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Hi Friends,

I know I wrote about meds not long ago with what I do as far as keeping

myself safe with more than one doctor prescribing for me.

I keep a list of surgeries I've had done, prescriptions I take with dose and

time I take them, and my name, Soc. number, and insurance information and

phone number at the top of the page, in my purse. When something changes, it

is easy to go to that file, change it and print it and put it back in my

purse. Sometimes I carry several copies for different doctors. This will

also be available through a bracelet Medic alert that I will wear once I

order it :)

When I have scripts filled, I make sure they are at one pharmacy. Our

insurance has come up with a mail order system where if I buy two months I

get one free. I do order my expensive meds from there now. However, the

local pharmacy that I use knows of all the medications I take, right down to

Advil.

Most pharmacies around here have a consultation area that you can sit with

the pharmacist to discuss any questions you might have with your

medications. I try to read information that comes with the script, but

sometimes just don't have the time or mental capacity :) I will ask the

pharmacist questions, and it is very helpful.

One thing I didn't know, but is very important is any pill without a scored

line is not meant to be split. If there is a scored line, you can cut the

pill in half or quarters in some cases. With the advancements in medication,

timed released being one of the best this is very important. If you split or

crush a timed release pill or capsule, the medication is all released at

once, which causes major problems.

I was prescribed Valium and it had a score. I asked my doctor if I could

split them when I was feeling I could go off of it, but still needed a

little for relief. My doctor said no, you really don't know how much of the

med you are receiving. It really is best to have another script written for

a lower dose than it is to split it.

When in doubt with your medications, there are several excellent pharmacy

type web sites that will give you the full explanation, warnings, and side

effects of meds. That and pharmacies now have to include information with

your prescription. Mine is always attached to the bag the pills come in.

Just like CCI, none of us have exactly the same symptoms, and none of us

react to medications in exactly the same way either. Be cautious and if you

have any problems when taking meds, get in touch with your doctor or

pharmacist.

Kathleen

Diagnosed with CM/hydrocephalus 1990, decompression/shunt. Since diagnosed

with craniocervical instability, Ehlers Danlos, and Tethered Cord Sydrome,

surgery for everything but EDS since 1998.

http://chiariconnectioninternational.com/

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Kathleen,

Thanks so much for posting this info. Goodness knows that many of us have

had really tough experiences with finding the right med for us!

My two cents is that most times docs count on the pharmacist to explain the

meds to us, which what pharmacists are supposed to do, yes? Some of us have

had bad experiences and misinformation from non-expert docs (esp. for ACM)

about meds and I really do wish that IF they are going to advise us, they

make sure they are very very careful. It is so difficult to figure out! I

always count on my pharmacist because I've had several local doctors

prescribe a med that will have a bad cross-reaction with another med, gives

improper dosages, or don't explain correctly or at all. Two of my local

docs have actually lied to me because I was adamant that I would not take

narcotics (just a personal choice) or anti-depressants (bad reaction) and I

believe they thought I was nutters. Then I got to the pharmacy only to

learn that was exactly what they prescribed. Confronting them is a whole

other story. They basically said I was unhappy and invited me out of their

practice. I was not rude at all, only self-advocating. I was FURIOUS inside

though. They were playing with my health! Thank goodness for pharmacists! I

call them too when I have a question and they are usually very receptive.

I'm 4 1/2 years post-surgery so I choose not to take narcotics now because

I don't need them. But many people do, and after my surgery oxy was my

lifesaver. I was on liquid oxy. It was tough to get off of. I thought I was

doing SO great so I got off it too early, without the doctor's/pharmacist's

advice, and it was a terrible idea. My health went into a hole FAST. So

then I went back to doing what the docs and pharmacists told me. It is hard

after surgery too since you may not be the one who goes to the pharmacy or

completely 'with it', so I kept the instructions by my bed, believe it or

not. I read them all the time because I just couldn't remember everything.

I had a journal of when I took my meds and how much I took, which I think

is always a good idea.

I guess I'm a little concerned of the med discussions on several

listserves lately because new people get so scared by some information that

may be true for some, but not all people. And we may have been told a

certain thing, or read it on the Internet, and sometimes we get incorrect

information. I know I have! So when we post to the group I think we have a

great responsibility to each other to make sure we are posting very

credible information. Again, just my humble opinion! No digs intended

toward anyone AT ALL.

Peace!

> [Original Message]

>

> To: CCI < >

> Date: 8/2/2008 11:53:49 AM

> Subject: Medications

>

> Hi Friends,

>

> I know I wrote about meds not long ago with what I do as far as keeping

> myself safe with more than one doctor prescribing for me.

