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Frontotemperal disorder?

brain health brain disease mystery disease cfs mcs

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#1 Krane

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Posted 14 May 2018 - 09:32 PM


I have been plagued since around the age of 10 with -MCS (multiple chemical sensitivity) and CFS (chronic fatigue syndrome).

 

BUT

Since 2013, at the age of 23, I have had my world flipped upside down.

I have been consumed with:
-Altered state of consciousness

-Severe brain fog

-Incoherence

-Aphasia

-Confusion

-Personality withdrawal

Before this, I feel as though I was gifted in language, creativeness and had a pronounced astuteness.
I have been operating at about 5-20% (20% are my best days) of that capacity and I have just been trying to survive through life and work.

Could this be Frontotemporal Dementia? Has anyone else heard of such a combination of symptoms?

 

I've gone to doctors, but it never amounted to anything and after a while of going out of my way to make appointments and go do tests, I gave up trying because of how much it'd take out of me.

I felt doomed and for a long stretch of time, I self-medicated with alcohol. It would help me escape a bit but it contributed to worsening my health and symptoms.

I haven't drank in a year.
I haven't been working.
I have been running (I'm slow AF but consistent)
I have a clean diet.
I have a good sleep hygiene.
I take a list of dietary supplements.

STILL NO IMPROVEMENT.

I can't continue living like this...I am unable to connect with anyone, I have extreme struggles working, and in short my quality of life is very poor.

Any advice would be greatly appreciated.

PS. I am taking the following supplements in case anyone is curious.
 

Selenium - 200mcg 1x/day
Folinic Acid - 800mcg 1x/day
Vitamin C chews - 500mg 1-4x/day
NOW Super enzymes - 1x/day with biggest meal of day
Vitamin b12 - 2.5g sublingual 1x/day
Magnesium Citrate - 130 mg 2x/day
Magnesium Threonate - 1x/day
L-Carnitine -  500mg 1x/day
Orange triad multivitamin - 1 pill 2x/day (hypersensitive to lipid soluble vitamins)
NOW Liver refresh - 2x/day
CoQ10 - 100mg 2x/day
NOW Fish oil - 1g 2x/day
NOW Brain elevate (Ginkgo, etc...just started) - 1 pill 2x/day
BCAA powder - 5-15g per day (depending on exercise)
Plant protein powder - 20g prot 2x/day
 


#2 Muad'Dib

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Posted 19 May 2018 - 06:44 PM

Had similar problems in the past but with bunch of other symptoms excluding
multiple chemical sensitivity.
Dihexa did wonders for me. It toke a considerable mount of time before my symtomps improved. I toke dihexa for 4 month about 50mg daily sublingual 4 times with 4 months breakes in between. After a while on it each time my frontal cortex(higher order thinking skills) shut down partly but linear and lasting improvment could be felt. Toke also about 3g cinnamon ceylon daily to counter the hypo function resulted from dihexa with some posetive results.
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#3 tunt01

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Posted 19 May 2018 - 06:50 PM

1.  Take salicylic acid/salsalate and nicotinamide riboside in the AM upon wake with green tea.

2.  Exercise in a fasted state around noon to 3 PM.

3.  Eat 1 large meal a day after exercising around noon to 3 PM.

4.  Have a small salad or snack no later than 5 PM.

 

Maintain an 18 hr fasting window daily for at least 2 weeks and see how you feel.

 

This process will address tau mediated frontotemporal dementia.


Edited by tunt01, 19 May 2018 - 06:52 PM.

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#4 Krane

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Posted 19 May 2018 - 07:23 PM

Had similar problems in the past but with bunch of other symptoms excluding
multiple chemical sensitivity.
Dihexa did wonders for me. It toke a considerable mount of time before my symtomps improved. I toke dihexa for 4 month about 50mg daily sublingual 4 times with 4 months breakes in between. After a while on it each time my frontal cortex(higher order thinking skills) shut down partly but linear and lasting improvment could be felt. Toke also about 3g cinnamon ceylon daily to counter the hypo function resulted from dihexa with some posetive results.

 

Thanks so much for the information, Muad. I will research some of these solutions!

 

1.  Take salicylic acid/salsalate and nicotinamide riboside in the AM upon wake with green tea.

2.  Exercise in a fasted state around noon to 3 PM.

3.  Eat 1 large meal a day after exercising around noon to 3 PM.

4.  Have a small salad or snack no later than 5 PM.

 

Maintain an 18 hr fasting window daily for at least 2 weeks and see how you feel.

