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How often do you see a neurologist?

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Posted · Report post

Ok, so when I saw my GP yesterday at the clinic, she told me that I have to start seeing a neurologist to be evaluated and to receive my Topamax prescription as it's an antiseizure medication. My pdoc won't prescribe it to me either because of it being anti-seizure and tells me I need to see a neurologist.

I have a referral in place (done by my GP yesterday) for me to see a neurologist. Once I get the referral paper in the mail (with the info as to the name, address, and phone number), I will make my appt to see the neurologist.

My main question is simple.

How often does one go to see a neurologist? This will be my first time.

Thanks,

Andy

P.S. (The only reason I was able to get it before up till now was because I had refills from my previous pdoc in combination with scripts from the past couple of times I was in the hospital so It's been holding me over till now)

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Posted · Report post

I see mine once a year, but I am seizure free.

nf

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Posted · Report post

Who prescribed the Topamax in the first place? Why didn't you get a neuro eval then?

The original prescriber was the inpatient psychiatrist after having the initial seizure. Upon leaving the hospital, the pdoc @ program continued to prescribe the medication without question. Then when I went into the hospital in October 2010, the same inpatient pdoc increased my Topamax from 50mg BID which I was taking for seizures to 50mg AM / 100mg PM. He increased the dosage to be used for seizures, but also as a mood stabilizer in addition to the Lithium I'm on.

I got a script from the inpatient pdoc twice because I went to the hospital for psych reasons Oct and Nov 2010. That helped, and my regular pdoc gave me one script and told me I needed to see a neruo so I had one script there. and I used the refills from the old pdoc.

So with the combination, I've been delaying what I know I should've done long ago.

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Posted · Report post

So with the combination, I've been delaying what I know I should've done long ago.

Weren't you worried about getting a neuro three months ago? It sounds like the only thing that's getting you to see a neuro is your RX running out, not any problems with the seizure disorder. I know you think the Topamax also helps you with bipolar symptoms, but if your pdoc doesn't agree, well, he's the one who went to med school. Once the neuro does the evaluation, he might even discontinue the Topamax, so don't worry too much about how often you'll have to go. The neuro will tell you depending on your situation.

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Posted · Report post

Well, even though my pdoc (current) won't prescribe the Topamax, he thinks it would be beneficial for me to be on it. He (pdoc) won't prescribe it because he fears that his clinic would get in trouble should he give me a script and god forbid I had a seizure, it would fall on his shoulders. I can understand that he's covering his basis.

I just prefer to stay on the medication because I don't want to risk a seizure. I mean if things are working, why change it?

(I'm in a mode right now where I don't want to change my meds (other than what's been planned by my pdoc)).

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Posted · Report post

I can't imagine you're following your pdoc's reasoning quite rightly. If he continued prescribing you meds you've been taking, yet you still had a seizure, I'm not seeing where the liability would come in. He's putting himself in greater jeopardy, potentially, by not refilling your prescription, and creating a greater seizure potential.

But, if you've never been seen by a neurologist, how do you even know you have a chronic seizure condition?

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Posted · Report post

I've only had one seizure and that was in January 2010. I've never had a 2nd.

I'm not really sure how to answer your question. I don't know if I have a chronic condition, but I hate to take chances in that department because I know in some cases seizures can be deadly too and I don't want to chance my life with seizures if I don't have too.

The increase in Topamax in October 2010 was not because I had a 2nd seizure, it was to help a hypomanic episode when I was hospitalized, after attempting to change medications outside the hospital and they weren't working (d/c Remeron, add Zyprexa)

As far as the way he (current pdoc) portray's it, he's not allowed to prescribe anti-seizure medications for non-psych reasons, so he won't give me a script. And the GP spoke to the attending doctors and was advised to tell me that she could give me one prescription for Topamax and I would need to see a neurologist for an evaluation and for a continuation of the Topamax 'script.

I know that sometimes that fewer medications are better, but I feel that I'm skeptic about d/c - ing the Topamax.

I know you guys are use to me as changing or adding medications that I really don't need to be changing or adding on, but the only argument I have is that I don't want to chance another seizure (whether or not I have a seizure disorder). I'd rather take the Topamax and feel comfortable knowing I'm not going to get a seizure, than work off it and start the worry cycle that you guys know I'm custom to getting.

I know it's up to the neuro, but at least you have my "defense" on this.

Thanks,

Andy.

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Posted · Report post

The way your current pdoc is explaining things makes no sense at all. Off label prescribing is done all the time.

