My summer "vacation"

Mary

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My (identical) twin sons had arranged for me to come to Austin, Texas, where one lives with his wife, for a week spanning the 4th of July week-end. My other son lives in Memphis and he and his daughter were flying out. (My grandson in Memphis would be at a camp for a month where no electronics are allowed!) It was a belated birthday celebration, plus our first real get together since Covid. I was going to combine it with a visit to a sister who lives 2 hours from Austin in Pipe Creek, and another sister was flying out from California to meet me there. It took a lot of planning on my part to be gone for 8 days - 8 days of pills! Arggghhh! :sluggish: Which meant 8 large pill dispensers, making sure I had enough pills on hand, had to order a couple of dispensers. Packing clothes is the easy part. But my pills . . . day pills, night pills, middle of the night pills so I can sleep ....

But I got it all arranged. And going to the airport is a nightmare too - I live 2 hours from LAX (on a good traffic day). The airport shuttle had only recently started running and they weren’t even sure they’d be able to get me home on a return shuttle - not enough seats booked. Which left me with the prospect of driving to LAX at 4:00 a.m. to arrive by 6:30 a..m. for an 8:35 a.m. flight - almost as bad as the pills! But I was determined. Okay, got that all planned and sorted.

So I started sorting the pills a couple of days ahead of time, only a new wrinkle pops up - I stop sleeping. Out Of The Blue. Well, actually I sleep very lightly from 9:30 or so until 11:00 p.m. at which point I pop wide awake, and am wide awake the rest of the night until 5:00 a.m. This is insomnia on a scale I haven’t experienced before. I would say it was a nightmare but I didn’t sleep enough to have nightmares.

I wasn’t stressed, I’d really been looking forward to my trip. I began wracking my brain for anything new I might be doing or taking. All my usual stuff didn’t make a dent, including Unisom, my heavy hitter which almost always works when I’m desperate. That whole time is a blur now but it began to occur to me that I wouldn’t be able to go to Texas if I wasn’t sleeping. Then the night before - rather, the morning I’m supposed to get up at 3:00 a.m. so I can leave by 4:00 a.m. for LAX, I’m still wide awake at 2:00 a.m. and finally conceding defeat. I can’t drive to LAX on almost no sleep, and even if I could, I can’t go to Texas like this. I would be a spectral wraith haunting the halls, scaring everyone, blurry-eyed like something out of The Night of the Living Dead!

At 5:00 a.m. (Still wide awake!) I text my son what’s going on, that I’m not flying that day. But that it’s sudden onset, so I hope to resolve it quickly. He was very kind. They’re used to ME/CFS. I tell him I have a few ideas of what may be going on and he’s able to re-schedule my flight out for a few days later - okay, I’ll miss almost half a week, but will still be there for the week-end. Only that doesn’t happen either. The sleepless nightmare goes on.

At first I thought the problem was I’d run out of NAC (it was unavailable a few weeks ago) and I learned that cysteine is needed to make taurine, and I had learned several years ago in the middle of another sleepless nightmare involving MSG that taurine is needed to help with neuro-excitotoxicity (which did resolve my extreme MSG sensitivity). So confidently I ramp up my taurine, sure I’ve got it and - nothing. Just as bad as ever. Then I think it’s the B6 - in filling my dispensers I inadvertently doubled my B6 dose, and B6 can cause insomnia. I have to go through everything trying to pull out the B6 which looks just like my B1. But nope, that didn’t do it either.

Now my son’s talking about me coming out after the 4th, I’ll see him and my daughter-in-law for a few days, and then they’re going on a long-planned trip for a week, and I’ll pet sit their dog (they’ll get a dog walker in, they know I can’t walk it, but the dog needs company and they have a pool I can float in. It sounds nice.)

