Can IBS Symptoms Come and Go?

[MikeO]

Last couple of days i have been cramping really bad again. Very gassy and hardly can get a b/m out. I swear i worked on this over the last couple of months and my symptoms went away. I did deviate from my normal diet that i know works and have been grazing on Chilli the last few days. Also today my bp's dropped considerably at rehab today. the high was 128 and the low was 108 normally i hang out in the 150 to 160's and have spikes well into the 190's.

Wondering if my NS went into a different mode? I also noticed that neck has a better range of motion so maybe a pinched nerve giving a problem?

[Pistol]

@MikeO - I have IBS from HPOTS and yes, it does come and go for me. Something as simple as skipping a meal, overeating or an acidic meal can set it off. I also have bad GERD in addition to the IBS. I have to follow a diet of certain foods at certain times in addition to medication in order to avoid problems. If the POTS flares usually the IBS does too. 

[MikeO]

Thanks @Pistol I hope i am not going into some type of flare. Starting to think if the weather has an effect. It did turn pretty cold yesterday and today we are having scattered flurries.

[MikeO]

Well tracked my heart rates since i posted this question and they are consistently 110 bpm to 119 bpm while upright, normal is 80 to 85. I suspect that my sympathetic NS is being dominant for whatever reason. My bp's also went down more. low yesterday afternoon was 79/64 (will get me lightheaded) this morning so far has only been 121/84.

This is really frustrating.

[cmep37]

@MikeO I think I've got my IBS beaten into submission and suddenly it starts up again.  Flares definitely set it off and like you I tend more to IBS-C than IBS-D although when it's really bad I can be both in a single day! When I am really bradycardic at night it barely bothers me, when the bradycardia isn't so bad it's back in full force so I definitely think my IBS is linked to the sympathetic NS being dominant.  Have you had any med changes since your 24 hr BP monitor - sometimes that can set off IBS?

[MikeO]

9 minutes ago, cmep37 said:

Have you had any med changes since your 24 hr BP monitor

No not yet. I should hear from the Cardiology office today or tomorrow. Seeing my bp's came way down i am a little worried that if they up the meds i will end having syncope problems again. Wonder if i should ask about having some type of flexibility with meds so that i can adapt to the big swings that i get with my bp's?

 

16 minutes ago, cmep37 said:

I definitely think my IBS is linked to the sympathetic NS being dominant

I agree 100%

[Pistol]

2 hours ago, MikeO said:

Wonder if i should ask about having some type of flexibility with meds so that i can adapt to the big swings that i get with my bp's?

@MikeO - since my BP's fluctuate so badly at times I have an order for additional Carvelidol to be taken if the BP goes up. Also - if my BP consistently runs low I only take 1/2 of my Carvelidol. But THIS IS ONLY DONE WITH MY DOC'S APPROVAL. I am not suggesting that anyone should do this on their own, since messing with our dosages can easily backfire. 

[MikeO]

8 minutes ago, Pistol said:

@MikeO - since my BP's fluctuate so badly at times I have an order for additional Carvelidol to be taken if the BP goes up. Also - if my BP consistently runs low I only take 1/2 of my Carvelidol. But THIS IS ONLY DONE WITH MY DOC'S APPROVAL. I am not suggesting that anyone should do this on their own, since messing with our dosages can easily backfire. 

@PistolThanks for sharing the info. Glad you have a way to deal with the swings in BP. I feel better that i am not alone in this. I will for sure bring up the subject with the Cardiologist.

[MikeO]

@cmep37I ended up taking a couple of doses of pyridostigmine yesterday it did get things moving again. What a relief!

[MikeO]

Well brought the IBS stuff up with Cardiology. I am really running out of drugs to try. So we are still going forward with the uptick in dosage of Amlodipine i need to get my bp's in check. But they are on board with using  pyridostigmine to help out with the bowel issues. So i was instructed to reach out to Tania for help with getting the dosage right.

While no one came out and said it i suspect a SNS activation and if what i have read correctly a CCB can do this. I have seen this with other drugs as well when i have a tacky run my digestive system shuts down. The pyridostigmine acts on the PNS and is probably why it is also considered a strong laxative.

I doubt i have physical bowel issue as i can be totally normal at times i just suspect my issues are drug induced. 

 

[Pistol]

@MikeO - in my case I did not really respond that well to the Amlodipine and I was switched to Diltiazem, which worked much better for me. I also was on Pyridostigmine for a while, I don;t remember why it was stopped. I think it just didn't help. My sister, who also has autonomic dysfunction with high BP, saw an improvement in her bowel habits while on it. But in the end she did not tolerate the CCB and now is off the CCB and the Pyridostigmine. It all boils down to having to try whatever med there is to try - we cannot tell if something works without trying. And since it often is impossible to pinpoint the exact mechanism behind our POTS symptoms determining our response to medication is how we can determine the cause of the dysautonomia. 

