Although I have not been given the number of my ataxia I have been diagnosed with Myoclonic dystonic ataxia and with it I have episodes that are seizures but I am somewhat consciousness. Full blown emergency room seizures lasting up to 3 hours. Sometimes I loose I have difficulty breathing and pass out.
Has anyone experienced this?
I went through something like that and you may be the first person I have met that understands what it is like! I had a serious stroke like brain injury May of 2008 and about 2 months after I started to have these massive events like you describe.
I would have massive whole body movements with flailing arms and legs and back arched and I landed on the ground, I couldn't see, couldn't talk, breathing laboured and outside my control and kind of like panting. It would last anywhere from 45 minutes to 4 hours. I never lost consciousness and had a foggy idea of who all was saying what. The spasms and pounding were painful and I wound up with a ton of bruises and dislocated shoulders, hairline fractures etc. Shear luck that I didn't break my legs or neck. Scary as all get out being aware while it was happening!
I did not show up with epilepsy on an EEG so was sent to a movement disorder specialist who never looked at my files and did not even realize I had a brain injury. He referred me to a psychologist as having a bad reaction to stress (I had a uterine tumor compounding things). The only other suggestion I got was that I might be having some unusual form of basular migraines tied in with stroke damage.
That would be about when I joined this group looking for answers.
In my case things have for the most part resolved -- probably related to healing from the brain injury but it could also have had something to do with ending a hormone based cancer treatment.
Initially, 2 months after the brain injury, so July, I had about 4 episodes, by December I was having as many as 4 a day with 44 in the month and by the following July it dropped to about 7 in the month. Now I tend to react to loud noises, certain pitches, certain lights. I get a startle reaction like a baby does and arms fly up and I loose my balance and shake, but at least it is gone within minutes most of the time. Not so good when it is something like a car horn when I am crossing a street though!
I have left side weakness from the brain injury with brain stem issues related to balance and body control of things like blood pressure and temperature regulation. I have some twitchiness and I have to be very careful not to get overtired.
I very much look forward to hearing what others have to say on the topic!
Linda in WInnipeg
great post Lavender!
Oh my… This is exactly to the T, what I have experienced!! The only thing that can stop it is about 6 mg of Attavan, and 2 mg cogentin with.25mg of haldol. I have had about 5 days now w/ out one until last night. It was a medium one that I was able to control without passing out so no meds or ER. I am currently taking 3200mg nurontin, .25 haldol, using Attavan as a rescue drug. Yesterday I taxed myself with stress and went to the store in wheelchair it was too much. What meds do you take?
It is good that something helps you. How long have you had these episodes?
I am on nothing but blood pressure pills now.
They would not treat me with anything for the seizures except attavan on two occasions when they tried to do some imaging studies.
Most of the meds were contraindicated because of the other health issues.. I almost died from a pulmonary embolisim (blood cots in the lungs) and then hemorraged with the anticoagulants for the blood clots and basically stroked out. Had a massive life threatening reaction to demoral and then again to an antibiotic so none of the drugs were considered worth the risk in their opinion. There was concern about a risk of some of the anti seizure drugs interfering with healing after a stroke too.
During the worse of the "seizures" I was on massive hormone shots to try and treat the tumor, I was on warfarin because of the blood cots and and a couple of blood pressure meds, calcium. They tried me on the most common migraine med.. just in case.. and I vomited nonstop with those.
I am so sorry you went through so much Cindy, that’s terrible. I have been having the seizures since I came off the IV steroid 5 day treatment. All in all massive steroids for a month or so to treat the MS they thought I had. This all. Started in May.
Hi Lavender, Just when you thought that you have heard it all, up comes another disorder, no i have not heard of this one, hopefully you will find someone shortly that heard of this disorder, or has it themselves. Take care.
Thanks Roscoe… I think this group is going to be so helpful. Already I feel less alone with this new diagnosis. It’s funny, for years I have been calling it MS, even started a non profit that raises money via a festival we put on annually that donates to the that cause, NMSA. now telling my friends of the new diagnosis Ataxia, they are stumped. No one has heard of it. Yes, Im Loving this group and hope to share my story, my progress and my ability to raise awareness threw my avenues any way I can.
I am not aware about the name or kind. But, originally i was recommended for MRI scan because of seizure. In this type of seizure, my brain got confused & i became dis-oriented till i was drugged to forced to sleep. But i never got the seizure again. I was on treatment for this kind of seizure for about six months.
Amazing. So you just had the seizure one time? What drugs did they use to stop them?
i was on drug named LEVETIRACETAM - BRAND NAME - LEVEROXA - of Ranbaxy. My ataxia problem was then only diagnosed.
hi Linda!
Have you heard of something called Stiff Person Syndrome? Used to be called Stiff Man syndrome or Moersh Waltman.
Some of the things you describe fit this exactly - particularly the startle reflex and the spasms etc. I’m being tested for this and am waiting for a lumbar puncture result. Look it up and see what you think.
There are support groups for this and you might find these will tell you more.
Good luck,
FeelingOurWay
I went through something like that and you may be the first person I have met that understands what it is like! I had a serious stroke like brain injury May of 2008 and about 2 months after I started to have these massive events like you describe.
I would have massive whole body movements with flailing arms and legs and back arched and I landed on the ground, I couldn't see, couldn't talk, breathing laboured and outside my control and kind of like panting. It would last anywhere from 45 minutes to 4 hours. I never lost consciousness and had a foggy idea of who all was saying what. The spasms and pounding were painful and I wound up with a ton of bruises and dislocated shoulders, hairline fractures etc. Shear luck that I didn't break my legs or neck. Scary as all get out being aware while it was happening!