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Posted · Report post

I'm not disputing the seeing of a neurologist. I will make the appt once I get the referral sheet in the mail with the info I need to make the appt. (I'm not disputing that).

The only thing is because I don't want to take too many days off of program which is why I asked my original question which is how often do you see a neurologist?

Is it once a month, twice a month, once every few months?

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Posted · Report post

Oh ok. That's a fair answer.

Thanks.

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Posted · Report post

I see my epileptologist every three months as my seizures are not uncontrollable. One in 10 people will have a seizure--just one. That doesn't mean they have a seizure disorder and need to take anti-seizure meds. Topamax is used for many things..such as migraines and even weight loss.

It can be used as an anticonvulsant, but my doc prefers I use it as an add-on med. I take 300 mgs. in addition to 3,000 mgs. of Keppra and 200mgs Lamictal. Weeee! Talk about brain candy.

It's imperative that you see a neurologist so he/she can get a full history from you, and perhaps an EEG or MRI.

I agree with you, not wanting to take more drugs--it sucks. Topamax is very expensive (I get the generic-Topiramate. Like most anti-convulsants, it carries with it a shit-ton of side effects, including 1 in 500 people who experience suicidal thoughts, panic attacks, irritability,blah blah blah.

Even though I gave you the statistic about adults who have one seizure and that's the only one...you should see a neuro. as soon as you can. Remember, though, DO NOT just stop taking Topamax. It's one of those meds you must wean yourself off slowly. Very sloooowly.

Best of luck!

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Posted · Report post

So..what's the latest guy? how are things going with your meds? I sure hope you didn't just stop taking them without talking with your neuro. Honestly, I'm wicked confused.

Why do you have to wait for a piece of paper to be delivered in your mailbox stating you need to see an Epi doc? what's up with that? If your PDOC thinks something is amiss he/she should have ordered at least a CAT scan or MRI while you were in the office to save you and your potential Epi. doc. a lot of time.

After my "big" honking tonic seizure at 42, both tests were ordered and I was put on Dilantin and Lamictal, but after talking with a Neurologist and him getting a complete history, the meds were adjusted, Dilatin was gone, Lamictal was adjusted and an add-on was added. You most certainly can't go by a PDOC's opinion. You NEED to see a Neurologist or even better, an Epi. doc who is a true specialist and can figure out our brainsies. (if that's possible) HA!

Best wishes to you!

Keep us informed

Sheila

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Posted · Report post

I saw a Neurologist earlier this month. I had an MRI done last Friday and I'm having my EEG done today.

I go back to the neurologist in march to see what the results show and where to go from there.

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Posted · Report post

I won't go into my neuro issues but I have simple partials, which are mostly an annoyance. My neuro feels anti seizure meds will make things worse. I have to avoid triggers, such as bight flashing light, and so far, have not had anything worse.

He cleared me to drive, and I only see him once a year, unless things go south. I have repeat mris down to once a year now. I had 4 eegs but in my case the mri is better.

You really need a neurologist to pinpoint any seizures and give you appropriate meds, if any. A pdoc cannot really know that. A neurologist will know the right tests after he does some tests himself. the appointment should last about an hour, and then he will set up an eeg, or mri, ect, depending on what he finds from the tests he does at the appointment.

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Posted · Report post

My neurologist's not in too much of a rush to see me. Once, maybe twice a year, but I can request an appt thru my internist, I guess I can text my neurologist,too.

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Posted · Report post

I can IM my psychiatrist, but we don't do that very often, and I digress.

How did your neuro appointment go? I've been in a strange position... had a seizure, had an MRI, discovered a cavernous hemangioma (the cause of the seizures), currently taking seizure medicine, had surgery to remove the angioma.

I was on Lamictal 200mg. We added Keppra 500mg 2x/day. Left it at that for a few months. Had the surgery, now I have an MRI 6 weeks after and a followup apt. with the neurosurgeon.

Will stay on the seizure meds for at least 3 months post surgery then start to taper.

So for me, it was about 2 months in between, and for a rather complicated case at that.

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Posted · Report post

I see my neurologist 6 or 7 times a year, but I have treatment resistant Migraine.

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Posted (edited) · Report post

How did your neuro appointment go?

I saw my neuro doc in March and he advised me to continue the dose of Topamax I was on at the time (50mg AM / 100mg PM) for 2 additional months. I go back to him in May to reevaluate. It's possible that in May, we may start a tapering process of the Topamax.

Edited by netsavy006

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