DizzyGirls

I don't know of anything that can stop them from actually appearing, other than what you are doing already, but when my daughter gets one she takes Imitrex and it stops it in its tracks. They don't work on me, so I take Fioracet. It's an old drug, but it works. Migraines are awful. One thing you might try (check with your other meds first to make sure it doesn't interact) is a Sudafed tablet. I know that without that my migraines would be significantly worse. You might actually try a Sudafed while you are having some of these symptoms, don't know if it would help or not. I'm not a doctor or a pharmacist, so please make sure, before taking my advice, that you do a drug check to make sure you are not going to have some severe reaction to taking this with your other meds. Hope you feel better soon!

I think my youngest daughter has an overactive parasympathetic nervous system, versus the more common sympathetic (fight or flight) reaction. She doesn't have any stamina. It is just a real effort for her to do things. No energy at all. Her heart rate is really unpredictable, but when she gets stressed (even a little bit), it goes up and she passes out. Does this sound like parasympathetic? Any of you 'old-timers' with lots of research experience, feel free to chime in (as well as the new ones ). What do you use to treat this with?

Thanks Katybug! I'll check those out!

Yes, the answer is probably best found in the foods. I'm trying to juggle all these different meds - one for the ulcer that you take an hour before a meal, the baking soda capsules to take somewhere in between when you've last eaten, but not too close to when you are going to eat again, then all the rest of the meds. Uugghhh!! Clb75 - We are finding that the florinef is a much needed medicine. Don't think the cardiologist is going to be happy that we've made that determination, but trying to go off of it has totally thrown her whole system out of whack. The midodrine is helping, but I think she needs a higher dose. She only has a rx for 2.5mgs once a day. That's not enough to do anything. I do think we are going to start incorporating sandwiches again, she's been eating other things for lunch, but I am reminded that these are too important to cut out. It's been a couple of weeks since we've had Chinese food, too! dkd - Thanks for the input! Yes, pretzels! Lots and lots of them! Her esophagus starts slowing down at night, so she pushes her pills down at night with pretzels. They are dry, so it keeps the pills from melting in her throat. Funny thing you both mentioned condiments, I was looking at a can of olives the other day and was happy to discover that they have a lot of salt too! Myself, I could live on olives. Think maybe we should have these more often. The thing with my daughter is that it has to be hidden salt. She doesn't like salty foods, except pretzels and potato chips. Otherwise, you've got to hide it. Sounds like I'm back to my old label reading. Had to take that up when it was discovered that the girls were lactose intolerant. Think now I've got to be a salt detective!

I'm keeping a close eye on our little "experiment"! I do want to make sure this is producing positive effects and not too much gas. That wouldn't be good. Sure wish she liked salt more....would make this a lot easier. We are back to 0.1mg of the florinef. She was sooooo lightheaded and syncopatic without the full dose. Her vision was blurry all day long. She does feel so much better on it. Think we'll have to stick with some alternative for the salt tabs. Hopefully her stomach will be able to tolerate one irritating thing. I appreciate everybody's input!

Thanks for the breakdown, Tachy Matt (love the name!) Her PCP was the one who suggested it, but he doesn't know much about POTS. I've got confirmation on both, now! I will be careful, though, to make sure she doesn't use it with food. I was trying to remember his analysis from our visit yesterday and you just repeated it, so thanks!

I have an issue with my daughter. She's developing an ulcer. We are trying to go off of the Florinef and use Midodrine instead, but that's not working very well, partly because he only prescribed one pill a day. That doesn't do diddly squat. She's really lightheaded, she all but passed out in the shower last night (sitting down), and her blood pressure is lower than it's been in a while. Basically feeling really lousy. Between the Florinef and the Thermotabs, her stomach is always full of acid. I was wondering if anyone had tried using baking soda in capsules as a substitute for the salt tabs? The baking soda would also help her stomach. Please don't make me dig out my daughter's high school chemistry book!

Draven, that is a very odd phenomena that happens to you. I would imagine it's very unsettling. Just had to comment on the Florinef.... My oldest daughter is having some trouble with her Florinef in the way of intense migraines. The higher the dose, the worse her headaches in general get and the more frequent her migraines come. Sometimes it's hard to tell the difference between a regular bad headache and an actual migraine. She was suppose to take 0.2 mgs daily, that was awful, she's down to 0.05mg (half a tablet) and is feeling the effects of backing down on her dose. But, just wanted you to know that migraine intensity seems to be a problem with the Florinef. Best wishes!

