Author Topic: Berlin1984's thread  (Read 3553 times)

berlin1984

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Berlin1984's thread
« on: March 21, 2021, 02:12:38 PM »
Hi, Berlin, off topic - What job can a man with POIS and CFS do in Germany? From your point of view?
Do doctors in Germany accept the treatment of CFS syndrome
patients?
I don't classify myself as really a CFS guy. Maybe I seem like it in the forum here? When reading others posts, I think I'm in much better condition than others. (lucky!)

Not CFS, but more of a: I have POIS and some kind of issues with energy and motivation/lethargy and regulation of temper (anger etc). Sometimes I can be super energetic and take long walks or do sports, sometimes I can barely stand properly and need to lie in the couch for a while. Or I nearly fall asleep during daytime.
I'm not diagnosed. Everytime I went to doctors it was a bit of a failure, I just get directed to some specialists where I then either don't make an appointment or they don't find anything.
I'm a big fan of self experimenting / biohacking so I tried a lot of supplements to help myself, some of them even work ;-)

Job - I'm very lucky. Basically working from home since 2011, with the exception of sometimes some customer meetings which I dread. I also don't work full time (not enough focus/concentration/energy/motivation/pressure) for it so if I don't have a deadline or meeting, I can just take a nap, take a walk or do other things and I'm not glued to a job/office for 8h per day.
I also have savings and a good wife, so there's never any "sadness" depression (Serotonine?), there's always only the "lethargy/drive" depression (Dopamine?).

(Although CFS people also have their ups and downs and phases.. and I have the post exercise malaise.. hmmm... maybe strong CFS hits more women...)



berlin1984

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Re: Berlin1984's thread
« Reply #1 on: March 21, 2021, 02:16:26 PM »
This is my protocol I had until maybe February 2021.

I'm nowadays more experimenting with adding pre-packs (cetirizine+quercetin+Indometacin+cromolyn sodium+mangostin)

I'm also experimenting with Saffrol+Gingko as anti-depressant, seems with good effects.

(I gave up st john's wort because of slow gut motility)

I love Ashwagandha and Rosea Rhodiola.

Since there was confusion in another thread, here my personal protocol that lets me manage 70% (but not fix) (EDIT: With addition of tribulus and no more chronic coffee, goes up to >90% for sex-but-not-masturbation-orgasm) my POIS

Those are my MUST:
* Do not masturbate, only sex with real partner. (was proven in another thread that most/all people have less problems with sex than with masturbation)
* Do not have orgasm more than every 3 days, ideally less.
* Sex 1-2h before sleep only, not during day
* Morning after (actually probably each day, takes some time for effect) take
 * B Complex (active forms of vitamins ideally?)
 * Magnesium
 * L-Theanine
 * Ashwagandha extract,
 * Rosea Rhodiola extract.
 ^ Those herb extracts are synergistic, you need them both IMHO.
 * Passion Flower extract
 * On mornings-after where I need to perform socially, I also take passion flower extract.
EDIT November 2020: Tribulus Terestris is awesome. Take it additionally!

Those are my PROBALBY HELPS:
* Ginger tea
* Black chocolate
* If you have weakness or constipation during the day, take Iberogast.
* I also try to get vitamin C
* I also often eat dried physalis recently

This fixes (mostly):
* All brainfog
* All lack of resistance to stress
* Light sensitivity
* Hate for social situations

This does NOT fix (or only improve):
* The pain I experience on morning waking up. It used to be a lot worse before though, also with stiffness. In my belief, this is caused by bacteria growth (triggered after O) and/or activation of latent virus.
** Improves after taking a strong coffee and hot/cold(alternating) shower. Feels like pain is being flushed away.
EDIT November 2020: Chronic coffee consumption is bad for other reasons.
* The fatigue that hits me usually at 18:00 on the day-after-sex. So basically it does not fix my day-after-in-evening-iinability-to-stand-and-want-to-lie-on-couch. (Sometimes helped by Iberogast or sublingual NADH). EDIT: With addition of Tribulus Terestris, I think this is fixed too. If not then B-Vitamins and Choline help.
* I more and more believe I have a kind of CFS/POTS (on all days unrelated to orgasm), somehow related to Norepinephrin or virus/infections.

My positive lookout for future:
* I'm currently taking two antibiotics/antiparasitals, let's see how I feel after EDIT: Did not help
* If that does not help, I will check for doctors specialized in CFS.
* Or I will go without doctor talking first and check for reacticated virus.

