DizzyGirls

Sarah, I really don't know much about epilepsy, but the auras you listed are all too familiar to mine and my oldest daughter's migraines. What's weird too, is that she gets an aura (vertigo) before a migraine begins, but can have the vertigo triggered by an outside source without it developing a migraine. For instance, a neighbor was having insulation blown in their house and there was a generator/compressor, something of the sort, in the van and the sound was so low and loud that she and her sister could feel the sound waves in their heads and after a minute or two the vertigo started and was quite severe until I was able to get them out of the house and let it calm down. Took a few hours, though. Same thing happened when an ambulance and fire engines came next door for our elderly neighbor. The flashing lights immediately triggered their vertigo and had to move to a different room where they couldn't see the lights. It would almost seem as though sometimes the vertigo is the aura and sometimes it is the result of a trigger. I would very much like for them to have an EEG done. I'm trying to get up enough courage to approach our neurologist and bring this up. He and I often don't see eye to eye and I'm a little apprehensive. My oldest actually wore a portable halter monitor for 12 days recently. I think it was called a Zio patch. Sounds similar. Might be a real eye opener. I know this is sort of off topic, but thank you very much for your insight into this. I know that you have a form of epilepsy and it was mentioned in one of the medical journal articles that I read that there was suspected a connection to people with this and Dysautonomia. A great doctor once said that the mothers would diagnose their children and I think it is because of all of the people in this group and others who are willing to share their medical histories so that we mothers can find out what is wrong with our children (and ourselves!).

No, they haven't been diagnosed with epilepsy and my oldest does have vertigo with her migraines. But, the youngest does not get migraines and their vertigo is triggered by these strange things like flashing lights, booming sounds, busy patterns. The seizures would then be the vertigo. They've been diagnosed with Dysautonomia and they each had a TTT done at Stanford with a positive for POTS, also. The one thing that has stumped all of these very knowledgeable doctors is their vertigo and how it is triggered. This seems to be a fairly new area of epilepsy with not a lot of doctors being familiar with it and also agreeing. In one article I read that a lot of the subjects that they were studying in regard to the epileptic vertigo were adolescents and they felt there was also a connection with those people and Dysautonomia and POTS. I'm grasping for straws, I know, but it's the only area of my girls that has yet to be pinpointed and treated with success. They are being patched together right now.

Has anyone ever heard of a condition called "epileptic vertigo"? My daughters have EDS type III, Dysautonomia, and severe vertigo. I googled Vertigo and Epilepsy the other day and stumbled across some articles on it that also included people with autonomic issues. I know there are some "dizzy" people on this site that have suffered through vertigo as we have...just thought I would throw out the question and see what you all know!

I agree with Katiebug, the chiro we see uses an activator and does manual adjustments. She has learned to approach my daughters with great caution, but since we have been going to her for a while, she has really learned what to do and what to just leave alone. Sounds like the response of your chiropractor was that the maneuver was too much for you and you wouldn't be doing that again, was a good response. Probably will need a lot of ice or heat, whichever helps you get through this.

We use ThermoTabs also, but a friend also recommends Nuun tablets. Think you just add them to some water, stir and drink. If I recall, though, they did contain either sucralose or stevia leaf extract. Both are not tolerable by my teens, gives them stomach cramps. But, I know the fitness people seem to like them.

Does she like Lipton noodle soup? When I was putting two and two together with my older teenage daughters, the one thing that I noticed a difference in was that my youngest daughter was eating noodle soup by the gallons and my older one does not like it. My younger one was also improving. It was the soup! The difference in the salt intake. My youngest was just coming off of her second feeding tube and could only tolerate the soup at the time. She still eats a lot of pasta as meat doesn't sound good to her anymore and the pasta is her carrier of salt. Parmesan cheese is also high in salt. I cook some rotini for my daughter, she sprinkles it with cheese (lightly, so that it doesn't set like a ton of bricks) and the sprinkles liberally with salt at the table. Katybug - I love salt on watermelon! That's how we used to eat it when I was a kid (not just a Baltimore thing!). Don't you miss those great big watermelons with the big black seeds? They were so sweet! Can't find them anymore.

Katie, Thanks for the info! I'll relay it to my daughter, it may give her some hope! She goes in a couple of weeks for the second shot. We have to stick with this as we have no other options (severe migrains prevent her from using the pills) and her periods and autonomic symptoms are too severe without. Spring has hit out here (SF Bay Area) full force and she has been feeling downright miserable. She's also fighting a yeast infection that she's had for almost four months.

