Adrenal Surges throughout the night

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I have written this post about 10 times now and I keep losing it so if it appears 10 times, I apologise.

Every single night, about 4 to 5 times a night, I am woken by what feels like a rush of adrenaline pulsing through me. This is then followed by a feeling of unease. I am wide awake and it can take me ages to get back to sleep. Every day I feel exhausted. My GP has prescribed Sertraline but I have not started them yet as I am concerned re the side effects. The only thing that seems to help is if I take an anti histamine sleep aid. I can then get back to sleep quicker (but not always). Does anyone know what might be the cause please and how I might go about sorting this long standing problem out? I am a 56 year old female who had a total hysterectomy several years ago. I am on estrogen and have played around with the dose with no effect. About 5 years ago I experienced a very high level of stress which lasted a year or two. If anyone can shed any light on my problem: cause and how to solve it I would be so so grateful. Thank you.

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9 Replies

  • Posted

    Hi Deb, I had similar symptoms to you plus very high blood

    pressure then very low with sudden headache. After 2 years I

    was diagnosed with bilateral pheochromacytomas - small growths on

    my adrenals that shoot off adrenaline. If you think this fits you, you

    can have blood tests or a 24 hour urine test to confirm diagnosis.

    I had to have my adrenals removed but it fixed everything and now

    I'm just fine. Hope you find an answer. Cheers Maggie

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    • Posted

      Thanks for your reply Maggie, I did have the 24 hr urine catchment test and it did show that something was a bit high but they said nothing to suggest the pheocromacytomas. The endocrinologist I saw just thought I was mad. I wish he could sample just one night of what I go through every night. It's driving me insane! I've had scans for other reasons both ultra sound of kidneys and CT which I would have hoped would have shown them up if I had them. I am getting to the end of my tether here without a cause being found.

      Thank you for taking the time to reply.

      Deb

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    • Posted

      I so feel for you having gone through a similar experience for 2 years before being diagnosed accidentally (CT scan) during a trip to A&E. I did wonder if you should ask for the more reliable blood test for Pheochromacytomas as I think the urine test only picks something up if the adrenaline is actually being released during it. Although I guess if the ultrasound and scan didn't show anything (could the pheo be really small?) the pheo is unlikely. I imagine it would be so good just to get a diagnosis then you'd know how to deal with it and also feel doctors believe how awful it is for you.

      Cheers Maggie

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    • Posted

      Hi Maggie could you tell me what symptoms you had before they found the Pheo. I was diagnosed last year with an adrenal adenoma 1.2cm This was found when I had a CT scan for something else. I was also told I had a nodule on my lung. I had the 24hr urine test and blood tests but they came back normal. They are keeping an eye on it at the moment and I am having another CT scan this November to see if the adenoma has grown. 

      Did the Pheo show up when you had the first lot of  tests or did you have repeat blood tests before they found it? 

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    • Posted

      Hi Merryl,

      I started with Atrial Fibrillation with really bad symptoms - very high blood pressure then plunging down to really low plus terrible sudden headache, nausea, dry retching, feeling faint - all daily, lasting an hour or so. This continued for 2 years while they tried to treat the Atrial Fibrillation - nothing worked.even surgery. Last Christmas I was really ill and went to A&E because my GP thought I had appendicitis. An Xray and CT scan showed growths on both my adrenals. I then had a few weeks of tests while they discovered what they were. I did have repeat blood tests and repeat urine tests, initially they were elevated but not conclusive until later. By this time the pheos were 8cm and 4cm and very soon after diagnosis I had both adrenals removed.Even though it was very risky surgery and I also lost my spleen I recovered very quickly and have been really good since - just learning to live with pills I have to take.

      Hope this helps, Cheers Maggie

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    • Posted

      Thank you Maggie for your reply. I get similar symptoms as you did but not so often. I had an attack about a month ago and my blood pressure was 200/110 with facial flushing and my pulse can go up to 130. The cardiologist thought I had atrial fibrillation but the one I normally see said I don't have it. I will be seeing the cardiologist 2 weeks time. It must be a nice feeling getting rid of the Pheo and back to normal.  

       

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    • Posted

      Hi Maggie,

      I am on continued HC steroid cover for Adrenal insufficiency for Four years now.

      How are you finding it?

      I am still struggling with the dosage it is a pain at times because I feel well for a week then back to feeling really kinda pooh to put it mildly.

      I followed the Circadian rythymn dose 25 mgs over four doses daily. Also updose for other problems or infection stress surgery etc .

      I would be interested to hear how you are coping .

      Thanks x banjo58

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    • Posted

      Hi Banjo, Good to hear from you, but sorry to hear you're still struggling with your doses. I find it is a bit of hit and miss but overall I'm heaps better than before I had my adrenals out. I gather from my Endocrinologist that there are as many theories about times of doses as there are Endocrinologists!! Mine goes for the simple version, I take 15mg when I wake, then 5mg at 4pm and this seems to suit me. If I'm extra active or stressed about something I take another 5mg at lunchtime. I assume you take your biggest dose in the morning, then less as the day goes on. I think I would find it difficult remembering to take 4 doses, I already have to set an alarm on my phone for 4pm! 

      Let me know how you get on, Cheers Maggie

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    • Posted

      Hi maggie,

      I am now at the monent updosing as have an infection..

      But im actually doing okay thank you , i take 20mgs hc am As im( doubling at mo!) and 10 mgs at 2pm and then another 5 mgs at 5pm  and am doing fine at then moment , on this although not feeling well due to infection..Sleeping lots and lots x

      I have endo appointment next week should be interesting lol ..

      best wishes ..Banjo 

       

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