Wake every hour on the hour

[zerohours000]

Hi.  I was just recently diagnosed with autonomic dysfunction --- although it is unclear which exactly it is.  My neurologist seems to think post-infectious.  Anyways, I'm 33 and this came totally out of the blue, as I was literally fine one day and then, another, I progressively seemed to accumulate many different symptoms.  My tilt table test is still pending.  However, as far as I can tell, I've no issue with fainting, dizziness, or syncope.  Which is confusing, especially since my neurologist also thinks I have POTS.  Does anyone else have POTS without those? Probably the worst for me is the lack of sleep.  I literally sleep one hour at a time.  So I'll go to bed around 12 am, say, and sleep initially from 12 to 2:30; then 2:30 to 3:30; 3:30-4:30 etc (and I keep meticulous notes on my sleep patterns.)  I usually wake up with a dry mouth, which suggests I"m breathing through it, and usually my left sinus is blocked or dry as well.  Has anyone else had this issue with their sleep, where it was this disrupted and fragmented?  I'm a constant worrier so I'm afraid this is the worst form of dysautonomia (especially since POTS just seems so unlikely, given my lack of BP or HR issues).  I'm desperately hoping it's not PAF or MSA.  But I also heard from the chief of medicine that post-infectious autonomic dysfunction was actually on the rise in my area (Boston).  And that he had a male, 45, with similar symptoms such as mine, and although he didn't make a "full recovery," after 8-9 months or so he stabilized and is now only left with some digestive issues (after a series of normal tilt table test, MRI, EMGs, etc).  

So if anyone can help elaborate or share their stories about this, I'd be glad to hear and share back.  Thank you.

 

Zer0   

[WinterSown]

I lost my sleep cycle over three years ago. I sleep when I am exhausted and work when i am not. Physical activity and improved nutrition can help with better sleep but may not get you back to where you were. After you get into a maintenance routine you should have better sleep.

 

[zerohours000]

Thanks.  What do you mean by maintenance though?  Has anything worked for you? 

[WinterSown]

11 hours ago, zerohours000 said:

Thanks.  What do you mean by maintenance though?  Has anything worked for you? 

Your doctors will discuss with you ways for you to keep active in your life. Dysautonomia is life changing but it doesn't have to be soul crushing too. I have a wonderful team of doctors that work collectively to improve my life--a cardiologist, an electrophysiologist, a neurologist, and a DPT--a physical therapy doctor, and there's a primary too but he defers to the cardiologist. The cardiologist seems more to work on my entire person and get my body as strong and healthy as is possible to withstand my  worse symptoms, he is all about nutrition and healthy living. I have swinging symptoms and he wants me to achieve balance, physically and in my inner self; the heart, mind, body and soul are all connected. The EP has been knocking down my drugs with the hope of me taking as few as possible some day. It's been micro-management  as he slowly and carefully reduces the doses as I handle the changes. The neuro helps get me out of the fog with cognitive and creative therapy--I love her, she let me create my own self-adaptive neurotherapy program which has been excellent for fog blasting. I read non-fiction, I make things with my hands, I draw and take photographs and have a new hobby of collecting used cookbooks and making new recipes out of them; I love all of that and that's the key--learn more about what you love and don't give up doing what you love doing, just learn to do it differently which stimulates your brain.  I still have some really bad days but the in-between times are longer and I get out of deep fog faster. I go to PT twice a week for balance, gait and strength training--I don't lift weights but I am now strong enough to support my own weight if I think I am going to feint and collapse--I can endure so much more, so much better. I've been in PT for over a year<  i'll keep going as long as I keep getting renewals because the exercise makes me feel better. The neuro said I don't look like a ghost anymore, I have better perfusion now.  DINET's last newsletter has the article I wrote about my therapy, it's called Walking Out of the Fog. 

