What helps with constant adrenaline? Anybody have adrenal disorder?

[CallieAndToby]

So back in 2007 I went through a period of remission and then in 2008 I started having adrenaline / flight or fight all the time, 24/7 and it lead to me being bed bound. I couldn't sleep at all during that time and I was just put on massive amounts of sleep meds trying to finish school. Well fast forward to last year, after taking the cancer medication which was just a massive immunosuppressant that I took last year for 3 months, the adrenaline has started back and it was on and off when getting off of it but now I'm bed bound and the adrenaline is 24/7 and I can't stop it and I'm too sick to do anything. I'm in perma crash and exhausted and can't sleep. The beta blocker doesn't help, klonopin doesn't help, increasing sleep meds doesn't help. I will be getting some endocrinology labs done soon. With my testosterone as high as it is I believe this is some disorder of the adrenal glands, PCOS just doesn't fit, but reading about overactive adrenals on the NIH health website and all the conditions just fits. I'm just wondering if there is something I can do in the mean time just to be able to make it to appointments etc. to calm down my adrenals? I do have a psychologist I talk to on the phone but he's just a moral support at this point. Saline iv's help which isn't an option right now. Recent labs did show my folate is very very low and I do have the MTHFR genetic mutation, so I'm thinking about starting on methyl folate + B12 again just get side effects (just mentioning it b/c don't know if it has something to do with all of this). Maybe I'm posting in the wrong forum, just let me know, I've deleted all social media at this point. 

[Jeanee H]

       My only diagnosis happened when I showed my doctor that a list of my symptoms or “issues” ( from past ten years of treatment at that practice) when googled together in a list caused several dysautonomia based sites , blogs and definitions to come up.  I have mitral valve prolapse , low blood pressure, ptsd, presyncope , tachycardia unrelated to activity except bending over almost always sets it off, and an inability to maintain my temperature especially above 80 degrees, the reaction being turning into a human waterfall.  The most frustrating thing on my list was adrenal activity for no reason. Just comfortably reading a silly book in the evening I’d suddenly get flushed and hyper with fight or flight like I was really in danger.  It seemed by my investigation of dysautonomia sites that I actually was pretty mild except for the drenching sweat in the heat, because I would return to normal with in about 30 minutes.

         The reason I’m asking for input is that I just started getting pins and needles sporadically all over. I looked it up and the DINET site was listed. Oh my, dysautonomia again!  I retired from a very stressful but fulfilling job teaching art in an inner city school a , sold my big empty nest and moved to an old country cottage a few years ago. My symptoms lessened and I thought it really had been stress. Now I’m symptomatic again so ... what? My new GP is clueless. Am I understanding this??? Dysautonomia  can come and go?

[Pistol]

@Jeanee H welcome to the forum! Yes - dysautonomia comes and goes in many cases. For many people the symptoms get triggered, by different triggers, infections, stress, major life changes, hormonal changes, moving to a different elevation ... there are so many causes for flares! I know of some people that only get symptomatic when pregnant, or only during certain seasons. Often the trigger cannot be pinpointed, and other times we know exactly when the symptoms returned. 

I am so sorry that you are having troubles again! Were there any medications that helped you before? My autonomic specialist told me that POTS can change as we age, and as our bodies change so can the illness. 

[Jeanee H]

Thanks for your reply.  I was on Prozac for a few years because of stress caused by my son going deaf. The good news is I got him into neurofeedback training to help maintain his cognitive function and four years later his hearing came back!
‘I believe the Prozac helped me feel calmer when i was triggered but other wise I had some of the worst episodes of vertigo and heat intolerance during the time I was on it. Since my mvp was mild and my heart was healthy I was never treated for the weird tachycardia. I have allergic congestion but I stay away from pseudoephedrine and also caffeine that makes pots worse.  I keep up with a cardiologist, I take coQ10 100 ml a day and hawthorn Gaia brand between meals. Also the regular heart healthy vitamins  and oils. I’m 68 so I’m used to physical changes. I just didn’t know these symptoms could come and go.

