Need help quick

[sweetkamie20]

Yep, I can go with all of that. !...

No magnesium expert:
The magnesium suggestions show he knows a little bit about it...

5-HTP expert!:

No GABA expert:
...Trudy Scott's better for that.

No product expert:

But that said: 5-HTP, here I come...again ...

Yup, see all this is why I listen to your perspective keenly . You have researched all the nuances and have personal experience with it all. And you parse information.

That is a disappointment about the product Why bother selling that in that form? If he explained the limitations or drawbacks of proportions I'd understand....

I'm going to check out Trudy Scott. Actually, my husband will end up checking her out first because he has been researching this stuff ever since I have known him (10 years). But he's been researching it for lots of things other than fibro. And, as you know, guidance for fibro needs to be more specific...so, my husband is the repository of info on the body and I am more like the trial by error researcher. Few things work with me the same as advertised lol. I know you relate.

I hope revisiting 5-HTP will prove fruitful. Keep me posted if you don't mind

As for GABA: did you say you ended titrating up to 2x the recommended dosage? I took some last night and this am. I have had restless leg at night on many occasions but few and far between. Last night I had the similar feeling but it was in my thighs-diffuse and mildly uncomfortable but not enough to feel like I had to adjust my position...I guess like a mild cramp.

Trust: I stumbled across the truth that you did- life is better when I extend trust beyond what someone has already earned. And it is also better when I reign it in if someone demonstrates there's an area they don't deserve it...we are both blessed to have a few people we trust. Family does seem to be a crap shoot in this life. Not sure why we humans are so reluctant to let go of expectations on family but, I suspect, it's written into our souls what family is intended to be. I'm not opposed to certain things being hardwired into our DNA when they reflect a spiritual reality that should exist; I like that eternity has been set into the hearts of people to show them what they are intended for. I just wish it was easier for our souls to avoid the disappointment that is often attached in this life

 

[sweetkamie20]

Hope the GABA helps @sweetkamie20

Thanks Ariel! . I will give an update when I have one

 

[JayCS]

husband is the repository of info on the body and I am more like the trial by error researcher.

Hehe, sounds a bit like your his guinea pig as well as your own?

Why bother selling that in that form?

Probably attractive for a majority and better than nothing....

GABA.... did you say you ended titrating up to 2x the recommended dosage?

No no. That was passiflora I think you mean.
There is no recommended dosage of GABA, you need to trial to find your own. That's where your trial by error research comes in.
Any person or company claiming there is such a thing hasn't done their homework.
Trudy Scott (anti-anxiety therapy is her focus) has found it's best to start with 125mg sublingually and increase from there. I started on 750mg tablets and soon ended at 1.600mg = 1.6g, but that much for me is only possible by balancing with glutamine and theanine. (Balancing might be where your husband comes in, but where glutamine is an overdose für you is again trial and error). Then I needed to increase to about 2.000mg = 2mg. And when my MCAS was triggered I had to increase to 3.000mg = 3g. (I'm also not sure about the exact amounts, it's 5 full capsules, and if I weighed that out right on a digital chemistry scale once, they are 600mg each.)
A year before, 2.400mg had caused "serotonin syndrome" symptoms, not nice at all, but quickly reversible. So: watch out, plus: it changes.

A colleague of mine hearing my story tried and realized that 300mg greatly reduces her brain fog, extremely happy with that, but going above it increased loads of symptoms incl. pain. My acupressurist had a go but realized it wasn't clever to ignore Trudy Scott's questionnaire, which then taught her she needed tyrosine, not GABA at all - so her dosage is 0.

So: What dosage did you take and in what form?

Last night I had the similar feeling but it was in my thighs-diffuse and mildly uncomfortable but not enough to feel like I had to adjust my position...I guess like a mild cramp.

If this is reproducible it's a good start! I have similar signs that are tell-tale for dose (esp. bladder pain and seizures). Trouble is they don't tell you which way to go, just that the dose isn't quite right yet.
The other problem is that the body has to get used to it being added externally first, but that shows that it is working, and in this case it is working on your muscles, which is probably what you want it to do. My side effects for about a week were drowsiness, 2) sometimes vivid (& weird) dreams, 1.5 nose bleeds, and a day or two of dry mouth & itchiness. Then none at all, except when overdosing.

