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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 19 of 19. This is the beginning of the thread.
Posted by okydoky on November 2, 2008, at 10:52:25
Looking for some compassion or perhaps just venting! I tried the Parnate I ordered for two days. It killed my bladder. Luckily I did a bladder instill yesterday and it seems to have stopped these negative effects. Now I tried the last two ADs tath had ever worked for me , Amineptine and Parnate , both had not bothered my bladder in the past at least not significantly and both had worked at times. The Amineptine continues not to work and the Parnate well obviously I am not able to take. I am still holding out though. The Parnate I bought online was perhaps tainted. so if I find a doctor that will prescribe it and get the courage to try it again I have tried almost every class of medication and several in each class. Almost all do not work and most upset my bladder I thought Effexor had great potential from the few weeks I took it (until I no longer could tolerate its negative effects on my bladder) and tried Duloxitene after but it had no effect.
Okay I vented enough.Youve been kind and constant with me on this site. I appreciate it all,
oky
Posted by Phillipa on November 2, 2008, at 12:22:51
In reply to Sigismund + others, Thanks, posted by okydoky on November 2, 2008, at 10:52:25
Oky I'm sorry thought you were doing better sorry to hear you aren't. Phillipa
Posted by JadeKelly on November 2, 2008, at 12:39:11
In reply to Sigismund + others, Thanks, posted by okydoky on November 2, 2008, at 10:52:25
Hi Oky!
I'm new on this site, couple of days ago, but have been reading posts for a long time. Seems there's plenty of compassion to go around here, and everyone needs an ear now and then, heh?
I'm sorry about your current situation, it must be terribly frustrating. I know it is for me to get my hopes up-then nothing.
> Looking for some compassion or perhaps just venting! I tried the Parnate I ordered for two days. It killed my bladder. Luckily I did a bladder instill yesterday and it seems to have stopped these negative effects. Now I tried the last two ADs tath had ever worked for me , Amineptine and Parnate , both had not bothered my bladder in the past at least not significantly and both had worked at times. The Amineptine continues not to work and the Parnate well obviously I am not able to take. I am still holding out though. The Parnate I bought online was perhaps tainted. so if I find a doctor that will prescribe it and get the courage to try it again I have tried almost every class of medication and several in each class. Almost all do not work and most upset my bladder I thought Effexor had great potential from the few weeks I took it (until I no longer could tolerate its negative effects on my bladder) and tried Duloxitene after but it had no effect.
> Okay I vented enough.I, too, have had success on Parnate, and may have to stop it soon due to problems. Such a bummer! I wonder tho if it was the product-online. Can you talk to Doc about that? Would you consider Emsam? I had exact same response to Emsan as Parnate but patch seems safer. I responded to 1/2 6mg day. Yes, you can cut them in half!
Also, isn't there a new AD everybody's waiting for? Coming out soon? I'll try to find it and post back if I do.
Be well, and remember there's always hope for a better AD. Till then, take care,
Jade
>
> Youve been kind and constant with me on this site. I appreciate it all,
>
>
> oky
>
Posted by Sigismund on November 2, 2008, at 13:43:06
In reply to Sigismund + others, Thanks, posted by okydoky on November 2, 2008, at 10:52:25
Hello Oky
I wonder if the adverse effect on your bladder is mediated through the action of the ADs on a particular neurotransmitter?
You have been kind to me too.
Sig
Posted by bulldog2 on November 2, 2008, at 14:33:53
In reply to Sigismund + others, Thanks, posted by okydoky on November 2, 2008, at 10:52:25
> Looking for some compassion or perhaps just venting! I tried the Parnate I ordered for two days. It killed my bladder. Luckily I did a bladder instill yesterday and it seems to have stopped these negative effects. Now I tried the last two ADs tath had ever worked for me , Amineptine and Parnate , both had not bothered my bladder in the past at least not significantly and both had worked at times. The Amineptine continues not to work and the Parnate well obviously I am not able to take. I am still holding out though. The Parnate I bought online was perhaps tainted. so if I find a doctor that will prescribe it and get the courage to try it again I have tried almost every class of medication and several in each class. Almost all do not work and most upset my bladder I thought Effexor had great potential from the few weeks I took it (until I no longer could tolerate its negative effects on my bladder) and tried Duloxitene after but it had no effect.
> Okay I vented enough.
>
> Youve been kind and constant with me on this site. I appreciate it all,
>
>
> oky
>There might be a med to help with bladder problems. Scott had that problem with nardil and found a med that took care of that.
Posted by okydoky on November 2, 2008, at 15:38:41
In reply to Re: Sigismund + others, Thanks » okydoky, posted by Sigismund on November 2, 2008, at 13:43:06
>I wonder if the adverse effect on your bladder is mediated through the action of the ADs on a particular neurotransmitter?
