Sorry. I speak French as a first language and acronyms evade me. What is PAS ?
If there’s an hormone imbalance, a healthy cell will receive the signal to produce hormones that are not needed. The hormones are signals telling cells what to do. We have two systems doing that: the nervous system and the Hormone system (the endocrine system) and they work in tandem.
I think it’s more of an endocrine imbalance but we cannot rule out there is actual cell damage.
(actually there is an autoimmune response destroying healthy cells deemed to be unneeded in the new balance that was formed by fin or the withdrawal of it)
Post Accutane Syndrome. No one ever told me benzos are supposed to be short- term only. I found out myself on Wikipedia after taking them daily for 4 years.
@Ozeph - What do you mean “actually there is…”?? Is there proof there is an autoimmune issue that’s destroying healthy cells?
Well, unless I just don’t get it, guys whose genitals are shrinking massively are losing cells. I mean if you had balls big as eggs and now they’re the size of grapes, some cells must have been lost.
The immune system eating used up cells and sick ones is normal. When it attacks healthy ones, it’s an auto immune disease.
It doesn’t mean it happens to all of us. And it can also be reversible. New cells can be added and grape sized balls can become egg sized again. That’s what happens during puberty.
Yeah ! Doctors prescribe them long term like it’s nothing.
I’ve been on .5mg clonazepam for 3 years now. I start to notice withdrawal symptoms after not using it for 3-4 days at even this small of a dose.
When did you get PFS?
Not sure if you’re asking me but if so I’ve had it since 2013/14
I’ve been on clonazepam 4.5mg a day, single dose at bedtime, for a year. I will stop today and try to prevent withdrawal symptoms by following this protocole:
1mg clonazepam and 300 mg Gabapentin before bedtime for the first night, then 300 mg Gabapentin every 8 hours.
Second and third night will be 0.5mg clonazepam and 300 mg Gabapentin before bedtime, then 300 mg Gabapentin every 8 hours.
Fourth and fifth night will be 0.25mg clonazepam and 300 mg Gabapentin before bedtime, then 300 mg Gabapentin every 8 hours.
Then I will stop clonazepam and take Gabapentin every 8 hours for 9 days.
I may (and probably will, 4.5 mg is a lot to detox from) Increase Gabapentin to 450 mg every 8 hours if I have symptoms of withdrawal. I can also take 0.25mg Clonazepam as needed during the process if cravings are too strong.
I’ll see if Pregabalin does better afterward. It’s very similar to Gabapentin and can be switched overnight.
Is there any way at all to measure our GABA and Glutamate or the balance?
Pregablin is Lyrica right?
FYI there is an antibody test for GAD antibodies. Mayo Paraneoplastic Panel. Your neurologist can order this and the labs would be drawn and sent to Mayo.
Yes it is. Pregabalin is the substance, Lyrica is the brand.
Gabapentin goes by Neurontin, Gralise, Gabarone, Fanatrex in the US
Day 195 of Amino Acids Day 328 or carnivore / ketogenic diet and Day 2 Of Benzodiazepine Detox.
Sleep patterns have completely changed. I`m having 5/10 nights which keeps me going through the day.
The Benzo detox is going well, details here: Ozeph Detox from Benzodiazepine while having pfs but Gabapentin, the less dangerous, less addictive replacement drugs is quite a knock out. So far, no withdrawal symptoms and it looks like I`m having less of a hard time with Gabapentin.
I`m back to my regular amino, minerals and vitamins supplements, with the recent addition of 1 mcg of Lithium and 450 mg of Iodine. I eliminated vitamin B12 but taking more B3 and B6 (and lots of B8, like 5gr. before sleep)
I was worried about 5-HTP, and L-Dopa interacting with Gabapentin but it actually reduces Gabapentins side effects. I still take Tyrosine, between 750 to 1000 mg and its great for reducing mind fog.
