What helps with constant adrenaline? Anybody have adrenal disorder?

[Rexie]

You might find the topic of cortisol dysfunction of interest:

Chronic Stress, Cortisol Dysfunction, and Pain: A Psychoneuroendocrine Rationale for Stress Management in Pain Rehabilitation, Kara E. Hannibal and Mark D. Bishop, Phys Ther., Vol. 94(12), pp. 1816–1825; 2014

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4263906/

For 40 some years I have had adrenal insufficiency and took hydrocortisone for low blood pressure, etc. every day. It has gotten much better the last few years with better nutrition, better pain management (I switched from bacopa herb to 50 mg tramadol, half in the morning/half in the evening) and the herbs I take. Now I only use hydrocortisone as needed for blood pressure drop during illness, interstitial cystitis flare (too much vitamin C is a killer for me, the max per day I can have is about 30 mg Vit C - one needs only 10 mg Vit C/day or less to prevent scurvy), heat stress, or life stresses. 

 

[CallieAndToby]

15 hours ago, Rexie said:

You might find the topic of cortisol dysfunction of interest:

Chronic Stress, Cortisol Dysfunction, and Pain: A Psychoneuroendocrine Rationale for Stress Management in Pain Rehabilitation, Kara E. Hannibal and Mark D. Bishop, Phys Ther., Vol. 94(12), pp. 1816–1825; 2014

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4263906/

For 40 some years I have had adrenal insufficiency and took hydrocortisone for low blood pressure, etc. every day. It has gotten much better the last few years with better nutrition, better pain management (I switched from bacopa herb to 50 mg tramadol, half in the morning/half in the evening) and the herbs I take. Now I only use hydrocortisone as needed for blood pressure drop during illness, interstitial cystitis flare (too much vitamin C is a killer for me, the max per day I can have is about 30 mg Vit C - one needs only 10 mg Vit C/day or less to prevent scurvy), heat stress, or life stresses. 

 

Thank you. Yes at the moment I'm not getting any pain management. I have terrible IC too. Vitamin C makes me very sick taken in vitamin form, I get extremely ill in my entire body but not sure why. I can only get it from normal sources of food but fruit is mostly off limits though I can handle sips of mango juice and small amounts of blueberries or melon every once in awhile. I will definitely read this article! I'm sorry you've dealt with this for so long. I guess it's still a mystery why my testosterone and DHEA are extremely high after many blood tests. 

[Rexie]

You wrote: “I'm sorry you've dealt with this for so long.” Thanks, that was sweet and so rarely heard. 

The cortisol dysfunction article provides a little more depth to understanding the often-mentioned adrenal exhaustion chronic conditions seem to promote. 
For you, finding pain relief to aid a more comfortable and active life seems to be a huge issue. 

I have used bacopa herb for pain and it is on par with tramadol and legal. I stopped taking bacopa and herbal bladder support products (except my beloved Prelief) a few months ago after freaking over a bout of diverticulitis discovered during an ER visit for not being able to eat (I would have never have thought diverticulitis). I’d been altering diet to more whole grains and fruit while taking increasing amounts of bacopa for pain which all made digestive quicker than normal (only 9% of users report digestive upset). I’m sure you’d feel better if you could slowly become more active. You also have a pretty nice and convenient medical marijuana program in Florida – cannabis is great to take the edge off neuromuscular and IC pain [in my state the medical marijuana program is primitive and complicated]. 

IMO, I wouldn’t worry too much about DHEA levels (it helps produce testosterone). DHEA peaks at your age and can become elevated during the early stages of adrenal fatigue or during times of stress where it is helpful response. For you, I do worry about too much physical, mental, and emotional stress. 

I love my integrative PCP and my endocrinologist, both women have been totally supportive while the autonomic specialist hasn’t been much help in managing symptoms of dysautonomia. Find a doctor or doctors you can work with on your individual problems.
 

[annatino]

On 6/6/2021 at 10:29 AM, 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

Hi Ami.

Are you still on Gabapentin?

I just started few days ago 100mg TDI and I am scared of the withdrawals. 
 

I am also taking 100mg Zoloft for past month and 1.5mg Ativan and Remeron 15mg for sleep. 
 

I have had the worst year of panic attacks and adrenaline rush and these meds seem to help me.

I am also starting HRT very soon because of my perimenopause at 45.

 

[JennKay]

@CallieAndToby -- please keep us updated on what you find out about the low E, N and E + N levels. I am like you, my metanephrines were low or undetectable as was my 24 hr catecholamine urine analysis. Yet, I struggle with adrenaline surges, mainly b/w 2am - 4am almost daily. I started taking propranolol before bed and this has helped, but still hasn't fully eliminated the issue. I always wondered why my N and E levels were low with my maim symptoms - adrenaline surges and ectopics. 

