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About DizzyGirls

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  1. Newbie-Frustrated

    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!
  2. Please don't judge need advice

    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).
  3. Constipation not responding + bloating, nausea

    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!
  4. Please don't judge need advice

    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!
  5. Knees Buckling - very weak legs

    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!
  6. To those with craniocervical instability

    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!
  7. Please don't judge need advice

    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!!
  8. Please don't judge need advice

    Thanks for the laugh, Kim!! Hurray for caffeine! Works well for us, too! Actually buy straight caffeine bottles (16oz.). Vasoconstrictors help us a lot.
  9. Knees Buckling - very weak legs

    Thanks gals! This is all very helpful. Even if you don't know what to do, it gives me some ideas. It does definitely seem to run with those who have EDS or think they might (Kim : )!) We are dealing with more issues as we are getting closer to my other daughter's surgery for cervical instability. But, this does really seem to run with fatigue. In the beginning, it seemed to happen with POTS symptoms, syncope, etc. But now, seems to be strictly fatigue. She has no endurance to begin with and when she pushes herself, well, like anything, it makes it worse. WinterSown, she has learned to shop online, A LOT!! At 19, you just can't take that shopping bug out of the girl! Both of my daughters just love Forever21 and it is so much easier to find things online than in their store. I absolutely loathe going to their store, but online, piece of cake. Stores, the music is too loud, their stores are a mess, no organization, and they are really busy. Can you say POTS attack!! There is so much more selection online, too. The only time she goes to warehouse stores like Costco is when we've ordered her new glasses and she had to go pick them out and then have them fitted when they came in. So glad we only have to do that every 2 years!! Didn't think we were going to get past the doorway! All the commotion, merchandise, she just collapsed. She's going to the orthotist tomorrow to see about new braces. We'll see what he says. He's somewhat knowledgeable about EDS as far as the joints, just doesn't understand the dysautonomia part of it. I'll let you know what he says!
  10. Knees Buckling - very weak legs

    Hi all! Thanks for your input!! Another question for you: do you all have Ehlers Danlos? What's happening to you three sounds like the same thing that is happening to my daughter. Kim, you said you are suddenly a rag doll. Yes, that is exactly like her. She does look like a baby giraffe when she tries to walk sometimes. Sometimes she looks a bit like an ostrich because of how she is trying so hard to get her body to move where it's supposed to go. Often this is worse while she is just standing. Momentum seems to be her friend right now. She'll say it's like her bones in her thighs (pardon the brain fade on the anatomy right now!) have to balance on the bones in her lower leg. No muscle strength to hold them together. BuffRockChick and WinterSown, maybe it is neurological in nature. We are a little shy on neurologists right now because the one we were seeing is on the 6th floor and my daughter can't take the elevator up because of her vertigo. So, right now he is out of the question. Her knees can't go up one flight of stairs, let alone 6! Does this happen sporatically in you all or is it progressive. My daughter's seems to be progressive. It just keeps getting worse. In the morning she's not too bad, but the later in the day it gets the worse it is. This also happened in Costco one day. Do you all have Costco (big warehouse store)? Anyway, we got inside the door, fortunately we brought her crutches, but she about crumbled. Her knees went limp and about ripped her arms off trying to fall and hold on to the crutches. Seriously wondering about a wheelchair at times. Thanks for your help!
  11. I am trying to figure out a new problem of my youngest daughter (almost 19). Her knees keep buckling under her and she falls. Maybe as many as 20 times a day. She can walk pretty good in the morning, but by evening, they won't hold her up. She said it feels like her hips are unstable now, too. She's got a brace for each leg to hold her knee caps in place, but when she was fitted for them the orthotist did indicate that these would not hold her up. They were just to keep the knee cap in place. She started this last year. We were at a wedding (lots of stimulation, hot, loud, a lot of people) and when she stood up and went to walk after the ceremony was over, she fell. Not once, but the next three steps she tried to take ended her up on the ground. I have told her at home for a while now, make sure you have your legs with you when you start to walk. I'm not sure if this is Dysautonomia, EDS, some form of ataxia, a spodylesthesis in her lower back, but I needed to start somewhere. So, please let me know if you have leg problems, too! Maybe somehow we can make sense of all this! Thanks!
  12. red hot knees?

    This sounds so simple, but have you tried Ibuprofen? Just wondering if a few doses of an anti-inflammatory might settle it down. If it does work, might tell you that it was inflammation and then you might have an idea of what you are dealing with. Back to the old process-of-elimination theory!
  13. Coffee and Valium for Vertigo.

    We do the same thing! And, actually, their old neurologist and cardiologist are using caffeine in a lot of different ways and didn't discount the idea! We started doing the coffee thing (it's the caffeine actually) a few years ago when the girls were allowed to have coffee (gotta love Starbucks!) and discovered that the caffeine helped the vertigo some (in addition to the diazepam or lorazepam). I used to get a lot of migraines and I always treated them with a healty dose of caffeine...vasoconstrictor action. So, we started treating the vertigo the same way. Their vertigo has actually gotten worse in the last couple of years as the rest of their symptoms have increased. Still haven't found the exact cause of it, but my guess is the dysautonomia along with their Ehlers Danlos and cervical/craniocervical instability. A very complex population, those of us with Dysautonomia/POTS, EDS, MCAS. If you don't have any problems with the caffeine increasing your bp or hr too much, why would it be bad for you when all you are experiencing is relief? We actually buy straight caffeine (not coffee) from this place online so that we can add a few drops to things other than coffee or sodas.
  14. Fevers

    My daughters (oldest especially) have had trouble with low grade fevers for some time. My mom, too. My mom has lupus and was just diagnosed with dermatomyositis, she also has EDS. They can make you feel quite unwell at times. Especially since my daughters' temps have always been around 97.6 instead of 98.6. We also think that my oldest could possibly have lupus. Not sure. She comes up with positive ANAs at times with a titer around 1:80, which isn't high.
  15. Tryptase Levels in POTS/EDS

    Hi Craig! Welcome to the forum! Here you will find a whole host of people that will, hopefully, be able to help you find information you are looking for! My daughter has, what I would say, mild MCAS. She has EDS/POTS/MCAS and her tryptase levels at age 12 were 17. At age 17, they were tested again and were still about 15, I think. At that point they did a bone marrow biopsy to check for mastocytosis, but, hurray, it came back with no extra mast cells in her bone marrow. They did conclude, that her mast cells were just a bit overactive. She takes a combination of Benadryl and Zantac to hopefully keep it in check, but, after some blood work (still on her meds) her tryptase came back at 11. So, it's down, just not gone. There is a paper put out by Dr. Afrin that is great! If you search through the old posts, there should be one by Katybug and there is most likely a link to his paper. She has real trouble with MCAS. Even though my daughter's MCAS isn't her main concern, she does have a whole host of other neurological symptoms and will be facing spinal fusion surgery in a couple of weeks. Hope you find some answers here!