DizzyGirls

Melatonin is a HUGE help for my daughter.  According to the article referred to above, it says that people only fall asleep 7 minutes faster than they normally would.  I don't know by whose standards they are referring, but they certainly didn't ask my daughter (or anyone like her) about how it affected her.  She is sleeping peacefully, most likely, a good 2 hours earlier than normal.  Melatonin has been a huge help for her severe pain surges at night.  As any responsible person should, always check drug interactions based on what you are taking and the melatonin.  If you are little groggy the next day (as I am sometimes when I used to take it), have a cup of coffee before venturing out in a car. 

Thank you all for your well wishes and encouragement!  I do wish there was a break in here somewhere, but, alas, none in sight!  I will send her doctor a message tomorrow, or maybe tonight so that she gets it in the morning!  Sounds like there are quite a few out there to try, so that is great!!  She was on atenolol while in the hospital right after her surgery because they didn't have any IV propranolol.  Actually, the atenolol worked fine for the 10 days she was there.  Not sure if we would have noticed if there were side effects, as they would probably have been overshadowed by the surgery pain.  Thank you!!

I was wondering which beta blocker might be good for my daughter's tachycardia.  The propranolol she's on is making her gain weight and it is making her body even more uncomfortable than it already is.  She has a very small frame and the extra weight equals extra stress on it.  Anybody have any good ones that don't have weight gain as a side effect?

My mom, who has Lupus, UCTD, and EDS used to get a sore throat off and on.  My oldest daughter, who has EDS, Dysautonomia, and possibly Lupus, gets a sore throat every time her body is stressed.  Seems to be one of her standard signs of overexertion.

Have you ever been tested for Lupus?  A lot of your symptoms sound like symptoms of lupus.

I would recommend a neuro GI, preferably one who is knowledgeable about Dysautonomia.  They can do a gastric emptying study to see where the delay is in her digestive system, maybe a Smart Pill, Upper GI endoscopy, etc. 

Yes, Reynaud's.  Also, I'll throw in that the opposite of Reynaud's is called erythromelalgia.  My daughter has both at times.  Her hands can sometimes register up to 102 degrees.  Can be very painful.  Took us forever to figure out why her hands were doing that.  Reynaud's is when the blood vessels constrict too much, erythromelalgia is when they dilate too much.  Try some warmish water to warm up those hands!

I can relate!  I poked my head out the door last night to see what kind of animal was making this horrible piercing chirp/noise.  It was a mockingbird sitting on the fence!!  I scowled at him, but don't think he cared!

I'm sorry to hear that your daughter is feeling bad again!  I don't know anything about SVTs, but I do know a lot about juggling multiple complicated things.  My heart goes out to you all and I hope you can get your daughter back to baseline soon!

That's funny.....  They do use caffeine in hyperactive kids to calm them down.  Usually that only pertains to kids, but, if there is a USUALLY  in a sentence, I know that there are those who have opposite reactions, such as yourself.  

Ha Ha!  I've been referred to a Mama Bear a few times.  It's a compliment!  It never ceases to amaze me that as soon as you find something that works really well, they want to go and mess it all up.  We seem to have bought some time, though.

Heard from the PA today, she apologized that I had gotten the "impression" that they would just stop my daughter's medicine.  Apparently, she was only telling me of the side effects and general effects of the medicine (there were none in the message at all) and that they would never stop her medicine without consulting us first.  She said she would see my daughter at the end of the year and we could discuss it then. 

Seems I got the wrong idea about what she was trying to do (biting my tongue right now).  Surrrrre she wasn't going to change her meds.  Nice try.  Not sure what she was trying to pull, but seems she's backed down for now.  Hopefully we won't have any problems by the end of the year.  Whew!  One problem averted, 99 more to go!  It is nice to know that there is nothing wrong with being on Florinef for more than 3 years.  If she tries this again, she will have to give us a more detailed explanation for the "much needed change".  Thanks everybody for your comments and support!!

Yes, I don't get it.  She only takes 0.1mg a day.  It's a teeny dose and it works.  I am so frustrated because it is just going to upset the apple cart.  She's already on a new med right now for  Dopa Responsive Dystonia, I don't want to switch now.  We won't know what's causing what.

I was sending a message to my daughter's neuro PA regarding a standard refill for her Florinef rx.  She asked how long she had been on it.  I told her since 2015.  She said they don't usually keep their patients on it more than 3 years.  After that, they would have to find something else to control her bp.  I was thinking what???  You've got to be kidding me!  Anybody know why the time limit or ever been told the same thing?

Hi Edsia!  Welcome to Dinet!!  Did her pseudotumor cerebri improve after surgery?  Yes and no.  She had to have a lumbar puncture a few months after surgery, but her ped neurosurgeon said it's not uncommon to have that happen after a cervical surgery like my daughter's.  So now a few months later, she doesn't seem to have that problem anymore.  Different problems have surfaced, just not that one.  We are dealing with myofascial pain as well as severe muscle spasms.  Also trying to rehabilitate muscles that have not been used correctly over the past couple of years.  I'm sorry you are so ill.  It's got to be incredibly difficult to live where there are no options.  I get really frustrated at doctors here in the US who aren't familiar with EDS, POTS, Dysautonomia, craniocervical instability because I think after all the schooling they've been through to get to their specialty, they ought to know this stuff.  But most don't.  We had wanted to see Dr. Frasier Henderson for her spinal fusion surgery because he is the best of the best, but he was so far away.  We found a pediatric neurosurgeon at Lucille Packard Children's Hospital at Stanford University (he's actually the Chief of Neurosurgery) and I would not trade him for the world!!!  He grabbed a colleague in the Adult Spine Department (heard from some of the interns that he is world renowned for cervical reconstruction), and, with their collective teams, put my daughter back together.  I hope that you might be able to find someone soon.  There has to be somebody that researches the latest and greatest medical challenges.  I wish you all the best!!

