Catecholamines, vagus-nerve issues, hypersensitivity

[judyinthesky]

Hey DINET community,

I am writing here because you guys are the group that I consider pretty knowledgeable in all things nerves, the distinction between anxiety and other stuff, and weird illnesses that take some time to be taken seriously.

I have mainly one issue: I have a gastro issue (possibly severe pancreatic insufficiency, confirmed by two GI and stool tests, waiting for more investigations). However my issue is also that my nervous system reacts extremely to the changes (whatever is going on) in my gastro system. That something more is going on is reflected in the following symptoms I have every day (they are rather stable) and ALL started 5 days after my gastro symptoms started. I would be entirely grateful if a few could lend me their brain and say what they think, and maybe there are some ideas where I could look for or what I could try to solve this mystery.

*) I am in a constant wired state and never tired. Sometimes it is related to anxiety, sometimes positive things. Like everything I experience is what I would usually experience, just supersensitive to everything.
*) Chronic shortened sleep. I wake up basically by my heart pounding, however this is not anxiety, my dreams are normal and pleasant. Same when I wake up in the morning. I don't think my heart really is pounding more, I just feel it more (classic palpitations). I also get left sided dull pain, like a throbbing, could be pancreas pain, but I get that also sometimes from sports.
*) After I eat I get the feeling of wiredness or nervouseness. This can be just after a cookie and is definitely not anxiety, it does not matter what I think.
*) I get cyclic phases of depression that last only about 1 day, maximum 2. It feels to me like my body would be compensating for the wiredness state it is constantly in. It feels very physical to me and there usually is not a trigger.
*) I have Burning Mouth Syndrome/neuropathy in mouth, which started after thyroidectomy. Same pattern here: overreaction of the nerves to something going on in gastro tract. I have not found a medication that helps against that, tried Lyrica, Clonazepam helps but I do not want to take it all the time. My thyroid levels are always weird, ft3 on the lower side and ft4 on the higher side, but that is the lesser evil I can get to (I do not deal well with additional T3, it makes me very very nervous).
*) A neurologist tested catecholamines. It showed in urin that my noradrenaline and adrenline are on the low side. The other catecholamines in normal range, apart from serum: The dopamine in urine is fine, but dopamine in serum is ten times as much as it should be.
*) My nerves are very active in the gut in general
*) This summer I was hyperthyroid and this sparked panic attacks of the atypical kind (always in my gut). After that the constantly wired state started.
*) A CT of the abdomen revealed no abnormalities.
*) No autoimmune diseases as per blood tests could be identified (tested for the classic ones).
*) I tried an SSRI (Lexapro) and Mirtazapine, 1/4 of a pill. Both lead to extreme reactions, the SSRI made me suicidal (never had that feeling before in my life), and on the Mirtazapine I felt drugged after three days of taking a tiny dose (I also got pain while urinating, more anxiety). Apart from my thyroidectomy and the hormonal adjustment period, I never had a mental health issue, I am 39 and the thyroidectomy was at 34. 

As my digestive nerves can never rest (I loose weight), this issue is going on every day. It feels like I got somehow stuck in the hyperthyroid state, but in an extreme form, and with normal heart rate and blood pressure (I am a bit more on the lower side with blood pressure).

Can it be that the nervous system gets stuck in such a fight or flight-mode? Would other low-dose antidepressants be an idea?

Anyone in a similar stuck situation?

I feel a bit like I've entered a catch 22 situation due to my gastronerves reacting to so much. Or the vagus nerve or whatever it is.

Now my thinking is, if this is all sparked by my non working pancreas, and if I cannot change that, what could be a strategy to be able to get more living quality again? It is debilitating as it is now and I had to stop working in a normal way. I basically can only work in my window times, and everything is very chaotic.

Much appreciated that you made it that far!

[Pistol]

@judyinthesky - wow, you have a lot going on, and I am so sorry you have to deal with this!!! First of all - have you ever been diagnosed with any type of dysautonomia? Here is what I noticed: 

- constant wired state and never tired, chronic shortened sleep with heart pounding and palpitations, nervousness after eating, phases of fatigue or depression - all these symptoms can occur in dysautonomia. 

- normal catecholamines, normal HR and BP .. all that does NOT sound like dysautonomia. 

