LACK OF ADRENALINE, AIR HUNGER

[susan murphy]

I am new to this amazing website. Cort recommended a post my "story" here and said he wanted Issie to read this and give her thoughts.

I am 55 years old and have had CFS for 33 years. I have managed pretty well until 5 years ago when I started having hot flashes with perimenopause. At this time my adrenaline either decreased or I became unable to release enough.

I have no increase in heart rate when I am startled. I haven't had a startle reflex for 5 years!!! Two 24 hour urine catecholamine tests show zero epinephrine and a plasma catecholamine test shows that my epinephrine decreases after standing for 10 minutes. This is NOT NORMAL!

Mayo clinic said it was abnormal but didn't know what to make of it. This has caused my fatigue to increase greatly and my air hunger to increase. Interestingly, my cortisol runs high. Over the last 20 years I have had occasional air hunger and it was usually due to being in hot weather. Allergy season can bring it on too.

After repeated incidents I have come to realize that air hunger is a combination of high cortisol and low epinephrine. During these episodes, when adrenaline would kick in, the air hunger would go away. This makes sense since epinephrine expands the lungs.

A couple years ago I tried taking isocort a few times, since I was sure my cortisol was low because I was fatigued. This sent air hunger through the roof! Subsequent multiple testing via urine, blood, and saliva usually show high cortisol.

I've tried using an inhaler and this made air hunger much worse too! Mayo clinic said that my air hunger is due to a dominant sympathetic nervous system. Autonomic testing showed that my sympathetic nervous system is dominant. I believe this is due to high cortisol, since my epinephrine is lacking. Worth noting, I have little emotional stress.

I tried Dr. Hinz's amino acid protocol to see if that would increase epinephrine. I took tons of tyrosine and mucuna and my pulse was still under 60! I believe I made a bunch of norepinephrine because I got very anxious, but no increase in epinephrine.

I know that lack of adrenaline is key to my dramatically worsening symptoms. I feel that I am handing key information to doctors and they are stumped!

Another odd symptom - after exercising I get an intense pulsating feeling in my thighs and butt. It doesn't hurt. It feels like ping pong balls popping quickly. I believe this is from blood pooling in my legs. I recently had a leg vein ultrasound and it showed that I have chronic venous insufficiency. I am currently looking into this. Worth noting, I don't have any varicose veins. I think this might be connected to my problems.

 

[Remy]

I am new to this amazing website. Cort recommended a post my "story" here and said he wanted Issie to read this and give her thoughts. I am 55 years old and have had CFS for 33 years. I have managed pretty well until 5 years ago when I started having hot flashes with perimenopause. At this time my adrenaline either decreased or I became unable to release enough. I have no increase in heart rate when I am startled. I haven't had a startle reflex for 5 years!!! Two 24 hour urine catecholamine tests show zero epinephrine and a plasma catecholamine test shows that my epinephrine decreases after standing for 10 minutes. This is NOT NORMAL! Mayo clinic said it was abnormal but didn't know what to make of it. This has caused my fatigue to increase greatly and my air hunger to increase. Interestingly, my cortisol runs high. Over the last 20 years I have had occasional air hunger and it was usually due to being in hot weather. Allergy season can bring it on too. After repeated incidents I have come to realize that air hunger is a combination of high cortisol and low epinephrine. During these episodes, when adrenaline would kick in, the air hunger would go away. This makes sense since epinephrine expands the lungs. A couple years ago I tried taking isocort a few times, since I was sure my cortisol was low because I was fatigued. This sent air hunger through the roof! Subsequent multiple testing via urine, blood, and saliva usually show high cortisol. I've tried using an inhaler and this made air hunger much worse too! Mayo clinic said that my air hunger is due to a dominant sympathetic nervous system. Autonomic testing showed that my sympathetic nervous system is dominant. I believe this is due to high cortisol, since my epinephrine is lacking. Worth noting, I have little emotional stress.

I tried Dr. Hinz's amino acid protocol to see if that would increase epinephrine. I took tons of tyrosine and mucuna and my pulse was still under 60! I believe I made a bunch of norepinephrine because I got very anxious, but no increase in epinephrine.

I know that lack of adrenaline is key to my dramatically worsening symptoms. I feel that I am handing key information to doctors and they are stumped!

Another odd symptom - after exercising I get an intense pulsating feeling in my thighs and butt. It doesn't hurt. It feels like ping pong balls popping quickly. I believe this is from blood pooling in my legs. I recently had a leg vein ultrasound and it showed that I have chronic venous insufficiency. I am currently looking into this. Worth noting, I don't have any varicose veins. I think this might be connected to my problems.

