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Sjogrens Topics => Living With Sjogren's => Topic started by: SonicEm on January 06, 2013, 01:31:28 PM

Title: Insomnia My Old Friend
Post by: SonicEm on January 06, 2013, 01:31:28 PM
Hey All,

Insomnia is such a problem for me. In between this being winter and my dryness has kicked up a notch, I wake up every few hours and my heart is pounding. I'll take propranalol to get it under control, then can't go back to sleep.

Hormones are an issue. I've been on HRT for years. Last spring my new GYN upped my estrogen dosage and put me on DHEA thinking this was going to help my insomnia. It did for a while then I started having heart pounding problems. I read that heart pounding is a side effect to DHEA so I got off that. It seemed to get better but now the pounding is back so now am trying to taper off the estrogen too to see if that will help. I don't take anything else other than fish oil.

In the meantime I've seen two different cardiologists - did a Holter test and EKG. Both said there is nothing wrong with my heart and to get off the HRT. My GYN says the heart pounding should not be from the HRT! Ack! I feel like I'm in between a rock and a hard place here. Don't know who to talk to and how to solve this.

Insomnia sucks! I did get off the benzo I was on for months (Klonopin) back in September. So it's been 3 months since I'm off that. Now back on Ambien to help with the sleep but it makes my head feel achey the next day. I can't afford to not sleep as my symptoms get worse.

Hope someone can help - feeling really down today and so exhausted.
Title: Re: Insomnia My Old Friend
Post by: MaryBee7 on January 06, 2013, 03:27:37 PM
Hi Sonic.  My last rheumy listed sleep deprivation in notes of my medical record.  Am trying to research more about sleep disorders & Sjogren's.  Would love to talk more with you, message me!
Title: Re: Insomnia My Old Friend
Post by: odie on January 06, 2013, 05:00:13 PM
I had heart pounding for a couple of years prior to Sjogren's diagnosis.  It resolved once I started Plaquenil though I can't see a connection.

Insomnia has been a major complaint for a few years and I have had to take something to sleep most nights since.  For a while it was Ambien but it was only effective for about 3 hours.  I recently restarted gabapentin (Neurontin) as a migraine prophylactic and found if I take the bulk of my daily dose before bedtime it reduces or sometimes eliminates my need for a sleep aid.  My neurologist who prescribed it says that some people do take it for sleep.  It's not addictive and for me doesn't leave a sleeping pill hangover. If I still need something I'll take a small dose of Klonopin.  Getting good sleep is paramount.
Title: Re: Insomnia My Old Friend
Post by: SonicEm on January 06, 2013, 07:45:48 PM
I had heart pounding for a couple of years prior to Sjogren's diagnosis.  It resolved once I started Plaquenil though I can't see a connection.

Insomnia has been a major complaint for a few years and I have had to take something to sleep most nights since.  For a while it was Ambien but it was only effective for about 3 hours.  I recently restarted gabapentin (Neurontin) as a migraine prophylactic and found if I take the bulk of my daily dose before bedtime it reduces or sometimes eliminates my need for a sleep aid.  My neurologist who prescribed it says that some people do take it for sleep.  It's not addictive and for me doesn't leave a sleeping pill hangover. If I still need something I'll take a small dose of Klonopin.  Getting good sleep is paramount.

Hi Odie,

Thanks so much for your kind reply. Since I don't have any other explanation for my heart pounding and insomnia, it must be SjS related? I am just looking for straws here.

So glad you were able to find a solution - insomnia is the worst I can bear right now.
Title: Re: Insomnia My Old Friend
Post by: stillinshockwithsjogrens on January 07, 2013, 12:58:32 AM
Insomnia has been an issue for me since my Sjogren's symptoms started to really develop over the past few years; I thought it was due to menopause before I was dx'd.  My symptoms become unbearable without good, sound sleep; so I do whatever I need to do (my physician agrees) in order to get it.  Ambien doesn't have any nasty side effects for me, thank goodness!
Title: Re: Insomnia My Old Friend
Post by: MaryBee7 on January 07, 2013, 02:05:09 AM
Gabapentin does help with sleep, it is a wonder drug in many ways.  Docs can give opinions all they want to classify why this or that is wrong, I know my sleep problems are a Sjogren's complication.  A "syndrome" is multi faceted.  It's interesting to me that when all of the symptoms starting gaining speed...coming to the surface, my sleep problems increased right along with the rest. 

With Sjogren's being so predominantly a female disease affecting many of us in peri & post menopausal life, docs will always (it seems) start there. I sought HRT on my own, dying for relief of fatigue/night sweats/sleep loss...to no avail.  That was also pre dx.   The process of crossing one test after another off the list...Ugh...in itself is exhausting.

