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musicofnote 05-31-2013 06:52 AM

polyneuropathy vs Cymbalta vs Orgasm
 
Hello!

13 years after the first diagnosis of Ideopathic Polyneuropathy I decided to have a new set of tests done to see if they can't now find a cause and if so a possible reduction of symptoms, inasmuch as 13 years ago, they said there was nothing that could be done, also not to reduce the symptoms.

So all the blood work has come back in disgustingly normal ranges, and the only possiblilty they've not explored is a lumbar puncture - may not even be applicable in my case.

The new neurologist said that OF COURSE they can reduce the pain I've been having and prescribed 30 mg Cymbalta. this has moved the day-to-day spectrum of pain/discomfort more towards the "only mild discomfort" range with the worse days being only mildly painful. So it is a lot easier to cope with that. Better would be great, but I'll take what I can get.

Along with the Cymbalta I've had a whole range of side-effects, some completely gone, some only sporadically and some lingering on.

Dry-mouth is a stupid problem, but I can cope with a bottle of sparkling water nearby. Crushing periods of extreme tiredness are a problem, but these seem to be tapering off, or at least this week have been better. Sweating is also stupid, but I have a small towel in my backpack. Sleeplessness at night stopped, when I changed the time of day I take the stuff to breakfast instead of lunch.

But ... the one problem that is not going away and the reason I'm posting is ... lack of orgasms. Oh, I've never had a problem getting and holding an erection. both my wife and I are happy for that. But since I've been taking Cymbalta, nothing either she or I, with each other or alone, can do or have done has allowed me to get over that orgasm ledge. Now I suppose I -can-live with this, as I don't feel any really desperation on my part, I'm not ready to book a week at a neighborhood poof with the paramedics on call, but it is a little difficult for my wife who has always had some feelings of inferiority in sexual matters because of her upbringing and such. and now she has no pleasure from see her success with my outcome.

Soooooo ... any ideas of something that can possibly help us over this "hump" so to speak? Toys are not on with her, nor is prostrate massage.

mrsD 05-31-2013 10:32 AM

Cymbalta and other antidepressants in the "serotonin" affecting family have this effect.

Some posters on our PN board have found that Wellbutrin works on their PN pain well, and does not typically have this side effect.

It works on the dopamine system.

You might ask your doctor to switch you. There is really no trick to fixing this side effect that I have heard of yet.

Do you know if you had B12 measured? If so the numbers?
Lab ranges are very low for this test still and have been replaced by a new low of 400pg/ml. You might check out that "normal" and see if it is really "normal" ... it is very common to be quite low and doctors miss this result quite often.

musicofnote 06-01-2013 05:31 AM

Thanks for the reply! I've been on Cymbalta now for a bit more than 5 weeks and my next appointment is the end of July. Since I've had this PN for 13 years, the relief I've got now from the pain is dramatic for me. Even "mildly discomfortable" is amazing.

I don't have the test results myself, but my neurologist specifically mentioned the B12 as being normal because 'd specifically mentioned this when I first spoke to her before the tests were done.

I have no real problems with the no-orgasm thing for another few weeks - it's not like my libido has evaporated -quite the contrary- and as long as my wife is ok with this, there are a lot worse things I've been through.

But I will discuss this Wellbutrin with my neurologist and see what the downside of that might be.

mrsD 06-01-2013 06:47 AM

Get that B12 result! Doctors think 200pg/ml is "normal" and significant damage can result at this low level.

400pg/ml is the new "low" for normal but ranges don't reflect that.
In Japan it is even a higher!

If I have not given this new video to you yet, here it is:

http://www.youtube.com/watch?v=BvEiz...ature=youtu.be

This is my B12 informational thread which goes into detail about how to treat this orally, successfully, and explains testing.

Use the methyl version, as cyano is not active in the body and people can have genetic errors preventing activation of the synthetic cyano form.
http://neurotalk.psychcentral.com/thread85103.html

Dr. Smith 06-01-2013 02:13 PM

Quote:

Originally Posted by musicofnote (Post 988383)
I will discuss this Wellbutrin with my neurologist and see what the downside of that might be.

If I may suggest, do some research on it yourself beforehand, so you'll be able to discuss it from a more informed perspective. A couple of starting points might be cymbalta vs wellbutrin and cymbalta vs wellbutrin side effects. ;)

Doc

KathyUK 06-03-2013 04:12 AM

On the RSD board I posted about my experience of the same issue. Noone warns you of how bad Cymbalta can be as it's the docs' new fad in pain relief. To me the lack of orgasm was a total dealbreaker as were the sleep problems. The other thing they don't tell you is how horrible it can be to come off Cymbalta. At your stage you have been on it only a little longer than I was and at half my dose so it may not be a problem. Be prepared though and google for more info. xx

musicofnote 02-07-2014 05:01 AM

Update
 
It's been a couple of months and ....

.... further neuro-testing showed advanced carpal tunnel and extensive NP in my hands

BUT

no symptoms of either in the hands. I'll take that.

After putting up with as far as I was concerned very disturbing side effects of Cymbalta, my neurologist kept me at 30mg of Cymbalta, but added Gabapentine. Slowly most of the symptoms of Cymbalta faded away and with great patience, endurance, perseverance I was able to achieve pretty much 1 orgasm per month. Sex was still fine, just most times no end-game.

My neurologist sent me to the local hospital where one of the 3 head doctors is a neurologist who ran all the tests again, including blood work AND ordered a lumbar puncture. THAT was fun. 3 doctors needed 9 attempts and moving one vertebrae up from the normal place to get the juice - lab reports (as usual) nothing out of the ordinary. I was taking 3 x 300mg of Gabapentine, so he said, take it up as high as you want or until you start getting side effects. I took it up to 3 x 400mg and then went back to my normal neurologist.

