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About DizzyGirls

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  1. Both my girls take florinef to raise their bp. Lately, my oldest is having trouble with her bp just dropping. It was actually 72/54 hr about 90 something last week. Going to cardiologist this week. Might ask your doctor for some florinef. It's a lifesaver!
  2. Yes, my daughters are the same. For them, their adrenaline has to settle down, then they crash.
  3. Hi CarolS - The IH is most likely just a "side note" along with their other issues (could also be due to her cervical issues and spinal fusion). Both of my girls have POTS that stems from their EDS. My oldest has migraines, vertigo, and newly added seizures. The seizures are non-epileptic and are most likely due to her POTS not being well-managed. My youngest is having the same problem with the seizures and she has vertigo, too. The seizures are most likely as a result of a switch from propranolol (a non-selective beta blocker) to metorprolol (a cardiac blocker). I think they were benefiting from the non-selective aspect of the propranolol, but it just stopped working.
  4. 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.
  5. Yes, very interesting! I always find it amazing what actually helps POTS issues! Sometimes it will help one person, but not another. I agree with you that it would be a very good thing to have in the arsenal for very critical times. My daughter has had to have 3 lumbar punctures to release her pressure. It's sort of random how and when it occurs, so we'll be glad that it's not flaring right now. Hope your daughter can turn around on her own. Those intracranial headaches are horrible!
  6. I'm not following the CO2, but both of my daughters have tried Diamox. It made both of them pass out every time they tried to stand up. My oldest gets pseudotumor cerebri and they had wanted to use it for that. Diamox is a diuretic, so no wonder she was peeing like crazy. But for my daughters, they were losing too much salt and their bp was really low.
  7. Thank you! Yes, going to discuss with her cardio on Monday, nurse said he wasn't in today. Think she does need more salt, but she's cut down on a lot of things that are high salt. Like bread, for one, and were not eating a lot of soup right now because it's warm weather, etc.
  8. Does anybody's blood pressure just drop in the late afternoon and evening? My daughter's just decided to start doing this lately. She has been getting really, really dizzy later in the day and started taking her blood pressure consistently and it's been around 72/48 hr 104, 86/53 hr 99, 80/47 hr 88, just to give you an idea. Not sure if this is new or if I'm just noticing it. She's been using a little extra Florinef to get it back up, but it's kind of stubborn. Anybody experience this too?
  9. 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.
  10. Hmmm, I don't know? I like broccoli sprouts though! Are you affected by the change in seasons? I know that affects my daughters greatly! Especially if it's a high allergy spring.
  11. 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!
  12. My daughters have been dealing with vertigo for the past 10 years. It has morphed into different types over the years, but what we do know is that POTS has a whole lot to do with it. Several years ago, my youngest had a horrible bout with gastroparesis, had a feeding tube for 2 months. During that time, her diet was anything but normal. She craved ramen noodles and Lipton noodle soup. During that time, she had been dealing with horrible vertigo as well. As the weeks went on and all of this salty soup was consumed, I noticed that her vertigo had improved some. It wasn't gone by any means, but better. She was moving around the house (no rides in the car yet, or normal activities) without as much caution. I started looking up vertigo and high salt intake. I stumbled across POTS and here we are! The two definitely go hand in hand. Make sure you are consuming enough salt, as it might help. My girls also take a benzodiazepine and use meclizine. The oldest recently saw an epileptologist, as an EDS/POTS savvy cardiologist recommended her to him in case the vertigo was a form of seizure. After seeing him the other day, he thinks it might be a complex issue of POTS and migraines. He was trying to explain it to where I could understand, but, even after researching every day for 10 years, it was a bit much! He said it is not a simple POTS or migraine issue, it's very complex, he said. She's going to have an inpatient EEG study to see if he can pinpoint the issue. He would like to do a TTT while my daughter is hooked up to the EEG leads so that he can watch her brain activity and her blood pressure/heart rate all at once. That being said, my daughter is having a hard time convincing herself that it would be a good idea. Not sure how your TTT went, but it took my daughter weeks to recover from hers. All this being said, it is possible to function with it, but that may include different meds. Make sure you are doing everything possible for your POTS. Are you on florinef or any beta blockers? Good luck to you!
  13. So this is all very interesting! My daughters have had vertigo since they were 12 (20 and 22 now). Meclizine has kept it at bay for a long time, but recently has taken a nose dive. Oldest has cervical instability (fused from C3-T4), but has been dealing with unrelenting vertigo, migraines, lightheadedness, tremors, etc. Saw a neurologist at the Epilepsy Clinic at Stanford yesterday (came highly recommended by a very EDS savvy, well respected cardiologist) who thinks it might be a complex issue with uncontrolled POTS (which we thought was controlled) and migraines. She'll be doing an inpatient EEG monitoring study soon and he mentioned doing a TTT while she's hooked up to the EEG. My daughter is hesitant about that one. The last TTT she had took weeks to recover from. He didn't push her, just said if she was up to it, might give him more information. Something to do with the way the brain and nervous system reacted along with her bp. We think a switch from propranolol (which just stopped working for both of them) to metoprolol may be an issue. The metoprolol is a cardiac beta blocker, whereas the propranolol blocks all the betas! Thinking the girls both need something to block more beta waves instead of just the cardiac ones. Hope this helps, Aida. We thought the girls' was under control, too. Hi Kim! - I've not heard of low flow POTS! Definitely going to have to go look that one up!
  14. My youngest daughter had been falling a lot, but only in the evening. She got to where she was falling 20-30 times a day. Legs would stiffen and become uncoordinated, then she just started falling. Went to Autonomic Neurology PA who said, "oh, she falls so gracefully! She'll not hurt herself (as she's falling down the hallway)! It's psychogenic, just need some cognitive behavioral therapy and she'll be just fine." Turns out she has Dopa Responsive Dystonia of which 10 minutes into her second dose of Sinemet and she could have strutted down a runway! Of those who have EDS, 75% who have dystonia have Dopa Responsive. She would have known that if she would have kept up with EDS. Oldest daughter went to ER recently due to what we thought were seizures (after seeing Epilepsy doc yesterday, thinks it might be complex issues with her POTS). They did an EEG, let her tremor and convulse for at least an hour. Doc says, "This looks just like anxiety!" I looked at her and said "we've got a long way to go before you get to label this anxiety! You've let her tremor and convulse for over an hour, yes, she might be feeling some anxiety about now! Wouldn't you!!!" The list goes on....
  15. JimL - yes, it does matter on the time of day. The later it gets, the worse they get. The more my oldest (with the vertigo) is up and around, the drastically dizzier she gets. StayAtHomeMom - Yes, that's what they are saying. One doctor even had the nerve to say it was anxiety. I jumped down her throat in a big way. No way was she getting away with that one! Got a message back from her beloved neurosurgeon to see if he can help guide us. Was your sister in law's autonomic?
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