DizzyGirls

Hi there! Welcome to DINET! We live in the SF Bay Area and go to Stanford's Autonomic Clinic. We saw Dr. Jaradeh there. He's fantastic for diagnosing as he's willing to actually make a diagnosis, follow up is a little challenging, can be done, though. BUT, it's really, really important to have the diagnosis, especially from a place like Stanford. So, that being said, yes, you do have to have a fantastic referral and the wait is long. We have had doctors look at us and say 'you have Ehlers Danlos? It's really rare, and POTS, too? Who diagnosed you?" Then I can say "Stanford" (and you say it with a little, "how dare you question their diagnosis!"). My suggestion would be to find a cardiologist that would be willing to assess your symptoms and do as much as they could locally, then, send you that referral to the Autonomic Clinic. A neurologist, too, would work. Are you anywhere near Fairfield? If so, there is a great neurologist named Dr. Ameer Almullahassani. He is so nice, but good, too. He sent a referral for my daughter to get in to her neurosurgeon at LPCH. Normally I hear it takes months to get in to him, but she got in in two weeks! I don't know what was on that referral, but it must have been good! You can PM me if you want more information or suggestions! Until you can get someone to listen, make sure you stay well hydrated and lots of salt. Hang in there!

I'm a little partial to CA.😊

Yeah!!!! So glad you are going home!! I'll talk to you tomorrow! Enjoy your own bed!

As you can see by my username, dizziness/vertigo is a huge problem. My daughters both developed vertigo when they were 12-1/2 and 13. They are 22 and almost 20 now and still have it 24/7, 365 days of the year. They've done the Epley maneuver, had some inner ear evals (but no videonystagmography or rotational chair, just barbaric!). My daughter's PT commented the other day about it and said he would have a hunch it's autonomic because it never stops. Off balance is a problem, dropping things, walking into walls. My oldest daughter is like a pole magnet! We'll be out somewhere (most likely a doctor's appt) and if there is a pole somewhere, her body heads right to it. I have to grab her arm to pull her around it! It's crazy! Kim- The girls' autonomic PA has commented a few times regarding their dilated pupils. She said that's an indicator that dysautonomia is still happening. My youngest didn't need her eyes dilated at her eye appointment because they were so big already, he could see right in! The field sobriety test! Yes, my oldest daughter would fail that in a heartbeat, my youngest (even with her newly developed dystonia (as long as she's taken her meds)) could totally walk a straight line. When the girls' POTS is worse, tachycardia, they have vertigo and lightheadedness. Make sure you eat plenty of salt. We actually figured out the girls had POTS due to the fact the youngest one was eating ramen noodles by the case. She had horrible gastroparesis and that was all she could eat. Her vertigo and dizziness, two different things, was improving! So, hang in there, eat your salt, take your vertigo meds when you need them!

Somebody can correct me if I'm wrong, but I thought there was a Dr. Jaeger at the Cleveland Clinic. I know I've seen his name a few times and thought that was where he was from. I'm thinking he's a cardiologist. Might check him out. Look for a cardiologist or neurologist (good luck with those). We know about rheumatologists, too. My daughter saw one, too. The first visit she dismissed all her complaints and drilled her about anything that did make it through. The doctor couldn't figure out why my daughter didn't exactly know how long she slept at night. Well, are you counting the times she gets up and has to go to the bathroom again, or the time she needs medicine for her stomach, or.... you get the picture. We actually had to go back about a year later. I didn't want to see her again, but our PCP was insisting that she was a good doctor, give her another try. We sat down and the first thing she says "I thought we weren't a good fit." The receptionist had asked why I had cancelled her previous follow up appointment, so that's what I said. She told the doctor! Moral of the story.....stay clear of rheumatologists. My mom has a good one, so they are out there, just few and far between.

You're right! Never just one problem! Yep, my mom's doctor told her one of the times that she bled, that she most likely had been bleeding a lot longer than she knew. I hope you are feeling better. Hang in there, I'll keep praying!

Thanks! That med has been mentioned a couple of times to my daughter, why no one has ever tried it is beyond me! I'll look into that.

