Sick of it all

Specific Illnesses & Conditions VM/MAV
1

I’ve come on for a moan too be honest.

i have been on topiramate for about 4 months. After suffering all the horrible side effects that come with this medication I celebrated when my symptoms came under control and I felt like I had my life back.

This only lasted about 3 weeks though, and things seems to have just gone from bad to worse. I now am suffering not only with the vertigo I had before but now with the side effects of the medication. The worst of which being absolute fatigue and loss of appetite.

I went to see my GP last week as I had had enough. Since I was first prescribed the meds I haven’t been seen once by my doctor to check how I am getting on, they just keep giving me repeat prescriptions.

When I told her how I was feeling, and too be honest I did get a bit upset, she ended up telling me I was depressed and she wanted to give me anti-depressants.

Now if there is one thing I know it is that I am not depressed, I love my life, I’m lucky that I see the positive.

After I explained this to her she admitted that she didn’t know anything about topamax and wondered if fatigue might be a side effect, she checked her book and low and behold it is (I could have told her that before I went in). and the fact that some days I eat nothing at all can’t be helping.

Despite all this, her solution is to increase my dosage from 50mg to 100mg ( just gone to the 100mg today) and I am almost totally debilitated. I have a permanent headache, barely have the energy to move from the sofa (her answer - take time off work… I love my job, that really would make me depressed and stressed), can’t face food and upset stomach.

I feel like, even though I have been diagnosed by a neurologist with a real illness, when I speak to my GP they think I am making it up, just after attention, depressed. Does anyone else feel they have to fight this battle???

Why would anyone make this up. I don’t want attention. I don’t want to be ill. I don’t want to take tablets, I don’t want to be off work and I DON’T WANT TO SEE MY DOCTOR.

ARGHHHH… RANT OVER :evil:

Jo

2

Hi Jo,

Sorry to hear you’ve had such a rubbish consultation with your doctor. I agree, just because you feel upset and got tearful about your condition, it doesn’t mean you are depressed! Should we be diagnosed with depression every time we cry? Of course not! I also agree with you about staying working if you possibly can, as I did the same thing and know that for me I would have possibly ended up with depression if I’d stayed home and had nothing to think about apart from my MAV.

I don’t know what to say about the increase in your dosage, as I think you will probably get differing opinions from people on here, but my gut feeling is that if the medication is going to work for you then it shouldn’t be such a struggle to get over side effects. To me (and this is just a personal view) side effects that can be got over, are things like having a slightly upset tummy or a dry mouth or feeling more tired for a few days (up to a week or two) until your body gets used to the medication. Feeling terrible for weeks/months is not a tolerable side effect to me! When I found meds that really helped me, I found they were fairly easy to tolerate. But I know some people on here have found relief with topamax after increasing dosage (and despite side effects) so maybe some of them will chip in with some advice for you.

Take care.

3

I’m currently taking 100 mg of topamax and have the most control of my symptons than I have had for a long time. The sides effects have leveled out for me. I have been doing worse this week. I went back to work this week two hours a day after 6 months off on leave and also got very tired suddenly of mav telling what I can and cannot eat and ate chocolate twice. The first time I did Ok. The 2nd time not so much. Lesson learned. No chocolate.

I know the feeling of Dr.s not understanding. Left several dr. office’s myself feeling frustrated as they did not seem to understand my symptoms and I felt like they thought I was making it up. My primary care dr. was the first Dr. to mention Migraine’s to me but I believe it was only becuase I was getting bad headaches at the time. I don’t think he was relating it to the dizziness at all. He is a nice guy but when I first attempted to see him about this he wanted to blame this on depression as well. I requested he send me to a specialist who diag mav.

When I followed up with my primary dr. he called it atypical migraines( didn’t mav used to me called that). When I referred to it has mav he didn’t know what I was talking about. Much as I like and respect my primary care Dr. when it comes to this disorder I have come to realize I think I know more than he does.

Teri.

4

100mg of Topamax is working wonders for me, but it is not giving me bad side effects (so far). It makes me really dizzy for about 5 days every time I change the dosage, but by day 6 that has faded. The only lasting side effect is tingling in my hands and sometimes my feet when I exercise or otherwise use my fingers in some physical way (like massaging my scalp when I wash my hair). Oh, and it makes any carbonated drink taste terrible.

I wish I could tell you that the side effects you are experiencing will fade over time, but if you have been on the medication for a while and are still experiencing nasty side effects, that may just be how your body tolerates that particular medication. For example, Verapamil is supposed to be super-easy to tolerate, yet I got a terrible pain in my upper-left gut from it that made it nearly impossible for me to keep taking it. Luckily it wasn’t doing anything for me anyway, but it just goes to show that everyone reacts to medication differently.

