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judyinthesky

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About judyinthesky

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  1. I think this could all make some sense, particularly with the drinking etc., because my pancreas issue certainly would contribute to dehydration... I will try that front. Any other rehydration tips and tricks? Specific products other than sports drinks?
  2. Hm, thanks. I eat already a collection of amino acids I will see whether it is in there.
  3. Ah, I am not too familiar with the autonomic testing, I went to two neurologists and they both did not consider. But it is good to know that there is that option. Yes, smaller meals seem to help me, but sometimes I just eat a little baby food and it's still a drama.
  4. Yeah that's the thing I do not have any classic dysautonomia symptoms, and yet this vagus nerve involvement is so strong. I also have high dopamine... that might not help with nausea and in turn vagus nerve involvement. Wonder what can be done to calm the vagus. Thanks for replying to my other threads by the way!
  5. Thank you. I suppose pressure on the vagus could come about by many different means? Yes I definitely have vagus nerve involvement of all kinds after meals. I wonder what I could do to calm my vagus. I already try the whole spectrum of calming things like yoga in morning, sports, distraction. But it comes no matter, particularly after I eat more, but sometimes even after baby food.
  6. Yes! This is totally the case for me, in the morning it is harder. But it is because I also have constant agitation that comes with this. I am suspecting some nerve involvement with my gastro issues. Yes, I eat small amounts already and more at night, hihi. I wonder why that is??
  7. Hi! I get a lot of palpitations after eating, and it could be due to some of the illnesses I have, but it is unrelated to what type of food I eat, and other people with the same illness do not get that. Hence I have thought about the possibility of it being due to dehydration (I have pancreatic insufficiency with some strange nerve involvement and neuropathy in other areas of my body and gastro tract). Thus, what do you do against dehydration as people with dysautonomia? Maybe that would be worth trying for me too. Just drinking lots of water and gatorate, or anything else I can try? How would I check this with a test?
  8. 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.
  9. 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?
  10. 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!
  11. 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!
  12. Yes my doctor said sleep study not neccessary. In fact one said it is okay as long as I have engery (well, I do have, but the whole situation is utterly exhausting!) and one said I might be bipolar. I might ask my GP again because in terms of sleep, these two were useless. As it was at the same time than my pancreatic insufficiency started, my theory is that my body went into a constant fight and flight mode... now of course I am interested in bringing it out of there... But I do not have classic short fuses or adrenaline surges.... maybe I am more easily startled when I am stressed, but as I am a person that does not have too many stressors usually.... But your idea with having too much adrenaline during night time could be something interesting! Maybe I have a light version of that? What does help you? (sleep hygiene I do already!)
  13. Hello, are there any people who have nervous system issues, insomnia (shortened sleep, sleep maintenance issues), but never tired? It seems my body is compensating in hypersensitive nerves in my gastro area, or that is what is responsible for it (have pancreatic insufficiency, Burning Mouth Syndrome, all pointing towards inflammatory processes in the gastro system). I have no POTS, but I was wondering whether nerve issues could do this? Anyone who has shortened sleep but never is tired, but constantly agitated?
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