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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 25 of 48. This is the beginning of the thread.
Posted by Larry Hoover on June 6, 2005, at 12:46:58
And topomax sucks!
I found Neurontin intolerable. I cannot conceive of Topomax being useful. I'm only at 75 mg/day, and this is my side-effect list. This is not an exaggerated list.
fatigue
flu-like symptoms
fot flushes
dizziness
speech problems
paresthesia
tremor
involuntary muscle contractions
nausea
dyspepsia
abdominal pain
dry mouth
gingivitis
nervousness
memory problems
somnolence
confusion
emotional lability
difficulty with concentration
pharyngitis
sinus headache
taste perversion
micturition frequency
pruritusI cannot conceive of going higher in dosage, considering these side effects, unless they are transient. Do they tend to pass, with time? Anybody?
Lar
Posted by ed_uk on June 6, 2005, at 12:54:42
In reply to Neurontin to Topomax, posted by Larry Hoover on June 6, 2005, at 12:46:58
Dear Lar,
Are you taking Topamax for pain?? The side effects sound horrible, perhaps you should stick with the oxycodone!
Ed.
Posted by Larry Hoover on June 6, 2005, at 13:02:42
In reply to Re: Neurontin to Topomax » Larry Hoover, posted by ed_uk on June 6, 2005, at 12:54:42
> Dear Lar,
>
> Are you taking Topamax for pain?? The side effects sound horrible, perhaps you should stick with the oxycodone!
>
> Ed.The intention is to treat the nerve pain. The oxycodone really doesn't do much more than to "round the edges" off of that. I'm already at the practical limit of oxycodone, I imagine. At least, the practical prescribing limit? I see my doctor tomorrow. I've only been on the topomax since Friday. It is a horror show of side effects, but it actually works for the nerve pain, believe it or not. So did the gabapentin. It's the side effects that are unbearable.
On topomax, I remain tender at the site of the nerve injury. If I bump it, it will hurt like the dickens. But the chronic pain part goes away, with the topomax. I'm truly between a rock and a hard place right now. And I'm at my limit.
My doctor had talked about valproic acid. Ever heard of it used this way?
Lar
Posted by Maxime on June 6, 2005, at 13:37:52
In reply to Re: Neurontin to Topomax » ed_uk, posted by Larry Hoover on June 6, 2005, at 13:02:42
Hi Larry. Since you have only been on it since Friday, maybe you titrated it too quickly. Perhaps you should go back down to 25 mg and stay there for a week and bump it 25 mg every week.
Maxime
> > Dear Lar,
> >
> > Are you taking Topamax for pain?? The side effects sound horrible, perhaps you should stick with the oxycodone!
> >
> > Ed.
>
> The intention is to treat the nerve pain. The oxycodone really doesn't do much more than to "round the edges" off of that. I'm already at the practical limit of oxycodone, I imagine. At least, the practical prescribing limit? I see my doctor tomorrow. I've only been on the topomax since Friday. It is a horror show of side effects, but it actually works for the nerve pain, believe it or not. So did the gabapentin. It's the side effects that are unbearable.
>
> On topomax, I remain tender at the site of the nerve injury. If I bump it, it will hurt like the dickens. But the chronic pain part goes away, with the topomax. I'm truly between a rock and a hard place right now. And I'm at my limit.
>
> My doctor had talked about valproic acid. Ever heard of it used this way?
>
> Lar
>
>
Posted by ed_uk on June 6, 2005, at 14:02:17
In reply to Re: Neurontin to Topomax » ed_uk, posted by Larry Hoover on June 6, 2005, at 13:02:42
Hi Lar,
>My doctor had talked about valproic acid. Ever heard of it used this way?
Yes.....but AFAIK, it's not often prescribed for this purpose - at least not in the UK. I suppose you've already tried Tegretol. Trileptal might also be helpful, it generally seems to have less side effects than Tegretol. Nortriptyline or desipramine can be effective for neuropathic pain, they seem to be better tolerated than amitriptyline. I've got a feeling that you said you can't tolerate TCAs though.
