Adrenaline spikes: Med detective needed, award given

Posted by sierrawoods @sierrawoods, Feb 20, 2018

I'm desperate for help. If I was rich, I'd pay a million $ to get answers. It's hard to summarize: I am a 59 yr old woman. 8 yrs ago I started having what feels like strong adrenaline rushes during the night and especially in the early morning. They disrupt my sleep making me severely sleep deprived. It used to happen a few times a month but in the last year, has been happening daily. This is not as simple as anxiety. My life is not particularly stressful compared to years ago and I've always handled stress well. Physical symptoms come first, then anxiety from adrenaline comes after. On rare days, If I sleep through the night, I wake with excess adrenaline and will be hyper the whole day and evening. Sometimes, I will have a severe "crash" in the afternoon with all kinds of symptoms that have me couch-bound. I take a tiny dose of Amitriptyline (10 mg) before bed to help with sleep, but it's obviously not working well enough. I am on Synthroid for non-Hashimoto's Hypothyroidism since 1996. Despite being 59 yrs old, I am not yet officially in menopause (last period was May 2017). TSH, fT4, fT3 are normal. Urine catecholamines (epinephrine & norepinephrine) are normal (although that does not necessarily reflect what is in the brain). Plasma ACTH is normal. I've tested negative for autoimmune disorders. Cortisol was high a few years ago (34.3 mcg/dL) but it's currently high-normal. DHEAS normal. Accompanying the start of this was phantosmia and occasional RLS. My diet is excellent, including a few good supplements. Until last yr when it started happening daily, I was exercising 6 days/wk. I cannot tolerate it any more - any exercise beyond mild cardio/aerobic causes an increase in symptoms. I meditate and have tried all kinds of herbal teas. I've experimented with different possible solutions, to no avail. I'm a voracious researcher (only legit sites) and still cannot figure this out. I'm normally a positive, active, happy person who loves to help others but this is ruining my life. I cannot make any plans, cannot get my work done, cannot even visit friends. I had to stop my volunteer work with children. 🙁 I'm starting to become depressed and hopeless. I've been to a total of about 9 doctors about this problem and they just shrug their shoulders and send me hope with more disappointment. The only help offered was an addictive prescription for benzos but I refuse to be treated for something without knowing the cause. Ideas: an atypical tumor on my pituitary or adrenal glands? Maybe, but I can't get a doctor to order the necessary MRIs. Perhaps not endocrine but a sleep disorder? High A.M. adrenaline is typical for sleep apnea but it should not cause these severe symptoms, and I really do not think I have sleep apnea (I don't have other symptoms). A neurological disorder? Maybe, but I can't get a doctor to order an MRI of my brain to make sure my pituitary gland is okay. If you've gotten through this far and you have any thoughts, please chime in. If your idea leads to a proper diagnosis and I get well (or treated properly) I will be your slave for life 😉 Okay, seriously. I'm not in a good place right now.

Interested in more discussions like this? Go to the Diabetes & Endocrine System Support Group.

@libjen

@bumble81 I agree with you that my symptoms seem to be hormonal as well! But doctors seem to think middle aged women are depressed or anxious when their endocrine systems seem to be off! I’m 45, and 5 years ago I had my uterus and both ovaries removed due to endometriosis, and then about a year after that my thyroid stopped working properly, so I’m Synthroid now, as well as estrogen and progesterone. When the doses of either the thyroid or estrogen change, they affect these hot flash adrenaline rushes that always hit me at 3:30am like clockwork!

My body is telling me it is related to hormones, but I haven’t seen an endocrinologist (and from reading this thread, I’m not sure how much help they may be either). It’s frustrating to have mental health conflated with physical health! I don’t get it? I wonder if it is a lack of knowledge in the field? Or lack of focus on women’s health? It’s super irritating to have to search the web to get any kind of understanding of what is going on, though...

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@libjen, I feel your pain and frustration. I am 37 and had my uterus removed in 2015. I still have my ovaries and have considered the possibility that maybe I am experiencing that stat of early menopause brought on by having my uterus removed. I asked my physician to run the tests to which he replied "take it up with the endocrinologist" I was opened to the idea that this was all in my head like the doctor said. Got therapy and became well versed in cognitive behavioral therapy, breathing exercises and what not.

I have become a shut in because of this. Sure, I might be dealing with some depression but I am more frustrated than anything.
I understand there is a gender bias in medicine. It is well documented. Even my cardiologist said that my symptoms would have gotten a man hospitalized.

