sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
This is a super embarrassing question/problem. I don't know what to do or who to talk to. I really don't want to talk with anyone about it. Hoping that some of you might be able to help me out, maybe you have some experience to share?
Over the past couple weeks I've had 2 incontinence episodes in my sleep. Both times it happened I was sound asleep and dreaming that I had to go pee... next thing I know I felt fire hot and wet! What a shockingly horrible way to wake up!!!
It's not nice to be woken up soaking wet like that. Another weird thing is that the urine is so dilute that it doesn't hardly smell and is almost completely clear. Normally it is more yellow for me. This may not mean anything but I thought it was strange since I was so sleepy and in shock and I still noticed it.
I'm careful not to drink much at night so I shouldn't be over-hydrating myself.
Both times it happened around 4am. It makes me almost scared to go to sleep!
Has this ever happened to anyone? What should I do? I don't know what to do about this! I'm too embarrassed to tell anyone. I really can't believe that I'm posting it here.
Obviously I trust you all and hope that you can help me. You can laugh first, that's OK But I still need help too.
Posts: 5237 | From here | Registered: Nov 2007
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Lyme creates a lot of bladder problems. This is one of them.
Posts: 2888 | From USA | Registered: Mar 2004
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
sammy, I am sorry you are dealing with this. I agree it is likely a Lyme thing.
"2 things have helped me avoid peeing at night. Adding additional salt to my evening meal and licorice root tea. I think for me the problem stemmed from innapropriate aldosterone secretion from the adrenal glands."
I hope you can find something to help soon.
Posts: 4681 | Registered: Oct 2000
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posted
Is there any possibility that you could be having seizures?
Hubby has had loss of bowel and bladder control a few times (usually in the hospital) when he was having his seizure-like spells that the docs swear are not seizures -- but the only way to control them is seizure meds.
He actually wet himself this past weekend during one episode when I could not talk the nurses into giving him some IV phenergan to stop his spell. This was after he had been shaking and having muscle spasms for a couple of hours (it was not visiting hours and they wouldn't let me into his room). For some crazy reason right now it takes a combo of IV phenergan and IV ativan given at the same time to stop his spells.
Actually they just put him on depakote which seems to be working -- no spells in 24 hours. But we are continuing the IV ativan and IV phenergan every 5 or 6 hours while he is awake for at least another week or two until his body adjusts to the new med.
If this is happening frequently you might try taking a benadryl before bed. It is one of the mildest anticholinergic drugs and should help.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
My cousin has trouble when she is over-medicated at night. Could that be a possibility?
---in other words, your brain is overwhelmed and you can't wake up when the message is sent to the brain that you need to get up
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ditto to a couple posts above.
Some Rx can make this worse, some herbs, too (like valerian). Mostly anything that relaxes muscles or induces sleep. If you take sleep drugs, you may want to revisit that.
I had this happen years ago - before lyme & co. were diagnosed and the docs told me I was just depressed and had me taking all kinds of antidepressants that really knocked me out, even at very low doses.
I only took one at at time but had to try various ones to try to find what wouldn't clobber me. None worked and my bladder behaved much better without any Rx for sleep.
Now, I also started having seizures so it's hard to know what came in which order.
MAGNESIUM SHOULD HELP if seizures and it relaxes enough to help sleep without paralyzing.
It can get better but do sleep with protection for a while.
Often I would not wake up in time but sometimes, just in the nick of time - or so I thought it might be.
Be VERY, VERY Careful to have non-skid footwear and no rugs in the bathroom that can trip you.
I really hurt myself many times, trying to run to the bathroom but once my bladder failed and I went slipping on the wet floor in bare feet -
with the bridge of my nose landing on a towel rack, all bloody and wet then. I hit it so hard I think I was knocked out for a while. Not a good early morning.
Another time, I broke a toe, trying to slip into some clogs for foot support as my feet were just so sore barefooted and, by then, I knew I needed traction.
I fell very hard and barely missed my mirrored closet door. So, think of your path and make it as safe as possible.
I learned to put a large plastic bag and towel in bed with me - and keep another nearby. Don't rush unless you know your feet can keep you upright. Just let it be.
Really, this can get better. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Find a doctor or PT trained in UPLEDGER TECHNIQUE for cranial sacral therapy. As others say, the lower vertebrae could be involved if there's pressure there. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Sammy, these are all good suggestions. I do worry the most about it possibly being caused by nerve damage from the vertebral fractures. I would call your surgeon about this pronto, so that possibility can be checked out (esp since it takes a while to get appts & tests set up anyway).
But Bea's suggestion of trying Benedryl for an anticholinergic med would be an easy thing to try to see if it stops it. Of course, you can't be sure that it will or won't happen again no matter what you do, but since it happened twice . . .
I've had a bad problem for ages with stress incontinence, which is a different cause, but any med that increases sympathetic tone does help it, such as a tricyclic antidepressant. I already have overly activated parasympathetic tone, due to Lyme.
The fact that it sounds like it's more than a little pee leads me to think of something like nerve damage, or seizure, or something unusual. But yes, inappropriate ADH secretion can do it---possibly caused again by the vertebral fractures? Please call your surgeon ASAP! If this is a cause, time is of the essence. Of course, I hope that it isn't.
