Autism and Health Problems

[Patrick Bushdiecker]

I appreciate the response, sorry for the late reply. I had a lot come up this past week.

I feel that on the jobs. Most of my bosses have liked me. I do everything I should when I'm there, I just end up missing a ton of work and then I get to anxious to go back because I'm afraid they'll fire me. I get burnt out and then I can't go without having meltdowns.

I'm sorry you went through that, that sounds like a horrible experience. I've never been homeless or in jail. I have been court ordered into the state mental hospital and that was a traumatic experience, I can't even imagine how traumatic jail and prison was. I got kicked out when I was 19. The only reason I'm not homeless is because I have 2 people outside of my family that help support me. I appreciate that they do it, but I hate relying on other people.

I thought I may have been on the spectrum before they told me, so it wasn't much of a shock. That had to have been crazy to hear at 36. Hopefully you can figure it out, it definitely makes a lot of things make sense once you get the diagnosis. I also struggled with drugs an alcohol, I've been sober for 2 years. I'm glad you are sober now, too.

I really appreciate it. I hope things get better for you as well. Living and maintaining things is hard. Seems like you've been through a lot already, hopefully those experiences have helped you in some way. I know with everything I went through, everything I'm going through now seems like it's easier. It's still hard, but it's better than where I was.

 

[Patrick Bushdiecker]

Thank you for responding. Everything's going to be good

 

[Autoktovia]

First of all, welcome.

It sounds like you need to get a few things sorted out with symptom management, but the other thing is, from a personal development, independence, and income standpoint, education and employment is going to be critical. I would explore your options with regards to jobs that you can do from home. For example, I am in the medical field, and I know former teammates that have gotten out of the inpatient world and now work for insurance companies, medical supply companies, medical records, and other related areas that the employer will pay for the high-speed internet connection and computer and have you work from home. I am quite sure, other fields have folks that work from home, as well. When I say this, to be more specific, don't sell yourself short by trying to do a "small home business" that will only supplement income. I am talking about a legitimate, well-paying job with benefits.

Not all of us can deal with people, face-to-face, with complaints and emotions, the masking we have to do, etc. but something a bit "separated" is often manageable. Migraines can be awful. My wife has tried every experimental drug on the market, and not on the market, and still no relief, MRI changes, blurred vision, aura, "the whole spectrum", but she fights through it as an RN running an outpatient clinic. I don't know how she does it. That said, if you are at home, comfortable, in a more relaxed environment, sitting in front of a company computer may be more for you.

Something to consider.

I appreciate the response.

I'm not super familiar with what causes me to burn out or have meltdowns, so it may not even be the job itself causing it. I'm at the point where I'm not really sure how to move forward. I tried applying for at home jobs. I couldn't even make it to the point of applying without having a meltdown.

I did apply for financial aid for college. The degree I want takes 8 years. I'm hoping by the time I make it through school I'll be doing well enough that I can hold a job.

I'm sorry to hear about your wife. Migraines are hard to deal with, especially when nothing helps.

 

[Autoktovia]

I’ve been diagnosed with ASD, ADHD and bipolar disorder too. In retrospect, it seems that a lot of episodes that were attributed to my bipolar disorder were most likely caused by me not being able to regulate my ASD/ADHD properly.

I ended up getting diagnosed with Bipolar. I think not being able to regulate my ASD is also what set mine off. Too many things changed at once and it sent me into an episode.

 

[Autoktovia]

Hi Haley,

Thank you for sharing your experience. You are not alone. There is a high correlation between ASD and migraine and a moderate correlation between ASD and dysautonomias. Migraines are technically a form of autonomic dysfunction as well. I am sure there are a lot of people out there with the same combination as you. I happen to be one of them. I have vestibular migraine. When I get migraine attacks, I don't get headaches very often, but I get really dizzy, nausea, brain fog, tachycardia, slurred speech, neck pain, ataxia and other weird neurological symptoms. I also have a form of dysautonomia. I don't have POTS. I have orthostatic hypotension that often comes on after standing, or sitting with my feet on the floor, for more than 15 minutes. My blood pressure goes down to the high 70s or low 80s over 50 and I feel very faint. I have to either lay down or sit with my legs stretched out above waist level for my blood pressure to normalize.

I have lived with the migraines for 15 years and have been taking a beta blocker called Nadolol (generic for Corgard) that has helped me to function well enough to work, etc. It reduces the heart rate and helps reduce how easily I am triggered for migraines. Have you ever tried preventative medications for your migraines? Beta blockers are also prescribed for some forms of dysautonomia. I am not sure if they help with POTS.

