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Dr. Bob is Robert Hsiung, MD,
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Posted by bridgey1128 on June 20, 2005, at 18:54:28
In reply to Re: Kat and everyone » ed_uk, posted by rainy on June 20, 2005, at 18:30:17
I have decided to go back off the Topomax again. I just can't handle feeling like this. I can't sleep and that has never gone away. I still have an appetite so I know that it won't help with that. I am better off going back to the Dr and getting some phentermine. I felt SO much better being off the Topomax. Maybe a little more moody but DEFINITELY happier. I am already starting to feel more depressed and apathetic and I just can't handle it so I am going to go off for now.
Posted by rainy on June 20, 2005, at 19:01:52
In reply to Re: Kat and everyone, posted by bridgey1128 on June 20, 2005, at 18:54:28
To Ed--No, I haven't. It was never really offered. And Bridgey, what phentermine (sp?) Is that a mood stabilizer? What kind of side effects does it have?
Ed, I'm scared to death of weight gain.
rainy
Posted by ed_uk on June 20, 2005, at 20:24:12
In reply to Re: Kat and everyone, posted by rainy on June 20, 2005, at 19:01:52
Hi Rainly,
>what phentermine (sp?)
Phentermine is a stimulant and appetite suppressant. It is similar to amphetamine.
~Ed
Posted by headachequeen on June 20, 2005, at 20:35:53
In reply to Re: Kat and everyone » headachequeen, posted by ed_uk on June 20, 2005, at 17:33:19
> >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!
>
> ~EdSalut, Ed!
and dare I hope that when I see the neurologist this week he will have discovered that he is in a new century??? that there have been new discoveries in treatment made since 1893....I can but hope. I am certainly going with the intention of making my needs and intentions known and not with any intention of sitting back and letting him play his little game of here I am to spend a few minutes and pretend that I am interested in the patient then leave and do something more interesting...
I am arming myself with a calendar of events, information and questions...
and he will squirm until I have answers...
and until the topomax is eliminated and/or replaced with something that does not make my life chaotic...
an increase in the topomax to make the minor symptoms leave and eliminate the fearfulness...
that would make sense...
kat
Posted by headachequeen on June 20, 2005, at 20:39:31
In reply to Re: Kat and everyone, posted by rainy on June 20, 2005, at 19:01:52
> To Ed--No, I haven't. It was never really offered. And Bridgey, what phentermine (sp?) Is that a mood stabilizer? What kind of side effects does it have?
> Ed, I'm scared to death of weight gain.
> rainy
>Rainy, when the epilepsy was playing games and people thought it might be a form of depression, perhaps bipolar, my doctor suggested lithium... told me to think about it as it would make severe changes...
suggested discussing it with a couple of close friends who would monitor the situation and tell me and him if my personality began to change drastically,
then the psychiatrist who admitted me to hospital told me that the lithium would have wiped out my personality completely....
just a thought
kat
Posted by headachequeen on June 20, 2005, at 20:48:16
In reply to Re: Kat and everyone » ed_uk, posted by rainy on June 20, 2005, at 18:30:17
> Ed, is Topamax approved for use as a mood stabilizer in the U.K? I'm using it for that but it didn't work consistenly well untl I got
> up to 400 mgs. Now it's seems to be doing a good job and many of the earlier cognitive problems I experienced are fading.
> People keep reminding me it's off label, including my pdoc. He would rather have me on lithium. I'm hanging on to Topamax as long as it works. It does make me clumsy--there's a rumor going around town that I have a problem with alcohol because of my gait which worsens in the heat.
> rainy
>Oh, rainy,
a problem with alcohol because of your gait????
people need to find something to occupy their minds...
or maybe they need to find minds to occupy...I have a gait problem frequently and it is nothing to do with alcohol or topomax... to my amazement it is not even related to the epilepsy...
I figured for the past few years that the epilepsy was causing it and the severe pain in my leg so didn't even ask about it..
turns out it is related to a back injury from my teens...
a part of my lower spine was injured and the nerves to my right leg are compressed and this means there is a blockage or something and the muscles in my leg are atrophying... if I sit for any length of time, say long enough for a light lunch then stand up I limp and cannot turn when I walk... so I walk into a straight line, perhaps into a wall if I cannot turn in time...
horrid pains waken me if I manage to sleep, and when I am walking; I can not walk with an even gait on most days... and I am sure I look like a sailor who just made shore after eighteen months on a sailing ship in rough seas or one heading back to ship after three days' shore leave but the muscles have atrophied because the nerves are clamped so badly...
let them come and talk to me about gait and alcohol problems...
