'drop attacks' 'cerebellar fits'

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'drop attacks' 'cerebellar fits'

Postby prism » Sat Jun 16, 2007 10:49 am

Hi all,

I've been doing some reading on a 'seizure disorder' I found listed as a possible complicating factor with Chiari. Since I've had a 'flare up' of symptoms, including seizure-like, drop attack like problems I thought I'd ask--
Any of you that have drop attacks, or cerebellar fits-
from what I've heard, read drop attacks don't usually have lingering effects-
and I'm not sure about the after effects of the 'fits'. I typically have a lot of motor control difficulty following these problems. The duration varies. Any one have any comments?
prism

Here's a link on what some call a seizure disorder/cerebellar fit as a Chiari complication. http://www.aans.org/education/journal/n ... 11-1-4.pdf
prism
 

Postby mac » Sat Jun 16, 2007 1:44 pm

Hi, prism...

first of all, I'm so pleased to see you doing this kind of research! You (and we ) will learn so much from the medical articles we find online. And these things we learn, we can take to our doctors and discuss them. I have read the report you linked to and have saved it to favorites!

Some thoughts in random order:

*When you have a drop attack, does your head go back and hyperextend as in the drawing? I learned a lot from reading this and seeing that graphic.
*I had always wondered about a seizure/Chiari connection because seizures are not listed as a symptom of CM, and few people complain of them. Thus, I have sort of doubted that there IS a connection. Reading this article, what I take away is that these people are having "drop attacks" or cerebellar fits, NOT true seizures. It states that the patients were given EEGs and EMGs etc and all came back normal. Their doctors, ignorant of the drop attack disorder and/or CM, thought they were experiencing seizures. This is very good information.
* There is a lot of "meat" in this conclusion to the article: "have epilepsy, the major finding in our study was that the tonic posturing seen in Chiari I malformation patients with cerebellar fits can be mistaken for epilepsy and lead to a delay in diagnosis."
* I hope specialmomx2 Paula sees this and reads this. Paula, do you think this could be what you are experiencing?
* I have long understood, first learning at the feet of SarahinParadise, that drop attacks and apnea are red flags of brainstem compression. I have never had a drop attack. I have had what one doctor called a Grand Mal Seizure (it happened in his office) but later, after talking to a few neurologists, they do not believe it was a seizure at all. It happened in reaction to great pain, and I feel it was the vagus nerve doing its thing it does when someone does experience a jolt of great pain.
* Since the scientific believes (they are not sure) that the cerebellum affects motor function, this makes perfect sense, doesn't it and explains your problems with this function post a drop attack.
* there are several people including Keesha I believe, how experience DAs.
*The article says not enough has been written about drop attacks/CM relationship, no studies until they did theirs 1994-2001. I don't know about that fact today, but I know I have not read a lot about it. I'm glad you brought this to my attention.
** Best of all, this article shows us that decompression surgery can greatly help those with CM1 and drop attacks. "Gratifying results", I like that!

thanks, I like this sort of stuff.

mac
mac
 

drop/cerebellar fits

Postby prism » Sat Jun 16, 2007 10:23 pm

Hi,

I have to read things several times before I begin to understand, but I had heard of drop attacks before- when I was having a lot of "NES" it was one of the things that made being understood difficult, because I seemed to be having both at different times.

I think that what they are now terming cerebellar fits here- are what's in the picture and yeah, that's kind of what would happen, only in the position, I would sometimes shake violently at the same time or at least one side of me would.

Drop attacks on the other hand- I'm partly guessing, but I thought maybe that's what I experience when I fall suddenly, and then I 'regain' abilities after a couple of minutes.

But I'm filling in a lot of GapS here. Don't really know much of anything except that all of the above is @*#($@ really noT fun.

Worse though for me was often after falling was frequently not being able to call for help or find my limbs to move them. For a long time there, I'd be stuck for at least an hour, alone. I tried wearing a whistle around my neck but even that, you have to find and pick up and blow.

