DizzyGirls

I'm just wondering if anyone else has noticed this...??? Anesthesia has a calming effect on autonomic symptoms and other things related to our illnesses. My daughter has Dysautonomia, EDS, and a very strange development where she just falls. The connection in her brain doesn't keep the signal to her legs in tact (starting to affect her arms, too). She's developed a new symptom where she can't walk straight, but her brain makes her walk in tight circles or backward!! When she starts going in circles, I have to grab my arms around her and grab her to keep from falling into the TV, or a window. If you interrupt her while she's walking, she falls or starts to go in circles. Last week she had an MRI of her brain; cervical, thoracic, and lumbar spine, as well. After the anesthesia was wearing off, she got up to go to the restroom and she didn't fall, she walked in a straight line, no walking backward or in circles. This lasted for about 5 days until she started going backward and in circles again. She's still not falling much, but her direction is going back to where it was. Anybody ever have any positive things come from anesthesia?

My daughter was at 1-1/2 pills once a day and her bp started raising too much. We spent about a month getting her back down to 1 pill and she is doing well (with that anyway). Her bp is a lot more stable, but she does definitely need that one pill a day. When she gets too lightheaded, she has a cup of ramen noodles or some other kind of salty soup. My thinking is this, if it's too much for your body, then it's a lot easier to back down. But, when your body needs it, it is very difficult. I think that kind of holds true for most meds.

My daughter's C4 has been low for years. It was about 9, I think. She's also recently had another positive ANA test with a titer of 1:80. However, when we went to a couple of rheumatologists, they just laughed in our faces. They were appalled that we thought she would have lupus from an ANA with such a low titer. The low C4 is also an indicator, as well as her constant low grade fevers. Oh, and to top it off, my mother has lupus. Guess we are going to have to fight this on our own. What else is new....???

Her hematologist didn't even really call it MCAD, so I asked her if it was safe to say that her mast cells were overactive and she said "yes". I find that sometimes doctors don't give things an official "name" like we do, they just tell you what your body is doing. Because my daughter wasn't having too many problems with it, she just said to take some Benedryl and Zantac and see if that helps. It worked well. I did notice after I had read your first post, though, that she is developing this rash on her chest. It looks like uticaria to me. Her other hematologist had thought she had had it once before and but changed his mind. So now, though, think this might be. She was taking high doses of Benedryl and, because some doctors were rather taken aback by this high dose, I've lowered it to 25 mgs 4 times a day. I'm wondering if the new lower dose isn't enough. I hesitate to give my daughter Zyrtec (even though I take it every night!) because she's on a lot of other meds (recovering from spinal fusion surgery-9 vertebrae). You might try looking at Costco or Walmart for cheaper versions of Zyrtec and Zantac. It's super cheap at Costco if you have one where you live. Also, there is a paper by Dr. Afrin on Mast Cell Activation Disorder that is probably the best around. I'm not so good at putting links in, so just Google MCAD and Dr. Afrin, you'll see it.

My daughter's symptoms were more allergy like. She would sit on the couch in the evening and scratch. I used to tell her to stop or she was going to scratch all her skin off. I gave her fairly high doses of Benedryl along with h2 blocker and it helped. A couple of doctors had remarked at the high dose of Benedryl, so we lowered it to about 25 mgs 4 times a day. Still helps, but she's had a couple of strange rashes as of late and I'm not if it's autoimmune related or MCAS. Still looking into that one. She has migraines and GI issues as well. She's not too sensitive to meds as a general rule.

We use Sudafed to help with vasoconstriction. Not sure how phenylephrine compares, but I think pharm companies use phenylephrine now instead of Sudafed in cold medicines these days. So they must be somewhat similar. Might explain why it helped you.

My daughter (21) has MCAD, too. She was tested back in 2011 by her PCP. Why? I'm not sure at that time. But, her level was 17 back then. She was recently tested for about the third time and it came back at 11. She's on a lot of H1 blockers and so it should have been a lot lower, but she couldn't go off of them and I'm glad she didn't because I know that she still needs her h1 and h2 blockers. We use Benedryl and Zantac the most. She used to always feel like she was itching. She never had diarrhea, quite the opposite. But, she has always had stomach issues. She has EDS, also. She had a bone marrow biopsy about 3 years ago because of her levels, and her hematologist just wanted to make absolutely certain that she didn't have mastocytosis. It wasn't, thank goodness. We haven't tried Zyrtec for her because of all of the other medicines that she has to take, unfortunately. But, I use Zyrtec every night. I swear by it! I used to save it for my rescue meds only, but I started developing vertigo and I decided to try the Zyrtec. Worked very well. Does your husband take an h2 blocker also? I've also heard people taking Singulair and having success. Btw, thank you for your service!

