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has anyone heard of DIAMOX?

Sat, 05/21/2005 - 17:44
Hi, my 7 year old son suffers from tonic clonic seizures as well as absence seizures. i was wondering if anyone has tried diamox because i was reading that it has less side affects than a lot of the other medications, his doctor recently wanted to change his meds and add topamax, but i refused to subject him to the side affects of that drug, some of which are irreversable i heard! he is on zonagran, epillim, and clobazam at the moment, And apparently Keppra isn't licenced for children here in the uk. i wish you all the very best.

Comments

RE: has anyone heard of DIAMOX?

Submitted by Sestrilla on Sun, 2005-05-22 - 12:44
Hello SusanI currently take Diamox for my tonic clonic seizures. My experience as far as side effects with it is that I can dehydrate easily. I also have a bad time in the sun, sometimes even pass out or very nauseous and dizzy when outside too long.I took Topamax for a few years and did very good on it...went 8 months without a seizure! I was having up to 10 a month before being put on it. The only side effects I noticed with Topamax was weight loss (which was a good thing for me), and sometimes drowsy...when my dose was too high I would even fall asleep in the middle of sentences. But once regulated it was great.My neuro took me off Topamax a couple of months ago and my seizures are starting back up. I am 34 and I don't really see where Diamox has helped me...I don't know if it would do better on a child or not. But...everyone is different and different medications sometimes have different effects on other people. Might want to give it a try for a short term and see what happens.By the way....what were the irreversible side effects of Topamax you heard of? I was on it for a long time and I'm kinda curious if I need to look for something.Best of luck with everything.

RE: RE: has anyone heard of DIAMOX?

Submitted by susan2 on Sun, 2005-05-22 - 18:11

hi, thanks for your reply, i am so confused by all the meds and side affects, its so scary! here are a few things i read about topamax and hearing that it can cause blindness, i don't think i can take that risk for my son, i wish i knew what to do.

Acute myopia with secondary angle-closure glaucoma has been reported in both children and adults receiving Topamax. Symptoms typically occur within 1 month of the start of treatment and include decreased visual acuity and/or ocular pain. Ophthalmological findings include bilateral myopia, anterior chamber shallowing, hyperaemia and increased intra-ocular pressure with or without mydriasis. There may be supraciliary effusion resulting in anterior displacement of the lens and iris. Treatment includes discontinuation of Topamax as rapidly as is clinically feasible and appropriate measures to reduce intraocular pressure. These measures generally result in a decrease in intraocular pressure. If increased intraocular pressure is suspected, immediate specialist advice should be sought.

 

 

Recent reports have associated a few cases of an uncommon form of glaucoma called angle-closure glaucoma with topiramate. Symptoms can occur suddenly and include blurred vision, headache, vision loss, and nausea. Immediate treatment is required.

 

Topiramate - Topamax®

 

Primary Use:  Topiramate is a novel agent used in various types of epilepsy and migraine headaches.  It is used “off label” as a “magic” weight reduction medication.

 

Clinical Concerns:  Recent case reports by Banta, et al, Rhee, et al, and Sankar, et al. have ballooned into almost 100 cases of a classic syndrome (submitted by Keates & Fraunfelder) unheard before in clinical ocular toxicology.

 

In the Registry series:

§         Patients range in age from 3 ? to 53 years

§         Ranging from 3 to 14 days after the start of oral therapy

 

WHO Classification:

Certain

Acute glaucoma (mainly bilateral)

§                     Anterior chamber shallowing

§                     Ocular hyperemia

§                     Increased ocular pressure

§                     Mydriasis

§                     Suprachoroidal effusions

§                     Visual field defects – acute glaucoma

§                     Ocular pain

Decreased vision

Acute myopia (up to 6-8 diopters)

Uveitis

 

Probable/Likely

Blepharospasm

Oculogyric crisis

Retinal bleeds

 

Possible

Blindness

Scleritis

Teratogenic – ocular malformations

 

Before the syndrome was recognized, the majority of cases had laser iridectomies or peripheral iridectomies.  We now know this is not the proper management.

 

Suggested Treatment

1.  Stop the medication

 

ABhouser
08/10/2002
C6

.