I'll send them for a nerve conductivity test and make sure the specialist tests a part of them that has nerves that are not blocked or pinched...People who have nothing better to do than imagine the worst of others should do it somewhere else...
kat
Posted by ed_uk on June 20, 2005, at 21:02:38
In reply to Re: Kat and everyone » ed_uk, posted by headachequeen on June 20, 2005, at 20:35:53
Hi Kat,
>until the topomax is eliminated and/or replaced with something that does not make my life chaotic...
Topamax makes your life chaotic?
~Ed
Posted by rainy on June 21, 2005, at 9:58:14
In reply to Re: Kat and everyone » headachequeen, posted by ed_uk on June 20, 2005, at 21:02:38
For Kat--Thanks, Kat--At first I was horrified because my husband learned of this rumor at a minister's meeting and "problems with alcohol" have been the bane of this congregation's life wiith its religious leaders. Then I thought it was sort of funny and completely understandable.
Last year we went through the discovery that Topamax can cause instability and make us stagger around and crash into things. I'm just tired of explaining. It was only a rumor of a rumor anyway, but you're right. Wasn't it Bambi's mom who advised not to say anything if you can't say anything nice? (What a dull world that would be!)
rainy
Posted by bridgey1128 on June 21, 2005, at 14:45:22
In reply to Re: Kat and everyone, posted by rainy on June 21, 2005, at 9:58:14
I didn't realize that was a side effect of the Topomax. I have been Mrs. Dropsy Fingers when I have been taking it and trip over my own feet. Fall over for no reason and I have ALWAYS had good balance! It's interesting that you said Phentermine is a stimulant. I had never heard that it was a stimulant, only an appetite suppressant. When I took it a number of years ago I never felt hyped up. It never did anything much, but then again, I didn't take it long. I wasn't very patient. The Xenical works well but my insurance won't pay for it and it is rather punishing when you eat too much fat. I think I am just going to go off drugs and if I feel too bad then I will find something different. I was hoping that the Topomax would work for me, but I was wrong. It helped for some time but then it dulled me and made me apathetic, not to mention the brain f*rts that just DID NOT go away, and it keep me from sleeping well. I have just been plain ol grouchy since I went back on it and it has depressed me more than anything...oh well
Posted by iris2 on June 22, 2005, at 13:46:25
In reply to Re: Incentives for meds and Amineptine » iris2, posted by ed_uk on June 19, 2005, at 10:37:23
> Including TCAs such as nortriptyline? I vagely remember that you tried Cymbalta but it didn't help - I might be getting mixed up though.
Not sure about the TCA's as I tried them years before being diagnosed with "Interstitial Cystitis" Cymabalta only made me extremnely nervous Did nothing else.
> What effect do you get from noradrenergics such as reboxetine?I tried to look up noradreneergics not sure. If I could have taken Effexor I am absolutely sure it would have helped a lot. For the first five weeks i took it I wa calmer and more at ease than I have ever been in my entire life before or since. But I have tried to take it several times again and now cannot even take one pill without flare up. Reboxetine helps me a little , I usually took it in conmbination with Parnate, Marplan or Moclobimide. Parnate and Marplan helped me a lot for several years until they "pooped out" which is why I was adding other things to them and alternating them.
>
>
> 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 oxycontin is prescribed by my p-doc who wants me to take it even if I do not have pain as an antidepressant. It does help some but just enough to maybe help me get through a day without being too emotional or something. No I never heard of buprenorphine I will look it up and discuss it with my p-doc. Thanks.
>
> >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)??I might have I have tried many and do not remember or even know them all. I just tried Sanctura and it was horrible. It made it all worse.(Similar drug)
Take care,
irene
Posted by iris2 on June 22, 2005, at 13:56:15
In reply to Re: Kat and everyone » rainy, posted by headachequeen on June 20, 2005, at 20:39:31
> then the psychiatrist who admitted me to hospital told me that the lithium would have wiped out my personality completely....
> just a thought
> katI have known many people on Lithium including my best friend. I do not know whay your psychiatrist was talking about. I have never read nor ovservered nor heard anyone taht was taking it complain of personality changes.
irene
Posted by ed_uk on June 22, 2005, at 14:55:15
In reply to Re: Incentives for meds and Amineptine » ed_uk, posted by iris2 on June 22, 2005, at 13:46:25
Hi Irene,
>Not sure about the TCA's.....
How would you feel about trying a TCA? How did they affect you when you tried them before?
Kind regards
~Ed
Posted by Chairman_MAO on June 22, 2005, at 15:52:22
In reply to Re: Incentives for meds and Amineptine » iris2, posted by ed_uk on June 22, 2005, at 14:55:15
Buprenorphine is useless for chronic pain, mostly, due to its "ceiling effect". Moreover, it stimulates the ORL1 receptor, which significantly undermines the analgesia induced by its partial mu-agonistic action.