[JennKay]

@DysautonmiaMatt -- Thanks! I do think my cortisol was tested about a year ago. It was a morning blood draw and I believe it was normal. I have worn several long term Holter monitors. Am hoping to get results back on my latest one soon. I was referred to an endo and he thought I was going to have Addison's but after meeting he said he didn't think that was it either. I suspect a hormone imbalance is the main culprit for me, though. Not sure if a bunch of hormones are a little bit off or if one is the main driver. I have always struggled with hypoglycemia, which I know can cause adrenaline surges. I think the low blood sugar may be responsible for my 2-4am adrenaline surges. I am also about to see an integrative gyno who recently tested my female hormones. I registered as having postmenopausal levels of progesterone and I'm in my mid-30s! I know progesterone calms the ANS and this month I have felt better post-ovulation. I suspect I haven't been ovulating regularly, leading to low progesterone, which then causes my symptoms to flare. Am hoping to start progesterone to see if this helps. Definitely not excited about menopause if progesterone is an issue for me...

[JennKay]

@DysautonmiaMatt -- thanks for sharing that link! It was actually my normal obgyn who ran the tests. I contacted him b/c I was so desperate for answers and he ordered cortisol and a few other hormones but not the female hormones for whatever reason. My 24hr urine 5HIAA test was slightly elevated as was my vasoactive intestinal peptide (VIP). This meant a consultation with gastro and an abdominal MRI with contrast to rule out VIPoma and carcinoid tumors. The MRI came back all clear, which was a big relief. Then, I was referred to my endo after asking my primary provider for guidance. I've seen in the archives here that elevated serotonin is not uncommon in POTS/dysautonomia and I've seen at least a few others on here with elevated VIP. I don't think anyone really has answers. I feel like I read somewhere that the vagus nerve can stimulate the release of VIP, which I guess would make sense in my situation as I think my parasympathetic side is a bit more dominant. I have always, since my teenage years, had issues with standing for long periods. I get lightheadedness and can't think straight until I sit and rest.

[JennKay]

@DysautonmiaMatt -- yes, I should probably consider seeing a chiropractor. I mean, at this point I am open to trying almost anything w/n reason! My main goal at the moment is finding an antiarrhythmia agent, preferably a beta blocker, that helps to eliminate the majority of the PVCs I experience. I am taking propranolol now, and this helps a lot with my other symptoms, but not the ectopics for whatever reason. I tried metoprolol and atenolol previously and they definitely made things worse. I am going to ask about trying Coreg after my latest monitor report is returned since other members of the community have had success with it. Fingers crossed Coreg might be the right beta for me! 

[MikeO]

10 hours ago, JennKay said:

I am going to ask about trying Coreg

I have done pretty good with Coreg. IMO much better than Metoprolol. Even been i get mildy tachy i don't notice the palpitations as much (they are not as strong) I do still occasionally get some PVC's with the compensatory pause but no rashy runs.

Good Luck!

[RecipeForDisaster]

On 6/3/2022 at 7:53 AM, JennKay said:

@CallieAndToby -- please keep us updated on what you find out about the low E, N and E + N levels. I am like you, my metanephrines were low or undetectable as was my 24 hr catecholamine urine analysis. Yet, I struggle with adrenaline surges, mainly b/w 2am - 4am almost daily. I started taking propranolol before bed and this has helped, but still hasn't fully eliminated the issue. I always wondered why my N and E levels were low with my maim symptoms - adrenaline surges and ectopics. 

Me too. I was sure those levels would be through the roof with how I feel. Nope!

[ramakentesh]

Interestingly after ten years of having what i would describe loosely as 'zombie POTS' where i just felt terrible OI and dizziness, fatigue etc which responded quite well to midodrine and florinef, last year my POTS did a complete 180 degrees and hit me with the most intense hyperadrenergia ive ever experienced in 18 years of POTS on and off. It went on for 6 and then 15 days of solid daily BPs of 180/110 and HRs of 140 and it was utterly horrendous. 

I was climbing the walls and actually felt like I was mentally losing it from the constant feeling of panic. And I have absolutely no idea why it went that way after over a decade of a fairly stable presentation with relapses and remissions. 

Pretty much threw out all of the past research I had read about the causes of POTS - made me start to think it may be more of a spectrum or something; or perhaps sometimes it just swings the other way for what ever reason. 

So now Im on clonidine and its been very helpful for me although it promotes OI but I kind of prefer dizziness to feeling so wired I cannot sleep and startle all day at birds etc.

[RecipeForDisaster]

4 hours ago, ramakentesh said:

Interestingly after ten years of having what i would describe loosely as 'zombie POTS' where i just felt terrible OI and dizziness, fatigue etc which responded quite well to midodrine and florinef, last year my POTS did a complete 180 degrees and hit me with the most intense hyperadrenergia ive ever experienced in 18 years of POTS on and off. It went on for 6 and then 15 days of solid daily BPs of 180/110 and HRs of 140 and it was utterly horrendous. 

I was climbing the walls and actually felt like I was mentally losing it from the constant feeling of panic. And I have absolutely no idea why it went that way after over a decade of a fairly stable presentation with relapses and remissions. 

Pretty much threw out all of the past research I had read about the causes of POTS - made me start to think it may be more of a spectrum or something; or perhaps sometimes it just swings the other way for what ever reason. 

So now Im on clonidine and its been very helpful for me although it promotes OI but I kind of prefer dizziness to feeling so wired I cannot sleep and startle all day at birds etc.

So interesting. I have features of both, symptom wise. I am easily startled and it can be dramatic - but I’m calm and drowsy. No one will let me try clonidine, partly due to my low BP - but I can’t sleep. I’m really hoping this is all due to some antibody or autoimmunity and IVIG will help (hurry up!).