Suddenly sleep quality has become unbearably worse

[hamsterman]

@perchance dreamer ...The D hist was doing a great job with the fluid in my ears. I only take it when my ears start popping. Then I know I need it. I am going to give progesterone a try tonight. I am praying for a good nights sleep.[/QUOTE]

I'm getting that ears thing right now... I am not accustom to it. What typically causes this?

 

[hamsterman]

Update...My sleep quality is still off the charts terrible. I would take unrefreshing sleep anyday over waking up feeling exhausted. The only thing I have changed in the past month is my Thyroid. I switched from Levothyroxine to NP Thyroid and I wouldn’t think that would have made me feel worse.

I just started Pregenelone and DHEA due to my saliva hormone testing and I also have high night cortisol which I have known for years. .

I don’t think any of this would have caused the sudden change in how I feel in the morning since obviously my hormones have been screwed up for years.

Once again I seemingly slept great with one awaking but feeling tired and drained...

I dunno...

Just out of curiosity. Do you feel roughly the same in the pm as you did before you started getting your unrefreshed sleep?

Also... have you tried a short period of time where you basically hibernate for a few days?

Also... do you feel like you are in a mild PEM state over the last couple months?

 

[perchance dreamer]

@hamsterman, I've switched from progesterone drops in an instant release to 25 MG of a sustained-release capsule. A while back, I had tried 100 MG in this form, but I think it was just too high for me. The 25 MG is helping my sleep more than the drops.

 

[soxfan]

@hamsterman ...I feel the same in the pm...tired and wired. I feel like I am sleeping good but wake up incredibly tired and exhausted. I would take unrefreshing sleep anyway instead of this.

I can’t hibernate...I don’t sleep at all during the day and most of the time resting is impossible too. I feel wired or overstimulated all the time especially when laying down.

 

[hamsterman]

@hamsterman ...I feel the same in the pm...tired and wired. I feel like I am sleeping good but wake up incredibly tired and exhausted. I would take unrefreshing sleep anyway instead of this.

I can’t hibernate...I don’t sleep at all during the day and most of the time resting is impossible too. I feel wired or overstimulated all the time especially when laying down.

Have you tried LDN?

Hibernating was the wrong word. What I meant was... have you tried 3-4 consecutive days of extremely limited exertion? Basically barely moving (other than basic functions).

 

[soxfan]

@hamsterman ...I have tried days of limited exertion. In fact last week I was so crashed I spent two days entirely laying down ....I had zero energy and felt drained.

I have not tried LDN...I am seeing a functional medicine doctor and she has done some testing to figure out what is dysfunctional in my body and need to correct. It’s amazing what she had found out so far....

Since this new awful morning fatigue started I have been unable to do much even drive...so my activity has been very limited.

 

[hamsterman]

...I have tried days of limited exertion. In fact last week I was so crashed I spent two days entirely laying down ....I had zero energy and felt drained.

I have not tried LDN...I am seeing a functional medicine doctor and she has done some testing to figure out what is dysfunctional in my body and need to correct. It’s amazing what she had found out so far....

Since this new awful morning fatigue started I have been unable to do much even drive...so my activity has been very limited.

The sudden change for no reason doesn't seem like its directly related to ME. With ME, we can almost always point to what made things worse. I have heard of people's baseline suddenly going way down.... but there was usually an obvious trigger... like a severe period of stress/exertion/etc right before.

Make sure to see a endocrinologist as well. Hopefully this is something that can be corrected.[/QUOTE]

 

[kelly8]

Hi @soxfan ! So sorry to hear this is happening. You said you changed thyroid meds.... does this fit with the timeline of either the sleep or the weight loss?

I've been going opposite and gaining weight. Now 20 pounds heavier for no reason with tsh levels swinging up and down. If its not something it's something else isn't it?

 

[soxfan]

@kelly8 ...I did realize that the week before my sleep changed I had changed Thyroid meds...from Levothyroxine to NP Thyroid and I stopped Evista. I really don’t think the Thyroid meds could have kicked in that fast to make me feel this way.

I have switched back to Levothyroxine and my Functional Medicine doctor has done a lot of testing and found a bunch of stuff so I am doing a lot to correct my problems. I am hoping my sleep will get better. As I said I would rather be unrefreshed than fatigued in the morning...

 

[soxfan]

@hamsterman ...I think my CFS has gone up a notch in severity. I seem to be getting PEM with really minor exertion. It use to take me really going over my limits to feel this bad.

My endocrinologist is useless. She did the morning cortisol blood and ACTH test and my 8 am level was on the low end 8.2 (5-24) range.

I am seeing a functional medicine doctor who did the saliva and found my morning cortisol is low but night 10pm is high. We are working on that now.

I don’t feel as unrefreshed as I did but I feel more drained and fatigue when I get up. So I have no clue....

 

[hamsterman]

@hamsterman ...I think my CFS has gone up a notch in severity. I seem to be getting PEM with really minor exertion. It use to take me really going over my limits to feel this bad.

My endocrinologist is useless. She did the morning cortisol blood and ACTH test and my 8 am level was on the low end 8.2 (5-24) range.