I think it is gutsy of you to try out 100mg for a while to see if you tolerate it after a bit, and obviously it would be great if you did. But if it is still making you feel like crap after, say, another month or so, it probably just isn’t going to work for you.

5

Jo, here’s a different take.

Jamie and Mark have experience with topamax, and I don’t, so first off I’d go with their advice.

If it turns out that you need more help with your MAV from your GP, either because it turns out that Topamax just isn’t for you or for whatever other reason, I encourage you to level with your doc that you felt dismissed (or however you would phrase it) at your last visit, and want to find a more comfortable way of working together.

If you just can’t trust your doc to take you and what you report seriously, that’s a real pity. But in that case, I’d want to find a new doc.

G’luck.

6

Hi

Thanks all.

The last 24hrs have been bad, blinding headache, sickness, stomach cramps. I have an incredible sensitivity to light, MAV or the meds?? Yesterday lunch I developed a tingling sensation all over my face, lasted about 6 hours, that seems to have gone now, but the rest are still here. Can’t think straight, and even with my 100mg I still can’t walk straight either :wink:

My Doctor told me I had to try the 100mg before she would prescribe me anything else, so I’ve kinda had my hands tied on it.

Too be honest David you are right, I am not happy with the service I have received. This was already my second GP as the first laughed at me over my vertigo and told me it was “just an inconvenience”, I shouldn’t have to go through a multitude of doctors to find one who is prepared to listen.
I am going to write to my surgery expressing my concern at the treatment I have received and I am going to register a complaint with NHS trust that governs the area.

I am also going to start a petition on the Downing street website for increased awareness with all GP’s in the UK on balance disorders and the treatment of them.

It shouldn’t be such a battle

Jo

7

Jo, real sorry to read how miserable you’ve been.

This probably is something you recognize just as well as I do, but I’ll mention it anyway.

If I can’t think clearly, I can’t trust myself to make good decisions. Hence, whatever plans I make when my head’s a-spinning, I’m not committed to them. I simply am not as good at taking care of myself then as i want to be.

I really feel for the poor bastards on this board who simply can’t afford to take a sick day when they’re experiencing brain fog. Headaches and the dizzies are bad enough!

Cheers

8

Hi Jo
Understand your despair at trying to find a doc to treat you properly. Any chance of getting to see a specialist who knows about MAV? Sounds like this is what you need instead of doing the rounds of docs who have no idea how to treat this condition. There are several mentioned on the forum lists who have helped other forum members living in UK. Maybe post a request for suggestions? No 1 priority for you is to get the help you need ASAP.
Barb

9

— Begin quote from “jor”

Despite all this, her solution is to increase my dosage from 50mg to 100mg ( just gone to the 100mg today) and I am almost totally debilitated. I have a permanent headache, barely have the energy to move from the sofa (her answer - take time off work… I love my job, that really would make me depressed and stressed), can’t face food and upset stomach.
Jo

— End quote

Hi Jo,
so sorry to hear about your struggles.
I can tell you for me Topamax, can at times, and especially for a few weeks after increasing the doasge, make me headachy (whereas I normally don’t have any bad headaches), extra tired, feel more depressed, and supress my appetite! When i tried to jump from 25 to 50mg a long time ago, I fell apart emotionally - I was on the edge, and just couldn’t hold it together. The jump in dosage was too high for me. I returned to 25mg, and got to 50mg via a much slower route without any problem at all (30 > 40 > 45 > 50)!!

I must say, 50 > 100mg is a huge increase in dosage! I eventually reached 100mg, but I had to titrate much more slowly than the consultant’s initial schedule!

Hang in there - I wish you all the best, but don’t be afraid to do your own thing and titrate at your own pace! Also, get hooked up with a consultant who really knows the MAV monster!
Tony,

10

I didn’t even catch that. I would venture to say that 50mg is too large of a dosage increase for Topamax. I tolerate medication extremely well. I have a pretty aggressive doctor. He wanted me to go up 25mg of Topamax every 4 days. Just changing things by 25mg makes me very very dizzy for several days. I’m not back to normal until day 6. I’ve been up to 150mg of Nortriptyline and barely even noticed it, and even though docs usually tell me medicines are going to make me tired they almost never do. So I am not usually affected by medicines. Topamax is super-strong stuff. Even going up by 25mg is hard. I can’t imagine trying to do 50.

Has your doctor worked with Topamax before? I’m very surprised a doc who has ever worked with it before would have a patient change from 50 to 100mg all at once.

