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Dr. Bob is Robert Hsiung, MD,
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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
Posted by rainy on June 20, 2005, at 18:30:17
In reply to Re: Kat and everyone » headachequeen, posted by ed_uk on June 20, 2005, at 17:33:19
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
Posted by ed_uk on June 20, 2005, at 18:52:38
In reply to Re: Kat and everyone » ed_uk, posted by rainy on June 20, 2005, at 18:30:17
Hi Rainy,
>Ed, is Topamax approved for use as a mood stabilizer in the U.K?
No - it's just approved for epilepsy.
>Now it's seems to be doing a good job and many of the earlier cognitive problems I experienced are fading.
:-)
>He would rather have me on lithium.
Have you ever tried it?
~Ed
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. [email protected]
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
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