DizzyGirls

We tried Niagen a NAD+ booster, and we are using a cold laser (low level light therapy).  Not sure how well any of them work, but I always feel like we have to keep trying.  We did finally quit the Niagen, as it is expensive and we weren't seeing any real, earth shattering benefits.  The laser, however, we do still use and it helps if you have trouble with GI motility and use it in on the head and shoulder areas to loosen stiff muscles.  Not sure it's given them any boost in mitochondria, though.  But, there is research out there (spoke with a professor/research scientist from the University of Sydney) who was involved with a study regarding laser therapy and boosting mitochondria function. 

I haven't heard of the treatment you are doing...just make sure it's safe.  I hope you have great success with it!

No.  No right meds yet.  Florinef at 0.1mg daily is a huge help, but other than that her life is a nightmare right now.

My daughter tried propanolol for a few weeks.  It did lower her heart rate, which we thought was good, but what we were missing in the beginning was the fact that when she stood up, her bp dropped dramatically as well as keeping the heart rate lower.  She doesn't usually have fluctuations to speak of in her bp, it's only the hr.  We also thought it was making her headaches worse.  Also couldn't take midodrine because of the headache issue, but that did give her more energy. 

Thanks Bigskyfam and Ares22!  Spent yet another night in the hospital, no sleep, very little help.  This is a University hospital no less.  Couple of referrals, an appointment in January...are you serious??  Trying to get in to a rheumatologist.  It seems almost impossible.  We live in a very busy city with what, one would think, a lot of options.  But, there seems to be a dramatic shortage of rheumatologists.  At least ones that would even begin to have a clue as to how to treat someone with dysautonomia, EDS, Lupus, etc. 

Her biggest and most restricting symptom is the vertigo.  It's gotten bad.  Also, she's had a migraine for over a week.  Her vertigo and migraines seem to go hand in hand.  Her migraine meds are hardly touching it.  She also has these muscle/tendon/blood vessel spasms.  The muscles grab around her waist and just squeeze, did that to her stomach.  You could hear it growling and see her abs so tight.  Also affects her big scalene muscle around the back of the neck to the front.  It chokes her throat so it's hard to breathe.  The blood vessel spasms act like extremely severe Reynaud's syndrome.  Tendons too.  Like a puppet master is pulling different strings to make her hands and fingers tighten up so much that they feel like they are going to break. 

Hoping and praying to make it through this night.  Thanks for your help. 

Ares22, what exactly are IVIG treatments?  I've seen it on here, just don't know what they are... You kids are so brave!

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. 

My daughter has been going through it.  We are counting the hours until Monday morning and I can start calling some doctors to put some pressure on them to see her urgently.  She had labs done last week and, according to the results and her symptoms, could easily have lupus.  I would suspect this is an intense flare she is going through.  Also due for her depo shot and has had horrible vertigo that we think is part of a continual migraine that has lasted almost a week.  Think her depo shot might alleviate the migraines some, but in a massive search for a rheum. within our insurance plan.  Any help dealing with EDS, Dysautonomia, AND lupus would be greatly appreciated!

Well, just realized this was an old post, but, hey, how are you?? 

Hi dizzyallie!

So great to see you on here!  I was just thinking about you this morning!!!  I'm sorry, I don't know about the itching with the b12, just wanted to say it was good to see you on here!  Hope you feel better soon!

So sorry that your daughter is suffering!  I have daughters, also, and we are still figuring out what works, what doesn't and how their bp/hr responds to things.  Just brainstorming out loud, but has your daughter, by chance, tried the Florinef and the Midodrine together.  One medication might react one way by itself, but differently if put with another (a pediatric anesthesiologist told me that one time).  My oldest has trouble with very low bp and high hr.  Her neurologist just put her on propanolol (a beta blocker) to bring her heart rate down, so we have had to adjust her Florinef to balance the two, also trying to settle her sympathetic response.  Still working on that...  Her hr runs about 105 sitting down, but when she stands up, it jumps to about 130.  He's one of the country's best autonomic neurologists and he said that having a resting hr of 105 was too high.  Makes the heart work to hard to get the blood where it needs to go.  My point being, your daughter's hr doesn't have to be sky high to benefit from treatment.  That's probably why she's so tired,  I'm sure that's why my daughter is so tired.  Her body is working so hard. 

