Day 4 of topiramate and desperate!

Hi.

As some of you may know I started topiramate on Monday at 25mg each evening. I’m also on 100mg dothiepin and 400mg Lyrica.

I happened to start the Top just after a bad MAV bout started. Now I feel awful. The migraine and dizziness are worse than ever. I have slight nausea which is manageable.

My problem is, I don’t know whether the Top’s making the MAV worse and I should therefore quit (or maybe not?) or whether this is just a ‘normal’ MAV attack independent of the Top. I’ve been off work for nearly a week and can’t afford to be off any longer as it’s a new job. But there’s no way I can function feeling like this. I can barely move from the sofa and, just as I was during my previous big crash, I am unable to function as a mother to my two girls who really need me!

Do I quit the Top or persist?

Dizzy Lizzy xx

Sorry to hear you are feeling so rubbish.
But I would really try to stick it out for at least a couple of weeks, if you possibly can. I know from taking other things myself that I’ve often felt worse to start with, but have ended up having a big benefit once I got used to them.
It’s particularly hard with topiramate, as it does have a long list of side effects, some of which are serious. But of course, like you say, you could just be having a bad MAV spell which would be happening anyway, regardless of whether you are taking this new med or not. I suspect you may well be right.
So… my advice is, 1. try to stick it out, 2. do not Google side effects of topiratmate, 3. remember that a lot of people tolerate it well and most importantly 4. remember this medication could be THE ONE for you.
Take care x

DL
Lots if people say Top makes them worse before better. Is it possible you can start even lower? Maybe 25 is too robust to begin with?
If you do a search on this forum, there are many who got better after feeling lousy for a fairly long time. Just depends if you can get the side effects tolerable till you get to a therapeutic level.
Best to you,
Kelley

I’m thinking the same thing DL. For some people, starting at 25 mg is a huge amount. Some migraineurs can handle it while others need to start much lower. Of course you may find out that you cannot tolerate it at all or it might be a silver bullet.

I’d cut the dose in half or even a quarter to start. Concerned about your new job. We need to get you on your feet again. I know how much this sucks with new work. How bad were things without Topa?

S 8)

So sorry to hear you are feeling so lousy. I absolutely had increased dizziness when I started topamax–search for the thread Topamax and increased dizziness? If I remember correctly, the worst of it went away after a week or two.

I encourage you to stick it out if you can, but I know how tough it can be to get over the hurdle of these side effects.

You can definitely split the tablets with no issue, as I did and my pharmacist said it was fine.

Sending you calming thoughts for a quick recovery!!

This is the thing. Since the Lyrica stopped working the MAV attacks have got gradually worse I think. It may very well be that I’d be nearly this bad any way, even if I hadn’t started the Top. The nausea bit is actually tolerable, and I can’t believe the Top would cause the same symptoms as I usually get only worse! I reckon I’m having an ultra bad MAV attack and the Top’s getting the blame.

I have taken some clonazepam to help me cry myself to sleep. Bloody hell this is hellish.

DL,

Here’s some things you have to consider and I think you know this anyway. You might be right in that Topa is not causing any of these current symptoms. Given the situ you described earlier, that could easily be setting you off. Stress and poor sleeping patterns are the top big triggers as you know.

It’s even entirely possible that Lyrica had no real major effect and that you had instead entered a spontaneous remission. Migraine symptoms can be unbelievably and unexplainably variable. Things (stress) occurring in your life (triggers) could have set it all off again which made you think Lyrica stopped working. This is possible as Baloh explained in the interview I transcribed last year.

I wish you could create an environment that greatly reduced your stress levels. I’m not sure what the answer is for that. Have you ever tried yoga, some sort of relaxation technique or meditation? These sorts of interventions are very good for reducing frequency and severity of attacks.

Hang in there. S 8)

— Begin quote from "DizzyLizzy"

I have taken some clonazepam to help me cry myself to sleep. Bloody hell this is hellish.

