DizzyGirls

Hi Kim, Just got home from our hematologist. She's taken us under wing as no one else wants to take my daughter's case. One of the labs she ran (there were a ton!) was for cortisol and it came back low, as did something called ACTH (has to do with cortisol or at least endocrine, also). So, we got a referral to an endocrinologist! Our doctor had run so many rheumatological labs that we've pretty much decided that it's not that. That's good, though. We've eliminated one aspect. My mom is in the process of testing with an endocrinologist. Her labs showed that her pituitary wasn't working at all or just part way. Anyway, she had a cortisol stimulating test 10 days ago. Our doctor (who's part of the same practice as my mom's) mentioned that test also. My mom and my daughter are like two peas in a pod, unfortunately. Very similar medical issues. I love our hematologist because she listens and believes us! I've described all my daughter's symptoms to so many doctors, but they just seem to let most of it go in one ear and out the other, especially when I kept saying that I know her adrenaline has something to do with this. But, she comes in and attacks a problem. We think my other daughter has adrenal fatigue, maybe not a storm at this point, but after you wrote, I started looking all this up again. She's got so many signs that I'm going to try to get her in to our hematologist and maybe then she could refer her to the endocrinologist. Want to head this off so that I'm dealing with two! Thanks so much for remembering us, it means so much!

Hi Kim! Thank you so much for remembering this post! No, nothing has been resolved yet. We've been from our home town doctors clear to Stanford and nobody can figure out what is going on. She has a combination of muscle, tendon, and blood vessel spasms that hit mostly at night, along with severe nerve pain. The nerve pain is caused by the blood vessel spasms. It causes erythromelalgia where the blood vessels dilate too much, starting in her hands and bottoms of her feet, but quickly spreading systemically. She also has Reynaud's, as they not only dilate too much, but they contract too much, therefore spasms. When the pain is worse, the vertigo is worse. The nerve pain will be so bad at times that she loses consciousness. It's horrible. So far, 17 trips to the ER since June. Thank you for the suggestion! Sorry for the unload, it's just so frustrating. Was it some place online that you read about adrenal storms? Could you send me the link? Thank you!!

ANCY, So, so sorry to hear that you are so very ill. You will be in my prayers. Hang in there, sweetie! Sending you a short DM.

Not sure what functional neurology treatment is, but we have a fantastic chiropractor who we couldn't live without. We also use cold laser or low level laser therapy to ease muscle stiffness and reduce inflammation. Our chiro is board certified in sports medicine and she uses it on sports injuries also. We've seen some improvement. There isn't one magic bullet in treating Dysautonomia or Ehler's Danlos Syndrome (dealing with that, too). So, we have to take what we can and put it all together. We don't just rely on these treatments, medications play a big part in regulating symptoms, as we also couldn't live without our Florinef and Propanolol along with other meds for other issues.

So glad to hear that someone listened! Hey, there are doctors out there like that. I hope you get some improvement in your symptoms. It's a long haul, that's for sure! My oldest daughter takes Thermotabs, but my youngest doesn't need to add salt - she eats enough in her meals (that's an understatement!) The salt works. My oldest likes the electrolyte water and they both like Vitamin Water. Sometimes the Vitamin Water is good because it has some sugar AND all the electrolytes. Be patient, it is a ton of trial and error. Mostly error, until you get the right one. Hope you feel better soon!

I am so very thankful for all of you and your support, and wealth of knowledge!! So grateful to get to know people who understand and are so willing to help! May you all have a blessed Thanksgiving!! Gentle hugs!!!

