I would recommend another opinion. I'm on my 4th cardiologist. The first one sounds just like the one you are dealing with and the next two I felt dismissed my concerns too easily and talked down to me. We just saw number 4 today and she is fantastic and I felt answered my questions and listened to what I had to say (we had to drive to another state but well worth it).
Was he evaluated for Long QT? That jumped out at me right away as that is very dangerous. My daughter was first suspected of having long qt and that's why we ended up at a cardiologist initially.
I really have no other advice than get a second opinion. If I hadn't with my daughter, she would be an epileptic and on anti epileptic drugs. Hope you get some answers soon!
Thanks for the reply - input like yours really helps and keeps me sane! This is actually the 2nd cardio. The first was very dismissive -spent about 5 mins with my son- told us he was dehydrated (he was not) and cleared him for all activities - sports, driving, etc. So he went back to working out and then keeled over after 2 hours of lightheadedness at basketball tryouts. So we went to the er and that is when they ordered tests. They stress test was so bad at the end - they could not get a bp reading for almost 5 mins and then when they finally did it was 220/60. Doc said that was normal and to go away. So then we went to a neuro specialist and she said go back to cardio, so we went to a new one - but she is in the same practice. She is the one who said vasovagal. Two interesting things have come about lately. (1) I saw the tech from the stress test and she said that test is not normal and to find another dr. (2) We asked to get referred to boston childrens and our current card told them there was no urgency so the appt is not for 2 more months. I called them to see if we could move it up and described what is going on - they went to look at the records and the EKG strips from the stress test - the ones that say ABNORMAL EKG and long qt interval - QTc=461 were missing!!! They are going to get with the current dr and get the originals. This new office seems to listen - the nurse spent a half hour on the phone with me yesterday and then called me back about the files. I asked them to look into acquired LQTS due to the triptans and now the prozac and benadryl. The current doc dismissed this without explaining to me her reasoning. I keep thinking the original dr missed it, this one just rubber stamped his findings, and the ped just trusts the two of them. I feel like screaming!
So thanks for the encouragement - I will keep going for my son. He is my hero.
Was your daughter diagnoses with LQTS or something else? Did she have seizures? My son had what they thought were seizures twice - kind of a floating away feeling and then "waking up". Did an EEG said it was normal. He does have cognitive deficits now from all of this - lots of memory issues and reading issues, too.
CHB is THE best place to be imo. My daughter starting having seizures at age 5. During one ER visit it was noticed that she had a borderline long qt which sent us running to the cardiologist. The doctor ruled it out and her latest ekg showed a normal qt. I had the exact same experience as you. The cardiologist kept insisting nothing was wrong with my daughter and we needed to go back to the neuro who couldn't find anything wrong with her. In the end, he diagnosed her with epilepsy and wanted to start her on drugs. That is what sent me to CHB for a 2nd opinion. We were admitted to the epilepsy center for long term monitoring where she had two episodes. They then called in cardiology to consult and she was officially diagnosed that evening with sever NCS (they even completely ruled out epilepsy). I exhausted all the cardiologists in my area (no way I was going back to the original practice) so now we are seeing one in another state. Not convenient but well worth the trip!
Call your insurance company and find out who they will cover. I was surprised to find out I could go anywhere in the country as long as they were part of the plan. Also, I wouldn't let your son execise or exert himself. Long QT is not something to play around with. Good luck and remember, don't let them bully you. If you are not happy let them now it!
Thanks so much for the positive words and advice. I found out today that the ped cardiologist who referred us to CHB refused to send the missing records to CHB! I am starting to get paranoid about this. Do these records still exist, if not where did they go, what did they show. Our ped has not returned my call from last week about his sleep issues and the effects that the recommended benadryl had on him. I called my patient advocate and her office was closed. My son went to PT today because they were supposed to monitor his bp and hr - they did not and he got very lightheaded several times. We stopped at a pharmacy and checked it on a machine - I know they can be way off, but it was 150/60, thirty mins after pt ended. I feel like screaming! No more exercise, even with the PT! Phone calls to be made again tomorrow, I need to up my plan to unlimited minutes! I am not happy and being nice has not gotten us anywhere - I have been diplomatic and polite and we get ignored or yelled at! So, the gloves are indeed off.
How are they treating the severe NCS? How did they tell it was that? My insurance will cover Dartmouth as within out network - we live in Vermont. They will cover one consult at CHB - and then we can talk and apply for additional coverage depending on what the dr there says. This is our second consult at CHS - we saw a migraine specialist in December who sent us back to cardio. We have an ANS specialist here, but he is booked until the end of June - and his specialty is really headaches, with an interest in ANS.
