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Dr. Bob is Robert Hsiung, MD,
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Posted by bridgey1128 on November 5, 2004, at 17:04:01
In reply to Re: screwed up meds?, posted by rainy on November 5, 2004, at 13:22:29
Good gracious Kat!!! I was feeling just sort of cruddy but I guess I won't complain....I don't believe I have a right to now after listening to what you have been through! I know sometimes you guys wonder what has happened to me and really, it's nothing except it takes me a while to read all of your posts and think of something to respond with. I have been really run down lately because I am getting back on my Atkins diet and the first two weeks of that make me really tired when my body is adjusting to going from carb burning to fat burning. Then it lets up and I feel great. It's just sort of a withdrawl period where I feel crappy. So far at 200mg I have noticed no weight loss either on the Topomax but no weight gain so that is fine. As long as it doesn't cause me to GAIN weight, I am ok with that. I can lose weight on my own when I get motivated. My goal is to lose at least 20lbs by Dec 13th when my audition is. That will put me at 210. That's not a bad weight for me at all. Not fantastic or anything, but not huge. Then I want to lose 20 more before the show opens. WEEEE...costumers gonna love me. Decided to start my daughter in the Half Pint Players next March. It's a sort of after school drama lesson thing for ages 3-7
She'll be almost 4. I keep joking she could TEACH the class. Anyway, I am alive and kicking. Apparently better off than Kat, poor thing. :( You know, I have never had any hair loss, or weird tasting foods or any of that. I have noticed the balance thing. And I had the tingling thing come back the other day but only briefly. I have never had nausea with it, even if I have it on an empty stomach. In fact, I really don't eat much breakfast unfortunately. I probably need to eat more actually. I just am not hungry. It's partly from the Topomax and partly from the Atkins diet. Oh well, whatever helps me lose weight! I also have to watch my potassium because being on Atkins you don't get as much potassium because you aren't eating the foods that are potassium rich. I take a super multivitamin and omega fatty acid pill with 3 different fatty acids in it. I don't eat fish...*shudder* eew. The Atkins and Vitamin World version of their multivitamin are the ONLY two kinds I have ever been able to take that don't make me sick to my stomach. And I can take them on an empty stomach and not feel sick and we are talking HUGE amounts of stuff in them. I tried the CarbSURE or whatever those were that they just came out with and they literally gave me stomach cramps. So I just take the other ones.
Posted by headachequeen on November 5, 2004, at 17:28:19
In reply to Re: screwed up meds?, posted by rainy on November 5, 2004, at 13:22:29
> wow. You'd been feeling so bleary for several days before the seizure something must have been brewing up a storm.
>>The new neurologist had asked if I ever noticed or felt an aura before the seizures I had ... aura?? what aura???well, the tech doing one of the EEGs the day after I was admitted was talking to me as she attached all the electrodes to my scalp and face and when I described that bleary feeling she asked if it felt like living and walking in a dream... and then told me that was an aura that warned of a seizure...
so now I know what the aura is...
next time it happens I am fastening my seatbelt!!!
> If you feel like it, tell us if the lack of potassium was a major factor in your seizure, or were your meds screwed up or do they even know?>> The potassium played no part in it at all, but the doctors and pharmacist were concerned that I had none in my system... and thanks to Irene I understand why now.
The meds were screwed up and I was actually in a toxic level of tegretol because I had been taking aspirin for the pain in my head... it didn't help but aspirin intensifies the tegretol dose...
as does a med that I am taking for blood pressure... in fact the pharmacist told me that they use it to cut down on expensive drugs used for transplant patients because it doubles the effect so reduces the amount of the expensive drugs needed and I am on 140 mg a day of this stuff... what with the aspirin I tried to kill the pain (tylenol and that sort of stuff had not worked) and the aspirin I take each day for stroke prevention along with 140 mg of Tiazac each day, the tegretol I was taking was more than doubled so I was in toxic levels which didn't help at all...Add to that and I think it is the old <sigh> redhead thing, I have a peculiar form of epilepsy...
turns out that the breakdown and a lot of the depression they have been trying to treat over the years were not actually that at all, although it was helpful in that it helped me deal with issues from childhood that needed to be dealt with, but are symptoms of the epilepsy; this form according to the doctor who tried to explain it to me today, does all sorts of things that are not necessarily seizures and can be very confusing to deal with...
trust me to do that... I never get it right or simple...
