Starting Topamax, help please

Well I have managed to persuade my GP to give me some Topamax. She wouldnt give me Klonopin (Clonazepan) as she said it was addictive. She wouldnt give me verapamil she said it wasnt licenced. I am in the UK and this is what its like.

I have just read the list of side effects and for someone like me that has tried at least 10 different preventatives in the past, and got bad side effects from them all, it looks like a lost cause before I start. The dizziness as a side effect is worrying, as is the insomnia as I suffer badly from this already, dont fancy the hair thinning as mine is already thinning at the menopause, the glaucoma is worrying as I have a slight problem with one of my eyes already (optician thought it was close angled glaucoma but hospital said it was at the back or something so it was OK).

Is anyone on this who usually suffers a lot of side effects but finds it OK.
I am going to go really slowly with this one. What amount should I start on and build up?

Thanks
Christine

When I read the list of side effects (which did not include hair loss at the time I was taking it) I was afraid of it. So I did NOT follow the instructions and take the prescribed dosage. I cut a 25 mg pill in half with a pair of scissors, and 12.5 mg per day (approximately) worked for me. The dizzy crap and vertigo stopped. But topamax also made me forget things and talk funny. I was told those side effects would go away. They never did.

Then a new doc figured if some was good, more must better! He convinced me to crank up the doseage to what was recommended at the speed recommended and I did, and all heck broke loose. At that point I decided to call the company topamax hotline (they have one in the states–see their website). I listed my symptoms and was told that these were why most people stopped taking it.

You can’t just stop cold turkey on this drug or you may have a seizure…you have to taper it off over period of time. But if you are scared of side effects, try it, and if you have some you don’t like, back off on your dosage and see if they go away. Every doc I have talked to either pushes the recommended dosage, or makes up their own. They are not the boss of you. But this drug works for some people, and you may be one of the lucky ones, and you always have the option of going off of it.

Be sure to get toothpaste and mouthwash for dry mouth, and chew a lot of soft sugarless gum. It makes your mouth very dry and makes you very thirsty. The dry mouth can promote cavities in your teeth. they don’t tell you that either!

Just remember—for me it worked at half a 25 mg tablet. The recommended dosage is something like over a hundred milligrams. Why take more if less works?

Hi Christine

I tried Topamax but had a bad time of it and decided not to carry on taking it. But that doesn’t mean that you will have any problems, as we are all different and have different reactions to medications. I am very senstive to meds and other substances into my body. A number of other people take Topamax and don’t suffer from any major side effects. I know it is worrying when we start a med, but you never know, when you give it a go you may not suffer any side effects at all!

Becky

PS. I am also from the UK!

Just to give you a perspective from the other side, I am on 56.25mg of Topamax, and I have 80-90% of my life back after 4 months on it. That 20% remaining is my inability to do contact sports due to dizziness from fast head motions (no bid deal), residual light sensitivity, and some slight residual visual sensivitiy. All in all, my experience with topamax has been awesome. It gave me asthama above 56.25mg but at this dosage, it works great. All preventatives can have side-effects, but at the right dosage, who knows what can happen. I say give it a shot. Everyone wanted me off this drug but I felt strongly about giving it a full chance. And because of it, I have most of my life back. Give it a try! Just go slow.

Boslee

Do people find that when they set out to start a new med that they have their symptoms increase? How long do you wait to stop a new med? Right now I am trying a calcium channel blocker and it is making me feel just awful, its only been three days and I want to give it a fair chance.

Thank you,
Sally

My symptoms would increase every time I would increase the topamax. It was like clockwork. Since I was going so slowly, I was never without increased symptoms for the first 4 months on topamax. Now, I have no problems at all, and my condition is much more under control. Hope that helps

Boslee

Sally

My neurologist told me that my symptoms may get worse for the first few weeks when first starting a medication, but that this is actually a positive sign that the drug will work. I don’t know why this is, but thats what he told me.

Becky

Hey Christine, my neurologist just gave me Topamax, too. Haven’t started it yet because I’m cutting back on my Effexor & wanted to get that taken care of first. (Going from 150 mg back down to 75 mg.)

