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Kristina1

Senior member
Joined
Jan 26, 2017
Messages
822
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
City
Grafton
I'm struggling with feeling depressed and a loss of interest in every day things. I prefer to just read or sleep over spending time with my family and doing any kind of actual activity. This is not how I used to be and it is not who I want to be.

How do you cope with grief and depression over ALS? If you chose medication to treat it, what medication are you finding helpful? I'm skeptical that an anti-depressant would help. My understanding is they help with chemical imbalances that cause depression. But my depression isn't chemical, it's situational (grief/despair about the dramatic changes ALS has brought and will continue to bring).
 
I can relate fully to this dynamic. Increased apathy and isolationism are the issues at hand.

I tried 3 different anti-depressants and settled on Wellbutrin. Neudexta can be helpful as well.

Some people handle this more optimistically.......but some are like you and me. Having your quality of life being stripped from you is devastating to ones mental health.

Perhaps the answer for those like us is to start taking something like Klonapin and just live out our life being comfortably numb...................:)
 
First, I encourage you to consult with a medical professional. I think that especially when it comes to depression we are not capable of self diagnosing the situation.

With that said, I think there is a fine line between simply withdrawing due to depression vs. genuinely not feeling well enough to participate in relationships/activities.

For the second, I try to adopt a positive attitude knowing that my days are limited. If I don't do something today, will I feel any more capable of doing it tomorrow? I think I still have a lot to offer in terms of relationships and helping organizations with the expertise I have developed over the years.

I want to give as much as I can give and participate to the greatest extent possible.

Steve
 
Situational depression or anxiety can lead to chemical imbalances so I would suggest seeing your doctor.

I take Remeron. It is helpful for sleep, appetite, and mood. It also dries my mouth. The downside is that it can give you constipation. I take lots of magnesium for both constipation and cramps.
 
Kristina- I am so sorry you are struggling. You are right, situational as opposed to brain chemistry is a pretty good call. Steve brings up a good point, are you withdrawing because you are depressed? Or are you withdrawing because activities and social interaction draws heavily on your energy?

I was fortunate to have an occupational therapist walk me through my day and point out where I may be overdoing things or where I could make some changes to preserve energy for the things I find important. I am not sure if you have access to an ot who can help you with this, but it might be something to ask about.

Do you have restful sleep? Do you use a BiPap? Are there times of day you feel more able to engage? Are you getting adequate nutrition right now (with young kids, it's often not a priority for a mum- I once realized I'd eaten nothing for days but a bit of this and a bit of that from what I'd been preparing my kid's meals).

With regards to meds to help mood- do you have access to a counselor or psychiatrist/psychologist? Someone experienced with dispensing antidepressants may be able to help you work out how much is actual depression and how much is the profound fatigue that can come with MND. The symptoms of fatigue and the symptoms of depression are often mistaken for each other.

best

Fiona
 
Everyone will likely have a different approach on this. I think a certain amount of depression is completely normal and understandable given the losses you are facing, the lack of energy you are dealing with, and knowing that the losses will only continue. The reality of the situation is somber and f***ing sad.

So my first bit of advice would be to cut yourself some slack and let yourself grieve for the losses and to allow yourself to feel what you’re feeling.

Then I think it’s important to focus on what you can still do and on what you still have. Kristina, it sounds like you have a wonderful family, and they love you and have your best interest at heart. That’s something to celebrate.

The next thing, realizing you don’t have your normal energy and motivation, is to maybe decide on one or two things you you want to accomplish for that day. If you are having a horrible day, then maybe try to accomplish something that will make you feel a little more comfortable.

Make sure you have a handle on controlling pain and improving sleep, as those can impact your mood. If you are doing all the above and are not happy with your mood and level of motivation, then it doesn’t hurt to see your doctor and try an antidepressant. Even though your depression is situational rather than chemical, it’s still adversely affecting your ability to enjoy what you have left. Sometimes medications can help get one out of a mood slump or provide that extra boost to set some goals.

I’m finding that cbd oil has helped my mood and my sleep. This may not be for everyone, and I may later need antidepressant medication, but it is working for me now.
 
