Drop Attacks.

[WinterSown]

I went to an ENT today, my cardiologist wanted me checked out for labrynthitis; I've been tripping more the past few months. I may not have that. I tested negative on a Dix Hallpike, so no vertigo today. YAY! I was hearing tested in a booth and my hearing is just fine. Yay again! I will be balance tested in ten days; there are some drug restrictions and I won't be able to take my vertigo diazepam script for 48 hours before the test. No coffee 24 hours before the test, either. I'm more freaked about giving up the coffee. The doctor talked to me about Drop Attacks, which I have never heard of, she said I have parts of something called Otolithic Crisis of Tumarkin (another name for Drop Attacks) which could be related to Menier's. Drop Attacks are explained as suddenly falling without losing consciousness , and I usually fall to one side after my world tilts sideways; I always trip towards the right. After the balance test I will likely see a Neurological ENT for something which I can't remember. But I do remember her telling me twice that it is unlikely there is anything that can be done to help the condition. If they can't find the cause they can't treat it. Crisis? Feh! I'll be in my blanket tent coloring and I'm not coming out until dessert. I want cherry pie and darn good coffee.

[DizzyGirls]

Yes, cherry pie and coffee!  I'll join you!  My daughters struggle with vertigo too, and they could never do any of the balance testing because it would have been dangerous for them to be off their medicine for 48 hours.  The drop attacks are interesting as my youngest has been falling around 10-20 times a day.  I think hers might be different than yours and it appears to be some sort of instability in her pelvis and whatever connects that to her legs.  She looks like a baby giraffe trying to stand!  I'm going to look these drop attacks up, though....just in case!  I hope you get yours figured out.  It's really hard to get around in this world when you drop all the time!

[WinterSown]

A couple of years ago, prior to any diagnosis, I went through a period of bizarre sensations in my legs that felt like parts of them were gone, not numb, gone. It was as if you had painted them with invisible man paint and they were not there. I was seeing and feeling them but my brain was telling me they were missing. Fortunately, I always had feeling in my knees and ankles; I taught myself to walk without limping. The worst sensation that I could not walk well ever was when my calves vanished--you say walk around like a baby giraffe--that is a perfect description of being so wobbly because it's not just being able to gain your balance, it's also having the strength to straighten your stance and correct your gait. In hindsight, if your Achilles tendons are compromised(?) you are going to have some problems with holding yourself erect and walking.

I turned on the keurig. I have apple cake.

[DizzyGirls]

Oh, I love apple cake and I'll bring my BIG coffee mug!  

That is a really bizarre story!  It's strange, when my daughter puts on any kind of brace, whether they are knee braces, a back brace, etc. it makes her body unable to coordinate itself or hold itself up!  I'll look into the Achilles tendon, too.  You are so right about the balance and strength.  It takes both.  When her legs are tired at night, it's horrible!  I'll have to ask her if she feels like part of her legs aren't there.  She's not mentioned that, but, it might not have occurred to her.  Sometimes you don't notice things until you think about it.  When this all first started, we were at a wedding and it was loud, stuffy, crowded, and had been sitting in one spot far too long.  She suffers from sensory overload, so when you put all those things together, it makes for "baby giraffe syndrome"!  Ha, that's a good name!  She fell three times before we had gotten but 20 feet from our seats!  I think it's a combination thing of dysautonomia, fatigue, instability, and probably something neurological.  We are seeing a neurosurgeon next week and will ask him his thoughts on it.  I'll let you know what he says!

[WinterSown]

Baby Giraffe Syndrome. I do like that name, that's perfect. We have zebras and now we have giraffes. LOVE it! May the neurosurgeon give you some insight into your daughters conditions, I am hoping for their best possible outcome.

 

 

[yogini]

Have you been diagnosed with both dysautonima and an ear condition?  i got misdiagnosed with an ear condition but turns out I had POTS only.  

Edited September 17, 2017 by yogini

[WinterSown]

I am sorry you were misdiagnosed. They will be looking closely at my vertigo and balance history; the physical therapist has already forwarded his notes to the ENT. I have POTS and Vertigo, I don't have any ear conditions otherwise. I had two positive Dix Hallpike tests last year and completed Vestibular PT which helped a lot with my balance and overall strength. 