Meanwhile, my sister who was going to fly out from California and meet me in San Antonio to go see everyone, is having fun with my sister who lives in Pipe Creek (2 hours from Austin), and THEY got to go up to my son and daughter’-in-law’s and have a nice dinner and a lot of fun and spend the night, and I’m home trying desperately not to feel too sorry for myself.

And then I get a glimpse of hope - my bowels have been affected as well. And not in a usual way when something disagrees with me. I won’t go into the details but, well, somehow (I think this is how it happened, I can’t really remember) this led me to look into vitamin C and sleep. And bingo! Too much vitamin C can cause insomnia! I had made some liposomal vitamin C about 6 weeks earlier. I get sick every time I crash, which is at least once a week. My white cell count has been low for over 20 years, and doctors just shrug. Anyways, the homemade liposomal vitamin C was helping with this only apparently I had finally reached bowel tolerance, which I’ve never done before. And it caused Killer Insomnia. There’s not much info out there about this, but I managed to find some. Doing very rough calculations I figured I was getting roughly 500 mg liposomal vitamin C per tablespoon of the solution, and I was taking 2 tablespoons with each meal . . . (it just seemed like a good amount! :confused:) The good news is that apparently DIY liposomal vitamin C actually works!

Anyways, I stopped the vitamin C and that night, with the help of everything in my large arsenal, I was finally able to sleep. It was heaven. Only a new wrinkle in Austin - my son who had flown in from Memphis just found out he had Covid! Arggghhhh!!!!! :aghhh::bang-head: He’s strong and healthy and was not severely ill, but he tested positive - he had quite mild symptoms. He had had the pfizer vaccine back in March (no, he wasn’t old enough to get it but was on a cancellation list)

So we made a mutual decision - I wouldn’t go at all. I didn’t want to test my immune system and they didn’t want me to do that either. No one else there got Covid. My trip officially over before it began. You could say looking on the bright side that the killer insomnia kept me from being exposed to COVID but that doesn’t make me feel any better. Both my sisters were exposed but they’re both fine. Everyone had been vaccinated, and we’re guessing this was most likely the Delta variant. So my son’s fine, just about recovered, and I talked to my sister this morning who flew in to Texas to meet me and she said she had a great time. And I told her I would invite her again the next time I got to “go on vacation”!

Arggghhhh!!!! :aghhh::xeyes:

And I’m still sleeping.

P.S. I know many of you would kill to be well enough to even consider traveling - I know I’m extremely fortunate. Fwiw, my trip schedule had crash days built into it - e.g., the day after I flew I would be in bed, then up for a day and then down again, etc. So I was hoping to have 3 good days out of 8 . . .

* * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Photos from my vacation! This is Emma and Iggy. I think you can tell who is who :rolleyes:

Emma is a rescue and supposed to be the sweetest dog in the world, who I was going to be pet sitting. And extremely lifelike Iggy (who is not in fact alive) was a wedding gift for my son and his wife from my family -

I love the picture! Wish I was there! :cool:
emma.jpg
 
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Mary

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Awww...I'm sorry. At first as I was reading, I was going to say you are very brave to try this but then got sad that you were not able to go after all. :(
Thanks @Judee - you know, the whole catastrophe with the Florida condo was ongoing at the same time, so whenever I started to feel sorry for myself or just sad, I thought of those people . . . anyways, it's life with ME/CFS! No healthy people I know deal with this kind of situation! :sluggish:
Medics in the Korean war and Vietnam used it to stay awake when things were busy.
They used vitamin C to stay awake? How interesting! Probably easier on one's body than some sort of upper!
 

pamojja

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Sorry to hear the vacation didn't work out at all, and instead suffering from insomia for quite some time.

