DizzyGirls

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  1. Corina, Thanks for the recommendation of a wake up light. I've not heard of one of those. Could be an option!
  2. I was just sitting here with my daughter reading these posts to her and she said, you know, I'm really lightheaded and my vision is blurry. Could you take my pulse? So I did and it was 114 just sitting on the couch. She has been trying to wake herself up with her alarm and we are being reminded why we had to stop doing this the last time we tried! Thanks for sharing all the things that trigger you all! It explained why she was feeling bad!
  3. Hi Melinda, I don't believe that you always have to see a specialist to treat POTS. If your family doctor knows about POTS, by all means, let him/her treat your daughter. It's just that mostly it is only the specialists that know enough about it to treat and actually monitor the results. We have an Autonomic neurologist at Stanford, but some of our other neurologists didn't really know much about POTS aside from maybe a short chapter they had once in med school. The key is just finding that needle in a haystack. Best wishes to you and your daughter!
  4. Due to craniocervical instability and, well, complete cervical instability, my daughter is going to undergo a spinal fusion from her occiput to T5. We have found a great pediatric neurosurgeon, who also makes exceptions for adults, at Stanford, Dr. Grant. We are sincerely hoping that this will greatly improve her vertigo that she has been dealing with for 9 years (hence my username!) and a good chunk of all the strange neurological symptoms as well as some of her autonomic issues. It has taken us a very long time to put all the pieces together, so much so that I believe it ended up being a bigger fusion than needed to be if it would have been caught early on. Dr. Grant asked who the doctor was that put all the pieces together, as her MRI alone wasn't remarkable enough for an untrained doctor to think that all of the symptoms would be taking place. I told him that it was her PCP. He raised his eyebrows and commented "smart man". I said yes. But it was all my harping on him about Ehlers Danlos and Dysautonomia that finally led him to actually look those things up. He calls me on a Sunday morning a few months ago and says, I think she's got Chiari malformation! I'm like, duh. Well, as Dr. Grant said, it didn't end up being Chiari, but all the symptoms pointed toward Chiari and a syndrome called Cervical Medullary Syndrome. So, in my daughters case it ended up being cervical instability. Including but not limited to the atlanto-axial junction, clivo-axial, and kyphosis of her cervical area (C4&5 are bad!). I guess the moral of this update is to always research, be prepared, and keep on those doctors. Doesn't have to be a rock-star of a neurologist, etc. to figure this all out. I will be here hit and miss the next few months as we prepare and go through her surgery and recovery. Please keep her in your thoughts and prayers. Thank you all for your support!
  5. My daughter just had a similar experience with a tanning lotion. It's the kind that you use like hand lotion and then gradually you look more tan. It actually works really well and you don't look orange! I put it on her legs for her, as she's been very ill, and right away her legs started swelling, and turning red. She didn't have the POTS reaction like you, but she does have MCAS and seemed to have developed an allergic reaction. She's used this a lot in the past with no problem. We stuck her legs under the bathtub spout and washed it off in a hurry. Fortunately, no hospital needed.
  6. My daughter has a particularly stubborn case of thrush. It's not like she didn't have enough going on, but she woke up the day before yesterday with a fever and chills. Her tongue was all white and very painful. We had been trying some fluconazole that she had already, but that wasn't getting it. So, texted her PCP yesterday (his day off!) and he prescribed some clotrimazole lozenges. She has to take them 5 times a day for 2 weeks. Ugghh!! They are upsetting her stomach and not making her hungry at all. Has anyone ever dealt with this along with their other conditions? Was their anything slightly less nauseating that you found effective? She is going to try taking the tablets as much as possible because they actually do work, but we don't know how long she will be able to do this. Any help would be appreciated!
