Strange feeling upon waking

[Guest veryblue]

Sometimes when I go to wake up, my alarm will go off and I am so dizzy and feeling so strange? I'm not sure what to make of it? The best way to describe it is it's as if my BP fell too low during the night and then it makes it hard to wake up. That or maybe low cortisol levels...which were high a few months ago, but then can be low now I guess...does anyone else have this problem? I feel as if I am going to go to sleep one night and never wake up! I am so scared. This disease has turn me into a paranoid freak...and I used to be the very sane and down to earth soon to be lawyer...and the thing that bothers me to most is #1 I go from neuro to neuro, they play with me for a while and then tell me that my nervous system is fine...must be something hormonal playing with your heart and BP. Oh and #2 I have no way of contracting POTS at all...no family history no nothing...this literally hit me out of the complete blue about 8.5 months ago? What is going on with me?

[geneva]

I can relate. Some mornings, like today, I felt like I was in what I jokingly call my "coma" sleep. Just deep sleep and hard to wake up. For me, that usually means my BP is low. I can easily test this because if my BP is too low, when I stand up, my HR will be very fast...guaranteed. Sure, enough, today it was racing. I keep a 24 ounce of water- with salt added- by my bed and try to drink all or most of it before I get out of bed. That makes me feel much better.

I used to be very concerned about this too but over time learned that for me it seems to be OK. Most of the time I get very poor sleep so when I get a nite of deep sleep it is welcome. I just know I really need to drink a lot of fluid on waking. You might want to ask you GP if this should be a concern for you. He/she might be able to help you as low bp is something "normal" people occasionally deal with and your doctor may determine if it is bp or as you say cortisol levels.

BTW, if I woke to an alarm clock, I would become hyperstimulated immediately I think from the noise and that would probably trigger symptoms.

I wish you the best and don't be so hard on yourself about "freaking" out. Who wouldn't? Over time and with the help of a good doctor, you may be able to define what is "normal" for you. I also hope you will see improvements as many do. Good luck.

[corina]

Hi veryblue,

waking up isn't always easy. I've had times that I didn't know where I was, what day it was whether I should wake the children to go to school or let them slepp because it might be sunday. It's very scaring. There also was a time my alarmclock woke me and I didn't know how it worked anymore so I sat and looked at it becoming very desperate why I couldn't turn it off and all that noise!!! I finally accept these things happen to me although I will have a psychological/neurological test in october because my shorttime memory is getting worse as well. I try to live with me and my POTSy body. I know you can do that too. Try to accept things are very different from how it was (I know it's not easy). Oh and BTW my first two TTT's didn't show POTS, I was very close (as my neuro said) but no. When I got worse again last february POTS was very very obvious so maybe you should have another TTT in a while. Wish you best of luck,

Corina

[Gena]

I often feel the same way when getting out of be and my BP is usually too low when that happens, my heart will also flutter and race when I try to get up. I agree with the others advice about keeping water at your bed, etc.

I don't have a family history, virus or any of the other so called triggers for POTs either. I just came down with my symptoms 2-3 mos. ago. I went to the Mitral Valve Prolapse and Center for Autonomic Disorders in Birmingham. I saw Dr. Sawyer. She did a tilt table test, which didn't show POTs because my blood pressure was actually normal that day, which was a fluke for me, however she did wind up diagnosing me with POTS, dysautonmia and also found mitral valve prolapse in my heart. It was just a relief getting a diagnosis and this support forum has been a huge comfort as well.

[Guest veryblue]

Thanks guys...I thought I was all alone...I have to freaking figure out whats wrong with me though! I mean I will never get better if I dont figure it out. Gena you said you have no family history, virus, etc triggers for POTS but you did say you had fibro, MVP and other symptoms for years before DX with POTS that were suggestive of an autonomic disorder, however, I was hit from being the most healthy person in my family (thats right, I never took a prescription drug for my whole life until this happened and I got beta blockers...and thats almost for 21 years!) to becoming the freak in my family. I will never sit back and let a doctor tell me (which they havent told me anyway) that I will just have to wait and see if it goes away...I'm not that lucky...ovbiousily...I must take control of my own health in order to return to the awesome athelete that I was only 8 months ago!

