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8 replies

excessive sweating/ over active nervous system after j pouch

V viking87Member
hello, I had my takedown surgery on my 18th birthday in 2005. Since then i have come to terms with the removal of my colon and have moved on with my life. The only problem is, one of the side effects of either the surgery, medication related to ulcerative colitis, or ptsd from the trauma... after years of personal research and with little help of doctors who don't really seem to be interested, or simply cannot help, i have self diagnosed the condition as one of two conditions; overactive sympathetic nervous system disorder or simply a non existing para-sympathetic nervous system.
symptoms:
-basically my fight or flight response is either activated way too quickly or simply has no breaking system
- extreme hyperhidrosis: any instance that my body feels the need to sweat, it pours an almost inconceivable amount of sweat from my entire body. ( awkward social setting, important event, warm, not even hot air temperature, moderate exercise, or even simply bringing in groceries
- i get incredibly anxious and worry about ridiculous things and dwell on them for hours
- i think people are mad at me or dislike me over simple comments at times
attempted treatments:
- been to a large variety of doctors with zero results; sports medicine,neurologist, g.i.,eastern medicine, neuro-psychologist, and maybe a few more
-breathing techniques have helped slow me down quite a bit but only once i get out of the situation and have time to relax
- read books on buddhism, taoism, etc to help keep me in a clam mental state
- took countless medications with reduced sweating or dryness as a side effect ( even scopolomine patches used for motion sickness, which i am pretty sure turned me into a zombie for about two weeks, apparently i went to work and just seemed a bit off, hung out with friends, etc, but have no idea what i even did those two weeks.)
- went to mayoclinic, and cleveland clinic for hyperhidrosis but chickened out at cleveland, and actually got pulled of the operating table right before surgery at mayo because my insurance wouldn't pay for the nerve block( loooking back on it i don't think that would of been a good idea
- took a over the counterish kind of substance called phenibut developed by the Russians to keep astronauts from going insane during long periods of isolation( completely relieved my of all symptoms for about two days, but apparently it has a very fast tolerance build up and after two days, well long story short, you go through a withdrawal period of about 4 days where, lets just say, things get extremely dark and you are easily spooked.)
- found a similar compound to phenibut that is less strong and the tolerance isn't as great in the muscle relaxer baclofen that helped a bit but not enough to put a dent in the issue.
- was put on medication for parkinsons's disease as well as a few other neuro related medications that didn't have such pleasant side effects either.
- recently a combination of vitamins i found with my own research have helped the most, but only for everyday, common, instances.( not for the life i want for myself.)including sublingual b-12 since my colonless body cant absorb the fat soluble derivative, magnesium, calcium, potassium, d3(sublingual), fish oil, co-q10, iron, and vitamin e.

I am at a dead end and if anyone on here can point me in some sort of direction, has experienced the same symptoms, or has any input at all, i would appreciate it. i have always took extremely good care of my body and still do today with diet and exercise. My grades suffered horribly from the sickness and surgery so i couldn't go to college, but i make a good living as a union roofer( not the best job for someone not tolerable to heat) as well as a fairly successful professional mixed martial arts fighter

please help me
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V viking87Member
Yes, I understand PTSD is a psychological disorder, I was a psych about it, we talked and talked, he gave me tapes on Buddhism. I learned breathing techniques and yoga, which helped the pschological symptoms quite a bit, but my body's physical reaction are simply too extreme. I am going to consult with a doctor about the suggested medication, and give it a try. I have a strong mind, so if the medication doesn't work, I will just stop taking it. I have also been looking into some unconvenienal treatments to the disorder such as MDMA theraphy and even the more extreme ahuawasca, which I would have to go to South America for most likely.
- thank you for your help
skn69skn69Member
Viking,
First off, I am so sorry that this is happening to you...second, you say that you are self diagnosised which means that there could be an underlying disease that you have missed or a group of symptoms that overlaps another disease.
I am thinking about 2 different possibities other than PTSD which can do serious damage to both your body and mind and send all of your symptoms for a loop.
Has anybody bothered to check your hormone levels?
I don't know if you are a guy or girl but suppose that you are a guy (sorry if I am wrong)...but this sounds awfully hormonal...It reminds me of severe PMS symptoms in girls. Excessive sweating, nervousness, heat sensitivity, emotional reactions...I am wondering if all of the surgery hasn't gone and pushed something way out of whack.
The other thought is a problem with your adrenal glands...also often triggered by severe trauma.
I don't know if this will help but it might give you a new direction to look in for help.
No matter what, keep us posted on your progress.
Sharon
V viking87Member
Yes, I have had my hormone levels, thyroid, and also had a 24 hour urine test done to check for traces of adreline. All came back negative. I'm thinking that is is either going to be due to trauma caused to the actual sympathetic nerve located right behind the colon, or the damage to the healthy bacteria in the gut that relp regulate the nervous system by breaking down essential vitamins and nutrients. Still unclear if this is related to the surgery, medication, the disease itself, or the psychological trauma attached to the whole experience.
- again thank you very much for your input, I appreciate it more than I could ever express
Jan DollarJan DollarModerator, RN, retired
Pretty much everything that crossed my mind has been suggested and/or tried. I do think you are on the right track of sympsthetic/parasympathetic system disruption. It can be triggered from a variety of sources and and disruption at any level within the reaction chain will set it in motion.

