Long Term Dilantin use

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I have been on epilepsy medication for over 40 years. I was originally started on the drug phenobarbatol and then later in life transitioned to only Dilantin.

I have been on Dilantin for over 20 years + now and last year my neurologist said I was suffering from the effects of long term Dilantin use.

I would like to hear from other people with similar stories (I am new to this site)

Basically, my problems were as follows:

In 2009, I had extreme back pain and lethargy- I was sent to a back surgeon who then again referred me to a neurologist after a cat scan. The neurologist indicated that my PTH (parathyroid) levels were abnormal and I had osteomalcia.

The neurologist worked to change my medication at first to Keppra, then to Epilim. I had seizures on Keppra and Epilim caused too many side effects. The end result was being put back onto Dilantin over a 6 month period of time. Now I am back on Dilantin with Calcium and Vitamin D supplements. Seizures are ok but I am still worried about the long term effects of Dilantin.

Generally, my quality of life is ok. I am married and can drive. My concentration is not the best. I am not sure if Dilantin affects my sleep (I get up around 4 to 5 times a night) so I wonder if my lack of concentration is due to the lack of good sleep or the long term use of Dilantin.

Has anyone else experienced these symptoms?

Comments

Greetings,Gene I have been

Submitted by Send her my love on Mon, 2017-10-23 - 12:41

Greetings,Gene I have been taking Dilantin regularly about 40 years.I too have experienced the memory loss and, I am quick to forget what I am saying if interrupted while talking. I have experienced hair loss and, bone pain. I was told by my doctor Dilantin is not a safe one but, you must weigh your other options which is continually suffering seizures. I have done a vast amount of research on my own, I have spoken to Nerologist and, believe it or not even discussions with pharmacists.. There seemed to be total agreement concerning the long term effects. I am not planning to discontinue using Dilantin as it has worked to almost keep me seizure free. I take over 400 MG. at bedtime. I was prescribed 600 MG at bedtime around 2 years ago this was too much I had bad effects such as forgetting my own name,birthday. I was way out there and felt very, sick I had such bad dizziness I could not function correctly for 3 hours after taking my Dilantin. I am still having memory trouble with taking 400 MG but, I am able to function normally so be it. I have also found proof of mental depression caused by Dilantin. Please note it is extremely dangerous to mix Dilantin with anti-depressants or stimulants reaon being they all effect the same parts of your nervous system and have been shown to be lethal. I am not a doctor nor am I a specialist in the medical field. I have not attended medical school but, I do have a love of learning..... I might be considered a book & man BOOKMAN of a lot of useless FACTS... Ha ha My name is Timothy I invite conversation if one desires to. Good. Day... TIMOTHY

October 27, 2017Cassandra E.

