DizzyGirls

When my daughter is especially tachycardic, her vision gets real blurry. She doesn't experience any sudden vision loss, though. Do you have any other symptoms that go along with the sudden vision loss? Say, maybe, severe headaches or a feeling of pressure in the head? Just curious.

Hi halffull! I live in Northern CA, too, and several of our doctors are at Stanford. I wouldn't recommend them all, but have you tried Dr. Jaradeh or his PA Irina Krugamova? He takes absolutely forever to get into, but she is very good and her wait list is a lot shorter. They are at the Autonomic Disorders Clinic in the Neuroscience building. I know of someone who also sees Dr. Muppidi at the Clinic, too. She got him through paperwork error, but she likes him. I find that other than the two of them, I don't know anyone. One would think that living in an area with so many "world class" medical centers that it would be easier to find a plethora of doctors who understand POTS. Do you have Ehlers Danlos also? Just recently my daughter was in the hospital at Stanford, had 9 vetebrae fused (cervical instability due to EDS). We met the nicest doctor ever. She is a hospitalist in the neurosurgery section and in one of our conversations she was commenting on how little they teach in medical school about things like EDS and Dysautonomia. She soaked up everything that we had to share with her. For neurosurgeons who understand EDS I would recommend Dr. Gerald Grant (ped neurosurgeon, Lucille Packard). He makes exceptions for adults with complicated cases like my daughter's. He's also a Chiari expert. The other neurosurgeon is Dr. John Ratliff from the adult spine clinic. Probably doesn't quite understand all of the idiosyncracies that Dr. Grant does, but he is top notch in spine reconstruction and understands the healing and mechanical part of EDS that affects the body in relation to surgery. I, however, DO NOT recommend their PT people. That is a long story for another time. Sorry I couldn't be of more help.

Black Olives!!! 115mg in four olives. And who only eats 4???

Hi Vepa! Welcome to the forum! You said you are not a doctor and you are trying to find a knowledgeable one to help you. I, too, have said those words early on. I'm still not a doctor, but I sure as heck know a lot more than most doctors put together. There is so much information on the internet and you have already begun your diagnosis because you are consistently getting the same results when you do the "poor man's tilt table test". So, you do know what you are doing. Our cardiologist at UCSF didn't like the tilt table tests. He said they were barbaric and that you can get a good analysis of a person by doing just as you have done. Write these records down, put a date with them, keep them somewhere safe. I know we can't prescribe our own meds, so for that you will need a doctor, but many of us have diagnosed ourselves and searched for the doctor after. That's how we handled my daughter's cervical instability. Nobody and I mean NOBODY knew what was going on. It wasn't until I started looking into Chiari and then my dad found information on cervical instability, that we then searched for a doctor who knew about Ehlers Danlos, POTS, and cervical instability. She's now 5 weeks post op! Whatever you do, don't sell yourself short! You found this forum, didn't you!?

Hi dizzyape! I have family that lives in Nashville, too! Wow, a trip to Vegas! Sounds like an adventure! I would definitely make sure that you drink a lot. Do you like SmartWater? My daughter drinks 2 liters of that a day and about another liter and some of just plain water, tea, vitaminwater, etc. Also, salt, salt, salt, salt! Did I mention salt!? (Thermotabs salt tablets). I would work up to the water, though. Drinking that quantity from the get-go will most likely make your kidneys mad. Compression socks, stockings, sleeves, however you can tolerate them. Find spots to put your feet up or all the blood will sink to your feet and you'll start passing out. If you have vertigo, I would bring some meclizine (OTC at Costco) with you. Don't forget your meds when you go on your trip. Good luck!

Hi there!! Welcome to the forum! I, too, have a 21-year-old, no twins, but another daughter 19. They became symptomatic about the same age you and your sister did. Their primary cause of their POTS is Ehlers Danlos, but my mom has Ehlers Danlos and Mixed Connective Tissue Disorder with an overlap of lupus. So they could possibly have an underlying autoimmune disease, too (highly suspect it in my oldest). You could definitely have POTS symptoms from lupus. It affects your whole body, so anything that has that effect on the body could potentially cause autonomic dysfunction. Your description sounds all too familiar. My daughters are at the point now, though, of not being able to live completely normal lives. They are, however, greatly impacting the medical community where we live and are spreading awareness as fast as they can about Dysautonomia and Ehlers Danlos (which we believe to be the cause of their POTS). My oldest is currently recovering from multiple spinal fusion surgery (9 vertebrae, to be exact!). While at Stanford she was the first one asked to share her story in this new "storytellers" program that they are implementing there. Her story has the potential of making it to the library of Congress! She was so excited (especially since she is a writer!). My youngest is an artist, but is just concentrating on walking at the moment. Her legs just buckle out from underneath her and she falls around 20-30 times a day. It's exhausting. Her hips look very unstable. We have an appointment for her with the same neurosurgeon that did my other daughter's surgery, so that's good. I hope this helps and if you have any more questions, ask away!!

