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CBS revisited

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
Wow this thread went into a frenzy! I can't keep up with all the loooooong posts. But it was mentioned above that zinc causes inflammation???

I have a love/hate relationship with zinc and copper. My problem is that allergies destroy mucous membranes and rebuilding them takes a horrendous amount of zinc (75 mg/day for a cold, 150mg/day for my allergies). If I take enough zinc I can breathe again in 15 minutes. So it's kinda clear. Despite taking high amounts of zinc and no copper before age 50 my hair alaysisees showed no copper deficiency until suddenlt I turned up borderline copper deficient at age 50. It turns out that estrogen helps you absorb copper (and testosterone prolly does as well because it is rare for young men to be low in copper). I stopped taking zinc after 50 because of the copper issue and then suddenly developed ne allergies I never had before. It took me 4 years to tie that to stopping zinc supplementation (as opposed to believing I was falling apart at menopause). Now I have not found any reason to think (or seen any study that showed) a copper loss due to allergies, so I no longer believe there is a zinc: copper ratio. I try to take 5mg copper / day regardless of how much zinc I take.

It is hard on me to have such big swings of zinc. I am finding that I have all sorts of allergies I thought I was impervious to before but now realise I am just rebuilding my tissues constantly from the daily zinc. It concerns me greatly. Both zinc and copper can hurt my stomach. I have no idea why sometimes they do not bother me at all and other times quite a bit.

SOmeone else mentioned taking zinc in relation to the thyroid and adrenal glands. I want to make you especially CBS'ers who maybe are not eating enough protein think about this: you need tyrosine to make thyroid hormone and also to make one of the adrenal hormones (and also dopamine). My doctor prescribed 1g tyrosine/day for me and some days I find I need to take 1.5-2 g if I eat low protein meals. If you do not make enough thyroxine you will eventually not make enough adrenal hormone either (and when that happens you will get low blood pressure (even if you have 3 genes causing high blood pressure) and you will need salt or pass out. So don't just consider zinc regarding your thyroid, but also tyrosine. In fact, think about your zinc requirements. If you have allergies you need extra zinc (maybe not as much as me?) but if not it might be SIMPLY THE TYROSINE that you need.
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
Progesterone can also be huge for a woman for sleep. My mom reacts bad to DHEA but wonderfully to progesterone. How much DHEA did you try? As a woman you need very little ...

:)
This is supposedly true in general, but not necessarily for CBSers. I cannot function w/o 75mg DHEA/day and I am female.

Did anyone every try chromium for anxiety? I just ran across a website saying it not only helps with blood sugar but also anxiety. Oh. Duh. Low blood sugar causes a panic attack. Ok, nevermind. It's obvious. I just never thought about it before.
 

dbkita

Senior Member
Messages
655
Hi Dbkita,

I once worked with a neuroendocrinologist in California, so I "recognize" some of the language you use. I've gone through your posts with interest and would love to hear your thoughts on norepinephrine.

My illness began 5.5 years ago due to a massive thyroid storm, after a doctor gave me thyroid hormones despite being hyperthyroid (don't ask, lol). I accidentally took a whopping amount (equivalent of over 7 grains Armour), and literally overnight I went from being an active young guy to completely incapacitated. It feels like my body is stuck in a state of excess norepinephrine, which eventually wore me down to the point where I'm currently homebound.

You know how when you exercise, you can feel your heart pounding in your chest? I feel that all the time. And not just in my chest, but in my left arm, left leg, and left side of my neck. If I lay down and put a pillow on my chest, it bounces up and down with each beat. I also tend to feel hot even though my body temperature is low. So these signs point to adrenaline, but at the same time, my blood pressure and heart rate are on the low side, which doesn't fit. I also don't have any emotional anxiety or pain, and my plasma catecholamines are not high.

My understanding is that norepinephrine is a back-up system that the body uses as a compensatory mechanism when energy production is hindered. It's like a raging bull that needs to be controlled. Signals that can balance NE include serotonin (SSRI, 5-HTP, tryptophan), dopamine, GABA (benzos, GABA analogues), taurine, glycine, cortisol, T3/T4, DHEA, pregnenolone, progesterone, and testosterone.