I know the process of finding the right medication is frustrating, for both us and the doctors. but it is an important process, and in my case I have found the right meds, after many years of trying. So hang in there, Mike! You have to sift through a lot of dirt to find the gold nugget!

[MikeO]

On 11/6/2021 at 3:45 AM, Pistol said:

I also was on Pyridostigmine for a while, I don;t remember why it was stopped. I think it just didn't help.

We did stop the Pyridostigmine back in September. We felt the measurable use of the drug was miniable outside of keeping the bowels moving and helping with fatigue. We also had concerns over the increase in blood pressures  (was the main reason for withdrawing the drug)

[Rexie]

For Mike:
Activation of the sympathetic nervous system (“fight or flight“) increases the neurotransmitters epinephrine (adrenaline) and norepinephrine (noradrenaline), and the hormone cortisol. Epinephrine increases heart rate and metabolism. Norepinephrine constricts blood vessels, increasing blood pressure. Cortisol increases glucose in the blood and suppresses the digestive system. In general, the sympathetic nervous system inhibits salivation and the activities of the stomach, intestines, and gallbladder, plus it relaxes the bladder. The sympathetic nervous system is also an important regulator of the circulation. Its activity is increased in hypertension and heart failure. Dysregulation of the cardiovascular system by the autonomic nervous system with enhanced activity of the sympathetic nervous system and reduced parasympathetic nervous system tone is among the characteristic symptoms of hypertension and cardiac failure. 

The parasympathetic nervous system (“rest and digest” and “feed and breed”) stimulates salivation, and the activities of the stomach, intestines, and gallbladder, and contracts the bladder and thus has important positive influences on digestion and defecation. When the parasympathetic nervous system is activated, it slows our heart and breathing rates, lowers blood pressure, promotes digestion, contracts smooth muscles, dilates blood vessels, and increases bodily secretions. Acetylcholine is the principal neurotransmitter of the parasympathetic nervous system. 

The balance between sympathetic and parasympathetic activity determines heart rate. Sympathetic control to the heart is via T1–T4 nerve roots, while parasympathetic control is via the vagal nerve. Sympathetic activity increases and parasympathetic activity decreases heart rate. Without input from either source, in normal people the heart will beat at approximately 70–80 beats per minute. This is due to the intrinsic firing rate of the sinoatrial node in the heart. 

Pyridostigmine is a medication used to improve muscle strength in people with myasthenia gravis by indirectly increasing the concentration of acetylcholine at the neuromuscular junction and promoting increased cholinergic nicotinic receptor activation. This results in increased cardiovagal tone, helping to reduce heart rate. One common side effect of using Pyridostigmine is diarrhea. 

In patients with orthostatic hypotension, pyridostigmine has improved orthostatic tolerance and blood pressure. The mechanism of action is believed to be the augmentation of autonomic ganglionic transmission. Theoretically, pyridostigmine has a lower risk of supine hypertension than sympathomimetic or volume-expanding agents by potentiating ganglionic transmission selectively during orthostatic stress. Pyridostigmine has no unwanted CNS effects; its quaternary ammonium molecular structure prevents it from readily crossing the blood brain barrier, relegating its effects on acetylcholinesterase to outside the central nervous system. 

Amlodipine (a dihydropyridine) acts by blocking the influx of calcium ions into vascular smooth muscle and cardiac muscle cells during membrane depolarization. This action causes relaxation of vascular and arterial smooth muscle cells, resulting in arterial vasodilation and a decrease in cardiac work and oxygen consumption. Thus, its action does not involve the CNS in most cases. Some mention has been made that calcium channel blockers may cause constipation. There have been some reports that in people with hypertension treated with long-acting dihydropyridines and presumably little activation of the arterial baroreflex, sympathetic activity (as assessed by plasma norepinephrine) was reduced. However, other studies reported increases in CNS activity (as assessed by plasma norepinephrine or microneurography). Still other studies that looked at muscle sympathetic nerve activity (MSA) by microneurography found that Amlodipine does not change MSA. The best review and advice about taking Amlodipine in spite of a possible marginal increases/decreases in CNS activity is found in the first reference (Toal et al) below. 