I've been on a bit of a personal mission to learn more about the parasympathetic role and so this interests me. My daughters do have very dilated pupils, in fact, optometrist didn't even have to dilate my youngest daughter's eyes because they were so big! They also have dry eyes and my oldest is having a hard time with low grade fevers, as well. The straw that broke the camels back, per se, was watching my oldest daughter trying to recover from surgery last summer ( a big one, 9 vertebrae spinal fusion w/ instrumentation) and she has developed this pain that comes primarily at rest and at night. So when her sympathetic settles down, her parasympathetic does not take over fast enough or effectively enough to allow her to fall asleep without this horrendous pain surge. The pain surge then leads to dystonia, her body just tremoring and arms and limbs flailing, head turning, thrusting her back and forth against her pillow. It's horrible. I looked up Autonomic Mediated Pain and there were several articles, CRPS popping up a lot. I'm very interested to see what you find out about this and how to fix it.

Great letter Pistol! WinterSown - Our old beloved family doctor always used to say, "someone had to graduate at the bottom of the class!" We have dumped those!

My daughters have vertigo 24/7 that arrived promptly when they started to go through puberty. Both take meclizine (antivert) and one takes diazepam and the other lorazepam to keep it under control. Is this ideal? No, but it works. We feel that it is autonomically driven, pretty much for the fact that everything else has been checked and we know that it doesn't have anything to do with their ears. They both had to go on either the depo provera shot or low estrogen bc pills due to their symptoms during their cycle. Just because you feel sick from the dizziness does not mean you have MS (not saying you do or don't), having vertigo can make you very, very ill. Is your dysautonomia or POTS being treated at all right now? My youngest always made sure she ate a lot of salt, which, ironically enough, was how we discovered her POTS in the first place. She was salt loading (ramen noodles, etc.) and her vertigo was settling down some (after a major attack). Started researching and found this thing called POTS. Five years later, still here. She is able to get up and about now, can't read much at all, the lines of text make her dizzy as well as watching TV, riding in a car, elevator.... there's a long list. They suffer from sensory overload extremely easily, as well. You can do this. You have to take each day as it comes, it's too overwhelming if you are looking at your life as a whole. My daughters have been chronically ill all of their lives, their lives weren't supposed to be like that either. But, you have to do what you can do, make sure you see doctors that are knowledgeable in all things autonomic. Research. Don't expect them to always know. Come armed with all the latest medical research that the computer will give you. That is a must. Dysautonomia can wax and wane to a degree, but usually always has to be treated to some extent. MRIs - ask them to put you under anesthesia. That's how my daughters have to do theirs. My oldest actually loves the anesthesia because it settles everything down and she gets a bit of a respite for a few days after. Propofol has been extremely helpful. You CAN do this... sending warm hugs!

Aww, thanks Kim! Pistol - I know that feeling of trying to save our kids from pain and worry. I've watched my daughters go through things that no one should ever have to go through. I've been compared to a mama grizzly bear, a pit bull, and have told by a doctor that I am "so frustrating"! But on this day, I had to smile. My oldest was having surgery to fix her collapsed neck (fused C3-T4) on her sister's birthday, and her sister was there waiting for 8 hours. My youngest had also developed dopa responsive dystonia (didn't know what it was then) a few months before this and had to take a rollator walker so that she could be there. So, my youngest decided that while she was waiting for her sister to come out of surgery, she would be an advocate for all things "invisible". She had "Dysautonomia Awareness" signs, and Ehlers Danlos signs all over her walker. Big enough for people to read. So, her motto is "go bold or go home!" People tend to stare at a teenager with a walker, and that's what she was counting on. There are a lot of things that we can't control, but we can help them to use these hard things in their lives to make them stronger and to encourage others...to pay it forward. So, hang in there, we are all here to help you get through this!!!

Haven't completely read all the responses, but "ocular migraine" fits. Probably why beta blocker worked. They are migraines without the headaches, just the aura. Think a couple of people inferred that.

I think you are being observant, not overreacting. It sounds very much like POTS. Sometimes injuries or a trauma can really zing it into action. I would take her to your autonomic specialist as soon as humanly possible. The wait for those appointments is often long. It's always best to treat any medical issue sooner rather than later. So much harder to calm things down once they've reached "severe" status.