>The oxycodone really doesn't do much more than to "round the edges" off of that. I'm already at the practical limit of oxycodone, I imagine.
RE OxyContin........
The manufacturer suggests that most patients never need more than 400mg oxycodone/24hours.....I've never heard of anyone taking more than 1000mg/24hours. As you know, most people take much less than this.
Kind regards,
Ed.
Posted by ed_uk on June 6, 2005, at 14:08:57
In reply to Re: Neurontin to Topomax » ed_uk, posted by Larry Hoover on June 6, 2005, at 13:02:42
Hi Lar!
>I'm only at 75 mg/day........
>I've only been on the topomax since Friday.............Oops, I didn't notice that!!!!!
Maxi is absolutely right. Most people need to titrate Topamax VERY gradually. Perhaps you could return to 25mg and increase more gradually eg. 25mg/day every *two weeks*. Some people titrate even more gradually than this!
Ed.
Posted by ed_uk on June 6, 2005, at 14:41:00
In reply to Neurontin to Topomax, posted by Larry Hoover on June 6, 2005, at 12:46:58
>I'm only at 75 mg/day........
Hmm, perhaps you meant to say 25mg. It would be pretty impressive if it was effectively treating your pain at 25mg! If you *are* taking 25mg, I suppose you could decrease to 15mg. I'm not sure whether you've got the 15mg 'sprinkle' caps in Canada. I suppose you will have because we've got them here
...............Topamax 15mg comes as an exciting 'sprinkle' capsule, you can swallow the capsule whole or you can open it and sprinkle the contents on soft food. In the UK, the sprinkle caps come in 15mg, 25mg and 50mg strengths.
Kind regards,
Ed.PS......
>confusion
I hope my post makes sense. I took 10mg diazepam for my exam this afternoon and I went to the bar afterwards (no more exams till August). I'm feeling a bit cognitively impaired myself lol :-)
Posted by ed_uk on June 6, 2005, at 14:49:43
In reply to Re: Neurontin to Topomax » Larry Hoover, posted by ed_uk on June 6, 2005, at 14:41:00
>I went to the bar afterwards........
Please no one shout at me for mixing alcohol with diazepam! I didn't drink much :-) It's almost worn off now anyway.
Sorry Lar, I seem to have hijacked your thread, how rude! I would like to refer everyone back to your original question :-)
Ed.
Posted by ed_uk on June 6, 2005, at 15:15:02
In reply to Re: Neurontin to Topomax » ed_uk, posted by Larry Hoover on June 6, 2005, at 13:02:42
Hi Lar,
Topamax is a carbonic anhydrase inhibitor. Acetazolamide is a carbonic anhydrase inhibitor which is used to treat glaucoma. Topamax and acetazolamide *share* many side effects.
Common side effects shared by Topamax and acetazolamide...........
Taste disturbances, loss of appetite, weight loss, paresthesia (numbness/tingling), fatigue, kidney stones etc.
Have a look at this.........................
Carbonic anhydrase inhibitor side effects. Serum chemical analysis.
Epstein DL, Grant WM.
Multiple serum chemical values were examined in 92 patients with chronic glaucoma who were treated with the carbonic anhydrase inhibitors (CAIs) acetazolamide or methazolamide, seeking relationships between serum composition and symptomatic side effects. Of the 92 patients, 44 complained of a symptom-complex of malaise, fatigue, weight loss, depression, anorexia, and loss of libido, which we have found most commonly to threaten continuation of therapy. Patients who had this symptom complex were significantly more acidotic than those without it. Ten of 24 patients who had chemical evidence of excessive acidosis reported a dramatic alleviation of symptoms when sodium bicarbonate was administered.
Ed.
Posted by MidnightBlue on June 6, 2005, at 15:59:18
In reply to Re: Neurontin to Topomax » ed_uk, posted by ed_uk on June 6, 2005, at 14:49:43
Ed,
I already "yelled" at you, I just didn't send the message! Decided it would come across sounding too much like you Mom! LOL
Hugs,
MidnightBlueP.S. now don't do that again
Posted by SLS on June 6, 2005, at 16:39:21
In reply to Neurontin to Topomax, posted by Larry Hoover on June 6, 2005, at 12:46:58
Hi Larry.