EDIT November 2020: If I really need to perform on the next days, I take Niacin 200mg with flush and 25mg Diphenhydramin and 5mg Loratidin before orgasm, with down with a lot of water, then wait the 20-50 minutes for niacin flush to occur. It improves day after symptoms but does not completely remove them. I don't think chronic usage of niacin or antihistamines is healthy.

Hopeoneday

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Re: Berlin1984's thread
« Reply #2 on: April 26, 2021, 05:47:15 AM »
Hello Berlin, I am very glad for you and your situation, I am glad that you are lucky in life.
Because with a difficult pois and cfg it is very difficult to find a girl who will understand (she would have to understand and bear the great burden of a relationship and marriage), start a family, start a business, keep a good job.
A lot depends on the happiness and the country in which you were born.

I have been planning to come to Germany for 5 years to work for a long time, but my difficult POIS together with difficult
CFS has kept me from progress for almost my whole life.

So I couldn't be diagnosed with CFS in Germany either?
If I could get a diagnosis, maybe I could find some “easy” job that I could
deal with POIS and CFS.
The last time I was in Germany was 18-20 years ago,
when I was full of optimism and hope as a young man starting my own small car business ...
but then slowly POIS CFS took away my opportunities for progress in life.
« Last Edit: April 26, 2021, 05:55:40 AM by Hopeoneday »
Dr-pois.

Journey

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Re: Berlin1984's thread
« Reply #3 on: April 26, 2021, 07:23:22 AM »
I already have had POIS since puberty so already before I had even became an adult I started having difficulties with achieving my full social/study/intellectual potential because of POIS brain fog and fatigue

I turn 20 in June

EDIT: Remove quote
« Last Edit: April 26, 2021, 01:52:44 PM by berlin1984 »

Cursed

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Re: Berlin1984's thread
« Reply #4 on: April 26, 2021, 11:34:59 AM »

So I couldn't be diagnosed with CFS in Germany either?

Germany is one of the last places you would want to go for CFS diagnosis or treatment. Germany is like most eastern Europe countries, where ME/CFS is considered non-disease and is usually diagnosed as somatoform syndrome/somatization.

Hopeoneday

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Re: Berlin1984's thread
« Reply #5 on: April 26, 2021, 11:54:50 AM »
Yes, I'm just reading now and I can't believe it. About 300 thousand patients in germany only from CFS ..
Then, the more I go west, the more I come to the east as far as medicine is concerned :). Conventional medicine seems to be the same everywhere.

Maybe with covid 19 something changes, but who knows how much time will pass, how much I can explore,
immunity and gut-microbiome are involved in CFS.
Dr-pois.

berlin1984

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Re: Berlin1984's thread
« Reply #6 on: April 26, 2021, 02:23:14 PM »
Hello Berlin, I am very glad for you and your situation, I am glad that you are lucky in life.
Because with a difficult pois and cfg it is very difficult to find a girl who will understand (she would have to understand and bear the great burden of a relationship and marriage), start a family, start a business, keep a good job.
A lot depends on the happiness and the country in which you were born.

I have been planning to come to Germany for 5 years to work for a long time, but my difficult POIS together with difficult
CFS has kept me from progress for almost my whole life.

So I couldn't be diagnosed with CFS in Germany either?
If I could get a diagnosis, maybe I could find some “easy” job that I could
deal with POIS and CFS.
The last time I was in Germany was 18-20 years ago,
when I was full of optimism and hope as a young man starting my own small car business ...
but then slowly POIS CFS took away my opportunities for progress in life.

I really regret now calling it "CFS" because reading about your situation (also previously in forum and situation of others) I indeed have it much better and easier.
Maybe I should call it "problem with energy production mixed with a certain kind of lack of motivation depression"?

I'm indeed lucky to be born in Germany and I'm also lucky I had parents who pushed me to go to school and then to university (I'm the first one to go to university in my family, my parents had mid/lower education only). This lead me to a position of job where I can do basically everything remotely.

What brought me in a lot of trouble (sturborness) also helped me with school and work I guess (=> ability for problem solving). This maybe also leads to my attitude that my health issues I can solve myself (after dissapointment with different doctors) by just finding the right life style choices and the right supplements.