Yes!  Concentration does help.  We finally figured out that that was the key when she was walking and not falling.  If you interrupted her, down she would go.  Also, if people are hovering over her when she falls, she can't get up.  You have to leave her be and she can get up on her own.  It's a crazy thing!  No rhyme or reason for some of it.  Thank you for your thoughts!!

Thank you both for your words of wisdom!  When he diagnosed her with dystonia, I thought, great!  A diagnosis!  Then I thought, wait a minute, dystonia is a symptom.  What's causing it??  So going on the fact he mentioned dysautonomia, we will start there.  I asked her if she wanted to try one of the clonazepam that he prescribed.  She said, "nope,  I've got energy today and things to do!"  It wasn't a lot, but she had some plants that needed tending and was going to help me clean out our back room.  Even though she has trouble getting around, she doesn't let it stop her.  I don't blame her.  I just want to make sure that it doesn't get worse if we aren't treating it.  She can manage around the house, it's not always pretty, but when she's bad she can just stay put.  Just would like to know what part of the dysautonomia is triggering it and how to make it better.  Hers is generalized, the legs, pelvis/trunk are the worst.

We saw a geneticist at first, but he never committed to anything, only a possibility.  After that we saw a neurologist at Stanford's Autonomic Clinic and he had no reservation about telling us that both girls have EDS type III.  From what I've seen in my own family, POTS will be a lifelong issue, as EDS is not going to go away.  Their POTS symptoms started in their teens and the EDS symptoms started, well, at birth.  It's just gotten a lot worse the last couple of years for both girls.  They are 19 and 21.  I hope this helps!

My daughter was just diagnosed with dystonia on Monday.  She has Ehlers Danlos Syndrome along with her Dysautonomia.  The neurologist didn't give us an in-depth explanation about why the dystonia, but he believes it mostly likely has to do with her dysautonomia.  Another doctor that we see had said that she believes my daughter's Sympathetic Nervous System is a little "lazy" and only works when it absolutely has to.  Thus why my daughter's dystonia is worse inside, than outside.  Being outside, the body has to be alert and aware of it's surroundings, so her Sympathetic kicks into gear, but (for my lack of being able to explain this any better) inside the house it doesn't seem to be too worried.  I know this is odd.  Does anybody have Autonomic related dystonia? And, what are you using to treat it?

My daughter's highest was 156, but I know that many here have had it much higher.  She takes propranolol now and it is so much better.

It's been 6 months since her surgery.  We were told ahead of time that it would be a "monster" surgery with a "brutal" recovery.  It has not disappointed.  She ended up having C3-T4 fused.  They went in through the front (anterior) to reconstruct the curve of her neck and fused C3-T1, they flipped her over (said it took an hour just to do that!) and went in through the back of her neck (posterior) and fused C3-T4.  Bone grafts, titanium rods, plates, screws.  She did have two neurosurgeons and their prospective teams as well as a hand picked anesthesia team because of her POTS.  You should make sure they are really up to speed on POTS.  She was in the hospital for 10 days and then acute rehab for another 7.  It's been rough.  She did well for a while.  But, the last several months things have been getting worse again.  A lot of muscle spasms.  The knots at the base of her skull are causing migraines and really intense skull cracking headaches, and her muscles on the upper back and shoulders are really giving her fits.  She had in-home PT for about 8 weeks after and did really well, then the PT got transferred and he said that there wasn't really much else for her to do at home.  She needed to go to an outpatient PT.  The problem was, one of her neurosurgeons was being really conservative in getting her out to PT and waited too long.  Her muscles have all tightened up and are like ropes.  Her upper back is very heavy now and solid from being fused.  Takes a lot of strength to carry it.  The pain from this is beyond what we ever expected at this point.  We did find out from a spine site that after 3 months, there can be an upswing in pain.  That was definitely the case for her.  So, with PT, without PT, whose to know if it would have still ended up this way.  Her younger sister has EDS, dysautonomia, and was just diagnosed with dystonia.  We are thinking the older one has it as well.  Hers follows the description of people with EDS and dystonia.  Just read a really interesting paper on it.  Anyway, I hope I didn't scare you.  I just want you to go into it with all the cards on the table.  Her POTS has not changed, however, from the surgery.  Many of the neurological symptoms did, but some are starting to creep back.  I don't want you to think your POTS is going to magically get better with this surgery.  It will most likely get worse for a while because of the stress on your body.  One of my daughter's neurosurgeons is from peds and he is especially aware of POTS, so he kept hers under control really well after the surgery.  More than I can say for the PTs, but that's another story......  Good luck to you and if you have any more questions, please don't hesitate to ask!

Just a thought on putting on compression stockings.  This only works if they are the "toeless" kind, but after my daughter's spinal fusion surgery this summer, they taught her an easy way to put the stockings on.  Take a plastic bag and put it over your foot, scrunch up the stockings, and slide on over the bags.  Pull the stocking legs up from the toes to get the bags off your feet!  Suppose you could leave them, but that would be a little sweaty!

My daughter's skin does this, too.  Her doctor called it livedo reticularis.  Looks like the same thing. 

She's been on valium about 2-1/2 years, before that she was taking lorazepam.  Right now here valium dose is about 27 mg.  She is coming down from 35.  We are slowly breaking the tablets up and needing less.  Don't know how low we'll be able to go.

JB246, welcome to the forum, and well said.