DizzyGirls

Hi statesof and katybug! Thank you for your replies. I am thinking that you all are probably right, and that we should seek help no matter where it is. It might be to our disadvantage to keep things all in one place. My only fear, though, is the TTT making their vertigo so bad that they can't get it calmed down. Then what will we do? Also, my girls can't lay down. They just start to spin even worse. I guess that is my biggest fear, is that they have to lay down for this. Oh, one question....How fast do they raise you up from laying down? Does anyone know if it is a manual or automatic bed? Those automatic beds make them really spin. They've been through so much and the important stuff hasn't even started yet. Thanks for your help!

So, I have a predicament. My daughters have been selected to be a part of the Autonomic Clinic at UCSF, but come to find out, it is not going to be up and running until after the first of the year! Yikes!! Their neurologist was asking us to have two MRIs done, a CT, a trip to Urology and ENT all by October and mummbled something to himself that they will open on a Wednesday. We got all of them accomplished with the exception of the ENT doc. My problem is this: we have an appointment scheduled on Nov 5 for Stanford to see Dr. Jaradeh at the Autonomic Clinic down there. When I made the appointment, we had no idea that there was going to be a Clinic up here near us. Also, our neuro said that the Cardiologist that will be part of the Autonomic Clinic at UCSF doesn't like tilt table tests and said something about sending us home with a device. Not sure what he meant, but if the doctor doesn't like tilt table tests and wants to send us home with something to record or log (or whatever?!) it sounds much more appealing to me. My daughters are hanging on by a thread, and to make their vertigo and other symptoms worse than they already are is very frightening to me. I've read all of the posts on this and other forums about the TTT, it's sounds like something out of a horror movie. I am seriously thinking of rescheduling our Stanford appointment, but I don't know!! HELP!!! Here's another problem: After my oldest (19) had her MRI and CT (to clarify things), they found a cyst encased in her petrous bone. This is located right near the auditory canal and some of the symptoms of this are vertigo, TMJ pain, fullness in the ears, severe headaches, etc. She has all of these. Should I even haul her anywhere until after we see the ENT and they decide what to do about this cyst? BTW, the petrous bone is the hardest bone in the body and is also the least accessible. Go figure! October is going by quickly and I don't have much time to figure this all out. We don't see the ENT until mid November. There is a very slight possibility that they might be able to get the girls in to see the Cardiologist (the one associated with the Clinic), before our Nov 5 appointment at Stanford, but it will take a miracle. Any advice/help would be much appreciated! Thanks!!! p.s. pretty sure they have Hyper-POTS, do they diagnose that differently than the regular. I thought that I had read on here that they did. Not sure how the Hyper variety would do with a TTT?

My daughters finally got a Rx for Florinef a couple of months ago. No help yet. They are at 0.1 just once a day. My youngest said there are times when she might have just a bit more energy, which would be great because both of them are almost housebound. The only thing that I noticed is that my youngest is starting to retain water. She eats a ton of salt, so I told her to slow down on that. Could the Florinef be doing that too? Also, how long does it take for any positive results to be noticed?

My daughter has had more doctor appointments the last few weeks than there are days in a week! It's been nonstop, but we think there is a possibility of a cause for her vertigo. After an MRI, it was discovered that she has a cyst within her petrous bone - a little A&P for a sec... part of the temporal bone.... hardest bone in the human body and the most inaccessible, just outside the auditory canal - and, as cysts go, seems to be filled with a proteious fluid. Ok, so a doctor hasn't exactly explained the results of the CT yet because he is on vacation, but they do seem to treat these by draining them. Some of the symptoms of these cysts include, you guessed it, vertigo, unusual pressure in the skull, TMJ issues, etc. My daughter has all of these symptoms and has always known that her left side was much worse than her right. Everything seemed to be eminating from the left. Could explain at least some of her issues. She had an MRI done several years ago and they didn't find anything. So, either it was too small to detect or just hadn't formed yet. Now, I don't think this is the answer to all of her problems by any stretch of the imagination, but, if they could relieve some of her vertigo so that she could at least read a book, or write a song, or type on a computer so that she can work on her own book, it would be fantastic. She still has many other forms of Dysautonomia, but the vertigo is by far the most debilitating. So, keep her in your thoughts and prayers, she's not done yet and she's so tired. BTW, anybody else have/had a petrous cyst? Just curious...

