29 replies to this topic

[guybrush33]

Hi Guys !

 

My name is Guybrush Threep...ah forget about that. Well my name is Mat, im 30 years old and I come from Germany. I signed up because im stuck(6 months now) in a fairly puzzled - almost mysterious condition with my brain. I hope to find some people who can help me with their "know-how" and give me a little insight on whats going with me or help to rule things out (at least for the brain parts).

 

To make things more interesting i put in a 500$ reward that can be won by contributing to this thread and if things somehow get better for me i can happily give it away. <3 (Hope its not aginst the rules)

 

Emergency/panic Quit (cold turky obv) a drug cycle i was on for about 6 Months.

 

1. Testosteron Enantate ; 250mg/Week

2. T3 ; 25 mcg daily

3. Ketotifen ; 1-2 mg daily

4. berberine HCL 1 g -1.5g daily.

5. 4-5 cups coffee in fasted state over the day.

 

6 Months ago (April 2018) I woke up with a mild funky sound in my left Ear(sounds like soft morse-code inside my ear.). Also i had very short and mild attacks of vertigo(max 1 second; ENT told me thats caused by my neck) and feeling groggy'//stiff-neck-like as if i get a cold.

I gave myself few days to let it resolve by itself. My sleep Quality dropped day by day and my Anxiety got higher each day.I Decided to cold turky everything instead of slowly tappering off . Especially the Testosterone. I remember waking up one night and having a super ultra highpitched electrical feeling//sound//noise coming form my head. It was few days after i quit maybe the t3 or Ketotifen. i skipped next Testosterone injection and prepared for brain fog and Testosterone withdrawal. Went through pure hell next 8 weeks. Massive cognitive impairment in all aspects, time distortion, panic mode 24/7(everything scared me...lol...cold showers..blackcats.being alone , and manymore things) and emotional chaos. ~4 weeks insomnia. Went to the ER.They put me on benzo-depot for a week. A Psychiatrist then put me on Doxepin and Promethazin

to help fall asleep and preventing me from wakeing up. I quit the doxipil after a week because i was afraid of the sideeffects. I took the promethazin for about 8 weeks and tapperd it slowly off over a month. It helped me alot.

 

I have been to: -3 ENTS ; they found nothing special.

-neurologist ; he tested me for lyme and ordered MRI; found nothing

-END ; he found low t and low thyroid.(obv) He said: it will resolve and gave me recipe for neurofeedback.

 

Today: My brainfog and anxiety resolved nearly 100% . hormone levels got better too.

 

 

main-Symptoms today(they did not change alot):

 

This high pitched electrical "seems-more-like-a-feeling" sound coming from my head(ears?) It almost feels like cramping or pain expressed as sound.

-Super sensitive to sound and certain sounds are too loud. Also im afraid of sudden noises and have to take deep breath to relax. Everything is too loud in gerneral.

 

-Super sensitive to pain. Pain mainly coming from my left Ear/jaw for the most part; but certain sounds and movments can trigger a sharp stabbing pain. Constant jaw pain left side and overly and painful tight muscels on left side of my jaw.

 

-Unable to filter background noise.

-some white brainzaps mainly in the morning.

Had them awhile when  i was about to fall asleep too (red zaps) but they are gone.

 

-Selective hearing got worse. Whatever has more dB wins now.(I was able to hear very selective)

-Super sensitive to bright light . I also have dry eyes. When i wake up they are red for 1-2 min but clear after i blink alot and walk around.

 

I dont get tired anymore , i dont get that sleepy feeling even if i exhaust myself over the day . I just lay in my bed and get a knockout. (My sleep is good, well i wake up to take a piss often now but thats it).

 

-my whole body feels pretty dry. Skin ..nose..sinuses. Is this low histamin? Dehydration problem gneral? Aldosterone?

 

So i probably have at least 3 metabolic pathways running low? Testosteron, t3 and histamin?

My serotonin and dopamin pathways and ratio are probably out of whack too?

