Insomnia My Old Friend

[season]

I have had the heart pounding for so long I would need someone to check and see if I was alive if it ever stopped. I wake up in the middle of the night with my heart racing like I was running the derby. I will turn over on my back but that never helps. (sleeping on my left side is impossible because my heart thumps and bumps so loudly). I usually sleep for 3 hours or less.   

I have insisted my heart be checked out but each time my heart dr says that I am fine as long as I keep my blood pressure under control. 

It is the most annoying thing as it is impossible to sleep. I have heard that a pounding heart can be attributed to dehydration and I know the dry throat and mouth at night are terrible too. I have to make myself drink water because I never get thirsty.

Also, our hearts can be affected by sjogrens as other organs in our bodies. I have terrible digestive problems too.

With sjogrens, we have so many things going on at once, I simply don't know if our doctors have a full grasp on all the issues and how to treat them at once.

[MaryBee7]

Thanks for my eyes seeing this!!  Melatonin gave me awful dreams!!  No one believed me. 

[mindytyson3]

Thanks for my eyes seeing this!!  Melatonin gave me awful dreams!!  No one believed me.

I have tried melatonin and it did not work for me. I have to have a prescription for sleeping pills before it does any good.

[stillinshockwithsjogrens]

Melatonin had the opposite effect on me; it made me anxious.   This was before I knew it was contra-indicated for auto-immune diseases.  Obviously, my body was telling me this!

The only way I can truly get good sleep naturally, is to exercise my body.  A 3 mile run/walk, an hour of pilates, cleaning house, brushing the dogs, running errands, cooking from scratch, organizing/reorganizing, etc.  The problem with this scenario is that my body can't do all that anymore, every day.  My body needs to be worked out in order to obtain sound, natural sleep.  In the absence of the level of physical exercise I need but can't get, Ambien helps me get the sleep I need.  Mirtazapine also helped when I lost so much weight and sleep.

I know there are not many advocates of using meds in order to sleep (z meds in particular), but I'll do whatever I need to get my zzz's, otherwise, it's a crappy day ahead and life's too short for any crummy day I can avoid.

I don't care if my GP/Rheumy, etc. say that insomnia is not a symptom of SJS; my body is telling me otherwise.  They say the tinnitus, loss of taste and smell that happened when I had my flare is also NOT a symptom of SJS but since there is no other disease it can be attributed to....and I hear from so many on here that they have suffered the same...it must be part of Sjogren's.  I am so tired of doctors saying that symptoms I have (other than dry mouth/eye) isn't consistent with SJS, I just have to shake my head and realize how much doctors DO NOT know.  Sorry this turned out to be a vent!

[MaryBee7]

Gifted, tinnitus and sleep issues...and rheumies that don't believe...this is why we have to "steel" ourselves to stay on task and move forward with knowing our bodies and remind ourselves daily that we will not allow what's going on symptom wise to be minimized.  When I asked about numbness/tingling/pain in cervical spine and back area, my rheumy said it was probably caused by the way my desk was set up at work...that maybe I should look at refiguring work space/computer.  The list goes on and on.  When I reported bad dreams with Melatonin, got The Look.   It is truly amazing. 

[stillinshockwithsjogrens]

Gifted, tinnitus and sleep issues...and rheumies that don't believe...this is why we have to "steel" ourselves to stay on task and move forward with knowing our bodies and remind ourselves daily that we will not allow what's going on symptom wise to be minimized.  When I asked about numbness/tingling/pain in cervical spine and back area, my rheumy said it was probably caused by the way my desk was set up at work...that maybe I should look at refiguring work space/computer.  The list goes on and on.  When I reported bad dreams with Melatonin, got The Look.   It is truly amazing.

MaryBee, agreed!  Don't you wish the symptoms and discomfort could be all washed away with a quick reconfig of your desk?!!  With all the doctors/specialists I've seen the past year, my experience is they have finite/textbook knowledge of disease and correlating symptoms and dismiss any other symptom you experience beyond that.  Yes, it all comes down to what has been said before; we must be our own advocate. 

I know The Look; lol, I think most everyone here has gotten The Look. 

[Saundra]

I saw two rheumys when this all started and the one I liked best first told me read, read all that you can,  no two people are the same, he said the more I read the more normal I would feel.  Finding this board is the most normal part of my life in the last year.

The other one gave me the look.......

XOXO
Ldy

[brooklyntina]

I'm waking up every night now with a pounding heart. Last night it got up to 140. I can't take it anymore.

[Tinker]

broolyntina,
sorry about your pounding heart.  that must be so annoying.  I can only think it could be a med side effect or something's up with your  heart.

Your name intrigues me.  I had a trip planned to B but had to cancel due to Hurricane Sandy.  R U are Nets fan?

[brooklyntina]

Tonight my pulse got up to 187. I am terrified. I don't have heart disease. WTF is happening to me?

I'm in Brooklyn but not a sports fan. I loved Friday night lights tho!

I'm so scared I think I might have had a heart attack?!? I have an EKG app on my iPhone. I'm not on any meds right now except Advil and mucinex.

I'm freaked out.

[season]

advil and motrin will send your heart racing and your blood pressure thru the roof not to mention it will make you extremely nervous, you will think you are having a heart attack. Some people are sensitive to these meds. I had to stop taking motrin because of this very reason.

Naproxin sodium is another one that sends my heart racing.

[brooklyntina]

Thank you. This is nothing new but way worse than usual. Makes me feel a bit less scared.

[stillinshockwithsjogrens]

Tonight my pulse got up to 187. I am terrified. I don't have heart disease. WTF is happening to me?

I'm in Brooklyn but not a sports fan. I loved Friday night lights tho!

I'm so scared I think I might have had a heart attack?!? I have an EKG app on my iPhone. I'm not on any meds right now except Advil and mucinex.

I'm freaked out.

Mucinex makes my heart pound!  It raises my blood pressure (and I have really low bp).   I don't take it, ever because of that.  Try discontinuing it if you can, to see if you feel any difference. 

[brooklyntina]

Okay I will thanks. I couldn't find that symptom online (except for mucinex D or DM). The dr told me to take it...

I'm honestly going to lose my mind if I can't slow down my heart. My chest feels like a cage of freaked out canaries. I can't live like this.

[Tinker]

Brooklyntina,
A pulse of 187 is tachycardia (rapid heartbeat) and I wouldn't take that the cardio can't find anything.  Something is wrong and it is so debilitating that you are very unneasy.

I'd seek out a different cardio and seek other answers.  There were 3 pages of posts so I am sorry if I didn't read...but, did you have a 24 hr. holter monitor? 

The doc I hope will see this .  Maybe there is something wrong with the electrical impulses in your heart??  Don't know but I hope you figure this out.

Best to you.