Severe Aggression and POTS

[Miraclemaker11]

Hello Friends.  I’m here writing on behalf of my 22-year-old autistic son who was recently diagnosed with POTS back in August.  We are thankful to have a diagnosis, although it took over two years to figure out.  I suppose we’re lucky because I’ve read that it takes folks many years and many misdiagnoses to get it right.  We also have had our share of specialists who either lacked compassion, knowledge, or both.  We have three main concerns for our son at this moment - chronic fatigue, insomnia, and severe aggressive episodes.  He takes Midodrine, Mestinon, lots of salt and water, Clonazepam, and other supplements to help with relaxation and sleep.  What’s most interesting is that, as we have increased his Midodrine his blood pressure rises and, when that happens, he seems like his old jovial self.  The problem there is dosing because too much gives him headaches.  Right now he takes Midodrine 7.5mg in the morning and at midday and 5mg in the mid afternoon and early evening.  That’s 25mg of Midodrine total per day.  His rage episodes are the worst I’ve ever seen in anyone - so scary for him and us as his parents.  We take his BP several times a day and he never appears to have high BP.  As we’ve increased the Midodrine, his blood pressures and mood sometimes approach normal.  This doesn’t not look like Hyper POTS to us.  It looks more like regular POTS combined with chronic fatigue.  My take is that the chronic fatigue and persisting low BP leave his body in a position where it tries to counter that by over producing norepinephrine which, in turn, contributes to his rages.  As his dad, this is heartbreaking because I feel like I’ve lost my sweet son who was never ever like this up until 3 years ago.  We even took him to one of the top Autonomic Medicine specialists in the country (nearby and after a long weight) but, because my son had a rage episode while there (brought upon by fear) this physician refused to treat my son or see us again.  While I somewhat understand this physician’s perspective, it was disappointing that he did not offer to follow up with us by phone or suggest a separate consult/meeting with us as his parents.  In my own work as a psychologist I would never turn my back on a family in need.  Thank you for any ideas and suggestions and also for your compassion and patience listening to what I have to say.  

[Random-Symptom Man]

@Miraclemaker11 - welcome, and I’m sorry your family is struggling with this.

I don’t have experience with those medications or autism, so I can’t comment on those. Sorry.

I can say I’ve had a harder time handling anger since my body started to revolt. For me, it often feels like I’m trapped in an Iron Maiden. I can’t do anything. If I feel well enough to try, my illness either causes a weird symptom, knocks me out, or just plain hurts. The most frustrating part is when my brain and body revolt at the same time. I’ve wanted to smash a doctor’s office recently. Fortunately, I refrained. 

Sometimes my crappy autonomic nervous system crossed signals and wants to jump towards fight. When this happens, it takes a lot of will to let even little things go. I can imagine that autism would make controlling this impulse much harder. I’ve assumed it was an adrenaline surge, but I really don’t know.

I get either shaky/jittery or I “crash” after I get one of these impulses. Does this happen to your sun? It feels a lot like narrowly avoiding an accident. That’s why I assumed it was adrenaline.

[Overpots]

This is my first time answering a post, but your message really struck me.  Asking for help takes courage! Especially when living with a chronic illness-or caring for someone with one. It sounds as if your son is experiencing one of the worst side effects that POTS has to offer, especially for young men with autism.  There is a hard reality that doesn't make sense, but it seems, many autistic young adult men develop a type of mental illness that presents in a similar way to a bipolar rage.  Through many adrenergic rage episodes, their brain becomes wired to the point that it takes very little to "trick" them into their next swing.  As a psychologist, you have likely encountered patients that have bipolar of a more "traditional" sort.  Bipolar and POTS in addition to having autism is not the same as a standard POTS presents, IMO.  This POTS/ autism plus bipolar is much darker and more severe, IMO.  

I am sorry to hear that the specialist refused to treat your son.  That so discouraging!  If your son's aggression is as bad as I have seen, I do unfortunately understand.  Knowing the right way to communicate with patients that are hurting and in need of a compassionate caregiver is critical.  Did the specialist at least recommend any type of treatment?  Were you referred to a psychiatrist that is more experienced in handling aggression and violence? The primary goal is generally to treat adrenergic rage reactions from becoming "psychotic"  by blocking the beta-1 type receptor in the heart and brain.  This helps to prevent excessive adrenaline production, which could then help with your son's chronic fatigue as well.