[p8d]

I,too, am post-viral onset.  I was fine one day, got the stomach flu and have never been the same since.  I can tell you the hour my autonomic nervous system broke.  I had no idea what was wrong just that something was seriously wrong.  I found a group of dysautonomia specialists in my area after six months of seeing every specialist around.  The importance of that cannot be stressed enough.   After three years and some very serious issues I still am housebound but am much stronger.  I didn’t sleep well for 18 months, very similar to what you describe.  I had a consult with a different autonomic specialist (I am extremely lucky to have two in my city) and he suggested sleep was vital and prescribed a couple of different drugs before we hit on Remeron. That has helped tremendously.  He also suggested water treadmill physical therapy which also helped a lot.  I now do physical therapy once a week for strength, balance and endurance.  I have been doing that for 20 months.  I can’t say enough about how that helps but I still can’t be upright for more than an hour and then only once in awhile but that’s a vast improvement.  Like you, at the beginning I was never dizzy, I have never fainted (3.5 years) but had a positive TTT.  I still have trouble finding meds that help because as soon as I find a good combination either one or the other stops working or the weather changes or.. As Wintersown suggests, the stronger you the better able to handle these changes. Two years after I was diagnosed I was also diagnosed with an autoimmune disease and treating that has helped with the fatigue and joint pain etc.  Dysautonomia is a chronic illness and requires re-thinking lifestyle and treatments.  A good thing to do is document all orthostatic BP/HR readings, drugs/supplements taken, activities and symptoms.  Records taken a few times a day will help your Drs figure out some things.   I also suggest reading The Dysautonomia Project, it really explains things well and has chapters devoted to lay people and medical professionals.  There is no known cause and treating symptoms is all that can be done now but research continues and that offers hope.  What you describe many of us have experienced, you are not alone and this is a great place for understanding and questions.

[RecipeForDisaster]

I wonder if you see Dr. Novak because I am also treated in Boston and he told me he had another patient just like me (a woman from Hawaii) who he never did figure out. I appreciate his honesty but it was not inspiring! I also have a non-specific diagnosis and am not sure about it, but I am fairly certain it isn't POTS. I'm in my 30s too but have been sick for a long, long time. I passed out in my early teens "for no reason" and honestly thought it was normal.

 

I have horrible sleep problems as well. I have had a lot of nights just like that, waking every hour, giving up at 2 or 3 am because getting back to sleep is just too hard to yield only another hour of sleep. Metoprolol has helped a bit because my pounding heart is the most difficult symptom to sleep through. You might look into sleep apnea testing-I have that and CPAP has helped somewhat.

[Pistol]

I just realized something: when I first got sick I fought my symptoms and was constantly doing the OPPOSITE of what my body needed. I was passing out all over the place. In those years I could not sleep AT ALL! But since I am disabled and homebound and less active ( actually quite useless ) I sleep like a baby. Whenever I do stress myself from overdoing it I go back to not sleeping. It's almost as if when I push myself the ANS goes into overdrive and when I don't do anything it's OK. Like a sleeping dragon! --- Sorry - just a thought. 

[zerohours000]

2 hours ago, p8d said:

I,too, am post-viral onset.  I was fine one day, got the stomach flu and have never been the same since.  I can tell you the hour my autonomic nervous system broke.  I had no idea what was wrong just that something was seriously wrong.  I found a group of dysautonomia specialists in my area after six months of seeing every specialist around.  The importance of that cannot be stressed enough.   After three years and some very serious issues I still am housebound but am much stronger.  I didn’t sleep well for 18 months, very similar to what you describe.  I had a consult with a different autonomic specialist (I am extremely lucky to have two in my city) and he suggested sleep was vital and prescribed a couple of different drugs before we hit on Remeron. That has helped tremendously.  He also suggested water treadmill physical therapy which also helped a lot.  I now do physical therapy once a week for strength, balance and endurance.  I have been doing that for 20 months.  I can’t say enough about how that helps but I still can’t be upright for more than an hour and then only once in awhile but that’s a vast improvement.  Like you, at the beginning I was never dizzy, I have never fainted (3.5 years) but had a positive TTT.  I still have trouble finding meds that help because as soon as I find a good combination either one or the other stops working or the weather changes or.. As Wintersown suggests, the stronger you the better able to handle these changes. Two years after I was diagnosed I was also diagnosed with an autoimmune disease and treating that has helped with the fatigue and joint pain etc.  Dysautonomia is a chronic illness and requires re-thinking lifestyle and treatments.  A good thing to do is document all orthostatic BP/HR readings, drugs/supplements taken, activities and symptoms.  Records taken a few times a day will help your Drs figure out some things.   I also suggest reading The Dysautonomia Project, it really explains things well and has chapters devoted to lay people and medical professionals.  There is no known cause and treating symptoms is all that can be done now but research continues and that offers hope.  What you describe many of us have experienced, you are not alone and this is a great place for understanding and questions.

Yes.  I know the exact day and hour.  I was on the phone with a co-worker, feeling actually quite wonderful about something the night before, and then I told her, hang on, I'm feeling very ill.  And the next week was a mad blitz to ERs, Urgent Cares --- and I was inbetween insurances at the time!

