DizzyGirls

Oh dear! Always in my prayers! Hang in there! Gentle Hugs

p.s. I thought that hyper pots was when your blood pressure went sky high. I'm sure one of the admins will weigh in on this. Think SarahA33 had a lot of personal experience with this. Wealth of information, too!

Hi Kalamazoo! My daughter has erythromelalgia, too, and her symptoms sound like yours. It's not a common thing, but it does have an autonomic component to it. Does yours get worse at night? My daughter's is horribly painful, like someone is lighting her on fire every night. The pain has been so bad that it is extremely hard to keep her conscious. She takes a lot of pain meds to be able to even remotely cope with it. She is also in the process of being diagnosed with a Chiari malformation and craniocervical instability (most likely atlantoaxial instability). Those two can be causes of EM. Has anyone looked into Chiari for you?

My daughter had a one of those that you stick on your chest and she wore it for 12 days. It was supposed to be for two weeks, or as long as she could stand it. Truthfully, she could have stood it longer, but the tape was really irritating her skin. She has MCAD along with EDS and Dysautonomia. There was a button that you pressed every time you felt your heart do something that it shouldn't. She is young, 20, and doesn't have any children, lives at home, etc., so it was easier for her to write little explanations down (probably helps that she's a writer, too!). But, they did say that even if you don't write anything down (they do encourage you to write even a word or two), that it would show up on the monitor. So, if you don't get to write something down for every single time your heart does something wonky, I wouldn't worry about it. With these type (can't remember the name at the moment), when you take them off, you put them in a box and send it to the address on the instruction form. They download the information and send the report to your cardiologist. My daughter's came back normal and her cardio also stated that her heart rate runs high normally. For her, high 90's is about her low. When it goes lower, she feels bad. So we keep it about there and it's ok. She takes her propanolol so it doesn't jump into the 150's like it was, and that part of her POTS is doing well. We were dealing with a neurosurgeon recently and, for some odd reason, she didn't like the fact that my daughter took propanolol and it was her suggestion that she go off of it. Huh, since when did a neurosurgeon become and expert in all things POTS?! We said 'no thank you' and that it was one of the only pills that she takes that was actually working extremely effectively, so don't mess with it! Hang in there and I hope you feel better soon!

Hi ANCY! You know that my daughter's been dealing with catheters as of late, too, and she has had a Foley twice. They are super easy and not too uncomfortable. The problem is, though, that my daughter's body doesn't like anything foreign, so the catheter quickly irritated her, got plugged up, and had to be removed by day 2. Straight cathing seems to be pretty simple and it's less irritating than the 'leave in' kind. Doesn't plug up either. If you end up with a Foley for a short stint, my daughter had a lot of little suggestions that might help. Just DM me!

Don't know if this has anything to do with your son, but has he ever been checked for a Chiari malformation or craniocervical instability? Is he hypermobile, by chance? Like I said, don't know if he has any of these other symptoms, but the more research I do on Chiari and CCI, the more amazed I am. Might be worth listening to a talk by Dr. Fraser Henderson. He's the expert. There's some on YouTube and Vimeo.

Hi ANCY! So sorry to hear that you are feeling so bad again! What a rough year, huh! I do feel that people with dysautonomia handle pain differently, and just in the experience of my family, feel that they are harder to treat for pain. Heat works for my daughter - warm rice socks. A clean sock, fill with rice, stick in microwave - you get the picture. For my mom, though, ice. Never goes anywhere without her ice. Those sheets of fake ice cubes from Walgreens or CVS. Those are great because you can leave them in the sheet and they freeze flat or whatever way you shape them. Please take care, I'll keep praying!

