Gastroparesis POTS CFS And Mirtazapine

[sb4]

Hey guys,

I have been struggling with the above for around 5yrs now and have tried almost everything but have been getting worse. I got really bad recently and was prescribed Mirtazapine, this has helped my POTS noticably and my Apiatiate /gastroparesis is also quite/ improved (though still present). I am wondering if you can help me to determine why?

I know it blocks the Glyciine part of the alpha 2 adrenergic receptor. This would lead to more nor-epinephrine, dopamine, and serotonin however less would be getting activated in the brain, right?

So this would mean more serotonin in the gut which could help with motility.

Also since I think I have big problems with excess adrenaline (hyperadrenegic pots) blocking a2 receptor could also potentially help calm my brain down and put it in a rest and digest state (I am also taking propanolol)?

Anything I am missing here? Any other theories?

Thanks, Sean.

 

[kangaSue]

Mirtazapine is just one of the many antidepressants that can help with gastroparesis when used at low dose. When used at the full dose as for depression, these agents can inhibit gastric emptying. Many antidepressants are similarly effective for POTS but I'm not familiar with the doses used.
https://dysautonomiaconnection.org/about-dysautonomia/what-is-pots/

POTS and gastroparesis together can be an antibody related thing, Autoimmune Autonomic Ganglionopathy. Unpublished data out of Mayo suggests 25% of those with POTS have pathogenic alpha3 nicotonic acetylcholine antibodies.

Fatigue is not usually a symptom with that but there is the odd case around of people having CFS and AAG together. Sjogren's Syndrome, which does feature chronic fatigue, is more common to occur along with an AAG comorbidity and there is a smattering of people who turn out to have Sjogren's rather than CFS.

 

[sb4]

Hi KangaSue, thanks for the response.

Mirtazapine is just one of the many antidepressants that can help with gastroparesis when used at low dose. When used at the full dose as for depression, these agents can inhibit gastric emptying. Many antidepressants are similarly effective for POTS but I'm not familiar with the doses used.https://dysautonomiaconnection.org/about-dysautonomia/what-is-pots/

https://dysautonomiaconnection.org/about-dysautonomia/what-is-pots/

Could you explain more about how the antidepressants help gastroparesis? This particular one has the side effect of wieght gain. I am wondering if it is by helping POTS it improves paresis or by some other mechanism.

POTS and gastroparesis together can be an antibody related thing, Autoimmune Autonomic Ganglionopathy. Unpublished data out of Mayo suggests 25% of those with POTS have pathogenic alpha3 nicotonic acetylcholine antibodies.

Very interesting. I will see about getting tested for this. I was under the impression that the dry mouth was caused from excess sympathetic hormones (adreneline) and poor parasympathetic (acetylcholine). So it could be explained by an anti body or just an overproduction of epinephrine. I have taken nicotine gums in the past but I haven't seen much benefit from dry mouth. Would the antibodies stop nicotine also from activating the receptor?

Fatigue is not usually a symptom with that but there is the odd case around of people having CFS and AAG together. Sjogren's Syndrome, which does feature chronic fatigue, is more common to occur along with an AAG comorbidity and there is a smattering of people who turn out to have Sjogren's rather than CFS.

I have fatigue but not the delayed onset stuff. I think my fatigue could be from dysautonomia and thyroid...

 

[kangaSue]

Could you explain more about how the antidepressants help gastroparesis?

I think it's the same mechanism involved for improving symptoms in both POTS and Gastroparesis.
http://www.digestivedistress.com/antidepressants

I will see about getting tested for this.

Not too many places test for alpha3 nicotonic acetylcholine antibodies (a3-nAChR Ab), it's currently only done well in the U.K. (Oxford University Hospital) and U.S.A. (Mayo, Athena Diagnostics (a division of Quest Labs) or the research lab of Dr Vernino at the University of Texas, Southwestern Medical Center in Dallas)

There is conflicting info around concerning having POTS with AAG but you get some insight into AAG from this webchat http://www.dysautonomiainternational.org/pdf/AAG_Webchat.pdf

I was under the impression that the dry mouth was caused from excess sympathetic hormones (adreneline) and poor parasympathetic (acetylcholine)

It can be a sign of sudomotor dysfunction, found in a variety of autoimmune diseases (including Sjogren's and AAG) or it could be as simple as a zinc deficiency.

Would the antibodies stop nicotine also from activating the receptor?

That is how I understand it to work, nicotine is an agonist but doesn't activate the receptor in the presence of the antibody. Mestinon helps sometimes, it stops the premature breakdown of acetylcholine.

