Side effects of topiramate is driving me insane, some advice would be appreciated.

Treatment and medication
1

I was recently diagnoised with Intracranial Hypertension after having headaches for way over two years to a point where I litrally couldn't lift my head off of my pillow on a morning. I was in absolute agony. But I got to a point where it just became a normal thing. I was investigated under neurology around two years ago, and they passed it off as normal headaches after a CT scan came back normal.

I work in an opticians and realised that dizziness, migranes, light-headedness were becoming regular things as well as my vision becoming a real problem in my left eye when one of the optomertrists recommended they check up on my vision and realised I had a field defect and papilledema on my left optic nerve. He gave me an urgent referral to neurology.

The neurologist was convinced I had no problems, even after me telling him where the referral had come from, he still said he didn't know who had referred me and why. But said because it had been investigated before, to put it to rest he would send me for a lumbar puncture. He also said he would eat his hat if I had a problem.

I had my lumbar puncture and it came back that my CSF pressure was 37, and that it needs treating. I am now under opthalmology, and on medication. But I am not taking very well to the medication at all. At first the doctors put me on acetazolamide, and that put me in A&E. So they adviced me against that. Then my neurologist suggested Topiramate. The effects weren't bad at first. My GP recommended that I stay off work the first week as I'm not just on one floor and with some of the side effects, I may be a bit disorientated. It's now been 4 weeks and I am stll not back at work. I've lost nearly a stone in the last week from vomiting which my GP said will just be the dose (how quick they've upped it), I have no appetite, I just feel so dizzy and unsteady all the time and the tingling in my hands and feet are driving me crackers!! I just feel like I'm complaining constantly. I also find simple tasks like adding numbers up or just trying to remember simple things are becoming a problem. Has anyone else had an experience like this? I don't know anyone on this medication and don't want to keep bothering my GP.

2

Hi, I can understand your symtoms and concerns as it happened to me.

Firstly spend some time looking on the American sites to see that just how toxic this drug is seen to be over there. It is known as Topamax and searching under that will also bring you masses of information. 

Here they appear to disregard all this and seem to be happily prescribing it without considering the long term issues.

The American Federal Drug Agency also has information on this drug that has some amazing statistics in it.

Read the side effects in the box and then circle every one that you are affected with..........it will be a lot. 

I took the drug as part of a pain management issue. We told them at the time I had previous history with Gabapentin and Pregabalin (epileptic drugs) as well but they declined to listen.

I started the drug at the end of December 2012 and it was in January that I started the most horrendous and ongoing experience ever.

I took 11 tablets. Seven once a day and then it was doubled to two a day.

On day seven I stopped myself driving as I was dizzy and disorientated.

On day eight I fell badly. I could not see properly and had the tingling. 

Apparantly I was walking around holding on the the wall to keep balance and walking like I had Parkinsons.

I was white as a sheet and it was when a friend who was a medical professional came in that a halt was called. My GP was contacted and they were stopped immediately.

That weekend was awful, in bed and in retrospect all the symptoms of a stroke and I knew then what I know now I would have presented myself at Casualty as being concerned I had a strike.

I went down from a size 16/18 to a 12 in three weeks (in America they trialled it as an endocrine drug but gave up because of the side effects although the weight loss was amazing for the obese patients.

My eyes dropped by two points and I went into distance glasses.

I was and am and remain word blind and that is after months in Speech Therapy (Aphaisia and Word Blind is a common issue on the American sites.

I also remain uncoindinated with eye to hand and my text messages are not readable but cause a lot of humour.

I cannot raise my left arm fully and my hearing has dropped in my left ear.

My neuropathic pain stopped dead and did not come back for about ten months.

I battled hard to get help. First MRI brain was normal but not done at the time.

First neurologist told me she did not get my problem and thought that it was a fair swap pain for speech!!!

She went to the drug company on my behalf and saw us a couple of months later. In front of her was a large pile of information from the drug company and she showed me two sheets on recovery rates in five year old from the speech issues I was having.