All of the above is very simplistic in explanation. In reality, all our systems experience many other influencing factors, both internal and external, as well as enjoying cross-linkage with one another. Side effects of medications may also come into play and in your case may be balancing one another out (Amlodipine-Pyridostigmine) or not. Finding things that work for you and your case is as you are experiencing – a try and see approach, as pistol has reminded us. You can increase acetylcholine through diet and herbs but most folks prefer to just take a pill. 

A simple way to stimulate parasympathetic activation (known as the relaxation response) is to do some slow, deep breathing (10 or 20 deep sighs a day). This stimulates the vagus nerve, and the vagus nerve is one of the main stimulators of this relaxation response. Alternately, try to exercise – in normal people regular physical activity is followed by post-exercise parasympathetic activation, which, if achieved, will become more robust and efficient as time passes, improving autonomic tone. I have trouble relaxing after exercise or stimulating activities due to dysautonomia, so exercise, for me right now is a mixed bag – part good but with a lot of physical stir and often lots of pain. For greater parasympathetic activity I rely on my favorite herbs to bring me down. Another easy way to trigger the relaxation response (parasympathetic activation) is to listen to music (or play music or sing) and arouse a sympathetic response which is followed by an increase in parasympathetic activity after the music stops. Stress and pharmaceutical-induced sympathetic excitation do not count – they do not lead to substantial increases in parasympathetic activity after sympathetic arousal. 

I feel for you, Mike, as I struggle to understand my own unrelated dysautonomia deal. Chin up! 

Long-acting dihydropyridine calcium-channel blockers and sympathetic nervous system activity in hypertension: A literature review comparing amlodipine and nifedipine GITS, Corey B. Toal, Peter A. Meredith & Henry L. Elliott, Blood Pressure, Vol. 21, Issue sup1, pp. 3-10; 2012
https://www.tandfonline.com/doi/full/10.3109/08037051.2012.690615 

Sinus Tachycardias: Inappropriate Sinus Tachycardia and Postural Tachycardia Syndrome, B.H. Shaw et al, In: Encyclopedia of Cardiovascular Research and Medicine, Ramachandran S. Vasan and Douglas B. Sawyer (Editors); Elsevier Inc.; 2018

Difference Between Sympathetic And Parasympathetic, BYJU’S internet, 2021 
https://byjus.com/biology/difference-between-sympathetic-and-parasympathetic/ 

Dysregulation of the Renin-Angiotensin System and the Vasopressinergic System Interactions in Cardiovascular Disorders, Ewa Szczepanska-Sadowska, Katarzyna Czarzasta & Agnieszka Cudnoch-Jedrzejewska, Current Hypertension Reports, Vol. 20, Article number:19; 2018
https://link.springer.com/article/10.1007/s11906-018-0823-9 

Pyridostigmine, Tim Anderson, Carey N. Pope, In: Reference Module in Biomedical Sciences, Elsevier; 2017 

Cardiovascular fitness training, Lisa Harvey B, AppSc, GradDipAppSc(ExSpSc), MAppSc, PhD, In: Management of Spinal Cord Injuries, 2008 

Calcium channel blockers, Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/high-blood-pressure/in-depth/calcium-channel-blockers/art-20047605 

Effects of Chronic Calcium Channel Blockade on Sympathetic Nerve Activity in Hypertension, Christian Binggeli, Roberto Corti, Isabella Sudano, Thomas F. Luscher, and Georg Noll, Hypertension, Vol. 39, No. 4, pp. 892–896; 2002
https://www.ahajournals.org/doi/full/10.1161/01.HYP.0000013264.41234.24   

Mechanisms of Music Impact: Autonomic Tone and the Physical Activity Roadmap to Advancing Understanding and Evidence-Based Policy, J. Matt McCrary, and Eckart Altenmüller, Frontiers in Psychology, Vol. 12; 2021 
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8429896/ 

David Rakel, M.D., University of Wisconsin, December 23, 2008, ABC News: 
https://abcnews.go.com/Health/AlternativeMedicine/relaxation-response-ease-stress/story?id=9411762 

[Rexie]

@ pistol & cmep37

Consistent with an increased activity of the sympathetic nervous system, a decreased activity of the parasympathetic nervous system can occur during the course of chronic inflammatory systemic diseases such as IBD. The sympathetic nervous system and the parasympathetic nervous system are often working in opposite directions.  In chronic inflammatory systemic diseases, the sympathetic nervous system is switched on at the expense of the parasympathetic nervous system, which is linked to reduced gastrointestinal activity, decreased nutrient uptake, diminished glucose uptake into the liver, and a more proinflammatory situation due to the loss of the cholinergic anti-inflammatory influence. 