The class of drugs that benadryl is in (1st generation, or "classic," H1 antihistamines) is contraindicated in dysautonomia. This does not mean that ALL dysautonomia patients cannot safely take benadryl (or other drugs in this class such as phenergan/promethazine), but that there is a high rate of adverse and in rare cases even dangerous interactions between drugs in this class and the abnormalities of autonomic dysfunction. Whether or not it will affect a particular person is sort of a craps shoot. Some dysautonomia specialists (many of the docs at Mayo and Cleveland Clinic, from the ancedotal evidence we've heard here) keep their patients off these drugs as a rule. Others decide on a case-by-case basis (mainly if the patient has been able to tolerate the drugs previously without event since the onset of the autonomic dysfunction).
The problem with drugs in this class is their lack of "selectivity." That is to say, the 1st generation H1 antihistamines have a great deal of central nervous system activity ... which is actually why they're so good at that side effect of *drowsiness* that you're trying to exploit right now, vs. their 2nd generation counterparts such as Zyrtec and Claritin which are more "selective" toward the peripheral nervous system. For antihistamine (anti-allergy) purposes, a 2nd gen. antihistamine would be preferable because it wouldn't mess with the central nervous system. In this case however, to promote drowsiness, if you're concerned about possible adverse interaction between dysautonomia and 1st generation H1 antihistamines, you'd just have to find an entirely different type of drug to promote drowsiness as the other antihistamines that don't have this level of central nervous system activity are for that very reason not known to cause drowsiness.
I hope that makes sense. You may want to discuss this with your son's physician.
Feel free to fire away with more questions and welcome to our community,
(Sorry I'm in a hurry ... off to a doc appt myself at the moment),
Thanks so much for the input. Benadryl certainly did have a very negative reaction in my son. I tired to talk to his pediatrician about it, but he feels that the drug could not have caused this reaction. I will try again and try to discuss what you have mentioned. The problem is that there is only one ANS specialist in our area - we have an appt but not until the end of June. We also have an appt in Boston Children's Hospital, the end of May with an EP pediatric cardiologist to look further into his cardiac issues. Hard to wait to try to get the help my son needs, and deal with all of this in the meantime. Dr. Akerman of Mayo clinic did reply briefly to my email and stated that just increasing benadryl and prozac was not the answer. He then offered to set up a 5 day appt/consult with us - but my insurance will never cover that....
So in the meantime my son does not sleep and continues to get lightheaded and have severe chest pain which not one takes seriously.
Thanks again - I will talk to the ped today, can't wait for this useless conversation It is tough because he is a great doc and used to having all the answers, but here he does not - but then again, he does not try to look for new answers either.
With a refusal to send records to another doctor- it seems absurd one would have to do this, but perhaps it's time to get a lawyer involved, who can supina the medical records, if necessary. Sometimes if they just know you have a lawyer (ie he/she writes them a letter), people might suddenly be very co-operative. Sure makes it sounds like either the dr. lost them or else does not want to get in trouble for negligence re: follow up on your son.
Re: prozac, if he's still having trouble with that, you might ask his doctor about slowly going off of it and trying over the counter things for mood, such as flaxseed oil or enteric coated fish oil capsules (don't take too late in the day to avoid a lot of dreams, etc..), Sam-e (naturemade brand, studies prove mood elevator), and foods that are a source of omega fatty acids that help with mood, such as macadamia nuts, walnuts, freshwater fish such as salmon and tuna, and pumpkin seeds.
If your son is still having trouble sleeping- rather than benadryl, which can cause/exacerbate tachycardia (I've had this problem with benadryl and P.O.T.S.), there are natural things one can do to try to promote sleep- they have a whole speel on that on medhelp (leastwise they did).
I feeling like screaming, so instead of doing so, I resort to the only place I ever seem to get any help and support. So - the pediatrician finally agreed with me that the benadryl was a bad idea. So I asked what could we do to help my son sleep. He said he was going to consult with a psychiatrist and let us know - that was 2 weeks ago. I guess the office has a month consult appt so we had to wait for that. So today I get a call from the nurse telling me that the ped wants to see my son face to face next week - Wednesday. I started off gently but quickly kind of got slightly agitated, when the nurse indicated that the reason for the need for an appt was to make sure we are all on the same page and to try some behavioral plan to help with his sleep. I reminded the nurse that we already did that - for 5 days I forced him to get up at 7 and kept him up all day, and then he still did not sleep at night. We followed good sleep hygiene -darkened room, no stimulation, etc. Why is it that no one will listen when I say this all started when they doubled his prozac to 40 mg and that perhaps the dysautonomia is messing with the metabolism of the drug. I asked if we could reduce the drug, give it at a different time, split the dose - plenty of viable options to try, but instead I get "behavioral plan" that we have to wait 5 more days to even talk about. This reeks of the "it is your fault, it only you would try harder and do it the right way - they you would sleep!" mindset. There have been 3 times in the last 2 weeks where he has been up for more than 24 hours, and that cannot be good for his health, especially his compromised health. Also, being up all night by yourself is very isolating and lonely - plus not sleeping does not allow him to go to school as he cannot function with no sleep. Arrrgghh! This is what happens when doctors who know so little mess up so much! And yet we wait for our two specialist appts - one is with an EP ped cardiologist the end of May and the other is with an ANS specialist the end of June. I had no idea of either of them is any good anyway.
