EarthMother Posted April 27, 2009 Report Share Posted April 27, 2009 I remember this pattern so clearly from previous bad crashes. But can't recall anything (other than time) that seemed to make a dent in the cycle. I crashed about coming up on three weeks ago now ... the high agitation and surges that come out of no where. Dropped four pounds instantly and it is taking everything I can do to keep from losing even more ground. (i.e. get out the whole milk, butter, toast and nuts.)From the moment I wake up, my muscles (coathanger) seize up in pain, the internal tremors are tremendous, and I am in a high state of agitation (while motionless sitting up in bed) for the entire morning. But morning in this case lasts until about 4:00 p.m.! It is the strangest cycle. But by evening, I almost start to feel "normal" again. (Well, normal for POTS.) I can usually cook a little dinner for the family, write on the computer a bit, stretch out my legs, which had been huddle in a crouch all day. I even went for a stroll in my wheelchair up the street after dinner. At night, I sleep well. No pain. No muscle twitches. I may get up 2 or 3 times to use the loo during the night and still, no problem. But then in the morning ... usually after I get up and use the bathroom for the first time since dawn everything starts to plummet fast and the cycle launches for another nine hour stretch. I've checked my morning blood sugar and its pretty stable as it has been now for months. I figure it must be some kind of hormonal imbalance that is tied to a circadian body clock. Or! I suppose it could be histamine related. I don't tend to have "allergies" but I think the last time I had this I read somewhere that the timing and symptoms sounded like a histamine issue. I missed my morning appointment with my PCP last week, because I was too sick to go (what irony) perhaps I'll try and get a late afternoon slot and take a shot at it again so that I can at least get some blood work taken.Anyone else notice that morning crash that seems to last until well after mid day? Or any tips that I may have forgotten in my perimenapausal fog?Thanks crew.~EM Quote Link to comment Share on other sites More sharing options...
morgan617 Posted April 27, 2009 Report Share Posted April 27, 2009 I actually feel and do my best when I get up. I crash around 1 pm till about 7 and then get a second wind. And just when I think I've got it figured out, it changes and does the opposite! I wish I could figure it out too! morgan Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 27, 2009 Report Share Posted April 27, 2009 Yeah my cycle is fairly similar:bad period:Wake up early with knot in stomach, trembling, tachy while lying down,Get up and feel ordinary, Symptoms worsen to about midday to 2pm ishOn a bad day they never improve.Improving:same as above, but anxiety is less in guts and then there is a sudden and significant but never complete improvement at 2pm onwardsGood:bad days become less frequent, better days become more common until suddenly I realise that i am only crashing very occasionally, and my 11am slump is just minor spacy dizziness. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted April 27, 2009 Report Share Posted April 27, 2009 EM, hang in there and ride out the wave, you know it will get better! Positive thoughts coming to you!My crashes are a night of wide awake insomnia, get to sleep sometime in the wee hours and the impossible get up.Incredible tachycardia/chest pain till I get enough fluid in me, then a short period of OK-ness till 11am-5pm when I am an impossible, almost vegetable: truly cannot think and definitely cannot hold a conversation.That wears off slowly and by nightfall comes my second wind and "almost normal"rinse and repeat......... Quote Link to comment Share on other sites More sharing options...
ana_22 Posted April 27, 2009 Report Share Posted April 27, 2009 hold on...something will CHANGE soon....the only thing we can count on...CHANGE I know its awful! at the moment my issues are light sensitivity and migraine while eating and after eating (just when the FLORINEF was helping my never there appitite and concrete feeling stomach). im hoping this will change soon. arghhhhhhh pots *****...... Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted April 27, 2009 Report Share Posted April 27, 2009 Hi Earth Mother,Hang in there... sending hugs! I am also really struggling with an increase in and worsening of symptoms right now and have been waking up really bad in the mornings and not getting better per my usual schedule... I usually start to feel somewhat more stable around 3 pm. I am not sure what started my flare or how to stop it, but I feel for you. All day I am struggling and trying to survive, just praying and telling myself that I might feel better come the late afternoon and evening. This is such a wicked condition. I am sorry for what you are going through. Just know that you are not alone and have a lot of support.~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted April 27, 2009 Report Share Posted April 27, 2009 So sorry. I agree that it is likely temporary. I get crashes too and usually like you, I am terrible in the AM and then progressively better as the day goes on. I agree it is likely hormonal stuff wreaking havoc. The only thing I can say from my experiences is to hang on to the thought that this will get better, try not to spend too much time lying down, try to keep the fluids going.Hope you emerge from the POTS hole soon. Quote Link to comment Share on other sites More sharing options...