Side story: A woman/girl I know in my age has "real" CFS (the women version, CFS is more likely in women) and I asked her: "What about simple meaures like taking a Vitamin B complex pill or mitochondrial supplements like Q10 or Carnintine"?
She: "I don't know. I never tried those. My doctor and the media said i'm unlikely to have a deficiency, I have a varied diet"
THIS IS BAFFLING TO ME. I probably tried 50+ different supplements because of my "can do" engineer attitude and she has not even tried the most basic thing which you can get at every bigger grocery store in the world?

(Please don't anyone take this personal please, this is just my view of things. There's a reason one of the forum threads here is called: Vitamin supplementation WORKS - start taking them!

Regarding finding a girl: Best is to find someone who is also introverted (my wife is) so the flow in the relationship is the same.


What I should mention also: In the last years (many years) I almost never felt sad or sad-depressed. I can feel lethargic. I can feel post-POIS pain or post exercational malaise. I can feel super unmotivated. I can feel brain foggy. But never sad.
 I had periods in life where I was feeling really sad depressed very often and for long times. I thought life was bad, I'll never find my love, I'm not attractive etc etc. I was driving people away with my self pity.
I don't really know/when this stopped. For sure my diet must have improved or some gut bacteria might have changed.
BUT... I also had several trips with magic mushrooms (psilocybin) over the years when I was maybe between 24 and 30. I also took LSD maybe 3 times.
So draw your own conclusions from that please, in a safe setting this probably changed my life :-)

(In general because of differences with dopamine etc,  I feel a lot of POISers are keen for drugs. I tried Amphetamine, Ketamine, I used to love alcohol etc. But magic mushrooms are different, they are more for feeling yourself and feeling nature, they are not for going for that extroverted party dancing action. Nowadays I don't even drink alcohol anymore, I get hungover very easily (CFS symptom?) and I'm a family guy now)

Germany is one of the last places you would want to go for CFS diagnosis or treatment. Germany is like most eastern Europe countries, where ME/CFS is considered non-disease and is usually diagnosed as somatoform syndrome/somatization.

Or as some kind of depression?
When I was at urologist once and explained him POIS, he said he can't find this disease in his books/system so he cannot do anything for me (errrr  ::) ) but asked me to take a self-paid vitamin D test.. I was with low vitamin D, but as we all know from this forum this is just one part of our phenotype, you can't fix POIS with it.

When I was at a Heilpraktiker she diagnosed me with underlying infections. This sounds more likely for POIS...

berlin1984

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Re: Berlin1984's thread
« Reply #7 on: May 12, 2021, 12:29:02 PM »
Saffron experiences:
I have to say that Saffron (Affron©)  is the single best supplement I discovered in the last year. (thanks!)

It improves my orthostatic intolerance like feeling by a lot. I have less need to sit down with it. It also improves motivation/drive and improves the gut transit.

But I need to remember to take it consistently.
I stopped taking it for a while and took another supplement containing a bit of Saffron. On one day in the morning, I could barely keep standing, had to lie down again. Tried my other hacks (drinking more water, drinking alcohol free wheat beer, eating salty stuff) and they didn't work. Until I remembered the saffron. Took one dose and after half an hour I was completely fine again. I could stand, walk, didn't feel weak etc.

It's not perfect yet though.

Maybe I should try to combine it with Ashwagandha again which I stopped because after some weeks it leads to heart palpitations. Hm.
By the way, Ashwagandha extract inhibits acetylcholinesterase.

berlin1984

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Re: Berlin1984's thread
« Reply #8 on: May 27, 2021, 09:53:36 AM »
I don't feel good at all today. Headache, weakness, brain fog ...

I started Milnacipran ca 6 days ago. (still doing Safran, Ashwagandha).

The can-not-stand-and-need-to-sit-down feeling that normally goes OK after eating salty snack + sugary isotonic drink did not go away.

Now I read on the internet that Milnacipran and SSRIs/SNRIs can create salt deficiency (sodium deficiency, hyponatremia)

https://www.hilarispublisher.com/open-access/use-of-milnacipran-in-a-patient-with-hyponatremia-under-the-cover-of-fludrocortisones-2165-7920.1000308.pdf

I feel slightly better after taking an electrolyte mix and also taking some salt separately.  :-\
I won't take the second 25mg Milnacipran dose today.


EDIT some days later:
I'm taking it because I thought it could help my orthostatic intolerance. I told the doctor that Safran and Ashwagandha (and salt and fluids) already help but I want to try something stronger.
I asked for an antidepressant, he reluctantly wanted to give me another one but I managed to get Milnacipran because I was thinking about the forum here and thought maybe it also fixes POIS  ;D
I think he has no idea about orthostatic intolerance (I did not use this word to describe it) actually.

