Med detective needed, award given - adrenaline spikes

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.

@bostonwoman

I know I am late for a reply to this but I hope you have found some sort of resolution by now considering this is a year later. When I read what you wrote I immediately had to reply. This will probably be my first and last response on here but I felt it was so important to give you this information that I actually signed up with an account just to write this! Basically, I am a 29 year old female and am otherwise healthy. When I was 25 I had the same adrenaline rushes while asleep and wondered what was happening and could not figure it out for the life of me; it was causing me anxiety not knowing. Many people thought it was panic attacks but I knew it wasn’t. I suffer from anxiety but the two are not the same. I was also completely calm when this occurred. Anyway, months after it started I was hospitalized and then diagnosed with SVT and monitored for several nights before being released. I was then referred to a cardiologist at Mass General Hospital, and I, to this day am prescribed (extended release) metoprolol 50mg daily, and those awful symptoms have completely stopped altogether. I wonder if this is what’s happening to you and no physician is thinking of this because they are not giving you a EKG or one of those monitors they have you wear on your body for 72 hours. My heart was doing all sorts of crazy things while I was asleep and I was unaware of why my body was feeling those rushes of adrenaline and why I felt so wired but then so tired, and like you mentioned, just not myself. Nobody wants to feel like that. Well, my life has been different since being diagnosed with SVT but I’m glad I was or else I would be living in fear like before, still wondering what is wrong with me like I was for months. It is better to know what is wrong in my opinion than to wonder, even if the diagnosis is not all that great. If I could help one person I would feel so happy!! With all of this being said, I truly hope you find relief either way but it is worth seeing a cardiologist to rule out the SVT issues! Wishing you all the best and hoping by now that you have found some resolution to this! I know what a nightmare it can be. Please just know that you are not alone.

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I was diagnosed with svt recently as I am having episodes of crazy things going on with my heart, I have the rushes as well, but I also have where my heart does flip flops and skips beats, and other times my HR is over 250 bpm. I did wear a monitor for 24 hours and I do see the cardiologist on the 6th. The monitor didn’t pick up all the rushes though, only some. My report says 6 premature super ventricular tachycardia episodes were seen as well and 8 premature sinus episodes. I do have a heart monitor in my phone and some nights it picks it up, other times it doesn’t. Thank you for your reply, I am going to bring this medication up on Wednesday.

Liked by bostonwoman

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I have also had adrenaline spikes which wake me up every morning for at least the last 18 months. I have seen a primary care doctor, a psychiatrist, a sleep specialist, a neurologist, and a spine doctor ( I was having some back problems also). I have had many blood tests, an MRI, and a sleep test. The only doctor who suggested a possible explanation which feels right to me was, oddly enough, the spine doctor. She said that my blood pressure might be dropping while asleep (I guess this is normal when we sleep) and my body was over-compensating with the rush of adrenaline. I am on a small dose of Zoloft, and the neurologist prescribed Clonazepam, which hasn't helped much and I don't like being on a benzo, so I hope to discontinue it. I have been waking up at 3 or 4 am lately, so am feeling very sleep-deprived and would like to figure out how to calm down the adrenaline. Meditation and exercise relax me, but going to sleep is not the problem, it's this being awakened every day with the "fight or flight" experience. It does indeed make one feel pretty desperate!

Liked by neil6

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Hi @betsy101 and welcome to Connect! Those symptoms must be awful and it must be frustrating to be unable to find a successful treatment.

I wanted o introduce you to fellow Connect memebrs @sierrawoods @libjen @contentandwell @gailb @jigglejaws94 @lmherman and @mittzyvon as they have all experienced something similar or have had a mystery diagnosis and may be able to offer you support.

Back to you, @betsy101 have you had any other symptoms outside of these adrenaline spikes?

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@ethanmcconkey

Hi @betsy101 and welcome to Connect! Those symptoms must be awful and it must be frustrating to be unable to find a successful treatment.

I wanted o introduce you to fellow Connect memebrs @sierrawoods @libjen @contentandwell @gailb @jigglejaws94 @lmherman and @mittzyvon as they have all experienced something similar or have had a mystery diagnosis and may be able to offer you support.

Back to you, @betsy101 have you had any other symptoms outside of these adrenaline spikes?

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@ethanmcconkey @betsy101 I know the frustration of not having a diagnosis having gone almost a year and a half without one for cirrhosis. I was having confusion episodes (along with other symptoms) so was sent to a neurologist. He was the first person who suggested liver problems!
I don’t know where you are, but what I learned from this was to not wait locally if a diagnosis is not forthcoming within a couple of months. I am about 55 miles outside of Boston, which is where I had a liver transplant, and now go there for everything other than my PCP.
I don’t think my sleep problems are as severe as yours, but I also very often wake in the middle of the night (bathroom calls) and don’t get back to sleep for hours, so I can sympathize with your plight. I don’t have “fight or flight” feeling, just an overactive brain spinning around. I will be very interested in hearing if a solution is found for you, please let us know how it’s going.
JK

Liked by cleacock

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@ethanmcconkey

Hi @betsy101 and welcome to Connect! Those symptoms must be awful and it must be frustrating to be unable to find a successful treatment.

I wanted o introduce you to fellow Connect memebrs @sierrawoods @libjen @contentandwell @gailb @jigglejaws94 @lmherman and @mittzyvon as they have all experienced something similar or have had a mystery diagnosis and may be able to offer you support.

Back to you, @betsy101 have you had any other symptoms outside of these adrenaline spikes?

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@ethanmcconkey Thanks for getting back to me. I have read the posts from the people you mentioned, and felt much compassion for the severity of their symptoms. I have described my feelings on being awakened as "vibrations", as opposed to tingling (which I feel in my legs from pressure on nerves in back) or tremors (which the neurologist prescribed for) and I think this term has perhaps stumped my doctors and made them think it is "all in my head." I often feel tired and drained if the vibrating has been especially intense or lasts longer than usual. Knowing that it might be an over reaction to low blood pressure has given me a different view of this. I have been sleeping better the last few nights, so am feeling better. I've tried raising my upper body at night, which seems to help, but is awkward since I sleep on my side.

Liked by cleacock

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@contentandwell

@ethanmcconkey @betsy101 I know the frustration of not having a diagnosis having gone almost a year and a half without one for cirrhosis. I was having confusion episodes (along with other symptoms) so was sent to a neurologist. He was the first person who suggested liver problems!
I don’t know where you are, but what I learned from this was to not wait locally if a diagnosis is not forthcoming within a couple of months. I am about 55 miles outside of Boston, which is where I had a liver transplant, and now go there for everything other than my PCP.
I don’t think my sleep problems are as severe as yours, but I also very often wake in the middle of the night (bathroom calls) and don’t get back to sleep for hours, so I can sympathize with your plight. I don’t have “fight or flight” feeling, just an overactive brain spinning around. I will be very interested in hearing if a solution is found for you, please let us know how it’s going.
JK

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@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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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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@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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Neil, thanks for your comments. You will think this is crazy, but after trying meds and tests and doctors, I read a book called Energy Medicine by Donna Eden and David Feinstein. It's about working with the energy in your body, mainly through tapping acupressure points. When I do these things at night when I'm awakened and feel terrible, the energy calms and I can sleep. It's the only thing that works for me and has even stopped panic attacks that I had for decades. Not sure how this would work with your cfs, but the nice thing is it's natural and won't hurt to try. Best of luck, Betsy

Liked by cleacock, tinabelle

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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.

Liked by cleacock

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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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@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

@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

Liked by cleacock

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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.

Liked by cleacock

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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.

Liked by cleacock

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