EarthMother Posted April 27, 2009 Author Report Share Posted April 27, 2009 Deep bow of thanks for everyone's kind words and suggestions.As I shared in a post with Ramakentesh this morning was the first morning in three weeks that I could feel a subtle shift. I was notably in less pain and the high level of constant agitation diminished. I made my way downstairs on my own by 11 a.m. and even fixed a little something for myself to eat. Amazing, given what I've been through this month. I was able to do a few floor exercises as well and even went for a tiny tiny drive with my husband in the car. All little things, as I know the big culprit is the tendency to overdo once we have a fleeting good moment.It amazes me still how this illness can turn on a dime. Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted April 27, 2009 Report Share Posted April 27, 2009 Earthmother,Glad things are looking up! Yes, they turn on a dime! Hope things continue in a positive direction!Firewatcher,I have to say almost your WHOLE post fits me perfectly!!! Whole nights of insomnia, able to start to fall asleep in wee hours, then DO NOT want to wake up! By 4:30-5:00 start to be 1/2 normal. Then, feel better, more productive etc. over night, and it happens YET AGAIN! Rinse and repeat!!! I have been trying to sleep at around 11:00 pm. Finally fall asleep and am up by 1:30 or so wide awake like clock work. Can't sleep then until wee hours, sometimes more like 9:00 am. Thenn recently I am lucky if I can get some sleep. Either constantly wake up, unable to fall asleep to begin with, or wake up wide awake. The humidity and temp has a lot to do with this as well. My whole life, practically from the time my parents brought me home from the hospital as a baby, I have had these really weird sleep schedules. In elementary school I would stay up til 10-11:00 reading in bed. Middle school things just got worse. By high school I would crash when I got home until dinner. Wake up and eat. Then chill, do homework etc. And I would be up until 1, 2, 3 in the morning and unable to sleep. I DISCOVERED caffeine (coffee) in jr or sr year, and it helped daytime significantly. But, I was still so backwards...If I do the whole don't sleep during the day to regulate my schedule, then I tend to just be up for days. I really seem to be programmed to be awake at certain times, and they are not "normal" times.I just had a "disagreement" with this again with my PCP. I tell her my sleep is awful (too much insomnia). Then she is like do you sleep during the day? I am thinking how too answer, and say, yes that is when I sleep. She is like well that is your problem! I tell her I have always been this way, but she does not understand! Then she says what about caffeine? I drink to much according to her, but that is how I stay semi-alert during the day. I drink powder tea through out the day, its not coffee... And I explain I had these problems prior to my ever drinking caffeine, and have went off it for 3 mnths before and things got worse not better! Because then I am that much more tired during the day. She really didn't understand and thought I was crazy between that and my arm pain. She actually tilted her notes up close to her and started scribbling a lot! (not good )She also tried to convince me the arm pain I was having was tennis elbow and not bone pain!!! I was like I think after my education I know the difference between tennis elbow and bone pain!!! She also didn't believe that it was allergy induced! I think she was close to locking me up! She did not believe me!!! I do have an appmt with a sleep dr in May, I hope the dr. understands these disorders and is helpful, and not another sleep hygiene queen. No naps! No caffeine! No sleep! Urrrgghh!!!Oh, well!!! Quote Link to comment Share on other sites More sharing options...
all4family Posted April 28, 2009 Report Share Posted April 28, 2009 Hi EM,Sorry you've been having such a hard time, but so glad to hear that you had a good day. I have seen you mention meditation, and just wanted to mention a video on you tube I listen to that really helps me relax my muscles. It is in 4 parts, but almost every time I listen to it I fall asleep. Here is the link to part one, if you are interested. http://www.youtube.com/watch?v=i4aDZN8TXSkI just wish I could put them on a disk to listen to so I wouldn't have to go from one to another. I'm not that techy though....have a nice and symptom free day! (we can always hope.)Suzy Quote Link to comment Share on other sites More sharing options...