I tried hydrocortisone for awhile, which helped somewhat, but I chose to discontinue it because I didn't feel stable on it. I also tried taking an SSRI for a couple months (Lexapro), and there was one day where the heart pounding completely disappeared, but unfortunately the effect didn't last. Beta blockers had a mild benefit, as do benzos. I haven't felt inclined to continue any of these pharmaceuticals long-term because the benefits weren't particularly impressive.

So these experiments indicate that NE might be the culprit, but it's not 100% guaranteed. You seem to be familiar with this area. Do you think adrenaline is the issue? If so, are you aware of any other ways of reducing it? I'm wondering if Lyrica is worth trying, since it's been used for people with familial dysautonomia. Besides adrenaline, can you think of any other signals that might be playing a role? A lot of people talk about glutamate toxicity, but I don't think it's a major issue here.

You seem to be well-versed in this area, and I'd appreciate any input. Thanks! :)

I am sorry to hear about what happened to you that is truly a terrible event that you suffered. 7 grains at once is insane ... wow.

The feeling while being actually low temperature is a classic sign of norepinephrine 'survival' mode. But then again low temperature can be due to low thyroid which I am sure you have tested for right (including rev T3)? Have you perchance been checked for thryoid antibodies since the event (TPO, TG)?

There are too many variables for me to be able to say much about the low blood pressure and low pulse in regards to NE. If your pulse is pounding in your chest either your pulse is high or your stroke volume is huge (may relate to the amount of vasoconstriction going on) ... or your sensing of it (i.e. pulsatile tinnitus)? There must be some objective measure cardiologically speaking of your pounding pulse regardless of neurotransmitter unless it is your sensation of it.

Hyperthyroid can cause a pounding chest but I doubt you would sleep and would undoubtedly have a lot of other icky effects.

High constant levels of NE for a long period of time will spur the immune system and will often lead to catabolism and pain to my understanding. So maybe having some HC helped with general inflammation, but if you are lucky enough to have no major infection or an autoimmune disease (knock on wood) maybe the effects have not themselves spun out of control.

If you had high levels of NE in the brain, yet have somehow low inflammation that = mania which you don't have, right?

What are your energy levels like? How do you sleep? Can you relax easily? Do you wake up with sweats in the night? I am not by any means an MD but these would be possible questions.

Since the effect was only one day on the LexaPro I would have to discount that one sorry. Not enough information.

If HC helped but you don't feel stable on it then maybe you need to see a doctor about medrol or something. But you have to have a working hypothesis.

Some of your story fits NE and some does not. If you were overloaded with ACh, then I think you would have a lot of other noticeable effects.

Have your serotonin levels been checked in your serum? I know they won't tell anything about in the brain but they may helps rule out a serotonin overload in the periphery. Then again you don't have gut symptoms, right? Hmm. Peculiar.

Man if I were you, I would try to find another doctor and see if something like atenolol or similar ilk. I know it is a beta blocker but if the right dose of atenolol does not work then I doubt it is norepinephrine.

I gravitate back to your cardiological evaluation. Have you seen a cardiologist? There are no abnormal objective measures? The reason I am a stickler on this is the stuff you hear when you exercise is when your pulse and stroke volume go up to meet the body's needs.

I don't see glutamate causing this without you having a lot of other neurological symptoms. It could explain your heightened perception of the pounding heart but it would invoke many other things as well to my understanding.

Sorry I can't be of much help.
 

dbkita

Senior Member
Messages
655
This is supposedly true in general, but not necessarily for CBSers. I cannot function w/o 75mg DHEA/day and I am female.

Did anyone every try chromium for anxiety? I just ran across a website saying it not only helps with blood sugar but also anxiety. Oh. Duh. Low blood sugar causes a panic attack. Ok, nevermind. It's obvious. I just never thought about it before.

Just curious you are saying a CBSer does better on DHEA?

Most endocrinologists would prescribe pregnenolone and progesterone before they attempted that high a dose of DHEA for a woman. But then again some women use 50-75 mg DHEA for IVF and such. I am guessing you are short-circuiting some step in hormone synthesis by taking that dose of DHEA but hey if works for you ... great!. I had a good friend of mine who went on that sort of dose of IVF .. .she had discontinue it 2 weeks later after trip to the ER sadly. Everyone is different.
 

dbkita

Senior Member
Messages
655
Wow this thread went into a frenzy! I can't keep up with all the loooooong posts. But it was mentioned above that zinc causes inflammation???