— End quote

I’m so sorry to hear this! Your stress level must be incredible. Good luck dealing with this - I sincerely hope you can find a way to reduce your stress.

Cat

I only lasted under a week on Topamax, I got very bad eye pressure and also some really weird thoughts. I would say do what feels comfortable. Maybe wait a few days to clear your head and then go on it again.

I also have two girls and I understand how hard it can be to take care of them with this condition. When I get home from work after slogging through the day with MAV, the girls are all over me, wanting to play games, tell me about their day, climb on me, show me their artwork, and of course there are the usual struggles to get them to eat, bath, dress for bed, stories, teach them to play computer games, play tea party and princess games etc. One of the hardest things about this illness was getting them to understand that there are times when Daddy just needs to be left alone in a room to sleep. I have sat them down and explained my condition to them, and I think they understand some of it (they are both under 5 years old). I still feel horribly guilty about the time I miss with them. But luckily my wife is very understanding and picks up the slack, and has never complained about it. My wife is great. My ex-wife, that was another story: remember those journalists who got stuck in a North Korean prison last year – they got off easy compared to my first marriage.

Get some sleep and have a good day tomorrow. You have support here.

Thanks everyone for your kind and helpful replies.

This morning it’s another beautiful warm and sunny day here. Dh and the girls have gone off to a christening and I’m at home in bed still with the pain and dizziness. I do think that stress is and has always been (apart from the hormonal thing) my main trigger and Lord knows I am one stress-head!

Scott, I’m convinced the Lyrica helped me as I could almost feel it working on my brain. Each time it stopped working I’d increase a little and it would work again, so I’m sure the effect was not coincidental or placebo. I do however think I maxed out and got so utterly stressed again. I can’t afford to lose my job. Ive not been very good with the stress management recently. I used to do yoga, Pilates and mindful meditation. Now I dont have time! But I need to, I know.

Anyway, once again, thanks everyone. I’ll try not to wallow in too much self pity today and I’m going to keep with the Topiramate for now.

D - L

xx

Dizzy Lizzy - just so you know I answered your PM before I saw this.

Please don’t be sad - you are strong as you’re dealing with this - you will get there.
In terms, of the topiramate I think you need to try and give it a bit longer if you can. Dr S likes to try things for 4 months before you know for sure if they work. I have read that if the side effects are bad then you can have a 15mg paediatric sprinkle capsule instead of the 25mg.
With all the stress you’re having it could be nothing to do with any of the tablets, but just a flare up that won’t go away because of the continuing stress.
Take care x

D-L,

Bless your heart, I’m so sorry you’re going through this. Being the primary wage earner is yet another stress you’ve got on your shoulders. Kids can be a lot of fun and a source of great joy, but they are also tiring and tough to deal with when you don’t feel well and that certainly adds to the stress load.

As the others have said, stress is a major migraine trigger and you’ve got that in your life big time. Managing it is going to have to become a priority because medication alone can’t do it. You probably don’t have time to do long sessions of any one stress management technique, but I think you know that quantity isn’t as important as consistency. Short bursts of deep breathing or yoga stretches or meditation on a regular basis will do wonders if you do something on a daily or near daily basis.

I’m one of the lucky ones that Topamax has helped - I hope you join the club!! :smiley:

Take care, and hang in there.

Oh my goodness, I’m so sorry you have additional stress to deal with on top of your job stress.

I’ll just echo what has already been said–stress reduction is so critical. I’m coming off a very stressful month at work myself, and have not been feeling well the past 2-3 weeks while prior to that had been feeling great on topamax. I know I can’t fault it to a setback in the med not working because my triggers have been upped a shitload by the increase in stress/anxiety at work.

I hope you can find a way to reduce the stress and anxiety levels you’re experiencing–I know that would help you tremendously!!

Hi Dizzy Lizzy - I am pretty new to the board but just wanted to send some good thoughts your way!!! Sounds like you have been having a horrendous time on so many fronts. Hang in there - it takes a lot of courage, strength and perseverance to battle this in the face of all these challenges.

