When Dr.'s don't agree - Advice Please..

[Dignan]

Hey all this is a long post...,

I am stuck between Dr.'s who disagree in the sense that I have had side effects ever since I switched off of Dilantin (first to Neurontin and now to Keppra) and my Dr's don't agree on how to handle the situation, leaving me alone to figure out what to do.

I'll be blunt. My problem is with sexual issues. I never had any trouble in this regard while I took Dilantin. However, since that ended, nothing has worked right in that department. Desire, feeling, anything.. mostly gone. I am male and this is killing me.

I have a neuro and an endocinologist saying I should go back to Dilantin since I felt better on that and didn't have the sexual issues while taking it. A neuro-endocrinologist says definitely do not go back to Dilantin because of the lesser side effect profile of Keppra (which we've all heard before) and because he recommends another method.

His method is to have me on testosterone shots to boost my Bioavailable Testosterone (even though I am in normal range on that and my Total Testosterone numbers are very very strong-- which is one reason my other docs disagree with him). However, this doc thinks that even though Bioavailable T is in the normal range, he says it is in the lower end of normal for someone like me. He also wants me to take Arimidex to control estradiol numbers once he gives me shots for Testosterone.

Now, I asked him: isn't it just easier to switch back to Dilantin rather than taking shots and another pill (Arimidex)and Keppra? He said yes, but his method would allow him to see exactly what it takes hormonally to make me feel better and then once that is established I could maybe go back to Dilantin, see if I feel better, and if I do, we'd know what to watch for hormone wise in the future.

I don't know what to do, other than I am worn out with drugs, and doctors, and definitely don't want to be some guinea pig.

SO, I thought I would throw it out to the good people on this site and see what any of you have to say. I am thinking of going with the recommendation of just going back to Dilantin and forgetting the rest of it, but what do you do when doctors totally disagree?

Thanks.

D:rock:

 

[qtowngirl]

You do what YOU are comfortable with. As soon as I got to your part about 'adding this pill after he adds that...' I was like WTF? Esp. when there's other medical professionals who disagree with him (if all of them agreed then that's one thing, may be the best decision for you, but if there's docs against what he advises then for me it would end right there). You can all sit and argue, I'll do what I feel comfortable waking up to every day. It's hard enough for us to live with E, we don't need to be guinea pigs as you so properly put it.

May I ask why you went off the Dilantin in the first place? How effective was it for your seizures?

Also I'm not sure about the 'lesser side effect profile' of Keppra. If I gathered up every post on it I've read in 15 months I'd say with certainty that more people have problems with it than not. Just my two cents but if Dilantin works for you call it a day and don't let anyone mess with your hormones. To me that would be scary shit.

 

[Dignan]

Dilantin was effective for my seizures. I've never had many seizures in the first place. I had a break through while on Dilantin that caused it be coupled with Neurontin for awhile. However, I took both of those for 7 years with no seizures. I had an aura or two in that time period but that was it.


The decision was made to get off of Dilantin based on some slight bone loss i experienced (slight osteopenia)and the overall feeling from Docs that it was a more dangerous drug long term.

 

[PFunk]

the lesser side effect profile of Keppra

You should ask your doc what they specifically mean by that. Keppra is relatively new, so they can't know what the long term side effects are. Dilantin on the other hand has been around forever.

If it makes you feel any better, Trileptal took away some of my mojo. It also did a good job of controlling my SP's but low salt levels ended that.

Now I'm on both Keppra and Dilantin.

 

[qtowngirl]

If you took them both for seven years with no seizures then how about being on just Neurontin? True I have also heard about Dilantin and long-term, and bone loss is a no-no, so if there was no breakthroughs on Neurontin or sexual loss, maybe worth a shot?
As a woman I've had this happen too, when I first went on carbamazepine. Ick, for better part of a year I would have rather done anything else. But got lucky, it came back and nothing a problem since. However as a guy I can't imagine how much harder it would be to deal with, so stressful. And as stress causes seizures... well Keppra may just not be the winner here.

 

[PFunk]

However as a guy I can't imagine how much harder it would be to deal with

Don’t you mean how much “softer” it is to deal with…. :roflmao:

And that should take care of your immature stressor for the day Q

 

[qtowngirl]

yeah... i thought of that when i was typing it... but i knew the men would know what i meant.

and please, you'll have to do a lot better than that for immature - i live with my boyfriend and three teenage stepkids, two of which are boys.
you did however get a good eye roll.

 

[PFunk]

MY GOD! You live in a hornets’ nest of immaturity. Good luck with that one!

Remember, maturity is one step closer to death.. that’s what I tell my wife.

