![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 23 of 23. This is the beginning of the thread.
Posted by delna on October 30, 2009, at 7:31:52
Hi all,
Hope people are doing well on their regimes (or improving at least).
**Hope the following doesn't embarrass anyone as it is quite personal and graphic (but medical)**Also it is VERY LONG and detailed but if you like the challenge of a medical mystery, you probably won't mind ;-) Plus I would be really grateful to you, if you did manage to read it. Thank you.
Okay, I have a really bizarre case I want to put before all the expert babblers here. I'm pretty desperate so I would really appreciate your thoughts.
The only medication that has EVER truly helped me in my 20 year battle with this illness (BP) has been Geodon. It changed my life- actually it allowed me live for the first time ever.
Unfortunately, I had to give it up because I developed severe genital nerve pain on it.(which may be TD) To date, no one can explain what happened or how the pain came about but I am 200% sure it was Geodon. For one thing, when I stopped it , it went away rapidly.
I desperately want to go back on Geodon and treat the pain aggressively (with nerve blocks etc) but I am afraid the pain MAY have a link with TD. If not, I will go back on it since I fear it is my only real hope.
I have currently put this case before a neurologist, pain specialist and 2 pdocs. Plus I saw at least 15 docs (neuros/psychs/gynacs) while I was having the pain but no one had a clue what it was nor did anyone link it to TD. Not even my specialist US pdoc who prescribed Geodon in the first place and was fully aware of this pain.
This is because what happened to me is undocumented and my particular case complicates the picture. It's only recently that I stumbled upon a 1994 paper in Neurology journal describing 1 or 2 cases of this.
'Oral and genital tardive pain syndromes.'
Ford B, Greene P, Fahn S.Incidentally, I have bought the full paper (if anyone wants to see it) but the key point is that of those 11 patients, 2 had some sort of genital pain (not really similar to mine), but still. All 11 patients also had full fledged TD. However, the authors postulate that for certain reasons, they believe that 'genital pain syndrome' can exist as a separate entity (without other TD symptoms) and is, in fact a manifestation of TD caused by APs.
Sounds straightforward right? Clearly it must have been TD..... BUT it is not so simple.
Why?
Because since childhood I have had a highly uncomfortable 'nerve sensation' in my genitals- in the exact same place the pain came. (gosh, this is embarrassing..) The sensation must have started when I was under 10yrs old (before I had ever touched a psych drug before) but I thought it must be normal and never spoke about it. I thought it was 'hyper-sexuality' for ages but because it is there 24hrs a day and is not associated with sexual thoughts, it is clearly not. Plus it is not the same as the hypersexulaity you get when you are hypomanic/manic (which I also have much experience with). This sensation is also there when I am depressed.I have been googling this forever and only recently came across 2 researchers who are studying this as a phenomenon in women.
One doctor described it and it as EXACTLY what I have. He calls it "Restless Genital Syndrome" (RGS)
'http://www.restlessgenitalsyndrome.com/en/index.html
Also known as PSAD (persistent sexual arousal syndrome) named so by the doctor who first documented it.In a nutshell this is a description of MY EXACT symptoms selectively taken from the "Restless Genital Syndrome" link.
'These women report weird sensations at the clitoris. The sensations consist of tingling and wave-like sensations, small shocks in or around the clitoris Women usually experience a close to orgasm sensation as if they are on the verge on getting an orgasm. Miraculously, while having these sensations, women do not long for or fantasize about sex. Unfortunately, masturbation or intercourse do not lead to a diminishment of the genital sensations. The sensations are usually present the whole day,
Restless genital syndrome makes a woman often completely desperate." etc etcVery importantly, this research doctor is linking this with restless legs syndrome (a movement disorder)
You may wonder why I am torturing you with this graphic info- there is a point I promise.
When I started Geodon 40mg, within a few doses, this sensation VANISHED! I was shocked because nothing has ever affected it before (anti-epileptics, benzo's, AD's, topical agents, pain killers.....nothing) Not even Zyprexia. In fact it has been the one constant in my life.
