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Dr. Bob is Robert Hsiung, MD,
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Posted by ClearSkies on August 21, 2005, at 16:23:49
In reply to Re: Topamax increase - stupifying! » ClearSkies, posted by headachequeen on August 21, 2005, at 13:54:17
Thanks so much!! I read your post on the thread further above and clued in that I was going too quickly on the titration.
I'm feeling much more "with it".
ClearSkies
Posted by Nickengland on August 21, 2005, at 17:42:58
In reply to Re: Topamax increase - stupifying! » Nickengland, posted by ed_uk on August 21, 2005, at 13:35:43
Hi Ed,
I see, so Maalox would not help, using a UK version..Thanks for letting me know Ed :-)
Have you heard of bicarbonate being used with Topamax to reduce cognitive effects, or the cognitive effect being caused because of bicarbonate?...can you see a link here? i was unable to find anything on the web about it so far.
Kind regards
Nick
Posted by Nickengland on August 21, 2005, at 17:43:43
In reply to Re: Topamax increase - stupifying!, posted by Nickengland on August 21, 2005, at 17:42:58
Posted by headachequeen on August 21, 2005, at 17:51:18
In reply to Re: Topamax increase - stupifying! » headachequeen, posted by ClearSkies on August 21, 2005, at 16:23:49
> Thanks so much!! I read your post on the thread further above and clued in that I was going too quickly on the titration.
> I'm feeling much more "with it".
> ClearSkiesToo often we are given too little information about the medications we are told to take...
and then when we have problems with the side effects we quit taking the meds that might have helped us had we been properly prepared for them...
other times we are given meds with no proper background and are not prepared for the devastating properties or for the potential chaos when two meds clash...
that is one of the benefits of places such as this board where we can ask questions of people who have actually experienced the medication...
the risk is to read the negative effects from someone who took it and quit without trying to work things out...
for instance a person who titrated up too fast or, like me, who didn't read the directions and started with morning dosages and was so nauseated it was really devastating... my own fault... and when I read the directions and started over, everything worked rather well...I do have problems, though, with doctors who do not learn about new medications that render old work horse medications obsolete, especially when those older meds have really horrendous side effects...
some on this list pointed out that in the UK topamax is used on its own to combat epilepsy and that gave me the ammunition I needed.
I am now rid of the really dangerous med and doing much better with just topamax...
turns out the tegretol was causing seizures... and is known to do that...
someone had to do his homework....
thank heaven someone here did!!!!!
kat
Posted by headachequeen on August 21, 2005, at 17:52:39
In reply to Re: Topamax increase - stupifying!, posted by Nickengland on August 21, 2005, at 17:42:58
> Have you heard of bicarbonate being used with Topamax to reduce cognitive effects, or the cognitive effect being caused because of bicarbonate?...can you see a link here? i was unable to find anything on the web about it so far.
>
> Kind regards
>
> Nick
>
Nick, this is something I have not heard of...
but going to ask...meanwhile, thank you for information that has made life a lot better...
kat
Posted by Nickengland on August 22, 2005, at 6:19:53
In reply to Re: Topamax increase - stupifying! » Nickengland, posted by headachequeen on August 21, 2005, at 17:52:39
You're very welcome Kat,
Not sure if I deserve the thanks though lol - it was Racer who provided the information about bicarbonate...
I'm very interested to find out this myself too ~ I know that since taking Topamax my metabilism has changed ~ sped I think. Basically i'm processing food differently, which must be the way that Topamax makes you lose weight. I havent really had any problems with cognitive effects that are enough to cause me concern. I'm interested in this bicarbonate, to see whether it can reduce any of the existing side effects I have and to see chemically what the link is. The only side effects I have are mild, but of course if I can reduce them, that'll be great and I guess for others too..
Kind regards
Nick
Posted by headachequeen on August 22, 2005, at 9:24:41
In reply to Re: Topamax increase - stupifying! » headachequeen, posted by Nickengland on August 22, 2005, at 6:19:53
> You're very welcome Kat,
>
> Not sure if I deserve the thanks though lol - it was Racer who provided the information about bicarbonate...