firewatcher Posted April 28, 2009 Report Share Posted April 28, 2009 Earthmother,Glad things are looking up! Yes, they turn on a dime! Hope things continue in a positive direction!Firewatcher,I have to say almost your WHOLE post fits me perfectly!!! Whole nights of insomnia, able to start to fall asleep in wee hours, then DO NOT want to wake up! By 4:30-5:00 start to be 1/2 normal. Then, feel better, more productive etc. over night, and it happens YET AGAIN! Rinse and repeat!!! I have been trying to sleep at around 11:00 pm. Finally fall asleep and am up by 1:30 or so wide awake like clock work. Can't sleep then until wee hours, sometimes more like 9:00 am. Thenn recently I am lucky if I can get some sleep. Either constantly wake up, unable to fall asleep to begin with, or wake up wide awake. The humidity and temp has a lot to do with this as well. My whole life, practically from the time my parents brought me home from the hospital as a baby, I have had these really weird sleep schedules. In elementary school I would stay up til 10-11:00 reading in bed. Middle school things just got worse. By high school I would crash when I got home until dinner. Wake up and eat. Then chill, do homework etc. And I would be up until 1, 2, 3 in the morning and unable to sleep. I DISCOVERED caffeine (coffee) in jr or sr year, and it helped daytime significantly. But, I was still so backwards...If I do the whole don't sleep during the day to regulate my schedule, then I tend to just be up for days. I really seem to be programmed to be awake at certain times, and they are not "normal" times.I just had a "disagreement" with this again with my PCP. I tell her my sleep is awful (too much insomnia). Then she is like do you sleep during the day? I am thinking how too answer, and say, yes that is when I sleep. She is like well that is your problem! I tell her I have always been this way, but she does not understand! Then she says what about caffeine? I drink to much according to her, but that is how I stay semi-alert during the day. I drink powder tea through out the day, its not coffee... And I explain I had these problems prior to my ever drinking caffeine, and have went off it for 3 mnths before and things got worse not better! Because then I am that much more tired during the day. She really didn't understand and thought I was crazy between that and my arm pain. She actually tilted her notes up close to her and started scribbling a lot! (not good )She also tried to convince me the arm pain I was having was tennis elbow and not bone pain!!! I was like I think after my education I know the difference between tennis elbow and bone pain!!! She also didn't believe that it was allergy induced! I think she was close to locking me up! She did not believe me!!! I do have an appmt with a sleep dr in May, I hope the dr. understands these disorders and is helpful, and not another sleep hygiene queen. No naps! No caffeine! No sleep! Urrrgghh!!!Oh, well!!! It is called Delayed Sleep Phase Disorder and it is a genetic (PER3 gene) circadian rhythm disorder. Unfortunately it is not very treatable. Your sleep doc should definitely be able to see it. Keep sleep logs all during May. PM me and I'll send you a PDF of mine. From that alone, my doc could dx it. There are several therapies to try, but mine didn't work. Your treatment might. I just stay up and watch the fire! Hoo--Hooo! Quote Link to comment Share on other sites More sharing options...
cordila Posted April 28, 2009 Report Share Posted April 28, 2009 Hi Earth Mother:Interesting what you say about histamine. I crashed (the worst in a year!) about 5 days ago - just as the buds were coming out on the trees. I don't have traditional 'allergies' but I do notice the back of my throat swells up a little bit and I have some post-nasal drip. Anyway, I've been struggling to keep my BP up the last 5 days (it's been hovering at 70/40) and nothing has helped. I finally took some Claritin but read that, due to epedrine which stimulates the ANS, it's not a good idea for us POTSies. I'm very interested to hear if anyone else bottoms out come Spring time. My crash was the works: extreme nausea, massive body-rocking tremors, low BP and all that goes along with that. I live in the Pacific Northwest. Seattle to be exact. And seem to be having a hard time with the weather - and now with the allergies. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted April 28, 2009 Report Share Posted April 28, 2009 It is horrible when these bad mornings seem to then blend into a strand of days and then weeks and we are once again looking for a new remedy. Sometimes you may just get a few days of misery too. I hope your spell of struggle passes quickly. I am sorry you are having these experiences more recently. I can't help but feel your fluctuating estrogen is playing a big part of this EM.As for what to do...try everything! Sip those packets of electrolytes mixed with water. Rest, and please, only do what you know won't make you relapse further. Have you considered a "safe" estrogen or estrogen like supplement?I hope today was in fact a bit better.best regards,tearose Quote Link to comment Share on other sites More sharing options...
EarthMother Posted April 29, 2009 Author Report Share Posted April 29, 2009 Thank you Tearose. I absolutely agree my hormones are in the thick of this. The one good morning I had yesterday was just as my period started. But unfortunately that didn't last and today was awful and discouraging. I'd take ANYTHING by way of hormone replacement but so far my tests haven't indicated a need GRRRR. I had been on hormones since I was a teenager up until last October when my Cardio insisted I stop. So at the moment I have no clue what to do. Once I can get this poor perimenapausal body to my PCP I'll see about getting re-tested again and go from there. I have things like progesterone cream, estroval and remifem ... haven't used any of them, because I really have NO IDEA which to take ... but I do have them sitting in a drawer waiting on the sidelines until I can get a clue what to do.Ahhhh tomorrow is another day. Quote Link to comment Share on other sites More sharing options...
Radha Posted April 30, 2009 Report Share Posted April 30, 2009 i know exactly what you are talking about because i go thru the same **** every single morning once i sit up from lying down and then the whole terrible hyper agitation, even leg shaking for 2 hours again in the late afternoonn after i get up to sitting after my nap......so the change in positions and hormonal changes affect me too too strongly and then once my body settles down, it leaves me so so exhausted and drained.......everyday is exactly the same and i so wish those of us who wake up and get up feeling like this could get some relief! what a terrible way to wake up! and i dont want to take stuff like xanax everyday........hang in there,Radha Quote Link to comment Share on other sites More sharing options...
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