Unfortunately, adrenergically-driven rage reactivity is difficult to control.  You are doing your best as his dad and likely this extra responsibility is overwhelming for you. I do wish the very best for your son and would recommend your reaching out to a neurologist or psychiatrist for further treatment.  Healing is a journey and we can't do it alone.  We need support no matter who we are and what the situation may be.  

 

[Miraclemaker11]

Thank you Random-Symptom Man and Overpots for your insightful and compassionate replies.  Random-Symptom Man - it is much like you described ... being trapped in an Iron Maiden and then the adrenaline surge appears to help get you out.  I admire your awareness and restraint which seemingly must require super-human will power to execute.  The best book I’ve read on this subject is “How to Help the Violently Aggressive Child” by Dr. Ralph Ankenman.  These adrenal symptoms are so common in POTS/Dysautonomias, but you have to know whether your surges are of the Alpha, Beta, or Bipolar Type to then know the best and right treatments to pursue.  Right after these surges my son is indeed shaky and jittery and suddenly gets very sleepy.  

Overpots - I also appreciate your kindness and observations.  The provider who refused to treat my son did mention psychiatry and also wrote a script for Propranolol, but there were/are other ways to approach this.  I’ve been in many of these situations as a psychologist and always offer to set up separate meetings (later) with the family members to discuss what’s happening rather than leaving them stranded.  Unfortunately, the psychiatrists that I know really lack knowledge overall and, in many cases, make people worse because they leave it up to guesswork.  The same has been true with the neurologists.  That being said we’ve had the best experiences with the family physicians, nurse practitioners, and cardiologists.  You’re right about a Beta-1 blocker possibly being part of the answer but they also lower blood pressure and low blood pressure is one of my son’s most prominent and persisting symptoms.  I’ve read that if you add an Alpha-1 blocker then that can help with the rages.  You’ve got this cycle of Alpha Adrenergic Fatigue with persisting elevated norepinephrine levels leading to constriction of the blood vessels, low blood fluid volume, low blood pressure, cold extremities, dizziness upon standing, tachycardia, and exhaustion from being “wired and tired.”  Here’s what’s tricky and confusing.  The Midodrine helps tremendously (and this seems to be true for many people with POTS) and is an Alpha Adrenergic AGONIST.  During the 2 to 3 hours this medication works my son has never had a rage or even a weird or strange mood.  He’s close to “normal.”  So, it’s confusing that a medication that stimulates this alpha adrenergic response can help but these other alpha or beta blockers are supposed to help by lowering adrenaline.  Maybe the answer is that people end up having to take both of these kinds of medications simultaneously.  We did try Propranolol for 4 days and my son had horrible insomnia and nightmares and actually ended up worse.  That’s made us gun shy about starting any of the other adrenergic-blocking medications.  I have already spoken with neurologists, psychiatrists, and even some autonomic specialists about this and they seem to have the “deer in highlights” look and cannot follow the line of reasoning.  Plus, many of them have also never heard of POTS or Dysautonomias.  And, it’s not like I’m in a rural town with less access to healthcare.  My metropolitan area is just shy of 2 million people.  The main takeaway from you and Random-Symptom Man is your kindness and genuine deep effort to understand and heal.  I am very moved by both of your messages and shared them with my wife.  She is also extremely thankful.  You are right in that we cannot do this alone.  As an aside, the first people to get the correct diagnosis for my son is a website called CrowdMed.  What a tremendous resource.  

Thank you both for caring and sharing.  I wish for your own healing.  Let me know if I can help in any way.  

[Pistol]

@Overpots -  As far as I know POTS does not cause bipolar disease - so do you mean POTS CONTRIBUTES to developing Bipolar?

On ‎11‎/‎9‎/‎2019 at 9:35 PM, Miraclemaker11 said:

 You’ve got this cycle of Alpha Adrenergic Fatigue with persisting elevated norepinephrine levels leading to constriction of the blood vessels, low blood fluid volume, low blood pressure, cold extremities, dizziness upon standing, tachycardia, and exhaustion from being “wired and tired.”  Here’s what’s tricky and confusing.

