Just started Topamax last night

I know very well you had the VNS.....this is me!
I just was wondering if the mav was present before/after the vns and that that is possibly why you never recovered well. Just a thought. Lisa

 

Gina, I also wanted to tell you that I have had a few ok days lately and that has not happened in....a LONG time! I knew MSG was a trigger - but I did not know all the things it was in that I was eating. McDonalds food, some chips, frozen dinners. I was not realizing that MSG would say monosodium glutamate- duh! I cut out those things in the past few days and I don't know if it's a coincidence but I'm doing better. No meds yet, that starts soon. I'm not perfect but instead of having to walk on eggshells every time I move, I was able to get through 3 stores yesterday and today I cleaned my whole house and did laundry and everything without laying down once. It does happen every now and then for me. I just wanted to give you hope that maybe you will have some good days too.

 

Gina ~ You have been a real trouper and hung in there with everything you faced with the surgery and are facing now. I am very impressed with how you are able to keep pursuing treatments instead of giving up on yourself. It's not easy to keep going back to the doctors trying to figure out things when the docs can't. This I know. Your dedication to helping yourself is an inspiration to others here who see you hanging in, you have been an inspiration to me (((hugs))).

Sparrow

 

Lisa... lol I was wondering if maybe you forgot! lol anyway... nope the MAVe definately started after the vns unfortunately...actually the headaches started months after the surgery where I was told that I could suffer from migraines from having the vns right after surgery it was about 10 months after the vns that my migraines started and I never connected the migraines to any kind of off balance feeling or drunk feeling because I had that since day one after surgery and it never got better so I don't know what to think, now they think that it's a combination of bppv and mav that is causing my daily dizziness and off balance feeling and not the recovery from the surgery anymore. I believe that I am as recovered as I will get... I am almost 16 months post op so I'm sure this is the best it will be but now I have to figure out why I still feel like crap.. I will get to the bottom of this.. in between time I have remained working but I am afraid that will come to an end too, I am still trying and I am going to try for another month or two and see how I do on the topamax and the physical therapy but if I continue to feel like I do I may have to go on short term disability and focus on trying to figure out what is causing this all and get better.

Shelly, I have heard of MSG but know nothing about it either.. I should look it up and learn more about it as I know it is a trigger for migraines... I have also been told that artifical sweetners (like diet sodas) are triggers too? have you heard that? what other foods can be triggers? I know mcdonald's or burger king hamburgers have set me off mostly in an off balance feeling more so than an actual headache... and caffeine, I have just recently started to drink caffeine free coke (cannot tell the difference at all) and alot of water to help with the Topamax.. do you know of any other food triggers (chocolate too ) that I should watch out for? thanks girl. I am SOOOOO glad to hear you are having some good days! WHOOOO HOOOOO good for you sista... it has to be staying away from the MSG.. I gotta learn more about it so I do the same. what about the Lean Cuisine meals? do they contain that? cuz I eat those alot... yikes. thanks.
Gina

 

Sparrow.. thank you.. that was sweet to say and makes me feel good cuz I really feel like I'm losing it! I recently had someone on here tell me that I was wasting other people's time and it hurt so bad to hear that, I apologized to her but she won't accept it and it really bothers me.. I know I shouldn't let that one person do that to me and I have had tons of PM's telling me that this person has been very aggresive with others and that I need to ignore her but I didn't mean to hurt anybody's feelings and would never ever do that. I just want to get better and to be able to be here to help other ppl and sometimes I get defensive and I don't mean it and as soon as I realize it I apologized but oh well... what can you do. I have had so much support from so many others here that I am focusing on that and not the one negative. thank you again Sparrow you are truely a great friend and a wonderful person! I hope you are doing well!!!! ((HUGGSSS))
Gina

 

Hi, I'm new here and was noticing that you are taking Topamax. I've been taking it for years for migraines. May I answer any questions for you?

 

Welcome Dex and thank you for posting!! I would love to have some questions answered!! thank you so much!

How many mgs are you taking? and how long have you been on topamax? did you get bad side effects? or any side effects? if so, when did you start to notice them? obviously they are not bad enough for you to get off the drug, do you have any cognitive issues like brain fog? i suffer with that now and I am afraid the topamax will make it worse..... ???

I just started taking 25mgs of topamax .. this is my 3rd day on it and I know it's a low dose but I'm a big chicken so my neurologist said to just stay at this dose and see if it helps.

Why were you given Topamax? was it for Migraines? or for MAV? I have been given it for both hoping to relieve my symptoms of migraines and the off balance and positional vertigo that I am getting from the headaches.. any questions you can answers would be greatly appreciated!!
Thanks again.
Gina

 

I started out at 50 which is really a small dose. And yes, it was for migraines. I now take 300 mgs. The only thing I noticed was that around 3 am I would wake up with a pain in my stomach like I was hungry. I didn't have any brain fog. I didn't notice any tingling. But I have low potassium so, I'm not a good person to ask about that. I still get tingling in between my potassium doses. So, it may very well be the Topamax. It is a side effect but it's not so bad that it would make me stop. The only other effect is weight loss. On average people loose at least 10 pounds. As a matter of fact, some doctors prescribe it for some patients for just that. They will more than likely up your dose. It will depend on your migraines and how often you are having them. They will also do blood work periodically to check your Topamax levels. If you don't want to take the Topamax because of the side effects, you might ask about taking Lexapro. It's an antidepressant that helps stop migrains. It also doen't cause weight gain. You need to look at the drugs that you can NOT take with Topamax and make sure that you are not taking any of them. DON'T trust your doctor or pharmacist with that. I found out the hard way that they don't always catch those things. Go online and check for yourself. Also, the side effects will last a few weeks and then start to go away. Even if they up your dosage the side effects won't bother you anymore. But your headaches should get better. Mine did. And mine were just horrible. However, I could not take the Topamax and the Lexapro. But apparently, most can. Check with your doctor.

