Hi

[TheresaA]

Let me introduce myself: my name is Theresa, I'm 48 and have been taking Dilantin since I was 22 (when I suffered a severe brain trauma). Dilantin has worked great for me so far in preventing seizures (I had 2 Grand Mals when Hopkins neurologists had taken me OFF of Dilantin). As for the side effects... I've had anxiety and depression and my back hurts. I've been taking 200mg per day, but I read that the dosage might have to increase with age? I hope not!

 

[valeriedl]

Good to meet you, I know you'll get lots of questions answered here.

I'm not on dilantin, I'm alergic to it, but I am on keppra, topamax, lamictal and lamictal. I've never had issues with being depressed, but I know because of the keppra I have problems with anger.

I do have back problems however. I think it's a pinched nerve but I'm not positive about that. I never thought that it might be related to the epilepsy. Did your dr say that it was the epilepsy or one of the meds that caused your back problems?

 

[TheresaA]

Hi Valerie,

A neurologist at Hopkins told me that one of the side effects of Dilantin is that it weakens the bones, depletes the bone marrow & that I'll have to take calcium pills. My back is fine most days, but I can tell whenever it's gonna rain because my back and my former sprained ankle start to hurt really bad. Looking back at all the time I wasted, all of the chances I didn't take because of my stupid anxiety/depession (like I was afraid to do this and afraid to do that...), I wish I had tried different meds then. I'm afraid to do it now because my body has become so used to Dilantin that if I switch, who knows what the reactions would be. Dilantin has been great in preventing any seizures. It's just those dang side efffects!

 

[valeriedl]

I'm glad I'm not the only one who could be a weather forcaster because of my back! The changes in the season are the worst for me, those are usually the times where I can't move and just lay on the floor with a heating pad under me. In the long run my husband waits on me hand and foot when it gets that bad so I don't know if you consider that good or not?

I know that it's hard to try new meds, espically since you've been on that one for so long, but if the side effects are too much to handle then it maybe worth it in the long run.

I've been on severel different meds and have gone off of ones and gone on to others because of all the side effects and what they were doing to me. I think my fingers would get sore if I sat here and typed all of them!

I don't think I could handle one that would make me depressed. I'm a really happy go lucky person and it takes alot to get me down.

Since you've been on dilantian for that long of a time, there might be another med out there that you might want to try. Maybe give one or two a chance and if they arent working then go back on the dilantin. You never know, it might be worth it in the long run.

 

[msuder0583]

hey theresaa its great to see you here. its nice to have a fellow marylander here. i live in hagerstown, and i've had two brain surgeries at hopkins - both with jon weingart. he's a great neurosurgeon. the scar tissue is what gave my epilepsy unfortunately. yeah dilantin is what i was initially put on to control my seizures, but for me, i could not maintain a proper level in my blood stream so now im on three meds, and the side effects are killing me, so feel fortunate =) and gl

 

[TheresaA]

I've had 3 brain surgeries - 2 in Dallas, Tx at Parkland Hospital & the last one here at Hopkins. My neurosurgeon, Dr. Sumio Uematsu, also acted as my neurologist. He was brilliant & a really good guy. He died and his patients were given out to other neurologists. I got Dr. Lesser who lowered my dilantin dosage and, on my last visit to him, never took a blood test to check what the level was in my system. A couple months later, I had a major seizure - at Loyola where I worked. I was SO embarassed with all those Loyola students staring at me as the paramedics wheeled me out on the stretcher. They whisked me to Union Memorial Hospital where they took a blood test & saw that my Dilantin level was at 3 when it should've been around 10-15! Needless to say, I switched doctors & was seeing Dr. Howard Moses - but just found out that he retired. I only have my primary care doctor now, not any neurologist. Does Jon Weingart just see patients for operations? Can you recommend someone?

Thanks!

Theresa

 

[Nakamova]

Hi Theresa, welcome to CWE!

Sorry to hear about your problems with Dilantin. I was on Dilantin at first, but switched off of it because of the potential effects on the bones, and also on my gums. Long-term, Dilantin can also cause brain shrinkage and peripheral neuropathy, so make sure your docs are checking for any or all of those issues.

Best,
Nakamova

 

[TheresaA]

Hi Nakamova,

Thanks for writing. What drug are you taking now? I had one neurologist who wanted to switch me to Tegetrol, but another girl at Loyola was on that & she walked around like a complete zombie, like the drug took all signs of life from her. I was afraid of the side effects doing that to me so I stuck with Dilantin!

* Wouldn't it be kinda late to switch now, since I've been taking Dilantin for over 25 years and any bone damage or whatever else has already be done?

