DizzyGirls Posted July 9, 2016 Report Share Posted July 9, 2016 Another night at the ER. My daughter seized up, her whole body in a tight spasm, not letting go. Keeping it short, it's 4:24 a.m. Labs were good, as usual. Finally, getting home, my daughter put two and two together. She is pretty sure these are adrenaline crashes. I'll give the long story later.... How do you control these things?? How do you keep your body from going into this state?? Had her cortisol bloodwork yesterday morning as well as complete thyroid panel. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted July 9, 2016 Report Share Posted July 9, 2016 Oh I am so sorry. I know she'd had an EEG, but have any of the doctors mentioned long tern in patient monitoring to the neuro unit? These events could be captured on video and monitors. They could also draw specific types of labs as they're occurring. I'll keep thinking.. xoxo Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 9, 2016 Report Share Posted July 9, 2016 The main treatment for adrenal fatigue is corticosteroids (hydrocortisone or prednisone. ) There are some alternative medicine treatments but I don't know how successful anyone has been on that note. I used to be up and down the adrenaline roller coaster. Now, I'm mainly down and have to take steroids to mimic a circadian rhythm or I'm toast. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted July 9, 2016 Report Share Posted July 9, 2016 Just curious because I'm not familiar with this area - How do you know if it's adrenal fatigue (or something else) if labs are normal? Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 9, 2016 Report Share Posted July 9, 2016 My cortisol used to run at the high end or just a point or two over the high end of the scale. Now it runs at the low end or just a point t or two below it. Not what any doctor would diagnose as Addison's. But, luckily my endocrinologist is familiar with POTS and the fact that many of us end up with adrenal fatigue. He also is someone who believes that there is an art as well as a science to medicine and that you have to treat the whole patient, not just the lab results. So, in that, respect, I think I'm lucky because I'm disabled completely without the steroids. Quote Link to comment Share on other sites More sharing options...
toomanyproblems Posted July 9, 2016 Report Share Posted July 9, 2016 5 hours ago, DizzyGirls said: Another night at the ER. My daughter seized up, her whole body in a tight spasm, not letting go. Keeping it short, it's 4:24 a.m. Labs were good, as usual. Finally, getting home, my daughter put two and two together. She is pretty sure these are adrenaline crashes. I'll give the long story later.... How do you control these things?? How do you keep your body from going into this state?? Had her cortisol bloodwork yesterday morning as well as complete thyroid panel. I'm unfortunately knowledgeable about adrenal problems from both a personal and academic standpoint. I don't think you can try to formulate a plan until you have the labs from the thyroid and cortisol levels back. Please update us when you get them! I hope you daughter is feeling better! Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted July 9, 2016 Author Report Share Posted July 9, 2016 Sarah, Katie, toomanyproblems! Thank you so much for all of your help and insight! Sarah, the way we came to think it might be adrenal fatigue is that this has been happening at the same time every evening - 8:30. It's when she lays down in her room to rest for a bit before watching a little TV before bed. The week previous to 4th of July she had been looking forward to a BBQ that we were having with a few close friends and family. Nothing major, one would think. But, anytime she looks forward to even something simple, her body gets charged up and she can't turn down the adrenaline. She's been pushing herself for the last few months to attend a couple of special parties (at our church) for her friends. The more she pushes, the worse it gets...so in that respect, my daughter thought it made sense. Got some basic labs back...basic thyroid is at the top of the high end, no cortisol levels yet. Should be Monday on that. She seems to me that this might be hyperPOTS? She's awake and doing ok this morning. Lots of valium at the ER. Feels like she's been run over by a semi, though. Will write more later! Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 9, 2016 Report Share Posted July 9, 2016 Have you thought of having her evaluated by a neuro that specializes in neuromuscular disorders? Again, it's a rare subspecialty but might be worth it to rule out anything more insidious. Quote Link to comment Share on other sites More sharing options...
yogini Posted July 10, 2016 Report Share Posted July 10, 2016 Yes, curious to know -- what is an "adrenaline crash"? Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted July 10, 2016 Author Report Share Posted July 10, 2016 Hi yogini - adrenaline crash is something like maybe a caffeine crash. That's as complex as I get today. I'm exhausted and can't think well, so that as good as I come up with. It's a bit more complicated than that (try Google if you need a deeper explanation), but would think my daughter might have hyper-POTS. Not sure, it's all starting to blur together at this moment, but her symptoms kick in when her body is trying to settle down. When it isn't charged up and trying to get through the day, and it's trying to relax, maybe feeling that it doesn't have to put out as much adrenaline, that's when these super spasms start. She started cramping up last night around 8:00p.m. again. Thigh muscle was rock hard so I hurried and gave her dose of diazepam early and it started helping. That worked for a bit, thankfully, because it wasn't time for her muscle relaxer yet. Her arm started trying to seize up also, but it was finally time for some of her other meds and it helped relax it. She just kept moving her arms and legs in some small way, seems to keep them from taking over her whole body. Finally was able to go to sleep. Bless her heart, she slept all night. Quote Link to comment Share on other sites More sharing options...
smiles Posted July 12, 2016 Report Share Posted July 12, 2016 At first I didn't have anything to add until I thought about the timing of her muscle/cramping issues. I had issues with my legs (and once in a while my arms) literally jumping and moving when I'd lay down to get ready to sleep. I had no pre sensation. They just moved. My muscles would tighten and move, then release. I'd had seizure type issues in the past but these new muscle jumping things were not seizures. They finally diagnosed me with restless leg syndrome even though I didn't fit into the symptoms you hear about on tv. Her symptoms are not the same but the timing sure is. I went through a series of trying meds (after trying every herb, homeopathic remedy,... I could find) and finally ropinerol (I think brand name is requip) stopped them and I finally got some sleep. You may be able to see if it is an issue similar to that by having her exercise the muscles that seem affected the most at the first onset of the muscle issue. For instance if it was my right leg that was starting to move I could exercise just that leg and it would relieve the symptoms until I stopped moving it. If I tired it enough, sometimes the discomfort and the spasms would stop altogether. This may be totally unrelated but it's my feeble atempt to help in some way. Quote Link to comment Share on other sites More sharing options...