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@bumble81

@libjen, I feel your pain and frustration. I am 37 and had my uterus removed in 2015. I still have my ovaries and have considered the possibility that maybe I am experiencing that stat of early menopause brought on by having my uterus removed. I asked my physician to run the tests to which he replied "take it up with the endocrinologist" I was opened to the idea that this was all in my head like the doctor said. Got therapy and became well versed in cognitive behavioral therapy, breathing exercises and what not.

I have become a shut in because of this. Sure, I might be dealing with some depression but I am more frustrated than anything.
I understand there is a gender bias in medicine. It is well documented. Even my cardiologist said that my symptoms would have gotten a man hospitalized.

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@bumble81 I’m sorry to hear that you have suffered as well. I’m thankful that the Mayo Clinic has this forum for people to discuss their concerns! I’m hoping that some brilliant docs and scientists are working on ways to help women like us, who clearly don’t simply have mental health issues, but actual hormonal/biological reasons for their problems!

One day they are going to figure it out and say “oh ya, sorry for the decades we called you crazy, we know that we were wrong! Try ______ and your quality of life should return soon!”

Until then, we may need to rely on philosophy or religion to find ways to deal with deep personal suffering!

Hang in there! It is nice to know we’re not alone 🙂

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@bumble81

@libjen, I feel your pain and frustration. I am 37 and had my uterus removed in 2015. I still have my ovaries and have considered the possibility that maybe I am experiencing that stat of early menopause brought on by having my uterus removed. I asked my physician to run the tests to which he replied "take it up with the endocrinologist" I was opened to the idea that this was all in my head like the doctor said. Got therapy and became well versed in cognitive behavioral therapy, breathing exercises and what not.

I have become a shut in because of this. Sure, I might be dealing with some depression but I am more frustrated than anything.
I understand there is a gender bias in medicine. It is well documented. Even my cardiologist said that my symptoms would have gotten a man hospitalized.

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Hi I saw your post about going through menopause. I was 29 when I had a radical hysterectomy. My 4th child was only 6 months old. I woke from the surgery with all kinds of things happening to me. I had sweats so bad and my head was just a little messed up. Things I wanted to say just wouldn't come out. The surgeon said I was going to go through menopause and that it possibly was menopause. That stayed with me for about 10 years. It was horrible going through that. I hope you are over it soon

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I have found the solution. I have all the symptoms you have described: surges of cortisol at various times of day, nightmares waking up with surges. Feeling so miserable unable to function. I desperately searched the internet and I found an anxiety centre in London, Ontario that specializes in treating these horrible cortisol surges. It is anxietycentre.com. They call what we have hyperstimulation. There is a wonderful reassuring graph showing the levels of cortisol with varying degrees of this illness. I didn't hesitate to join because the information is priceless and they have therapists who have all recovered from this themselves. I can't begin to describe the relief. You can join a weekly Skype lecture by the director. Aside from everything they recommend I had a severe Vitamin C deficiency. My teeth were separating, injuries wouldn't heal etc. When you are under stress you go through Vitamin C like crazy and it only lasts in your bloodstream a few hours. I studied up on it and am taking 3000 mg 3x a day. That made a huge difference. And the biggest most fantastic discovery is CBD oil made from Hemp. There are many companies who sell it on the internet. Within 2 day of taking 500 mg twice a day -- no surges!!! No irritability -- I feel better than I have in as long as I can remember. Google "Best CBD oil" and only purchase it from those manufacturers who have had independent lab tests for purity. My father is dying and we are putting our dog to sleep today and I am without symptoms. Oh gosh I hope this helps you. The suffering is unbelievable. Pass the word the diagnosis is hyperstimulation and the experts are at anxietycentre.com. No doctor in the USA that I have found understands this. It is an anxiety disorder.

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Hi havr you ever found out the cause ? Did they resolve? I have similar issues.mine started about 8 months ago ..when I was put on sotal for my heart rythem problems.since then they have gradualy gotten worse...as of justmow iv had over a dozen attacks for 3 hours.feels like a buzzing then racing heart.my bp goes way up to dagrous levels.iv bern put on medcation to stop my heart rate from going up.I. need some serous help to.

