Neurologist is wrong but shoud I up the dose myself

[Nick88]

I'm taking, among other things, phenytoin 325mg daily. I haven't mentioned anything else because I think the phenytoin is doing most of the work and I don't want to confuse matters. The range for phenytoin blood levels is 40-80.

Anyway, recently E has been getting quite a lot worse. I've had quite a few seizures lasting 3 minutes and more (quite a lot for me) most of my seizures are tonic clonic except for when I have some smaller ones next morning or something. So yeah basically, its got pretty bad.

I want to put the phenytoin up just by 25mg but the neurologist won't let me. I had one blood test that put me at 70 something so he says its too risky to put it up.

The thing is, I also had at least four other blood tests at my request that put me it the 50s and 60s. I've talked to his nurse and to my GP but they all just refer back to the neuros letter and he gos only on the one blood that was high.

I've put the dose up myself because I'm sick of the seizures. Only time will tell if it makes a difference.

But should I call the nurse? or my GP? or cut the dose back? You got any advice basically?

 

[Penny]

Become a nuerologist so you can do what you want, until then I wouldn't think I was the one that was right without the degree.

 

[arnie]

I don't think anyone here is in any position to recommend anything to you except to work with your docs. Even if I were the best neurologist in the world it would be foolish to tell you what to do with one med when you are taking others along with it that you are not talking about. There are lots of interactions to take into account, as well as the long-term effects of Dilantin, of which there are many. If you've read some of my other posts you will know that I'm not always a big fan of doctors, and don't always think they know what they are doing, but deciding on a medication regimen by taking a poll on an online forum is a bad way to make a decision about something as serious as this. If you're that unsure of what you're doing, then don't do it. My advice is to work with the docs, maybe get some other blood levels done, tell them all of your concerns and then work with them on any med changes.
As for your conflicting Dilantin levels, it could be because you got a peak level done once, and trough levels done on some of the others. There are other factors that could play into the level variations as well, including interactions with whatever other meds you're taking and other things in your life that you may not be aware of.
Work with the docs.
Best if luck,

Carry on!

 

[bighealey]

I agree that you should take this up with your Doctor.

 

[Nick88]

Become a nuerologist so you can do what you want, until then I wouldn't think I was the one that was right without the degree.

I like to think that the fact that I'm the one who is actually HAVING these seizures, and actually TAKING this medication counts for something.

EDIT: Also, I just want to say I have had epilepsy since I was very young, 7 years old, and have been taking phenytoin since about 9. So I think I know how it works with me.

 

[Belinda5000]

Nick,
you should talk with your neuro about this.I wouldn't try to tell you what to do with your meds.

Only another neuro would be qualified to change your meds not you.

I'm tired of my seizures and I tried increasing my levels once with my Topamax and my neuro saw me and he said I was toxic.

I've had E since I was two years old and I'm 52.

 

[epileric]

I like to think that the fact that I'm the one who is actually HAVING these seizures, and actually TAKING this medication counts for something.

I think that makes us experts on our experiences with seizures and experiences with medications but we have to be careful not to assume we know more about neurology or the chemistry and biology of medications because we have seizures.

Dunning–Kruger effect

 

[arnie]

I like to think that the fact that I'm the one who is actually HAVING these seizures, and actually TAKING this medication counts for something.

It actually counts for very little. Unless you have lots of information and really good data to back it up it's mostly a gut feeling, which might or might not be right. By extension, you might think your auto mechanic is wrong in a diagnosis of your car's problems on the basis that it's your car and you're the one driving it, even if you don't know much about auto mechanics. Also, the fact that you even wanted our opinions without telling us all the other meds you are taking shows a limited understanding of medications and their interactions.
I know I'm being pretty blunt here, but you asked for our opinions and you're getting them loud and clear. If you are going to dispute what we say, try to convince us that you are right, and you only wanted support for your decision there was no reason to ask.

EDIT: Even if you have been taking it for a long time, it really doesn't make you an expert any more than having driven a car for a long time makes you a qualified mechanic. I like epileric's link to the Dunning-Kruger effect. I had never heard of that but I have seen it a lot throughout my life, and it seems like I'm seeing it here.

 

[Nick88]

I've been toxic before. Doesn't make much difference because I cant drive or anything anyway. All that happens is I walk into bushes and stuff.