I have a love/hate relationship with zinc and copper. My problem is that allergies destroy mucous membranes and rebuilding them takes a horrendous amount of zinc (75 mg/day for a cold, 150mg/day for my allergies). If I take enough zinc I can breathe again in 15 minutes. So it's kinda clear. Despite taking high amounts of zinc and no copper before age 50 my hair alaysisees showed no copper deficiency until suddenlt I turned up borderline copper deficient at age 50. It turns out that estrogen helps you absorb copper (and testosterone prolly does as well because it is rare for young men to be low in copper). I stopped taking zinc after 50 because of the copper issue and then suddenly developed ne allergies I never had before. It took me 4 years to tie that to stopping zinc supplementation (as opposed to believing I was falling apart at menopause). Now I have not found any reason to think (or seen any study that showed) a copper loss due to allergies, so I no longer believe there is a zinc: copper ratio. I try to take 5mg copper / day regardless of how much zinc I take.

It is hard on me to have such big swings of zinc. I am finding that I have all sorts of allergies I thought I was impervious to before but now realise I am just rebuilding my tissues constantly from the daily zinc. It concerns me greatly. Both zinc and copper can hurt my stomach. I have no idea why sometimes they do not bother me at all and other times quite a bit.

SOmeone else mentioned taking zinc in relation to the thyroid and adrenal glands. I want to make you especially CBS'ers who maybe are not eating enough protein think about this: you need tyrosine to make thyroid hormone and also to make one of the adrenal hormones (and also dopamine). My doctor prescribed 1g tyrosine/day for me and some days I find I need to take 1.5-2 g if I eat low protein meals. If you do not make enough thyroxine you will eventually not make enough adrenal hormone either (and when that happens you will get low blood pressure (even if you have 3 genes causing high blood pressure) and you will need salt or pass out. So don't just consider zinc regarding your thyroid, but also tyrosine. In fact, think about your zinc requirements. If you have allergies you need extra zinc (maybe not as much as me?) but if not it might be SIMPLY THE TYROSINE that you need.

Zinc stimulates the immune system and in general helps to strengthen it. But in the presence of things almost all of us have in our bodies this invariably means stronger inflammatory responses. This by no means worse allergies. Mast cell degranulation, etc. has a ton of its own complexities.

Ironically inflammation is not always a bad guy just when out of control. Inflammation is a natural part of life. Like I said inflammation is intended to do many things. At night think of it as the nightwatch / janitorial staff coming on shift to take care of things while you go to sleep.

On a different note, I missed something ... why do you take 5 mg copper for a borderline copper deficiency? Have you had your ceruloplasminin levels tested recently? Copper will btw lower histamine (via DAO in the gut) but at the same time will activate MAO which maybe you need. Dunno.
 

dbkita

Senior Member
Messages
655
I do not believe science knows the result of combining a lot of genetic defects like mine and so I advocate for everyone to test their homocysteine and their ammonia and whatever else they can in conjunction with genetic testing to sort out the combinatorial (or whatever other) issues there are which can make your actual results differ widely from what Yasko tells you is in your genes.

Agreed. But many of us may have homocysteine in the 8-9 range, have normal ammonia levels and try Fredd's protocol and get creamed by overmethylation. I would be willing to wager that your MTR / MTRR genes are players in your need for high methylation. Maybe I am wrong but that would be my hunch.
 

dbkita

Senior Member
Messages
655
By the way, have you ever tried d-limonene (orange oil) for your reflux? Life Extension did a study on it.

Yeah I tried it and the result was not pleasant. I got a lot of tightness in my throat and upper chest. Possibly a mild allergy? Stopped after 2nd day. Oh well.
 

adreno

PR activist
Messages
4,841
If your cortisol levels are flat then your adrenals are sluggish either due to stress or poor HPA signaling or immune system override. Uncontrolled chronic NE is often (don't want to say always) a sign of he immune system hijacking adrenal output, since again it cannot otherwise do its job. The other way to get to this point is via neurotransmitter deterioration that essentially let's the NE beast out of its chains and again the immune system takes advantage of this.

The question is where you are at in either process. Are you on the up-slope where the adrenals are under siege but still somewhat responsive or on the downslope where not only cortisol but all or most adrenal products are too low and the immune system has won. Then SNS emergency dominance becomes the body's baseline and NE is king. That is not a good place to be in, trust me; where inflammation is sky high and you are exhausted but the NE is rampaging around like crazy because your body thinks it is the only way to survive.