I started having problems with my blood pressure a year ago, and through the process of elimination and seeing a lot of specialists, I was diagnosed with dysautonomia last summer. I am currently waiting till October to see a doctor who specializes in just autonomic nervous system problems, so that I can find out if there is an effective treatment that will allow me to get back to a more normal life. Eating tons of salt and water or wearing compression stockings is not enough to keep me functional all of the time. So, like you, I am at home a lot. I work part time doing research, so my schedule is a little flexible, but I often have to really push myself to go to work, or the store, or wherever else I need to go just to take care of daily life.

I live in Brooklyn, NY, so I go everywhere by walking or the subway, usually by myself. I am frequently dizzy and/ or lightheaded and am afraid I will pass out while I am out of the house and hit my head or become badly injured. I have been recently wondering if I should really be doing that so much. How hard should we really be expected to push ourselves? Is risking our health or our lives really the right choice? My primary care doctor told me this past summer that I should apply for disability. But, I have not done that yet. I have been trying to hold out for finding a solution to the problem. It has just taken a really long time to find a doctor specializing in dysautonomia who accepts my health insurance. I have had a lot of meltdowns in the process and have become really burned out lately. It is too hard to keep pushing through the migraines and the dysautonomia.. and having ASD on top of it all makes it harder.

I decided last week that it is probably in my best interest to apply for disability, even if it is just temporary, because I cannot work more than 2 days a week and need to be able to afford rent, food etc. I recently had an argument with my mom, who is against my applying for disability. She (and the rest of my family) does not live in NY and does not see everything I have to go through and how exhausting it is just to get the daily basics of life taken care of. She thinks I am giving up and is trying to discourage me from doing it. Other members of my family don't seem to get it either. When I talk to them they offer supportive words but seem incredulous and really distant. It's almost as if they don't really believe the symptoms/ situation I describe to them are real.

People who do not experience the same things cannot understand the sheer willpower that is required just to get through a day sometimes. Most people don't understand that you are very sick because you "look okay". They think you are fine and should be able to be okay outside of the house, if you seem okay when you are at home and can rest and take breaks whenever you need to. I think that in my case It is also difficult because I have been pushing through the migraines for a long time, so people expect me to just keep going on like that forever, even if new health problems have come up. I know that this is something I expect of myself for the same reason.

However, it led to a breakdown. Luckily, someone I had a meltdown over the phone with at my insurance company decided to refer me for mental health services and they had someone call me to arrange for psychotherapy. This is helping me to realize that it isn't a good idea to push myself so hard right now and that it may lead to further problems if I continue on like that. I think that it is important for us to take care of ourselves, even if other people don't understand or fully support our choices.

Thank you for the response!

I'm sorry you have had to go through all of that.

I relate to what you went through with your mom and I definitely think looking into disability, even temporarily, would probably be a good idea. Especially if you're worried about your health and not being able to pay for the things that you need.

My family lives in town, but I'm only close to my parents. I have a hard time letting my gaurd down around them so they don't see the things I go through. Whenever they have in the past they immediately tried to send me to the hospital and thought I was overreacting. I've tried to explain it to them. They act like they understand, but then they say things that make me feel like they don't get it. I think they just think I'm being lazy or dramatic.

I definitely agree with not pushing yourself too hard. Sometimes I feel like I have to to keep up with everyone else, but it hurts me more than it helps me most of the time.

 

[MC1Rcat]

Hey! Sorry for the late reply, I had a lot of stuff come up this past week.

I thought it might be Meniere's disease. I went to an ENT and he told me it wasn't vertigo and referred me to a neurologist. It's definitely possible that he was wrong, I'll have to keep looking into it. I stop breathing in my sleep, I'm pretty sure I have sleep apnea. I had a sleep study done and it didn't show anything, but it was an at home study and it didn't seem like it was a quality test. I thought that maybe if it was sleep apnea I could be losing oxygen to my brain at night, and maybe that was triggering it.

I do get tinnitus and brain fog as well. The tinnitus isn't usually associated with the dizziness, but the brain fog definitely is.

I appreciate the response!

Both the brain fog and dizziness can be from migraine. It can also be from not enough oxygen to the brain...like with low blood pressure. I am not sure if POTS would cause less oxygen to the brain. Does your blood pressure ever go too low? If there are any near you, you might want to see an otoneurologist. They specialize in ear problems and other problems that affect the vestibular system and cause dizziness. They would be able to determine if you have Meniere's or migraine or dysautonomia causing the problem. They can also often treat all of these things. I hope you can get some answers for what causes your symptoms....and an effective treatment