 

[msuder0583]

Im not sure if Dr. Weingart sees other patients or not other than those he operates on. And since I live in Hagerstown it would be hard to recommend a neurologist to you cause I'm about 45 minutes away. I see Samina Anwar and she is a pretty good neurologist. Dilantin can be a real pain in the ass, however there are other meds where you don't have to keep a blood level check on them, such as the ones I'm on which is good in some ways but on the bad side, the side effects are terrible. However, seeing as how just Dilantin is helping control your seizures you may only need one of the medications. I am on Lamictal, Topamax and Keppra. Initially when I had to be removed from Dilantin, I was just on Lamictal and it was great. Maybe you should consider that

 

[Nakamova]

I'm on Lamictal too Theresa, and it's worked for me -- I've been seizure-free for 3 years now. I haven't had to have any blood levels checked, and it seems to have more-or-less tolerable side effects. Not everyone has a positive experience on it of course, but the fact that you responded well to the first drug you were put on bodes well for any other med. The transition to Lamictal is done very slowly, so that can also help ease your brain and body's adjustment to a new med.

 

[epileric]

Hi Nakamova,

Thanks for writing. What drug are you taking now? I had one neurologist who wanted to switch me to Tegetrol, but another girl at Loyola was on that & she walked around like a complete zombie, like the drug took all signs of life from her. I was afraid of the side effects doing that to me so I stuck with Dilantin!

Hi TheresaA and Welcome. I"ve been on Tegretol since I was about 15 or 16 years old (I'm now 50). I've been on all the drugs used for partial seizures & tegretol has not only worked the best (though still not very good) but has the least side-effects for me.

The whole problem is that all anti-epileptic medications effect people differently in how well they work & their side-effects so you really won't know how one effects you until you try it, no matter how it effects someone else you know.

 

[TheresaA]

Thankss for your messages, but I'm just really scared about switching now, since Dilantin has kept me seizure-free for over 25 years (the only seizures I had were when doctors took me OFF of Dilantin & didn't switch me to anything else). I've just read about all of the other side effects for the other drugs and, at my age, I don't want to risk my hair falling out or having my license taken away - cuz I have to find a job, which is really hard nowadays and that would make it even harder!!!

 

[Ruth]

Welcome, TheresaA, others have probably told you that this forum was made by Bernard out of his love for Stacy. This love is felt throughout the whole forum.

I use to worry everytime I change medicines. After having epilepsy for 62 years now, I am getting use to it. I had Stevens-Johnson Syndrome with Dilantin. It is a very rare side effect.

You will find that all medicines have their side effects. You said that you had a head trauma. What was it?

 

[TheresaA]

As for my trauma... Back in 1984, I was a college senior who was brutally attacked and the entire left side of my skull was bashed in. I fell into a coma and was left for dead. First operation was a craniectomy where surgeons removed all of the broken pieces of my skull (and a lot of the pieces were embedded in my brain). I was in ICU & still in a coma on the 3rd day so surgeons checked my reflexes by pricking me with a pin: there was no reaction at all from my right arm & leg. They did a CAT scan & saw that there was an aneurysm in my left temporal lobe that was about to burst at any second, so they performed another operation, a left temporal lobectomy, where they removed the blood clot that was paralyzing my right side. After a month in the hospital in Dallas, I was flown back to Baltimore where I saw a neurosurgeon at Hopkins who performed a cranioplasty (the replacement of the left side of my skull with a resin plate) 9 months later, after the swelling in my brain had gone down (I can never have an MRI because the plate was sewn in with wire). I could go on & on with more details, but let me stop here. Even though life isn't a bed of roses having to put up with the side effects of Dilantin & all, at least Dilantin has kept me completely seizure-free since then. And God let me LIVE!!!

 

[Ruth]

You really went through a tough time. I am sorry that you went through that. Yes, God let you live!! That is important to have a medicine that was found to keep you seizure free.

Then why are they changing you from Dilantin to something else. What are they changing you to? Or, did I misunderstand that part?

 

[TheresaA]

Doctors aren't changing me: the neurologists at Hopkins insist that it has to be Dilantin, the name brand, not a generic like my primary care doctor wanted to give me. I don't want to switch. I'm too afraid to switch. It's just that some people (esp. my sisters) want me to switch to something that doesn't weaken the bones (bone weakness naturally comes with old age & Dilantin is going to add to it) or cause depression. I just have to make sure that I get plenty of calcium & vitamin D - and that I find a husband!!!!

 

[Nakamova]

Theresa -- Have you had a bone scan? It can reveal if you already have significant thinning or weakening of the bones. There is some disagreement over how effective the scan is for predicting future fractures, but it can take a snapshot for comparative purposes; if you have another scan in a few years it might show if thinning is progressing, and if so, at what rate.

