New kind of fatigue for me...

[soxfan]

So the past week has been a total nightmare for me. It started out with night long vibrations in my chest with pounding heart. It made sleeping basically impossible. That has finally resolved for now but in its place is another problem I haven't ever experienced.

I am fine when I first get up but within 1-2 hours I start feeling extremely drowsy and sleepy. It feels as though I have taken a sleeping pill and am being forced to stay awake. I have had it 3 times in the past 5 days and all I want to do is lay down and close my eyes.

It also feels as though my eyes are burning like I didn't get enough sleep. The strange thing is I have slept very well the past few nights since the adrenaline surging has gone away.
Is this just another type of fatigue that come with this disease or is something else going on?

I have not changed my sleep meds or any other supplement recently...Anyone have any thoughts on this. I really have to just go and lay down since I can't get anything accomplished...ugh....

 

[Valentijn]

Does it go away if you lay down? Immediately or after a while?

 

[soxfan]

Yes...the drowsy feeling fatigue does go away after I lay down but I still feel tired when I get back up...it is very difficult for me to just rest and relax as my body doesn't allow me too...it always feels like it is in "flight" mode.

 

[Valentijn]

Yes...the drowsy feeling fatigue does go away after I lay down but I still feel tired when I get back up...it is very difficult for me to just rest and relax as my body doesn't allow me too...it always feels like it is in "flight" mode.

Really sounds like the "fatigue" is orthostatic intolerance. Can check heart rate or blood pressure (and pay attention to pulse pressure too), to see what type.

 

[soxfan]

I have a watch that tells my heart rate and also have a finger pulse thing and my heart rate almost never goes over 68. I have a pretty slow rate...last year had the tilt test and wore a holter monitor for 24 hours. My average rate was 66 with a couple spikes into the 100's. The drowsiness is really intense...have never experienced this ever.....this is so discouraging to deal with...as if we don't have enough.

 

[Mattman1]

It could be the disease-- but the mention of feeling adrenaline and a different sensation of the fatigue itself makes me wonder if it could be related to any meds or supplements you are on, even if you haven't changed any of them. Our body after time can grow accustomed to them, causing changes in symptoms.

 

[Seven7]

I get this. I think is OI but when I get this it goes on for a few days, doesnt matter what I do i just have to ride it out. Is very bad symptom, I feel like when your foot fall sleep when you haven't move it in a while but in my brain. Gets very numb and is like I cant even think, all I need is to sleep. LDN made it worse (when I go up on it).

 

[PNR2008]

I know this feeling and it usually is aroung the weather change. Right now it's balmy and warmish but I feel like every cell in my body has popped. The fatigue is so bad, walking in the house is a chore. I think we sleep well at nite because the body is using alot of energy to acclimate and the heebie jeebie's in my legs and arms are maybe the cytocines racing around. Who knows what causes it but it can be brutal.

 

[sianrecovery]

Reminds me of when I first became acutely ill, the few weeks afterwards - and in that case, I had had gastric flu and got a river bug, and my adrenals were crashed, crashed, crashed. You symptoms remind me a bit of that total adrenal exhaustion.

 

[soxfan]

I am wondering if I should up the Cortef. I take 2.5mg in the morning but maybe I need more at the moment. It is brutal and the other strange thing is I had it on Saturday but not yesterday and now it is back today. I haven't done a thing different. I just laid down for an hour and my body felt like it was pumping the adrenaline again. I still feel horribly drowsy. I knew that adrenal exhaustion could cause fatigue but this drowsiness is a new one for me.

Also wondering if anyone has experience with Rhodiola? I just received it in the mail and am afraid to take one considering how bad I am feeling.

I wanted to add that I don't feel physically tired...just sleepiness.

 

[taniaaust1]

Sounds like you have one of the symptoms I commonly get with this illness.. that being the hypersomnia one but it sounds as if it isnt coming in strong yet (sounds like you have a minor touch of it) but it causes sleepy tiredness and not necessarily physical tiredness. (I can have that symptom without being physically tired). When it hits hard. all one can do is go to bed and sleep no matter what time it is. One NEEDS to sleep.

I used to sleep over 23 hrs per day due to that "sleepy" symptom. If its very bad and one tries to fight it.. you just fall asleep while actually physically doing things (ive fallen asleep with my head on the sink while trying to do dishes). I hope the symptom doesnt go and get worst for you.

best wishes
Take care over exertion can bring this symptom worst but ive also found it can just happen too if Im going throu like a stage of this illness.

 

[soxfan]

The problem is I CAN'T sleep even when I feel like this. I feel as though I could sleep for a year but the minute I lay down my body goes into overdrive mode and my heart will pound and I will feel the surging even while being extremely sleepy. I gave in and laid down for almost 3 hours yesterday but it was pointless and I just lay there in total distress.

When I finally got up I felt even worse...the drowsiness was gone but I was extremely tired. Went to bed my usual time and slept great but now this morning I am feeling very worn out....

 

[taniaaust1]

soxan have you had your adrenaline and noradrenaline levels checked? I wonder if they are abnormally high.. if so taking something to help lower it can help.

 

[soxfan]

Last time they were checked was over 2 years ago and at the time they were normal. I feel different now then I did back then though. I am seeing my doctor on Thursday and will talk about this with him. I bought some rhodolia but haven't taken any yet.i feel as though there is a motor running in my chest all the time with my heart pounding...

I wanted to add that my serotonin level was really low 2 years ago...
These were my results in January of 2011

7am cortisol 3.1 (7.0-10.0)
12pm cortisol 1.3 (3.0-6.0)
5pm cortisol 1.3 (2.0-4.0)
10pm cortisol 1.4 (less than 1.5)

My Norepinephrine was 30.4 (30-45)
Dopamine 152.6 (115-175)
Epinephrine 6.8 (7-12)
Serotonin 76.9 (120-185)

Maybe it is time to have this done again.....I don't think adrenaline was done...unless there is another name for it.

 

[Valentijn]

My Norepinephrine was 30.4 (30-45)
Dopamine 152.6 (115-175)
Epinephrine 6.8 (7-12)
Serotonin 76.9 (120-185)

Adrenaline = epinephrine, and noradrenaline = norepinephrine. Just different words for the same thing.

Your results seem similar to mine, though my epinephrine was in the normal range. And despite low serotonin, I can't tolerate SSRIs or anything else affecting serotonin. My norepinephrine was also near where yours is the first time it was tested, then had dropped a lot more about 9 months later. Treating with an NRI (strattera), has made a huge difference in my OI and cognitive symptoms.

Definitely get those tested again!

 

[soxfan]

Will talk to the doctor about it today...the testing is really expensive though and my insurance doesn't cover it...so not sure what I will do.

Just got back from the doctor. He is repeating all the saliva cortisol tests and the urine neurotransmitters. He wants me to do the urine testing when I wake up with the "adrenaline" pumping at night. He is also testing my melatonin level since he said last time it was extremely low. Maybe that is why I never feel sleepy when I get into bed...