Author Topic: My POIS symptoms  (Read 463 times)

Kit

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My POIS symptoms
« on: September 07, 2020, 06:12:54 PM »
Hello again. I have POIS with chronic muscle pain, uncomfort in the chest when I swallow food, difficulty tolerating intense exercise, and heat intolerance. All these problems involve palpitations that I can hear.  I’ve passed every blood test my doctor has thrown at me except for the vitamin d 25-hydroxy test. I’ve only gotten referrals for physical therapy and pain management. I requested a referral to see neurology, but my doctor and clinic denied it. It’s been quite difficult to put my focus on each problem individually while focusing on the rest of my life. Does any one know what could be wrong with me chronically aside from POIS?

Muon

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Re: My POIS symptoms
« Reply #1 on: September 07, 2020, 06:43:59 PM »
Abnormal mast cell responses? That's just one of the many theories.

Journey

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Re: My POIS symptoms
« Reply #2 on: September 08, 2020, 03:17:24 AM »
Test VitD
INTP, 19 y.o. aware of POIS since 2019 when realized by abstaining that O/WD gives POIS, likely had it since puberty, fatigue, brainfog, clumsier, slower thinking/processing, voice volume goes down, sometimes harder to look in eyes, lower stamina/strength

mardi

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Re: My POIS symptoms
« Reply #3 on: September 08, 2020, 06:53:48 AM »
Hey Kit, I have symptoms similar to yours.
Have you ever thought about trying an emg exam? Vitamin D deficiency could mean, as in my case, the possibility of spasmophilia. Try it, even privately: in Europe it costs a maximum of € 150-200. moreover there could also be endocrinological problems (I am also following this path).

In your case, are the symptoms chronic or they appear only after orgasms and then disappear?

Journey

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Re: My POIS symptoms
« Reply #4 on: September 08, 2020, 09:09:02 AM »
Hey Kit, I have symptoms similar to yours.
Have you ever thought about trying an emg exam? Vitamin D deficiency could mean, as in my case, the possibility of spasmophilia. Try it, even privately: in Europe it costs a maximum of € 150-200. moreover there could also be endocrinological problems (I am also following this path).

In your case, are the symptoms chronic or they appear only after orgasms and then disappear?
Spasmophilia deplete VitD? I had sleeptime contraction seizures when young that antiepileptics cured, don't take anything anymore.
INTP, 19 y.o. aware of POIS since 2019 when realized by abstaining that O/WD gives POIS, likely had it since puberty, fatigue, brainfog, clumsier, slower thinking/processing, voice volume goes down, sometimes harder to look in eyes, lower stamina/strength

Kit

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Re: My POIS symptoms
« Reply #5 on: September 08, 2020, 05:30:36 PM »
Abnormal mast cell responses? That's just one of the many theories.
Wow, I’m not getting any ideas but who can diagnose something like that. I am currently seeing one doctor from the “POIS doctors” list you have here but not for the other symptoms I mentioned.

Kit

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Re: My POIS symptoms
« Reply #6 on: September 08, 2020, 05:31:48 PM »
Test VitD
I’m currently taking Vit D 50,000 units every week with vitamin K2.

Kit

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Re: My POIS symptoms
« Reply #7 on: September 08, 2020, 05:36:13 PM »
Hey Kit, I have symptoms similar to yours.
Have you ever thought about trying an emg exam? Vitamin D deficiency could mean, as in my case, the possibility of spasmophilia. Try it, even privately: in Europe it costs a maximum of € 150-200. moreover there could also be endocrinological problems (I am also following this path).

In your case, are the symptoms chronic or they appear only after orgasms and then disappear?
The symptoms I listed above are chronic. Although, I still experience POIS brain fog, muscle tension, anxiety, and depression but those symptoms subside after a few days.

Kit

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Re: My POIS symptoms
« Reply #8 on: September 08, 2020, 05:38:19 PM »
Thanks for the responses everyone!

Muon

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Re: My POIS symptoms
« Reply #9 on: September 08, 2020, 06:20:30 PM »
Abnormal mast cell responses? That's just one of the many theories.
Wow, I’m not getting any ideas but who can diagnose something like that. I am currently seeing one doctor from the “POIS doctors” list you have here but not for the other symptoms I mentioned.

Most countries don't have the proper toolset to investigate this. Patients got chronic non-specific multisystem symptoms inflammatory in nature and often provoked by triggers. You will need big picture analyses. Here is are some threads about it:

https://poiscenter.com/forums/index.php?topic=3236.0

https://poiscenter.com/forums/index.php?topic=3396.0

Different receptors on mast cells can be targeted by trial and error because it can behave via tons of different pathways from person to person. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3318920/table/T1/

Many of the things which were a success to POISers in literature and on this forum can actually interact with mast cells. And it's possible one will need to target multiple receptors and end up with a personal 'stack'.

berlin1984

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Re: My POIS symptoms
« Reply #10 on: September 09, 2020, 02:28:01 AM »
Hello again. I have POIS with chronic muscle pain, uncomfort in the chest when I swallow food, difficulty tolerating intense exercise, and heat intolerance. All these problems involve palpitations that I can hear.  I’ve passed every blood test my doctor has thrown at me except for the vitamin d 25-hydroxy test. I’ve only gotten referrals for physical therapy and pain management. I requested a referral to see neurology, but my doctor and clinic denied it. It’s been quite difficult to put my focus on each problem individually while focusing on the rest of my life. Does any one know what could be wrong with me chronically aside from POIS?

