LMG Posted February 20, 2013 Report Share Posted February 20, 2013 For the past several weeks and much of my POTS, I wake up at about 6 am and am so ill. I have nausea, dry heaves, sometimes chills or tremors, and a headache. The headache can lift throughout the day or turn into a migraine. I had a few weeks without this, but still didn't feel well. I get a bit better as day goes on, and don't feel as badly at night. It seems like it is blood flow but I don't know what to make of it. I am on low dose florinef but went off for a while to see if it affected it either way and can't tell. Take some supplements like Mg, and Cq10 but don't think they are the issue. I wonder if it has to do with lying down or bp? Any ideas or does anyone else have this? t It is an awful way to wake up. I used to be a morning person btw. Thanks, Lauren Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 20, 2013 Report Share Posted February 20, 2013 Early AM is often the worst time for POTS symptoms, for many of us. After sleeping through the night you are more dehydrated which can exaccerbate symptoms. My specialist told me to drink water and take salt immediately on awakening to reduce symptoms. there are hormonal changes that naturally fluctuate throughout the day which may play a role in this (feeling worse in the AM). Also I think simply lying down for so long (overnight) affects us--I know for me, changing postiion from lying to standing can bring on symptoms at times and lying around too much can actually make symptoms even worse. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 20, 2013 Report Share Posted February 20, 2013 I would think of two things when it comes to being in bed in the early a.m. Cortisol or blood sugar. Either one could be low at that time. I think I have low blood sugar before my wake-up time, because if I am woken before that time, like at 5:30 or 6, I am so disoriented and drunk-feeling. If I wake up on my own, like at 2 or 3 a.m. to go to the bathroom, I am not disoriented at all. Quote Link to comment Share on other sites More sharing options...
lejones1 Posted February 20, 2013 Report Share Posted February 20, 2013 For my first few months of POTS I used to get the exact same symptoms, every day, although mine usually happened around 4am. It would wake me up suddenly then ease off over a few hours. It was before I had a diagnosis and I wasn't on any medication. I have no idea what caused it (aside from the fact that most of us feel worse in the morning) or why it went away, so I can't be of much help other than to say you're not alone! I still feel much worse in the morning, but just tired and foggy, not ill. And I too used to be a morning person - it's so frustrating! I'm sorry you're going through this and I hope it passes or you find a way to minimize it. Quote Link to comment Share on other sites More sharing options...
Mydoggielovesme2 Posted February 20, 2013 Report Share Posted February 20, 2013 Mornings are bad for me also. I get headaches around 4 am, that last until about 6pm. Then I often feel the best I've felt all day. I will say something that helped was to take water to bed, I drink a large amount just before sleep and get a big drink about 2 am.( Gotta go pee) It's kind of a pain, but it did help a little. Hope you find something that helps you. Quote Link to comment Share on other sites More sharing options...
angelloz Posted February 20, 2013 Report Share Posted February 20, 2013 I have been dealing with the same headache issue. Wake up to head pain..that can ease up or go into a migraine.....past few days it's been the migraine. I feel all over horrible too. Trying to stay hydrated and hope it goes away...... lately my migraine meds make me feel even more hyper and anxious...it's horrible. If I find something that helps I'll let you know.Angelloz Quote Link to comment Share on other sites More sharing options...
looneymom Posted February 20, 2013 Report Share Posted February 20, 2013 Before my son had the flu, his headache had finally gone away. But now its back. His iron and D levels are going to be rechecked again. If they have taken a nose dive again, this may give us the answer to why his hadache came back. Quote Link to comment Share on other sites More sharing options...
LMG Posted February 20, 2013 Author Report Share Posted February 20, 2013 Angelloz- meds don't work for me either or I react. I don't even drink coffee but am trying that today for this headache. Looneymom- keep us posted about the D levels. As for all the good hydration suggestions- I am thinking....what about salt or gatorade at bedtime or in the night? I usually keep two glasses of water on the nightstand and don't drink much of them. Wonder if drinking a full glass at 2 am would do something. I just wonder what happens during the night for all of us? It is not environmental, don't think it is diet...and it all started with the POTS. Keep going back to blood flow. I don't think I could sleep sitting up but wonder about that. Or taking a med at night- like a baby aspirin or florinef at night? Just puzzling it out...keep the ideas coming! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 20, 2013 Report Share Posted February 20, 2013 For me, fluid intake is key. This is not so for everyone. But I do think it explains, for me and probably for many others, why symptoms can be so bad in the AM. Quote Link to comment Share on other sites More sharing options...
