Panic Attacks

[LornaDoone]

My PALS has been experiencing some crazy panic attacks. It is totally understandable with what she's been going through. Her bedroom was moved to a lower level of the house. She rarely sleeps with her husband anymore. AND is on a different floor. Her lung function is going down.. She is having troubles breathing at night and this causes panic attacks. Nights are super rough. She tries not to nap during the day, but that doesn't really help.

She just had an appointment and went over these issues. She has had some medicine increased and prescribed something additional for the panic attacks. I am confident we are doing what we can medically to make her as comfortable as possible. But, it is still heartbreaking. We have hired additional help with waking and putting to bed. We will get more for daytime help when the need presents itself.

I am the only local family member able to help out and it's a lot of pressure. In my mind, I know I'm doing a good job. In my heart, I am concerned that I'm not doing enough. I am not getting the family support and I dont know why. I do not judge others for not helping out more. I wonder what they are going through that they feel the need to avoid the situation. It's amazing really. The avoidance and not wanting to address the issue. We've had the diagnosis for quite awhile and nobody seems to take it seriously. Or perhaps I am just being too emotional when there is no need to be.

I dont know, but felt this was a safe place to vent.

*tears start to dribble*

[abbas child]

Mandolyn,

Don't, please, beat yourself up--listen to your head and know you are doing all you can. I'm sure that as you read posts here, you'll see that having noninvolved family members is extremely common, and frustrating. An understatement. Bless you for your caregiving.

I hope that the medicine prescribed for her panic attacks will begin to kick in and to help. It must be miserable for her. I may be totally wrong, but my thinking would be, let her sleep whenever she can do so. I take naps and get a short lived energy boost right afterward.

This is a safe place to vent. Giving you a hug...
Ann

[Laurie Staller]

Hi Mandolyn.......it sounds as if you are doing everything possible to keep your pals as comfortable as possible. I am also in the same situation, whereby other family members carry on with their own lives as if nothing has changed around them. Just know, that you are doing your best and without you, your pals, probably wouldn't even be able to cope. I do everything I can to ensure that my sister is comfortable....addressing each awful symptom as it surfaces....and it sounds like you do the same. I cherish the time that I spend with my sister.....and I hope that you can do the same. Don't spend needless time thinking about the others in your family, just enjoy the time you spend with your pals and know that she needs and appreciates you and all you give......God Bless......Laurie xo

[LornaDoone]

You know, it was so hard getting all the extra help. I wanted so bad to be able to do it ALL myself. I'll be damned if some stranger was gonna mess around with my PALS privates and take care of intimate things. I was not having the possibility of someone not being gentle or understanding. NO WAY!

But the move for more help went fantastic. Now, I am free to go over at night and do a puzzle or whatever else I want. Somoene else can handle the more intimate duties. I am now enjoying whatever time we have left. You know, I'm even thinking about hiring help so I can take her on more outings. Just need to remember not to go broke. I will be around long after she is, hopefully. And have a hard time making sure I do not overextend of myself or finances. Sound selfish?

[joelc]

If you go to my website and on the main page click on Resources. Then on the right side as you scroll down you will see a section for BC only. It lists resources that we have used to get help.

For the panic attacks, is it because of breathing issues? A bipap sounds like it could help.

[LornaDoone]

After speaking with the Dr about her breathing issues, they still did not mention the bipap. And she is quite resistant to getting one at this time, that during appointments, she is not totally truthful. I can't really fault her for this. She's a grownup and can make her own decisions. I can encourage, but ultimately I need to realize it's not my body. I have spoken to her case worker and they do make well visits on occasion. They make recommendations and encourage where necessary. Not always successful, but always try. Her ALS team really is quite remarkable. I love them.

[Laurie Staller]

Hi Mandolyn....just wanted to let you know that it sounds like your pals is having the same type of breathing difficulty as my sister. Breathing seems to be getting worse....especially when sleeping. At first we thought it was anxiety, but as time went on, it only got worse. She is already on ativan for anxiety....and breathing is still not good, so doctors have come to the conclusion, that it isn't anxiety. She is on a puffer...hasn't been offered a bipap...although, like your pals, probably would not go that route right now anyway. We have my sister's bed elevated as high as we can, and that seems to have helped her breathing. Just wanted to let you know that at my sister's doctors appointment, she isn't always truthful either and doesn't put forth all the details that she should. I think she is still in denial and quite scared....maybe your pals feels the same way. The way we all get through this is "taking it....one day at a time"......hugs.....Laurie

[joelc]

Why are they against a bipap? It would make life so much better! I don't understand the hesitation. It is something to be endorsed, not feared.

[Laurie Staller]

Hi Joel....I think the reason my sister is against it, is because she is still in denial. For her, accepting the bipap, would be accepting her circumstances...don't think she's ready to do that yet. Once she realizes this isn't going to go away, then maybe she will be more open to the bipap and all the other aids that could give her increased comfort. I hope for her sake, and her families, she will eventually do what's best for her.