I decided not to read the side effects information until I start taking the Topamax. I don’t want to ‘imagine things’ happening that aren’t really happening. (Guess I don’t trust me!)

We’ll have to keep each other informed…

Ahhhh, Joy - I LOVE the way you think!!! :smiley:

Do you know, it wasn’t until just recently that I read the possible side effects of propanolol (which I’ve been taking for going on 3 years)??? Its a good thing I didn’t either, cause I never would have started it!!! LOL :lol:

Joy,

great idea, when i first joined this forum i made the mistake of reading everybody’s horror stories of all the meds they had taken. When i was prescribed my first AC i broke out into a cold sweat. Well i’m a Topamax veteran :slight_smile:

But keep this in mind. If you do happen to have any trouble with Effexor, which I’m SURE you won’t, have some Prozac on hand. Here’s why. Prozac has an incredibly long half-life. That’s why it’s okayed for use in teenagers - teenagers are so noncompliant that if they miss days at a time it’s not going to through them into any kind of withdrawal syndrome.

anyway, the reason thinking doctors use Prozac to help people get through tough AD withdrawals is because…

it gives them an SSRI to lean on while they’re getting off Effexor and you can stop Prozac cold turkey. At very least, it will help.

Pretty cool huh?

That’s the way I’m doing it if needed! Good luck with your wean and better luck with Topamax. Go low and go slow :slight_smile:

Julie

Thanks all,

Thornapple, are you still on the topamax? R u still stalking funny!! Slightly worrying!

Becky, what are you taking now? Are you under a neurologist in the UK? I was seeing one in Oxford for 10 years.

Boslee, very encouraging! So you are on 56.25 now, what did you start on?

Hi Joy, I havent started it yet so we will probably end up starting together. Am still trying to find out from folk here just what lowest dose to start on.

Somebody mentioned prozac. The SSRIs I tried all gave me instant really bad migraine which was constant and only left when I stopped them. Just my experience.

Also, is it OK to take your usual painkillers of pills combining codiene, paracetamol and caffeine? I take syndol and veganin at the same time?
Anybody know?

Thanks
Christine

Hi Christine,

Topamax was a VERY tough medication for me. I honestly think most people would have given up on it. I know I was VERY close to giving up. It would increase my symptoms every time I had a dose increase and it would last a week every time. Well, I was increasing the dose every week anyway, so I was NEVER without an increase in symptoms. Once I got up to 62.5mg, I REALLY started to have problems. Couldn’t breathe, lethargic, but the MAV was much more under control. So, I started to cut back. When I got down to 56.25, I could breathe, so I stayed there. After 4 months of being on the drug in total, my MAV is 80-90% better. Maybe I’ll settle at 85% lol on average lol. Still a bit of a ways to go, but that’s not bad at all for just one med, at half the recommended dosage, but I AM doing some other things. Still, I won’t mention them as other board members would love to attack me for simply having new concepts and ideas. PM me if you are interested in those ideas. They have worked wonders, especially one particular treatment. I am pretty much back to doing everything I was doing before, except nothing with super fast head movements so I am not doing sports. But other than that, I am not limited. Still have small symptoms of visual problems but it’s manageable and can be forgotten.

The painkillers, in my view, especially with caffeine, are a problem. They are a migraine trigger and will only cause problems.

Oh, and Christine, the list of side-effects that I had from topamax were MANY. Nausea, dizziness, light-headedness, fatigue, orthostatic hypotension, asthma, diarhea every couple of days. Now, I have none of it, and I mean absolutely none of it. The only times I get any of this, is with a dose change, which I have NO plans of making. So side-effects go away once you get used to the drug. If I had given up on topamax, I don’t know where I would be. I hope that helps

Boslee

Christine - I am on 240mg Propanolol per day (huge dose, I know!) , which almost eliminates my nausea but hasn’t got rid of any of my other symptoms (dizziness, fatigue, headaches). So, for the past 5 months I have been trying to find another medication to take on top of the Propanolol that will get rid of the other symptoms, which is proving more difficult than it sounds. I am under a neurologist who specialises in Migraine and new daily persistant headache, he is very good.