We noticed an ability to get up in the morning much quicker. She has a horrible time getting up in the morning. It takes hours for her to be able to get up and around. This morning, though, she got up about an hour before she normally does. That's improvement! I can tell, though, that one pill a day isn't going to be enough. She is attempting to go off of the Florinef (having some issues with it) and is a little more lightheaded today, so I'm going to do a little research and see if I can add some more salt to her diet. I also think her salt tablets are wreaking havoc with her stomach. I was thinking about her fast heart rate yesterday, and I think the cup of coffee she had during the time the Midodrine was active was probably not a good idea. We'll have to wait until later in the day for the caffeine. Everything is trial and error, that's for sure!

My daughter just started on Midodrine yesterday. It's only 2.5 mgs once a day, which I can already tell that she will probably need this more than once a day as it is so short lived. The one side effect that she is having is that it seems to be raising her heart rate. We were hoping that this drug would help the pooling in her feet and thereby keeping her heart rate down. Any thoughts on this?

I think one of the healthiest whole foods to eat are hard boiled eggs. They aren't processed, they have a lot of protein (the white is all protein) and the yolk has so many vitamins in it. My husband is hypoglycemic and a lot of the time he depends on a couple of hard boiled eggs (rolled in salt and pepper, of course) to start the day. The protein and vitamins help with brain function and you also avoid the crashes that you get with sugary things that give you temporary energy. Well, that's my two-cent's worth! Hope you feel better soon!

It's really expensive to be sick, isn't it!? I was stocking up on electrolyte water today because our local grocery store was running an exceptionally good deal. Looking for bargains is exhausting!

I order Thermotabs from Amazon. I think they might be a little cheaper, but I haven't calculated them out against the ones you get. I do know that I bought the 8 pack last time and it worked out to be cheaper than one bottle at a time. Think the bottles have 100 tabs in them.

My daughter's GYN is going to give her shot at 10 weeks instead of 12, due to the symptoms. She said she didn't want to go any earlier. So, it is nice to know that maybe by the end of this next shot, her autonomic symptoms won't be as bad. She's just trying to hang in there until next week. Thanks for all of your words of wisdom!

Hi Katybug, Thanks for the reply! Good luck on the mestinon, I hope it works for you! So, my daughter's cardiologist finally called today and we are going to try the midodrine and take several days to taper off of the Florinef. Oh, I hope this works. Her feet get so purple so quickly that I know not enough blood is pumping up to her head, heart, etc. He said he doesn't want her to not have anything, so we'll give this a try. You know, it's funny, my oldest daughter has had some rather annoying side affects from the Florinef, but my youngest is doing quite well on it. Just goes to show that everybody's different, even within families. Hoping this gives my daughter a little umph.

So, I had a couple of questions tonight, and I thought I'd ask them separately as some of you will know about one and some of you, the other question. My second question of the night is: When my daughter's depo provera shot is running out, her autonomic symptoms get considerably worse. This includes daily migraines, severe vertigo (worse than normal), worse than normal debilitating fatigue and more lightheadedness than usual. Is there a trick to handling the end of the shot? Anything you can do as it's running out to help avoid the symptoms you were trying to suppress in the first place? She's due to get it next week. Thanks everybody!

My daughter is on Florinef and has been battling yeast infections for the past 6 months. There is a warning on the literature (and other sites) that says "do not take if you have a fungal infection". So, my thought is that the Florinef is probably causing her body to not be able to fight these infections off. I believe it is also causing her headaches/migraines to be worse. I know that some of you can't take Florinef, so what do you take and does it work as well? We've tried lowering the dose in an attempt to get her off of it, but she kept almost passing out in the shower. So, obviously she needs something that works like it. I would like to get her on midodrine because she has horrible circulation problems. Her feet turn purple so quickly. I understand, though, that midodrine is usually given with the Florinef, not instead of. She is also being investigated for possible MCAS issues, too, so would say beta blockers might not be a good idea at the moment. I can't get her cardiologist to call me back, I've tried for weeks, so I thought you all would at least give me some ideas so that when he does decide to call, I'll be ready. Thanks all for your help!

My daughters saw a neuro-opthalmologist (I think that's right?) and he commented on the girl's eyes and said that sluggish movement (pupil dilation, eye movement, etc.) could be an indicator of mitochondrial disease. Doesn't mean that's what you have, just throwing it out there. Sounds like you are only sporadically symptomatic, that's great! Best wishes!

