Guest guest Posted June 25, 2010 Report Share Posted June 25, 2010 For anyone that is still confused please google keywords: dilantin, neurotoxin. The warning has also been published under PHENYTOIN ( Dilantin) on the medical alert from the CMTA. I was lucky enough to get a new copy of the warnings last week. Our doctor had a warning against this drug in my sons chart when he was in Cedars hospital. .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2010 Report Share Posted June 25, 2010 I need to make this clear as well. No judgement here either. I would like the new generation of CMT parents to be very clear on the list of warnings that the CMTA has established. I avoid neurotoxins on and off the medical alert. In a message dated 6/24/2010 12:03:24 P.M. Pacific Daylight Time, gfijig@... writes: Please understand I am not judging what medication anyone takes or why, nor am I questioning what your doctor has prescribed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2010 Report Share Posted June 26, 2010 I'm sorry, but I don't see the link for the expanded list. > > I feel there is some confusion here. Dilaudid is an opiate pain killer. Dilantin is an anti-seizure medication used in controlling tremors. > > WARNING: DILAUDID ORAL LIQUID AND DILAUDID 8 MG TABLETS CONTAIN HYDROMORPHONE, WHICH IS A POTENT SCHEDULE II CONTROLLED OPIOID AGONIST. SCHEDULE II OPIOID AGONISTS, INCLUDING MORPHINE, OXYMORPHONE, OXYCODONE, FENTANYL, AND METHADONE, HAVE THE HIGHEST POTENTIAL FOR ABUSE AND RISK OF PRODUCING RESPIRATORY DEPRESSION. ALCOHOL, OTHER OPIOIDS AND CENTRAL NERVOUS SYSTEM DEPRESSANTS (SEDATIVE-HYPNOTICS) POTENTIATE THE RESPIRATORY DEPRESSANT EFFECTS OF HYDROMORPHONE, INCREASING THE RISK OF RESPIRATORY DEPRESSION THAT MIGHT RESULT IN DEATH. > > Because of the effect on the lungs, anyone with CMT and breathing problems should be aware of this medication as well as Dilantin as they may exacerbate lung function. > More about it at http://www.rxlist.com/dilaudid-drug.htm > > Dilantin (Phenytoin) is primarily a anti-seizure medication but has been used to help painful nerve conditions like Neurontin (Gabapentin) See http://www.rxlist.com/dilantin-drug.htm dose is not known. The lethal dose in adults is estimated to be 2 to 5 grams. The initial symptoms are nystagmus, ataxia, and dysarthria. Other signs are tremor, hyperreflexia, lethargy, slurred speech, nausea, vomiting. The patient may become comatose and hypotensive. Death is due to respiratory and circulatory depression. > > My own experience with a Phenytoin deritative medication was Mysoline (Primidone) which an internist believed would help control my tremors. It is also an anti-convulsent medication. It is also of use in controlling essential tremor. Unfortunately, when I received the bottle of Primidone I didn't research it until I started feeling WAY WORSE - back to ataxia, falling, staggering around, and spacisty. > > Then I discovered it has Phenytoin in it, and this was creating an overnight return to my horrible CMT symptoms experienced as a young teen. When I discovered Phenytoin on the Medication Alert List, I stopped it immediatly, went to a new neurologist, who confirmed my discovery and found me something very safe, non-seizure med, for tremors and I was back to normal within a couple of days. > > In re-reading the Medication Alert List, I don't find Dilaudid there, nor on the expanded list, but it is still extremely important to recognize the effect on breathing. http://www.charcot-marie-tooth.org/med_alert.php at this site there is a primary list of medications for people with CMT to avoid, if you click on the 'expanded list' there are more. > > Please understand I am not judging what medication anyone takes or why, nor am I questioning what your doctor has prescribed. We are all different, some of us have pain, others don't. But please be aware of side effects/contraindications/and chemical makeup of medications because one or more may cause CMT to worsen. Please be very careful and question what you are prescribed and why, you can also ask your pharmacist to break down the chemistry of a medication to see if there are any derivatives from the Medication Alert List in your prescription. > > Gretchen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2010 Report Share Posted June 27, 2010 My first experience was in the late 80's when I visited the MDA Clinic in Nashville, TN. I was complaining about leg ache