Hi Edward,
I get bad restless legs where I cannot fall asleep. When I remind myself that its my body trying to equalize itself, I worry about it less.
I don't' LIKE missing sleep. That causes new suffering, but, that, too, isn't as bad if I don't catastrophize it.
Self compassion is one thing. And I give myself LOTS OF THAT. But I try not to think I'm all alone in suffering, even though it feels like it...in the dark...in the middle of the night when everything and everyone else SEEMS to be resting.
Hope that makes sense. I have found no remedy for any of these symptoms, though people always recommend a new med or a new supplement. But I learned the hard way, they don't work, or, even if they do, they cause another problem...ALWAYS.
You have my deep compassion, Edward. This is real suffering and we deserve to acknowledge it. Then, I try to let it go. (I wish I could cry...that would help me release a bit. But while I'm on Paxil, I cannot cry, either. )
atypical in presentation of side effects, super sensitive to small doses and general delayed responder. never took a psych med that didn't' make me sick immediately with infections and restless legs. have never been able to tolerate being on them, but have never had support to get off so I've been bouncing back and forth. i don't like capital letters. sorry. Paxil — 1 mg — 2 yrs — holding until Oct. 7 doc appt. Seroquel — 50 — planning taper | trileptal -75 planning taper prasozin 1 mg planning taper started my psych med saga in 2001 and wish I never had. I had some difficulties with sleep and anxiety, but NOTHING like what was in store for me after trying every med out there. My last treatment center promised to "get me totally off" in 2022 but it was a lie. They just switched drugs and added more and more in a desperate attempt to help me "stabilize," so they could call me a "success story" once insurance stopped paying. I agree with those who state that this industry needs to change. AND I'm working on not being resentful about my suffering because it doesn't help anyone. been on an off cocktails since 2001. Most recent mixture, prescribed in 2024: 20 mg Paxil, 150 Trileptal, 50 Seroquel, 2 mg prasozin, (for PTSD/nightmares.) immediately went to 1 mg prasozin, and after 3 months cut to 10 mg paxil. No felt effects. Then went to 5 about 3 months later, (though I didnt' keep track so I'm rusty.) No felt effects. So, I've roughly been on 5 mg for a year and a half. Side effects always force to to start tapering RIGHT AWAY. I didn't start keeping track of my Paxil taper until this year. I went from 3mg to 1 in 10 months, using a liquid Maudsley-ish slow taper. Again, no felt effects until now. October 2026...sleeping less and feeling more sedated during the day. Having trouble managing my social life without getting over-stimulated. Must set boundaries according to my body and not my heart. Holding 1 mg paxil until blood work done and evaluated, and to see if build a social life that doesn't make me lose sleep. Sounds silly as I type it, but actually, nothing is "silly" on this ride! Everything is WILD!!!! LOL Keeping all other meds the same. Sorry so long.
Thank you so much for your advise, I try my very best not to worry , they put me on very strong benzodiazepines to control my extremely severe reaction to only 7.5mg of Mirtazapine given for sleep but I suffered a paradoxical reaction where my legs and arms were having seizures like events , now it may be that I’ve become tolerant to the benzodiazepines and Im starting to wake at night for brief periods, the days can be long when I live all NR with no support 🙋♂️
Yes, Edward. I can relate to that too! You have support now! I wish we could live nearby, but, such is the big wide world.
thanks for posting your journey. It helps all of us. I really feel for what you've been through. It's a slog, for sure, but we around here are trying to enjoy it.
atypical in presentation of side effects, super sensitive to small doses and general delayed responder. never took a psych med that didn't' make me sick immediately with infections and restless legs. have never been able to tolerate being on them, but have never had support to get off so I've been bouncing back and forth. i don't like capital letters. sorry. Paxil — 1 mg — 2 yrs — holding until Oct. 7 doc appt. Seroquel — 50 — planning taper | trileptal -75 planning taper prasozin 1 mg planning taper started my psych med saga in 2001 and wish I never had. I had some difficulties with sleep and anxiety, but NOTHING like what was in store for me after trying every med out there. My last treatment center promised to "get me totally off" in 2022 but it was a lie. They just switched drugs and added more and more in a desperate attempt to help me "stabilize," so they could call me a "success story" once insurance stopped paying. I agree with those who state that this industry needs to change. AND I'm working on not being resentful about my suffering because it doesn't help anyone. been on an off cocktails since 2001. Most recent mixture, prescribed in 2024: 20 mg Paxil, 150 Trileptal, 50 Seroquel, 2 mg prasozin, (for PTSD/nightmares.) immediately went to 1 mg prasozin, and after 3 months cut to 10 mg paxil. No felt effects. Then went to 5 about 3 months later, (though I didnt' keep track so I'm rusty.) No felt effects. So, I've roughly been on 5 mg for a year and a half. Side effects always force to to start tapering RIGHT AWAY. I didn't start keeping track of my Paxil taper until this year. I went from 3mg to 1 in 10 months, using a liquid Maudsley-ish slow taper. Again, no felt effects until now. October 2026...sleeping less and feeling more sedated during the day. Having trouble managing my social life without getting over-stimulated. Must set boundaries according to my body and not my heart. Holding 1 mg paxil until blood work done and evaluated, and to see if build a social life that doesn't make me lose sleep. Sounds silly as I type it, but actually, nothing is "silly" on this ride! Everything is WILD!!!! LOL Keeping all other meds the same. Sorry so long.
