Sorry I haven't replied any sooner. I don't get on the computer very often. I still need to look at Phylis' article - I'll go to it & print it out so I can read it as I'm able.
I thought about the triggers. I haven't had coffee or tea in over a month & go thru spells where I don't have any caffeine for weeks at a time, yet it doesn't seem to change these symptoms. I don't eat processed food as a general rule, I like homemade, salads mostly, with some meat & rice or potatoes. Simple food.
In Nov & Dec when I was having so many seizures & ended up with PCS, I was ordered not to be on the computer, not to watch tv, not to read, not to text, etc. I still greatly restrict these things as they hurt my eyes & my head hurts too much still.
When I'm in a vehicle, I always have to keep my eyes closed - I can't handle things flashing by.
I'm sure I have some other triggers so I'm interested in seeing what Phylis has to say in her article. If I can learn what they are & avoid them it will make life easier.
Yesterday, I went with my twin nieces to the city to go to the thrift stores. We haven't do that for a couple of years, since their mother, my sister, died. We had have been talking about doing this for the last 6 months & we had so much fun. But twice on the way up there, I felt that forward falling feeling within a 10 min span. I hadn't had any caffeine, just some dry cereal & water (I'm lactose intolerant) & I was keeping my eyes closed while we were talking except when I was looking directly at one of them. Nothing should have triggered a seizure.
I don't know if my meds were working on all the seizures before like I thought they were. Don't get me wrong - they work great for the ones that were sending me to the floor 2 times a week for about 2 1/2 months. Just not for all types of seizures.
You know how you can fool yourself into believing one thing & someone else can look at you & see something different? That's the way it is here. One day the supervisor of the health service I receive came to interview me & she asked me questions. I started to answer them one way but my home aide, in the kitchen, yelled out a different answer. Of course, I had to admit that she was right - she sees things as they are whereas I see things as I want them to be. Thus the topic of my discussion.
Ok, Candi, I've come back to this several times & I need to get it off to you. I'' try to look up Phylis' article the next time I'm online. I'm sure I'll learn something from her. I always learn something from you, too. Take care, my friend.
Thanks, Candi, I knew you would be able to give me some idea on this. As you know, I always do my research when I have questions, so I was pretty sure that juvenile myoclonic seizures were what my home health aide was talking about when I looked it up.
It wouldn't really surprise me if that is added to my seizures because I was told earlier that I have myoclonic seizures, but to get narrowed down to specifically juvenile myoclonic epilepsy would be something else. From what I've been reading today, it seems that JME will produce other types of seizures, starting with absence seizures as a young child, such as I had.
JME doesn't cover all the types of seizures I have & I could easily live with the diagnosis of plain & simple "Epilepsy", but it would be interesting to find out if it could be narrowed down to JME & if it is, see if the other seizures could still be stemming from it. But, I'm not going to claim it until I talk to my neuro!
28 new meds ready to be developed, huh? That's great for those of us who aren't able to tolerate the available now. If it ends up that I have JME, I will need a new drug because I can't take the ones that are used for treating it, at least the one that is listed as being used to treat it - Depakote.
I've been so excited since the beginning of the year with a change in neuro & meds bringing one bad type of seizure under control finally & it seems that it helped with the symptoms I mentioned above for a few months.
I didn't even realize I was getting bad again until a couple of months ago. I kept feeling the oddest sensation, like someone had put their hands on my upper back & shoved me forward - I felt the weight & I would start to fall forward & then catch myself to sit back upright. I guess I was having a seizure, starting to fall asleep & being in that semi-conscious state I mentioned. It would happen anywhere - at the computer or while drinking a cup of coffee or while eating. And then the spells of paralysis hit again.
Well, I have more to research so I can be prepared when I see my neuro in a couple of months. Always much more to learn. Hugs!
Last year I was having some trouble with my legs, feeling like they were going to collapse under me. I never really gave it much thought, just chalked it up to the muscular problems I have. I will walk & my legs will just give out under me.
I have also had sporadic paralysis for the last 27 years which I chalked up to a fall, but no doctor has been able to find any pinched nerve. I remain in extreme pain.
Over the years I kept falling asleep, but I was checked & cleared of any sleep disorder. I can feel myself going out - I often remain in a semi-conscious state.
Anyway, my home health aid said this morning that she has a friend who has exactly the same symptoms & she has a type of seizure. She couldn't remember the name of it but said it was "juvenile something". When I looked up the info on seizures again, I found the juvenile myoclonic seizures.
It makes sense that this could be what I am dealing with as well, since I've had this since childhood. But of course, I would need to discuss this with my neuro to see what he thinks.
My pharmacy is great about giving me a few days supply to get thru, too. One of my meds is a "controlled substance" & my neuro's office had just started using a new computer program & it was recognizing me as a patient. So not only was I having trouble getting my other 2 seizure meds prescribed, I needed to get my med that was a controlled substance refilled & his office is about an hour away. After a week of finally finding out what the problem was, it was decided for the pharmacy to go ahead & accept the controlled substance Rx this one time - then they didn't have any in stock & I had to get it at a different pharmacy! I have a good pharmacy & pharmacist.
Your right about taking a snack with me - I should take something. I'll keep it in mind. Thanks
I do keep the pillbox in sight. In fact, the only other thing on that countertop is a little cooking utensil holder that is right against the stove. My billbox is right is the center of the countertop. I guess I just get tired or distracted. But I'll be back on track now. I'm doing very well & don't want to go back to where I was last winter!
Yes, change can be for the better. I'm glad you have found to be so in your case as well.
I've also had a pill box too since the 90's. But despite having my pill box sitting on the countertop beside the kitchen stove where I have to pass it every time I walk in & out of the kitchen, I still forget my meds sometimes.
I have a "galley" kitchen & can't go anywhere in the kitchen without passing my meds - getting a drink, fixing a meal, taking care of my cats (their things are in the pantry beyond the kitchen), get cleaning supplies, anything.
I think one of the problem comes when I have to leave the house early without eating - I need to eat for some of my meds - so by the time I come home I've forgotten about eating because I get busy with other things & my meds are forgotten as well.
Then at night, the forgetfulness occurs because I'm busy with the nightly routine - taking care of the cats, starting the dishwasher, setting the coffee maker, etc., & I can be so, so tired that I can walk right by the pill box without realizing I forgot to take my meds.
What a mess,right??? Well, it shouldn't be a problem now that I've put the alarm on my phone.
Do you have trouble with the pharmacy not having your seizure meds in stock? I keep running into that. They told me that there aren't that many people around here that use some of my seizure meds & I end up not being able to refill my script. I have solved that problem by ordering my refills a week before I run out. I can't refill them any sooner than that because of insurance.
Anyway, I'm headed in the right direction with taking my meds all the time now. You have some good suggestions too. Thanks.
I saw my ENT Fri morning. He said I still have a little drainage in my ear, but everything else looks good now. He suggested using 2 drops of a white vinegar & rubbing alcohol mixture 2 times a day for 2 days. He said it hurts a little, but it is natural & restores the balance of the ear, less risk of any problems that a med might cause. I don't use anything in my ear that he doesn't tell me to use. I have a hole left from an ear tube years ago that never closed. I'm not supposed to get any water in my ear because it would become easily infected & everything he has prescribed for me to use for me ear I haven't been able to us. He could patch it, or seal it, but then I would start having severe pressure in my ears again & we opted not to do that. I just have to be extra careful, I guess.
He also changed my sinus/allergy med this time. I've been on Rx strength Zytec for a few years & it just doesn't cut it any more. While I may look clear, I still feel stuffed up deeper inside. But the one he prescribed isn't covered by my insurance, so I need to call him Mon & ask him to change it the one that is covered.
As for driving, I'm sure I will get my confidence back. The biggest thing is getting of these headaches for good so I can drive on a regular basis, not so sporadically. (And I agree - there are too many crazies out there!)View Thread
I feel the same way, Candi. I prefer shotgun as well. I hope I will get my confidence back, but if I not, I'll be okay with short distances, slow speeds & driving only when absolutely necessary. I have driven to the doctor a few times when my aide hasn't been able to take me & to the store a few times - I just don't like to drive yet. Driving just doesn't feel right now.
I've been horribly sick for the last 3 weeks with a sinus infection that went into my ears last week. It is messing me up. I have forgotten to take my meds 5 times in the last week I can't risk doing that now that I have a med combo that works! I told my husband & my aide that they need to keep after me to make sure I've taken them each time, plus I've set my phone alarm to go off when I'm supposed to take them, so I'm not going to miss them any more.
I hope everyone has the strength to make a needed change because it means our lives & makes a world of difference in how we feel. Sometimes we just put up with the wrong doc or med for too long. It sure feels good to get on the right track!
I am so glad to be back & so glad I am doing better! I started a reply this morning, but someone else started using the computer & my reply got lost - I think. So if you get 2 replies you will know what happened
I'm very glad I decided to get a new neuro. He has been very compassionate & listens to me & treats me with great respect & I return that respect.
I started on the Trileptal on Jan. 2nd. I had improvements quickly. My seizures dropped to once a week in Jan & by Feb, I was down to one a month. The one I mentioned above was in March & I haven't had any since then. I keep my journal, notating what the seizures were like & he questioned me thoroughly, even asking about how that one compared to similar ones in the past. I told him how bad the simple partial "memory" one was, how in the past I couldn't even remember how to fold a pair of socks in half. It's been wonderful not having any since then.
I've started driving again. It's like learning to drive at 16, only worse. At 16, I was eager to drive. Now, I'm still uncertain of myself, perhaps overly cautious. My husband is also worried about me driving at highway speed, so I haven't even tried that yet. I'll do it soon. I just need to get my confidence back.
As far as the PCS, the recovery period is different for everyone. Recovery is longer for women, for people who have neurological problems, and for people who have psychological problems. That means I have 3 strikes against me because I am a woman, I have epilepsy, and I have bipolar I, rapid cycle bipolar, PTSD, OCD, and anxiety disorder. So it can take a year or years to recover. The good thing is I was diagnosed immediately & have been following my doctor's orders pretty close, which shows by the fact that my headaches are lessening.
So, I'm keeping my smile on & hoping everyone else is finding success as well.
The med I requested to try with my other seizure meds is Trileptal. I was put on it back in '05 because Depakote caused me to have such horrible tremors that I couldn't hold a piece of paper, write or eat without spilling my food. It took 2 years to get me back to "normal", but then I lost my health insurance & couldn't afford any meds, so I weaned myself off of it & everything else in '07. A couple of years later (late '09 - early '10) when I got my insurance back, my PCP said she thought I was having seizures & sent me to the local neuro who disagreed with her (despite my documented history) until he got my EEG results back. I fought with him for far too long. It just isn't right when your doc doesn't listen to you.
I used to have absence seizures as a toddler, but now I have the partial seizures & this memory seizure is a simple partial. I've actually had this type of seizure since before my husband & I were married, but I didn't know they were seizures until recent years, plus I hid it from everyone - even him. I'd forget how to fold laundry, how to make a jug of tea, I'd forget how to get places or home - when I was the driver & others were in the car, I hid my memory lapse by asking what way they wanted to go. Once I didn't know my home after I walked in & just turned around, grabbed my husband & cried - at that time neither of us knew it was a seizure. (I thought my 1st neuro was good, but he never told me anything about my seizures. My 2nd neuro wasn't helpful. I've had to educate myself, with the help of friends here.) I don't hide it any more. It's very scary & frustrating to suddenly lose all knowledge & memory of how to do something or go somewhere. I am so, so thankful that my combo of meds is working & controlling my seizures.
Thanks for your words about my PCS. It is getting better, finally. It will still be a little while, but at least I'm on the mends! And I'm glad your meds got straightened out so you could get settled back in at work. Let's hope that both our docs stay as good as they are now - we have had enough of the bad ones, right? Take care.