 

[ishaqamina]

Have you looked into myoclonic astatic seizures.

my son had this epileptic syndrome where he would jerk as though punched in the stomach and then drop. This increased rapidly week to week till he was medicated . Not sure if it's relevant to you but the " drop" bit just brought back memories

[WinterSown]

I have never heard of that but some is familiar. I am seeing the electrophysiologist tomorrow morning, my physical therapist in the afternoon and the balance test is on Saturday. Hopefully, I can soon stop wearing my monitor, i"m starting to look like an octopus hugged me from all the rings on my chest where I pulled off the pads to change them. I'm not allergic but that glue works really, really well. I know I've got some wacky numbers on the monitor, I want to see what he says.

 

[ishaqamina]

Maybe ask for an eeg to rule out seizures. Till my son had them I didn't realise just how many different types of seizures there were and how differently they presented. Epileptic drop attacks are also known as astatic seizures. I think it's worth ruling out

[WinterSown]

I saw the electrophysiologist this morning. My ecg was fine and so were my numbers even when I was so lightheaded and dizzy I thought I was going to either hurl or fall off the table--and he checked and checked and checked. My numbers are always fine at visits. lol. There are some wonky numbers showing in the recorder but nothing scary, nothing dangerous. He cut some of my meds in half to raise my BP. I go back in two weeks and he wants to see the balance test results from the test I will have this weekend. 

 

[DizzyGirls]

We are going to see the neurosurgeon tomorrow...we'll see what he says.  Glad your numbers were good!  That's crazy, isn't it.  We all have so much going on in our bodies, but the numbers always come back fine. 

[WinterSown]

I hope the visit goes well for the girls. I'm keeping my fingers crossed for your family.

[yogini]

Does your electrophysiologist know you have vertigo? If you are diagnosed with vertigo and you feel dizzy, that dizziness might be from vertigo and not POTS.  That could explain why your numbers are fine when you are feeling dizzy.  

Separately, it is also possible to feel dizzy with dysautonomia while your HR and BP are normal.  

 

[WinterSown]

2 hours ago, yogini said:

Does your electrophysiologist know you have vertigo? If you are diagnosed with vertigo and you feel dizzy, that dizziness might be from vertigo and not POTS.  That could explain why your numbers are fine when you are feeling dizzy.  

Separately, it is also possible to feel dizzy with dysautonomia while your HR and BP are normal.  

 

Yes, most certainly. He's the doctor who gave me my TTT, I did not pass out but with good dialogue Dr Bender still made the diagnosis. I was explaining to him then my Venn diagram of light-headedness and he said 'Vertigo, what do you mean by vertigo?' And then he asked the winning question. He asked the right question. "What makes it feel better?" I said I go lie down. And that was how it was done. After that I started learning about dysautonomias and wandered in the door here. My new shirt arrived. Photobombed by my balance board. I practice on it almost everyday. 

[DizzyGirls]

I LOVE YOUR SHIRT!!!!  I just showed it to my baby giraffe and she cracked up!  Saw the neurosurgeon last Thursday and he watched her as she did all of her dips and drops and falls (almost hit her head on the sink in the room!).  He's ordered a brain and full spinal MRI.  His eyebrows just kept going up and I could see the wheels turning.  He never says anything, though, until he gets the imaging back.  Not sure what he'll say if it doesn't show anything.  I do know, though, that he wouldn't say it doesn't exist!  It's too obvious!!  She's now taken to walking backward.  Sometimes her legs won't go forward they will turn her in circles and she goes backward.  I'm thinking more and more it's a neuro/brain thing, not an instability thing.  But, he was so overjoyed to see my other daughter after her surgery.  Nine vertebrae fused and she is looking so much better than the last time he had seen her. 

[Pierre]

A year ago I HAD A DROP ATTACK THAT BROKE MY FEMUR, I LANDED IN THE HOSPITAL BY AMBULANCE THEN INTO A NURSING HOME FOR REHAB. UPON RETURNING HOME I HAD ANOTHER ATTACK, NO MUSCLE CONTROL. NO DIAGNOSIS FOR THE CAUSES. THEN, ANOTHER AMBULANCE TRIP WITH A SEVERE CASE OF VERTIGO. I HAVE BEEN TO NUMEROUS DOCTORS AND LIVE IN SEVERE FEAR OF THIS HAPPENING AGAIN. I DO PT TWICE A WEEK BUT I FEEL THAT I CAN NOT CONTINUE TO CONSTANTLY FEAR ANOTHER ATTACK. I NEED A HOSPITAL OR A SPECIALIST WHERE THIS IS SPECIALTY. MY ANXIETY LEVEL HAS SKY ROCKETED.

DOES ANYONE OUT THERE KNOW OF A DOCTOR WHO SPECIALIZES IN DROP ATTACKS?  PLEASE HELP

Edited July 20, 2019 by Pierre
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