Starting Topamax - a little anxious

Hi folks~
I am starting Topamax in a day or two (as soon as it clears the insurance approval.) I am very sensitive to side effects, so my Dr is starting me on 15 mg, a pediatric dose.

Honestly, the only preventative I've ever taken has been herbal or natural, so I am a bit nervous about taking a pharmaceutical every day. I do know I need to try something since the migraines and mixed headaches are really interfering with my life, more now than ever. I have headaches on most days - with those killer migraines superimposed on pretty constant head pain.

Any words of wisdom or advice about your experiences with Topamax? I'd love to hear from you. Also, any ideas about drug interactions you may have had. I occasionally use cannabis for the milder migraines and head pain, with some success. Any experience with mixing that with Topamax? (not exactly the question I can ask the pharmacist!)

Thank you!
Jane

Jane,
I cant offer anything helpful as I havent had it. I have had many, but I wasnt suitable for it, I cant recall why...
But I do understand your anxiety. I dread each new drug. I have Fibro and it has made me very sensitive to drugs.
It also effects my memory and I have once or twice taken an extra tablet in error. (I have sorted that one now I think)
Anyway there are many on here who have used Topomax and I am sure within a few hours you will have a plethora of advice and experience,
I hope it goes well for you and helps you.

pen

I was on it for several months and it was by far the worst mig drug I have ever used. It will deplete you of potassium, make you extremely moody/angry and very forgetful. The low potassium will cause numbness and prickly/tingling in your extremities. Your clothes and bath towels will smell like burnt fireworks and at 150 mg I could smell it my sinuses.

Food will taste funky and most carbonated drinks will taste horrid. Your appetite will go away and in my case I started losing a Lbs per day. Then you start burning your own fat and go into ketosis. Your kidneys will hurt like hell unless you drink massive amounts of water. It affects different people different ways and is dose dependent. The psychiatric problems for me were the last straw and my wife called the neuro and told him to find something else. I will never take it again for any reason.

But I know a couple nurses that swear by it and have had very few migs since taking it. It's a gamble and we all get desperate enough to try a lot of drugs. For me Topamax was intolerable.

I am currently on topamax. In a month I titrated up to 100mgs, upping it by 25mgs a week. My annoying side effects were tingling in the hands, feet, and face. Cognitive issues; I'd walk to the kitchen, open the refridgerator and forget why I was there in the first place. I'd use the wrong words a lot and had trouble recalling words from my memory. I was a bit more forgetful. I had leg cramps that were pretty bad, offset now by taking potassium daily. I still get them on occasion. My menstrual cycle is a little screwy, and watch with B/C..ask your OB/GYN, it may make your BC ineffective.

When I started, the dumbness I experienced shortly after upping my dose the first night was similar to feeling like a 16 year old stoned kid. Not so bad because it does go away, but for some people it scares the bejesus out of you.

Carbonated drinks do taste bad, and food does loose some flavor. For me it has been a great bonus. I have lost 30lbs in 3 months and couldn't be happier with that. Yes, you should drink a lot of water..this medication does primarily get filtered through your kidneys causing incidences of kidney stones and water will help ward them off. I have never had kidney pain before though.

As far as psychiatric problems, I have the opposite. I feel more STABLE than ever before in my life. I let the little things go more often and don't stress as much. I feel like I have significantly less stress now, even though my life is riddled with stressful situations. My husband is very happy with all the changes, he can stick as many dirty socks between the couch cushions as he wants and he gets away with it Life is short!

Have people you love keep track of your moods when on this drug. Some people do experience psychiatric problems and wouldn't have ever known anything was wrong or even if it was the topamax if they hadn't been told by their friends and family.

100mgs didn't cut it so I am now taking 150mgs. I have no side effects anymore except mild tingling in hands and heels of feet. They all went away at month 4, except the lack of appetite and mood stabilization which is okay seeing I could stand to loose a few pounds more.

The frequency of my migraines are much better for the first 2 weeks after I up the dose. Then it goes back to about 1-2 migraines less a week. The severity is definitely better, old migraines were always a 7/8 new ones are usually 5/6. The topamax also allows me to battle the bad migraines with medication. Prior to taking this drug I could never control or abort my m's however now I can! It is nice to know what it feels like to have an end in sight to almost every migraine. There are still stubborn ones now and again but all in all I think this drug has helped me dramatically and I will continue to take it.

I would even continue taking it if I got a few kidney stones a year. Mind you, I have already experienced kidney stones so I know what I would be in for. It has to be pretty beneficial for me to willingly subject myself to that

Best of luck!! Feel better!

My experience on Topamax has been very different. I think as with any medication we all experience side effects in different ways and with different intensities. I also started and titrated with the 15 mg doses. In doing so I think I did minimize the side effects and have tolerated the Topamax very well. (I tolerate most meds well though)

As far as mood issues I only experiences some mood swings at the very beginning and at that only when I upped my dose and only for a couple of days. It very quickly settled down. I am tired often though fatigue is a problem. Some days I am VERY tired. But no more honestly than I was battling 15 migraines a month!

