Monday, January 11, 2010

Happy New Year!

I haven't been blogging much lately because I've been focusing on my health, but I thought I'd come out of my cave and say hello.

I've had a rough time adjusting to the new antiseizure medications (feeling sleepy, dizziness, headaches, nausea, etc.); however, I'm hanging in there!

My neurologist knows that people with CFIDS are often more sensitive to medications than other people (and he knows that I am particularly sensitive to various medications), so he started me on lower doses of the antiseizure meds. This technique would allow more time for my body to adjust to the medications.

I am now on the maintenance doses of both antiseizure medications (as of Friday). The side effects of this level are starting to subside...I think. Well, at least they seem to be better today than they were yesterday.

On the upside, I've FINALLY been sleeping better thanks to a combination of the antiseizure medications and Ambien CR. My memory is starting to improve, and I'm thinking more clearly. Hooray!

I have been doing some digging, and I've discovered a few bits of interesting information related to my new epilepsy diagnosis (absence seizures).

First, I looked up absence seizures on the internet, and found that absence seizures are most common in children and usually do not start in adulthood (though my body has not followed the "getting sick" rules for years).

I also found multiple examples of what absence seizure activity looks like on an EEG (if you click on the above link and scroll down, you can see an example). Unfortunately, my EEG looks very much like the example EEGs I found. What was most striking to me was the following phrase on the Epilepsy Foundation website regarding absence seizures: "the absence attack is always associated with the strikingly typical EEG abnormality of spike and slow wave discharges, usually at a frequency of 3Hz."

Second, not long after my diagnosis a few weeks ago I remembered that I'd had a sleep study done in 2007. Part of a sleep study involves a night-long EEG. Conveniently, I had an appointment with my regular doctor just after I remembered this interesting tidbit and made sure to ask her about my sleep study results (which she had in her possession as part of my medical record).

Long story short: It turns out that the sleep lab did not mention any abnormalities in my EEG. (I should have known this would be the case, since I obviously would have been notified at that time if there had been any EEG abnormalities.)

I have come up with a few different scenarios as a result of all this information: (1) I developed epilepsy recently, (2) I do not have epilepsy and my recent EEG was a fluke, (3) I have had epilepsy since childhood but the first EEG did not catch seizure activity, (4) the seizures are a new symptom of my CFIDS.

I don't know which scenario is correct, but I'm sure I'll learn in time. I just want to be well!

Today's Activities: home. Today's Most Annoying Symptoms: headache, sore throat, upper back pain, air hunger.

Mood (10 is best): 5
Energy Range (10 is best): 1-3
Physical Discomfort (10 is worst): 6

P.S. Happy New Year!


Jo said...

This all sounds very interesting and promising. I hope you continue to improve on the new meds. I wondered how you were getting on.

A happy new year to you too!

Sue Jackson said...

I'm glad to hear you are sleeping better and improving. I hope that trend continues!


Dominique said...

Have you ever considered that one of the medications is causing the seizures? I developed seizures for about 4 years after I had, had CFIDS for about 5 or 6 years (I think) and it was related to medication I was taking. Anti-depression medicine if I recall correctly. Anyway, it was a side affect to the medication I was never told about. When they add more anti-seizure medication, I developed another form of seizures. It was a mess.

I eventually got healed of the seizures all together so I don't have them anymore but it was a very challenging time.

I'm glad your are feeling better! Hang in there!

BTW, I have placed a link to your blog on my blog.

Janis said...

Hi Alison,
I was reading this on the Ch3 forum and thought it would interest you.

"There is also recent literature that would suggest that chronic inflammatory factors may play a role in seizure activity
( ), where you mention strep, I continue to think that aluminum in his system may be driving seizure activity, perhaps along with an immune related mechanism that is described in this recent paper. Long term it may be that the monocyte support formula along with the nerve calm and rest of glutamate/gaba balancers that you have in place may be helpful. I also suspect that when you are able to support for more aluminum excretion that we may get at some of the underlying causes of the seizure activity. I do think that keeping copper and zinc in balance is important and again, I would look at molybdenum and carnosine levels to see if you can add in that support to help with copper. While EDTA may also be very useful for the copper, it may also trigger some aluminum excretion so it may be best to wait on any EDTA."

upnorth said...

I hope you're doing OK Alyson. Haven't heard from you lately.

Anonymous said...

I'm wondering how you are... I hope you are okay.

Rachel M

Laurel said...

Hey, Alyson... was thinking of you and hope you are doing better. Are you back at work or still trying to bounce back? Hope things are improving...

alyson said...

Thank you all for thinking of me!