If you want to do something rather than wait a few days, my suggestion would be to reduce the dose a little, praps then increasing again.

 

[JayCS]

Poor guy. I am a terrible Guinea pig in every way. Resistant to trying new things and when I do the consequences are usually 3 days of $!%#.

An interesting challenge. My answer for meds is to stop them, for supps is to (research them and) increase from minimal doses (10%?).

How did you reverse the syndrome symptoms? And what does "it changes" mean? Is it the body's reaction that you are talking about?

Just immediately dosed down again from I think it was 1800 to 1200 for a day or two and slowly back up. The sfx are as quickly gone as they come. "it changes" is referring to our need for it.

I am reading Trudys blog. Stumbled across her last night . I saw the lists of symptoms for various deficiencies but no questionnaire...

That is what she calls "questionnaire". ;-) The list is what she recommends to ask = question yourself with.

challenge will be increased by overlapping symptoms making it less clear how to pin down what's wrong since several things seem to apply...

That's the fun of it. ;-) Of course everyone has something on every list. I'd start with the list where you have most on. Or most percentage of. If several things seem to apply then perhaps several things do apply for you.

I took one GABA 500mg tablet last night and this morning. Sleep wasn't as good but this am I went back to sleep .

Wow, that's one heck of a lot. May have been less than I started off with. But it's 4x what Trudy Scott suggests to start off with. Are you tolerating the tablet, do you think? GI-wise, or sensitive to the fillers? As I still had some left when I realized I wasn't, I pulverized them and encapsulated that. (Due to the portion of fillers you have to convert the values.) So are you gonna keep trying 500mg or cut them in half?

I'm gonna keep reading Trudys blog and be a joyful Guinea pig

Ah, there's a good girl... ;-D

 

[JayCS]

I hope revisiting 5-HTP will prove fruitful. Keep me posted if you don't mind

Well, 50mg with my evening meal at around 8, didn't do anything for my sleep, but now I'm trying to wake up at after 10 my hands and arms are feeling weak and numb, my mind not too zombified though. What did help getting (back to) sleep was 3 cold showers at 11, 2 and 6 (20 seconds). I thought 6 might be too late, but it caused a 2.5h sleep stint, at 2 it was a 3.5h stint, far longer than I ever manage without cold showering - amazing, ey?

5-HTP only has a short half-life of 2.5 to 7 hours, but the "full-life" can be weeks. Also I guess it's one-tracked to think of 5-HTP only as a pre-cursor to serotonin, that it only increases that. Like every substance it will have much more than just one single effect on our bodies, and adding it from the outside will probably be different from any changes inside our bodies itself.

Not sure yet whether I'll continue the trial by using it every second day to be sure I'm not mistaken, or by trying to get my body used to it for a week. At the moment I'm considering stopping, because my previous trials almost prove I'm not mistaken, and I couldn't get used to it.
Murphree is already stumped here, as he only seems to know the possibilities 1) it helps sleep through, 2) nothing happens and 3) makes you more alert, with the recommendations 1) add more at dinner, 2) add more at bedtime, 3) only take at dinner. In my case I knowingly didn't even take it at bedtime, I took it earlier & at dinner... If I follow taking it at bedtime, I'm pretty sure it'll zombify me.
.....
Edit: OK, I've now spoiled my trial by looking some previous experiences up on my blog, Dec 20, #174: got my focal seizures from it (at night, extremely unusual for me, so very telling!), looked that up on an epilepsy forum and found it increases seizures for some, reduces for others. Also noted: English wikipedia (as well as other sites too) also says “Potential side effects of 5-HTP include heartburn, stomach pain, nausea, vomiting, diarrhea, drowsiness, sexual problems, vivid dreams or nightmares, and muscle problems.”… Murphree, where are you now??
Following that I'd also tested combinations of 5-HTP with and without tryptophan and GABA. Stopping 5-HTP was best....

 

[sweetkamie20]

Well, that journal of yours is always quite handy! I am glad you have it because it clarifies things for you quickly. And you don't have to repeat trials or second guess everything so hard.