[blackwolf]

Veryblue, I wake up like that amlost everyday. I ahve a combo of low hr and bp. My hr is about 30-35 when I first wake up and my bp won't read on the wrist monitor I have. I also keep water and crackers by my bedside(couchside in my case, haven't slept in a bed for about 7+years) just like when I was pregnet. I drink about 4 cups of water befor I get up. The crackers start my salt intake of to a good start.

As to neuro docs, there aren't any here that know that much about dysautonmia so I have to travel to find a good neuro.

Blackwolf

[Gena]

Veryblue,

Yes it's true I was dx'd with fibromyalgia in my early twenties, but it wasn't debilitating and it didn't hold me back from anything in life. I never took any meds besides a motrin for my fibro. I considered myself extremely healthy, but then 3.5 years ago I got really ill and lost tons of weight, had weird muscle twitching, stomach pains, etc. I was then dx'd with celiac disease (gluten intolerance). I went on a gluten free diet and my health basically returned to normal for many years. Then in June of this year I woke up in the middle of the night with my heart racing out of my chest, I had intense chest pain, diarrhea, nausea, dizziness, etc. I've never had this happen before in my life so it was really scary. These episodes started happening frequently, so I went to a specialist. It was only a few weeks ago that I was told I have MVP and POTS.

I was like you, very upset, frustrated and angry at my body for failing me and at the medical world for their lack of knowledge and concern. It took several months before doctors could figure out that I had celiac. They put me through a million and one tests and just scratched their heads. I hated them all! Just remember that you are not a "freak". If your family doesn't understand this or have compassion, then try printing out some of the information at potsplace.com and give it to them to read.

You didn't do anything wrong to acquire this illness/symptoms. We don't fully understand what triggers these things. In my case I think it was stress each time that triggered the fibro, celiac and POTS. Please don't blame yourself. Living with POTS definitely takes some lifestyle adjustments, but I am thankful to be alive and to know that I have a great support group on this forum!! Hope it helps to know we're here for you! Sorry for rambling.

[MightyMouse]

Okay, I'm going to probably rock the boat here a bit--but I don't agree that freaking out is normal. Perhaps it's normal in the beginning--but after that, it's not. Persistent thoughts about things like not waking in the morning and constant worry about what actually might be wrong with you and constantly being scared may be linked to depression or anxiety and should not be ignored. My observations of your posts seem to show that you often feel like you might be the only one with your symptoms--feeling alone is also strongly correlated with depression and anxiety. I'm not saying, at all, that this would account for your symptoms that make you feel ill, I'm just saying that you should strongly consider getting help from a pyschologist to help you through this process. Coping with illness is hard.

Additionally, while many of us do fall into certain groups of etiology w/ dysautonomia, some don't. I'm the only one in my immediate family. I may have one cousin with mitral valve prolapse, but that's not necessarily similar to me--I don't have MVP, I've probably have had POTS since birth, and no one knows why.

Do continue to try to find treatment. However, I think focusing so much on "why you" isn't healthy.

I hope you find an accurate diagnosis and helpful treatment. Nina

Edited September 9, 2004 by MightyMouse

[danelle]

very blue,

I wake up atleast 5 days a week(but usually 7) with the same problem(dizzy and feeling strange). I also am very shaky, cold and clammy, and the minute I try and get up the HR goes crazy. It takes me a good few hours to get to a "functional" level for me-which isn't saying a whole lot. Most of the time I get anxious with it to but others I do ok. I know what is going on but yet it still scares me very badly.

Nina is right, I know first hand what she is trying to say because even though I have had this for years (but dx in Nov 03), I still get scared beyond words. I do have lots of anxiety and panic attacks and with all this stuff going on I can now add depression to my list. I wish I could afford some couseling for "coping" mechanisms with a chronic illness. If there is anyway at all you can afford it, give it a try. Please don't take that the wrong way-I think anyone with a chronic illness could use counseling. I know if it were possible, I would be there everyday-atleast for a while

Good advice Nina! Hey, maybe you could do us some online counseling-HEHEHEHE

[danelle]

I just thought of something else Sometimes when I get up my heart will beat much faster than when I'm sitting in bed but not necessarily real fast like other times. --------I will go from 60 in bed to 130 when I get up. Does anyone know if that is too high of a jump in HR or if that is just normal for POTS as well?