Posted by iris2 on June 22, 2005, at 17:51:34
In reply to Re: Incentives for meds and Amineptine » iris2, posted by ed_uk on June 22, 2005, at 14:55:15
Ed,
One I was alergic to and the other as I recall had a lot of side effects.
irene
Posted by ed_uk on June 22, 2005, at 18:03:44
In reply to bupe, posted by Chairman_MAO on June 22, 2005, at 15:52:22
Hi Chair,
>Buprenorphine is useless for chronic pain, mostly, due to its "ceiling effect".
It's sometimes useful for patients who only require low opioid doses.
>Moreover, it stimulates the ORL1 receptor, which significantly undermines the analgesia induced by its partial mu-agonistic action.
True :-(
Here's some info about the Transtec patch.......
Expert Rev Neurother. 2005 May;5(3):315-23.
Transdermal buprenorphine in the treatment of chronic pain.
Sittl R.
University of Erlangen, Pain Clinic, Krankenhausstr, 91054 Erlangen, Germany. Reinhard.Sittl@kfa.imed.uni-erlangen.de
The transdermal matrix patch formulation of buprenorphine has been shown to be effective in managing moderate-to-severe cancer pain and severe pain unresponsive to nonopioid analgesics. Clinical trials have revealed that it is possible to switch from weak opioids or low doses of step III opioids to transdermal buprenorphine without any problems. With buprenorphine patches, the sublingual buprenorphine intake was dose-dependently reduced and was superior to placebo in this respect. The proportion of responders increased with the buprenorphine dose, and a higher proportion of patients receiving buprenorphine patches reported uninterrupted sleep for longer than 6 h compared with those receiving placebo. In a long-term, open, follow-up study in which the mean duration of treatment was 7.5 months, analgesia was rated as at least satisfactory by 90% of patients. Almost 60% of patients could manage their pain with one patch alone or with one additional sublingual tablet a day during the whole period of treatment, indicating a low incidence of tolerance development. The buprenorphine transdermal patch was assessed as user friendly by 94.6% of patients. In a postmarketing surveillance study, pain relief with transdermal buprenorphine was rated as good or very good by 70% of the responders. Postmarketing surveillance studies have shown that transdermal buprenorphine is also effective in the management of nociceptive and neuropathic pain, which some studies have shown to be relatively insensitive to mu-opioid analgesics, such as morphine. Transdermal buprenorphine was well tolerated. Most adverse events were either local reactions to the patch that generally subsided within 24 h or systemic events typical of treatment with opioid analgesics, such as nausea, vomiting and constipation.
~Ed
Posted by ed_uk on June 22, 2005, at 18:10:46
In reply to Re: Incentives for meds and Amineptine » ed_uk, posted by iris2 on June 22, 2005, at 13:46:25
Hi Irene,
>If I could have taken Effexor I am absolutely sure it would have helped a lot. For the first five weeks i took it I wa calmer and more at ease than I have ever been in my entire life before or since. But I have tried to take it several times again and now cannot even take one pill without flare up.
Do you think you might be able to tolerate Effexor if you started at a much lower dose and increased the dose gradually? You could start by taking a few pellets out of a 37.5mg capsule.
~Ed
Posted by headachequeen on June 22, 2005, at 19:52:33
In reply to Re: Kat and everyone, posted by iris2 on June 22, 2005, at 13:56:15
> > then the psychiatrist who admitted me to hospital told me that the lithium would have wiped out my personality completely....
> > just a thought
> > kat
>
> I have known many people on Lithium including my best friend. I do not know whay your psychiatrist was talking about. I have never read nor ovservered nor heard anyone taht was taking it complain of personality changes.
>
> irene
Lithium can change the personality according to my primary and according to the psychiatrists at the hospital especially if given to someone such as myself... It would simply cause my creativity and the bits and pieces that make me who and what I am to flatline and no more creative highs and crashes when things ended or didn't work...
it is like any other drug...
has different effects for different things...the idea had been to give it to me to stop the manic highs that were considered to be manic depressive when the manic highs were actually something that were my creative being simply flying high on success...
and that would have disappeared... I**** would have disappeared so to speak....kat
Posted by headachequeen on June 22, 2005, at 19:58:53
In reply to Re: Kat and everyone » headachequeen, posted by ed_uk on June 20, 2005, at 21:02:38
> Hi Kat,
>
> >until the topomax is eliminated and/or replaced with something that does not make my life chaotic...
>
> Topamax makes your life chaotic?
