DizzyGirls

My daughters were diagnosed by Dr. Jaradeh (neurologist) at Stanford University's Autonomic Clinic. It didn't take him long to figure it out. My oldest daughter's joints are like one of those marionette dolls that when you set them down they sprawl everywhere. He picked up her leg and said to his PA 'come here, you've got to see this'. So by the end of our very long day there, he said, without hesitation, that both of my daughters have Ehler's Danlos-Hypermobility Type. They have some of the worst dysautonomia that their doctors have seen (2 neuros, cardio, PCP, chiro). My youngest has more of the skin elasticity, and not as severe of hypermobility. Both have GI, oldest has severe headaches and migraines, and both have POTS. You don't have to have all of the symptoms to be diagnosed. Everybody is different. Hope this helps! By the way, most people will recommend going to a geneticist for a diagnosis in the U.S. (rheumatologist in the UK), but when we went to one, he wasn't very interested in making a "definite" diagnosis on it.

My daughter has been running a low grade fever, no higher than 99.4, for the last couple of months. She had a yeast infection that we were having a terrible time getting under control because Urgent Care said, 'oh probably UTI, too. We'll treat for that and yeast.' Back and forth it went for 3 months because nobody treats a UTI or yeast infection for any length of time to kill any bacteria. My daughter's normal temp is 97.6 and so a 99.4 temperature feels like a fever to her. Chills, sweats, etc. The UTI is gone, yeast is going. Temp was normal for a few days (late last week), and then the last couple of days it is climbing again. Does anyone have a constant low grade fever when things like this are going on? Everything was finally under control, we thought, and then the fever starts rising again. I will add that her autonomic state is really bad right now. She has almost passed out every time she's taken a shower over the last week, with the exception of today. She has Ehler's Danlos Type III, and I believe she has (at the very least) very active mast cells. Anything ring a bell with anyone? Thanks for your help!!

My daughters are probably among the most severe, but you seem to have a milder case of the same problem. They always got car sick when they were little, but now that their symptoms are in full swing, the same thing happens to them as is happening to you. They can't use a camera for too long (although they have improved some with that). They can't watch tv at all. They turn around on the couch and "listen" to tv shows, so that means that anything with too much action and little dialogue is out of the question. All they hear are guns firing, sort of boring! Same thing happens with visual things, such as their neuro's new office...windows everywhere! One might say, 'look at the view'. They take one look and begin to spin and get lightheaded. It goes on, but you get the picture. I believe it's caused by a central nervous system problem and their vestibulo-ocular reflex. Their neuro is pretty sure this all has to do with their autonomic instability. Best wishes to you and you might want to take some meclizine before it gets any worse!

My daughters were just diagnosed with POTS and a whole slew of other things, but the one thing that we were told to do by several different doctors is keep hydrated and eat lots of salt. Most of the non-POTSy world would cringe at the amount of salt we have to eat to feel better. It's not a cure, but it's a help. My daughter is drinking two liters of electrolyte water daily in addition to everything else she drinks. We have found that caffeine is a great help. BUT, I would caution you to test the waters on this first. It's not for everyone. Makes some people a lot worse. They also are on Florinef. Everyone is different, so you have to find what helps you and how much. BTW, my 17-year-old is a budding artist! It's been a source of great enjoyment and therapy for her while she is unable to do much of anything else (mostly pencil and charcoal, but testing the waters with acrylics). My other daughter is 40,000 words into her first book. She narrates it to me to type because using a computer makes her dizzy. Both of my daughters suffer from severe vertigo that they now think is caused by their malfunctioning autonomic system. Hope you continue to get the help you need! Be well.

We had good luck with a neurologist from Stanford (Autonomic Clinic) who didn't even hesitate to diagnose both of my girls.

I know that for my daughters, the holidays (Thanksgiving through New Year's) are a very tough time. The holidays are something that most people enjoy, and they do enjoy them (they love Christmas!), but for the extra excitement and commotion, there is a price. All autonomic symptoms (includes debilitating fatigue, vertigo, tachycardia, etc.) are off the charts and they will be trying to recover for months. Hang in there, hope you feel better soon!

Thank you all for your responses! I'm feeling better about all of this! When her vision starts blurring and her arm starts going numb and her head feels like it's going to explode, I know this is too high!. Her heart rate is really random in that it is high just sitting doing nothing, even when she just wakes up in the morning! But, she's been taking her bp and hr a lot and it just fluctuates. Not really any rhyme or reason. We do have an appt with a cardiologist this next week, so here's hoping that she can make it to the appointment and that he can help! I'll let you know what he says. Still makes me mad that not one doctor has bothered to call back this week. Glad to have all of you!