Please take care of yourself and I hope you can stick out the Topamax if there is a chance it might work for you.

Alli

Hi DL -

Maryalice said: As the others have said, stress is a major migraine trigger and you’ve got that in your life big time. Mangaging it is going to have to become a priority because medication alone can’t do it. You probably don’t have time to do long sessions of any one stress management technique, but I think you know that quantity isn’t as important as consistency.

I think this advice is right on the money. I’m probably totally naive here having not had any kids (yet) but start to make stress management a priority. It’s more important than the drugs you’re taking. I know with me it doesn’t matter how much med I’m on, if I’m stressing constantly, I’m totally sunk. The 800 lb gorilla always wins until I rein it in. I know how damned hard that is though when the stress is not your own doing.

S

Hi there Dizzy Lizzy, I’m so sorry you’ve been going through this hell … I am a MAV sufferer too - had them for 12 years but was only diagnosed a month or so ago & started taking Topamax about 3 weeks ago. Like you, I started on 25mg daily & almost immediately I felt awful dizziness, fatigue & nausea & my tinnitus was much louder, which was almost identical to the symptoms I have when I’m having a MAV episode. This was also accompanied by hideous depression & a feeling of pressure inside my head. I am a fulltime performing arts teacher of 4 -8 year olds & had to conduct some big performances with the children during my first week on Topamax & I really don’t know how I got through it without passing out &/or going totally insane!!! It got to the point after 2 weeks of taking the Topamax where I felt I just couldn’t go on feeling this way so I emailed my neurologist & she suggested I halve the dosage which I did & immediately all the “symptoms” eased up - they were still there but were significantly decreased in severity & quite manageable. I have now been on 12.5 mg for just over a week - last Weds I came down with a massive MAV & it made me think that the initial dizziness, fatigue etc were side-effects rather than an actual MAV.

Anyway, I went & saw my neurologist whilst I was in the midst of the MAV & she said encouraged me to stick with the Topamax if I can as it has had the best results of the anti-convusants for people suffering from vestibular migraine/MAV. She explained that if it is going to help me it will take time so I have decided to hang in there. The MAV has just started to ease up & I am starting to feel “normal” for the first time in ages. The 12.5 mg Topamax is fine now.

So Dizzy Lizzy, I would encourage you perhaps to consult your doctor about taking a smaller dose of daily Topamax & upping the dosage slowly.

I send you much support, strength & courage to take each day as it comes. Take care. xx Amanda

Hi everyone

Again thank you, all of you, for all the support.

Today I managed to go downstairs and have breakfast with the family but unfortunately I had a dizzy spell after looking up to get the cereal from the cupboard and felt nauseous too. When I sat down at the table I said something like ’ oh dear, I’m having a spin.’

What exactly does one do in this situation? I’m really sorry to say these words but I have reached rock bottom.

Oh dear, DizzyLizzy this is terrible. I can’t believe you are going through this.

While it’s small comfort please be assured that your friends here at mvertigo DO understand that your illness is very real, that we understand that the extra stress of trying to pretend you are well in front of the children WILL make things worse for you.

So sorry you have to deal with all this.

Vic

Dizzy Lizzy,

It is awful that you are suffering the appalling symptoms we all struggle with.

Is there anyone close to you who you can ask for help & support? If not, please please go & see your doctor & let him or her know what is happening. You need support in this. You are extremely vulnerable being so dizzy & starting on Topamax as well. I don’t know what else to say except please get some help.

Take care. Hugs from Amanda xx

So many thoughts are swirling in my head.

You need to be healthy yourself in order to be there for your girls in the way you probably had dreamed it would be before MAV hit. It honestly does sound like the best thing for you right now is to get into a supportive environment where you can rest and heal again. See your doctor and tell him exactly what you’ve told us and have them document it in your files.

You’re a good mom, and don’t feel otherwise. Just know that you need to take care of yourself to take care of them. I know how hard it is to care for young children with MAV, many of us do, and we’re here for you.

Big hugs to you!!!