Christian: Reinstatement Question

[Christian]

I just found out that Mirtazapine does not suppress REM sleep. This is good in most cases but when you are stuck in a constant REM state whether due to depression, CFS or WD Mirtz might be the worst med to be on.

 

I'm going to get confirmation from the results of the sleep study but I think I'll need fo taper Mirtz. Sleeping 1-2 hours without meds might be better than sleeping 6-7 on Mirtz. I'm getting no sleep benefit.

https://binged.it/2adzhOi

[Altostrata]

Don't worry about REM vs non-REM sleep.

 

What is your current dosing schedule and symptom pattern? Please refer to the notes you are taking every day.

[Christian]

Alto,

I take Remeron at 10 PM. I promise you that my symptoms are constant all day every day. This has been the case since I got off Lexapro and started Mirtz. It's a constant, fatigued, lethargic state with periodic head pain that usually increases at night time. Even prior to taking the meds. I know you might not be able to help me without a daily symptom pattern. I understand. I just wanted to update everyone. I feel like I haven't slept in 8 months yet I sleep 5-7 hours and sometimes more than that. It's awful.

[Altostrata]

Are you taking any benzos? Christian, why do I have to pull teeth every time I need this information?

 

Why can't you keep daily notes of your symptoms, when you take your drugs, and their dosages?

 

I gather you don't actually want any answers, then. Perhaps you could keep going to doctors rather than asking questions here.

[Christian]

Alto,

 

In my signature it says I stopped the as needed benzo use in mid June. I believe I also mentioned this in my post yesterday. I do not keep notes anymore as my symptoms have not changed once since I stopped Lexapro in March. I can barely focus on the laptop let alone keep notes. I have no new symptoms. No anxiety. Just fatigue, severe fog and lethargy along with the others I mentioned in my original post yesterday. All my symptoms are constant. I have no windows. I am only on Remeron at 15 MG that I take every night at 10 PM. 1-2 nights a week I might take a Belsomra at 11 PM if I cant fall asleep. I feel no different the day after I take Belsomra than when I dont. I am not going to doctors to get meds. I am going to doctors because I cannot walk a straight line or more than 50 yards, my sleep is destroyed and I cannot read or follow TV. I have been diagnosed with CFS from this. My neurologist wants me to do neuropsych testing as the cognitive has worsened. All my doctors say I should come off Remeron. There is no med that can cure me. I am really struggling and I came here to provide an update and say hello not upset anyone. I plan on tapering off the Remeron. I understand if there are no answers you can provide by the info I provided.        

[Christian]

Ill stop by in a couple months to provide another update.  Hopefully, I will be feeling a little better. And I hope others will be as well!

[Vigor]

Hey Christian, I was wondering have you ever had your thyroid checked? I have Hashimoto's Thyroiditis myself all my immediate family has it. It can do exactly what you are describing. 

[Christian]

Hey Christian, I was wondering have you ever had your thyroid checked? I have Hashimoto's Thyroiditis myself all my immediate family has it. It can do exactly what you are describing. 

Vigor, 

 

I will look into this. Thank you!

[Christian]

I posted this in the insomnia section as well but this article specificnally mentions how SSRIs destroy sleep and how abruptly coming off of them can cause a continuous REM non restorative state. 

 

"Intense and prolonged dreams often accompany abrupt withdrawal from antidepressant drugs as a manifestation of REM sleep rebound after drug-induced REM sleep deprivation (Costa e Silva 2006)."

 

http://www.medmerits.com/index.php/article/drug_induced_sleep_disorders/P4

[Altostrata]

SSRIs are not good for sleep. Still, your own symptom pattern is more important than any hypothetical effect on REM.
 
If you can't sleep at all and Remeron helps you sleep, the kind of sleep it provides is better than nothing.

 

Did you do this?
 

....
 
Also, as CW suggested, do not use the computer at night, it interferes with your sleep. As long as your nervous system is so sensitive, you may wish to turn off all lights at nightfall to trigger your own natural production of melatonin, and block out early-morning light with blackout shades, etc. on your windows.

 

You used to take melatonin, what happened to that?

[Christian]

Alto,

 

I need to do a better job with looking at my phone at bedtime. I usually am playing cognitive games. I do take melatonin, tart cherry, and magnesium at bedtime. Last night I slept 8 hours plus an incredible 6 consecutive hour stretch. You would think a party would be in order. Just feels so toxic. I'm going to get the sleep study results tomorrow. I'll share them and I'll try and get the symptom patterns for you. I feel a little better tonight than earlier today and watching/following TV so a symptom did change. Thanks as always for doing what you do !