(I heared that sometimes the brain can have dopamin blockages resulting in sensory symptoms like phantomsounds etc...)

 

Important:

1:

1 or 2 Weeks before onset of the Symptoms i was to a dentist who made a filling in one of my teeth. Keramic with plastic glue. I was there initially because a wisdome tooth was hurting.(i reasoned the hormones induced some growing) The dentist said we should remove it but we could also wait until it grows out further.I didn't took it very serious (maybe a mistake) and said i wanna wait. Well it grew realy fast next few weeks.The wisdometooth is super long now.

So maybe this can be a possibility ?

 

2.

We got two Kittens a Year ago(when i started my cycle)

I had a lot of allergies 10 years ago but when i started intermitting fasting all resolved and i never had symptoms again. So we gave it a try to have kittens. Well i took ketotifen too but mainly for sleep and diet . Should we rule it out 100%? Is Toxoplasmose worth considering?

 

 

 

3.

 

the day before onset was very stressful ...i worked out hard in the gym and after that i got a stressful photoshooting in my car where i was constantly bending my head to the left and had forward head posture the entire time i was in the car. Then had epic refeed dinner with alot of sugar and some redwine. So it can maybe also be some blockage in my neck.

i read that teeth , upper neck and jaw misalignments can irritate the cranial nerves alot.

 

 

4. I have qEEG pictures; showing low power in certain parts of my brain.

 

Things i figuered out:

 

This electical sensation reacts to sound and light. Yellow light and sitting in a darkroom with only TV or mobilephone as lightsource can trigger it. Switching bright to dark can trigger it and vice versa too. Reading things on display can trigger it. Sensory input in general can trigger it. But not all. It feels like everythign is amplified. Sensory input is exhausting me and irritating me.Distant ambiente sound is the worst. I always have to close windows now to work/watch TV etc.

Laying in a dark siltent room with no sensory input is best.

 

-Diffuse noise can trigger it like fans, cars outside when im inside with windows closed...

 

-I tried the pupil flashlight test and it failed. Holding like 10 seconds then my pupils goin full dilatation. So my adrenal are still exhausted?

 

-my left ear is almost completely dry and produces no wax. it also seems that my jaw somehow narrows the left outer ear canal.

-my right ear seems fine, with alot of wax and good moisture. No pain. But also bit sensitive to sound.

 

-In a Tinnitusforum some people selfmedicated with Keppra (Levitracepam) and got cured from Noisesensivity.

 

I read somewhere that Serotonin/Dopamin ratio is important for internal noisereduction.

 

All input is welcome

 

 

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[jack black]

weird.

long shot, but have you considered focal temporal lobe epilepsy with auditory hallucinations?

[guybrush33]

weird.

long shot, but have you considered focal temporal lobe epilepsy with auditory hallucinations?

 

Hmm not yet. shouldnt i get seizures or something?

 

thank you for reply !

[jack black]

Hmm not yet. shouldnt i get seizures or something?

 

 

yes in generalized but not in focal. the patients may not be aware about episodes. read more (and i'm not saying that's what it is): https://en.wikipedia...#Focal_seizures

[guybrush33]

yes in generalized but not in focal. the patients may not be aware about episodes. read more (and i'm not saying that's what it is): https://en.wikipedia...y#Focal_seizure
 

Wow interesting...hmm did not know that episodes can come without noticing.(kind of). Thats maybe also the reason why kreppa helped some people with noisesensivity. Have you looked at my EEG?

[jack black]

 Have you looked at my EEG?

 

i woudn't know how to interp that. i'm not a neuro or even a clinician. just an amateur hobbyist, LOL.
 

[guybrush33]

Hmm i cant edit my initial post...maybe its important to add that i was in calorie restriction 5 days a week; with refeeds on weekends..

Edited by guybrush33, 31 October 2018 - 12:50 PM.

[Painkillerrr]

"focal temporal lobe epilepsy with auditory hallucinations?"