  7. Exercise is one of those catch-22 things. My girls' cardiologist was adamant about exercise, too. But, how??!! I've watched my girls try to do the things different doctors have said to try to be "compliant", but with results that leave them much worse than when they started. I would think that something like tai chi (sp?) might help, but I know that sometimes there's just enough energy to brush your teeth and that's it! No more spoons! I love my daughter's saying "I'm sorry, but I can't exercise today, all of my "spoons" are in the dishwasher!" Kids, so clever! Food that is hard to tolerate? Yes! I agree with Marcus, the higher the fat, the harder to digest. Boiled eggs, yogurt, peanut butter (in small amounts) seem to do well with my daughter with gastroparesis. It's important they get enough protein. Just thought of a supplement that the GI doc at Stanford recommended to us. It's called iberogast. I found it on Amazon, but think she mentioned it might come from Germany. Don't quote me on that, though, just seems like she said you had to get it out of country. We have not tried it, so have no idea how it works, but, it was recommended by a reputable source. Hope this helps! Don't hesitate to ask questions, I don't mind!!
  8. Hi Motherof3girls! I'm the mother of two girls! Both have POTS, Ehler's Danlos, and my oldest has craniocervical instability along with Mast Cell Activation Syndrome. Both of the girls started showing signs of POTS when they were about 13. I think that puberty is about right, not that it causes it, but my girls' neuro said that if you have something at all, puberty is the likely culprit to sending something into orbit! It's not that it causes it, it just makes it worse. Sounds like she does have POTS. For tachycardia, my oldest takes propanolol 10 mg, once a day and both of them take Florinef. While it's not a cure-all they help. My girls have vertigo terribly, so we always have that to deal with besides the POTS. But the important thing is to keep looking for a neuro or cardiologist that is up on the latest info on POTS. Most local cardiologists don't have a clue, but every so often you can find one. Like finding a needle in a haystack! For now, eat a high salt diet and drink Smartwater until you can get some help. That's how we figured out the girls had POTS. My daughter was eating a lot of Lipton Noodle soup because she was fighting gastroparesis, and her vertigo started getting better. It was the salt! So, keep that salt shaker handy!! Please feel free to ask any questions, there are a lot of really great people here and we are ready to share what we've learned with you!!
  9. I buy essential oils from Rocky Mountain Oils. My daughter has her little stash of Peppermint and the Hungarian Lavender. The lavender is supposed to help dizziness. She has horrible vertigo and she puts a little behind her ears and it helps some. It's not a cure-all but it gives her meds a little boost. The peppermint she puts on her stomach and sometimes we use it in some hot, steamy water to clear the sinuses. It's a nice clean smell, too! They run sales, too, so it can be affordable. Also, for sweeteners, have you tried Agave syrup?
  10. Hi Emily - sorry it took me a bit to reply... Exercise, well, at the moment, no. My oldest has severe cervical instability and it has caused a whole host of neurological symptoms, so she is almost bed bound. She tries to get up and around when she can, but that, at the moment, that is the sum total of her exercise. My youngest is trying to do her isometric exercises to help her knees. She's got very week knees and has recently subluxed her patella on her left leg, so it is braced and she is getting a brace today for the other knee, as it is weak also. She was exercising and it just got to slipping around too much. I'm with you on the gastro testing. I told a GI doc recently, I know she's got slow motility, so it seems a waste of everyone's time and money to do a test to prove it. These poor kids are tested to death as it is, I'm not in to doing anything more than the absolute necessities. That being said, sometimes you do have to jump through their hoops to get something to help them, though. I would say, I'm not a doctor though, but that the CFS is most likely POTS. There is so much fatigue with POTS because your body is always trying to do something it's not supposed to do, or some other part of it is just too sluggish. But, I think they all come from the same source: POTS. That is strictly my opinion and I have now medical degree (although I was asked once, based solely on the fact I could pronounce my daughter's medication!) I would definitely keep that appointment with the rheumatologist who has the special interest in EDS. Would highly suspicion that could be a possibility. You don't have to be subluxing or dislocating constantly to have EDS. My oldest is extremely hypermobile, but she doesn't sublux much. But the doctor (well know neuro at Stanford) was very confident that she had it. Her sister, too. POTS and other autonomic issues go right along with EDS. To help with the stomach issues and nausea, we use a multiplicity of things: Reglan - it helps motility. Start slow though, real low dose. Bet she could get away with half of the dose a GI would recommend. Too much and it can produce an anxiety type effect. We use the liquid. It's easier to fine tune the dose. Also, Zofran. Greatly helps with the nausea. If your daughter benefits from being somewhat sedated, try Phenergan. It's an antihistamine, but is a wonderful anti-nausea. Would be best not to take the phenergan too close to the Reglan, though. They have a propensity to not work well together. Can cause some side effects. My oldest was little at the time and her motility was so slow that she was hardly eating. After much testing and finally finding a wonderful pediatric GI, he put her on Reglan. It changed her life. She started thriving. GI tract started working a little faster (but not too fast) and her stomach would empty better so that she would actually feel hungry. I know a lot of people don't like it, but the only doctors that don't seem to care that she has been on it for a long time are her GI docs! Amazing! Hope this helps! If you have more questions, ask away!! Always here to help!
