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Good news - finally
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sbncmo posted:
Hello Everyone!

It has been a long time since I have been here. I went thru a very difficult spell before I climbed out of the hole I was in. Let me share my story.

During the end of Oct., for some reason I started having major seizures. I was walking down the hallway at home & I remember thinking I felt like something was wrong. The next thing I knew was I was laying on the floor with a busted face. The EMT's & the doctor in the ER, said I'd had a seizure & I ended up with a broken nose & a concussion. From then until the beginning of Jan., I was hitting the floor or other objects 2-3 times a week without knowing it, just finding the aftereffects & my neuro just some mumbled words as he wrote something in my records & said there wasn't anything else he could do.

That's when I asked about getting a second opinion, saying that as professional he should be willing to send me to another ep-neuro to get his thoughts. He agreed, but when I choose a doctor different from the one he wanted me to see, he dropped me like a rock, wouldn't even refill my meds despite the fact that I wouldn't see the new neuro for 2 months. He became quite unprofessional. Seeking a second opinion, in my mind, meant finding someone who wouldn't be working with him already, sharing his thoughts already. Seeking a second opinion means finding someone who is unbiased.

When I met my new neuro, first he did a nerve conduction test/EMG, then the EEG, then we talked about meds. We talked about the ones I've taken in the past & how I handled them, then the ones I'm on already & how they are working. I told him how I was having 2-3 seizures every week even with the 2 seizure meds I was on. So he started running thru the past meds again, the ones I have on my allergy sheet & I interrupted him & said those are all the ones I can't take, what about something that I can take that isn't on that list? So we started thinking of seizure meds that weren't on the list & I recalled one that had stopped seizures before & said I'd like to try it again. He said it can damage the liver, but we can monitor that if I'm willing to try it. So I'm on it along with the two I was already taking & my seizures have dropped to almost none! It's great!!

One of the seizures I had after I started the new med was frustrating, but I had to laugh to keep from crying. We had gone out to eat & when the food came, I couldn't remember how to pick up my silverware! I started laughing, leaned over to my husband, told him & he said to just pick it up. I told him I didn't know how. After 1-2 min, I picked them up, but I still couldn't use them to cut my food! Laughing, I told my husband again. He isn't used to this type of seizure like I am, didn't understand how I couldn't remember, so again, he told me to just do it. After another 2-3 min. I remembered & was fine. I had to really teach him about it later.

I have quite a bit of trouble right now from the multiple concussions - Post Concussion Syndrome. MAJOR headache most of the time & a great deal of trouble with light & sound or trying to type or read or doing almost anything. My doc said it will take months to recover & that is also what the PCS website says - it's been 8 months already & I'm more than ready for the PCS to be gone! I've had to limit computer usage & everyone probably knows how hard that is.

Anyway, I'm glad to be back & share my success with all of you.

Shelia
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jenbayly17 responded:
Shelia
It sounds like you had to go through a lot lately, which I am sorry you had to experience. I am curious to know if you don't mind what meds you are on that can cause problems for your liver. I know Tegretol xr is one that does that because I was on it for a while and towards the end they wanted to monitor my liver as well. I liked tegretol xr for the control portion it helped me for years with, but it started to affect my sodium is why I had to let it go. I switched doctors as well to get some more answers. I know that isn't the most fun thing to do, but sometimes it seems that if you have had any control of your seizures you become a number. because I had great control of mine for many years but when problems started to arise my previous doctor acted like it was not big deal because I didn't have seizures a lot. well the more negligent he was about it the worse things became. I am so glad you got another doctor that is working with you.
I hope the PCS makes it way out soon for you as well. computer restrictions are hard for anyone these days they are everywhere. I started back to work the 2nd week of june after being off for 6 weeks for med changes of my own and getting used to the computer and the stress was intimidating but it fell back into place for me.
Your seizure that you had where you mentioned not remembering how to use the silverware do you remember feeling confused about it? I used to have absence seizures when I was younger where I would say things to my mom but when I came out of it I could only remember bits and pieces at the beginning and just as I was coming out of it. But evidently I would talk more through them than I was ever aware. But my seizures now are complex partial seizures and my husband has been getting educated more about seizures in this last year and a half especially since I had changes going on.
I hope things continue to go well for you though and its always good to hear the successes, but when you are having things happen don't be a stranger
Jen
 
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dancer86442 responded:
Hi Shelia,

I am sooo Glad you replied to the email I sent you & that the Link worked to bring you back to us! And I am Very Glad you took the initiative to find your Own 'second Opinion'!

Suggestion: for the Light issues w/ comp or tv, ask around at tv/comp stores for a screen that blocks/ shades. And/or visit your optometrist for Prescription Polarized sunglasses!

Your new med may have triggered the episodes at the restaurant. New meds/doses can cause increased seizures till the system adjusts. How long have you been on them now & are they controlled, for the most part? IF Not, Personally, I would visit doc again & tell him: Times up! I need to change meds or increase dose of latest med! Did the PCS site mention How Many Months or is it an individuals thing?

Are you keeping up w/ your Daily Journal? I know Headaches are co-morbid to Seizure Disorders, but, there are triggers that your Journal may help you Find.


