Why do I feel so bad?

Dana J

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I'm a new member. I am a male, 61 years old. It has been 21 months since onset of bulbar symptoms (slurred speech, difficulty swallowing, stopped snoring) Was diagnosed with bulbar onset ALS last October.

Was in denial for 9 months as bulbar symptoms progressed but no limb or respiratory symptoms. Decided to go for a second opinion last month as symptoms gradually progressed. The diagnosis of bulbar onset ALS was confirmed with the second opinion as upper and lower motor neuron symptoms were evident in the bulbar region upon examination.

I have just this month been getting plugged in to a local ALS clinic, had 3 appointments with a speech therapist, an appointment with an ALS support nurse and have an appointment Thursday with an ALS social worker.

My bulbar symptoms have progressed to the point that I am going to be scheduled for a peg tube within a few weeks because it has become such a chore to get necessary hydration and nutrition. I have lost 30 pounds since first diagnosis. I also just purchased an ipad and have installed a text to speech app because my speech has deteriorated to the point that I'm difficult to understand.

This week I have started experiencing spacticity in my right jaw muscle when I sleep at night which causes pain and I am treating it with Advil.

At my second opinion appointment my limbs all tested 5 out of 5, all the way from fingers to toes, no limb symptoms (after 21 months). I have also had two breathing tests (one in July and one last week) both came back normal. So that is a brief history.

I have a question that no one I have seen for treatment has been able to answer with any clarity. From the onset of my symptoms I have been experiencing severe mental fatigue, not just fatigue from eating or talking but extreme malaise. This fatigue has worsened as the disease has progressed to the point that I am very limited to what I can do. It is especially bad in the morning when I wake up, it takes until about noon before I can even function.

For my nutrition and fluids, even though getting them all in is a chore, I am getting between 1500 and 2000 calories a day. As I said, I have no limb or respiratory symptoms so I don't have limb weakness and I'm not short of breath after an activity. I just feel terribly bad most of the time.

I have searched high and low online to see if any other PALS have this kind of mental fatigue and haven't really found much evidence of that except in late stages with respiratory issues. Also I am on depression and anti-anxiety medication and have an appointment with a psychiatrist in 2 weeks. Any input from PALS or CALS would be greatly appreciated.
 
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KimT

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I'm just taking a guess but it might be depression and your meds might need to be changed. I have a lot of personal experience with depression and it is common to be worse in the mornings. Are you sleeping OK? Sometimes, anti-anxiety meds can make you lethargic. Talk to your doc about your meds.

Also, you probably should try to increase your caloric intake to see if that helps. The PEG tube should help a lot with this. If you're hypermetabolic, you may need more than 2,000 calories a day.
 

KarenNWendyn

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I agree with Kim that the possible reasons are likely to be some combination of weight loss, depression, medications, and sleep quality/ quantity. You’ve ruled out a respiratory cause.

So upping the calories and taking a look at the medications, depression, and sleep will probably help. If you feel your depression is under good control, then consider a sleep study to rule out a sleep disorder.
 

Nikki J

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I think/ hope you will feel better with the tube and second Kim’s advice.

You say you have no respiratory symptoms. I hope you have had your breathing tests recently sitting and lying. Also some kind of night time respiratory assessment. Respiratory issues can be insidious and cause fatigue and weight loss so if you haven’t please do
Also important to conserve energy however you can
 

Dana J

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Thanks for your quick responses. I do agree that the antidepressant medication might be playing a part in this.

I went off of the antidepressant for 9 months in my denial phase thinking that maybe it was the antidepressant that was causing my slurred speech. I still had mental fatigue while off of the medication but had a terrible time with the withdrawal symptoms. I had late onset of severe anxiety which prompted me to go back on the medication. When reinstating the medication I went very slow but the drug had a side effect of anxiety and panic attacks which were so bad I didn't leave my house for a month. Most of the anxiety subsided but it was so bad that I stopped the dosage at half of what I previously was on because I was afraid increasing it more would cause even more anxiety. Stopping the dose where I did was effective in stopping all of the withdrawal symptoms though. I had been on this drug for 12 years and it worked very well, no depression or anxiety. When the doctor had me reinstate the antidepressant he prescribed me Ativan because of the side effect of anxiety that came along with the antidepressant. I am now down to taking only .5 milligram a day of Ativan so I doubt that is causing me difficulty.

I agree about depression could be a cause of feeling bad in the morning. Years ago before going on the medication I felt bad in the morning and better as the day progressed.