The heart pounding thing is completely weird and a bit scary, try deep breathing through it...that helps me.  Thought I have read about Sjogren's and blood sugar issues...?  Does that ring a bell for anyone? 
Title: Re: Insomnia My Old Friend
Post by: SonicEm on January 07, 2013, 12:13:34 PM
GiftedPooch - thank you so much for your reply! My rhumie #1 says insomnia has nothing to do with SjS! I should be sleeping like a baby except for the dry mouth. Rhumie #2 wants to help and I'm going to call her today.

MaryBee - I am expert at deep breathing! Also do meditation, yoga and qigong. The heart pounding is NOT anxiety related although I do have anxiety - who does not among us? Mostly health related. Nothing too severe. The heart pounding is ALL the time now. Some more than others. Especially at night when I get up from bed.

Some have suggested I get my thyroid checked out and will be doing that today and seeing an endocrinologist on Thursday. Also getting my hormone levels checked both estrogen and testosterone. Just to see if that is part of the problem or not.

Called the compounding pharmacy and asked if I could get an estrogen cream to start with that - I need to be able to taper exactly. Cutting a patch just doesn't cut it! Too inexact and I end up getting hot flashes if I cut too much too soon. Ack!

RE: sleep I'll check gabapentin (neurontin). I'm sure it has side effects? Have you experienced any? Do you feel groggy the next day at all? I see dry mouth and palpitations are listed - also you can't just stop taking it as it affects the CNS , you'd need to taper off it.

Just saw this: http://www.medscape.com/viewarticle/772249

I am just running out of ideas here - really just exhausted and not getting ANY deep restorative sleep. I feel like zero energy, can't exercise, do chores, etc.
Title: Re: Insomnia My Old Friend
Post by: reesatay on January 07, 2013, 02:18:58 PM
I was waking up with a pounding heart and wondered if I was having some apnea issues.  I took a sleep study that showed I have mild sleep apnea.  You might look into doing a sleep study too.  You can do it at a sleep center or at home.  I did the home study for 3 night and my insurance covered everything but $75.
Title: Re: Insomnia My Old Friend
Post by: MaryBee7 on January 07, 2013, 04:00:40 PM
I really like gabapentin.  I feel no worse for taking it than I did before taking it.  Before starting it I had bad neuro. pain in legs at night.  I take 600 mg at bedtime.  I would be unwilling to give it up, if I had to pick something. 

The people here have been really helpful (and patient!) with me and all my symptoms...we have talked about thyroid issues before.  I am a bit "expectant" of mine eventually causing problems because it runs in the family but nothing yet.  I've been requesting to have this test done more often, from what folks have posted here (forgive my brain fog) your thyroid can be out of kilter and not show up. 

On the hormones, hope you have success if you choose that path, I had none with HRT.  I could not absorb the creams or patches, so had the pellet implants done (2 rounds).  After finding blood levels were just where they needed to be, for both estrogen and testosterone, my symptoms were still the same:  horrible fatigue, insomnia and never ending night sweats.  What a wet blanket I am   ::)
Title: Re: Insomnia My Old Friend
Post by: odie on January 07, 2013, 04:53:05 PM
Regarding gabapentin,  I like it also besides helping with sleep.  It calmed my brain down almost immediately and helped me think more clearly.  Unfortunately, it doesn't do much for my migraines but since it is used for neuropathy and I have some mild PN, I see no reason to stop it.  As far as side effects, the first few days I was a little groggy but quickly got used to it.  At low doses, side effects are minimal.  I never have noticed dry mouth or palps and I'm very sensitive to meds. At higher doses, some tapering would be necessary.  But I have been on and off of it 3 different times and never tapered.  My max dose has been 600 mg which is on the low side.  It's such an inexpensive med and really so benign that it is worth a try if you can get your doc to prescribe it.

Regarding hrt, I prescribed them for myself and experimented to find the dose that makes me feel best.  I use the Estradot 50.  I get it from a reputable online pharmacy that doesn't require a rx.  I've checked my levels occasionally but after being on it for 3 years I've come to know how it effects me quite well. It never made a difference in my heart pounding. 

The heart pounding was driving me crazy.  My doc thought I was crazy/depressed/anxious.  None of which was true.  I tried beta blockers which made me so weak I couldn't stand.  My doc wanted me to use Xanax which didn't help at all except that I didn't care about the pounding for a few hours. It really wasn't until I started on Plaquenil that it settled down.  I wish I had an explanation for it.  But since I was also having periods of shortness of breath before Plaquenil that I no longer have, I have a feeling that the pounding and breathing issues were SJS related.

