New here- possible drop/petit mal seizures

[sconesail]

Hi All,

I am new here and very happy to have found this formum.

Here is my story.

Three years ago, after recovering from a vicious strain of flu, I began fainting. In the beginning, it only happened 2 or 3 times a week. As time progressed, the fainting/falling steadily increased from a few times a week, then daily, then multiple times each day. I currently faint anywhere between 4 and 1O times each day.

Due to the chronic fainting, I had to stop working on my masters in education because I just couldn't get to class without fainting during the class. I also have had to rely on parents and friends for transportation. I am 3O.

I was originally diagnosed with Postural Orthostatic Hypotension/Neurocardiogenic syncope. (Basically, my blood pressure would plummet when standing causing me to fall to the floor.} The chronic fainting por falling has been going on for three years- I have seen 4 cardiologists- heart is ok. Several neurologists and so far very little has worked. I have had two regular EEGs and One 24 hour videotaped EEg. Unfortunately, most of my attacks occur when I am standing or sitting and we were unable to capture an episode on the EEG. I have spoken to my neurologist and we are trying to get a 24 hour ambulatory EEG done to see if that will show anything.

I am 3O years old. In addition to the chronic fainting problem, I also have severe intractable migraines/New Daily persistent headache. I have an implanted occipital nerve stimulator to control the headaches and allow medications to work. Headaches became chronic at age 17.

The main problem is the fact that very few people with dysautonomia faint/fall as much as I do. I have heard of drop seizures in small children, and some of it looks an awful lot like what happens to me.

So far, the only things that have helped this at all are C-Pap at night, used for mild sleep apnea, Klonopin, and IV's of Depakan given to break a really bad headache. We are not sure what the diagnosis it- it doesn't seem to fit into any category very well, but it could be petit mal/drop seizures. I know I am grasping at straws here, but I would love to hear from anyone about this problem.

Any ideas?

Pain free days,
sconesail

[Nakamova]

Hi sconesail, welcome to CWE!

Just out of curiosity, what meds are you on for the headaches? And have there been any side effects related to the occipital nerve stimulator? When was it implanted?

What are the chances of revisiting the POTS (Postural orthostatic tachycardia syndrome) diagnosis? It seems to to fit the facts so well, including the appearance of symptoms after a bad case of the flu. Did you try any of the POTS-related self-care changes (i.e. dietary and hydration changes, physical therapy and exercise)? If so, did they help at all?

I hope the ambulatory EEG generates results -- certainly with 4 to 10 drop attacks a day, there's a chance it will pick something up.

[sconesail]

Hi,

Thanks for the words of welcome.

I have done a great deal with the POTS diagnosis. I have seen several specialists, increased fluid and salt intake, and excersize daily. Nothing has really helped at all. Fluid helps some. I am taking Pristiq, florinef, and DDAVP for POTS- to little of no avail. My current cardiologist has told me that she has run out of ideas and she has never seen a POTS case that looked like this.

The occipital nerve stimulator was originally implanted in 2OO4, with revisions in 2OO5, 2OO7, and a complete replacement of two broken leads and a new battery in September 2O1O. I have not had any side effects. All revisions were done due to broken wires. The most recent surgery was due to the fact that I broke both wires when I hit my head during a fainting/falling episode. It does help the fainting.

As to migraine- I have New Daily Persistent Headache and have had that for 13 years now. I do take medication- Zanaflex at night, as needed tylenol 3 and Clonopin. None of these seem to have any effect on the fainting.

Things that have helped: CPAP at night (mild sleep apnea}, Depakote- usually given IV to break a bad headache. and that is about all.

Because these fainting spells are not improving, and I realize I am grasping at straws here, it is possible that this could be petit mal seizures- especially with the response to depakote and Clonopin. I have spoken with my neurologist and am waiting to hear from him.

I'd appreciate any other ideas or comments yyou may have.


Thanks,
sconesail

[Nakamova]

The act that the Depakote helps does seem to point towards a seizure disorder. I don't know if this is an option for you, but one non-medication treatment that helps with absence seizures is the Modified Atkins Diet or a gluten-free diet. If you are having any gut issues, it may be a sign that a dietary approach could help. The "Gut-Brain" connection is well-known, and malabsorption issues are linked with many neurological manifestations.

I assume the docs have tested for any autoimmune diseases/thyroid disorders/hormone imbalances -- all three can also play a role in triggering fainting and seizures.