Kaitlyn Posted July 12, 2016 Report Share Posted July 12, 2016 Dizzygirls- I know I have said it before but y'all need a break! Understatement! Sorry you're going through this. I can hear the exhaustion coming through in your posts. Adrenal fatigue/crash ... one natural thing I know of to help with adrenal health is Ashwaganda. My cortisol is always on the way low end. Quite a few years back before I was diagnosed I saw a chiro and he felt I had adrenal fatigue. Amazing how spot on he was - though just a piece of the puzzle. Anyway, he made up a liquid for me to drink. I don't remember what was all in it but I know Ashwaganda for sure. If you google there is a lot of info out there for natural supplements to support adrenals. I hope she and you get some relief soon! Sending strength and big hugs Kaitlyn Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted July 13, 2016 Author Report Share Posted July 13, 2016 Smiles - thank you for your thoughts...in no way feeble, though! You are right, when she keeps moving, the spasms don't take over. It's exhausting for her, but it is working. Talked to Stanford yesterday and they are squeezing her in next week, which is amazing because they have a year waiting list for a follow up appointment! Jumping muscles was how hers first started. The Baclofen calmed them down and it seemed to be getting better until after our BBQ and the bottom just dropped out. Have you ever heard of Segawa Syndrome? I've been looking into that. Also, Dopa Responsive Dystonia. It has to do with your dopamine levels, which I see mentioned quite often in regard to Dysautonomia. Thank you for the ropineral suggestion! Kaitlyn - Thank you so much for your sweet thoughts! Yes, life has taken on new challenges... Thank you for the Ashwaganda suggestion, I'll do some looking into that one. Just got her cortisol test results back this morning and it was 17.1. Seems it is sort of on the high end of normal (the high was 22). Not sure how that fits into this, but I do know one thing, when her body tries to be calm is when it kicks in. She woke up feeling worse this morning - but not too bad yesterday. Funny thing is, yesterday was a very stressful day. Phone calls from 8:00 a.m. until later into the evening. Doctors, labs, other calls, etc. Just trying to round up information for the phone appt. with Stanford. Also, the possibility of having to be admitted into the hospital for this. It's enough to get anybody's adrenaline up. When she layed down to rest yesterday evening, she could tell they weren't trying to tighten up. Today her adrenaline is coming down from yesterday and things are trying to cramp up some and it's not even evening yet. Go figure. Quote Link to comment Share on other sites More sharing options...
sideofsalt Posted July 30, 2016 Report Share Posted July 30, 2016 Hi Dizzygirls, did you mention in a previous post that your daughter takes phenergan? If she does on regular basis, does she pair it with Benadryl? I ask because my headache dr. said that if I take phenergan, I have to take benadryl with it or I may get muscle seizure-type side effects (I forget the pathways involved at the moment). My dr. said that a patient ended up in the ER with muscle seizing up symptoms. I could be way off but thought I would mention it. I hope your daughter gets relief soon. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted July 31, 2016 Author Report Share Posted July 31, 2016 Sounds like what my daughter's doctor says happens sometimes with some meds, think he called it "extrapyramidal effects". But, to answer your question, she does take Benedryl. It's not always at the exact same moment that she takes the phenergan, but she takes a healthy amount, so it's always in her blood stream. She actually got a shot of phenergan at the ER one night and had those intense muscle movements, not dystonia, but she couldn't hold still. The nurse had to come back and give her a big shot of Benedryl. Worked wonders! Thank you so much for thinking of her! I just started a new post regarding her symptoms. They think she might have lupus based on labs and symptoms. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted December 14, 2016 Report Share Posted December 14, 2016 Something that I just ran across and made me think of this post is called adrenal storm. I don't know where you are with treatment or if this was mentioned, but I thought it was strange that I just read this post today and learned about adrenal storms a few hours later. I hope your problem was already solved though. Kim Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted December 14, 2016 Author Report Share Posted December 14, 2016 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!! Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted December 14, 2016 Report Share Posted December 14, 2016 Hi Dizzy, Oddly enough, it was a tv show that I was watching and the character had an adrenal storm. The way they depicted it reminded me of this and I looked it up online. It probably isn't the only thing going on, but may be a component of it. It doesn't hurt to ask the doctors. My sneaky technique is to ask, "How or why did you rule out adrenal storm?" That gets them thinking about symptoms and tests instead of just dismissing me. I don't know if we have stumbled upon anything or not, but I hope they figure it out soon. Those attacks sound miserable and exhausting. Keep us posted. Kim Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted December 15, 2016 Author Report Share Posted December 15, 2016 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! Quote Link to comment Share on other sites More sharing options...
dancer65 Posted December 15, 2016 Report Share Posted December 15, 2016 Just sending my best wishes to you all . Pleased you found someone interested in her case . Hugs for a better time x Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted December 15, 2016 Author Report Share Posted December 15, 2016 Thanks, dancer!! Spoons and hugs!! Quote Link to comment Share on other sites More sharing options...
Nemesis Posted December 15, 2016 Report Share Posted December 15, 2016 Wish you all well being, healthy life Best wishes Quote Link to comment Share on other sites More sharing options...
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