Title: Re: Insomnia My Old Friend
Post by: brooklyntina on January 07, 2013, 09:58:31 PM
Hi guys,

I have to say that the heart palpitations are currently my worse symptom, closely followed by eye dryness, achiness, insomnia and difficulty breathing. It scares the heck out of me.

Maybe we can figure this out together. Here are my rep theories:

1. It's neuropathy. My heart itself is fine but the wiring is messed up. Possibly from Lyme hanging around my neural pathways. I'm taking b vitamins and also ALA in addition to anti virals (garlic, silver, coconut oil and another herb I can't remember right now).

2. Dehydration causes our BP to get wonky causing the heart to race which causes sinus issues. Solution: water And coconut water Etc. and up oil intake.

3. Magnesium and potassium deficiencies. Eat a banana, take a supplement.

My cardio has nothing for me except to " take it easy and come back often"

I hope this helps. Honestly, I'm very frightened by this. It's awful.

Be well all...
Title: Re: Insomnia My Old Friend
Post by: brooklyntina on January 07, 2013, 10:01:36 PM
Oh and regarding hormones, I'm in my late 30's and the palpitations started during a pregnancy and never went away. Much worse before my cycle kicks in. Not sure of the correlation but its definitely there.
Title: Re: Insomnia My Old Friend
Post by: SonicEm on January 08, 2013, 09:00:00 PM
BrooklynTina - I am so glad you are exploring non-Rx alternatives! I have hope my good nutrition and supplements will help.


MaryBee and Odie - I am holding off on the gabapentin and plaquenil for now. I need to see if ANYthing else can work. I am just loathe to start on another drug.

For now, I've got a "working" solution - it's called naps. I recently have been able to fall asleep in the late afternoon for on hour or two. I have no problem falling asleep. I then get up, make/have dinner then get to sleep again around 11PM. I sleep until 3/4 and wake up. A few nights I took Ambien when I woke up and it did nothing so I'm now trying to get off it and just not take anything so I can clear out my head. Even tried Trazodone - that stuff makes me so fuzzy the next day!

The heart pounding is still around. I had a blood test and will see the endocrinologist on Thursday so will report back after that. I've had problems with hypothyroidism before but it went away by itself. I do think my hormones are wacky now - stopped taking DHEA and the progesterone and now am tapering the estrogen so things are in flux.
Title: Re: Insomnia My Old Friend
Post by: MaryBee7 on January 09, 2013, 01:54:28 AM
The Sjogren's Foundation says that something around 80% of us report sleep problems.   I get furious when docs dismiss this very important issue. 
Title: Re: Insomnia My Old Friend
Post by: cargillwitch on January 09, 2013, 04:58:09 AM
I just read on a blog today about a study( small Finnish one) that concluded people with primary Sjogrens syndrome have a high rate of  cardiac electroconductive disorders (tachycardia being one).

I would also suggest looking at thyroid  hormones and vitamin and mineral levels in the blood. Low magnesium can cause insomnia- once I started to get my levels under control- still have to take a lot each day - both the pounding heart and insomnia have abated.

Anemia or just even low ferritin levels can also cause rapid heart rate. Some medications can alter our absorption of nutrients, make sure your levels are checked regularly!
Title: Re: Insomnia My Old Friend
Post by: SonicEm on January 09, 2013, 01:46:39 PM
I just read on a blog today about a study( small Finnish one) that concluded people with primary Sjogrens syndrome have a high rate of  cardiac electroconductive disorders (tachycardia being one).

I would also suggest looking at thyroid  hormones and vitamin and mineral levels in the blood. Low magnesium can cause insomnia- once I started to get my levels under control- still have to take a lot each day - both the pounding heart and insomnia have abated.

Anemia or just even low ferritin levels can also cause rapid heart rate. Some medications can alter our absorption of nutrients, make sure your levels are checked regularly!

Hi CargillWitch,

Thanks for the info! I just got a magnesium supplement called Natural Calm by Natural Vitality. It has about 150mg per teaspoon - you mix it with water and drink it. I'm going to start that tonight.

Can you tell me how much magnesium you take to be effective for insomnia?

I just got a blood test to check my thryoid - should know by tomorrow maybe. Will report back.

Last night was awful! I could not sleep and ended up taking a small Ambien - slept about 4 hours and feel so out of it today. Missed my exercise class and did not feel like getting out of bed at all...
Title: Re: Insomnia My Old Friend
Post by: SonicEm on January 09, 2013, 01:51:47 PM
The Sjogren's Foundation says that something around 80% of us report sleep problems.   I get furious when docs dismiss this very important issue.

Rheumie #1 says I should NOT be having insomnia! Just dismissed it outright...so frustrating. I just called rheumie #2 - will try to get an appointment and see if we can work this out. No one seems to be helping me on this. The cardiologist points to the GYN and the GYN points back. Cardiologist says pounding heart is a chemical problem, GYN says it's not. Both are not helping me!