- you have a lot going on between the thyroid and the pancreatic Insufficiency. Your poor body appears to be in chaos from the constant weight loss, potential nutritional deficiencies and the pain/ diarrhea etc from the EPI. My first clue would be any deficiencies. Vit B12 and Vit D3 deficiencies can cause some of the symptoms you are experiencing and are common in dysautonomia. At onset of my acute dysautonomia they both were extremely low and replenishing them has improved some of the fatigue, low energy, depression etc. If they were not already checked I would request a blood test for them as well as for iron/ ferritin ( which also can contribute to some of your symptoms and were low for me as well ). EPI causes the body to not brake down you food and therefore you cannot get the nutrition out of your food. Are you on ANY nutritional supplements? If you are loosing weight you may lack other nutrients as well, such as protein, certain fats etc. If your doctor has not already given you nutritional advice you could make an appointment with the dietician or nutritionist at you local hospital. They can really individualize a meal plan for you but will need the test results for deficiencies your may have. I saw one for gastroparesis and GERD as well as deficiencies and she was vey helpful and my symptoms improved greatly since following her advice. 

- regarding the SSRI: I am on Escitalopram ( Lexapro ) for a long time for HPOTS. Recently my specialist added Buprobion ( Wellbutrin ) and I feel soo much better! It really added a lot of spring to my step and I have a lot more energy and drive. Maybe worth asking your doc about this. 

- do you have any orthostatic symptoms, like dizziness or racing heart upon standing? That would be one clue regarding POTS. 

15 hours ago, judyinthesky said:

Now my thinking is, if this is all sparked by my non working pancreas, and if I cannot change that, what could be a strategy to be able to get more living quality again? It is debilitating as it is now and I had to stop working in a normal way. I basically can only work in my window times, and everything is very chaotic.

My thinking is that possibly with correcting any deficiencies you might feel better. Here is a link with recommendations of what you should eat with EPI 

https://www.everydayhealth.com/hs/exocrine-pancreatic-insufficiency-pictures/healthy-meals-to-manage-epi/

Last but not least - do you take medicine for the EPI and does it work? If not you may want to ask your doctor about a change in medication. The optimal effect of the medicine would be that your diarrhea, pain and weight loss improve. 

I hope there is something helpful to you in here. I truly feel for you since I know what it is like to be disabled from chronic illness. When I was unstable and had not yet found the right meds there were a few things that helped me : doing my own research, understanding my illness and symptoms, dumping doctors that were useless and sticking to the good ones. Confused or not helpful doctors will not be able to improve your condition. One clue is that they will not change medicine that is not helping as it should. Hang in there, be proactive, find other patients with EPI ( like a forum ) so you can fin out what they did to get better. Best wishes!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1😉

[judyinthesky]

Hey, thanks so much for your time and thoughts.

As for normal catecholamines... to clarify in urine adrenaline and noradrenaline are low... dopamine in serum 10x as high as normal, others in middle range.

As for Vitamin D., yes, I have problems with that due to the pancreas issue. If I take A LOT of vitamin D, I find myself slightly within the range. B12 seems okay and easier to fill up (I take those multivitamins, a lot actually, also lots of vitamin E as per doc idea). My heart is a tad slow sometimes but that might be due to the thyroid issue... my blood pressure normal to low.

I am a bit lower on iron and have thought to maybe request injections to see whether it helps... but then this fluctuates... have do do more blood test. All in all I try to optimise, but feel that a nutritional imbalance alone would not hit me so hard... of course if everything is off any nutritional balances will add to it. It seems common in pancreas insufficiency to loose weight while sometimes having normal vitamin levels, though (I know, that's ******).

I have not been diagnosed with any type of dyautonomia yet.. but the reason I post here, I guess, is to get some perspective.... I have also thought along some neuropathy... autonomic somehow... However I can do sports normally and do not notice any changes when I change my position. Due to the lower blood pressure sometimes I can get dizzy when I stand up, but not in an extreme way whatsoever.

