Hi, New here!

[Lorelei_fae]

To save time for you and me I cut and paste my background history into this post. It pretty much leads up to the point I'm at. Which isn't a good one. Have a good read and I'll meet you at the end:

I have had seizures since 2005 as far as I know or recognize them. I had no insurance to go to a doctor so I passed it off as Post Traumatic Stress (which I had been diagnosed with since I was 21). I had a great job in February of 08 but then began having increasing difficulty because of stress and anxiety dealing with the job. I couldn't remember things and I would forget words, saying or spelling or reading them, and couldn't carry a conversation because of great long pauses from myself or not understanding the other person. Then I began to have memory lapse, and time lapse issues - that's when I released it was a more serious issue. I thought it was due to the serious stress I was under and then I began to lose consciousness, or lapse into what I've learned are called sensory seizures. I thought I was going crazy and attributed it to the PTSD again. I told my doctor and he wanted me to quit working. So now I'm home. It wasn't until I was in the kitchen one morning, months after, going to get a cup for my coffee that I realized something was seriously wrong and it wasn't the PTSD. I couldn't remember where in my kitchen the coffee cups were. They did the testing and found that my EEG was abnormal, my MRI was normal, my sleep dep EEG was abnormal. Now I've been trying to get back to the Neurologist and I can't get back in to see them, I only had one visit and it was terrible. the whole neurology thing has been a nightmare. And things, after getting better through the help of my psychiatric doctor prescribing a higher dose of the medication I was taking anyway, they all of the sudden have taken a nose dive these last three weeks. I need help coping with all of this. I'm back at square one - the way I was when I left my job.

Ok, back again...So Being back at this place I was - I'm scared, I'm angry, I feel completely alone and so I've come here to reach out and say "Help! Does anyone else know how this feels?" Though I have good friends and a wonderful husband, I find myself hiding away, staying away from people as much as I can, and crying everyday. I'm afraid of there reactions to what I do or how I'll end up, because at this point I feel like my mental and physical self may not be able to take much more.

 

[skillefer]

Hi Lorelai. Welcome to CWE. I understand being scared and angry. My best piece of advice for you is to go find a neurologist that you are comfortable with and that will listen to you. Depending on where you live and what kind of healthcare is available, while you wait, start taking care of you. Keep a journal so that you can give the neuro as much info as possible. Here's what you might want to include.

1. Food and drink (what, when, and how much)
2. sleep (how much each night, and any naps)
3. Stress you are under (and I don't mean just emotional stress...I also mean physical stress such as flus or colds)
4. Any OTC meds you take for allergies, flus, colds, as well as any vitamins and herbal supplements.
5. Any medication you are on. (when you take and how much)
6. Odd feelings (odd sounds/tastes/smells/feelings/sights, migraines, etc...and how long they last and what you were doing just prior)
7. Loss of memory spells/loss on consciousness (when, how long, and what you were doing prior)


The reason you are doing this is so that your neuro can have as much info on your life as possible. Yes, it's detailed...and lots of people think it's a hassle to keep..but it can help your neuro and you by letting you be able to go back and see if there is a pattern..to see if there is anything that is triggering these memory spells. In the meantime...you might want to make some changes to your lifestyle...these can help your meds be more effective.

1. Eat 6 small healthy meals a day (By small, it should fit on a dessert/salad plate. by healthy, I mean that if you have a carb, you need to have a protein. )
2. Quit all fast food and prepackaged food (filled with chemicals that you might be sensitive to) (for the healthiest choices without going organic, shop the edges of the grocery store)
3. Get 7-7.5 hours sleep each night MINIMUM. (sleep deprivation can trigger seizures as well as cause weight gain and memory loss)
4. Quit all caffeine (no tea, coffee, mate, sodas, energy drinks...caffeine is a stimulant and can mess with meds. Also, you may have developed a sensitivity to it...)
5. No OTC cold medicines if all possible...(they can interact with meds...especially the antihistamines and decongestants. Decongestants tend to be stimulants..)
6. Find a healthy way to deal with stress (walk, jog, exercise, yoga, prayer, meditiation...drawing, painting, journaling, all of these are good) (Stress can trigger memory loss as well as seizures...so finding an healthy way to deal with stress is important.)

Doing the above steps is a proactive approach. A way to say that you are taking back control of your life and your body. no matter what the problem actually is, it will help you to feel better. Take charge girl. You are not your medical condition. When finding a doc, remember, they are there to help YOU. YOU pay them..so if they are rude or confusing because they are speaking medical gibberish, call them on it. Refuse to leave until you understand everything your doc is saying. When you go to the doc, have your hubby go with you if at all possible...and if not, then another family member or friend. Have a list of questions that you want to ask prepped ahead of time...and write down the docs answers. That way you don't forget a question you have. Any you never know, your hubby might come up with questions that you hadn't thought of. also, friends and relatives sometimes notice things that we don't.

Also, remember that there are many ways to treat epilepsy, if that is what you have. It's not just meds or nothing. The library here has soem great info on meds and alternative therapies. And remember that you aren't alone. Hope this helped.

PS= Feel free to ask questions, chime in, or just vent when needed. That's what we're here for.

 

[Nakamova]

Hi Lorelei --

I've found that dealing with the doctors, the insurance, and the medications can be worse than the seizures! There have been plenty of moments when I've been angry or frustrated or sad. I have a good friend who I talk to every few days, and a sister who calls every day -- very helpful in checking in on me and letting me vent as needed. Don't be afraid to tell your husband and friends what you're going through -- the more educated everyone around you is the better. Let your psychiatrist know that you need help too, and make sure to keep him or her in the loop about medications. If your neurologist is a nightmare (and mine has been at times), find another one, or be stubborn about making them accountable. There are a lot of stresses around epilepsy, so be good to yourself (and take note of the Skillefer's suggestions above)! Everyone here has gone through a version of what you're experiencing -- keep asking questions, this forum is a great source of comfort and information both.

I wish you well,
Nakamova

 

[flinnigan]

Hi Lorelei,

Welcome, just coming here is a big step in the right direction. We'll help you through. Hopefully you can get a new Dr. or like Nakamova said make him accountable. I've had two great Neuro's so I know they're out there. Spending time here will make you feel so much better. As for isolating yourself. I've done that also. At first I thought it was just the not working thing, but then I found myself not wanting to go places without my husband in case I had a seizure. Now he forces me to get out of the house and Its a good thing. Be strong this is not the end of your world just a change in it, you will get through it.