They tell me it will take two months to recover from this and that there will be seizures in that time until they get the meds properly balanced...
so until then it is a matter of blood tests and back to the clinic for assessment and more EEGs and so on, and the sleep clinic and heaven knows what...
but I never want to go through that again...and in the book of rules... yes I have rules to follow now... it tells me that these seizures seldom last more than a few seconds ...
HAH!
>And very good luck with these new ones!
> rainy
Thanks, rainy, I do appreciate it...
kat
Posted by headachequeen on November 5, 2004, at 17:34:47
In reply to Re: screwed up meds?, posted by bridgey1128 on November 5, 2004, at 17:04:01
> Good gracious Kat!!! I was feeling just sort of cruddy but I guess I won't complain....I don't believe I have a right to now after listening to what you have been through! I know sometimes you guys wonder what has happened to me and really, it's nothing except it takes me a while to read all of your posts and think of something to respond with. I have been really run down lately because I am getting back on my Atkins diet and the first two weeks of that make me really tired when my body is adjusting to going from carb burning to fat burning. Then it lets up and I feel great. It's just sort of a withdrawl period where I feel crappy. So far at 200mg I have noticed no weight loss either on the Topomax but no weight gain so that is fine. As long as it doesn't cause me to GAIN weight, I am ok with that. I can lose weight on my own when I get motivated. My goal is to lose at least 20lbs by Dec 13th when my audition is. That will put me at 210. That's not a bad weight for me at all. Not fantastic or anything, but not huge. Then I want to lose 20 more before the show opens. WEEEE...costumers gonna love me. Decided to start my daughter in the Half Pint Players next March. It's a sort of after school drama lesson thing for ages 3-7
> She'll be almost 4. I keep joking she could TEACH the class. Anyway, I am alive and kicking. Apparently better off than Kat, poor thing. :( You know, I have never had any hair loss, or weird tasting foods or any of that. I have noticed the balance thing. And I had the tingling thing come back the other day but only briefly. I have never had nausea with it, even if I have it on an empty stomach. In fact, I really don't eat much breakfast unfortunately. I probably need to eat more actually. I just am not hungry. It's partly from the Topomax and partly from the Atkins diet. Oh well, whatever helps me lose weight! I also have to watch my potassium because being on Atkins you don't get as much potassium because you aren't eating the foods that are potassium rich. I take a super multivitamin and omega fatty acid pill with 3 different fatty acids in it. I don't eat fish...*shudder* eew. The Atkins and Vitamin World version of their multivitamin are the ONLY two kinds I have ever been able to take that don't make me sick to my stomach. And I can take them on an empty stomach and not feel sick and we are talking HUGE amounts of stuff in them. I tried the CarbSURE or whatever those were that they just came out with and they literally gave me stomach cramps. So I just take the other ones.You are going to reach that target weight and then knock them dead in auditions...
and I am looking forward to hearing that you have landed a choice role...
In fact, it will be just in time for my birthday... what a gift that will be...
go and do it!!!As for not taking it on an empty stomach successfully, it hasn't bothered me either...
but taking the teg on empty stomach has me so nauseous I could simply curl up and die...
funny how they are so different and yet supposedly alike...
and I have had no hair problems with topomax either...and have I mentioned to you that taking an ounce or so of cashews or pecans or walnuts before eating will cut the appetite... and they are good for so many things as well...
your heart and most parts of the body...and they really work... when I remember to do it I am not nearly as willing to eat as when I forget...
although right now I have had no interest in food for quite some time LOL...Oh Bridgey your posts do sound so much more calm and like you...
it is working...
now break a leg and knock them dead...
your greatest fan is waiting for news...
kat
Posted by headachequeen on November 5, 2004, at 17:41:47
In reply to no longer wondering, posted by rainy on November 5, 2004, at 13:05:48
> About that nerve pain--was trileptal one of the other meds suggested for treating it? It's sort of a cousin of tegretol.
Rainy, the med isNortriptyline and apparently it will make me feel sleepy as well as attack the pain in my head...
I am still going to try the accupuncture... taking the pills over the weekend because the pain is driving me crazy but I do not want any more pills than I have to ...
and the doctor is not thrilled either LOL
kat
Posted by stresser on November 5, 2004, at 19:15:33
In reply to Re: no longer wondering / trileptal » rainy, posted by headachequeen on November 5, 2004, at 17:41:47
I'm sitting here stunned at everything that's been going on the past several days with everyone.