As one well aquainted with the black dog, the issue isn't feeling depressed as much as always feeling depressed. If you aren't feeling at least a little depressed, you aren't paying attention. But the issue is are you stuck. If you are stuck there are a whole list of drugs to deal with that. Your brain is an organ, and sometimes that organ isn't working as it should. People have no issues taking medication for their heart, for diabetes, for a whole host of problems. But somehow taking meds for depression seems difficult. I have taken paxil for most of 15 years after trying several different SSRIs. Remember you have a disease that effects nerves, and your brain is a bunch of nerves.
 
When I talk about antidepressants, some people think of "Drugs" with a capital 'D' as though taking a pill will make them feel woozy like alcohol or feel high like reds, but antidepressants don't do that.

No anti-depressant ever made me "feel" anything. I don't get woozy, high, or anything at all. I simply don't feel depressed. I am in control of my thoughts and actions.

When I take my morning medicine, I don't get irritated easily, my moods don't swing. My actions and words are more socially acceptable.

Some people feel like there is a character weakness involved. My parents told me that any sign of sadness was to be avoided, since someone else had it even harder. But that's not a reason to avoid antidepressants.

Since 1996, I have taken an anti-depressant daily. I wish I had started much, much, sooner. My career and my personal life would have been much more productive and happier.
 
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I'm honestly not sure how much of my low energy and low motivation is physiological due to ALS and how much is due to depression. I know that ALS is affecting my energy level and causes a lot of fatigue-- I had that fatigue long before I felt I was dealing with some depression. But I don't know how much is the physiological part alone, and how much is the added burden of low mood. And there is also a kind of chicken/egg thing going on I suspect.

Where I know low mood is impacting me is the fact that I don't even want to do things that I know are not tiring and which I previously enjoyed. For example watching a movie at home with my husband. We used to love to watch something together, and I know that isn't tiring since I don't even have to move to do it. But I'd rather go to bed at 7:30pm then watch a movie or a show. To the point that I knock myself out with benadryl because I just want to be asleep.

I'm not sad all the time, I still have various enjoyable moments throughout my day, but I think what worries me about myself is the apathy. The lack of interest in finding something fun to do. I think it'd be easier in the spring/summer. The weather outside really drains me. Somehow all the work of bundling up, of having to pay so much more attention to walking due to snow/ice, and the cold itself makes my limbs very stiff and kick out uncomfortably worse than normal. I have a feeling I'd be having a lot more good mood days if I could take a brief trip out in nice weather.

I don't know. There are a lot of factors to consider I guess.
 
When I first started going to my clinic visits they would always ask if I was "depressed". And I would always give them the same answer "of course I am, I have a terminal disease, I watch my body die daily, I watch my loved ones suffer, and this illness screws with my emotions, what the he11 do you expect". That of course lead them to try and "force" me to take anti depressants (please note that I do not judge people who do want them I just don't) etc..

In my opinion they were asking the wrong question. The right question is "what do you want to to with rest of your days and how do you want to be remembered?" For me the answer is that I want to love my family and be remembered for doing so. For me "to love" means to count them as more important than myself. So even though I am so dependent upon my wife for everything I try not to complain, not to upset her, not to ask her for things unless I have no choice, to help by ordering groceries on line, to help her with her work by offering any support I can think of. When I am asked by any one how I am doing I reply by asking how they are.

This takes a lot of effort and a lot of reminding myself of who I want to be, because it is so easy to feel sorry for myself. This illness sucks. In so many ways it seems unfair, and I am sorry for all the losses you are going through and will continue to go through. I use this forum to ask questions and whine at times, but I try to always put those nearest to me first. When the dark thoughts come I remind myself of who I want to be and what I want to be remembers for. Those thoughts are not consistent with what I want, to let them win is to loose against this nightmare.
 
Kristina also makes a point about getting outdoors, which can be hard to do in the winter, depending on where you live. Definitely getting outdoors, even if just to sit and look at your garden, is therapeutic.
My partner has seasonal affective disorder, which manifests as low motivation during winter months. She has had some success sitting by a full spectrum light for 30 min in the AM while she reads. This product came from a company called Nothern Lights Technology.
 
I knew when situational depression became clinical depression when i was çrying every day and apathetic about everything. Started a low dose of lexapro and felt like the heavy cloud lifted.
 
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