Dysautonomia in the gut/gastro system? Hypersensitivity to medication

[judyinthesky]

Hi!

I would like to find out whether there is any form of dysautonomia that only effects the gut?  And your ideas for hypersensitivity to medications, in particular antidepressants (and the solutions!)

I have diarrhea that cannot be solved by the usual methods. I also had a thyroidectomy and have some dysautonomia-like things on my body, like always low blood pressure and always sweaty hands). Burning Mouth Syndrome. 

I have been diagnosed with pancreatic insufficiency and that should be responsible for parts of the diarrhoea, and parts of it might be IBS (or maybe that IS nothing else than autonomic misfunction, in the end, I guess). However, pancreatic enzymes (including bile binders) are not helping... nor does anything else so far. The gastro issue is stronger in the morning, and my gut nerves are responsible for my anxiety.

I react very strongly to antidepressants (usually only need 1/8 of it and feel effects and side effects immediately). It is an issue!

I get some insomnia with what feels like adrenaline rushes.  My anxiety is also connected to my gut (but I guess it is a chicken or egg situation). All of this nerve stuff happened after I was hyperthyroid by accident (or after a virus).

I was wondering whether there are other things that people who have dysautonomia and gut issues do, that I could consider as well (any investigations or medications). I am a bit at a loss.

Anyone else here that is supersuperhypersensitive to antidepressants? That would have been my go-to next.

I also have, as a tendency, better times during the second half of the day (nervousness-wise and digestion-wise).

Thanks for your brains and ideas!

[Delta]

Hi, @judyinthesky!

I'm sorry you are going through this . . . I don't know if there is any type of dysautonomia that affects *only* the gut,  but what I can tell you is that once my POTS showed up full-on, every single day from that day on I had gut issues, until I was diagnosed about four months later and started taking a low dose of a beta blocker. I had diarrhea and nausea almost every single morning. I made light of it by saying, "Pepto-Bismol, not just for breakfast anymore!" but it was annoying. Like you, my GI issues were stronger in the morning. (You also mentioned feeling better during the second part of your day - this was me, too, and actually, from what I've been told and read, it's pretty common with POTS). I also developed gastroparesis on two different occasions within those four months, each lasting about two weeks, in which I lost ten lbs. each time because I could only eat teeny tiny bites of anything. I also started burping all the time, which at first made me think the problem might be my heart because I was also having the palpitations and I have read many times that symptoms of a heart attack could mimic indigestion! I also got what I believe were adrenaline rushes.

Have you been tested for dysautonomia at all; i.e., tilt table test? Have you had the opportunity to discuss the POTS/dysautonomia possibility with a doctor? (I generally say POTS because my doc said to me, "You have POTS", but POTS is a form of dysautonomia). Did your symptoms appear shortly after you began taking any new medications? I've never taken an antidepressant and I wasn't taking any meds when the POTS showed up, but I had a few symptoms in the months and even years leading up to it that I had been blowing off and that I realize now were related.

If I were in your shoes, I would do two things -  first (and you may have already done this) - if you were taking any meds or supplements before your symptoms began, research the side effects.  Our pharmacy gives out these handouts with every filled prescription that list possible side effects, and even those may not list every possibility. Don't change or stop taking any meds without first talking with your doc, but at least talk to the doc or even your pharmacist if you think there may be a possibility you are experiencing side effects. The second thing I would do is to be evaluated specifically for dysautonomia. In my case, I ran the gauntlet of doctors and specialists before an endocrinologist who ran many tests that turned up nothing referred me to a neurologist, who did in fact diagnose me. I went to a GI doc the second time I had the gastroparesis and by that time the neuro had already scheduled me for a tilt table test for POTS, so when I told the gastro that, he said, "See if it's POTS - if it is, your treatment will likely help this problem. If it's not POTS, come back and see me!"  He knew that POTS affects the gut. So far, the treatment - the low-dose beta blocker - has been working. Knock wood!!

I hope you feel better soon. Believe me, you will find that people here are very kind. There is a lot of good information on this forum and it was very helpful to me when I was stumbling around trying to find my way. In fact, it still is helpful to me! Wishing you all the best and happy and healthy days ahead!

P.S. Edited - apology for length!! POTS has clearly not affected my ability to be long-winded!

[judyinthesky]

Thank you very much for the long-winded reply! Any ideas on gut dysautonomia?

I don't think I have POTS as I do not notice any changes in that regard. I do have some heart arrythmia, but that is mostly related to hormonal changes and anxiety. I guess I would have to have some more heart-related stuff for that, but my BP is always low and my heart rate also.

I believe also that other stress-responses or stressful stuff going on in the body can create gut issues. But it is something that is not often talked about, so it is hard to compare and to find the right treatment. So far nothing has helped. 