I don't think all you Americans get it; you guys can just phone your dr whenever and make an appointment for next week. I'm on the NHS -- I might be able to call the ep nurse on Monday because she gave me her direct line but I wouldn't be able to get the neurologist. Even if I did I probably wouldn't get an appointment until around March. I think I'm still waiting for one that I made back in December, I cant remember its been so long.

 

[Nick88]

If you are going to dispute what we say, try to convince us that you are right, and you only wanted support for your decision there was no reason to ask.

Did you read the post I was responding to with that "... counts for something post"? It was quite rude and unnecessary and I felt I had to respond to it.

I am not just trying to convince people I'm right, (although, at the moment I believe I am right). I asked for advice, I will take the advice offered me and I will make an informed decision.

 

[arnie]

Maybe Penny's post did come across as a little snarkey, and maybe it is difficult to get an appointment to see your doc, which really is too bad and not good patient care at all, but none of that changes what any of us are saying.

Best of luck to you, and I don't mean that in a sarcastic way at all.

 

[Belinda5000]

Nick,

you think your the only one who has times when there having seizures not quite.

I've had plenty of times when my sz's had gone crazy and I'm refractoy/intractable. I wouldn't be leaving my house because I was having so many sz's and going down so many times and I was having tonic clonic-grandmal sz's busting my head open and the increase in my medication wasn't doing anygood and my neuro was at his wits end at what to do for me.

 

[Nick88]

Nick,

you think your the only one who has times when there having seizures not quite.

I've had plenty of times when my sz's had gone crazy and I'm refractoy/intractable. I wouldn't be leaving my house because I was having so many sz's and going down so many times and I was having tonic clonic-grandmal sz's busting my head open and the increase in my medication wasn't doing anygood and my neuro was at his wits end at what to do for me.

Of course I don't think that, why would you even say that?

I thought that the whole purpose of these forums was that those of us with a SHARED experience could meet online and share knowledge, support and encourage one another. That's not what I'm getting from it at all, in fact, the opposite. Excuse me if I mis interpreted your post but what I got out of it was "My seizures are worse than your seizures so you have no right to complain." -- quite childish I think, and I fail to see the point in your post.

So I'm going to delete my account now if that's possible. Thanks to everyone who actually HAS helped me (sorry can't remember all the names).

 

[Belinda5000]

Nick,
what I'm saying is not who has the worse sz's I don't care.
I mean everyone on this forum had had bad times with there sz's and you don't need to mess with your meds I learned my lesson the hard way.

 

[Matthew74]

Sorry guys, but some of you just treated Nick very poorly.

The problem isn't that you told him to check with his doctor first, or that you disagreed with him. That's totally legitimate, and can be done in a respectful and caring manner. The problem was that you began attacking him personally. Basically you told him he was a stuck up ignorant ass. That's not ok.

Now, if you were Nick, and you read some of those things, how would you feel? Would you feel like you had received some good advice and want to follow it? I don't think so.

His question was a perfectly reasonable one. He tried to get help from his doctor and nurses first. They didn't help and don't seem to have given him any convincing reasons for refusing to up the dose. He was obviously looking for moral support in his decision. He was also right to ask the question. He showed humility in questioning his own discernment, as well as in putting his actions up for criticism.

 

[Dolores]

Nick, In case you are still checking the forums I just wanted to say that I think you should inform your doctor that you upped your dosage. You should also get blood-levels done to verify you aren't overdosing. I'm on Dilantin (name-brand phenytoin) and I know from experience that overdosing is not fun and can be very dangerous if it goes too high. Do all you can to research the effects of your particular drug. I don't know if it will help you but the site www.dailymeds.com is run by the NIH and has information on all the various forms of a drug both brand name and by different generic suppliers. But it is limited to drugs available here in the US.

I have a similar but different situation with Dilantin. I tend to overdose every few years - I can tell because my balance suddenly is way off. So I get a blood test to confirm and then, depending on the severity and how soon I can see my doctor, I may decrease my dosage based on the information I've recorded over the past 15+ years regarding blood levels and dilantin dosages. And I contact my doctor as soon as possible. Every time he has told me that I did the correct thing. He and I have a great relationship and make decisions together as to my drugs.