She told me, that despite all the testing there is no findable cause, so it stays with idiopathic polyneuropathy. She said I should take Gabapentine up to 3 x 500mg and get back to her.

After 2 further weeks, no change - good days (infrequent) almost no symptoms in the feet and energy levels good. Bad days barely tolerable. Really bad days - let me unscrew my feet, leave them here and pick them up tomorrow.

So, now I've quite Cymbalta altogether - no side effects from quitting. and started Efexor ER, first week 1 x 37.5mg and starting next week 1 x 75mg. Plus my Gabapentine. No appreciable change yet, except it's now somewhere between tolerable and good.

musicofnote 02-28-2014 07:08 AM

further mini update
 
Spoke too soon about the change from Cymbalta to Efexor. Mild perception disturbances which were not fun while driving. A lot of sweating.

It has been getting better, but the feet themselves are only tolerable to good. So we're raising Efexor to 112.5 mg and Gabapentine to 3x 600mg.

Today I had the old problem of a sore spot on a toe that felt as if I had an infected blister. But nothing there. No sore, no redness, nothing. The flip side of that coin is, usually I feel no disturbance until a blister is there and infected. Neither is fun.

Question: what else is there comparable in effect to cymbalta or efexor?

mrsD 02-28-2014 08:02 AM

Effexor and Cymbalta are very similar in actions. They are pretty much interchangeable. Norepi and serotonin reuptake.

If you want a NEW type of intervention, Wellbutrin is the way to go.

There are several studies like this one on PubMed:
http://www.ncbi.nlm.nih.gov/pubmed/11706096

You can print this out and give to your doctor. This drug works for some people with neuropathic pain.

Changing you to Effexor is not a change of anything.
Of all the antidepressants out there, Wellbutrin has the lowest impact on sexual functioning.

musicofnote 03-28-2014 02:49 PM

Going to see my neurologist on Tuesday. Has anyone had any experience with cabergoline to restore orgasms?

http://www.health.harvard.edu/blog/a...n-201205294804

Dr. Smith 04-02-2014 12:44 AM

Interesting article...

Quote:

The study grew out of a basic observation, said lead researcher Dr. Tung-Chin Hsieh. When men have an orgasm and ejaculate, the amount of the hormone prolactin in the bloodstream surges. Cabergoline lowers prolactin levels, .... Hsieh and his colleagues in the Baylor College men’s health clinic started to prescribe cabergoline “off label” to see if reducing prolactin levels in men might cure anorgasmia.
...but I'm not following this. If prolactin surges during orgasm, why would lowering it help men achieve orgasm?

Doc

JVerive 04-24-2014 02:22 PM

Quote:

Originally Posted by Dr. Smith (Post 1060838)
Interesting article...



...but I'm not following this. If prolactin surges during orgasm, why would lowering it help men achieve orgasm?

Doc

Prolactin appears to be responsible for the refractory period following orgasm, so it is perhaps linked to the ability to achieve initial orgasm. The idea is that if high prolactin levels reduce the ability to reach orgasm, low levels might increase this ability.

musicofnote 04-28-2014 04:13 PM

Quote:

Originally Posted by JVerive (Post 1065623)
Prolactin appears to be responsible for the refractory period following orgasm, so it is perhaps linked to the ability to achieve initial orgasm. The idea is that if high prolactin levels reduce the ability to reach orgasm, low levels might increase this ability.

Still no orgasm - none since January. Urologist appointment in May.

musicofnote 05-11-2014 10:26 AM

Went to see the Urologist. He has no experience with cabergoline and wanted to do a couple of tests first, like testosterone level and such. And then he said he'll give me a tube for a semen sample and we both laughed at the same time and both said "But that's why I'm here!". Well, ok, pre-***. Proving more difficult than supposed. But he did say, that baring any other medical causes, which he doesn't think will show up, he'd "accompany" me wit this drug. I think, when he says it that way, he might even be thinking published case study....which frankly I doesn't bother me. If it could help me and through that help others, why the hell not. There are days when I can hardly sit still and sometimes it's gone back to like when I was 20 in college in a classroom filled with gorgeous young things and I don't dare stand up.... (grin)

Dr. Smith 05-11-2014 01:41 PM

When doctors have to prescribe medication #2 to counter side effects from medication #1, I figure there's something wrong with medication #1 to begin with. What if medication #2 has side effects—medication #3? Where does it end? But I digress... :rolleyes:

What happened with switching to Wellbutrin?

Doc

musicofnote 05-23-2014 04:47 AM

Quote:

Originally Posted by Dr. Smith (Post 1068787)
When doctors have to prescribe medication #2 to counter side effects from medication #1, I figure there's something wrong with medication #1 to begin with. What if medication #2 has side effects—medication #3? Where does it end? But I digress... :rolleyes:

What happened with switching to Wellbutrin?

Doc

Wellbutrin seems to be as unknown here in Switzerland as cabergoline. Anyone have any experience with medical marijuana?

mrsD 05-23-2014 07:16 AM

Wellbutrin (bupropion) is in Switzerland:

http://www.drugs.com/international/bupropion.html

It may only be sold now as generic bupropion

It is a very common drug, internationally. (it would be used instead of Cymbalta for your purposes)

Dr. Smith 05-23-2014 11:53 PM

Quote:

Originally Posted by musicofnote (Post 1071146)
Anyone have any experience with medical marijuana?

AFAIK, cannabis has been associated with causing anorgasmia.

medical cannabis anorgasmia

Doc

RickyBobby 07-02-2014 10:21 AM

What is your free Testoserone #'s on your blood work look like?


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