This discussion couldn't have come at a more opportune time for my girls. My oldest has gotten really bad within the last 8 months or so, and now we are trying to get her in to see Dr. Gerald Grant at Stanford. Evidently he's the only one on the west coast that is capable of doing a Chiari/craniocervical instability surgery on someone with Ehler's Danlos. She had an upright MRI a couple of months ago. It wasn't standing, though, it was sitting. Do you have to do an actual standing one? My daughter would have passed out after the first couple of minutes. You have to stand so still. Even so with the seated one, they had to keep saying 'hold still'. She wasn't moving, but her body has been spasming involuntarily for quite some time now. The MRI is slightly blurry, but we are still going to get the CD to an expert even though the radiologist who read it said no Chiari. They are often missed. Have you looked into the videos and medical journal articles of Dr. Fraser Henderson? He's like doctor royalty to me. I think Dr. Grant was at one of the seminars that Dr. Henderson was at, so that gives me hope that, if we can get in to see him, he might be of the same mind set as Dr. Henderson. There is a huge dysautonomia component in those with Chiari and/or craniocervical instability. It certainly explains all of my daughter's symptoms. There are just so few doctors who understand it. The combination of Ehler's Danlos, dysautonomia, and Chiari/craniocervical instability is not something your general or specialized neurologist or neurosurgeon understands. We've just exhausted our 13th neurologist. Didn't spend a lot of time with him before he readily admitted that our local facility just didn't have enough specialized equipment to help her further, so instead of wasting our time with him, he would like to send us back to Stanford. I appreciated his honesty. You might do a little research on cervical medullary syndrome, also. Explains a lot of dizziness and vertigo as well as a host of other symptoms. Think you would be amazed, I was! My daughter has an assortment of 5 different cervical collars that she has tried. The one they are going to order for us next is the Miami J collar. It's a bit lit the basic Aspen, but has broader thoracic support. She tried the Minerva, but there was too much pressure put on the jaw. With EDS, you can't put that much pressure on something that moves. My daughter has a lot of trouble with TMJ and just subluxing of her jaw, so that wasn't a good fit for her. Take care and let me know what you find out!!

I am so sorry you are having to deal with all of this. It's hard enough to live with this disease and then for someone to accuse you of being lazy is disheartening. I hope today is a better day. I, too, live in CA and know that with spring coming and all the rain we've had, symptoms are worse. I have a lot of shortness of breath and there are two things that help me. One is my Flovent inhaler (250mg), and the other is Sudafed. I don't always take the Sudafed, but when it gets bad enough, it helps as an adjunct. I need to use my inhaler all the time as the spring pollen makes everything worse. I don't have asthma, think it's just the EDS. Have you been diagnosed with EDS yet? Sounds like some of your symptoms would fall in that category. Hope you can get a good network of doctors soon so that you can feel better. Hang in there!

My daughters use Sudafed a lot. It helps tremendously with their migraines and their vertigo. We have always treated their vertigo like a migraine because, for some reason, some of the things that we used for the migraines we had noticed helped with the vertigo. Sudafed being one of them. Years ago I learned that Sudafed was the key drug in bringing my migraines under control. I use Fioracet and one Sudafed tablet. If I don't used the Sudafed with it, the Fioracet doesn't work as well. Are you using the Sudafed for bp, migraines, vertigo, etc? Oddly enough, my oldest daughter was prescribed a low dose of Midodrine, but it made her real gloomy (not her at all), and it was actually triggering migraines. It also wasn't helping much with the blood pooling in her legs. We just went back to the Sudafed. The girls only use one tablet at a time, and it's the regular kind, not the PE. I've found that it doesn't work as well. Hope this helps!