The sensation stayed away for around 6 months but then returned, this time as intense nerve PAIN at the EXACT same spot as the sensation had been. Raising the dose of Geodon to 60mg, made the pain go away but it returned some months later. This time increasing the dose of Geodon upto 160mg didn't make the pain go but didn't worsen it either. (so I went back on 60mg). I started gabapentin and that helped but each time my period came, the pain came back and I had to increase the dose of gabapentin. (there is supposed link between RGS and hormonal cycling and from personal experience I can confirm that) Finally I was upto 3600mg gabapentin but the pain stayed put. It only ever responded to 8mg of Clonazepam taken as an SOS strategy.
When I was coming off the Geodon, at 20mg the pain went away again and I was fine for a few months. Then I (stupidly) added the pill and the pain came back with a renewed vengeance. I then needed 20mg of clonazepam to get rid of the pain.
When I got off the Geodon, the pain went away rapidly only to be replaced by the original sensation. Plus all my BP symptoms.
Now, I have read in many places that AP's can make an existing movement disorder worse eg they aggravate RLS. So it could just be that, right?
But that doesn't explain why the sensation went away in the first place.
But much more importantly, what makes me very suspicious that this is TD is that while the sensation was/is there 24 hours, the pain only came at around 7pm in the evening. I was pain free in the day. I took my dose of Geodon at around 9pm. This makes me think that the Geodon was somehow masking the pain- when the blood level of Geodon fell and it was time for the next dose, the pain appeared. Isn't that masking typical of TD? Or could there be another explanation considering that the Geodon made the sensation go away in the first place?
Also I found a paper that links the 'sensation' to bipolar itself, wherein both patients (with both RGS and BP) responded to ECT. http://cat.inist.fr/?aModele=afficheN&cpsidt=18353597
Also in another paper (again with a bipolar woman) they link both BP and this restless genital syndrome- both they treat with ECT. But in this paper they go one step ahead and postulate that both BP and this sensation are due to abnormally high dopamine levels. Normalizing dA levels with ECT helped both things (they believe).I know that reducing dopamine in one of the brain DA pathways (as a result of APs) can lead to TD but have never heard of a AP helping with a movement disorder (like my sensation that vanished with Geodon).... In fact it makes them worse!
Also when I look at the binding actions of Geodon, apparently dopamine antagonism only happens above certain doses and I was on 40- 60mg only.
God, I am so confused and so are the doctors. As long as it is not related to TD I am happy to go back on the Geodon and have a nerve block or do whatever it takes to get rid of the pain. (which always comes with the Geodon- i have re- challenged myself at least twice)
Just to add my drug regime at the time was:
Lamictal 200mg (taken for 5 years)
Lexapro 10mg (for OCD, taken for years)
Geodon 60mg
Provigil 300mg (also taken for years)
Clonazepam 2mg (to sleep)If you have managed to read so far, I thank you sincerely!
If anyone has any comments on this I would be most grateful.Thank you so very much
Lots of Love
D
Posted by SLS on October 30, 2009, at 12:01:04
In reply to Medical mystery. Any experts? Scott? HELP!, posted by delna on October 30, 2009, at 7:31:52
I haven't figured it out yet, but I do want to ask the obvious question: Have you tried using a dopamine receptor agonist (Mirapex or Requip) to treat the "restless" pain syndrome?
Also: What about using Abilify as a replacement for the Geodon? It is unlikely to produce TD because it really doesn't affect striatal dopaminergic tracts.
- Scott
Posted by delna on October 30, 2009, at 12:21:42
In reply to Re: Medical mystery. Any experts? Scott? HELP! » delna, posted by SLS on October 30, 2009, at 12:01:04
Thanks so, so much for the reply, Scott!!
Yes I was on Mirapex for 8 months (for depression/anxiety) but it did nothing to the sensation.
> Also: What about using Abilify as a replacement for the Geodon? It is unlikely to produce TD because it really doesn't affect striatal dopaminergic tracts.
You know I would really like to try Abilify but I am so paranoid about the TD angle. I think to myself, what if this was just the beginning of TD and I was just lucky to have gotten off it in time. Also I am scared that my receptors have become 'hyper-sensitized" or have "up-regulated" (or whatever happens) and now I am really prone to TD on any AP. Knowing so little about all these mechanisms makes you more paranoid. so I am just scared and confused about the Abilify ........