>

> I keep a list of surgeries I've had done, prescriptions I take with dose

and

> time I take them, and my name, Soc. number, and insurance information and

> phone number at the top of the page, in my purse. When something changes,

it

> is easy to go to that file, change it and print it and put it back in my

> purse. Sometimes I carry several copies for different doctors. This will

> also be available through a bracelet Medic alert that I will wear once I

> order it :)

>

> When I have scripts filled, I make sure they are at one pharmacy. Our

> insurance has come up with a mail order system where if I buy two months I

> get one free. I do order my expensive meds from there now. However, the

> local pharmacy that I use knows of all the medications I take, right down

to

> Advil.

>

> Most pharmacies around here have a consultation area that you can sit with

> the pharmacist to discuss any questions you might have with your

> medications. I try to read information that comes with the script, but

> sometimes just don't have the time or mental capacity :) I will ask the

> pharmacist questions, and it is very helpful.

>

> One thing I didn't know, but is very important is any pill without a

scored

> line is not meant to be split. If there is a scored line, you can cut the

> pill in half or quarters in some cases. With the advancements in

medication,

> timed released being one of the best this is very important. If you split

or

> crush a timed release pill or capsule, the medication is all released at

> once, which causes major problems.

>

> I was prescribed Valium and it had a score. I asked my doctor if I could

> split them when I was feeling I could go off of it, but still needed a

> little for relief. My doctor said no, you really don't know how much of

the

> med you are receiving. It really is best to have another script written

for

> a lower dose than it is to split it.

>

> When in doubt with your medications, there are several excellent pharmacy

> type web sites that will give you the full explanation, warnings, and side

> effects of meds. That and pharmacies now have to include information with

> your prescription. Mine is always attached to the bag the pills come in.

>

> Just like CCI, none of us have exactly the same symptoms, and none of us

> react to medications in exactly the same way either. Be cautious and if

you

> have any problems when taking meds, get in touch with your doctor or

> pharmacist.

>

>

> Kathleen

> Diagnosed with CM/hydrocephalus 1990, decompression/shunt. Since diagnosed

> with craniocervical instability, Ehlers Danlos, and Tethered Cord Sydrome,

> surgery for everything but EDS since 1998.

>

> http://chiariconnectioninternational.com/

>

>

>

>

>

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I have one thing to add to this. I've been out of town so if someone else has

said this and i have not read it yet i apologize, I'm only to the E's on my 500

emails.

When you are a member of medic alert. You can update your file as much as you

would like. You can print that. Also you get as many cards as you want for

free. I think it only lets you order one at a time, but i have one in my purse

and one in my mom's purse. It lists all your medications, allergies, and

dosages on there. I cant remember if it lists surgeries or not. The thing

about the cards is paramedics are trained to be on the look out for the symbol

so if they see the bracelet they are more likely to look for a card also.

Medications

>

> Hi Friends,

>

> I know I wrote about meds not long ago with what I do as far as keeping

> myself safe with more than one doctor prescribing for me.

>

> I keep a list of surgeries I've had done, prescriptions I take with dose

and

> time I take them, and my name, Soc. number, and insurance information and

> phone number at the top of the page, in my purse. When something changes,

it

> is easy to go to that file, change it and print it and put it back in my

> purse. Sometimes I carry several copies for different doctors. This will

> also be available through a bracelet Medic alert that I will wear once I

> order it :)

>

> When I have scripts filled, I make sure they are at one pharmacy. Our

> insurance has come up with a mail order system where if I buy two months I

> get one free. I do order my expensive meds from there now. However, the

> local pharmacy that I use knows of all the medications I take, right down

to

> Advil.

>

> Most pharmacies around here have a consultation area that you can sit with

> the pharmacist to discuss any questions you might have with your

> medications. I try to read information that comes with the script, but

> sometimes just don't have the time or mental capacity :) I will ask the

> pharmacist questions, and it is very helpful.

>

> One thing I didn't know, but is very important is any pill without a

scored

> line is not meant to be split. If there is a scored line, you can cut the

> pill in half or quarters in some cases. With the advancements in

medication,

> timed released being one of the best this is very important. If you split

or

> crush a timed release pill or capsule, the medication is all released at

> once, which causes major problems.

>

> I was prescribed Valium and it had a score. I asked my doctor if I could

> split them when I was feeling I could go off of it, but still needed a

> little for relief. My doctor said no, you really don't know how much of

the

> med you are receiving. It really is best to have another script written

for

> a lower dose than it is to split it.

>

> When in doubt with your medications, there are several excellent pharmacy

> type web sites that will give you the full explanation, warnings, and side

> effects of meds. That and pharmacies now have to include information with

> your prescription. Mine is always attached to the bag the pills come in.

>

> Just like CCI, none of us have exactly the same symptoms, and none of us

> react to medications in exactly the same way either. Be cautious and if

you

> have any problems when taking meds, get in touch with your doctor or

> pharmacist.

>

>

> Kathleen

> Diagnosed with CM/hydrocephalus 1990, decompression/shunt. Since diagnosed

> with craniocervical instability, Ehlers Danlos, and Tethered Cord Sydrome,

> surgery for everything but EDS since 1998.

>

> http://chiariconnectioninternational.com/

>

>

>

>

>

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