>
> I'm very interested to find out this myself too ~ I know that since taking Topamax my metabilism has changed ~ sped I think. Basically i'm processing food differently, which must be the way that Topamax makes you lose weight. I havent really had any problems with cognitive effects that are enough to cause me concern. I'm interested in this bicarbonate, to see whether it can reduce any of the existing side effects I have and to see chemically what the link is. The only side effects I have are mild, but of course if I can reduce them, that'll be great and I guess for others too..
>
> Kind regards
>
> Nick
I was referring to the information about topamax being used as a sole therapy for epilepsy...
that information has made a huge difference for me...
absolutely huge...
kat
Posted by Nickengland on August 22, 2005, at 15:16:06
In reply to Re: Topamax increase - stupifying! » Nickengland, posted by headachequeen on August 22, 2005, at 9:24:41
Hello Kat
Ahh I see my applogies :-)
I'm very glad to see the success you have with Topamax for Epilepsy. I am finding it a very good drug to use too.
I was using Tegretol before topamax too and find topamax so much more helpful.
What type of Epilepsy to have?
Kind regards
Nick
Posted by ed_uk on August 22, 2005, at 15:46:24
In reply to Re: Topamax increase - stupifying!, posted by Nickengland on August 21, 2005, at 17:42:58
Hi Nick,
>Have you heard of bicarbonate being used with Topamax to reduce cognitive effects.........
Topamax can occasionally cause a condition called metabolic acidosis. Your doctor can test for this. Bicarbonate tablets are used to treat metabolic acidosis. Don't take bicarbonate tablets unless you've developed metabolic acidosis. Topamax often causes mild metabolic acidosis but severe metabolic acidosis is rare. If you had developed severe metabolic acidosis you'd be very ill! Mild metabolic acidosis can be difficult to recognise without a blood test. The risk of metabolic acidosis increases as the Topamax dose is increased.
Sodium bicarbonate caps/tabs are available on prescription. Potassium bicarbonate is also available.
Metabolic acidosis can only be diagnosed by a blood test.
Symptoms of mild metabolic acidosis are vague........
Headache
Nausea/vomiting
Reduced appetite
Deep and/or rapid breathing
Lethargy
Cognitive impairment
.............of course, all of these symptoms can occur in the absense of metabolic acidosis.Kind regards
~Ed
Posted by ed_uk on August 22, 2005, at 15:49:12
In reply to Re: Topamax increase - stupifying!, posted by Nickengland on August 21, 2005, at 17:42:58
If your doctor is not aware of the link between Topamax and metabolic acidosis...... here is some education ;-)
The offical Canadian warning:
http://www.hc-sc.gc.ca/dhp-mps/medeff/advisories-avis/public/2004/topamax_3_pa-ap_e.html
~ed
Posted by headachequeen on August 22, 2005, at 16:29:33
In reply to Re: Topamax increase - stupifying! » headachequeen, posted by Nickengland on August 22, 2005, at 15:16:06
> Hello Kat
>
> Ahh I see my applogies :-)
>
> I'm very glad to see the success you have with Topamax for Epilepsy. I am finding it a very good drug to use too.
>
> I was using Tegretol before topamax too and find topamax so much more helpful.
>
> What type of Epilepsy to have?
>
> Kind regards
>
> Nick
Salut Nick!I guess if one were to pin it down, I would be classed as having tonic clonic...
I suffered a brain injury at birth with the left templar lobe and the frontal lobe affected...
my doctor informs me that the situation is relatively rare but that he would expect nothing less from a redhead ... sigh...
As a rule the seizures are nocturnal, sometimes with the rhythmic leg and arm movements and other times with a rigid sort of reaction when I seem to be unconscious for a period of time and no one is able to recall me to consciousness until the seizure leaves me, no movement or jerking of limbs involved...
those seizures leave me in a limbo afterwards; when I waken I relive the day previous until something calls the actual day to my attention, so that I sometimes stay on one day for several days at a time... it can be truly confusing...
and exhaustingfor several months following tests ordered by a neurologist my seizures switched to daytime and were absolutely awful, as the tegretol increased the duration and the strength of the seizure...
I have often wondered how people endure that type of seizure.. I had a chance to learn first hand and frankly I would rather have gone on wondering...
it took a year to regain the balance and normalcy of my own pattern so to speak and then the neurologist wanted to do it all over again...