I am miserable. In light of sounding overly dramatic, let me clarify so that I am not misunderstood. I don't want unsolicited "hang in there, old gal" anecdotes. I just want to clarify as objectively, if possible, that I may have a valid reason for being so miserable.
Several months ago, I went to an opthomologist, and I had several concerns. I complained of a feeling of pressure behind my left eye, acute sensitivity to light, and my eyes, expecially my right eye not wanting to stay open. This was also combined with excessive blinking==intensity, frquency, and duration that affected my sense of well-being and judgement. His conclusion was, "Your eyes aren't broke.)
1. Recent studies suggested that Topomax contributed to (caused) glaucoma, and I have been taking it for well over a year. Originally diagnosed by my internist, as an adjunct mood stabilizer to go along with Wellbutrin and an appetite suppresant, my psychiatrist continued it when I appeared to be having positive results for bi-polar (mixed)affective disorder.

2. I have a tendency to make things rather complicated with excess verbage. Cutting to the chase:
I have since been diagnosed with benign essential bletharospasms moderate to severe; possible ptosis in right eye; and TMJ.
I have a constant sense of pressure changes and ringing in my ears. The neurologist suggested that the Wellbutrin might becontributing to the bletharospasms, so I went off of it.
I am taking Celexa for the anti-depressant.

3. No one will give me a definitive answer as to whether one of the meds is contributing to the ocular and cranial dysfuntion.

4. I'll be returning to school as a teacher and I have used akk of vacation type searchinggg

5. I am alos on Temazepam, Baclofin,and several other meds and I am practiaclly falling asleep at thte computer.

6. Tomorrow, I need provigil to awaken me.









GOOD OLE GAL
08/14/2002
C7

.

TOPOMAX IS A VERY POWERFUL DRUG. MY DR. GAVE IT TO ME FOR SEIZURES. EVERYTHING SEEMED OKAY AT FIRST. BUT, AFTER A YEAR OF TAKING THIS DRUG THE SIDE EFFECTS REALLY STARTED TO BE NOTICED BY FAMILY, FRIENDS, AND MOST IMPORTANT MY LITTLE 9 YR. OLD BOY AND MY HUSBAND.THE EFECTS WERE UNREAL I TURNED INTO A DIRRERENT PERSON VERY MEAN. MY SIDE EFFECTS WERE TINGLING SENSATIONS, CLUMSINESS,CONFUSION,VISION PROBLEMS, MEMORY PROBLEMS, NERVOUSNESS,COULD NOT PAY ATTENTION,LOSS OF APPETITE,AGGRESSION,VERY ILL,WEIHT LOSS NO SEX DRIVE, TROUBLE BREATHING. I AM NOW COMING OFF OF THIS DRUG AND PRAY FOR ANYONE WHO IS ON IT I HOPE WHAT I HAVE TO SAY WILL JUST HELP ONE PERSON. THIS IS NOT A GOOD DRUG.I WAS TAKING 400 MG. A DAY. HOPEFULLY ONE DAY THEY WILL DO AWAY WITH THIS DRUG. I WOULDNT WISH THE WAY I HAVE FELT ON ANYONE. BUT,I HAVE A WONDER FRIEND THAT HAS REALLY HELPED ME AND I WILL WIN THIS BATTLE. GOOD LUCK.

 

 

my son has been admitted back into the hospital again today because he has had 12 tonic clonic seizures since 8:15 this morning, i am just a scared and confused mother. best wishes to you all.

hi, thanks for your reply, i am so confused by all the meds and side affects, its so scary! here are a few things i read about topamax and hearing that it can cause blindness, i don't think i can take that risk for my son, i wish i knew what to do.

Acute myopia with secondary angle-closure glaucoma has been reported in both children and adults receiving Topamax. Symptoms typically occur within 1 month of the start of treatment and include decreased visual acuity and/or ocular pain. Ophthalmological findings include bilateral myopia, anterior chamber shallowing, hyperaemia and increased intra-ocular pressure with or without mydriasis. There may be supraciliary effusion resulting in anterior displacement of the lens and iris. Treatment includes discontinuation of Topamax as rapidly as is clinically feasible and appropriate measures to reduce intraocular pressure. These measures generally result in a decrease in intraocular pressure. If increased intraocular pressure is suspected, immediate specialist advice should be sought.

