POTS and Autism

[elfinko]

Does anyone have experience with a dual diagnosis of POTS and Autism in a teenager? We have a 16 year old boy on the spectrum. He is verbal and high functioning. He  was diagnosed with POTS in late 2015 and we've seen increased violent meltdowns ever since the diagnosis that have resulted in half a dozen ER visits for psychiatric evaluation. The latest incident was 4 days ago. Early on he was prescribed Florinef and that seemed to help a lot with many of the symptoms (back pains, stomach pains and general exhaustion). He is still taking it, but lately a lot of the fatigue, stomach aches and headaches have begun to return.

I'm becoming increasingly convinced that the POTS symptoms are setting him off and he's just unable to verbalize the anxiety, so he acts out violently. It's like a switch goes off in his brain and he turns into a different person. This can last for 30 minutes. It can last for hours. He is able to speak, but he has a tough time being very specific about the discomfort and the prescribed Adavan doesn't seem to help him, which makes me think it's the POTS, since Adavan isn't going to address any of his POTS symptoms.

I'm not looking for any specific answers. Just trying to gain some insight into this dual diagnosis. Very frustrating to see your child suffer like this and mom is getting afraid to be alone with him lately.

 The POTS hit him like a ton of bricks. I've never seen such a drastic change in personality before. It was like he fell ill overnight. That quick.

[corina]

Hi elfinko, welcome to DINET. I'm so sorry this is happening to your son. I don't have any answers, hopefully someone else is able to shed some light into your situation.

[dancer65]

I am sorry I can't offer any advice or experience but just wanted to say welcome to the forum . This must be very distressing for you all , I hope you find some answers 

best wishes 

[MomtoGiuliana]

Welcome to the forum. POTS does come on suddenly for many patients.  I would imagine for someone with any communication or sensory challenges to begin with, it would be very hard.  Our symptoms can be very disturbing--for any patient.  It certainly can take time to adapt and learn to cope. 

Hope with time and the right meds, if needed, he will begin to feel a lot better.

[yogini]

I agree - I don't know much about autism, but I imagine POTS or any chronic illness might be harder to process or cause stress.  I would also look into the side effects/interactions of florinef and any other meds he's on.  I used to take florinef many years ago and seem to remember that it causes anxiety.

[elfinko]

Thank you yogini. He has an appointment with his cardiologist shortly. We'll ask about that.

Thank you everyone for the warm welcome

[DizzyGirls]

Don't know if this has anything to do with your son, but has he ever been checked for a Chiari malformation or craniocervical instability?  Is he hypermobile, by chance?  Like I said, don't know if he has any of these other symptoms, but the more research I do on Chiari and CCI, the more amazed I am.  Might be worth listening to a talk by Dr. Fraser Henderson.  He's the expert.  There's some on YouTube and Vimeo. 

[targs66]

Hi and welcome,

I would second yogini's comment about considering Florinef's side effects.  I know it is a very helpful medication for many people, but I felt very bad when I took it, even in very low doses.  I was agitated, shaky and nervous almost to the point of tears, and my insomnia was much worse.  My doctor was somewhat dismissive and said it "shouldn't " have those effects, but I tried taking it again and had the same reactions.

Just thought this info might be useful for you!  Of course his increased emotional problems may have nothing at all to do with the Florinef but it's just something else to consider.

 I wish you and your son the best and hope he's feeling better!

[Effiesue]

Thank you so much for posting this. My son is 12 and has High functioning autism and POTS. He was just diagnosed with the POTS and we have not yet started any meds for the pots. We are waiting to see the neurologist though we are on wait list. His mood has been horrific lately and I am not sure if it is because of the Pots or not. Separating the two issues is incredibly difficult. I believe I will get a fit bit for him to monitor his HE to see if there is a correlation. Please keep me posted on your son's health. 

[Jan]

I don't have Autism but when I was first diagnosed with POTS I had a terrible time with emotions, mood swings, severe sadness and anger. I am ashamed of some of the times I blew up at my young kids.  I started to give myself time outs when I felt the emotions coming on. It wasn't med related.  I don't know if it was psychological due to dealing with symptoms, or if was medical due to the illness but it got better and went away within the first year.  I did have severe feelings of anxiety which may have contributed to the emotional break downs, but the anxiety continued long after I stopped losing my temper.  I felt really bad after the emotions settled down. I would be exhausted after losing my temper.  It was difficult to describe what was happening to me. 