 

[sb4]

I think it's the same mechanism involved for improving symptoms in both POTS and Gastroparesis.
http://www.digestivedistress.com/antidepressants

Not too many places test for alpha3 nicotonic acetylcholine antibodies (a3-nAChR Ab), it's currently only done well in the U.K. (Oxford University Hospital) and U.S.A. (Mayo, Athena Diagnostics (a division of Quest Labs) or the research lab of Dr Vernino at the University of Texas, Southwestern Medical Center in Dallas)

There is conflicting info around concerning having POTS with AAG but you get some insight into AAG from this webchat http://www.dysautonomiainternational.org/pdf/AAG_Webchat.pdf

It can be a sign of sudomotor dysfunction, found in a variety of autoimmune diseases (including Sjogren's and AAG) or it could be as simple as a zinc deficiency.

That is how I understand it to work, nicotine is an agonist but doesn't activate the receptor in the presence of the antibody. Mestinon helps sometimes, it stops the premature breakdown of acetylcholine.

Thanks for the detailed response.

Do you know of any way you can simulate the SNRI's through OTC stuff?

 

[kangaSue]

Do you know of any way you can simulate the SNRI's through OTC stuff?

Nothing that I'm familiar with. There might be something on this site http://www.raysahelian.com/depression.html

 

[sb4]

After being on mirtazapine for about 2 weeks I have started to get really bad back pain in the middle of the night, the kind that keeps you awake for hours. I have tried halving the dose but no beuno.

I have had large benefits from this drug so would not like to stop.

Any idea what mechanism causes this back ache and how to reverse it?

 

[kangaSue]

Any idea what mechanism causes this back ache and how to reverse it?

One of life's little mysteries I'm afraid but you're in the 2% minority that report back pain as a symptom with mirtazapine and the only cure is to stop the med.

As you had large benefit from it, it would be worth trying other antidepressants to see if you can find one with a better fit for you as there is a high rate of variability between different people of what they do or don't tolerate with this class of drug.

 

[godlovesatrier]

@sb4 I've got gastroparesis now too from covid. In fact I think my mild gastroparesis mostly started after my first very mild covid infection. Did you find anything that worked do you still take mirtazapine?

Does anyone know if the low dose sides wear off? I am like a zombie on 15mg, 7.5mg is better but still major next day hangover/brainfog.

 

[sb4]

@godlovesatrier
I quit mirtazipine around 2 years ago. It stiumulates the sympathetic nervous system so contributed to the tired but wired feeling, gave me constant nightmares, and masked my depression. Of course the sympathetic activation helped with POTS but it wasn't worth it for me in the end unfortunately. That said I was on it for around 5 years.

I took it at night. For the first month or so it knocked me out within 30mins of taking it however my body adapted.

As for the gastroparesis its tricky. Carbs generally make my pots worse (insulin resistance?) so I have mainly been eating fat and protein but that makes gastroparesis worse resulting in poor sleep from feeling sick.

Recently I have been having some limited success with the approach of high carb, low fat, low protein. When I eat this way the usual spike in POTS symptoms from a carb meal is much lower. There is a whole theory behind why HCLFLP might lead to less insulin resistance which in my experience there is some merit to.

Anyway carbs are much easier on gastroparesis symptoms for me such that it reduces it to a minor issue. If this will work long term remains to be seen.

As for the nicotine, again I was on and off it for over 5 years until last year when I discovered it and bromocriptine were greatly contributing to my neck pain headaches.

The problem with nicotine is the rebound effect. I would get 20 mins or so of feeling good and focused were I could get something done followed by an hour + of feeling considerably shitter and more POTSy than baseline. It generally wasn't worth it for me but I guess I was addicted. I couldn't bring myself to do productive things without it. Everytime I would set up to do some programming or whatever I would need some nicotine gum like a pavlov response.

I will say it would work wonders if you didn't have the negative effects which some people appear not to. The you actually want to work just for the nicotine buzz. Plus the nicotine helps you focus on your work. Kind of a win win.

I remember reading nicotine increase neurinflammation via a rebound effect. I speculated that was causing more brain stem cervical spine issues in me leading to the neck pain and headache problems.

All that said its probably worth a try for both mirtazipine and nicotine as long as you are vigilant for these effects and ready to stop as soon as the negatives start outwieghing the positives.

 

[godlovesatrier]

Hey,

Nicotine was so stimulating for me. I took it for a week and god I just got worse. It definitely reactivated a ton of viruses. I recovered but I felt very bad. Reactivation of viruses is a real issue for me. There must be a reason because there aren't actually that many people on this forum who seem to suffer from that particular flavour of problems.

