Selective/Nonselective Beta Blockers and Neuro Symptoms

[DizzyGirls]

I've been doing a lot of research lately in the use of selective or nonselective beta blockers.  I read a recent thread about it as well and thought I'd throw this into the mix!  Both of my daughters were on Propranolol for a while and it was working well.  Then, all of a sudden, it just stopped working, in both of them!  So, not knowing, asked their cardio about a more selective bb.  He said "sure"!  How about metoprolol.  Might not make them sleepy and it works on just the tachycardia, shouldn't lower their bp.  Both have a tendency toward very low bp.  Ok, great!  Around the time their propranolol stopped working, however, they both developed these strange neurological symptoms.  Movement, vertigo, convulsion, tremors, spasms.  Also, an intense sensitivity toward any stimulation.  Long story short, I narrowed these neuro symptoms down to around the time of the propranolol that stopped working and the switch to metoprolol.  Asked their cardio recently about these issues and told him about when they started.  I asked if he supposed their brains needed the nonselective beta blocker instead of just the selective cardiac blocker.  He said it definitely could be, but wasn't aware of any research out there that had been done on the use of nonselective beta blockers to control neurological symptoms.  Anybody have any thoughts or personal experience with this?  Just thought I'd ask!

[Pistol]

@DizzyGirls - I cannot actually give you a scientific answer to your question but I can tell you this: I was on several BBs ( Metoprolol, Bystolic, Propanolol ) and had some relief - temporarily - with one or the other of them. Nothing ever lasted, the one that eventually helped my PVC's and tachycardia was Carvelidol. However - what controlled my HR and elevated BP was adding a calcium channel blocker to the mix. It took YEARS to find the right combo in my case, so I can tell you that it is not necessarily ONE single med that will bring the relief - it most likely will be a combination of different meds that help. --- I know that this is frustrating but it is often the reality. --  Best wishes - stay strong!!!!!

[outofadream]

Hi DizzyGirls, I wondered if you would feel comfortable saying more about the sensitivity and movement symptoms your girls have been having? The reason I ask is because a couple years ago, I developed bouts of very strong sensitivity to things like light touch or sounds, and also some intense jerky movements. I spoke to my neuro about both, and he hypothesized that increased adrenaline was overstimulating my nervous system, leading to the sensitivity and possibly "spilling over" into the movements. I don't know if that would relate at all though, since mine wasn't triggered by a change in beta blockers. 
I'm sorry your daughters have been going through such a hard time both in finding a med that works for them, and facing such tough neurological symptoms I hope you guys get some better answers and relief soon!

[DizzyGirls]

Hi Pistol!  Finding the right beta blocker is turning out to be more of an ordeal than I had hoped!  The propranolol was working so well for quite a while, too.  Ugghh!  In talking with the cardio, he was rummaging through his brain to come up with one that didn't lower bp too much, as theirs is low already.  Both have been going through increased tachycardia as of late.  Not sure what's triggering that?  Change in weather is certainly adding to all of this.  Had some real heat, first of the season, now cooler.  Not cold, but comfortable, but worse again.  Oldest daughter is going in for her inpatient EEG in a few weeks, too.  Bringing her sister, too.  Hope they both have some of their episodes on video so that the doctors there might be able to see, as well.

Hi outofadream!  Your neuro has some good thoughts!  I was wondering the same thing!!  Sometimes I think our bodies just change, as well, not necessarily from a switch in meds, but just because.  My oldest daughter's episodes started with a great increase in her vertigo, then her eyes would flutter, followed by hand/arm movements, and sometimes upper body movements.  Most times there is a migraine involved, too.  Most stimuli will trigger it:  flickering lights are a big one, strange sounds on tv, pictures in a magazine (too much on a page, optical illusions), vibrations, and too much commotion.  Talking, too.  Both can have what looks like absence seizures when they get to talking too much.  By too much, I mean just carrying on what the rest of the world would be a normal conversation.  My youngest has more violent movements.  Arms go flailing about, legs kick, upper torso bends back and forth, head jerks violently back and forth.  Airplanes, helicopters, loud bass music all are big triggers.  Too much commotion will stop her in her tracks.  Also, flickering lights.  She looked at one of those Photosensitive Epilepsy Trigger warning videos on youtube and her eyes started flickering and head started twitching.  That was the biggest trigger that started it all.  Actually, it was our LED candles that we have that was the very beginning.  They have a little flicker to the imitation flame.  Then she had watched the youtube video that started everything getting worse.  Just seems that when there wasn't a beta blocker crossing the blood brain barrier to calm things down, they got worse.  I did find a medical journal article on beta blockers being used to control essential tremors.  So, maybe there is some credence to this. 

[p8d]

I tried several betas, selective and non.  The non-selective were a nightmare first time around, 4 years ago.  I was very unstable at that time.  I was also very sensitive to lights/movements/ smells etc.; traveling in a car was horrible as were tv shows/movies that panned quickly. Flashing lights were the worst.  I still have some trouble with very quick panning.  The selective beta that helped the most  with HR was bystolic.  It had almost no effect on BP which was lower at the time.  BP has been going up (I am hyper pots and 57 years old) the past year or so so we switched to carvelidol which is non-selective and works great for BP but not HR.  For the hyper pots I took methyldopa which had no effect on BP and then clonidine which lowered BP and helped with adrenaline storms, including hypersensitivity to motion and symptoms that you describe but the rebound hypertension was terrible.  I am now on guanfacine Er (thanks Pistol!) which helps with the hyper symptoms quite a bit.  It doesn’t lower my BP much and doesn’t help HR so we added ivabradine for HR control with no effect on BP.  Like Pistol it’s taken years to find meds that address the various issues and constant tweaking and changes as the weather warms up/cools off and my body stops responding to meds.  I think that I can handle the non-selective BBs now because I am stronger and need the hypertension control.  2.5 years of physical therapy have helped a lot.