Thanks dancer! Hi p8d! You know, she's had a lot of testing done for autoimmune disease, but, other than a lower titer positive ANA, she tests negative for everything. That being said, I still hold that she probably has Lupus or Sjogren's. She has a lot of the symptoms, just nothing ever tests positive in her blood work (with the exception of the low ANA). My mom has lupus, also. Would think with both of them having Ehlers Danlos and my mom having Lupus, too, that maybe my daughter would have a predisposition to it. Thanks for your suggestion!

I had a quick question for everybody.... My daughter is 3 weeks post-op cervical/thoracic spinal fusion (C3-T4) and her temperature keeps registering 99.4, 99.8. She had a UTI, but that seems to be under control (had that rechecked today). She keeps getting these low grade fevers, though, and the doctors don't consider them a fever until they reach about 101.5 or something like that. Has anyone else had this problem this long after surgery? I'm worried about infection as her back is now full of all sorts of titanium and we don't want anything to jeopardize the healing of her surgery. She's real tired today, don't know if that is contributing to it or not. Any ideas???

Hi Bluebonnet08, just because one doctor said you didn't have EDS doesn't mean they were right. My daughter was told she had Benign Joint Hypermobility Syndrome when she was 5. Years later at 19, she was diagnosed with EDS. She's 21 now and in rehab for cervical fusion of C3 to T4. Rods, screws, hers and cadaver bone, anterior and posterior. She had EDS all along. If you think you have EDS, you probably do. See an EDS savvy neurosurgeon, sounds like you have cranio or just cervical instability. Good luck to you!

My daughters see an autonomic specialist at Stanford, he's a neurologist, and he readily diagnosed them. They saw a geneticist once and was saying "maybe, they might have Ehlers Danlos" but would never commit. The neurologist right away could tell. No hesitation.

I DMd you! We are here at acute therapy. My daughter is sleeping, so exhausted from the trip. It's small and quiet, so far. We'll see what they try to do with her tomorrow. There's talk of kicking the parents out after a couple of days. Don't like that. I'm all for her being independent, but her condition is one where there isn't always the ability to become totally independent. Besides, she's never been away from home before and she's just had major surgery. Always makes me nervous when they don't want the parents around.

Hi Kim! Thanks for the laugh and I'm so glad that receptionist now knows what a physiatrist is!!!! Still laughing! We have one set of neurosurgeons on our side. Hopefully we'll see them in the morning. I told her that I wondered what they were writing about me. She assured me not to worry about that. That was nice. Just want my daughter to be able to stand again, balance her back, and go home.

They are pushing really hard for her to go to acute rehab. It's intense therapy, 3 hours a day. I'm really unsure as I think the commotion alone would kill her. If we get one more cheerleader therapist I'm going to take her pom poms and well.... think I need some sleep! Our othet dilemma is how to get her home without passing out. There is no such thing as "normal"! You are right! One of the neurosurgeons said there is not one thing normal about her. I call her my zebra unicorn. Ever seen one???

Hi Kim! Well, right now she's regretting it, but I don't think that's a fair assessment. No halo and her pain is better 5 days post op than she was before. It's just her dysautonomia that is all whacked out. Tachy then brady, can't eat, sweating, nausea. You name it.

Hi all! Just an update on my daughter's surgery. It was this past Monday. The surgery was about 8 hours long. It went well! We had two very happy neurosurgeons! They fused C3 to T4, anterior and posterior. The problem is the recovery. She's having a lot of pain. That's to be expected. They've also started PT which has proven to be a challenge more like a disaster! They were working with her yesterday and she passed out. About 15 people in her room trying to revive her! Scary stuff!!!! Today she was in a warm and cold sweet. After about 6 hours of this, she passed out. Anybody have anything like that after surgery????

Hi Kim! Saw your post and although I've not gone to one, I have actually heard of them! My oldest, the one who is going in for surgery on Monday, was suggested by her pain doctor that she might benefit from a physiatrist. The only ones I found were at Stanford Medical Center. I know you are clear across the country, but the unicorns seem to be located at the major universities. I would imagine, unless a unicorn got out, that you wouldn't be able to find one outside of that parameter. Reading the post above, they sound like they could be very beneficial. My daughter's condition was too advanced for one, but maybe you might be able to keep your condition from getting to that point. Good luck to you!!

Kirsty, I am so sorry that you are experiencing all of these horrible symptoms! How difficult this must be after having a baby. You are right, though, in that POTS is usually as a result of something else. Is there a possibility of autoimmune - any testing done to rule this out? My daughters have Ehlers Danlos Syndrome as the primary cause of most everything that is wrong with them, including POTS. Any possibility of that?? Unfortunately, it takes time to unearth all of the possibilities, endless referrals, wait times for appointments, etc. While you are waiting, research. Make a list of your symptoms, when the baby is napping, start Googling!! That's how I came across the diagnosis for my girls. I diagnosed them, found a doctor who specialized in EDS, somehow managed a referral to said doctor and that's how they've gotten where they are today. It wasn't because any doctor diagnosed them, I found it. So, take control of your situation and ask as many questions as you can possibly think of, we will do the best to share anything that can relate to it, and keep Googling! Read, read, read. Don't wait for a doctor to say "hey, I think you have this or that." It may never happen. Only you know your body. I wish you all the best and I hope the depression lifts soon. That's got to be the hardest symptom. Gentle hugs!!!