Are you kidding? He seems pretty healthy with "only" some ear problems, you are not an "ear expert" nor a neurologist so please avoid any allarming diagnosis

Its better if you dont randomly try drugs/treatments which could worsen or cause additional problems, serotonin/dopamine are neurotransmitters and with others they allow us to think, move and generally live, i would not risk many other problems by "playing" with agonist/antagonist unless your problem is really overwhelming

I know nothing about ear but remember reading about vns and tinnitus

Vagus Nerve Stimulation https://www.nature.c...598-017-12178-w

Ces https://www.stress.o...n-for-tinnitus/

Other stimulation https://www.ncbi.nlm...les/PMC4591848/

You may find more help here: https://www.reddit.com/r/neurology/

Edited by Painkillerrr, 31 October 2018 - 02:00 PM.

[guybrush33]

"focal temporal lobe epilepsy with auditory hallucinations?"

Are you kidding? He seems pretty healthy with "only" some ear problems, you are not an "ear expert" nor a neurologist so please avoid any allarming diagnosis

Its better if you dont randomly try drugs/treatments which could worsen or cause additional problems, serotonin/dopamine are neurotransmitters and with others they allow us to think, move and generally live, i would not risk many other problems by "playing" with agonist/antagonist unless your problem is really overwhelming

I know nothing about ear but remember reading about vns and tinnitus

Vagus Nerve Stimulation https://www.nature.c...598-017-12178-w

Ces https://www.stress.o...n-for-tinnitus/

Other stimulation https://www.ncbi.nlm...les/PMC4591848/

You may find more help here: https://www.reddit.com/r/neurology/

 

thank you ! this vns stuff sounds very interesting....only need to finde someone in germany who may supply me with such device... it also somehow correlates with the possibility that i physically damaged my vagus nerve with the head movements...im currently on ALA and it helps with the pain .
 

[Painkillerrr]

thank you ! this vns stuff sounds very interesting....only need to finde someone in germany who may supply me with such device... it also somehow correlates with the possibility that i physically damaged my vagus nerve with the head movements...im currently on ALA and it helps with the pain .

Try it, and tell me if it worked, i need 300$ for tacs/tpcs

[guybrush33]

Try it, and tell me if it worked, i need 300$ for tacs/tpcs

 

word <3

[xEva]

But have you considered the banal ear infection? 

 

Funny that as I was reading your story, I was thinking, ear infection, most likely triggered by an infected molar on the same side, possibly even a wisdom tooth -- and lo and behold you talk about it further down the page.

 

So I go with my first impression. I think it could be due to an infection from the tooth that was treated just before the onset of the symptoms. I think it managed to spread to your ear, because a wisdom tooth that was growing nearby probably made the surrounding tissues more penetrable for this sort of thing. I think it reached the ear and also inflamed the surrounding nerves -- thus your symptoms of sensory overload. If your nerves feel "naked", this could be because their sheaths are inflamed.

 

I think you need to calm the inflammation and address a possible infection (which may be several things piggybacking on each other).

 

For this I would consider minocycline, it's a tetracycline antibiotic with lipophilic properties, which makes it a better choice for bones and nerves. (i'd take 100 mg before bed, for at least a week, 2w better). It also has anti-inflammatory properties. 

 

The other thing I'd take is good quality lemon balm tea (Melissa officinalis) -- it's a wide-spectrum antiviral and... it's just good stuff, especially for this fort of thing. I'd take 2-3 cups of the strong brew in a day, definitely before going to bed.

 

The other thing I'd take is curcumin phytosome,  2-3 caps a day in the first 3 days and then taper off to 1-2 caps a day.

 

Also, I'd use a warm compress on that side, maybe for half an hour before going to bed, and after that go to bed with something warm on the head, maybe a wool scarf. This you could do couple of times a week, see how it makes you feel.

 

 

If this is an effective therapy, you should feel relief by the 3rd day, 5th in the latest. But don't stop these measures then, but continue for another week after the symptoms are gone.

 

Good luck

Edited by xEva, 01 November 2018 - 02:12 AM.

[guybrush33]

But have you considered the banal ear infection? 