I have also on one occasion increased my phenobarbital. It's a longish story I won't get into but the result was very positive. I discovered that a slight increase in phenobarbital had a major effect on my ability to focus and remain calm. I only did the test for 3 days after which I went to my doctor and explained why I did what I did and the result. He told me he was amazed that I was able to figure out this connection and he now writes my prescription for the higher dosage.

Understand that you are treating yourself like a guinea pig and will have to accept that whatever happens, you are the one responsible and not your doctor. Therefor you have to take precautions like monitoring your blood-levels, your mood and all other things. You should also have your General Practitioner monitor your liver etc to see if any damage is occurring.

Best of luck, Dolores

 

[cazzy12]

I having problems with site so put this I hope in right place
last week I had bad bouble vision it was so bad went to doc who sent me to stroke unit(needless to say scared shit out of me)I saw stroke dr who was very sure I had minor stroke but brain scan showed otherwise...myself thinks its mucular degeneration but they say no which leaves my epilepsy meds lamatical clobazam I take zoloidem on top I also slip odd nytol in aswell but have been doing this for years,common sense tells me it wrong but the question is after all these years could my vision be due to this....I get so desperate for sleep I do abuse the clobzam and zolpidem but as said doing it for years..any help would be valuable

 

[kaelieh]

I've been toxic before. Doesn't make much difference because I cant drive or anything anyway. All that happens is I walk into bushes and stuff.

I don't think all you Americans get it; you guys can just phone your dr whenever and make an appointment for next week. I'm on the NHS -- I might be able to call the ep nurse on Monday because she gave me her direct line but I wouldn't be able to get the neurologist. Even if I did I probably wouldn't get an appointment until around March. I think I'm still waiting for one that I made back in December, I cant remember its been so long.

I think you pretty much have your reason why your doctor won't change your dose, your blood tests are currently in range of where you should be. Moreover, you spiked once to 70, small increases in doses of Dilantin can lead to large increases of the drug concentration as elimination becomes saturated and your liver can't clear the drug fast enough. Your doctor is probably worried that if you are already spiking 70 that if he does increase your Dilantin anymore you might spike over therapeutic range because your liver won't be able to process the drug quickly enough.

That said, if you feel like you're doctor doesn't listen to you and help you devise a treatment plan, I'm a big advocate for switching to a new one. I'm also a bit more educated than most patients. I'm not sure how that works in the NHS. :/

 

[Cint]

I'm a big advocate for switching to a new one. I'm also a bit more educated than most patients.

Really? Are you a nurse or in the medical field? onder:

 

[Penny]

Become a nuerologist so you can do what you want, until then I wouldn't think I was the one that was right without the degree.

You're right Arnie, I did sound "a little snarky" in that post but I am sooooo tired of seeing people trying to play Dr. with their meds. The thing is I have done it before too. Maybe to many times in life. More so with my bipolar than my epilepsy. My BP came first and I used most of the anti E meds trying to control my BP years ago so I do understand the frustration and what can happen when you do take control them yourself. I've been in and out psych hospitals from trying to control them. Now of course I am actually on them for E but in April they got all out of wack because apparently I missed a dose and then I forgot what was going on and wouldn't let the nurses at the independent living apartments I was at give me my meds. I ended up status, then 2 days later postical psychosis that landed me in the psych ward for 9 days. So you see, these are delicate drugs we are dealing with. We must not assume WE know their chemical balance.

I am having many problems with my meds right now too and I would so like to be in CONTROL. I finally got to talk to my E Doc's nurse last WED. morning after waiting a week. I have been on 5 meds. Two of which are E meds but had been formerly RXed by my psych who I no longer see as of beginning of June. I was having some horrible Side effects and my E had already started lowering doses on some meds. I was down to 200mgs lamictal from 600mgs. He took m totally off Wednesday. I was petrified! I kept saying to the nurse "Shouldn't I do it this way..." and she kept saying "He said....". I actually have done it his way and although I have felt a little sick and blue I am now feeling better. He also cut my klonopin (very low dose of .25mg daily) in half to just at night starting Friday night and I'm still doing ok. Slept all night the last 2 nights, havn't done that in a long time and I'm not daytime napping yesterday or so far today and NO SEIZURES!!!!!!!!!!!!!!!

Anyway, What I'm trying to say is we need to give control to our dr.s or find one we can give control too. We know what this diagnosis feels like but NOT how to treat it. :soap: