Dilantin Horror Story
This is my story and I’m sticking to it!
I had Dilantin Toxicity and was going into complete shutdown. That's what I call it anyway. Some day I'll research that part of it to see. I have been taking Dilantin for about 4 years (seizure control medication for two seizures I had 4 years ago that seemed to have no rhyme or reason) - so the neurologist told me. I was taking 5 pills every night and was fine, no more seizures. But I kept losing weight - (as suggested by my doctor to control my Diabetes) and, although my new Doctor (have had him for about 1 1/2 years) hasn't admitted that that was the biggest cause; I believe that the excess dosage started to accumulate in my body.
Anyway, my body started to let me down. Small things at first. Things like some forgetfulness (normal in old people, right), Dizzy spells - the doctor diagnosed as vertigo and prescribed exercises. Dizziness kept getting worse and worse - especially in the morning - by noon I started to get better so kept doing the exercises. When we went to Vegas in October with my sister, I started to have some imbalance when I walked. It was the worst Vegas trip I have been on - Lawrence constantly holding on to me so I wouldn't fall, leading me from Slot to Slot ... LOL
By the time I was at my worst (middle to end of February) I could not walk in the morning because my legs were like two rubber bands and it felt as if I had MS! I was very dizzy all of the time, I was nauseous, and I could not use the computer for long, and could not read because I had double vision. During the night - except for those dreadful moments when I would wake in the middle of the night to go to the bathroom and fall on the floor before Lawrence could get me up and into the bathroom - I would have very vivid weird dreams. I would wake as late as 8:30 or 9 and still feel tired and want to go back to sleep. I could not shower by myself because I could not stand up that long. My voice was getting weaker and shakier every day. When I did talk, the words often came out wrong, or completely inappropriately. I was forgetting way more names, of things and people. I was constantly nauseous and couldn't eat much so I kept losing weight. Strangely, I got somewhat better after noon every day and at least could walk a little (with Lawrence hovering), but our lives were reduced to a very small window of activity. If I had to write a schedule of Lawrence's day in February, here is what it would look a like (The following is somewhat tongue in cheek but …):
Take Irene to the Grocery store. Make sure we make a list before because she can't remember what we need. Latch her on to a shopping cart (too bad Irene can't fit into the child's seat but maybe ... soon .... Walk beside her while she maneuvers herself around the store always at her side unless I am running around getting veggies etc. Watch her (and suffer for her) while she is trying to make decisions on what to buy and just not caring that much anyway. Visit with the grandkids while Irene mostly sits on the sofa smiling inanely looking vacant, so take care of the most of the children's needs myself. Lift and play with the kids myself because Irene has no strength. If we take Frances for a walk, make sure Irene holds on to the stroller, so she can have support - otherwise she will fall over the first pebble and go right down to the ground. Take her to the Casino but make her stay in one place most of the time to be safe. LOL Make all business phone calls for her and listen in all the time when she is talking to someone - even family because she is getting deafer and deafer. Housework is totally my responsibility now. Irene can do some stuff in the afternoons but mornings are not her time!
One Thursday morning in late February, I cried in frustration and said to Lawrence "Maybe we should go to Emergency, I can't keep going on like this. You can't wreck your back or something because you have to hold on so tight to me all the time." He would get justifiably angry with me when I would decide to try something on my own even if it was something I would do without thinking before. He was so worried I might break a hip or something Maybe we could rent a wheelchair from them. He suggested that we wait until I was better in the afternoon and go to see the Doctor once more. We did and I saw another Doctor at the clinic. She ordered numerous blood tests (not the most important one) and a CT scan and I really began to worry. My Mom died of brain cancer which had travelled up from her lung. My Doctor called me in for an appointment for the results of my tests. Dread city!
"Well, Irene, there doesn't seem to be any problems in your blood tests (little did we know), and your CT Scan looks good."
