Things we would like to be able to tell Dr. Komisaruk

[Daveman]

All applicants for our grant had to submit complete and detailed plans of their research program. This means that each of the programs had a solid direction and methodology. So it would be difficult, if not impossible that the Doctor would be in a position to change his plan, however, our input may be able to help him fine tune his procedure, or help him to find specific areas that will permit him to zoom in with better capability.

The Dr. is focusing on the vegal nerve, which has a very diverse influence, and can effect everything from spasms, and rhythms (the heart for instance) to digestion, orientation well, lots of things.

fMRIs can see changes in action, especially in the brain, so lets have a look at these subjects on internet, and see if there's anything that we can highlight that may shed deeper light on what's happening to us during the POIS process.

We'll make up a list and see what we can do about getting some of the information to him.

[FloppyBanana]

The question that immediately sprung to my mind when we were told the main avenue of research would be fMRI was: Can fMRI be useful in the detection of auto-immune responses and has it ever contributed to a "cure" (loose term) of an auto-immune disease.

I would like to ask: can we draw a line under and be clear about the Skin prick test person types and determine allergic/auto-immune type 1 and 4 responses ( as Walldinger theorised) through fMRI.

I would like to be sure that we catch POIS types who respond to deferent treatments in the fMRI test. The mains ones in my view are people who have a positive effect taking; Niacin, Testosterone, Progesterone, and persons who have been desensitised to semen.

I expect these are obvious questions but just wanted to be sure!
Thanks - FloppyB

[Nightingale]

The Dr. is focusing on the vegal nerve, which has a very diverse influence, and can effect everything from spasms, and rhythms (the heart for instance) to digestion, orientation well, lots of things

Wow, this is exactly what I was expecting. No joke!

I have had so many problems in my life that implicated the vagus nerve that I could not help but feel that it would have some connection to POIS.

First, a list, so that the connection between my health challenges and the nervous system are apparent, then a longer story to explain these after:

Current age: 27

• Major depression, treatment resistant for many years (now under control)
• Mania/psychosis, triggered after taking Provigil, and still something I need medication for
• Poor tolerance of the majority of psychiatric and neurologic meds I've taken (increased nervousness and anxiety, akathesia, dysphoria, depersonalization, or feeling strange weakness, and more, and more)
• Low, poor affect. Even when not feeling depressed, I seem to not display much emotion. I also fail to feel drives, like when I should be feeling angry I don't feel much
• Historically very sensitive to emotional distress, very fearful and upset as a child. Socially anxious as a teen and adult
• Infrequent bowel movements/long urine retention most of my life
• Digestive diseases - dysbiosis and possible new diagnosis of Small Intestine Bacterial Overgrowth, candida infection (suspected)
• Poor mobility at certain areas of my mouth/face, and speech problems that persist to adulthood - suggestive of herpesvirus impacting nerves in my face? Bell's palsy-like?
• Pectus excavatum/hypermobile joints/stria (stretch marks) - I understand connective tissue disorders can contribute to neuro disease like disautonomia. I can't help but wonder that if I had issues with my vagus nerve that my chest wouldn't grow right
• Bizarre sleep paralysis/would wake up startled with the feeling like I am passing away, yet I am unable to perform a typical "gasping reflex" to resolve the feeling of suffocating. Would happen after having alcohol or also antihistamines (benadryl) or relaxants
• Vascular issues - heart rate on the low end (nurses keep asking me if I'm an athlete, nope!) Reynaud's syndrome (poor circulation in my periphery), fluctuating blood pressure (more rare), often large difference between systolic and diastolic pressures. Fairly bad orthostatic hypotension when I was on SSRIs/SSNRIs
• Metabolic syndrome at age 24, despite only having been overweight for 1.5 years, but while on fairly high amounts of antipsychotics (I no longer have this condition after losing weight and reducing meds)
• Good response to B vitamin supplementation (with of course niacin)
• Certain textures (or even the thought of them) make me shiver down my spine