I don't have any advice other than maybe encourage him to take a time out when he feels it coming on and comfort him. I found the loss of control over my emotions to be really frightening.

 

 

[Pistol]

I am so very sorry to that you both are going through this. I agree with the posts - POTS symptoms are so difficult to endure AND to explain for people who can verbalize them, it must be very scary for your son and heartbreaking for you. I am wondering if a good specialist in autism might be able to help with the outbreaks. The POTS symptoms generally take a long time to get under control but could someone with experience in autism help him deal with them and - do YOU have someone to support you with all these issues? 

[Bluebonnet08]

I'm sorry your son is going through this.  I do think that POTS can have an affect on mood/anger.  However, you could also look into the Florinef.  It is a steroid hormone and I've heard other people say they've had some pretty severe mood swings on it.  It doesn't agree with everyone.  

[Yixing]

Wondering if you know what caused the POTS? POTS is usually caused by chemical insults like antibiotics and other phramaceuticals, hidden infections or trauma. Also it might be a good idea to monitor his heart rate.  I can imagine how difficult it must be for a teenager to deal with POTS.  It can happen that when he starts to become anxious it means his heart is racing and it is time for him to lie down until he feels more comfortable.  Increase water intake, excerise as much as he can lying down and as much as possible very pure diet. With the portable blood pressure cuff it is very easy to monitor his heart rate so he can know when he needs to lie down and prevent a huge stress response.  Maybe you are already doing these things.  Also CBD works wonders for some folks on the spectrum.  It must be organic and grown in the USA.  A meditation like TM would help normalize his autonomic NS. Just a sharing here as I am not an MD, but a POTS surivor on the spectrum and HA HA I am not a teenager; I am 73.  Hope this sharing helps a little.

[brainchild]

I can’t comment on the autism piece, but I’ve had POTS nearly all my life and I get anxiety and panic attacks which I associate with it. Is it possible for him to have something like Xanax to help him get through this?  It’s been a huge help for me.  I second the suggestions to up water and salt intake (of course if his doctor oks this). I found Trioral ORS worked better for me than salting my food and drinking plain water. To add to the complexity, check into mast cell activation syndrome (MCAS). This may be playing a part as well. It is so much more than hives and anaphylaxis. Mast cells are in every tissue and are in communication with nerves - so it can cause pain, GI issues, headaches, all kinds of symptoms. Look up Dr Lawrence Afrin online. 

I find this article helpful in describing the array of symptoms with dysautonomia (it includes mood swings):

https://www.medicalnewstoday.com/articles/76785.php

Hope that you find some help for both your son and your family. 

[Kim Wave]

Just saw a PHD neuropsychologist she gave my 13 year old son the diagnosis of high functioning autism.  I always knew he had it but just got him evaluated Whdb he started exhibiting pots symptoms with definite positive orthostatics.  My older son has pots and my oldest son had ASD.  Anyway, I’ve seen extreme mood Changes also.  I believe the pots is throwing him for a loop. He can’t handle his body not working right. The neuropsych told me Autism spectrum have vagal nerve stimulation and therefore you will see varying cases of vagal nerve syncope or pots or dysautonomia in individuals.  Told me getting control of his anxiety first then pots will help it all.  So plan is start on anxiety meds, then add maybe midodrine and then see how he dies.  Long term plan is neuro feedback through a collegiate center only (highly trained) for brain retraining.  

[Blaze]

Hello

I'm sorry, this must be a confusing time for all of you. 

I have battled with these out bursts for years, despite engaging in so many psychological remedy as I possibly could. 

It turned out after years of struggling I ended up fitting. It was almost like my body was too full of adrenaline. 

I fought to understand and was eventually diagnosed with hyperadrenergic pots. ( your adrenaline levels rise massively on Standing) There may also be an increase in blood pressure during the tilt test. 

This is a comorbid condition with ehlers danlos syndrome. 

Is your son hypermobile? 

Hope this helps in some way. 