Seems there is no all-in-one resource, Murphree et al. We each really need our own medical research teams! Someone please figure this beguiling malady out!

I have been enjoying Mr Toads Wild Ride for the last week Definitely have nightmares every night, but some nights I actually sleep more than 4 hours and the sleep is half-deep instead of no-deep...hard to part with sleep because it's been sooooo long that I don't get sleep! Lol

I am giving the 5HTP and GABA another week to see where it takes me...

Other than that, how are things going with you?

 

[JayCS]

Other than that, how are things going with you?

So yeah, ditched 5-HTP once again.
Main success: 2 more fast cold showers at night are brilliant for my sleep - but still no increase in energy as hoped .
So still thinking about Murphree's copper and retinol.
Plus praps going down more on salicylates and oxalates for my MCAS, as I've had a few really bad feverish hot flushes while eating. But if I went that whole route, it would bring my foods from 50 down to 40, instead of up, and also some important ones for my taste, like (sweet) apples .
Next idea up is olive leaf extract (oleuropen) (Eric Berg, DC), for ME/CFS/FM, but starting slow cos of its possible GI side effects.
And annoyingly my esophagus constriction / blocks have been "playing up", 3 meals in a row , so I've had to drink more to get the capsules down, which is in turn increasing bladder frequency, urge & pain a bit . And when do I take a great deal of my supps?...

But the weird unexpected success with the cold showers and at least 2 new ideas ? ? are giving new hope in itself,
plus also that there are still many further doors to come across and open in this giant castle, adventures to ride out.
Moving way too fast to twiddle my thumbs and go to full acceptance mode at the moment...

 

[sweetkamie20]

Up to 4 years ago...

My husband was a tree climber - that takes courage. No thanks! I'm a clutz lol

Next idea up is olive leaf extract (oleuropen) (Eric Berg, DC), for ME/CFS/FM, but starting slow cos of its possible GI side effects.
And annoyingly my esophagus constriction / blocks have been "playing up", 3 meals in a row , so I've had to drink more to get the capsules down, which is in turn increasing bladder urge & pain a bit

I've used olive leaf on and off for years but now only when exposed to illness. Truth is I can't use it regularly cuz it doesn't sit right with me-its like a subtle nausea feeling. I hope it works out better for you.

Alfalfa I tolerate all of the time so long as I don't use too much. It is often amazing for allergies. Are you having allergic reactions when your esophagus is swelling? I am when mine does...

 

[JayCS]

Bahahaha . This made me bust a gut lol

Oopsie, I only have one of those, and that not even particularly "whole". Careful how you go there! ;-)

They say we are what we eat take a look at how the Guinea turned out

You mean I'm gonna end up real cute one day? Or a trivial creature doing no more than eating, dropping, sleeping, cuddling & playing?

tree climber - that takes courage. No thanks! I'm a clutz

Me on-and-off-tree climber turned full time clutz (unless I get my energy back...).... - learning new words here non-stop...

like a subtle nausea feeling

Drat. Get that often enough since MCAS. Warns me even more to start lower than low.

Alfalfa I tolerate all of the time

I like & tolerate the sprouts, but do you mean as a supp?

Are you having allergic reactions when your esophagus is swelling? I am when mine does...

Ouch. Nope, it's developed a "Schatzki-ring", reducing the diameter by a third, maybe a reaction to decades of hyperacidity, under control too late. Sposed to get it dilated in hospital "soon" - but at the moment I couldn't take the backlash nor the CoV-danger. I also often wonder whether 1-2 days in hospital will ever be worth it. I doubt there's an allergic part to it as once I've "got rid of the problem" I can immediately eat normally again, without any pain or repetition.

 

[JayCS]

But that schatzki-ring sounds not so pleasant. How do you alleviate it?

Last year I learnt to massage/tap the bolus away, searching for ideas found drinking a fizzy sip (like steakhouse-syndrome).
Then a month before my first jab I got a gastritis. Only a few hours of problems, but after that it changed in quality & quantity:
Doesn't hurt quite as much, but takes ages, hardly ever now goes down, massaging always makes it worse, fizz usually.
So I can hardly alleviate it now, can only prevent it as much as possible (from daily to 2-3x/wk). or have to reverse it...