I just feel like we are going nowhere and I am not getting what my son needs from any of this - it is certainly not helping him.
Thanks for listening. It feels good just to express myself and get this off my chest,
I just came across this thread. I hope you’ve had some answers and your son has felt more like himself. But I know how it is. I could totally relate to the lightheadedness, chest pain, and about a hundred other symptoms. This all started 3 years ago, a month after he graduated from high school. But that was after a couple years of going to doctors and ERs just to give him fluids. A neurologist diagnosed him with POTS but gave us absolutely no guidelines for living with this. I almost had to take a leave of absence from work, because between my son’s panicked calls and my having to research this difficult thing on my own, it felt like a full-time job. My son had to come home from college on a medical leave. Months later we were told about a cardiologist at the Cleveland Clinic. She put him on Hyomax 3x/day and did enough tests to find out his vagus nerve is not functioning correctly, which is the cause of his POTS symptoms. If my son is compliant with the meds, he can feel pretty normal . But nothing has been normal for 3 years. The panic disorder has been just as hard to deal with. That started immediately. I read later that there is often a dual diagnosis because those with POTS can FEEL like they’re having a heart attack or stroke. He was put on Paxil (1x/day at night-time) too and Seroquel as he started getting paranoid. His life just went up in smoke. So much to deal with at such a young age. He was a happy-go-lucky athlete (runner) prior. After being on Paxil for almost 2 years, he slowly went off of it without telling me (as soon as he moved in with friends), and the anxiety that built up from ongoing symptoms has gone over the top now. When he is compliant with the Hyomax, he could be asymptomatic for good stretches of time (even though he couldn’t return to doing all things), so we often have a difficult time determining if the symptoms are POTS or panic as one ramps up the other. Vicious circle. So much more to the story, but I’ll end here. I could tell from your posts your frustration and worry. I just want to let you know that I can relate.
Thanks for the reply. I had not been following this thread as I had sort of moved on, but I do appreciate your input. I am sorry that your son has had so much trouble and that his life and yours has been so impacted by his illness. My son has actually gotten better - not from any advice from any of the many doctors we saw. We waited many months for some appts with out of town specialists. We went to a renowned EP cardiologist in Boston, who tried to diagnosis all of his myriad of symptoms as purely depression. Yes he was suffering from this, but not until after he got sick. He advised behavioral therapy. We then ended up at a neurologist who we originally tried to see for ANS issues, but this dr is also a migraine specialist. He thinks all of my son's episodes, all of this, was due to migraines. Migraine can mimic stroke, seizure, and can have strange visual symptoms. This diagnosis really made the most sense and my son is in fact doing very well now. He is on an antidepressant, and that may even be keeping the migraines away. We have made some changes in his life - school, etc, to try to reduce stress. So far, so good.
Good luck to you and your son. I truly hope he can get back on his meds and do better.
HI- I just came upon your post and recognized my son and our last two years. It has been hell. I was thrown out of a neuro's office, told by a psychologist that the only thing wrong with my son was me. After 6 months, we went to Yale Vestibular Clinic and were told It's ANS/brainstem dysfunction, triggered by a vestibular trauma. I have doctors who now believe me, but have had him on effexor and gabapentin for over a year. I just can't believe that there are other children like my son. How is your son doing?
I wanted to respond since I was notified of your post. I am glad you have found a dr that identified the problem and is treating your son.
After two trips to Boston Children's hospital, numerous specialists in our area - Burlington, VT, we finally saw an adult neurologist who specializes in migraine. He thinks all of this is some sort of complex chronic migraine. My son was placed on different depression medicines and they can act as a migraine preventative. So far that is working. His ped tried to reduce his dosage last fall - a huge migraine happened.
My son is doing well - back at school, straight As, working parttime, being a teenager again. I guess the migraines disrupt certain areas of his brain that affect vision, blood pressure regulation, speech. Migraines are like small brain accidents so preventing them is the best course of action.
I look back on that time and am amazed we got through it. I felt like I was losing my sanity mainly based on how doctor's treated me and my son. A renowned cardiologist in Boston thought my son should see a psychologist to help with his mental illness that was causing all of this. Many other drs assumed drug abuse or faking symptoms.
We look up to drs and think they have all the answers - so not true, they are human and fallible.
Good luck to you and I am glad you are getting some answers