Male side effects from dilantin

RanMan

Too Much Experience with Epilepsy
Messages
408
Reaction score
0
Points
81
Hi everyone,
Just out of curiosity, has anyone out there been experiencing obvious side effects from the use of dilantin?

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 25 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 disfunction, to name a few.
I also take pheonobarb and the only effect I get from that is drowsieness and getting tired.

Randy (Ontario)
 

super

New
Messages
39
Reaction score
0
Points
0
Hi everyone,
Just out of curiosity, has anyone out there been experiencing obvious side effects from the use of dilantin?

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 25 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 disfunction, to name a few.
I also take pheonobarb and the only effect I get from that is drowsieness and getting tired.

Randy (Ontario)
Dilantin - been on this drug for over 40 years. Found to be affected by other meds (eg anti inflammatories) and alcohol. Gums unaffected but have found may cause slowness of thinking, invariably fall to sleep at cinema put that down to Dilantin - also constipation. Currently taking 360 mg Dilantin (previously 500mg) and 3000mg Keppra per day.
 

BuckeyeFan

Grandpa
Messages
1,907
Reaction score
0
Points
0
I was on Dilantin for 22 years and for the last 4 years I am on Phenytek which is the same thing, only time released. I now alternate 500 and 600 mg each day to stay at a theraputic level.

My symptoms are mostly lack of focus/concentration, poor memory, some staring spells, and a lack of ambition/drive. I may be having some sort of absence sz, but I think it is either one of my meds or the long term impact of E. They all can produce the same issues.

Generally OK with everything else. Not very coordinated and I do get fatigued easily even when I have had plenty of sleep.

Don't know if it is related, but I had some problems with low iron, thyroid, and B12 a couple of years ago and spent two nights at the hospital. Otherwise, I am usually at least functional.

I also take 2000 mg of Keppra each day. My T/Cs are controlled at this time.
 

mouse

New
Messages
11
Reaction score
0
Points
0
My husband has been having big seizure problems for a year now, it seems fairly well controlled...for now. He is on dilantin, keppra, primidone, epival, clobazam. Two prostate drugs, and for depression, celexa and a low dose of zyprexa.

The only hair growth I noticed was that the nearly invisible fuzz most of us have on our faces was getting more visible on his forehead.

For other symptoms, he does have erectile dysfunction, coordination problems, fatigue, memory/cognition problems, and tremors, but he has an underlying white matter disease (lesions) which remains undiagnosed as well as a little brain damage from hypoxia...all of which have caused a year of hospitalization.

So it is good to be able to relate some of the symptoms to drugs rather than the disease and brain injury, or to understand that the drugs may be compounding some of the more permanent problems.

He is currently being tapered off the dilantin, which is good because every new doctor who sees him does blood levels, sees dilantin as sub-therapeutic and jacks up the dose. Then he turns into a zombie, talks nonsense, is too weak to do physio, and has seizures. It's hard to babysit doctors. Can't they talk to each other or call the neurologists who know what's going on? Or call me?

After much searching, we now have a family doctor, and he is in "complex care" which gets him a regular doctor instead of the treat-of-the-week. We're in ontario too. Hard to get any access to one's own health records.

My own question is this: What are the symptoms we should expect in tapering off dilantin? He seems more fatigued than usual, and feels ill every evening about 20 minutes after eating supper.

It's so hard to sort out symptoms, is it drugs or the disease or an infection, or hospital food or just being tired?
 

super

New
Messages
39
Reaction score
0
Points
0
tapering off dilantin

My experience is this.

Last December put on Keppra by Neurorologist; noticed severe side effects and too quickly reduced Dilantin resulting in severe Tonic Clonic seizure. Whilst on lower dose of Dilantin felt great, clearer thinking, more energy, not that feeling of tiredness all the time.

Have since gone back to previous dose of Dilantin and strictly following Neurologist's instructions. Must not reduce any of this medication too quickly otherwise dangerous.

The symptoms you describe are exactly what I experienced with Keppra, however there has been some improvement recently.
 
