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CoachMeg

Distinguished member
Joined
Mar 4, 2011
Messages
209
Reason
Loved one DX
Diagnosis
02/2011
Country
US
State
CA
City
Roseville
Good morning all! Hubby has a new thing going on and I am trying to figure out if this is generalized anxiety or a physical symptom of ALS. Hoping you can give some advice.

In the early evenings, my PALS starts to feel like he needs to get out of his chair and move. He feels like his body is telling him to go run a couple of miles or something. Generally, his muscles are twitching a lot more during and after this. I do know he feels anxious during these episodes, but mainly out of frustration that he can't do much to alleviate the problems. He has described the feeling as restlessness in his legs and other areas.

We are on hospice as many of you know. I will be picking up liquid morphine and ativan to have on hand, but those are specifically for a respiratory crisis.

Is this something others have experienced?
As always, I appreciate your help and support.
Love and light
Meg
 
Hmm...sounds like anxiety but I'm kind of ignorant about such things. Does he ever do any stretching exercises with help? Sometimes I desperately need a good stretch and just have to. I don't know Meg. Wish I had some good answers for you.
 
Meg. Bob felt like his legs became restless at night and in bed for a period shortly after diagnosis. It did go away though. Not sure if this is what your husband is experiencing. Yasmin.
 
Sounds to me like he's having an anxiety reaction to a physical symptom. If you're going to have ativan on hand anyway, I'd talk to the hospice nurse about trying it for one of these episodes to see if it helps.
 
Meg,

I began having a very similar problem back around Halloween last year. Ativan was the solution for me. I got a prescription for 1 mg lorazepam (generic name for Ativan) tablets through hospice -- above and beyond what's in the hospice "comfort kit". When I feel the "heebie jeebies" start up in my legs, I take one 1 mg tablet. One hour later, if the first pill hasn't nipped things off, I take a second 1 mg tablet. We've also added a 1 mg tablet about an hour before bedtime because I would drift off to sleep normally, but wake up in a couple of hours with a full anxiety attack underway.
 
Heebie Jeebies is a good way to describe it! :)
 
My husband experienced the same thing. 1mg of Ativan generally stopped it, and it became less frequent with time.
 
Heebie Jeebies is a good way to describe it! :)

That is the technical term my hospice nurse and I decided was the most appropriate description for what I was I feeling. :lol:

The best explanation I've come up with for me is that it's a type of claustrophobia that surfaces when other things stress me out. I'd like to escape but I can't. The "flight" response kicks in anyway, so I can either ride it out or tranquilize it.
 
Heebie Jeebies, what I call "the willies". I totally think there is a claustrophobia elemental. Too much head support (pillows) pressure or lapping into my field of vision can get me going.
 
Geez, you mean there is more to come? I got that way when my meds were given to close together and nothing on my stomach. I would have to have somebody move my arms and legs. So, the heebie jeebies, good 1 Tr, I will remember that.
 
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Ativan 1 mg helps my husband. I hope it gives your husband some relief too.
 
Meg,

I began having a very similar problem back around Halloween last year. Ativan was the solution for me. I got a prescription for 1 mg lorazepam (generic name for Ativan) tablets through hospice -- above and beyond what's in the hospice "comfort kit". When I feel the "heebie jeebies" start up in my legs, I take one 1 mg tablet. One hour later, if the first pill hasn't nipped things off, I take a second 1 mg tablet. We've also added a 1 mg tablet about an hour before bedtime because I would drift off to sleep normally, but wake up in a couple of hours with a full anxiety attack underway.

Does the effect of Ativan become less over time. I have heard that you can not take it long term? Since my PALS now takes it, I hope that it will be effective later when He will need it even more.
 
Thank you all so much for the response. Heebie Jeebies is our new technical term! We shall shout it from the rooftops along with thingamabob and whatsitsname!

I think we are going to try ativan. He is also getting liquid morphine as part of the "as needed" medications.

Love and light and have a restful evening all!
 
Kiwi, You're not a bird, you're a chicken! I know, technically speaking. I'm not afraid to ask.

Tr, Did the doctor/hospice nurse ever tell you why these started? I mean, I feel mine were medically induced and I am very careful on timing now, but yours, Missy's husbands, cake's husband and others all suffered from this. You mentioned anxiety, but (other than the big thingie of having ALS) did they determine what caused the anxiety in the first place? Or anybody else? I believe I took 1 at bedtime. But to be honest, it may have been diazepam.
 
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