I want to share that my sons otolaryngologist speculated that his otic  nerve growth had been interrupted by a sudden big growth spurt in 5th grade but the stimulation from the Tomatis method of hearing and cognitive work caused it to keep growing until it reconnected with his ear. I tell this because he had a hearing aid for all those years then over a few months broke it constantly trying to adjust because his hearing was coming back! There are many things that can help us heal that we don’t know about until we go searching for help. It seemed like a miracle   ... it also was science! 

[Pistol]

@Jeanee H - since you mention low BP and tachycardia: are you increasing your fluid and salt intake? This is the most important self treatment we can do for both symptoms, dysautonomia or not. Also compression hose can greatly improve the symptoms you mention. 

[Amy Kann]

I had the adrenaline issue twenty years ago when my POTS was severe. It was the worst part of the illness. I went on gabapentin 400 mg 3 times a day. It has felt sort of like a central nervous system soother. It’s off label but it was a miracle cure for me.  I built up super slowly-100 mg at a time. Too fast isn’t good. It stopped the adrenaline issue for me. I’ve never gone off it even though my POTS got better- because the adrenaline issue was so hideously unbearably life altering, that I’ve been afraid to risk having it return. I feel for you. I hope you continue to try ways to treat the adrenaline. I think there is an answer out there for you. All my best wishes. 
Amy

[CallieAndToby]

2 hours ago, Amy Kann said:

I had the adrenaline issue twenty years ago when my POTS was severe. It was the worst part of the illness. I went on gabapentin 400 mg 3 times a day. It has felt sort of like a central nervous system soother. It’s off label but it was a miracle cure for me.  I built up super slowly-100 mg at a time. Too fast isn’t good. It stopped the adrenaline issue for me. I’ve never gone off it even though my POTS got better- because the adrenaline issue was so hideously unbearably life altering, that I’ve been afraid to risk having it return. I feel for you. I hope you continue to try ways to treat the adrenaline. I think there is an answer out there for you. All my best wishes. 
Amy

Thank you for your response. I have severe POTS. Seems like the adrenaline does have in big part to do with dysautonomia. I have some gabapentin but didn't try it for long b/c I found it to be sedating. It seems worth a try b/c I'm in pain as well. Thank you for your response. 

[E pots]

9 hours ago, Amy Kann said:

I had the adrenaline issue twenty years ago when my POTS was severe. It was the worst part of the illness. I went on gabapentin 400 mg 3 times a day. It has felt sort of like a central nervous system soother. It’s off label but it was a miracle cure for me.  I built up super slowly-100 mg at a time. Too fast isn’t good. It stopped the adrenaline issue for me. I’ve never gone off it even though my POTS got better- because the adrenaline issue was so hideously unbearably life altering, that I’ve been afraid to risk having it return. I feel for you. I hope you continue to try ways to treat the adrenaline. I think there is an answer out there for you. All my best wishes. 
Amy

What were your adrenalin issues if you don't mind me asking?  I take propranolol but its not enough...in bad flare.  I'm having cramps. Twitches. Tremors. Sleeplessness and feel adrenalin still even with propranolol.  Before propranolol heart palpitations irregular high. Tingles in extremities. So bad.  I have an appt with a nurse practitioner and don't know if I should ask for something

[Jeanee H]

16 hours ago, Pistol said:

@Jeanee H - since you mention low BP and tachycardia: are you increasing your fluid and salt intake? This is the most important self treatment we can do for both symptoms, dysautonomia or not. Also compression hose can greatly improve the symptoms you mention. 