My neurologist is indeed an autonomic specialist but I'm losing faith in her.  It's only been 3 months but I feel like things (especially days) move so slowly.  I will definitely look into another autonomic specialist.  Because the lack of sleep, or broken sleep, is killing me quite literally, and reeking havoc on my mental state (I had to quit my primary job).  

I've been keeping an ongoing sleep and symptoms tracker since day 1.  So that is, yes, a great idea, as I've been able to give instant feedback to my doctors --- even though they're still hung up on the idea that this is "mental" (which just seems lazy to me.  If that's the case, all diseases or illness could fall under mental/brain related).  I haven't done my BP/HR in a while so maybe I'll start doing that again.  Really, my biggest issue right now is I have little support system.  I can't move back in with my mother and my father is in another state.  I'll look into that book.  Because I"m at wit's end about this all.

 

Best,

Zer0

[zerohours000]

1 hour ago, Pistol said:

I just realized something: when I first got sick I fought my symptoms and was constantly doing the OPPOSITE of what my body needed. I was passing out all over the place. In those years I could not sleep AT ALL! But since I am disabled and homebound and less active ( actually quite useless ) I sleep like a baby. Whenever I do stress myself from overdoing it I go back to not sleeping. It's almost as if when I push myself the ANS goes into overdrive and when I don't do anything it's OK. Like a sleeping dragon! --- Sorry - just a thought. 

Did you have to go on disability?  It's not something I'm looking forward to but I've already lost one job and it looks like I might have to quit this one soon.  The only good thing about this job is I actually live there --- as a Resident Assistant.  The problem is, I get no sleep here and it requires a lot of energy I simply do not have.  I'd gladly be "useless" if I could stay home and do things I want to do, but I don't even really have a home per se.  Just sort of a drifter with family nearby.  

Thanks for replying,

Zer0

[zerohours000]

2 hours ago, RecipeForDisaster said:

I wonder if you see Dr. Novak because I am also treated in Boston and he told me he had another patient just like me (a woman from Hawaii) who he never did figure out. I appreciate his honesty but it was not inspiring! I also have a non-specific diagnosis and am not sure about it, but I am fairly certain it isn't POTS. I'm in my 30s too but have been sick for a long, long time. I passed out in my early teens "for no reason" and honestly thought it was normal.

 

I have horrible sleep problems as well. I have had a lot of nights just like that, waking every hour, giving up at 2 or 3 am because getting back to sleep is just too hard to yield only another hour of sleep. Metoprolol has helped a bit because my pounding heart is the most difficult symptom to sleep through. You might look into sleep apnea testing-I have that and CPAP has helped somewhat.

Yes --- I am indeed now looking into sleep testing.  I had one done maybe 10 years ago too --- and all it showed was I had almost nil for REM sleep.  So I was already a poor sleeper, I guess.  Now it feels like something much more nefarious at work, menacing my system.  What I wouldn't do for 4 hours of refreshing sleep!  

 

Best,

Zer0

[zerohours000]

14 hours ago, WinterSown said:

Your doctors will discuss with you ways for you to keep active in your life. Dysautonomia is life changing but it doesn't have to be soul crushing too. I have a wonderful team of doctors that work collectively to improve my life--a cardiologist, an electrophysiologist, a neurologist, and a DPT--a physical therapy doctor, and there's a primary too but he defers to the cardiologist. The cardiologist seems more to work on my entire person and get my body as strong and healthy as is possible to withstand my  worse symptoms, he is all about nutrition and healthy living. I have swinging symptoms and he wants me to achieve balance, physically and in my inner self; the heart, mind, body and soul are all connected. The EP has been knocking down my drugs with the hope of me taking as few as possible some day. It's been micro-management  as he slowly and carefully reduces the doses as I handle the changes. The neuro helps get me out of the fog with cognitive and creative therapy--I love her, she let me create my own self-adaptive neurotherapy program which has been excellent for fog blasting. I read non-fiction, I make things with my hands, I draw and take photographs and have a new hobby of collecting used cookbooks and making new recipes out of them; I love all of that and that's the key--learn more about what you love and don't give up doing what you love doing, just learn to do it differently which stimulates your brain.  I still have some really bad days but the in-between times are longer and I get out of deep fog faster. I go to PT twice a week for balance, gait and strength training--I don't lift weights but I am now strong enough to support my own weight if I think I am going to feint and collapse--I can endure so much more, so much better. I've been in PT for over a year<  i'll keep going as long as I keep getting renewals because the exercise makes me feel better. The neuro said I don't look like a ghost anymore, I have better perfusion now.  DINET's last newsletter has the article I wrote about my therapy, it's called Walking Out of the Fog. 