I just don't know what else to do at this point, other than to take Ambien when I need it. I'm exhausted and tired of feeling tired, not exercising at all. I will start on magnesium tonight.
Title: Re: Insomnia My Old Friend
Post by: MaryBee7 on January 09, 2013, 02:00:37 PM
It's a true frustration when docs don't agree.  It's like being Ping Ponged.  Find a way to take a little of this...a little of that from each of them -- knowledge wise and apply what feels best -- as there doesn't seem to be one right way to treat our Syndrome of Symptoms. 
Title: Re: Insomnia My Old Friend
Post by: cargillwitch on January 09, 2013, 03:14:07 PM
I take 600mg of magnesium a day. My blood levels were very low, and it appears I don't absorb it well .

Low levels can cause anxiety, insomnia, muscle twitching, teeth grinding,  constipation and a whole host of other wonderful things. I had each one of the above.

If you are just starting do so with a small amount, 150mg would probably be a good starting point. for some people who absorb it well too much will give you "the runs" pretty quick. Work your way up to a higher level if you need to.

I take 600mg spaced out over the day to keep my levels better. I take my last dose just after supper and it is the large one at 300 mg, it really does seem to help me with insomnia. i forget to take it for a few days and I don't sleep and am backed up in the bowel department. It's a good reminder!
Title: Re: Insomnia My Old Friend
Post by: SonicEm on January 11, 2013, 12:44:49 PM
So just an update.

My GYN and cardiologist talked finally and agreed I should see a shrink! The pounding heart and insomnia is just anxiety they say. Not! I begged to disagree.

So Monday I have an appointment to see Dr. Nancy Carteron the rheumie. Saw her last spring and she was the one who suggested it might be my hormones causing my dryness since all my markers were negative, even the lip biopsy done during the SjS study at UCSF. But of course we all know how difficult and long it takes to diagnose SjS. My symptoms since then have progressed.

Saw the endocrinologist and she found I have hypothyroidism. Started on Synthroid. This may be the cause of the insomnia?

Also am having problems with my airways feeling constricted at night. Am sure this is probably due to my taking sleeping pills to sleep. At least that's what it said at the sleep apnea site I went to. Will try another med tonight Trazadone instead of the Ambien and see if that helps me get more deep REM sleep.

So frustrating!
Title: Re: Insomnia My Old Friend
Post by: MaryBee7 on January 11, 2013, 03:15:02 PM
Hey Em, if you find a solution....box up some and send it my way!!   :-*     Hugs and hope you find a solution very very soon!
Title: Re: Insomnia My Old Friend
Post by: THE BRIT on January 11, 2013, 04:13:46 PM
  It is so nice to see in a weird sort of way that other people have a pounding heart.  I find it is thee worst when I am really tired which is alot of the time.  I am just trying a new happy pill which is supposed to help with sleep so we will see.  I also have thyroid problems and we keep adjusting the dose to try and find the right one so maybe that is a part of it.  The synthroid has done absolutely nothing to help with my sleep.  I used to take Neurontin for my fibro but would fall asleep at work in the afternoon.  It was a great sleep aid as I was out like a light and would thump on my desk.  I got into trouble for setting a bad example to the newer staff though I was in my cubicle when this was happening.  I take 250mg magnesium a day.  I would love to find something to help me sleep.
Title: Re: Insomnia My Old Friend
Post by: SonicEm on January 11, 2013, 04:25:09 PM
MaryBee - I sure will report back if I find something - good news is always so rare these days.

TheBrit - sorry to hear about your sleep problems. Some others have suggested I try neurontin and others say plaquenil has helped them with sleep. I'll keep that in mind when I see the rheumie on Monday.

Until then, took the day off today as I slept so poorly and my heart is pounding so bad today. Seems to come every other day now - slept pretty good two nights ago but last night was awful. Feel useless and ill today with tinnitus worse too. Hope I can catch some zzz's tonight!

Thanks so much for your support! It helps to know I'm not alone in all this as the hubbie is great but getting burned out with this sleep thing. Being worried about money does not help either.
Title: Re: Insomnia My Old Friend
Post by: Myshkin on January 14, 2013, 01:42:26 PM
Oh so happy to see this thread

Thought I was loosing my mind here. I am waking up every night with a pounding heart and gasping - completely loosing it... And no idea what the heck is going on. I have been insomniac before but never in this way (just got my sjogren's diagnose this summer).

