# Ok, a weird symptom. Is it related?



## Desertrose

For the last at least year and a half I've been experiencing something very odd - and it's not all the time, comes and goes but it's reaching disturbing heights now.

As I fall asleep, you know, when you reach that inbetween state - that twilight zone between wakefulness and sleep....
The minute I slip "there" I get this fluttering, vibrating sensation that feels like all my nerves are firing off and trembling frantically.
It is mainly in my extremities...hands, feet, but also NOW it's crept into my chest, my face.....
It wakes me with a start. A jolt, but even when I am awake, fully, it continues for minutes after.
The first time it happened I thought the whole bed was shaking, then I realised it was me.
I'm not visably shaking though. It's all inside.
It happens numerous times every night. I literally take at least two hours to fall asleep every night. Last night I was still awake at 3.30 am. As a result my sleeping patterns are horrendous.

Now this feeling is growing. Along with it I get almost like an adrenaline rush feeling in the pit of my stomach/chest and also a strange taste in the back of my mouth/throat that I can't even explain.

It's NOT like a panic attack though. I have told a few doctors about it and they say "Oh it's nocturnal panic attacks".
I don't know.....it doesn't feel like that.
My heart is not actually racing. I thought it was at first.....all that fluttering going on, but my heart is actually fine, normal heart rate - it's more like all the nerves are fluttering which kind of does feel like a racing pulse inside my body.
But now, this sensation IS actually causing me anxiety,
I dread falling asleep and I get so frustrated because I am dead tired and yet my body seems to be torturing me!
I have even moved out of our bedroom into the spare room (which just feels so wrong. I'd like to fall sleep next to my husband!) because my husbands snoring is driving me insane and along with all my fluttering, well....it's a major feat these days to fall asleep!

Has anyone experienced this?
Any ideas?
I take magnesium before bed but it makes no difference.
I've tried chamomile tea before bed....no difference.
In desperation I've even had a glass or two of wine. Nothing.
I don't want to go there anyway, but I reckon sleeping tablets wouldn't make any difference either.
It's like falling asleep is waking me UP.


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## hashimotocoaster

Sounds like a hypnic jerk. Happens to me too, but it's nothing to worry about. http://en.wikipedia.org/wiki/Hypnic_jerk

Also:


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## Desertrose

No, it's definitely not that but I know exactly what you mean and I experience the sudden jerks awake too sometimes, especially when dreaming of falling or slipping.

This 'fluttering" thing I feel can last for as long as it takes me to get out of bed and walk to the bathroom for a drink of water. I am fully conscious as it goes on then fades away.
I've got a suspicion that it might be somehow related to cortisol levels. It's like something SPIKES....something is being released and my body has a canniption.


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## StormFinch

I believe I would be asking for a sleep study, both for myself and the hubby. With all those sensors they should be able to pick up something and tell you what it is, not to mention help the hubby reduce his snoring. Maybe sleep labs give a two for one special?


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## hashimotocoaster

How are your labs? I had weird night-attacks when I was hyper. If it's not hypnic jerks, it's worth asking your doctor about.


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## Desertrose

Stormfinch, actually this coming Thursday hubby is going to pick up some sleep study device that he has to come home and wear for the night so they can work out what's going on with him. I should of thought of asking for a two for one. 

Hashi, my labs are all normal right now, so they say. This has been an ongoing thing for quite some time - it's not really gone away for a long period of time but may not happen every single night.


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## Velcro

Hey Desertrose. Have you looked at Peripheral Neuropathy? One of the symptoms listed with it is the "vibrating" feeling and it's also associated with hypothyroidism.


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## Desertrose

No, I haven't. I'll have to look into it, thanks! More googling in store I think


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## Danniswirl

You need your adrensls checke! Your having adrenaline surges. It is known to wake you ip at night and can make you feel very anxious. Thyroid disorders and adrenal fatigue go hand in hand, especially if you were untreated for awhile


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## Desertrose

That's what I think it is. I've asked my doctor to test my cortisol levels. Just need to go get the blood test done.