Thanks.  I'll read it today.  I guess it's so early in my diagnosis that I might not even had the full array of symptoms of certain things.  I was diagnosed 1 month into having symptoms --- which is like 80% earlier than 99% of the people who have some autonomic disorder.  So it's possible I haven't even felt the largest brunt of the storm.  My neurologist has made weird comments like "it takes about 6 months for this to 'clear up'" before I could get back to baseline, but that seems disingenuous.  I mean.  Nothing I've read about dysautonomia "clears up."  In fact, it appears to be chronic struggle for all involved on the spectrum.

Happy all your maintenance is going well.  I'm just so early into this I don't quite have my bearings or know where to start.  Still haven't even got or done all the tests I need.  I suppose there are many more doctor's appointments I need to go to first!

Best,

Zer0

[WinterSown]

I know where she got that six months idea, I know exactly where she got it. It's in a the wikipedia article in a sidebar. IMHO, it's completely wrong and needs to be edited. I recently discussed the 'six months' erroneous wiki content and that it is misleading and needs to be updated to more current and honest content.

It doesn't take six months to clear up or we'd all be cured. Good grief. I can suggest you read and print out DINET's Dysautonomia survey results, use a hi-lighter to mark what pertains to you and share it with your doctor. It will give her an eye-opening as to the realities of what living with Dysautonomia is really like. 
 

[zerohours000]

Yeah.  I'm not sure why she said any of that to me.  I've pestered her about what comes at the end of this magical 6 months.  But she just keeps saying "we're looking for the best possible outcome."  Based on what?  She's seen me precisely twice.  I just don't know how she can claim to be an autonomic specialist and make these pie in the sky claims on the one hand, and then be nebulous on the other when pressed for answers (even if there are not concrete answers --- I'd rather her just say just that: there are no concrete answers at this moment or in 6 months).  

Thanks for this.  I'm still so new to this.  I can almost taste what my old life was like and yet it's mostly just getting bitter in my mouth with the onset of this new life --- which I can't say is much life at all.  

Best,

Zer0

[Pistol]

@zerohours000 Hey - to answer your question in your earlier post - I don't know how to cut-and-paste the quotes, sorry - : yes, I am on disability. And NOOO! You do not want to go there, you do NOT want to stay home and be useless because you do NOT GET to do what you want, at all!!! You want to fight this to the end, with all teeth and claws bared. Listen to your body and take the docs with a grain of salt, unless you are very comfortable with your doc. There is a lot of misunderstanding about POTS in the medical community. You are right to question your doc, but PLEASE do not give in to the notion that you have to be disabled. Most people with dysautonomia can lead a very fruitful life. 

[zerohours000]

1 hour ago, Pistol said:

@zerohours000 Hey - to answer your question in your earlier post - I don't know how to cut-and-paste the quotes, sorry - : yes, I am on disability. And NOOO! You do not want to go there, you do NOT want to stay home and be useless because you do NOT GET to do what you want, at all!!! You want to fight this to the end, with all teeth and claws bared. Listen to your body and take the docs with a grain of salt, unless you are very comfortable with your doc. There is a lot of misunderstanding about POTS in the medical community. You are right to question your doc, but PLEASE do not give in to the notion that you have to be disabled. Most people with dysautonomia can lead a very fruitful life. 

I'll keep that in mind.  Because some say "don't push your body to do what it can't now" but point taken.  Honestly, I'm just mostly depressed.  I was winded just walking up and down a few flights of stairs just now.  

Zer0

[p8d]

I agree 100% with @Pistol.  I,too, am home bound and on disability, it sucks (that’s not even strong enough) missing every party, dinner invitation, travel opportunity etc.  I can’t go to stores to shop for anything, do laundry, cook, clean the house etc etc.  I can barely walk around the block on a good day without having to rest for a few days afterwards.  You need to listen to your body and learn your limits, what activity and exercise you can do that won’t set off symptoms and slowly, slowly, build up from where you are.  A stronger body can withstand the changes in weather, emotional and physical hits that can be very difficult for our screwed up bodies to deal with.  Read all you can, print off research articles to share with Drs open to receiving them and find a dysautonomia specialist.