Last edited:

BuckeyeFan

Grandpa
Messages
1,907
Reaction score
0
Points
0
The biggest danger I have ever read about coming off Dilantin is coming off too quickly which can trigger seizures. Dilantin (and most other AEDs) needs to be tapered off slowly.

I have been on dilantin for 26 years and keppra for 4 years. Most of the conditions you noted sound familiar except that he has much more to deal with including those lesions.

Try the website drugs.com. It has a tab where you can list all of his medications, vitamins, and supplements. It will then check for any interactions between the meds. Many times side effects from one drug can be multiplied when taken with another drug.

Good luck.
 

mouse

New
Messages
11
Reaction score
0
Points
0
Yikes!

I checked drugs .com and there is a lot going on between Dilantin and just about everything. Again, giving me hope that what seems like brain injury will become less when the Dilantin is finished.

Big stuff like having ataxia and problems with mental alertness. I guess he started out with a cocktail of drugs just to be able to get him out of the coma that it's possible a lot of problems are due to the drugs.

I shouldn't anticipate him getting a whole lot better, but there is always hope. And fear!

The tapering of Dilantin seems to be going well, I think we are only in week 1 of the neurologist's four week schedule. It does make me paranoid since it took so long to find the right combination of drugs to keep from having 20 minute seizures (scary).

The balance of drugs and their efficacy seems to be so precarious. I guess circumstances change. So many questions...if treating for an auto-immune problem is the right track, will it reduce lesions and reduce the chance of seizure? No one can answer that stuff, it's all IF this, then what?
 

NaderH

New
Messages
22
Reaction score
0
Points
0
Do you happen to know why dilantin causes weight loss for many people? If so, how can this be prevented? I am on dilantin and weigh less than most people of my height. Eating more makes no difference other than keeping my weight stable.
 

mouse

New
Messages
11
Reaction score
0
Points
0
Are you continuously losing weight, or has the loss plateaued?

... My husband was tall and skinny to start with, and like every problem he's got, we don't know if the weight loss is disease or drug related. He's been so very sick, I know that is a lot of the weight problem, but dilantin could be compounding it.

Having said that, he did manage to drag his weight up from 127 to 150 (before further infections made it drop again). His tactic was to drink a LOT of "ensure" (meal replacement drinks) in addition to still eating his regular meals and asking for extras. He's back to 140 and working on it.

He is in the hospital, so we dodn't have to pay for the ensure, but even if you could add one or two a day.... They also make Ensure PLUS with even more calories. The PLUS has fewer flavours, so it may get boring more quickly. Not that it's a joy to drink no matter how they flavour it!

That's what the hospital uses, and what the pharmacy suggested. Beyond that, have you considered some of the bulk up stuff you can get at nutrition stores? Maybe make blender drinks with high-fat yogurt and a pile of fruit? Whatever you do, try to keep it healthy...you can be skinny and a jogger, but if you eat crap, you can still be in jeopardy of heart/stroke problems.

I would be interested in learning what does work for you. Think hefty!
 

BuckeyeFan

Grandpa
Messages
1,907
Reaction score
0
Points
0
My experience. I have been on Dilantin coming up on 27 years now and have never had weight loss problems. I don't think that I have ever read of that as a side effect.

I am not saying to dismiss this completely, however I doubt that the Dilantin is the direct cause and I would look at other reasons.

:twocents:
 

super

New
Messages
39
Reaction score
0
Points
0
My experience. I have been on Dilantin coming up on 27 years now and have never had weight loss problems. I don't think that I have ever read of that as a side effect.

I am not saying to dismiss this completely, however I doubt that the Dilantin is the direct cause and I would look at other reasons.

:twocents:
I have been on dilantin for 45 years and experienced no weight loss problems, found to be an effective medication with minimal side effects. That is me, but others may have a different experience.
 

Mr. Pibb

New
Messages
92
Reaction score
0
Points
0
Dilantin

Seems to be the one medication that has the least amount of side effects. It seems to be the ones that go along with that has always given me problems, mysoline was not to bad until one day and then it started mess'in with my liver levels not always bad but enough to get me to change and not take mysoline ever again
 
Top