Long term effects of dilantin

[RanMan]

I've been on dilantin for 26 years now and although I haven't had any stomach pain from it, I have had other symptoms. You should talk to your Doc. about this and maybe he can find another med for you.(I'm not in the medical profession so I'm only going on past experiences)

It is documented that it is hard on the liver, causes abnormal hair growth (where you don't want it), and/or overgrowth or softening of the gums.

I also want to say that I've been on this drug for 26 yrs and I have my blood monitored weekly and my liver is in good shape.
I see the dentist every 3 months(because of the dilantin he wants to see me every 3 mos.) and my gums show no sign of dilantin use.

I do however have unwanted hair growth (legs, arms, chest, back,) but bald on the head. (I don't know if thats hereditary or from the drug)My arms and legs are like Robin Williams.

I've noticed other side effects such as stigma (sp) (eyes), paranoia, profuse sweating, poor co-ordination and bad gait, erectile dysfunction, to name a few.
I also take pheonobarb and the only effect I get from that is drowsieness and getting tired.

I also have been concerned about long term effects that the dilantin would have on my body.

When I discussed this with my neurologist he said there was no documented proof that it caused any long term effects. (I don't believe him though)

He also told me that after being on it for so long, if I were to stop taking it or change meds, I would run the risk of lower brain stem damage and/or my seizures could come back even worse.

My seizures have been under control for 26 years so I figure if it's not broke. don't fix it.
I also have Ulcerative Colitis (similar to CD)

It's a documented fact that people who have seizure conditions are the most likely people to develope some sort of GI or bowel disorder. Scientists THINK it's brought on by stress. (As documented in the Canadian Medical Journal) They both are asually diagnosed around the same time.

I'm also on other meds for my EP and UC that work with the dilantin so as a result, I'm probably not taking as much dilantin as you. I also take a mood stabilizer "Celexa" I just started that a month ago.

My meds and doseage are listed at the bottom under my signature.


The additional stress causes the adrenal gland to produce a lot more adrenalin witch is an acid, it eats through the lining of the stomach and bowel and also causes more nerve mis fires in the brain. (check with your Doctor,this is only my experience)

Randy

 

[Bernard]

Thanks for sharing your experience Randy. It seems like just about every AED has serious long term side effects.

Our goal with Stacy is to get her back to a seizure free state sans meds. For the short term, Dilantin is necessary. The trade-off of long term damage to the liver is easily outweighed by the risk of a serious injury from falling during a TC. Stacy has already been to the ER once with her head (scalp) split open (from a window sill) and her two front teeth (top) busted on a door frame (requiring an emergency root canal and caps).

 

[Elisa]

I have been on Dilantin for close to 30 years, the big thing that I worry about is my liver, bones. I spent the last two years trying to get myself off of it, went thought every med on the market. None of them work like Dilantin does, and so I'm back to square one. But, I have to say that after spending the last two years on and off of meds, Dilantin has the very least side effects.
My memory stinks, but then again I had a good part of my RTL removed 12 years ago, so that doesn't help either.

 

[Bernard]

Milk Thistle (an herb available at any decent vitamin shop) is supposed to be good for the liver, although studies on the subject appear to be inadequate in drawing conclusions:

Clinical efficacy of milk thistle is not clearly established. Interpretation of the evidence is hampered by poor study methods and/or poor quality of reporting in publications. Problems in study design include heterogeneity in etiology and extent of liver disease, small sample sizes, and variation in formulation, dosing, and duration of milk thistle therapy. Possible benefit has been shown most frequently, but not consistently, for improvement in aminotransferases and liver function tests are overwhelmingly the most common outcome measure studied. Survival and other clinical outcome measures have been studied least often, with both positive and negative findings. Available evidence is not sufficient to suggest whether milk thistle may be more effective for some liver diseases than others or if effectiveness might be related to duration of therapy or chronicity and severity of liver disease. Regarding adverse effects, little evidence is available regarding causality, but available evidence does suggest that milk thistle is associated with few, and generally minor, adverse effects.

Milk Thistle: Effects on Liver Disease and Cirrhosis and Clinical Adverse Effects

 

[ellgee]

Dilantin

I have a friend who is currently going into liver failure, sadly haven't been successful about taking her off the dilantin, even though she is on multiple other AEDs, just reducing the dilantin slightly brings on the breakthroughs.