 

Funny that as I was reading your story, I was thinking, ear infection, most likely triggered by an infected molar on the same side, possibly even a wisdom tooth -- and lo and behold you talk about it further down the page.

 

So I go with my first impression. I think it could be due to an infection from the tooth that was treated just before the onset of the symptoms. I think it managed to spread to your ear, because a wisdom tooth that was growing nearby probably made the surrounding tissues more penetrable for this sort of thing. I think it reached the ear and also inflamed the surrounding nerves -- thus your symptoms of sensory overload. If your nerves feel "naked", this could be because their sheaths are inflamed.

 

I think you need to calm the inflammation and address a possible infection (which may be several things piggybacking on each other).

 

For this I would consider minocycline, it's a tetracycline antibiotic with lipophilic properties, which makes it a better choice for bones and nerves. (i'd take 100 mg before bed, for at least a week, 2w better). It also has anti-inflammatory properties. 

 

The other thing I'd take is good quality lemon balm tea (Melissa officinalis) -- it's a wide-spectrum antiviral and... it's just good stuff, especially for this fort of thing. I'd take 2-3 cups of the strong brew in a day, definitely before going to bed.

 

The other thing I'd take is curcumin phytosome,  2-3 caps a day in the first 3 days and then taper off to 1-2 caps a day.

 

Also, I'd use a warm compress on that side, maybe for half an hour before going to bed, and after that go to bed with something warm on the head, maybe a wool scarf. This you could do couple of times a week, see how it makes you feel.

 

 

If this is an effective therapy, you should feel relief by the 3rd day, 5th in the latest. But don't stop these measures then, but continue for another week after the symptoms are gone.

 

Good luck

 

Hey thank you Yes i considered ear infection. odd thing is that its been months going on and  i had no visible inflammation (ENT told me) and thats it for them. yet i i felt super inflammed all the time.  Im quite a bit afraid to take antibiotics because they can make tinnitus worse...but ill probably give it a try. curcumin only for a few days? is it that strong?
 

[xEva]

Hey thank you Yes i considered ear infection. odd thing is that its been months going on and  i had no visible inflammation (ENT told me) and thats it for them. yet i i felt super inflammed all the time.  Im quite a bit afraid to take antibiotics because they can make tinnitus worse...but ill probably give it a try. curcumin only for a few days? is it that strong?
 

 

well, doctors usually do not recognize slow-acting infections, without high fever.  but  you can skip mino.

 

No questions about lemon balm? You had a cold just before it started. I could be some virus -- better yet, it could be the old plain resident herpes virus that took advantage of the situation when your immune sys was overwhelmed by other challenges -- and so it spread. Lemon balm is the best thing for it, costs little and is readily available. Why not try it? get good quality herb and make a strong brew. If it's due to a virus of herpes family it should help right away, and then at least you'll have a clue.

 

The thing is, this kind of things are rarely caused by a single pathogen. A single pathogen is no match for the immune sys of a healthy young person. But a few different pathogens, acting together, is another matter.  That's why I also suggested curcumin. Besides all other things, it's a very effective antifungal (especially against all sorts of yeast, which often take advantage of inflammation in the ear canal). + curcumin is a good anti-inflammatory. Some extracts, with higher bioavailability, are quite strong -- it depends on your unique enzyme system and other factors (like, take a larger dose, if you're a big guy)

 

Also, you have to employ the measures I suggested not singly but all together. And don't forget the warm compress before bed-- at least try it once and don't skip the part about keeping your head warm afterwards, while you sleep, otherwise it can get worse. And should you lose your appetite, go for a little fast until it returns. Conversely, if you have ravenous appetite, honor it, and eat the things you crave at this very moment. You have to help your organism overcome this challenge and for this, you gotta listen to your body and follow your instincts.

Edited by xEva, 01 November 2018 - 06:26 PM.

