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3am wake up/adrenaline rush/pain/sweating

Discussion in 'Hormones' started by Navid, Jun 9, 2013.

  1. Navid

    Navid Senior Member

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    hi:

    my worst symptoms occur at 3-4am, without fail. i wake up abruptly and feel terrible. Even though when i fell asleep i felt OK. I suffer from POTs/NMH, fatigue, weakness and constipation. My illness started with an abscessed tooth-jawbone infection. I have been sick now for 8+ years with what i would consider severe ME/CFS since I have very little quality of life due to the pots/nmh.

    any suggestions on how to treat the adrenaline filled wake ups that leave me feeling so ill....feels like it is hormonal yet all my tests are normal (of course).

    i have just started a very low dose of injectable gc-maf (5 weeks) nothing good or bad to report yet on that. i also still experience very bad jaw pain where the infected tooth (#30) used to be. Dental professionals say there is no longer an infection; that the nerve is damaged?

    thanks
     
    LaurieL likes this.
  2. taniaaust1

    taniaaust1

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    Have you had your adrenaline and norephinepine tested? (I suggest to get it tested more then once as it can be varying, Ive had some very high readings while another test showed it just within normal range) Mine was abnormally high and affecting my sleep like that. Im now on a drug to lower it (clonidine) which does help and I dont wake up with adrenaline rushes any more. You say you have POTS.. if you could have hyper kind of POTS type too, where the adrenaline can be an issue.
     
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  3. Marlène

    Marlène Senior Member

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    Hi Navid

    Pots can have different causes and as you mention, a abscessed tooth jaw-bone infection and its systemic impact on the body could have been the start.

    Your topic brings me two things to mind:
    1) It reminds me of the story of a doctor who had a car accident, hit her head and had severe dysautonomia for many years. Tests revealed she had a nerve damaged.

    2) An abscessed tooth that impacts your total health reminds me of the mechanism of CRPS
    http://en.wikipedia.org/wiki/Complex_regional_pain_syndrome

    In that case I strongly advise you to contact a neural doctor who can both resolve the disturbances in the nervous system (POTS) and possible lift the systemic impact.
    http://planetthrive.com/2009/08/neural-therapy/

    Neural therapy saved my life, I hope it can improve ours.

    All the best
     
  4. clive powney

    clive powney Senior Member

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    Hi,
    I used to get these between 3 + 6am for quite a few years. It wasnt every night but maybe twice a month or slightly more. It was by far my most scary symptom. I would wake up feeling terrible, then feel that I was struggling for breath. I would then start to shake uncontrollably and eventually I would feel extremely tired and fall back asleep. When I woke I would feel like a bus had hit me. I havent found anyone who could tell me why, but this subsided gradually and I have only had this once or twice in the last couple of years.
    Regarding your tooth, I am 100% positive that there is a recovery story either on here or another forum whereby a man had a bad abcess ona tooth and ended up with a chronic infection that caused CFS/ME. He sorted it by going to other dentists and ended up with an operation to remove part of an infected jawbone.
     
    LaurieL likes this.
  5. soxfan

    soxfan Senior Member

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    I have those nights where I wake up with the adrenaline but mine usually happen around midnight and then I am awake all night. I recently had my cortisol tested through saliva 3x during the day and then 10pm. My cortisol at night it way higher than it should be and my doctor told me that is what is causing these wacky adrenaline surges.
    She just prescribed Seriphos which I haven't taken yet. I am to start at 1/3 capsule 30 min before bed and see how I feel the next morning.

    I am totally sensitive to all meds...supplements so I have to go slow.

    I know exactly what you are experiencing. I had 3 last month where I usually only have them once a month. The next morning after these I feel extremely exhausted and like I haven't slept in months.
    In fact a few weeks back the slamming of my bedroom door (from the breeze) woke me suddenly and cause the adrenaline to start pumping...it never stopped the entire night.
     
    LaurieL likes this.
  6. Navid

    Navid Senior Member

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    thanks everyone for your input and ideas. i have had my jaw debrided several times....depending on who i see some say there is infection there; others sayno it is nerve damage?!?!?!?


    i took iv abx for 2 yrs to treat possible jaw infection and lyme/coinfections......did not get any better. now i am intolerant to abx.

    the type of pots/nmh i may have????? how wld i find this out. i saw a supposed pots expert at stanford and really it was no help....like everyone else i have seen abt this issue they recommended florinef, salt, compression stockings. i am also woking my way thru various beta blockers but have not hit the pot of gold yet.

    i have had neural therapy from dr. klinghardt...no relief.


    so far i have tried pretty much everything out there and have yet found relief or improvement. i will continue to search but my willingness to experiment lessens each year i get worse after trying some other unproven treatment.

    it's such a frustrating situation. i now know the many things wrong with me.....but cant seem to put together the plan for recovery yet....hopefully soon they will know how to drill down better what is wrong with each of us and how to correctly treat it..

    thanks : )
     
  7. ahimsa

    ahimsa Senior Member

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    I've heard from a lot of folks in this situation -- they have a diagnosis but not much medical expertise in how to treat it. For example, my own cardiologist has mentioned several times that he is happy to prescribe various meds for me but he's not an expert in treating different types of Orthostatic Intolerance.