@Miraclemaker11 I have hyperadrenergic POTS with both high AND low BP. I also get frequent adrenergic storms as you describe. I faint when my BP drops from vasodilation and take seizures when it rises from vasoconstriction. This is extremely difficult to treat. In my case it is a result of sympathetic withdrawal resulting in sympathetic overcompensation AND VICE VERSA. I have tried almost every med used in dysautonomia over the years, including several beta blockers. The beta blocker most able to stabilize these swings was Carvelidol, which is both beta and alpha - active. In addition to this I take Diltiazem, a calcium channel blocker which has helped prevent the extreme vasoconstriction and has also helped with the adrenergic surges. I have found that the symptoms your son experiences ( that you mention above ) happen to me when I have sympathetic overcompensation and in my case if I become so unstable that the meds are no longer help I need IV fluids to stop the constriction which then stops the adrenaline dump. This ALWAYS has stopped the surges for me. I have a port and use IV fluids at home as needed. Of course I am not implying your son should get IV fluids when he is in a rage ( this would be almost impossible I imagine ) but rather I am trying to explain the mechanism by which these symptoms happen for me. 

I am very sorry for your son for I completely know what it is like and also how scary it is to be in a surge. It makes me very anxious ( a result of the Fight-and-Flight ) every time and I am very vulnerable during these attacks. Not to have an understanding of these feelings or a way to calm down - I think this could easily cause rage in an autistic individual. 

On ‎11‎/‎9‎/‎2019 at 9:35 PM, Miraclemaker11 said:

So, it’s confusing that a medication that stimulates this alpha adrenergic response can help but these other alpha or beta blockers are supposed to help by lowering adrenaline.

I have also tried midodrine and it was not effective for me but I wonder: considering the above mechanism that happens in me if it could be that the midodrine simply prevents the adrenaline dump that without it would be triggered? 

I can imagine just how frustrating it is to see your son suffer like that yet getting the door slammed in your face by the specialist who is supposed to be able to help. There are autonomic specialists listed on our physician site, maybe there is another physician who you could try to see???? Best of Luck to you - please keep us posted!!!!

[Overpots]

@Miraclemaker11, It sounds like you have assembled quite a team of doctors to treat your son.  Is there one who has taken the lead to coordinate care?  You mentioned fatigue and low blood pressure being among the most significant factors.  With autonomic dysfunction,  sleep can be a big problem.  I have found that working to improve sleep often helps daytime symptoms.  What have the doctors suggested to treat his underlying fatigue?  Excessive norepinephrine activity can cause physical fatigue which in turn can trigger alpha-adrenergic rage.  The problem seems to come from a failure in the rhythm of the norepinephrine cycle.  When norepinephrine levels fail to drop during the night, the brain can't properly rest.  This not only disrupts sleep but can cause the blood vessels to remain constricted.   Then you have a cycle of low blood volume which then contributes to poor circulation, cold extremities, dizziness upon standing, tachycardia, and exhaustion.  Perhaps you could ask about clonidine?  When given at night, clonidine may provide a break from the norepinephrine release plus it has the added benefit of dilating blood vessels which may improve blood volume- and promote sleep.

You are correct that the autonomic system is less than completely understood by many doctors.  Because it has such a significant presence, and affects a variety of organs, this complexity requires specialized knowledge.  I have found that after a bit of education about what's going on, primary care physicians as well as other specialists can become great partners in helping you on your way to healing.

 

 

 

[Miraclemaker11]

Pistol - thank you for your thoughtful response.  My heart is with you envisioning how you even try to make it through your days.  It seems like what is most tricky for you is that you are getting alternating over and under activity of the autonomic nervous system.  That throws you into the Hyper POTS and high variability in blood pressure.  It would seem that, if your blood pressure could remain stable and close to normal then you wouldn’t end up with adrenal surges or surges.  Has that been true for you?  It does seem that Carvedilol and Diltiazem help along with the port and IV fluids.  I’m sorry that the Midodrine didn’t work for you.  Did you actually get the supine hypertension from it or did it simply not work.  I’ve actually read in a couple of places where people have done well on a low dosage (2.5 mg) of Midodrine taken every 1 to 2 hours.  The low dosage apparently prevents extra high blood pressure and helps avoid the #1 side effect of headaches.  It does look like (even in Hyper POTS) that the adrenal surges are counter regulatory to offset the low BP and drops in BP, so if you can actually boost the BP and keep it stable then you prevent the maddening see-saw of symptoms.  As for my son, I just now gave him his Midodrine about an hour ago and he is COMPLETELY normal - just like his old self.  He’s having no fatigue, no mood symptoms, is upbeat, mentally clear, etc.  This is definitely not Bipolar - not even close.  He has no mood (other than happy and pleasant) or psychological symptoms when his BP is normal.  We are fortunate to have specialists working with my son in Northern Virginia, but that is 5 hours from us.  We are trying to arrange a way for our follow ups to be by phone but it seems they are resistant to doing that.  Having said that, the treatment team and two doctors up there have been excellent.  

