Autism and Health Problems

[Autoktovia]

Hello! My name is Haley and I'm new here. I apologize if anything I say is offensive. This is mostly a rant, but I'm hoping someone relates. Maybe we can all feel less alone.

I'm 23 (24 on May 29th) and I got diagnosed with autism a month before my 22nd birthday. I have also been diagnosed with POTS and migraines. I'm seeing a psychologist next week who is going to look into me possibly having bipolar disorder as well.

Most of the time I feel like I'm 90% there. I handle things around the house pretty well; in most aspects of my life I do fine. It just bothers me that I can't hold a job. Between getting overwelmed and having meltdowns, and chronic medical problems, I can't keep up with it. It has gotten to the point that I can't even think about applying for a job without having a meltdown. So even though I'm 90% there, it's not enough for me to be fully independent and sometimes that bothers me. I think very logically. Logically, I know that having a job is something I should be able to do. I know that my reactions aren't always reasonable. But wether the reaction is reasonable or not, it isn't something I can control and then my brain fights itself.

I have high-functioning autism. It makes it hard for the people around me to understand why I can't do certain things, especially my parents. They try to be supportive, but it always comes off as them implying that I'm making the choice to not work and I'm not trying. Sometimes it gets to me and makes me question myself.

It's very lonely sometimes. I'm usually stuck at my house, and then when I do get to talk to people I feel like they don't fully understand where I'm coming from.

Hopefully someone can relate. I appreciate any and all advice. Thank you for reading my post.

 

[Raggamuffin]

Triptans were a Godsend for me when I got migraines. but after I stopped drinking I stopped getting migraines.

Mind body connection. Stressed mind leads to a stressed body.

I'm on my 11th year of daily aches, pains and symptoms due to stress. And ADHD and Autism add to Anxiety and Depression. Supposedly a lot of unresolved trauma too, which has been triggered no end since returning back home to my parents.

I get what you mean about the loneliness and being stuck at your house. It's difficult. I try to take time out to be in nature where possible. Walking too. Self-care where I can, but it's hard. Things go very up and down.

Ed

 

[Autoktovia]

I might have to look into that. I'm 2 years sober and so far it hasn't helped the migraine situation. Usually stresses causes the headaches, but I get dizziness that I've been told is also migraines. The dizziness seems to be pretty random.

I'm sure that's probably a major part of it. I tend to worry about things too much.

I'm sorry that moving back in with your parents has made things worse. I have a lot of unresolved trauma and a lot of it involves my parents. I can understand how that would make things a lot harder to deal with.

I appreciate having someone relate, although I'm sorry that you do. Self care is hard, especially when things are already harder than normal. I'll have to try getting out in nature more. That sounds like a really good idea.

 

[tazz]

@Autoktovia
That's a very clear explanation and I can totally relate to it, especially the bit about HFA and it being hard for people to understand why I can't do certain things. And perhaps hard for people to understand why I can sometimes do things that make me seem very capable, but then other times I can't do them and they don't get why.

No advice yet, I'll give it some thought. Just wanted to say you're certainly not alone in this.

 

[tazz]

Oh - migraines. Used to get them a lot. Eventually worked out that bright non-diffused lights above my head were causing them. Avoiding those and/or wearing a cap has pretty much sorted that out. Also making sure that if I happen to get caught out and some lights make me dizzy, then I go lie in a dark place for an hour before the migraine sets in and that seems to work. Different for everyone of course.

 

[Raggamuffin]

Dr Gabor Maté specialises in trauma, addiction, stress and healing from them.

Many videos on Youtube. Podcasts, audiobooks and ebooks of his many publications.

"The Myth of Normal" is his latest. Worth a read.

Ed

 

[Autoktovia]

Oh - migraines. Used to get them a lot. Eventually worked out that bright non-diffused lights above my head were causing them. Avoiding those and/or wearing a cap has pretty much sorted that out. Also making sure that if I happen to get caught out and some lights make me dizzy, then I go lie in a dark place for an hour before the migraine sets in and that seems to work. Different for everyone of course.

I appreciate it. It's nice being able to talk to people who understand. HFA is hard, I don't fully understand it myself sometimes. Some days I'm fine, but other days I can't do things that I normally can. Just depends on the day and I don't know how to explain it to the people around me because I don't know why it happens either.