    But I'm surprised that the supposed POTS expert at Stanford was not more help to you. I didn't expect that.

    At any rate, sometimes patients get more help comparing their symptoms with other patients in online forums than from the doctors. There's one section on the Phoenix Rising forums to discuss POTS/NMH and other types of OI at

    http://forums.phoenixrising.me/index.php?forums/problems-standing-orthostatic-intolerance-pots.7/

    And there's a separate forum on the DINET web site at

    http://forums.dinet.org/

    So, those are two places where you could read what others have posted, or ask some new questions and read responses, to see if you can find any new treatment suggestions. But it's still going to be a lot of trial and error.

    It really is frustrating that this is so difficult to treat. But even patients with very similar external symptoms respond quite differently to treatments, e.g., one patient has great luck with a drug while another patient gets horrible side effects from that same drug.

    I have an NMH diagnosis (and possibly have now developed POTS, in addition to NMH, after all these years). I'm currently taking midodrine, fludrocortisone (Florinef), Rx potassium and supplementing with salt tablets and 3 liters of water daily. It's no cure, and I'm not well enough to work. But it is an improvement. When I forget to take any of these things (esp. the midodrine) then I get worse. I'm also taking a few other supplements (magnesium, B vitamin complex, etc.) but I confess that I am less sure whether those are helping me all that much.

    Best of luck to you.
     
    LaurieL likes this.
  8. LaurieL

    LaurieL Senior Member

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    I have never heard this symptom discussed here, and am quite interested. I had these prior to becoming ill, but I do not have POTS. In all honesty, I never considered it. These went on for a couple of years, and then stopped. ??? How many here have gone through this?
     
  9. ahimsa

    ahimsa Senior Member

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    There is so much posted on these forums that it's hard to keep up! I'll start by saying I'm sorry that you went through this combo of symptoms. But this happened before you got ill? I didn't have any symptoms of ME/CFS or NMH/POTS (types of Orthostatic Intolerance) until after I got ill. (Maybe I'm confused by what you mean by ill?)

    The specific symptom combination in the title ("3am wake up/adrenaline rush/pain/sweating") may not have been posted or discussed here before. But I do know that several of the individual symptoms have been discussed. So, I've gone through some parts of what was posted.

    Night sweats is one topic that has been discussed before (a search should find some of the posts). I got night sweats a lot at the beginning of my illness--first 4-5 years, I think. I don't get them as often now, perhaps a few times a year. They seem to be related to autonomic dysfunction and/or Orthostatic Intolerance.

    I also get the frequent awakening. Sometimes, it's just "Huh, I'm awake, I wonder why?" Sometimes it has felt more like a rapid heartbeat awakens me. So, there's a range for me (but no pain for me). I wake up every night. On good nights it's only 4-5 times. On bad nights it can be 12-14 times, maybe more. What it means is that my sleep comes in 20-30 minute stretches.

    I always go back to sleep. I'm not nervous, anxious, etc. I'm so used to waking up by now that most of the time I'm not even annoyed. I just roll over and go back to sleep. I don't even look at the clock. I think maybe my daily meditation is helping me with acceptance instead of anger over it (e.g., getting angry is a waste of time and energy whereas going back to sleep, since I am lucky and able to do so, is much more helpful for me).

    The more I do during the day -- especially any activity that triggers my problems with NMH -- the worse I sleep at night. Activities that trigger NMH for me include standing, sitting upright, heat, forgetting to take my meds, etc. The more I rest, the better I sleep at night. But the more I rest, the more depressed and frustrated I feel. So, I try to find a balance between 100% rest (which would drive me crazy) and pushing too hard (sleep starts getting worse and worse).

    Sleep problems (which includes frequent awakening) are often listed as a symptom of Orthostatic Intolerance (aka, Chronic Orthostatic Intolerance). Here's a symptom list from http://emedicine.medscape.com/article/902155-overview#aw2aab6b3 :
    I hope this helps as a start.

    The summary is that yes, I've gone through some of these symptoms. But not all of them all at the same time. And there may be completely different causes for me than for other patients.

