*Frustrated!* Things are getting worse...

[moonchild1970]

I guess I cannot see my Neuro until Oct 7th. My regular DR has offered to start me on meds but I wasn't sure if I should wait for neuro appt to get on something as a Neuro would probably know more, right?

Well things are getting worse. Seizures are almost everyday now. Sometimes more than once!! The seizures are different and I have so any Q's!!

Some times like in the beginning I would see lights then pass out and my hubby would see my seizing. But he denies it is a tonic clonic as I am not flinging myself about violently off the bed.

The other kinds of seizures I have are:

Once, in the middle of the night once I was lying there, drifting into sleep and suddenly saw a HUGE bright light thing up close blinding me, then felt this huge weight pressing me down and then suddenly, I couldn't breathe!!
I almost ran out of breath before it was over. I don't think it was very long but somewhere in the time when I went to sleep at 1:30am and when I was able to read the clock after this happened. 1:44pm.

MY FEAR: will I stop breathing during one of these for good?

The other kind of seizure I am awake for. I get dizzy and see lights. Sometimes that is it but then after I am confused. Thoughts are crazy. I have had one during the day in car and in shower.

Anyone have these?? Should I just go see my regular DR and get on something now before OCt 7th when I see the Neuro?? To date I have had a CT scan and an EEG.

 

[Meetz1064]

Wellllll, it's

up to you. GP's CAN prescribe AED's.....there are a number of members here who have their GPs actually manage their cases. They can't stand neuros, or whatever reason, so the GP deals with it.

Due to the fact that the seizures seem to be getting worse, I would go for the meds with the GP's help, and look into making some serious nutritional and lifestyle changes as well. Also start an E journal if you haven't already....it will help you track thing, and possibly find any triggers.

Then, once you go to the neurologist's office, you have a few building blocks to work with. He/she won't be angry......and if they are, then they're not a good fit, and have an ego complex. You pay their salary, remember, and it's perfectly aright for you to go doctor shopping and get more than one opinion.

I wish you luck in making your decision. If you'd like a list of what to put in that journal, let me know....I have a great list for that....

Take care,

Meetz
:rock:

 

[Nakamova]

Hey Moonchild --

If your regular doctor is up-to-speed with epilepsy and AEDs, then it may be worth starting on medication now to get some relief. Your doctor should know that you will be seeing your neuro in a month, and explain what medication he would prescribe and why.

Some of the sensations you describe -- the anxiety about breathing, the bright lights, etc. -- are typical of complex partials. Your husband is probably right that they are not tonic-clonics. (Tonic-clonics by definition are characterized by the muscle tensing that causes the body to fling about). But that doesn't mean they are any less traumatic or disturbing, especially when they seem to be escalating. For when you do get to see your neurologist, I recommend that you write down everything you can about your seizures (what happens, how often, and for how long), and also write down all the questions you have. Get your husband to go with you to the appointment, and take notes afterward.

Best,
Nakamova

 

[Bernard]

Sorry to hear that your seizure activity is getting worse. Here's my usual suggestions of things you can do while you are waiting for your neuro appointment: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

... I have had one during the day in car and in shower. ...

If you are experiencing uncontrolled seizures, it isn't safe (or legal) for you to be driving.

 

[moonchild1970]

Hubby does he driving now. I am so scared. These things are taking over my life.

 

[dfwtexas]

does your neuro know how bad your seizures are? I think with your seizures being so bad, you need to see a doctor now

 

[moonchild1970]

I was referred to a Neuro, but the earliest they can get me in is in Oct. On the 7th.

I called again yesterday and am now on a cancellation list. If anyone cancels I am to be called in sooner.

 

[RobinN]

I know when Rebecca's were happening 1-2 times each week, I was extremely worried.
After making nutritional changes, her seizure patterns changed dramatically. It wasn't a quick fix, but it has allowed her to go for longer than 4 months without a seizure.

I hope you find something to give you relief.

 

[Going Postal]

Personally i cant stand neuros. The GP should understand the basics of what can be done and what meds you should be started on. This will at least try and help you with controlling the seizures and let the neuro know(when you do see them) what works and what doesnt. Good Luck!