Doing very rough calculations I figured I was getting roughly 500 mg liposomal vitamin C per tablespoon of the solution, and I was taking 2 tablespoons with each meal . . . (it just seemed like a good amount! :confused:) The good news is that apparently DIY liposomal vitamin C actually works!
It works only a little better than regular ascorbic acid, according to his recent study:

https://isom.ca/article/

Summary

Comparisons of the liposome-encapsulated and non-encapsulated (powder) ascorbate supplementations demonstrated that liposomal ascorbate intake results in longer retention of ascorbate in blood. Plasma concentrations of ascorbate remained at the level of 100% increase during 3 hours for non-encapsulated ascorbate and longer than 4.5 hours for liposomal ascorbate. The maximum percentage of ascorbate increase was the same for both formulations and reached 150%-170%.

The concentrations of ascorbate in white blood cells were changed after intake of ascorbate in the form of non-encapsulated and encapsulated liposomal ascorbate supplementations. The average maximum increase in the concentrations of ascorbate in cells was the same for both formulations (in range 40%÷50%). The data show that liposomal ascorbate resulted in faster intake by cells. The comparison of the areas under the curve for concentrations that were higher than initial levels showed that AUC was on 50% larger for liposomal formulation in comparison with non-encapsulated ascorbate.

The data support our hypothesis that hydrocortisone can have effect on the uptake of ascorbate by cells, when it is given as an adjuvant to ascorbate supplementation. The injection of hydrocortisone before intake of supplements resulted in more favorable percentage of intracellular ascorbate intake.

The weakness of the study is the low number of the participants and the measurements of ascorbate concentrations in plasma and cells by a method based on the condensation reaction of dehydroascorbic with formation of colored product that was detected by fluorescence.
So with an area under the curve 150% higher, liposomal might only be 1/3 less required for similiar effects. With usually a much larger price difference, or effort to make, not really worth the bother.

However, in cases were only little regular ascorbic acd, or the even the milder pH-neutral mineral ascorbates, is tolerated, liposomal might be to the rescue. When I titrated for an experiment to my bowel-intolerance, it showed up at 50g ascorbic acid a day. Continuing with self-made liposomal (sonic method) could increase that upper limit an other 1/3 above the 50g per day.

Too much vitamin C can cause insomnia!
Just shows again how different we all are. When I wake up during the night to go to the toilet, I sometimes take a teaspoon full ascorbic acid (~5g) in water to drink, and go right back to sleep.

Favourite method was to inject it.
IVs I too found energizing.
 

Mary

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Favourite method was to inject it.
This is just rather mind-blowing for me - who woulda thunk that vitamin C could do this? And, the effects dissipated quite rapidly once I stopped taking it.
When I wake up during the night to go to the toilet, I sometimes take a teaspoon full ascorbic acid in water to drink, and go right back to sleep.
I was takng vitamin C for sleep before all this (as well as several other things). Actually if you're low in vitamin C, that can cause insomnia too. When I was tapering off of lorazepam a few years ago, I read that vitamin C can help with neurotoxicity so I was popping vitamin C every few hours, and it helped with feeling so wired and with sleep. So I never never expected it to be linked with insomnia! But I guess my dose got high enough . . . and we all are different too, as you say!
 

lenora

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Oh, @Mary.....I'm sorry to hear that you never went on your trip at all. I was going to write and ask how things went, but thought you'd be rather tired out by it all for a week or so.

My daughter and her hubby (Dallas) were to go to Santa Fe for the long weekend and were so messed around by the airline that they eventually cancelled. So you may have had airline troubles on top of everything. (And I know that makes you feel so much better, doesn't it?)

Yes, I know what you mean about all the pills we have to drag along...and that's just what it feels like, any trip is a drag. It's nice to see the people at the other end, but even nicer if they visit us.

Still, it was a wonderful chance to see your entire family, but I am glad that you avoided COVID. Your son even had the vaccination a few months ago....doubly too bad.

The whole affair must have been extremely disappointing. As a longtime sufferer of rather severe insomnia, it's not much fun to be awake for 24 hrs./day for days at a time, is it? Interesting about the Vitamin 'C'. I didn't realize it caused insomnia, but I was told years ago by one of my doctors that it can be highly irritating to the bladder if taken anywhere near bedtime.

