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Hello Everyone and thank you so much for your support. Everything you have suggested has been done for my brother. I am sorry for the delay in my response, I just returned from a stay with my brother in order to give my SIL a break. You see, the nurses have never seen tremors like my brother has and they are quite intimidated in terms of helping him through it. It is horrific....his body thrashes like a fish does out of water and now it is happening even when he doesn't even move.:eek: It is heartbreaking to see him go through these tremors and now he is having periods of unconsciousness throughout them. Two nights I was there they lasted over 2 hours in duration. He is pretty much alert during these episodes and is able to nod his head. I rode it through with him sharing happy thoughts that will relax him and take the fear away. I tell him that I am there and that his vital signs are stable but we are unable to get a BP because of the amount of movement going on in his extremities. The medical staff gives him every med that is ordered and then some and it still doesn't help. He is on clonidine .4mgs, morphine 2mgs every 4 hours, Darvocet every 4 hours, Inderal SR 4 times a day, Ativan every 6 hours and some other meds that I have forgotten to memory. Anytime he is moved he goes into these tremors lasting about 40 minutes to an hour just from moving him off his back to put cream on it to prevent any breakdown/bedsores. And then the worst seem to come when he gets tremendous headaches and pain in his chest which cannot be relieved by the meds and those are the tremors that last hours leading to more and more periods of unconsciousness. My brother is afraid because he uses everything he's got to come out of them and is afraid that he is slipping into a coma and one time will not come out. He says he hears everything we are saying except some of the times he goes unconscious and I know he does because he is able to nod when I ask him questions.

Anyway, they transferred him to John Hopkins and the doctors there want to take him off of most of his meds blood pressure & pain meds and my brother is refusing stating that if they do he will go into a coma and die. He is so afraid and I know it is legitamate fear because I have seen his tremors worsten even with the slightest decrease in his clonidine. They also feel that he has had a stroke because on side of his body is weaker than the other although for me and others this would be difficult to see since all of his extremities have weakened due to the neuropathy.

My brother saw the cardiologist and has yet to see the neurologist. The cardiologist says that if he refuses their recommendations to discontinue his meds then they will have to discharge him. They sat him up to get an orthostatic BP and the room was filled with doctors and medical staff there to observe the tremors my brother exhibits....my SIL said the room was packed with observers and she almost wanted to hand out popcorn!!:rolleyes: This is exactly what my brother doesn't want....he is afraid he will be a guinea pig and he just wants to live out the rest of his life in peace. But how when he experiences such pain and suffering despite being on all the meds. I talked with my brother and told him that the meds he was on weren't working because he is just getting worse. The doctors at the other hospital wanted to get him off the meds as well because they feel that his kidneys cannot handle them and also they are not working and perhaps making things worse. When they decreased the clonidine by .1mg from .5mg to .4mgs he worstened for a day and then didn't have any tremors. Then they went from .4mgs to .3mgs and he had a night of long tremors but never gave them a chance to see if he stabilized the night after that and put it back up. I am trying to tell my brother that perhaps he is going through a detox since he has been on the clonidine for so long and on the highest dose any doctor has ever seen. So I am trying to convince my brother to give it a try since he is in a very good hospital where he will be monitored closely. If they discharge him I doubt very much if they will provide him scripts for his meds anyway leaving him in the same situation only without medical monitoring.

He is not taking any phone calls according to my SIL. Today they want to do an EEG and sit him up and watch him through one of the tremors to rule out seizure activity. After that I do not know whether they are discharging him home or whether he has agreed to their suggestions of going off the meds. I think that they want to take him off the meds and see what symptoms need to be treated and start all over again. I think they call that a "med wash" but with my brother's condition will he be able to survive that????

Thanks for the encouragement and suggestions. All the tests have been done and the doctors feel that my brother has the most complicated and worse case of Autonomic Failure that they have ever seen. We need a miracle and we need it soon.

