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DizzyGirls

Nadolol for POTS related seizures, misdiagnosed as "psychogenic seizures"

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For those of you who have tremors or POTS related seizures, I think I might have run on to something.  It was new to me, but some of you may already know this.  My daughters have been having a lot of trouble with "seizure like" episodes.  So much so that my oldest had an inpatient EEG study done at Stanford.  They said she has "psychogenic seizures" and that it is an emotional reaction to being chronically ill.  Well, I didn't buy that for a minute, especially for her.  Because there was mention that these episodes could also be related or made worse by their POTS, I began my research into beta blockers as both girls had a switch around the time these episodes had started.  I found that there are non-selective and selective.  I knew of the two types, but not a lot.  We have since discovered that the metoprolol that they were both on (a cardiac selective beta blocker) was doing a great job at taking care of their tachycardia, but there was something in the propranolol (a non-selective bb) that both had originally started with that was helping their brain.  Why they get these episodes, we may never know.  So, while we were still at Stanford, I messaged the girls' cardiologist and asked him to please find a non-selective beta blocker that wouldn't lower their bp too much.  So, at my daughter's follow up with her local cardiologist (he was anxious to hear about her EEG findings, boy was he shocked!) I explained what happened at Stanford, and he had done his homework, as well, and came up with Nadolol.  It's an old, rarely used beta blocker that seems to be controlling their POTS much better and also taking care of whatever was happening in their brains, thereby reducing their episodes.  My youngest still has them some, but only if she starts getting tachycardic.  She was worse, so it would make sense that it would take her longer to settle down.  The original propranolol that they were on worked the best, but since it decided to stop working one day, the Nadolol seems to be the next best thing.  I knew it wasn't all in their heads!   Now, if we could just find a cure for vertigo... off to research!!

Edited by DizzyGirls
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Thanks for sharing @DizzyGirls - that is very interesting! I take autonomic seizures and also have been on several BB's but I found carvelidol to be the best for me. I am glad they found some way to help your daughters. 

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I am sure that will be helpful for others to know about. It is really disappointing that somewhere like Stanford would label your daughter's seizures psychogenic. That is only slightly less offensive than "hysteria", & belongs in the same century as offering to perform an exorcism. 

It sounds like you have come across a useful agent & I hope it continues to do the job. Out of interest though has their cardiologist ever discussed ivabradine, which lowers heart rate with no BP lowering effect at all?

B xxx

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@Pistol- I'm so glad that you have a doctor that recognized your Autonomic seizures.  They are worth their weight in gold!

@bombsh3ll - I totally agree with your thoughts and got a good laugh at your description. I can't believe that they are diagnosing people with psychogenic seizures when they have POTS!  If someone isn't familiar with POTS, they're going to leave the hospital thinking that they have some buried psychological issues! So wrong on so many levels.  I have heard of ivabridine, but haven't researched it.  That's interesting.  I'm going to have to investigate that.   I haven't quite put the link to what action there is on the girls' brain with a nonselective beta blocker.  Just what exactly is it doing besides controlling their tachycardia? I have a feeling I'll never find out, but I'm going to keep reading. 

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@DizzyGirlsI did very well on Bystolic, a selective BB, for tachycardia.  I went off of it very reluctantly because we needed better control of my hypertension so I was switched to Coreg and ivabradine.  The Bystolic did not lower my BP so it might also be an option for your daughters.  The Coreg is great for BP but didn’t quite deal with the tachycardia so we added the ivabradine.  The ivabradine is very effective for me.  

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