11

My doctor also increased me from 50 to 100 mg at one time which I came to understand is crazy. It was brutal. Spent mothers day weekend in bed this year. I was a zombie for days until I posted my difficulites on this wonderful forum and they told me how how big of a jump that was. After that I cut my pills in half and dropped down to 75 mil for two weeks. I did much better. After two weeks, then I increased back up to 100 mg. I now have the most control over my symptoms than I have had in a long time. Sorry, I failed to see in your earlier post the amount you were increased. I know what that feels like. As someone on this forum told me when I was going through it, you can cut back on the dose. I did and it worked wonders for me.

Teri.

12

I am a mess to say the least, I’ve been at work today and at one point I wsa worried I was going to get pulled into HR for being drunk, slurring my words, swaying, can’t focus, drifting off mid conversation. It’s laughable really.

My doctor openly admitted she had no idea about topamax, she checked he book and saw I was on half the maximum recomended dosage and told me to go to 100mg.

I did 1 week at 75mg, then went up to the 100mg on Fri so I’ll have been on the 100mg for 4 days now, but I was rubbish on 50mg and I’d been on that for 4 months lol :lol:

I can’t see for the headaches, and everything is so bright my eyes just want to be shut all the time.

She told me I had to do the 100mg before she would let me change to anything else, so I feel like I just need to stick it out, but on Saturday night I honestly wondered if maybe it was killing me. I know it sounds so stupid and melodramatic, but the pain in my head was so bad I couldn’t move, my face was tingling and I couldn’t look out the window the light was so bright. I couldn’t even look at food and every part of me ached.

Have I wasted these last 4 days if I drop back to the 75mg now? am I just dragging out the inevitable? After I went to see her because 50mg made me feel so poorly.

I just feel so lost like no matter what I do it wont get any better. I feel like just stopping taking anything and putting up with the vertigo, at least then I knew I wasn’t poisoning myself :x

…ThinkI need a slap and to stop feeling sorry for myself, Need to remind myself there’s alot worse off out there :slight_smile:

Thanks so much all for your advice and sorry for moaning sooo much

xxxx

13

Jor, are you having eye pain or other odd visual issues? Topamax has some rare but extremely serious side-effects involving the eyes that have to be taken very seriously. I know it is hard to distinguish between what is just the migraine and what is the medication, but if you are having constant eye pain since starting the topamax you should talk to your doctor immediately (or preferrably, a doctor that actually knows something about topamax!)

14

My eyes are aching, when they move. I just want to shut them and press them with my hands. And everything looks like I am watching it in HD. Everything is brighter, more defined, movement seems over exagerated, like in films when they are making out someone is one drugs, like ther is a trail behind things.

It is very disconcerting. I think I will call NHS direct in a bit as I just don’t think Topamax is for me, it shouldn’t be this much of a struggle, it is like I am on another planet

15

Not meant to cause alarm, just to inform. Here is what the US FDA says about topamax and the eyes:

fda.gov/downloads/Drugs/Drug … 152837.pdf

TOPAMAX® may cause eye problems. Serious eye problems include:
•any sudden decrease in vision with or without eye pain and redness,
•a blockage of fluid in the eye causing increased pressure in the eye (secondary angle closure glaucoma).
•These eye problems can lead to permanent loss of vision if not treated. You should call your healthcare provider right away if you have any new eye symptoms.

I don’t know if this applies to you or not, but it is probably worth checking with your doctor.

16

Hi Jo,
there are potential issues with Topamax and vision, as Jamie says. Some listed side effects are: blurred vision; double vision or other vision changes; (see drugs.com/sfx/topamax-side-effects.html for example). I have read of people reporting ‘ghostly trails’ in their vision when using Topamax, and I have seen an optician to have my eye pressure checked once when on Topamax, because I felt pressure behind one eye.

I would not be afraid to back down the dosage! I struggled like hell with Topamax for over a year, finally reached 100mg, then finally conceded that it probably wasn’t for me - I’m now starting to reduce my Topamax dosage - but all this is under the care of a very good MAV consultant.

You can absolutely improve - please don’t despair! But I would say, please - try and get yourself under the care of a proper MAV consultant, neurotologist, etc - someone who really understands MAV - not just a GP who openly admits that she has no idea about the drug (Topamax) she’s prescribing, and by the sound of it, MAV in general!

Best wishes,
Tony.

17

Thanks all

I ended up in the accident and emergency last night as the eye pain was unbearable.
They are confident it is nothing serious, just an unpleasant side effect.
The trail, brightness etc are photo phobia apparently a not very common but un serious side effect.

The doctor I saw though did say that clearly topiramate did not seem to be agreeing with me and the side effects I have been experiencing are the most extreme he has seen. He advisedmy dosage should not have been increased with the symptoms I had reported to ny Gp and has put my on a withdrawl plan. I’ll then have to move on to something else.

I’ll keep you informed on how I get on

Jo

18

Better safe than sorry. Glad it ended up not being a serious problem.

19

Whew.

What a relief.

Sorry your eyes hurt so bad, though.