I have been postponing the test ... want to keep the neuro in case I need him but do not want to create that horrid imbalance in my life again, especially now that I have managed to achieve this calm with the tegretol gone...
amazing how quickly we come to enjoy a peaceful existencekat
Posted by ed_uk on August 23, 2005, at 16:24:58
In reply to Re: Topamax increase - stupifying! » headachequeen, posted by Nickengland on August 22, 2005, at 15:16:06
Hi!
Did you see my posts to you above?
Kind regards
~ed
Posted by stresser on August 23, 2005, at 21:53:45
In reply to Re: Topamax increase - stupifying! » Nickengland, posted by headachequeen on August 22, 2005, at 16:29:33
We're doing fine with the topomax here...but I am wondering about something with Nick. How long have you been taking it? I haven't gone back through all of the posts to check to see how long. I went up very slowely, and didn't have any cognative problems. ( that I know of) -L
Posted by Nickengland on August 24, 2005, at 14:19:36
In reply to Re: Topamax increase - stupifying! » Nickengland, posted by ed_uk on August 22, 2005, at 15:46:24
Hi Ed,
I remember when I first starting taking Topamax and read through the list of the side effects, metabolic acidosis was one in particular that caught my eye. (sounded quite serious :-o) That and the kidney stones..
>Don't take bicarbonate tablets unless you've developed metabolic acidosis.
Sounds sensible to me :-)
>Metabolic acidosis can only be diagnosed by a blood test.
I remember my GP when he first gave me Topamax reading through the list of side effects, he didn't mention that one in particular, but he did reassure me in a sense that this drug would be alot safer taking longterm than compared with lithium for example. He didn't mention blood tests and as far as I know my psychiatrist hasnt as of yet (I'm his first patient on topamax lol) maybe i'll remind him of this side effect and also enquire about whether a blood test should be done to check electrolytes etc and this specific side effect before I go to Australia.
As far as I know this kind of blood test doesnt have to be done routinely like with carbamazepine or lithium does it?..I have read elsewhere on the web though and I think even on the Topamax website the mention that your doctor may want to *occasionally* do a blood test just to check things are okay?
>Symptoms of mild metabolic acidosis are vague........
>Headache
No headaches whatsoever! :)
>Nausea/vomiting
All fine there
>Reduced appetite
Kind of, but I can still eat okay.
Deep and/or rapid breathing
Possibly the oppisite as i'm calmer lol
Lethargy
LOL always!
>Cognitive impairment
I'm fine there so far :-)
Kind regards
Nick
Posted by Nickengland on August 24, 2005, at 14:21:46
In reply to Topamax can cause metabolic acidosis » Nickengland, posted by ed_uk on August 22, 2005, at 15:49:12
Hi Ed,
That you for the education ;-) LOL
Seriously i'm glad you showed me that, I may actually have to educate my psychiatirst on this - it wouldn't be the first time ive had to teach him something! lol
Kind regards
Nick
Posted by Nickengland on August 24, 2005, at 14:27:18
In reply to Re: Topamax increase - stupifying! » Nickengland, posted by headachequeen on August 22, 2005, at 16:29:33
Hi Kat,
I'm very glad to hear you now have managed to achieve such a good recovery with the aid of Topamax from those seizures...
>when I waken I relive the day previous until something calls the actual day to my attention, so that I sometimes stay on one day for several days at a time... it can be truly confusing...
and exhaustingI can only imagine, that sounds very exhausting :( Do you still go through this since you've been on Topamax?...or have you been more or less seizure free so to speak since you started topamax?
Kind regards
Nick
Posted by Nickengland on August 24, 2005, at 14:29:53
In reply to To Nick!!!!!!!!!!!!!!!! » Nickengland, posted by ed_uk on August 23, 2005, at 16:24:58
Hi Ed!
All seen & replied - and very much appreciated too :-)
My posting has been sporadic lately! :-O
Kind regards
Nick
Posted by Nickengland on August 24, 2005, at 14:34:18
In reply to Re: Topamax increase - stupifying!, posted by stresser on August 23, 2005, at 21:53:45
Hi Stresser!
Good to see you and hope you are well :-)
I've been on Topamax a couple of months...everything is fine and going great i'm pleased to say!
Might be some slight confusion, the topic of this tread "Topamax increase - stupifying!" - is from another poster, but I joined in...In case you thought it was my thread and that was my side effect lol I could be wrong though?!
Kind regards
Nick
Posted by ed_uk on August 24, 2005, at 14:57:57
In reply to Re: Topamax increase - stupifying! » ed_uk, posted by Nickengland on August 24, 2005, at 14:19:36
Hi Nick,
AFAIK, the kidney stones may be related to the metabolic acidosis.
Blood tests probably aren't routine with Topamax, although they might be helpful.
Kind regards
~Ed
Posted by headachequeen on August 24, 2005, at 15:17:23
In reply to Re: Topamax increase - stupifying! » ed_uk, posted by Nickengland on August 24, 2005, at 14:19:36
> Hi Ed,
> >Reduced appetite
>
> Kind of, but I can still eat okay.
>
The appetite suppressant factor associated with the use of T is the side effect that makes it useful for people with weight problems.
I know that when it was prescribed for me because of the migraine problem I have had for years, one that was not responding to anything but a medication called sibellium - and that was something that my neurologist was not familiar with so did not want to continue prescribing - the neurologist told me that there was one significant side effect, it was known to cause weight loss.
I had gained a lot of weight from meds that did not work in the past, so it took me all of a couple of seconds to decide to try it.
If it would help control the seizures and beat the migraines (the migraine and epilepsy are related, both being electrical malfunctions, or so I have read) then it was worth a little weight loss...
:)
Shortly after I started taking T I noticed that I had lost interest in chocolate and other of the junk food groups. In a few weeks I was actually disinterested in foods other than protein foods, choosing chicken and fish and raw vegetables over the foods I had been accustomed to eating...the change was really sudden and unplanned.
Yesterday I accompanied my mother to see the surgeon who operated to replace her hip; he informed me that I had to gain weight... this man is not my doctor and I was there to learn about Mother's condition and the first thing he said was that I was drastically underweight, in fact he said I was *skinny* and should see a nutritionist, then asked if I had a physician who could provide guidance... which one of several did he want???? <gg>
Food does not have a lot of appeal ... and even when I eat a carefully planned diet(I had already been seeing a nutritionist who had planned my meals and calorie intake to try to overcome the fact that the meds I was taking caused weight gain and that didn't help, I do not gain weight, but actually have lost 12 pounds in 22 days --
I have been told that if one quits taking Topomax one will gain back the weight very quickly, and I confess that I do not have any desire to regain all the weight I gained
Aside from that I enjoy being almost seizure-free, something that only Topomax provides me...so the appetite suppressant thing is something that I have to live with and find a way around...
that means meal replacements added to my day's diet... oh such fun... these beverages are not appealing and smell worse than they taste, but now that the size seven is too big, it is time to do something...I needed to control the seizures and I will always need that control;
I needed to lose the weight I gained through taking steps to try and gain that control; the weight is gone;
now I have to find a way to balance control and not fade away to the proverbial shadow...it is certainly not dull around here....
kat
Posted by headachequeen on August 24, 2005, at 15:28:43
In reply to Re: Topamax increase - stupifying! » headachequeen, posted by Nickengland on August 24, 2005, at 14:27:18
> Hi Kat,
>
> I'm very glad to hear you now have managed to achieve such a good recovery with the aid of Topamax from those seizures...
>
> >when I waken I relive the day previous until something calls the actual day to my attention, so that I sometimes stay on one day for several days at a time... it can be truly confusing...
> and exhausting
>
> I can only imagine, that sounds very exhausting :( Do you still go through this since you've been on Topamax?...or have you been more or less seizure free so to speak since you started topamax?
>
> Kind regards
>
> Nick
>
Salut Nick!When I started taking Topamax it was as backup to the tegretol. At first the neuro was going to increase the tegretol still more and, as he said, forget about the blood results... oh joy. With my most recent discoveries about that stuff, I am so happy for the migraine headache involvement!!!
The topamax not only controlled the migraines, but it slowed down the seizures, boosting the effects of the tegretol.
While I still had seizures, it changed from several a week, sometimes two or more a night, to one or two a week...
For the longest time I had been fortunate, in that I had perhaps one or two a month, sometimes with months between, but for some reason the situation changed and the intensity increased seven or eight years ago.
I have been on Topamax for almost three years now and it made a huge change. In fact given the intensity of some of the seizures, I don't like to think what might have happened without T.
There have been two massive episodes that resulted in hospital time, the first time, before T, I spent almost a month in hospital until they managed to find a way to balance things, the second was a matter of a few days and I think the Topamax was a part of the difference, a big part.
That time the new neuro prescribed the clobazam...
which I have quit taking as well...since I quit taking Tegretol and Clobazam (May) I have had three seizures ... the tegretol was causing as many seizures as it prevented, as it turned out...
and because of extreme stress in my life in the past two or three weeks I have had couple of seizures as well but nothing in comparison to what I would have had with the tegretol to interfere...
Topomax really modifies the situation -- there has been only one of the lost days episodes when given the circumstances, it would have been expected that I would have had many seizures and probably had to be admitted to the emergency department if not hospitalised...
I know this med has its problems and that others have side effects from it...
but I do think it comes from titring up too fast and not following instructions in most cases...
it certainly can help if used properly...I hate to think where I would be without it...
kat
Posted by headachequeen on August 24, 2005, at 17:18:47
In reply to Re: Topamax increase - stupifying! » Nickengland, posted by ed_uk on August 24, 2005, at 14:57:57
>
> Blood tests probably aren't routine with Topamax, although they might be helpful.
>
> Kind regards
>
> ~EdThe protocol may change with location and with the doctor;
my neurologist and my primary care physician both require regular blood tests to check on the topamax levels;
admittedly there are not as frequent checks on the topamax levels as there were for the tegretol...
but as yet I have not read that it can kill me...of course it has not been around as long I realise before someone decides to burst that bubble <s>
kat
Posted by ed_uk on August 25, 2005, at 14:41:35
In reply to Re: Topamax increase - stupifying! » ed_uk, posted by headachequeen on August 24, 2005, at 17:18:47
>The protocol may change with location and with the doctor...
Very true :-)
~Ed
Posted by Nickengland on August 26, 2005, at 6:45:37
In reply to Re: Topamax increase - stupifying! » Nickengland, posted by headachequeen on August 24, 2005, at 15:28:43
Hi Kat!
>I know this med has its problems and that others have side effects from it...
but I do think it comes from titring up too fast and not following instructions in most cases...
it certainly can help if used properly...I totally agree. I think that maybe for some this drug will just make people worse and not help at all. At the same time there are some people it will help, but yep... I've certainly found you have to have alot of respect for this drug and use it properly ~ use it the wrong way and it can give you some unwanted side effects that you need not have, if you time the dosage carefully and again go very slowly with the increase things work out great.
I've learnt theres quite a difference for me taking the dosage all at once at night, than there is taking it in the daytime for example. Just little things like that can really make the drug work better and reduce side effects, at least thats what i've found for myself so far..
Kind regards
Nick
Posted by headachequeen on August 26, 2005, at 14:19:20
In reply to Re: Topamax increase - stupifying! » headachequeen, posted by Nickengland on August 26, 2005, at 6:45:37
> Hi Kat!
> I've learnt theres quite a difference for me taking the dosage all at once at night, than there is taking it in the daytime for example. Just little things like that can really make the drug work better and reduce side effects, at least thats what i've found for myself so far..
>
> Kind regards
>
> Nick
>Hi Nick!!
I have to grin as I read this post. When I started taking T, i really *did* read the directions I was given. The neurologist handed me two pages of closely-spaced typescript with a schedule for the first six months or so which would take me up to the complete dosage he had prescribed...
if I had absorbed what I read (and to my embarrassment I had read it twice) I would have realised that there was a protocol carefully spelled out and I was supposed to follow it;
that protocol probably existed for a reason and I would have been wise to follow it.
I was careful about the dosage and the time period between increasing the amount I was taking but I missed that crucial element of time of day and I was so sick...
it wasn't bad enough that I had to take two medications to prevent the nausea and vertigo that the tegritol caused???Simply following the destructions would have made life so simple....
sigh
Cheers!!!
kat
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