I don't know where I am, lol. I have shifted gears and am hammering NE at the moment. I have stopped coffee and added olive leaf (enhances NE transporter), ashwagandha (increases GABA and ACh) and lithium (desensitizes NE receptors). I am feeling tired, but not so wired. The dark circles under my eyes are worse. I'm yawning constantly. I look more tired. But pain and anxiety is down. My mind is not racing so much, but mental energy is down.

The thing about inflammation is that I never seemed to have much on it on test. CRP, SED, homocysteine all normal. No signs of (active) infections on any tests. Blood tests normal. Blood pressure normal. My allergies and energy is better when NE is up. I don't think it is entirely the case that NE is inflammatory. NE have found to often be low in ME/CFS.

You have a way with words. Sounds like something out of horror movie when you describe the NE beast getting released from it's chains and rampaging around :eek: BTW, actually SSRIs do a pretty good job at containing the NE beast, but I know many here find them intolerable. This might also be a reason why things haven't gone totally out of control for me.

BTW, the prazosin I mentioned in the other thread would put a break on the release of NE. I remember I got swelling in my face when I was on it a short while for kidney stones. The doctor thought I was having an allergic reaction (I wasn't) and wanted to give me high dose steroids. I threw them in bin the moment he left the room (I was in hospital).
 

freshveggies

Senior Member
Messages
196
Hi Dbkita,

I once worked with a neuroendocrinologist in California, so I "recognize" some of the language you use. I've gone through your posts with interest and would love to hear your thoughts on norepinephrine.

My illness began 5.5 years ago due to a massive thyroid storm, after a doctor gave me thyroid hormones despite being hyperthyroid (don't ask, lol). I accidentally took a whopping amount (equivalent of over 7 grains Armour), and literally overnight I went from being an active young guy to completely incapacitated. It feels like my body is stuck in a state of excess norepinephrine, which eventually wore me down to the point where I'm currently homebound.

You know how when you exercise, you can feel your heart pounding in your chest? I feel that all the time. And not just in my chest, but in my left arm, left leg, and left side of my neck. If I lay down and put a pillow on my chest, it bounces up and down with each beat. I also tend to feel hot even though my body temperature is low. So these signs point to adrenaline, but at the same time, my blood pressure and heart rate are on the low side, which doesn't fit. I also don't have any emotional anxiety or pain, and my plasma catecholamines are not high.

My understanding is that norepinephrine is a back-up system that the body uses as a compensatory mechanism when energy production is hindered. It's like a raging bull that needs to be controlled. Signals that can balance NE include serotonin (SSRI, 5-HTP, tryptophan), dopamine, GABA (benzos, GABA analogues), taurine, glycine, cortisol, T3/T4, DHEA, pregnenolone, progesterone, and testosterone.

I tried hydrocortisone for awhile, which helped somewhat, but I chose to discontinue it because I didn't feel stable on it. I also tried taking an SSRI for a couple months (Lexapro), and there was one day where the heart pounding completely disappeared, but unfortunately the effect didn't last. Beta blockers had a mild benefit, as do benzos. I haven't felt inclined to continue any of these pharmaceuticals long-term because the benefits weren't particularly impressive.

So these experiments indicate that NE might be the culprit, but it's not 100% guaranteed. You seem to be familiar with this area. Do you think adrenaline is the issue? If so, are you aware of any other ways of reducing it? I'm wondering if Lyrica is worth trying, since it's been used for people with familial dysautonomia. Besides adrenaline, can you think of any other signals that might be playing a role? A lot of people talk about glutamate toxicity, but I don't think it's a major issue here.

You seem to be well-versed in this area, and I'd appreciate any input. Thanks! :)


the same thing happened to me when the doctor prescribed too much T3. I felt like a train wreck. I wonder if gaba would help. Lowers glutamates. I don't have the over stimulation anymore. Took over a year to go away, but I still don't sleep. I might have slept for 30 min. last night. Try gaba a couple times during the day and then in the evening. I took it at the time of bed last night and I had heart racing. I wonder why that happens. If I take it at 7:30 I can feel myself get somewhat drowsy.
 

dbkita

Senior Member
Messages
655
I don't know where I am, lol. I have shifted gears and am hammering NE at the moment. I have stopped coffee and added olive leaf (enhances NE transporter), ashwagandha (increases GABA and ACh) and lithium (desensitizes NE receptors). I am feeling tired, but not so wired. The dark circles under my eyes are worse. I'm yawning constantly. I look more tired. But pain and anxiety is down. My mind is not racing so much, but mental energy is down.