If the scopolamine was helping, you might try meclizine as an alternative. I get mine on E-bay, so much cheaper.

Does melatonin or Benadryl have any affect on you? Just curious. I have one daughter who relies on melatonin to calm her sympathetic nervous system down at night and it also helps her pain from a multiple spinal fusion she had last summer. We were really surprised that it had helped with the pain, as we are having a very hard time keeping it controlled. Hope all the people here are able to help get you better!

We went to Stanford's Autonomic Clinic. Don't know if it's the best because it's the only place out west that has an autonomic clinic. Maybe Seattle has one, but we don't live near there. We saw Dr. Jaradeh, he's the head of the clinic, for diagnosis. We used his PA Irina for follow-up, less wait time for her than Dr. Jaradeh.

There are things in the neuro world that only attack one hemisphere of the brain. Doesn't always have to involve both sides. Have you had an EEG done by a competent tech. A dysautonomia savvy doctor would help in interpreting, as well.

I agree with bombsh3ll, a very helpful med for my daughtes and unfairly stigmatized. Made a big difference for them.

Sounds all too familiar!! Welcome to DINET! I'm a caregiver to my daughters who have it, in addition to Ehlers Danlos Syndrome. I remember when we finally put together that all of their symptoms were part of ONE thing. You feel like you are finally there! Now we usually look within the confines of EDS. It has saved a lot of time!

What about a different variety of bc pill. I know that some contain more of one hormone than the other and maybe a variation would help alleviate that. My daughters are so much better on bc, too! What a world of difference! One gets the depo provera shot because she gets bad migraines and can't have the estrogen, the other one takes Microgestin. Every month was just miserable before. I hope you find something that helps and doesn't upset your tummy!

I have a friend who is about 65 and she had a terrible time in her teens with passing out. She would be in class, at a restaurant, you name it, no place was safe. As she's gotten older she doesn't have that problem. She has been diagnosed with fibromyalgia, and has survived breast cancer. I would bet a lot of money that she has EDS as well, although she's never been diagnosed. Her daughter has a lot of GI issues and would highly suspect EDS in her, a sister has fibromyalgia and POTS, as well as a niece who has POTS (would suspect EDS in her also). That being said, she didn't do anything in particular to make it go away it just went away. I don't think, however, that you "outgrow" it. Like someone earlier said, maybe it just goes into remission. As for my daughters, their POTS is being controlled, but I don't think they will ever "outgrow" it. Doctors who say that usually don't have that much experience with POTS, they are just going by what they've read in textbooks or articles. We are all far from textbooks!

Yes!!!! Was a lifesaver for my 19 year old daughter. She put her on low estrogen type and runs it continuous, no breaks to have a period.

I find that the more I know about Dysautonomia, the more I realize how little I know! It affects so many different things that it blows your mind! I'm curious, have you ever tried putting a rice sock (or the like) on the back of your neck or for the leg spasms, your lower back? Just wondering if it would help control them. My daughter is suffering from massive muscle spasms on her upper back and neck from cervical fusion about 8 months ago. When she is at rest and the sympathetic settles down, her pain kicks in, as do the tremors. The larger the muscle contractures, the bigger the tremors. The last few nights have been off the charts. One of the helpful things we do, though, is warm a bunch of rice socks in the microwave (not too hot, though) and put them on the back of her neck. Sometimes it takes a second to find the right spot, but it will stop the tremors. Putting one on her low back helps the feet spasms. If it works, you might look into craniocervical instability. Could just be POTS, too.

My daughters have this problem severely. They can't watch TV at all, use a computer, or go to a movie theater. They can use their phones, as the screen is small enough. My oldest, though, has trouble with her phone if she's in the middle of a surge of migraines. The girls don't "watch" TV, they turn around with their backs to it and reflect the image of the TV on their phones. The small pixels of a phone are less bothersome, but mostly they just listen. Movement of scenes on a TV as well as movies at the theater, and just looking at a computer for too long makes their vertigo really bad.

My two daughters are part of their research study on CFS and have been for the past couple of years. Dr. Koglenik, who is heading up the study, actually made a house-call for their exam because my girls couldn't make it to Mountain View. He is top-notch, brilliant, but humble man. Don't know what they've found out, but I sure liked him.