The medication I take is sort of unrelated to the symptoms. I can identify hyperthyroidism as a trigger, and it was all post-viral... but then again probably just when my body has been at a weak spot. 

Thanks!

[BeachLover]

Happy Friday!  I've never heard of a form of dysautonomia that only affects the gut.  Like you and Delta, my symptoms are typically the worst in the AM.  When our gut bacteria is disrupted it can definitely cause changes in our mental health.  When my POTS symptoms are worse my anxiety is worse (and conversely, stress makes my POTS symptoms worse).  Due to my nervous system being so sensitive, I typically react strongly to medications and often have to take a lower dose than an average person or can't tolerate some medications at all (including OTCs).   I don't know all of your symptoms, but it could be worth it to check out these conditions: Small intestinal bacterial overgrowth (SIBO), leaky gut, and gastroperesis. 

I've had a lot of antibiotic damage in my lifetime, and most recently couldn't get rid of an infection for almost a year, then continued to get secondary infections.  Antibiotics usually give me side effects and due to having to take them for so long it caused my POTS to get tremendously worse.  I've been working to try to repair my gut with food (I do a mainly Whole 30/paleo diet because I'm allergic to milk and gluten, can't tolerate high carbs, etc.), supplements (probiotics, L-glutamine, collagen, magnesium -magnesium is great for constipation but would recommend being careful taking that with diarrhea), yoga, acupuncture, etc.     

I will never try another anti-depressant.  Doctors have patients stay on them for far too long, don't have appropriate plans for weaning off, and they have very low rates of success but high rates of side effects.  Before I was diagnosed with POTS I was misdiagnosed as the POTS being anxiety and prescribed several medications such as Xanax, Klonipin (both were PRN; they made my tachycardia and anxiety worse), Prozac, and Paxil (also didn't help and got sick coming off of it).  During my last inpatient stay for POTS 10 years ago they put me on Cymbalta among other things.  It was a newer medication at the time and I thought it was a safer alternative to pain medication.  It was supposed to kill two birds with one stone in that they said it would help my POTS and also pain (I had several surgeries during that time).  I always have a hard time weaning off medications, but Cymbalta took me several years to wean off and it was the worst medication to wean off of.  Cymbalta caused me to gain a lot of weight (which came off only after I was completely off of it).  Also, my fingernails started growing long again once I came off of it.  I've been off of Cymbalta 2 years now and I think my body is still healing from the damage; it was after coming off that medication that I developed an infection that took me almost a year to fight off, and I had major issues absorbing vitamins/nutrients.    

Hoping that in this new year you will find more answers for healing your health!:)

 

 

 

[judyinthesky]

Thank you!

Yes SIBO is an interesting idea. My internist says though there are other gut things that need to be fixed first before we look at that - then none of the strategies have been working so far. So we might look at it...

It is interesting that you consider one reason for medication hypersensitivity your sensitive nervous system. I would be interested whether anyone has any idea on that... I am a bit at a loss why I need so supersmall doses of everything. But I reckon that is the reason that I posted here... because maybe there are others with explanation for their sensitive nervous systems!

Cheers

[Pistol]

@judyinthesky- my husband does not have POTS (thank God) but he has been struggling for many years with SIBO. Terrible bloating, floating stools, abdominal cramps … GI specialists checked everything and could not find anything. they also poo-pooed the idea of SIBO. So our wonderful PCP treated him with Flagyl and Cipro, put him on a low fat and low sugar diet and then prescribed a quality Pre- and Probionic supplement. TADA!!!! Bloating only appears after breaking his diet and he no longer has bowel problems. And no more cramps!

[BeachLover]

Hi!  I'm going to throw another idea out here.  There is a personality type (NOT a disorder) known as Highly Sensitive Person; about 15-20% of the population are HSPs.  Dr. Elaine Aron has been the pioneer on researching this personality type (https://hsperson.com/).  Research has now shown that the brains and nervous systems of HSPS are different than non-HSPs.  HSPs are very sensitive to medication.  I asked a cardiologist at the Mayo Clinic if there is a correlation/connection between HSPs and POTS (since they both have sensitive nervous systems) but he said that no research has been done on this (I couldn't find any either; most therapists aren't aware of what HSP means so I would guess most doctors haven't heard of it either).  I wonder if being a HSP made it more likely that someone would develop POTS.  Below are some links regarding HSPs and medication sensitivity.  Obviously I don't know if you're a HSP or not but reading about the nervous system and medication might have some useful insights.  

https://www.psychologytoday.com/us/blog/the-empaths-survival-guide/201805/the-effect-medication-sensitive-people

https://publicism.info/self_help/highly/10.html

Also, emotional trauma causes physical changes in the body that also cause the nervous system to be dsyregulated.  People often think of PTSD as a "mental" issue but it involves the whole body.  As with HSPs, there also doesn't seem to be any research on emotional trauma and POTS.  Whether it's POTS, PTSD, or HSPs, the self-care seems to all be very similar in terms of calming down the nervous system (e.g. yoga, exercise, meditation, acupuncture, cognitive restructuring, healing diet, avoiding alcohol).   