This sucks - but I am at least glad to see I am not loosing it all together, and that there is something going on other than some sort of weird panic attack, that i haven't tried before.
Title: Re: Insomnia My Old Friend
Post by: Tinker on January 14, 2013, 04:47:13 PM
Hi everyone,
I join you all in your misery.  I am up until 4 and 5 am lately.  I'm already taking 900 mg gabapentin which was helping with sleep but not anymore.  I had been on 300, then 600, now 900.

Already take 2 other sleep aids, got off the melatonin after Dr.  Oz warned of the negatives of that.

I have a routine to help get sleepy, but nothing is helping.

The endocrinologist told me it's neurological in nature ( had chemo which damaged me) .

Any suggestions that have helped you I'd love to hear.  Struggling and just miserable and lethargic and sad. 
Title: Re: Insomnia My Old Friend
Post by: Myshkin on January 14, 2013, 04:52:33 PM
Hi everyone,
I join you all in your misery.  I am up until 4 and 5 am lately.  I'm already taking 900 mg gabapentin which was helping with sleep but not anymore.  I had been on 300, then 600, now 900.

Already take 2 other sleep aids, got off the melatonin after Dr.  Oz warned of the negatives of that.

I have a routine to help get sleepy, but nothing is helping.

The endocrinologist told me it's neurological in nature ( had chemo which damaged me) .

Any suggestions that have helped you I'd love to hear.  Struggling and just miserable and lethargic and sad.

What did he say about melatonin???
Title: Re: Insomnia My Old Friend
Post by: Myshkin on January 14, 2013, 05:01:43 PM
I have always claimed melatonin lowered my seizure threshold and induced seizures in me. My neuro didnt believed me but I see studies now of it!!!! (Love being right...)
Title: Re: Insomnia My Old Friend
Post by: Tinker on January 14, 2013, 05:33:50 PM
myshkin,
You may be right.  Dr. Oz did a big show on melatonin and it's dangers.  Most of us should only take 2 mg for a short time.  I was taking 10 mg and it worked for a few mos. then it didn't do anything.

Dr. Oz's website says that melatonin is a hormone and the pill form does not replicate the body's natural hormone.  It affects the brain and circadium (sp>) rhythm.
These side effects were listed:  Melatonin can have side effects. Doses of melatonin (2-3 mg or higher) have reported side effects of:
Headaches
Nausea
Next-day grogginess
Hormone fluctuations
Vivid dreams and nightmares

I suggest going to his website to get more info.  Since it wasn't helping me, I just stopped taking it cold turkey.

It does affect the brain...so you may have been right about the seizure problem.  Hope this helps.
Title: Re: Insomnia My Old Friend
Post by: Myshkin on January 15, 2013, 12:22:25 AM
Thanks. Just found some new studies on pubmed about melatonin and seizures. I haven't taken melatonin at all since then (horrible experience). But always nice to see its not all in my head


myshkin,
You may be right.  Dr. Oz did a big show on melatonin and it's dangers.  Most of us should only take 2 mg for a short time.  I was taking 10 mg and it worked for a few mos. then it didn't do anything.

Dr. Oz's website says that melatonin is a hormone and the pill form does not replicate the body's natural hormone.  It affects the brain and circadium (sp>) rhythm.
These side effects were listed:  Melatonin can have side effects. Doses of melatonin (2-3 mg or higher) have reported side effects of:
Headaches
Nausea
Next-day grogginess
Hormone fluctuations
Vivid dreams and nightmares

I suggest going to his website to get more info.  Since it wasn't helping me, I just stopped taking it cold turkey.

It does affect the brain...so you may have been right about the seizure problem.  Hope this helps.
Title: Re: Insomnia My Old Friend
Post by: mindytyson3 on January 15, 2013, 07:03:03 AM
Insomnia has been an issue for me since my Sjogren's symptoms started to really develop over the past few years; I thought it was due to menopause before I was dx'd.  My symptoms become unbearable without good, sound sleep; so I do whatever I need to do (my physician agrees) in order to get it.  Ambien doesn't have any nasty side effects for me, thank goodness!