Well, at least we insomniacs now have something to keep us alert during the day....problem is that we still can't sleep.

Again, sorry that it was all such a bust and that you were going on a day by day basis. I'm sure you were all greatly relieved to have it resolved by the end of the saga. A real shame. So no vacation at all? And you still had to unpack....crummy. Yours, Lenora.
 

Zebra

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P.S. I know many of you would kill to be well enough to even consider traveling - I know I’m extremely fortunate
I think we should all strive to have empathy for others without judgement or jealousy.

You put so much time, thought, and effort into planning a visit with your family -- that would work for you and your limitations -- and I'm so sorry it didn't work out. How deeply disappointing.
 

Mary

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My daughter and her hubby (Dallas) were to go to Santa Fe for the long weekend and were so messed around by the airline that they eventually cancelled.
I know they did have some wild weather at the Dallas airport! Maybe that was the problem?
As a longtime sufferer of rather severe insomnia, it's not much fun to be awake for 24 hrs./day for days at a time, is it?
I thought of you as this was going on! I've had lots of insomnia before, but nothing like this! So I think I got a little taste of what you go through --- :sluggish:
So no vacation at all? And you still had to unpack....crummy.
Nope and yep! you either laugh or cry, so at least I was able to laugh with my sister when we talked about future "vacations" we might "take together"! :rofl:
I'm so sorry it didn't work out. How deeply disappointing.
Thanks @Zebra ! Yes, extremely disappointing, which is why I was so glad I was able (after a time) to be able to laugh about it with my sister! (Laugh or cry . . . )
 

Jyoti

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Oh @Mary.... I am so sorry. Such a little thing in the larger scheme, right? Getting to spend time with family for a few days. With crash days built in. A very modest proposal really. So very frustrating that you ran into one thing after another.

But mostly you were just...awake. It is so insidious and overwhelming when it strikes. It is not at all difficult to understand why sleep deprivation is a successful torture strategy! After a few nights and days without sleep, I would surely turn on anyone in exchange for a few hours.

And hats off to you for figuring it out. Who knew? Vitamin C. That is really crazy. But you did figure it out and are sleeping now, so that is something.
 
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At first I thought the problem was I’d run out of NAC (it was unavailable a few weeks ago) a
From what Ive reaed in several threads here, "they're" doing the same thing to NAC that they did about 20 yrars ago to Tryptophan ..... they're taking it off the market because some pharma company has created a drug based on NAC and they dont want the competition.


Back in the late 80's, a sotyr was put out about deaths from tryptophan. Then a story followd, saying that those deaths were attributed to faulty cleaning of the manufacturing machinery which caused poisonings. Then later still, both stories were denied.

I forget which pharma co was creating a drug for migraine headache that used tryptophan as its principal ingredient. Tryptophan stayed off the market for over 20 years, til the pharma company had reaped huge financial benefits from its migraine drug.
Meanwhile, my sister who was going to fly out from California and meet me in San Antonio to go see everyone, is having fun with my sister who lives in Pipe Creek (2 hours from Austin), and THEY got to go up to my son and daughter’-in-law’s and have a nice dinner and a lot of fun and spend the night, and I’m home trying desperately not to feel too sorry for myself.
This is where the brief but heartfelt Little Wallow is absolutely essential ....
Anyways, I stopped the vitamin C and that night, with the help of everything in my large arsenal, I was finally able to sleep. It was heaven.
Your diligence in trying to track down what was causing your insomnia is a tribute to the human spirit, yours in particular ....
Only a new wrinkle in Austin - my son who had flown in from Memphis just found out he had Covid! Arggghhhh!!!!! :aghhh::bang-head:
Oh good blazing crap !!! Life can truly be a biatch .... but like you and other posters have said, focus on what you may have been saved from, particularly if it was Delta .... that comes after the Little Wallow, whose healing abilities are not to be dismissed casually ....
Photos from my vacation! This is Emma and Iggy. I think you can tell who is who :rolleyes:
Iggy is gorgeous .... what a great wedding present !!!