and fatigue and they placed me on Dilantin (anti-seizure drug). I began to have much more energy and was ready to give the sight-seeing tours our guests expected when visiting us in Music City. I felt great for almost two weeks. My guests had gone by this time and I started feeling as though I had the flu (cold chills, aches and pains) and then I became lethargic and broke out with a severe rash. I made an appointment to see a dermatologist and had my, just barely driving with a learner's permit daughter, drive me downtown Nashville to see the doc. The doctor said it was probably a an allergic reaction to something and asked what was new in my diet. I could not think of a thing! My daughter then chimed in and said " didn't you start that new drug called 'Dilantin', " ? I couldn't believe she even knew that I took meds, much less remembered the name! The dermatologist looked up the reactions and immediately placed me in the hospital, where I stayed in intensive care for 2 days. One more Dilantin, I could have died! I also have severe reactions to Neurontin. I stay away from these types of meds. I do tolerate Lyrica. > > > > I feel there is some confusion here. Dilaudid is an opiate pain killer. Dilantin is an anti-seizure medication used in controlling tremors. > > > > WARNING: DILAUDID ORAL LIQUID AND DILAUDID 8 MG TABLETS CONTAIN HYDROMORPHONE, WHICH IS A POTENT SCHEDULE II CONTROLLED OPIOID AGONIST. SCHEDULE II OPIOID AGONISTS, INCLUDING MORPHINE, OXYMORPHONE, OXYCODONE, FENTANYL, AND METHADONE, HAVE THE HIGHEST POTENTIAL FOR ABUSE AND RISK OF PRODUCING RESPIRATORY DEPRESSION. ALCOHOL, OTHER OPIOIDS AND CENTRAL NERVOUS SYSTEM DEPRESSANTS (SEDATIVE-HYPNOTICS) POTENTIATE THE RESPIRATORY DEPRESSANT EFFECTS OF HYDROMORPHONE, INCREASING THE RISK OF RESPIRATORY DEPRESSION THAT MIGHT RESULT IN DEATH. > > > > Because of the effect on the lungs, anyone with CMT and breathing problems should be aware of this medication as well as Dilantin as they may exacerbate lung function. > > More about it at http://www.rxlist.com/dilaudid-drug.htm > > > > Dilantin (Phenytoin) is primarily a anti-seizure medication but has been used to help painful nerve conditions like Neurontin (Gabapentin) See http://www.rxlist.com/dilantin-drug.htm dose is not known. The lethal dose in adults is estimated to be 2 to 5 grams. The initial symptoms are nystagmus, ataxia, and dysarthria. Other signs are tremor, hyperreflexia, lethargy, slurred speech, nausea, vomiting. The patient may become comatose and hypotensive. Death is due to respiratory and circulatory depression. > > > > My own experience with a Phenytoin deritative medication was Mysoline (Primidone) which an internist believed would help control my tremors. It is also an anti-convulsent medication. It is also of use in controlling essential tremor. Unfortunately, when I received the bottle of Primidone I didn't research it until I started feeling WAY WORSE - back to ataxia, falling, staggering around, and spacisty. > > > > Then I discovered it has Phenytoin in it, and this was creating an overnight return to my horrible CMT symptoms experienced as a young teen. When I discovered Phenytoin on the Medication Alert List, I stopped it immediatly, went to a new neurologist, who confirmed my discovery and found me something very safe, non-seizure med, for tremors and I was back to normal within a couple of days. > > > > In re-reading the Medication Alert List, I don't find Dilaudid there, nor on the expanded list, but it is still extremely important to recognize the effect on breathing. http://www.charcot-marie-tooth.org/med_alert.php at this site there is a primary list of medications for people with CMT to avoid, if you click on the 'expanded list' there are more. > > > > Please understand I am not judging what medication anyone takes or why, nor am I questioning what your doctor has prescribed. We are all different, some of us have pain, others don't. But please be aware of side effects/contraindications/and chemical makeup of medications because one or more may cause CMT to worsen. Please be very careful and question what you are prescribed and why, you can also ask your pharmacist to break down the chemistry of a medication to see if there are any derivatives from the Medication Alert List in your prescription. > > > > Gretchen > > > Quote Link to comment Share on other sites More sharing options...
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