So, my daughter is still tachy and no doctor is calling me back. I've put several calls in to her neuro and I talked to one nurse, but she said that I ought to talk to the one that was there at our appointment. They are superb while you are there, but as soon as you leave, I guess they assume someone close to home will manage your symptoms. I wouldn't have traveled that far if there was someone close to home! My daughter's PCP won't touch it with a ten foot pole! She's still having trouble with a kidney/bladder/maybe kidney stone issue and it's making her Dysautonomia really bad. My question is this: Is there a number that your heart rate should absolutely not go beyond before you need to be concerned enough to go to the ER. (Daughter's is between 100-119 at different times of day). I know that's a question for my doctor and when and if he decides to call me back, I'll ask him. For now, though, is there a number any of you have been given by your doctor? My daughter is little, about 5'4" and about 115 pounds, if that matters. We do have an appointment next week at the new autonomic clinic at UCSF, so I'm hoping she can hold out for that. One of the doctors we are seeing is a cardiologist. Thanks for your help!

Thanks for your input! My daughter was on propanolol for a bit several years ago. A neuro put her on it for migraines. Thought it might help her vertigo, too. She couldn't take it. Too constipating and it made her so slow and lifeless. She's on a lot of meds now, but they didn't do what propanolol does to her. That's why I was worried about the pindolol, it was in the same class of drugs. I still haven't heard from our doc.. They are great while you are there, but as soon as you walk out the door.....

I was thinking that they wanted them to stay on the Florinef. I am thinking that I will start this med (whenever they decide to call it in!) after we go to UCSF. It's only about two more weeks and I want to see what they have to say before starting something new....just in case. Yes, it does seem that Florinef is like a base drug, and they build on top of that. My biggest concern is taking something that will make them feel worse, not better. I'll find out what our neuro and new cardio doc says when we go and then decide. I don't expect a miracle, but our neuro at UCSF is kind of an ou-of-the-box thinker and in these types of situations, that's good. Happy New Year everybody!!

Definitely! My girls are the same way, 97.6 is normal. So, a fever of 99.2 (what my daughter has been running with a UTI) makes her feel really bad. POTS symptoms are haywire, etc. Wished the general medical community agreed with us, I'm getting really tired of trying to convince them. Happy New Year!!

SarahA! Thank you for correcting my title! You don't know how long I fiddled with it to fix it. I then figured out that it must have to be done by an admin, so thank you! Happy New Year!!! Will let everybody know how the new autonomic clinic at UCSF fairs. Think they have different ways of doing things than Stanford. I do know that the cardiologist in the group does not like tilt table tests, so we'll see what he uses to diagnose POTS and to help all the other aspects of Dysautonomia.

Katybug, I'm really not sure why they tried verapamil first. I'm having a bit of a problem with communication with the people at Stanford. I found that our neuro at UCSF was far more efficient in writing back (his nurse) than trying to get somebody from Stanford to write back. Then, when they do write back I feel there is never any explanation for anything. I find it very frustrating as I do depend on communication and explanations for things. I don't just like giving my girls meds willy nilly. I do have a tendency to question everything, but when you've been dealing with conditions like all of ours for as long as we all have been dealing with them, life depends on it. I don't like to assume anything. So.....my daughter was at her PCP yesterday for what he now thinks are kidney stones. So I was asking him about the Pindolol, and he liked it much better than the verapamil (which did nothing except make her even more tachy) and definitely more than the Florinef. He doesn't like that one for some reason. So I was thinking that I need to write the PA back from Stanford and tell her that I would like to try the Pindolol for the girls. I think I'll try it in very small doses first to see how they do. It would be worth a try, I think. MomtoGiuliana, Thank you for responding. I'm so glad to know that you are taking it and are still alive! I think I would try them on a small dose, just like you are doing, as my girls tend to be hypersensitive to meds. They do tend to have the low bp, though, which was my concern, but a 1/4 dose might be enough to control the hr without messing with the bp too much.

I just received a message from our PA down at Stanford, and, because the verapamil wasn't working for the girls, they are wanting to try Pindolol. Has anyone ever heard of it and have you taken it? I did a very quick run-through of it last night and the side effects are the very thing we are trying to correct. Now, I do know that we are all "strange" in regard to medicines. It's like you almost have to disregard the "listed" side effects, because on us they work differently. This could be one of those cases. It is a beta blocker. My daughters have severe vertigo (thought to be autonomic in origin), POTS, debilitating fatigue, severe migraines, and low blood pressure. I did ask the PA regarding low blood pressure. My youngest daughter's blood pressure has been higher, I think due to her Florinef. It's a good thing. Too low and they feel worse than they already do. In addition, they do have an appointment at UCSF's new Autonomic Clinic in a couple of weeks. I guess it is moving very slowly. We were hoping to get in last year, but this will do. As soon as Christmas Day was over, it was back to doctoring. Never rest for the weary! Thank you all for any help you can provide in this! I'm editing this as I misspelled the drug. It's Pindolol not prodolol.

Try to have a calm and Merry Christmas....enjoy the 26th!