Most of my daughter's friends are online. They can pick and choose who they like and some have the same conditions they have so they can be there for each other, and others are just people they have other things in common with. I have met some truly wonderful people online, some I've met here and text when we have a moment. They are priceless!

The closest one that I can think of would be at Stanford. They have an Autonomic Disorders Clinic and it's run by Dr. Jaradeh and his very capable PA Irina Krugamova. He's great for the initial visit and she is good to follow up with. The wait list to see him is about a year, but she's easier to get into.

Kim, I agree! The girls started on the Florinef AFTER the TTT. Then you don't have to worry about stopping it and then restarting. They were evaluated at Stanford's Autonomic Clinic and their doctor didn't require them to pass out. My oldest's blood pressure stayed the same and her heart rate went up at least 40 points, never passed out but got real lightheaded. Her vertigo kicked in to full gear and the doctor was watching that. He was surprised. My youngest's blood pressure went sky high and her heart rate went up 30 points. Not a typical reaction, but he said she had POTS. Seriouslyjen, I would say that your reaction to your TTT sounds about standard, unfortunately. My girls had a cardiologist (after their TTT), that had absolutely refused to test his possible POTS patients with a TTT. He said it was barbaric! That's about right! I can't believe they are blaming it on dehydration. From the sounds of your post, it doesn't sound like that was the case at all. I have a hard time grasping the fact that doctors still don't know about POTS! How hard is it, people!! After my daughter's recent spinal fusion surgery, the PT had the goal of getting her up and about. She was just learning to balance her new back full of titanium and said she was dizzy and lightheaded. Think this was POTS and not her vertigo.. I told the PT several times that she will pass out, so be ready to catch her. Well, she did pass out, they weren't ready, and so they heave-ho'd her onto her bed at which point she passed out for even longer. Shortly thereafter her neurosurgeon came in and wondered what happened. Being that he had just spent 8 hours putting her together, he was not amused. He left my daughter's room and stormed down to the PT and told them that they had better start being more careful with his POTSy patients!! That really explains why all the therapists seemed so nervous when they came back to our room! Long story short, I would pursue a POTS diagnosis if you can. Sounds like this guy doesn't know enough about POTS and that most POTSies don't pass out completely. I have one that does and one that doesn't. But, they both have POTS. Everybody is different. Sounds like he is trying to fit you in a textbook. There is nothing textbook about any of us!

My daughter is currently recovering from surgery for cervical instability. They fused from C3-T4 due to lax ligaments and muscle weakness that caused her neck to form a reverse curvature because it couldn't hold itself up. She is 8 weeks out and is in the process of recovering from this "monster of a surgery with a brutal recovery" as her neurosurgeons put it. It was, however, necessary to save her life. She would have died had she not had it. Not only did she have unrelenting vertigo since she was 12-1/2 (21 now), she would lose consciousness due to her vertebral or corotid arteries being compressed. It also would compress her throat so that she couldn't breathe and she suffered from horrible nerve pain, muscle spasms, and a whole host of other neurological symptoms. They opted to leave C1 and 2 for now, but will most likely have to fuse those in a few years. We hope they hold that long. When she woke up from her surgery her vertigo was all but gone. However, as she has been recovering, it has come back due to the muscle spasms that are a part of this type of surgery. It's not like it was before, but she still has to take her meclizine and diazepam every day to keep it from being in a full spin cycle. Kim, I admire your research and thought process as to whether to have surgery or not and weighing your options carefully. It is definitely not for the faint of heart, that's for sure! Dizzyape, I would evaluate how often the vertigo hits, is it every day, once in a while, etc. How much is your life impacted by it. Those were all things that the neurosurgeons asked us before deciding whether to do surgery. It took us all of one visit to figure out that it was our only option. Are you able to work, go shopping, take care of your house, children (if you have any)? I do hope they can find something to help you other than surgery. Best wishes to you!

The movie was Tightrope,I think, about the Wallenda's. Sounds, a resounding "YES"!! Sound waves produce a vibration and that gets the girls every time. The bass in a lot of the music. Also mentioned was riding in a vehicle, particularly those that are bothered by swooping cameras. Another "YES"! There is so much that bothers people with Dysautonomia.

Anybody ever wondered if older movies/tv shows would make us as symptomatic? The cameras don't move around as much as they do now and there's something about the pixels that make things worse, too. Less stimulation.

I know what you mean by doctors thinking we are too obsessed with things....drives me nuts! I know what I would do is to make this a science project. Have a hypothesis and set out to prove it as theory. You will have to do this a number of times, time and date it, temps, too. After a couple of weeks, physically show the doctor your paper of times, dates, and temperature readings. My girls' POTS doctor tells us to do that. She wants data, more than just a one or two time occurrence.

