I Want To Scream!!!

[sue1234]

I had my repeat gi visit with the nurse practitioner regarding my bloating. First, whe wanted to help me with my constipation issue. For the second visit, I had presented info regarding my past endoscopies finding ulcers and gastritis. My very last scope was done last year, two weeks after a course of a med to get rid of gastritis, so no wonder everything "looked fine" at that scope. I had taken an antibiotic and OTC digestive supplements, and my bloating disappeared for six weeks. Then it came back.

So, I went expecting to figure out the puzzle as to why I went six weeks without bloating, and try and relate it back to the need for prescription digestive enzymes or an antibiotic, since it may have rid me of intestinal bacteria, either in the stomach or small intestine.

At my second visit, I had to sit in my lawn chair in the lobby, as it helps me sit slumpish. The sliding doors to the outside 97F heat kept opening for people to come into the building for all other appts. I was getting hot and that causes my vasodilation with NO sweating. I then get really really lightheaded and anxious(guess the brain isn't getting enough o2). I asked the receptionists if it was cooler in the back office area, and if I could bring my chair back there and wait. They gave me a snide remark about how it is usually cooler in the waiting area(wrong) and I would be blocking their hallway.

So, I figure if I pass out, the hospital is just across the street.

Secondly, the NP is h**l-bent on constipation. She didn't want to address the severe bloating that pushes into my chest and gives me face pressure. I left with a prescription for Bentyl, an anticholinergic.

So, I read up on it's side effects, and alot of what it lists are already the symptoms I have, especially how it decreases sweating and can cause overheating as a result! I came full circle.

I am just so frustrated that I can't find a doctor that looks at the whole picture and tries to help. Where are the doctors that want to help a formally normal person find a way to get out of their recliner and get a life??? Do they think that I am content sitting in my house???

By the way, this appt. was supposed to be with the head doctor, and I got the NP. I am sure they are fine for run-of-the-mill problems, but not something complicated. I have an RN degree, so I am not bashing nurses by any means. Heck, I think we need someone who is beyond an MD degree!

My husband even said he was about to speak up when he saw it boiling down to a constipation diagnosis. I have flat out told them that constipation does not CAUSE my bloating, but naturally is exacerbated by it. In fact, I had diarrhea for the last 8 years due to having my gallbladder removed, and still had bloating for all those years!

I am just soooo frustrated.

[skiberthoud]

sue1234, I'm so sorry you are so frustrated. I don't know that I can be of much help. I also had that bad bloating...painful and like i was going to burst at any moment. I know how miserable it is. I'm glad you were able to find relief before and I hope you can again soon. For me I know there are certain foods that make it worse - I don't know if you've found that true for you as well. My neuro tried me on mestinon and i can't believe how much it relieves my bloating. even though it doesn't help with all my symptoms, just to have it help with the bloating is so worth it. I'm so sorry...I hope you find someone to listen and act on what they hear for your benefit!

[sue1234]

Tablet, thanks for the support! I had been reading what you wrote a day or two ago about the Mestinon helping you with gi symptoms--so it helped with bloating specifically, huh? Does it help move the whole gi system along, possibly helping with constipation? When I saw you wrote that, I looked up Mestinon and saw it is used in Myasthenia Gravis(plus off-label) to make acetylchonine more available to the receptors.

Then, when I looked up Bentyl, I saw it is an ANTI-cholinergic med, which would be the opposite acting of Mestinon, right?

So when I realized alot of people were helped my Mestinon, I saw the anticholinergic med would probably make me worse. My pulmonologist had run the blood test for myasthenia gravis on me last year, as he said my symptoms sounded like it, but my antibodies were negative.

Now I am wondering if I should ask one of my drs. about trying Mestinon....

[nmorgen]

I also get the severe bloating. When I went GF it helped, but now it's back and I have no idea what is causing it. It can get so bad that it causes tremendous pain under my ribcage. My pulmonary dr told me that one side of my diaphram was higher than normal. I' thinking that is caused by the severe bloating. I wish I had an answer, b/c I know it is horrible. I've been wondering if anyone has had any luck with probiotics? I' also taking motilium which has helped with the constipation, but I can still get the bloating without constipation. Very frustrating.