I personally have had what the doctors were only able to vaguely describe as a "vasovagal event" after taking the "wakefulness promoting agent" Provigil. I was also on the antidepressant Cymbalta which is known for its activating properties. I had one of the most bizarre and terrifying feeling of what seemed like hot liquid spilling, beginning from the base of my skull to throughout my body. It crept down my back, and spread to the center of my torso, where the vagus nerve begins. I was shaking, panicked, and sweating an unbelievable amount. I felt like my insides were being electrocuted. I thought I might die. I was in a psychiatric hospital at the time (luckily), so I had professionals observing me during this time. I paced back and forth until my legs gave out from under me. This was what the doctor latched onto when he thought I had a vasovagal event (essentially a type of fainting), but I never once lost consciousness. I unfortunately remember the entire torturing episode. It lasted about 15 minutes maybe.

One week later I had my first ever psychotic episode, and my journey to recovery took a turn for the worse. I was put on antipsychotics, but I was so extraordinarily sensitive to so many drugs I ended up staying at the hospital 3 months before they found the right drugs for me and felt comfortable letting me go.

I started my battle with depression the exact time POIS started. I was a nervous, shy kid with a slight speech impediment but a high acheiver. Once I hit 13, my life started to go downhill. I always wondered about vagus nerve stimulation, as I new it was being tried for treatment resistant depression, and I sure fit that category until I 1) I had Electro-Convulsive Therapy and 2) I stopped taking antidepressants and instead relied on lithium and 3) started taking clonazipam (Klonipn). I really can't function without it

Another reason I thought the vagus nerve is digestion. I have been fighting gut problems for close to three years now, and they often begin with faulty nervous function. Poor nervous system stimulation to the gut (vagus nerve participates in this from my memory) can lead to low "motility" in the gut, allowing excess bacteria and fungus an opportunity to take hold. I had some of my best times in the recent past when I was eating low to no sugar diets and after taking antifungals. I recently relapsed, and my gut hurts. I am in the process of finding out if I have a newer diagnosis, called Small Intestine Bacterial Overgrowth (SIBO). Just took a hydrogen breath test. Found out I am lactose intolerant (I didnt used to be) and I am waiting on my gastroenterologist's interpretation on SIBO.

Classes of meds and my reactions to them:

• Mood stabilzers - Extreme intolerance to Lamictal and Trileptal. Extreme dysphoria. Almost killed myself on Trileptal
• Antidepressants - Poor response. Treatment resistant. Unsettling dreams, and nervousness on SNRIs. In combination with Provigil, Cymbalta probably contributed to my development of schizo-affective disorder
• Benzodiazepines - Really can't function without them, I get too edgy. Respond excellently to Klonapin
• Sleep meds - Not effective. Did not help me sleep, Provigil made me have the terrible reaction I detailed above and led to psychosis/schizo-affective disorder
• Dopamine agonists - made me sleepy and at worst slightly catatonic. I also had irritability with Wellbutrin
• Beta blocker - made me lethargic and felt weak
• Muscle relaxants - dangerous. Would feel very weak
• IV general anesthetics - had too many fasciculations (spasms) with the first anesthetic they tried on me for my electro-convulsive therapy (propofol?), had to switch to etomidate (typically reserved for emergency situations or sick patients because it produces fewer adverse physiological effects)

I've taken so many medications, I'll probably remember more later and have to update this. I actually am hoping that a disordered vagus nerve or other disordered nerve is our problem, as treatments like nerve stimulation already exist! See http://en.wikipedia.org/wiki/Vagus_nerve_stimulation

A question: why is my second consecutive orgasm so intense and so much more debilitating? My sensation of pleasure goes through the roof, then it feels my brain falls to the floor!

EDIT 1/5/14 - added further description of Provigil event, added general anesthetic history, added more description to a few bullet points

EDIT 1/12/14 - added info about klonapin

[demografx]

The question that immediately sprung to my mind when we were told the main avenue of research would be fMRI was: Can fMRI be useful in the detection of auto-immune responses and has it ever contributed to a "cure" (loose term) of an auto-immune disease.

My question as well, FB! 

[Bulbo]

The Dr. is focusing on the vegal nerve, which has a very diverse influence, and can effect everything from spasms, and rhythms (the heart for instance) to digestion, orientation well, lots of things

Wow, this is exactly what I was expecting. No joke!