Kat- I really wondered what was up with you, because there weren't any posts. Did this hit you all of the sudden? I am truthfuly worried about you, it is strange how life unwinds, and we make friends that we have never met. I think you need to ask your hubby for a laptop for Christmas this year. We can't have you away from the board for long, because being the "control freak" that you are, I need you to help me control my life. No Joke!! Don't forget.....I'm learning how to be the "Queen of Control," from you. I'll keep my fingers crossed for your new medication.
Larry- Good idea to show the vet the website, I will do that for sure.
Bridgey- There's too much talent in your family!!! I know what it's like to go back to the Adkins....it's a bear! Talk about lethargic and seeing stars? That was me, when I did it for a spring break vacation. Oh, it worked like a charm, and I stayed on it a month before and through the entire vacation. All it took was one baseball concession stand to take me down,.......to a snickers bar!!! That was the end of that. YOU GO GIRL.....I have the utmost confidence and faith in you.
As far as veterinarians go, I know it's harder than medical school because you need to know more that just ONE anatomy. I don't know how they do it. If only the animals could talk, and tell us how they feel......they are one of the greatest joys of my life. I had a dream last night about my dog that died three years ago. Do you ever get past that empty feeling? I have thought about him the entire day, and still want him back as much as I did three years ago.
Must get busy now........this is addicting! -L
Posted by headachequeen on November 5, 2004, at 23:49:54
In reply to Re: no longer wondering / trileptal, posted by stresser on November 5, 2004, at 19:15:33
> I'm sitting here stunned at everything that's been going on the past several days with everyone.
>
> Kat- I really wondered what was up with you, because there weren't any posts. Did this hit you all of the sudden? I am truthfuly worried about you, it is strange how life unwinds, and we make friends that we have never met. I think you need to ask your hubby for a laptop for Christmas this year. We can't have you away from the board for long, because being the "control freak" that you are, I need you to help me control my life. No Joke!! Don't forget.....I'm learning how to be the "Queen of Control," from you. I'll keep my fingers crossed for your new medication.
>
It certainly came on suddenly... apparently I shouted out twice, a common thing with tonic clonic or I gather the current politically correct term is generalised (used to be'grand mal')
and then was completely rigid and unconscious in a matter of a couple of minutes...
in between the shouting and the unconscious my arms and legs did the rhythmic movements, another new twist for me but normal part of tonic clonic... and my husband did his best to hold me still so I could not hurt myself...
he was terrified for me as this was so new..and could not hold me still and could not get me to regains consciousness
when I did not regain consciousness after five minutes and became cyanotic he called an ambulance when he returned to the bedroom, I have always refused to have a phone in the bedroom, I had fallen from bed to floor, taking the bedclothes with me and was wedged between bed and wall ...
had broken our antique bed, at least the frame which is cast iron... and have the bruises to prove it, I was still unconscious but moving around, but in a padded and safe but enclosed environment...
He has told me bits and pieces as I ask questions because I need to know... I know it hurts him to go through it because it was so hard on him...
tonight he said that he should have grabbed one of my cameras and photographed me so I could see what he had to see and maybe I would stop asking...
but it haunts me...
I lost twenty-four hours other than the odd moment when I would fight to the surface...
and I have to have it back...
it obsesses me...
and it scares the daylight out of me...
right now I am a little dizzy and scared to death to go to bed in case it happens again...
taking gravol and that other stuff the doctor prescribed both just in case...
as I said earlier I have to talk to someone about fear because I cannot and will not let it control me like this...
but for the moment it has control...
as long as I do not know what happened and how to prevent it I am scared...
and to have my doctor (he was in emerg with me treating me until he shipped me out) tell me that he felt so badly for me ... that does not help :(
Fear is not a healthy thing either... it has to be dominated... and controlled...>
> Bridgey- There's too much talent in your family!!!We will soon be hearing about this pre-school talent and I for one look forward to it with great glee <GG>
> As far as veterinarians go, I know it's harder than medical school because you need to know more that just ONE anatomy. I don't know how they do it. If only the animals could talk, and tell us how they feel......they are one of the greatest joys of my life. I had a dream last night about my dog that died three years ago. Do you ever get past that empty feeling? I have thought about him the entire day, and still want him back as much as I did three years ago.I don't think that one ever gets past that feeling of loss but there is a time when the feeling is one of memory and warmth when you think of the dog with smiles more often that tears...
working toward that now with one that died three months ago...kat... who believes this place is incredible therapy...
incredible...