I am trying to take it daily 25mg.
I had only one trial orgasm where I took an additional 25mg 2h before masturbation.
To be honest it does not change my POIS problems on day after (pain/anxiety when waking up, superb fatigue in evening after) much. At this moment, at least the pain clears up nicely with coffee and the anxiety with Aswgagandha and Safran.

So I don't think Milnacipran will be so useful to me.
I'm now more thinking of getting this doctor to prescribe me propranolol. I'll follow up in the relevant thread, might take some time because I'm also evaluating other things :-(

I'm even at a point where I say POIS is only a minor part of my problems, if I can fix the big problems then POIS might fix automatically with it or is easily manageable for me.

berlin1984

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Re: Berlin1984's thread
« Reply #9 on: June 17, 2021, 09:56:52 AM »
Of course I came back to coffee since I last posted about it :-(

Now I managed to give it up again (for ca 3 weeks now) and feel much better.
Less stress feeling, less mood swings, less orthostatic intolerance...

I'm also taking daily B1 high dose, magnesium, B complex normal dose, taurine, creatine, safran. (I also take the ingredients of ParaSym Plus individually, but i don't think it has a big effect)
If I keep my electrolytes up (powder, salty food) and stay hydrated (already drink a bit when getting up in morning, I got a bottle next to be the bad), I have no more orthostatic intolernance.. I have a crash at 17:00, but since I can work from home it's not a problem to take a quick nap then...

I'm not taking Ashwagandha anymore, I think it has too many side effects if taken chronically. But as one-off pill it is probably good. (Internet recommendations are to "cycle" it)

My POIS from sex is also much better. I will post my current pre-pack another time, but a lot of the suggestions in the forum here were useful.
Recent addition is to eat a banana after sex and also in the morning after (thanks Quantum for mentioning Potassium so often), I think it helps.

Maybe remaining is headache on the day 3, which I think is caused by gut bacteria creating flatulence in evening on day 2 (with day 1 being the orgasm day).

POIS after masturbation is still not so good. Might be hard to cure... :-\

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Re: Berlin1984's thread
« Reply #10 on: June 18, 2021, 05:22:24 AM »
I'm not taking Ashwagandha anymore, I think it has too many side effects if taken chronically. But as one-off pill it is probably good. (Internet recommendations are to "cycle" it)

What are the side effects? Have you experienced them yourself, or read about them? Curious as I'm taking it myself at the moment. Thanks. :)

Journey

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Re: Berlin1984's thread
« Reply #11 on: July 29, 2021, 03:13:34 PM »
I'm not taking Ashwagandha anymore, I think it has too many side effects if taken chronically. But as one-off pill it is probably good. (Internet recommendations are to "cycle" it)

What are the side effects? Have you experienced them yourself, or read about them? Curious as I'm taking it myself at the moment. Thanks. :)
If used too long too much without cycling it then it can lower cortisol too much causing fatigue/lethargy type of state and might give high serotonin by changing the serotonin receptors

berlin1984

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Re: Berlin1984's thread
« Reply #12 on: August 01, 2021, 01:30:20 PM »
I can confirm Quantum's pre-pack works quite good for me.
Small changes I did is take tomatoe sauce instead of lycopene and I took different forms of some of the other supplements mentioned.
I also added some zinc, SaltStick (electrolyte pill), half a cetirizine and more mast cell related stuff.

Post pack after waking up next morning: To make the next day even more stable mood wise, I took some of my additional go-to supplements (Maca, Ashwagandha, Rosea Rhodiola, Magnesium, silymarin, ...) and life style decisions (Coffee, Hot shower in morning, take a walk after getting up, try to eat more often to keep blood sugar stable).

So for normal sex orgasm, this stack is great for me. (tried twice).

For masturbation, I don't know yet (I get much worse symptoms there usually)

berlin1984

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Re: Berlin1984's thread
« Reply #13 on: August 01, 2021, 01:36:38 PM »
If I keep my electrolytes up (powder, salty food) and stay hydrated (already drink a bit when getting up in morning, I got a bottle next to be the bad), I have no more orthostatic intolernance..

I found a salt supplement which is easy to take and works very well.
https://saltstick.com/pages/vitassium
(There is also a non-POTS version which has some other minerals too)