Curious About Symptoms

[Beccapooh]

Okay, this is horribly embarrassing but I desperately need to know if anyone else has this issue.

As delicate as it is, it's very GROSS

Does anyone else seem to sometimes have trouble controlling (gulp) their bowels? I seem to be getting less and less control over them. I seem to have a lot of rectal pressure all the time anyway so I'm having a hard time "keeping things together" if you know what I mean? Am I crazy?

Also, I've noticed lately that I can look at a word and think something totally different. It's along the same lines as the word I've read, or contains similar letters, but isn't the right word. For example, the other night I was a dinner with my sister and my girls and I read the back of a guy's shirt and I actually said outloud "Oh, I've been there....Tortilla!" My sister looked around and said "WHA??" I said it again "Tortilla" and pointed to the guys shirt that said "Baja". Now, I know y'all might not get the connection but I was trying to say that I've been to the Baja Pennisula in Mexico. Mexico - tortilla. Get it now??

I'll look at a car that's green and think to myself "What a pretty blue car." PLEASE GOD HELP ME!! AM I LOSING MY MIND?

It's also quite hard to type because I have this weirdness where I can't actually type and talk or think or anything, I have to focus on typing. Now, I'm a multi-tasker to the Nth degee, but now I can't seem to walk and chew gum at the same time! I forget people's names and appointments that were made.

I'm starting to become afraid to leave the house because I'm afraid that I might poop in my pants and forget how to get home again!!!!!!

Rebecca

[labas_2u@shaw.ca]

Rebecca:

No you are not losing your mind. Welcome to the world of Dysautonomia!

p.s. sometimes I leave out some letters of words I am writing out at work especially the first letter (?)

The people I work with think I have dyslexia!

Maggs

[ellen]

Dear Rebecca, YES I definitely recognize the strange mental fog you are experiencing. I was afraid I was getting Alzheimers for a while (who knows). I was also a multitasker (I designed software before I had kids) and now I can't even USE the software properly.

As for your bowel problems, I think you should discuss it with your doctor. Why wait until it's progressed any further? Just my humble opinion, maybe someone else here has more to offer, but just the STRESS of that adds to your illness, and we need all the support we can get.

We're all dealing with different symptoms, and I appreciate your willingness to share this very difficult one with us. -Ellen

[michiganjan]

I have had short memory loss at times, but have not not had the symptoms you describe with the word. Have you told your doctor about the word mix-up? I think you should.

I did have some problems with short-term memory loss and Dr. Grubb prescribed cerefolin and I am not bothered by the memory loss any more at all. It was so bad at one point that I was talking to my son on the phone and couldn't remember his name!

[dizzygirl]

Hi I experience the same things you speak of... its is part fo the potsy package that we have been dealt......maybe you could talk to your doc about the bowel issues.. I know I've found levsin to help on some occasion..

good lcuk dear and welcome!

dizz

[Guest dionna]

brain fog... memory loss... all of it. i forget how to spell simple words, forget peoples names, i notice all the time that i will be talking about something and mid-sentence just shut up and forget that i was saying anything to begin with. i am constantly repeating questions and asking about things that i should perfectly well know the answers to. i mix up colors, left and right (okay yeah i know a lot of people do that but come on i was in the marine corps and i definately know my left from my right, we were always drilling [ever see the silent drill team?] and everything else we did had its left or right side to it and if you messed up you felt the rath- i was trained well), names, places, numbers, letters, and pretty much anything i can think of, i can forget or mix up.

bowels- i have my share of problems but i haven't almost soiled myself, i think that would be the worst symptom and i sympathize with you all the way on that one. i surely hope that you find an answer and help with that issue. by the way, it isn't gross... we all have the stomach issues at some point in time, dysautonomia or not. good luck and take care.

dionna

[Guest CyberPixie]

I know it's not funny but your last sentance did make me laugh. You're not alone I literally have to run (and thats hard to do in itself when you have POTS!) and I have an ensuite about 3 feet away!

[BuddyLeesWife]

My husband had severe bowel problems and it was not a symptom he could live with. He also had the same problem with his bladder so he was referred to a urologist. The urologist diagnosed neurogeic bladder and prescribed Detrol LA and was hopeful that it would work on the bowels too. It has been a wonder drug and even though he still occasionally has a frequent urge he has enough time to get somewhere to take care of it. The effect of the drug was immediate - he has been on it almost a year now with no mishaps. He does experience dry mouth as a side-effect.

If you decide to check it out with your doctor, make sure they read the details - it is a "smooth muscle antispasmotic" which is why the urologist thought it might work for the bowels too.

[nadine]

I don't have much more to add, have all the same cognitive problems and coordination, balance problems as well. As far as the bathroom issue, this is big for me also. There is no waiting, which makes it very difficult to go anywhere. I would most def. tell your physician about your concerns, it is good to keep them updated if things are changing- to be sure there isn't something else going on or to help with symptom control.

Good luck. I am thinking I need some type of RV with a portable potty whenever I leave- so not fun!!

[Beccapooh]

Hey guys, thank you!! It's nice (for some reason) to know that I'm not alone in all this weirdness.

I've been ill for so long that I can't even remember what it feels like to be normal!!! Then, the proverbial POOP hit the fan last summer and I've never been more ill in my whole life!! I'm still waiting to "HEAL" and return to normal (whatever normal will be for me, aye?).

I'm excited at the idea that I might actually get some treatment (other than Mestinon and IVIG) that helps relieve some of these persistent symptoms!! I know that being excited at the idea of being DX with a disease is (should be) horrible, but I also know that y'all understand what I mean, right??