>
> ~EdI meant to say Tegretol...
argghhhhh all these t words...
topomas is what holds my life together some days....and just back by the way....
he has no problem with the no tegretol....
and suggested a new drug to replace it...
has no side effects....
maybe he will even prescribe it for mewhen he sees me again in six months.....
I have had it....
I will not go back in six months....
tomorrow I am explaining to my primary why I am through with the whole thing
this has taken me six months to find out that there is a drug to replace tegretol that is safe to take but we will try it in december....I am trying so hard to remember the Just for today I will not be angry of my reiki practitioner's vows....
and it is not working
kat
Posted by ed_uk on June 22, 2005, at 20:21:23
In reply to Re: Kat and everyone, posted by headachequeen on June 22, 2005, at 19:58:53
Hi Kat,
What drug did he suggest to replace Tegretol?
~Ed
Posted by bridgey1128 on June 22, 2005, at 20:38:36
In reply to Re: Kat and everyone » headachequeen, posted by ed_uk on June 22, 2005, at 20:21:23
Kat, manic highs and then crashes would indicate bipolar. People who are bipolar tend to be very creative and get much of their creativity from their manias. Then you get bored or it doesn't work fast enough, or onto another project that gets half done. It's usually about the excitement of newness and starting something and then the crash comes when it doesn't work like expected or takes too long...etc. That is one reason why I just hated taking my meds. I felt like my creativity was being sucked out of my brain along with my sense and sense of balance. If taking a med to "even me out" means that I will lose that part of me then I don't want be on anything. I have felt like doody every time I have taken something and I don't like it. Effexor was HOOOOORRRRIIIDDDDDD. Oh man, I wouldn't recommend that unless you are planning on staying on it forever! The withdrawl from it is unbelieveable. Even when you miss a single dose or are late..you usually start up with the brain shivers. I had a constant headache for about a month before I finally said NO MORE. That was before I was diagnosed with bipolar. Other than having a really CRAPPY day today, unrealated to coming BACK off the Topomax, I have slept like a baby and had SO much more energy! I couldn't believe how tired I was all the time until I stopped taking the Topomax.
Posted by iris2 on June 22, 2005, at 22:23:23
In reply to Re: Incentives for meds and Amineptine » iris2, posted by ed_uk on June 22, 2005, at 18:10:46
Ed,
THanks for the advice. But the four or five times I tried it after my first experience I began at very small doses. I believe 37.5 is the smallest dose. I was not able to take that anymore as my Interstitial Cystitis had developed much more. Inishally I had increased the dose fast because I was in the hospital where they were first begining trials of it and I wanted to get out. So I did not have problems at the smaller doses but I ended up at around a rediculous amount(cannot rmember but I do recall no one takes that much) Anyway they did not believe me that I had urinary problems because it was not a "side effect" Sent me in a taxi to the urology quack I was seeing at the time who just dialated my urethra as he had been doing for 3 years and sent me on my way. I told them all to go to hell and they suggested shock treatments. I had had two sets prior with no response. What idiots!!!!I left.
Thanks I do wish I could take it and if I do something drastic like have my bladder removed I might take it,
Irene
Posted by iris2 on June 22, 2005, at 22:27:34
In reply to Re: Kat and everyone » iris2, posted by headachequeen on June 22, 2005, at 19:52:33
Kat,
Okay if one is speaking of manic personallity or manic depression than yes of course Lithium would have an effect. Call it what you want"flatlining"I think you mentioned. But for those that "manic"phase is not complimentary to their lives but interfering or perhaps making it disfunctional than taking a moo stabiliser such as Lithium or several others would be a rather good idea.
irene
Posted by ed_uk on June 23, 2005, at 13:36:37
In reply to Re: Incentives for meds and Amineptine, posted by iris2 on June 22, 2005, at 22:23:23
Hi Irene,
Have you ever tried Lamictal for your depression?
~Ed
Posted by headachequeen on June 23, 2005, at 22:20:22
In reply to Re: Kat and everyone » headachequeen, posted by ed_uk on June 22, 2005, at 20:21:23
> Hi Kat,
>
> What drug did he suggest to replace Tegretol?
>
> ~Ed
Hi EdI am trying to remember, I think it is Limictil or similar sounding name... and if the lack of tegretol and reduced dose of topomax (as I am now getting more benefit from it!!!!! duh) don't make a difference, he will try that when I see him on the follow-up visit in January...
another of those 24 hour sleep deprived eeg tortures booked for 26 July and I get to hear what they find out in January...
I am truly fed up....kat
Posted by ed_uk on June 24, 2005, at 10:08:47
In reply to Re: Kat and everyone, posted by headachequeen on June 23, 2005, at 22:20:22
Hi Kat!
>I am trying to remember, I think it is Limictil or similar sounding name...
Lamictal (lamotrigine)
~Ed
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