Aud E

Gastro did a bunch of workup. We tried Elavil which lowered my blood pressure to 68/43 and 30 mg caused constipation where I would be awake at 2 am till 8 am with abdominal gas, pain and distention. Then we tried Paxil to treat as IBS. I was still having waking gas attacks all night causing waking tachycardia and polyuria (about 8 trips to bathroom at night) with normal stools at daybreak followed by mild diarrhea. Paxil and sleep deprivation was also sending me into despair. Finally I asked if I could go back on Cymbalta since none of this was happening on it. The idea came from another poster who said that when she stopped a certain antidepressant, it was like her guts stopped working. In some ways, it was like my motility stopped working. An abdominal MRI showed a lot a feces sitting all throughout my intestines. Since restarting Cymbalta, the attacks window moved and lessened where now the waking gas attack only happens when waking in the morning. It is as though the stool needs to get out and the slowed motility is causing gas. I went for a second opinion to Cedars-Sinai Motility Center. The doctor there would like to do a Barium scan with small bowel follow through where you are standing at the end. She wishes to rule out visceroptosis from Ehlers-Danlos hypermobility where the organs can hang too low and create temporary bowel blockages. Apparently if so, there are exercises they can give and might add low-dose Erythromycin as a movement agent where the antibiotic component is not active. Otherwise, Bentyl Gasex, nor Immodium helped. Basically I was awoken by gas all night when already have acute insomnia, then at daybreak had to run to bathroom where first stool was normal, second was ribbon-like (half floating and half sinking) and then 2-3 more movements would be mild diarrhea ending before noon. This went on for nine months so you can imagine my depression for lack of sleep and fear by now. The cymbalta is helping change the pattern. But the cause is yet unknown. Something has been causing tachy up to 140 BPM while sleeping per heart monitor. Digoxin microdose at bedtime is helping control night tachy for now. I have a prescription for levsin/hyoscamine that I have not tried yet because I was waiting for Cedars consult before starting something new and the spasm which occurs during attacks doesn't hurt, the gas and distention hurts (and was hard to release gas) plus again anything which constipates makes matters worse. I had a normal recent upper endoscopy/enteroscopy and colonoscopy. What medications did not you have in mind for motility? Again, we thought we needed to slow things but it is appearing perhaps the opposite now. Also we tried rifaximin to rule out SIBO but that did not change the pattern and it wiped me out. I have been following a low-fermentation diet posted by Cedars intended for SIBO online and it helped reduce a few attacks by eating less raw salads and eliminating cruciferous veggies: https://www.siboinfo.com/uploads/5/4/8/4/5484269/low_fermentation_diet.pdf. I hope to get to ask more questions as to cause of gas and diet at followup.

I was on diltiazem to control sporadic blood pressure and sporadic tachycardia during the day and a different calcium channel blocker called digoxin (very low dose to control night tachycardia). I still get palpatations during night episodes but my BP and heart are under control which is better for the valves. I did not get any side effects from either that I was aware of. My cardiologist did this as a means to not put me on beta blockers just yet due to my younger age, beta blockers effects on depression, energy and respiration.

This was happening to me last fall. A lot of cardiologists now have this Zio patch heart monitor you wear for two weeks and then get a report from. It has an event button and you keep a log when you are having symptoms/press the event button. The amazing part is that it is the size of a sticker and you can wear it in the shower. No hefty pack to carry around. When they later needed me live monitored for three weeks, I did have to carry the pack around so you can't win them all. The BP starts out low in morning. Strangely if I walk laps around the living room, I can get my BP up. If I lie down, BP is fine, if I sit, BP drops to 48 which is scaring me. I have been able to get it up to 110/ 65 at least using sodium chloride tablets bought online (what they give you in intravenous fluids I believe), compression socks up to knees. I also read today on Mayo that caffeine can help some elevate blood pressure if it does not worsen your tachycardia. They recommend getting a reading before and after. If you try salt tablets (it worked better than table salts for me), start with one and check BP, then check BP later before adding more. UPDATE: learned from cardiologist salt tabs can increase nausea. Also was told to lie down and elevate feet so blood is going to heart. Cardiologist also told me to hydrate when this happens and compression stockings help. Of course she added electrolytes but some of the ingredients in mine are contraindicated with my meds. Lastly, if you can find a cardiologist who has any experience with dysautonomia, it helps with not simply getting put on meds that worsen matters. I also gave up caffeine which helped tachycardia but has been horrible to adapt to energy wise. Lastly, regardless of what your pharmacy or doctors warn about contraindications, I find it useful to google your prescriptions followed by PI which means prescribing information. It will either be published by the drug manufacturer or be posted by the FDA. It is typically the tiny folded piece of paper that comes glued to the outside of the prescription bottle which no one reads. Reading them line by line and looking up terms I didn't understand, I have found contraindications on my medications that neither doctors nor pharmacy seemed to know of or warn me against and requested meds that did not have those contraindications. It has been a lot of work but I am feeling on a better track at least. Not having respiratory distress while sleeping for example. Also there is a free website you can sign up for called Epocrates that will check interactions between your drugs to see whether any combo might be causing low blood pressure. Also calling one's pharmacist to see which med could be lowering blood pressure and talk to your doctor about a substitute for that med. Good luck, I know it is scary and you really should see a cardiologist especially if you are feeling faint as you want to be sure your heart is getting enough blood.

