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DizzyGirls

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Everything posted by DizzyGirls

  1. My daughters use Liquid Caffeine (from liquidcaffeine.com) to help them get going and get the cobwebs out in the morning. Coffee was upsetting their stomachs, but small doses of the liquid caffeine help. Don't feel bad about having to take medication. You kids have been dealt a really bad hand and if it takes some medicine to get through life, so be it. I'm sick and tired of doctors making you all feel bad because of it. If the adderall is helping, fight for it. Maybe your new doc will have some suggestions that might be better suited to you.
  2. My daughter seems to be having more symptoms. Seeming to need more florinef, but she isn't able to tolerate more than one tablet a day. She's tried midodrine, but, like the extra florinef, causes really bad headaches. I can tell when her florinef is wearing off, her bp goes way down and she's been passing out a lot in the later afternoon and evenings. She's been on it since 2015.
  3. Hi ANCY! I am so sorry you are still feeling so bad!!! M had a bone marrow biopsy a few years ago. You can do this. I would recommend some moderate sedation, though. It would make it far more comfortable. Has anyone checked you for autoimmune? Would it be in the realm of possibility that someone hooked up a bag of blood that wasn't your type? Yeah, mom!! Sometimes we just have to step in there and tell THEM what needs to be done, not the other way around. Hang in there, and still prayin! I'll text you tomorrow, M has a lumbar puncture in the morning, more pseudotumor cerebri again. Lots of Hugs!!
  4. Thanks! I'll look into it. We live in California, so have several major universities that we go to.
  5. dizzytizzy - Yes! The racing you describe is exactly what she's feeling. Think she better get that norepinephrine test that you and a couple of others have described. Hope your head gets better, too!
  6. Hi all! Thanks for all of your responses! So it sounds like from what several of you have said, that this racing feeling, low bp, syncope, and heart spasms (?) have to do with her POTS. Kind of thought so, but the heart thing and racing feeling was making me nervous. Makes sense, though, why she doesn't come around easily when she passes out, her blood pressure is too low. Yes, she is on Florinef, but it seems to be wearing off about mid day. I tried upping her dose, but it was making the pseudotumor cerebri a lot worse. Head felt like it was going to split in two. Too much pressure. She hasn't had her norepinephrine levels checked at all. Is that a blood test? When about 4:00 p.m. rolls around, she starts getting really lightheaded and dizzy. Now I know that it's when her bp drops. Not sure why. I am still wondering if all this POTS stuff is still related to her untreated Hashimoto's (working on that) and the pseudotumor is separate. About once a year she has to have some of her spinal fluid drained off and it helps. Some people are able to take Diamox to keep that from happening, but it is a diuretic so, guess what happens?? She passes out every time she stands up! So, sounds like we are stuck with the lumbar punctures. Not sure if the condition is permanent. Probably depends on what's causing it. The neurologist is sending over a referral as we speak to the hospital to have the LP done. dizzytizzy - symptoms for idiopathic intracranial hypertension are: headaches, migraines (especially while standing, relieved some by laying down), vertigo, a ton of pressure in her head and neck.
  7. Hi all! Hoping to get some suggestions from you all before I talk to my daughter's neurologist tomorrow. She's been having trouble staying conscious in the late afternoon through evening/night. I took her bp readings today and found that her bp was 92/52, heart rate 101. No wonder she was passing out, but why was this happening? So, she sat up and we took it again. This time it jumped to 109/84, heart rate 109. Heart rate was just a little above her normal (high 90's). She was also more alert with her pressure higher. She's also been feeling like her whole body is racing. It comes on when her bp drops like that. Makes her feel like she's coming out of her skin. Also feels like something is squeezing or putting pressure on her heart. All of this happens at the same time. Can anybody shed a little light on these symptoms? In addition to all of this, she is pretty sure that she's developed pseudotumor cerebri again. It means another lumbar puncture to release some fluid.
  8. There were no rhyme or reason for my migraines until I had hit 40, then they were hormone related. Fast forward 12 years and now it's anyone's guess why they appear. The triptan drugs don't work on me. I use an old drug called Fioracet. Works like a charm! I can actually function on them. I've had migraines send me to the hospital, so some of them were exceptionally bad, most were just your typical migraine (dark room, quiet, sure your head is going to crack in half). I don't have POTS, still undecided about EDS. My daughter, however, has EDS, POTS, newly diagnosed with Hashimoto's, tons of knots in her upper neck and shoulders. Most of her migraines seem to be related to her POTS, but she can develop pseudotumor cerebri and that brings them to a whole new level. We are at about that point right now. She will most likely need a lumbar puncture to reduce the spinal fluid pressure. The migraines are constant, as is the vertigo, pressure in her neck and eyes. A fast acting headache doctor she saw a couple of times a few years ago, recognized the symptoms and rushed her in for a CT guided (due to past surgery and scar tissue) lumbar puncture. Hers had gotten so bad, that her vision was blacking out every so often. It had caused inflammation in the optic nerves and optic disks of both eyes. So, you might want to present this to your neurologist if you have an increase in migraines. You can lose your vision from it.
