Dysautonomia (Autonomic Dysfunction) Community
Pots and mental instability
About This Community:

This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Pots and mental instability

Please help, has anyone seen severe mood swings in pots?  My son is now 18 years old and was diagnosed 9 months ago with Hyperadrenergic Pots at the Mayo in Rochester.  Pots is pretty rare in males and I'm wondering if it presents differently for them.  His Pots appears to be caused by food sensitivities including corn, sugar, gluten, grains in general, meat protien, you name it.  While he does not suffer with the pain and weakness that so many deal with, he goes through frightening mood swings.  One minute he's kindly Dr. Jekyl, then suddenly he's Mr. Hyde.  He becomes physically aggressive and threatening with very scary thoughts and images in his head.  He has been to 4 different psychiatrists, tried every med on the market and nothing helped.  He is now having some degree of luck with xanax, (it blocks the constant adrenaline surges) but he has to take 8 mg a day.  There are no side effects from this med, no high, no drowsiness, it doesn't even phase him.  Has anyone ever seen anything like this? Symptoms are much improved if he stays in bed with his feet elevated above his heart, but no one can live that way forever.  Any thoughts or suggestions would be greatly appreciated.
4 Comments Post a Comment
Blank
612876_tn?1355518095
I have a few thoughts. Ultimately, my suggestion will be to discuss the behavioral changes with his doctors. But, more specifically, I would want to have his testosterone and other sex hormone levels checked to make sure that's not contributing to his behavioral change. I would also want to rule out pheochromocytoma if that hasn't been checked yet. Here's a link to a previous discussion on medhelp about pheo that might be informative if you're not sure what that means:  

http://www.medhelp.org/posts/Adrenal-Insufficiency/pheochromocytoma/show/1014029

I would think a neuro-endocrinologist would be the best referral at this point, as it's likely whatever is causing the behavior change is neurological, endocrine, or both.

I'm sorry your son is struggling with illness, and I hope he outgrows the POTS within the next few years!
Best, H.

Blank
Avatar_n_tn
Thank you for your response.  I did take him back down to the Mayo to check his metanephrine levels, which were normal.  That should rule out any  pheonochromocytoma, I believe.  It's so strange, I can stop all of the mood swings and anxiety if he just stays in bed with his feet elevated above his heart.  He is currently taking 2 mg xanax 4 times daily.  That barely keeps things in check, he is still having breakthroughs between doses. That dosage should be high enough to drop a horse, but it doesn't even phase him; no high, no drowsiness, all it does is block adrenaline and the dosage is still inadequate. We're having a very difficult time finding a doctor to oversee his pots.  None of the recommended follow up testing has been done since his diagnosis.  Not sure where to turn anymore.
Blank
612876_tn?1355518095
Thanks for the additional information. I have a couple of thoughts. First: Cleveland Clinic. If you can get him there, I highly recommend it. Although Mayo and Cleve both get good reviews from Dysautonomia patients, I hear the best from Cleveland. If Mayo left you hanging, I'd turn there. Be prepared, though, that like Mayo they sort of operate as consultants on your case and will want your local doc to follow through. If you don't have a local doc that can at least follow orders (and be humble enough to do so without ego issues), you likely need to get that sorted out before going to another big dysautonomia center.

Second, I think a benzodiazepine is a really good adjunct to POTS treatment, especially in the hyper POTS patients. It can help modulate and tame the overactive sympathetic nervous system. However, Xanax is not often chosen as the benzo to treat POTS. Most frequently, I hear Clonazepam. Occasionally Lorazepam (brandnames Klonopin and Ativan, respectively). Clonazepam is a preferred option because it's longer-acting than Xanax or Ativan, and thus you can easily maintain more consistent levels of the drug in your system, don't have that "drop off the end of a cliff" feeling when you're due for another dose, and is less likely to be tolerance-forming, which means you're not regularly getting habituated to your dose and needing more and more just to get the same effectiveness. Has he tried clonazepam at all? I've been on both lorazepam and clonazepam long-term, and had good results with both, but I have a different form of dysautonomia, so definitely discuss the pros and cons with your sons doctors.
My final thought is therapy. Cognitive behavioral therapy can be an important adjunct to POTS/dysautonomia treatment. It's depressing having a chronic illness, and it can cause a lot of anxiety, not to mention the somatic push for higher anxiety levels from the out-of-whack hormone and neurotransmitter levels in POTS. If you can find a therapist who has special skills in both chronic illness and CBT, all the better. I've been in therapy on-and-off throughout the course of my illness, and when you have a good fit with a clinician, it is really helpful to your overall health and well-being. Tell your son not to be afraid to speak up if he doesn't feel like he "clicks" with a certain therapist. Therapists are trained to understand that this can happen, and will be happy to refer you to someone else more to your liking. (That's a good policy for medical doctors as well, but I find in practicality that their egos can really get in the way sometimes, unfortunately.)
Blank
Avatar_f_tn
Sorry your son is going through this.  My son was diagnosed at 14 and will be 20 next month.  He doesn't have the mood swings at all, very,very mellow.  He does take Clonazepam, along with a couple of other medications.  

Another good doctor for POTS is Dr Thomas Chelimsky.  He is in Milwaukee, WI at Medical College of Wisconsin.  He diagnosed my son and treated him when he was located in Cleveland.  His wife is a pediatric gastroenterologist also specializing in dysautonomia.  Both of them treated my son, most of his symptoms were GI related.

Hope you find help soon,  I know exactly what you are going through.  Our local doctors weren't very helpful.  
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Dysautonomia (Autonomic Dysfunction) Community Resources
RSS Expert Activity
748543_tn?1371753642
Blank
TMJ/TMJ The Connection Between Teet...
5 hrs ago by Hamidreza Nassery , DMD, FICOI, FAGDBlank
469720_tn?1388149949
Blank
Abdominal Aortic Aneurysm-treatable... Blank
Oct 04 by Lee Kirksey, MDBlank
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
Top Arrhythmias Answerers
612876_tn?1355518095
Blank
Heiferly
Columbus, OH