Yes and no. She was recently diagnosed with Erythromelalgia (Man on Fire disease). She is experiencing tremendous nerve pain, the worst of it occurring at rest or at night. I STILL think she has Lupus or Sjogren's or maybe Scleroderma as with Scleroderma the Erythromelalgia is prevelant. We are currently working with a hematologist and she is doing her best. Sending my daughter to a pain clinic, and also waiting for labs to come back for high GAD levels. This would be indicative of an autoimmune neuromuscular condition called Stiff Person Syndrome. It's extremely rare and very difficult to diagnose (unless you have the blood test done and it comes out high, then, guess that would be easy!). My daughter is not only experiencing the Erythromelalgia flares - dilation of blood vessels in hands and feet causing mild to extreme nerve pain - and also severe muscle spasms that render her in a contracture/dystonic posture. Don't know if we are dealing with one or two things. Or if one is causing the other, etc.... If the GAD levels come back high, the hematologist will put in orders for IVIG treatments, if it doesn't, she won't (would be tough to get insurance to ok it). She also has EDS-H, MCAD, and Dysautonomia. She is on low dose Prednisone 7.5mg (it helps some), and Plaquenil. Convinced her PCP to give us a trial run on each, as ANA is positive, and younger daughter had some success with Plaquenil a couple of years ago. The Prednisone, I think, has been instrumental in reducing inflammation that was behind her optic nerves in both eyes and in her optic discs. I would say that would be a good reason to stay on it for a bit! Thank you for asking about my daughter! Any thoughts? I'm all ears!

Great to have you here! Think you will find that there is an immense amount of knowledge within this group! They are like family! You never have to wonder if they are believing you or not. They been there, done that, and back! So glad you found some answers. It does take an inordinate amount of time to be diagnosed, doesn't it? My daughters are always telling me that I expect too much from the doctors. Well, I figured that if they went to school that long, shouldn't they know some of this stuff?? I mean, I would imagine some of their mothers would be awfully disappointed if they knew 5hey went to school for that long and were missing all of this! Well, anyway, welcome!

So sorry you had to go to the hospital! We are well acquainted with it too! No fun, that's for sure! When my daughter is in a situation where there is too much stimuli and her POTS is going crazy, her legs just give out from underneath her. We were at a wedding recently, the music was loud, full of people, hot, and she had been sitting for a long time, when she went to stand up, her legs buckled underneath her! This happened 3 times before they were able to hold her up. Sometimes she just passes out. For this instance, though, it was just the legs. I always remind her to make sure that her bottom half is ready to follow her top half! Take care and hope you feel better soon!

You are both talking about classic signs of erythromelalgia (EM) or "Man on Fire" disease. It's a neurovascular disorder that primarily affects the hands and the soles of the feet. It is due to the blood vessels dilating too much and letting too much blood in at once - hence, the reason it happens after a shower (big trigger). It also primarily attacks at rest or at night. There is a website that a doctor started that talks about this in depth (he had it for years and just recently passed away). He attributes the rest/night trigger as the Sympathetic Nervous System calming down and the Parasympathetic taking over. That transition somehow triggers this whole thing. I know this because my 20-year-old daughter was just diagnosed with it. We have been dealing with this for months. We go through several of those blue ice packs a night. As soon as I turn down the lights in the living room, is when it begins. Last night she almost blacked out because the pain was so severe. It starts in her hands and feet and within minutes it is systemic - affecting the nerves internally and on her direct skin. Her skin gets very hot and many times you cannot touch her. We have been to the ER 13 times since June. My daughter also has something else that happens with the EM. When her body experiences this much pain, it causes her muscles to spasm severely and sometimes they freeze her in a contracture that is only undone by ER meds. A lot of times it closes off her airways, stomach, bladder, intestines, etc. It is extremely painful. Looking into Stiff Person Syndrome. A very rare neuromuscular autoimmune disorder. As if EDS and Dysautonomia wasn't enough! Just let me know if you need more info, I've got it!

My daughter is having a hard time with her adrenaline levels, too, but one thing that we have added to her benzos is melatonin. It sounds innocuous, I know, but when you add it as an adjunct, it helps. If I rattled off everything she takes to make her body work, most people would sleep for a week! She doesn't! Just thinking out loud... Hope you feel better soon!

Do you have mast cell issues? Think I heard that people with mast cell activation disorder shouldn't/can't take beta blockers. Just a thought. Some of your symptoms sound like a mast cell flare.