I have been dealing with insomnia since I was a teenager (now 30). My recent doctor put me on ambien and its been working just fine but I have been on prescribed sleeping meds before and I know after taking them for at least a month my body gets use to them and they don't work anymore so I guess I will see how that goes and what we can do about that when the time comes.  :)
Title: Re: Insomnia My Old Friend
Post by: season on January 15, 2013, 09:19:21 AM
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.
Title: Re: Insomnia My Old Friend
Post by: MaryBee7 on January 15, 2013, 04:58:03 PM
Thanks for my eyes seeing this!!  Melatonin gave me awful dreams!!  No one believed me. 
Title: Re: Insomnia My Old Friend
Post by: mindytyson3 on January 15, 2013, 05:10:21 PM
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.
Title: Re: Insomnia My Old Friend
Post by: stillinshockwithsjogrens on January 16, 2013, 01:51:01 AM
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!
Title: Re: Insomnia My Old Friend
Post by: MaryBee7 on January 16, 2013, 02:35:48 AM
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. 
Title: Re: Insomnia My Old Friend
Post by: stillinshockwithsjogrens on January 17, 2013, 11:07:01 AM
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.  :P
Title: Re: Insomnia My Old Friend
Post by: Saundra on January 17, 2013, 12:52:44 PM
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
Title: Re: Insomnia My Old Friend
Post by: brooklyntina on January 18, 2013, 07:13:36 AM
I'm waking up every night now with a pounding heart. Last night it got up to 140. I can't take it anymore.
Title: Re: Insomnia My Old Friend
Post by: Tinker on January 18, 2013, 08:15:22 AM
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?
Title: Re: Insomnia My Old Friend
Post by: brooklyntina on January 18, 2013, 10:02:39 PM
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.
Title: Re: Insomnia My Old Friend
Post by: season on January 18, 2013, 10:32:54 PM
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.
Title: Re: Insomnia My Old Friend
Post by: brooklyntina on January 18, 2013, 11:21:57 PM
Thank you. This is nothing new but way worse than usual. Makes me feel a bit less scared.
Title: Re: Insomnia My Old Friend
Post by: stillinshockwithsjogrens on January 19, 2013, 01:41:17 PM
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. 
Title: Re: Insomnia My Old Friend
Post by: brooklyntina on January 19, 2013, 02:33:33 PM
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.
Title: Re: Insomnia My Old Friend
Post by: Tinker on January 19, 2013, 06:44:54 PM
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. 
Title: Re: Insomnia My Old Friend
Post by: BonusMom on January 20, 2013, 06:09:29 AM
I was dx'ed with Hypersomnia in '98 and take Adderall to stay awake, otherwise, I'd be sleeping every two hours. I also have restless legs.

I stopped taking Klonopin for RLS in 2010 as it was making me really tired the next day and I had difficulty waking for work.

Since mid 2011, I have had difficulty getting a good night's sleep. I wake up after 4 hours, stay awake an hour and go back to sleep. I rarely feel refreshed upon wakening.

I don't know if my sleep difficulties are due to untreated RLS, peri-menopause or what???

I can tell you that my thought process and memory have been negatively impacted by my lack of sleep.
Title: Re: Insomnia My Old Friend
Post by: Tknapp717 on January 20, 2013, 09:46:33 PM
I also have a issue with insomnia, I find it to be worse in the summer months when its really hot/dry out. I am in Arizona so its always dry but more so in the summer. In the winter I sleep better if the house is cold but then I wake up stiff. My doctor recommends benadryl because it doesnt make you drowsy. She prescribed ambien but I am already a sleep walker so I am to scared to take it.

I find that when I cannot sleep, I picture a object, usually an apple and try and focus on it. All the details, groves and different hues in the colors. The longer I try to focus the easier it becomes to see it clearly and by that time I'm usually in a dream because I have fallen asleep.

It works for me, maybe give it a try. Hope that helps!
Title: Re: Insomnia My Old Friend
Post by: crmak on January 21, 2013, 04:08:15 PM
I've had insomnia for many, many years..but then I've had Sjogrens for a long time too, although i just got diagnosed about a year and a half ago. But then, I was diagnosed with PTSD many years ago, too, compounding the problem.
I have found the perfect solution that works for me. I take one 100mg Trazadone tablet and one 5mg Melatonin tab. Works about 90% of the time for me.
 :)
Title: Re: Insomnia My Old Friend
Post by: SonicEm on January 22, 2013, 12:08:25 PM
brooklynTina - the heart racing is very scary! What meds are you taking? If you can, try not taking them for a day/night and see what happens.

Tknapp - thanks for the visual imagery exercise - an apple is just so amazing! I'll try that and see what happens.

Sorry I can't comment to everyone as I'm still dealing with sleeping OK for 3-4 hours then waking up and not getting back to sleep. Although since I started on Synthroid for hypothyroid, I had 2 nights where I actually DID fall back asleep!!! One of those nights was the best I've slept in weeks, months. I felt so good the next day. It was short-lived as the next night I was back to sleeping only 4 hours.

I will see a different doc today - naturopathic. She will try to balance my hormones and let's wish me all good luck with that! I hope this helps with the sleep.