I’m not sure how to use reply. I am very aware of my salt intake! When I lived in south Japan there were salt dispensers by the water fountains in the Summer .  I knew I felt better when I ate my regular diet with lots of salty peanuts and soy sauce with sushi! It’s like a treat to me to be able to eat as much salty foods as I want. I would say that it’s very important to take coQ10. It’s the major enzyme of energy transfer in the heart and liver. CoQ’s are in foods, your body is supposed to match up coQ4 AND coQ6 to make ten but some people don’t do it very well. It builds up on receptors so it’s one of those supplements that take a couple months to get to maximum help levels. coQ10 is the #1 prescription for heart conditions of any kind in Germany and Japan. They are medically ahead of USA. I learned about it when it was in a New Yorker article about “don’t mess with Texas”. FDA tried to take it off the health supplement shelves with other supplements. People taking it for heart conditions called their senators and FDA actually brought it back to stores! I got a book on it because my dad had atrial fibrillation and was being hospitalized a couple times a month. In three months of use he stopped having attacks, 100mg coQ10 a day. When I’m really good about taking it my tachycardia almost goes away. Hawthorn extract I discovered in a book in my doctors office. I was getting ready for surgery for endometriosis and paging through his book called TOTAL WELLNESS, I found out about patients with congestive heart failure who had recovered so much after the addition of Hawthorn extract that they were able to go off heart transplant list! Gaia brand makes a potent liquid capsule of complete extract. It works so well to keep my heart from racing when I exercise. Every time I slack off I feel weaker and make sure I go back on it. It too is prescribed in Germany. 

[Jeanee H]

One of the things on my original list of issues was migraines. I went to a neurologist  who set me up for allergy testing.

‘In the elimination diet for migraine was avocado. I ate them all the time. When I eliminated then put back, migraines stopped then returned. So no more avocado. I’m not as sensitive to it but dark chocolate will trigger migraines for me too. When I get a migraine I get tachycardia and adrenaline flares. I had a complete food allergy test done too. The elimination diet proved I have no tolerance for citrus except limes, really allergic to corn except blue corn chips and allergic to beef. I feel like I have the flu if I eat any of them. I’m sure knowing what my body rejected as food helped me very much.

 

[CJ65]

@CallieAndToby22 gosh that sounds so awful! Forgive me if you already said this but have you had catecholamine levels tested? I can’t remember if you said you have hyperandrenergic POTS but those surges you mention are common with HPOTS. And have you ever been on one of the alpha 2 agonists like Clonidine or Guanfacine? They are so integral to controlling adrenaline/noradrenaline surges for me personally. Other adrenal work up might involve a urine VMA test, imaging your adrenals to rule out pheochromocytoma etc but maybe you’ve already done all that when you were first diagnosed? 

[CallieAndToby]

16 minutes ago, CJ65 said:

@CallieAndToby22 gosh that sounds so awful! Forgive me if you already said this but have you had catecholamine levels tested? I can’t remember if you said you have hyperandrenergic POTS but those surges you mention are common with HPOTS. And have you ever been on one of the alpha 2 agonists like Clonidine or Guanfacine? They are so integral to controlling adrenaline/noradrenaline surges for me personally. Other adrenal work up might involve a urine VMA test, imaging your adrenals to rule out pheochromocytoma etc but maybe you’ve already done all that when you were first diagnosed? 

I wasn't able to do the testing properly because the lab did it incorrectly. I live in a small city and the hospital only accepts one insurance, not the one I have. I need a lot of testing, all I've ever had was a TTT. I tried guanfacine and it made me very lethargic, fatigued, caused terrible insomnia but it did help the issue. I have very low blood pressure so it made that a lot worse. I hear mestinon can be good for this but I still don't have an autonomic doctor, I'm on several waiting lists for a long time.

[CJ65]

Ok got it. The catecholamine tests are very hard to get right at lab. The first time I had them drawn I talked a very nervous nurse through how to do it and thought we were golden…until I found out she put it in the wrong tube! Waiting to see an autonomic specialist feels like an eternity and IS with the backlog, hoping you get some answers and relief soon. I’m guessing by your low BP that an alpha agonist may not be what you need so I apologize for suggesting that. The good news is there are so many things still to try. 

