posted
Getting desperate for a good night's sleep. It has been so long since I had one.
Seem to have gone into a different phase, with the problem now being adrenaline kicking in about now, along with tachycardia and dry mouth. This wakes me up, and I am insomniac afterwards. Is this adrenal fatigue?
Went to doc the other day to ask if I could try a change in thyroid meds and maybe a low dose of cortisol. He is letting me do this, but I was not sure what to ask, what is safe to prescribe. Don't want to get him in trouble; these days it is hard to know how to do this and get the help that is needed. Wondered if I should go to a "holistic" doc instead for things that are lyme related but not only lyme, so that someone could treat adrenal fatigue without knowing anything about lyme. Spread the risk, in other words, and help protect my doc.
He also gave me an Rx for sleep med, but not sure this will fix it as I can fall asleep unaided, just can't stay asleep thru the heart pounding, etc.
Geez, I am so tired of having to figure out these things. We really need the specialists, like endocrinologists for instance, to help back up our docs. That is a heavy load to carry by themselves. Will a change in the healthcare system improve lyme care, I wonder?
Posts: 8430 | From Not available | Registered: Oct 2000
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Have you tried beta blockers for the heart symptoms? Theoretically they may also be able to help out with all kinds of things, maybe even insomnia. I used to take mine before bed, I think.
Of course, they could maybe give you energy, in which case you would take them in the AM. But then I doubt the anti-tachycardia affects would last until the night time.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Yes, I have been on a beta blocker for several years, just upped the dose. I really am beginning to think there is such a thing as adrenal fatigue. Had a cortisol test done a couple years ago; it showed way too high level in morning, normal the rest of the day. The interpretation of these results is that it was the first stage of adrenal fatigue.
Am hoping the cortef will help. Just started it.
But the more you look into this stuff, the more complicated it gets. Do I need iodine too, to make my thyroid work right? Why do I have to research all this myself and try to figure it out? It is like having a dog and barking myself. Has mainstream medicine always been so backward about "new" diseases? Seems like there are any number of medical conditions where a few docs have figured it out, but all the others just keep doing nothing or the wrong things.
Posts: 8430 | From Not available | Registered: Oct 2000
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Yes, going into hormones can just be a whole huge complicated ordeal. I am hoping whatever hormonal issues I have will heal themselves after I finish addressing more TBD's.
But if I still have insomnia after I'm done treating TBD's, I may go that route. Maybe I would try an endocrinologist first, and if they don't seem to agree that there is anything wrong with me, perhaps I would consider an ND.
Either way, good luck! I'm sure it's complicated. I'm sorry you need to research it yourself.
Posts: 4590 | From Midwest | Registered: Jun 2008
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My doctor gave me an herbal pill called "Deep Sleep." I don't remember the brand.
It worked brilliantly! Good luck.
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Oh lou... you said... and it is so true...
"Geez, I am so tired of having to figure out these things. We really need the specialists, like endocrinologists for instance, to help back up our docs. That is a heavy load to carry by themselves. Will a change in the healthcare system improve lyme care, I wonder?
So sorry you are having to deal with this... still! I am right with you on having to figure it all out yourself. UGGGG!!!! Like you said... it is like having a dog and having to do the barking yourself. You hit the nail on the head.
I am in the same spot it appears as you are right now on this topic.. hence the shaing of what I am finding online for others.
I understand Dr. J. Sp has a good book- small but good- that is right on the money in some folks opinions. I don't have a copy but at the other site you might ask about it? After that book, leave the other advise alone.
I had iodine in a 2 inch square on my forearm the other day. Will it work? I don't know.
Am starting back on thyroid meds too, possibly? Was concerned about cortisol ... so anxious to know what you think.
From that post I made the other day... I had about 90 percent adrenal and 10 percent thyroid symptoms.
I also don't know what/where to go or do? It is sooo tiring.
As for sleep. I have sometimes changed meds around and supplements.
If I take calcium in the day time it makes me sleepy- for example.
If I take vitamins at night I have a hard time sleeping.
If I don't move around as much in the day time, I don't get near as much sleep at night.
Caffeine will bring out the heart thumps for me.
I know these are little things but sometimes I have to regroup and see if I switched stuff not thinking... and caused the problem myself.
As I learn stuff I will post about it. I hope you do the same.
Till then, good luck!!!
PS. Melatonin- TIME RELEASED only- 3 mg tablets. Brand name... ug... I forgot!
White bottles, blue writing and labels. If I remember I'll share.
Since it is hormone problems... we think... and melatonin is a hormone.. might this help keep you stay asleep? It has worked for me in the past. But it MUST be time released only.
You know what. Just thought of this..
Since the iodine patch the other day... I've been sleeping LONGER hours at night.. for me anyhow. Normal for me is no more than 5 hours. I've been sleeping 7-8 hours now.
