Author Topic: Insomnia My Old Friend  (Read 19096 times)

SonicEm

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Re: Insomnia My Old Friend
« Reply #15 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...

SonicEm

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Re: Insomnia My Old Friend
« Reply #16 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.

MaryBee7

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Re: Insomnia My Old Friend
« Reply #17 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. 

cargillwitch

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Re: Insomnia My Old Friend
« Reply #18 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!
47 female, Sjogrens ,Raynauds,degenerative disc disease.Rheumatoid Arthritis, gastroparesis.

SonicEm

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Re: Insomnia My Old Friend
« Reply #19 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!

MaryBee7

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Re: Insomnia My Old Friend
« Reply #20 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!

THE BRIT

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Re: Insomnia My Old Friend
« Reply #21 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.

SonicEm

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Re: Insomnia My Old Friend
« Reply #22 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.

Myshkin

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Re: Insomnia My Old Friend
« Reply #23 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.
Newly diagnosed i 2012 with Sjogren's and feeling like crap. Just started Plaquenil and try to learn to live with the new me. Also joined by temporal lope epilepsy, auramigraines and PCO.

Tinker

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Re: Insomnia My Old Friend
« Reply #24 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. 

Myshkin

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Re: Insomnia My Old Friend
« Reply #25 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???
Newly diagnosed i 2012 with Sjogren's and feeling like crap. Just started Plaquenil and try to learn to live with the new me. Also joined by temporal lope epilepsy, auramigraines and PCO.

Myshkin

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Re: Insomnia My Old Friend
« Reply #26 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...)
Newly diagnosed i 2012 with Sjogren's and feeling like crap. Just started Plaquenil and try to learn to live with the new me. Also joined by temporal lope epilepsy, auramigraines and PCO.

Tinker

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Re: Insomnia My Old Friend
« Reply #27 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.

Myshkin

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Re: Insomnia My Old Friend
« Reply #28 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.
Newly diagnosed i 2012 with Sjogren's and feeling like crap. Just started Plaquenil and try to learn to live with the new me. Also joined by temporal lope epilepsy, auramigraines and PCO.

mindytyson3

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Re: Insomnia My Old Friend
« Reply #29 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.  :)