Submitted by Ardnas11@gmai.com on Fri, 2017-10-27 - 20:10

October 27, 2017Cassandra E. Hood(404) 749-79987.cehood@gmail.com To Whom It May Concern:I got in touch with American Civil Liberties Union of Georgia. They said they could only sue for a group of people, not just one. I got in touch with them online.March 2015, I applied for permission from Grady Healthcare System, 80 Jesse Hill Jr.Dr., Atlanta, Georgia 30303, to have online (computer) access to my medical records. April 27, 2015, I discovered on 2/3/2011, I had been poisoned by the phenytoin that’s in the Dilantin 300 mg I had taken for approximately 17 years. No doctor from Grady Healthcare System never told me this or gave me anything in written form.In my possession, I have a chart from Grady Healthcare System, missing the 4 page under Visit from Diagnoses, Poisoning by phenytoin, and Poisoning by hydantoin derivatives, with Hall, Cassandra, CA. Also, dated 2/3/2011, I have Lab Results. On, 05/12/2011, I was diagnosed with Hyperthyroidism, Rhee, Mary K., MD., from Grady Healthcare System. Radioiodine therapy was used to dissolve my thyroid. October 8, 2012, I received a letter from Ben Massell Dental Clinic, my teeth were decaying. Since that time I have my bad teeth pulled. Only one remained and it just exploded in my mouth. October 8, 2013, I have an Office Visit from Grady, stating that I had Nuclear sclerotic cataracts of both eyes, and Quadrantanopia, Eye Clinic, Jessica G. Shantha, MD. Office Visit from Grady, 9/15/2014, I had Chronic Hepatitis C., but after taking Harvoni for eight weeks I am cured of the disease, but not the virus, Shelly-Ann N. Fluker, MD.March 30, 2015, I had an appointment with Dr. Bishop S. Hanna. He was my Primary Care Physician, with Grady Healthcare System for nearly 2 years. Most doctors who work at Grady are only on your case for approximately 3 months. I was complaining of Hypothyroidism, fatigue, muscle weakness and spasms, slow speech and movement, baldness, constipation, tiredness, tingling in hands, etc. At the time, Dr. Hanna had me on 75mg of Synthroid. He told me not to take anymore Synthroid. Dr. Hanna made a statement, “Whatever it was had come from my brain, not my thyroid,” or vice-a-versa. I asked him what was he talking about, he just ignored me. Since, March 30, 2015, I have not seen Dr. Hanna.October 2015, I looked on the internet www.drugs.com/sfx/phenytoin-side-effects.html., and discovered that the phenytoin poisoning was the cost of decaying teeth, hyperthyroidism, heart disease, frequently swollen ankles, legs, and feet, high blood pressure, loss of hair, etc. November 11, 2015, someone at Grady added Dilantin Toxicity to my medical record. I have a print out of the transaction. Fortunately, Angela Bevill dated 10/22/2015, I had a personality disorder, which is missing from my mental health records. Ms. Bevill worked at 10 Park Place, where I see my psychiatrist. Ms. Bevill was trying to find a place for me to stay, which means she has access to my mental health records.Healthline.com, Learn the Effects of Hepatitis C on the Body, I discovered, “Sometimes Hepatitis C can cause the immune system to mistakenly attack or damage thyroid tissue. This can cause an overactive thyroid (hyperthyroidism), which can lead to sleep disorders and weight loss.” January 14, 2016, I received a phone call from Dr. Fluker, after I had taken 3 blood test for Hepatitis C. I was informed that I am cured of the disease, but I still have the virus.March 31, 2016, Dr. Njoku-Animashaun diagnosed me as, Severe Depression with Psychotic, Features, Mood-congruent.August 17, 2016, while looking at Lester Holt Nightly News, I found out that thyroid cancer is 80 percent overdiagnosed. Dr. Luc stated, “Most diagnosed with thyroid cancer is not an emergency. It’s slow growing, unlikely to cause symptoms and death.” January 9, 2017, Dr. Tapias diagnosed me, Severe episode as, Severe episode of recurrent major depressive disorder, without psychotic features.On, July 24, 2017, Dr. Palanci stated, I have Severe Single Episode of Major Depression Disorder, with Psychotic features. On today, I have to take one extra pill Synthroid, I am subject to heart disease, frequently swollen ankles, legs, and feet, high blood pressure, blurry vision, nuclear cataracts in both eyes, quadrantanopia, right homonymous hemianopsia, blepharitis, doctors have warned that I can not drive, drowsiness, nervousness, muscle spasm and weakness, hoarseness, slow thought process, loss of balance, general feeling of tiredness and weakness, backache, changes in mood, difficulty with memory, thinking, and talking, difficulty producing speech, disoriented, accidental injury (ankle fracture) personality disorder, major depressive disorder, hypochondriac, bipolar disorder, etc.Thank you for your time.Respectfully,Cassandra E. Hood