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## Ginav

I had a feeling of what I called "my insides are vibrating" and no one knew what I was talking about and then I believe I read here somewhere on the board that it could be Metabolic seizures. I don't know if you are on meds but it seems that once I started Methamizole and the beta blocker it went away. Gina


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## Desertrose

I don't think it's any kind of "seizure" as such. I'm pretty sure it's an adrenaline thing. Whatever it is it's horrible and I'm really fed up with it. 
I've been on betaloc tablets before and it didn't make any difference unfortunately.


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## mouthy83

I really hope u are getting your adreanals looked at. I have addisons disease (adreanal fatigue). when i first started taking my replacement cortisol i was exactly like this... and if i take them too late in the day i also get like this. It definately sounds like u are producing too much cortisol rather than not enough... hopefully they will do a stimulation test to check.


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## Desertrose

Yes, that's my suspicion exactly. I feel totally super wired at NIGHT as well. For the past two weeks I've still been awake at 4 or 5 am. I've read that usually cortisol levels are low at night (to help your body fall asleep) and high in the morning. 
Something in me is at superspeed at night!


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## mouthy83

Ye your highest levels of cortisol is in the morning, its whats gives u that up and go feeling when you wake up.

I forgot to ask in the last post: do u get pain when u get a 'rush'? when i get a shock and get a shot of adrenalin my fingers and toes get a sharp stabbing pain, almost like an electric shock.


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## Desertrose

No, no pain as such...just this fluttering feeling like every nerve is twitching in my extremities and even my face and chest and it can continue for some time after I'm jolted awake (like minutes)
Somewhere in my chest, or stomach, below my ribs? I get a surge like when you get butterflies in your stomach on a fair ride. Sometimes I get a strange indescribable taste in my mouth too. It's just so bizarre that I feel crazy trying to describe it to doctors. I think they just look at me like I'm mad.


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## mouthy83

I know anxiety can cause a metallic taste.... And lets face it when ur body is playing funny buggers anyone will feel anxious. But I've also read that a bitter taste has been connected with adreanals.
Ever had ur pituatry gland checked?? That could be the cause rather than it be adrenal fatigue? It could be releasing the hormone ti stimulate the cortisol release. Sorry can't remember exact terms and words Im having a bad memory day, or perhaps its baby brain lol


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## Danniswirl

You should get bloodwork and the Saliva Cortisol Test done ( you will have to order the Saliva test on line because doctors and endo's usually don't do it). You need to see how your daily cortisol levels are. The Saliva Test 4 times in a day. You spit in a tube. Blood test will only confirm Addison not Adrenal Fatigue. I do not have Addison's but I do have Adrenal fatigue. Please research and google it.


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## Desertrose

I know. I have been thinking about this as I have read that the saliva test is the best way to go.
The thing is, it seems to me that most doctors don't even consider that adrenal fatigue is a real thing. (am I wrong in supposing this?)
If I order tests online....and it shows that something amiss, what good will that do when doctors don't even consider it to be anything important? 
I can imagine it would be poo pooed just as I've already had a doctor dismiss the idea that diet has anything to do with Hashimoto's and that leaky gut is just something I've been sucked into believing from reading too many "funny websites". (his exact words)

To be honest, all of this is new to me and I'm just trying to make sense of it all and apply for my own healths sake, what seems to be logical.

What exactly IS the treatment for adrenal fatigue?


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## mouthy83

Addisons is the autoimune version (if that makes sence??) and is treated with steroids... for life.

