ChgoGuy thread

[webslave]

Primary care docs are not worth bothering with, unless you know, walking into his office, what script you want. Here are some things you can try for sleeping: Elavil (amitriptyline), Vistaril (hydroxyzine), Kirkland Sleep Aid (Doxylamine succinate) -- all work or worked for me. Even melatonin can be helpful.

[ChgoGuy]

I know it's hard to remember what's going on with everybody, but I fear anything that causes any urinary retention like Elavil which I have taken. Vistaril would do the same although I can't even get these doctors to take any suggestion from me to try it- which I tried. Being a antihistamine, I'm going to guess the Doxylamine succinate will cause the same thing.I kind of liked the Elavil, but probably around the time I should titrate up, because the effects would wear down, the retention would begin. Considering I have the urge issues, the 2 didn't play well together with me.

I'm just so bothered that so many of you have experimented and found things to help, while with me, everything has had a negative impact. I would have loved for the Tamsulosin or Afluzosin to help, but for some reason both made me feel like I got hit with a ton of bricks, it gave me a depressive feeling everytime I had taken them (odd), and not only is the congestion really horrible with me, I felt like breathing was very labored. Which makes it worse is living in Chicago. There is something about living in Chicago, the weather and the airborne allergen's that causes havoc on people's breathing as it is. I don't think I know too many people if any that live here and don't struggle with bad sinuses or severe allergies. Generally I do okay, but then I could always rely on Pseudephedrine to help me out. So know that I can't rely on that, lets just say the Tamsulosin and Alfluzosin turn breathing, at least for me, into a nightmare.

I'm trying Vallerian Root to help. When it helps, it helps. I'm not sure why it does some nights but not during other nights. Melatonin for me is more of a mixed bag. I like the Vallerian Root better. Quite honestly the urge is what's really hampering my sleep. I feel agitated and anxious for no reason, and that generally tells me when I am going to get these urges. This is what I want to target with the doctors, but they will not listen to me.

[webslave]

Try Doxylamine succinate. It's OTC so no MD required. Very effective. If that causes symptoms, you may be out of luck on this issue.

Unless you are prepared to try a drug like Ambien...
https://en.wikipedia.org/wiki/Zolpidem

[ChgoGuy]

I have some Ambien still around since this all began. When it works it knocks me out for about 4 hrs, then I'm pretty much up the rest of the night. For the most part it's okay, but not a good idea for a work night. I'm always appreciative that you're trying your best to help though.

[webslave]

Use Ambien on weekends to catch up lost sleep.

[ChgoGuy]

Question: Will Vistaril cause urgency issues? I'm trying to get to the bottom of it since reviews say it causes theirs while others claim it tamed theirs. I hate mixed messages.

[webslave]

Genetic means we all react differently. Suck it and see, as it were.

[ChgoGuy]

Well I figured I would add something today. I am so frustrated by the fact that it has been virtually impossible for me to figure out anyway to relax. My body just isn't having it. For the record, I have been donating a lot of time unsuccessfully working on this. For anybody that hasn't read all my previous posts, I don't sleep - EVER! Not in 20 years! If I take a drug or a supplement like Melatonin or Valerian Root, it may put me down eventually for 2-4 hrs, but that may be it. Sure I will take whatever I can get, but it's value in very small.

When I practice breathing, especially incorporating the pelvic floor, 2 things stand out. Breathing normally, as opposed to breathing what became the norm for me, is very uncomfortable. I have been working on this for 3 yrs now, and my body is winning this battle. Sometimes when I am working on the breathing, especially when trying to relax or try to fall asleep, I may fall into a relaxed state or sleep for a very short period. Then I get startled out of this state - like a soldier who is awoken to gun shots or shelling, where I literally jump out of bed, or as I like to say, my entire body just hiccups. And when this happens my entire body tenses up, including my pelvic floor, and it can make urinating afterwards difficult.

I am extremely bothered by this, because I feel these episodes, along with no sleep, are a major influence when it comes to my pelvic pain. As I have said in the past also, sometimes my body at rest, feels like a gong after it has been struck. Other than stress that has been building up for years, there is no explanation why. Not one of my GP's, Urologists or Neurologists have an explanation why, even though I stress that I can't sleep or relax, and give them the reasons what is going on inside me. Do I have a form of PTSD? Well where did it all stem from? I can't point to anything specific. Could the stress in my life really overtaken me that much, that it is causing all these problems, pain with urinary issues? All I know is that I am doing everything in my power to stop this. Perhaps the only thing I have left is talking to somebody to figure out what's going on in my head. I'm trying to find the right person to help me, because it's not just about the anxiety or depression it is causing at times. The only reason why I am depressed by this, is because before the CPPS kicked in 3 yrs ago, I still was an able functioning human being that still was happy for the most part. I'm having a hard time finding somebody to talk to that handles the whole package - and not just the anxiety or depression aspect of it. BTW - it's these useless doctors who are the underlying cause of making me depressed. I walk in being positive, and it's their negative approach toward what I am going through - that f__ks with my head every single time.