 

 

Recent reports have associated a few cases of an uncommon form of glaucoma called angle-closure glaucoma with topiramate. Symptoms can occur suddenly and include blurred vision, headache, vision loss, and nausea. Immediate treatment is required.

 

Topiramate - Topamax®

 

Primary Use:  Topiramate is a novel agent used in various types of epilepsy and migraine headaches.  It is used “off label” as a “magic” weight reduction medication.

 

Clinical Concerns:  Recent case reports by Banta, et al, Rhee, et al, and Sankar, et al. have ballooned into almost 100 cases of a classic syndrome (submitted by Keates & Fraunfelder) unheard before in clinical ocular toxicology.

 

In the Registry series:

§         Patients range in age from 3 ? to 53 years

§         Ranging from 3 to 14 days after the start of oral therapy

 

WHO Classification:

Certain

Acute glaucoma (mainly bilateral)

§                     Anterior chamber shallowing

§                     Ocular hyperemia

§                     Increased ocular pressure

§                     Mydriasis

§                     Suprachoroidal effusions

§                     Visual field defects – acute glaucoma

§                     Ocular pain

Decreased vision

Acute myopia (up to 6-8 diopters)

Uveitis

 

Probable/Likely

Blepharospasm

Oculogyric crisis

Retinal bleeds

 

Possible

Blindness

Scleritis

Teratogenic – ocular malformations

 

Before the syndrome was recognized, the majority of cases had laser iridectomies or peripheral iridectomies.  We now know this is not the proper management.

 

Suggested Treatment

1.  Stop the medication

 

ABhouser
08/10/2002
C6

.

I am miserable. In light of sounding overly dramatic, let me clarify so that I am not misunderstood. I don't want unsolicited "hang in there, old gal" anecdotes. I just want to clarify as objectively, if possible, that I may have a valid reason for being so miserable.
Several months ago, I went to an opthomologist, and I had several concerns. I complained of a feeling of pressure behind my left eye, acute sensitivity to light, and my eyes, expecially my right eye not wanting to stay open. This was also combined with excessive blinking==intensity, frquency, and duration that affected my sense of well-being and judgement. His conclusion was, "Your eyes aren't broke.)
1. Recent studies suggested that Topomax contributed to (caused) glaucoma, and I have been taking it for well over a year. Originally diagnosed by my internist, as an adjunct mood stabilizer to go along with Wellbutrin and an appetite suppresant, my psychiatrist continued it when I appeared to be having positive results for bi-polar (mixed)affective disorder.

2. I have a tendency to make things rather complicated with excess verbage. Cutting to the chase:
I have since been diagnosed with benign essential bletharospasms moderate to severe; possible ptosis in right eye; and TMJ.
I have a constant sense of pressure changes and ringing in my ears. The neurologist suggested that the Wellbutrin might becontributing to the bletharospasms, so I went off of it.
I am taking Celexa for the anti-depressant.

3. No one will give me a definitive answer as to whether one of the meds is contributing to the ocular and cranial dysfuntion.

4. I'll be returning to school as a teacher and I have used akk of vacation type searchinggg

5. I am alos on Temazepam, Baclofin,and several other meds and I am practiaclly falling asleep at thte computer.

6. Tomorrow, I need provigil to awaken me.









GOOD OLE GAL
08/14/2002
C7

.