I did not show up with epilepsy on an EEG so was sent to a movement disorder specialist who never looked at my files and did not even realize I had a brain injury. He referred me to a psychologist as having a bad reaction to stress (I had a uterine tumor compounding things). The only other suggestion I got was that I might be having some unusual form of basular migraines tied in with stroke damage.
That would be about when I joined this group looking for answers.
In my case things have for the most part resolved -- probably related to healing from the brain injury but it could also have had something to do with ending a hormone based cancer treatment.
Initially, 2 months after the brain injury, so July, I had about 4 episodes, by December I was having as many as 4 a day with 44 in the month and by the following July it dropped to about 7 in the month. Now I tend to react to loud noises, certain pitches, certain lights. I get a startle reaction like a baby does and arms fly up and I loose my balance and shake, but at least it is gone within minutes most of the time. Not so good when it is something like a car horn when I am crossing a street though!
I have left side weakness from the brain injury with brain stem issues related to balance and body control of things like blood pressure and temperature regulation. I have some twitchiness and I have to be very careful not to get overtired.
I very much look forward to hearing what others have to say on the topic!
Linda in WInnipeg
I have Ataxia with Dystonia, Myoclonic jerks, Choreaoathetosis, and some Parkinsonism. They now want to call it "Complex Movement Disorders".
My main concern immediately would be checking for Hypoparathyroidism (HPTH) instead. Does the breathing problem feel like your throat airways tightening up during the attacks? It can cause spasms and seizure like attacks. If you haven't had it done recently, get your Calcium and Phosphate levels checked, and parathyroid hormone (you might have low calcium, high phosphate, and these may indicate hypoparathyroidism or HPTH). If admitted to Hospital again, get your Calcium levels and Phosphate checked urgently - they can miss it - if it is HPTH, a calcium injection or drip would stop the attack.
Read the HPTH stories of Sarah and Bridget on this page. Sound familiar?
http://hpth.org.uk/hpth.php?id=204
Brief intro to HPTH:
http://en.wikipedia.org/wiki/Hypoparathyroidism
If these sound like your attacks, there is a way to test for this right now, simply by tapping your cheek. To do this: open your mouth slightly and relax your jaw. Use the tip of your fingers to tap on the area just in front of your ear, onto the muscle on your cheek (as per two videos below). Do you get a twitching spasm like this around the mouth? This is called "Chvostek's Sign", and indicates low Calcium, and goes with Hypoparathyroidism.
2 examples of Chvostek's Sign on You Tube, so you can see what it's like:
http://www.youtube.com/watch?v=DWbG-aRZ_ZM
http://www.youtube.com/watch?v=XjtHDhNcXEQ
Other tests, for Magnesium and Vitamin D deficiencies, and kidney function, heart function, and others might be needed, as there are many causes and effects of HPTH. Generally, after diagnosis, the treatment would be Calcium supplements with Vitamin D.
Yours,
Abigail
Multiple Sclerosis can cause funny mixtures of symptoms. Have they actually proven the MS by tests? I'm just wondering if you have any other type of autoimmune disease, with antibodies against thyroid and/or parathyroid glands. You could ask Dr. Perlman about all this. I'd be surprised if she'd missed any of this, as she has a very good reputation, but even the best aren't perfect and things do get missed sometimes, so it's worth asking and getting HPTH and other autoimmune possibilities checked out.
As for other causes, are you on any medications which have any of these symptoms as side-effects?
Wilson's Disease has been known to cause HPTH, and can cause ataxia, dystonia, myoclonus and seizures, and many more. So do you have any copper rings around the outer edge of the iris, as per the picture on the Wikipedia link below? And has a Doctor done a blood test to check your Copper and Ceruloplasmin levels? Even if the copper rings are missing, and your MRI were negative, still get the blood tests done to make doubly sure. See:
http://en.wikipedia.org/wiki/Wilson's_disease
"Myoclonus Dystonia" (DYT11) itself has occasionally been found to have Ataxia and even Seizures as symptoms, but this is somewhat rare.
DYT9 is also described as an episodic ataxia. See end of page 1 and start of page 2 here:
http://www.ataxia.org/pdf/episodic%20updated%202007.pdf
Dopa-Responsive Dystonia (DYT5, especially BH4 subtype) and SCA14 have both presented as Myoclonus-Dystonia with Ataxia and Seizures.
Finally, DYT18 is due to a problem with Glucose crossing the blood-brain barrier leading to low blood-sugar, causing a huge number of possible symptoms. A Lumbar Puncture and a blood test to compare the Glucose levels in the CSF with the blood can diagnose this, and lead to gene testing for GLUT1-DS2, which includes Dystonia 18, with or without Epilepsy.
Finally, some would say there is a link between HPTH and Parkinsonism, which might cause Dystonic like rigidity.
Hoping something here might sound familiar and be helpful.
Yours,
Abigail
Oh my! Everything here sound familiar. Thank for the depth of your pst Abby ( my daughters name s Abbey). I have had 9 months of testing to rule out other typed of auto Imune disease but you mentioned a few tests that have not been done. Dr Perlman is sure it is a genetic form and my genetic test should be done this week.
I am taking 4000 mg of nuerontin with 8 mg of cogentin daily with Atavan as a rescue drug. All of these have side affects much like ataxia would show however we have successfully slowed the rate of my seizures which are actually called episodes to 2-3 per week instead of multiple times a day. It’s all just so unclear.
I’m going to email Dr. Perlman now with your suggestions. Ill keep you posted.