As far as my sleep goes I sleep pretty well. I have periods of insomnia that might last for an hour or so. I take a magnesium/gaba/melatonin supplement and a small amount of CBD oil before I go to bed and that helps me fall asleep. I usually wake up between 3 and 5 and take more CBD oil and that helps me go back to sleep. We purchased a PulseOx to measure my oxygen level when I wake up and it has consistantly registered between 95 and 97 so my oxygen level is good. When I'm sitting during the day it registers lower, usually 92 to 93. My respiratory therapist gave me some breathing exercises to deal with that. We did talk to the ALS nurse about the possibility of having a sleep study in the near future.
 
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Dana J

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Another thing I failed to mention is I have absolutely no appetite. I am only eating and drinking because I need to, which makes getting the peg tube a definite quality of life issue for me.

Also to recap, I have had this mental fatigue ever since symptom onset, to a greater or lesser degree. I had it when on the full dose of antidepressant, on no antidepressant, and now on the half dose of antidepressant. As my disease has progressed it seems the mental fatigue has progressed along with it.
 

KimT

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You didn't mention what antidepressant you were on. I take Remeron and that also helps with sleep and appetite plus it is good for anxiety. I tried every antidepressant on the market in 2003 and Remeron was the only one that I could tolerate. At lower doses, it works mostly on serotonin (15 mg.) but on higher doses (30 or 45) it works on both serotonin and norepinephrine. So at lower doses it is more calming and at higher doses it is more activating. I was on 30 for some time, but I was too energetic so I dropped it to 15 and that worked for the past 10 years for me.

I agree that a sleep study might shine some light on what is going on. I always test my FVC standing, sitting and lying down to make be more certain.
 

Dana J

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The antidepressant I'm on is Effexor (Venlafaxine) 75 mg extended release daily. My ALS nurse also recommended Remeron. I will talk to the psychiatrist about that when I see him. Thank you.
 

plcare

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I would recommend having your pulmonologist conduct your breathing tests in the supine position. Diaphragm weakening may first manifest itself while you are sleeping, and can cause the morning symptoms you describe. I was respiratory onset, and my initial symptoms were very similar to what you experience in the morning.
I would also suggest speaking with a nutritionist. Mine recommends a caloric intake of 3000 calories/day. Since I no longer have much of an appetite, my wife supplements my diet with lots of Boost and ice cream.
 

blitzc

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I would recommend having your pulmonologist conduct your breathing tests in the supine position. Diaphragm weakening may first manifest itself while you are sleeping, and can cause the morning symptoms you describe. I was respiratory onset, and my initial symptoms were very similar to what you experience in the morning.
I agree with this comment. My morning exhaustion has improved greatly with usage of non-invasive ventilation using a Trilogy.
 

Dana J

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I do have an appointment with a pulmonologist. I have not been contacted yet by their office and was told that the wait may be as long as 2 months. I'm hoping to be able to increase my calorie intake once I get my peg tube. It's just too hard now with my swallowing and lack of appetite. Hopefully I should have the peg tube within a few weeks.

I have been drinking Boost Plus daily but I found that if I drink 2 or 3 I get diarrhea, so I have been only drinking one and I drink 1 or 2 Carnation Instant Breakfast with soy milk. I have eliminated dairy because of mucus. I tried Ensure Plus and the Kroger brand but didn't like the flavor. Does anyone have an opinion about these nutrition drinks?
 

Dana J

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Also, I was wondering since I get diarrhea drinking the Boost Plus is it likely that the formula that I will be getting in my peg tube will also give me diarrhea? I have read about the Kate's Farm natural brand on the forum, do people have better results with that?
 

KarenNWendyn

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My opinion on nutrient drinks — many of the ones like Boost, Ensure, and Carnation Instant Breakfast have a lot of sugar and corn syrup. That’s bad news. I get Kate Farms Komplete meal replacement shakes online. They are dairy free, gluten free, soy free, and corn free and use agave syrup as a sweetener. Plus they taste good. Or, blend your own smoothies using some combination of almond milk, coconut oil, protein powder, fruits and veggies, nut butters.

Tube formula does not need sweetener since you can’t taste it anyway. I use Kate Farms Peptide 1.5 in the tube alternating with Liquid Hope. Some people blend their own tube food. Your insurance people will try to start you on something like Isosource or Jevity because they’re cheaper. But they have corn syrup. If you don’t tolerate those, you can probably get the organic formulas (Kate Farms or Liquid Hope) covered. Boost is not used for tube feeding to my knowledge.
 

KarenNWendyn

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Dana, I see you’re in Southern OR. We’re neighbors!
 

KimT

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While you're waiting for the tube, why not blend some high-calorie shakes. I use full-fat Greek yogurt, coconut oil, organic dark chocolate, avocados and nut butters. Then add almond milk. One of these shakes is over 1,000 calories per 8 ounces and gives me a huge boost of energy in the morning. Also, the ingredients are very healthy.
 
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