Ch. 5 - Origin of Typical Disease Sequelae, Rainer H. Straub, In: The Origin of Chronic Inflammatory Systemic Diseases and their Sequelae, pp. 173-235, 2015

In POTS patients, Pyridostigmine has been shown to reduce tachycardia (a higher than usual heart rate) and produce short-term improvement in symptoms. Cholinergic side effects are common (severe cramps, diarrhea, nausea, vomiting, increased salivation, and miosis) and may be dose-limiting. Unfortunately, these significant gastrointestinal side effects limit the efficacy of this medication in about 20% of POTS patients (Toal et al). 

Serotonin and its big influence on digestive health is often overlooked. Enterochromaffin cells in the intestines and colon synthesize 95% of the body’s serotonin and release serotonin in response to mechanical or chemical stimulation where it effects of gut motility, secretion, and visceral sensation. Abnormal regulation of serotonin occurs in gastrointestinal disorders such as  inflammatory bowel disease (IBD), irritable bowel syndrome (IBS), diarrhea associated with bacterial toxin induced enterocolitis, and has possible associations with celiac disease, diverticular disease and colorectal cancer where serotonin may represent a key player in the pathogenesis of intestinal inflammation due to abnormal serotonin signaling. 

Upregulation of mucosal serotonin has been hypothesized to underlie the development of postinfectious bowel disorders where inflammation-induced upregulation of serontin signaling persists after inflammation has decreased. In these cases, microbe to enterochromaffin cell signaling may result in persistent symptoms of bowel dysfunction in humans, such as in post infectious irritable bowel syndrome (IBS). 

Serotonin is not directly connected to CNS activity since it cannot cross the blood brain barrier. However, serotonin released from enterochromaffin cells can potentially participate in brain-gut communication by modulating vagal afferent activity and inflammatory responses in the gut. 

Mechanosensory Signaling in Enterochromaffin Cells and 5-HT Release: Potential Implications for Gut Inflammation, Andromeda Linan-Rico et al, Front. Neurosci., 2016
https://www.frontiersin.org/articles/10.3389/fnins.2016.00564/full   

The Microbiome, Michela Bistoletti et al, In: Progress in Molecular Biology and Translational Science, 2020
https://www.sciencedirect.com/topics/neuroscience/enterochromaffin-cell 
 

[cmep37]

@Rexie thank you - I would like to try Pyridostigmine but my cardiologist says he doesn't know enough about how it works to prescribe it!  I will print some of this information out and ask him if he will read it - he has only a few POTS patients, none of whom are as severely affected as me and I feel he has given up trying to treat me but there are no other POTS doctors local to me that I haven't already seen or that are any better!   

19 hours ago, Rexie said:

Another easy way to trigger the relaxation response (parasympathetic activation) is to listen to music (or play music or sing) and arouse a sympathetic response which is followed by an increase in parasympathetic activity after the music stops

I found this very interesting.  I never really listen to music any more as it makes me feel very jittery and anxious.  Classical or easy listening type stuff is just as bad as more upbeat music and the jitteriness lasts for at least a couple of hours.  From what you say it must trigger an exaggerated sympathetic response in me. Oddly if I sing I don't get this anxious feeling but I'm a really awful singer so my family would not be impressed by me doing this every day!

[Rexie]

cmep37 I've been selective with my music since encephalitis 9 years ago and now even more so with dysautonomia. Sometimes I just have to jump up and turn off music and sound that makes me feel icky. While I love old rock sometimes, I much prefer modern electronic progessive tonal music now - pure sounds that gently engage the mind with simple, repetitive musical themes that move me forward. They are generally geared to heart rate and activate specific brain waves (like brain entrainment strives to do). A few weeks ago I recorded a 70 minute tune set of Ben Bohmer's works and liked it so much I recorded another 90 minute set. His works are energizing but mellow and seem to have the right balance for me. I have pleasantly flowed right along all morning and into the afternoon listening to Ben Bohmer while doing chores, paperwork, taking photos, interacting with clients, etc. My cats, kittens, and even the dog who can be picky about music like Ben Bohmer and get happily energized.  I've shared Ben's works with others of all ages and all like his music, too. If you explore you might find musical offerings that do it for you. Happy listening! 

(I can't sing right to save my life and my animals look at me like I'm crazy if I do break out into song)

[MikeO]

23 hours ago, cmep37 said:

I would like to try Pyridostigmine but my cardiologist says he doesn't know enough about how it works to prescribe it!

 

On 11/7/2021 at 11:47 AM, Rexie said:

Cholinergic side effects are common (severe cramps, diarrhea, nausea, vomiting, increased salivation, and miosis) and may be dose-limiting.