PupLoverKV, They cultured the first sample, but their standard is only for two days. It was at the urgent care clinic, not her regular PCP. He was really mad that they didn't do it for 7-10 days. He said two days wouldn't show them anything. I agree. That's how this cycle got started. Should have just pushed the PCP to see her in the first place. She's doing a bit better, but all her POTS symptoms are skyrocketing because of Christmas. Talked to her PCP yesterday and he said "don't worry, I'm not leaving town. Just text me if you need me." Gotta love him!

That's so funny! My exhausted mind and body thank you for bringing a smile to my face ! Merry Christmas to all in Potsville!

My daughter asked me how we were ever going to get through Christmas because stress, excitement, exhaustion all make her POTS symptoms go haywire...I just reminded her....moment by moment.

This is encouraging! My daughter just had her first shot of Depo. We were a little nervous to start it because she had bad side effects from the two other estrogen containing bc pills. Her Dysautonomia gets so bad the week before, during and after her period. We had to do something. Right now she is fighting the most stubborn of yeast infections in addition to an equally stubborn UTI. She is on her third antibiotic. They will treat her for three days, then in two days the UTI comes back, switched antibiotics, treated her for another three days, FF two more days and the UTI came back again. She is on 5 more days of the Cipro, thinking about asking for a few more days as the UTI now seems to have moved to her kidneys. I know we are not really discussing this in this thread, but, since this is more of a 'ladies' issue, has anyone else had this problem?

Thanks for all of your responses! Dysautonomia - it is a finicky thing! I have a wonderful chiropractor who is not like most chiropractors. She has this ability to retain much of what she learned in college, umpteen years ago, and she studies all the time. She's also certified in sports medicine, so she's great with the joints and stuff from their Ehler's Danlos issues. Anyway, asking her about this, she mentioned possibly her brain was producing too much cortisol in these instances. You know, like in hyperPOTS where there's too much adrenalin (my oldest daughter), the same can happen with the cortisol. It would make you very sleepy. Sounded logical to me going on what I've researched. Most people, I guess, don't need to know the "why" of everything. That's not me. I need a full scale explanation of why everything is happening. It helps me put the pieces together. I'm glad she's not the only one, and it is interesting to see how you and your spouses react within the same household.

My youngest daughter asked me today if extreme fatigue was an autonomic response to anticipating the excitement of the Christmas season. My oldest daughter can't get excited about things because her POTS symptoms just go haywire. Her hr was up to 105 today just sitting on the couch. My youngest daughter is thinking that her response to the anticipation of the holidays is extreme fatigue. Neither one has many responsibilities as they aren't up to doing much. We are trying to save all of their energy to do a couple of things, that, for them, is the most important events to spend their energy on. Does anyone else experience extreme fatigue in lieu of an adrenalin response? She was just wondering.

After dealing with all that Dysautonomia has to throw at us, we have learned to eat what digests well. What goes down well for one person often doesn't for another. I try to make sure everyone gets some protein, either from a meat source, finding it hidden in other things, or, say, boiled eggs. It has really been impressed on my mind how important protein and nutrients are (long story for another time). We try to make sure we have veggies, and, yes, we are pasta lovers too! Carbs do not seem to bother any of us in the family and don't really eat gluten free because we aren't affected by it. My husband has to eat a high protein, high fat diet. His blood sugar does not do well otherwise. My mom has a friend like that too. My husband can't think well if he doesn't stick to this. It's not for everyone. We eat in moderation and love sweets. But, everything in moderation often works for us.

Ahh, hours in front of the Iron Man series! We love it too! Something my two POTSie daughters enjoy! My two daughters (19 and 17) have not only POTS, but Dysautonomia (where it affects the entire autonomic nervous system) as well as EDS III (my husband and I both are probabilities also). It's rough. My daughter's primary symptom is vertigo. It's been a month today since we were at Stanford University, saw the autonomic doctor, got the EDS and POTS diagnoses and had the TTT and some valsalva testing. It's been a rough year, over 100 doctor's appointments. We know how you feel. My daughters don't drive due to the vertigo and the meds they take. I'm the primary caregiver and I've been showing more signs as of late, my husband brings home the paycheck and is our resident chaeuffer to places I don't feel comfortable driving. This group has really given me hope that eventually we will stumble on to the right meds and get this under control. There are so many knowledgeable people here. Sort of like a big brainstorming group of people that all have similar things that no doctor has ever heard of, so we have to educate them so that we can get some help. My girls are on Florinef and Verapamil to try to help the Dysautonomia, but so far it's not doing much. They are on other meds too, to help control vertigo. Hang in there!

Hi Jade! I didn't see this post until after I had posted to your original one! Oh well. Check the original from the other day. Take care!

My daughter's vision gets blurry when she has a migraine and when her POTS symptoms are really bad. Always best to get things like this checked out. My daughter saw a neuro-opthalmologist earlier this year at UCSF. Said her eyes were ok.