TCP Posted February 20, 2013 Report Share Posted February 20, 2013 I feel like crap when I wake a lot, although the all over nerve pain subsides when I lie down. I hate the jittery tremors and feeling sick. I'm drinking more and I hope it helps. Good luck! Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted February 20, 2013 Report Share Posted February 20, 2013 Hi Lauren I definitely notice a difference with blood flow, too, when I'm laying still - unless I'm physically moving around it feels like my blood gets stagnant. I agree that the extra hydration might be worth a try. My mornings improved with Florinef, so I think it was at least partly a hydration issue for me. I didn't have the same symptoms, but extremely sluggish and weak (like waking from hibernation or something). As Sue mentioned, I wonder if blood sugar might be an issue. I found the following quote on this website:http://diabetes.webmd.com/tc/hypoglycemia-low-blood-sugar-topic-overview. I read in on a few other websites that morning headaches are also very common if you've had low blood sugar through the night.Mild hypoglycemia can make you feel hungry or like you want to vomit. You could also feel jittery or nervous.Your heart may beat fast. You may sweat. Or your skin might turn cold and clammy. As Sue mentioned before too, it seems that some of our Potsie bodies do have trouble with processing sugar, so even if the numbers are ok, we could still be feeling the effects of it. It would be an easy thing to check out - if the water didn't do the trick, I might try a middle of the night cracker snacking. I hope you get if figured out! Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 20, 2013 Report Share Posted February 20, 2013 I had the same thoughts as sue...blood sugar or corrosion. I also wonder, since it sometimes progresses into a full migraine, if it could be the way you are sleeping. I find it to be a juggling act between being propped up as recommended for pots and not sleeping with my neck in a position likely to trigger a migraine. I used to sleep on a water pillow and that was great for neck support but it's no good stacked on top of other pillows so I find myself waking with my neck in some strange positions. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 20, 2013 Report Share Posted February 20, 2013 On the subject of pillows, I CANNOT get comfortable anymore! I use 3 pancake-flat pillows, which doesn't support my head up enough. When I add in a new medium pillow, my neck is so uncomfortable. My shoulder/neck joints cannot find the right "prop". Quote Link to comment Share on other sites More sharing options...
Joann Posted February 20, 2013 Report Share Posted February 20, 2013 I am always worse in the a.m. Most of the time it gets better as the day progresses. When I was at my worst I would wake around 4 am and it would be at its ultimate worst until after 6 a.m. After noon I would start to feel a little better and by evening I would feel the best of the day and have an appetite.Lately, it is somewhat better, but I still struggle to do anything early in the a.m. If I am able to sleep later, it is somewhat better. I do wonder if part of it is being still for long periods of time and something chemical that we need at that time. I sleep propped up with many pillows and some of my daughters stuffed animals. I am in a semi sitting position and it helps a little.Oh, and I used to be a morning person also. I would jump up and shower and be off. Now I try to shower in the evening and do any morning prep the night before. Ugh.. Quote Link to comment Share on other sites More sharing options...
tigerbomb Posted February 20, 2013 Report Share Posted February 20, 2013 Huh, I've been having weird 6 am symptoms too (give or take an hour). I wake up with nausea and abdominal cramping, and have to get to the toilet ASAP (if you know what I mean...). Sometimes I'm hot and sweaty too. No headache though. It usually subsides after an hour, regardless of whether I eat or drink anything, which makes me think my 6 am symptoms are probably not dehydration or hypoglycemia.I also used to be a morning person. Ugh indeed. Quote Link to comment Share on other sites More sharing options...
issie Posted February 20, 2013 Report Share Posted February 20, 2013 I've found that sleeping elevated and propped up on pillows makes a huge difference and also making sure my neck is supported. I think for me it has to do with EDS and how easily things can slip out of place in my neck. But, I think it also has to do with blood flow and having things in the right position to help with that. I know another girl who is using a soft cervical collar to sleep and has found that is making huge improvements in her headaches. I have a blow-up cervical collar that stretches my neck and takes pressure off - that I've been using at night while watching TV and that has relieved my headaches and helped me to sleep better. I will also put a heating pad on my neck at night before going to bed. This will vasodilate your veins and help with blood flow. I have found this makes a difference for me too.Issie Quote Link to comment Share on other sites More sharing options...
Relax86 Posted February 20, 2013 Report Share Posted February 20, 2013 Mornings are the worst. And when I was in the heart of my flare I just was so sad to go to bed and scared to wake up. Never knowing the crazy symptoms I would be faced with. Suggestions from this forum were to elevate the head of the bed - helped me a lot. I would salt and drink water before I got up. I sometimes would eat a little slice of cheese before bed to avoid blood sure issues (not sure if this really works but I read it on the forum someplace). I would pump my feet and slide my legs to get blood flowing before I got out of bed and I would move slowly. I definitely believe it's blood flow for me. People would think I was nuts if they knew but I swear I can feel the blood bubbling from my right carotid. Some nights I wake up around an hour after I went to bed and feel the bubbling, short of breath, elevated HR (100BPM)...for no good reason....just laying there. I think those nights correlate with some late night snacking...I need to pay better attention to the foods I eat or time of month. Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 21, 2013 Report Share Posted February 21, 2013 Ahaha .... in my previous post I meant cortisol, not corrosion (but I feel like I do have some sort of bodily corrosion ...must have been an autocorrect Freudian slip!) Lol!sue - I do use a small cervical pillow (little round cylindrical pillow) sometimes, but, I am so sensitive with blood flow that it feels like that actually cuts off my circulation to my scalp at times and I get the pins and needles feeling you get when your arm falls asleep except in my scalp. I have wondered if elevating my bed and going back to my water pillow might be the best option. Quote Link to comment Share on other sites More sharing options...