Welcome to the forums, @susan murphy!

I did Dr Hinz's amino acid protocol...gave it up in frustration after the third test showing completely contradictory results and no explanation for why that might be. I took tons of tyrosine and mucuna too!

So, have you tried any sort of NERI? That should also increase epinephrine as well as NE.

Or done a methylation panel? Or 23andme?

If you can make a ton of NE but nothing converts, it sounds like you have a problem with the enzyme that makes that conversion, PNMT. That enzyme is dependent on SAM to function...SAM donates a methyl group. So a supplement like SAMe might be worth discussing with your doctor.

COMT also plays a role in the conversion so that is where the genetics might come in handy.

Copper and/or zinc deficiencies may also play a role in the function of the methyltransferase enzymes.

Have you had your hormones tested recently?

What supplements do you currently take?

There are some supplements that may improve CVI, namely oxerutins and butcher's broom.

Wishing you well and some new directions to explore!

 

[Who Me?]

@susan murphy Welcome.

Could you please edit your post so that the first huge paragraph is broken up into more paragraphs? There are some here (me lol) who cannot read huge blocks of text.

To edit, under your post on the left there should be an edit button. Just click on that and a window with your post pops out. Just throw in bunch of paragraph breaks so there is white space then click save See how Remy broke hers up?

I won't be able to help you but I am curious to read. thanks

 

[susan murphy]

Welcome to the forums, @susan murphy!

I did Dr Hinz's amino acid protocol...gave it up in frustration after the third test showing completely contradictory results and no explanation for why that might be. I took tons of tyrosine and mucuna too!

So, have you tried any sort of NERI? That should also increase epinephrine as well as NE.

Or done a methylation panel? Or 23andme?

If you can make a ton of NE but nothing converts, it sounds like you have a problem with the enzyme that makes that conversion, PNMT. That enzyme is dependent on SAM to function...SAM donates a methyl group. So a supplement like SAMe might be worth discussing with your doctor.

COMT also plays a role in the conversion so that is where the genetics might come in handy.

Copper and/or zinc deficiencies may also play a role in the function of the methyltransferase enzymes.

Have you had your hormones tested recently?

What supplements do you currently take?

There are some supplements that may improve CVI, namely oxerutins and butcher's broom.

Wishing you well and some new directions to explore!

Hi Remy! It's so nice to speak with someone so knowledgeable! Please tell me what NERI is.

I have done the doctor's date methylation panel AND 23andme. I am working with a naturopath that trained under Dr. Lynch. I will probably do the health diagnostics research panel. I have tried taking 1600 mg of sam-e and still didn't notice an increase in epinephrine. I have searched around to find a lab that will test my level of PNMT enzyme, but had zero luck. Perhaps pnmt can't be measured in the blood.

I just bought a decaf green supplement to see if I can block some COMT. I have to be careful because caffeine will raise my cortisol and I don't want that!

I take a bunch of high quality supplements, so it is unlikely I have any blatant deficiencies.

I work with body logic on my hormones. I am getting ready to do another 4 point saliva cortisol test through zrt. I want to confirm cortisol is still high before staging an all out assault on cortisol!!!

I don't have any pain or discomfort in my legs. My only reason for looking into CFI is to see if it brings me any general fatigue relief. I will look into the 2 supplements you suggest.

Also, I don't have pain of any kind! I'm certainly grateful for that.

I am looking into ways to reset the autonomic nervous system as I am sympathetic dominant.

 

[Issie]

My first thought is Addisons. Have they checked your function and also checked for adrenal tumors? Here is an article showing how low Epinephrine can be caused by Addisons .

____________
http://www.nadf.us/adrenal-diseases/addisons-disease/
The inner part of the adrenal gland (called the medulla) produces epinephrine (also called adrenaline) which is produced at times of stress and helps the body respond to “fight or flight” situations by raising the pulse rate, adjusting blood flow, and raising blood sugar.

However, the absence of the adrenal medulla and epinephrine does not cause disease.
In contrast, the outer portion of the adrenal gland, the cortex, is more critical. The adrenal cortex makes two important steroid hormones, cortisol and aldosterone
______________
Maybe also, would look into calcium channels and possible issues with aldosterone. Along with this I'd try to find out if there is to high glutamate. I really think alot of over activation of the autonomic system and staying in sympathetic mode is due to too high glutamate and issues with dopamine.

Also there is alot of research lately in regard to autoimmune issues connecting not only with auto antibodies but also with different channel functons and receptors.

