Author Topic: Re: Applications for participation in Dr. K's POIS study  (Read 63502 times)

Stef

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Re: Applications for participation in Dr. K's POIS study
« Reply #60 on: October 01, 2014, 05:04:42 PM »


Just some very brief (but important) instructions re: paperwork for applying for Dr. K's study --

1) Print out the following questionnaires and fill out:
        #7A ("POIS Symptoms");
        #7B ("Your POIS History");
        #7C (2 pages, questions 1- 21 -- ***2 pages!);
        #7D ("SCL-90" -- only pages 2,3 and 4 -- 90 questions)


2) Re: #7D -- the "SCL-90" questionnaire -- only pages 2,3 & 4 are required. Please ignore the first (title) page -- it's a scoring sheet that won't be used.  Dr. K. is only interested in your responses re: pages 2,3 and 4 (90 questions);

3) Print out the two pages related to the Informed Consent -- Attachment #4 (demo posted these two pages out of order -- the first page is "Informed Consent" and the second page starts with, "Research Participants Initials____")

4) Read, initial and fill out info for second page of the Informed Consent.

So -- the application consists of a minimum of 9 pages -- plus any comments written onto separate pages that you might wish to include.



Thanks Stef, your summary of the list of required pages definitely helps!!

You're welcome, Mel!






Pianist

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Re: Applications for participation in Dr. K's POIS study
« Reply #61 on: October 04, 2014, 06:10:29 AM »
Dear friends! When will the study ???

Nightingale

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Re: Applications for participation in Dr. K's POIS study
« Reply #62 on: October 04, 2014, 10:40:11 AM »
I was researching vagal nerve simulators and realized something that hit me like a ton of bricks!

I have taken a plethora of psych drugs to help with the symptoms of POIS (30 or so) and the only ones that have ever helped fall in the anti-seizure category besides just being psych drugs. Depakote for 10yrs which is anti-seizure and mood stabilizer and now Oxcarbazipine which is similiar in some ways. I needed 2000mg of depakote toward the end and am going up on the Ox right now (1200mg- 1800mg). I find I tolerate these drugs very easily whereas most other psych drugs make me worse; and would probably benefit from the vagal nerve stim immensely. You guys may want to consider these drugs, not becasue your crazy but becasue they may stabilize you for the time being. They wk different than other psych drugs and help physical pain and symptoms the most I have ever experienced. More than exercise or any supplement I have taken. They also help make your OCD and mood more stable. Talk to docs first, of course.

A neurologist once diagnosed me with myoclonis, which is a peripheral nervous system seizure- in a sense. Of recent I have not had much, but palpitations are fairly constant, except after abstaining for 1wk or so. This symptom is distressing despite the docs I see saying I am young and have a healthy heart and it will eventually pass.     

I think these guys got something right with this study...

Anyone know when it will start?

Andy, you  will be interested to know I have the same experience. I have had the best results with meds that were initially designed for anti-seizure purposes. I currently take Lithium Carbonate as my mood stabilizer, and Clonazepam (klonipin) for "anxiety". I put anxiety in quotes, because I've found it's really not what one would think of as classic anxiety (stress generated by obsessive thoughts, fears, worries). It's more of a nervousness that is pervasive in my daily life which occurs no matter what the situation. If I forget to take the klonipin, I experience symptoms like jitters, rapid speech, and an "edginess". All things that are somewhat like precursors to seizures.

I have also had HORRIBLE reactions to certain anti-seizure meds, like Trileptal and Lamictal. Felt like I was going through medieval torture or something. The most important intolerance was when I took Provigil, a "wakefulness promoting agent" that can help people who feel tired a lot. Well, after 2 days on it, it caused me to have something like a seizure. I was luckily in a hospital at the time it happened, and had many people observe the situation. It felt like molten lava was slowly filling up my body, starting from the base of my head and spreading throughout my whole torso, arms and legs. I was panicking and sweating profusely. The doctors told me their best guess was that I had a "vasovagal event", which I found out is doctor speak for a panic-induced seizure. It took some time for it to subside, but about 5 days after I had my first episode of psychosis. I've had to take an anti-psychotic ever since.