  11. Was reading this thread with interest as my daughter went under general anesthesia yesterday to do a full spinal MRI. She also has dysautonomia, POTS, MCAS, etc. She actually does really well with propofol. I did ask if they could run a bag of saline while they had her under, as she was getting dehydrated from not drinking (she drinks about 4 liters a day). Oddly enough, she has a couple of better days after the anesthesia and does look forward to it. We had an absolutely fantastic anesthesiologist who actually stayed by her bedside for about 45 minutes after the MRI, just so she could watch her extra (due to her dysautonomia and other neuro symptoms). So, just to play devils advocate, not everyone with dysautonomia would react adversely to propofol. Sounds like there could be a distinct connection to Hyper-POTS. My daughter, as far as I know, does not have hyper-POTS, so maybe that's the difference. Anesthesia is always kind of a guessing game on any given day. Never really knowing for sure that you will react the same each time. In all likelihood, my daughter will have to undergo surgery soon for cervical instability and I hope that she does as well under a longer surgery (about 4 hours) as she does for a 2 hour MRI.
  12. Like Kalamzoo said, has she been checked for Ehler's Danlos Syndrome? Yes, Reynaud's, too. With EDS, my daughters have all those things and more. Don't ask me why the heels, but they both had problems with their heels when they were little. Just couldn't walk on them. My youngest walked on her toes for the longest time. Someone once asked if she was practicing to be a ballet dancer? Hardly, but she can take her leg and stick her foot on her head! Hypermobile much?! Would forgo the orthotics, nothing really helped. That part just went away on its own. We know about CFS, too. There just isn't enough energy to exercise, and the exercise just makes an already tired person even more tired. It's a vicious circle. The stomach, yes, that's a big part of this too! Propanolol for my oldest for her tachy, works wonders. Ten milligrams is all she needs. Some people need more, but so far that dose works for her. I wouldn't go to just any neurologist, make sure they are really savvy about dysautonomia, POTS, and hopefully, Ehler's Danlos. We go to Stanford, Dr. Jaradeh. He's neuro, but he runs the Autonomic Disorders Clinic there. He's super hard to get a follow up appointment for, but if you see his PA, Irina, you can get in a lot quicker and she's good. Best wishes to you and your daughter! Don't hesitate to ask questions, everyone here is super nice and there are some very knowledgeable people, too!
  13. I get a lot of shortness of breath, too. I, too, thought it was my allergies, mild asthma possibly. I used my Flovent inhaler for a while, it was helping, but I was still having some symptoms. I tried taking a Sudafed (just one) to see if it would help, and it did! So now, with the idea of Sudafed being a vasoconstricter, I realized that it was probably due to POTS more than it was my allergies. My heart rate gets really low sometimes, as well as my bp and the Sudafed gives my blood vessels a little boost and helps my shortness of breath a lot! Just an idea!
  14. A few years before, her PCP had checked her tryptase levels on a whim trying to find out what was going on. I don't remember what symptoms she was having, but there must have been something going on at the time to cause him to look. Her level was 17 at that time. Her recent level came out to 11 and that is on h1 and h2 blockers. But, that being said, I think her Mast Cell issues are the least of her worries at the moment. About 10 months ago, she started having bad erythromelalgia flares and we thought it could be from MCAD, but it is looking like now it is most likely due to a severe case of cervical instability. She will be having an MRI as soon as possible to check the integrity of her spinal cord. The neurosurgeon is most sure that all her strange neuro symptoms are being caused by the fact that her spinal cord is being impinged.
  15. My daughter had her tryptase levels checked as well as plasma histamine levels. Also, a 24 hours urine collection checking for histamine levels. Her hematologist was the one who prescribed these tests and keeps track of her mast cell issues.