Posted by Phillipa on October 30, 2009, at 12:43:57
In reply to Re: Medical mystery. Any experts? Scott? HELP! » SLS, posted by delna on October 30, 2009, at 12:21:42
Delna heard a similar story on the radio of all places but darned if I can remember what the answer was. How's the switch over going? Love Phillipa
Posted by delna on October 30, 2009, at 12:48:49
In reply to Re: Medical mystery. Any experts? Scott? HELP! » delna, posted by Phillipa on October 30, 2009, at 12:43:57
>How's the switch over going?
Thanks for asking Phillipa.
Actually it is quite bad. The Nortryptiline (sp?) is knocking me out and making me feel worse so I am not taking it anymore. I'm really just trying to 'hang in there' till this 12 day period is over. It's not fun :(
Thanks for your concern
Love D
Posted by manic666 on October 30, 2009, at 13:07:56
In reply to Medical mystery. Any experts? Scott? HELP!, posted by delna on October 30, 2009, at 7:31:52
i read your thread, And you are a cool brave lady,sorry you are in so much termoil at the moment. I hope you get some relief soon as it sounds a bad place your in .
Posted by bulldog2 on October 30, 2009, at 15:01:56
In reply to Medical mystery. Any experts? Scott? HELP!, posted by delna on October 30, 2009, at 7:31:52
> Hi all,
> Hope people are doing well on their regimes (or improving at least).
>
>
> **Hope the following doesn't embarrass anyone as it is quite personal and graphic (but medical)**
>
> Also it is VERY LONG and detailed but if you like the challenge of a medical mystery, you probably won't mind ;-) Plus I would be really grateful to you, if you did manage to read it. Thank you.
>
>
>
> Okay, I have a really bizarre case I want to put before all the expert babblers here. I'm pretty desperate so I would really appreciate your thoughts.
>
> The only medication that has EVER truly helped me in my 20 year battle with this illness (BP) has been Geodon. It changed my life- actually it allowed me live for the first time ever.
>
> Unfortunately, I had to give it up because I developed severe genital nerve pain on it.(which may be TD) To date, no one can explain what happened or how the pain came about but I am 200% sure it was Geodon. For one thing, when I stopped it , it went away rapidly.
>
> I desperately want to go back on Geodon and treat the pain aggressively (with nerve blocks etc) but I am afraid the pain MAY have a link with TD. If not, I will go back on it since I fear it is my only real hope.
>
> I have currently put this case before a neurologist, pain specialist and 2 pdocs. Plus I saw at least 15 docs (neuros/psychs/gynacs) while I was having the pain but no one had a clue what it was nor did anyone link it to TD. Not even my specialist US pdoc who prescribed Geodon in the first place and was fully aware of this pain.
>
> This is because what happened to me is undocumented and my particular case complicates the picture. It's only recently that I stumbled upon a 1994 paper in Neurology journal describing 1 or 2 cases of this.
>
> 'Oral and genital tardive pain syndromes.'
> Ford B, Greene P, Fahn S.
>
> http://www.ncbi.nlm.nih.gov/pubmed/7969969?ordinalpos=4&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
>
> Incidentally, I have bought the full paper (if anyone wants to see it) but the key point is that of those 11 patients, 2 had some sort of genital pain (not really similar to mine), but still. All 11 patients also had full fledged TD. However, the authors postulate that for certain reasons, they believe that 'genital pain syndrome' can exist as a separate entity (without other TD symptoms) and is, in fact a manifestation of TD caused by APs.
>
> Sounds straightforward right? Clearly it must have been TD..... BUT it is not so simple.
>
> Why?
> Because since childhood I have had a highly uncomfortable 'nerve sensation' in my genitals- in the exact same place the pain came. (gosh, this is embarrassing..) The sensation must have started when I was under 10yrs old (before I had ever touched a psych drug before) but I thought it must be normal and never spoke about it. I thought it was 'hyper-sexuality' for ages but because it is there 24hrs a day and is not associated with sexual thoughts, it is clearly not. Plus it is not the same as the hypersexulaity you get when you are hypomanic/manic (which I also have much experience with). This sensation is also there when I am depressed.
>
> I have been googling this forever and only recently came across 2 researchers who are studying this as a phenomenon in women.
> One doctor described it and it as EXACTLY what I have. He calls it "Restless Genital Syndrome" (RGS)
> 'http://www.restlessgenitalsyndrome.com/en/index.html
> Also known as PSAD (persistent sexual arousal syndrome) named so by the doctor who first documented it.
