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:
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!
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.
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.)
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.
Thank you so much for writing back. The Dr. tried both clenazapam and valium, both with horrible reactions. I don't know if you can answer this question or not, but I'm having a hard time finding an answer. When the mayo did receptor testing, they found antibodies to small cell lung cancer in his serum. They followed up with a spinal tap and found no sign of malignancy in the csf. Does that mean the anitbodies was false positive and there's no reason to worry? I ask because in the past 2 years I've lost my father, mother and aunt all to lung cancer, and now my brother has cancer as well. I confess that I am very worried about paraneoplasti syndrome or pheochromocytoma. Any suggestions would be welcome.
Unfortunately, that question is above my pay grade, so to speak. I would think it's worth seeing a specialist to at least make sure those things are ruled out. My guess is the best specialty for that would be a Hematologist-Oncologist. Do you have a physician who will give you specialist referrals? I agree that you need to rule out paraneoplastic syndrome and pheo for absolute certain. I'm so sorry for you and your son, as I know how stressful "not knowing" can be. I hope you get some answers soon. You may want to look into the doctors that Christydrake mentioned; I've heard very very good things about them.
Oh, out of curiosity, in case it sheds some light on things ... what specifically were the reactions to clonazepam and valium? I just want to make sure I have as much information as possible so as to give you the best advice I can.
Best wishes, H.
First, let me say how grateful I am for your responses. His responses to valium and clonazepam were the same, for a short time they worked well, but within a few days they would trigger mood instability, personality changes and aggression. They also made his sleep issues significantly worse. Just to complicate our lives a bit, the Mayo did find a chromasome duplication; he has 3 Gaba B receptors, something the Mayo has never seen before. While they said they had no idea what that might mean, in reality, since Gaba B blocks reception to Gaba A, I suspect that's why medications are so ineffective.
On a positive note, I had a bit of a meltdown at my son's psychiatrist appointment. They have tried for almost 3 years to treat this solely with psychiatric medication, and have finally exhausted all options. Xanax is the last med in their cupboard. And if this is anything like the others, this one too will eventually fail, and frankly there's nothing else left to try. I blurted out all of my questions regarding the likelihood of low blood volume due to hyper joint mobility, or the possibility of paraneoplastic syndrome or pheochromocytoma and she was just dumbfounded that no one was following up on those questions. The next day she called me with a referral to a neuro endrocrinologist. She had to pull a few strings because apparently he is not accepting new patients, but she got us in the door and my son has an appointment with him in March.
It's amazing how good it feels just to talk to someone about these things who doesn't look at me like I'm speaking Greek. Thank you.
Great news about the neuro-endo!! I'm very hopeful that this will be the breakthrough you need to be able to help your son. I am very impressed by your strong advocacy for him; you're doing all the right things. Hang in there and hopefully answers and better treatment are around the corner.
Thanks again for all of your time and suggestions. I'll touch bases again when we learn more.
I will keep you and my son in my thoughts, for better days ahead. I'll keep an eye out for updates. Hang in there, mama bear, you're doing all the right things!
Feeling a bit down and thought I'd share an unfortunate update. As I suspected, the xanax stopped working. He developed the same side effects, essential psychotic episodes, that he developed when taking valium or kolonipin. So for the past few weeks he's had no medications at all. Yesterday I explained I was going to be out of town for a few days to close out my father's estate. I didn't realize it at the time, but that just freaked him out. He intentionally took an overdose last night and had a very severe seizure, frothing at the mouth, vomiting blood. It was everything we could do to keep him from throwing himself off the bed. So at 4 am, we called for an ambulance to get him to the emergency room.
He's okay and home now. Just feeling rung out.
The up side is he sees the neuro-endocrinologist on Monday. Guess I'm feeling like i'm holding on by the skin of my teeth. They say hope springs eternal, I just seem to be stuck in the forever winter.
I am so terribly sorry to hear that. How scary! Have you and his doctors considered having him admitted to a neuropsychiatric inpatient ward where they might be able to more rapidly pin down an effective treatment regimen for him? In the meantime, did the emergency room help you formulate a "no suicide contract" with your son? Here's some information on doing that, if you haven't already:
I know there's nothing I can say right now that's going to make you feel better, but I hope the appointment with the neuro-endo on Monday yields some useful advice. Please know that I am here whenever you need to vent, whether on the community page, or via PM (hover over my username and select "send message" in the popup menu). I will keep you and your son in my thoughts.
With empathy, H.
