Evaluations from Patients who take Primidone

**Purpose:** Epilepsy *(Started Nov 10, 2010)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
Jan 21, 2013	300 mg Daily	Slight	None	Always	Not at all
Nov 23, 2009		Moderate	Moderate	Always	A little

**Purposes:** Essential Myoclonus, Myoclonus, and Other *(Started May 30, 2008)*
Date	Dosage	Essential Myoclonus Perceived effectiveness	Myoclonus Perceived effectiveness	Other Perceived effectiveness	Side Effects	Adherence	Burden
Jul 19, 2011	300 mg Daily
Apr 30, 2009	100 mg Daily
Nov 18, 2008	100 mg Daily
Sep 11, 2008	125 mg Daily

Date: Jul 19, 2011
Advice & Tips: Stopped all meds due to elevated liver enzymes, until liver situation resolved.
Cost: < $25 monthly

Date: Apr 30, 2009
Advice & Tips: It's been a miracle drug for me, so I gladly deal with the constipation. Jerking has all but stopped completely.

Date: Nov 18, 2008
Advice & Tips: Primidone worked great for stopping all the jerks and tics I had developed as part of my Essential Myoclonus. But by the second of day of using it I could tell constipation was going to be a problem. I take Miralax, 3 Metamucil capsules, and use 2 Glycerin suppositories every day, not to mention the high fiber diet and prunes I eat every day! Milk of Magnesia has stopped working and it took 2 rounds of Go-Lytely to clean me out. Two days later I was constipated again. That's when I decided it was time to find an alternative to Primidone.

Date: Sep 11, 2008
Advice & Tips: It stopped the Myoclonus almost totally within 2 days of starting treatment! I will deal with the constipation by other means and definitely continue taking the Primidone.

**Purpose:** Seizures (grand mal or tonic-clonic) *(Started Jan 01, 2002)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
Jan 13, 2011	3 x 250 mg/5 mL Daily	Moderate	Severe	Always	Somewhat
Jan 20, 2010	4 x 250 mg/5 mL Daily	Moderate	Severe	Usually	Very
Dec 30, 2009	4 x 250 mg/5 mL Daily	Moderate	Severe	Usually	Somewhat

Date: Jan 13, 2011
Advice & Tips: For about a year the doctor has tried me on different medications, some for a very short time, now on Vimpat. He is reducing the primidone to reduce extreme tiredness. At times I will be sitting at a desk and all of a sudden wake up and realize I have been asleep for a half hour or so.
Cost: < $25 monthly

Date: Jan 20, 2010
Advice & Tips: From the point when I started taking Primidone I felt VERY TIRED almost all the time. My Blood Pressure (BP) went up in spite of a higher dose of BP medicine. I have muscle weakness.
Cost: < $25 monthly

Date: Dec 30, 2009
Advice & Tips: Makes me even more tired. Last time they increased my dose I went to a point that I could easily sleep 12+ hours per day.
Cost: < $25 monthly

**Purposes:** Essential Tremor and Migraine headaches *(Started Aug 01, 2010)*
Date	Dosage	Essential Tremor Perceived effectiveness	Migraine headaches Perceived effectiveness	Side Effects	Adherence	Burden
Oct 10, 2010	50 mg Daily	Moderate	Moderate	None	Always	Not at all

Date: Oct 10, 2010
Advice & Tips: I am taking a low dose of this because of kidney disease, so be careful of that factor. I am taking it for seizures, chronic migraine headaches, and essential tremor. It works best on the headaches, though it isn't perfect. Same with the essential tremor, although I can use my hands better and write my name well again. It has helped my daily life in that it has reduced the number and severity of most of my headaches, not all of them. I still get bad ones. So it's had a mixed benefit. I'd still choose to take it because it does give enough relief to be helpful.
Cost: < $25 monthly

**Purpose:** Seizures (grand mal or tonic-clonic) *(Started Jan 01, 1960)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
Sep 04, 2010	250 mg Daily	?Can't tell	Mild	Usually	Not at all

**Purpose:** Shakiness *(Started Jan 01, 2005)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
Jul 31, 2010	300 mg Daily	Major	None	Always	Not at all

**Purpose:** Epilepsy *(Started Dec 12, 1973)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
Jul 03, 2010	500 mg Daily	Moderate	None	Always	Not at all

**Purpose:** Cramps in arms *(Started Nov 10, 2008)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
Apr 13, 2010		Slight	Severe	Always	Somewhat
May 10, 2009	50 mg Daily	Slight	Mild	Always	Somewhat

Date: Apr 13, 2010
Advice & Tips: This drug just didn't do anything other than cause me to loose sleep

**Purpose:** Seizures (grand mal or tonic-clonic) *(Started Sep 09, 1984)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
Feb 11, 2010	4 x 250 mg/5 mL Daily	Major	Moderate	Always	Not at all

**Purpose:** Shakiness *(Started Jul 01, 2009)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
Nov 30, 2009	250 mg/5 mL Daily	None	None	Always	Not at all