I have experienced a 20 lb weight loss since November. THis has slowed down now and have not lost weight for 2 weeks . I have gained some appetite back. Food has lost some taste for me and carbonated anything tastes horrible. I use nutritional supplements to make sure I am staying healthy. I do drink water like crazy. You can get kidney stones from Topamax.

The tingling sensations in extremities have all but disappeared and only effect me when I get really cold or sit in an awkward position for too long. I find exercise can bring on some of that as well. I did get two days of skiing in a couple of weeks ago with no tingling symptoms which I was really worried about. I do get some muscle aches which I am attributing to the Topamax.

Another big one is some memory loss etc. I have had some trouble locating words, names etc, and sometimes my spelling is horrible. Which is awful because I will just sit and try to spell a word and it takes a long time to retrieve the spelling from my memory.

Even though I am tolerating the drug quite well at 100 mgs I don't know if it helping enough right now. I am going to neuro on Friday and I know she will want to go to higher dose. Higher dose would mean more side effects - I don't know if I want to do that, so we'll see. Anyways thats my story, hope some of this helps. Anytime I try something new I just think. I can always taper back off as quickly as possible. I warn those around me to watch for the scarier side effects and give it a try.

I guess it is all a balancing act with each thing we try. How much good is it doing? Can I live with the side effects? Is it improving my quality of life? Good luck.

Jo

Jo,

Try the higher dose first before thinking it will automatically mean more side effects. If it does, it does but for me, when I went up 50mgs again after settling in at 100mgs I noticed NO side effects

Hope this helps!

BTW, keep a headache journal. You don't have to go crazy with it..just a small little notebook, computer, or calendar. On the days that you have a migraine write a number 0-10, 0 being the best and 10 being the worst pain that way you can tell if the drug is working. It can work in many ways. It can reduce frequency, reduce severity, or make your medications more effective. I'm sure it does a few other things too, that is just what I have found by keeping a journal myself. It takes me two seconds out of my day to do and is well worth it. My docs like it, too. It gives them a better idea of how the drug is working for me.

PS. If you go on to other preventatives and they are similar..in the end you might want to pick the best one. After all these crazy drugs how will you remember the ones you liked best? The journal will help you with that a lot as well. Revert back to it and say, Prev. A gave me an average of 3 m's a week at a severity level of 6 whereas Prev. B gave me an average of 4 m's at a severity level of 5...so on and so forth. Then you weigh your options, ya know?
Best luck to you both.

Hi Jangel,

I'm one that had a nightmarish reaction to Topamax. BUT, I don't want to put you off of it. Three of my friends have had great success with it. We are all so individual in how we react to different drugs.

After being on it about 6 months I had a complete mental breakdown. I was taking 400 mg a day. Suicidal, manic energy (up cleaning for 36 hours straight! And I don't clean), confusion. I went to a psychitrist who mis-diagnosed me as bi-polar (at the age of 47 and never having had any symptoms before).

The tragedy of the situation is that no one took me off the Topamax for another 1 1/2 years. It was only AFTER I had all drugs out of my system that my neuro told me that I was the second patient of his to be diagnosed with bi-polar after starting Topamax.

You are very smart to gather all the info you can. And, Lovegia gave very good advice. I was so out of it I was not cognizant of what was happening to me. It was only through the intervention of my co-workers that I got the help I needed and got off all the psychiatric drugs. So let your family and friends know that you are interested in any feedback in your personality.

On the plus side, I lost 40 pounds! For that reason alone I wish could take Topamax!

Best wishes and I hope it works for you!

Charlotte

Jane,

I have tried just about every preventative med out there so I certainly know how you feel.

Have had countless se's on different meds. Many though just didn't help me at all.

Took Topomax about 4 years ago.

Could not get past 100mg due to tingling, numbness and total zombie head!

Believe me that my brain function (or lack thereof) is bad enough on it's own.

I had forgotten how bad the carbonated drinks tasted!

Just couldn't get to a high enough level to help. I remember my MD saying it would probably take at least 150mg.

These drugs work so different for each of us.
I sure hope the Topomax works well for you.

Good Luck!!!

Cindy

I'm on topomax, 100mg a day as well, and it is the best preventative for me. I used to be on 300mgs but tolerate 100mgs just as well, and 300mgs were not any more effective than the 100.

Side effects are minimal for me. I get the tingling in my face, hands and feet, it was pretty bad when I first when back on the topomax, about 6 months ago, and lasted about 4 months. It's tapered off now so it's really only felt when it's cold. SOmeone else mentioned experiencing something similar.
I also have the problem where I can't remember the words I want, and feel just plain dumb sometimes. Last night I was at a friend's house and was trying to remember Sobe ice tea, and for the life of me could not recollect the brand. I felt such an idiot. Then we were talking about where in Canada we'd like to go on vacation (we were watching the Olympics) and again, I could not remember the names of the two places in Canada I wanted to go. The first place eventually came back to me - Edmonton, I'd love to visit the giant mall there But the second, I just blanked on, even though I'd spoken of it often with an ex-boyfriend of mine who is Canadian.
I finally remembered today, it was Banff. LOL Again, I felt so dumb. I blame the topomax. I never used to be such a dum-dum.