I'd have to ask you alot of questions before I could know what more could be possible. What meds and supplements you are on, what type diet are you on, what does your blood pressure and sugar look like. Do you have hikes in your heart rate with standing, drops or raises in blood pressure. Etc.....

Hard to help without the full picture. So many things can present similar. I'm not on the site much, but maybe this will give you some things to look into.

Issie


.

 

[susan murphy]

My first thought is Addisons. Have they checked your function and also checked for adrenal tumors? Here is an article showing how low Epinephrine can be caused by Addisons .

____________
http://www.nadf.us/adrenal-diseases/addisons-disease/
The inner part of the adrenal gland (called the medulla) produces epinephrine (also called adrenaline) which is produced at times of stress and helps the body respond to “fight or flight” situations by raising the pulse rate, adjusting blood flow, and raising blood sugar.

However, the absence of the adrenal medulla and epinephrine does not cause disease.
In contrast, the outer portion of the adrenal gland, the cortex, is more critical. The adrenal cortex makes two important steroid hormones, cortisol and aldosterone
______________
Maybe also, would look into calcium channels and possible issues with aldosterone. Along with this I'd try to find out if there is to high glutamate. I really think alot of over activation of the autonomic system and staying in sympathetic mode is due to too high glutamate and issues with dopamine.

Also there is alot of research lately in regard to autoimmune issues connecting not only with auto antibodies but also with different channel functons and receptors.

I'd have to ask you alot of questions before I could know what more could be possible. What meds and supplements you are on, what type diet are you on, what does your blood pressure and sugar look like. Do you have hikes in your heart rate with standing, drops or raises in blood pressure. Etc.....
Hard to help without the full picture. So many things can present similar. I'm not on the site much, but maybe this will give you some things to look into.

Issie


.

Thank you for your reply Issie! I definitely don't have Addison's since my cortisol runs high. I've seen it stated that not having the adrenal medulla doesn't cause disease. However not making ample adrenaline causes great fatigue! It might not be considered a "disease" but it causes misery!

Adrenaline has its purpose in the functioning of the body. I've had extensive autonomic testing, and all they came up with is that I am slightly sympathetic dominant. The only medicine I take is naturethroid. Interestingly when I built up the amount taken to a too high level, my heart rate stayed below 60!

I take excellent supplements and my diet is very good. I appear to make/release ample norepinephrine, so I question if I have ample PNMT. I have not found a way to test this.

I've tried taking 1600 mg sam-e, so I would think my methylation would be ample. It's possible that my autonomic nervous system isn't prompting the release of adrenaline.

 

[Who Me?]

@susan murphy @Cort

Could you please edit your post so it is broken up into more paragraphs? There are some here who cannot read huge blocks of text.

 

[Remy]

Please tell me what NERI is

A NE reuptake inhibitor...like Wellbutrin?

I work with body logic on my hormones.

Do they test sex hormones too?

Regardless of new test results, I would encourage you to look into Seriphos/phosphatidyl serine. Either way, low or high, it will help to re-sensitize your cortisol receptors and help them work optimally. If your cortisol is high, up to 2g/day may be necessary.

For reversing sympathetic dominance, well, join the club, unfortunately. So far the only thing I've found that helps at all is meditating in a chair with my legs up. But it hasn't solved the problem yet unfortunately. Something like the Emwave2 is my next stop, I think, but the reviews are kind of mixed overall.


I don't know if it's possible to test PNMT either. I kind of doubt it though. Enzymes are short lived and tricky. They are also highly temperature dependent, so I wonder if your temperature is optimal on the NTH?

You sound like you are on the right track and quite knowledgeable.

 

[Issie]

As for myself, I found addressing MCAS (mast cell activation syndrome) and using something that helps moderate glutamate (NMDA receptor) has helped my Hyper presentation of POTS.

I thought my hot flashes were connected to hormones but for me it was mast cell connected. Hormones never helped like my meds for MCAS have. For me, GastroCrom and Allegra and 1/2 Zantac has been very beneficial.

Also my best meds for high levels of NE response with standing and symptoms connected to a HyperPOTS has been Tramadol and Bentyl. I think the reason for Tramadol helping is it addresses all the neurotransmitters including NMDA. Too high glutamate and dysfunction in calcium channels can cause many issues. (There is also an issue with calcium channels in MCAS.)

Its sad we have to dig so hard for answers when our docs are stumped. But, we sure do learn alot. Hoping you find some answers.

Issie

 

[Issie]

So have you ruled out Pheochromocytoma? That's one of the first things POTS docs do when there are high NE levels with lying to standing. There is a test that can be done to check for it. (Certain way for accuracy and has to be put on ice.) Anything over 6,000 is considered a high reading on NE. I was way over that, but don't have a Pheo.