Bea's idea of possibly a seizure of sorts in another one. In that case, you'd have to see a neurologist to check it out. The endless problems from the fall out of TBI's is just that it seems, endless!
Keep us updated---I do worry about you!
xoxo
Posts: 3771 | From around | Registered: Mar 2008
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
I've had this happen to me too, pre-Lyme days. I was in my late teens and was too tired to go to the bathroom before bed. I figured I could hold it till the next morning.
I had a dream that I was hovering over the toilet and about to release. Low and behold I was awaken to something warm and wet. My first thought was, could this be? Sure enough and filled with embarrassment.
That dream was so real.
I had the need to constantly pee when I first started treatment as well. At times I would feel like going, but it ends up being just a trickle. This part is all of Lyme and reported by others as well.
Posts: 2087 | From NY | Registered: Oct 2011
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Thank you friends. I'm still embarrassed but you made me feel better. You've given me many things to thing about.
I only take Lunesta and my pain medicine at night so I shouldn't be over medicated. I take one percocet pill 3-4x per day. That's not very much for the amount of pain that I'm dealing with from all the vertebral fractures. It barely helps. I even have difficulty sleeping most of the time because of the pain. I usually wake up easily to any noises in the house, to my alarm clock, cell phone, and even any sounds my cat makes.
Bea, I did kinda wonder if the episode was some type of seizure because for a few moments I realized what was going on and I couldn't move. I wanted to jump out of bed and run to the bathroom but I couldn't. As soon as I could move, I ran, but by then I was drenched. I don't know where it all came from.
I got paranoid and bought a plastic mattress cover today so that my bed will never get wet again. Only I will get soaked. I'm washable. I will also be careful to make sure that my path is clear because I don't need a fall or another fracture!
Recent imaging studies have only been done on the thoracic spine, I've broken T3-12. As far as I know the bladder nerves run through the sacrum so I don't think that I can blame this on the spine. Though it is a little coincidental.
I actually started physical therapy about 3 weeks ago. Right now I'm not able to do many exercises. So the therapy is focused on gentle manipulation/massage type work, TENs, and some strengthening. If I do too much PT I get horrible migraines and am too sick to do anything the next day. One doctor encourages me to keep trying (the one prescribing the pain medicine) and 2 doctors have told me to stop it until after I have the spine stimulator surgery. So I'm trying my best.
I do have an appt with a neurologist at a large university hospital nearby here in Oct. He will not be Lyme literate at all but I hope that he will be understanding and empathetic at least. I was originally referred for migraines and neuropathy but I guess I will have to tell him about this if I keep having problems. I wish I lived closer to my LLMD and other Lyme literate doctors.
I will have to read about and look into getting some licorice maybe it will help. I ate some salt and will take some benadryl before I go to bed tonight. Hopefully I'll be OK.
Hopefully this will just get better with treatment and I'll never have another episode again. I wish all of my symptoms would go away!
Thank you all again so much. I'll be back tomorrow to re-read your posts.
Posts: 5237 | From here | Registered: Nov 2007
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Sammy - I don't know.
This happened to me once years ago pre-Lyme days. I dreamed I was in the bathroom - but I wasn't. I had wet the bed. I worried about it happening again - but it never did.
That was during boyfriend days - and that was my only worry. Having an accident when sharing a bed. Now it would only be my very smart sleeping partner of a border collie that would just look at me like "what did you just do, mom?".
I do wonder if there is a difference medical-wise in dreaming about actually being/peeing in the bathroom vs not dreaming about it - it just happens?
Also the more dilute urine. I cannot remember when the urine is supposed to be the most concentrated - ie with odor and color. First urine of the morning? Dilutes during the day - and is less dilute the last urine of the day/into night?
Your "sample" could have been the last of the previous day and not the first of the new day? Or yours is pretty much the same at all times?
Just thinking out loud - and I guess my thoughts are a bit goofy.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I get this if I'm over-hydrated.
So I learned early on to have a bed pad that is washable, and also to wear Depends to bed. This was during my TPN/IV fluids days...
Also, I used to wet the bed well into my teens, and what finally stopped it was sleeping on a magnetic mattress (covered with plastic, in case I wet on it) for a few nights...
Something about the magnets finally enabled my brain to wake me up to use the bathroom *before* I started to pee...LOL
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Sammy - I was also wondering if you were over-hydrated. Like around IVIG time? Drinking extra fluids?
Also did you have something different to eat or drink during those times that might have irritated your bladder?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Hey there...Just what you needed
So many good idea's above/\.
I think I had a post a Lyme month ago ( that means some time in last year) actually around Feb/March
Did you change any meds lately>> When I tried Bactrim, against my better judgment,
I had a sort of non=feeling from waist down a couple times. A couple of small accidents followed.
So far after stopping med other problem stopped.
I get embarrassed about several things involved with this illness.....it's just a huge bummer.
Did you call your LLMD ,just to see if they have an idea?
Be careful jumping out of bed....once it's done it's done and you have to be careful with that back..Thinking of you.. Nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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