Stress causes the headache part of my migraines but I haven't figured out the dizziness yet. It almost always happens while I'm sleeping. I wake up to the room spinning, it lasts a few days to a few weeks, and then it just stops. I got annoyed so I started doing things anyway despite the dizziness. I might have to try what you mentioned and just take some time to relax without any lights or other stimulation.

I appreciate the replies!

 

[Tom]

What you describe reminds me of many things I have experienced or read others share in the 10+ years i've spent exclusively on forums for people on the spectrum. But no one has exactly the same combinations with the same personality so there is always some uniquness to the struggles. There have been many conversations on various things like meltdowns, and medical conditions. If you search you may find a variety of approaches to consider and try in addition to what comes up in new conversations.

It is difficult coping with problems invisable to others. My own experience is that progress came with a mixture of professional help, medications, and self initiated changes.

 

[Neonatal RRT]

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.

 

[Rodafina]

@Autoktovia
It sounds like you are getting some great advice from those above, and hopefully you are finding solace in the fact that other people can understand.

My suggestion is a very very simple one. It was helpful to me to start working part time. I was able to find a job that I really enjoy and has exactly enough human interaction, but not too much. It can be difficult to make ends meet with part-time work, but the trade-off is enormous.

Simply having a good portion of the day to rest and recharge and get ready for the next day has made a huge improvement in my quality of life. Four hours a day seems good for me and I have made changes in how I spend my money to accommodate part-time work.

 

[DaisyRose]

Hello Haley, it’s nice to meet you. It’s crazy because I was also diagnosed last year before a month before my birthday. That’s such a coincidence! I hope you have a great time here and are able to share your experiences with everyone else.

 

[SusanLR]

Stress causes the headache part of my migraines but I haven't figured out the dizziness yet. It almost always happens while I'm sleeping. I wake up to the room spinning, it lasts a few days to a few weeks, and then it just stops.

I have the exact same type of dizziness.
It is usually associated with anxiety and stress with me.
I went to an ENT doctor and had audio-vestibular testing.
He said it was Meniere's disease and stress is one of the major triggers to cause this dizziness. Sleeping through it for most of a day is the only thing I've found that helps it go away sooner. The room spinning dizziness is called vertigo.
Do you have tinnitus also? High pitched ringing in ears?
I get brain fog with it too.

Talking with an Ear, nose and throat, ENT doctor is a good place to start.
I know it is hard to function with vertigo. Good luck with that.
And welcome to the forum!

 

[Crossbreed]

I appreciate any and all advice.

(I hope this helps...)
https://autlanders.blogspot.com/2019/07/finding-support-resources-in-usa.html

 

[Patrick Bushdiecker]

Hello! My name is Haley and I'm new here. I apologize if anything I say is offensive. This is mostly a rant, but I'm hoping someone relates. Maybe we can all feel less alone.

I'm 23 (24 on May 29th) and I got diagnosed with autism a month before my 22nd birthday. I have also been diagnosed with POTS and migraines. I'm seeing a psychologist next week who is going to look into me possibly having bipolar disorder as well.

Most of the time I feel like I'm 90% there. I handle things around the house pretty well; in most aspects of my life I do fine. It just bothers me that I can't hold a job. Between getting overwelmed and having meltdowns, and chronic medical problems, I can't keep up with it. It has gotten to the point that I can't even think about applying for a job without having a meltdown. So even though I'm 90% there, it's not enough for me to be fully independent and sometimes that bothers me. I think very logically. Logically, I know that having a job is something I should be able to do. I know that my reactions aren't always reasonable. But wether the reaction is reasonable or not, it isn't something I can control and then my brain fights itself.

I have high-functioning autism. It makes it hard for the people around me to understand why I can't do certain things, especially my parents. They try to be supportive, but it always comes off as them implying that I'm making the choice to not work and I'm not trying. Sometimes it gets to me and makes me question myself.

It's very lonely sometimes. I'm usually stuck at my house, and then when I do get to talk to people I feel like they don't fully understand where I'm coming from.

Hopefully someone can relate. I appreciate any and all advice. Thank you for reading my post.

Hi. I have never been able to keep a job long. When my boss tells me I'm doing a good job, I think think, "yeah everyone says that at first, but they are only seeing the performance, they can't see what's going on inside every moment when I feel like my head's about to explode. Eventually they get tired of the other things I do and get rid of me.