[joelc]

Denial can be very detrimental. I know from experience as my wife still likes to live in denial which causes me some stressful times. I hope your sister soon accepts what happening because she could be a lot more comfortable if she agrees to getting some devices to help her. I don't consider my vent or wheelchair to be my enemy, quite the opposite as they gave me my life back. Here is an excerpt from my website.

"The effects of the vent on my health - oxygen levels that prevent headaches and give me energy, stamina, appetite, and pink cheeks - are equaled by improvements in my quality of life. My days are no longer dominated by shortness of breath, tiredness, and fear of the next episode of lung congestion.

My world has re-expanded along with my lungs. The BiPAP was fine for relieving nighttime breathing problems, but as my daytime use of it increased, my world shrank. Even if the BiPAP machine had fit on my wheelchair, the mask and headgear were too bizarre-looking for me to want to go out. As a result I seldom went outside, much less left home."

This is talking about my trache and vent. But, it can also apply to a bipap because once it is needed it has the same affect of improving quality of life.

[Katie C]

Laurie.. just curious.. has your sister been evaluated for dementia? If she is consistently misrepresenting her symptoms to the doctor and refusing treatments or diagnosis.. it might be worth looking into. Glen actually used his bipap at first but as his dementia worsened, he refused to use it. It's frustrating but part of the syndrome. Symptoms can be controlled, at least for a while, so it might be worth asking the doctor. In the meantime, it's imperative that someone go with her to her neuro appointments to bring things up that she won't.

[LornaDoone]

Why are they against a bipap? It would make life so much better! I don't understand the hesitation. It is something to be endorsed, not feared.

My PALS says she's not interested. However, she has just scheduled PEG surgery, although insists she will not use it. As her symptoms worsen, I have a feeling she'll go with more medical assistance than she initially thought.

She would like to die as peacefully as possible without mechanical help. She will take medications to help keep her as comfortable as possible.

[Laurie Staller]

Ah.....I know it's hard, but we have to let our PALS make their own decisions regarding their care....we can suggest, but ultimately...the final word is theirs. Respecting these decisions no matter how difficult shows just how much we care.....hugs....Laurie

[Laurie Staller]

Hi Katie.....my sister just had an evaluation with 3 different doctors present. Between myself and her husband, there is always someone with her at her apppointments. I do notice my sister repeating herself and getting mixed up about things....but you would think the doctors would detect this. They did however, measure my sister's oxygen level, and it was still quite good. They can't understand why she's having so much trouble breathing. Maybe that's why they didn't offer her a bipap? Could there be another reason other than oxygen and anxiety that could cause breathing issues?
......hugs......Laurie

[Miss]

Laurie,

Did they measure your sister's pulse/oxygen level or her blood/oxygen level? Do you know what he FVC (forced vital capacity) is? This is a very basic measurement of lung function. It would be anywhere from 0 - 100%. (100 being the best)

[Katie C]

Besides pulse/ox they should be checking CO2 levels. This requires a blood draw but it's vital information as carbon dioxide buildup is a serious issue for PALS. I know Joel has some good info on his website about that. We kept a small pulse/ox reader for Glen, but mostly to check his heart rate, as I'm lousy at checking a pulse. As he grew weaker, his heart rate increased.

As far as going with your PALS to doc appointments.. if relaying information is not something your PALS is good at you really need to step in and insist that the docs listen to you. Yes with three docs you'd hope they pick up on things but they are not with your PALS on a day to day basisand really aren't going to be able to tell as well as you can when something has changed or might need further intervention.

[Laurie Staller]

Thanks everyone.....I'm heading off to Joel's website.....sounds like there is a wealth of information there.....very much appreciated Joel!.......Laurie xo

[Pepper]

My husband's oxygen level is around 89. There is a breathing test which is called - negative something. That one is around 20. He refuses to use both bipap or oxygen. He can breathe fine, he told the nurse.

One night he had a panic attack lasting 5 hours. I have never experienced it and thought he was dying. I called hospice. The nurse came that morning and hinted about how to calm down panic attack. The social worker taught us some methods also.

I learn a lot reading from here and would tell the nurse devices I read about here, one being suction machine. She is very helpful and gets us those she is able to.

I contacted Als support when he needs speech devise and it is not something hospice can provide us with. My husband has been brave about not being able to eat. Unable to talk is getting to him. He cries daily, feeling miserable.

The personnel from Als asked me if he knows what he has. I told her - he knows the name but not what it is and he does not want to know what it is. I explain it to him and use this site - so he would not feel he is alone in it. I asked him several times if he wants to read this forum. He does not. I am looking forward to her visit. She sounds so nice over the phone.