A bit above my head. If it was through the action of a particular neurotransmitter would I see different results depending on the medication? Differnent medications work on different neurotransmitters right?
I have more or less reactions from different meds. I must say I never had any from Parnate. I am thinking it was not the real stuff. It had no markings on it at all.
oky
Posted by okydoky on November 2, 2008, at 15:41:01
In reply to Re: Sigismund + others, Thanks » okydoky, posted by JadeKelly on November 2, 2008, at 12:39:11
Jade,
Welocome and good luck.
I tried Selegiline. I think there was a problem with the online product.oky
Posted by okydoky on November 2, 2008, at 15:43:44
In reply to Re: Sigismund + others, Thanks, posted by bulldog2 on November 2, 2008, at 14:33:53
Thanks. I tried a couple in the past. One helped with Effexor but that was so long ago before my disease progressed.
oky
Posted by okydoky on November 2, 2008, at 15:44:32
In reply to Re: Sigismund + others, Thanks » okydoky, posted by Phillipa on November 2, 2008, at 12:22:51
Posted by okydoky on November 3, 2008, at 14:58:09
In reply to Re: Sigismund + others, Thanks » okydoky, posted by Sigismund on November 2, 2008, at 13:43:06
>
> I wonder if the adverse effect on your bladder is mediated through the action of the ADs on a particular neurotransmitter?I have wanted to try and figure out for a long time if I could predict whether a drug would have an adverse affect on my bladder before I took it based on my reactions to other drugs I had taken in the past. For example my old pdoc was surprised that I am able to take Ritalin as I am unable to take any of the other stimulants we tried or what else might bother me based upon Flexeril causing great distress
I wonder if perhaps I could investigate this further, with some help? I could try and remember many of the medications I have tried and if they had an adverse affect on my bladder. I could look up their mechanisms of action, such as specific neurotransmitter involvement and try to see if there is any pattern. (I might not be using the correct nomenclature here.) I was unable to get to Scott's chart: http://sl.schofield3.home.att.net/medicine/psychiatric_drugs_chart.html(this is old perhaps it is changed) as I thought it might be helpful.
What do you think? Is this too ambitious a project, even for someone who is well versed in how the medications work such as its action on a particular neurotransmitter?
There has to be some rhyme or reason to why one particular medication would bother me and not another. How it is metabolised would make a difference I believe. I am not sure at this point how much advantage it would provide to me as I have tried so many medications aleady. Being more informed certainly cannot do me harm and it might also help others who find themselves as I do.
Well just because I have a lot of extra time I cannot presume others do or would want to make use of it in this way ;^)
No matter, you are forever my friend,
oky
Posted by Phillipa on November 3, 2008, at 19:19:40
In reply to Re: Sigismund + others, Thanks » Sigismund, posted by okydoky on November 3, 2008, at 14:58:09
Oh wow why would SLS's drug chart not exist anymore it was updated. Phillipa
Posted by JadeKelly on November 3, 2008, at 21:16:43
In reply to Sigismund + others, Thanks, posted by okydoky on November 2, 2008, at 10:52:25
Oky,
You are much better educated in these areas than I am, but if you don't mind:
1. Do you have neurogenic bladder, or it just becomes a problem when taking certain meds?
2. I'm assuming you have seen a reputable urologist/gyn and had some imaging done?
3. Do you take anything that could act as a diuretic, or maybe check that as a s/e in future meds?
4. Possible that drugs that effect nerves in that area are culprit?
5. Would good urologist/Gyn know which drugs, or their properties, may be capable of causing your problem? Could he/she look at info page re: new meds befor you take them?
6. Is your estrogen level low, or is it possible that certain drugs lower it? I've seen that as s/e that a drug can lower estrogen, which in turn could cause bladder problems.
Just a little amateur brainstorming...hope you don't mind, and hope you get answers you're looking for!!!
Jade
Posted by okydoky on November 3, 2008, at 23:50:37
In reply to Re: Sigismund + others, Thanks » okydoky, posted by JadeKelly on November 3, 2008, at 21:16:43
> Just a little amateur brainstorming...hope you don't mind, and hope you get answers you're looking for!!!Of course I don't mind. It is kind of you to take an interest. I hope I am not boring you to death. Please if anyone is not interested in this subject do not read on.
>> Oky,
> You are much better educated in these areas than I am, but if you don't mind:
In my experience NO ONE is!!
> 1. Do you have neurogenic bladder, or it just becomes a problem when taking certain meds?