Thanks to all for your support and ideas! Wishing you all sleep tonight.
Title: Re: Insomnia My Old Friend
Post by: crmak on January 22, 2013, 01:52:30 PM
I've read the rest of this thread and have noticed comments on Melatonin giving bad dreams. Really? I am known for years in my family for my awful, heavy, sad or nightmarish dreams. I've taken Melatonin for years. I wonder now if that's my problem. I'm going to stop taking it starting tonight to see if my awful dreams stop.
Wish me luck! I'd LOVE to be bad dream free for a change. Thanks for the tip. I hope this works!
Title: Re: Insomnia My Old Friend
Post by: Saundra on January 22, 2013, 04:19:00 PM
good luck crmak, may you have restful uneventful dreams tonight!

XOXO
Ldy
Title: Re: Insomnia My Old Friend
Post by: SonicEm on January 23, 2013, 09:41:25 AM
crmax - good idea to just stop taking the mel and see what happens! Who knows?

The naturopathic doc I saw yesterday has put me on 2 food restrictive diets - no dairy and no nightshade veggies. Don't know if this will help the sleep issue but it's supposed to be anti-inflammatory.

She also has me doing a 24-hr urine sample - that is for hormone balancing which I won't get the results for 3 weeks. What to do until then?

Slept 4 hrs last night - if only I could conquer this insomnia! I feel so much better with sleep. This is SO debilitating!

Off to take a nap soon. Sigh.
Title: Re: Insomnia My Old Friend
Post by: BonusMom on January 23, 2013, 11:02:42 PM
My gyno, who is an osteopath, suggested I take Unisom due to it's non-addictive properties. I was surprised that she didn't mention Melatonin (which hasn't worked for me).

I haven't noticed an appreciable difference with the Unisom-yet.
Title: Re: Insomnia My Old Friend
Post by: stillinshockwithsjogrens on January 24, 2013, 01:03:17 AM
My gyno, who is an osteopath, suggested I take Unisom due to it's non-addictive properties. I was surprised that she didn't mention Melatonin (which hasn't worked for me).

I haven't noticed an appreciable difference with the Unisom-yet.

Unisom is an antihistamine, which is why it's supposed to make you sleepy.  It also makes you dry, which is why my Rheumy nixed it for me.
Title: Re: Insomnia My Old Friend
Post by: Myshkin on January 24, 2013, 01:17:09 AM
My gyno, who is an osteopath, suggested I take Unisom due to it's non-addictive properties. I was surprised that she didn't mention Melatonin (which hasn't worked for me).

I haven't noticed an appreciable difference with the Unisom-yet.

Unisom is an antihistamine, which is why it's supposed to make you sleepy.  It also makes you dry, which is why my Rheumy nixed it for me.

Og yes, big NO to Unisom. I took that stuff on my own before my diagnose. BIG mistake - have never been so dry in my life. My doctors have since forbid me any antihistamines at all. That's a big no-no on Sjogrens. Makes you drier than Sahara.

I'd take the addiction anyday over antihistamines. Since stopping Benadryl I have been able to cry on my right eye again
Title: Re: Insomnia My Old Friend
Post by: BonusMom on January 24, 2013, 04:24:40 AM
Well crud!  I didn't look at the stinkin' ingredients, just blindly bought the generic and took it. How stupid of me!

If o had known that, I could have saved my money and continued taking Nyquil, which wasn't as drying.

Yesterday was particularly bad for dryness and I DID take a Unisom the night prior.

And here I suspected it was Black Cohash or
Centrum Silver causing my issues......looks like they've made their way back onto the pill box :-)

Thanks so much for the feedback!
Title: Re: Insomnia My Old Friend
Post by: Tinker on January 24, 2013, 07:28:44 AM
Hi girls,
I know there are a lot of replies to read but I posted one about NOT taking melatonin.  Dr. Oz did a big show on this and brought in MD's who specialize in this and presented their findings.

For more info: visit Dr. Oz's site and find the melatonin info.  Just want to help.

Title: Re: Insomnia My Old Friend
Post by: Tinker on January 24, 2013, 07:36:06 AM
Another helpsie I've found (and it's sanctioned by my neurologist:

If I'm still awake at 2 or 3 ,or 4, I can take 12.5 mg. of phenergan.  If I take a whole , I get Restless leg, and we all know how much fun that is. Phenergan is also a stronger antihistamine, but it doesn't dry me much.n

Watch out for phenergan.  I had relentless vomiting after surgery once and they kept giving me ddrug after drug.  Finallly, some nit-wit gave me phenergan by IV, and I lost consciousness.  Was out cold and had a pulse-0x of 56.  woke my husband up and he called the nurses or I'd be dead.  They gave me Nar-can and I woke up.  It scared me to death and I always tell staff NOT to give me phenergan IV.  I can take this by mouth with no problems.  It was a combo of all the other drugs previously given that almost killled me.
Title: Re: Insomnia My Old Friend
Post by: SonicEm on January 24, 2013, 10:07:54 AM
Hi girls,
I know there are a lot of replies to read but I posted one about NOT taking melatonin.  Dr. Oz did a big show on this and brought in MD's who specialize in this and presented their findings.