[Christian]

Hi,

Just wanted to provide the update of my sleep study. I guess I was wrong. Aside from 80 awakenings/arousals during my sleep my actual sleep cycle distribution seemed normal. The doctor said that my "sleep efficiency" was poor for the people that go there but not horrific. When I asked her why it is that I feel like I haven't slept whether I have 2 hours or 8 hours she said that every one is different in their threshold for pain or sleep. I'm going to see the insomnia Dr tomorrow. They help with sleep hygiene and tapering off meds. They encourage sleeping naturally. If I need tapering help I'll come here for it but I'll go and listen to what else they have to say. It's better than staring into space at home unable to read or follow TV. Next is neuro psych testing next week. I'm sure that's not going to be depressing.

[Christian]

Hello,

So just another update.

 

Last week I was in bad shape and ended up in the ER. I couldn't walk straight or very far. My head was killing me and the cognitive impairment continues to worsen. After explaining my story they gave me the usual tests but the neurologist on call refused to allow me an MRI. Because I wasn't a candidate for a stroke I guess. The ER Dr felt bad for me and gave me the name of his neurologist. He also offered to suggest admission to the hospital for another neurologist to treat me. I declined. I then walked out the wrong door of the ER due to fog and had to walk around the entire hospital to get to my car as the door locked after closing.

 

This week I had some neuro psych testing done. I did awful as expected. One exercise was to repeat the list of 10 words that was read to me. I would never get more than 2-3 each time. Same as re-drawing the shapes that was shown to be then removed. The one positive in this is it appears I have another diagnosis to add to CFS. When I told the Dr that I need a medical diagnosis for my problems he said I do have one. When someone has an adverse reaction to a medicine it falls into the "Toxic Encephalotology" bucket. I was happy that at least it has a medical term to it though whenever I brought up Encephalitis to other doctors they would blow it off.

 

Later that day I had an apointment with a new neurologist. I told him my story and he seemed to focus on unimportant things. Then after I was done the first suggestion he had was I need to get on a new med. he offered Lamictal. I asked him how a medicine will help me walk. Or how it can turn my brain back on? Or help with my crippling fatigue. He saw I was pissed and made a smart ass comment about look what condition your in now without a med. he gave me a physical exam but never asked me to walk a straight line. He saw me struggling to walk so I know he knows I'm sick. When I suggested to him what the neuro psych said about Toxic E he said I will never get that diagnosis from his office. He then ended the meeting. I then said "your not even going to suggest any tests?" "Not even an MRI?". He said "oh ok yes that's ok but unless you have a tumor you won't get another diagnosis from me." I declined his 2nd attempt at meds and left. I am seeing two more neurologists next week. I read that our situations might appear on a SPECT test.

 

Hope all is well with all of you!

[ChessieCat]

Hi Christian,

 

A quick search of:

 

Encephalitis = inflammation of the brain itself

 

Toxic encephalopathy (TE) = the result of the interaction of a chemical compound with the brain

 

There is a difference.

[Altostrata]

SPECT is not considered valid for diagnostic purposes. Please use search to read about SPECT.

[Christian]

Of course not! Anything that might help prove our pain is un usable.

[Christian]

Hello,

 

I just wanted to let folks know that I have had the best day since being in this mess. I've been in very bad shape lately. But today all of my symptoms have reduced by I say 25%. I cut the grass, walked my dog, talked to my neighbors, cooked dinner and watched a movie. I'm not sure what it was but my sleep was different last night. I am down to 12.5 of Remeron and use that with Melstonin, magnesium, tart cherry and thiamine. But this morning I felt more restored. Not completely but better. I'll be honest prior to today "checking out" was starting to cross my mind. I think God gave me a sign. I still think I might have some long term damage but at least now I know I won't be in this same condition forever.

 

Hope others have a window soon too!

[downtongirl]

So happy for you!  God is good!

[Christian]

I don't know why I keep updating. I guess it's like a diary for me now. Though I had a day that symptoms lessened I continue to be severely cognitively impaired. More than I was when this first happened. I couldn't understand why it was. The feeling of non restorative sleep has lessened a little. But in addition to the fog I cannot walk straight or for very long. It's gotten worse. It was confirmed when my cortisol/DHEA test came back low. I'm now in the adrenal exhaustion phase being one step away from adrenal failure (sometimes death from what I read). I find it frustrating that just about all of us end up with different levels of stress and anxiety from this. Why is it a small subset of that group get fatigue and a smaller group end up bedridden? I now am feeling this is permanent or if not will cripple me for several years. It's one thing to deal with fatigue. But the thick fog makes it impossible to do anything but stare into space. If I suffer any more of a decline I might be in a nursing home.

 

On another note my cortisol is severely low in the AM. It's actually normal at night. Once I get my long term disability (I hope) I'm switching to sleeping by day and up by night. That way I can watch TV. Read. Maybe Play Russian Roullete with myself.