What a yummy list.
How does your titration schedule compare to the one below?
http://www.postgradmed.com/issues/2002/01_02/beydoun.htm
"Topiramate has significant efficacy when used as adjunctive therapy (15). Because of potential adverse cognitive events, it should be started at a low dose, with gradual adjustment in dosage thereafter. A starting dose of 25 or 50 mg per day is appropriate, with weekly increments of 25 to 50 mg per day. The usual target dose for adjunctive therapy is 400 mg taken twice daily, with a dose range between 100 and 1,000 mg per day."
What is the Topamax for?
Have you thought to try Trileptal. Most people have good things to say about it - including me.
- Scott
- Scott
Posted by SLS on June 6, 2005, at 16:42:08
In reply to Re: Neurontin to Topomax » ed_uk, posted by Larry Hoover on June 6, 2005, at 13:02:42
Sorry. I didn't read this post before submitting mine. I have to parcel out my mental energy, so I can't read everything.
Try Cymbalta or Lyrica.
- Scott
> > Dear Lar,
> >
> > Are you taking Topamax for pain?? The side effects sound horrible, perhaps you should stick with the oxycodone!
> >
> > Ed.
>
> The intention is to treat the nerve pain. The oxycodone really doesn't do much more than to "round the edges" off of that. I'm already at the practical limit of oxycodone, I imagine. At least, the practical prescribing limit? I see my doctor tomorrow. I've only been on the topomax since Friday. It is a horror show of side effects, but it actually works for the nerve pain, believe it or not. So did the gabapentin. It's the side effects that are unbearable.
>
> On topomax, I remain tender at the site of the nerve injury. If I bump it, it will hurt like the dickens. But the chronic pain part goes away, with the topomax. I'm truly between a rock and a hard place right now. And I'm at my limit.
>
> My doctor had talked about valproic acid. Ever heard of it used this way?
>
> Lar
>
>
Posted by Larry Hoover on June 6, 2005, at 17:03:55
In reply to Re: Neurontin to Topomax » Larry Hoover, posted by ed_uk on June 6, 2005, at 14:08:57
> Hi Lar!
>
> >I'm only at 75 mg/day........
> >I've only been on the topomax since Friday.............
>
> Oops, I didn't notice that!!!!!
>
> Maxi is absolutely right. Most people need to titrate Topamax VERY gradually. Perhaps you could return to 25mg and increase more gradually eg. 25mg/day every *two weeks*. Some people titrate even more gradually than this!
>
> Ed.Aaaaak!
Maybe that's the problem!
Morontin to Stupimax, and I've messed up the friggin titration schedule.
I did not get instructions to only take 25 mg/day for a week.
I was told to start at 25 mg b.i.d. for a week, and I think one day I messed up and took it twice, and thus I related my side effects to 75 mg. I'm not even sure I took 75. It might only have been 50 all along. But NOBODY TOLD ME TO START AT TWENTY FIVE! NOBODY TOLD MR. FRIGGIN SIDE EFFECT TO START AT 25!
<RANT MODE OFF>
Thanks all.
Now I don't know what to do. I had made up my mind to simply ditch this sh*t. Probbly will, anyway.
Lar
Posted by Larry Hoover on June 6, 2005, at 17:06:39
In reply to Re: Neurontin to Topomax » Larry Hoover, posted by SLS on June 6, 2005, at 16:39:21
> Hi Larry.
>
> What a yummy list.
>
> How does your titration schedule compare to the one below?
>
> http://www.postgradmed.com/issues/2002/01_02/beydoun.htm
>
> "Topiramate has significant efficacy when used as adjunctive therapy (15). Because of potential adverse cognitive events, it should be started at a low dose, with gradual adjustment in dosage thereafter. A starting dose of 25 or 50 mg per day is appropriate, with weekly increments of 25 to 50 mg per day.Thanks, Scott. A yummy list, indeed. But, according to crazymeds, and other sources, as I don't have temporal problems, it's not the right med for me.