~ Goody:angel: :wave:
the thing is,there are other meds besides clonidine that could possibly work better for the tremors he is having.i still don't really understand how and what could possibly be triggering this.it really IS rather crazy since these are obviously not siezures.could this just be very severe spasticity?some peoples spasticiy,believe me,can get hidious at times.botox could be a possibility there,depending on just where the actual tremors are happening..just a thought.i know from my SCI,i will get horrid spasticiy that can appear to look like actual tremors or even a siezure.it all depends on the level of the spasticity and why or what is actually triggering it.this would be a motor nerve issue.can you describe just exactly what the tremors appear like?what exactly happens during these episodes,what shakes?

i also think,considering the kidneys and possible liver affectation,he really does need to drop the darvocet completely.quite honestly,this is about the lowest dose of any type of narcotic possible to give any patient.it would be totally and completely useless to someone in his condition anyway.trying something like oxy IR,which is just percocet without the tylenol,its just pure 5mg oxycodone.a much much better choice for many reasons.taking morphine and dropping WAY down to the darvocet really is not even worth his time and the risks of the 650mgs of tylenol he is getting with every dose.anything you can do right now to limit the amount of actual tyleonl,ESPESCIALLY with kidney issues,well it really doesn't take a rocket scientist to figure this one out,ya know?vicodin would be good too,if they used norco since this has only 325mgs of tylenol,but i still really think the oxy IR for his regular break thru med just makes sooo much sense for his needs specifically.honestly,that darvocet is doing absolutely nothing for him right now and is compromising the kidney function he still has left.tho it is actually metabolized in the liver not the kidneys,the kidneys are still being affected when the by products are filtered thru them before they are passed along outside the body,trust me on this one.i actually have a kidney disease and a wonderful nephrologist who helps me to maintain my kidney function to the optimum level right now,and he told me to stay the heck away from tylenol products.my pain clinic will not even Rx any tylenol products at all to anyone for any reason,just because the cumulative affect that tylenol can have on both the liver and the kidneys.the thing is,when there are other meds that quite frankly would do a much more effective job for his type of pain,and getting totally rid of any tylenol,well,you cannot beat that.he really does need to talk to his doc about trying the oxy IR.it works pretty good for some of my breakthru pain.

i do wish i could be of much more help to you.i really feel so badly for what your brother and your family are currently going thru,really.please keep us posted on how he is doing.i really DO want to know,K? hang in there,FB
Hi, Feelbad:wave: Thanks for your support and concern. Right now the doctors have taken my brother off of both the morphine and Darvocet....he is on Toradol by mouth which he claims does nothing for him. I think the plan is to get him off as many of the meds as possible and try to start all over. I believe that they call this a "med wash" almost as if to cleanse his system due to a possible toxicity to his system. That is the best I can explain it.

The way I see it, things could not get much worse. I have witnessed my brother's tremors and while they do have a ture physiological component that is out of his control they also seem to have a psychological component with anxiety although my brother will deny this. He goes into the tremors which start with twitching of the head and upper extremities. And eventually get into the violent type that have him flip flopping on the mattress sometimes with his entire body coming off of the mattress. It is quite scary to witness this. As I talk him through he calms down a bit and I am able to get nods to questions and the sort. He then goes into the mild tremors and then into the violent ones and after a few cycles of this some periods of unconciousness occur as if his body shuts down because it has had enough. Then he gasps for air and is in a mild tremor state in which I can talk to him and elicit a response to my questions. When he hears something from me or the medical personell that he does quite like he will then pound the mattress with his hands and legs kicking almost as if having a temper tantrum. For example, one of the nurses asked me to leave the room to see if less stimuli would bring him out of it. When I left he started having this fit like kicking and pounding.....in other words it seems that fear and anxiety worsten the tremors. I do believe that he is in severe pain when this happens for he has pointed to his head and his chest and his abdomen and when asked confirms bad chest pain, headache and nausea. When I look up detox these are some of the symptoms so what the doctors propose may very well be going on. The only thing is when I looked up Clonidine withdrawal it says that one must decrease the dose slowly and introduce other meds in order to prevent hypertensive crisis. Whenever they went to decrease his clonidine in the other hospital they have not done this so I am going to bring this up with his doctors when I arrive today.

They intend to do an EEG in order to rule out any seizure activity. I am almost certain from watching what my brother is going through that he is not having a seizure but it is good that they want to rule it out.

The doctors are well aware of my brother's risk of renal failure which is part of the reason that they want to get him off the Clonidine since it could be nephrotoxic.

Well I have to get ready for my trip. I will update you in a few days when I return. Thanks again for all the support.

(((((HUGS))))) ~ Goody:angel: :wave: