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Dilantin toxicity due to doctors bad call.

Mon, 06/03/2019 - 11:23
Yes I am writing this to you today as being toxic on dilantin I am sorry if thing are misspelled. A week ago I was taken to the er for a seizure via ambulance. At the er they did blood work and said my dilantin levels where at 1.1 which is weird because I have been taking my medications. The er doctor gave me an ivy loading dose of dilantin. And instructed me to take my medications as prescribed the next day I went to the er because my head felt numb along with my hands and slurred speech my level at this time was 38. EMS had to come get me. The doctor told me not to take my meds. But out of habit when my medications alarm went off I took my dose of 300 mg. I was rushed to the er again because I could not walk I was yelled at by the doctor and told I was going to be worked up as a psych patient. I signed out AMA and the EMS guys helped me into my car. I was taken t ok another local hospital where my levels where checked and they where at 40.5. The doctor wanted me to stay in there but I refused having a strong distrust for drs now. My neurologist called and told my mdpoa that my toxicity was likely due to to ivy dose I got in the er. And that is should run out if my system. Two days later my level where at 38.7. I am going on a week now and I was starting to get better but now all the sudden my eyes are bouncing up and down again and it's getting hard to walk again. I have not taken my medication but this is what I felt like before at the start of all this. I need advice or help I need to understand what is going on I feel like I am dying but I know I am not. Is it possible that my levels are still high after a week of recovery?

Comments

I sounds like you need help. 

Submitted by birdman on Mon, 2019-06-03 - 19:41
I sounds like you need help.  I hope you have a follow up visit scheduled soon with your doctor.  If not you need to get one so that you get your questions answered and get the medication straight.I am not a doctor but I have had high Dilantin toxicity before and I've had other side effects from high doses.  One experience that may relate is where I was trying a new medication (felbamate) with my Dilantin.  When the seizures continued doctors gave instructions over the phone that felbamate may work better alone so I was instructed to get off the Dilantin.  After some serious seizures my mother was able to give me a couple of 2 mg Ativan and then doctors instructed her to do a loading dose (1400 mg in 24 hrs).  For days and months after I had panic attacks.  This could have been caused by the multiple generalized seizures I had, but I believe the huge Dilantin dose may have had something to do with it.  The eyes bouncing and difficulty walking sounds like high Dilantin levels, but also understand your brain has been through a workout that may take some time to adjust to.  Maybe the experience has left you permanently extra sensitive to Dilantin.  I hope not.  But you need to get with your doctor to get these questions answered.I wish you well,Mike  

Hi Chrisma85, Thanks so much

Submitted by Anonymous on Tue, 2019-06-04 - 09:43
Hi Chrisma85, Thanks so much for sharing your story, it sounds like you’ve been through a lot. It’s important that you follow-up with your doctor discuss any potential side effects, changes in behaviors, symptoms, or seizure types. For more information regarding seizure medications & side effects please visit, https://www.epilepsy.com/medications/phenytoinhttps://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects&    https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/blood-testing You may want to consider with your neurologist having a device that can help track your seizures, by visiting,  https://www.dannydid.org/ , and by keeping a seizure diary https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary These tools may be helpful in identifying & tracking seizures, other symptoms, managing medication & other therapies, recognizing triggers and health events that may affect seizures and wellness, which you can share with your healthcare team. Learn more about seizure alert devices,  https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf    and managing your epilepsy,https://www.epilepsy.com/learn/managing-your-epilepsy/managing-my-seizures-101    &    https://www.epilepsy.com/learn/challenges-epilepsy/seizure-emergenciesIt may be helpful to connect with other people who live with epilepsy to ask questions, share experiences, and find and give support to each other. Contact your local Epilepsy Foundation at epilepsy.com/localsupport  , to find support groups, events, and programs in your community. If you have additional questions, please contact our 24/7 Helpline, by emailing, contactus@efa.org , or  at 800-332-1000, where a trained information specialist can connect you to resources, provide referrals and additional support.https://www.epilepsy.com/sites/core/files/atoms/files/pg1L_HowWeCanHelp_09-2018.pdf

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