Frustrating Doctor Appointment - Got Nowhere

[DizzyGirls]

I was so looking forward to our appointment with the Pediatric Neurologist yesterday. Finally, my oldest had an "official" appointment with him and I brought along a list of her current symptoms - a copy for me and a copy for him to follow. I had listed things like "debilitating fatigue", "the constant vertigo that has plagued her for the past 7 years", "lightheadedness", "heart palpitations", "intolerance to heat and cold", "GI issues", "bladder issues", "low blood pressure", "migraines". Can you all see where I am going here? I thought it was pretty clear that she has a lot of autonomic issues. He basically skimmed over all of these. I asked him if he thought these were autonomic issues and he said some "yes", but didn't feel that it was the direction we should be going. I was thinking "huh", you've got to be kidding me! Did mention that there was a new clinic at Stanford that specializes in autonomic dysfunction, but didn't want to go that direction yet. He spoke with our genetics team and both feel that we should have complete exome testing done on both girls (to the tune of $10,000). I know from what he has said in the past that it's not always clear-cut. The geneticists are going with the hypothesis that the girls have Ehler's Danlos Syndrome Type III, but now nobody is saying anything until we get answers from the genetic testing. Last time I checked, I didn't think there was a genetic marker for EDS III. I know he is looking for other things, too, though.

My oldest has been having migraines almost every day for the past week. The imitrex helps, until it wears off, and the next day she gets another one. I know you can only take so much Imitrex in a month. No help for those either. I understand not wanting to just dole out medication, but migraines can have the propensity to cause strokes (my mother has had 12 of them!) My daughters are on a long list of meds (as most of you know, it's unavoidable) and I wanted to try and streamline them, but he didn't want to do that until we get some results from the genetic testing. BTW, has anybody ever had to taper off of Lorazepam?

I know I'm venting, but my mom has seen 7 different neurologists over the years and still has not found help, I'm thinking that they are overlooking the obvious. Oh, also, our ped neurologist is getting married on Sunday, so that explains why he was miles away and not wanting to do anything. He shouldn't have been making appointments then.

Thanks for listening!

Dizzy Girls

[Katybug]

Wow, DizzyGirls! I'm sorry it wasn't a good appointment. The emotional Rollercoaster of getting your hopes up and then being let down by doctors is really hard.

You mention your mother having strokes associated with her migraines....have your mom and girls been tested for the genetic marker for vascular EDS? There isn't a genetic test for the Hypermobile type but there is one for vascular (with a 95% accuracy rate) and with a history of stroke in the family, it is definitely a consideration and also extremely important to know in order to take early preventative measures.

[DizzyGirls]

Thanks for the suggestion. There are a couple of things with my mom that made me think vascular, too. Maybe that's what they are looking for. Just wish they would elaborate more. I'm not the type to beat around the bush when they have something in their heads and don't want to "alarm" the patient. Believe me, we've had enough alarming to last a lifetime. Our lives are filled with things that we say "wow, did not see that coming". Sometimes a "heads up" would be nice. Thanks!

[dizzyallie]

Hi dizzygirls, how frustrating for you. I'm sorry. Gee the genetic testing is dear! I wonder what treatment would be offered if it is that form of eds? Sorry your daughters having migraines. Has she had a current MRI perhaps. Thinking of u all.

[DizzyGirls]

Thanks for your support dizzyallie, btw, love your username! Not sure what the treatment would be. I think they just treat the symptoms. She's not had a current one, but a previous one came back normal. March is her bad season of the year, allergies and change in seasons. Always has affected her. She also has an issue with her foot where her bone is growing curved and is causing a tremendous amount of pain for her. She can't walk without it swelling up. Looking at surgery soon to correct the problem. Think this extra stress on her body is triggering the migraines. Stress (good or bad) is a trigger for her migraines.

Can I ask you a question? In your signature line you say that you have constant dizziness with episodic vertigo and also a brainstem dysfunction. Do you have a Chiari malformation? Was just wondering what your dizziness symptoms are and how you control it? If you don't want to share, that's o.k. too .

[SarahA33]

Dizzygirls,

Hi there,

http://www.ucns.org/go/subspecialty/diplomates --- I wanted to just give you this website incase you were interested in finding a board certified headache and migraine specialist. I facilitate a migraine support group at neurological clinic locally and this is the website where you can locate physicians by city/state. Not sure if your interested in that direction or not, just throwing it out there!

Also, to my knowledge, (not medical advice) Lorazepam, or Ativan, definitely has to be tapered gradually or it can cause whopper's of side effect's including withdrawl seizure's, sleep disturbances, panic attacks, nausea, hallucinations, sweating, and a list of other really cruddy things.

Sorry to hear that you had a disappointing appointment... Sounds like you have a ton on your plate. I agree with you, a heads up from the doctors would be nice. Hope you soon get the answers you are seeking! Hang in there!