 

This process will address tau mediated frontotemporal dementia.

 

To note: I can't consume any caffeine.

Aside from that, Great information here. 

I have found some of this myself in recent research. Tau is a type of protein IIRC...one that may be clogging my brain and other functions.

As such I need to find ways for my body to better regulate; to reach homeostasis and proper flow.

 

In the week or so leading up to me finding this forum and making this post I have made some changes to my diet: 

-More time in fasting

-Significantly less carbohydrates (none at night aside from salad)

 

With having made the above changes along with the new supplements I've been using in the past week:

(CoQ10 - 100mg 2x/day, NOW Brain elevate - 1 pill 2x/day, BCAA powder - 10-20g/day),
I have been noticing a difference in my energy levels: I feel it most from the BCAA powder, and it has improved my running endurance as monitored on my Garmin watch.
And memory: I attribute to the additional energy mentioned above plus NOW Brain Elevate + additional Ginkgo 60mg to make the Ginkgo combined 120mg per serving twice daily.
 
There is still a ton of room for improvement, but I'm just glad that I'm starting to feel SOME difference. It feels like I might be on the right path. 
One of my biggest fears however is that I have had periods in the past where lasting up to two weeks where I had this clarity and change, only for it to just revert right back for another year or more.
That is one of my biggest fears.

I'll take a further look at your suggestions.


#5 tunt01

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Posted 19 May 2018 - 07:43 PM

Stop taking CoQ10 and fish oil.  Both are shit.

 

Rest is probably OK, although I question how much you are getting in some of these vitamins (too much) when you take whatever that multivitamin is plus the individual vitamins (folate, selenium, etc.).  That plus food may be overdoing it on a combined basis.

 

EDIT:

 

Fish Oil Shortens Lifespan In Long-Lived Mice.

https://www.ncbi.nlm...les/PMC4082564/

Spindler, S., Mote, P., & Flegal, J. (2014). Dietary supplementation with Lovaza and krill oil shortens the life span of long-lived F1 mice. AGE36(3). doi:10.1007/s11357-014-9659-7

 

Similar shortened lifespan in CoQ10 supplementation.  Post your contrary data.


Edited by tunt01, 20 May 2018 - 12:48 PM.

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#6 Galaxyshock

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Posted 20 May 2018 - 01:03 PM

Try dual-extracted Reishi mushroom



#7 Krane

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Posted 28 May 2018 - 07:15 PM

Yeah everything is right back to the way it was before :-/

 

I can't live like this, I'm sensitive to everything and I'm totally spaced out, rather incoherent, can't seem to access any personality.

Though we've already spoken about Tau, I just wanted to continue with my hypothesis of me having some type of Neurodegenerative Disease.

 

I kind of feel stuck. I am to start working in 3-4 weeks for some of the most mentally and socially demanding positions I have ever worked for, move to a massive city, all on my own, while having such difficulty thinking clearly or being on the same wavelength as others (spacing). I'd almost say that the social aspect is one of the worst...I like literally feel extremely off talking to people, like the speed in which we speak, the tone, what to say, along with the fact that I have severe brain fog.

Doctors here aren't very helpful and I've been fighting this same fight for 5 years for the neurodegen symptoms and even longer with all the other also debilitating symptoms I have. 



#8 Muad'Dib

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Posted 28 May 2018 - 07:29 PM

Have you tried zink mono-therapy?
Give also antixoidants a try, like r-ALA,Gingko and NAC.
A piece of advice is dont give up. Try out everything that you think can help you, which is safe in a systematic approach.

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#9 Krane

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Posted 29 May 2018 - 01:14 AM

Have you tried zink mono-therapy?
Give also antixoidants a try, like r-ALA,Gingko and NAC.
A piece of advice is dont give up. Try out everything that you think can help you, which is safe in a systematic approach.

Thanks for replying, Muad. It's been a rough day what with the last few days having regressed back. Makes you lose hope every time, literally scrambles my brain and turns me into a zombie.

Anyways, as far as the supps you mentioned, I am actually taking Ginkgo, 120mg twice per day. I'm really not familiar with the other ones you had mentioned...I'll have to look them up.





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