Could the iodine have done it? I've not started any new meds or changed anything else... yet.
How done-
Iodine- you get it from the drug store I guess?
A 2 X 2 inch area rubbed with a Q-tip on the inner forearm, if you are interested. Needs to stay on for about 4 hours I was told.
posted
Yes, that was the reason I posted. Figured it has got to be a problem for other people too. But are they having insomnia plain and simple, or is anyone getting this big adrenaline hit in the middle of the night? Insomnia could be caused by many things, but adrenaline rushes at inappropriate times seems pretty specific.
Will be trying the cortef and will post the results, if I can figure them out.
No amount of sleep aids are going to be effective if this hormone problem isn't solved.
I am taking time released melatonin, but have heard that this dose is too high. Who knows? I certainly don't.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
This happened to me last night too. Went to bed at 9PM and woke up at 12am. Couldn't go back to bed until 6am.
-------------------- I was diagnosed with and treated for late stage Lyme in 1991 with 6 weeks of doxycycline. Initially felt better, but then developed health problems that last until today. Posts: 83 | From New Jersey | Registered: May 2008
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Awww Lou, I'm sorry.
I used to have that problem. I would fall asleep just fine but then wake around two and not fall back asleep until around six. I was absolutely miserable.
Over time it just kinda went away. Now my problem is sleeping 14 hours a night and still being tired. I don't know which is worse...
I really hope the cortef helps. I know how miserable it is...
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
It doesn't sound like adrenal fatigue to me. Where would you be getting this burst of adrenalin at 4 AM if your adrenals were out of gas?
It sounds to me like it could be hormone disregulation or possible HYPOTHALAMIC-PITUITARY damage from lyme & Company. My night time awekenings resolved with proper Tx.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Lou,
I tried the cortef a long time ago and stopped taking it because I always felt worse.
Taking isocort now.
But, need to take the bitty pills before noon so it does not affect my self.
While I was still able to work but had strange symptoms (guessing it was lyme)
I would be up cleaning the house in the middle of the night and wondering why I had the adrenal rush at that hour.
Went to doctor's for the strange symptoms but didn't get any answers.
Sleep is still a problem for me even with sleeping pills
Going to start melatonin. I did hear that it is tricky trying to figure out what amount to take.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i haven't been able to sleep for months. I finally broke down and asked the llmd for something and he gave me Ambien.
Puts me right out and I sleep all night, but I do hate feeling like a zombie for the first couple of hours the next day. arrghhh, trade offs are witches...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I have a question for all of you - does anyone else notice that their sleep habits go through phases?
For instance, right now I'm in a phase where I rarely need an alarm and I wake up 4-5 hours after I go to bed (usually tired).
Before it was the opposite problem, I would sleep for 10 hours and absolutely need an alarm to have any hope of getting out of bed.
Sometimes I go through a phase where I absolutely need an evening nap and I end up not getting to bed until 2-3 am.
My body is so confusing. Who the hell knows.
-------------------- I was diagnosed with and treated for late stage Lyme in 1991 with 6 weeks of doxycycline. Initially felt better, but then developed health problems that last until today. Posts: 83 | From New Jersey | Registered: May 2008
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Ha! Yes to the phases...
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
Having insomnia right now.......went to bed at 11:45, still wide awake at 2:30....gonna try to go back now....Night Night...lol
Posts: 208 | From Hudson Valley, New York | Registered: Mar 2008
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posted
Randibear, I also have an Rx for ambien but have not filled it yet. Waiting to see what happens with the other things first. My previous experience with two sleeping meds was not good. Had the same problem you do with grogginess next day. Read a tip that you might try, take it earlier in the evening. Then it will wear off sooner in the morning. Worth a try?
We sure do need some lyme literate endocrinolgists. One other poster on this thread questioned whether cortef was the right solution to adrenaline rushes. I assumed that inappropriate hormone production was related to failing adrenals. Could be wrong. Also, I don't know what the heck you do about these pituitary problems, if they exist, or even how to detect them.
Posts: 8430 | From Not available | Registered: Oct 2000
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I remembered!
Source Naturals Melatonin- 3 mg tablets- MUST be TIME RELEASED.
We (friends) experimented with various kinds and brands and this one was much superior to others. MUCH better. No contest.
Good on pocket book. $8.00 - $10.00 a month at most.
(Can be ordered online from Vitmains4Less. Usually have a sale on it every other month or so.)
The "right" dose is different for everyone. I was told try 3 mg. and I could go UP to 5 mg. if needed Never needed to go that high.. very sensitive to meds.
The tablets easily snap in half between your thumbs. So a whole and 1/2 would be 4.5 mg.
I used 1/2 of a tablet.. and yes.. if I took it too late in the evening I would be slightly groggy in the morning. MUST be taken early enough.
If I noted being groggy.. I could cut dose till I stopped totally.
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