I strongly suspect that we will find out something very relevant to us through Dr. K's studies, more than we even expect!
Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.

demografx

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Re: Applications for participation in Dr. K's POIS study
« Reply #63 on: October 05, 2014, 11:37:45 PM »
Very encouraging, Nightingale!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Andy451

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Re: Applications for participation in Dr. K's POIS study
« Reply #64 on: October 10, 2014, 12:46:58 PM »
When can we expect news on when this study may occur? Or at least hear about any info regarding what is happening... Are there enough candidates yet?

 I know these guys are doing wk but I have the patience of a chipmunk on amphetamines ;) I blame it on POIS but that one is all me! ;)

Thanks guys.
28 yo M- POIS for 16yrs (since age 12). Chronic POIS- always there

Tried desensitization for 1.5yrs & was unsuccessful (POIS worse at 1/1000)

 Exercising- (running/light weights/situps/yoga) Ice my perineum. Gluten-free. Supplements- limited success.Meds- Oxcarbazepine/Buspar (past-Depakote10yrs)

demografx

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Re: Applications for participation in Dr. K's POIS study
« Reply #65 on: October 10, 2014, 02:24:41 PM »
When can we expect news on when this study may occur? Or at least hear about any info regarding what is happening... Are there enough candidates yet?

 I know these guys are doing wk but I have the patience of a chipmunk on amphetamines ;) I blame it on POIS but that one is all me! ;)

Thanks guys.

Andy, perhaps u can ask Dr K (email ?) since you're the Very First Applicant!!??!!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Andy451

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Re: Applications for participation in Dr. K's POIS study
« Reply #66 on: October 10, 2014, 03:14:35 PM »
When can we expect news on when this study may occur? Or at least hear about any info regarding what is happening... Are there enough candidates yet?

 I know these guys are doing wk but I have the patience of a chipmunk on amphetamines ;) I blame it on POIS but that one is all me! ;)

Thanks guys.

Andy, perhaps u can ask Dr K (email ?) since you're the Very First Applicant!!??!!


I did email him about a wk ago and no reply...
28 yo M- POIS for 16yrs (since age 12). Chronic POIS- always there

Tried desensitization for 1.5yrs & was unsuccessful (POIS worse at 1/1000)

 Exercising- (running/light weights/situps/yoga) Ice my perineum. Gluten-free. Supplements- limited success.Meds- Oxcarbazepine/Buspar (past-Depakote10yrs)

demografx

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Re: Applications for participation in Dr. K's POIS study
« Reply #67 on: October 13, 2014, 08:51:25 PM »
When can we expect news on when this study may occur? Or at least hear about any info regarding what is happening... Are there enough candidates yet?

 I know these guys are doing wk but I have the patience of a chipmunk on amphetamines ;) I blame it on POIS but that one is all me! ;)

Thanks guys.

Andy, perhaps u can ask Dr K (email ?) since you're the Very First Applicant!!??!!


I did email him about a wk ago and no reply...

My guess is that he's bogged down in evaluating everyone's questionnaire responses.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Andy451

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Re: Applications for participation in Dr. K's POIS study
« Reply #68 on: October 13, 2014, 10:05:00 PM »
When can we expect news on when this study may occur? Or at least hear about any info regarding what is happening... Are there enough candidates yet?

 I know these guys are doing wk but I have the patience of a chipmunk on amphetamines ;) I blame it on POIS but that one is all me! ;)

Thanks guys.

Andy, perhaps u can ask Dr K (email ?) since you're the Very First Applicant!!??!!


I did email him about a wk ago and no reply...

My guess is that he's bogged down in evaluating everyone's questionnaire responses.