>
> In a nutshell this is a description of MY EXACT symptoms selectively taken from the "Restless Genital Syndrome" link.
>
> 'These women report weird sensations at the clitoris. The sensations consist of tingling and wave-like sensations, small shocks in or around the clitoris Women usually experience a close to orgasm sensation as if they are on the verge on getting an orgasm. Miraculously, while having these sensations, women do not long for or fantasize about sex. Unfortunately, masturbation or intercourse do not lead to a diminishment of the genital sensations. The sensations are usually present the whole day,
> Restless genital syndrome makes a woman often completely desperate." etc etc
>
> Very importantly, this research doctor is linking this with restless legs syndrome (a movement disorder)
>
> You may wonder why I am torturing you with this graphic info- there is a point I promise.
>
> When I started Geodon 40mg, within a few doses, this sensation VANISHED! I was shocked because nothing has ever affected it before (anti-epileptics, benzo's, AD's, topical agents, pain killers.....nothing) Not even Zyprexia. In fact it has been the one constant in my life.
>
> The sensation stayed away for around 6 months but then returned, this time as intense nerve PAIN at the EXACT same spot as the sensation had been. Raising the dose of Geodon to 60mg, made the pain go away but it returned some months later. This time increasing the dose of Geodon upto 160mg didn't make the pain go but didn't worsen it either. (so I went back on 60mg). I started gabapentin and that helped but each time my period came, the pain came back and I had to increase the dose of gabapentin. (there is supposed link between RGS and hormonal cycling and from personal experience I can confirm that) Finally I was upto 3600mg gabapentin but the pain stayed put. It only ever responded to 8mg of Clonazepam taken as an SOS strategy.
>
> When I was coming off the Geodon, at 20mg the pain went away again and I was fine for a few months. Then I (stupidly) added the pill and the pain came back with a renewed vengeance. I then needed 20mg of clonazepam to get rid of the pain.
>
> When I got off the Geodon, the pain went away rapidly only to be replaced by the original sensation. Plus all my BP symptoms.
>
> Now, I have read in many places that AP's can make an existing movement disorder worse eg they aggravate RLS. So it could just be that, right?
>
> But that doesn't explain why the sensation went away in the first place.
>
> But much more importantly, what makes me very suspicious that this is TD is that while the sensation was/is there 24 hours, the pain only came at around 7pm in the evening. I was pain free in the day. I took my dose of Geodon at around 9pm. This makes me think that the Geodon was somehow masking the pain- when the blood level of Geodon fell and it was time for the next dose, the pain appeared. Isn't that masking typical of TD? Or could there be another explanation considering that the Geodon made the sensation go away in the first place?
>
> Also I found a paper that links the 'sensation' to bipolar itself, wherein both patients (with both RGS and BP) responded to ECT. http://cat.inist.fr/?aModele=afficheN&cpsidt=18353597
> Also in another paper (again with a bipolar woman) they link both BP and this restless genital syndrome- both they treat with ECT. But in this paper they go one step ahead and postulate that both BP and this sensation are due to abnormally high dopamine levels. Normalizing dA levels with ECT helped both things (they believe).
>
> I know that reducing dopamine in one of the brain DA pathways (as a result of APs) can lead to TD but have never heard of a AP helping with a movement disorder (like my sensation that vanished with Geodon).... In fact it makes them worse!
>
> Also when I look at the binding actions of Geodon, apparently dopamine antagonism only happens above certain doses and I was on 40- 60mg only.
>
> God, I am so confused and so are the doctors. As long as it is not related to TD I am happy to go back on the Geodon and have a nerve block or do whatever it takes to get rid of the pain. (which always comes with the Geodon- i have re- challenged myself at least twice)
>
> Just to add my drug regime at the time was:
>
> Lamictal 200mg (taken for 5 years)
> Lexapro 10mg (for OCD, taken for years)
> Geodon 60mg
> Provigil 300mg (also taken for years)
> Clonazepam 2mg (to sleep)
>
> If you have managed to read so far, I thank you sincerely!
> If anyone has any comments on this I would be most grateful.