[judyinthesky]

@Beachlover what you say about trauma sounds very logical. Thank you!! I feel like that, like my whole body has changed after this physical trauma and the hyperthyroidism, my whole nervous system has changed (before that I was completely different). I will read up on the links, it is all sort of what I was looking for. I do all those things already, and have done before my incident, apart from the cognitive restructuring - have to check that out. I do not drink, do not drink coffee, eat bland and healthy usually.

I have not directly been a hypersensitive person.  Can one become one by trauma? I guess so. 

The issue is that I cannot identify any real triggers that are bothering me so I could do some proper self-care. I have tried two therapies and none of them have changed anything, because the feeling that my nervous system is different is constant. They have, most likely, been distracting (and distraction is the only thing that keeps stuff to a minimum, however, of course, that does not change the state of my nervous system).

The medication I have tried gives me so bad side effects. Of course I will try some more.

If there is anyone out there that feels similariliy stuck, let me know

[judyinthesky]

Also I wonder why are some dysautonomia people so sensitive to medication that they need less? Also hypersensitivity but more physical?

[Pistol]

@judyinthesky this article touches on many of your questions: 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/

They specifically mention IBS and medication hypersensitivity.  And yes - as far as I have researched trauma of ANY kind ( even hormonal dysruptions such thyroidectomy or surgery in general ) can cause dysautonomia. Remember - dysautonomia is an umbrella term, you do not have to have POTS to have an autonomic imbalance. And medication sensitivity in dysautonomia is often caused because the ANS is not balanced and therefore reacts inappropriately to even the mildest stimuli ( even medications ).  Autonomic function testing can often pinpoint the mechanism of a particular autonomic dysfunction. .this article explains this: 

https://answersdrive.com/what-is-a-autonomic-function-test-7621478

Gastrointestinal problems are very common in dysautonomia. I hope this information is helpful to you. Best wishes!

 

 

 

 

 

[judyinthesky]

thank you @Pistol. Yes, that is what I was thinking and wondering, whether it is more an umbrella term or comes with distinct categories. The link mentions gastrointestinal tests - what kind of tests, does anyone know, would this be?

Thinking about the broader perspective explains a few things. You know I definitely sweat too much, but only on the hands, so this always seemed interesting to me. I have this theory that bodies are more complex than the categories...

This makes a lot of sense to me, thank you! I was asking here because dysautonomia people are the only ones I have heard of with similar hypersensitivity.

Now what would this mean, you think, for my medication sensititivy? Just take FAR less of all (what I would do), or try to make me tolerate normal doses by other drugs (what most of my docs would suggest).

Thanks so much about the links!

[Pistol]

@judyinthesky I am severely medication sensitive due to POTS, which has made finding the right med difficult. I am under the care of wonderful doctors who work together to minimize my symptoms. Whenever a new med gets introduced they start half the lowest dose - or even the pediatric dose first. Then - depending on my tolerance - they gradually increase. Sometimes this ended up bad ( I thought I was dying on a minimal dose of Clonidine, Benadryl puts me into a coma and any OTC cold medicines drive my heart berserk ). I am blessed to be treated by an experienced autonomic specialist that completely understands my illness and therefore was willing to try different meds on me. I am now on 11 meds for POTS. Some are half the lowest dose, some are the maximum dose ( my beta blocker for example ). ---- Unfortunately treatment of dysautonomic conditions is often hit-and-miss and we have to be brave and try new meds, even if we do not end up tolerating them and they have to be stopped. It is frustrating to both patient and physician and both have to be patient. Also - recently someone posted that there is a test for medication tolerance that can tell which meds not to take, but I do not know about this test.  It might be worth asking your doctor about it. 

[Mistri_The_Squirrel]

3 hours ago, Pistol said:

Also - recently someone posted that there is a test for medication tolerance that can tell which meds not to take, but I do not know about this test.  It might be worth asking your doctor about it. 

@judyinthesky  It is called GeneSight, if you want to Google it and check out the website.  Not sure if I'm allowed to post a direct link to the site or not.

[judyinthesky]

Thanks so much guys! 

As I understand it @Pistol, you do get all the normal effects that would be expected from medication on the super low doses? Because that is what happened to me!

I wonder whether I should go back to my neurologist before proceeding with the psychiatrist. To me this feels like a double issue in these areas - and of course one does not help the other, as we know.