October 27, 2017Cassandra E. Hood(404) 749-79987.cehood@gmail.com To Whom It May Concern:I got in touch with American Civil Liberties Union of Georgia.  They said they could only sue for a group of people, not just one. I got in touch with them online.March 2015, I applied for permission from  Grady Healthcare System, 80 Jesse Hill Jr.Dr., Atlanta, Georgia 30303, to have online (computer) access to my medical records.  April 27, 2015, I discovered on 2/3/2011, I had been poisoned by the phenytoin that’s in the Dilantin 300 mg I had taken for approximately 17 years.  No doctor from Grady Healthcare System never told me this or gave me anything in written form.In my possession, I have a chart from Grady Healthcare System, missing the 4 page under Visit from Diagnoses, Poisoning by phenytoin, and Poisoning by hydantoin derivatives, with Hall, Cassandra, CA.  Also, dated 2/3/2011, I have Lab Results. On, 05/12/2011, I was diagnosed with Hyperthyroidism, Rhee, Mary K., MD., from Grady Healthcare System.  Radioiodine therapy was used to dissolve my thyroid.  October 8, 2012, I received a letter from Ben Massell Dental Clinic, my teeth were decaying.  Since that time I have my bad teeth pulled.  Only one remained and it just exploded in my mouth. October 8, 2013, I have an Office Visit from Grady, stating that I had Nuclear sclerotic cataracts of both eyes, and Quadrantanopia, Eye Clinic, Jessica G. Shantha, MD.  Office Visit from Grady, 9/15/2014, I had Chronic Hepatitis C., but after taking Harvoni for eight weeks I am cured of the disease, but not the virus, Shelly-Ann N. Fluker, MD.March 30, 2015, I had an appointment with Dr. Bishop S. Hanna. He was my Primary Care Physician, with Grady Healthcare System for nearly 2 years.  Most doctors who work at Grady are only on your case for approximately 3 months.  I was complaining of Hypothyroidism, fatigue, muscle weakness and spasms, slow speech and movement, baldness, constipation, tiredness, tingling in hands, etc.  At the time, Dr. Hanna had me on 75mg of Synthroid.  He told me not to take anymore Synthroid.  Dr. Hanna made a statement, “Whatever it was had come from my brain, not my thyroid,”  or vice-a-versa.  I asked him what was he talking about, he just ignored me.  Since, March 30, 2015, I have not seen Dr. Hanna.October 2015, I looked on the internet www.drugs.com/sfx/phenytoin-side-effects.html., and discovered that the phenytoin poisoning was the cost of decaying teeth, hyperthyroidism, heart disease, frequently swollen ankles, legs, and feet, high blood pressure, loss of hair, etc. November 11, 2015, someone at Grady added Dilantin Toxicity to my medical record.  I have a print out of the transaction. Fortunately, Angela Bevill dated 10/22/2015, I had a personality disorder, which is missing from my mental health records.  Ms. Bevill worked at 10 Park Place, where I see my psychiatrist. Ms. Bevill was trying to find a place for me to stay, which means she has access to my mental health records.Healthline.com, Learn the Effects of Hepatitis C on the Body, I discovered, “Sometimes Hepatitis C can cause the immune system to mistakenly attack or damage thyroid tissue.  This can cause an overactive thyroid (hyperthyroidism), which can lead to sleep disorders and weight loss.”   January 14, 2016, I received a phone call from Dr. Fluker, after I had taken 3 blood test for Hepatitis C.  I was informed that I am cured of the disease, but I still have the virus.March 31, 2016, Dr. Njoku-Animashaun diagnosed me as, Severe Depression with Psychotic, Features, Mood-congruent.August 17, 2016, while looking at Lester Holt Nightly News, I found out that thyroid cancer is 80 percent overdiagnosed.  Dr. Luc stated, “Most diagnosed with thyroid cancer is not an emergency.  It’s slow growing, unlikely to cause symptoms and death.”  January 9, 2017, Dr. Tapias diagnosed me, Severe episode as, Severe episode of recurrent major depressive disorder, without psychotic features.On, July 24, 2017, Dr. Palanci stated, I have Severe Single Episode of Major Depression Disorder, with Psychotic features.  On today, I have to take one extra pill Synthroid, I am subject to heart disease, frequently swollen ankles, legs, and feet, high blood pressure, blurry vision, nuclear cataracts in both eyes, quadrantanopia, right homonymous hemianopsia, blepharitis, doctors have warned that I can not drive, drowsiness, nervousness, muscle spasm and weakness, hoarseness, slow thought process, loss of balance, general feeling of tiredness and weakness, backache, changes in mood, difficulty with memory, thinking, and talking, difficulty producing speech, disoriented, accidental injury (ankle fracture) personality disorder, major depressive disorder, hypochondriac, bipolar disorder, etc.Thank you for your time.Respectfully,Cassandra E. Hood