All in all, Im definitely relaxed, not worried and I dont freak out when shit happens. This one year of pfs has been so weird ! Like I have been a different person so many times, with complete opposites. I`ve been aggressive, scared and anxious, overconfident, irritable, smooth and tolerant, a complete asshole etc…
Its a great experience to be able to see myself with so many different aspects. Also, it humbles me as of my abilities to control my moods, emotions and behavior. I can see its all hormone and neurotransmitter driven and I`m just a spectator of my own life, while acting it automatically.
In the end, Ive gained more compassion for others: ``everyones life is a long and difficult fight```
(That`s from Socrates. Not me)
I wish you the best to you all. You may not be aware of it, but this disease is also bringing you gifts.
Push aside the dirt and you will find the gems.
Day 197 of amino acids, Day 330 of carnivore / ketogenic diet and Day 4 of benzo detox.
Sleep is improving at 6/10 despite diminishing Benzo by 1/3 in 4 days.
I believe what got me into this mess is taking collagen after a motorbyke crash. I figured my Glutamate levels were high and suppressed GABA (or Glycine was high and suppressed, through one of its metabolites, the GAD enzyme which makes GABA and then Glutamate got high). Either way, I have list of things to do to promote GABA and lower Glutamate:
Take and do:
• Animal protein and fat to favor GABA and GAD (GAD is the enzyme that makes GABA)
• Ketogenic diet is exceptionally beneficial (damn I knew it helped)
• Mackerel has high GABA
• Eating Organic
• Taurine increase GAD and binds to GABA Rec.
• Magnesium (Also activates GABA Rec.)
• Zinc (no more than 40 mg)
• Probiotics
• Vitamin D (Easy on it)
• Vitamin K
• Vitamin B6
• Lithium
• Iodine
• Boron
• Chlorella Blue-Green Algae to detoxify
• 5-HTP or Trytophan
• Keeping blood sugar leveled
• Adequate Sleep
Don’t Take, Don’t do:
• Glycine, Collagen which is 30% Glycine and 10% Glutamate
• Glutamate
• Glutamine
• Cysteine
• Theanine
• Casein (Cheese)
• Aspartame (sweetener)
• MSG
• Calcium (be careful)
• Easy on Glutathione
• Beware of Candida guts and mouth infection
• Sugar, whole grain, Starch
• Caffeine, Chocolate
• Food that spikes Insulin
• Artificial flavor, color, sweeteners, additives.
• Pesticide, Herbicide, Heavy Metals , perfume, dish soap, laundry soap
• Benzodiazepine
• Hydrolyzed food, creamers, Yeast, Carragenine, Guar Gum or any Gum, Malt, Soy.
• Whey protein, Sport Protein Shake, Branch Chain Amino Acids.
• Processed Meat
• Tomato Juice
I checked and there still is 2.5 gr of collagen in the capsules of the supplements I’m taking. So now, whenever possible, I open the capsule and pour the powder in my mouth, Did this yesterday and today and saved me 2 gr. of collagen. It may not be much but it contributes.
When I can sleep better, I will resume taking my supplements normally.
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Day 331 of Carnivore / ketogenic diet. I’m slowly getting off this diet.
I believe the diet had immense benefits, akin to a cure for things like epilepsy, spam, anxiety and much more, including most of pfs neurological symptom… I believe it was also part of what made me recover fromm all sexual symptoms.
However, the first 6 months brings the most benefits and after stating to eat some healthy carbs, I saw an improve in sleep and, well, that’s it, it’s the only boo boo I have.
So I will slowly lower levels of saturated fat and meat and introduce elements that would fit a paleo diet:: colorful fruits, nuts, legumes and a wider variety of vegetables, especially colorful ones. I will still go easy on things like grains and soya, which have caused me troubles in the past.
Tomorrow will be day one of Paleo diet.
I will still take my amino, minerals and vitamins but will eat a wider variety of food. I will also increase exercise, in particular fast walking but will continue weight lifting.
What’s wrong with theanine?
What about libido?
It increases Glutamate, and excitatory neurotransmitter. Nothing wrong with it if Glutamate is at normal levels. I took it for months, whenever I had anxiety.