Adrenal fatigue im not sure if the treatment is something else or even different? Danniswirl will know more... and id be interested to see the difference if n e too. I was under the impression it was the same sort of thing but caused from different things. Think i need to do more reading LOL


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## Desertrose

Well I just went today to have the blood tests done. Can't believe the doctor forgot to put all the thyroid levels down! Anyway....there were other things to be checked, like cortisol but I really doubt anything is going to show up.
I've suddenly switched - something is happening and I'm super tired, feeling like I just HAVE to have a nap come 3 or 4 pm and last night I fell into bed and took only minutes to fall asleep....none of this superwired feeling and no funny trembly fluttery feeling either.
I suspect that something thyroid wise is going on now and I'm crashing energy wise.
So....perhaps all of this weird stuff has something to do with thyroid levels? Who knows.


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## Danniswirl

I'm so sorry you are experiencing this trouble. I like yourself have been going through difficulties as well. Yes, doctors don't treat your adrenals unless it shows up as Addison's Disease or Cushings Disease. But Adrenal fatigue does exist!!! It can be one of the main reason ones thyroid meds aren't working along with low ferritin, low vitamin D, Rt3 resistance and low aldosterone. You will have to look into finding a Dr.or NP that is familiar with this. You must must must do your research now in order to educate yourself. If you have been treated for years your thyroid can play havoc on your whole endocrine system. It will make you feel like your oing crazy. And the doctors will convince you because nothing shows up on your bloodwork. After many many ER visits I took control over my health. I prayed and prayed to my Heavenly Father to help me. If I can mention a web site that would help you out. It's StopTheThyroidMadness.com. Read everything you can, and there is also a adrenal group that is awesome that you will find while on the website. Most Endo's will not help you. Fight for your health! I hope this helps you.


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## Desertrose

Thanks, yes I have read some articles on Stopthethyroidmadness , and many others. I'm aware that adrenal fatigue can be something which makes Hashi's hard to manage. Trying to convince doctors is another story altogether. 
I think it's such a complicated disease because so MANY hormones and factors are involved.
I'm trying, slowly and methodically to try and work out just what's going on with me.
Right now I definitely feel a bit hypo...whether or not this will show up when I get bloods taken I don't know. Frustrating since daily levels can change.
I just found out too that the current doctor I'm seeing is likely to be placed elsewhere....so I'll have to find yet ANOTHER doctor.


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## Prolixity2013

Try taking magnesium and calcium before you go to bed. I take quite a bit of magnesium a day due to an atrial fibrillation condition. I split it half and half, taken twice a day. Though this won't work if you take your thyroid med at night.

Magnesium is used by the nerves, muscles, and heart. If you're low in magnesium it can cause all kinds of strange symptoms. Magnesium is another mineral with which thyroid disease sufferers have trouble maintaining normal levels.

Through much research, something I enjoy doing, I discovered one type of magnesium which does not cause loose stools when taken in higher doses. It is magnesium glycinate, a chelated version. Sometimes I have to take 1000 mg a day which is quite a bit since the normal recommended amount is 400 mg. For me, 600 mg in divided doses keeps my atrial fibrillation at bay. I found one which has small capsules too. Kirkman Labs. No affiliation. I just like the itty bitty capsules!


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## Desertrose

Thank you! I missed this as I've been away traveling.

I do take magnesium and it does seem to help a bit for me with calming my system down, a little bit anyway. I take it for restless leg syndrome.

Well....all that funny shaky/trembling business for the most part has passed now and I am sleeping a LOT better I'm happy to say.

There seems to be no rhyme or reason for it......obviously something was out of whack, and now it isn't.

Wish I could get to the bottom of it!


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## Danniswirl

I'm so sorry I did not know you were waiting for a response. Desertrose I know how you feel. It is very frustrating to now more than your doctor about your illness. Adrenal fatigue is different than Addison because with Adrenal fatigue you may be able to slowly wean off treatment when thyroid is optimized. Treatment will support adrenals. It may be in the form of supplements, over the counter cortex, or even hydrocortisone (steroid) if your levels are low enough. There is a forum that has really helped me and many others. It is a yahoo adrenals group forum. If you google it you will be able to find it. I wish you success and health on this journey.


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