I want to relax. I really do! The question is, what wrong or what amI doing wrong? Just 3 yrs ago before the shit hit the fan, I was okay for the most part. After having an okay but not so great day yesterday, it's all hurting today, especially my penis and perineum, and have no explanation why other than the stress of not sleeping - AGAIN!!!! Also what doesn't help, is my sinuses. It makes it difficult for me to breathe, and the only thing that ever helped, was Pseudophedrine, and thanks to my damned prostate, there is nothing left to fix this problem. I use a Neti pot, but it's only temporary. For some reason having my sinuses packed all the time, doesn't make breathing and relaxing easy for me.

Just venting!

[webslave]

CPPS is linked to a hypervigilance and that may explain the poor sleep link
viewtopic.php?f=37&t=7462

[ChgoGuy]

@Webslave

There are always questions..... So as usual I have another. Have you ever tried any of the other Quercetin w/ Bromelain supplements besides the Quercetin supplier's that you promote? If so, and I understand quality matters, what if any luck have you had with any other brands? I have never ordered Quercetin or any accredited quercetin product yet. The cost isn't a factor. I just tried options that were easier to obtain. And although I'm confident that it has helped, I wonder if I am missing out on something better. Since I am the kind of guy that ends up with CPPS, because I think too much and worry about BS that I shouldn't, now I am going to start overthinking whether I would be better off with either of the 2.

I wish I was in a different place and time in my life, or else I would be on a plane and head over to Stanford. People have told me to go to Mayo and find out exactly what I am dealing with, but Mayo isn't going to be able to fix me. I know I can fix this, but I have to figure out this whole relaxation part of it, and to stop giving a F__K. The not giving a F__K is going to be difficult, because I feel I will only hurt other people I care about by doing it.

[webslave]

Yes, I tried Twinlabs back 20 years ago and it worked reasonably well. But really, I recommend the Quercetin suppliers products, specifically Quercetin, because their products absolutely guarantee the stated ingredients (because it is used in clinical trials), whereas with all other brands it's a crapshoot. This was proved when a raft if so-called quercetin-containing products were tested back in the 1990s, only to find almost none of them contained the stated amounts.

[ChgoGuy]

As always, thank you Sir!

[Amonges]

Hey Chgoguy, just hanging in there. Taking one day at a time. How are things with you. I hope your feeling much better after doing the internal work, diet and relaxation. Any improvements ?

[ChgoGuy]

@Amonges - I didn't see any real drastic change sticking to a gluten free diet, laying off sugar and bad carbs related to flareups with pain & urge. On a positive note, I did however drop about 25 lbs since I started using the wand and modifying my diet over the past few months. So I gradually started introducing some stuff back into my diet, but significantly less than before. I stay away from sugar and sweets. I might cheat a little here and there, but nowhere near like it used to be. My blood pressure has been great, and my pre-diabetic sugar levels have seen a drop.

It seems like when using the wand, one of 2 things happen. I either don't find a trigger point, or I do find them and the next day I pay for it. I swear things run in cycles. I get chronic urge, which turns into perineum pain, which turns into penis and urethral pain, which then turns into pain between my bladder and prostate, which means less flow and less pissing, which then begins the cycle of chronic nighttime erections, which turns into better flow during urination - Start over again and repeat the cycle, with a few things thrown out of order sometimes. The perineum pain is more tolerable, and the pain in the urethra and penis doesn't stick around as much, but the urge continues to be problematic. It's either there driving me crazy, or it abruptly shuts down and goes away for a day or so. Stress and aggravation is usually the cause of the urge issues. I personally think I pee too much when I am peeing just fine with good flow, and yet I stay hydrated without going overboard. I've never been diabetic, but sometimes it's like somebody who has Diabetes Insipidus, without the thirst and the endless cycle of hydrating and peeing. But I drink water 99% of the time, and I swear whatever I drink, goes right through me. If It's hot and I'm working and sweating, no matter how much water I drink, I have no urge at all.

As of right now, I am not taking any Alpha Blockers, I laid off Myrbetriq again for OAB, and I am no worse off than when I was on anything. I take my Blood Pressure med, Quercetin, L- Theanine, and I recently started up on 10mg of Elavil again and may go up. My PC Doctor wanted me to go on Cymbalta, but I have Fatty Liver Disease and Cymbalta is known to affect the liver. I've taken it twice over the years and both times I had to stop because of high liver enzymes. I was given some Hydroxyzine to try, but I've read that for some people it causes retention and or more peeing - which I don't need. Things have been very complex for me since I came down with this, which will be 3 yrs in about 10 days. Next Sunday I will sit on a comfy couch and see if a psychologist can figure out how much of this I am causing myself with stress and aggravation. Relaxation is going to be the toughest thing to tackle, so that's why I'm finally going to talk to somebody to see if that will help. Other than that, I just finished up another 7 wks of PT, and hopefully the Insurance Company will grant me another 7 weeks (Yeah right!).

As you said, I too am taking things one day at a time. I really appreciate you asking how I am doing. If you have any other suggestions, I am all ears.

[Amonges]

Tell me about your step by step process on internal work ? When you hit those trigger points and start to feel the pain, are you relaxing and not tensing the rectum area or your legs? Are you breathing from belly instead of chest slowing in and out? How long are you holding the trigger points? Do you notice when u hold them for long period, is the pain subsiding? Are you pressing firmly with strength?? Sorry for questions, just want to make sure your doing it right so we can see improvement :)