Probably... I'm just hopping they recieved my application too; because usually people send you back a notification that such has happened. Yet, I don't know how this wks cuz I have never done a study before.. I wkd on one once, but that was avian-ecology and there was only data from animals...
28 yo M- POIS for 16yrs (since age 12). Chronic POIS- always there

Tried desensitization for 1.5yrs & was unsuccessful (POIS worse at 1/1000)

 Exercising- (running/light weights/situps/yoga) Ice my perineum. Gluten-free. Supplements- limited success.Meds- Oxcarbazepine/Buspar (past-Depakote10yrs)

Stef

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Re: Applications for participation in Dr. K's POIS study
« Reply #69 on: October 13, 2014, 11:47:34 PM »
Hi, Andy -- and Everyone!

Andy, if you sent your application by Fed Ex, there should be a tracking number that let's you track (online) when/if your item was delivered.

I'm in agreement with Demo. Dr. K. is likely bogged down with evaluating the questionnaires (in addition to working on other research projects). I've got no "inside" information, but I do think he's received many applications...probably several more than 12. If any others here are considering applying, now would be the time. You could always back out if you change your mind!

We can't expect him or his team to keep us all advised every step of the way (although we want to be advised about everything!). Just remember that he can be trusted to do this research properly -- we're certain about that.

And he also knows that everyone is waiting with baited breath. He's definitely not dragging his heels on purpose.

One other thing that needs to be kept in mind (this is for everyone's knowledge) -- all research involving human subjects in the US is considered highly confidential. The laws protecting patients' privacy are taken very seriously. So, when/if any of you does get invited to participate, Dr. K. may ask you to not post publicly about it until he's tested the 12 participants.  If that happens, it won't be a surprise and would make sense. He wouldn't want one participant's experience to color another's. Don't think it strange if he asks you not to discuss specifics publicly, until he gives the go-ahead.

Stef


FloppyBanana

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Re: Applications for participation in Dr. K's POIS study
« Reply #70 on: October 14, 2014, 03:46:44 AM »
Hi Stef,
Thanks for the guidance.
FloppyB
30 years of POIS. Mytelase after O with Iceman breathing technique.

Andy451

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Re: Applications for participation in Dr. K's POIS study
« Reply #71 on: October 14, 2014, 12:59:29 PM »
Hi, Andy -- and Everyone!

Andy, if you sent your application by Fed Ex, there should be a tracking number that let's you track (online) when/if your item was delivered.

I'm in agreement with Demo. Dr. K. is likely bogged down with evaluating the questionnaires (in addition to working on other research projects). I've got no "inside" information, but I do think he's received many applications...probably several more than 12. If any others here are considering applying, now would be the time. You could always back out if you change your mind!

We can't expect him or his team to keep us all advised every step of the way (although we want to be advised about everything!). Just remember that he can be trusted to do this research properly -- we're certain about that.

And he also knows that everyone is waiting with baited breath. He's definitely not dragging his heels on purpose.

One other thing that needs to be kept in mind (this is for everyone's knowledge) -- all research involving human subjects in the US is considered highly confidential. The laws protecting patients' privacy are taken very seriously. So, when/if any of you does get invited to participate, Dr. K. may ask you to not post publicly about it until he's tested the 12 participants.  If that happens, it won't be a surprise and would make sense. He wouldn't want one participant's experience to color another's. Don't think it strange if he asks you not to discuss specifics publicly, until he gives the go-ahead.

Stef

Ok. Just wanted to know because there a lot of unknowns with POIS already and perhaps I was missing some info that you did know...  Thank you for the information though, it is helpful. :)
28 yo M- POIS for 16yrs (since age 12). Chronic POIS- always there

Tried desensitization for 1.5yrs & was unsuccessful (POIS worse at 1/1000)

 Exercising- (running/light weights/situps/yoga) Ice my perineum. Gluten-free. Supplements- limited success.Meds- Oxcarbazepine/Buspar (past-Depakote10yrs)

Nightingale

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Re: Applications for participation in Dr. K's POIS study
« Reply #72 on: October 14, 2014, 01:48:51 PM »
Andy, I also submitted my paperwork via FedEx. I havn't heard back, and I emailed the team asking if my info had gotten to them. No response yet, I think this is part of confidentiality or just time constraints.
Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.