>
> Thank you so very much
> Lots of Love
> D
>I'm wondering if some type of vitamin/mineral disruption is involved. Take a blood test now for vitamin/mineral levels. Try the Geodon and retest if the syndrome appears. I know there are some that believe vitamin/mineral disruptions occur with fibromyalgia type syndromes.
Love'
Bulldog2
Posted by Phidippus on October 30, 2009, at 15:42:18
In reply to Medical mystery. Any experts? Scott? HELP!, posted by delna on October 30, 2009, at 7:31:52
You know what may help?
Mirapex. Its used to treat Parkinson's, TD and RLS.
P
Posted by delna on October 30, 2009, at 17:25:29
In reply to Re: Medical mystery. Any experts? Scott? HELP! » delna, posted by Phidippus on October 30, 2009, at 15:42:18
> You know what may help?
>
> Mirapex. Its used to treat Parkinson's, TD and RLS.
>
> PThanks for your reply and suggestion. i have taken Mirapex for nearly a year in the past. Not for the 'sensation' but for anxiety/depression. It didn't help at all (except for anxiety for some reason). But it did make my tremor better :)
Thanks again
take care
D
Posted by delna on October 30, 2009, at 17:43:19
In reply to Re: Medical mystery. Any experts? Scott? HELP! » delna, posted by bulldog2 on October 30, 2009, at 15:01:56
> I'm wondering if some type of vitamin/mineral disruption is involved. Take a blood test now for vitamin/mineral levels. Try the Geodon and retest if the syndrome appears. I know there are some that believe vitamin/mineral disruptions occur with fibromyalgia type syndromes.
Thanks for your reply.
Anything you can suggest? I feel I have to spoon feed my doctors. They really know very little.In India, I can just decide what tests to have and do them- I don't need a doctors reference. One of the few perks of living here.
Like one friend suggested i may have a problem with my red blood cells- not anemia but something about how the RBCs absorb stuff. This was for the tiredness. She was surprised I hadn't ever had it done considering how tired I always am- and the reasoning was really logical. For her it fully explained her fatigue because her results were abnormal. She took some special supplements and is 100% now. I did the test but mine came out normal.
So really you do tests because someone recommends it as it has helped them. No doctor has ever suggested any vit/min test for me apart from vitamin B12 which came out normal.
I would appreciate any suggestions you may have.
Thanks again
Love
D
Posted by jane d on October 30, 2009, at 18:25:32
In reply to Medical mystery. Any experts? Scott? HELP!, posted by delna on October 30, 2009, at 7:31:52
> I know that reducing dopamine in one of the brain DA pathways (as a result of APs) can lead to TD but have never heard of a AP helping with a movement disorder (like my sensation that vanished with Geodon).... In fact it makes them worse!
>
> Also when I look at the binding actions of Geodon, apparently dopamine antagonism only happens above certain doses and I was on 40- 60mg only.
Delna,
I have read of AP's temporarily masking TD symptoms. As I recall TD symptoms would appear the AP dose would be increased and they'd disappear for a while. Then they'd reoccur and the dose would get raised again causing them to temporarily disappear again. Disclaimer - it's been seven or eightyears since I've looked at anything to do with TD.I'd think that the studies showing Geodon only binding above a certain dose were done on a typical population but you already know that you are not typical. Certain groups (people with certain types of disorders) are also more likely to get TD.
I'm sorry if that sounds discouraging in what is already an awful situation. If you're satisfied with the credentials of the researchers you found, perhaps you can contact them directly. This sounds rare enough that they should be happy to find another sufferer.
Good luck,
Jane
Posted by bulldog2 on October 30, 2009, at 18:31:01
In reply to Re: Medical mystery. Any experts? Scott? HELP! » bulldog2, posted by delna on October 30, 2009, at 17:43:19
> > I'm wondering if some type of vitamin/mineral disruption is involved. Take a blood test now for vitamin/mineral levels. Try the Geodon and retest if the syndrome appears. I know there are some that believe vitamin/mineral disruptions occur with fibromyalgia type syndromes.
>
>
> Thanks for your reply.
> Anything you can suggest? I feel I have to spoon feed my doctors. They really know very little.
>
> In India, I can just decide what tests to have and do them- I don't need a doctors reference. One of the few perks of living here.