    For me I'm sure that a large part of these sleep problems are due to my autonomic problems. But the details are hard to pin down. At least I have found that, for me, more rest = better sleep. It's just hard because I can already so little and I don't want to do even less.

    One last thing that helps me is skipping dinner at night. And I often substitute a liter of some electrolyte solution like pedialyte (unflavored, generic) for my third liter of water (drink about 3 liters daily). But not eating seems to be opposite of so many ME/CFS patients who have posted that they need to eat lots of snacks, including one before bed, due to blood sugar problems. So, I may be the only one who gets better sleep by not eating dinner.
     
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  10. xchocoholic

    xchocoholic Senior Member

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    Here's another possibility. I kept waking up around 3 and the pain was so mild I didn't recognize it. tc ... x

    PS. Nowadays taking 5htp, melatonin and Klonopin help me sleep through the nite. I had to play with the dose to get it right.

    http://medicalcenter.osu.edu/patien...digestive_disorders/h_pylori/Pages/index.aspx

     
    soxfan likes this.
  11. LaurieL

    LaurieL Senior Member

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    Thank you Ahimsa!

    No, neither of us are confused!! :p Yes, this happened to me prior to getting ill. In fact it was a symptom all of itself in the beginning. Hmmmm.....you all have got me thinking again.
     
  12. xchocoholic

    xchocoholic Senior Member

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    Great article ahimsa. Not that I read it all. They used too many technical terms to hold my attention.

    This list could apply to many illnesses. Menopause comes to mind first :eek: but I get most of these symptoms from low blood sugar.

    I'm surprised that this article didn't state that the TTT or PMTTT is the standard test used to dx OI.

     
  13. ahimsa

    ahimsa Senior Member

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    I'm glad you liked the article and could read some of it. As you said, it's pretty long and a bit technical in parts.
    They mention testing on one of the other pages (see http://emedicine.medscape.com/article/902155-overview#aw2aab6b5 ):
    As shown above, both standing and the TTT (tilt table test, aka HUT) are included in the list of tests. But this article doesn't mention any blood tests that some patients have reported where doctors measure levels of .... (I suddenly forgot....adrenaline?)

    By the way, for those who don't know what PMTTT means (it took me a while to remember!) I think it's an informal acronym that stands for "Poor Man's Tilt Table Test."
     
  14. ahimsa

    ahimsa Senior Member

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    Oops, I forgot to respond to this part.
    Well, one key difference is that Orthostatic Intolerance symptoms are made worse by upright posture, e.g., standing up, or even sitting up straight for a long time with the feet on the floor. Symptoms are not as bad when reclining with feet up, or lying down. Also, symptoms may get worse in the heat or with other triggers.

    Posture must have been mentioned earlier in the article. I just cut/pasted the list of symptoms to show that sleep problems are part of the list. Some shorter lists of OI symptoms forget to mention sleep. They only mention the dizziness, nausea, heat intolerance, etc.

    I think it's odd, in a way, that lying down helps with OI symptoms, most of the time, and yet OI can interfere with sleep in some patients. I'm sure there are subtleties that are just beyond me. These sleep problems have to do with autonomic dysfunction that goes beyond the obvious problems with gravity and blood pooling that are a response to upright posture. If I recall correctly it has something to do with the sympathetic (or parasympathetic?) nervous system but I forget all the details.
     
  15. soxfan

    soxfan Senior Member

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    My sleep problems are totally due to autonomic dysfunction...in fact I think most of my symptoms are the result of that. I don't think I am ever able to get a good nights rest due to my nervous system being in overdrive most of the time. I never feel calm inside ever...it isn't anxiety as I have tried those drugs to see if they would help and they did nothing at all.
    From the time I get up till the time I go to bed if I am either sitting still or laying down my body feels like it is in overdrive. I can never rest or relax during the day. Many times I will stand and eat breakfast and lunch because the minute I sit down I start to feel terrible....weird I know.

    The doctor has me listening to meditation on my ipod and it helped for a while then stopped. She wants me to take Seriphos at night to help with the high cortisol pm levels...haven't started it yet because I am trying to get myself off klonopin first.
     