Neurogenic. Meds and foods cause increased symptoms called "flares"
> 2. I'm assuming you have seen a reputable urologist/gyn and had some imaging done?I have been to almost every Uro in Pittsburgh that treats* I.C.,had two biopsies and three bio distensions and a pain block. I saw a "specialist" at "The University of Pennsylvania"(Dr Phillip Hanno) , consulted with a leading research Dr ( Dr. Chancellor) in Pittsburgh that does research in all the related areas , who suggested my only hope was to move to a large city where I would have access to better providers at renowned institutions, two or three years ago I received botox injections into my bladder at the University of Miami as part of a research protocol. I dropped out after the first course as I was unfortunate in that I gained no relief from it. It is a very successful treatment. I travel 1hour 20min. to see a doctor now. Most uros just do not want to be bothered treating what is considered an "orphan" disease and find it difficult to handle this type of patient, needy I would say as compared to the usual take this or I'll take that out and see you in several months:-( (see the second link I provide)
*treatment generally means using one or two modalities and usually no pain relief. IF the docs pet treatment does not work for you too bad!!! He can make his money elsewhere without all the drama!!!
>
> 3. Do you take anything that could act as a diuretic, or maybe check that as a s/e in future meds?No.
>
> 4. Possible that drugs that effect nerves in that area are culprit?Anything is possible. I became ill during a three year stint with high dose perphenazine/cognetin and got better for several years when I stopped taking it. It came back full force. Perhaps some nerve damage had been done by the constant insult of the medication! At this future time I also had many infections which also could have caused nerve damage. There were many variables that could have contributed to the many theoretical etiological causes at this onset when I was diagnosed.
>
> 5. Would good urologist/Gyn know which drugs, or their properties, may be capable of causing your problem? Could he/she look at info page re: new meds before you take them?
No not at all. In fact it seems apparent that the disease "name" only suggests a cluster of symptoms so some people have no problem taking drugs I am unable to take.> 6. Is your estrogen level low, or is it possible that certain drugs lower it? I've seen that as s/e that a drug can lower estrogen, which in turn could cause bladder problems.
I have thought about this before. I was slightly low in estrogen several years ago and used a naturopathic cream. No one including an endocrinologist would listen to my thoughts on the subject. I do not believe it is the cause but a contributing factor. I have been so unfocused between the depression and the I.C., money worries and forgetfulness I had meant to follow this line of reasoning up with a naturopath, do saliva testing again.
If you are interested I find the following article informative and easy read about the disease itself and all it's possible etiologies including natural ways to treat them:
http://findarticles.com/p/articles/mi_m0ISW/is_2001_Feb/ai_70777335The following link is one I sent to my family several times they got on my back:
http://query.nytimes.com/gst/fullpage.html?res=990CE5D61F31F936A15752C0A963958260
Kind of you to show an interest. Sorry if I provided more information than you had in mind. I am sure this belongs on another site, actually another website altogether, there are two.
With gratitude hoping things are going well for you,
oky
Posted by okydoky on November 3, 2008, at 23:52:16
In reply to Re: Sigismund + others, Thanks » okydoky, posted by Phillipa on November 3, 2008, at 19:19:40
Posted by Phillipa on November 4, 2008, at 18:41:31
In reply to All well and good where is it? (nm) » Phillipa, posted by okydoky on November 3, 2008, at 23:52:16
Oky another link sure you have already read it but what the heck? Love Phillipa
http://www.urologychannel.com/interstitialcystitis/treatment-medical.shtml
Posted by okydoky on November 4, 2008, at 21:58:11
In reply to Re: All well and good where is it? » okydoky, posted by Phillipa on November 4, 2008, at 18:41:31
Thanks. Did not have that one but I have so many and receive emails from one in particulal I never even read most of them, but a very nice thought.
Take care,
oky
Posted by JadeKelly on November 8, 2008, at 22:55:57
In reply to Re: All well and good where is it? » Phillipa, posted by okydoky on November 4, 2008, at 21:58:11
Hi Oky,
I've been trying to get you on the board, I haven't figured out how to use babblemail...I receive them but can't get them out! I don't find info on board about it, I cant seem to find where to paste address as given. Maybe my computer is not compatible? Or maybe I'm an idiot when it comes to computers? either option entirely possible. In the mean time I'll see if I can get it working, but post if you can, I'll look for you. Maybe you can tell me how. Been thinking about you and hope you are feeling well. ~Jade
Posted by JadeKelly on November 8, 2008, at 22:59:55
In reply to Re: All well and good where is it? » okydoky, posted by JadeKelly on November 8, 2008, at 22:55:57
Posted by okydoky on November 9, 2008, at 22:08:59
In reply to Re: message was: read above post OKY DOKY (nm) » JadeKelly, posted by JadeKelly on November 8, 2008, at 22:59:55
This is the end of the thread.
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