It's like this constant state of starting over. I just want stability. My mom kicked me out when I was 25 because she said I was lazy and wouldn't get a job. I had already had and lost so many jobs that I was very discouraged. I gave up and stop trying. The cops came and told me I had to leave a few days before Thanksgiving and I spent Thanksgiving in a homeless shelter. From there I went and got two jobs, and lost both of them and on and on in and out of jail and prison, 2 years on the streets of downtown St Louis sleeping outside and in abandoned buildings.

Now age 36, a mental health counselor I am working with suggests I am autistic. What? Seriously? I am working on getting a diagnosis and then I will apply for disability. My goal is to never be homeless again. It sucks. I was on drugs and alcohol. You name it I've done it. I am now sober and living in a sober living house. It is still hard to go to work and I still have problems every freaking day.

The important thing is to never give up. Keep trying. You are not hopeless. Things will get better for you. Encourage yourself if nobody else will. My job is just a 10-minute walk away from my house. When I'm done working, I come home, take a shower, I pretty much stay in the house, in my room unless I need to eat drink or use the bathroom or leave to get supplies. I am using this site to interact with others and learn. Hopefully this is helpful. I would like to get to the point where I am useful to others. I hope this helps you in some way.

 

[Crossbreed]

I had already had and lost so many jobs that I was very discouraged. I gave up and stop trying.

BTDT

 

[MC1Rcat]

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.

 

[Autoktovia]

I have the exact same type of dizziness.
It is usually associated with anxiety and stress with me.
I went to an ENT doctor and had audio-vestibular testing.
He said it was Meniere's disease and stress is one of the major triggers to cause this dizziness. Sleeping through it for most of a day is the only thing I've found that helps it go away sooner. The room spinning dizziness is called vertigo.
Do you have tinnitus also? High pitched ringing in ears?
I get brain fog with it too.

Talking with an Ear, nose and throat, ENT doctor is a good place to start.
I know it is hard to function with vertigo. Good luck with that.
And welcome to the forum!

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!

 

[Autoktovia]

Hi. I have never been able to keep a job long. When my boss tells me I'm doing a good job, I think think, "yeah everyone says that at first, but they are only seeing the performance, they can't see what's going on inside every moment when I feel like my head's about to explode. Eventually they get tired of the other things I do and get rid of me.

It's like this constant state of starting over. I just want stability. My mom kicked me out when I was 25 because she said I was lazy and wouldn't get a job. I had already had and lost so many jobs that I was very discouraged. I gave up and stop trying. The cops came and told me I had to leave a few days before Thanksgiving and I spent Thanksgiving in a homeless shelter. From there I went and got two jobs, and lost both of them and on and on in and out of jail and prison, 2 years on the streets of downtown St Louis sleeping outside and in abandoned buildings.

Now age 36, a mental health counselor I am working with suggests I am autistic. What? Seriously? I am working on getting a diagnosis and then I will apply for disability. My goal is to never be homeless again. It sucks. I was on drugs and alcohol. You name it I've done it. I am now sober and living in a sober living house. It is still hard to go to work and I still have problems every freaking day.

The important thing is to never give up. Keep trying. You are not hopeless. Things will get better for you. Encourage yourself if nobody else will. My job is just a 10-minute walk away from my house. When I'm done working, I come home, take a shower, I pretty much stay in the house, in my room unless I need to eat drink or use the bathroom or leave to get supplies. I am using this site to interact with others and learn. Hopefully this is helpful. I would like to get to the point where I am useful to others. I hope this helps you in some way.

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.

 

[Autoktovia]

Hello everyone!

I appreciate all the replies and positive feedback to my post!

I was offline last week, so it may take me a bit to catch up on replying, but I do plan to respond to everyone.

I'm super clumsy, I have a lot of issues with balance and moving around without crashing into things lol. I fell down my stairs and it was bad. I hit the wall at the bottom hard enough to chip my tooth. I got pretty beat up, so I've been stuck in bed for most of last week. I don't have health insurance, so here's to hoping I didn't mess myself up too bad.

I'm still having issues with brain fog, I think I had a concussion. Everything else is better, though!

 

[Bolletje]

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.