I've been posting various symptoms and happenings regarding my 20-year-old daughter since last year and thought I would give you an update for those who have been following our horrible journey. She's had spasms, various involuntary movements, vertigo, debilitating pain, bladder issues, severe abdominal bloating, arms going to sleep, almost no circulation for days, then too much circulation (erythromelalgia), migraines, etc. all in addition to her Dysautonomia and EDS. We have long thought that this stemmed from a problem in her neck, but as different symptoms appeared, sometimes it would lead us to something different. Using the scientific method that we've all been taught in school, we applied it to her. Our hypothesis finally became theory the other night as she struggled to stay conscious amid sharp shooting pain from her neck all the way down her spine, a migraine, involuntary movements, muscle spasms, debilitating pain, arm that went limp and her body with almost no circulation. The only thing she wanted to do is to see her chiropractor. I know different people have different opinions on them, but ours is a real gem. She understands her dysautonomia as well as her hypermobility of her EDS. I told her we needed to take a conservative approach to treatment, so there were a lot of pressure points that she did on her as well as this little thumper thing that she does to the areas that we want to be super careful with. She was finally able to do one maneuver on her, that was better, then the second. All of a sudden she looked at my daughter and my daughter looked at her and they both said "wow" together. Our chiro asked her if she felt that, and she said oh yeah! That was your spinal cord being released, she said. Huh?! She said it was stuck somewhere in her upper cervical area and when she did the second maneuver, it released, we could hear all of her vertebrae just popping into place on their own, and with it all of my daughters symptoms (for the moment) were so much improved. It won't stay, as we have seen images from her MRIs that are beginning to indicate either Chiari and/or cervical instability. Need to have them done with flexion/extension this time so that someone can measure all of her angles and come up with a plan. Katybug has been helping me get into contact with some people regarding Chiari - thank you so much!!! Our pain doctor (so wonderful!) has walked us through to a colleague who is actually the head of neurosurgery. Saw her last week and she's referring us for some work up by one of her neurologists, but everything is moving at a snails pace, it seems anyway. Having a spinal cord that is that tight to trigger all of those symptoms is not good and we needed help months ago. We are so worried that there will be lasting damage to her while everyone is taking their time or as they say "following protocol". Oh, and if anyone knows of a good neurosurgeon with a solid knowledge of EDS and craniocervical instability in California, I'd love to have his/her name! Thanks all!!!

You mentioned chest, neck, jaw, shoulder, upper back pain - you might want to make sure that you don't have some sort of cervical instability or even Chiari. Do you know if you have Ehler's Danlos Syndrome? Just something you might want to check out.

KiminOrlando - we tried to get Domperidone from a GI doc at a University that we go to for treatment, but she said that it's getting really hard to get in the UK and so almost impossible to get in the US. She said she didn't want to prescribe that for my daughter if it's that difficult to get. Sure seems like a lot of people are still on it, though. She takes Reglan and that helps. Looneymom - Thanks for the suggestions. I've heard of Zoloft, but not Delpin, so I'll have to look that one up!\ TachyKathy - Thanks for the modafinil suggestion. I've not heard of that one either. One to look up!

Hi Sarah! Thanks for the thought! I did actually run this by our neurologist who had ordered the girls' whole exome sequencing and he said that there was no variation in the SCN9A gene. What we are finding out very recently, is that she most likely has craniocervical instability and/or Chiari malformation. She is most likely looking at surgery. She can hardly hold her head up and it's causing some really bad effects. Our pain doctor had a colleague who is a neurosurgeon and he walked us through to get an appointment with her on Wednesday. We think, anyway, that her nerves that come through the spinal canal are all being impinged upon, thus the huge variety of autonomic and other neurological problems. She's a real mess. Thanks for your thoughts, though!!

Yes, my daughter does have gastroparesis. It's not too bad right now, but she has episodes, like after a virus, when she has had to have an ng tube. We do take a Super B Complex vitamin, but, maybe that's not helping. I know that my mom gets B12 shots as she has pernicious anemia. My daughter has had trouble with brain fog ever since she was little. We homeschooled and I would work on flash cards with her. It would frustrate her to no end because she had to think of the answer quickly, so we quit doing that. But, she was doing high school Chemistry two years above her grade level and she got A's on most of her tests. You just had to give her enough time to think in. I need to have her B12 checked. Thanks for the idea!!

My youngest daughter is having such a hard time with brain fog that it interferes with just being able to carry on a normal conversation. She is so frustrated at not being able to think. Has anybody had any success with medication or such? Thanks for your help!