 

[acpollard2010]

Ladies enough with maturity in this area im the total opposite I couldnt imagine not wanting to,but if my health is on the line would go with just neuro opinion unless he is the one sayin it.then find a new dr

 

[qtowngirl]

Yes P let's get back to business.
Well all I can say is that I was prepared for my new E doc (epileptologist) to suggest Keppra, which she did right off the bat, and I came back with 'no, not a chance, not ever, no thank you. moving on...'
Just heard too many nasties about it. IMO it's one thing for a drug to have side effects on bones, liver, etc., but when it starts F'ing with your head and making you hurt those around you with mean comments and rage, I don't think so. But, that's just MO, as Neil said in another thread, we all have our own epilepsy and only we can decide what's best for us.
Good luck on this Dignan, I truly wish you the best outcome (and your life with desire back as well - we all need that I mean what more can this 'insert your word here' take from us?).

 

[PFunk]

Dilantin was effective for my seizures. I've never had many seizures in the first place. I had a break through while on Dilantin that caused it be coupled with Neurontin for awhile. However, I took both of those for 7 years with no seizures. I had an aura or two in that time period but that was it.
The decision was made to get off of Dilantin based on some slight bone loss i experienced (slight osteopenia)and the overall feeling from Docs that it was a more dangerous drug long term.

One thing I know from reading this forum over the years is that neurologists are mostly make educated guess based off their experience. My epileptologist told me there isn’t enough research and a lot of the time it is trial and error. Neil is right when he says, only you know your epilepsy best. I can say if I only had two simple partials in 7 years, I would be the happiest person alive and would be hard pressed to change anything. The medication game sucks. Best of luck, follow your gut!!

Ladies enough

Apparently I need to tell my wife she's a lesbian.

 

[acpollard2010]

Sorry bro never assume my bad

 

[PFunk]

Haha, no worries man.. but I’m still going to tell my wife she’s a lesbian. That will spice up my Friday night!

 

[qtowngirl]

Okay okay gentlemen, pm each other about lesbians if you want, this is Dignan's thread and his concern. Ha acpollard now it's my turn... Ladies enough!!

 

[PFunk]

Thanks mom

 

[Dignan]

Keppra is relatively new, so they can't know what the long term side effects are. Dilantin on the other hand has been around forever.

I said the same thing to the Neuro-endocrinologist. He claimed that with Dilantin back in the day they didn't know what all to look for and it took decades to figure out where all the effects could hit someone. He says now, with newer drugs like Keppra, that they know more and so it isn't strictly true that they don't know what side effects lay ahead since they are more thorough in their testing of new drugs.

But, I'm with you.. I think there is no guarantee that in 20 years they will discover that long term use of Keppra causes all sorts of issues they don't know about now.

 

[Dignan]

If you took them both for seven years with no seizures then how about being on just Neurontin? True I have also heard about Dilantin and long-term, and bone loss is a no-no, so if there was no breakthroughs on Neurontin or sexual loss, maybe worth a shot?

Actually, when I tapered off Dilantin, I stayed on the Neurontin alone for a year. But that is when the sexual effects started.. as I tapered off of Dilantin. So, I felt those effects the whole year I was on Neurontin alone (along with being dizzy and generally feeling like crap). Then I had a seizure a year later and was moved off of Neurontin and on to Keppra.

During the transition, when Neurontin was ended, the sexual effects improved somewhat for a month, but after I settled in on my daily Keppra dose everything went south again..

So, my theory (which no docs like) is that Neurontin and Keppra have both caused this problem (even though I never took them together), and that it was masked by Dilantin when I took that.

Also, on your comment on the bone loss... If I have to choose between not having a sex life or a loss of bone density, then I choose to loose bone density.

 

[Dignan]

in this area im the total opposite I couldnt imagine not wanting to,but if my health is on the line would go with just neuro opinion unless he is the one sayin it.then find a new dr

I don't know if you are on this site because you have E or because a family member does, but believe me, if it is for yourself know this: I had no problems for nearly 20 years until I switched drugs. If you find yourself on the wrong drug for you, this can happen to anyone.

Also, the neuro opinion is just that. When I have brought up these other issues, he reminds me that he is a neurologist and not a hormone expert (endocrinologist) or a specialist in reproductive issues. As you can imagine, that doesn't inspire confidence which is why I sought out the other docs.

 

[PFunk]

I’m just going to throw this out there. Do you think your Neuro has any incentive to promote this Testosterone Treatment? Maybe a drug company is making “worth his while”. It’s a tough call…. I’m still surprised he just doesn’t have you back on the dilantin with a calcium supplement, since you were doing so well. Let us know what you end up deciding.

If I have to choose between not having a sex life or a loss of bone density, then I choose to loose bone density.

Amen! :banana:

 

[qtowngirl]

Hmmm... that's an interesting point Funk, I would have never thought of that.
God let's hope that's not the case! And I think you're right - back on Dilantin (as little as required) cuz it worked so good, and load up on the calcium.
I take calcium (was taking 1000mg/day) but when I discussed long-term Carbamazepine use and bone loss with my doc she suggested doubling it - 2000/day. That's a lot of pills, I'm working on it!
Either way Dignan it can't hurt, calicum is a smart thing when on AED's, and if Dilantin worked, well, sounds like the simplest solution.