thanks, L
>
>
>
>
Posted by rainy on November 6, 2004, at 15:06:52
In reply to Re: no longer wondering / trileptal, posted by headachequeen on November 5, 2004, at 23:49:54
Lorilu, you wrote that you're on provigil. Have you found that it has any effect on your thinking process besides helping you stay focused? I can't stop thinking today and I'm wondering if it's the medication. (It's not all that interesting, either.) I've been on 200 mgs for a little over a week. I think it makes me shaky, too. Have you noticed that?
rainy
Posted by stresser on November 6, 2004, at 16:09:12
In reply to can't stop thinking, posted by rainy on November 6, 2004, at 15:06:52
Kat- I would be exactly the same way with my husband. I would as him repeadedly about what happend with the seizure, and I'm sure it would be agonizing to recall the event. Can you emagine? I hope you are feeling better today, and am wondering how you are doing on the new medication? -L
Posted by headachequeen on November 6, 2004, at 17:05:25
In reply to Re: can't stop thinking, posted by stresser on November 6, 2004, at 16:09:12
> Kat- I would be exactly the same way with my husband. I would as him repeadedly about what happend with the seizure, and I'm sure it would be agonizing to recall the event. Can you emagine? I hope you are feeling better today, and am wondering how you are doing on the new medication? -L
I know that he wants to forget it as he is afraid that it is going to happen again; I am afraid it is going to happen again and the doctors are afraid it is going to happen again... if they are afraid then I am terrified so I have no idea where that leaves him, but I feel that I have to know...
when I was in hospital they kept giving me Tylenol to bring down a fever... and I kept thinking of my orthopaedist who has told me not to take Tylenol in any form because it is so hard on the liver and I have been given so much of it over the years for pain that it is probably built up in damage...
but they cannot give me any aspirin product and I am not to take aspirin products ... so where does that leave me I wonder...
another question that I should have asked before I left...
the new med is not to be taken with antihistamines unless with the agreement of the doctor... well I did not ask about that either and I take a very strong one, one that is banned in our armed forces ... so I have been not taking it and sneezing and itching until my skin is about to peel off in layers at a time..
I know that my own doctor has given instructions that if I call I am to be given an emergency appointment that day... so Monday I shall call and get these questions answered...
I an making a list :(Another thing that the poor demented husband has told me is that when he tried to hold me so I would not hurt myself my skin was so hot it was uncomfortable to touch... and nothing that I have read includes fever in these seizures...
more questions I want answered...the neuro team wants him to come on the appointment when I go to the clinic as they want him to tell them what the nocturnal seizures are like, what happened this time and what happened during those other, daytime, tonic clonic seizures a few weeks ago... maybe then I will get the answers I need, but I cannot wait until then...
this is a full day out of my life and it is so weird...
the one new med is supposed to deal with seizures but, at the same time, it is supposed to stop the racing brain thing, the constant thinking that keeps me awake at night...
well that part is not working...
the pain killing stuff is supposed to make me sleep too... not working...
I am afraid to sleep... and it is early in the morning before I fall asleep out of exhaustion...
then I am up and doing things by eight...
and afraid even to nap when I am so tired that I know it will push me to seizures if I don't rest...
logic loses to terror...those constant thoughts may be keeping you from sleeping properly... or resting properly...
sure doesn't let me sleep at least it didn't before this and the doctor put me on that whatever it is so that my brain would rest...
it worked; I would sleep for eight hours...
kat
Posted by headachequeen on November 6, 2004, at 18:13:03
In reply to can't stop thinking, posted by rainy on November 6, 2004, at 15:06:52
> Lorilu, you wrote that you're on provigil. Have you found that it has any effect on your thinking process besides helping you stay focused? I can't stop thinking today and I'm wondering if it's the medication. (It's not all that interesting, either.) I've been on 200 mgs for a little over a week. I think it makes me shaky, too. Have you noticed that?
> rainy
Is it the medication or is your brain simply racing? are the thoughts coming so quickly that you can't keep up?
some of those thoughts may be ones that you should be writing down as they may be ones you want to act on later...
others may be ones that are anxiety driven...
which is it?
kat
Posted by rainy on November 6, 2004, at 18:43:24
In reply to Re: can't stop thinking » rainy, posted by headachequeen on November 6, 2004, at 18:13:03
Ms. Kat, it isn't racing thoughts--my parents didn't dub me Slow Poke at my mother's knee for nothing. I can't answer as I'd like becasue we have to go to a hoity toity concert tonight in about five minutes, but I'm a little concerned about you.
What does sleep deprivation (and I understand your interest in staying awake) do to the odds of you having another seizure? Can your MD help you out here? You don't have to asnwer--I'm just thinking out loud. I know it seriously messes with manic depressive episodes. Also, from a lay person's pont of view, this fever buisness sound like there's something besides a strictly neuro phenomenon going on.