Hi StayatHomeMom! I'm a stay at home mom, too! You asked if anyone had ever had to come up with their own diagnosis and then have to convince the doctors to confirm it. Yes!! A thousand times, yes!! That's all I do. There is not one doctor out there that has ever diagnosed anything without my bringing it up first. It's all I do. I had a doctor tell me that I should concentrate on being a mom and let the doctors do the doctoring. If I did that, my daughters would be dead. That's sounds extreme, but it's true. This is how bad some of them are, I had to take my 20-year-old to Urgent Care this last Sunday, and the doctor on duty actually questioned my daughter's tethered spinal cord that she had when she was little. He said "well, how did you know it was a tethered spinal cord?" (insert badgering sarcasm here). I said "because she had spinal cord surgery at 3-1/2 to untether it!" (would like to have said "you idiot"!) That visit was full of badgering sarcasm and I will find a way to turn him in, but that being said, whether they are rude or just unknowing, you will most likely have to do what most of here have had to do for years and that is find the diagnosis first, and plead your case to the doctor. You won't meet a finer group of people here! My daughter is finally getting some help because of their knowledge and perseverance. Hang in there!!

My daughter's bp was getting high, so they are backing her off of her Florinef. Maybe the Florinef had done it's job for my daughter...she does eat a lot of salt, anyway. So we are trying to move it down slowly. I always find that "sneaking" off a medicine is much better than backing down in a hurry. Your body isn't as aware of it then. I would always ask your doctor.

I have never met Dr. Grubb or Beverly, but have heard good things about both. What I might say is that we have been to a major Autonomic doctor in CA and often see his PA. She's just as good as he is, in my book. Because they work so closely together they work kind of as one brain, you might say. She is far more accessible than he and, therefore, we get more help. They all have their limits, but if I were you, I would make the appointment with her and if she feels like there is something that he absolutely must see, she will find a way to have him meet up with you. Our PA has done this several times!

Is anyone familiar with sodium channel blockers? My daughter's PCP thinks that her sodium channels are remaining open too long and are thereby causing sympathetic hyperexcitability. He's been doing his homework. I know there are calcium channel blockers and potassium channel blockers, but is anyone familiar with the sodium channel blocker?

My youngest daughter (18) has been having pretty high blood pressure off and on (morning, mostly) for a few months. It was actually 160/100 hr 105 this morning, but it generally hovers around 140-150/low 100s. She also has been having worse sleep paralysis and has been getting more and more fatigued. Really tired, like she just sits down and falls asleep. I would say debilitating fatigue. She has chronic vertigo, EDS III, and, of course, dysautonomia. She also, at times, has an irregular heart beat. It beats irratically. I know with hyper-POTS there's high blood pressure and high heart rate. Is that correct? It's late, I might have that wrong. Any of this sound familiar to anyone?

It has been recommended for my daughter to get one of these. She has Erythromelalgia along with EDS and Dysautonomia and has been to the ER 20 times in the last 6 months. Her veins are not good and she has one left for the nurses and lab techs to administer medication and draw blood. Are your veins like that too? If you wouldn't mind sharing, how long was the procedure to implant this? I'm so sorry you are sore and uncomfortable. Procedures like that can be uncomfortable. I hope this works well for you and that things settle down quickly.

I'm sorry, but I do not have any suggestions, but I agree with you wholeheartedly!! The winter has really knocked the socks off my girls, and we live in California! Change of seasons has always been horrible for them. Summer to fall and winter to spring are the hardest, but lately we've had a cold snap. All of you from the Midwest and East, quit laughing! Yes, it's been cold, down in the 20's at night. We aren't used to cold like that, so, therefore, it takes a real toll on the body. Dry, too. I've been putting water on the stove with some peppermint oil drops in it to help with some humidity. Vertigo is worse, POTS is worse, and my oldest has erythromelalgia (blood vessels sporadically dilate too much) and we are looking at yet another trip to the ER to calm the pain. Hang in there, spring will be here before you know it! (At least that's what I keep telling myself!)

Thanks, dancer!! Spoons and hugs!!

So happy you made it home!!! What a blessing!!! Just in time to enjoy Christmas!!!