DizzyGirls

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.

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!

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!

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!

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....

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?

WinterSown - Sounds like the effects it has is completely dependent on the person. Our chiropractor is always saying everyBODY is different. It is so true!

Have you ever heard of it causing convulsions though? I had actually looked up Sensory Processing Disorder this morning. There's some long articles out there on it. How on earth do you fix it? I'll check out the link you sent. They keep saying psychogenic. I think more autonomic.

No, they aren't 100% sure. But, the way they talk about their seizures, they've got their minds made up. My daughter had an episode today on the way home from a doctor appt. It was either the bright flashing metering lights on the freeway, or someone's blinker signal, those kind that have the 3 flashers in a row. Doctor we saw earlier today said that the EEG was only a brief glimpse into her condition. A commercial, if you will, but she is a movie.

My daughters have been having a real hard time lately and we are not sure, neither are the doctors, of what is going on. The more I think about this, however, I am coming back to Dysautonomia. So here's what happens: flickering lights - cause my youngest to flutter her eyelids, become unresponsive and, if not removed from the situation, goes into convulsions. My oldest gets the fluttering eyelids, unresponsive, then mild tremoring/convulsions. They have both had EEGs and didn't show anything except said it looked psychogenic. I've really grown to hate that word! But, here's the kicker, it's not just sight, it's sound as well. A helicopter flying overhead for too long, too much commotion, loud noises and low bass noises. It doesn't stop at sight and sound, it goes to vibrations, too. The rumble of a low motor or machine, and earthquake, etc. My oldest daughter's response is usually severe vertigo, and my youngest has been convulsing a lot. It's all exhausting. The oldest spent last weekend in the hospital because we couldn't stop the vertigo and she was tremoring a lot. They were rolling her down the hallway to have a CT scan done, and the length of the hallway caused her eyes to flutter a lot, then her arms started moving. They bypassed the CT and got her straight to the back to be seen by a doctor. Have a seizure, that's one way to get in quick!! They are really hypersensitive to all stimuli, so much so that they can't really go anywhere or do anything without having a big attack. Wouldn't want to have one of these in public, that's for sure. I've heard the term pseudo-seizures, photosensitive epilepsy, and Sensory Processing Disorder. Both have the same issue, but their local neuro (who is usually a really good guy), seems to want to blame the youngest daughter's on psychogenic issues. This is definitely not all in her head. Well, it IS in her head, just not her mind. The oldest, they don't know what to make of her, but are trying to get her into a long-term video EEG. This is proving to be more challenging than we had expected, however. Everyone is scheduling out into May. Has anyone ever heard of any of these things happening? Just seems like everything that they see, hear, or feel illicits a drastic reaction.

Thank you both! Haven't bought it yet. Still researching. You caught me in time!😁

Has anyone had any experience with the Vecttor Electrical Stim Machine and Dr. Rhodes? He is from Texas, a podiatrist actually, but has done extensive research into the Autonomic Nervous System and has invented this machine that has helped people with CRPS and the like. Actually found out about him through someone that had actually been effectively helped (cured) with their CRPS with this machine, instead of the other way around. Had a long phone conversation with Dr. Rhodes this morning, and he actually knows more about the ANS than any other doctor I've dealt with, and I've dealt with many! Before we make a very long and difficult journey, I would like to do my research and hope for some feedback.

I'm wondering.... has anyone here been diagnosed with epilepsy? My oldest daughter has a referral to the Epilepsy Clinic at Stanford because a very well-reputed cardiologist thought outside the box and wants to investigate the possibility of my daughter's vertigo being a type of seizure. I recently discovered that my youngest is getting "flicker vertigo". Our LED candles in one of the rooms was causing what I think might be an absence seizure. She gets real tired, can't talk, her eyelids will flutter a lot, she stiffens up, and then when she starts coming around, is kind of tachycardic. Thought this was POTS at first, but I'm thinking otherwise right now. I looked up Flicker Vertigo and her reactions are a textbook description, but, oddly enough, my daughter said it isn't like her regular vertigo, however. She said it's different. Both girls have EDS and POTS and was curious if there are any other POTSies out there who experience this.

I agree with Pistol (well said, btw!). I would not move because you and your family members have POTS. It doesn't matter where you live because it's not environmental. There are people on this site from all over the world and we all have POTS. I do not, but my two daughters do. Theirs is caused by Ehlers Danlos Syndrome. Others have autoimmune issues (my daughter has both). Some people find help in adjusting their diet, sometimes our diets are adjusted unwillingly through MCAS, gastroparesis, etc. Winter is hard, even here in "sunny" CA (ha ha, it's dark and rainy!). Hang in there and God Bless!

We went to Stanford, as they have the only one on the west coast of the US. My daughters' insurance covered it because there were no Autonomic Clinics within the providers that they contract with. So, in their case, they had to make an exception and cover it. Yes, it was well worth it. We saw Dr. Jaradeh, who was phenomenal! I didn't have to really tell him what was going on because he could see it by looking at the girls. They both had tachycardia just walking in the door, loose joints (diagnosed both with EDS), blood pooling, etc. Of course I had to give him their medical history and symptoms, but didn't have to explain how they were affecting them. That was such a relief! Now, all this being said, I would not continue with them for follow up. His PA, who I thought was really good in the past, has made some poor recommendations since that first visit. Dr. Jaradeh doesn't do follow up, he's just too busy. We had to wait about 5 months for our appointment, but I've heard since, that the wait time is about 13 months. The girls had the TTT as well. It has been an invaluable resource as our current cardiologist, who is very POTS savvy, asked if they had ever had testing done and where. I told them yes, TTT, and Stanford. His reply was "excellent". So, it is worth it just for that alone. It gets you in a lot of doors.