[skiberthoud]

Sue1234, as far as the Bentyl...it does seem to be opposite inpact on acetylcholine and it's receptors as mestinon. I also see, however, that it's used to treat a variety of issues that are also related to your ANS (parkinsons for instance). I've seen others on this forum that have/ do take Bentyl...maybe they'll have some good input for you.

As far as the mestinon, it has helped with my other GI issues. I was vomitting almost daily before, and now it's only occasionally. I didn't really have constipation, per say, but I did have abdominal discomfort and the feeling that I needed to have a bm all the time (even if i had just had one) and those feelings also went away. For awhile I questioned if the mestinon was really what was making it better so i titrated down my dose and all the unpleasantries returned. Of course, that's just how I react to that medication. We're obviously not all the same.

[juliegee]

Sorry, Sue, how frustrating. I have a few thoughts. What usually causes the bloating in dysautonomia patients is delayed GI motility. Constipation can also be a symptom of this. Because of the slowed motility, we are prone to small intestinal bacterial overgrowths SIBO's. That may be why the antibiotics and probiotics (?) helped. The best antibiotics for this are flagyll (which is pretty nasty) or xifaxcin, which has practically no side effects in my experience. My son and I both take Culturelle (OTC probiotic daily) to prevent SIBO's and balance the bacteria in our GI tracts. If you end up taking an antibiotic, delay the probiotic therapy until you're finished as they will also destroy the good bacteria in the probiotic.

Chances are you do not have garden variety constipation, but treating it is REALLY important. When things get ****** up anywhere in the GI tract, everything backs up and it makes the bloating so much worse. For long term therapy, most GI's recommend Miralax. I have to use a high dose (2-3x normal) to get a result. The key to success is to use it EVERY day without exception. If I skip even one day, I am messed up for weeks. It doesn't result in anything dramatic- just makes me normal. It takes a few days to start working. What are you using for your constipation now? For us dysautonomiacs, it's important to avoid traditional fiber therapy. That will exacerbate the slowed GI motility and actually worsen things substantially. As a matter of fact, LOW fiber, low fat is the best diet for anyone with slowed motility.

Mack's doctors at Hopkins directly linked his GI woes to his dyautonomia. They demonstrated very irregular and ineffective contractions in his small bowel due to nerve damage. I think that holds true for most of us. By treating the dysautonomia (with mestinon or with whatever helps), you are also treating GI issues.

Last thought, you may need to add a GI prokinetic, like Motilium or tiny pediatric dosages of liquid erythromycin to get things moving better.

It was eye-opening to join this forum and see how many of us have similar GI issues. The connection between dysautonomia & slowed GI motility is irrefutable. This was initially Mack's biggest symptom. Sorry if I brought up stuff you already know and are already doing We learned all of this the hard way... and I was hoping to spare you the learning curve .

All the best-

Julie

[issie]

Another really good thing for constipation is magnesium. Remember "Milk of Magnesia". The only thing with it, is it can lower your BP so you might want to try it in the day to make sure it doesn't drop you at night. Unless your BP is high lying down - then perfect. Also, when I got off of wheat and milk products, the swelling in my ab has gotton soooo much better. I did not test allergic to these with traditional allergy test, but found that I do better without them.

As for the Bentyl, I do use it when I have to take a Tramadol. If I take the Tramadol alone, it messes the POTS up - but the combination helps with the POTS. Can't tell you why. I only use them when my pain is so bad I can't sleep. So, it's not something I use on a daily basis. The other alternative is Donnatal which is phennabarbatol. I used to be able to use that, but now I can't. The Bentyl seems to be milder and doesn't drug you so much. You can take them during the day without feeling drugged. I have the lack of sweat issues to, but find that the relief I get from the muscle spasms and tightness from the EDS is worth taking the Bentyl. Not everyone is the same, but for me it is a life saver - at times of need. It is cheap, it's on the $4.00 list at the Fry's store. Might be worth the $4.00 to see how you do. Sometimes, if my colon is in a spasm like my muscles, it relaxs it and then I will go pottie. Sometimes, it's the only way to get a release, because the colon tightens up like the muscles. At least that's what happens with me.