She tried midodrine a couple of months ago and it helped get her up and around in the morning, but she had to stop it because it was increasing her migraines too much.  It didn't make her sleepy, actually had the more normal affect of giving her some energy.  But, that doesn't help if you have a migraine every time you turn around. 

I hope your daughter finds some relief soon.  As always, keep well hyrdrated, lots of electrolyte water, salt... I'm sure you know the drill.

My daughter is taking enteric coated biotin.  What I read about biotin is that if you take it on an empty stomach, and the enteric coated kind which dissolves in your intestines, it works as an anti-inflammatory.  If you take biotin with food, it acts as a digestive enzyme.  Hope this helps you!

My girls were taking a supplement called Niagen, a NAD+ booster about a year ago.  Thought it might help their mitochondria production.  It didn't help them, but doesn't mean it doesn't work for some people.  It was recommended to me by a research scientist from the University of Sydney.  He was doing some cutting edge research on mitochondrial disorders.

So, here's an update to my daughter's situation thus far.  We made it down to Stanford and met with the PA and the neurologist. The thought was one of her medications was the culprit.  But, I know that she's never had any trouble in all the years she has taken it, so, to me it didn't make sense.  It's like that old saying, if it looks like a horse and acts like a horse, it's a horse...well, sometimes it's a zebra.  My daughter has been paying close attention to her body and how it is reacting, and she has kept telling me that her adrenaline feels like it's pumping too much and these spasms, tremors, dystonia (call it what you will) was always worse when this was happening and after the last event, her body had had enough.   A couple of different doctors have commented on her sympathetic nervous system seems to be very overactive and that she is so hypersensitive to everything.  Even just another person being in the room makes her adrenaline surge.  (surprised her heart rate isn't higher than it is!)  So, back to the dr. appt, they put her on propanolol to help control her heart rate and adrenaline surges.  It seems to be helping, but it's making her bp drop too much, so will have to add a bit more florinef (what the dr. said would happen) .  I'm guessing that her POTS is the hyperadrenergic form?  She hasn't had all the testing for that type specifically, but her symptoms seem to fit.  She's always had trouble controlling her adrenaline.  Also, her neck seems to be somewhat controlling some of these spasms, too.  Also, the dystonia has morphed into tingling and what seems to be inflammation of her connective tissues around her tendons.  Her wrist hurts and is swollen and there is crepitus around the tissues.  Also, her blood vessels are spasming too, it's giving her severe Reynaud's type symptoms.  (Hands and feet).  She is supposed to be tapering off some of her meds, but this is going to be really hard if they don't find something to help control her symptoms.  The vertigo is still a very real factor, also.  Guess I'll try to settle down and wait for the propanolol to do it's thing.  As you can see, I'm a bit scattered.  Trying to figure out something that I don't have medical training to figure out, but I'm going to keep trying.  Any thoughts??

Thanks Katybug and dancer 65!  I'll definitely read the link, tons of information!  The botox, too.  I have ready that quite a few people have success with that.  I'll give everybody an update after we go to Stanford the early part of this week.  Just trying to maintain until we go.  The two things that she has noticed in all this is that fatigue and adrenaline affect it.  So, we'll see....

Has anyone developed dystonia rather suddenly?  Or at all?  Daughter is still suffering and tendons are pulling so tight it's just moving her bones around. It gets worse in the evening, but tendons are staying tight all the time.

There is mitochondrial testing that isn't as expensive as whole exome sequencing.  We did opt for the whole exome sequencing, but if you are looking for mito only, I would go that route.  Just my personal opinion.  Also, my daughter's neurologist didn't want to do the muscle biopsy.  Said it might be too much for their bodies at the time.

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.

So sorry for the location challenge.  There are pros and cons to everything, it seems.  We are city people, but haven't gotten the chance to take a whole lot of advantage of it because of their health.  We are actually having to go back to Stanford next week, and as ill as my daughter is, she's actually looking forward to it because it's a trip.  The Silicon Valley can be interesting at times.  Hope you can work out a happy medium with the school.  Best wishes to you!