But how it feels to me is more like an API from the physical (that is not only the nervous system, but that is part of it, and the fact that I have also Burning Mouth Syndrome and IBS is a hint), to the mental, if that makes sense.

[judyinthesky]

PS: This thread has been more informative than any doctors date I had so far, almost

[Pistol]

14 minutes ago, judyinthesky said:

PS: This thread has been more informative than any doctors date I had so far, almost

I am glad you found answers here. I have come to realize that talking to Others that go through the same thing can be more rewarding than the theories and opinions of physicians that are not even sure what it is you have!

[judyinthesky]

Yes indeed.

I am interested in something: do people with the same hypersensitivity issue get all side effects and effects, just on lower dosage, or mostly side effects? I know it is hard to generalize but just interested... I sometimes do not know, as a tendency I also get all the effects that would be expected on higher dosages... Hm!

[RichGotsPots]

Not a lot of people realize that about 99% of out digestive tract has a 2nd autonomic nervous system completely separate from the rest of the body. So someone can have Gastroparesis or intestinal motility problems without having any other form of Dysautonomia. If you join the some groups on Facebook for it you see it is actually pretty common. For POTS I believe about 25% have different levels of gastroparesis (Too slow stomach motility) And about 15% have dumping syndrome (which is too fast motility). So that’s about 40% but not 100%.

[Guest KiminOrlando]

9 hours ago, RichGotsPots said:

Not a lot of people realize that about 99% of out digestive tract has a 2nd autonomic nervous system completely separate from the rest of the body.

Is this what is known as the Enteric Nervous System?

[Guest KiminOrlando]

On 1/14/2020 at 7:07 PM, Mistri_The_Squirrel said:

@judyinthesky  It is called GeneSight, if you want to Google it and check out the website.  Not sure if I'm allowed to post a direct link to the site or not.

I looked this up on their website. It says it is for psychotropic meds. Does it do more than that? I keep randomly getting rashes but the Allergy & Immunology doctor doesn't think it is a true allergy. I am looking for a test that could identify a broad list of meds or triggers.

[Mistri_The_Squirrel]

On 6/11/2020 at 2:17 PM, KiminOrlando said:

I looked this up on their website. It says it is for psychotropic meds. Does it do more than that? I keep randomly getting rashes but the Allergy & Immunology doctor doesn't think it is a true allergy. I am looking for a test that could identify a broad list of meds or triggers.

@KiminOrlando  To my knowledge it is just for psychotropic meds. 

I'm not aware of a test that will identify a broad range of possible triggers.  Doctors I've seen have not been terribly helpful, so I'm eliminating things from my diet to see what I may be sensitive to.  I've discovered that chocolate causes a lot of inflammation for me, and now I'm cutting out gluten to see if that helps.  I don't tend to get rashes, but I do have pain in my body.  I also discovered by accident that my depression improves when I have less inflammation.  (I had to take Aleve for a few weeks and felt better.  Then went off the Aleve and my depression went back to being pretty bad.)  So now I am trying to identify what things cause inflammation in my body.

[toomanyproblems]

On 6/11/2020 at 4:46 AM, RichGotsPots said:

Not a lot of people realize that about 99% of out digestive tract has a 2nd autonomic nervous system completely separate from the rest of the body. So someone can have Gastroparesis or intestinal motility problems without having any other form of Dysautonomia. If you join the some groups on Facebook for it you see it is actually pretty common. For POTS I believe about 25% have different levels of gastroparesis (Too slow stomach motility) And about 15% have dumping syndrome (which is too fast motility). So that’s about 40% but not 100%.

Or you can have both. Winter of 2019 I had a very bad spell of a couple of weeks where my BP, which can trend from high to low and back in days' time was swinging from high to low within a day, and the highs and lows were more extreme, especially the lows (one recorded BP of 52/40). I was passing out a lot. I was also having extreme issues with controlling internal body temp -- fluctuating between uncontrollable hot flashes and sweating to freezing cold in a cycle at least every hour and at its worst, every 20 minutes. I had big cool packs and a heated blanket on my bed to combat these problems but this happened night and day and I couldn't sleep. I was exhausted. As for the gut, I've been formally diagnosed with fairly bad gastroparesis since early 2016 but I've had it longer. The abnormal EGG and gastric emptying were well documented in 2016. However,  during this time in 2019 I would swing from symptoms of delayed emptying to dumping. I lost ten lbs in ten days and I'm normal weight. I came to view this period as an increased lack of buffer of my ANS, allowing more than my normal swings from lack of buffering.

I eventually came out of it back to my normal ANS problems.  But I have since randomly experienced the dumping on occasion peppered in with my normal gastroparesis symptoms. I sometimes read a gastroparesis forum where some people describe having both slow and too fast motility.

I have hyperPOTS by BP definition BTW.