I  was not particulary polite at that time and asked to look at the other information the drug company had supplied and she stated that the drug company had catargorically said she could not share anything else with me. !!!!!!! says it all but at that stage I did not have the energy to deal with it.

Battled hard with Pain Consultant and went into Speech Therapy.

Manages to control the stutter but it did nothing for the word blindness,

Battled harder and evenually got a referral to National Neurological Hospital UCH. Originally picked up by voice specialist but quickly referred into Neuro as vocal cords not working as expected.

Have now had another MRI brain, Pet Scan Brain, Pet CT Scan, Lumbar Puncture and very long appointment in NeuroPysch.

Problem is they now seem to think the drug has kicked off a hidden degenerative disease and seem hesitant to link the drug as being responsible. But talking to more junior staff and research fellows the drug is known to be a nightmare.

Apparantly hundreds of people are left word blind by it.

I now have a days dementia screening to go through and then we will talk to the Prof again at the end of the month and hopefully some decision can be made.

My husband (a healh professional) says I do not have dementia and It is just that I cannot say what I want to say.

I know it was the drug by the sequence of events and time scale. I know the drug company is keeping some thing quiet.

I ask each Consultant I come across if they have shares in the company!

My plan is to use the media to let the world know what has happened to me.

You are where I was. The reason the drug is built up slowly is because it is so toxic. You need to stop it now.

If you can circle your side effects on the drug information leaflet and you have loads (which you will have) then it must be a valid reason to stop.

Ask for a referral into a specialist unit as well..........UCH have been brilliant. Never doubted me once compared with local unit.

 Try to find a meditation group that teaches self healing meditation.

Mummyemw

3

I echo your sentiments completely. My only regret is that I didn't have the wonderful weight loss apart from losing some weight over a three year period when I was too ill to eat anything other than a bit of yoghurt! I want my life back, I'm still not word perfect after 18 months off it and I fear my sight will never be normal again. 

 

4

Listen to what DumDum said!! Stop taking it, it could ruin your life. I lost about 4 years because I couldn't function normally and I didn't realise, and neither did any of the drs realise that it was to do with Topiramate. The just thought I was menopausal!

5

Thank you for your reply, I just feel on my own. I don't know anyone on this medication so can't really ask how they found it etc. I am going to visit my GP again tomorrow but find it frustrating because they seem as though they are very limited. I understand it is a specialist area with it being IIH and everything, but if why not let me keep in contact with my neurologist then? Because at the minute I'm between the two! GP won't do anything without speaking to neurologist, so I'm just being discussed between the two. 

I just want to get back to work and everything but I am not really in a fit state at the moment.

6

It sounds like people are having a pretty similar experience. Did you find simple things quite difficult? Say for example, I was discussing money with my partner recently and found myself getting quite annoyed because I just couldn't figure it out, which isn't really like me (as said in my prev. post, I work in an opticians, so maths and general sums, etc, just come easily) and I just got myself in a bit of a mess. It's only been a month, but my partner and family members have seen such a change, they are becoming concerned.

7

Everything became difficult and communicating effectively is still hard work. Stutter if I try to control word issues or simply go for it with people that know I have a problems and none of it matters.

I ask people as I explain my problems to laught with me and not at me.

I simply also tell strangers that I had a stroke as the easier way to explain it all as well.

According to the statisitcs available on the FDA site in America I have a almost minimal chance of recovery because of my age. 

Remember I only took eleven tablets and almost three years later I am what I consider to still be a mess. I am a trained nurse, my husband is a health professional and we are horrified by what has happened.

Interestingly enough with my last pain management appointment looking a options he mentioned in passing that they are not using the drug very much at all.

You would not as a normal NHS patient get direct contact with your Nuerologist.

Your Gp's have not got a huge amount of knowledge in this area and are playing safe. 

Your best bet if you can afford it would be to see your Neurologist on a private basis as a new patient. This would give you almost an hour of discussion time and would not compromise the NHS aspect. This can be arranged really quickly as well but would probably cost around £200 depending on where you live.

The problem is each tablet you take increases the risk of long term issues.

You need a referral into a specialised unit or consultant with expertise in your overall condition.