I loved the Thanksgiving reference!! That was funny! I told my daughter she would never be in charge of Thanksgiving dinner! We would all need a gallon of water! Thanks for the fun and helpful facts!

Thanks Corina! Wish the fix was as easy as taking two aspirin. It works some for the burning sensation, but doesn't do much for any associated neuropathic pain. Fortunately, though, her hematologist called today and is prescribing a compounded cream to put on her hands and feet. Praying this works! Thanks for all of your help on this site!!!

docradmd is right. I started a post a couple of days ago looking for you! My daughter was just diagnosed with erythromelalgia. Hers is really intense. She can't take the aspirin, makes her stomach sound like an active lava pool. Found some information by a doctor that recently passed away (Dr. Cohen), but he's done a tremendous amount of research on EM (as it's referred to). I thought it was an adrenaline thing, too, and maybe it is, but he explained it this way. It's the time when the sympathetic nervous system is settling down and the parasympathetic is taking over. That's sort of what allows the EM to kick in. For my daughter, anyway. When she relaxes in the evening is when all **** breaks loose. All her ER visits are at night. Hope this helps. It seems to be a combo of neuro, vascular, and autonomic.

Yep, daughter almost passed out on the toilet one day. PCP said it was a vasovagal response.

Thank you for bringing awareness to this very complex condition! I am so proud of my girls, my Dysautonomia Warriors! They truly inspire me and drive me to accomplish much. I have to keep going for them, because if I don't, who will? I am so thankful for all of you and all of your support. It has been such a trying year, and, I have to say, I don't know where my sanity would be without all of you wonderful people!!!

My daughter has been diagnosed with a rare disorder called Erythromelalgia. To the person with the post a few weeks back on burning ears, you might want to check this out, as it is one of the symptoms. My daughter's hands and feet turn bright red and then the burning starts. It feels like fire is pumping through her veins. No one has been able to diagnose her until yesterday. She's been to 9 different neurologists at some of the country's finest Universities and nobody could figure out what was going on. She had an appointment with her primary care doctor yesterday and he asked if her hands turn red and we said yes. What about her feet? Yes. He said there is something called Erythromelalgia. It causes the blood vessels in the hands to dilate open causing spasms. It is extremely painful and very hard to treat. One strange test, though, is a response to aspirin. You remember aspirin? It's only 1.29 at Walgreens for 100 tablets! Thankfully this was a cheap test. If the burning sensation is markedly diminished after the aspirin, then it's a pretty clear answer that this is it. My daughter said it helped the pain some, but then she clarified that the burning was a lot better. Huh, who knew?! Oddly enough, there is an autonomic component to this. I swore up and down to her PCP that this seems to only happen at night. It's strange. Looking all this up when we got home, there was an article by a doctor that had lived with it for 10 years and explained that it had to do with the time of the day where the sympathetic nervous system settles down and the parasympathetic takes over. Of course it's autonomic!!! What ever made me think it wasn't!! Is there no end to Dysautonomia?? There is a fairly large amount of people who have small fiber neuropathy with this also. I think that the EM (as it's abbreviated in the literature) is a trigger for the small fiber neuropathy, not the other way around. But, I'm still checking into that. Well, something else to add to the Dysautonomia list!

So glad you found something that works!! I'm going to remember that name and present that to my mom for her pain doctor!

Welcome to the forum!! In this place you will find an abundance of caring and extremely knowledgeable people! As to your question, my daughter has been experiencing this when her adrenaline surges, also. She's suffering from severe neuropathy (guessing small fiber neuropathy) and that also seems to coordinate with her adrenaline. In the evening when her adrenaline is trying to calm down, her neuropathy kicks into high gear. She can be writhing in pain on the couch at night, we'll need to go to the ER because the nerve pain is so intense that her body is rendered paralyzed and this also affects her breathing. By the time the doc comes in the room, she is usually somewhat better because her adrenaline has kicked in. It is the strangest thing! I hope you find some answers!