[Painkillerrr]

if its "just" inflammation aspirin, ibuprofen should the way to go, curcumin seems good as well and could be used with aspirin https://www.ncbi.nlm...pubmed/19455263

 

im not a doc, but at least where i live they "prescribe" aspirin, ibuprofen and not curcumin (whose effects greatly depend on the bran/quality of the herb)

[guybrush33]

well, doctors usually do not recognize slow-acting infections, without high fever.  but  you can skip mino.

 

No questions about lemon balm? You had a cold just before it started. I could be some virus -- better yet, it could be the old plain resident herpes virus that took advantage of the situation when your immune sys was overwhelmed by other challenges -- and so it spread. Lemon balm is the best thing for it, costs little and is readily available. Why not try it? get good quality herb and make a strong brew. If it's due to a virus of herpes family it should help right away, and then at least you'll have a clue.

 

The thing is, this kind of things are rarely caused by a single pathogen. A single pathogen is no match for the immune sys of a healthy young person. But a few different pathogens, acting together, is another matter.  That's why I also suggested curcumin. Besides all other things, it's a very effective antifungal (especially against all sorts of yeast, which often take advantage of inflammation in the ear canal). + curcumin is a good anti-inflammatory. Some extracts, with higher bioavailability, are quite strong -- it depends on your unique enzyme system and other factors (like, take a larger dose, if you're a big guy)

 

Also, you have to employ the measures I suggested not singly but all together. And don't forget the warm compress before bed-- at least try it once and don't skip the part about keeping your head warm afterwards, while you sleep, otherwise it can get worse. And should you lose your appetite, go for a little fast until it returns. Conversely, if you have ravenous appetite, honor it, and eat the things you crave at this very moment. You have to help your organism overcome this challenge and for this, you gotta listen to your body and follow your instincts.

Bloodworks shows my herpes-titer aswell as shingles-titer are high!!!; doc "said BUT WE CAN DO NOTHING ABOUT IT YOU HAVE TO WAIT IT OUT"  wtf

...Ok lemon balm check.. ill try to get some high quality herbs..i guess generic tea OTC is not enough? aswell for the curcumin?you have any brands/dosages guidlines?  i would rly like to try your anti viral stack. maybe + monolaurin+lysin?

[guybrush33]

if its "just" inflammation aspirin, ibuprofen should the way to go, curcumin seems good as well and could be used with aspirin https://www.ncbi.nlm...pubmed/19455263

 

im not a doc, but at least where i live they "prescribe" aspirin, ibuprofen and not curcumin (whose effects greatly depend on the bran/quality of the herb)

 

i tried aspirin in the first week and it somehow made things worse.

curcumin helped a bit. this yellow powder from the supermarket lol. i guess i have to try the extract. ibuprofen again  was to afraid back then because it could make my ear worse and my anxiety was sky high. no chance to risk anything. i guess i have to take ibuprofen anyway if i let my dentist do his work and let him pull the molar. i was to afraid back  then.

[xEva]

re herpes viruses, strange that your doctors did not offer you valtrex or its more recent analogues. But in my experience nothing beats lemon balm. I usually  I buy it from a farm in Oregon, where they grow it, though I am disappointed with the quality of their last shipment. Recently I saw it sold on ebay, from Croatia and Bulgaria, which is close to you. Or maybe you can go with a supermarket brand, just use 3-4 bags instead of 1 per cup and make sure it brews 10+ min in hot water (cover the tea pot with something to keep it hot, but don't keep it on the stove and never boil it). 

 

Re curcumin, Jarrows curcumin phytosome is good. Look for the special  Meriva extract, on the label. Other companies sell it too.

 

 

[ThreeKings12341]

re herpes viruses, strange that your doctors did not offer you valtrex or its more recent analogues. But in my experience nothing beats lemon balm. I usually  I buy it from a farm in Oregon, where they grow it, though I am disappointed with the quality of their last shipment. Recently I saw it sold on ebay, from Croatia and Bulgaria, which is close to you. Or maybe you can go with a supermarket brand, just use 3-4 bags instead of 1 per cup and make sure it brews 10+ min in hot water (cover the tea pot with something to keep it hot, but don't keep it on the stove and never boil it). 