 

Dont give up

Michelle 

 

[Michelle777]

Hi. Thankyou for posting this question. It gives me so much relief to find people with similair struggles to my own. I have hyperadrenergic POTS, EDS and eill soon be investigayed for ASD.

I do an insane amount of work to develop strategies to calm what feels like a constant storm, that goes way beyond the parameters of mind or character. 

I often feel trapped in this body, flooded with adrenalin. Hyper alert, managing sensory information, trying. beyond the fog,  to articulate what's happening against the lack of blood being sufficiently circulated back up to the brain. All beacuse I stood or sat up. 

I am an extremely sensitive person and  I dont recognise myself at all in the midst of meltdowns. It feels like my body is in the driving seat, my mind riding along in the back, trying to direct me away from a car crash. 

It helps massively to have people around you who understand that we are starting from an uneven playing field. We are at a major major disadvantage for regulating. That is primarily physiological, not psychological, although adopting breathing techniques and adaptive behaviours ( contracting in a gap when feeling overwhelemed, silence, running outside) all really do help manage things better. 

The best thing you can do for your son, is help him understand what is happening to his body during postural changes. How this creates additional challenges for him and how it is not a psychological weakness. It is a disability that can be managed with better understanding. For himself and his network of support. 

I can imagine it must be extremely difficult to watch as a parent. It can be channelled into something managable, even useful at times, with the right support. 

So much empathy for you and your family. It can be a devastating, isolating condition. 

Please let him know, from me, he is not alone. 

If there is anything at all I can help with

Please let me know

Michelle 

 

[flowntheloop]

On 3/8/2017 at 1:04 PM, elfinko said:

Does anyone have experience with a dual diagnosis of POTS and Autism in a teenager? We have a 16 year old boy on the spectrum. He is verbal and high functioning. He  was diagnosed with POTS in late 2015 and we've seen increased violent meltdowns ever since the diagnosis that have resulted in half a dozen ER visits for psychiatric evaluation. The latest incident was 4 days ago. Early on he was prescribed Florinef and that seemed to help a lot with many of the symptoms (back pains, stomach pains and general exhaustion). He is still taking it, but lately a lot of the fatigue, stomach aches and headaches have begun to return.

I'm becoming increasingly convinced that the POTS symptoms are setting him off and he's just unable to verbalize the anxiety, so he acts out violently. It's like a switch goes off in his brain and he turns into a different person. This can last for 30 minutes. It can last for hours. He is able to speak, but he has a tough time being very specific about the discomfort and the prescribed Adavan doesn't seem to help him, which makes me think it's the POTS, since Adavan isn't going to address any of his POTS symptoms.

I'm not looking for any specific answers. Just trying to gain some insight into this dual diagnosis. Very frustrating to see your child suffer like this and mom is getting afraid to be alone with him lately.

 The POTS hit him like a ton of bricks. I've never seen such a drastic change in personality before. It was like he fell ill overnight. That quick.

@elfinkoFirst of all, I'm so sorry that your son is going through this. I am autistic, am on the hypermobility spectrum (possible hEDS), and I am seeing a cardiologist on Feb 2 to assess POTS symptoms. From what I'm hearing it is very common for autism, hypermobility (hEDS), and POTS to occur together. Is your son hypermobile by any chance?

My tachycardia and low blood pressure episodes definitely DO play a role in autistic meltdowns/shutdowns. As you probably already know, we are very easily overloaded-- so EXTRA sources of sensory discomfort can be disorienting and absolutely exhausting. Ativan is helpful in lowering my health anxieties whilst in the midst of flareups, but of course does not help my underlying symptoms. I wish I could offer the perfect advice, but I'm still trying to find my way through this as well. Here are some tools that help me with my dysautonomia symptoms:

1) Breathing exercises (at least twice daily). I use the Balance app, and the 4-7-8 breath technique works best for me. Helps calm my autonomic nervous system to some extent and can sometimes get my HR back down and quell the other symptoms a bit.
2) Video therapy at least once a week. It isn't a cure for any of my autonomic issues, but it is nice to be able to vent to someone about them.
3) Create a sticky note or note card with a list of things that my husband can do to help me during flareups and meltdowns/shutdowns. I often go nonverbal during these times, so it can help to have one on hand!