Daughters diagnosed POTS almost a year ago, signs, though, since 2014. BUT, lots of EDS III troubles all their lives.

Hi momandmore (love the user name!). My daughter and I had just now noticed the itching in correlation to her eating. I seriously do not know why we never noticed that before, but my daughter also has horrible GI pain and it's just getting worse. Stomach bloated and cramped so bad that we've had to go to the ER numerous times. They are getting to know us there. Her fatigue is off-the-charts, we were spearheaded into a headache clinic at the University nearest to us within a matter of weeks and their next appointment was in January because her migraines are so daily and she has inflammation of her optic nerves and blurring of her optic disks (one side worse than the other). She also has horrible neuropathy. Pain so bad that she hyperventilates. Guess it's her body's way of trying to deal with it. She'll grit her teeth and furrow her brow, can't have anything touching her. Starts in her hands and feet, but then becomes so intense that it paralyzes her body until we get enough pain meds in to calm it down. I am so, so glad you wrote, because now I'm even more leaning toward the fact that it's Celiac. I've read so much lately that I think I've gotten myself confused. I know that Celiac is autoimmune, but does it cause the itching like I described? She's even gone to the hospital with her throat half closed off during all this. Because this started with strange muscle movements and dystonia, we just thought it was part of that. But, looking back, when her throat closed off, that was probably verging on anaphylaxis. I've been reading a blog of a woman who is an MD, a mom, and she has Celiac and MCAD. I'm wondering if we are looking at both. Katie had also mentioned this. Thank you both! You've definitely helped put the pieces together, by far better than any doctor we've seen!!

So, we did a test this morning to see what would happen. My daughter ate a big cinnamon roll for breakfast ( I know, not healthy, but darn good!). About 20 minutes after eating, her pain got real bad. After about 2 hours after eating, she started to itch like crazy and her vision got blurry. Come to find out, she said her vision has been doing this along with the itching. I didn't know that. She took two Benadryl and things calmed down a bit and vision improved. Not sure how the timeline fits in, but we know that it was something in the cinnamon roll that did this. Off to do some more research....

When you say that you might be blowing it out of proportion and if you tried harder, things would be better, tells me that you are trying very hard and the harder you try, the worse you are feeling. I have a daughter like you. Tried college for two days (1 class) and ended up in the ER. That's how hard she tried, she put herself in the hospital. Before that happens to you, approach your professors and ask them for 'a minute of their time to discuss some health challenges you are facing'. Express your desire to keep up in class, but that sometimes, physically, you are not able. Could they help you with any accommodations, some extra time allowances, etc.(you might need to be specific as to what you might need), as sometimes your body doesn't like to keep up with your mind! You can do it! Be brave and know that they are human too and you never know who is in their family that might have health challenges, too!

We are with you on this. You keep putting one foot in front of the other and only take the days as they come (sometimes I have to take moments). If you take on the rest of the year at a glance, it's too overwhelming. We have been happy to say that we have made it about a week and a half without an ER trip. For that I am thankful. May daughter has been suffering terribly this whole year. She's only 20. She's had health problems for most of her life, but the last year has been off-the-charts! It is getting very wearing on her (and the rest of the family), even though she tries to stay positive. I know how hard it is to have a baby or two and not be well. Please hang in there and know that you are not alone. Even though this is online, we are all real people with real struggles and we are here to help. Wish we could all take turns babysitting so that you could take a nap, but know how hard that is amongst the neuropathy (daughter has that severely now, too). Do you have some family or friends that are close that could make a meal for you or watch the baby while you slept? Hang in there! Sending gentle hugs and lots of spoons! p.s. We are trying to get my daughter tested for Celiac Disease. I only mention this as you have neuropathy and that is one of the symptoms. It is a simple blood test that should have been done on my daughter years ago. Why until now did they not think of this, I'll never know. I wouldn't want anyone to go as long as she has and at least it not be brought to attention.