Like Kim said, pernicious anemia and gastroparesis. Watch what you eat. Not only small meals, but also the fat intake. Meat is harder to digest than a lot of things. Eggs are easy, as well as greek yogurt and milk. Liquid always digests better than solids. My youngest has had a couple of bouts with feeding tubes due to gastroparesis. We stumbled on to the fact that she had POTS because, due to the gastroparesis, she was eating a lot of Lipton noodle soup. Her dizziness had improved some and it was getting a little easier for her to eat. The salt! You might need to take it easy, even when you are feeling ok, as this seems to keep reoccurring. Also, I would look into the postprandial hypotension as well. Lots of people have that. Best wishes!

For my daughters, it doesn't increase their heart rate. That being said, we do not use it in high concentrations like you find in pill form. There's no way they could handle that much. They would go through the ceiling! They would have severe ulcers, too. For my girls, the pills are so hard on their stomachs. We stick to getting it through drinks or the concentrated liquid caffeine at no more than a teaspoon (83 mg).

You don't say which stimulant laxative you use. Have you tried Miralax? In larger amounts, it is what they use for bowel prep for colonoscopies, I believe. At any rate, you can take a whole lot of the stuff. Also, magnesium citrate in the bottle works. I wouldn't recommend drinking the whole bottle at once, but you can. It will clear you out, too. After you get cleared out, you have to keep on a regimen of Miralax, or whatever it was that you found worked, and stick with it. Also, have you tried magnesium tablets. My daughter takes 800 mg a day. It helps muscle spasms, too. Give it a good try before you decide one thing doesn't work. You have to get cleared out first. I speak from years of experience on this one. I hope you feel better real soon!

There's no flavoring or sweeteners in it. You can buy one with Stevia, but my girls don't tolerate the artificial sugars. It's just concentrated caffeine in a 16 oz bottle. I'm not sure what the caffeine source is, though (I might contact them and ask). They squirt a few drops in when they feel like a little caffeine, but not so much that you are zippin'! This is so they can add it to a VitaminWater that doesn't come caffeinated or something else other than sodas. The fizzies get to be too much and it's nice to have water sometimes. I've never tried the other kinds of drops, but my youngest said that it doesn't bother her stomach as sometimes coffee would. Hope this help!

So, went to the orthotist this morning (8:15!!!) and he spent a good hour with her watching her walk and fall, walk and fall. He tried some of those braces with the knobs on the sides to adjust how far your knee extends, but when she walked, the knobs were rubbing as her legs moved. When that happens, it would through her gait off so much that she was walking in circles!! He said, well, she's not going to get anywhere at that rate!! With the big braces on and stabilizing the knees, it then made her hip joints and ankles really unstable because it was putting more pressure on them to take over. He has a friend who did his master's thesis on Ehlers Danlos and joint instability and has been contacting him regarding my daughter. So, couldn't have found two more knowledgeable people, but, nevertheless, he was a bit stumped. That being said, he did try some simpler versions with the metal boning within the brace and she could actually walk in them and her knees felt more stable. I explained to him that it started as sort of a pre-syncopatic episode thing, but now is just totally joint instability. He tested her muscles and said that her muscle strength was good. He wished it were her muscles, would be easier to treat. Thinks it's the ligaments or possibly a spinal issue. He's recommending an MRI of her lumbar area to see what's going on in there. When she was little, she actually sat down one day (she was about 4) and said that her legs were tired and couldn't move any more. So, the leg weakness has always been a problem as far as endurance. Now we've got POTS and joint instability thrown in there too!

My daughter has all-out cervical instability, not just craniocervical. Her biggest symptom and probably the earliest was her vertigo. They think it is due to the spinal cord being pulled due to the way her head sits. Also, horrible headaches, migraines, neck pain. All right there together. Also was diagnosed with pseudotumor cerebri with blurred optic disks and optic nerve inflammation. (How's your vision?) POTS stuff came later. The gold standard is a flexion/extension MRI of the cervical spine. My daughter's neck has a kyphotic curve instead of the normal lordotic so they didn't feel comfortable doing the flex/ext MRI on her. When her head flexes too far forward, it impinges her corotid arteries and she passes out. They didn't want that happening under anesthesia. The cause of her instability if muscle weakness due to ligament laxity and the instigator in all that is Ehlers Danlos Syndrome. I totally understand the information gathering before hand. A very smart thing to do! I'm happy to answer any more questions you might have. We've been dealing with this for a while and her surgery is in a couple of weeks. She will have C3-T3 fused with the possibility of O-C1 and C2 also if they don't get the stability that they need. It's a two neurosurgeon deal and roughly 8 hours long! Going to be a grueling day and following days for her. Best wishes to you!

Hi WinterSown! I order it from liquidcaffeine.com. A teaspoon equals 83mg of caffeine. Needless to say it's concentrated, so it lasts a while! Can add it to water!!

Thanks for the laugh, Kim!! Hurray for caffeine! Works well for us, too! Actually buy straight caffeine bottles (16oz.). Vasoconstrictors help us a lot.