Becky

Thornapple, I just read my recent post “are you still stalking funny”, so sorry, I meant “talking funny”, my eyesight is going. Totally not meant, but a funny mistake to make all the same :lol:

Becky, know you probably dont want to name the neurologist but what area in the UK are you seeing him/her? I went to see a very well known one at Queens in London for a while. I have known a couple of people in the past who eliminated their symptoms on 90mg propanalol, if all you have got rid of is nausea on 240 mg I would try something else (just my humble opinion) but 240mg is an awful lot.

Bozlee, I would be very interested in the other things you have done to tackle this horrible illness, having tried so much over the last 25 years, anything anybody finds that works is great news.

Sure Christine, I’d be happy to share what has worked for me.

First, I can’t imagine this past 25 years dealing with this insane condition. I can only hope that it has at least been somewhat manageable for you so that you have been able to live somewhat of a normal existance. I have been dealing with MAV for only 9 months, but the condition has been so intractable for me, that functionability was impossible. I was homebound. My crash was in the winter, after a bout of stress over the fall. Within a week of my crash, I had a complete medical and nutritional work-up with a very reknown nutritionally-oriented medical establishment in NYC. Most of my results came back normal, but there were two abnormalites that stood out in particular. First, my vitamin D level was almost 0. And my cholesterol was very low. I honestly didn’t know there could have been a correlation between my vitamin D level/cholesterol and MAV, but I believe, at least for me, that this was a factor in my developing the condition. It took me almost the full 9 months to get my level up, but my vitamin D is now at about 35, and my cholesterol is approaching the 200 mark, and having the topamax as a preventative has also been a help as well. With my vitamin D in the high normal, I also feel happier as well. The correct test for vitamin D is 25-OHD as there are two vitamin D tests. It may be worth getting tested to see if this is a factor for you. Cholesterol is used to form hormones, and low cholesterol levels can sometimes mean low hormone levels, which according to some, can lead to, or at least exasberate migraine. the migraine program, which scott is embarking on, routinely checks cholesterol as the doctor understands the importance of cholesterol in hormone production. Just getting my vitamin D and cholesterol levels up made a huge difference in my opinion. My intracellular magnesium, calcium and other vitamins were all normal. Vitamin D levels and cholesterol, will also affect serotonin levels, which as we know are important in migraine. So I get my serotonin indirectly from vitamin D, cholesterol, and I eat a cup of home-made ice-cream before bed every night for the tryptophan (precurser to serotonin).

I also stick to a diet of animal protein, non-starchy vegetables (but I eat sweet potatoes and non-grain starch), butter, olive oil, eggs, and home-made sauces to exclude all migraine triggers. Everything that crosses my mouth is 100% free of migraine-triggers except for supplements and medications but these do not upset my condition. When I go out to a restaurant, I order a burger, non-starchy vegatbles with butter and I never have a problem.

My vitamin program is tailored specific based on my blood results. So I would recommend finding a nutritionally oriented doctor who does this. But I do take extra CoQ10 (100mg 3x per day), Vitamin B2, and ginger specifically for migraine. I find it works decently well.

I also go to sleep the exact same time every night, and wake up the exact sam time every day. 11pm every night, 9am every morning. I never change it. It’s like clock-work. I also sleep in complete and total darkness as this maximizes melatonin production, another hormone. I don’t know if this has any play in MAV, but it seems prudent to keep this at a nice level as well, and when melatonin is low, sleep can be quite poor.

I think the combination of everything above is what led to my improvement. I decided to be treated more holistically, including medications as well. I do not believe my results are just from topamax as I am not even on a full therapeutic dosage. 56.25 is all I am on. 100mg is the lowest recommended dosage although people do get benefits at lower dosages obviously.

i work out every day, 1 hour, not intensly, but enough that I keep up my strength, get some cardio in, and challenge my brain to adapt to the stress. I started this in June, and it’s been a real help. At first it was tough, But I have become accustomed to it, and my migraine symptoms take longer to come on now as a result, even from normal every day activities. I also started forcing myself to get out into busy places where my visual migraine acts up, and forced myself to deal with the new visual cues. It has worked. My brain has adapted nicely, and I only have a 10-20% visual deficit after 9 months of this.