>
> Like one friend suggested i may have a problem with my red blood cells- not anemia but something about how the RBCs absorb stuff. This was for the tiredness. She was surprised I hadn't ever had it done considering how tired I always am- and the reasoning was really logical. For her it fully explained her fatigue because her results were abnormal. She took some special supplements and is 100% now. I did the test but mine came out normal.
>
> So really you do tests because someone recommends it as it has helped them. No doctor has ever suggested any vit/min test for me apart from vitamin B12 which came out normal.
> I would appreciate any suggestions you may have.
> Thanks again
> Love
> DPossibly see an internist or an endocrinologist to run tests to look for physical causes of fatigue.
Posted by delna on October 31, 2009, at 4:32:58
In reply to Re: TD and masking » delna, posted by jane d on October 30, 2009, at 18:25:32
> Delna,
> I have read of AP's temporarily masking TD symptoms. As I recall TD symptoms would appear the AP dose would be increased and they'd disappear for a while. Then they'd reoccur and the dose would get raised again causing them to temporarily disappear again. Disclaimer - it's been seven or eightyears since I've looked at anything to do with TD.
>Hi Jane,
Thanks for your reply!
I agree, it looks like TD based on the masking alone! BUT the fact that there was an existing bothersome sensation in the first place makes me think (hope) something else was going on. This sensation could definitely not be TD because it has been there since I was a child.The Geodon got rid of the sensation but eventually converted it to pain. The pain then behaved exactly like TD, no doubt.
In fact as you suggest, I have already written to the researcher, namely the one studying the 'sensation', he terms 'restless genital syndrome'. I was just requesting his latest papers/research and simply told him that I think I have RGS and age of onset etc. He replied in a heartbeat (at the weekend, to boot) He was fascinated by the fact that the age of onset was so young and was really eager for my case history. For research purposes obviously, it seems
When I spelled out the case, he just never replied.... although I wrote to him again to remind him.
I guess I didn't qualify as a good research subject.
Reason being (I think), he is pursing the link between restless legs, urinary urgency and restless genital syndrome and since I have neither of the other 2, I am of no interest as a subject.
Add to that the history of psychiatric illness and no one wants to know.
This is so common in every field of medicine- if you are a psych patient other doctors take what you say with a pinch of salt and put every symptom down to your psychiatric condition. That sucks!Also, by sheer coincidence my neurologist(the only helpful one, willing to look into this problem), met with the author of the main article about 'genital tardive syndrome'. This was a year ago at least when I was still on Geodon and was in pain. He mentioned my case and the author said to try tetrabenazine (which now I find out is a drug for TD!!).
Somehow, my neurologist failed to tell me this, at the time. He only told me now after I sent him the article and he had put the pieces together. Plus I am 100% sure he never mentioned the pre-existing sensation which I think changes the entire clinical picture.Because there are so many features involved like psych illness, drug action, possible movement disorder, hormonal influences, there is no one person whom I can consult.
I have written to my pdoc in NYC, who had prescribed the Geodon (he knew all about the pain but never thought of TD) and I am hoping he will shed some light. This is probably ABC for him. Well the TD part, anyway. Currently, he is my best bet.
Sorry for going on and on....
Thanks for your input.
take care
Love
D
Posted by delna on October 31, 2009, at 4:38:03
In reply to Re: Medical mystery. Any experts? Scott? HELP!, posted by manic666 on October 30, 2009, at 13:07:56
> i read your thread, And you are a cool brave lady,sorry you are in so much termoil at the moment. I hope you get some relief soon as it sounds a bad place your in .
Thank you very much for reading. And also for your kind and emphatic words. That meant a lot.
TC
Love
D
Posted by floatingbridge on November 1, 2009, at 11:14:48
In reply to Re: Medical mystery. Any experts? Scott? HELP! » delna, posted by Phidippus on October 30, 2009, at 15:42:18
Delna,
I read your post and want to wish you the best in your search. I wish I had info to add. I thought something like miraprex or abilify, but that's already been commented on.
fb
Posted by delna on November 2, 2009, at 4:39:15
In reply to Re: Medical mystery. Any experts? Scott? HELP! » Phidippus, posted by floatingbridge on November 1, 2009, at 11:14:48
> Delna,
>
> I read your post and want to wish you the best in your search. I wish I had info to add. I thought something like miraprex or abilify, but that's already been commented on.
