So the topamax has made my life so much better. I am not sick every day, don’t spend most of my life sick to my stomach, woozy and off balance–but after spending about a full week in barometric HIGH HEAVEN topped off with two days of gorgeous blue skies and sun the clouds came in–and so did the spinny sensations and the turntable tummy :roll: . It wasn’t overwhelming and to bed sending as it has been in the past, but a reminder that without meds–this “thing” is still there.
On the one hand I thank the heaven’s for preventatives–and this site, as I’d have never made it to the 100mg without the support of you guys–on the other, I wish this curse had remained in whatever box it came from.
For those of you just beginning your journey toward getting better–know that IT DOES GET BETTER…but it does take time. For me, it has been nearly a two year journey with lots of ups, downs and plenty of mental arguments over whether or not the meds were “working or not.” It took nearly 6 months for the Topamax to be worth the side effects. Now, I barely notice the side effects, but the pay off is fantastic.
Just checking in with an update. Hope everyone is doing well.
Good to hear of someone doing so well… It’s quite rare of someone recovering to continue to come back and post on forums, you normally are just left with the bad stories which can give a bad perspective to things!
Blue Skies and Sun !? Where on earth have you been ?
I’m just at the beginning of my Topamax (Topirmate) journey, struggling at 25mg but only on my first week. Have been advised to alternate the 25mg over two days now, so effectively halving the meds. Hoping this will at least allow me to do a bit more, everything apart from walking round the block seems to set off motion sickness at the mo.
Keep the good news coming and I hope the good health stays with you.
wonderful news…and thank you so much for sharing! i agree i think that most people who start to do well disappear and only come on here to complain which makes things seem really bad…
would you say you are 90% on average? how bad is your worst day now %, and what was it before the meds?
that’s interesting it has taken this long for the topa to really kick in…the guy who had a success story on here, rich, posted something similiar.
I’ve been dealing with MAV for nearly 2.5 years. I started topamax and had to do the 12.5 mg at a time stopping at 37.5 mg and staying there for a couple months and again at 50 only getting to 100mg after a YEAR. I work in a job that requires you to be quick with your brain and your speaking, so the slowness was a problem–and the swiss cheese thoughts were just no good for me–I was a very VERY hesitant patient. I noticed improvement (marked) at 50 mg though and was determined to make this work. The side effects of the topamax DO SETTLE DOWN and nearly disappear over time (except when you are really tired) but it requires patience and fortitude to get through the adjustment phase.
I’ve been doing really well (dizzy and stomach upset out of the blue) wise for a few — about four — months now. I’d say I’m at 85-90% now, but I had become so deconditioned from not excercising and such for so long it will take awhile to get all that back, and I have to take that slow, because too much too soon is a trigger. Before I was “figured out” as migraine brain though I was just sick all the time, and tired, and dizzy. I was able to work (I have an office job) but other than that I was fairly useless. Up, to work, home–to bed, repeat cycle.
I think my biggest problem, migraine wise, now is the working back up into shape–and the fact that overdoing it in the process can cause some rebound migraine effects. Sitting life “out” for two years means that you don’t just get back on your bike and ride 2 miles when you feel good again. It means riding for maybe 10 minutes and then resting and THAT IS HARD when you think you are ready to ride 2 miles!!!
that’s great that you stuck it out despite the side effects. I forget if you said this but did you have any trouble walking and did it help with that? Are you walking now more for exercise? Did you try any other mav meds besides topamax?
I could always walk–though I felt off kilter really badly in the beginning. Pulled to the left, like I needed an alignment, which is what started me off to the Dr thinking I had a brain tumor in the beginning!!! Of course, they never found anything–blah blah blah–you all know those stories, they are posted all over on here.
I don’t feel off balance much any more, except sometimes, like the other day with the weather shift, when I felt the world move a bit, and my tummy turned and I felt a bit like I was on a boat. Nothing like the “old days” though. I’m hoping this is the new “normal” with some shakiness but mostly good. I wanted to touch base with those of you still struggling through the yuck though. It helps to know that there is good at the end of the tunnel.
Oh–yeah…I did try Nori for a bit–it dropped my BP so low I could barely get vertical without falling over…so they dropped me off that quickly enough. Then the topamax–which I was determined to make work if I could. So far–I’m happy with my choice. Never did lose any weight though–the ONE side effect I was hoping to have occur–of course :roll:
Hi Dolf
Thanks for posting your update - great to hear your ongoing ‘good news’ story! I’ve been following in your footsteps and taking the slow path - not quite so slow as yours but being retired have ‘allowances’ for my brain not being so quick as it used to be! Anyway I have achieved the 100mg Topamax goal this week (5 months since I started) and as you say, it does take patience & fortitude to get through the adjustment phase.
How long have you been on the 100mg now? Has it ironed out most of your problems? I agree - it will take some time to recover the fitness levels we had prior to this condition and possibly not at the same level while still taking medication. I still have quite a few issues to deal with - the visual vertigo & motion/travel issues particularly. I’m hoping these may settle after a few months.
Today while driving I had a “Depersonalisation” experience as though I was disconnected & observing myself from what was actually happening. I thought it would just go away in a few minutes but after half an hour it was still there so I got my husband to take over. It remained with me for the rest of our drive - another hour. I haven’t experienced this before and wonder whether it is a side-effect of Topamax? Haven’t looked it up yet but it all seemed so strange - like being in a dream! Has this ever happened to you? :roll:
Barb
This is one of the symptoms I have 24/7 since my relapse last year, I had it during my first spell of Laby as well but it completely cleared up during my remission phase. It seems that some people have this only when they have a migraine attack, some 24/7 and some not at all.
I believe Topamax is actually meant to help with this symptom, which is one of the reasons I want to stick with it. I saw an article on a website which had it in the top 30 meds for treating “derealisation”. Anit Depressants were 4th.
When I spoke to Dr S about the dream like state, living in a bubble, etc, etc… he knew exactly what I was talking about as he had heard it all before. It is unfortunately a symptom of Migraine and not I believe a side effect of Topamax. I really hope this was just a fleeting moment for you as it’s probably my worst symptom and makes socialising and concentration very difficult. I can only drive short distances.
I believe the PDF Scott posted recently by Nick Silver actually mentions Derealisation within it. It’s worth a look.
Thanks Dean
Will take a look later - in a rush at the moment but also feeling really freaked out - woke this morning about 5am with my sister singing ‘Happy Birthday’ loud & clear in my left ear! She lives miles away from me and it’s not even my birthday. Don’t know what is going in with my brain! Or what this could possibly be called? Feel like I’m going bonkers!!
Any else had voices in their head?
Barb