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  16. John H Wolfe

    John H Wolfe Senior Member

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    Starting to wake inexplicably in the middle of the night in spite of being tired and it being totally dark and quiet is something that never really happened to me with any great regularity until this spring - it's what prompted me to resume my research. In my case, I associate this with:

    Nocturnal diuresis: Associated with poor water retention, in turn associated with OI [POTS in my case]

    I am currently drinking a 2-3 ltrs of water a day and receiving manual lymphatic drainage (which makes you thirstly/you're supposed to drink a lot to aid detoxification) so this needs to be approached carefully
    I have my bed elevated by 8" and sleep with two pillows (whilst keeping spine fairly straight) to counter nocturnal diuresis. I have had to tone down my water intake around dinner time and not drink thereafter in order to stop waking at some time usually between 4 and 6am with anything from mild bladder pressure to blatantly needing to pee

    I have started supplementing with salt in the daytime too (to encourage water retention) and intend to start doing so routinely the late evening (with small amounts of protein). Needless to say, one should not supplement with salt if you have high blood pressure (unlikely if you have OI but best to be sure)

    Nocturnal hypoglycaemia: Associated with blood sugar level dysregulation and avoidance of carbohydrate anywhere near bedtime (so I'm able to settle down to sleep relatively easily) plus possibly also insufficient amino acids that aid sleep hormone production and counter the effect of insulin re: hypoglycaemic adrenalin release triggering

    I am on a low, fairly exclusively complex, carb diet. I try to balance carb intake out over 3 main meals and have plenty of protein with them, plus the odd 'snack' (usually exclusively protein or protein + vegetables) in between meals

    I also sleep lightly/wake prematurely early in the morning if:

    Light enters the room

    There is more than the slightest noise

    Hay fever is bothering me

    Blacking out my windows as much as possible, encouraging co-habs to be as quiet as poss if they're up early, and taking a shot of nasal spray and a quarter anti-histamine have been effective ways to mitigate against this

    I experienced really disturbed sleep throughout the night following attempting my complete nerve glide exercise routine the other day. You may find that if you move in certain ways during the day that this excites the sympathetic nervous system (it's fairly theoretical but Rowe observed enhanced symptoms in patients 12-24 hours following neural tension testing)

    I am now working (mostly indirectly) on nerve and neuromuscular de-tensioning to help improve tolerance of nerve glide

    There are quite a few extra pointers re: sleep in my protocol, might also be worth taking a look at them

    Hope this situation improves for you :)
     
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  17. Old Salt

    Old Salt Rowing the boat

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    This is delayed food reaction! Can be very dangerous, stroke, etc. For me it is caused by wheat or citric acid. You need the Alcat reaction test. Muscle testing wasn't good enough. www.alcat.com
     
  18. WoolPippi

    WoolPippi Senior Member

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    just telling my story: wake up every night at 3 AM and brain is bright bright awake. Get tired after two hours, fall asleep, wake up exhausted. I had this prior to falling ill and have had it always.

    First I thought it was a cortisol peak but now I think it is excess Noradrenaline on the brain, preventing me from going into REMsleep (which occurs in humans 4-5 hours after initially falling asleep)
    I have a MAO mutation which slows down the breakdown of excitatory neurotransmitters such as noradrenaline. Somehow this effect is big in the middle of the night, right after nonREMsleep.

    I have started supplementing with 100mg oral Progesterone pill which converts to 10mg Progesterone in the body which is a neurotransmitter also. Especially when it gets converted to Allopregnanolone, a calming neurotransmitter as potent as benzo's such as Valium.
    I sleep through the night now. Wake up refreshed. Have not grown breasts or babies under the excess progesterone.

    short story: it's a noradrenaline rush that's keeping me awake. If you have MAO A homozygous mutation or recognize the feeling of your brain bering very VERY alert during this type of insomnia, it may be the same for you. Not getting into REMsleep robs the body of GABA and Human Growth Hormone. Making you more ill.

    (don't start HRT without broad selfstudy on the subject. Then start low and go slow.)

    to OP: it doesn't sound like this is you. You seem to have some bodily ailment that sends the body into a panic after the first sleep cycles (nonREMsleep). If the body has no resources to furnish this cortisol peak it will only get into a panic more. Either way, your chance of REMsleep and healing HGH is out of the window.

    It takes a few minutes to break down (nor)adrenaline but the half time of cortisol is 2 hours. So if that's the amount of time your body needs to calm down... then that hormone is my first guess as responsible for the insomnia.
    Whát causes the surge in stress hormones is another guess. Some bodily ailment... but what...

    Also: it is the 3AM that is your wake-up time or is it 4-5 hours after falling asleep? The last one is connected to sleep cycles. The first one to the liver (or lungs) in Traditional Chinese Medicine (I think. But we are not in China so who knows wether their organ clock applies to our continents too?)
     
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  19. dmholmes

    dmholmes Senior Member

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    I used to have that happen several nights a week. Stopped when I eliminated gluten from my diet.
     
  20. WoolPippi

    WoolPippi Senior Member

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    oh yes, all things upsetting the intestines should be eliminated! You are so right.
    gluten. For me also fruit, vegs. Eating after 6 at night. Drinking after 7 at night. Large portions.
     

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