It's so much better now, even with the set back this last week. So, I have a lot to be thankful about.
These articles give me new insights though, even if it confusing.

If anybody else has these things or knows anything and wants to share, I'll be thankful for that too. :wink: prism
prism
 

Postby mac » Sat Jun 16, 2007 10:41 pm

Prism, I forget, if you've said what your doctors say about the drop attacks (and from all I've read here, that is one of the things you are experiencing...others would know better, of course)?

I wanted to mention that drop attacks are one of the red flag sx of brainstem compression, including retroflexed odontoid. I know you are doin some research so you might look at that and then check out your MRIs to see what you think. It doesn't hurt a bit to do this..because I did, it led in a back door way to getting my true dx.

Are you still driving? This would concern me for your safety and others, if you are having these cerebellar fits and/or drop attacks.

thank you for educating me today, I'm glad I learned something.

mac
mac
 

drop attacks

Postby prism » Sun Jun 17, 2007 12:25 am

Hi Mac,

No, I don't know for sure that drop attacks are what I'm experiencing. No doctor has helped me with this.
The "seizures' were addressed and no one that I saw really wanted to help me further. With my history, they naturally think I'm a freak because of past trauma.
But as to the driving, no, I can't. I had my first seizure or fit' in a medical facility and lost my license last year. It makes life really difficult. My h- won't even let me drive our gravel road- (private road) and I certainly can't waLk up the road.... realistically though, I don't feel safe driving, so it is what it is.
Not to worry :wink: prism
prism
 

Postby hayla2 » Sun Jun 17, 2007 8:14 am

My son has drop attacks. And he describes it as just falling all of a sudden. No symptoms before or after. He has all the outward symptoms of cm but the MRI supposedly says no. EEG is clear too. Not sure what is going on. Melissa
Oh my brain! It is too big to be contained, yet too little to hold a memory. Hehehehehe
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drop attacks

Postby prism » Sun Jun 17, 2007 2:36 pm

Yes, this is how I understood the classic drop attack to present. I'm sorry you are still confused about the reason for your son's having these. How frustrating and disturbing as a parent!

On a lighter note, I am just Not classic in any sense of the word~ :roll:
.. you take what you get ...
my h- likes to sing to me, "my baby, she can be all four seasons in one day..." prism
prism
 

Postby Littlepixie1981 » Mon Jun 18, 2007 3:59 am

Hi everyone

I have been having drop attacks for about 5 years now. Sometimes i will get, palpitations, sweaty palms,lightheadedness and just generally a feeling that i cant hold myself up any longer. My attacks can last anywhere from a few mins to as long as 20 mins, during which time the only way i am able to communicate is through squeezing a persons hand, i can always hear during these attacks so i am not unconscious.

I do suffer from Atrial Tachycardia and low blood pressure.

I am sorry to hear so many of you are having these too, they are horrible.

Lydia x
England
cm (no decompression yet)
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treatment

Postby razzle51 » Mon Jun 18, 2007 8:42 am

was interested in this so did some searching and for there are treatments for drop attacks:
TREATMENT OF DROP ATTACKS

Drop attacks are very serious as they often result in falls and breakage of bones. Treatment is individualized according to the diagnosis. Because in many instances, no diagnosis is established, no treatment may be advocated.

Cause of Drop Attack -- Most effective treatment
Cardiac disorders - - Medication or pacemaker
Seizures ------ Anticonvulsant
Poor blood flow to brain (TIA) ----- Lower cholesterol, blood thinners, surgery on arteries to open them up.
Superior canal Dehiscence--- Plug or patch superior canal.
Meniere's disease---- Surgery or medication to destroy labyrinth
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Postby specialmomx2 » Mon Jun 18, 2007 9:11 am

Seizures: Don't even get me started. My "seizures" have ruined my life.

I had the first one on 7/7/06. I worked one day since.

