claustrophobic

[Kristina1]

This is something that has been on my mind since I was diagnosed 6 or 7 months ago.

My whole life I have had claustrophobia. It was worse when I was a child because I was unable to reason through frightening situations, but it's still a part of my life as an adult. It doesn't become an issue unless I am having an MRI or something like that.

When I think about later progression of ALS-- being paralyzed-- my claustrophobia roars up in a panic. So I try not to think about it. But I worry that I will be stuck in a state of total panic when my body gets to that stage.

Has anyone else struggled with claustrophobic thoughts in relation to their ALS? How do you work on it to prepare for the future?

 

[azgirl]

I was terribly claustrophobic,but strangely not anymore. Can only move my neck now,but keep my world open by sitting outside a lot and staying busy on my computer

I had your same terror about this but it never happened.

 

[MToole]

I am not fully claustrophobic. I could be in a MRI machine or confined space with no problems. However, if my arms got stuck, tied or bound up where I could not move them, I would freak out.

My progression started with my left arm and moved to my right arm and then my legs.

I think because my progression was slow and I had to adapt along the way while losing the ability to use my arms, I didn't freak out when I wasn't able to move my arms anymore.

Matt

 

[KimT]

Maybe you can try some guided imagery, meditation, and self hypnosis.

When I was traveling a lot as a bank auditor, I was in a very small plane and ran into very bad weather. After we landed I dreaded the next flight. I knew it was a phobia so I went to a shrink and he taught me how to do self hypnosis. I'm very sure there are videos on You Tube.

Matt, I have the same issue when someone holds me down or holds my arms. I can do an MRI but I can stand to be constrained.

 

[LizF]

Hi Kristina,

I have pretty bad claustrophobia too, I needed a LOT of Ativan to get me through an MRI.
I was worried about my body changes as well, to the point of panic. Turns out that because the changes are gradual, I've been able to adjust.
I use hypnotherapy and self-hypnosis, and meditation, which helps with any panic attacks. The other thing I found was that as long as there's no EXTERNAL force that's keeping me locked up/in, it's not the same feeling as that of suffocating.

xo

 

[Kristina1]

Thank you for the replies, it is reassuring to read. I think the gradual changes thing makes sense.

 

[CarolSue]

I have the same anxiety about not being able to move. At times I feel like I'm about to throw a child like temper tantrum.

I can still just barely move my legs, if I'm in an upright position I can usually move them with the help of my hands. While lying down I cant really move my legs at all. With a little help I can roll to my right side. Arms work, but are getting weak. Hands are weak and fingers have curled or are curling.

I have some serious anxiety about being paralyzed. I have only slept in my hospital bed a handful of times. I have a phobia about choking or not being able to breathe and I cant get out of bed on my own. I sleep in my powerchair...I live in my power chair. Some days I feel like I'm going to go off the deep end if I don't get out of my chair. Ive taken Ativan and had my husband put me in bed for a nap. It feels so good. I just cant make myself sleep in there at night. I also cant sleep in the dark anymore.

I hope and pray I can find a way to cope.

CarolSue

 

[affected]

CarolSue my Chris was set up in the lounge room. He would take meds at night and also he would go to sleep with the TV on. It did eventually turn itself off but he found that allayed some fear for him - just the bit of light and sound and something to focus on.

Do try the meds at differing doses or times to take the dose. MM may help a lot too?

I say do whatever it takes to cope and never feel like that is not coping - whatever helps is a blessing!

 

[Twitcherama]

I was terribly claustrophobic,but strangely not anymore. Can only move my neck now,but keep my world open by sitting outside a lot and staying busy on my computer

I had your same terror about this but it never happened.

How are you managing to post? Eye tracking? My biggest fear is losing the ability to communicate.

 

[KimT]

CarolSue,

Even though I can still move and get up I've found that falling asleep with the TV on or listening to a CD helps. I do not like totally dark rooms. When they did the remodel here, I had to sleep with Fred and Ace (my dog) in Fred's king size bed. He has blackout shades and the room was totally black. I woke up the first night and thought I had gone blind! I felt like I couldn't breathe. So I started bringing my iPhone to bed. I played books and positive affirmations on it. The screen stayed lit so I could see the room. The remodel took so long I eventually got used to sleeping in the dark and actually slept more hours than I did before or after.

I'm back in my remodeled room now but my shades are not blackout so the room never gets so dark I can't see what's going on. I still sleep with music or meditation/prayer playing and I sometimes have to take a Xanax if I get stressed.

 

[CarolSue]

Thanks Tillie and Kim. I sleep in the living room with a lamp and TV on. I hate going to sleep so usually "stay up" till 1 or 2. Last Sunday night I decided to go without Ativan before "bed" and paid for dearly it. I was still awake worrying about everything under the sun at 5 am when my husband got up. I wont make that mistake again.

I plan to order some CBD oil (Charlottes Web) but not sure how to get my hands on Medical Marijuana.

CarolSue

 

[KimT]

CarolSue,

The CBD oil did help me with anxiety and, I think, cramping. I know when I stop taking it I don't feel as good. Restful sleep is important. I used to be a morning person but now I'm up until 1 or 2 every night but I sleep in until 9. When I don't get to sleep in, I am foggy. When I am rested my mind is sharp.