back on the roundabout : Eventually I get to see my... - Headway

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back on the roundabout

1949liz profile image
1949liz
β€’8 Replies

Eventually I get to see my new neurologist on Saturday at Stoke I drove myself there. My old neurologist has retired and I saw the new one. He did the pen thing circles. Yes back on Primadona even after I explained to him that the side effects were horrid. DOES NOBODY LISTEN Side effect horrid. Tried this medication πŸ’Š BUT he insisted I try again. So I will.Take care Love Liz and Shelly πŸΎπŸŒΉπŸ™πŸ’Š

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1949liz profile image
1949liz
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8 Replies
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Painting-girl profile image
Painting-girl

What was his reason for that Liz? Very often there's a different drug that will do the same job if side effects are bad. Could you write to him detailing your side effects and asking for an alternative drug?

Not sure what primadona is?

Think you are talking about Primadone. It's a drug for treating epilepsy. The side effects are suicidal thoughts, depression and low mood among many others. Maybe have a rethink and get more information.

cat3 profile image
cat3

Hi Liz. How many doses of the Primidone are you prescribed ? If it's just one could you take it at night (if only to start with) to minimise side effects ? I presume the neurologist has asked about other meds you might be taking ?

Cat x

1949liz profile image
1949lizβ€’ in reply tocat3

hi Cat he told me to take one a day and then increase to 250 mg a day. I think that is what he said. I am concerned but my tremors are so bad I eat with a spoon and that sometimes is difficult. So I will try. Take care Love Liz and Shelly πŸŒΉπŸΎπŸ™

cat3 profile image
cat3β€’ in reply to1949liz

...and has he advised you to take it at nigh so that the initial 'hit' has faded by the time you're up and about ? I believe this is common practice.... x

Leaf100 profile image
Leaf100

Hi Liz,

It is annoying when they don't listen.

Did you happen to tell your pharmacist your side effects the last time you were on it?

I do that.

If the doc doesn't listen to you ask specifically for a different one because of the side effects, I then take the rx to my pharmacist, get them to look up the side effects, and then ask them to call the doc to say they don't recommend they fill the rx due to side effects and then they suggest something else.

If you didn't tell your pharmacist at the time, have a look online to jog your memory, then go in to the pharmacy you usually go to and say oh could you note these side effects in my file? Also I would appreciate it if you could come up with another option to recommend and discuss it with dr so and so?

Generally I have found pharamacists are really helpful in such cases.

I have a list of stuff I can't take and so if an rx comes in for it they check my file and call the doc themselves now.

You could also call Headway and ask them if they have a pharamacist you could talk to, or if Headway can give you any phrases to say to the doc when this kind of thing comes up. SOmetimes it is knowing the right key phrase to say that means something in the doctor's brain.

If I were in your shoes I would remind myself of the side effects and discuss with my pharmacist before taking it. Side effects are sometimes more than just slightly inconvenient, and will some drugs that take 2 weeks to kick in and 2 weeks to get out of your system, you could be in for a round go - and most of all - you need to be safe.

take care,

Leaf x

1949liz profile image
1949lizβ€’ in reply toLeaf100

Hi Leaf thanks for the advice I will check with the pharmacy last time when I had the side effects I did do that and he told me to stop taking them and check with the doctor. So I will give them another chance and see what happens. Thanks for taking the time to reply to me take care Liz 🌹🐾

cat3 profile image
cat3β€’ in reply to1949liz

Liz, please don't stop them suddenly. I think they need a tailing off period ! x

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