Struggling with SSRI side effects

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wmilo

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This may be slightly off-topic and if so, please bear with me. It is a result of my diagnosis/symptoms, and I don't know of a more knowledgeable or supportive community to ask:

I was diagnosed about 13 months ago, with lower extremity onset. I can still walk with difficulty, but see progressing decline. About seven weeks ago I started taking an SSRI (escitalopram) mostly for anxiety. My family reports some lessening of symptoms, but I am struggling with fatigue (feel tired most of the time) and loss of appetite (lost 8 pounds since starting the drug).

Have others used an SSRI-family drug to help cope with their ALS? Did you have similar side-effects and how did you combat them?

Are SSRIs a typical/common drug for PALS? Are benzodiazepine-family or similar drugs more common?

Thanks in advance for any responses, and best regards,
Bill
 

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Hi Bill, what is your breathing status is the first thing I would ask. Are you using bipap at all? Fatigue and tiredness is part of ALS so distinguishing it from a side effect can be difficult.

Do you take the med in the morning or the evening? Sometimes taking of an evening will help you sleep, but taking of a morning can really make you drowsy.
 

lgelb

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Loss of appetite/fatigue are common in both ALS and SSRI use. Since you think it's helping otherwise, you could ask your doc about trying a different SSRI or reducing the dose of this one, to test the hypothesis that your experience is SSRI-related.

Fatigue can be related to quality of sleep, which SSRIs can reduce (changing the amount of deep sleep as compared with total sleep).

Benzos are typically used in later stages for air hunger since the struggles with that are more acute, though arguably optimal BiPAP settings would often improve the struggle for air/anxiety that feed each other. Benzos reduce respiratory drive and demand; SSRIs do not.

Are you on BiPAP, Bill?
 

KimT

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Bill,

You might want to ask your doctor about Remeron. Most doctors don't prescribe it but it has fewer side effects than SSRIs. The main two side effects are increased appetite and constipation. It helps with sleep, dries your mouth out a little. I've tried most of the SSRIs (way prior to ALS) and all left me feeling more anxious, giving me heart-related symptoms or something where I had to discontinue. Remeron was the magic bullet. I've spoken to a psychiatrist friend about it. It isn't pushed on primary care doctors because of the potential of enormous weight gain. I could never get over 107 and I'm tall. Remeron made it easy for me to go to 120.....and beyond when I was diagnosed. For me, it was much better as a sleeping pill than any benzo or pills designed for sleep.

I have no problem taking Valium because it's the only muscle relaxant I can tolerate but taking a benzo can be bad for breathing, especially at night. So far I can still sleep on my back without Trilogy.

Just wanted to tell you my experience.
 

Kristina1

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Are you taking nuedexta? it is contraindicated with SSRIs according to my neuro, so she put me on a low dose benzo instead. Just checking, im guessing your doctors would already be aware, but just in case that could be a factor thought I'd mention it.
 

wmilo

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Thank you, Tillie, Laurie, Kim, and Kristina for your replies. In reply to your questions:
- I am not using BiPap or other breathing support, and am not experiencing being out of breath with activity or while lying down.
- The last couple of times at the clinic, I blew 79 and 81 (two tries) for the pulmonary function.
- I started taking the med in the morning, and switched to evening, but it didn't seem to make much difference - I'm usually drowsy and napping until around noon every day.
-I am not taking Nuedexta or other like drugs.

Laurie, thanks for your comments about benzos. Quality of sleep may indeed be contributing to what I'm experiencing. Similar to Kim's experience, I've also felt heightened anxiety at times although fortunately not constant.

Kim, thanks for the mention of Remeron. I'm not familiar with it and will check it out.

I plan to give the escitalopram another week or three and see if things improve. If not, I will talk to the doc about weaning off and see how I feel before trying something else. I'm a little gun shy because I had a tough time with these side effects

Thanks again!
Bill
 

KarenNWendyn

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Bill, are they doing your pulmonary function tests with you lying down? There can be a big difference in the numbers going from sitting to reclining, and reclining is a more accurate reflection of your position while sleeping.

That said, some people do get fatigued with various antidepressants, and there may be some trial and error before finding the one that works best for you without significant side effects.
 

ShiftKicker

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Bill, I had a devil of a time with ssri meds. It ended up they simply didn't work for me, despite trying quite a few- some even in lower dose but in combination with other things to mitigate side effects. It takes a whole bunch of patience to wait the weeks needed to see if you can gain benefit and weigh whether they work enough to put up with the side effects or not, so I'm glad you are sticking with it and giving it a chance. I hope the end up working for you, but if they don't- it's the drug that failed you and not the other way around!

With regards to what I managed do to deal with anxiety- really working on getting a decent sleep. If I get a good sleep, I find I can cope much better during the day. BiPAP, a very aggressive approach to addressing physical symptoms and a mild sedative at night. Lack of sleep compounds any issues, even minor, so it's been the thing that works for me.
 

wmilo

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Karen and SK - thanks for your comments.

Karen, I might have used the wrong term; I think what is happening is vital capacity testing (max exhalation after max inhalation), and it is done sitting up.

SK, thanks for the encouragement and comments about getting a good night's sleep. So true.

Best regards,
Bill
 

Nikki J

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They can and should be doing the clinic screening test both sitting and lying. As Karen notes there can be a significant difference between the 2. It only takes a few minutes and can be done the exact same way. You just lie down on the exam table. I honestly don’t understand why every PALS doesn’t have this done every visit but I think it is most often not until the patient reports symptoms
 
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