Like StayAtHomeMom said, autoimmune. I would have your PCP run an ANA test to see if it comes back positive. If so, the titer should be checked as well. My daughter was having fevers like that for quite a few years. Her ANA came back high enough for the Rheumy to say it was a "true positive". He gave her the option to try Plaquenil. It has gotten rid of those fevers. They can really make a person feel bad. She has suspected RA.

How is your son doing? My daughters have had vertigo for 10 years. Both seem to be caused by dysautonomia. The Epley manuevers and related ones don't help at all, instead they make it worse. My daughter passed out while PCP was trying to do the Epley on her. He couldn't figure out why she wasn't responding to it! Their vertigo isn't inner ear based, it's autonomic. My oldest daughter's is most likely a mix of migraine related vertigo and autonomic. My daughter has the same reaction your son does when standing. Her BP tends to drop. She's on Metoprolol right now and her POTS is much better. Vertigo is still very bad right now, however, but she has after-effects of multiple spinal fusion last year and it does affect the vertigo. I hope your son gets better soon. Vertigo is so extremely debilitating. If he hasn't tried something like meclizine to calm it down, he might give it a try. Benedryl works for some people too, just makes you sleepier!

My daughter's ANS testing came back with a lot of things out of whack, but when she has labs run for other things, a lot of times her blood work comes back completely normal, even though it's very clear that something is wrong, i.e. bladder infection, RA. Her new rheumy was commenting that her labs came back low, which he said was good. No immediate organ failure, no inflammatory markers, she wasn't complaining of pain in her joints, etc. Well, what he doesn't know about my daughter is that she doesn't complain until her pain is at least a level 10! She shoved her hands out to him and said, "well, my hands have been hurting some." She had nodules on her joints as well as swollen joints. He went, huh... there's no markers indicating this level of inflammation, but yet you clearly have inflammation, even nodules. I'll give you the option to try some plaquenil and see if it slows things down. It's been helping some. Just because you're labs didn't come back blaring, doesn't mean your POTS doesn't exist. Could very well have been the tech running the test, as well. Where did you have it done?

You might tell the next doctor who disregards you like that.... "the absence of evidence (according to her) is not the evidence of absence." Both of my daughters have issues with food. Both of them are lactose intolerant and one is now gluten intolerant. Food also does affect her POTS. She's also got MCAD as well as EDS, Hashimoto's, and possible RA and/or lupus. Just because that doctor hasn't put 2 and 2 together, does not mean it can't happen!! That just irritates me to no end! You hang in there and know that you've got a ton of support here. I couldn't have made it this far as a caregiver without their help.

Sometimes my daughter takes melatonin if they persist. She can also get bad tremors as well, which takes something a bit stronger to control. Hers are most likely due to her severe myofascial and muscle spasms from her c-spine fusion last year. If you have things like that, a warm rice sock helps tremendously. Also, if you have pain that's uncontrolled, that's a definite trigger for her as well. It's miserable, though. Hope you can get this calmed down soon.

This topic interests me greatly, as this is my daughters' primary and most debilitating symptom. Theirs is autonomically related. It's also a form called visual vertigo and if not kept under control, it can develop into rotatory vertigo. That has become increasingly difficult to do. The Epley maneuver (or the like) does not work on them. Makes them pass out. There was a couple of exercises that my oldest daughter had with her PT that was part of vestibular rehab. She could do them really well, but didn't improve the vertigo. For my girls it's ANS controlled. They take a variety of meds to help. Most of the time that works well, but for my oldest, she's been just miserable lately. Everything sets it off.

Both daughters (20 and 22) take florinef 0.1mg a day. They do very well on it and would be passing out a lot if they didn't have it. The only time they have trouble with it is when the doc tries an increase. It gives them bad headaches. So, 0.1mg is all they need.

I think a variety of people faint in a variety of ways and doing a variety of things, but my guess is that you fainted due to the blood not making it up to your brain fast enough because you were standing. The longer you stand in one spot, the more the blood pools in your legs and feet. Would imagine you might have been a bit tachycardic, as well. My youngest fainted last night because her heart rate kept going up and she just passed out while changing positions from sitting, to an attempted stand. I gave her a bit of her propranolol and in about 20 minutes, she was feeling much better.

Hi bombsh3ll! - I just wanted to clarify that my daughter DOES take a beta blocker, metoprolol. Without it, her heart rate gets up to the 150's. So, it is necessary. What I meant was that some doctors think it should be lower than the mid 80's of low 90's for her to feel better. Just making sure it doesn't jump to the 150's makes her feel a lot better! Everybody's "low" seems to be a bit different.

As far as exercise, our chiropractor always says "light done right". Doing what you are doing sounds perfect! Everyone is different, as they've all said above. I do have friend, however, that had severe POTS as a teen and she would pass out at school, in restaurants, walking down the street, etc. then she just kind of "grew out of it" as they say. She's older than me, about 65, and quite a few people in her family have EDS and POTS. We compare notes all the time! She's the only one that I know of, however, that actually improved as she aged. EveryBODY is different!😊