The thing about inflammation is that I never seemed to have much on it on test. CRP, SED, homocysteine all normal. No signs of (active) infections on any tests. Blood tests normal. Blood pressure normal. My allergies and energy is better when NE is up. I don't think it is entirely the case that NE is inflammatory. NE have found to often be low in ME/CFS.

You have a way with words. Sounds like something out of horror movie when you describe the NE beast getting released from it's chains and rampaging around :eek: BTW, actually SSRIs do a pretty good job at containing the NE beast, but I know many here find them intolerable. This might also be a reason why things haven't gone totally out of control for me.

BTW, the prazosin I mentioned in the other thread would put a break on the release of NE. I remember I got swelling in my face when I was on it a short while for kidney stones. The doctor thought I was having an allergic reaction (I wasn't) and wanted to give me high dose steroids. I threw them in bin the moment he left the room (I was in hospital).

CRP is next to worthless in my opinion. My CRP remained low the whole time I had raging inflammation (confirmed by an off the charts C3a prior to going on corticosteroids) from my autoimmune disease. I had normal homocysteine the entire time as well (7-9 range). My rule of thumb is look at the clinical symptoms and use tests to help sort it out, don't use tests to completely exclude or include something, unless you have a wide panel there are simply too many variables.

It is interesting that going the NE route seems to have shifted the paradigm some. I am glad to hear pain is down. Pain feeds anxiety and hence norepinephrine.

I have found the blood pressure argument for norepinphrine to be fuzzy. Yes I know what it does. And some people show the classic signs. And yes people on beta blockers and such will have lower pulse and blood pressure. But I have seen to many situations where one person may fall in normal range for pulse and pressure but they are clearly flying on NE while others are out of range. The question is what is "normal" for an individual person.

For example my entire family on my Mom's side flies on norepinephrine. My dad does to. So not a surprise my brother and I do also. Was this a problem for me when I was in my teens an d 20s? Not really. Meant sleep wasn't that great and I over-exerted myself but that is how I got a bunch of things accomplished. Now my mom and I react to NE with some increased BP and pulse. I did not always. I only started that in my 30s around the same age my Mom did. My dad even before he got into long distance running had normal values. Now even in 60s after 30 years of competitive marathon racing he has a pulse of 42. My brother is 12 years younger, exercises a little, is on aldosterone and medrol, works a billion hours a week, and his pulse is in the 60s all the time. Everyone is different. So yeah I tend to not exclude norepinephrine just based on pulse and BP measurement since we have to know that each person's baseline is different. Will more NE increase things? Sure, relatively speaking. And vice versa of course.

If you feel calmer and more tired on that protocol then that means something. I would not overdo the GABA enhancement only because those pesky receptors desensitize easily. Ashwaghanda made things worse for me back in 2009 but then again things have improved immensely for me so the effect may differ now. I think I was so bad back then that more ACh meant more sensing of crippling pain ... not fun.

I am starting to wonder if lithium is a big part of things for some of us. Yasko warned that some people with lower BH4 (I think) are susceptible to lower iodine and lithium levels. Well until I started supplementing with Iodoral 12 months ago I had undetectable levels in 24 hour urine panels of iodine. So maybe lithium is low also. Makes me wonder.

NE is not intrinsically inflammatory provided controls are in place. When the beast breaks free and the chains are broken then it will stimulate the immune system and the increased inflammatory response will increase NE in a vicious, vicious cycle. I lived that cycle for years and corticosteroids were for me the only way to tone down inflammation so other measures could be put into place to calm the beast down enough. Trust me it really can be a horror story.

SSRIs are helpful for some for sure in this. But I had been put on various meds in the mid 2000s that made things much worse in other ways so my doctor did not want to experiment more on that line. For example TCAs damn near killed me in 2008. Apparently there is no "clean" SSRI or similar drugs in existence. Your SSRI is probably a good things for you. No reason to stop it.

