Posted by headachequeen on June 12, 2005, at 9:22:28
In reply to Re: Kat and everyone, posted by stresser on June 11, 2005, at 18:56:30
> Topomax doesnt' seem to keep me awake.
> She is trying the Niocin Shampoo, but it really isn't doing much for the hair. I will continue to buy it, and see what happens with it.
>
> I feel as if maybe I need to increase my topomax dosage a little. Is there such a thing as building up a tolerance to it? Am I just getting worse these days with my moods? I know it's not PMS, and I feel like I did before I started taking Topamax. I only take 200mg, and the doctor said that it is quite low. I don't mind it being low, I feel relieved that I don't need it too be stronger yet.
>
> Kat- I hate it that you are still having the seizures...can you increase the topomax dosage? What else are you taking other that the two you mentioned? -L
>
Ma chere amie, I am going to do some research this week and see what we can do about that hair...
spent the weekend taking a reiki course friend who is a master was teaching and was simply thunderstruck by what happened. She never teaches more than four at a time but this time there were only two, her preferred number of students and I learned so much and experienced so much.
She is also an holistic practictioner and may have some hair ideas... she is trained in many therapies...
I have found that while Topomax does not cause any negative effects unless I stop taking it for any length of time, the Tegretol is devastating to my system. Even when I break it down into four doses, wakening in the night to take it... well that isn't hard as I am not much of a sleeper anyway LOL but if I were able to sleep that night the alarm going off was annoying and it wakens my husband which is unfair...
besides he is aware of the risks associated with the drug and is extremely concerned about it so that is adding to his stress... and his stress levels are high enough as it is with this nonsense.As my emergency appointment with the neuro is coming up, the one booked in January, I thought maybe I had better start taking it again, even if in low doses so it would show up in the blood tests, so he can't scream non-compliant and blame the changes and progression on my non-compliance before I get to tell him that I have discovered the co-relation between the drug and intensity of seizure activity...
as soon as I start taking even a low dose people who know me comment on it -- my eyes, my walking, my speech, articulation, so many things change.
One friend can predict to within five hours when the seizure will occur and whether it will be daytime or nocturnal....
I suppose when it was discovered it was a great improvement over the drugs of the time as they are really threats to the person taking them, but there are surely better drugs out there?
The only other med prescribed for the epilepsy is the clobazam... after all this man has not had time to see me in six almost seven months...In the meantime I have decided to take some control..
I began seeing a reiki practitioner regularly about the time I ditched the tegritol and until I decided last week to try the tegritol for a while, I was five weeks without a nocturnal seizure and have not had any of those marshmallow saranwrap type days in longer than that...
It was just before I ditched the teg completely (I was still taking it just before I went to bed thinking that while I was sleeping or trying to sleep then I was 'safe' so to speak, didn't have to worry about slurring of my speech, staggering when I walk, or any of the things that happen during the day because I would not be doing them )that I had that first falling down seizure...
no warning, didn't even know it had happened until I came to and was trying to get up and couldn't...
I simply could not breathe everything hurt so much..
My primary was in emerg that day (he spends one day a week there and I always seem to do something bizarre when he is there, thank heaven!!!) and called Ottawa and the neuro who said this was just a progression and he was not surprised...
there was no flailing of limbs during it, just as if I had been hit on the head and fell forward unconscious onto the pavement... just what one wants to do on a sunny spring day in mid-town small town Ontario... gives the locals lots to talk about...
My doctor was furious and has decided that we are changing neuros if he does not get some answers and soon... and a change in treatment that stops that constant occurrence...
He thinks that an increase in Topomax and dumping tegritol is a good start because the one seems to work and the other seems to be anything but help but he says there has to be something else that can be done and this is no way to provide quality of life...
seems to me I had heard that somewhere before <s>When I left the hospital I went straight for my first reiki session, for one reason I didn't have any part of me that didn't hurt... no broken bones amazingly... but bruises... I had to go for all sorts of tests before I left emerg including an echocardiogram because of this stupid heart murmur.
I had fallen so hard I had bruised the muscles around the heart... and cracked some ribs but nothing broken...The reiki session really helped me and Jen has been seeing me weekly sometimes twice weekly since. One session she had a second practioner with her and it was incredible -- that was after my visit to the nerve chappie who sent the currents of electricity into my leg to see which nerves were blocked and found that not only are most of them blocked the muscles are damaged because of it, there was no feeling at all, so he decided to test the left leg as a sort of control... there is lots of feeling in it... they heard me yell in Montreal!!! ...
since that session I have not had the excruciating pains in the leg wakening me and it has been ten days at least... I no longer limp... oh, it won't last forever, but as long as I can keep going and it works for a while, I can put off the surgery on my spine and I do not want any more invasive stuff if I can help...My next step in my control battle plan is to learn about other alternative therapies and how they can help me take control...
I am not about to throw over the conventional medical care, but there are therapies out there that made sense centuries ago and that can work with today's world, we just chose to forget them...It is my life; I do not choose to sit here and wait until some doctor remembers that he has this patient and maybe he should see if she is alive or dead...
The Buddhists say that one must live in the moment as my Buddhist friend is always telling me...
well, I decided that the moments flow by too quickly not to live them, because they don't come back for a second chance to live them when we are feeling better...Me? I feel great... just some days are greater than others. In the meantime, I feel even better enjoying the moments because I have taken them back for me... and Kodak shares are up <g>
I am also seeing a speech path again because of the speech problems now that she knows it is the left temporal lobe and the frontal lobe involved she knows what to do...
she has been waiting to hear from the neuro since December... I was in for a follow-up on the throat problem I have and was able to tell her... so away we go...Perhaps by the end of the month I shall have a better balance of medications, or a new specialist...
but whatever, I shall be running the show this time...
not sitting or lying there letting someone else decide it all for me...meanwhile I shall ask Jen and some of the others how we can help M's hair and post you about it...
and 200 is really low... it won't affect weight greatly apparently although it certainly started affecting mine when I began taking it... so you don't have to worry about moving up another 50 to 100 mg really...
400 and up is serious therapy I think from what I have experienced and heard...
but maybe not...kat
poster:headachequeen
thread:5053
URL: http://www.dr-bob.org/babble/20050611/msgs/511400.html