  9. Sorry for the slow reply, my daughter is feeling really bad today. Lots of vertigo, neck pain, headaches, and really hard to keep her conscious. I've been giving her 1-1/2 florinef in the morning and I gave her 1 this evening because she kept feeling lightheaded and almost passing out. But, her pain is really bad and it's getting harder and harder to keep her conscious, especially in the evening. She said it feels like something is cutting off the blood supply to her neck. When she turns her head to the right, it triggers a migraine and tremors. This is the side that she also has the thyroid nodule on. It's 2 cm the doctor said. The biopsy is early Sept. She has an MRI of her head and neck in a couple of weeks. Maybe that will show something. Also have an appt with her neurosurgeon the following week to see how she's doing a year after her spinal fusion. I feel like saying to him, "about that thyroid, doc". We have doctor appts scheduled into October already. About 1 major appt (excluding PT) a week. I call the ones at Stanford "major" ones. Not just PT or something simple. She actually has one in January for the cardiologist at Stanford that specializes in Dysautonomia. We made it about 2 months ago. Anyway, thank you for all your help and if you all think of anything else, please let me know. : )
  10. Just curious, what type of autoimmune disease were you tested for? I haven't seen these before. My daughter just tested positive for Hashimoto's disease (autoimmune hypothyroid). I suspect she might have other autoimmune issues as well.
  11. Thanks ladies!! This WAS a female endocrinologist who also stated that these are very reliable tests. Well, how many of us have heard that before!! I should have thought to post her labs, but here they are: TSH - 4.34 T3 Total - 113 T4 Free - 0.9 Cortisol - 15.7 A couple of weeks ago these labs were run: TSH - 2.48 T4, Free - 0.9 AntiTPO Ab - 32.1 ANA - 1:160 Btw, do any of you have bad muscle spasms? My daughter has horrible spasms. So much so that it restricts blood flow to the brain and she passes out from it, much too often. She has hair loss (a lot), weight gain, cold all the time, dry skin and hair, constipation, debilitating fatigue, etc.
  12. Does anybody else have Hashimoto's? My oldest daughter was recently diagnosed, but her labs indicated that her thyroid was still working but her body is saying otherwise. Her orthostatic intolerance has gotten to an all time low. I just recently had to up her Florinef to 1-1/2 tabs in the morning instead of 1, because every time she stands up, she passes out. She's also been passing out a lot at night and I can't figure out why. I'm tempted to give her 1/2 a Florinef to see if that helps. The doctor won't treat her for her thyroid because her labs aren't all out of whack yet. Guess she's got to be dying before treating her. Her ultrasound also showed that she has a nodule, too, that she has to have biopsied due to it's size. She's not looking forward to that. Today is her one year anniversary of her major spinal fusion last year. It's been a rough road. Some things have improved and some things have gotten worse. Back to the Hashimoto's, though. How do any of you handle your symptoms and treatment?
  13. When you are going to sleep... that would most likely be when the sympathetic is supposed to relax and parasympathetic takes over. Sounds like yours isn't working like that. My daughter's pain and tremors seem to come when she is at rest or in the evening and at night, especially when she is trying to go to sleep. Hang in there!
  14. I have been trying to find out for the past two years why my daughter has bad tremors while she's at rest or trying to fall asleep. There's pain, then tremors, then she'll have these contractures or postures that are from the muscles pulling so hard. She hasn't been able to relax and enjoy an evening since 2016. She also tends to be unconscious as well.
  15. This is great! I love to see stories like this in the news. It's so unreported. Thank you for sharing!
  16. My oldest daughter has lived with vertigo for the past 10 years, my youngest for the past 6 (but she also had it when she was 3). Theirs is caused by dysautonomia. They have it 24/7. It never completely leaves, but it does fluctuate in its severity. Good luck to you. This is not a fun one!
  17. Sorry, haven't been following the thread, my daughter's been really sick, but wanted to throw this in the mix. Her ANA over the past several years has been mostly positive with a 1:40 titer, speckled pattern. Rheumatologists would just laugh in her face, literally, even though there is strong family history and she was symptomatic. Jump to last year and her titer increased to 1:80. Hmm, still no go with a rhematologist that we decided to give a second chance. That was a mistake. Fast forward to a couple of weeks ago when a very zealous movement disorders neurologist determined she was going to get us some help and ran some out of the box labs. Her ANA is now 1:160 (doubled since the previous one), pattern is homogenous (I keep forgetting to look that one up) and her Anti TPO Antibody test came back high (autoimmune thyroid test). It's supposed to be less than 6 and my daughter's was 32.1. So, the moral of this story is, just because your ANA is low now, it might develop into something later. My daughter's condition is screaming autoimmune thyroid. Most likely Hashimoto's or something I ran onto today, Autoimmune Hypoparathyroidism. If you have any symptoms of thyroid, don't just go by the normal TSH, T3, or T4 panels. Make them run the Anti TPO Antibody test. The doctor had commented that no one ever tests for this one and she didn't know why. So thankful she did! Read something by Dr. Graham Hughes (foremost authority on Lupus) and he was asked if someone had a low titer, but was symptomatic in addition to having a strong family history, would he treat them or wait and see what would happen. He said he would treat. Always treat in those situations. So, don't let the medical profession act like there's nothing there. There just might be and the sooner you get treated, the less damage it will do to your organs.