I suggest that anyone who is on Dilantin to discuss this with their physcian, there are many AEDs on the market now with less side effects and less long term effects.

Dilantin also gives off a distintive smell - most folks think it's a form of bad breath, but it's kinda like certain spices, it's emitted out of the pores of the skin.

 

[Nakamova]

I am on 200mg Dilantin now. My current neurologist never prescribes Dilantin, and would like me to switch to a different drug because the Dilantin can cause not only liver problems, but also peripheral neuropathy (with loss of sensation in hands and feet) and brain shrinkage. Other newer AEDs do not have those side effects, although they seem to have plenty of other ones...

 

[Jake]

I have been on Dilantin & Phenobarbital for 37 years. These meds have for the most part controlled my seizures.

I suffer from peripheral neuropathy. It began in the bottom of my feet and has progressed up past my waist. My legs feel like huge weights with reduced feeling and it's getting harder to walk. My feet get completly numb and sometimes I trip myself.

Other side effects include memory, balance and speech problems, and I'm always very tired. I know I should change to some other drugs but since I am seizure free I don't want to risk having another seizure and losing my drivers license.

Jake

 

[Bernard]

Hi Jake, welcome to the forum.

I hate it when I sleep on my side and wake up with my arm feeling like a dead weight. I can't imagine what it would be like to have that with both feet/legs frequently. I wonder if that problem would go away if you were weaned off of your current meds.

 

[Jake]

Hi Bernard and thanks for welcome.

Some doctors believe the neuropaty would go away in 18-24 months. Other I have talked to disagree. It is annoying but it beats having seizures.

Jake

 

[lindy]

You're lucky you don't have hyperplastic gingivitis. Nothing like having your gums stripped. Another problem I had with Dilantin when I was on it (which you won't deal with) was premature menopause. I knew someone who had a hairy tongue from the stuff.

 

[Jake]

I do have gingivitis but it's not serious. My gums are a little swollen and bleed some when I brush them. Hopefully it won't get to the point that periodontal care is necessary. Did you have to have surgery for it?

Hairy tongue huh :shock: . Never heard of that one. Why is it the hair never grows where you need it, like on top my head. :lol:

Jake

 

[lindy]

Only went through the surgery once - thank heavens, the gingivitis goes away as soon as the Dilantin is gone - and it was just awful. Couldn't eat any solid foods for two weeks. The dentist keeps telling me that I have residual damage behind my molars but I think that it's just the scar tissue from really lousy wisdom teeth extractions.

 

[Jake]

Hi Lindy,

I assume you stopped taking Dilantin. If so, what were you given in its place and did you have any seizures during or after the change. I'm curious because I should change to something else with fewer side effects, if there is such a thing.

Jake

 

[RanMan]

I guess I'm one of the lucky ones. I have been seeing the dentist every 3 months for about 26 yrs due to the long term use of dilantin.
I have no signs of gingivitis or overgrowth of the gums.
I also get a liver enzyme test (special blood test) done every 6 months to check my liver enzyme reading and so far, everything is normal.

I do however have other side affects as I've mentioned in the first post.

Randy

 

[lindy]

Well, Jake, I was on a couple of other AEDs (primarily Mysoline and Depakote) after Dilantin and then I gave up. My seizures were getting more violent and more frequent and the postictal horror was more severe and lasting longer as time went on no matter what was done drug wise. The neuro finally said that my seizures were intractable and recommended surgery. I looked into it and decided that it wasn't for me and, in disgust, gave up on the drugs all together. After all, if I was going to be having partials and grand mals all of the time, what difference did it make? That was in May 2000 and I started to take vitamins and supplements instead. I can't even remember when my last partial was and, since I started the alternative, I have only had three grand mals. The longest I have gone is 23 months seizure free and, at this point, it has been a week shy of 18 months since the last one. On top of being almost totally seizure free, when I do have a seizure, there is no postictal spell at all. I literally get up off of the ground and go back to whatever I was doing. Sure beats the old migraine/exhaustion/inability to speak trouble that would last 7-8 days!

 

[Jake]

Randy,

I agree with you regarding long-term side effects. Following are some long-term symptoms that I am aware.