Remember serotonin is the caretaker / nurturing neurotransmitter. It shepherds and amplifies and potentiates GABA, dopamine and many other neurotransmitters in the body, provided really high levels do not irritate the periphery. Adding 5HTP to my regime 18 months ago really helped me to be able to have a better mood to handle my chronic pain and discomfort. I would prefer to use tryptophan but based on failures with it the past I am not ready to make that jump yet. That being said I am positive that low BH4 is hampering my dopamine and serotonin production. Before the excuse was low ferritin (six years of over-phlebotomies --- don't ask -- terrible hematologist). But the iron is back and I still know I do not make enough.

I understand where you are coming from with the prazosin but I am not a fan of direct manipulations of the NE receptors by drugs. I have had bad experiences with clonidine, atenolol, and the like. That is just my opinion. As you send everything effects the HPA axis. All I would say is there is a difference between direct intervention and feedback influence or indirect manipulation.

I would say if you are able to alter the arc of your "trajectory" from wired and pain and anxiety to more tired and calm and less pain then you have a lever arm on there somewhere to experiment. Right now see where you can get with the tools you have. Besides these things take time to reach a steady state. Btw how are you sleeping? What is your circadian rhythm like?
 

dbkita

Senior Member
Messages
655
the same thing happened to me when the doctor prescribed too much T3. I felt like a train wreck. I wonder if gaba would help. Lowers glutamates. I don't have the over stimulation anymore. Took over a year to go away, but I still don't sleep. I might have slept for 30 min. last night. Try gaba a couple times during the day and then in the evening. I took it at the time of bed last night and I had heart racing. I wonder why that happens. If I take it at 7:30 I can feel myself get somewhat drowsy.


Sorry I am a bit confused. What are you main symptoms right now? That you cannot sleep? Fatigue during day as well? Any pain? Wired at all? What is your mood like?

Maybe you have too little of the inhibitory neurotransmitters like gaba, glycine, taurine or hormones like serotonin and melatonin? I don't see how glutamate can be at fault for no sleep unless you are over stimulated and can't turn your brain or senses off. NE can do similar but different things. Can be tricky to discern.
 

freshveggies

Senior Member
Messages
196
Sorry I am a bit confused. What are you main symptoms right now? That you cannot sleep? Fatigue during day as well? Any pain? Wired at all? What is your mood like?

Maybe you have too little of the inhibitory neurotransmitters like gaba, glycine, taurine or hormones like serotonin and melatonin? I don't see how glutamate can be at fault for no sleep unless you are over stimulated and can't turn your brain or senses off. NE can do similar but different things. Can be tricky to discern.


Main symptoms are major fatigue---some due to lack of sleep and very hard time sleepin. Lately has been little to none. But when I do sleep, I just don't have any energy to move my body forward. It is all a chore.

I dropped the gaba at noon since it makes me too sleepy. I took one gaba last night at 7:30 and 2 mag glycine. I decided to add back in the unisom and no valerian and no kava. I had an ok night. Still awake by 4:20 and then no sleep after that. I noticed that I got real sleepy at 7:00---kind of was thinking what it would be like to go to bed that early when I see a window of getting so tired. Didn't go to bed as I don't want to get woken up by the rest of the family when they go to bed. That could be worse.

I kind of did a lot of changes yesterday, but I had to. I started iodine in a very small dose. 1 drop of 2% lugals in 8 oz of water---take 1 oz a day for 8 days then increase to 2 drops and take 1 oz for the next 8 days and so on. Also added in vitamin d by mistake as I thought it was my A drops. I personally think my brain is starved for nutrients like iodine and D. I know I am low in DHEA but haven't been successful in supplementing it. 7:-Keto might have been better.

has anyone seen ox bile or enzymes interfere with sleep? I have fat malabsorption and my doc wants me to take ox bile. I seem to never be able to sleep when I take it, but it could be a co-incidence.
 

invisiblejungle

Senior Member
Messages
228
Location
Chicago suburbs
I am sorry to hear about what happened to you that is truly a terrible event that you suffered. 7 grains at once is insane ... wow.

lol yeah. I was 23 at the time, and if I was older I probably would've died from a heart attack.

The feeling while being actually low temperature is a classic sign of norepinephrine 'survival' mode. But then again low temperature can be due to low thyroid which I am sure you have tested for right (including rev T3)? Have you perchance been checked for thryoid antibodies since the event (TPO, TG)?