[downtongirl]

Christian....hugs to you!  I am so sorry you are dealing with so much fatigue.  I too have extremely low cortisol in the am and mine is at a normal level for someone who wakes up at 6 pm in the evening so my cortisol levels in the morning are what they re supposed to be at night and my levels in the evening are what they are supposed to be in the morning.  I was thinking today that I may have to start staying up until early morning and sleep until late morning....I think this runs in my family because several family members are night owls.  I have never been a morning person ever....I have always done my best and most creative work at night after supper time.  I have tried for years to have a traditional wake/sleep cycle but am sort of getting tired of trying to do so.  I had to when my children were small but now that they are grown I may be saying to heck with it and go with how my body reacts.

[Christian]

Back at you Downtown Girl!

So you did the saliva test and it showed your cortisol being low? What I read was that for my results it's severe and most are bedridden. Is that the car for you? Do you have issues walking?

[downtongirl]

Yes I had the cortisol saliva test done.  I can walk...I have some dizziness and my energy seems to be better on some days than others which is frustrating because I am a planner and like to have my weeks planned out but have to be much more flexible and less OCD with my days and not really knowing how I will feel one day to the next.

 

What did the doctor who did your cortisol test say about how to treat your adrenal fatigue?

[Christian]

I ordered the test online from a lab? You had a regular doctor give it to you? Was it 4 times throughout the day? I was going to bring the results to my regular doctor but whenever I bring him something from a naturopath or a lab online he blows it off. Doctors don't recognize Adrenal Fatigue only Adrenal Insufficiency which is Cushings or addisons Disease. I do have a doctor that diagnosed me with Chronic Fatigue Syndrome but he doesn't treat it. I did find a doctor in my area that treats it so seeing him next month. But it's a basic treatment. B complex, ashwaghanda, good proteins (fish, eggs, chicken), no sugar, good carbs, no coffee or soda.

[downtongirl]

Is this the protocol that your naturopath gave you?

[Christian]

Yes. And the same as two adrenal fatigue books I read too. I did read that ashwaghanda is bad with low cortisol in one article as it says it lowers cortisol. But everywhere else I read it was good in either case of cortisol

[downtongirl]

hmmm...interesting...are you taking any adrenal supplements?

[Christian]

Ashwagavda

B complex

Vitamin C

Magnesium

Above are supplements for fatigue

 

 

I have Rhodilia but read conflicting info on it. I might try it again. It's suggested for fatigue. I also take COQ10, fish oil and tumeric for inflammation. Melatonin and tart cherry for sleep.

 

I doubt any of this stuff is helping considering the condition I'm in.

 

My plan is to continue to taper Mirtzapine slowly. Based on my cortisol test my cortisol is so low in the AM and normal at night I'm thinking i will switch my sleep to 4 am-noon. My sons are back in school and I'll hopefully be on long term disability soon so running to doctors for diagnosis will come to an end. I'll be able to sleep without meds if I do it this way hopefully

[ChessieCat]

Hi Christian,

 

If you do decide to try Rhodilia, please start with a low dose and make sure it doesn't coincide with a taper drop.

[Christian]

Oh thank you ChessieCat. I will do that.

[AliG]

I hope it goes well, C. It's been a rough road. However, you can do this.

[Altostrata]

Please do not change your sleep schedule to sleeping during the day. Your natural melatonin is triggered by nightfall.

 

The cortisol tests are not accurate for purposes of treating adverse reactions to drugs.

 

If anxiety and sleeplesness are a problem, you will not want to stimulate the adrenals, source of adrenaline.

[Christian]

Ok that makes sense Alto. Thanks. Is my situation unique that my cortisol is extremely low in the AM while my nighttime is normal?

[Altostrata]

Those cortisol tests are simply not meaningful. See

Cortisol testing

Invalid: Urine testing for neurotransmitters in the brain

Withdrawal syndrome vs adrenal fatigue

How good are naturopaths and other alternative practitioners...

[Christian]

Gotcha. I have felt my fatigue worsening over the last two months. But I see your point that the test may not be accurate. I just can't afford to get worse anymore. I think I'm going to try a couple days without ashwaghanda as I have read conflicting info on it. I keep reading it lowers cortisol and that's not good for me.

[ihadakathisia]

Hi Christian,

 

How was you akathisia? What symptoms?

 

Tried to send PM, but I think you are full.

 

Do you think Remeron helped stop the akathisia?

 

Adrian

[Christian]

Hey Adrian. Per our Facebook email exchange Remeron didn't fix the akathisia. Time did. Remeron has helped with sleep as I'm on a low dose. I'm currently tapering off of it. My sleep is inconsistent. But the issue with me is non restorative sleep, horrific Fatgue, and cognitive impairment. I think the kindling I did to myself has potentially destroyed my brain.