Maybe I’ll move from Ireland but everything here is so nice, it’s one of the best places to live in the world , most things here are under control not like the big countries with corrupt politicians and governments no matter who is in power .
i'm so glad to hear that! Yes, the world is not my favorite place right now. I try to keep my brain in local events...
atypical in presentation of side effects, super sensitive to small doses and general delayed responder. never took a psych med that didn't' make me sick immediately with infections and restless legs. have never been able to tolerate being on them, but have never had support to get off so I've been bouncing back and forth. i don't like capital letters. sorry. Paxil — 1 mg — 2 yrs — holding until Oct. 7 doc appt. Seroquel — 50 — planning taper | trileptal -75 planning taper prasozin 1 mg planning taper started my psych med saga in 2001 and wish I never had. I had some difficulties with sleep and anxiety, but NOTHING like what was in store for me after trying every med out there. My last treatment center promised to "get me totally off" in 2022 but it was a lie. They just switched drugs and added more and more in a desperate attempt to help me "stabilize," so they could call me a "success story" once insurance stopped paying. I agree with those who state that this industry needs to change. AND I'm working on not being resentful about my suffering because it doesn't help anyone. been on an off cocktails since 2001. Most recent mixture, prescribed in 2024: 20 mg Paxil, 150 Trileptal, 50 Seroquel, 2 mg prasozin, (for PTSD/nightmares.) immediately went to 1 mg prasozin, and after 3 months cut to 10 mg paxil. No felt effects. Then went to 5 about 3 months later, (though I didnt' keep track so I'm rusty.) No felt effects. So, I've roughly been on 5 mg for a year and a half. Side effects always force to to start tapering RIGHT AWAY. I didn't start keeping track of my Paxil taper until this year. I went from 3mg to 1 in 10 months, using a liquid Maudsley-ish slow taper. Again, no felt effects until now. October 2026...sleeping less and feeling more sedated during the day. Having trouble managing my social life without getting over-stimulated. Must set boundaries according to my body and not my heart. Holding 1 mg paxil until blood work done and evaluated, and to see if build a social life that doesn't make me lose sleep. Sounds silly as I type it, but actually, nothing is "silly" on this ride! Everything is WILD!!!! LOL Keeping all other meds the same. Sorry so long.
Take magnesium glycinate (200 mg of elemental magnesium) 1–2 hours before bed and maintain your vitamin D levels. Your sleep will improve. Vitamin D and magnesium deficiency is very common
Try to maintain your vitamin D level between 60-80ng/mL and take vitamin D3 with vitamin K2. K2 is very very important. I am damn sure you'll feel much better
I don't have deep nutritional expertise, but the main strategy for loose stools and histamine sensitivity is focusing on soluble fiber.
Soluble fiber helps by absorbing excess water in the gut and slowing down transit time to firm up stools, unlike rough/insoluble fiber which can speed things up. The key with low-histamine eating is to stick to freshly cooked items, as histamine levels naturally increase in leftovers and fermented foods.
Eating smaller, frequent meals can also help take the workload off your gut while your nervous system recalibrates. Hope things settle down soon!
I forgot to tell you that you should have your 25-hydroxy vitamin D level checked prior to taking supplements. After using around 5,000 IU for 2 to 3 months, you can check your level again and then taper down to a maintenance dose. It's best to do this under the guidance of a good doctor. Most doctors say that 30–50 ng/mL is okay because most of them are not familiar with the latest research. You should at least keep your levels above 50ng/mL (50-80ng/mL)
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