Dyskinesia, - Although rare, Dilantin induced dyskinesias have been a proven long term side effect. It is an impairment in the ability to control movements, characterized by spasmodic or repetitive motions or lack of coordination.

peripheral polyneuropathy - I can personally vouch for this one. It consists of various sensory sensations, including muscle weakness and atrophy, pain, numbness, hands/feet feeling cold & pins & needle type sensation.

Cerebellar atrophy - From what I have read cerebellar atrophy may also occur after decades of phenytoin therapy although scientists are divided as to whether it is caused from the seizures or the Dilantin.

Cognitive effects - Long-term use of Dilantin has the most significant cognitive effects, including memory and performance deficits, of the commonly used anticonvulsants.

osteoporosis - Osteoporosis is another long term problem.

I don't know how your doctor could say there was no documented proof that it caused any long term effects. There is proof.

Take care

Jake

 

[Wolf82]

I take 400 mg of Dilantin a day what side effects do you suffer? I suffer from being lightheaded, insomnia, and I sometimes see and hear things that are not there.

Plus sometimes it sounds like there a angry bee stuck in my ear and the buzzing drives me nuts anyone else hear have those problems?

onder:

 

[RobinN]

Wolf 82 - I see that the last post was in 2005. I don't think you should expect a response back from many of these members.
Others might be along to discuss it. I have no knowledge about it. However you can see what others have said about the ringing in the ear here:
http://www.coping-with-epilepsy.com/forums/f23/weird-question-2153/
http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-tinnitus-2333/
http://www.coping-with-epilepsy.com/forums/f23/there-cure-epilepsy-882/index2.html#post9142

 

[brain]

It sounds to me more of PHENO than Dilantin ...

HOWEVER - the SIDE EFFECT FOR
PHENOBARBITAL IS OF INTEREST:

PHENOBARBITAL - from Drugs.com

Side Effects of This Medicine

Along with its needed effects, a medicine may cause some unwanted effects. [Although not all of these side effects may occur, if they do occur they may need medical attention.

Check with your doctor immediately if any of the following side effects occur:

Rare

Bleeding sores on lips; chest pain; fever; muscle or joint pain; red, thickened, or scaly skin; skin rash or hives; sores, ulcers, or white spots in mouth (painful); sore throat and/or fever; swelling of eyelids, face, or lips; wheezing or tightness in chest

Also, check with your doctor as soon as possible if any of the following side effects occur:

Less common

Confusion; mental depression; unusual excitement

Rare

Hallucinations (seeing, hearing, or feeling things that are not there); unusual bleeding or bruising; unusual tiredness or weakness

With long-term or chronic use

Bone pain, tenderness, or aching; loss of appetite; muscle weakness; weight loss (unusual); yellow eyes or skin

Symptoms of overdose

Confusion (severe); decrease in or loss of reflexes; drowsiness (severe); fever; irritability (continuing); low body temperature; poor judgment; shortness of breath or slow or troubled breathing; slow heartbeat; slurred speech; staggering; trouble in sleeping; unusual movements of the eyes; weakness (severe)

Other side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. However, check with your doctor if any of the following side effects continue or are bothersome:

More common

Clumsiness or unsteadiness; dizziness or lightheadedness; drowsiness; ``hangover'' effect

Less common

Anxiety or nervousness; constipation; feeling faint; headache; irritability; nausea or vomiting; nightmares or trouble in sleeping

For very ill patients:

* Confusion, mental depression, and unusual excitement may be more likely to occur in very ill patients

 

[brain]

I just realized that Wolf's posting
wasn't pertaining to all those AED's.
My apologies ... but nonetheless,
I am leaving my post stand as is,
for those who are on:

PHENOBARBITAL

So they can review the side effects.

=========================

WOLF - If YOU are experiencing
any SIDE EFFECTS from DILANTIN:

1) You should consult your Doctor
2) You should have your blood (lab)
work-up done to have your level
checked to make sure you are in
the therapeutic range.
3) You should consult your Doctor
about what you are experiencing:
You may need to have the meds
adjusted or be put on something
else ~ You might be experiencing
AURA(S)!

See CWE's POLL:

Experience AURA or AURAS?