SCARY. Response to another thread but deserves a new thread

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skibum
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07 May 2020, 6:33 pm

In another thread a poster was asking if what s/he was experiencing was arrogance or overload. I responded there and said that I had similar issues and that they have now started to affect my breathing so severely at times that I was going to call the doctor to see if I could qualify for supplemental oxygen to help me during these flare ups.

I explained to the doctor what was happening. I told her that I believe that I am having physical manifestations to neurological overload. This is not anxiety attacks before anyone starts down that path. This is very different. I also explained to her that some of my other Autistic friends have similar issues which is true. These are people that I know IRL so please don't go telling me that I have not spoken to these people at length about this since I did not speak to them here on WP. But when I was explaining all this to the doctor and telling her specifically what is happening and why I believe it is happening, she agreed that I am right in my understanding. She also said that it can potentially be very severe and that I should be able to have access to oxygen or an air flow machine like a CPAP machine so that I can get through these flare ups and do the physical therapy at home that I need to do to help me. I have a physical disability that can hinder my breathing as well and I have to do PT for it. But if I am so constantly overwhelmed and being knocked down by car stereos and overwhelming conversational attacks by nts and people who do not understand me, it is very difficult for me to function well enough to do the pt that I need because I am so overwhelmed. So a CPAP machine or oxygen would help to give me that extra boost so that I might be able to breathe well enough to do some pt.

But she said that because this is Autism related, there is no actual code for this so it is most likely that I will not be allowed to have a CPAP machine or oxygen to help me when I need it. And she said that this is severe enough that when it happens I should go to the ER to get checked and make sure that it is not causing heart damage or a heart attack or something like that. But I told her that when I have gone to the ER in that past for this, they don't find anything and they just send me home because my body compensates so well so the O2 levels are always at 98 and the EKG and chest xrays show nothing. But she said that just the fact that I am getting to the point of almost passing out from trying to breathe is severe and I have to make sure that I am not actually having a heart attack. My physical disability makes it hard for me to breathe already so this issue just makes it that much harder. This is also not asthma or seasonal allergies or anything like that. I know. I have been tested and previously medicated for all those things over my life span. It is also not corona virus or covid 19. I was tested for those in my last flare up a couple weeks ago.

But I explained to her that I often get bullied in the ERs and get labelled a faker and a malingerer because the only tests they run don't show anything. In fact, I was bullied so badly one time because they did not understand my Autistic symptoms that they bullied me so harshly that I became catatonic. Then they threatened to arrest me for being catatonic on charges that I was refusing to leave the premises after discharge and thus I was trespassing on hospital grounds and that I was refusing to talk to them. I was literally frozen in full catatonia in mid step. But they decided that I had to be faking so I had to be arrested.

When I explained this to the doctor, she said that yes, they will probably call me a faker and malingerer and they might even bully me but I should still go and get checked out because it is important to know if I am having a heart attack or a stroke and if they bully me and call me a faker and a malingerer I just have to be the bigger person and just accept that they don't understand Autism.

She said she will do what she can to see if there is any way that I can qualify for supplemental oxygen or a CPAP machine because she feels that I am absolutely right in my assessment of what is happening and she thinks it is very important that I have that as a help available to me when I need it because this could potentially be life threatening. But I will just have to understand if it can't be approved because it's an Autism issue that people are not familiar with and so there is no code for it. And when this happens I should go to the ER and get checked even if they bully because if I end up having a stroke or if my heart stops at least they will be able to revive me.

I am not even sure what I should feel about this. Any suggestions on what the appropriate way to feel about this is?


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Mountain Goat
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07 May 2020, 7:30 pm

I don't know how to respond except to maybe ask for the doctor you saw to put something in writing, and then go and see the ones in charge of the hospital and show them the letter, and ask to speak to some of the staff to explain things? Obviously you need to do this on a day that you are calm ans not in any distress. (Not an easy thing to do).
I want to ask you about the breathing bit. I sometimes get times when my throat closes up and my nose starts to close and it could be stress related. I have been fortunate so far. It also seems to happen after I habe had exces stomach acid. I actually have it now (Excess stomache acid) but as we are on lockdown, I cant see a doctor to get a prescription for tablets to ease this, as my local doctors surgery is shut, and one has to phone, which I am told is hours of phoning (Brother has recently had to do it), and as the only phone option is my Mums mobile with only about 100 minutes a month, being held for over an hour in a phone queue is not an option.
But anyway. I know that during the times I have breathing difficulty I am in panic and stressed. (I find that often I am not always in touch with my feelings, so I dont realize I have anxiety or stress until it is almost too late... Often I only realized I am stressed when someone else who really knows ms asks me why I am so stressed... Only then I realize I was stressed!)

