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.

Thank you all for these recommendations. We were in the process of moving the last several weeks. It was nice to log back in after the move and find these tips waiting. For those with dermatitis/skin allergies, we use Seventh Generation Free and Clear for laundry and it cleans well without fragrance. There is even a 2X strength. Thank you again for all these neutral options you found effective. It is amazing how many tools nature gives us when the ingredients are honed properly. Much appreciated.

Can anyone recommend household cleaning products that effectively clean but do not aggravate dermatitis or autoimmune issues? I know that their are a ton of organic or green products, but many do not clean effectively. I seem to be allergic to most things with fragrances. If there are products you use to clean at home which do not aggravate your health issues, please share.

Thank you Pistol. I should clarify that it wasn't so much a cure but losing the weight abated the problem for many years. I am having autoimmune-related weight gain now despite eating a clinically clean diet. Heavier than I have been my whole life, the intracranial hypertension has not returned (verified with spinal taps) other than intermittent mild headaches and blurred vision. The most disabling challenge is if I use my hands or arms away from my body for more than a few minutes, my trapezius area swells up and I even get hazy vision. There is some sort of complex happening whether related to cerebral spinal flow, vascular.... My neurologists here feel something more is going on than just thoracic outlet syndrome to that area. I am going to make the financial investment to go to the Cleveland Clinic this fall (scheduled and waiting). We also do not know what is causing small fiber neuropathy and intermittent sinus tachycardia/sporadic blood pressure. It's frustrating but am dusting off, licking wounds and heading back in again to try and find answers. I will share anything we discover. I wish only the best for you too.

Sorry for the delayed reply. I started getting headaches around the temples, nose ridge, and top front half of my skull, low-grade fevers and hallows arounds lights. An internist found my optic nerve pulsing (when they peer inside your eyes with a scope). I was referred to a UCLA neurologist. He did a spinal tap and my opening pressure was so high that I spurted spinal fluid out of the gauge and across the room. He had never seen that in 12 years of practice. I had already been having acute chronic insomnia by this point as well. The neurologist thought that my being overweight by 40 pounds at that time was causing me to produce too much testosterone (both men and women apparently produce both testosterone and estrogren). He told me I needed to lose 40 pounds immediately and to keep it off for the rest of my life. After losing this weight through exercise, and his prescription of vitamin k, and an anti-diuretic, I was considered in remission simply through eye exam.

Thank you for that. I will see what I can find....Never Bet Against Occam – The Book by Dr. Afrin? I will check it out. Thank you. It is odd steaming windows when it's summer and there isn't humidity conditions that could explain it and when your area in the car has steamed windows and no one else's does. Thanks again for the book tip.

I just learned about something called called compensatory hyperhidrosis during this video Overview of Autonomic Disorders by Dr. Brent Goodman. It's 26 minutes long and explains a lot. Overview of Autonomic Dysfunction

Thanks for your reply. What type of junk did they find in your spine, like osteoarthritic deterioration/disc disease or stenosis? I have areas of these as well and wonder how much this disrupts flow of CSF or blood. In my first tilt table test, they did a cranial doppler and found 20% less blood flow to my brain when upright so again could friction, or the circulation trying to push through, generate heat? I was also told this was dysautonomia but can't find research about generating heat from the head specifically, although everything mentions trouble regulating body temperature in general. I am having resting tachycardia where they suspect POTs and have a longer upcoming tilt table test. Again, thanks for sharing that I am not alone in the "river or nothing". I too get night sweats and eventually hope to see a hormone specialist.

I had intracranial hypertension when I was 26. I am now 46 and have a lot of heat coming from my head. It can happen spontaneously at rest or worsen with activity. I fog the car windows only on my side of the car during any weather. My last spinal tap showed normal opening pressure. I have light and sound sensitivity. I failed the sweat tests during the tilt table but when eating or conversing, sweat will just start running down the sides of the neck from my head. Sweat also appears above the upper lip and at the base of my skull. The heat is so intense that someone jumped back out of the car after walking because I was like a furnace. Does anyone else have this problem and if so, what diagnosis were you given? Is there a doctor anywhere in the US who helped by knowing what this is? Also a brain MRI showed hypoplastic appearance of the pituitary in case you are a medical professional. I get slight headaches namely around the upper crown of the skull and around the nose bridge, tear ducts and temples. Thanks for any input.

OK thank you for the hydration tip.

Thank you both for the info. I also have small fiber neuropathy (possibly ganglionopathy) as well as psoriatic arthritis, psoriasis and enthesitis. The psoriatic arthritis medication Otezla increased neuropathy pain so the next step is biologics. I am glad to hear that the IVIg helped the neuropathy at least. I have confirmation of autonomic neuropathy affecting the cardio system, gastro, temperature regulation/sweating, (have chronic insomnia) plus I have trouble with holding my breath and shallow breathing complicated by EDS hypermobile form. The first tilt table test would be repeated to confirm or rule out POTs, so I posed the question of whether a dysautonomia center next might be able to flesh out whether the underlying causes are viral, autoimmune, or genetic for a more encompassing treatment approach. The first POTs test was solely 10 minutes long and was 3 heartbeats shy of a POTs diagnosis. No matter where I go will involve hotel stay at this point and maxed out out-of-pockets for the year. But if it could improve quality of life...? I have also had benign intracranial hypertension in the past. From reading, it seems one benefit of Mayo clinic is that they test on multiple fronts at once. I just don't know how much more info there is to gain other than the underlying basis and possibly more advanced treatment protocols. Clb75, did you tolerate the IVIg well? One thing I feel to hearing is that quality of life has not greatly improved for many despite all the data and diagnoses so it's unclear whether the science just isn't there yet and to hold out on all the spending till there are further breakthroughs. Thanks again.