[toomanyproblems]

I would think a 24 hour urine for catecholamines would be easier for them to do and more available in labs than a sitting (or lying) and standing norepinephrine level. You may not catch the norepinephrine increase if it's too limited but if you do, it tells you something. So a negative may not rule out increased norepinephrine but if you get a positive you have an answer.

As to the OP's question: I have longstanding primary adrenal insufficiency (Addison's) for over 30 years. Since my adrenal glad is at least partially destroyed, I asked my endocrinologist why I was still producing adrenaline. She said that part of the adrenal glad was always preserved in her experience. So it appears unless you have pheochromocytoma, which untreated might advance fairly quickly (IOW you wouldn't have it for many years without knowing), I'm not aware of any other primary adrenal disorder that would cause increased adrenaline.  

[CallieAndToby]

20 hours ago, CJ65 said:

Ok got it. The catecholamine tests are very hard to get right at lab. The first time I had them drawn I talked a very nervous nurse through how to do it and thought we were golden…until I found out she put it in the wrong tube! Waiting to see an autonomic specialist feels like an eternity and IS with the backlog, hoping you get some answers and relief soon. I’m guessing by your low BP that an alpha agonist may not be what you need so I apologize for suggesting that. The good news is there are so many things still to try. 

Thanks. Yea the women had no idea at the lab how to do this testing and I really didn't either. But I can't sit or stand more than 7 minutes and I can't walk around so I don't know that this is an option. After I attempted to at least sit for 30 minutes they told me I was free to go and I said, "you have to draw blood again" then after awhile they had me lay back down to draw blood, it was a nightmare. But like I said the hospitals here really only cater to their employees getting to use their labs with the expensive insurance.   

[CallieAndToby]

19 hours ago, toomanyproblems said:

I would think a 24 hour urine for catecholamines would be easier for them to do and more available in labs than a sitting (or lying) and standing norepinephrine level. You may not catch the norepinephrine increase if it's too limited but if you do, it tells you something. So a negative may not rule out increased norepinephrine but if you get a positive you have an answer.

As to the OP's question: I have longstanding primary adrenal insufficiency (Addison's) for over 30 years. Since my adrenal glad is at least partially destroyed, I asked my endocrinologist why I was still producing adrenaline. She said that part of the adrenal glad was always preserved in her experience. So it appears unless you have pheochromocytoma, which untreated might advance fairly quickly (IOW you wouldn't have it for many years without knowing), I'm not aware of any other primary adrenal disorder that would cause increased adrenaline.  

Thank you for the informed response it does seem like a 24 hour urine would be the best way to test. 

Well when I had the labs drawn for testosterone it said that adrenal hyperplasia was a possibility, CHP, so that is a primary adrenal disease that causes the adrenaline. There is also "adrenal PCOS". I will keep posted when I get full testing back. 

[toomanyproblems]

 

2 hours ago, CallieAndToby22 said:

Well when I had the labs drawn for testosterone it said that adrenal hyperplasia was a possibility, CHP, so that is a primary adrenal disease that causes the adrenaline. There is also "adrenal PCOS". I will keep posted when I get full testing back. 

Yes, you're right. I forgot about adrenal hyperplasia and Cushings. PCOS seems not very well understood at all levels.

[CallieAndToby]

On 6/8/2021 at 9:13 AM, toomanyproblems said:

 

Yes, you're right. I forgot about adrenal hyperplasia and Cushings. PCOS seems not very well understood at all levels.

Thanks for the response. Yes I'm very dismayed right now the PCOS makes sense (random weight gain, acne, hair) but I just didn't expect one more diagnosis....... 

There was a young guy that was bedridden for 10 years and he figured out what was wrong himself but I think he had a degree that leant itself to that discovery, but he said he would be lying down and put a sheet of paper on his chest and it was flapping wildly from his HR so high and it turns out he had tumors inside of his adrenal glands. He got doctors on board then they said, "well we don't know how to do surgery" and he found one surgery done on rats using a spoon to remove it and they went ahead with him and he was cured. I forget his name but he worked with a doctor at UAB who is now retired and he also said his grandmother and mother were exhausted all the time and in bed all the time so I guess I'm mentioning this because tumors outside and inside of the adrenal glands are also known to cause problems but in his case it seems hereditary or maybe genetic? Very sad what he went through but glad he's better. 