My daughter has left sided vestibular issues also. She has been dizzy for 7-1/2 years (she's 19). It's been a battle to keep her vertigo under control. Both of my daughters actually have it. Incidently, an MRI and verified by a CT found a cyst in her petrous bone near her auditory canal. She is actually happy that somebody finally found something. Now we're just waiting to hear from either her neuro or ENT as to what do we do with it. So, hang in there and I hope somebody can help you both real soon. p.s. I like your great play on the word "dyssy". Clever

So great to see a kid being able to be a kid again!!! Thanks for sharing!

Thanks ks42! I'm going to check into that right now.

Thank you all for your advice! I will keep it all in mind. I don't want to cause any other problems, and her stomach has always been an issue. The only way she was taking the Motrin was if she took two swallowable Pepto Bismol with it. Sensitive stomach, so we want to be careful. Also, the hypertension, we want to steer clear of that. ks42 - do the Omega 3 supplements bother your stomach at all and what is your dose? My mom and I were actually discussing those the other day (she has horrible headaches, too). My daughter does well with Tylenol, so if we could get them down to a dull roar and then she could take the Tylenol to get the rest of it. Thanks!! We actually have a new friend who does acupunture to keep her symptoms in check. Seems to calm everything down, vertigo, headaches, etc. Got a referrence from our chiropractor. Somebody that she trusts.

My daughter is having to stop taking her Motrin because she was just prescribed Florinef. Guess it's too hard on the stomach to take both - that's what the pharmacist told me anyway. The Motrin was really keeping her headaches (especially the stabbing pains she gets) under control. Not the migraines, but there were headaches that she would get that felt like her head was so full that it was going to explode. There seems to be some problem with anti-inflammatories and Florinef. Does anyone take Motrin and Florinef and not have any problems? Thanks for your help!

That's for the happy thoughts! I forgot to put this in my original post, but if anybody could tell me how they reacted to Florinef that would be helpful. I'm not really sure what to expect, how many symptoms this will alleviate (if any), and how long it takes for it to start working. Also, seems that it might be hard are the stomach?? Any personal experiences would be great!

I posted last week regarding my daughter's chronic unrelenting vertigo in addition to her blurry vision, extreme headaches and migraines. Well, just got home from our visit at UCSF (soooo tired, so I'll try to make sense of everything!), and we finally got an official diagnosis of Dysautonomia (he's says it's bigger than just "POTS"), of course POTS (he's thinking possibly "hyper POTS", but needs to do some testing to determine that. Also, the big thing....wait for it.....is that UCSF is forming an Autonomic Clinic (sounds like Stanford's) consisting of neurologists and cardiologists that is to open in October! My daughters are two of four of his patients that will be the first to be seen! My daughter and I had to find a bathroom after the appointment and we did a happy dance once we closed the door! Also, last but not least, each of them got a prescription for some Florinef. I think it's been a good day and I'm going to take a nap now!

I find this interesting because my daughter is having horrible vertigo, takes a boatload of meds (diazepam, meclizine, sudafed) already, and the only thing she came home with from the ER was Benedryl. Oddly enough, it is helping a little. Not hugely, but some. Benedryl seems to have many uses!

Thanks everybody for your kind words and suggestions! Took her to the ER that next day, and, because of everything she takes already, all they could give her was some Benadryl. I was a little miffed at the lack of help, but, I'll have to tell you, it is helping. Not immensely, but some. Right now, we'll take it. I was able to get her an appointment with her neurologist at UCSF next week, and hoping that he doesn't gloss over this and is able to give her some medicine or switch around the ones she has in order to keep this under control. So frustrating!! I will keep in mind the eye exercises, too, as we may need them also! It is really hard to tell if this is caused by her POTS, migraines or something as simple as allergies. Her neurologist's nurse mentioned some new medicines lately in the treatment of POTS, so at least this is on their minds. Could be good timing. I'll give an update after her appointment. Thank you all for being there!!

Thanks Katybug! I believe that her doctor said she has horizontal nystagmus. I know when it gets really bad that her eyes just dart back and forth (when they are closed) and it makes it extremely hard to settle down and sleep. She finally fell asleep last night, hoping that it will be better today. Poor thing is just hanging on by a thread. Not sure how we are ever going to wait until November for our appointment at Stanford. Ugghh!