I was diagnosed with Epilepsy. I had two abnormal EEGs. But the drugs never did a darn thing, except put me in the hospital with various side effects or complications. One drug (Lyrica) caused these fits to become so bad, that I had a series of episodes which lasted all afternoon (after a full moring of prodrome). I'm talking hours of violent tonic-clonic type activity, but I was fully concious. It was an absolute nightmare.

I underwent a Video EEG and the epilepsy diagnosis was disputed. I have gone through the whole "you're nuts" thing. However, when I ask intelligent and pointed questions, the other side's arguements crumble. but they resolutely stick to them nonetheless. If they can't solve the problem, they blame the victim.

Now I am being pressured to see a third epileptologist. I guess kind of like a deciding vote on the abnormal EEG issue. I have declined this kind offer. I am heartily sick of epileptologists. In my experience and opinion: They are not quite fully human.

I don't have an ACM. I have been through TCI. I had an ICT and the result was negative (no brainstem compression). TCI and most NS-s (2 others) blame my problems on "epilepsy". The epileptologists say I don't have epilepsy and that I am nuts. No-one wants to help me.

From the beginning, I noted a link between food and my "fits". (which the neuro-everythings either said was not significant, or else was "proof" that I had some deep-rooted psychological issue with food!).

My worst attacks happen after I eat. Certain foods will trigger them. I noted that I follow a very strict no-carb diet, they disappear almost entirely -except around a certain time of the month.

So I went to see an endocrinologist and underwent a glucose tolerence test, which I failed miserably. I was diagnosed with reactive hypoglycemia. I am following a diet designed to help hypoglycemics and it is helping, although I am noticing some odd patterns, like I feel worst when my sugar is going *up*. Not when it is dropping.

The endo. observed one of my "fits" and described it as "carpo-pedal spasm". He told me that these are usually caused by low blood calcium, and indeed, remembering and reading back over hospital records, low blood calcium was raised as an issue, but never to me (other than to tell me to take a supplement).

So I am thinking that hypoglycemia is probably not my primary problem. I am thinking that the hypo. is secondary to *something*. My research is leading me towards some kind of GI problem, possibly a blown-out pyloric valve due to my old pal: EDS.

"Gastric dumping syndrome" seems to fit a lot of my SX pretty much exactly. However this will be a tough sell to the medical community, and difficult to get the test performed because the current perception seems to be that only people who have had gastric surgery will have this syndrome. I have never had gastric surgery.

<sigh> I get very tired of fighting, sometimes. I am hoping my rheumy, who knows EDS and has been a teriffic help to me, will refer me.

So that is my story. It is may be a unique one. I know I am very, very atypical. I am atypical even here and on the EDS board. I am not fully sure why. But there is one fact of which I am totally sure:

I am not crazy.

-Paula
"idiopathic" SM T3-T5 taking 50% of available space. Ehlers-Danlos Syndrome, Cervical stenosis, DDD, metabolic issues including reactive hypoglycemia.

check out my blog: www.onesickmother.com
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Postby specialmomx2 » Mon Jun 18, 2007 12:04 pm

Prism,

I just wanted to add that there are several physiological causes of non-epileptic seizures. You may want to google some things:

hypoglycemia (low blood sugar)
hypocalcemia (low blood calcium)
Hypomagnesemia (low blood magnesium)

I think low potassium can do it also, but don't quote me on that.

Try Googling some of these terms with the Euro spelling too (i.e."caemia" instead of "cemia" ), you might get better info.

-Paula
"idiopathic" SM T3-T5 taking 50% of available space. Ehlers-Danlos Syndrome, Cervical stenosis, DDD, metabolic issues including reactive hypoglycemia.

check out my blog: www.onesickmother.com
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(sigh)

Postby prism » Mon Jun 18, 2007 4:25 pm

oh Paula,

Your story sounds a lot like mine. I'm not going to cry though, I'm going to be relieved that I'm not alone. And, like you, not crazy! 8)

Just unique.

like a ~prism~
prism
 


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