My thyroid labs are surprisingly decent, but I do suspect that there is sub-optimal thyroid signaling. I definitely think that thyroid and adrenals are playing a major role.

There are too many variables for me to be able to say much about the low blood pressure and low pulse in regards to NE. If your pulse is pounding in your chest either your pulse is high or your stroke volume is huge (may relate to the amount of vasoconstriction going on) ... or your sensing of it (i.e. pulsatile tinnitus)? There must be some objective measure cardiologically speaking of your pounding pulse regardless of neurotransmitter unless it is your sensation of it.

Hyperthyroid can cause a pounding chest but I doubt you would sleep and would undoubtedly have a lot of other icky effects.

High constant levels of NE for a long period of time will spur the immune system and will often lead to catabolism and pain to my understanding. So maybe having some HC helped with general inflammation, but if you are lucky enough to have no major infection or an autoimmune disease (knock on wood) maybe the effects have not themselves spun out of control.

I've been tested for the major autoimmune conditions, and I don't have symptoms of a major infection. However, I've developed a little eczema on my hands, which could be a sign of inflammation. I only recently began exploring the possibility of brain inflammation. Perhaps the thyroid storm caused brain inflammation, which led to high NE, which led to a positive feedback loop. I don't have any other symptoms of inflammation, but perhaps this is the way it's being expressed due my individual constitution. The autism world is very big on reducing brain inflammation, so I'm looking at their recommendations.

If you had high levels of NE in the brain, yet have somehow low inflammation that = mania which you don't have, right?

Ah, very interesting point. High NE without inflammation would equal mania, sort of like taking cocaine? I definitely don't have that, so perhaps that's a sign pointing towards inflammation.

What are your energy levels like? How do you sleep? Can you relax easily? Do you wake up with sweats in the night? I am not by any means an MD but these would be possible questions.

My energy is quite poor, and I barely leave the house. I have trouble falling and staying asleep. However, despite all that, I feel quite relaxed, which only makes the situation more perplexing. I don't have any cognitive/emotional issues, and in fact my mental health is quite robust. That's why I'm not sure about brain inflammation.

Since the effect was only one day on the LexaPro I would have to discount that one sorry. Not enough information.

If HC helped but you don't feel stable on it then maybe you need to see a doctor about medrol or something. But you have to have a working hypothesis.

Some of your story fits NE and some does not. If you were overloaded with ACh, then I think you would have a lot of other noticeable effects.

Have your serotonin levels been checked in your serum? I know they won't tell anything about in the brain but they may helps rule out a serotonin overload in the periphery. Then again you don't have gut symptoms, right? Hmm. Peculiar.

Man if I were you, I would try to find another doctor and see if something like atenolol or similar ilk. I know it is a beta blocker but if the right dose of atenolol does not work then I doubt it is norepinephrine.

I gravitate back to your cardiological evaluation. Have you seen a cardiologist? There are no abnormal objective measures? The reason I am a stickler on this is the stuff you hear when you exercise is when your pulse and stroke volume go up to meet the body's needs.

I don't see glutamate causing this without you having a lot of other neurological symptoms. It could explain your heightened perception of the pounding heart but it would invoke many other things as well to my understanding.

Sorry I can't be of much help.

I actually haven't seen a cardiologist because I've never felt that there was a physical issue with my heart. But perhaps it could be enlightening.

I've thought about trying atenolol, and maybe I will as an experiment. But of course the optimal solution would be to balance the signals. I've noticed that when I try to directly address it with things like guanfacine, it's like my body fights back and just creates even more NE.

Thanks for the input. I'm still leaning towards NE as the culprit, with some of the inconsistencies probably being related to subpar hormonal signalling.

By the way, how much Medrol do you take?
 

dbkita

Senior Member
Messages
655
I've been tested for the major autoimmune conditions, and I don't have symptoms of a major infection. However, I've developed a little eczema on my hands, which could be a sign of inflammation. I only recently began exploring the possibility of brain inflammation. Perhaps the thyroid storm caused brain inflammation, which led to high NE, which led to a positive feedback loop. I don't have any other symptoms of inflammation, but perhaps this is the way it's being expressed due my individual constitution. The autism world is very big on reducing brain inflammation, so I'm looking at their recommendations.