Lar
Posted by Larry Hoover on June 6, 2005, at 17:11:25
In reply to Re: Neurontin to Topomax » Larry Hoover, posted by ed_uk on June 6, 2005, at 14:02:17
> Hi Lar,
>
> >My doctor had talked about valproic acid. Ever heard of it used this way?
>
> Yes.....but AFAIK, it's not often prescribed for this purpose - at least not in the UK. I suppose you've already tried Tegretol. Trileptal might also be helpful, it generally seems to have less side effects than Tegretol. Nortriptyline or desipramine can be effective for neuropathic pain, they seem to be better tolerated than amitriptyline. I've got a feeling that you said you can't tolerate TCAs though.Thanks for helping me, Ed. I can't think well right now. The neurologist mentioned nortriptyline, but I was kind of put off by the potential anticholinergic effects. Does it have many? Or was my reaction out of line?
> >The oxycodone really doesn't do much more than to "round the edges" off of that. I'm already at the practical limit of oxycodone, I imagine.
>
> RE OxyContin........
>
> The manufacturer suggests that most patients never need more than 400mg oxycodone/24hours.....I've never heard of anyone taking more than 1000mg/24hours. As you know, most people take much less than this.Whoa.... I've got room, there, after all. I'm not even close. It's my doctor that is limited. Maybe I need a referral to a pain specialist. Or a copy of the manufacturer's recommendations.
> Kind regards,
> Ed.Thanks, buddy. I see my doctor in eighteen hours, after (hopefully) a good sleep. I need to put together at least one good proposal for where we go from here.
Lar
Posted by ed_uk on June 6, 2005, at 17:12:54
In reply to Re: Neurontin to Topomax » ed_uk, posted by Larry Hoover on June 6, 2005, at 17:03:55
Hi Lar,
>I did not get instructions to only take 25 mg/day for a week.
A lot of people seem to stay at 25mg for two weeks! Go VERY slow, it really helps :-) It sounds like a low dose will be sufficient to control your pain.
>Now I don't know what to do.
You could start taking 25mg at night and see how it goes. If necessary, you could get the 15mg caps to aid titration.
Kind regards,
Ed.
Posted by Larry Hoover on June 6, 2005, at 17:31:17
In reply to Re: Neurontin to Topomax » Larry Hoover, posted by ed_uk on June 6, 2005, at 17:12:54
> Hi Lar,
>
> >I did not get instructions to only take 25 mg/day for a week.
>
> A lot of people seem to stay at 25mg for two weeks! Go VERY slow, it really helps :-) It sounds like a low dose will be sufficient to control your pain.
>
> >Now I don't know what to do.
>
> You could start taking 25mg at night and see how it goes. If necessary, you could get the 15mg caps to aid titration.
>
> Kind regards,
> Ed.The very first dose of 25 mg made me feel like I had food poisoning. It wasn't until I realized that the side effects were stable over time that I was certain that they were associated with the topiramate. I cannot believe that this medication is going to be one that I tolerate nicely.
For example, I forgot to add a new side effect to the list....oligohydrosis (decreased sweating). It was very hot and humid today. I do not have air conditioning in my car, and it is painted a very dark colour. I normally sweat *buckets*. My skin was dry, and very warm and flushed. Not good. Not good at all. I was half way to hyperthemia from a 45 minute outing.
Time to move on to a different med.
Lar
Posted by ed_uk on June 6, 2005, at 17:47:46
In reply to Re: Neurontin to Topomax » ed_uk, posted by Larry Hoover on June 6, 2005, at 17:11:25
Hi Lar!
>The neurologist mentioned nortriptyline, but I was kind of put off by the potential anticholinergic effects. Does it have many?
Although it often causes dry mouth and constipation, it's quite a lot less anticholinergic than most TCAs. Low doses can be useful for pain, an initial dose of 10mg/day could be useful. Nortriptyline is essentially a norepinephrine reuptake inhibitor, 'pseudo-anticholinergic' side effects may occur as a result. Given your previous (bad!) responses to various antidepressants, I wondered whether you might be uncomfortable taking nortriptyline. Nevertheless, it does seem to be quite an effective antidepressant...........it's also sometimes useful for relieving the pain and diarrhea of IBS.