 

8

Once again, I agree with everything DumDum (who is clearly not dumb!) says, including about trying to get a private appointment. A good example of my confusion was when I told a group of people that my friend had just had a baby. When they asked what it was, I had to hesitate, think for a minute and I said "The opposite of a boy" - I couldn't think of the word "girl" !!! The people who didn't know about my problems just started!!!

9

You will see, I wrote to laurajane and said you echo my problems.

I don't often feel like suing someone but I do over this!!

10

I have to agree with Congrave on the word blindness, take the approach that you have to laugh about it or would cry.

Biding my time on what to do next. Have a case for innapropriate prescibing based on previous history but have to prove that it was the drug first.

That is proving hard as it is equally possible that the drug has kicked off something else that was hidden.

I am actually more anxious to bring this drug into the public domain and to let the world know that it is being dished out like smarties here whereas in the USA there is a huge compensation industry behind what this drug has done.

As far as I can work out the NHS think it is wonderful but it is not. 

The original neurologist I saw withheld information from the drug company at the companies request and at the time I did not have the energy to fight it.

To me that is a red rag to a bull scenario.

Deep joy as well off to UCH next week for a days dementia testing as it is one of the things they think the drug kicked off.........my husband says I do not have dementia I just cannot say the things I want to say.

We are confident of the sequence of events and there is no other cause for what has happened.

There is no support group either in the UK which is laurajane feels so isolated as I did as I battled to come to terms with what happened and the denial I felt at the time....................now off to eat a horse as had a stomach bug last week and am battling to get the weight back on. Have real issues with my weight that are ongoing and struggle to maintain my weight. Fighting hard not to have to buy a size 10 wardrobe and have finally relented and thrown out all my large size stuff from before this nightmare xx

11

As I said before, weightloss wasn't something that happened to me - I wish it had. My Dr. thought I had depressive dementia. No GP I saw (at least 4) would accept that it was a problem and no just my age (58)!

 

12

LeaLea to Dumdum!!!!

I'm so glad to have read someone so brave to put a Doctor in his or her place as you have here in the reply to Laurajane!!!

So many of us live our lives growing up trusting people of High Authority and our Education without regard to any history on them at all. This right here is about all we have to go by when it comes to a certain Doctor or Medication or Treatment is word of mouth. Unless there is some large class Acton Suite against the company that made the drug or the specific Dr. that gives the drug out like candy knowingly, after its been Acknowledged by the FDA, that it's bad for people, we are almost flying blind and putting our lives in the hands of someone else to care for us!

I've been "undiagnosed" with numerous back, spine, nerve, muscle, joint, & (SEVER PAIN) Issues for over 3 years now! I know for sure I have L-5S-1, spondy something, bulging discs, degenerating disc disease, neuropathy, gait, arthritis, etc. With all that said on a whole different path I also suffer from migraines!

I've been on various meds for my back off and on but the longest and most recent regiment and most effective has been, Gabapentin, Flexeril, Norco.

Recently, I moved to Jackson, TN 38301 area. Im finding this was the biggest mistake health wise I could have ever made! I started seeing a PCP here that upon my first New Patient visit Immediately did every major test possible, "I thought it was because he cared," it turned out that he wanted to get all he could out of my insurance while he could.

This Dr. Then stated on to what I call, use me as a lab rat! He asked me all the questions he was supposed to but didn't listen to a darn thing. Well maybe he fine tuned his station into what channel was best for him. One of the test taken that day were an EKG. The results of that test came to me at the very end of the 3 hour office visit, after all the rest of the test in his office for his Dr to patient plan. The Dr. Says I'm going to have a massive heart attack if I don't get on a Beta Blocker right away! He said my BP and HR was sky high and he's got to get it down! I also told him about my migraines and he gave me Topamax 50mg 2×day for those, I'm at that point being a little Anxiety because my pain is not being treated properly down here or controlled so he gives me Buspirone for that!

The point of this all....

One, I've never had high BP, HR ever anywhere even in high pain or while giving birth!!!! I just left another Dr. office that day literally right before that visit and all was perfect as usual. This immediately left me skeptical! Two, after a few days of careful thought and some research about the Dr. No bad actions against him or negative reviews, looked up side affects of all meds all say the same weird side affects as most meds I'm already on! I decide to trust the Dr.

