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.

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@bumble81

I joined this forum because I found your post while looking up possible adrenal problems. Our situation is quite similar. The only way to describe it is an adrenaline attack. And getting to sleep became impossible. My body gets this internal vibration, hot flashes, heart rate elevated, blood pressure suddenly all over the map and sometimes I get chest pains. I was having these episodes many times a day. Recently they have slowed thankfully. I wasn't sure how much more my body could take.

I have ended up in the ER multiple times and the only thing they found repeatedly is that my potassium keeps falling below normal levels. The first time it was so low they put me on IV potassium. And hypoglycemia even though I had eaten and orthostatic hypotension. None of which I have had issues with prior.

My GP says it's anxiety but I am not convinced. I started to think it might be hormonal and begged to see an endocrinologist. He reluctantly approved but he insisted this was all in my head. It's been frustrating. He put me on an antidepressant that I had a bad reaction to. It made my symptoms so much worse:(

Now I need 1mg of Ativan and one muscle relaxer just to get to sleep.

Edit: I did have an MRI done and they noted my pituitary glad was larger than it was on my previous MRI from 2015.

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Hi! 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. They know how to completely cure it.

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@neil6

Hello I just read your post and it relates to me totally I'm getting one surge every other day mostly in the morning or during the night. It sometimes prevents me sleeping for hours, or I wake up try to sleep and just as I begin to nod off it flares. It's like my body won't let me sleep as it thinks there's danger. I've been diagnosed with cfs as I was getting energy crashes but they only last one or two days and doesn't relate to half of the CFS criteria as adrenaline will cause same symptoms. ie pots imsonia etc. Also as I have excersise intolerance I thought it was cfs/ me. Not convinced! I'm taking melotonin and somelex but nothing makes me sleep longer or get me through a spike. I'm anxious because of this condition not the other way around. Do you have any advice or updates hacks as my hormone panel came back as normal. kind regards Neil

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Hi Neil, 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. If you join you get many benefits including a weekly Skype with the Director. They know how to cure this. Wishing you all the best.

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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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I really encourage everyone to look up the symptoms of Vit. C deficiency. I was shocked to find out how badly I had it! It takes high dosage for 3 months to recover. Stress just eats up Vit. C and is related to the surges you feel.

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@bengalspice

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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This is the graph that shows the levels of severity of hyperstimulation and when cortisol is high and low during the day. Please refer to anxietycentre.com for detailed information. I have no affiliation with them.

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@cleacock

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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@cleacock Thanks for this information. I will definitely check it out.

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I am 61 years old. In my 40's I had an endometrial ablation which brought me into early menopause. I was starting to feel anxiety so I thought, well I'll go see my doctor and see what she says. "I want to put you on this wonderful med called Paxil. I want to start you at 10mg daily and then increase it to 20mg daily if we need to." I said, "I have never been on any meds, not even over-the-counter meds or supplements." So, I started 10mg. After a couple of days I felt overwhelmed and decided to lower the dose to 7.5mg and then down to 5mg. This was the start of my 6 year journey through hell.
Within those 6 years on 5mg of Paxil, I struggled with doctors not understanding why 5mg of Paxil could be a problem for me. I just didn't feel right. Anxiety was worsening, rashes would come and go, blood pressure spikes, chronic diarrhea, kidney stones, anger, frustation. Doctors wanted to add other meds to that 5mg dose of Paxil but didn't want me to come off it. Now, after the end of 6 years being on that same dose of 5mg Paxil, I experienced severe serotonin syndrome. I had never been diagnosed by any ER doctor but by a doctor who was referred to me by a friend who knew I was sick and struggling. He is a neuro psychiatrist that specializes in complicated medical cases. After the symptoms of serotonin syndrome healed, I continued to experience adrenaline rushes and to this day, I still suffer from them 24/7.
I do have a medical background. I am a non practicing nurse due to my condition. I eventually contacted a site called Silent Death which was very helpful. A few months ago, I came across Mayo Connect. I read Sierrawoods story and cried. I sent her a very short private message but didn't know if it was received.
I am grateful to have found all of you.
I thought that before I tell my story, I would have my genetic testing done through Oneome. Thank you so much. I already had my cyp2d6 done through the Mayo Clinic 6 years ago. I was also seen at that time by an endocrinologist who told me to "look up at the stars and meditate".
If anyone wants to see my results, I can send those. Guess what? My results were exactly what I was expecting and more. I feel so blessed to have found that mutations are the reasons why I could not process medications very well. One in particular that I found interesting, was COMT . I am a metabolizer of met/met AA. My Dad and Mom each gave me the A gene. This tells me that I cannot metabolize dopamine fast enough. I metabolize 50% slower than normal.The picture is clearer to me now. This says that my med difficulties are: anxiety, adrenaline rushes, no depression (ever), increased hypersensitivity, dopamine is in control of norepinephrine. Wow!.
My next step is to be seen at Mayo Clinic. I will see a autonomic neurologist. I am here for all.
Carm

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@jigglejaws94

I'm assuming that you've been evaluated for pheochromocytoma since you mentioned catecholamines were normal. That came to mind. Hormonal imbalance or adrenal dysfunction --- something is telling your brain to produce more epinephrine. There is a breakdown in the communication. Autonomic dysfunction?

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I had this off and on. It turned out to being caused SSRI's that are used for depression. Another thing may be panic attacks during your sleep.

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@hondaf

I had this off and on. It turned out to being caused SSRI's that are used for depression. Another thing may be panic attacks during your sleep.

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@hondaf ,
Your're absolutely right. SSRI should not
have been giving to me in the first place.
My doctor new me for many years and
new that I never showed any signs of
depression. SSRI'S are extremely potent
and they do their job very well. I can see
now with the understanding of my genes
that I would be heading for a disaster.
I do not have normal anxiety per se or
panic attacks. I have a continual flow
of norepinephrine which does mimic
anxiety (fight or flight). I have given this
release of norepinephrine in my body names like flushing, creepy crawlers,
adrenline rushes. I do have themal disregulation with this release ,bp spikes,
tightness in the shoulders and neck. Those symptoms are due to the constriction of blood vessels. when the hormone is released. It seems as if this
pattern really never changes much. It's
almost as if it fires on circadian rhythm.
I have no control over this problem where
with the norm of anxiety and panic attacks you can apply various methods.
Carm

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@cleacock

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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@cleacock, I joined the anxiety centre for one month, which is even cheaper. I have already read helpful information about how systems in the body work, which makes me feel more hopeful about treating these symptoms. Nice to know someone gets it!

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@betsy101

@cleacock, I joined the anxiety centre for one month, which is even cheaper. I have already read helpful information about how systems in the body work, which makes me feel more hopeful about treating these symptoms. Nice to know someone gets it!

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@betsy and @cleacock
I have read your stories. I am so sorry for
your suffering too. We're all working really hard to find ,
answers to the
symptoms that we feel daily. I can see
that I found the right group of understanding,caring, and hard working
individuals. Thank you @serriawoods!!
We are all on our pathways for truth.
I'm going to join the anxiety centre. I know that there will be new information to learn. There always is . Thanks so
much. I'm not so computer literate. Please help me if I have any question.

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