Emma looks like she would have been a lovely presence, allowing you more time to recover along with grat lashings of doggy-love, which is healing all on its own ...
Thank you for posting that .... I remembered reading it somewhere in these threads when you mentioned making it, but would never have been able to find it again .... you read my mind !!!


I salute your courage, your good spirits, and your resilience in dealing with this totally shite blow .... very Onward and Upward :rocket::rocket: !!!!
 

Mary

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From what Ive reaed in several threads here, "they're" doing the same thing to NAC that they did about 20 yrars ago to Tryptophan
I read that too - but there has been push back and actually NAC is now available lots of places, including iherb - but Amazon has stopped carrying it, and I prefer not to buy supps from Amazon when possible so that's fine with me! Actually I had thought the tryptophan ban had to do with Prozac - tryptophan was banned the same week that Time ran a big story about Prozac . . . tryptophan was being used for depression, boosting serotonin. In any event, I agree, it's the same type of tactic!
This is where the brief but heartfelt Little Wallow is absolutely essential ....
I'm sure I wallowed some! I told my sisters to not have any fun and to be sure to sing dirges (e.g., "Song of The Volga Boatman") to which they readily agreed! :wide-eyed:
Your diligence in trying to track down what was causing your insomnia is a tribute to the human spirit, yours in particular ....
Well, I was propelled by a few things: (1) it was sudden onset so I thought the solution had to be within my grasp and (2) fear - I didn't know how long I could go on that way with so little sleep- seriously! :sluggish:
Emma looks like she would have been a lovely presence,
Yeah, I almost wanted to see her more than my kids! :rolleyes: (don't tell them I said that! Actually, I think they would agree - they're all in love with her! She's a relatively new addition to the family )
 
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Actually I had thought the tryptophan ban had to do with Prozac
That may have been coincidental .... I mean the withdrawal of any form of tryptophan from the market and the intro of Prozac, which I think came a little earlier.

The medication may have been produced by Pfizer or Merck, not sure, and it was called something really transparent, like 'Triptopin', because migraine suffers had been using tryptophan for years prior to this, and unfortunately, had sung its praises a little too loudly ....
 

BrightCandle

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I had a problem last week where I upped my Reishi intake alongside a few other things and I was feeling so good I dropped my 5HTP intake. I turned into the hulk over night, I literally wanted to nuke the UK to kill one doctor who treated me badly 5 years ago, I was bouncing off the walls angry. Took me a few days and a conversation with JL to work out what had happened and insert some more 5HTP. I was fixed the next day. I had left a string of disasters, 2 friends I had sent to the wind for marginal sins, my partner thought I was quite likely to shoot someone and a whole bunch of other people were pretty annoyed at me.

Turns out the higher Reishi intake inhibits conversion from Trypotophan to 5HTP, there are several papers on it in mice, never replicated in humans that I know of (until last week)! Dropping that dose also shot a bunch of conversion straight into the dopamine/adrenaline metabolic pathways = hulk man! I dropped the dose of Reishi and the problem is resolved but I'll be wary about the 5HTP dose in the future as that was a dramatic impact. You can try to explain the impact of messing with your neurotransmitters to your friends but they don't really understand. I apologised, they have forgiven me but aren't actually talking to me. Still I don't intend to nuke the UK this week so I think that is a win.
 
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I had a problem last week where I upped my Reishi intake alongside a few other things and I was feeling so good I dropped my 5HTP intake. I turned into the hulk over night, I literally wanted to nuke the UK to kill one doctor who treated me badly 5 years ago, I was bouncing off the walls angry. Took me a few days and a conversation with JL to work out what had happened and insert some more 5HTP.
I think you meant to post this in Josh Liesks thread, no?

Then again, it's none of my bizzy. Sorry. Rock on !!!