Hi there!

I am happy to say that I've graduated both of my daughters, teaching them from the beginning to the end.  It can be done, and I also know about being the only one left at home to do school.  My oldest had graduated, and my youngest was still doing school a year and half later.  It was a little hard for her, as they had always been together doing their homework and such.  But, I do know that she would have never been able to make it at a brick and mortar school with EDS, Dysautonomia (POTS).  Each day is too unpredictable, public school would not have been an ideal place for a kid with a feeding tube (she's had 2, and, thankfully, they are gone now).  I would suggest homeschool that has a support group.  We had "class day" where the kids got together once a week for a class.  It allows them to be with other kids, gives mom a break, but if he wasn't able to go, no problem.  You just don't go.  It would tack negative points away from your school record.  I was always one of those that never thought it wasn't possible.  We did Chemistry at home, British Literature, Government, Economics, a fantastic Consumer Math that all high school kids should have to take before graduating.  Oh, the possibilities are endless.  If you'd like to DM me, we can talk more.  One more thing, we took our school work with us to doctor appointments, so we didn't lose school days. 

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. 

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!

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.

The "gold standard" for diagnosing Sjogren's Syndrome is a lip biopsy.  If you think that Sjogren's is a distinct possibility, you might want to present that to your doctor.  You don't want to miss something. 

Hi Kaitlyn - thanks for the hugs!!  When we were at Stanford, the doctor looked at her MRI and ruled out Chiari.  That being said, the MRI was not an upright one and, from what I've read, Katybug is right and that it needs to be an upright.  There is one about an hour or so away from us, but not sure about the insurance.  That's always a challenge. 

My daughter made it through the weekend, barely.  Her pulse is still high, around 120's.  I can tell her adrenaline is still pumping.  She'll probably crash tomorrow. 

Thanks Katybug, sounds like I have a lot of research to do!  I know that I've been on the Inspire forum, I think that is the one associated with EDNF.  If it's not, the forum administrator is from EDNF.  She mentions Dr. Francomano a lot as well as Dr. Henderson.  I looked into an upright MRI for her once, but was having trouble with the insurance wanting to okay it.  We have kind of restrictive insurance, so we can't go everywhere.  Would imagine those cost a lot, too.  I'll look into it again.  Could be that our chiropractor could write an order for one.  There's a thought.  I'll pop on over to the EDNF forum and see what I can find!  One more question....have you ever heard of anyone having any success with something called prolotherapy?  Just curious....

Yogini - thank you for your comments.  Yes, my daughter has a lot going on.  It's been really difficult to narrow down what is causing what.  I do know one thing, though, somebody has got to figure some part of this out to give her some relief.  Going to have cortisol and thyroid test run next week.  Am guessing the cortisol will come out high, but maybe not. 

Katybug, Thank you!  We just got back from visiting our PCP.  What a waste of time!  He had managed to get us through the weekend with the muscle spasms and all that, but when it comes to EDS/Dysautonomia/POTS he hasn't got a clue.  He just sees all the meds.  I will definitely look up cervical instability.  I do know that you had suggested somewhere in one of my posts (I think it was you?) about cervical vertigo.  It would make sense.  Her chiropractor said that in looking at her xrays, at the top of her spine she could see a tendon/ligament (get them confused) that appeared to be very thick.  It would be holding that part of her skull too still, while the other vertebrae were too loose.  When my daughter was 3, she had spinal cord surgery for tethered spinal cord.  The surgeon said that the filum was one of the thickest ones he had ever undone.  Would say that the thick tendon/ligament that the chiro saw would go along with the thickened filum.  We have been back in touch with Stanford, who, for the west coast anyway, has the only doctor who has any conception of EDS, Dr. Jaradeh.  They are hard to follow-up with, but discovered that they do phone appointments.  Think this will be our best option for now.  Do you know that our PCP was even balking as to why we were asking for a cortisol test?  Just write out the stupid form, will ya! 

You know, as soon as I started this thread, my daughter DMd her friend in the UK and asked her about it.  She said, 'oh yeah, this can definitely be part of POTS'.  A 16-year-old girl.  If only these doctors knew what these kids and all of you know....