Author Topic: Insomnia My Old Friend  (Read 19542 times)

SonicEm

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Insomnia My Old Friend
« 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.

MaryBee7

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Re: Insomnia My Old Friend
« Reply #1 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!

odie

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Re: Insomnia My Old Friend
« Reply #2 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.

SonicEm

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Re: Insomnia My Old Friend
« Reply #3 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.

stillinshockwithsjogrens

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Re: Insomnia My Old Friend
« Reply #4 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!

MaryBee7

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Re: Insomnia My Old Friend
« Reply #5 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? 

SonicEm

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Re: Insomnia My Old Friend
« Reply #6 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.
« Last Edit: January 07, 2013, 12:28:14 PM by SonicEm »

reesatay

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Re: Insomnia My Old Friend
« Reply #7 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.

MaryBee7

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Re: Insomnia My Old Friend
« Reply #8 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   ::)

odie

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Re: Insomnia My Old Friend
« Reply #9 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.


brooklyntina

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Re: Insomnia My Old Friend
« Reply #10 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...

brooklyntina

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Re: Insomnia My Old Friend
« Reply #11 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.

SonicEm

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Re: Insomnia My Old Friend
« Reply #12 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.

MaryBee7

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Re: Insomnia My Old Friend
« Reply #13 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. 

cargillwitch

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Re: Insomnia My Old Friend
« Reply #14 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!
47 female, Sjogrens ,Raynauds,degenerative disc disease.Rheumatoid Arthritis, gastroparesis.