TOPOMAX IS A VERY POWERFUL DRUG. MY DR. GAVE IT TO ME FOR SEIZURES. EVERYTHING SEEMED OKAY AT FIRST. BUT, AFTER A YEAR OF TAKING THIS DRUG THE SIDE EFFECTS REALLY STARTED TO BE NOTICED BY FAMILY, FRIENDS, AND MOST IMPORTANT MY LITTLE 9 YR. OLD BOY AND MY HUSBAND.THE EFECTS WERE UNREAL I TURNED INTO A DIRRERENT PERSON VERY MEAN. MY SIDE EFFECTS WERE TINGLING SENSATIONS, CLUMSINESS,CONFUSION,VISION PROBLEMS, MEMORY PROBLEMS, NERVOUSNESS,COULD NOT PAY ATTENTION,LOSS OF APPETITE,AGGRESSION,VERY ILL,WEIHT LOSS NO SEX DRIVE, TROUBLE BREATHING. I AM NOW COMING OFF OF THIS DRUG AND PRAY FOR ANYONE WHO IS ON IT I HOPE WHAT I HAVE TO SAY WILL JUST HELP ONE PERSON. THIS IS NOT A GOOD DRUG.I WAS TAKING 400 MG. A DAY. HOPEFULLY ONE DAY THEY WILL DO AWAY WITH THIS DRUG. I WOULDNT WISH THE WAY I HAVE FELT ON ANYONE. BUT,I HAVE A WONDER FRIEND THAT HAS REALLY HELPED ME AND I WILL WIN THIS BATTLE. GOOD LUCK.

 

 

my son has been admitted back into the hospital again today because he has had 12 tonic clonic seizures since 8:15 this morning, i am just a scared and confused mother. best wishes to you all.

RE: has anyone heard of DIAMOX?

Submitted by sophie3272 on Sun, 2005-07-31 - 13:39

Hi Susan,

Ironically, though a nursing student almost at the end of her schooling (and a young woman with fairly severe epilepsy), I had not heard of Diamox until about 2 weeks ago when I was reading one of my pharmaceutical texts for an internship in neurological nursing.  And interestingly at the same time, I went for a consultation with a new epileptologist who mentioned Diamox as a possible treatment option for me, since I've gone through about 95% of the drugs, and only two have worked when taken together - Topamax (as my primary AED), and Klonopin.  But I still don't have 100% seizure control; some breakthrough seizures weekly, fortunately not too severe.  I have been on high doses of Topamax (500 mg+ daily) for over 2 1/2 years, and my biggest complaint is that it sometimes interferes with my concentration/memory - but I'm still getting all A's in college, so I'd say I'm managing.  As for the vision problems, my neuroopthalmologist explained to me that (crude explanation) much of the vision problems have to do with the "depth" or "width" of the angle of where the cornea meets the (sorry - something else) of your eye.  The people whose angle of that intersection is narrow are more pre-disposed to have those vision problems.  An optometrist can look at your eyes and quickly tell you if you have a narrow angle or not.  For now I have chosen not to go on the Diamox due to its side effects...but then again, as you know, its a matter of picking your poison because there is no absolutely safe drug - they all have various side effects.  It's a matter of finding the one that works best for your son's situation, with the least harmful side effects.  I hope I've been helpful in some way, and certainly wish the very best for an improvement in your son's health.  --Sophie

Hi Susan,

Ironically, though a nursing student almost at the end of her schooling (and a young woman with fairly severe epilepsy), I had not heard of Diamox until about 2 weeks ago when I was reading one of my pharmaceutical texts for an internship in neurological nursing.  And interestingly at the same time, I went for a consultation with a new epileptologist who mentioned Diamox as a possible treatment option for me, since I've gone through about 95% of the drugs, and only two have worked when taken together - Topamax (as my primary AED), and Klonopin.  But I still don't have 100% seizure control; some breakthrough seizures weekly, fortunately not too severe.  I have been on high doses of Topamax (500 mg+ daily) for over 2 1/2 years, and my biggest complaint is that it sometimes interferes with my concentration/memory - but I'm still getting all A's in college, so I'd say I'm managing.  As for the vision problems, my neuroopthalmologist explained to me that (crude explanation) much of the vision problems have to do with the "depth" or "width" of the angle of where the cornea meets the (sorry - something else) of your eye.  The people whose angle of that intersection is narrow are more pre-disposed to have those vision problems.  An optometrist can look at your eyes and quickly tell you if you have a narrow angle or not.  For now I have chosen not to go on the Diamox due to its side effects...but then again, as you know, its a matter of picking your poison because there is no absolutely safe drug - they all have various side effects.  It's a matter of finding the one that works best for your son's situation, with the least harmful side effects.  I hope I've been helpful in some way, and certainly wish the very best for an improvement in your son's health.  --Sophie

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