>
> fbfb,
thanks for your best wishes...
Love
D
Posted by Donna Louise on November 5, 2009, at 7:54:48
In reply to Re: Medical mystery. Any experts? Scott? HELP! » floatingbridge, posted by delna on November 2, 2009, at 4:39:15
I saw on the Oprah show this condition. Too much pain for sex. Nothing to do with meds, they said it was a nerve problem that surgery will fix. I would think an up to date gyno would know. It is simple surgery and the problem is over and you can still take Geodon because there would be no cause and effect. Just the nerve thing. I wish I could remember more, you can probably google it, "nerve pain in vagina", or something like that.
Posted by floatingbridge on November 5, 2009, at 15:55:13
In reply to Re: Medical mystery. Any experts? Scott? HELP!, posted by Donna Louise on November 5, 2009, at 7:54:48
Or google the Oprah show. Donna Louise, do you remember the day the show aired? Oprah has quite an extensive site.
best wishes Delna,
fb
Posted by delna on November 5, 2009, at 16:30:42
In reply to Re: Medical mystery. Any experts? Scott? HELP! » Donna Louise, posted by floatingbridge on November 5, 2009, at 15:55:13
Hi guys,
Thanks you both for trying to figure this out but it's really not that thing Oprah was likely talking about. Its not about pain during sex or anything.
It's a sensation (like some sort of nerve tingling) that's there all the time. I've had it since early childhood It's a really rare condition, still in research stages.
This sensation was converted to pain by the Geodon.I am 100% sure of that. The pain also went as soon as Geodon was stopped and comes back rapidly, if I try to re-challenge myself with it.
Still waiting for my US pdoc's opinion on if it is TD related.
According to my neuro here (he read all the papers) he thinks it is TD related. But he said if I was so suicidal I should still try going back on it and getting a nerve block for the pain.Thanks again for your concern and help
Lots of love
D
Posted by Donna Louise on November 5, 2009, at 16:57:54
In reply to Re: Medical mystery. Any experts? Scott? HELP! » Donna Louise, posted by floatingbridge on November 5, 2009, at 15:55:13
> Or google the Oprah show. Donna Louise, do you remember the day the show aired? Oprah has quite an extensive site.
>
> best wishes Delna,
>
> fb
No idea, sorry. Sometime over the summer I think.dl
Posted by HyperFocus on November 9, 2009, at 22:16:49
In reply to Medical mystery. Any experts? Scott? HELP!, posted by delna on October 30, 2009, at 7:31:52
Have you tried sulpiride? It's another AP but like Geodon less EPS. Also affects prolactin so it affects women differently. Just a shot in the dark.
Posted by aminated on November 14, 2009, at 16:22:27
In reply to Re: Medical mystery. Any experts? Scott? HELP! » delna, posted by Phidippus on October 30, 2009, at 15:42:18
Just a thought....I take clozapine, an AP which is unique in that it doesn't cause any extrapyramidal symptoms (EPS), which are movement-disorder side effects and it also doesn't cause TD which as you know is a permanent case of EPS. The only problem is that you have to have your blood drawn weekly the first 6 mos., then every other week, etc. I just mention it because i tried several other APs, old- and new- generation, and always had severe EPS. Clozapine works well, no EPS, and I've been on it for about 8 mos. It might be worth trying if you need an AP.
Posted by delna on November 14, 2009, at 17:03:48
In reply to Re: Medical mystery. Any experts? Scott? HELP!, posted by aminated on November 14, 2009, at 16:22:27
> Just a thought....I take clozapine, an AP which is unique in that it doesn't cause any extrapyramidal symptoms (EPS), which are movement-disorder side effects and it also doesn't cause TD which as you know is a permanent case of EPS. The only problem is that you have to have your blood drawn weekly the first 6 mos., then every other week, etc. I just mention it because i tried several other APs, old- and new- generation, and always had severe EPS. Clozapine works well, no EPS, and I've been on it for about 8 mos. It might be worth trying if you need an AP.
Hi,
Thanks for the post.
I don't need an AP per say- I am not psychotic. I was given Geodon for it's extreme antidepressant quality and because it was really activating. I believe Abilify is similar. But Clozapine is sedating so I don't know how it would benefit me. :(
But thank you
Love D
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