And finally, while there was a tylenol scare here in the U.S. a few years ago, it seems to have died down and despite having spent five years or so swilling a lot more vodka than was good for any part of me, I still use it because I can't tolerate ASA.
My liver function panels are always OK. So unless your medical people tell you, specificall otherwise, don't sweat the tylenol right now.
Here's David, gotta go, hang in there and trust your body. Give up some of that famous control and let sleep come. It heals. If you have another seizure it's truly not the end of the world.
easy for me to say
all best wishes and good thoughts
rainy
Posted by merry on November 6, 2004, at 19:59:16
In reply to Re: can't stop thinking, posted by rainy on November 6, 2004, at 18:43:24
I've finally reached 400mg topomax. It was a long journey. It wasn't easy either. Even though I took it nice and easy and slooowww. It still was a hard road. But it was worth it because I notice that I am feeling better. My moods are much more stable. I still have the tingles in my legs and I don't like carbonated drinks and my sense of smell is as good as my dogs'....now everything stinks. I want to wash my carpet. Oh yeah, I lost a total of 7lbs. Hurrah!
Kat, I'm so sorry about what you have been going through. I hope you are feeling better.Wow, everyone, you sure are a supportive bunch! I have been reading and catching up on the past posts and ya'll have been just wonderful to each other. I just wish we can have a group hug. Ok. Now I think I am being a little weird. But I feel all warm and fuzzy inside right now and I guess that is a positive thing and I shouldn't put myself down because of it.
Anyway, That Lar guy taught me a thing or two about topomax. Very informative.
Well, gotta feed my animals. Glad to be back!
merry
Posted by iris2 on November 6, 2004, at 20:06:26
In reply to can't stop thinking, posted by rainy on November 6, 2004, at 15:06:52
Rainy
Provigil made me shakey and nervous. So bad that I stopped taking it. It did thte same to my girl friend. So it might be that it is making you shake.
irene
Posted by iris2 on November 6, 2004, at 20:14:06
In reply to Re: can't stop thinking » stresser, posted by headachequeen on November 6, 2004, at 17:05:25
Kat,
Maybe you can stop ruminating a little if you think about having the aura and feeling weird before you had the seizure. Perhaps you could just pay attention to how you are feeling and be aware if you start having that kind of out of body type experience.
I have done that with my migraines. I get an aura before so I am aware when I am getting a migraine and not just nauseous or have a small headache.
Hope this might help a little. Now get some sleep:)
irene
Posted by stresser on November 6, 2004, at 20:50:28
In reply to Re: can't stop thinking » rainy, posted by headachequeen on November 6, 2004, at 18:13:03
A fever with a seizure? I don't know much about seizures, but I'm thinking that it's not common. Kat- Yes, your husband must go to the doc. with you, he needs to know what to look for during your sleep, and you need sleep. I'm really curious about the anti-histamine that is banned from your armed forces. I have an idea, but not quite sure what it is. Do we have it here? Have you ever taken Klonipin? I'm sure that is a ditzy question, because you have been dealing with this for years. If it were me (I'm not a patient person at ALL), I would be calling my doc. tomorrow, PRONTO. I think he needs to know how you are feeling and how frieghtened you are. Let us know what you decide to do. -L
Posted by stresser on November 6, 2004, at 20:58:44
In reply to Re: can't stop thinking » headachequeen, posted by iris2 on November 6, 2004, at 20:14:06
Seven pounds is wonderful, and having you back makes it twice as nice!!! I sound like my grandma! Sooooo, did the topamax make you lose the weight? I'm still picking everyone's brains over this blasted drug, because I always think I need an answer to every problem emmediatly. No patience here.....Just waiting for it to kick in for my daughter. Larry is great huh? -L
Posted by headachequeen on November 6, 2004, at 22:33:53
In reply to Re: feeling better, posted by merry on November 6, 2004, at 19:59:16
> I've finally reached 400mg topomax. It was a long journey. It wasn't easy either. Even though I took it nice and easy and slooowww. It still was a hard road. But it was worth it because I notice that I am feeling better. My moods are much more stable. I still have the tingles in my legs and I don't like carbonated drinks and my sense of smell is as good as my dogs'....now everything stinks. I want to wash my carpet. Oh yeah, I lost a total of 7lbs. Hurrah!
>
Merry, seven pounds... and just the beginning...
congratulations...