If you are near Stanford, they have two great doctors that I know of, Dr. Jaradeh, and Dr. Muddippi. I have a friend who sees Dr. Muddippi and he is really great with follow-up also. Dr. Jaradeh is a wonderful, wonderful doctor (only doctor I have ever taken my daughters to that I didn't have to be the doctor), but I think he is more or less a diagnostitician, but Dr. Muddippi also is good with follow-up. I don't think you would be at all disappointed with either one, though. We have also been to UCSF's new autonomic clinic. If you are already a patient there, you might have a chance of getting in, but I heard there was a screening process, so I'm not sure they are open to the general public yet. It is new and they are a little slow getting organized. Don't give up, though!

I also don't know if it's a blood pressure drop or just a hormone thing, but my teenage daughters have had such a rough time with their periods (before, during, and a couple days after) that their OB/GYN has put one on the Depo-Provera shot and the other one on a continuous Lo-Estrin (a low estrogen) bc pill. Hoping a second Depo shot will help stabilize things a bit, but the daughter on the pills is doing much better as far as that aspect of her condition is concerned.

I was looking at those, but decided to try some knee high socks first to see if I wanted to put out that much money on them. I know I have a friend who uses the Tommy Copper ones. They are a little bit more expensive, though. I am still weighing the pants in my mind, though (these are for my teenage daughters), as the socks make your feet sweat and the pants would leave your toes free!

Oh, wow! A brochure! I'm going to print one out to each doctor that my girls see. Would save me some time, that's for sure. MommaHelen, Get used to the fact that you have to be the doctor. I've been to one doctor appointment in 18-1/2 years that I did not have to be the doctor. It comes with having a chronic illness that is yet to be in the forefront of a doctor's interests. My girls are 19 and 17 now. We are just now starting to see a couple of doctors that are educating themselves about Dysautonomia, or as their neurologist puts it 'autonomic instability'. He said he likes that term better. It explains it better to him. We live in the San Francisco Bay Area, where good doctors are thought to be everywhere. And, for the most part, they are. I read about a lot of people having to fly out of state to get to doctors that we can see locally. I feel blessed to be among those that don't have to travel, as my girls are having a very hard time right now. Travel would not be possible. I know what you are feeling, I've been there, done that. Hang in there, your child needs you!

I had a doctor recently want to prescribe my daughters pindolol for their POTS. When I noticed that it acts as a vasodilator, I wrote him back and questioned whether or not that would be a good fit for my girls. Everything that has helped them in the past has had a vasocontrictor property. In the end, we did not try that drug.

Thank you for the recommendations! I'll check them out.

I have a dilemma, my daughter's cardiologist wants her to try some form of compression - whether it be tights, pants, etc. My daughter would be much more likely to wear compression pants instead of the tights, but I am having a hard time finding the mm ratings on the pants. Are they just a little more snug than regular leggings? She needs 25 mmHg. The tights, as you all well know, are really uncomfortable under skinny jeans (itchy also). She's only 19 and would still like to be fashionable and also not roast with the tights underneath her pants. Trying to find a happy medium and also help her feel better. Any suggestions?

My daughter's have never known what it is to be "high energy", that being said, they don't know anything different. It was thought that they might have mito, but they are thinking that it's Ehler's Danlos with a severe case of Dysautonomia. They started showing signs very early in their lives. Lack of endurance and fatigue being the most severe back then. They were never able to go to school because of this, so we homeschooled. It was the best decision we ever could have made. So many options! They have grown to be very well-rounded and educated young women. I know everybody thinks that they must have missed all the fun stuff at a "brick and mortar" school, but when you don't have the energy to keep up, it's not a whole lot of fun. I just graduated my youngest (a semester early!). She is growing into being a wonderful artist and my oldest is half way through her first novel. Your daughter may have to choose things in her life that don't require a lot of physical energy. Not everyone is made to play sports, some of them have to be artists, writers, musicians! Best wishes to you!

I was just wondering if anyone with bladder issues, i.e. spasms, urgency, etc. has tried Anzo-Go Less? The main ingredient is pumpkin seed extract. Was hoping it would be with calming the bladder down. Sorry, it's AZO, not Anzo. I spelled it wrong.

Your story is all too familiar. I agree with statesof in that you have to stop and think how this affects your quality of life and it reminds you of why you go to doctors. Only you can truly know just how bad you feel. This is one of those invisible illnesses and what people can't see, they tend not to believe. It sounds like you most likely do have autonomic dysfunction. My daughters' pediatric neurologist prefers the term autonomic instability. That is where everything tends to affect the whole entire autonomic system - he's not much for just calling it POTS, says it's so much more than that. I also believe that the depression/anxiety goes right along with it. It's so hard when family makes you feel like your this malingerer, but you've got to ignore them (I know, easier said than done) and get yourself better. It has taken me years to finally find someone who has a general working knowledge of all this, but we kept persevering until we found him. There is much more information out there now regarding Dysautonomia and the word has gotten so much more attention in the last few years. Clinics are starting to be formed because doctors are finally putting two and two together. I tell my family that it's too bad that these discoveries didn't happen 20 years ago, my daughters would be in better health.