October 27, 2017Cassandra E. Hood(404) 749-79987.cehood@gmail.com To Whom It May Concern:I got in touch with American Civil Liberties Union of Georgia. They said they could only sue for a group of people, not just one. I got in touch with them online.March 2015, I applied for permission from Grady Healthcare System, 80 Jesse Hill Jr.Dr., Atlanta, Georgia 30303, to have online (computer) access to my medical records. April 27, 2015, I discovered on 2/3/2011, I had been poisoned by the phenytoin that’s in the Dilantin 300 mg I had taken for approximately 17 years. No doctor from Grady Healthcare System never told me this or gave me anything in written form.In my possession, I have a chart from Grady Healthcare System, missing the 4 page under Visit from Diagnoses, Poisoning by phenytoin, and Poisoning by hydantoin derivatives, with Hall, Cassandra, CA. Also, dated 2/3/2011, I have Lab Results. On, 05/12/2011, I was diagnosed with Hyperthyroidism, Rhee, Mary K., MD., from Grady Healthcare System. Radioiodine therapy was used to dissolve my thyroid. October 8, 2012, I received a letter from Ben Massell Dental Clinic, my teeth were decaying. Since that time I have my bad teeth pulled. Only one remained and it just exploded in my mouth. October 8, 2013, I have an Office Visit from Grady, stating that I had Nuclear sclerotic cataracts of both eyes, and Quadrantanopia, Eye Clinic, Jessica G. Shantha, MD. Office Visit from Grady, 9/15/2014, I had Chronic Hepatitis C., but after taking Harvoni for eight weeks I am cured of the disease, but not the virus, Shelly-Ann N. Fluker, MD.March 30, 2015, I had an appointment with Dr. Bishop S. Hanna. He was my Primary Care Physician, with Grady Healthcare System for nearly 2 years. Most doctors who work at Grady are only on your case for approximately 3 months. I was complaining of Hypothyroidism, fatigue, muscle weakness and spasms, slow speech and movement, baldness, constipation, tiredness, tingling in hands, etc. At the time, Dr. Hanna had me on 75mg of Synthroid. He told me not to take anymore Synthroid. Dr. Hanna made a statement, “Whatever it was had come from my brain, not my thyroid,” or vice-a-versa. I asked him what was he talking about, he just ignored me. Since, March 30, 2015, I have not seen Dr. Hanna.October 2015, I looked on the internet www.drugs.com/sfx/phenytoin-side-effects.html., and discovered that the phenytoin poisoning was the cost of decaying teeth, hyperthyroidism, heart disease, frequently swollen ankles, legs, and feet, high blood pressure, loss of hair, etc. November 11, 2015, someone at Grady added Dilantin Toxicity to my medical record. I have a print out of the transaction. Fortunately, Angela Bevill dated 10/22/2015, I had a personality disorder, which is missing from my mental health records. Ms. Bevill worked at 10 Park Place, where I see my psychiatrist. Ms. Bevill was trying to find a place for me to stay, which means she has access to my mental health records.Healthline.com, Learn the Effects of Hepatitis C on the Body, I discovered, “Sometimes Hepatitis C can cause the immune system to mistakenly attack or damage thyroid tissue. This can cause an overactive thyroid (hyperthyroidism), which can lead to sleep disorders and weight loss.” January 14, 2016, I received a phone call from Dr. Fluker, after I had taken 3 blood test for Hepatitis C. I was informed that I am cured of the disease, but I still have the virus.March 31, 2016, Dr. Njoku-Animashaun diagnosed me as, Severe Depression with Psychotic, Features, Mood-congruent.August 17, 2016, while looking at Lester Holt Nightly News, I found out that thyroid cancer is 80 percent overdiagnosed. Dr. Luc stated, “Most diagnosed with thyroid cancer is not an emergency. It’s slow growing, unlikely to cause symptoms and death.” January 9, 2017, Dr. Tapias diagnosed me, Severe episode as, Severe episode of recurrent major depressive disorder, without psychotic features.On, July 24, 2017, Dr. Palanci stated, I have Severe Single Episode of Major Depression Disorder, with Psychotic features. On today, I have to take one extra pill Synthroid, I am subject to heart disease, frequently swollen ankles, legs, and feet, high blood pressure, blurry vision, nuclear cataracts in both eyes, quadrantanopia, right homonymous hemianopsia, blepharitis, doctors have warned that I can not drive, drowsiness, nervousness, muscle spasm and weakness, hoarseness, slow thought process, loss of balance, general feeling of tiredness and weakness, backache, changes in mood, difficulty with memory, thinking, and talking, difficulty producing speech, disoriented, accidental injury (ankle fracture) personality disorder, major depressive disorder, hypochondriac, bipolar disorder, etc.Thank you for your time.Respectfully,Cassandra E. Hood

Thanks, I have the same

Submitted by Bfrmr22 on Mon, 2018-01-22 - 19:04

Thanks, I have the same symptoms. I've always thought it was from my scoliosis (62° out). I have all the same symptoms you described above. I'm a 46 year old male and have been on diliantin since I was 7 years old but seizures free.