I feel great for you...
at the hospital they told me that some times the tingling is actually a migraine, especially when it affects the hands and face...
something else to think about...
usually I have found that it is a warning of a seizure to come and I felt that my early warning system had let me down...
but the tingling in the legs is common with topomax and does go away as you become accustomed...
there is hope <g>
glad to see you back with us... don't go away again...
kat
Posted by rainy on November 7, 2004, at 5:51:03
In reply to Re: can't stop thinking, posted by rainy on November 6, 2004, at 18:43:24
I sat through the concert last night feeling as if I had come on very strong in my last comment about it not being the end of the world if you had another seizure, Kat. I'm sorry.
Of course it would be unpleasant at best and send you and your husband for another harrowing ambulance ride and reprise of your earlier experience, maybe with fringes, at worst.
I was speaking out of turn and again, please accept my apology.
rainy
Posted by headachequeen on November 7, 2004, at 9:54:24
In reply to yelling at Kat, posted by rainy on November 7, 2004, at 5:51:03
> I sat through the concert last night feeling as if I had come on very strong in my last comment about it not being the end of the world if you had another seizure, Kat. I'm sorry.
>
> Of course it would be unpleasant at best and send you and your husband for another harrowing ambulance ride and reprise of your earlier experience, maybe with fringes, at worst.
>
> I was speaking out of turn and again, please accept my apology.
>
> rainyrainy you were NOT speaking out of turn..
I have not read the actual post yet... I had gone to bed actually and am reading the posts from the top down this morning <g>
but I have to get balance back in myself and in my life and face these fears...
there will be more seizures, I only hope of a lesser extreme...
the fever with this one was so extreme that one of the concerns was brain damage...
I am not sure how I would cope with that... and I know now, after a long chat with my favourite (and only) son, that my husband was in a long night of terror about it until they told him some time late the next day that the fever had come down quite a bit and was under control. By Thursday morning I was only a few points above normal temperature... and still being given Tylenol to bring it down...no Rainy, you are not speaking out of turn...
logic has to re-enter my life...
yesterday to my great delight, we were out for coffee and he let me walk home alone -- I stopped to pick up bread and croissants at the bakery and a couple of fish at the hobby shop to add to the aquaria in the living room...
he was in the front door a few minutes after I was and I secretly believe he followed me but I had the feeling of doing it alone <gg>
He has been so smothering almost...
but I have been hearing from people how totally distraught he has been and I am now developing a real case of the guilts even though as he says I didn't plan it...
and I don't plan to do another one either...
I can't wait until they get this med thing balanced... it says in the book they sent home with the rules in it that it could take as much as two years!!!!!! LOL that really made my day
kat
Posted by headachequeen on November 7, 2004, at 9:57:55
In reply to Re: can't stop thinking » headachequeen, posted by iris2 on November 6, 2004, at 20:14:06
> Kat,
>
> Maybe you can stop ruminating a little if you think about having the aura and feeling weird before you had the seizure. Perhaps you could just pay attention to how you are feeling and be aware if you start having that kind of out of body type experience.
>
> I have done that with my migraines. I get an aura before so I am aware when I am getting a migraine and not just nauseous or have a small headache.
>
> Hope this might help a little. Now get some sleep:)
>
> irene
>
I certainly shall react the next time - if there is a next time - that feeling occurs. Instead of grumbling about it, I shall seek help...
lesson learned..
I never had auras with migraine either...
they were just there full-blownIrene, when I was at the doctor's on Friday he told me almost as much as you did about Potassium by the way and did blood test for it and magnesium...
first time he had actually told me how it affects so much...
I told him a friend had already explained in detail andthat I was going to be very attentive in the future...
<G>
kat
Posted by headachequeen on November 7, 2004, at 11:15:29
In reply to Re: can't stop thinking, posted by rainy on November 6, 2004, at 18:43:24
> Ms. Kat, it isn't racing thoughts--my parents didn't dub me Slow Poke at my mother's knee for nothing. I can't answer as I'd like becasue we have to go to a hoity toity concert tonight in about five minutes, but I'm a little concerned about you.
> What does sleep deprivation (and I understand your interest in staying awake) do to the odds of you having another seizure? Can your MD help you out here? You don't have to asnwer--I'm just thinking out loud. I know it seriously messes with manic depressive episodes. Also, from a lay person's pont of view, this fever buisness sound like there's something besides a strictly neuro phenomenon going on.
> And finally, while there was a tylenol scare here in the U.S. a few years ago, it seems to have died down and despite having spent five years or so swilling a lot more vodka than was good for any part of me, I still use it because I can't tolerate ASA.