I don't know if it is the same as what you get, but I know that I have become so breathless with shallow breathing etc and my heart feels like it will burst etc.. And I then go dizzy for a while... Not sure if that is the same? It maybe different.


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07 May 2020, 7:37 pm

Sorry. I feel guilty if what I experience is not the same as I don't want to make it seem like your experience is not horrific.


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07 May 2020, 7:44 pm

To Mountain Goat:

I am hoping that it doesn't resort having letters written to the hospital but if we have to I will have my social worker help me with that. Thank you for that advice.

I have had reflux since I was born. From what I have learned, a lot of Autistic people have these kinds of digestive issues. I know also that breathing can greatly be affected by panic attacks. That is very common and it could be what you are experiencing.

I also have genetic hypertonia which is a neuromuscular issue that we believe is related by the Autism and could possibly be caused by it. That is what my doctors and neurologist are thinking. This condition affects my muscles and makes them tighten to the point where I can be asphyxiated and where my rib cage cannot expand properly among other things in my body. That is why I have to do pt all the time. My doctors are not sure what is causing this because there is not a lot of research in it yet. But we do know that it is not directly related to anxiety in my case. We are finding that it is more prominent when I am fatigued and neurologically exhausted even though it can happen anytime. It has been suggested that it could be similar to a Parkinson's issue where wrong messages are being sent to the muscles causing them them to contract when they should not be contracting.

It would be helpful for you to keep a journal and keep track of when this is happening and see if you can discover a pattern.


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07 May 2020, 7:46 pm

Mountain Goat wrote:
Sorry. I feel guilty if what I experience is not the same as I don't want to make it seem like your experience is not horrific.
Please, my dear friend, do not feel guilty at all. There is no reason to feel that way. Each person's experience is equally valid. Your experience may not be the same but it is just as important and it does not in any way take away from mine. I hope to be able to help you learn more about yours and I am so glad that you are sharing it.


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07 May 2020, 7:47 pm

Mountain Goat wrote:
I don't know how to respond except to maybe ask for the doctor you saw to put something in writing, and then go and see the ones in charge of the hospital and show them the letter, and ask to speak to some of the staff to explain things? Obviously you need to do this on a day that you are calm ans not in any distress. (Not an easy thing to do).

I am thinking the same thing. If it is possible for the doc to put a note in your medical records so it comes up on their computers when you go to the ER.

If not you just should follow the doc's practical lesser of two evils advice.

You are going to feel about the situations what your autistic brain needs you to feel. That said you have every right to feel angry and frustrated.


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07 May 2020, 7:49 pm

ASPartOfMe wrote:
Mountain Goat wrote:
I don't know how to respond except to maybe ask for the doctor you saw to put something in writing, and then go and see the ones in charge of the hospital and show them the letter, and ask to speak to some of the staff to explain things? Obviously you need to do this on a day that you are calm ans not in any distress. (Not an easy thing to do).

I am thinking the same thing. If it is possible for the doc to put a note in your medical records so it comes up on their computers when you go to the ER.

If not you just should follow the doc's practical lesser of two evils advice.

You are going to feel about the situations what your autistic brain needs you to feel. That said you have every right to feel angry and frustrated.
Thank you so much. Yes, it would be very good for it to be in the record. Thank you for validating the anger and the frustration. I do feel both of those feelings about this.


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07 May 2020, 7:49 pm

I didn't exactly know what was causing it before as it started happening a few years ago. It was before I knew anything about autism. But looking back I was stressed.


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07 May 2020, 7:55 pm

Mountain Goat wrote:
I didn't exactly know what was causing it before as it started happening a few years ago. It was before I knew anything about autism. But looking back I was stressed.
That is very likely. It is a common stress response for many people. Are you able to reverse it through deep breathing and just slowing down?


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07 May 2020, 7:58 pm

Mountain Goat wrote:
I don't know how to respond except to maybe ask for the doctor you saw to put something in writing ...


YES -- great advice. I would also get your doctor to help recommend agencies that might provide equipment for Autistic people (or any people in need).

skibum,
I know you have a very difficult time in hospitals and we've discussed our shared issues with that regard. I was just wondering if you've even done a respiratory sleep study? I know it's not necessarily related, but it would be very ... convenient ... if they discovered you need a CPAP machine. The tests are run by Respirologist MDs and even if you don't end up having a diagnosis of Apnea or UARS you will have that opportunity to talk to the Respirologist who has studied your neurological pathways in response to breathing. I think I told you that the nurses at my sleep study suggested I was schizophrenic because I had a meltdown during the process. The Respirologist clarified that I was NOT schizophrenic but suffered from sensory and sleep disorders.