[MightyMouse]

Danelle, I got counselling for nearly no money when I first became accutely sick in my early 20's. Many counselling groups offer a sliding scale, as well as state and community service agencies that offer very low cost or free counselling. At the time, I made barely enough to make it from week to week... anyway, while the counselling didn't get me any closer to an accurate diagnosis, it gave me a peace of mind that I really needed...and fuelled my resolve to stay positive.

I'm not licensed to do counselling---my board certification is in behavior analysis, which is basically to be an observer of behavior, to make hypothesis about variable(s) maintaining behavior, and create behavior change plans based on the data. Unfortunately, in the cyberworld, it's not possible for me to directly observe... I can only go by the words people use, which may or may not accurately reflect their actual behavior (or in other words: saying and doing are 2 different things).

sorry for the mini lesson in behavior analysis! Nina

[Merrill]

danelle, just a quick thought--that heart rate differential sounds "normal" for people with pots...

[Ling]

Great to know I don’t have bad mornings on my own. I refer to my mornings as hang overs . I feel like death warmed up everyday of my life. The beta- blocker has helped a bit but some mornings I hold on to the wall until I can walk probably. Just to be honest I HATE MORNINGS. Thank goodness for Jasmine, she gets me out of that bed and started with my day. Jasmine is my beautiful black spaniel. I have mentioned that she is the best medication ever.

As with regards to what I do about all of this. I accept it. You can do nothing about it. My doctor has told me that there is no cure. I have tried so many different types of medication. Nothing works, I believe the best thing I have is my attitude. I get sad every now and again. Even scared when my heart brings me to my knees. I have allot of pain at the moment. But I am grateful for the things I can do and that the symptoms do change. I am so grateful I don’t have all my symptoms at once. They take turns to appear in my life and that is great on its own if you think about it.

Good luck and remember you not alone!

[ramakentesh]

i used to get quite anxious when my symptoms were bad and i my whole body would tremble and id get plaps and dizziness every time i stood.

Im much improved now, but mornings are always the worst until ive eaqten, then i feel better for about two hours, then crap until lunch then much improved.

I thought the TTT was more definitive than what people here are saying. What happens if you book in and have a good day and they test you and it doesnt show up?

[RunnerGirl]

<<I'm just saying that you should strongly consider getting help from a pyschologist to help you through this process. Coping with illness is hard.>>

Well said, Nina. There is nothing scarier than when your body "betrays" you and when you lack a definitive diagnosis. Regardless of the underlying cause of our illnesses or symptoms, we can all benefit from talking to a professional during both the diagnosis and treatment/healing phase. Even though autonomic dysfuction is a true PHYSICAL phenomena, I strongly believe PSYCHOLOGICAL factors (such as stress, anxiety, and depression) can and do exacerbate symtpoms.

Just a fervently as I would suggest one NOT allow themselves to be 'brushed off' with an anxiety diagnosis, I would argue just as strongly that we recognize that anxiety can be an outgrowth of autonomic dysfunction and we should treat that as aggressively as we treat our racing hearts, liable blood pressure, and other symptoms.

Good luck to all struggling with both the physical and mental aspects of this disorder.

RunnerGirl

ps. Veryblue, by the way, I have a wacky autonomic nervous system and I'm STILL an "awesome athlete! Start focusing on what you CAN do, not what you think you can't. I'm not suggesting your symptoms are 'in your head." But maybe you'll find some of them are not as dibiliating as you think they are. My psychiatrist was excellent in helping me make this distinction: Are the SYMPTOMS themselves that dibilitating or is the FEAR OVER THE SYMPTOMS holding you back? For some, the physical symptoms are indeed dibilitating. For others, the symptoms are more a nuisiance and the fear and worry over what they mean is what paralyzes them.