That got my subset type of HyperPOTS along with my blood pressures being more on the higher side with drops down into normal ranges (still causing orthostatic issues) severe tachycardia (probably caused by high NE helping raise my heart rate to pump blood to vital areas - heart and head.

I dont try to modify it too much as its a compensatory response of my body to try to save me.) For some reason, us HyperPOTS people (more than not) also have MCAS and EDS.

Issie

 

[Issie]

And, as @Remy mentioned, finding out your methylation mutations and then seeing if they have activated may be very helpful. I'm so glad you are going with Dr Ben Lynch as your guide. He is on target. Just because we have a mutation doesn't mean there has been a "turn on" of that mutation. Just means we are more predisposed to it activating and causing an issue. Treating things just because we are predisposed to an issue - may mess you up worse. You need to know what cycle is malfunctioning, where in the cycle the problem lies and then treat. Glad your working with someone in that area.

Issie

 

[susan murphy]

A NE reuptake inhibitor...like Wellbutrin?


Do they test sex hormones too?

Regardless of new test results, I would encourage you to look into Seriphos/phosphatidyl serine. Either way, low or high, it will help to re-sensitize your cortisol receptors and help them work optimally. If your cortisol is high, up to 2g/day may be necessary.

For reversing sympathetic dominance, well, join the club, unfortunately. So far the only thing I've found that helps at all is meditating in a chair with my legs up. But it hasn't solved the problem yet unfortunately. Something like the Emwave2 is my next stop, I think, but the reviews are kind of mixed overall.


I don't know if it's possible to test PNMT either. I kind of doubt it though. Enzymes are short lived and tricky. They are also highly temperature dependent, so I wonder if your temperature is optimal on the NTH?

You sound like you are on the right track and quite knowledgeable.

Yes, Body Logic tests sex hormones. I take a very minimal amount. It seems estrogen/progesterone aren't related to cortisol/epinephrine although my rise in cortisol and drop in epinephrine began when hot flashes began. I am currently taking seriphos and will adjust dosage after I see where my cortisol is at. Seriphos recently changed their formulation and so I'm not sure what to do after I run out of it.

I don't see why a drug such as Wellbutrin would work for me since I seem to have enough NE. My problem is converting it to E. I appreciate all your suggestions! Keep em coming!!!

Cort mentioned there is a company that is coming out with a vagus nerve stimulator this year sometime. It is supposed to increase to parasympathetic nervous system.

 

[susan murphy]

And, as @Remy mentioned, finding out your methylation mutations and then seeing if they have activated may be very helpful. I'm so glad you are going with Dr Ben Lynch as your guide. He is on target. Just because we have a mutation doesn't mean there has been a "turn on" of that mutation. Just means we are more predisposed to it activating and causing an issue. Treating things just because we are predisposed to an issue - may mess you up worse. You need to know what cycle is malfunctioning, where in the cycle the problem lies and then treat. Glad your working with someone in that area.

Issie

The autonomic testing I had done ruled out POTS. My NE response to standing was fine. It was my epinephrine that dropped when it should have raised which is consistent with how I feel.

Having allergies during hay fever season has brought on the feeling of high cortisol and low epinephrine. Do you have any idea as to what happens during the allergic response to bring on the air hunger associated with low epinephrine/high cortisol?

 

[Remy]

Yes, Body Logic tests sex hormones. I take a very minimal amount. It seems estrogen/progesterone aren't related to cortisol/epinephrine although my rise in cortisol and drop in epinephrine began when hot flashes began. I am currently taking seriphos and will adjust dosage after I see where my cortisol is at. Seriphos recently changed their formulation and so I'm not sure what to do after I run out of it.

I don't see why a drug such as Wellbutrin would work for me since I seem to have enough NE. My problem is converting it to E. I appreciate all your suggestions! Keep em coming!!!

Cort mentioned there is a company that is coming out with a vagus nerve stimulator this year sometime. It is supposed to increase to parasympathetic nervous system.

NERIs will also increase epinephrine.

Good point about the vagus nerve stimulator. There's also huperzine and galantamine that increase acetylcholine.

I switched to the 300 mg Swanson brand of PS at night and use Enerphos during the day.

Progesterone, estrogen and cortisol are definitely related. It's coincidental that the problems began with a hormone shift. Maybe it's more than coincidental?

 

[Issie]

The autonomic testing I had done ruled out POTS. My NE response to standing was fine. It was my epinephrine that dropped when it should have raised which is consistent with how I feel.