 

Re curcumin, Jarrows curcumin phytosome is good. Look for the special  Meriva extract, on the label. Other companies sell it too.

 

i had kissing disease (from ebv), and its not reactivated, but i suffer from depression etc.. do you think i would still benefit from Valtrex (i actually have some at home - never tried them though)?

[xEva]

i had kissing disease (from ebv), and its not reactivated, but i suffer from depression etc.. do you think i would still benefit from Valtrex (i actually have some at home - never tried them though)?

 

I don't think so. From the description of it, it looks like valtrex works against replicating virus, so I would take it only during an outbreak. But you can drink melissa tea any time, maybe not too concentrated, but just like a regular herbal tea. This herb has been in medicinal use for millenia and I don't recall seeing anywhere adverse effects from its use. I know it works better than valtrex on cold sores. I start drinking tea as soon as I feel tingling in the lip. So I drink it for a day or two and the sore itself never develops. Or if I miss the moment and the sore pops up, it 'deflates' after the first cup.  I'm not sure what's its mode of action (gonna take a look).

[xEva]

@ThreeKings12341 I just was reading on lemon balm -- turns out, this herb has many different uses, and one of the traditional uses was for "melancholy".

[ThreeKings12341]

@ThreeKings12341 I just was reading on lemon balm -- turns out, this herb has many different uses, and one of the traditional uses was for "melancholy".

 

problem with that is probably that it reduces cortisol with is low already :/

[guybrush33]

could my condition labled as "silent migraine"?

[jack black]

could my condition labled as "silent migraine"?

 

and the effects you experience being an aura? this is a good question. I don't want to push my initial idea (that is not well taken here anyhow), but there is a strong connection between seizures and migraine. Quite a few drugs work well preventing both. maybe you should try one of them? if you don't want to do that, maybe keto diet?
 

Edited by jack black, 12 November 2018 - 03:02 AM.

[O3PH4N]

Have you checked your estrogen and hemoglobin levels since you stopped the TRT? 

[guybrush33]

Have you checked your estrogen and hemoglobin levels since you stopped the TRT? 

 

Yes...Why? Estrogen was very low after coldturky and was late July midrange nothing special.. hemoglobin...well lots of values there? anythign specific? it was also middlish...

[O3PH4N]

Yes...Why? Estrogen was very low after coldturky and was late July midrange nothing special.. hemoglobin...well lots of values there? anythign specific? it was also middlish...

 

Estrogen will be low after cold turkey for up to a month or so, but once the exogenous testosterone is depleted (around 4 weeks after your last shot), your estrogen levels will rocket.  That's why people do PCT (post cycle therapy) to keep the estrogen at bay and stimulate the gonads to start producing test asap.  Another thing testosterone does is raise your hemoglobin levels which in turn thickens your blood.  If I were you, I would donate some blood asap, it may change your life overnight.  How long has it been since your last injection? And how long since you've last checked your testosterone levels? 

[guybrush33]

Estrogen will be low after cold turkey for up to a month or so, but once the exogenous testosterone is depleted (around 4 weeks after your last shot), your estrogen levels will rocket.  That's why people do PCT (post cycle therapy) to keep the estrogen at bay and stimulate the gonads to start producing test asap.  Another thing testosterone does is raise your hemoglobin levels which in turn thickens your blood.  If I were you, I would donate some blood asap, it may change your life overnight.  How long has it been since your last injection? And how long since you've last checked your testosterone levels? 

My last shot was 9 months ago. my last testosterone lookup was 2 months ago. estrogon normal and testosteron  in just  "normal" range but still very low . next bloodwork is in 2 weeks.  Haemoglobin and related values are withing normal range. ( looked it up yersterday) i can post it later <3.

[guybrush33]

ooops double and cant delete it?

Edited by guybrush33, 07 December 2018 - 11:45 AM.

[guybrush33]

Update: This is a recent neuro panel...puzzels me even more...Any input  to this? <3.

Aaand: drinking lemon balm every day . got some catsclaw and lysine. hope it helps.

this:

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