Topiramate 25 mg.....Topax is the brand name

My sis has Mav… the neurologist prescribed her Topiramate 25 mg…Topax is the brand name. and Meclizine for her bad dizziness and headaches… Mostly her Dizziness is driving her nuts 24/7 …The neurologist prescribed these med she said should work within 1 month that’s too long…Is there a pill for her dizziness within a 1 day to work. Geez…Help! :frowning:

Hi, I feel for your sister. Where in the US do you live? I saw your posts on the other site. It is important to find a Dr. who knows this stuff. My Dr. is not an advocate of using meclizine, however, they all have different opinions. Does she have other symptoms besides the constant dizziness?

I live in Tx… Migranes shes had them at the age of 16 now 46 …My sis says that when she sits down no dizziness its when she gets up she feels it… sometimes she says her left cheek feels numb… They ruled out Ms… :expressionless:

I am not sure of Dr.'s in TX–you might want to check out the link about specialists in the U.S. I’ve just started with this myself (since February). Tingling on my face was a symptom I also had. It felt as if I had been outside in the frigid cold and my face was numb. It may just take time. I did not feel “drunk” but from what I’ve read of other people’s experience, that is very common. If she is taking the meclizine–that may be giving her that feeling. Meclizine can make you very tired and loopy. What I have learned from this forum is that although we all share many things in common–we all still have different reactions/symptoms etc. My doctor has advsed identifying my triggers first. (He wants me to try it without meds first.) So, I have been trying to do that. I know I have certain triggers (monthly hormones, hunger, dehydration, stress) however, I find it hard to pinpoint the food. I have cut out Peanut Butter and OJ for almost two weeks now. I have had a few good days in a row (knock on wood) so do I believe that perhaps PB and OJ are triggers for me or would I have had these good days anyway? I will at some point test the theory–but not anytime soon. I am hoping and praying the good days stay.

Also, watching TV, reading and loud noises made things worse for me at the beginning. See if you sister can identify anything that makes her symptoms worse.

Your sister is lucky to have you advocating for her. It is important to have great support during this illness. I would read the Q&A with neurologists on this site, the survival guide and the success stories–each give great insights into what is going on.

Hi, it’s Kathy again :slight_smile: carried over from the other thread!

I completely understand what she’s going through. We all do. Back in January I was thinking that I was never going to be normal again! I’m an anxious person anyway (funnily enough, turns out that was MAV related) so know how frightening it all is. Anyway, I’m coping much better now, she will have ups and downs with this, when I first joined the site that idea frightened me, but it is manageable. After seeing my neurologist I felt a lot more confident, he explained the different options very clearly. So even if this med didnt work there are lots of other things she could try.

Ok, I’m going to post the important info in my letter from Dr. Silver. You may know a lot of it already! Please note that this letter was written with me in mind, my main symptom being dizziness, however I do think this treatment is similar for others. Obviously dosages may change according to height/weight, existing conditions etc.

Initial dose: 25mg, increasing every 2 weeks, in twice daily dosage, by 25mgs according to benefit and side effects. If side effects occur even at a low dose, an alternative preparation of 15mg paediatric sprinkle capsule can be used, increasing by 15mg each 2 weeks.

Initially aim for a dose of 50mg twice daily.Some patients may require a higher dose, max dosage can be anywhere up to 250mgs twice daily, assuming it is well tolerated.

Aim for max tolerated dose or one that completely suppresses all headache (28 days of the month crystal clear headache free days)

Approx 1 in 5 patients taking topiramate experience significant memory difficulties (slow thought processes) and/or problems with speech. If any of those side effects occur the drugs must be stopped. These side effects typically disappear within 2-3 days.

A small number of patients find their mood changes as the dose increases or with time, causing increased irritability, aggression and/or depression. If this occurs, the dose should be reduced or if necessary stopped.

However, he does go on to say that most people tolerate Toprimate quite well :slight_smile:

Higher doses usually cause some degree of tingling in the hands or feet. Such tingling is usual at effective doses of the drug. It is not usually troublesome and often settles over time.

If side effects of tingling are poorly tolerated, then usually a small dose of potassium citrate can be helpful.This is not usually necessary.

As the dose of Toprimate increases some people may occasionally note loss, or alteration, of taste and reduction of appetite. This may cause weight loss, usually 10% of body weight loss.

He continues to talk a out side effects:
Extremely rare: acute angle closure glaucoma. If patients develop a painful red eye with sudden visual disturbance they must seek urgent attention. They need the ocular pressures measured.
Rare: increased risk of renal calculus (kidney stones) If there is a history of this it may be necessary to consider alternative meds.By drinking plenty of fluids during the day the risk can be significantly reduced.

Toprimate may reduce efficacy of progestogen and oestrogen containing oral contraceptives. Advise the use of folic acid 5mgs daily whilst on this med in case of unplanned pregnancy.

Wow!!! Didn’t mean to type it all but thought I may as well!! You may get something from it.
He also recommended that I drink 3 litres of fluid a day. Cut out caffeine, and go to bed and wake up at the sane time each day. He strongly advised not to smoke and to not take any painkillers. Although in an emergency you could. (5 times per year)

I hope the side effects are not too scary! I do hope it hasn’t had that effect! A copy of this letter was sent to my GP so it has to be extremely thorough. When I read the possible side effects I was a bit alarmed! However, I would focus on the fact that most people tolerate these meds pretty well.

I was sent for a lot of blood tests, which I’m sure your sister has also had. Please check with your neurologist before you make any changes to meds! These are just Dr Silver’s thoughts for me.

Love to your sister. She will improve but it does take time.
Kathy x x

God Bless Yall… May this illness fade away in time… Keep Hope, Faith, Courage, by your side… :smiley: