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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1527 to 1551 of 1838. Go back in thread:
Posted by headachequeen on June 9, 2005, at 22:14:58
In reply to Re: New to Topomax, posted by paintmom on June 3, 2005, at 14:36:27
>
> I've always had sleep problems...I have Chronic Fatigue Syndrome...Apnea.....Insomnia....etc.....I have trouble falling asleep and staying asleep...and because of the apnea....my quality of sleep is poor. But since I've raised the topamax above 50mg....my sleep has been horrible!!!!!! I cant fall asleep and when I finally do...I wake up over and over again.
Have you asked your primary care physician to give you something that will help you 'turn off your brain' at nights? I have problems sleeping, problems that date back to long before the Topomax came into my life...
and I checked, there is nothing on the bottle that mentions drowsiness....
When I go to bed, I read for a little while, right now I am reading about reiki as I am taking courses in it, or about the Ottoman empire, or books on training... nothing stimulating. After about three pages I usually find my eyes telling me that they are not able to process the symbols on the page, time to sleep...
but the slightest sound or movement and I am awake... and do not go back to sleep easily..
At the sleep lab they told me that I wakened as soon as I reached a deep sleep... trust me to get even that backwards!!!
I have a prescription for a very mild sleeping medication that simply tells my brain to stop thinking and it helps me sleep for a few hours ...
traditionally my best sleeping time has always been between five and eleven in the morning...
of course employers expect one to be at work in the morning and don't care that the only time I sleep soundly without wakening is the time they expect some sort of work for pay...
being a free lancer has helped and being able to set my own hours for training and such helps too...
but it would be nice to be able to go to bed and go to sleep and stay asleep until the alarm wakens one...
I understand that there are people who do that <sigh>
kat
Posted by headachequeen on June 9, 2005, at 22:16:37
In reply to Re: New to Topomax, posted by paintmom on June 7, 2005, at 6:59:26
> I talked with my psych nurse practitioner and we lowered my topamax from 100 to 50 yesterday. I took a little temazapam just to help me fall asleep cause I was punch drunk from being over tired...I swear I haven't slept thru the night in two months....and low and behold...I SLEPT 8 HOURS STRAIGHT!!!!!!!!!
> I am so happy!
> I am just a little nervous because I don't see the NP till next thursday....and I think I am going to have some issues on the lower dose. I mean the 100mg was perfect for me.....I felt very evened out. Lower and I was getting a little depressed.
> Guess I will try to do natural stuff to help myself...exercise, eat right, and take my Omega 3's and B's...that really seems to help.
> I am hoping that she adds a little something to the topamax that doesn't make me gain weight but will help to keep me on an even keel. I don't want to start getting all reactive again....I was that way my whole life and I hated it. It was like being a big raw open nerve.
>
> Well, I'll keep you guys posted.
>
> All the best,
>
> Paintmom
>Oh I sound like a stuck record but were you doing the half in the morning and half at night time routine?
kat
Posted by paintmom on June 10, 2005, at 7:36:31
In reply to Re: New to Topomax » paintmom, posted by headachequeen on June 9, 2005, at 22:16:37
> >
>
> Oh I sound like a stuck record but were you doing the half in the morning and half at night time routine?
> katno...I can only take it in the AM or I don't sleep
:)
Posted by stresser on June 11, 2005, at 18:56:30
In reply to Re: New to Topomax, posted by paintmom on June 10, 2005, at 7:36:31
Topomax doesnt' seem to keep me awake.
She is trying the Niocin Shampoo, but it really isn't doing much for the hair. I will continue to buy it, and see what happens with it.I feel as if maybe I need to increase my topomax dosage a little. Is there such a thing as building up a tolerance to it? Am I just getting worse these days with my moods? I know it's not PMS, and I feel like I did before I started taking Topamax. I only take 200mg, and the doctor said that it is quite low. I don't mind it being low, I feel relieved that I don't need it too be stronger yet.
Kat- I hate it that you are still having the seizures...can you increase the topomax dosage? What else are you taking other that the two you mentioned? -L
Posted by headachequeen on June 12, 2005, at 8:47:26
In reply to Re: New to Topomax, posted by paintmom on June 10, 2005, at 7:36:31
> > >
> >
> > Oh I sound like a stuck record but were you doing the half in the morning and half at night time routine?
> > kat
>
> no...I can only take it in the AM or I don't sleep
> :)
>Wow! that is difficult for your system to adjust to...
the medication is meant to be delivered into the system evenly over a 24-hour period, hence the need to take it at twelve-hour intervals... I take mine as soon as I get up in the morning along with the cloba holy batman and other meds that I take in the morning.... the tegretol if I want to survive I have to break down into four doses a day when I take it as it must be delivered the same way... and then twelve hours later I take the topomax again...
so 'nighttime' is not actually bedtime or any time close to that, but around an hour or so after dinner...
by the time I am ready to settle down to the idea of bed five or six hours have passed and we get along fine...
kat
Posted by headachequeen on June 12, 2005, at 9:22:28
In reply to Re: Kat and everyone, posted by stresser on June 11, 2005, at 18:56:30
> Topomax doesnt' seem to keep me awake.
> She is trying the Niocin Shampoo, but it really isn't doing much for the hair. I will continue to buy it, and see what happens with it.
>
> I feel as if maybe I need to increase my topomax dosage a little. Is there such a thing as building up a tolerance to it? Am I just getting worse these days with my moods? I know it's not PMS, and I feel like I did before I started taking Topamax. I only take 200mg, and the doctor said that it is quite low. I don't mind it being low, I feel relieved that I don't need it too be stronger yet.
>
> Kat- I hate it that you are still having the seizures...can you increase the topomax dosage? What else are you taking other that the two you mentioned? -L
>
Ma chere amie, I am going to do some research this week and see what we can do about that hair...
spent the weekend taking a reiki course friend who is a master was teaching and was simply thunderstruck by what happened. She never teaches more than four at a time but this time there were only two, her preferred number of students and I learned so much and experienced so much.
She is also an holistic practictioner and may have some hair ideas... she is trained in many therapies...
I have found that while Topomax does not cause any negative effects unless I stop taking it for any length of time, the Tegretol is devastating to my system. Even when I break it down into four doses, wakening in the night to take it... well that isn't hard as I am not much of a sleeper anyway LOL but if I were able to sleep that night the alarm going off was annoying and it wakens my husband which is unfair...
besides he is aware of the risks associated with the drug and is extremely concerned about it so that is adding to his stress... and his stress levels are high enough as it is with this nonsense.As my emergency appointment with the neuro is coming up, the one booked in January, I thought maybe I had better start taking it again, even if in low doses so it would show up in the blood tests, so he can't scream non-compliant and blame the changes and progression on my non-compliance before I get to tell him that I have discovered the co-relation between the drug and intensity of seizure activity...
as soon as I start taking even a low dose people who know me comment on it -- my eyes, my walking, my speech, articulation, so many things change.
One friend can predict to within five hours when the seizure will occur and whether it will be daytime or nocturnal....
I suppose when it was discovered it was a great improvement over the drugs of the time as they are really threats to the person taking them, but there are surely better drugs out there?
The only other med prescribed for the epilepsy is the clobazam... after all this man has not had time to see me in six almost seven months...In the meantime I have decided to take some control..
I began seeing a reiki practitioner regularly about the time I ditched the tegritol and until I decided last week to try the tegritol for a while, I was five weeks without a nocturnal seizure and have not had any of those marshmallow saranwrap type days in longer than that...
It was just before I ditched the teg completely (I was still taking it just before I went to bed thinking that while I was sleeping or trying to sleep then I was 'safe' so to speak, didn't have to worry about slurring of my speech, staggering when I walk, or any of the things that happen during the day because I would not be doing them )that I had that first falling down seizure...
no warning, didn't even know it had happened until I came to and was trying to get up and couldn't...
I simply could not breathe everything hurt so much..
My primary was in emerg that day (he spends one day a week there and I always seem to do something bizarre when he is there, thank heaven!!!) and called Ottawa and the neuro who said this was just a progression and he was not surprised...
there was no flailing of limbs during it, just as if I had been hit on the head and fell forward unconscious onto the pavement... just what one wants to do on a sunny spring day in mid-town small town Ontario... gives the locals lots to talk about...
My doctor was furious and has decided that we are changing neuros if he does not get some answers and soon... and a change in treatment that stops that constant occurrence...
He thinks that an increase in Topomax and dumping tegritol is a good start because the one seems to work and the other seems to be anything but help but he says there has to be something else that can be done and this is no way to provide quality of life...
seems to me I had heard that somewhere before <s>When I left the hospital I went straight for my first reiki session, for one reason I didn't have any part of me that didn't hurt... no broken bones amazingly... but bruises... I had to go for all sorts of tests before I left emerg including an echocardiogram because of this stupid heart murmur.
I had fallen so hard I had bruised the muscles around the heart... and cracked some ribs but nothing broken...The reiki session really helped me and Jen has been seeing me weekly sometimes twice weekly since. One session she had a second practioner with her and it was incredible -- that was after my visit to the nerve chappie who sent the currents of electricity into my leg to see which nerves were blocked and found that not only are most of them blocked the muscles are damaged because of it, there was no feeling at all, so he decided to test the left leg as a sort of control... there is lots of feeling in it... they heard me yell in Montreal!!! ...
since that session I have not had the excruciating pains in the leg wakening me and it has been ten days at least... I no longer limp... oh, it won't last forever, but as long as I can keep going and it works for a while, I can put off the surgery on my spine and I do not want any more invasive stuff if I can help...My next step in my control battle plan is to learn about other alternative therapies and how they can help me take control...
I am not about to throw over the conventional medical care, but there are therapies out there that made sense centuries ago and that can work with today's world, we just chose to forget them...It is my life; I do not choose to sit here and wait until some doctor remembers that he has this patient and maybe he should see if she is alive or dead...
The Buddhists say that one must live in the moment as my Buddhist friend is always telling me...
well, I decided that the moments flow by too quickly not to live them, because they don't come back for a second chance to live them when we are feeling better...Me? I feel great... just some days are greater than others. In the meantime, I feel even better enjoying the moments because I have taken them back for me... and Kodak shares are up <g>
I am also seeing a speech path again because of the speech problems now that she knows it is the left temporal lobe and the frontal lobe involved she knows what to do...
she has been waiting to hear from the neuro since December... I was in for a follow-up on the throat problem I have and was able to tell her... so away we go...Perhaps by the end of the month I shall have a better balance of medications, or a new specialist...
but whatever, I shall be running the show this time...
not sitting or lying there letting someone else decide it all for me...meanwhile I shall ask Jen and some of the others how we can help M's hair and post you about it...
and 200 is really low... it won't affect weight greatly apparently although it certainly started affecting mine when I began taking it... so you don't have to worry about moving up another 50 to 100 mg really...
400 and up is serious therapy I think from what I have experienced and heard...
but maybe not...kat
Posted by ed_uk on June 12, 2005, at 11:07:13
In reply to Re: Kat and everyone » stresser, posted by headachequeen on June 12, 2005, at 9:22:28
Hi Kat,
>clobazam
How do you like clobazam? Do you have any side effects from it?
Kind regards,
Ed.
Posted by stresser on June 13, 2005, at 16:34:26
In reply to Re: Kat and everyone » stresser, posted by headachequeen on June 12, 2005, at 9:22:28
I'm wondering if increasing my topomax will help me with my shifting moods. I seem to be going from normal to angry much to often these days. Things are irritating me agian, and I haven't been that way in quite a while. I say things I don't really mean at times, and I have to stop doing that. What do you think? -L
Posted by rainy on June 13, 2005, at 19:44:51
In reply to Re: Kat and everyone, posted by stresser on June 13, 2005, at 16:34:26
Hi, L. Aside from it being awful summer (it's been in the 90s here in NJ for over a week,) the kids are home, and there are all sorts of stresses hidden in these months of "fun" we don't really expect. Also, are you taking an AD along with the Topamax?
I find that at 400 mgs of Topamax my moods are pretty stable at last, but I can still become irritable and that heart of stone settles right in when I least expect it to. Also, I swear plenty. An antidepressant helps and that's sort of weird with BP II.
Is your pdoc open to increasing or adding a medication? Could you shove the kids off to camp?
rainy
Posted by headachequeen on June 16, 2005, at 8:15:25
In reply to Re: Kat and everyone » headachequeen, posted by ed_uk on June 12, 2005, at 11:07:13
> Hi Kat,
>
> >clobazam
>
> How do you like clobazam? Do you have any side effects from it?
>
> Kind regards,
> Ed.
Thinking back I may have had trouble in the early days...
I am not sure what I thought at first but I was going to give it a fair try in hopes it would work and replace the tegretol.. ha!... started out taking it only once a day one tablet and I forget the strength... that was when I was released from hospial.. then three weeks later, when I went in for follow-up, they increased it by halp a tablet a week to two tablets in the evening then by a half-tablet in the morning for a week at a time to a tablet a morning and I have yet to notice any side effects...
there was a long list given including appetite suppressant issues although it said some people didn't have any appetite issues and others gained.. now that would be MY luck sigh..
I have been on it since early November and so far, so good...but I am still supposed to take tegretol....arrgghhhh
kat
Posted by ed_uk on June 16, 2005, at 9:10:07
In reply to Re: Kat and everyone » ed_uk, posted by headachequeen on June 16, 2005, at 8:15:25
Hi Kat,
Thanks for your reply :-)
Is the clobazam working well to prevent your seizures??
~Ed
Posted by headachequeen on June 16, 2005, at 22:39:01
In reply to Re: Kat and everyone » headachequeen, posted by ed_uk on June 16, 2005, at 9:10:07
> Hi Kat,
>
> Thanks for your reply :-)
>
> Is the clobazam working well to prevent your seizures??
>
> ~EdHi Ed, you are welcome and I hope the answer was of some help :)
Between the topomax and the clobozam the seizures are at bay right now and I hope things stay that way for a long while;
soon as I add the tegretol, which is supposed to be the main anti-seizure med, back into the equation, everything goes completely out of whack...
the latest experience being this 'progression' to the fall flat on your face unconscious routine...
twice with that experience was enough to last me for three life-times...
since then I have had two of the nocturnal seizures and LOL they were a relief, then the other morning, perhaps a week ago, I could not be wakened and when finally I 'came to' I had no idea where I was or who I was or who or what any one or thing was...
so that was it again for the tegretol and at that point I had tried taking 50 mg a day... supposed to be on 1200 mg a day....
but I cannot use it at all...
with the clobazam - 30 mg a day - and the topomax I have none well, hardly any, and very rarely, of the nocturnal seizures and none of the daytime marshmallow experiences (as if I am trying to fight my way through a room full of cotton wool or marshmallow to try and be heard or to talk or do anything at all..
someone described it once as a saran wrap state..
nor do I have fugue states..
so I think it makes more sense to increase the topomax and the clobozam although it does have a drowsy effect according to one of the neurology residents in the hospital...
although it doesn't seem to make me sleepy when I take it in the morning...
If I miss the topomax for any reason, I know it in very short order...
and if I skip the clobozam for more than two doses I suspect I would begin to realise it too..
kat
Posted by ed_uk on June 17, 2005, at 7:36:49
In reply to Re: Kat and everyone » ed_uk, posted by headachequeen on June 16, 2005, at 22:39:01
Hi Kat,
>soon as I add the tegretol, which is supposed to be the main anti-seizure med, back into the equation, everything goes completely out of whack...
Perhaps the Tegretol is interacting with the clobazam and/or the Topamax. Tegretol seems to lower the blood level of Topamax in some people........and might theoretically decrease its effectiveness as a result. Also, Tegretol reduces the blood level of clobazam. Theoretically, this might result in withdrawal seizures. On the other hand, Tegretol increases the blood level of norclobazam - the active metabolite of clobazam. As a result, the interaction between clobazam and Tegretol is of undetermined importance.
>the latest experience being this 'progression' to the fall flat on your face unconscious routine...
Gosh!
>I think it makes more sense to increase the topomax and the clobozam.......
I agree :-)
Kind regards,
Ed.
Posted by headachequeen on June 17, 2005, at 21:23:39
In reply to Re: Kat and everyone » headachequeen, posted by ed_uk on June 17, 2005, at 7:36:49
> Hi Kat,
>
> >soon as I add the tegretol, which is supposed to be the main anti-seizure med, back into the equation, everything goes completely out of whack...
>
> Perhaps the Tegretol is interacting with the clobazam and/or the Topamax. Tegretol seems to lower the blood level of Topamax in some people........and might theoretically decrease its effectiveness as a result. Also, Tegretol reduces the blood level of clobazam. Theoretically, this might result in withdrawal seizures. On the other hand, Tegretol increases the blood level of norclobazam - the active metabolite of clobazam. As a result, the interaction between clobazam and Tegretol is of undetermined importance.
>
> >the latest experience being this 'progression' to the fall flat on your face unconscious routine...
>
> Gosh!
>
> >I think it makes more sense to increase the topomax and the clobozam.......
>
> I agree :-)
>
> Kind regards,
> Ed.
Ed, thank you for this information..There is so much surfacing about the wretched stuff...
aspirin interacts with it to increase the effect of it enough to put a person into overdose mode, even enough to cause statis elepticus... and that can be fatal...
certain antibiotics cause an overdose reaction when blended with tegretol... bringing on dizziness, slurred speech, loss of concentration and focus, inability to carry on conversation because the person can not make intelligent speech patterns, inability to walk properly, tonic clonic seizures in some people, fugue states....
for that matter aspirin can do these things too...come to think of it, I remember hearing in the fifties that if aspirin had been discovered then it would be a prescription pharmaceutical but then it was too late to change it... no wonder!!!
some doctors claim that certain pain killers interact badly with tegretol...
it is a scary little thing!!!
but topomax and so far the clobazam have not done any of these things to me...
as long as I stick with them, I can do the things I love to do...
my writing, my photography, training, agility!!!!LOL, some tracking (I pick the train with some degree of intelligence) and I do not go wandering out into the middle of rivers and balance on rocks with my camera to try and get the shot I want... but it is a far cry from being unable to take a snapshot a few months ago...
I am even thinking of some gentle rock scrambling later this summer if the weather is not as hot as the past week or so... back-packing and hiking and overnight camping to get the early morning woods and water photos I want...
as in, LIVING!!!
it was not a thought last fall or summer...
and I had begun to think that only simple obedience training and beginner agility training and baby tracking classes were my future...
I did a serious tracking class with one of my girls and we aced it a few weeks ago (before the fall down on my face routine started and without tegretol of course but I did come home with a really bad lung infection... all that wet swampy weather :(
but I got through it and we passed a level that we only dreamed about a few years ago and did something I didn't dare dream of doing again because I had let this doctor and this condition convince me that I was doomed to a new life-style...
and tegretol had really pulled the pins out of the old life-style...
spent eleven hours shooting a wedding a month ago
and that of course was without tegretol...It reminds me of Superman and kryptonite....
It is interesting to note that, while I was on tegretol alone, and they kept increasing the dosage, I kept on having the seizures, often three times a week, sometimes twice in the same night...
as my husband is a lab technician for a firm that runs 365 days a year and 24 hours a day with the lab people on twelve-hour shifts unless this happened when he was at home, he didn't notice and this condition was controlled enough that until a year or so before he retired he had no idea I had epilepsy at all (I was born with it!!!)
Then there was a subtle change and tegretol came into the equation, when the drastic change occurred, there was the introduction of constant tests and more tegretol and with the increase in tegretol there was still no control...
when I mentioned my migraines, the neurologist tore up the prescription he was writing to increase the dosage, and wrote one for topomax and that seemed to somehow increase the control... no more two-a-night sessions anyway and sometimes a week or more between seizures for a while...
then something upped the ante and away we went...
and everyone was still trying to decide what to do and what to prescribe...
the clobazam was added and then increased following a roughly fourteen hour episode of statis early last winter... what an abuse to the body that is...
at the same time they cut the tegretol way back and increased the topomax slightly...
then slowly increased the tegretol... and the seizures returned...In hospital they cut off the teg entirely for 24 hours, then reintroduced it at a moderate dose 400 mg and I had two seizures that night... despite the topomax and the newly introduced clobazam... so right away they started to up the clobazam...
it seemed to me that someone should have thought right then of taking away the tegretol, but instead, they cut it off for another 24 hours and started again with the same result, this time with a severe seizure...
well, seems to me that if they can't put it together, they should have asked me for advice...
actually they didn't need to; I kept offering it for free...however, at this point I am seizure-free since the morning I came to with no idea who what and where and that is the way I plan to keep it, and I am going to the appointment on Wednesday next ready to fight for my rights for a different medication and some sound answers as to what is happening...
otherwise, it is a new doctor and something that will work for me...
and someone who is available when there is an emergency, not someone who arranges to fit me in six months after my system goes into frenzy...every time I walk down town and pass the place where I had that first fall, and see that metal pillar that holds up the (we would call it 'porte-cochere', where cars are covered to let passengers disembark in snow and rain and stay dry), and remember that my head was a mere couple of centimetres from that steel and how blessed I was not to have my face smashed into the pavement or my head smashed into that pillar...
no I want something done to give me freedom to live my life and do what I do best, and to do it now while I am young enough to enjoy it...
Flirting with death because of this thing twice within six months is pushing it too close for me...So much for living a calm and tranquil approach to life and not being angry... my reiki master might not approve, but one has to take control of one's own treatment or one is simply shoved into the corner while someone else gets the answers...
In the meantime, I keep looking for information and compiling my list of questions for him and keeping my calendar for him...
easier to mark the days there were no seizures since I saw him in December :(and I appreciate any info the people here can provide... every thing is so much help...
and the support here is such a blessing...thank you, Ed you knowledge of the interactions is very helpful...
Extremely so
kat
Posted by ed_uk on June 18, 2005, at 8:20:29
In reply to Re: Kat and everyone » ed_uk, posted by headachequeen on June 17, 2005, at 21:23:39
Hi Kat,
Gosh! You need a neurologist who will listen to what you are saying.
Tegretol can lower the Topamax blood level by about 40%. See the interaction table......
http://www.rxlist.com/cgi/generic2/topiram_ad.htm
It's near the bottom of the page.
Kind regards,
Ed.
Posted by bridgey1128 on June 18, 2005, at 9:23:40
In reply to Re: Kat and everyone » ed_uk, posted by headachequeen on June 17, 2005, at 21:23:39
With all the interactions with the Tegretol I am surprised that they haven't taken it off the market. How many people who take that sort of drug take JUST one? They freaked out about Bextra and yanked it but it seems this would be more dangerous. Down here we call them thangs a "porta cove". I do believe it's porte-couvre, otherwise known as a covered drive up. hehe
Posted by iris2 on June 18, 2005, at 12:53:38
In reply to Re: Kat and everyone, posted by bridgey1128 on June 18, 2005, at 9:23:40
It really almost all has to do with money. I would be interested if someone has the time and inclination to investigate exactly why amineptine was taken off the market. Most especially as compared to the side effect profile of most of the other antidepressants on the market at the time and the efficacy of amineptine as compared.
It is most interesting that the FDA was able (at lest from what little information I have read) to coerce first France then other countries to take it of the market.I could be off base about this but if one considers the timeline of Viagra coming onto the market and the possible side effect of amineptine having a positive effect on orgasm it appears very suspect that it was forced off the market just as Viagra was about to be approved. COINCIDENCE, I THINK NOT!!!!!
When I read some of the side effect profiles of some of the other antidepressants and compare them to what I know of amineptine well. I wonder why no one has made more of a stink about it. Perhaps I just am talking above my head but I think not.
I am not familiar on how to use Blogging but if someone is I would think this would be a good way to start an in depth investigation into this.Would someone please get in touch with me if they know anything about this also if they have any interest in starting a blog about it and point me in that direction?
Thanks,
irene
Posted by Declan on June 18, 2005, at 16:56:19
In reply to Incentives for meds and Amineptine, posted by iris2 on June 18, 2005, at 12:53:38
Hi Iris
What about minaprine too? It's the minset isn't it? Anything that *might* become a drug of abuse. The whole war on drugs thing........
Declan
Posted by ed_uk on June 18, 2005, at 21:09:12
In reply to Incentives for meds and Amineptine, posted by iris2 on June 18, 2005, at 12:53:38
Hi Irene,
How are you doing? You haven't posted in a while. I think you were planning on trying naltrexone. Did it work out? I hope I'm not confusing you with someone else :-S
Kind regards,
Ed.
Posted by headachequeen on June 18, 2005, at 21:44:30
In reply to Re: Kat and everyone » headachequeen, posted by ed_uk on June 18, 2005, at 8:20:29
> Hi Kat,
>
> Gosh! You need a neurologist who will listen to what you are saying.
>
> Tegretol can lower the Topamax blood level by about 40%. See the interaction table......
>
> http://www.rxlist.com/cgi/generic2/topiram_ad.htm
>
> It's near the bottom of the page.
>
> Kind regards,
> Ed.
>
Well, Ed, in a way this one is a major step up...
the first neurologist, the one who actually diagnosed the problem --- I had been diagnosed as a child but never told (my mother views any illness as a sign of weakness and an affront to the family) and as it seemed to never really interfere why bother with it, then again as a teen-ager and when I was pregnant with my son... two drastic seizures brought about the diagnosis, but everyone around me thought that I had fainted...
ambulance called and all that but it was attributed by others to other causes and I managed to keep it all from the world until things began to change for the worse in the last ten years..
then dramatically so ...
enter the first neurologist, who is actually head of the head-ache institute and really good at that stuff!!! but he did recognise the seizure activity in the eeg and start the tegretol then add the topomax because I mentioned my migraines...
no more migraines but the seizures were never under control...so he referred me to this one who is the head of the epilepsy centre in this part of the province and considered by those in the know to be the leading person in this part of the country...
oh joy... I think my vet could do better at times...
my primary care insisted on a referral to someone who could deal with things better and this is the one to whom I was referred..
I realise that had the referral not happened, when that statis episode occurred, I would not be typing this today and I am grateful and give the man full credit for saving my life, although it was my own primary care physician who stabilised me enough to have me transferred to the other hospital for treatment and tests, in consultation of course with the neuro,
but in the meantime, here we are with this big nothing happening to accomplish anything...so now I am armed with information I can use...
and I thank you hugely for the help....
it is summer and there are so many things screaming for my attention and I would like to be able to be there...
my latest ambition is a folio sort of book on hands at work...
have some photos of a jewellery designer working on his craft, including Faberge eggs in need of repair and an elderly woman peeling potatoes, and so on and so on...
and these old abandoned farm buildings and houses in this horrendously hard farming area where the evicted crofters came when they were replaced by sheep... portraits of the growth of a country...
they have to be taken and I have to be able to stand and lie and kneel STILL-ly to take them ...
blurred vision and mind cannot do it, nor can wobbly hands and wobbly mind...so, tegretol and I are now really at war... and I am better armed...
and another day with no problems... it is wonderful...
and still no headaches...
2 and a-half years...
now, what has tegretol done for me lately???? LOLthanks again and blessings
kat
Posted by ed_uk on June 18, 2005, at 22:19:56
In reply to Re: Kat and everyone » ed_uk, posted by headachequeen on June 18, 2005, at 21:44:30
Hi Kat :-)
>and I thank you hugely for the help....
You're welcome.......and thank you for your interestings posts :-)
Kind regards,
Ed.
Posted by iris2 on June 18, 2005, at 22:36:27
In reply to Re: Incentives for meds and Amineptine » iris2, posted by ed_uk on June 18, 2005, at 21:09:12
Ed,
Not sure what I have tried since I was on this board last. Problem is that my interstitial cystitis has become "bad" in the past year and I have been trying to control the pain and frequency with oxycontin. Antidepressants almost always cause it to flare up again. I had a DSMO treatment, which made it a bit worse. I wanted to have several more but my doc refused. She then did a bladder distention, which several years back I had done for diagnostic purposes. I do not know what she did but since then I have had to urinate between 20 and 35 times a day, most with only two days exception when I was able to get a maximum of two hours sleep without interruption. So right now although I did find a clinic in Philly and another worthless doc in Pittsburgh, I am fairly hopeless and even more depressed if that is possible. I can not function. Even going to the grocery is quite the ordeal. At least with the pain I was able to take oxycontin and have some control over it for a while and it used to help with the frequency too. Not anymore. The stupid surgicl proceedure got rid of most of the pain ( which was somewhat controlable with oxycontin) but made the frequency/urgency much worse and I have almost no control over that. I have had depression for 16 years and this is different. If I could only get a few nights of uninterrupted sleep it would at least start to make a difference.
I guess the best thing about it all is that growing up the way I did I constantly have had extreme guilt about my inabilities (depression) Now that I have such a huge physical limitation I just don't have the energy to feel guilty about any of it any more. I know I try my best. If it is not good enough for others well let me also learn their limitations and not be judging them as they do me.
I know you did not expect my life's story. Not sleeping again and was grateful someone cared enough to ask. Sorry to rope you in!
By the way I remember you asking a lot of questions on this site and I am sure knowing me I asked something about you but I do not remember. How are you doing? What is your diagnosis, or what do you think it should be? IS anything helping you?
Amineptine helped me for a while but did interfere with my bladder after a while. IF my bladder was better and it was available I would try it again. As it stands even if I had no limitations I have tried so many antidepressants I do not know what or if I would even bother with another. I guess I am not in a situation to really evaluate what my decision would be.
Hope all is well and keep in touch. Human contact helps me immensely. I need to feel nurtured and know that people care.
I care about you even if I do not know you personally. We have crossed paths several times and so you are someone in my life and I hope the best for you,
irene
keep in touch I always remember you asking a lot of questions about all different kinds of seemingly unrelated things. Just an observation. I always wondered if you were just interested in knowing what helped others and it did not always matter if it related to you. Nothing wrong with that.
Posted by ed_uk on June 19, 2005, at 10:37:23
In reply to Re: Incentives for meds and Amineptine, posted by iris2 on June 18, 2005, at 22:36:27
Hi Irene,
I'm sorry to hear what you're going through.
Thank you for your babblemail, I will reply soon :-)
>Antidepressants almost always cause it to flare up again.
Including TCAs such as nortriptyline? I vagely remember that you tried Cymbalta but it didn't help - I might be getting mixed up though.
What effect do you get from noradrenergics such as reboxetine?
>I have been trying to control the pain and frequency with oxycontin......
I'm glad to hear your pain is under control. What dose of OxyContin do you take? Does the OxyContin affect your depression? Interestingly, a few babblers (eg. Elizabeth) have taken buprenorphine for chronic pain + depression and found it helpful. Ever tried it?
>The stupid surgicl proceedure got rid of most of the pain ( which was somewhat controlable with oxycontin) but made the frequency/urgency much worse and I have almost no control over that.
Have you tried solifenacin (Vesicare)??
>How are you doing? What is your diagnosis, or what do you think it should be? IS anything helping you?
My diagnosis is OCD. I'm taking citalopram 60mg at the moment, it seems to be helping but I don't like the side effects :-S
>keep in touch
I will :-)
>keep in touch I always remember you asking a lot of questions about all different kinds of seemingly unrelated things. Just an observation. I always wondered if you were just interested in knowing what helped others and it did not always matter if it related to you.
I sometimes ask questions that are relevent to me personally. Other times I just discuss things that I'm interested in - even if they're not relevent to me at all :-)
Kind regards,
Ed.
Posted by headachequeen on June 20, 2005, at 17:17:37
In reply to Re: Kat and everyone, posted by bridgey1128 on June 18, 2005, at 9:23:40
> With all the interactions with the Tegretol I am surprised that they haven't taken it off the market. How many people who take that sort of drug take JUST one? They freaked out about Bextra and yanked it but it seems this would be more dangerous. Down here we call them thangs a "porta cove". I do believe it's porte-couvre, otherwise known as a covered drive up. hehe
Bridgey, some do take only the one...
and, from the reading I have done about the alternatives to tegretol, those before topomax, there are others out there that are far more dangerous...
anything I read describes topomax as a sort of support to tegretol...
but I do so much better without the tegretol...
when I had to be on antibiotics, two of them, for the lung infection a couple of months ago, I had to stop taking tegretol as the one antibiotic increased the effect of the teg, creating statis episodes...
as I had to have the antibiotic, the neuro told my doctor to stop the teg for a while... and that is when many of the other symptoms stopped and the first clue hit me..
every time I tried using it, things went out of control...
another round of antibiotics and no tegretol and again no serious problems...
seems only my doctor and I can add...
the neurologist seems to have flunked basic math..and what is it doing to other people???
I find myself chuckling when I hear people worrying about little ol' topomas <s>
kat
Posted by ed_uk on June 20, 2005, at 17:33:19
In reply to Re: Kat and everyone » bridgey1128, posted by headachequeen on June 20, 2005, at 17:17:37
>anything I read describes topomax as a sort of >support to tegretol...
>but I do so much better without the tegretol...Hi Kat,
In the UK, Topamax is now approved for use (on it's own) to treat epilepsy.
'Topamax is indicated as *monotherapy* in adults and children aged 6 years and above with newly diagnosed epilepsy who have generalised tonic-clonic seizures or partial seizures with or without secondarily generalised seizures.'
'Topamax is indicated as adjunctive therapy for adults and children over 2 years of age who are inadequately controlled on conventional first line antiepileptic drugs for: partial seizures with or without secondarily generalised seizures; seizures associated with Lennox Gastaut Syndrome and primary generalised tonic-clonic seizures.'
In some patients, Topamax works well on it's own!
~Ed
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