Man!!!!! Heart Pill... made my heart almost completely so beating, felt like I was suffocating and going to die! WEENED OFF within three days!!!

Buspirone... Swelled up like a balloon all over including mouth throat feet angles etc. crying uncontrolled, other wired unnecessary unwanted don't help affects!!! Totally all bad on the market for Anxiety no one likes it for that!!!

Now, Topamax... I've had major Neurological changes going on that I nor my Neurologist has an answer to. He obviously thinks I'm (CRAZY) then sends me to a surgeon that also thinks I'm (CRAZY) they both say by the looks of your imaging LOL all these problems your having can't be related to your back! Well listen up if it's not my back then it's something else!

Until now, and this Topamax plus my usual regimens of the different pills, they are the only thing left that I take; I'm looking at all of this and doing some more heavy research and some of my Neuro issues that are new may very well be tired into this drug!!! Im mad at myself for not thinking further that if this qwack Dr. Who gave me the other two have me this one it's probably no good eather. I just had no more head achs from taking this now I'm on the market for something new!! I also left that Dr. I found a place much better to go to.

Yes! I agree there are major affects from this medicine and people should be warned!!! I'm loosing vision (distance) I'm very tired all the time, Moody, having some memory impairment, Major Neuro problems in limbs like twitching, tingling, hot, crawling, hands dropping things, jaw tiredness while chewing, remembering words, I literally forget what I am doing in mid action, clumsy dizzy spells etc. That list can go on!!!

I am a taller so I'll end this with I hope that all these comments are heard by the right people and they take a second thought about these meds and take value in their own life because there is something definitely going on in the health dept/ industry they aren't telling us. Mass kill control, Mass Zing Control IDK best of luck to you all. Im done with TMax!!!!

13

I didn't get the awesome loss of weight blessing either!!! I gained 38lbs in 3 months because all in that time frame I had a full Hysterectomy, started on the new meds all basically not needed in the type given or period! One, a Beta Blocker, Two, an anxiety med, and Three, the Topamax! Not sure witch med med made me gain weight but it definitely wasn't the surgery because I lost 20lbs with immediately! Anyway, for me it would have nice to have at least two plus sides to Topamax as it is controlling my migraines! However, I'm now learning all of my new and really bad Neuro problems may be because of this med and I'm getting off this med NOW!!!!!

14

It might be controlling your migraines but !!!!!

I am about to go back up to National Neurological Centre next week for my annual review. They are concerned enough to want to keep me for ten years and all based on the taking of eleven tablets.

I remain word blind and struggle with reading and writing etc. The permnent tiredness is a nightmare, and at the end of the day with having concentrated hard to concentrate on communication we are down to hand signals indoors rather than talking

The fact that the drug company witheld information from me via the first consultant makes me think it is a potential time bomb waiting to go off,

15

Wow you guys are scaring me. I have been taking topamax 50mg 2x a day for about 2 months now for migraines. My hands and feet are a little numb I am losing weight and the migraines are gone. I am experiencing a little difficulty finding words but its not that bad. I am taking a online math class and doing well. I will have family and friends keep a eye on me so I don’t start to lose it now that I know what to look for. I am sorry you guys are having such trouble with this drug.

16

Memory impairment is common. Some people once off didn't realize how much it had effected their mind. Some people jokingly, or not, call it dope-a-max for that reason. That was my experience as well.

17

I've been on it since February and I hate it. They are trying to up my dose. I have had nothing but problems over the last 2 months. My neurologist is giving me an alternative. It has messed with me emotionally and mentally I tried upping it but I got really bad with my emotions by body couldn't handle it. The tingling and numbness has never gone for me. I get ringing in my ears and blared vision all the time. I had a lumber puncture 4 years ago and I've begged for another one as I didn't suffer with a migraine for 6 months afterwards but each time I am refused even though I had pressure. The same as you I have IIH but the pressure has not been too mad to them to do an LP. Hope you got sorted x