I am seeing a functional medicine doctor who did the saliva and found my morning cortisol is low but night 10pm is high. We are working on that now.

I don’t feel as unrefreshed as I did but I feel more drained and fatigue when I get up. So I have no clue....

Sorry to hear that your CFS/ME has gone up a notch. If that is the case... I would suggest looking into pacing with a heart-rate monitor. There is a good facebook page on that. It helped me quite a bit. There are people who have been trapped in a state of perpetual rolling PEM for years and they followed the guidelines there... and have stabalized... and improved somewhat.

 

[perchance dreamer]

@soxfan, moving away from my endocrinologist and finding a good integrative P.A. helped me a lot. Hope you get great benefits, too.

 

[soxfan]

My sleep is much better now but not the fatigue....I get up in the morning and i relatively well for a couple hours and then I go down quickly. On top of it...now I am also having muscle fatigue in my arms and legs.

It more in my legs ...feeling like I ran a marathon but not sure...just very tired. I honestly have no clue what has happened but with this illness things can change suddenly.

It’s been a rough month and I can only hope I can get some good days scattered in...I would give anything to have my unrefreshing sleep back...

 

[kelly8]

@soxfan , I'm so sorry you are going through this. I know the endocrine Dr did a cortisol test. Was this a cort stim test? My functional med dr found that my values didn't double like they should have although they were in "range" according to the endocrine guy. I think it might have been you ( or maybe it was someone else. . Not sure) that had also almost passed out after a cort stim test?

He gave me hydrocortisone to take and it has helped immensely. I'm not fixed but I'm feeling about 65% of my former self and a lot of the neuro symptoms have subsided. Now we are working on the gut issues. I hope you are able to get some relief. .

 

[soxfan]

@kelly8 - I did have the stim test in January. I came home from it and crashed. My levels did double and my level at 8am was 8.2 ( range 5-24). The endocrinologist said my adrenals are working fine.

I recently did a saliva cortisol through my functional medicine ind doctor and my day levels were all low normal with the night being slightly elevated.

I am still waking exhausted with no energy and my sleep varies from night to night. Some nights I sleep okay and others I am awake for hours.

I am taking DHEA and Preglelone ...I am getting my gut back in order with probiotics and other stuff.

Doctor says HC won’t help me because I am not really terribly low in the day even though I have horrible fatigue.

It is probably just the illness and I am going through a rough period or I have become a little worse off. I can’t do half the stuff I use to and can go out and do errands maybe once a week if having a decent day...not many of those since my sleep changed in April ...

 

[kelly8]

@soxfan ,
I'm sorry! I was hoping you were going through something similar since we both crashed after that test. Interestingly the endocrine Dr said my values were fine. The functional Dr said they had barely doubled and should have been at 30 by the end.

I hope you can get some decent rest soon! I know how terrible it is to not be able to sleep.
Kelly

 

[soxfan]

@kelly8 ...My Functional Medicine Doctor hasn’t mentioned anything about Cortef yet. I think she was hoping the Ashwaghanda would help. I have been on HC in the past 2006-2010 and I don’t honestly remember if it helped or not. I am just brutally tired all day but sometimes I perk up around 7 pm.

I am sleeping better the past couple nights but I am pretty sure now that my sleep doesn’t have much to do with the daytime fatigue because sometimes I do sleep well and am still tired to some degree all day.

My levels definitely doubled...it started at 8.2 and after two hours up to 30. They did not test me at the hour mark.

I see the doctor tomorrow and see what she has to say...

Kim

 

[starlily88]

@soxfan , I'm so sorry you are going through this. I know the endocrine Dr did a cortisol test. Was this a cort stim test? My functional med dr found that my values didn't double like they should have although they were in "range" according to the endocrine guy. I think it might have been you ( or maybe it was someone else. . Not sure) that had also almost passed out after a cort stim test?

He gave me hydrocortisone to take and it has helped immensely. I'm not fixed but I'm feeling about 65% of my former self and a lot of the neuro symptoms have subsided. Now we are working on the gut issues. I hope you are able to get some relief. .

I was asking soxfan on my thread - what is a functional med dr, and how does one find one?
Because I would love to be on hydrocortisone - because Prednisone helped my symptoms well (brain fog),
and did indeed help my gut symptoms tremendously.

Glad you are feeling better

 

[starlily88]

@hamsterman ...I feel the same in the pm...tired and wired. I feel like I am sleeping good but wake up incredibly tired and exhausted. I would take unrefreshing sleep anyway instead of this.

I can’t hibernate...I don’t sleep at all during the day and most of the time resting is impossible too. I feel wired or overstimulated all the time especially when laying down.

If you feel so wired/overstimulated - have you done a full panel thyroid test?
I keep having to re-do blood work, on Free T4/Free3 Sed Rate, TSH, thyroid anti-bodies.
Like every 3 weeks - I run to the lab.

Sorry you are feeling so badly - with your cortisol being high at nite - one would be wired I assume.

 

[soxfan]

@starlily88 ...Yes had all the thyroid work done. I am on medication and have been for 12 years. My thyroid levels are good and I have had all the correct testing. I am told my cortisol is screwy...too high at night...too low in the morning. But since I passed the test I don’t think Hydrocortisone would help me...