[Amy Kann]

On 6/6/2021 at 8:15 PM, E pots said:

What were your adrenalin issues if you don't mind me asking?  I take propranolol but its not enough...in bad flare.  I'm having cramps. Twitches. Tremors. Sleeplessness and feel adrenalin still even with propranolol.  Before propranolol heart palpitations irregular high. Tingles in extremities. So bad.  I have an appt with a nurse practitioner and don't know if I should ask for something

I had extreme panic. I often couldn’t see very well because I felt so disoriented. My hands would sweat and and I felt like something was about to kill me for many hours during the day. Honestly it was terrifying and the worst suffering I’ve ever had. Ive been told that no st panic attack last under 5 minutes but mine lasted for hours everyday. I started gabapentin at 100 mg at bedtime and after a week added 100 at lunchtime. Then slowly kept progressing until a found relief at 400 mg 3 times a day. Initially it made me tired and gave me a headache but I would pull back on the dosage until I felt better and then ramp up again. It was a process. I feel like myself on it. No panic-just me without panic. It doesn’t make me tired or have any negative symptoms. I think of it as a central nervous system soother. For me it’s been a life saver. I hope this information helps. I’m so sorry you have this awful issue. 

[CallieAndToby]

So just wanted to update that my lab results came back this morning and it is not indicative of PCOS. So my "testosterone bioavailable" is very high but my "androsterone serum" is too low. So androsterone deficiency can cause the following symptoms (based on a few articles I read): Extreme tiredness, loss of muscle mass and strength, loss of libido, loss of motivation, low well being and lowered mood. I really haven't slept much in the past month and for me it's just this constant state of adrenaline so something that keeps popping up with these results is congenital adrenal hyperplasia  and overactive adrenal glads, it also mentions causes such as: ovarian failure due to medication like chemotherapy, adrenal insufficiency, hypopituitarism, hyperprolactinaemia.. the others don't apply because they mention loss of menstrual cycle and I haven't had any issues with that. Everything else came back normal for PCOS testing. 

[CallieAndToby]

Telemed appointment with endocrinologist was a bust. She freaked out b/c the testosterone is so high and said it could be ovarian cancer or adrenal cancer then she said she needed to do more blood work in 2 months and didn't feel like she needed to do any scans right now. What?????? She told me I needed to sleep and lectured me and I told her that I take a ton of pills and do everything I'm supposed to and I can't and she starts talking about psychiatry and I told her it was physiological and had to explain autonomic dysfunction. She couldn't understand constant adrenaline and kept calling it anxiety and I kept correcting her and telling her it was adrenaline. She wanted to put me on a blood pressure medication for acne and facial hair and I asked her if it lowered blood pressure and she said YES then proceeded to ask me why that was a problem after I explained OI and POTS. 

[Jyoti]

1 hour ago, CallieAndToby22 said:

She couldn't understand constant adrenaline and kept calling it anxiety and I kept correcting her and telling her it was adrenaline.

Oh my....how incredibly upsetting and frustrating.  If you have to explain dysautonomic dysfunction, you are already in dangerous territory.  This one sounds like worse than a bust.  Walk, no run (you have loads of adrenaline, right) as fast as you can in the other direction!

You have probably considered this (follows in a bit), but I happened on this thread because I am trying to make sense of a lot of adrenaline in my life.  My illness started with exhaustion followed by an absolute inability to sleep.  Or stay asleep. I'd be awakened at all hours if I was lucky enough to fall asleep by what felt distinctly like a surge  of adrenaline.  

Over the years, some kinder doctors thought it was cortisol, and maybe sometime it was.  Much was done to modulate the cortisol,  but I have felt extremely wired but tired for years now.  It never ends.  I too take tons of stuff just to get the minimal amount of sleep I can.  