[issie]

Macks Mom,

Sorry, to get your attention this way. I sent you a PM about a week ago and you havent' seen it yet. Got a question.

Issie

[juliegee]

Macks Mom,

Sorry, to get your attention this way. I sent you a PM about a week ago and you havent' seen it yet. Got a question.

Issie

Hi issie-

I think the new forum has us confused :-) I did reply that same day.... Let me peruse around this new site & see if I saved it and I can re-send.

Julie

[issie]

Mack's Mom,

I can resend it. I'm showing that it hasn't been read. Also, sent a PM to dani and didn't get a reply and it's showing not read either.

Issie

[nmorgen]

I guess I need to add a probiotic. Does anyone from the UK have a good online source for probiotics? It's hard for me to find vitamins here in Switzerland. I can't imagine how hard it will be to find a probiotic.

[issie]

I guess I need to add a probiotic. Does anyone from the UK have a good online source for probiotics? It's hard for me to find vitamins here in Switzerland. I can't imagine how hard it will be to find a probiotic.

If, you can do milk products, a real good yougart with all the culture in it, every day will do. Don't get the ones with all the sugar - that undoes the good of it. Just a plain yougart and add some berries or bananas. Maybe a LITTLE honey. Also, Kefir is good - it's not as good because of the sugar - but it taste like a milk shake.

[sue1234]

Julie, I totally believe the SIBO(plus maybe the h. pylori) theory, as I did take Xifaxin and then Flagyl back in May for that. Immediately afterwards on both, I did not feel better. But, a few days later, the bloating disappeared. It's been years since I felt that great(stomach-wise) and could keep my pants buttoned all day! I usually unbutton them as the day goes on with the ever-expanding waistline. I do not, and never have in the last few years, tolerate probiotics. They bloat me way worse than before consuming them. I even tried to just stick it out, but it didn't help, only made things worse.

And because of this forum and all its info, I had asked for a trial of erythromycin, but it did nothing for me. I took it for about 3-4 weeks in March or so, and nothing. I use to use Reglan last year, but with the bad rap it has, quit that.

Issie, I do use Milk of Magnesia right now, and it works great. I can only take it for a couple of days, and then it ends up giving me a headache due to a back muscle spasm. Anytime I take Mg++ I get this same scenario--definitely weird!!

Thanks for the support. I really think I need to borrow my parent's motorhome and travel to a POTS center somewhere in the south. I sure am getting nowhere.

I have never been officially diagnosed with POTS, but re-looking at my original TTT when this all started, my heart rate started at 74, and in ten minutes it was at 110(a 36 point increase), and by the end, it had gotten up to 126(which is a total 52 point increase!!). The doctor put at the bottom of the test copy I got that it was "mild orthostasis"!!!!!

That is the kind of care I have been getting in the last four years!!!

[flop]

Nmorgen, I used to take some really good quality vitamins and probiotics from a UK supplier. I am in the USA at the moment but when I get back home I'll look up the company for you. If I haven't posted in a week's time, send me a PM to remind me (just love brain fog and forgetfulness!).

Flop

[issie]

Tablet, thanks for the support! I had been reading what you wrote a day or two ago about the Mestinon helping you with gi symptoms--so it helped with bloating specifically, huh? Does it help move the whole gi system along, possibly helping with constipation? When I saw you wrote that, I looked up Mestinon and saw it is used in Myasthenia Gravis(plus off-label) to make acetylchonine more available to the receptors.

Then, when I looked up Bentyl, I saw it is an ANTI-cholinergic med, which would be the opposite acting of Mestinon, right?

So when I realized alot of people were helped my Mestinon, I saw the anticholinergic med would probably make me worse. My pulmonologist had run the blood test for myasthenia gravis on me last year, as he said my symptoms sounded like it, but my antibodies were negative.