Anyway, thank you all for being so kind and reaching out to me like you have. I have been living on the MG Forums for the last year and it feels kinda weird being someplace new. Y'all have embraced me and made me feel welcome, so....here it goes again........THANK YOU!!!

Rebecca

[MightyMouse]

Regarding the bowel issues, the only time I had trouble controlling them I actually didn't know that I had salmonella. I never vomitted or had diarhea--my only symptom was loss of control when I had to "go". I had like a 10 second warning and if I didn't get to a bathroom and scoot my clothes off fast enough, well, you know what happened next!

My old mantra that veterans here will remember:

If the symptom is new, not normal for you, and lasts more than a few days (my doc and I have a 4 day rule), go to the DOCTOR!!

nina

[jhjd]

I do the wrong word thing ALL THE TIME. I'll blank on a word, or use the wrong word, or get 'distracted'- Like if I'm talking to DH in the car and see a sign, I'll say the word of the sign instead of the next word in my sentence. So we have dialogues like this all the time: Him: "How was your day?" Me: "Oh, it was Applebees." Him: "You went to Applebees?" Me: "No, it was...um..you know...(making frantic handgestures, finally settling on a thumbs up) fine! It was fine." Drives both of us crazy. I got an 800 on the SAT verbal part (old scoring system, obviously) and now I tell him my day was Applebees.

[MomtoGiuliana]

Many of us experience what is called "brain fog"--which can include difficulty with memory, getting words out, thinking a problem through. Incontinence is not generally associated with POTS, but there are many symptoms that are possible with POTS. As Nina stated, if these are new symptoms for you, please contact your doctor.

Katherine

[lthomas521]

Soluble fiber might be helpful to people who have trouble with their bowels, either too fast or too slow. I read recently on a Web site for irritable bowel syndrome that people with IBS may have worsening of their symptoms if they eat fatty foods or take caffeine or other stimulants (e.g., chocolate) or if they eat a lot of insoluble fiber. But the site recommended soluble fiber. The hard part was getting people to try the recommendation: people with the runs didn't want to take Metamucil, because they thought of it as a laxative.

[bgsu4]

I had trouble for about a year, only in the AM. It actually went on before I had my first POTS episode in April of '05. It started in April of '04 4 months after I had a real bad flu in Dec. of '03. My friend and I used to laugh when I had to pull over on the Highway at 6am going to our Saturday golf league. Never thought it was a precursor to this, only too much coffee in the morning. For the past year it comes and goes and when I have it for 2-3 days mt POTS symptoms are worse, when my bowels are working right I usually have good days.

Dr. Chelimsky at University hospital of Cleveland is doing a study on the relation of IBS like symptoms and the relation to POTS. I believe his wife is a gastroenterologist at UH. When I went to get my testing done we talked about it and he was very interested with the info on the year I had these problems. Used to make sure I could always find a bathroom in the AM now I just look for places to sit and put my feet up.

[Sunfish]

regarding control of the bowels, i have had problems with this for the first time ever in the past several months and it is horrible and gross. it happened twice while i was in the hospital in march and has happened 3 times since. for me i have severe dysmotility and thus am generally quite constipated, so it is likely "leakage" around stools that are having a hard time moving through my pipes, if you get my gist. the icky thing for me (not that there's anything non-icky about it) is that i have virtually no warning whatsoever. it simply has felt like i were about to pass gas and then the result was essentially liquid. ewwww. ewwww. ewwww. fiber is a no-go for me b/c of the gastroparesis. i'm actually on TPN (IV nutrition) these days and my oral intake is little to none depending on the day. so i don't have an answer but i can empathize.

regarding "brain fog" i've had cognitive issues for years when i'm doing particularly poorly, am "crashed"/extra tired/etc.. years back concerta helped me with this as a bonus to its help with my BP/HR. this year though the cognitive issues have gotten a lot worse for me, to the point that i couldn't read or write more than a paragraph or two at a time. it was like this for me for over 4 months non-stop. i've been tentatively diagnosed with a mitochondrial disease, though, and about a month after starting some medications for that have had vast improvement in that regard. physically they've done nothing but cognitively i can read & write again for an hour or two at a time (if laying down) which is a HUGE improvement that i'm relishing.

hang in there,

melissa

[Babettegall]

Rebecca,

Welcome to the group!

As many of the others have already stated, you are DEFINITELY not alone in your trials & tribulations as well as your symptoms. The brain fog and other cognitive impairments are some of my biggest issues.

And as far as the bowels are concerned.......well, I hear you there too!

Do you find yourself waking up in the morning with terrible backaches, only to find that once you run to the bathroom to "relieve" your bowels (like you have a choice in the matter), that the pain begins to subside? I've posted the same question you did with respect to others who also suffer from "near explosions", which are uncontrollable. There were many replies, which always lead me back to discussing it with my doctor. My GP said that it could be caused by pooling in the abdomen, which isn't uncommon in POTS/Dysautonomia pts. The pooling creates unbearable pressure which creates an enormous amount of gas, diaharhea and total discomfort.

I've tried all the dietary changes that were suggested, however, none of them helped. I'm going to have to ask him (my GP) to either refer me to a specialist or seek some alternative treatments (not sure what they could be at this point, but....).

In short, I'm not ready for the daily use of "depends", however, I can't afford to keep ruining my clothing.....yes, it's gotten THAT bad.

Hang in there, and feel free to send a personal message or post your updates as you feel like, we are ALWAYS here for you.

If I get any additional info from my next doctors appointment, I'll let you and the rest of the group know!