> My liver function panels are always OK. So unless your medical people tell you, specificall otherwise, don't sweat the tylenol right now.
> Here's David, gotta go, hang in there and trust your body. Give up some of that famous control and let sleep come. It heals. If you have another seizure it's truly not the end of the world.
> easy for me to say
> all best wishes and good thoughts
> rainy
Ah, found the post you meant :)If it makes you feel better <g>, at some point last night or early this morning, I fell asleep despite my determination not to -- the med that my own doctor gave me Friday afternoon and the new one the neurologists gave me to go with the lessened tegretol and the unchanged topomax both have sleep inducing side effects and they worked it seemed... I feel asleep earlier then woke up and read for a while then the next thing I knew it was eight or so and I had slept really soundly... forgot to be afraid of what might happen..
as one of the people on one of the epilepsy boards... man are they technical there and not at all like here they have a long way to go to become human... pointed out, it can happen when I am awake too, so now I have to worry about being awake LOL...
seems I am not able to be as in control as much as I planned <GGG>I have the other med, forget what it is called and the neuro told me that if this new stuff does not make me sleep then take it.. but give this new one a day or two to do its stuff...
I am certainly in the same group as you are, rainy, and cannot tolerate ASA now... the things it does when mixed with Tegretol are downright terrifying...
was reading yesterday about two teenagers who died when given a pain patch... seems that one needs to have reached a level of tolerance to pain meds equivalent to at least Tylenol III before being given this patch and their doctors didn't know this...
made me think of my former neuro prescribing aspirin and then the tegretol... he should have known of its effects when mixed with tegretol...
and then I increased the effect by trying to eliminate this pain in my eye area with more aspirin...thanks for the info on tylenol... almost everything else seems to be asa based...
and I always found that tylenol worked...so back to my naps in the afternoon and evening and simply taking it from moment to moment...
I know it is going to happen again, but I hope it will not be on that extreme level...
I never want to put the other half of this partnership through that again...
he says I took thirty years off his life...
I suggested that if he quit smoking it might give him back fifteen...
seems it was not the time to say so....lol
kat
>
>
Posted by headachequeen on November 7, 2004, at 11:34:10
In reply to Re: can't stop thinking » headachequeen, posted by stresser on November 6, 2004, at 20:50:28
> A fever with a seizure? I don't know much about seizures, but I'm thinking that it's not common. Kat- Yes, your husband must go to the doc. with you, he needs to know what to look for during your sleep, and you need sleep. I'm really curious about the anti-histamine that is banned from your armed forces. I have an idea, but not quite sure what it is. Do we have it here? Have you ever taken Klonipin? I'm sure that is a ditzy question, because you have been dealing with this for years. If it were me (I'm not a patient person at ALL), I would be calling my doc. tomorrow, PRONTO. I think he needs to know how you are feeling and how frieghtened you are. Let us know what you decide to do. -L
The name under which I get it is hydroxizin CL and my son was told that it was considered a banned substance...
the team at the hospital in Ottawa were unaware of it and I did not get it the whole time I was there... forgot to ask my own doctor when I saw him on my return if I can take it; have to call tomorrow... itchy eyes, itchy skin where it touches my clothing other than silks and cotton and it is getting a little cold up here, and constant sneezing... soon be into the intense reactions as I am allergic to half the known world and at least half the unknown world -- a redhead thing I think...
my son has the same allergies, food, environmental, and drug.... and is a redhead...
for both of us, this is the only thing that works and is apparently the strongest thing out there...
one of the oldies but goodies...
every doctor that comes along tries to change the med to new and milder but every allergist says if it ain't broke don't mess with it ... the newer ones don't work...
we take the shots and they don't help much so we go back to these little green footballs.
The hospital pharmacist wasn't aware of it either...
she had to look it up and still wasn't aware of it... it is really an oldie but then the doctor who prescribed it originally is 76 and still practising <g>When I first saw this neuro, he is the head of the epilepsy clinic for the region, he was surprised that Stephen had not come with me... Stephen does not do hospitals very well... as he needed info that only Stephen can give him, and insisted he come next visit which was to have been February, so he can find out what the nocturnal seizures are like and what the August and September tonic clonic seizures were like --
now he really wants to see him to find out what happened this time... and I am going to be all ears... I want to fill in the blanks...My son called this morning and says it was the same when he talked to his dad. Each time he would get a little more information... and was careful not to say anything about his frustrations or he might not get any more information... he is a senior warrant officer and used to demanding responses and getting them right then and there from his men, it was hard to wait for bits and pieces <g>
It was from him I learned about the risk of brain damage from the high fever that would not break...