Lots of Hugs! And Thank You sooo much for sharing! Stick around & keep us in the Loop! Hugs


Love Candi
 
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saxofone1 responded:
Hi Sheila,

Welcome back!!!!!!!!!!

I think that was simply great of you to seek another opinion. Especially from someone that your then doc didn't know. To not be satisfied and go seek another opinion is a sign of stength that few have. Way to go girl!!!

Candi and Jen have already expressed my thoughts about the seizures/meds, etc.

You hang in there. Thanks for joining us again.

angie
 
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sbncmo replied to jenbayly17's response:
Hi Jen

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.


Shelia
 
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sbncmo replied to dancer86442's response:
Hi Candi,

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.

Hugs!
Shelia
 
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dancer86442 replied to sbncmo's response:
Good Morning Shelia,

Only see one post. So all is Good. We lost our moderator back in Dec. But, someone, I think, removes extra posts when reported.

No activity since March? Sounds Good to Me! I'm sure you are relieved, also.

Driving? I would stick to slow speeds & short distances & back roads. A few yrs ago, the UK did a Research program about EP & Driving. It was determined that a YR seizure free was the safest! I Agree w/ their findings. I have never gotten my confidence back. I have driven when 1 yr seizure free, but, I do still have concerns. I actually prefer riding Shotgun, at all times. And only drive if I have too.

Sorry this is short. My Babysitting is about to begin. Hugs! Love Candi
 
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sbncmo replied to saxofone1's response:
Thanks Angie!

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!

Thanks for the encouragement, Angie.

Shelia
 
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sbncmo replied to dancer86442's response:
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.


Well, I'm off now with things to do. Hugs, Candi.


Shelia
 
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dancer86442 replied to sbncmo's response:
Sinus infections w/ complications? Been there, done that. For the Ears: Try a cotton swab soaked in Tea Tree Oil. Place in ear cavity for 12 to 24 hr period. Ask your pharmacist where to locate it. It Works! Anti-biotics. Again chek w/ Pharmacy b4 taking. Last one DR prescribed for me (Cipro) for this exact problem 'Could cause seizures' & Did cause me to have Abdominal Seizures. I take My Vitamin C regularly, now. And take a Sinus product the Minute I note Signs.

Not good missing meds. Pay attn to your Phone Alarm & use a Pill organizer so hubby & aide will Know if you took them! Hugs! Have a Good Day.

BTW: I did get my confidence back. I just don't Trust other drivers in other cars. As a shotgun person, I have seen to Many Crazies.

Love Candi
 
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saxofone1 replied to sbncmo's response:
Hi Sheila,

Glad to be of help/support to you. I went through a couple of doctors here in Vegas before I found my current one. I'm very happy with him. Sometimes change is for the better.

Candi mentions the pill box. I have used them since the 90s. I currently have 2 7-day boxes so that I can lay out my meds for 2 weeks. Knowing I have at least one box full is a great way to keep up with refills as well. No more concerns about forgetting to take them or running out. I also keep a 3-day supply of meds in my purse. You never know when you might get stuck somewhere or that the pharmacy might be short on one. Use an empty pill bottle and start an emergency supply for yourself. It has come in handy once in awhile.

Let's keep our circle of strength going. Pass it on to someone whenever they need that extra push.

Good day to everyone,
angie
 
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sbncmo replied to dancer86442's response:
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!)
 
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sbncmo replied to saxofone1's response:
Hi Angie,

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.

Shelia
 
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dancer86442 replied to sbncmo's response:
Good Morning Shelia,

Good to hear your DR is on top of everything. I had never heard of the solution/mix for ear problems that he mentioned. So, it is Good to know there is another 'all natural' Way that Helps. But, if that solution doesn't work for you, Please try the Tree Oil. Ask him or your Pharmacist about it.

I have been told that constant use of any sinus medication (Or other Meds) can cause 'immunity' to that med. What is up w/ Insurance companies Not covering a medication? That is sooo Wrong! Our Health Care system is going down the drain, I fear.

As for Headaches: Your Journal may provide a clue. That is if you are watching/noting what you eat. Another great solution to help relieve them: Massage Therapy. I usually just massage temple, neck, shoulders, spine areas. But, have learned a new massage therapy treatment. Foot Massages: bottom of your feet.

Hugs! Love Candi
 
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saxofone1 replied to sbncmo's response:
Hi Sheila,

You sound full of energy. That's great!!! The alarm on your phone should be a big help to you. That would have helped me when I took my meds 3X a day. I was generally pretty good at that midday dose. It was bedtime when I crashed on the couch when I would forget my meds.

I have never had a problem with refills. Occassionally my pharms have been with their supply and would give me what they had. Other times I was given an advance to get me through until refill time(according to insurances) came about. They would later give me the balance of what my script was. It had a lot to do with my pharm and the trust/bond we had developed.

When you have to leave early, think about a quick snack(granola bar, fruit, yogurt, etc) so you can take that morning dose.

Keep that alarm current. Glad to hear that you're heading in a positive direction.

One more thing, do you keep your meds in sight but in a safe area? A visible location might help you remember to take them.

angie


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