Now I am wondering if I should ask one of my drs. about trying Mestinon....

Just another note: Mestinon was HORRIBLE for me and the Bentyl not so bad. It depends on what YOU have going on. Remember - we're all different and what will work for one will be AWFUL for another.

[issie]

Another thing to keep in mind about probiotics. When you start them --- you will get worse --- a lot worse. What happens is the good bacteria kills off the bad bacteria and you have a die off that will cause you to think you have the flu. You may get real bad runs with it too. Your body has to detox the bad bacteria and replace it with the good. The bacteria that you will be killing is a normal bacteria that everyone has in their body - it's when it gets out of balance that you have a problem. Some people may think they are reacting to the probiotic when it's the die off they are going through. (IF, YOU ARE ALLERGIC TO MILK ---there are probiotics that are milk free.) If you've been on alot of antibiotics there is a good chance that you've unbalanced the gut ecology and need to rebalance it with the good bacteria. There are other ways too - some people eat fermented vegies. But - then that's a whole other line of thought. The probiotics, as I mentioned before can be obtained by a good cultured yougart or kefir too. Just try to learn to like it without the sugar or fruit - because sugar feeds the wrong kind of bacteria. You can add your own fresh fruit and maybe a little honey.

[emadden514]

Hi! I have some significant GI issues and know how you feel. I agree about SIBO. We only found out that I had after realizing I had POTS and I've had GI issues for as long as I've had POTS symptoms. (About 13 years) I have Gastroparesis, Gastritis, GERD, and IBS as well. Oh I also have Dysphagia. I took Bentyl, but it did not help me. I take Amitiza, but see no change in bloating, only the constipation. I see the most significant change in bloating while on the Xifaxin. Miralax did not work for me and Reglan had too many side effects. I also take Align when not on an antibiotic. Are they going to do any testing to find the cause of the bloating? I also have a low fiber, low fat diet. Good luck.

Elizabeth

[juliegee]

Julie, I totally believe the SIBO(plus maybe the h. pylori) theory, as I did take Xifaxin and then Flagyl back in May for that. Immediately afterwards on both, I did not feel better. But, a few days later, the bloating disappeared. It's been years since I felt that great(stomach-wise) and could keep my pants buttoned all day! I usually unbutton them as the day goes on with the ever-expanding waistline. I do not, and never have in the last few years, tolerate probiotics. They bloat me way worse than before consuming them. I even tried to just stick it out, but it didn't help, only made things worse.

And because of this forum and all its info, I had asked for a trial of erythromycin, but it did nothing for me. I took it for about 3-4 weeks in March or so, and nothing. I use to use Reglan last year, but with the bad rap it has, quit that.

Issie, I do use Milk of Magnesia right now, and it works great. I can only take it for a couple of days, and then it ends up giving me a headache due to a back muscle spasm. Anytime I take Mg++ I get this same scenario--definitely weird!!

Thanks for the support. I really think I need to borrow my parent's motorhome and travel to a POTS center somewhere in the south. I sure am getting nowhere.

I have never been officially diagnosed with POTS, but re-looking at my original TTT when this all started, my heart rate started at 74, and in ten minutes it was at 110(a 36 point increase), and by the end, it had gotten up to 126(which is a total 52 point increase!!). The doctor put at the bottom of the test copy I got that it was "mild orthostasis"!!!!!

That is the kind of care I have been getting in the last four years!!!

_____________________________________________________________________________________________________________

Frustrating! You KNOW you have POTS Tell me how you took the erythromycin. Through trial & error we have learned that there are nuances that make a HUGE difference. If that truly is a dead end, consider Motillium/domperidone.

I get WHY you stop the MOM (totally understandable!) but awful for your motility. Consistency is the key to constipation. Have you tried Miralax- life changing for me.

If it's a SIBO, Xifaxin is the way to go, but you can still overcome it with a hefty dose of probiotics.

Sorry you feel so uncomfortable. Is your diet low fiber/low fat...white, white, white (rice, bread, pasta)- really helps.

Hugs-

Julie