Charlotte1 Posted February 21, 2013 Report Share Posted February 21, 2013 @ LMG - I also have been wondering about sleeping reclined, rather than flat. Since POTS, I wake up most mornings around 6 am with a headache at the base of my skull..I now keep a cooler with a gel pak in it at my bedside. When I wake up to pain, I lay the cold gel pak on my pillow and then position my head onto it. It dulls the pain most times before a migraine has the chance to develop. I've also noticed that by simply sitting up into a reclined position (slowly) against some piles of pillows, usually the headache will go away. So like you, I also think there is a blood flow issue involved. Lying against the pillows can be uncomfortable so I will be purchasing a bed wedge to allow me to sleep in a reclined position with the hope of stopping the 6am wake up call!I've thought of taking a night dose of florinef but have been told it would keep me awake so be careful about doing that.. Quote Link to comment Share on other sites More sharing options...
Angela Posted February 21, 2013 Report Share Posted February 21, 2013 when i have back kneck pain i fall asleep with an ice pack wrapped in towel. dont notice what elevation does for me tho since I tend to change positions, i am most comfy lying on my right side with 1 pillow wedged between my thighs and one behind my back. i heard before this helps your posture tho, not sure how related this could be for pots but it is could for posture/back. never tried a kneck collar, the ice pack always seemed relieve until I could go back to sleep. ikd about the 6:00 a.m. thing, that's when i usually get up to take my meds and get ready for work. when I was experiencing night/early adrenal surges they were around 4:00 a.m. sleep walking i thing usually occurs arround 12:00 to 4:00 a.m.? Quote Link to comment Share on other sites More sharing options...
LMG Posted February 21, 2013 Author Report Share Posted February 21, 2013 Charlotte- I am going to try the ice packs near the bed. Ice doesn't help once a migraine has got its foot in the door but maybe it would prevent the escalation. If my headaches are left sided, I can mitigate them but if they are on the right side of my head or face, it is a full blown one. I feel it bubbling too, like Relax said. I have had the head of the bed raised for months now and I don't think it has helped. Would a wedge help more than that for us? Quote Link to comment Share on other sites More sharing options...
issie Posted February 21, 2013 Report Share Posted February 21, 2013 I prefer to have lots of pillows over raising the head of the bed. I can tuck pillows around me for better support and to have my back and neck perfectly straight and supported. For me, a lot of the problem is issues with my spine and spurs, arthritis etc. If I don't have the support correct and my body in the right position ----I'll wake up with problems.Issie Quote Link to comment Share on other sites More sharing options...
Charlotte1 Posted February 22, 2013 Report Share Posted February 22, 2013 Like clock work, the headache happened again this morning so I raised my head onto 2 pillows and within 5 min., headache gone! (isn't that weird?) I was too tired/lazy to reach for the ice pak and quickly fell back asleep. Bad move... I woke with a kink in my neck (unstable cervical vertebrae) and a different kind of headache was now starting, from my neck/traps area. Used the ice pak for 10 min. and then rubbed some Voltaren on and popped 2 ibuprofin. Thank God, that did it and i didn't have a migraine today. Honestly, my life is full of migraines so this newest morning routine has been a sanity saver so far. It likely won't work every ime, but if I take care of the pain with these measures, IN TIME, it usually helps me get through at least 1/2 the day headache free, longer if I'm real fortunate.!I didn't get out for to look at the wedges yet but if I do buy one, I'll report back on how its working out for me. I'm hoping the angle won't have me too high. Quote Link to comment Share on other sites More sharing options...
~elizabeth~ Posted February 22, 2013 Report Share Posted February 22, 2013 I have problems in the early hours of the morning, I get very hot and suffer painful facial flushing. Since it's become clear that NE surges cause these symptoms, I did a bit of research and found that there is a spike in NE levels early in the morning when you begin to come out of deep sleep, and again on actually rising. This matches the pattern of my worst problems. Apparently this phenomenon is quite well know, as it's the commonest time of the day to experience angina or heart attacks, for this reason. Stands to reason it will make POTS type symptoms worse. Quote Link to comment Share on other sites More sharing options...
spinner Posted February 23, 2013 Report Share Posted February 23, 2013 have you had an am cortisol saliva test?Sleep test?Both can cause some of what youre describing Quote Link to comment Share on other sites More sharing options...
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