Brain inflammation is possible. But usually there needs to be a trigger. I don't know if a thyroid storm itself can do that.
There are three main things the brain needs: oxygen, glucose, and integrity of its brain barrier. The first two have very different effects. The lack of the last one leaves the door open for brain inflammation the same way a leaky gut leaves the door open for general inflammation.

I've thought about trying atenolol, and maybe I will as an experiment. But of course the optimal solution would be to balance the signals. I've noticed that when I try to directly address it with things like guanfacine, it's like my body fights back and just creates even more NE.

I would be cautious with atenolol. Make sure you have a physician to monitor things. If you have a leaky BBB, atenolol may cause excessive (and I stress the word excessive depression (even suicidal). Please be cautious.

By the way, how much Medrol do you take?

I was put on 6mg of Medrol in 2009 which brought me back from the grave. But when my autoimmune disease was discovered my doctor raised me slowly. But we found I reacted better to prednisone than medrol for some peculiar reason (more calming and more muscle strength). So I am currently at 10 mg prednisone (2.5 mg of prednisone is like 2 mg of medrol, both have similar half lives) + 4 mg medrol. So I am double physiological replacement. The hope is with time my GAD antibodies will decrease enough to allow me to lower the dose. Time will tell.
 

invisiblejungle

Senior Member
Messages
228
Location
Chicago suburbs
Brain inflammation is possible. But usually there needs to be a trigger. I don't know if a thyroid storm itself can do that.
There are three main things the brain needs: oxygen, glucose, and integrity of its brain barrier. The first two have very different effects. The lack of the last one leaves the door open for brain inflammation the same way a leaky gut leaves the door open for general inflammation.

Oh, hmm.... I had no idea that brain inflammation is related to a leaky BBB, although that does make sense. I think you mentioned that feeling effects from GABA is indicative of a leaky BBB, which doesn't seem to be the case for me since I can take 5 grams of GABA and not feel much.

There's a member of this forum, Hip, who claims that taking anti-inflammatory substances healed his anxiety.

http://forums.phoenixrising.me/index.php?threads/non-standard-anti-anxiety-treatment.6432/

His theory is that his anxiety was caused by brain inflammation. Since anxiety is often related to high NE, that's why I had the idea that perhaps my high NE symptoms are due to brain inflammation. Man, I wonder if a cytokine panel would shed any light on whether or not brain inflammation is an issue.
 

dbkita

Senior Member
Messages
655
It is possible I suppose to have brain inflammation without a BBB, but it is a frequently found component, i.e. like an accomplice in a murder.

If 5 grams (not 500 mg, but 5000 mg) does not do much then your BBB is intact. Which is a very good thing, trust me.

Atenolol or something like that then may be something to try provided you are working with a good doctor (again caution please) to see if norepinphrine is the bandit here.

Anti-inflammatories could also be very useful but be careful since some like quercetin inhibit COMT and can make even more methyl donors float around.

Not sure how to clinically interpret a cytokine panel sorry.
 
Messages
2
Anyone familiar with nutra eval results and a "back door" indication of CBS upregulation?
My 12 yr old daughter has the following: very high cysteine, aspartic acid, asparagnine NE amino acids, Hight aminoadipic acid and amino-N-butyric acid (B markers), low urea, and finally many high vitamin markers (ketoisovaleric acid, ketoisocaproic acid, keto methlvaleric acid, xanthurenic acid, glutaric acid. Oh, she also has high kynurenic acid (neurotransmitter metabolites).
I'm not asking for treatment suggestions just whether or not this fits a blatant profile.
Thanks a lot.
 

dbkita

Senior Member
Messages
655
Caledonia posted a thread by Rich Vank that itemized his interpretation of NutraEval results. Sounds like more going on that simple cbs upregulation. The high kynureni acid is a concern imo.
 

aaron_c

Senior Member
Messages
691
But I ... have high taurine (normal-high beta alanine)

I do think I would do well to stop taurine (sad since it helped deal with high glutamate but probably re-routed sulfur down the sulfite / sulfate production path) and probably lower my ALA.as well.

I know this thread is a bit old, but...

Hi @dbkita

I had a few questions about the posts above I was hoping you could answer.

1.) What is the connection between taurine, beta alanine, and ALA?

2.) When you say that taurine probably re-routed sulfur down the sulfite/sulfate production path, are you just talking about taurine being metabolized and releasing its sulfur, or is there something else going on? And how does this affect ALA?

Thank you very much!

Aaron C