I think I have similar symptoms to you. Standard blood tests are also OK for me except vitamin d.
I was at neurologists some years ago and they didn't find anything.

My recommendations:
* Go to a dentist to check for gum disease. This is where I have problems.
* Maybe try my protocol (see my signature) with adaptogens? Prescription free.. (Disclaimer: Investigate first, don't just buy and take!)
* Maybe try low dose vitamin d sublingual instead of pills to swallow?
* Try to cut out the chronic consumption of things that mess with hormones/neurotransmitters (alcohol, coffee, ...)
* Maybe try to get Milnacipran as it's supposed to help for Fibromyalgia too. (Do you have low drive / motivation too?) (I haven't tried this approach yet, but it will be next on my list)
« Last Edit: September 09, 2020, 02:30:04 AM by berlin1984 »
Please vote on: https://poiscenter.com/forums/index.php?topic=3386.0
(There's real science behind it, not Astrology..)

My Protocol

Kit

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Re: My POIS symptoms
« Reply #11 on: September 09, 2020, 07:08:49 PM »
Hello again. I have POIS with chronic muscle pain, uncomfort in the chest when I swallow food, difficulty tolerating intense exercise, and heat intolerance. All these problems involve palpitations that I can hear.  I’ve passed every blood test my doctor has thrown at me except for the vitamin d 25-hydroxy test. I’ve only gotten referrals for physical therapy and pain management. I requested a referral to see neurology, but my doctor and clinic denied it. It’s been quite difficult to put my focus on each problem individually while focusing on the rest of my life. Does any one know what could be wrong with me chronically aside from POIS?

I think I have similar symptoms to you. Standard blood tests are also OK for me except vitamin d.
I was at neurologists some years ago and they didn't find anything.

My recommendations:
* Go to a dentist to check for gum disease. This is where I have problems.
* Maybe try my protocol (see my signature) with adaptogens? Prescription free.. (Disclaimer: Investigate first, don't just buy and take!)
* Maybe try low dose vitamin d sublingual instead of pills to swallow?
* Try to cut out the chronic consumption of things that mess with hormones/neurotransmitters (alcohol, coffee, ...)
* Maybe try to get Milnacipran as it's supposed to help for Fibromyalgia too. (Do you have low drive / motivation too?) (I haven't tried this approach yet, but it will be next on my list)
Hello Berlin, thanks for the recommendations! I will be seeing a dentist soon so that’s on my list. The only drinks I have are water, unsweet silk milk and fruit smoothies with no added sugars. Yes I have low motivation/drive quite often! Do you suspect you have fibromyalgia?

Kit

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Re: My POIS symptoms
« Reply #12 on: September 09, 2020, 07:33:07 PM »
Hey Kit, I have symptoms similar to yours.
Have you ever thought about trying an emg exam? Vitamin D deficiency could mean, as in my case, the possibility of spasmophilia. Try it, even privately: in Europe it costs a maximum of € 150-200. moreover there could also be endocrinological problems (I am also following this path).

In your case, are the symptoms chronic or they appear only after orgasms and then disappear?
Hi again Mardi. Are you diagnosed with spasmophilia? If so, how are you managing it?

mardi

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Re: My POIS symptoms
« Reply #13 on: September 10, 2020, 04:47:45 AM »
 I have POIS for about 15 years. 4 years ago the symptoms worsened strongly, so I decided to investigate further, and after consulting several doctors and after having done several tests, I took the EMG test, three times. All three times the result was positive. Diagnosis: latent normocalcemic tetany (aka normocalcemic spasmophilia). Symptoms: fasciculations, exhaustion, brain fog, dry skin, stomach upset, red eyes, chvostek sign. The same symptoms I have after orgasm.

Now, I don't think POIS is 100% reducible to spasmophilia: surely there is something more that causes us these horrible symptoms. However, I am convinced that there is a strong link with spasmophilia, and in particular with a neurological system disorder due to poor absorption of minerals by cells.

I would like to know how many poisers are EMG positive, but it looks like no one here has ever done it, except me.
It seems to me that too many people here focus on treating symptoms through unnecessary vitamin concoctions, and not on finding the causes (no offense to anyone)  ;)

Journey

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  • INTP, 19 y.o. aware of POIS since 2019
Re: My POIS symptoms
« Reply #14 on: September 10, 2020, 06:58:59 AM »
I have POIS for about 15 years. 4 years ago the symptoms worsened strongly, so I decided to investigate further, and after consulting several doctors and after having done several tests, I took the EMG test, three times. All three times the result was positive. Diagnosis: latent normocalcemic tetany (aka normocalcemic spasmophilia). Symptoms: fasciculations, exhaustion, brain fog, dry skin, stomach upset, red eyes, chvostek sign. The same symptoms I have after orgasm.

Now, I don't think POIS is 100% reducible to spasmophilia: surely there is something more that causes us these horrible symptoms. However, I am convinced that there is a strong link with spasmophilia, and in particular with a neurological system disorder due to poor absorption of minerals by cells.

I would like to know how many poisers are EMG positive, but it looks like no one here has ever done it, except me.
It seems to me that too many people here focus on treating symptoms through unnecessary vitamin concoctions, and not on finding the causes (no offense to anyone)  ;)
How 2 fix spasmophilia? Mast cells might cause it
INTP, 19 y.o. aware of POIS since 2019 when realized by abstaining that O/WD gives POIS, likely had it since puberty, fatigue, brainfog, clumsier, slower thinking/processing, voice volume goes down, sometimes harder to look in eyes, lower stamina/strength