Stephen didn't mention that to him until late Tuesday and has yet to mention it to me...
he *really* operates on need to know <g> and he has always been a civilian LOLWhen I was being released the nurse told me one of the team was still there and if I had any questions she would make sure he came back to answer them... I had none...
I told her I would think of dozens when I got home...Now I have hundreds...
Ain't it always the way...but I am slowly finding my way back to me...
since this thing could happen again any time of day awake or asleep no point being afraid to go to sleep...
and can't be afraid to be awake...
I have missed too much of my life already...and I was thinking of you people while I was in there... wanted my laptop but there is no way to use it there... and one of the rules is no using the computer while they have you in their clutches...
they have rules for everything sigh...
kat
Posted by iris2 on November 7, 2004, at 11:59:35
In reply to Re: yelling at Kat » rainy, posted by headachequeen on November 7, 2004, at 9:54:24
Kat,
What meds are you on now? I think you said they changed or added some? And they decreased the Tegretol?
I really meant what I said about not worrying about having another seizure. If you have an aura before and/or other symptoms then you can probably predict them a little better by recognizing the "precursor" symptoms. Like I said I do this for my migraines.
Second it is definitely a waste of time and energy to worry about something that you have no control over. The best you can do is to take the medication as prescribed and take notice of side effects and any break through seizure like activity including aura stuff or feeling like you are in the twilight zone (cannot think of a better way to define it). Do you get like that, I do
Try to be somewhat aware of the symptoms if you can then you can take whatever immediate action you need to. In your case I would think perhaps it would be getting to the hospital immediately.
Now I am going to ventL
I started taking a medication that is helping my depression a lot. It is Amisulpride. It stops the constant ruminating thoughts of wanting to die and negative self-thinking. It also helps tremendously with the accompanying anxiety.
Problem is that I have an eating disorder of some magnitude for 30 years. The Amisupride increases my prolactin which has made my menses stop and is making me gain a lot of weight around my stomach. Actually it is making me have a rather large stomach but I think in reality I have lost a couple of pounds. I went off of it once for four days and started going berserk because I was so anxious and full of self loathing and wanting to die. But the stomach stuff is driving me mad. I have trouble exercising, as my depression is so bad I have trouble doing almost anything so I am trying to exercise my stomach a little but not having great success at doing it. Not sure how much it would help anyway. I am upset also because I do not know even if I go off the medication if I will loose this big stomach . I am going to try taking a medication that will lower the prolactin which should stop this from getting worse but again I do not know if it will go away. I just started taking a medication called Mirapex for depression, which could also have a lowering effect on the prolactin. Before I try anything else I need to wait and see if I can take this with my bladder ( I have interstitial cystitis), if it helps the depression and if it lowers the prolactin.
I know I am rambling. That should tell you all how upset I am about this ballooning stomach. I have read several posts saying how people would not take a med because it made them gain weight or stay on one because it kept their weight down and some of these people did not even have an eating disorder at least that I knew about. I always said to myself that I would not be so irrational. I have seen people for years go off of medication that was helping them tremendously because of weight gain. I always told myself that I would never be that person. That it was not a logical thing to do. To deal with the weight as best I could and try to keep it under some control. Great control it has made my bulimia start up again. I have started to purge several times a week. I think I am getting that part under control though.
Ok so that is what is going on. Any input would be appreciated.
Thanks,
irene
Posted by iris2 on November 7, 2004, at 12:03:09
In reply to Re: can't stop thinking » iris2, posted by headachequeen on November 7, 2004, at 9:57:55
Kat,
I cannot rmember what I know about the magnesium. I have some to take and for the life of me cannot rmeber waht my reasoning was for taking it. I think a lot was for depression though. Other stuff too. I will look it up on the net but could you babble mail the information your doc told you.
Thanks,
irene
Posted by iris2 on November 7, 2004, at 12:09:09
In reply to Re: can't stop thinking, posted by headachequeen on November 7, 2004, at 11:15:29
Does your husband belong to any kind of supprot group or get any type of support for your epilepsy? It might make him feel more at ease if he can share his feelings with others who go through the same things. Or even if he cannot share it might help just to be more informed about it all so he will not be so afraid. I used to be involved in several self help groups and went to a trianing to start them. It was mostly people with MS but just in the training I think a lot of people felt better because they were not alone and became better informed so they had less to worry about.
irene
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