From Martindale............
Studies in vitro showed antidepressant affinities for human muscarinic acetylcholine receptors and therefore the likelihood of antimuscarinic effects to be, in *descending* order:
amitriptyline
protriptyline
clomipramine
trimipramine
doxepin
imipramine
nortriptyline
desipramineDesipramime, another norepinephrine reuptake inhibitor, is also sometimes effective for neuropathic pain. It is less likely to cause sedation than nortriptyline. Desipramine is sometimes quite 'activating' - it can cause insomnia. Nortriptyline is much less sedating than trimipramine- which I believe you've taken in the past.
Scott mentioned Cymbalta. I wondered whether you might be uncomfortable taking an SNRI given your previous bad reactions to SSRIs. I suppose you could start Cymbalta at a VERY low dose and see how it goes.
If you want to try another anticonvulsant, I think Trileptal is worth considering. What do you think??? Depakote is another option - you said your doc suggested it.
>Whoa.... I've got room, there, after all. I'm not even close.
Like morphine, oxycodone does *not* have a maximum dose. Provided that it is titrated *gradually*, tolerance develops to the respiratory depressant effect of the drug, allowing the dose to be increased as required.
RE morphine, doses in excess of 2500mg every four hours have been recorded!!! Obviously, such a high dose would be rapidly fatal to a person who was not tolerant to the respiratory depressant effect of morphine.
>Maybe I need a referral to a pain specialist.
That could be very useful :-)
>Or a copy of the manufacturer's recommendations.
Here is the UK data sheet........
http://emc.medicines.org.uk/emc/industry/default.asp?page=displaydoc.asp&documentid=2579
Kind regards,
Ed.
Posted by ed_uk on June 6, 2005, at 17:52:08
In reply to Re: Neurontin to Topomax » ed_uk, posted by Larry Hoover on June 6, 2005, at 17:31:17
Hi Lar,
>I cannot believe that this medication is going to be one that I tolerate nicely.
Me neither :-(
>oligohydrosis........
Can be dangerous, permanent neuro damage has been reported to have occured following topiramate-induced hyperthermia. Topiramate is thought to decrease sweating by acting as a carbonic anhydrase inhibitor.
Kind regards,
Ed.
Posted by Maxime on June 6, 2005, at 17:53:56
In reply to Re: Neurontin to Topomax » ed_uk, posted by Larry Hoover on June 6, 2005, at 17:31:17
Hi Larry. If you do decide to stay on, make sure you drink LOTS of water. Many people develop UTIs and even kidney stones from the med. When I was on it I had a very bad UTI. Then the med made me go psychotic and I ended up in the hospital.
Not my favourite med either. :-)
Maxime
> > Hi Lar,
> >
> > >I did not get instructions to only take 25 mg/day for a week.
> >
> > A lot of people seem to stay at 25mg for two weeks! Go VERY slow, it really helps :-) It sounds like a low dose will be sufficient to control your pain.
> >
> > >Now I don't know what to do.
> >
> > You could start taking 25mg at night and see how it goes. If necessary, you could get the 15mg caps to aid titration.
> >
> > Kind regards,
> > Ed.
>
> The very first dose of 25 mg made me feel like I had food poisoning. It wasn't until I realized that the side effects were stable over time that I was certain that they were associated with the topiramate. I cannot believe that this medication is going to be one that I tolerate nicely.
>
> For example, I forgot to add a new side effect to the list....oligohydrosis (decreased sweating). It was very hot and humid today. I do not have air conditioning in my car, and it is painted a very dark colour. I normally sweat *buckets*. My skin was dry, and very warm and flushed. Not good. Not good at all. I was half way to hyperthemia from a 45 minute outing.
>
> Time to move on to a different med.
>
> Lar
>
Posted by SLS on June 6, 2005, at 17:56:10
In reply to Re: Neurontin to Topomax » ed_uk, posted by Larry Hoover on June 6, 2005, at 17:31:17
Larry,
> Time to move on to a different med.