For more info: visit Dr. Oz's site and find the melatonin info.  Just want to help.

Tinker - Yes, the Dr. Oz article is here:
http://www.doctoroz.com/videos/fact-sheet-melatonin

Interesting that he says too much melatonin may cause you to wake up in the middle of the night! I am going to stop taking this and see what happens. Thanks Tinker!

Most of the OTC stuff I've tried stopped working - next is just plain old valerian, not a mix. Anything else?

As far as Rx meds for sleep, Ambien stopped working for me, Trazadone never did. Any other alternatives out there?

I'm back to the sleeping 4 hrs then waking up schedule. I took a 3 hour nap yesterday and it seems to be helping to make up the sleep deficit. Don't know what else to do at this point!
Title: Re: Insomnia My Old Friend
Post by: anabanana on January 24, 2013, 10:39:40 AM
I have read that anyone with autoimmune disease should not take melatonin...which is too bad, somewhat helps me...
Can anyone confirm this or otherwise, it is contraindicated for autoimmune disease on labels?

I began drinking tart cherry juice (mixed from concentrate) after watching dr oz, so far not much, though I've had problems for ages, mostly from stress due to lack of diagnosis and life not progressing as it normally should...But it's only been 4 days, so we'll see...I have had weird, crazy dreams drinking the juice though, so something is happening...

I would try tart cherry pills, cost effective and supposedly safe...I am going to try the brand Solgar, as it has a good reputation for quality and tart cherry has natural melatonin, which is supposedly not contraindicated for autoimmune disease in this form...
Title: Re: Insomnia My Old Friend
Post by: Debbie B on February 14, 2013, 09:53:08 AM
I think the first poster said she was taking estrogen...are you taking progesterone to balance that? You really need to. Estrogen makes your heart race and progesterone calms you down and helps you sleep. And Brooklyn tina...maybe you could try progestetone cream. I only use progesterone cream last half of cycle after ovulation. It balances the estrogen and helps me sleep. I have noticed a big difference. I don't take estrogen at all. Get it froma  compounding pharmacy in Canada or you can buy it online in the US. I use Allvia Progensa cream 1 pump which is 20 mgs from days 14-26. I think it has helped eyes too. I find that during ovulation or high estrogen time, my eyes are the worst. Estrogen is inflammatory and progesterone is anti inflammatory.
Title: Re: Insomnia My Old Friend
Post by: SonicEm on February 14, 2013, 06:13:44 PM
Just an update to those interested:

I actually did end up taking a course of Progesterone - way back in Jan 22-24, just 3 times. It did the trick! I've been sleeping well ever since.

I really don't know why I started sleeping again! I am seeing a naturopathic doc who did a urine test for all my hormones. We will attempt to balance them! Hoping for the best. I also am going to try a different kind of progesterone - a cream. And also the timing - will need to tweak that. But my health is greatly improved!!!
Title: Re: Insomnia My Old Friend
Post by: anabanana on March 19, 2013, 11:31:44 AM
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.

Wow, I thought it was just me being anxious about the mucinex, it made my heart pound, like an anxiety attack I've never ever had in my life,  wonder why...good to know I am not the only one...
Title: Re: Insomnia My Old Friend
Post by: SonicEm on May 28, 2013, 12:59:40 PM
So just an update  - I've been off most HRT including progesterone for a month now. Just tapering off the estrogen (down to .05 from .075). I'm also off Synthroid as an experiment with my Endo's blessings. I'm in a transition for sure as one day to the next my symptoms are different. Yesterday I had bad brain fog, today better. I've gained 3 lbs. and am feeling more sluggish - most likely the thyroid.

And insomnia? I've been sleeping mostly well for the past few weeks after having severe insomnia for at least 2 months. Again, don't know why. Before I always slept better AFTER I took the progesterone and then stopped it. For March and April I was taking progesterone orally every day, along with the full complement of HRT (DHEA, testosterone, progesterone and estrogen). That's when the heart pounding started and it hasn't let up until the past week or so. My cardio doc can't find anything physically wrong. So he wants me to try getting off the HRT and see what that does. At least I'm off the Propanalol.

Our bodies are just so complicated! It's always something.

Thanks for all your good feedback!
Title: Re: Insomnia My Old Friend
Post by: anabanana on May 28, 2013, 03:30:31 PM
Sonic,
I am about to do the progesterone cream, I am day 14 today. I put it off for a while, but I want to see if it helps my sleep and other issues. Its worth a try...hormone imbalances can get so many things off balance, it just so complex...will report after 14 days if it helps. The trazodone has been mixed so far, so hoping something else will work better...