Sarah

[Christy_D]

_Dizzygirls,

_{I'm sorry to hear your daughter is going through this. Regarding the migraines, has the neurologist recommended sending her to the ER and getting an IV of meds to break the migraine cycle. When my son had migraines that would not go away and migraines meds wouldn't help, his pediatric neurologist would send us to the ER. He would call ahead and order an IV of toredol, relgan, and benedryl. It would knock him out and he would wake up migraine free. I know the reglan can cause issues, but I think it is more so for people who take it often. Just a thought.}

_{Also, my daughter was diagnosed with EDS, hypermobility type, and there is no genetic test for that one yet. She also has POTS. My son has been diagnosed with MCAS and POTS (probably has EDS as well).}

_{Keep pushing for answers,}

_Christy

[DizzyGirls]

Hi SarahA33,

Thanks for the link! I will definitely look into it. She actually made it through yesterday without a migraine, Yeah!! Don't know how long that will last, but we'll take what we can get. As for the Lorazepam, I was pretty sure that's what it did. Nice to have a second opinion too. Thank You!!

Hi Christy,

Thanks for the info! My daughter takes Reglan once a day and has for years (it was the only way she could eat!), so we have that on hand. The toredol rang a bell too, because I think that was what my mom's doctor had given her in combo with something else to control an acute episode of vertigo (she was just telling me about this). And the Benedryl, that's always a good one. Thank you so much, it gives me something to go on. And as always, I'll never give up trying to give my kids a chance at some assemblance of a life. They don't know what normal is, but I'd like to give them something as close to normal as we can get.

Thank You!!

Dizzy Girls

[dizzyallie]

Hi dizzy girls, I ve thought of you all often after reading your story few weeks back. Think I commented there but not sure what I said ... Der. Great brain. No I don't think I have a chianti malformation. I just get told brain stem dysfunction, like something in my head has been tipped upside down. Hmmm my symptoms, all over the place. I find typing even this very hard. My eyes jump, and my brain tires quick. The dizziness began as vertigo then stayed since August 2010. It was horrific for the first 3 years. The past year hasn't been as awful by comparison but it has still been **** if that makes sense. I find all tasks hard. Looking at people, trying to shower, looking at tv, it seems wherever I go it is with me just at a varying level. Even trying to wipe myself on the toilet. It's a constant state of disequilibrium. Sometimes it will wake me at night with a jolt. It is an awful way to live to be honest. I can only walk short distances say 20 to 50 metres, and at my worst, I can barely do 5 metres or stand beyond 5 minutes. All tasks are hard eg making a cup of tea, sitting in a car, talking. On top I get the spinning vertigo that hits when it wants. All I can do is take stemetil and not move. It is frightening being always dizzy, like your head is full of water. Nothing has been able to help me except, pushing myself to move when I can. Or practice sitting in chairs etc. I try to maintain movement because if I don't i know I will be worse. Very hard though, by afternoon I've usually hit the wall and need to lay back. CFS definitely has a part to all this. At my most exhausted the dizziness is cruel. Feel free to msg anytime. Thinking of you and your daughters. I hope your daughter can get her bone tended to also and find some relief. Best wishes to you all. Btw, Even this post, I have typed in stages. Head movement also is a big issue for me eg looking down.

[dizzyallie]

Haha chianti I meant chiari

[xRobin]

Hey, sorry you're going through all of this, best of luck trying to get some answers.

Regarding the migraines, I had a serious bout of them a few months before getting major dysautonomia symptoms. Mine had weird, neurological auras that were very scary and I went to ER twice wondering if I was having a stroke. Nope, just migraines! (Sorry about your mom's 12 strokes, sheesh.) Unforutnately their IV meds didn't work for me.

My migraines were daily, 2-3 a day, and they didn't want me on an abortive or an NSAID or god forbid a narcotic. I got lucky and did well with the first preventative I tried which is gabapentin. I realize you don't want to add to the list of meds your daughter is taking but it really has been a life changer for me. Topomax and Depakote have helped a lot of people too I do get mild headaches but they are like a spring breeze compared to the melon crushers I was having!

And, yes, I have had to taper off lorazepam, no problems. Ask a doctor for a taper schedule and make sure she follows it.

[DizzyGirls]

xRobin,

Thanks for the response! You know, I do always think about strokes, that's why I get so concerned. My daughter is already on gabapentin for nerve pain, but i was doing some reading and had seen it pop up several times for migraines. Maybe they need to up her dose. Hmmm. Glad you got off the lorazepam, no problems. She takes it for her vertigo, but it's taking more and more to control it and it's sort of interfering with trying to take other things. Will try to do it slowly and maybe it won't make the vertigo too bad.

Thanks!

DizzyGirls