You mean Hyperpots? Ah, that is VERY interesting that SSRI helps you there. I am a bit concerned with the antidepressants because I am so wired, my Lexapro trial was a disaster... Because of the high dopamine in serum I am a bit unsure though about Wellbutrin... I would rather think of some TCA at the moment (because I also have Burning Mouth)... but I am willig to try anything. Just seems that I am so hyper and wired... so I would start slooooooooooooow 

As for the EPI medicines... my issue is that I take lots of pancreatic enzymes (Creon), but it is very chaotic - some day it's fine, some day it's a disaster, and has been like that before the Creon. Also with the other EPI patients, it is a bit similar: They classic patients, the Creon is working for them, and they get rather tired, not hyper, like I do! It is so weird. I do not fit into any category. My depression only comes every 30th day, very physical experience, rarely a trigger, I wait it out those 2 days (even if it's horrible!). It is a bit with my Burning Mouth Syndrome: It might be an overreaction of nerves in the gastro tract, but over the top for what is going on. I feel similar with my other symptoms: an overreaction of nerves... 

That is the thing, whatever I try my body says: No, that won't work! But I think I have not tried everything yet!

 

[p8d]

My only comment as someone with hyperadregenic POTS is about the mitrazipine.  I didn’t sleep more than 3-4 hours a night for close to two years when I first got seriously ill.  I tried every sleep med, benzo, antihistamines etc and the only thing that helps me sleep is mitrazipine.  I have gone on and off it couple of times since I started it and I, too, experienced serious drug hangovers for about a week or so but I will never give it up because nothing else works and I feel much better after a decent nights sleep.  I still have lousy nights 2-3 times a week but I guess that comes with the territory.  I take a quarter of a tablet nightly.  I always have extreme reactions to meds but if I can at least try it for a week or two they sometimes decrease to tolerable levels.

[judyinthesky]

3 hours ago, p8d said:

My only comment as someone with hyperadregenic POTS is about the mitrazipine.  I didn’t sleep more than 3-4 hours a night for close to two years when I first got seriously ill.  I tried every sleep med, benzo, antihistamines etc and the only thing that helps me sleep is mitrazipine.  I have gone on and off it couple of times since I started it and I, too, experienced serious drug hangovers for about a week or so but I will never give it up because nothing else works and I feel much better after a decent nights sleep.  I still have lousy nights 2-3 times a week but I guess that comes with the territory.  I take a quarter of a tablet nightly.  I always have extreme reactions to meds but if I can at least try it for a week or two they sometimes decrease to tolerable levels.

Thank you. I was wondering whether I should give the mirtazapine another try. It was so weird, I took 1/8 of 30 mg (really!) and got very tired the first day, then on the third I got very hyper, and I had this issue that I would still wake up on it and have painful peeing sensations... I could push through a little again, one issue with the mirt is that I get so many cravings on it, and with the pancreas issue sometimes I have to go on a diet and the urge to stuff food into me is not the best, because I have to distribute my food... in small portions throughout the day... and sometimes not eat. Many say the mirt does come with this continous side effect. Maybe it would have worn off after a longer period...

As for sleeping I still woke up with it during the night, but in the morning I could lie down again and sleep more, like idling around in a sleep-wake-state... that was easier with it! Anxiety got worse during the time I tried it. I had high hopes for it too, but microdosing it again might be an option. Again, so puzzled that I was so hypersensitive as well... this is a quarter of what people usually take, that I have taken, but with full effects. Also had very weird dreams on it, but that seems to be normal.

I also say my shortened sleep is fairly constant! From the moment this all started (which was 5 days after my gastro tract changed), it always was 5-6 hours, some nights are better, some I wake up more, but it is pretty stable. (9 hours is normal for me before that)

@p8d how much do you take, if I may ask?

[p8d]

I take 1/4 tablet of a 15mg pill so a super tiny dose.  I have also had really bad fatigue from several beta blockers and other meds.  

[judyinthesky]

On 4/21/2020 at 12:07 AM, p8d said:

I take 1/4 tablet of a 15mg pill so a super tiny dose.  I have also had really bad fatigue from several beta blockers and other meds.  

Ah, that is about what was effective for me. It is rather mysterious, I have the hypersensitivity of a dysautonomia person without actually having classic dysautonomia. But I see myself in many of the issues people post here. It is hard to make doctors understand that the dosage I take does really effect me in the same way and that I do not suffer from a psychosomatic anxiety placebo effect or so.