None of these things have been a magic bullet, but accumalitively, I believe they have done wonders. Also, for me, vitamin D from the sun has been more effective than from supplements. So, I have purchased a vitamin D sun bed that I now use during the fall/winter months to keep my vitamin D up. All the light bulbs in my house are full spectrum bulbs to avoid “SAD” over the winter, and it works wonderfully. My house is the only one on the block that looks like the sun is radiating from the inside lol. I have to wear sunglasses inside but I would much rather do that, than to deal with those ugly yellow lights that just make me depressed. The house is brighter, and it keeps my spirits up. If it gets too much, I take out some of the bulbs so there is less light, but it is always natural light. Never yellow, and never flourescent.

I hope this information was helpful for you. After 25 years, perhaps you have been through all of this, and found it was normal, and perhaps these other recommendations have been tried. Or perhaps these are something yet to explore. This is what has worked for me, so I am not surprised that a program like the “migraine program” is being hailed as a possible remedy to this condition. I am very curious to see how Scott gets along with the hormones and other recommendations. Good luck Christine, and if there is anything else that needs further clarrification, just ask. I spent months, alone, suffering with this condition and not knowing what was what. I finally got myself to a good place and would be more than happy to help anyone with any knowledge I may have. I just hope the same goes the other way around as well. I am always learning as well, and can’t possibly have the experience of someone who has dealt with this for 25 years. I take my hat off to you simply for your endurance all these years. But I have been fortunate enough to pick up some good suggestions and treatments from some incredible doctors in the NYC and Baltimore area, so perhaps we can help each other. That’s really the idea here :slight_smile:

Boslee

Thanks Boslee for posting such a detailed account of the things that have helped you. I will take it on board and see if I can get some improvement.

Thanks again

Christine

Boz,

Interesting to note that your cholesterol was low. One of my latest test results shows very low cholesterol – below the lower limit! DHEA was at the lower end of normal but my progesterone was too high – over the upper limit. Still waiting to see what the vitamin D story is.

As soon as I get the rest of the tests back, it’s program time. Not sure how they’ll boost cholesterol levels. How bizarre.

You certainly have a regimented life to keep symptoms at bay. I need to be better at going to bed at the exact same time every night. I screwed up today and had a McDonalds vanilla shake thinking it would be ok being vanilla and all. No chance. Two hours after consuming it, my whole body is aching with pain and a headache is brewing. I probably filled myself with every migraine trigger known to man. Back to baby food.

Scott 8)

My cholsterol was in the 90’s my friend :slight_smile: They increased it simply by eating more fatty meats, butter and olive oil. Interestingly enough, my cholesterol went up to 200, but my triglycerides stayed low, and the ratio of HDL to LDL remained excellent!

As far as the vitamin D goes, I don’t remember Michael at the migraine program telling me that they do vitamin D levels. If they don’t, ask if they will. The test is 25-OHD (25 hydroxyvitamin D) which is the more accurate vitamin D. If you can, get it done with Lab corp. They are the most accurate lab right now. I know that’s tough because you are going through the migraine program but vitamin D levels have been coming back abnormally high with other labs, and this has been a major problem among the labs out there but labcorp is using the correct methods of determing 25-0HD levels and are the most accurate. When mine were close to 0 (6 to be exact), the sun was the best remedy. I was on 5,000iu every day and 50,000iu once per month and my level was still low. Once I started doing sun exposure and vitamin D lamps, the level came up.