Andy451

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Re: Applications for participation in Dr. K's POIS study
« Reply #73 on: October 14, 2014, 02:28:43 PM »
Andy, I also submitted my paperwork via FedEx. I havn't heard back, and I emailed the team asking if my info had gotten to them. No response yet, I think this is part of confidentiality or just time constraints.

Yea, I would guess that is part of it. I forgot to fed-ex it because I live in NJ and Rutgers Newark is 20miles from my home- so I just mailed direct since it's so close to me. In fact I  may go back to the school  at that very school for a BS in Psych... Ironic I guess... In the process of applying for the winter semester now.
28 yo M- POIS for 16yrs (since age 12). Chronic POIS- always there

Tried desensitization for 1.5yrs & was unsuccessful (POIS worse at 1/1000)

 Exercising- (running/light weights/situps/yoga) Ice my perineum. Gluten-free. Supplements- limited success.Meds- Oxcarbazepine/Buspar (past-Depakote10yrs)

Pianist

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Re: Applications for participation in Dr. K's POIS study
« Reply #74 on: October 31, 2014, 04:28:37 PM »
Tell me when to begin the study?

fidalgo

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Re: Applications for participation in Dr. K's POIS study
« Reply #75 on: November 10, 2014, 11:18:48 AM »
The doctor wants that all people with Pois fill the questionare or only thus taht will apply for the study???

Colm

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Re: Applications for participation in Dr. K's POIS study
« Reply #76 on: November 10, 2014, 01:36:36 PM »
Fidalgo,

I think Demo or Stef probably needs to answer that, for clarity.

Nightingale

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Re: Applications for participation in Dr. K's POIS study
« Reply #77 on: November 10, 2014, 06:28:18 PM »
Got an update from Stef on another thread, posting this here so it's known:

Quote from: Stef
Just to clarify for everyone, the study has officially started.  You all need to know this.

While it might seem like nothing is happening, Dr.  Komisaruk and his team are evaluating all the questionnaires that were received. Apparently, this is no small feat!  Those questionnaires are REVEALING -- and Dr. K. needs to be certain that he chooses the most appropriate study participants.
Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.

Stef

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Re: Applications for participation in Dr. K's POIS study
« Reply #78 on: November 10, 2014, 06:42:59 PM »
The doctor wants that all people with Pois fill the questionare or only thus taht will apply for the study???

Hi, Fidalgo,

I remember Dr. Komisaruk mentioning early on that he'd appreciate receiving questionnaires even from men who can't participate,  but would like to share their information.

I don't know if he still feels this way, but your answers can only help the study. So, my suggestion is -- if you'd like to answer the questionnaires -- feel free to do so, letting him know that you can't participate but want to share your information for the sake of the study.

I suggest printing the questionnaires, filling them out, scanning them and then sending them to him via email. His email address is : brk@psychology.rutgers.edu.

Stef


fidalgo

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Re: Applications for participation in Dr. K's POIS study
« Reply #79 on: November 11, 2014, 08:08:43 AM »
The doctor wants that all people with Pois fill the questionare or only thus taht will apply for the study???

Hi, Fidalgo,

I remember Dr. Komisaruk mentioning early on that he'd appreciate receiving questionnaires even from men who can't participate,  but would like to share their information.

I don't know if he still feels this way, but your answers can only help the study. So, my suggestion is -- if you'd like to answer the questionnaires -- feel free to do so, letting him know that you can't participate but want to share your information for the sake of the study.

I suggest printing the questionnaires, filling them out, scanning them and then sending them to him via email. His email address is : brk@psychology.rutgers.edu.

Stef

Thanks,

I will do that way.