Katybug, Thank you for sharing this information. I have gone round and round with doctors regarding my daughter's "fever" that she's had since November. I am so glad that there is a doctor out there that can honestly say 'hey, I think your temp is higher than normal and that's not good - and oh, by the way, bet you're feeling awful'. There are times that I don't want to be told that story about it's not a fever until it's 100.1. Sometimes you just want the doctor to understand that you are feeling terrible. So glad you found that doctor! Sending you some of my favorite imogees in hopes that it will bring a smile to your face and that you feel better soon!

Thank you all for your help! I appreciate all of the words of wisdom from people who know. Katybug, That is an excellent idea about keeping a log of the most concerning things. Sounds like a good place to start. Since I started this post, I did receive a call from my daughter's cardiologist. He has some good areas and some areas that I think he is maybe not up on the autonomic part of this, but he could be a possibility. He increased my daughter's Florinef to 0.2 and she is not passing out in the shower any more. Still gets lightheaded some, but not as bad. I guess I was focusing on her heart rate too much and thought that it coincided with the blood pooling in her feet. Evidently it does not, and he was concerned with the fact that her feet were turning purple. That's when he increased the Florinef for 2 weeks and said that he might throw in a trial of midodrine if the Florinef alone does not work. Our cardiologist seems to be a little more proactive than the neurologist. Nothing is working great, but without the Florinef, it was a lot worse. So, baby steps. It's hard to watch your children feel so ill. Oh, and I have to give the cardiologist credit....he actually called himself. Not the nurse, but him! That has never happened at any of the universities that we have been too. Definitely a positive. So, we will keep doing what we do and hope this helps. The journal, though, that will keep me focused. Thank you all for your continued support. You people are the only ones who truly do understand. Best wishes!

jknh9, I agree with the lavender oil and it being too strong. I have heard that it works, but the smell! I know some people just love the stuff, but my nose is one of my most hyperactive of my senses and it would drive me nuts...but if a person could stand it, maybe rub some on your feet, away from your nose.

Thank you for your replies! I'm still trying to figure out what their goals are, and keep trying to "nicely" explain what our goals are. I feel like I will have to stick with these doctors as there are no other doctors in our area (SF) that I have found that know what to do with all of the symptoms. I see my bright daughter's health dwindling down by the day and get so frustrated that they can't see it too. We have been going there for over a year. This road is always a difficult one, as there are never enough doctors of this sort to go around to the patients that so desperately need them.

I've read about lavender oil being used. I know that there is a drug interaction with it if you take lorazepam. They are not supposed to be used together as the lavender oil seems to have the same efficacy as the lorazepam. I know my chiropractor recommends it.

It wouldn't be the first time, but I'm a little confused. My daughters have been battling Dysautonomia for a very long time, and POTS since their first onset of puberty. During this time we have been told many things by many doctors (sound familiar!). But, now that we are finally with some doctors that seem to have a clue about this illness, they won't prescribe anything to help it. Their opinion is that they are on so many meds already that they don't want to prescribe anything new. My response to them was that if we finally found something that actually worked, rather than my just patching them together, maybe they could get off some of these other ones that they don't like. I don't like them either! Maybe I'm presenting their illness wrong...I don't think so, but maybe. As with most of us, we have a better handle on this than the doctors do. I thought it was sort of a trial and error thing. If one doesn't work, you try something else. What does it take to get some of the right meds? Any helpful ideas would be much appreciated!

Marigold, Thanks for bringing this up again. My mom and I were discussing her low ferritin levels and her hematologist wanted to start IV iron again. She's had it before. He said that they would have to wait until it drops another point or insurance wouldn't cover it. We were thinking that it's probably part of her lupus and autonomic system. Incidentally, my daughter had a bone marrow biopsy a couple of years ago to check for mast cells, and an incidental finding was that she had no stored iron in her bone marrow. It makes sense with the whole dysautonomia.

Hi Shathaway, Thanks for sharing! At first I was blaming it all on the yeast infection, but after putting the pieces together, I think that it's more that the dysautonomia kicks up when there is an infection. Not that the infection itself is causing the fever. Just her body's reaction to it. Isn't this all so complicated!? She went to a NP gynecologist today, and when the nurse did her vitals, her heart rate was up to 125! The machine was beeping with a warning sign and everything! She looked at my daughter and asked if she was nervous, at which she responded "no", but I do have POTS.