Overpots - thank you again and again.  Just by caring and thinking it through you’ve already helped my family.  I too think that that Clonidine makes the most sense, and at some point we should try that.  Without a doubt , if my son is experiencing constant norepinephrine overload then his sleep will be impaired (true), he’ll be even more chronically exhausted (true), and more prone to these rages (true).  My hope that is that the Clonidine would do exactly as you described.  If the blood vessels dilate more the blood volume would increase and you would think that the blood pressure (because the vessels are more dilated) might rise.  But, it seems that the actual biggest downside of Clonidine is that it lower blood pressure.  My son runs low blood pressure for a greater portion of the day with the sole exception being for about a 2 hour period starting an hour after he takes each Midodrine dosage.  He’s never had any high blood pressure (only normal) over the past 8 months we’ve been measuring it.  We are fortunate to have a very caring family physician that helps our son.  He is willing to try any treatment and quite kind.  But, he’s not a dysautonomia/POTS specialist.  We are very lucky to have him because at least there is the will and demeanor to assist.  He is one example of the type of physician you mentioned that is open to learning more about dysautonomias in general and that’s a great start.  

[Pistol]

41 minutes ago, Miraclemaker11 said:

It would seem that, if your blood pressure could remain stable and close to normal then you wouldn’t end up with adrenal surges or surges.  Has that been true for you?

Yes - and that is exactly why IV fluids help to stop the ANS to vasoconstrict. 

 

43 minutes ago, Miraclemaker11 said:

Did you actually get the supine hypertension from it or did it simply not work.  I’ve actually read in a couple of places where people have done well on a low dosage (2.5 mg) of Midodrine taken every 1 to 2 hours.  The low dosage apparently prevents extra high blood pressure and helps avoid the #1 side effect of headaches.

In my case it just did not work, I had no bed effects - simply no benefit. IMO trying the low dosage more frequently sounds like a good idea for your son. Midodrine is very short-acting and I heard from other members on this forum that they had success with this regimen. 

 

46 minutes ago, Miraclemaker11 said:

.  We are fortunate to have a very caring family physician that helps our son.  He is willing to try any treatment and quite kind.  But, he’s not a dysautonomia/POTS specialist.  We are very lucky to have him because at least there is the will and demeanor to assist.  He is one example of the type of physician you mentioned that is open to learning more about dysautonomias in general and that’s a great start.  

I too am blessed to have a PCP like that. He has been my Rock since the start of my illness 10 years ago and has been there for me despite numerous bad specialists that were very ignorant, yet he never even heard of POTS before me. I guess that is the difference between a medical doctor and a true physician - HEARING and SEeING the patient, not just the symptoms. 

[JaneEyre9]

17 hours ago, Miraclemaker11 said:

The Midodrine helps tremendously (and this seems to be true for many people with POTS) and is an Alpha Adrenergic AGONIST.  

Hi Miraclemaker- My heart goes out to you and your family as you try to cope with these difficult symptoms and manage your son's care. I can't imagine how much harder it must be when a doctor doesn't help because of your son's symptom of anger expressing in the office. It should be the opposite - that you get more immediate followup and care.

 I noticed that you said an alpha agonist helps your son the most and it reminded me of a research paper that came out recently about POTS patients expressing auto-antibodies to alpha receptors. This auto-immune angle is something that may help in figuring out the underlying cause of your son's symptoms. If he could be tested for antibodies to different receptors, it might guide medication choices. Additionally, there are both drug and lifestyle treatments for autoimmune diesease that might be effective for him.

