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
poster:bulldog2
thread:923491
URL: http://www.dr-bob.org/babble/20091029/msgs/923530.html