Recently I have seen a dysautonomia specialist who thinks I have  both  POTS and NMS, but most of my symptoms come from the latter.  This has been surprising to me since I have never  fainted.  But I guess I come really close about  12-15 times a day. Yesterday I got results of a catecholamine test (what a trip with the tech, like everyone else who has done this!) and  finally put together that I am on a grand see-saw multiple times each day:  blood pressure dropping precipitously, coming really close to fainting (and of course I have developed a long list of countermeasures, mostly unconsciously) and then my body releases masses of adrenaline in a last ditch attempt to keep me from keeling over.  My epinephrine is high supine (and I do have pre-syncope while lying down) and super high upright.  

So...I offer this as yet one more thread to consider if you have not already.  Which is the greater likelihood. 

Glad no PCOS for you @CallieAndToby22.  One small mercy.

[Pistol]

1 hour ago, Jyoti said:

Recently I have seen a dysautonomia specialist who thinks I have  both  POTS and NMS

 

1 hour ago, Jyoti said:

 My epinephrine is high supine (and I do have pre-syncope while lying down) and super high upright

\Hello @Jyoti I have HPOTS and NMS, and I also have resting AND upright elevated Norepinephrine levels! I used to faint several days a week from NMS, and take seizures from HPOTS ( NMS = low BP, seizures = high BP ). 

[CallieAndToby]

7 hours ago, Jyoti said:

Oh my....how incredibly upsetting and frustrating.  If you have to explain dysautonomic dysfunction, you are already in dangerous territory.  This one sounds like worse than a bust.  Walk, no run (you have loads of adrenaline, right) as fast as you can in the other direction!

You have probably considered this (follows in a bit), but I happened on this thread because I am trying to make sense of a lot of adrenaline in my life.  My illness started with exhaustion followed by an absolute inability to sleep.  Or stay asleep. I'd be awakened at all hours if I was lucky enough to fall asleep by what felt distinctly like a surge  of adrenaline.  

Over the years, some kinder doctors thought it was cortisol, and maybe sometime it was.  Much was done to modulate the cortisol,  but I have felt extremely wired but tired for years now.  It never ends.  I too take tons of stuff just to get the minimal amount of sleep I can.  

Recently I have seen a dysautonomia specialist who thinks I have  both  POTS and NMS, but most of my symptoms come from the latter.  This has been surprising to me since I have never  fainted.  But I guess I come really close about  12-15 times a day. Yesterday I got results of a catecholamine test (what a trip with the tech, like everyone else who has done this!) and  finally put together that I am on a grand see-saw multiple times each day:  blood pressure dropping precipitously, coming really close to fainting (and of course I have developed a long list of countermeasures, mostly unconsciously) and then my body releases masses of adrenaline in a last ditch attempt to keep me from keeling over.  My epinephrine is high supine (and I do have pre-syncope while lying down) and super high upright.  

So...I offer this as yet one more thread to consider if you have not already.  Which is the greater likelihood. 

Glad no PCOS for you @CallieAndToby22.  One small mercy.

Thanks for your response. I am just emotionally and physically drained. I have looked up dysautonomia and high testosterone and the dysautonomia international website says that they are not connected and if it's high it needs to be investigated; it's hard because I did reach a place in my life where I'd accepted where I was with my health and I was doing my best, then a new diagnosis appeared and cancer medication destroyed my health in a way that I never could have imagined. 

[CallieAndToby]

I just wanted to update because this is getting weirder and weirder. So my testosterone tested normal most recently but DHEA tested extremely high and has tested high in the past like 10 years ago. 

I did 24 hour urine for catecholamines and the epinephrine is way too low and the neurepinephrine is barely in range so the E+N total was way too low. 

I'm very confused because my mom sees I have this constant adrenaline and then I'm barely sleeping these days. I have a good endocrinologist fellow at Mayo but I'm so concerned like what is going on?