I don't know if you noticed in one of my posts that I offered as suggestions either Cymbalta or Lyrica.
- Scott
Posted by Phillipa on June 6, 2005, at 17:57:18
In reply to Re: Neurontin to Topomax » Larry Hoover, posted by Maxime on June 6, 2005, at 17:53:56
Scott may have been on to something with the cymbalta. The one good thing that it did for me was I no longer had any muscle, bone, or joint pain. I didn't realize this until I went off it and they all came back. Fondly, Phillipa
Posted by Larry Hoover on June 6, 2005, at 18:02:24
In reply to Re: Neurontin to Topomax » Larry Hoover, posted by SLS on June 6, 2005, at 17:56:10
> Larry,
>
> > Time to move on to a different med.
>
> I don't know if you noticed in one of my posts that I offered as suggestions either Cymbalta or Lyrica.
>
>
> - ScottI appreciate the thought, Scott, by neither one is available in Canada.
Lar
Posted by Larry Hoover on June 6, 2005, at 18:04:09
In reply to Re: Neurontin to Topomax » Larry Hoover, posted by ed_uk on June 6, 2005, at 17:52:08
> Hi Lar,
>
> >I cannot believe that this medication is going to be one that I tolerate nicely.
>
> Me neither :-(
>
> >oligohydrosis........
>
> Can be dangerous, permanent neuro damage has been reported to have occured following topiramate-induced hyperthermia. Topiramate is thought to decrease sweating by acting as a carbonic anhydrase inhibitor.
>
> Kind regards,
> Ed.As soon as I noticed it, I *mentally* blanched. My skin didn't, of course. I immediately knew the consequences.
No way I'm playing around with temperature regulation.
Lar
Posted by Larry Hoover on June 6, 2005, at 18:13:29
In reply to Re: Neurontin to Topomax » Larry Hoover, posted by ed_uk on June 6, 2005, at 17:47:46
> Desipramime, another norepinephrine reuptake inhibitor, is also sometimes effective for neuropathic pain. It is less likely to cause sedation than nortriptyline. Desipramine is sometimes quite 'activating' - it can cause insomnia. Nortriptyline is much less sedating than trimipramine- which I believe you've taken in the past.
I still take trimipramine, 25 mg QHS. Back on 30 mg temazepam QHS as well, as the Imovane interacted adversely with the Neurontin. Maybe the Imovane caused some of the problems I attributed to Neurontin? It all gets so friggin complicated. What role does the oxycodone play?
> Scott mentioned Cymbalta.
Not available in Canada, yet.
> If you want to try another anticonvulsant, I think Trileptal is worth considering. What do you think??? Depakote is another option - you said your doc suggested it.I dunno what to think about anticonvulsants. I've not had good luck with them so far. I've not looked to them on purpose, ya know?
> >Whoa.... I've got room, there, after all. I'm not even close.
>
> Like morphine, oxycodone does *not* have a maximum dose. Provided that it is titrated *gradually*, tolerance develops to the respiratory depressant effect of the drug, allowing the dose to be increased as required.Maybe that's the answer. The problem is, I don't like the psychoactive effect at all. I know, properly titrated, the psychoactive effect is minimized.....but as the dose escalates, it does get harder to manage, in some respects. I've been using the IR product. Maybe it's time to switch to the XR, or the Contin format.
> RE morphine, doses in excess of 2500mg every four hours have been recorded!!! Obviously, such a high dose would be rapidly fatal to a person who was not tolerant to the respiratory depressant effect of morphine.
Thanks. I grock it. (For any Heinlein fans.)
> >Maybe I need a referral to a pain specialist.
>
> That could be very useful :-)If the queue isn't too lengthy.
> >Or a copy of the manufacturer's recommendations.
>
> Here is the UK data sheet........Ta.
http://emc.medicines.org.uk/emc/industry/default.asp?page=displaydoc.asp&documentid=2579
>
> Kind regards,
> Ed.Thanks, buddy.
Lar
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Dr. Bob is Robert Hsiung, MD,
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