My husband suffered from episodic hyperhydrosis that started basically out of the blue. After some testing, the assumption was panic (anxiety) attacks. Who knows what the first triggering event was, but eventually it was anxiety about the sweating at inconvenient times (like court appearances). The solution? Xanax. He did not like the diagnosis because it was illogical. He had nothing to be anxious or worried about, and why would he wake up in the middle of the night with these episodes? The reality is that panic attacks take on a life of their own and happen without any real threat present, once the syndrome is in place. So, once he started taking a Xanax or half of one prior to any event he might worry about sweating, he was good. He recently retired and has not needed a Xanax since. He tried nortriptylene, but hated it because it made his mouth so dry he could not speak. Not good for a lawyer. This was not something he could wish away with meditation or positive thinking.

When you tested for adrenaline with a 24 hour urine, it could be that you just were not secreting at that time. If you have a pituitary or adrenal gland tumor, they can secrete intermittently, so it is important to run the test while you are symptomatic. I had a neuroganglioma that was presumed to be an adrenal tumor because I had a very rapid heart rate and slightly elevated 24hour urine catecholemines. I also had poor exercise tolerance and sweating. The neuroganglioma was just part of the story because I also had a heart conduction defect that decided to activate at the same time.

I was cured by cardiac ablation and an adrenalectomy. However, since my secreting tumor was not actually on the adrenal gland (just appeared to be on the CT scan), the neuroganglioma is still there. Low dose beta blocker (metoprolol) has kept the residual rapid heart rate in check and I don't sweat much anymore.

The point in telling you this? This stuff never has an easy answer or solution (as you are finding out). Just keep pressing for answers. Maybe recheck those catecholemines during an attack. If it is generalized anxiety, maybe occasional use of something like Xanax and/or regular use of an antidepressant that is useful for anxiety (like Paxil, Zoloft, Celexa or Effexor) will help.

I wish you luck, as I know how frustrating this is. The main thing to know is that you are not crazy. This is real!

Jan Smiler
V viking87Member
Thanks for your info, I had a vertical MRI done of my head to check for pituitary tumors, negative. This whole thing is getting so frustrated getting billed for basically using their resources when I am doing all of the research and footwork, they haven't suggested anything and simply say, they don't know and offer brilliant groundbreaking medical advice such as " have you tried wearing a hat with a headband under it to keep the sweat off of your eyes?" No doctor, I honestly not not considered that a sweatband making me look like someone in an and 1 commercial could of been the key all along. As you all know with colitis and crohns, the medical community is extremely annoying at times.
Jan DollarJan DollarModerator, RN, retired
Wear a hat? That's a good one! If this was not serious, it really would be funny.

While it may seem like it, medical professionals do care, and they hate being stumped almost as much as you. However, since they are not suffering with it, the motivation is not the same. Since this is not a life threatening thing, it gets pushed to the back burner. But, for the sufferer, it is extremely debilitating. Plus, for you, it could be dangerous, since you are more at risk for dehydration without your colon.

By the way, not all pituitary tumors are visible on imaging. Still, it does not mean you have one either. They are rare, especially with negative 24 hour urines.

Maybe treatment for chronic anxiety can get your out of the "loop," and get your body functioning more normally again.

Jan Smiler

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