How to cope with severe anxiety after ALS diagnosis

[AmyD]

Hi everyone,
I’m a 46 year old female that was diagnosed with ALS on July 8, 2024. I have progressive right leg weakness and now walk very slowly with a cane. I’m also experiencing speech slurring and slow speech, increasing twitches, toe clenching/curling under, among other things. I have been in a state of extreme anxiety since then. Also my husband and I just bought a one level home and things are moving fast with modifying it and we will probably move in September. This has all happened in the last 2 1/2 weeks. The anxiety is just absolutely overwhelming. I have a prescription for Diazepam from my psychiatrist but I’m afraid to use it too much and get addicted. I have daily upset stomach and digestive issues from the anxiety. How do other ALS patients handle the severe anxiety and the accompanying physical symptoms? I have an appointment with a therapist today so I am going to be receiving counseling.
Please any advice or suggestions would be helpful!!
Thank you so much to anyone who reads this.
Amy

 

[santimo]

Hi, I'm also relatively newly disgnosed (may 2024). Honestly, its a struggle. It looks like you are using many tools that are available to you like psychiatrist and counseling, and those seem very good steps in the right direction. I would put my trust in those professionals and I also try to talk with my family and close friend frequently if you can. I started on very low dose of diazepam (0.125g before I go to bed) and it has helped me as my anxiety would mostly kick off at night in bed, when my body relaxed but the twitching got worst, keeping me awake and thinking about the disiease. I was very hesitant to try it but it honestly has helped me.

 

[KimT]

Hi,

I take both Remeron (low dosages help with sleep and anxiety as well as depression.). I also take Diazepam (5mg. twice a day.). It helped with cramps and anxiety.

You will hear that Benzos affect your breathing and it's true. I weighed the pros and cons of Diazepam and, for me, the pros outweigh the cons. I tried SSRIs (Zoloft, etc) and they just made me more nervous and bothered my heart. Some people have no trouble with them but I do.

Some other things that have helped me with anxiety are magnesium oil and magnesium. When I forget to take my magnesium I notice more symptoms which triggers anxiety.

I've had counseling, massage, and I meditate daily. For me, swimming (or floating) in the warm pool helps me relax.

The physical symptoms will never leave but they can be mitigated by lifestyle strategies and meds. I try to have some sort of project going at all times to divert my attention. I was working when I was first diagnosed but, in a panic, went out on disability. I soon found that I had to fill that void. In the beginning it's just hard to accept. With all you've got going in your move, it must be hard. After you get moved and settled, things will calm down.

Just try to find something that makes you happy each day. Don't worry about addiction. Just find the right dose, with your doctor's approval, that works for you. You may need more than one med but that is okay. Severe anxiety will hurt your general health and make your symptoms worse.

Kim

 

[Lori7]

Hi. I am by no means an expert in anxiety, but I’ve had manic depression with anxiety for 37 years. A few years before my diagnosis of ALS, my GP weaned me off benzos until I was on a very tiny dose. I wanted to go back on them when I found out I had ALS, but doctors wouldn’t give them to me, except for the tiny dose, because they’re addictive. I tried to tell them addiction is not a concern when you’re dying, but they still wouldn’t give them to me. But it’s o.k. now, because,with all the other pills I’m on, I would probably be too sleepy if I was also on benzos. I am also on SSRIs, which help with anxiety, but I found that not long after my ALS diagnosis, I couldn’t sleep, and was up every night thinking about dying and waking up my husband because I was terrified. My grandfather did the very same thing when he had terminal lung cancer many years ago.

Luckily, they gave me seroquel (quetiapine), which is a very good drug, even though it may have caused weight gain. I take it at night, and I usually sleep, which goes a long way towards improving my morale. I read a lot on the computer during the day, but also try to think about dying as much as I can while listening to music without getting too freaked out. I am still in a lot of denial, but I am donating a lot of my things to charity, which my therapist says is a sign that I am accepting things a bit.

It is very difficult for anybody to accept their own death, but with time, you will learn to enjoy every day that you have left, while trying to have some hope that there will be a miracle and a better treatment for this dreaded disease will be found. I haven’t accepted the whole thing yet, but it is a bit better than it was.

 

[Loulou22]

Hi there,
Your story sounds very similar to mine, diagnosed very quickly at 41. I didn’t think I was going to make it, my anxiety was so bad, but here I am, nearly 2 years on.
First of all, it is totally understandable that you are feeling highly anxious and maybe even depressed. So go easy on yourself.
This diagnosis is so life altering, it will take time to process and get your head around what it means for you and your family.
You can’t hurry the process along, but have to work through it. It’s really hard but it will get easier.
I’ve dealt with GAD (general anxiety disorder) for much of my life and was already medicated but it didn’t help.
So, under the guidance of my GP and a psychiatrist my med was upped. My anxiety medication is Lexapro, a common antidepressant, used daily instead of as needed like diazepam. While that was kicking in and to deal with the side effects I was given diazepam as needed, which I didn’t take too often as like you, was worried about becoming addicted. But, don’t do it to yourself, take it if you need to and do what you need to get through in the short term and have a long term plan, like a more suitable medication and other strategies.
I went to therapy (ACT therapy to be exact) but more helpful for me was a book called ‘The Reality Slap’ by Dr Russ Harris, which is based on ACT.
I was persistent with meditation and found it somewhat helpful.
But I think mostly it’s time. It took me a good few months of constant anxiety and depression, thinking I’d feel like this forever, to emerge on the other side. Don’t put pressure on yourself to ‘be ok’ just let yourself feel what you are feeling. It’s temporary. I eventually had little good moments, until after a few months I realised I was feeling more myself and able to engage in things that make me feel happy which then helps the process along, too.

 

[yogi123]

In the beginning I trusted however I was coping naturally with the "knowing about ALS" without trying to change that. For me that was a mixture of ways of "knowing". I think my mind and body were naturally protecting me and allowing other priorities whilst also processing the information. Most of the time I "knew" as thought in the background - knowledge without feelings. I did my internet shopping, paid bills, cooked food, visited friends. I allowed this experience of knowing, which was also a kind of not knowing. Then there was sudden overwhelming knowledge that visited me three or four times a day. This was a flash of image and a sudden lurching feeling. I allowed this experience of knowing to also be. I sat down, stayed still and felt the sensation of slow steady breathing. I stayed with my body and moved from one breath to the next, that was all I could manage. I just trusted I would be ok These sudden ways of knowing lasted less than a minute or so and passed. I let this come and go exactly as it was. I think this carried on for maybe a month as my mind processed the information.