I'll make this quick, it's 2 a.m. My daughter is having more severe vertigo than she normally does. She's got a severe headache (already took a migraine pill, no help) and here eyes are tracking back and forth in her head. She can't control them. She already takes diazepam for the vertigo and it usually keeps it under control. The fog came in early this evening and I think that's giving her problems, too. I know several of you battle vertigo, too. What do you do in a crisis? I was hoping to pool some suggestions in case there was something that I hadn't thought of. Thank you for your help!

Hi Sarah, Thanks for sharing your experience. I'll check out the links you sent! This appointment won't be easy, but I thinks it's our last resort. Just hoping the girls won't be subjected to too many tests that make them feel even worse than they do. Thanks for all of your support on this site!

My daughter just tried this last year, but only a couple of doses. Lowered her blood pressure too much. Would almost pass out every time she stood up.

My daughters have finally been given an appointment at Stanford's Autonomic Clinic to see Dr. Jaradeh. I am so excited!! Their appointment isn't until November so I have some time to research, and mentally physically prepare the girls for the trip down there. They said there will come cardiac testing. Not quite sure what this is. Anybody been there and had this done? Was wondering what to expect. We've already gotten a special okay for them to be able to take their medicine the morning of the appointment. I spoke to the nurse and told her I wasn't being difficult, but that there probably wouldn't be an appointment if they couldn't take them. She finally got the hint that they are in a very medically precarious state. They work fast. After the insurance gave the ok, Stanford called within 48 hours to schedule the appointment. There were even a couple of calls from the Neurology department just letting me know where things were. I am hoping this cardiac testing doesn't throw them for a loop. We still have to get home! Also, I'm hoping they don't have to have a tilt table test. Would the cardiac testing be enough to get definitive POTS diagnosis?

Your "not sure symptoms" sound very much like my 19-year-old (who is very severe at this point in time, trying to get to Stanford) when she was little. All of my daughters' symptoms started when they were very small.

When my daughter gets stressed, I mean good things and bad stress, her vertigo goes haywire. Both of my daughters have had vertigo for about 7 years. We are just now linking it to their POTS. Your maneuvers with your neck could have possibly triggered it, but my gut says that I'll bet the stress of the robbery has triggered it. It's a very traumatic thing to have someone break into your house. I know that my one daughter also has TMJ and that also goes along with ear pain and worsens her vertigo. They take meclizine to help it. You may want to try 25 mg. Also, phenergan will help with the nausea. I don't think I would take those both together, as they are both a type of antihistamine. Best wishes to you!

Thanks gjensen and TWynnB for your replies....I thought it might have had to do with her dysautonomia. I know that everything isn't always related to it, but it just sounded like an adrenalin/heart rate thing. Going to keep an eye on her to make sure it doesn't get worse. Thanks~

My daughter is having a new symptom, so I thought I'd ask all of you - the experts - if this sounds familiar. She said that while she is sleeping she can feel a rush of blood to her head and hear her heart pounding in her ears. I thought this sounded like something someone wrote not too long ago, so forgive me if I'm reiterating something that's been discussed already. We are still waiting for the authorization from our insurance for our appointment to Stanford. Meanwhile, we are trying to maneuver through all of their symptoms. Your help is greatly appreciated!!

I'll second (or third?) the Wellbutrin. My friend's daughter takes it and it has a stimulating effect. Helps her think more clearly, also, some caffeine, but not too much.

Ohhh, I am so sorry this is happening. One of my daughters has this problem. When things got too bad, we had to resort to an Ng tube for almost 3 months. It did work wonders. They used peptamen junior. Was so much easier to tolerate for her than the last Ng tube formula she had. I think I saw where you were using the nutritional drinks. I would keep drinking those as much as you can tolerate and then see your GI doc. Best wishes to you!

I was wondering, has anyone tried oral lavender to help with anxiety? I'm not a big "natural medicine" person, but if it works, you don't get addicted to it, and there are no withdrawals from it, then I was considering giving it a try. I don't think it would help my girls with their vertigo, but maybe with the anxiety. A medical professional recommended it to me. I also was wondering if it would help with the anxiety that happens from withdrawals of benzos. Any thoughts? I haven't done my usual research on this, was just curious if it could possibly be an option.