Well, we saw the endocrinologist on Monday. He's taking a closer look at my son's glucose levels, they're all over the map. He installed a 5 day glucose monitor. Other than that, he couldn't answer any of our questions regarding blood volume, gaba b receptor antibodies (sclc) in relationship to his genetic anomaly. However, he did refer us to a cardiologist that treats pots patients. That appointment isn't until the end of April.
I was surprised when I called the cardiologist office. When I mentioned Pots, I was immediately connected with the Dr.'s nurse. They actually knew what I was talking about. Here's to hoping this Dr. knows at least as much about POTS as his nurse does.
Still thinking about changing my tag to forever winter, but at least I know I haven't exhausted every option yet.
It sounds like you're finally connecting with more knowledgable doctors. I know it's an uphill battle (and can sometimes feel like a Sisyphean task), but you are facing the right direction and *I* can see the progress you're making even if you can't yet. Hang in there. I wish I could press fast forward and get you through to the other side of this!
I will keep you and your son in my thoughts, with hopes that the doc you see in April is a rockstar. In the meantime, I hope the glucose stuff leads somewhere productive. I myself have weird glucose issues. It's perfectly normal 99% of the time, but whenever I'm up to my ears in a medical crisis, it goes haywire and shoots up and down at random. I've had to get both insulin and glucose within the same inpatient hospitalization because it's so erratic and random ... but every time we've checked my A1C to see if I was developing diabetes ... it was perfectly fine.
Keep me updated. April will be here before long.
Hi, I am a guy with hyper pots and sometimes meds will work for a while. This is really hard to deal with. Has your son tried tizanidine yet? Seems to help like clonidine to stop the norepinephrine flow. That is the hard part when meds stop working.
There are a couple of places that may be able to help address the psychological issues, while also directing him to local POTS specialists. Try the Retreat @ Sheppard Pratt and McClean @ Harvard. They're expensive, but if you can afford them they're the best.
Also, you may want to check out this resource for various POTS treatments, as it lists a ton of medications that have been proven effective in medical journals: http://myheart.net/pots-syndrome/treatments/
Here are the links:
Wow, thank you for your thoughts. It is really hard to find men with Pots and I always wonder if it effects them differently. We keep learning more as time goes on, but it is a frustrating process.
As for meds that suddenly stop working, that has been the rule not the exception. I've wondered if it was because of his genetic anomaly (3rd Gaba B receptor) or the pots. After 2 years we figured out that any attempt to treat the anxiety with anxiety medications will result in psychotic episodes within 7 to 10 days. It's never a maybe, only a when. This includes benzodiazapines or even more benign meds such as seroquel, zoloft or cymbalta.
Recently I read a post for a parent that found that salt tablets helped. Since my son's on no meds at this point, I ordered some online. They helped more than I thought possible. We started with 2 tabs a day and now he's taking 4 to 6 grams a day. When the anxiety gets really bad, salt and water help. (at least it does this week, we'll see what next week brings).
I'm also a man with dysautonomia. I don't have POTS, though standing makes my syncope more likely. My family was mentally ill and I've had 25 years treatment for depression. More recently I got diagnosed PTSD. Though I did not have the extreme symptoms of your son I recall my teen years were most difficult due to even milder ones. I am 65 now and have been on fluoxetine for years, and more recently medical marijuana. My mental and emotional issues are largely resolved through a combination of cognitive-behavioral therapy, medication, and lifestyle change. I've just started learning to manage my physical symptoms and understand how they probably caused my psychiatric symptoms. The worst thing is going through life feeling insane or fearing mental illness. I wish I could give your son a hug and let him know that his fate is not hopeless.
Thank you so much for sharing. I'm sorry I didn't catch your post sooner, but things have been a bit crazy. These days my son is on no medications. He's trying to go back to work but it has made his insomnia much worse. It's almost as though the longer he is upright, the more adrenaline hits his system and that makes it impossible for him to stop. He is driven to keep moving no matter how tired he gets.
If you don't mind my asking, what form of autonomic dysfunction are you dealing with? My son does not get the physical weakness or pain that so many have, but he constantly struggles with racing thoughts, memory loss, brain fog, visual disturbances and insomnia.
The racing thoughts and memory loss make it almost impossible to keep him on a steady salt and water regimen but without it all of his symptoms get worse. Do you experience similar symptoms?
I saw your note. How can I help you?
I came across this post that explains the mental issues that are going on due to pots. Now if I can find a doctor to help guide me through figuring out diet and supplements to get everything balanced. There is so much to the GABA being out of wack that I can see the effects of it on my whole family, besides the 2 of us with pots/dysatonomia.