The sleep thing and food thing was found out the hard way. When I could constantly push it, and change my sleep and eating patterns, I constantly suffered. Once, I changed my habits every day and by the 3rd day, I was seeing flashing lights constantly, I couldn’t move my head, and my visual sensitivity was off the map. It took 2 weeks to recover. Now that I do this regimen of never changing my patterns, I am routinely at 80-90% every day. The only times I get screwed up, are the ocassional night where I wake up in the middle of the night by accident or to go to the bathroom. The key is to sleep through the whole night uninterupted. The 2 keys for me in that area, are working out every day to gain some tiredness by the end of the day, sleeping in total darkness to maximize melatonin, never drinking water within 2 hours of going to bed, and eating my homemade ice cream before bed, which supplies tryptophan and also induces sleep. I never need to be medicated to sleep as a result, and I get my full 10 hours fully uninterupted, even with kids in the house. Since doing ALL of this, my MAV has been at an all time low. I really hope that this helps out for anyone who wishes to try the regimen. It’s unfortunate that I have to be so strict, but I have a full life at the same time. I just have to cut things a bit short. When my friends want to go into the city at 10:30pm after we just had a full night out in Jersey, I have to tell them that I can’t. I need to go home and go to sleep. I’ll see them the next day. No more late nights. I just don’t do them anymore because they aren’t worth the MAV payment. The energy I have received as a result of this regimen has also been no less short of miraculous. I wake up and it’s WHAM, right out of bed and off to my day. My internal clock is set on maximum overdrive lol. I eat the same “types” of foods every day, I never cheat off the diet, and when I am out, I only eat foods on the migraine diet or I bring my own. It’s not that hard either. Every diner in America has a burger and steamed vegetables so I can avoid MSG and other triggers anywhere I go.

Speaking of headaches…over the summer, when I was still tweaking my program, I was getting headaches every single day. And I would get them at the drop of a hat. I swear on my kids, I have not had a headache in a very long time now, and when I get them, I don’t need to take a single motrin. They go away quickly, and don’t linger. This has really worked wonders. Again, I believe it was the combination of all these modalities that helped me, not just one single therapy.

I miss the late nights and not paying for it the next day lol, but other than that, the only thing I miss is chocolate. I’ll probably never consume it again. Other than that, the sacrifices have been more than worth it. :slight_smile:

Christine, from your reply, it sounds like you may not have implimented some of these ideas in the past, which may be a good thing. It means there may be some other things to try after all these years. If anyone wants to have a look at the nutritionally-oriented doctor I am seeing, his name is Eric Braverman and his site is www.PATHMED.com. he’s big into the brain as you will see by his site, which may be why I have faired so well there. I needed a separate MAV doc however, because although Braverman is excellent in what he does, he doesn’t have the expertise with this condition. Still, his therapies and suggestions have resulted in improvements anyway.

Boslee

But keep this in mind. If you do happen to have any trouble with Effexor, which I’m SURE you won’t, have some Prozac on hand. Here’s why. Prozac has an incredibly long half-life. That’s why it’s okayed for use in teenagers - teenagers are so noncompliant that if they miss days at a time it’s not going to through them into any kind of withdrawal syndrome.

anyway, the reason thinking doctors use Prozac to help people get through tough AD withdrawals is because…

it gives them an SSRI to lean on while they’re getting off Effexor and you can stop Prozac cold turkey. At very least, it will help.

Pretty cool huh?

That’s the way I’m doing it if needed! Good luck with your wean and better luck with Topamax. Go low and go slow :slight_smile:

Julie

Julie,
I only wish it were that easy. Go slow getting off the Prozac if you do it that way. Even with the long half life it can leave you with quite the withdrawl, spoken from experience. It drops so slowly that you can feel it for along time.

By the way, I had to take a break from the calium channel blocker and will start again by breaking the pill in half. By day three, I was dropping through the floor and crying for no reason. Not sure if that is a side effect that one can work through. Feeling this bad is hard enough without drug induced tears.

Sally

— Begin quote from “Sally”

I only wish it were that easy. Go slow getting off the Prozac if you do it that way. Even with the long half life it can leave you with quite the withdrawl, spoken from experience. It drops so slowly that you can feel it for along time.

— End quote

Sally, you are right. I also had nasty withdrawal symptoms coming off Prozac in the past. It definitely should be tapered. Years ago, I had my first real experience with severe vertigo when I tried stopping cold turkey. From what I’ve heard though, coming off of Effexor is typically much worse.