I have had so many problems in my life that implicated the vagus nerve that I could not help but feel that it would have some connection to POIS.

First, a list, so that the connection between my health challenges and the nervous system are apparent, then a longer story to explain these after:

Current age: 27

• Major depression, treatment resistant for many years (now under control)
• Mania/psychosis, triggered after taking Provigil, and still something I need medication for
• Poor tolerance of the majority of psychiatric and neurologic meds I've taken (increased nervousness and anxiety, akathesia, dysphoria, depersonalization, or feeling strange weakness, and more, and more)
• Low, poor affect. Even when not feeling depressed, I seem to not display much emotion. I also fail to feel drives, like when I should be feeling angry I don't feel much
• Historically very sensitive to emotional distress, very fearful and upset as a child. Socially anxious as a teen and adult
• Infrequent bowel movements/long urine retention most of my life
• Digestive diseases - dysbiosis and possible new diagnosis of Small Intestine Bacterial Overgrowth, candida infection (suspected)
• Poor mobility at certain areas of my mouth/face, and speech problems that persist to adulthood - suggestive of herpesvirus impacting nerves in my face? Bell's palsy-like?
• Pectus excavatum/hypermobile joints/stria (stretch marks) - I understand connective tissue disorders can contribute to neuro disease like disautonomia. I can't help but wonder that if I had issues with my vagus nerve that my chest wouldn't grow right
• Bizarre sleep paralysis/would wake up startled with the feeling like I am passing away, yet I am unable to perform a typical "gasping reflex" to resolve the feeling of suffocating. Would happen after having alcohol or also antihistamines (benadryl)
• Vascular issues - heart rate on the low end (nurses keep asking me if I'm an athlete, nope!) Reynaud's syndrome (poor circulation in my periphery), fluctuating blood pressure (more rare), often large difference between systolic and diastolic pressures. Fairly bad orthostatic hypotension when I was on SSRIs/SSNRIs
• Metabolic syndrome at age 24, despite only having been overweight for 1.5 years, but while on fairly high amounts of antipsychotics
• Good response to B vitamin supplementation (with of course niacin)
• Certain textures (or even the thought of them) make me shiver down my spine

I personally have had what the doctors were only able to vaguely describe as a "vasovagal event" after taking the "wakefulness promoting agent" Provigil. I was also on the antidepressant Cymbalta which is known for its activating properties. I had one of the most bizarre and terrifying feeling of what seemed like hot liquid spilling, beginning from the base of my skull to throughout my body. It crept down my back, and spread to the center of my torso, where the vagus nerve begins. I was shaking, panicked, and sweating an unbelievable amount. I thought I might die. I was in a psychiatric hospital at the time (luckily), so I had professionals observing me during this time. I paced back and forth until my legs gave out from under me. This was what the doctor latched onto when he thought I had a vasovagal event (essentially a type of fainting), but I never once lost consciousness. I unfortunately remember the entire torturing episode. It lasted about 15 minutes maybe.

One week later I had my first ever psychotic episode, and my journey to recovery took a turn for the worse. I was put on antipsychotics, but I was so extraordinarily sensitive to so many drugs I ended up staying at the hospital 3 months before they found the right drugs for me and felt comfortable letting me go.

I started my battle with depression the exact time POIS started. I was a nervous, shy kid with a slight speech impediment but a high acheiver. Once I hit 13, my life started to go downhill. I always wondered about vagus nerve stimulation, as I new it was being tried for treatment resistant depression, and I sure fit that category until I 1) I had Electro-Convulsive Therapy and 2) I stopped taking antidepressants and instead relied on lithium

Another reason I thought the vagus nerve is digestion. I have been fighting gut problems for close to three years now, and they often begin with faulty nervous function. Poor nervous system stimulation to the gut (vagus nerve participates in this from my memory) can lead to low "motility" in the gut, allowing excess bacteria and fungus an opportunity to take hold. I had some of my best times in the recent past when I was eating low to no sugar diets and after taking antifungals. I recently relapsed, and my gut hurts. I am in the process of finding out if I have a newer diagnosis, called Small Intestine Bacterial Overgrowth (SIBO). Just took a hydrogen breath test. Found out I am lactose intolerant (I didnt used to be) and I am waiting on my gastroenterologist's interpretation on SIBO.