  18. We think we might have found out what has been causing my daughter's spasms/dystonia/tremors. The assistant doctor called a couple of days after our appointment at the Movement Disorders Clinic with results from one of the labs they had run. They had run an anti-TPO antibody test. It's a rarely run test that checks for autoimmune thyroid disease. The highest it's supposed to be is 6, but my daughter's was 32.something! I'm sure you're asking how does dystonia, tremors, spasms and such fit in. Well, I did a little research and found that muscle spasms are a little known symptom of autoimmune thyroid disease, which I imagine is simply Hashimoto's disease. I've been asking our PCP to check her thyroid more thoroughly for the past couple of years, but his basic test came back fine, so he wouldn't check further. No wonder the poor thing has been suffering so much. You might ask one of your doctors to run this very specific test. Not just the normal thyroid panel, but this specific test. I would have never thought that these muscle issues were related to thyroid. I'm sure your wife would appreciate them getting to the bottom of it! My husband has big feet, too! : )
  19. My daughter has been suffering from what her neurologist had termed "generalized dystonia". With that, he sent her to a Movement Disorders Clinic at a major university near us. Near is a relative term. We didn't have to go out of state. We had a 2-1/2 hour appointment with the unfortunate news that they only treat primary, genetically mediated dystonia there and hers is atypical. Definitely on the spectrum, she said, but not anything that she could treat because she's already on any medication she would choose to treat it with. Because it's not primary, it most likely won't respond to the normal Botox, as we've found out already. I have high suspicions that it is autonomically mediated after watching her go through this the last couple of years. Because of that fact, she had no clue how to treat that. We would have to see a neurologist in the Autonomic Clinic. Most likely a wait of another few months. Whenever she relaxes, this horrible, overwhelming pain hits, then come the tremors or intense cramping spasms. I call it posturing because, say it was her hand, it would remain that way until you apply some heat to make the muscles relax. This can, and does, happen to any muscle in her body. The muscles squeeze her bones so tightly that they feel as though they will break. The fact that it seems to be autonomically mediated explains why her GI tract is so horrible as well as her bladder. I know for a fact that when her sympathetic relaxes and parasympathetic is supposed to kick it, something goes haywire. It's the only thing that's consistent. I am looking for any information, medical journal articles, etc. on anything that might relate to this theory. If anybody has anything to share, I would appreciate it!!
  20. Yes! Two. That is two out of approximately 14 DIFFERENT neurologists. Over the span of 22 years that my daughter has been alive, we have seen roughly 14 different neurologists. Only 2 have been worth anything. Our current neuro is limited to treatment that a local clinic offers. He's not at a major university. He is kind, funny, and sympathetic and I wouldn't trade him for anything. He was the one who wrote the referral for my daughter to get in to her neurosurgeon. He saved her life. I don't know what was on that referral, but we got in within 2 weeks. The other neuro diagnosed my daughter's EDS.
  21. Forgot to add this, but they both feel a little better when they've had oxygen.
  22. My daughters get really lightheaded when they talk too much. They can't do long phone conversations or especially standing up in one spot and talking to someone. Talking in general for them is exhausting.
  23. I hope you see this before you go. It sounds very much like you have gastroparesis, which is caused by the dysautonomia. Try to keep your weight up, though. I've been through this with my daughter who is almost 20. I have a 22 year old, as well. Both have dysautonomia and we have had years of experience dealing with gastroparesis and other GI issues. Both girls have Ehlers Danlos Syndrome. You might ask the GI about it if no one has ever diagnosed you with it. Our GI is very knowledgeable, but we are in US, so doesn't sound like you have a lot of options. One GI doc prescribed Iberogast for her. It's natural and we got it off of Amazon. I'll be honest, we haven't tried it, although we have a bottle of it, but I know that it is from Germany. Thought you might actually have access to that. Also, are you lactose intolerant? I would try going off of milk for a week or so and see if your symptoms improve at all. If you go off of milk, you would have to check ingredients in everything you eat, not just milk by itself. For example, do you McDonald's there? The french fries are soaked in milk to give them that slightly sweet and salty taste. Really affects my daughters. It's things like that. Read labels! Do you have access to any nutritional drinks that are lactose free? If you can tolerate them, I would highly advise trying to drink a little at a time whenever you can. You shouldn't lose any more weight. Please update us after your appt! Best wishes!!!
  24. 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.
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