Mirtazapine I need to take for longer. I also think low doses 7.5mg purely to help sleep are all that's worthit.

Lactoferrin is giving me mild insomnia but nothing severe yet. I think I need to switch to aspirin and lower doses of lactoferrin.

But I was reading a post by Claire Taylor who was saying ME patients without pots have actually likely got a very mild form of pots which doesn't involve heart rate issues. Basically she said they can be treated the same way. So yeah I need to try mirtazapine properly.

Thanks for the long reply and really sorry you're still struggling. You've tried do many things!

Btw Dr Claire Taylor is a new UK Dr with an ME and LC clinic. £300 for the first appointment. But totally worth it if you want to try more meds. She specialises in neuroscience so worth seeing her if you can .

 

[sb4]

I think nicotine lowers BP or something cause I remember a few times were I overdid it I felt poisoned, I had to lay down flat, was super dizzy, and felt really off.

Yeah I only every did 7.5mg of Mirtazipine (half a tablet). Think it would have been much harder to come off had I taken the doses the doctors wanted me to take.

I actually feel like I'm having some success with lactoferrin and glynac (glycine + NAC). Seems to reduce POTS symptoms.

My current theory of whats wrong with me is inflammation in the blood / endothelial cells causing poor blood flow via vasodialation, increased viscosity, leakage, immune cells, etc. This causes my body to compensate by a sympathetic response to narrow blood vessels, and increase heart rate / force to get the blood flowing.

If this is the case then I guess my glutathione could be low. I have a organic acids test that suggests this. So glynac should help there. Lactoferrin is supposed to modulate the immune system so that should help inflammation in the blood also.

I am sorry to hear you've gotten worse but I think / hope it will be temporary.

£300 is not bad for an appointment. The thing is I can get most drugs from online pharmacies so its generally cheaper for me to just order drugs myself.

 

[godlovesatrier]

Yeah I'd have to check my diary but the nicotine was very over stimulating in the end. I can't quite remember all my symptoms tho.

Glycine was kind of fundamentally important for me all I know is that pre COVID vaccines I was in a near state of remission on Josh's old protocol. But every single time I get a vaccine the whole gamut of shit reactivates. But having COVID without a booster is significantly worse and far more damaging. It's been maybe four or five times as damaging I'd say. It's the world we live in now I think. I feel like constant boosters leave me at a distinct disadvantage.

Even with acute symptoms of inflammation low symptoms are definitely a super common factor. If your cortisol is low as well you might want to see if low dose hydrocortisone helps. Alternatives would be DHEA which is a strong anti inflammatory as well.

I take l actyle glutathione too. 100mg a day. It has a potent effect initially reactivating ebv for the first few days then it disappears and I only get the benefits. Jarrow brand and it's much cheaper than liposomal. I haven't found nac to be nearly enough even with pre cursors to glutathione.

Tbh if COVID was a one off and there were no boosters im confident I'd recover. The issue I have today is that boosters and essentially annual COVID infections make it impossible to ever fully recover. Hopefully these new super duper vaccines there working on don't make us all severe cause that would suck.

Yes but you may not get the same help. What I mean is I haven't got much of a clue what else I can try. I have asthma so finding drugs I can take is a total nightmare. Even aspirin gives me a bit of asthma. I took some tonight and feel physically loads better. I also took my vivomixx and that helps lower inflammation loads too. Together with the lactoferrin seems like a good set.

Life extension reishi also very important. I've woken up post COVID at night having panic attacks or very inflamed and I take 4 reishi caps (maximum dose) and drift off into a very very nice slumber. Inflammation just makes everything worse.

What meds will you try next for pots? Did you ever try proponolol? Causes asthma so I can't take it.

 

[sb4]

I have tried DHEA in the past without much success. I am tempted to try prednisone at some point as I already have some for my cat. He has allergy problems.

I might try some of that s-acetyl l-glutathione.

You seem to have gotten real unlucky with covid. I have only had one vaccine, and only caught it once with no long term effects.

Funnily enough I have just been re-prescribed propanolol. I am taking it at night as one of the issues I have is when laying down to go to bed it takes ages for my nervous system to adjust and my heart pounds out of my chest for ages afterwards. This is even worse when I get up in the middle of the night to pee.

I think propranolol is helping a little in this regard.

I'm seeing Dr Nick Gall in London and he has prescribed some more drugs for me such as retrying ivabradine. So I will be doing that in the near future.