Classes of meds and my reactions to them:

• Mood stabilzers - Extreme intolerance to Lamictal and Trileptal. Extreme dysphoria. Almost killed myself on Trileptal
• Antidepressants - Poor response. Treatment resistant. Unsettling dreams, and nervousness on SNRIs. In combination with Provigil, Cymbalta probably contributed to my development of schizo-affective disorder
• Sleep meds - Not effective. Did not help me sleep, Provigil made me have the terrible reaction I detailed above and led to psychosis/schizo-affective disorder
• Dopamine agonists - made me sleepy and at worst slightly catatonic. I also had irritability with Wellbutrin
• Beta blocker - made me lethargic and felt weak
• Muscle relaxants - dangerous. Would feel very weak

I've taken so many medications, I'll probably remember more later and have to update this. I actually am hoping that a disordered vagus nerve or other disordered nerve is our problem, as treatments like nerve stimulation already exist! See http://en.wikipedia.org/wiki/Vagus_nerve_stimulation

A question: why is my second consecutive orgasm so intense and so much more debilitating? My sensation of pleasure goes through the roof, then it feels my brain falls to the floor!

Hello nightingale
i want to know for how long have you been taking anti depressant treatment. Please help.Thanks

[Prancer]

Well said Nighting. This is a really great idea. I'll probably write a little more detail about my symptoms soon too for Dr. Komisaruk.

[Limejuice]

The Dr. is focusing on the vegal nerve, which has a very diverse influence, and can effect everything from spasms, and rhythms (the heart for instance) to digestion, orientation well, lots of things.

Just wondering how you know this information...  Are you able to see the plan or do you have access to information that we can't see?  If so could you share all this information with us?  Obviously we are interested in knowing more about the research as we're all sponsors it.

[Daveman]

The Dr. is focusing on the vegal nerve, which has a very diverse influence, and can effect everything from spasms, and rhythms (the heart for instance) to digestion, orientation well, lots of things.

Just wondering how you know this information...  Are you able to see the plan or do you have access to information that we can't see?  If so could you share all this information with us?  Obviously we are interested in knowing more about the research as we're all sponsors it.

We have been asking NORD to send more information, and the best they could do so far was to give the title of the plan, with promises to get us in touch with the researchers. The researchers have since contacted us, and are anxious to begin recruitment and have a good plan to inform and be informed about the whole POIS program.

This all will be unfolding very shortly. We just didn't want to say too much without more real and substancial information, to avoid questions like the one you are asking.

Sorry, we just have to be patient. We don't want to isolate you all from the process, and by the sounds of it, to our delight, the investigators are very prepared to clarify, and become informed.

[demografx]

Like Daveman, I think it is better to report complete information shortly...rather than give you bits and pieces which have not yet been fully connected. Dr. Komisaruk only signed the acceptance form this last week.

[demografx]

I'm thousands of miles away from Newark, but I'm considering volunteering myself.

Even with all the testosterone I'm taking (successfully), if that will help another POISer like me (some of us have different reactions, as Defsync points out), it might help!

[Defsync]

I'm 3,000+ miles away from Newark, but I'm considering volunteering myself.

Even with all the testosterone I'm taking (successfully), if that will help another POISer like me (some of us have different reactions, as Defsync points out), it might help!

Demo, if I go, you go. Team effort brohem. We need your brains, and my loudmouthed capacity for asking tough questions.

[demografx]

Thank you Defsync (Yes, SIR!!!!!!! - you're my Marine sergeant, right? )...but I'll decide for myself, thank you  

Just like everyone else  

[Defsync]

Thank you Defsync (Yes, SIR!!!!!!! - you're my Marine sergeant, right? )...but I'll decide for myself, thank you  

Just like everyone else  

Always the ambassador =)

[Prancer]

The symptoms of vasovagal response ("lightheadedness, nausea, the feeling of being extremely hot or cold (accompanied by sweating), ringing in the ears (tinnitus), an uncomfortable feeling in the heart, fuzzy thoughts, confusion, a slight inability to speak/form words (sometimes combined with mild stuttering), weakness and visual disturbances such as lights seeming too bright, fuzzy or tunnel vision, black cloud-like spots in vision, and a feeling of nervousness") that Defsync posted about earlier (before he removed it lol) are exactly the kind of symptoms I experience. When I first got POIS I clearly remember the black-cloud-like spots and the feeling of being very warm and nervous, lightheaded and tons of other symptoms mentioned for a vasovagal response.