Other than those two side effects, I think I've been pretty lucky. I do drink alot of water, anyway, and I never drink carbonated drinks because I don't like carbonation. I've lost 15 pounds since November on topomax, so it does make you lose weight. Also, it does come with some hair loss. I have noticed I pull out more hair when I shampoo, which is a bummer as I'm awfully vain about my hair, but it's not excessive (the hair loss) yet, so I'm ok with it so far.

I don't experience the severity of effects Brent described, thank goodness. How awful - I'm sorry you had to deal with that, Brent. Others on the board have shared some pretty negative experiences. I don't know why some of us can tolerate this drug and some can't, and why the negative experiences are so awful, and then for others of us, this is like a miracle drug. I used to have 3 or 4 severe migraines a week, and then I used to have 3 to 4 day severe migraines, too, and topomax has helped me eliminate those. I used to have to call in sick or go home ill from work at least once a week, and worry I'd get fired from work because of my poor health.

Hope this helps, and good luck with the topomax. I really hope it works for you!!

I am glad to see LoveGia chimed in already, as I want you to get a fair mix of opinions. And I know Topomax has a lot of enemies... Me being one!!

I lost my personality, memory, intelligence, taste, and ALMOST my marriage while on it.
Not a great time. I tried it twice... Both times... Yuck!

BUT... It musn't be one of the only "approved" migraine preventatives ( rather than off-lable ) by chance!

Please please go slow... And don't be afraid to say quit if you don't feel well. Remember... There is no cure, so you are aiming for results that are worth the cost of the side effecs. Only you can be the judge of that.

Good luck!

Wow, I'm so sorry that happened to you. It's so weird how topomax is such a good preventative for some of us, and so bad for others.
Nuerontin was the very devil for me, and I know others on here have found great success with it. Isn't that funny?
Sorry, I know I'm off topic tonight. My brain is actually foggy tonight, it could be the topomax!

Wow, thank you all for taking the time to give me your personal experiences with Topamax. It sure seems like a crap shoot - a reall 50/50 chance that it will work well or be awful.

I really appreciate all the tips about drinking water, etc. I do like that potential SE of weight loss though and that is why my Dr is trying me on it. I am on weight watchers and couldn't bear taking a preventative that would make me gain weight - I've worked so hard to take off 20 lbs!

Anyway, I will keep you all posted on what happens with the Topamax!
Thanks again,
Jane

Jangel,

I've tried it. Started at 25mg (really sensitive to meds) and did okay - but no help. Went to 50mg and holy cow - major mood swings (like every 5 seconds) and it was the whole gammute for me (happy, sad, angry, depressed, euphoric, homicidal). Never knew which "personality" was going to surface at any given moment. This was it for me - no other side effects but I couldn't handle being looney tunes. I was supposed to get to 100mg but after 3 days at 50 - it was a loser. If you are trying it (and you may be just fine - stuff that has the potential to alter mood in me does) my neuro told me to drink plenty of water (if you get the tingly feeling, drink something - it's a sign you aren't drinking enough) and to eat a banana every day.

Hope it works for you.

Becky

15 mgs is a good dose to start at. I started at 25 and then had to cut it to 15. I am back at 25 (I should be upping it pretty soon), and doing well. (Well, better than before)

The side effects are a bit wacky. To me they were much different than my migraine symptoms and other med side effects. I have been on it for a month, and I can tell it will be even more beneficial as time goes on. Be careful/aware of what happens to you during 'symptom times' so you can tell your doctor (so if you need to change the dosage), and I hope it works for you.

Lillian

Topamax depletes your body of potassium which is what the numbness and tingling comes from. I found low sodium V-8 juice to be a very cheap and effective source of potassium. Every oz has just over 100mg of potassium chloride. The RDA for adults is 3500mg and if you are losing it from a med then you really have to get a good source and stay on it. Potassium pill supplements are FDA limited to 99mg so that would be a challenging way to go.

And aside from the potassium you also get lots of lycopene, beta caroten, iron, plant based vitamins, minerals and soluble fiber.

Thanks for that tip, Brent..very good to know since I'm on a low budget and topamax also decreases the amount you eat so nutrition is a important thing for me.

I still drink a half bottle (23 oz) a day just to get all the benefits from it. I hope it goes better for you then it did for me. The only way I can describe it is a total complete nightmare.

Nah, I'm lucky. I've been going at this for 5 months and I am very happy so far with my experience. Sorry yours wasn't so great. Everyone's gotta find what works for them, trial and error can be very annoying. The tingles aren't so bad, the leg cramps are killer. Potassium helps but I still get both rarely so I'll try the V-8 thing if it helps just to eliminate the occasional leg cramps.

I took Topomax about a year ago. I only took it for a few days before I broke out in a total body rash, so I'm allergic! For the short time I did take it, I was really annoyed with the numbness/tingling in my hands and feet. The way carbonated drinks tasted was also bothersome. Although it didn't work for me, everyone responds differently. I hope it can provide you relief with mild side effects. I have tried several preventatives and still haven't found one that reduces the severity and frequency of my migraines.