My point is that the doctor was very empathetic about my meltdown, and I hadn't expected so much compassion in that situation. I hope you could have the same experience where your (possible) meltdown is mitigated by a Respirology doctor who understands meltdowns (e.g., children who refuse to go to bed, people with night terrors, sensory disorders, etc.) Then you will have the added bonus of telling him / her about your respiratory issues from autistic stress. All the better if your GP refers you, and also writes a letter that you can share during your appointment.

I did get a CPAP machine because I have apnea, but I can't tolerate it when I sleep because of the sensory overload. When I went for followup with the Respirologist and told him I couldn't handle the CPAP he was understanding and said I should keep it regardless. Now I use it in situations like you describe, when I'm hyperventilating or overstressed but not sleeping. I used it recently because I had pneumonia and it helped me to breathe (again, not sleeping).

I'm not familiar with the US system but have you checked online classified? I'm sure some people might sell theirs privately if they aren't using them anymore.



Last edited by IsabellaLinton on 07 May 2020, 8:05 pm, edited 1 time in total.

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07 May 2020, 8:00 pm

skibum wrote:
Mountain Goat wrote:
I didn't exactly know what was causing it before as it started happening a few years ago. It was before I knew anything about autism. But looking back I was stressed.
That is very likely. It is a common stress response for many people. Are you able to reverse it through deep breathing and just slowing down?

Deep breathing does not work at all. It makes me dizzy and ready to collapse. The only relief that worked, was to go outside (Nearly always was worse at night) and breath the cold air, and while driving to the hospital in the car, having the windows open so I could grasp air in. They wanted me to phone for an ambulance, but I could not breath in warm air and an ambulance would take ages to get to me.


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07 May 2020, 8:09 pm

Isabella, that is also a great idea. Yes, you and I have had very similar hospital experiences. It can be really traumatic for us. I have talked about having a sleep study done and thought about it for quite a while because I sometimes wake up gasping and choking but I think it is because I suck my tongue pretty aggressively when I sleep. My GP and I were actually going to schedule it but he wanted to wait until I was completely cleared from my most recent concussion first so that the study would not have anything that could interfere with it but unfortunately the corona virus put a stop to all nonessential hospital procedures. I was also supposed to have a colonoscopy but that got indefinitely postponed as well. Hopefully once they are able to do these tests again, we can do the sleep study. I would be willing to look for a used cpap machine but I don't receive enough money from social security to pay for anything. I don't even break even with my bills. So buying something like that even used would be very difficult. But I will ask my social worker if we can look for grants or for charities that might be able to give me one. Thank you for the idea. That is super helpful.


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08 May 2020, 1:44 pm

I have an update about all this and I am becoming more infuriated at every pass. The afterwards on call doctor that I spoke to last night about this sent a message to my GP who is referring me to a behavioral therapist to deal with this issue. :roll: my phone won't open the extra emojis so I can't use the infuriated smiley so eye roll was the best I could do. I will just have to tell this ******* behavioral therapist to just talk directly to the neuropsychologist who has been seeing me for five and a half years, the trauma therapy psychologist who has been seeing me for two years, the new trauma psychoigist that I just started seeing since my regular one got another job and is leaving in two weeks, and my social worker who has been with me for over two years. Obviously none of these professionals know me intimately enough or are qualified enough so some new person who has never met me and who knows nothing about Autism and Autistic PTSD has to be brought in because the ONLY solution to this problem has to be to somehow change my behavior since it MUST be a behavioral issue and can't possibly be a neurological and physical issue. I cannot believe how dehumanizing this is.


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08 May 2020, 1:49 pm

skibum wrote:
I have an update about all this and I am becoming more infuriated at every pass. The afterwards on call doctor that I spoke to last night about this sent a message to my GP who is referring me to a behavioral therapist to deal with this issue. :roll: my phone won't open the extra emojis so I can't use the infuriated smiley so eye roll was the best I could do. I will just have to tell this ******* behavioral therapist to just talk directly to the neuropsychologist who has been seeing me for five and a half years, the trauma therapy psychologist who has been seeing me for two years, the new trauma psychoigist that I just started seeing since my regular one got another job and is leaving in two weeks, and my social worker who has been with me for over two years. Obviously none of these professionals know me intimately enough or are qualified enough so some new person who has never met me and who knows nothing about Autism and Autistic PTSD has to be brought in because the ONLY solution to this problem has to be to somehow change my behavior since it MUST be a behavioral issue and can't possibly be a neurological and physical issue. I cannot believe how dehumanizing this is.


Maybe they don't mean to imply it's a behavioural issue. It's possible they want you to get new ideas for strategies to try in the interim, as you wait for a sleep study which will solve everything.

(*Insert wishful thinking*) (*If not, make that be the deal*) (*Insist*) (*Go Fund Me for CPAP*)



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08 May 2020, 2:01 pm

What kind of strategies could they possibly be thinking of?


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08 May 2020, 2:02 pm

And why would they do a sleep study for this?


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