Yes, MRIs are important. You never want to assume there isn't something like a mass. I'll elaborate on WinterSown, my girls actually turn around backward to "listen" to tv. They can't watch it, too much motion and swooping of the cameras these days. We are currently binging Gilmore Girls. Lots of dialogue and sarcasm!! Love it!

Sometimes the stimulation on social media can cause sensory overload in some people, just depends on how much stimulation you can take. I hope he gets some help soon. Does he have a competent doctor assessing him? Does he have any other issues like Ehlers Danlos or mast cell issues that would complicate things? It's so nice you are trying to help him!

I LOVE YOUR SHIRT!!!! I just showed it to my baby giraffe and she cracked up! Saw the neurosurgeon last Thursday and he watched her as she did all of her dips and drops and falls (almost hit her head on the sink in the room!). He's ordered a brain and full spinal MRI. His eyebrows just kept going up and I could see the wheels turning. He never says anything, though, until he gets the imaging back. Not sure what he'll say if it doesn't show anything. I do know, though, that he wouldn't say it doesn't exist! It's too obvious!! She's now taken to walking backward. Sometimes her legs won't go forward they will turn her in circles and she goes backward. I'm thinking more and more it's a neuro/brain thing, not an instability thing. But, he was so overjoyed to see my other daughter after her surgery. Nine vertebrae fused and she is looking so much better than the last time he had seen her.

IV saline is given at a clinic of some sort, prescribed by a doctor, and most people have infusions once maybe twice a week. I would imagine it varies with the person, though. Those that I know that get IV saline infusions have them done once to twice a week. It helped my daughter after her spinal fusion surgery recently. They tried to stand her up one day and she passed out. She had no compression socks on and no IV saline before attempting, so, of course, she passed out. It helps keep the volume up in your blood vessels to keep the blood circulating well. The only side affect??? It makes you pee!

Well, I'm not sure, but I'll share what I have found to be true with my daughters. They have Ehlers Danlos Type III, Dysautonomia, POTS, vertigo, cervical instability, and lumbar instability. They can't use computers because it affects their vertigo. We are not sure where the vertigo is coming from, most likely their dysautonomia and EDS. The pixels, movement of some things and just staring at a screen can all cause it to be worse. They can look at their iphones as the screen is small enough, but they can't be on them all day or they will end up really dizzy. Sometimes I think it has to do with too much sensory overload. What kind of symptoms does your brother have and what happens when he looks at a computer or cell phone?

We are going to see the neurosurgeon tomorrow...we'll see what he says. Glad your numbers were good! That's crazy, isn't it. We all have so much going on in our bodies, but the numbers always come back fine.

Oh, I love apple cake and I'll bring my BIG coffee mug! That is a really bizarre story! It's strange, when my daughter puts on any kind of brace, whether they are knee braces, a back brace, etc. it makes her body unable to coordinate itself or hold itself up! I'll look into the Achilles tendon, too. You are so right about the balance and strength. It takes both. When her legs are tired at night, it's horrible! I'll have to ask her if she feels like part of her legs aren't there. She's not mentioned that, but, it might not have occurred to her. Sometimes you don't notice things until you think about it. When this all first started, we were at a wedding and it was loud, stuffy, crowded, and had been sitting in one spot far too long. She suffers from sensory overload, so when you put all those things together, it makes for "baby giraffe syndrome"! Ha, that's a good name! She fell three times before we had gotten but 20 feet from our seats! I think it's a combination thing of dysautonomia, fatigue, instability, and probably something neurological. We are seeing a neurosurgeon next week and will ask him his thoughts on it. I'll let you know what he says!

Yes, cherry pie and coffee! I'll join you! My daughters struggle with vertigo too, and they could never do any of the balance testing because it would have been dangerous for them to be off their medicine for 48 hours. The drop attacks are interesting as my youngest has been falling around 10-20 times a day. I think hers might be different than yours and it appears to be some sort of instability in her pelvis and whatever connects that to her legs. She looks like a baby giraffe trying to stand! I'm going to look these drop attacks up, though....just in case! I hope you get yours figured out. It's really hard to get around in this world when you drop all the time!

We have a website for our neighborhood called Nextdoor. A few days before my daughter's surgery, my dad put a plea out to the neighborhood to see if anyone had a rollater walker for sale. Within a half hour there were three people offering to drop theirs off for free! They were PTs and they said when we were done with it, just pay it forward. My daughter is 19 and she brought it to Stanford with her and decked out the basket with signs that read #Dysautonomia, #Its not all in my head, and #Ehlers Danlos Syndrome!

My daughter sees a hematologist for hers. The Tryptase level the first time she had it run was 17. This last time when it was checked, it was 11, but that was on h1 and h2 blockers. Should have been a lot lower.

I would avoid UCSF for anything remotely related to dysautonomia/POTS, etc. My daughters were two of the first kids seen there and we did not have a good experience.