After breathing a sigh of relief, I asked, what does that mean then, I'm still dizzy and my imbalance is worse. He showed me again how to do the Vertigo exercises to make sure I was doing them properly.
On the previous weekend, after my CT Scan, I had sat down at the internet to try to find some reason for my deteriorating condition. Not an easy thing when you are developing double vision! In a kind of desperation, I tried checking my medications again for Drug interactions and all still seemed okay, but I went to a Dilantin website and saw the word Toxicity. I looked at the symptoms and WHAMMO! I printed out the page and brought it to my Doctor's appointment.
I have had this Doctor for almost 2 years or so. He is a kind man and a thorough Doctor so I was almost embarrassed to show him the page where I had ticked off 3/4 of the symptoms of Dilantin Toxicity. I handed him the paper and said. These are my symptoms. He said I think we should have your Dilantin levels tested.
I have since found out that Dilantin levels are supposed to be checked every 3 months. To my knowledge they weren't. My Dilantin is a good reliable drug to stop seizures, if it is constantly being monitored. My Doctor was always very thorough about discussing blood test results with me because of my blood sugar levels testing every 3 month because of my Diabetes II. The ideal levels for Dilantin should be somewhere around the 40s. Mine was 168! Gulp! - Over 4 times too much!
Scene Fade out and then in (if this were a movie) LOL
From the moment I stopped taking the Dilantin, my symptoms started to disappear, one by one.
I can't seem to sleep past 6:30 in the morning and I am up and showered usually before Lawrence wakes up. I enjoy breakfast and I LOVE my crossword puzzles again. We are starting to walk again - not far but it is a start. I drove our new car in a parking lot today, so I am getting back my confidence again. My skin colour isn't grey anymore. Only bad side (most women can relate to this) I am gaining some weight back again! But I feel wonderful ....
I am talking to my sister now about sending in a proposal to the Federal govt to get funds to be a coordinator of a group of seniors who will build a cookbook (for hard times) in conjunction with the produce delivery that we do every month for Jen's IA clients. Lawrence and I (mostly Lawrence) have been putting together produce that we buy by the case and separate into boxes for them to get the week before their next IA payment when things are a little desperate. I am getting excited about the possibility of working (for pay!) again - not a strenuous or time consuming work but something I am good at.
So, there it is. I feel like a phoenix rising from the ashes of that dreadful little old lady who was facing the reality of a wheel chair. From the beginning of March I felt 90 years old, now I feel 50!
Don't mean to be morbid because I feel wonderful but to show you how far I was down ...I distinctly remember telling Lawrence that I felt like the woman whose tombstone read "See, I told you I was sick!"
My Dilantin levels are down to 45 now. I am taking 2 pills in the morning and 2 pills at night.
My lesson in all of this:
Be my own monitor and trust my own instincts about my health - use the internet or, if I can’t myself, ask a friend to help me look at the all effects of any medications I am taking
The bright side to this horror story is that I have changed the way I look at my life now. I do NOT want to while away my time doing stupid stuff (everyone has their own definition of “stupid” here). I will do what I WANT to do more often along with what I SHOULD do. I will love my husband even more because I appreciate the kind of support he is – I will be much nicer to him in case I need that much support again. I will tell my children more about me and my health. They worry; they should be in the know about what is happening to their Mother.
During the darkest time of this dreadful experience, I was adjusting my head to accept the fact that this was the way it was going to be, going downhill until I was a vegetable. I actually was adjusting! I had started a letter to all my children to tell them things that I might totally forget!
How fortunate for me to have a second chance. I am now stronger than I have been for a long while. My outlook on life is much more positive and I can now see a future for me and with my family. Corny? Maybe.
Okay, want to change your life and be happier, have more drive and enthusiasm? We all can do it, you know, just don’t become toxic on Dilantin or any drugs or medications so you can grasp the concept of happiness, toxicity can kill you!
My love to all my family and friends who have so supportive through this nightmare.
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