Maybe they're onto something here. It'll be interesting to see what happens for sure.

[mellivora]

For many people here, POIS began at puberty. For me it was different. POIS began after I had radio-iodine treatment for an overactive thyroid which then effectively became underactive through being at least partly destroyed. Because of this, my case has the potential to inform. Thyroid problems don't seem to be common to all of us but, with the thyroid as a starting point, examining possible knock on effects might yield some clues  as to possible causes of POIS.

There are a select few people who seem to have been cured of POIS by addressing vitamin/mineral imbalances. This is something I have started to experiment with myself. The thyroid and the vagus nerve appear to have some influence over the digestive system and thus possible malabsorption of nutrients. I am in the early stages of looking into this so won't write anymore just now but it seems worth highlighting.

DAVEMAN - is it possible to make this thread more prominent on the site? If this is members' main way of communicating their thoughts to Dr Komisaruk at the moment I think it should be more obvious. I only found it from a link in one of your posts and could have easily missed its location. Is it possible to create a separate category for it. Perhaps create a: THINGS WE WOULD LIKE TO TELL POIS RESEARCHERS category and put the thread in there?

[Colm]

Two interesting new "scientific animal testing & research-based" articles that were linked to by new user (Thanks Zee80) on NSF Forum yesterday, about depression, the brain and microglia cells:

http://www.nature.com/mp/journal/vaop/ncurrent/full/mp2013155a.html

http://neurosciencenews.com/neuropsychology-mechanism-underlying-depression-712/

[Egordon]

I would like to be sure that we catch POIS types who respond to deferent treatments in the fMRI test. The mains ones in my view are people who have a positive effect taking; Niacin, Testosterone, Progesterone, and persons who have been desensitised to semen.

I think your questions are on point FB. I'm especially interested in whether any comparative analyses will be conducted between those who have undergone desensitization and those who have not. Such analyses might been seen as muddling already complicated data but could provide some insight into the promise (or lack thereof) of treatments that POISers have begun to undertake.

[Edit:] Although i'm located in California, I'd also be happy to volunteer depending on the cost and time commitment necessary.

[Daveman]

I would like to be sure that we catch POIS types who respond to deferent treatments in the fMRI test. The mains ones in my view are people who have a positive effect taking; Niacin, Testosterone, Progesterone, and persons who have been desensitised to semen.

I think your questions are on point FB. I'm especially interested in whether any comparative analyses will be conducted between those who have undergone desensitization and those who have not. Such analyses might been seen as muddling already complicated data but could provide some insight into the promise (or lack thereof) of treatments that POISers have begun to undertake.

[Edit:] Although i'm located in California, I'd also be happy to volunteer depending on the cost and time commitment necessary.

This could be a very valuable test, although what would be missing is some correlation to before and after.

[demografx]

I would like to be sure that we catch POIS types who respond to deferent treatments in the fMRI test. The mains ones in my view are people who have a positive effect taking; Niacin, [color= red]Testosterone[/color], Progesterone, and persons who have been desensitised to semen.

Damn! That's the 3rd suggestion that TRT'ers like me should be tested! 

Don't worry, I won't start a riot in Newark

[demografx]

For "questions we would like to ask..."

The research group at Rutgers University-Campus at Newark has just received a grant from the National Organization of Rare Diseases (NORD) to characterize the physical and cognitive symptoms of POIS and test for possible vagus nerve involvement. Upon making all the necessary preparations for the study (which will take approximately 2 months) we will post here a detailed description of the research procedures and a
consent form for your possible participation. In the meantime, if you have questions, please feel free to contact us.
Pooja Lakshmin, MD plakshmin@psychology.rutgers.edu
Barry R. Komisaruk, Ph.D. brk@psychology.rutgers.edu