Your docs are right to insist on the brand version of Dilantin versus the generic. Generics are allowed to contain less of the active ingredient, and can vary in that amount from batch to batch. People with seizure disorders are often sensitive to such variations, which makes the generics risky. Fortunately in the case of Dilantin the brand version isn't very expensive, so there's not a huge financial incentive to go to the generic.

 

[Cint]

Hi Theresa,

I'm so sorry to hear of the brain injury, but happy you survived! Also, it's great the seizures are under control with just one medication after such an ordeal--

First operation was a craniectomy where surgeons removed all of the broken pieces of my skull (and a lot of the pieces were embedded in my brain). They wheeled me to ICU & the doctors did their rounds. I was still in a coma on the 3rd day so they checked my reflexes by pricking my right arm & leg with a pin: nothing moved. They performed another operation, a left temporal lobectomy, where they removed the blood clot that had paralyzed my right side. I then saw a neurosurgeon at Hopkins who performed a cranioplasty (the replacement of the left side of my skull with a resin plate) ... I could just go on & on with more details, but let me stop here. Even though life isn't a bed of roses having to put up with the side effects of Dilantin & all, at least Dilantin has kept me seizure-free since then. And God let me LIVE!!!

My seizures started out of the blue at 22 years old. Due to my 1st TC seizure, I was in an accident and suffered 1st and 2nd degree burns, so spent 2 months in a hospital. They started me out on Dilantin, then added Tegretol and more drugs (have tried 11 meds) to no avail. Finally had a left temporal lobectomy and was seizure free for only 14 months. Then they came back worse then before, TC and CP seizures at home and in public. Yes, they are an embarrassment, but one learns to deal with it. Plus the awful depression that goes along with temporal lobe epilepsy!! :bigmouth: Have the VNS now and it has helped, plus take Keppra and Topamax, name brand only, and an anti-depressant.

Hope you stay seizure-free, but you do need your Dilantin levels checked periodically.

 

[TheresaA]

Theresa -- Have you had a bone scan? It can reveal if you already have significant thinning or weakening of the bones. There is some disagreement over how effective the scan is for predicting future fractures, but it can take a snapshot for comparative purposes; if you have another scan in a few years it might show if thinning is progressing, and if so, at what rate.

Your docs are right to insist on the brand version of Dilantin versus the generic. Generics are allowed to contain less of the active ingredient, and can vary in that amount from batch to batch. People with seizure disorders are often sensitive to such variations, which makes the generics risky. Fortunately in the case of Dilantin the brand version isn't very expensive, so there's not a huge financial incentive to go to the generic.

I haven't had a complete one yet, but Hopkins did a free semi-test a couple years ago: they pricked my ankle & could determine from that if I had osteo or not. They told me that I had the onset of it, that I need to take calcium supplements (their pharmacist recommended Citrical over Caltrate because it is absorbed directly in to your system, whereas the Caltrate pills have a lot of coating on 'em, so it takes awhile for them to dissolve). I had a job then with medical insurance that paid for it, but I don't have medical insurance now. But as soon as I get a job - with insurance - I will DEFINITELY have a complete bone density test to see how much the osteo has progressed....

 

[TheresaA]

Hi Theresa,

I'm so sorry to hear of the brain injury, but happy you survived! Also, it's great the seizures are under control with just one medication after such an ordeal--



My seizures started out of the blue at 22 years old. Due to my 1st TC seizure, I was in an accident and suffered 1st and 2nd degree burns, so spent 2 months in a hospital. They started me out on Dilantin, then added Tegretol and more drugs (have tried 11 meds) to no avail. Finally had a left temporal lobectomy and was seizure free for only 14 months. Then they came back worse then before, TC and CP seizures at home and in public. Yes, they are an embarrassment, but one learns to deal with it. Plus the awful depression that goes along with temporal lobe epilepsy!! :bigmouth: Have the VNS now and it has helped, plus take Keppra and Topamax, name brand only, and an anti-depressant.

Hope you stay seizure-free, but you do need your Dilantin levels checked periodically.

Oh my gosh, what type of accident did you have? Where did you get burned? I hope someone was there to help you right away. How long did it take for those burns to completely get better? It took me YEARS to learn how to walk & talk & read & write all over again. What caused your seizures to wait until you were 22? What did the doctors remove in the lobectomy? I'm sorry that none of the drugs you were on seem to have worked. I hope they FINALLY found the correct pills & dosage. Dilantin didn't work at all for you, huh? I'm lucky in that I've only been on Dilantin, which has worked for me all these years - I just have to deal with bone loss, anxiety and depression! At the beginning, my doctor didn't know exactly what dosage I should be on. For years, I had to get a blood test every 3 months. After he got the correct dosage, I only had to get blood tests done every 6 months, then every year. It has been a year now & I need to have one done - as soon as I get a job with insurance!!!