DizzyGirls

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About DizzyGirls

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  1. DizzyGirls

    New to DINET

    Welcome to Dinet! Don't forget the salt! Try to get it in your food, things like pancit or probably adobo would be high salt. Drinking that much water is good, but there is such a thing as too much of a good thing. Can you make sure some of that is electrolyte water? Would keep your electrolytes balanced.
  2. 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!
  3. DizzyGirls

    Best Place to Live with POTS &EDS

    I'm a little partial to CA.šŸ˜Š
  4. DizzyGirls

    Trouble with bleeding?

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

    Balance issues

    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!
  6. 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.
  7. DizzyGirls

    Trouble with bleeding?

    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!
  8. DizzyGirls

    Parasympathetic dysfunction

    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.
  9. DizzyGirls

    Parasympathetic dysfunction

    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.
  10. 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!
  11. DizzyGirls

    Is this a lifetime illness?

    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!
  12. DizzyGirls

    Does my teen have POTS?

    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!!!
  13. DizzyGirls

    Weird Eye Artifacts/floaters/after Images

    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.
  14. DizzyGirls

    Does my teen have POTS?

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