I personally had a much more difficult time with anger and anxiety back when I was disabled with POTS and had chronic fatigue and very low BP as well. After years of this, I went to the integrative medicine department at the Cleveland Clinic and found ways to reduce my body's inflammatory response, which in turn improved BP, energy, and mood.

I wish you and your wife and son all the best. POTS is a terribly difficult and isolating journey, and I admire you for reaching out and looking for answers to help your family.

 

https://neurosciencenews.com/pots-fainting-biomarker-14888/?fbclid=IwAR1yzka5ogO-f1H9IB3hpjSEz5B345ab2IdGNO1asI8JLsewzqxxj1gJZJ8

[Miraclemaker11]

Hello JaneEyre9!

Thank you for reading and listening intently and revealing the depth of your empathy.  I’m so thankful to hear that your integrative and diligent whole health treatment helped you get your life back.  My son (as well as myself) also takes many of the supplements that you are on, and we are gluten-free, dairy-free, and vegetarian.  Thank goodness the dimmer switch on your inflammatory response is controlled and dialed down so you can life a better life.  I am so happy to know this

I also came across some information about this study on revealing the presence of autoimmune antibodies to both alpha and muscarinic receptors (present in 90% of those with POTS in the study) and can see how this might apply to my son.  Do you happen to know where we can get this specific testing completed?  The article mentions as ELISA test but doesn’t say what lab they used.  

Also, I don’t think it’s a coincidence that I was previously diagnosed with Autoimmune Hypopituitarism with Secondary Adrenal Insufficiency, am now having a recurrence of those symptoms, and previously improved on Prednisone.  It might explain why my son seems to be having the best response overall to Midodrine.  While it’s mostly used to treat POTS, it is also a medication that is prescribed for Adrenal Fatigue.  

Thank you from all parts of my heart.  

[JaneEyre9]

Hi Miraclemaker - it sounds like there is autoimmune disease in your family like there is in mine. It is hard work to maintain a strict diet and take the right supplements. You are clearly very dedicated to your son's well being. 

Here is a link to the full research study:

https://www.ahajournals.org/doi/10.1161/JAHA.119.013602

And this is the German lab they listed in the methods section:  

"ELISA kits were purchased from CellTrend GmbH (Luckenwalde, Germany)"

In the references, it also mentions a study where these antibodies were detected in chronic fatigue syndrome patients, which is interesting. 

It's possible that your primary care doctor could request this testing from CellTrend. Alternatively, a friend of mine said she was tested many years ago through Johns Hopkins. Another option would be to contact Dr. Grubb (in Toledo, Ohio) who was involved in this research paper.

Do you find adaptogens like Holy Basil/Tulsi or Ashwagandha help your health (or your son's health)? Drinking Tulsi as a tea has been very helpful for me with sleep and to cope with stress.

 

[Miraclemaker11]

Hi again JaneEyre9.  I see that you’ve really done your research and put in the full effort toward your flight back to health.  I’m familiar with some of these adaptogens but have never heard of or tried Holy Basil/Tulsi.  I’ll buy the tea and give it a try and hopefully it can also help my son.  Here’s an interesting development in the past 4 days.  We’ve increased his Midodrine dosage to 7.5mg three times a day and 5 mg in the early evening, and he is considerably better - much more like his old self more often.  AND, he sleep has markedly improved these past 4 nights.  So, it’s interesting that a stimulant (midodrine stimulating the alpha receptors) results in him being more relaxed and getting better sleep.

Thank you for the link to the more detailed study and that lab in Germany.  I had tracked them down before but was not exactly sure how to order the kits.  I’m hoping that maybe Dr. Grubb actually has some of these kits and we can get them through him.  I’m also going to take the test given that there is a lot of overlap between my son’s symptoms and my own.  

I do wonder how much of these dysautonomias are actually autoimmune in nature, particularly given that you’ve seen that in your own family?  

Thank you again for your kindness and knowledge.  Every little bit helps.  And, I will make sure to share what I am learning with others.  

[JaneEyre9]

Hi Miraclemaker - I'm very happy to hear that the increased midodrine is helping your son feel better and sleep better! I hope you're able to get the testing done. Please do keep me posted on how things go!

[Miraclemaker11]

Thank you again JaneEyre9.  We are encouraged by this recent relative good news for our son.  And, hopefully, we’ll have luck being able to get that testing done.  I’m wishing the very best for you.  Everything counts in small amounts