Mayo has a blood test for autoimmune dysautonomia. Also if you have MCAS (mast cell activation disorder), you have to find an allergist who treats this and have blood test run to see if you have if, you might benefit from taking oral cromolyn (4X a day half an hour before meals). If the POTs flareup is so far and few between allergy invasions, then you might weight the tradeoffs. I tried cromolyn and there were no significant side effects. It can cost between $100-$200 a month depending on your insurance.

Might I ask which tricyclic you use and the dose? If that is too personal a question, please don't worry about not answering. Thanks

The generic name for cymbalta is duloxetine. Here is a link to the article: https://ww2.mc.vanderbilt.edu/adc/43572

My psychiatrist is worried about the Tricyclics due to weight gain also. I have learned from Vanderbilt University's dysautonomia site that cymbalta beyond the therapeutic dose can give POTs symptoms to people without POTs (their is a link to the posting below). I think it was contributing to my tachycardia. I do not quite qualify as having POTs (am like ten beats shy) but had my best tilt table test yet once I got off cymbalta. Apparently untreated IBS can also contibute to tachycardia, so round and round This being said, once I stopped Lyrica, Cymbalta, and Wellbutrin for tilt table tests to rule out medication effect, I got diarrhea for nine months (daily) and a CT scan at 8:20 pm showed my intestines full of stool, but then I was having hypermobility while asleep ending in 4-7 a.m. diarrhea. So, I am restarting cymbalta being it wasn't happening then (only night tachy). Elavil did not work to capture the diarrhea (lead to constipation and dropped my BP to 87/43 while sitting upright), and we tried Paxil but that made me agitated. I had some standing tachycardia with cymbalta (not enough beats to qualify as POTs) but at least was higher functioning than this. If I have to add back in Wellbutrin and Lyrica to slow motility, may try as I cannot live like this. Weight has dropped so fast that I developed gallstones in a matter of months.

Per my motility gastroenterologist, he believes my IBS is related to autonomic neuropathy as well. He has a lot of patients with dysautonomia as he sits downstairs from the automonic function lab at his clinic.

Thanks TCP

Thanks to you both

Just an update that I had my gallbladder removed. It showed chronic inflammation, stones, was sludgy when removed (and we previously knew about the biliary dyskinesia or low functioning gallbladder). Sadly, my diarrhea pattern is not improving. I put a question out whether anyone has found an anti-depressant good for IBS with diarrhea that does not worsen tachycardia or weight gain in personal experiences. Thanks.

Has anyone had luck with an anti-depressant for IBS with diarrhea which does not significantly worsen your tachycardia or weight gain? My GI attacks of gas, bloating and pain are mostly at night with morning diarrhea. I just had gallbladder removed almost two weeks ago but same diarrhea pattern is not improving. First bowel movement normal, then ribbons, then diarrhea since November (five weeks after stopping cymbalta and wellbutrin for repeat tilt table testing to rule out medication effect). It did seem that cymbalta was worsening dysautonomia symptoms.

Thanks firewatcher. Exactly what I am wondering. Perfect.

Thank you all for replying. Regarding GERD, I have had it in the past and not reclining for at least an hour to two hours after eating helped me. It is difficult when not feeling well but they say the head should just be elevated six inches higher than stomach until digested. Others have told me I probably don't have to hold out as long as I am seated up, but it really fixed the reflux so I stuck with it. As far as diet changes, some hospital healthcare institutions offer free or low-cost cancer and heart health cooking series. Near me, one major hospital system offered it free through the Coleman Cancer foundation and another medical system charged $15 per class. They are also geared towards diabetes, people who just had quadruple bypasses, etc. Some are offered at lunch time and others in the evenings and they feed you whatever the class taught you to make. It really helped me learn how to eat a whole-foods based, nutrient-dense diet. I took it slow (over several years as I could). It was the only thing I could do to improve my health beside walking when able.

I have dysautonomia and Ehlers-Danlos III (hypermobile). My gallbladder has a 12% ejection fraction rate (no sludge or stones), intermittent upper right pain, and have chronic diarrhea since November where no medications help. I wake several times per night with gas, tachycardia, lower abdomen pain (from belly button to lower right) & shaking (ruling out chronic appendicitis via CT tomorrow). My doctors disagree whether gallbladders are causal (primary). I am curious how many had POSITIVE experiences following gallbladder removal (without sludge or stones) and who by following a healthy, high-fiber diet avoid chronic diarrhea? I read many bad experiences including secondary infections & associated risks. Trying to get an idea of those with dysautonomia (and possibly EDS) where it improved symptoms before considering removal. Also going to start a trial of 5mL oral cromolyn before each meal and bedtime to see if improves symptoms.