[Peter Charlton]

I would say my experience is the opposite. I had no form of Dysautonomia, no nervous system problems at all, until the day I took the selective beta blocker Bisoprolol.

Been off all medication for two years but my nervous system is still a mess. People assume I am drunk due to the way I walk now and the balance issues I have.

[outofadream]

Hey DizzyGirls, just been thinking of you and your girls and wanted to check in. Any luck in finding a good beta blocker that's working better for them? The movements do sound really similar (the flailing ones in particular...those are tough!). I think I've had that too where the overload gets so bad it's like the world stops...just freeze, can't talk for a brief time, etc. I sure hope the cardio has some ideas, I know it's got to be hard to cope when there's so many potential triggers!

[DizzyGirls]

Hi outofadream!  Well, we haven't seen the cardio yet, that's next week.  I did send him a message to make sure he had done some research as to the proper non-selective beta blocker both girls might need.  Nurse said she would make sure he had done his homework!  So this happens to you too?  My daughter had an inpatient EEG recently at a very well-known university hospital, and they said they were psychogenic and she needed therapy!  Could have strangled the doctors!  Thanks, she's just fine, and we'll be seeing her local cardio who doesn't think it's all in her head!  Soooo frustrating!  You might want to check this video out, it's by a Dr. James Riviello (Vimeo.com - Autonomic Seizures & Autonomic Epilepsy) and he's a pediatric epileptologist and was speaking at the Dysautonomia International Conference.  A girl stood up and asked the doctor what he knew about psychogenic non-epileptic seizures (PNES) and he said that he would have had to exhaust ALLLL other possibilities before he would ever give someone that diagnosis.  He would send her back to her cardio for what he guessed she would need, a beta blocker.  I about jumped out of my chair when he said that!  It was a victory (a silent one for now) for we moms who are continually fighting for our children.

[Pistol]

Hello @DizzyGirls - thank you for sharing the video link to the lecture about autonomic seizures! I have been diagnosed with those and one of the case studies describes me to a T : I had a monitored event in the EMU with simultaneous EKG and EEG monitoring and my EEG flatlined during a seizure. My HR was going UP not slower. Also noteworthy is that in my case the seizures are caused by cerebral hypo perfusion - but not from vasodilation but rather by vasoconstriction ( meaning no circulation to the brain because nothing gets through the extremely constricted blood vessels ). That explains why I have extreme hypertension during those attacks. -- The video was very re-assuring to me because in the past I was seen in the ER many times for these seizures and most ER doctors were not at all familiar with the term autonomic seizures. Whenever my POTS symptoms got really bad I would go to the ER for IV fluids but often was refused because " I could drink ". This resulted in many unncecessary seizures in the ER or after ER visits and the refusal to give IV fluids resulted in me getting a port and now receiving weekly infusions at home. I have been on those for 8 months now and had exactly 0 ( ZERO! ) seizures since then, even during flares, and only a few syncopal episodes since September. 

I share your frustration with the psychogenic diagnosis - I was told by an uninformed physician that I was hysterical once!!!! I guess if symptoms do not follow what a doctor is used to it is easier to blame the patient and label him/ her!! But my autonomic specialist whitnessed several of my seizures and that in addition to the recorded episode in the EMU proved my diagnosis. I hope the cardiologist appointment will finally bring some answers!!! Best of luck - please keep us posted!!!!

[outofadream]

@DizzyGirls Hope the cardio has some good options for your girls! That's brilliant that you made sure he'd done his homework ahead of time and was prepared, haha.
It makes me so frustrated that everything the medical profession doesn't thoroughly understand yet they ascribe to something psychological. It's so terribly unscientific, not to mention harmful and disrespectful to everyone involved. I can imagine how you must have felt when the doctor said that, I'm sorry you and your girls had that experience (and you as well @Pistol, especially with everything you went through! I'm glad you got access to the IV fluids and they've helped!)
My issues for the moment are being defined as a "functional movement disorder," which basically means "something isn't working right, but we can't see it on any kind of scan." They did an eeg on me a well to try to rule out seizures, and that came back clean.
I kind of got the sense that movement-related issues are a field that there's still a lot unknown and more research is really needed. And there are a lot of downright shameful assumptions. Even the doctor who diagnosed me made an off-hand comment that maybe it had something to do with the "stress" of living with a chronic illness (she also didn't know anything about POTS, which probably didn't help).
I've noticed my movement issues are often worse after being up on my feet awhile, which certainly seems to suggest there could be an autonomic connection somewhere (and I think my POTS doc suspects there could be one too). I really appreciated you mentioning the video...anything that clarifies how this all hangs together is helpful!
But mostly, I hope your cardio has some good selections for beta blockers lined up for your girls and that they get some relief very soon Will be thinking of you all, and please do keep us posted.

 

[HangingByAThread]

ALL the neurological problems you described your daughters having (other than the seizures) sound exactly like what I experienced BEFORE I was put on a low-dose of Methyldopa by Vanderbilt.  If nothing else helps, you might want to mention this to your doctor.  It works by stimulating the brain to decrease the activity of the sympathetic nervous system.  Before a full workup by (several) specialists, I really thought I had something like Parkinsons or MS due to my odd neurological symptoms but it turned out I was hyperadrenergic.  I also have the tendency to have low blood pressure but I just load up on salt tablets and water and that offsets the blood pressure lowering effect of the Methyldopa.