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@cleacock

I have found the solution. I have all the symptoms you have described: surges of cortisol at various times of day, nightmares waking up with surges. Feeling so miserable unable to function. I desperately searched the internet and I found an anxiety centre in London, Ontario that specializes in treating these horrible cortisol surges. It is anxietycentre.com. They call what we have hyperstimulation. There is a wonderful reassuring graph showing the levels of cortisol with varying degrees of this illness. I didn't hesitate to join because the information is priceless and they have therapists who have all recovered from this themselves. I can't begin to describe the relief. You can join a weekly Skype lecture by the director. Aside from everything they recommend I had a severe Vitamin C deficiency. My teeth were separating, injuries wouldn't heal etc. When you are under stress you go through Vitamin C like crazy and it only lasts in your bloodstream a few hours. I studied up on it and am taking 3000 mg 3x a day. That made a huge difference. And the biggest most fantastic discovery is CBD oil made from Hemp. There are many companies who sell it on the internet. Within 2 day of taking 500 mg twice a day -- no surges!!! No irritability -- I feel better than I have in as long as I can remember. Google "Best CBD oil" and only purchase it from those manufacturers who have had independent lab tests for purity. My father is dying and we are putting our dog to sleep today and I am without symptoms. Oh gosh I hope this helps you. The suffering is unbelievable. Pass the word the diagnosis is hyperstimulation and the experts are at anxietycentre.com. No doctor in the USA that I have found understands this. It is an anxiety disorder.

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That sound wonderful I too have same symptoms...right now jave had over a dozen attacks ...wake up to buzzing racing heart.I also have a heart issue called afib....tbis is making it way worse.separately need help

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@cleacock

I have found the solution. I have all the symptoms you have described: surges of cortisol at various times of day, nightmares waking up with surges. Feeling so miserable unable to function. I desperately searched the internet and I found an anxiety centre in London, Ontario that specializes in treating these horrible cortisol surges. It is anxietycentre.com. They call what we have hyperstimulation. There is a wonderful reassuring graph showing the levels of cortisol with varying degrees of this illness. I didn't hesitate to join because the information is priceless and they have therapists who have all recovered from this themselves. I can't begin to describe the relief. You can join a weekly Skype lecture by the director. Aside from everything they recommend I had a severe Vitamin C deficiency. My teeth were separating, injuries wouldn't heal etc. When you are under stress you go through Vitamin C like crazy and it only lasts in your bloodstream a few hours. I studied up on it and am taking 3000 mg 3x a day. That made a huge difference. And the biggest most fantastic discovery is CBD oil made from Hemp. There are many companies who sell it on the internet. Within 2 day of taking 500 mg twice a day -- no surges!!! No irritability -- I feel better than I have in as long as I can remember. Google "Best CBD oil" and only purchase it from those manufacturers who have had independent lab tests for purity. My father is dying and we are putting our dog to sleep today and I am without symptoms. Oh gosh I hope this helps you. The suffering is unbelievable. Pass the word the diagnosis is hyperstimulation and the experts are at anxietycentre.com. No doctor in the USA that I have found understands this. It is an anxiety disorder.

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What cbd oil do u use...it would be great to know. ..cause I really think that would help me to

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@bengalspice

What cbd oil do u use...it would be great to know. ..cause I really think that would help me to

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The brand I found to be the purest and what works for me is Medterra. It costs about $80 for a month supply of 1000mg/day. Scientific studies have used 700 mg with great success. Again this CBD oil is made from Hemp. Very best of luck to you!!

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@bengalspice

Hi havr you ever found out the cause ? Did they resolve? I have similar issues.mine started about 8 months ago ..when I was put on sotal for my heart rythem problems.since then they have gradualy gotten worse...as of justmow iv had over a dozen attacks for 3 hours.feels like a buzzing then racing heart.my bp goes way up to dagrous levels.iv bern put on medcation to stop my heart rate from going up.I. need some serous help to.

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Hi Ben, I attached the list on the front page of the members Website. It covers causes, symptoms, solutions, psychological elements. It is complete for anyone's recover. BTW I have no connection to them other than a recent membership. It costs $40. I would have spent $400!!

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@betsy101

@jk Thank you for your response. Not having a diagnosis is one of the hardest parts of a problem, physical or mental, and I'm glad you were proactive in getting help. Sounds like it saved your life. I live in a large urban area with plenty of medical help, although I belong to an HMO, so access to doctors can be limited. They are very good about testing for various things, and while this is good, it is often the end of the conversation if nothing shows up.
Overactive brain is definitely frustrating--I have tried meditation, listening to audible books, and some Yoga before bed. My sister swears by a little warm milk with cinnamon if she gets up in the night. 🙂 Hope you find something that works.

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Betsy, the Canadian team at the anxietycentre.com call it hyperstimulation and they have all the information you need to recover. The membership fee is well worth it. It's $40.

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