 

[JayCS]

you will tell us whether we are truly what we eat

Well I am a guinea pig, but as opposed to Peruvians I don't...!
- Challenge enough eating some dairy, even tougher thinking about trying some tuna for retinol - too many films in my head.

bummer! I hope things go back towards the prior status quo.

No chance unless I do sometime get to hospital, which'd "drag a rat tail behind it" (Is using a German phrase.cheating?)

Okay, the steakhouse syndrome is a new term to me.

Researching my body and forum 'work' has taught me myriads of words I never knew ... whether in German or English.

Are you making that up just to keep me in your employ

Point for you...

 

[Auriel]

Ok I’ve got as far as working out bolus is, food stuck in the oesophagus? (but it gave me 4 choices of what it could mean) and stakehouse syndrome means the same? fizzy sip also did what I thought it would and gave me different choices of cocktails to buy online so I’m still stuck on that one for now, but I think I’ve worked out that you have to rub your tummy/chest area to stop food sticking is that right? Oh please someone help me your post made me feel like I’d jumped into a parallel universe I got very confused (I feel better now I think I’ve figured most of it)

 

[JayCS]

Ok I’ve got as far as working out bolus is, food stuck in the oesophagus? (but it gave me 4 choices of what it could mean) and stakehouse syndrome means the same? fizzy sip also did what I thought it would and gave me different choices of cocktails to buy online so I’m still stuck on that one for now, but I think I’ve worked out that you have to rub your tummy/chest area to stop food sticking is that right? Oh please someone help me your post made me feel like I’d jumped into a parallel universe I got very confused (I feel better now I think I’ve figured most of it)

OK, so you really want the solutions? Here they come... not for the faint-hearted.
A bolus is just the name for the normal "balls of food" when we eat and swallow, not usually getting stuck.
If people eat bits of cows, the meat fibres can stick together more than other food and even get stuck. That's the reason for the nickname "steakhouse". Doesn't have to be meat, it can be not chewing, alcohol, GERD.... And fizz can help a little bit by bringing gas into the goo.
In my case I have this Schatzki ring above the stomach, making my oesophagus narrow. I don't eat animals. And any food will do, sometimes even yogurt etc, and even drinking a lot with my supps is no guarantee. If I don't wait long enough between mouthfuls, pressure builds up and it all sticks together and won't go down. Before the gastritis, rubbing and tapping tummy/chest (above and below sternum) did help get it moving again, sometimes fizz helped, if it wasn't too bad, or had moved a bit. If not, it makes it worse. When I try rubbing at all now, I need to be near the bathroom, and essentially I've given it up, the chance of it helping is about 5%. Either it goes down or has to come up, there's no middle field any more. The "up" is sometimes easy, but it's got increasingly difficult and strenuous too, even tho the method isn't complicated. Means I have to be extremely mindful with every single mouthful and immediately stop chewing and remove everything incl. liquid out of my mouth if I feel the slightest build-up of pressure.

What makes this interesting is it's another example for believing something may be fibromyalgia. Someone else in my fibro clinic had it too. And I thought it made sense, thought it was the oesophagus-muscles cramping. But then I was wondering if it is a symptom of eosinophilic (o)esophagitis (EoE) or MCAS (the oesophagus mast cells playing up) and just wanted to get it checked, like everything. It wasn't visible last time the gastroenterologist had a look 2 years ago and wasn't visible to two ENTs in the meantime either. When he compared the pics he could now see a hint of it 2 years ago and it has now become "impressive" as he put it in his report. Only reason I don't think it'll get worse is because I've got my food triggers sorted out perfectly, so GERD is no longer an issue.

 

[Auriel]

Ok, Cool, ta, i feel better now

 

[sweetkamie20]

When eating out and you have to rub around your sternum etc you should ask your friends to mirror everything you do so that you look normal . Maybe you guys can make it look like a dance routine, clack spoons on the table, and rap between bouts. That's what kind of friends we all deserve #jaycs