ANCY, Thank you for explaining this. It sounds like we are going to have issues if we take her off of the florinef. We think that the florinef might be causing a problem with an ongoing yeast infection and some stomach issues. In the literature, it makes it clear that you are not suppose to take florinef if you have a fungal infection (even just a simple vaginal yeast infection), and this is the only thing that we can think of that has been causing this ongoing problem. Yet, if we lower her dose, she starts passing out in the shower. We are really in a catch 22. Would love for her to try the midodrine though. My daughter has such trouble with blood pooling in her feet that I can imagine that this is part of her other problems. She can have her feet dangling for about 3 minutes and they start turning purple. You should see them after about 10! I'm also wondering if her vertigo might improve if her blood would circulate better. Thanks for the help!

I am trying to get a hold of my daughter's cardiologist to see if he will switch her from Florinef to Midodrine. We are starting to link some very unwanted issues to the Florinef. She has good results (like not passing out in the shower), but the side effects are starting to really add up. Is midodrine something that we could substitute for the florinef? We will need something that would help keep her bp up, heart rate down, and help some of the other autonomic issues.

The TMJ issues could also be the result of Ehler's Danlos Syndrome. Do you know if you have that? My daughters do and it is suspected that my husband and I both do. We are a very bendy family! I don't know about the throbbing in your neck. I know that neck issues are a big part of EDS, though. I know a lot of us here have it. I agree that it is so hard to find a good doctor. Having some frustrations at the moment with that also. Saw a good hematologist today for possible mast cell issues with my oldest. Very articulate. I liked that! Hope you find some answers soon, I know how hard this is! Gentle hugs!

I know a group of ladies from a loosely organized POTS group that I attended once, that felt that their daughter's symptoms began after the HPV vaccine. I would think that it's certainly not out of the realm of possibility. My daughters have had symptoms since they were very small, could have been the childhood vaccines, as well. In their case, though, I think puberty was their biggest contributing factor.

I noticed that these posts are several years old, but the fact still remains that people with POTS have an awful lot of trouble breathing. I wasn't sure where this fit in to the dynamic of my daughters (and myself), but I couldn't have described the feeling any better than all of your old and new posts. My daughters used to help lead the singing at church, sing in the choir and do special duets at times. Now, when they are actually able to be there, they have to sit. They can sing a little, I think, only because they have refused to quit. They sit and sing at home. Some days a lot, some days just a little. Depends on their exhaustion level. I am always telling them I can't hear them (I have very acute hearing) or understand them. They say it's because it takes too much energy to raise their voices and to enunciate. If they stand and sing, they get really lightheaded and dizzy. Think it's the combination of both. Standing in general is bad, especially those of us with EDS, with the blood pooling in the feet. But, when you add in the singing, just compounds it. Thanks for the post, Percythetrain! Btw, my oldest daughter has a lot of trouble with ear and head pressure. She is currently trying out amytriptiline and it seems to be helping some. Lately, it's been worse, but this time of year is so horribly bad for her.

So I've been thrown another curve ball. My daughter's OB/GYN from UCSF has been brainstorming with her colleagues (that was nice!) and they think that there is a possibility that it might be vaginal dryness due to the Depo Provera shot she has been getting. At first I didn't buy it, but the more I've been looking into it and the more she explains, it is a distinct possibility. The shot does not have estrogen in it and when you are stiffling the body's natural estrogen making process, you've got vaginal dryness. And...because none of our bodies work right and usually overreact at just about everything (my daughter's does, anyway), this might be a possibility. Only a couple of the cultures ever came back positive and everything else (yeast and UTI) was negative. We are still waiting for the mast cell testing to come back. She has very sensitive skin anyway, so the fact that it is so irritated and inflammed would account for the low grade fever also. We are going to try using some coconut oil (solidified) as a vaginal suppository and see if it helps. It was one of the doctor's recommendations and I have a big tub of it in the fridge!! Our bodies are always so extremely complex. Nothing is ever simple. It's been such a rough year so far. She'll be 20 in a couple of weeks and is so hoping for a better decade! Thank you all for all of your help!

My daughters have EDS Type III also and have a difficult time exercising. I know they say that exercise will help, but it's really hard when your knees, elbows, shoulders, ankles, etc. keep sliding out of place. Their chiropractor has given them some very mild exercises to strengthen their core, knowing firsthand what the different types of exercise can do to them. It's extremely frustrating for them. I hope you can find something that you can do to keep you active without making things worse!