@cmep37Pyridostigmine IMO is worth trying or at least doing a two week trial. When my Dr prescribed it she had to look at what drugs i was taking to be sure there were not interactions that needed to be taking into account. Other concern was keeping an eye on my hr as i am on a beta-blocker. The Dr also wanted me to watch that my hr did not consistently go down to 50 bpm or below. 

I do have to say my heart rates did go down from my usual mid 80's to mid 90's to the mid 70's to mid 60's and had no tachycardia flare ups.

As to side effects the diarrhea was the most noticeable but was manageable. I found that if you take pyridostigmine with food (more than just a saltine cracker) this would keep the runny portion of the bowel movements at bay. If you are in a IBS-C flare it is a wonder drug. I did also notice a more moist mouth (not drooling moist) and to be honest was a welcome affect of the drug.

Rumour is that it will help improve one's singing  

[cmep37]

4 hours ago, MikeO said:

I do have to say my heart rates did go down from my usual mid 80's to mid 90's to the mid 70's to mid 60's and had no tachycardia flare ups.

@MikeOThanks for telling me how you've found taking Pyridostigmine.  The drop in resting HR is why I'm not sure about it - although I experience significant HR rises with POTS (I average around 150BPM after 5 minutes of being upright) a few years ago I developed bradycardia in the evenings. My resting HR can drop into the low to mid 40s by 9-10pm (at this time of the evening I can meet the definition of POTS with a HR of 72BPM which is crazy!) .  If  Pyridostigmine dropped my resting HR by 10BPM like yours, I would be heading for the ER!  I had to stop Ivabradine after a month's trial for this reason - it helped the daytime tachycardia but even at the smallest dose it increased the evening bradycardia to the point where I couldn't deal with it.  I would still like to trial Pyridostigmine, if only to rule it out as something that might help - the idea of being less constipated and having less dry eye/dry mouth issues would make it a miracle drug in my book!  Mind you it would need to be a more than a miracle drug to do anything about my tone-deaf singing voice (of course I think I sound like Adele, it's just everyone else who thinks I sound like like a strangled cat)😹

[MikeO]

2 hours ago, cmep37 said:

Mind you it would need to be a more than a miracle drug to do anything about my tone-deaf singing voice (of course I think I sound like Adele, it's just everyone else who thinks I sound like like a strangled cat)😹

Oh this is funny. The  Pyridostigmine i was told not to take before bed for the same  bradycardia concerns. Upside the drug has a short half life so by the time you wind down it should be out of the system.It's Worth a trial in my book.

[MTRJ75]

Watched Dr Pace's DI2021 presentation today. Always very informative and pertinent to this discussion. She's very up on the technological advances in GI diagnostics, though she also calls IBS a trashcan diagnosis. Anyway, worth a watch/listen if you have access. 

[MikeO]

8 hours ago, MTRJ75 said:

Watched Dr Pace's DI2021 presentation today. Always very informative and pertinent to this discussion. She's very up on the technological advances in GI diagnostics, though she also calls IBS a trashcan diagnosis. Anyway, worth a watch/listen if you have access. 

I did watch Dr Laura Pace's presentation on YouTube from 2019 very informative. Do you have a link to Her latest discussion?

[MikeO]

I did find a more recent presentation by Dr Pace. She did describe IBS as a cluster of symptoms as opposed to being a diagnosis. Again very informative.

 

[MTRJ75]

I believe you have to go through DI to get a link to the conference videos from them. They are on Vimeo somewhere though if that doesn't work. 

[MTRJ75]

The newest Health Rising blog has some interesting stuff on IBS and MCAS. Will probably try to expand on that in a new post when I have more time. Some potentially large implications there: 

https://www.healthrising.org/blog/2021/11/13/mast-cell-activation-ibs-fibromyaglia-chronic-fatigue-syndrome/

Also, in Dr Pace's talk this year, she mentioned the ability to test for MCAS via biopsy during endoscopy now. 

[MikeO]

17 hours ago, MTRJ75 said:

The newest Health Rising blog has some interesting stuff on IBS and MCAS. Will probably try to expand on that in a new post when I have more time. Some potentially large implications there: 

https://www.healthrising.org/blog/2021/11/13/mast-cell-activation-ibs-fibromyaglia-chronic-fatigue-syndrome/

Also, in Dr Pace's talk this year, she mentioned the ability to test for MCAS via biopsy during endoscopy now. 

Will be interesting to see what comes down the pipe with this. I know there is a lot of Dr's out my way that don't buy into MCAS and the ones that do have really strict testing requirements that need to be done before they will even see you.

My PCP does understand or acknowledge the term "immune response"  and will prescribe a steroid when really needed.