bashful but I managed to ask some questions and stir things up a little. There were some scary stories, I tell you. I do not really think I have this disorder. The only thing my doctor could bring up as a suspicious symptom is that I speak fast (I was worried about Gloria whom I could not see for the first two days).
The story turned out well for Gloria who became much better during her stay at the hospital. Now we know what to do, thank God for the insights.
I do not care what they call me! And this whole story I believe has lots of revelance to my fellow RLS sufferers.
Thanks becat for the lovely words of encouragement and comradeship!
Jumpy Owl
(((((((((Jumpy)))))))
Jumpy,
What a loving father and husband you are. You truely extend yourself to the limit to make sure your girls are well and taken care of.
I'm sorry this is all going on. I hope your heart is full of "we are with you and we love you" from all of us here.
What a story my dear. I honestly have no words that express what I'm feeling. I'm so sure that maybe you did get some rest you needed during this stay, but I hope you are able to extend that past that week there.
My thoughts and prayers are always with you, my friend. Always drop by when you can, let us know how things are going. I'm sure you have little time for yourself, but know that we are never far away.
My heart, your friend,
Becat
What a loving father and husband you are. You truely extend yourself to the limit to make sure your girls are well and taken care of.
I'm sorry this is all going on. I hope your heart is full of "we are with you and we love you" from all of us here.
What a story my dear. I honestly have no words that express what I'm feeling. I'm so sure that maybe you did get some rest you needed during this stay, but I hope you are able to extend that past that week there.
My thoughts and prayers are always with you, my friend. Always drop by when you can, let us know how things are going. I'm sure you have little time for yourself, but know that we are never far away.
My heart, your friend,
Becat
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