Having allergies during hay fever season has brought on the feeling of high cortisol and low epinephrine. Do you have any idea as to what happens during the allergic response to bring on the air hunger associated with low epinephrine/high cortisol?

Lots of hypothesis, not concrete.

For some reason many of us hold our breath, we forget to breathe. For me, especially with exertion. (Funny that my sis and her kids do it too.) I wonder about balance between. CO2 and O2. I think we imbalance it somehow. Then we try to correct it with hyperventilating. That desperate feeling of I can't breathe is horrible.

http://www.dannyroddy.com/weblog/thebaldnessfield
In addition to increasing the number of mast cells in a given tissue, estrogen induces mast cell degranulation releasing inflammatory agents such as histamine, prostaglandins,serotonin, and nitric oxide.[24] In contrast, carbon dioxide, which is produced under the direction of good thyroid function, inhibits mast cell degranulation.[25]
____________________
But mast cells can also cause issues with lung function and an anaphylaxis response. When this happens with me, I drink children's liquid Allegra to get it in my system fast. Sit down and try to not hyperventilate and calm the autonomic system down. Breathe through my nose and not pant. I also take extra GastroCrom. I have had that not work and had an overnight hospital stay as mast cells affected my heart - called Kounis Syndrome. Treatment is high amounts of antihistamine and nitroglycerin.

Issie

 

[Remy]

Looks like estrogen regulates epinephrine somehow too...at least in rats!

http://www.ncbi.nlm.nih.gov/m/pubmed/16026475/

 

[Remy]

Maybe Ritalin could help.

http://www.ncbi.nlm.nih.gov/m/pubmed/6727543/

 

[Issie]

Looks like estrogen regulates epinephrine somehow too...at least in rats!

http://www.ncbi.nlm.nih.gov/m/pubmed/16026475/

Yes, lots of us have gotten worse after hysterectomy. Yet don't tolerate replacement hormones well. Only estrogen I could use was Estriol. And forget progesterone - severe hot flashes from it. Interesting, I had endometriosis and appeared to be estrogen dominant and low in progesterone but couldn't use it, not before or after my hysterectomy.

I thought this may interest you.
http://mastocytosisaustralasia.com/resources/role-of-female-sex-hormones-in-mast-cell-behavior/

You may also look at a possible connection with NO (nitric oxide).

And possible issues with Kyrienine pathways.

The biggie may be MCAS and too high glutamate and possible dopamine imbalance. (For me, Wellbutrin and any SNRI or SSRI was a horrible experiment. Made everything worse. Blocking NE receptors to increase already too high levels---- not a good idea.) Got so much worse. Doc thought I had Multiple System Atrophy. (This was before it all got figured out. I'm still alive in spite of her giving me a death sentence and she thought I had Lewy Body issues starting - hope not! My first DX from her was Parkinson. I was one more sick puppy. Mayo to the rescue.)

I'm going to throw this out there for you to consider - mold toxicity can increase glutamate. When I had an extended exposure, I crashed and everything came back in full force. It was then discovered I had a type of fungus/mold that can cause tumors. (Along with Lyme and Protomyzoa Rehumatica. ) Detoxing and treating these organisms is making a huge difference for me.

Here's some slides from a seminar Dr Lynch gave from one of his speakers on mold.

https://seekinghealth.org › 2016/04

Issie

 

[Issie]

You might reread my post above as I added more to them.

I'm excited.....just learned something. Co2 can inhibit the release of calcium and help prevent mast cell degranulation.

http://onlinelibrary.wiley.com/doi/10.1111/j.1398-9995.2010.02482.x/pdf

Makes me wonder if the reason I hold my breath with exertion is to create more CO2 and prevent mast cell degranulation - as exercise will trigger it. Hmmmmm......more research needed. If I hyperventilate, it makes things worse and I'll have a full out POTS and MCAS attack. If I can calm my breathing and not over breathe oxygen - I'm better. I'm normally a shallow breather, as a whole.

Issie

 

[Remy]

You might reread my post above as I added more to them.

I'm excited.....just learned something. Co2 can inhibit the release of calcium and help prevent mast cell degranulation.

http://onlinelibrary.wiley.com/doi/10.1111/j.1398-9995.2010.02482.x/pdf

Makes me wonder if the reason I hold my breath with exertion is to create more CO2 and prevent mast cell degranulation - as exercise will trigger it. Hmmmmm......more research needed. If I hyperventilate, it makes things worse and I'll have a full out POTS and MCAS attack. If I can calm my breathing and not over breathe oxygen - I'm better. I'm normally a shallow breather, as a whole.

Issie

What's your CO2 level on a CMP?

Mine's always low.