 

Thank you Dexter... I did ask my pharmacist before starting Topamax if it was ok to take with my other meds and he is usually pretty good and said that there should be no problems with drug interaction but just to be safe how can I check that online?

I only started at 25mgs cuz I have sensativity to alot of drugs so my neurologist thought that would be a good dose to start at.. she said if it controls the headaches at 25 mgs we can leave it there and if not we can slowly bump it up.. she said 25mgs is a very low dose and that i should do fine with it. so far so good.. I am just very concerned about the brain fog issues and the memory loss problems as I do suffer from that from having a VNS done over a year ago.. .it has left me with some short term memory problems and now the migraines which brings me to the taking the topamax.. I hope I can do as well as you did on it. Did you have any kind of dizziness with your migraines or vertigo... or any positional vertigo with mirgrains before going on topamax? that is my main problem right now and I am trying to get it under control. thanks again.
Gina

 

Gina, MSG is a food additive. It's a huge trigger for a lot of people, along with sodium, caffeine, artificial sweeteners (you're right about that. I drink one diet drink and I get dizzy, nauseated, and have a huge headache, have for years). Chocolate is included in the no no list. And I am a huge chocolate addict. But let me tell you, I cheat here and there and EVERY single time, my ears fill up with pressure and I get dizzy. I did it today as a matter of fact, same thing.
Lean Cuisine meals DO contain MSG! Some do, I should say but others have other additives and preservatives that set me off. I was eating one every night because it was easier to count the salt on nights that I made things for my husband and the kids that had too much salt. Some of them made me sick right after eating them. Sweet and sour chicken is one off the top of my head that did it.
Google "migraine diet". My doctor gave me a paper with common things to avoid - certain dairy, msg, chocolate, red wine, caffeine and some other things. Food is a definite trigger for me so I'm trying to cook more things myself instead of being lazy when I don't feel good. If I can't cook something healthy, I've been eating cereal.
A couple of others that thornapple told me about was tomatoes and potatoes (Danny can't do potatoes either if I remember right). You could post a question about what food triggers people have with MAV. If you don't, I might lol.
The only thing I don't understand is the doctor said that how much sodium you eat does not affect MAV but when I go off the low sodium diet even by a little, my ears fill up with pressure, the daily dizzies get worse and I get vertigo attacks. I really hope they diagnosed me right - again...
If I can think of other food triggers I will let you know.

 

Thanks Shelly and I will google migraine diet and check it out.. I made beef noodle (veggie) soup today and sure enough the beef stock has MSG in it.. I did have a bowl and it did give me an off balance feeling.. something I need to start looking out for cuz obviously it is making a difference in how I feel.... crap... I love chocolate.. i don't eat it alot but I like to have some now and again. thanks for posting the info and I will let you know how I do. when are you starting on the Neurontin??
Gina

 

When I get up the guts to take it. I'm still talking myself into it. I'm feeling halfway ok and I don't want to feel sick, I don't get a lot of good days!

 

Hi Gina,

Not to scare you but I took Topamax. I really did not like it at all! I call it my demon pills. It just made me feel very ....yuck! And it gave me bad pimples. My doctor stopped me from taking it for about 2 months and I still have about 5 scares on my face.

 

Yikes... that's a new side effect.. how many mgs were you on when you noticed the pimples? i haven't heard of that.. did you have any other side effects? but did it help with the migraines at all? thanks for the info, i need the good bad and the ugly!
Gina

 

GinaMac,

I too am a Pittsburgh Steelers fan. I was born and raised in Greensburg, PA.

Piggy (now a Texan)

 

Ohhhh HUGE Steelers fan here... love em' to death! total football nut. just glad the pats didn't win the superbowl!!!

 

Hey hey now, the Pats SHOULD have won!

 

Hi Dexter ~ Your comment about being careful on combining meds is excellent. Don't leave it totally up to the docs and pharmacists, do your research. I have been trying to add Lexapro to what I am currently taking and tonight I felt like I was having a serious interaction tonight and so I am off the Lexapro for now until I can find a way to go off my other meds. We are having high winds here tonight otherwise I would have gotten medical help and foolishly I stayed home and took some benadryl and that seemed to help the itching, racing heart and swelling. I took Lexapro 3 years prior to all this and it did very little for my moods, but now the purpose is to control the migraines. When two or more meds is combined and if they both share the same receptor sites in the brain, then one will compete for the other med and that's when trouble brews. I seem to be a bit better.

Sparrow

 

Sparrow, I googled drug interactions online and it gave me a drug interaction chart that you can add drugs into see if they will be ok to take together... see if you can find if lexapro is ok to take with your other meds. I hope you are doing better today... I will post more later.. I need to try to make it to work today

Shelly... the Pats did NOT need to win that superbowl my friend!! lol ok ok.... i'm sorry, that was not nice.. I know how disappointing it is to have your team go all the way and then not win it in the end... but there's always next year!

 

Gina ~ I did do my research prior to trying the Lexapro and it showed that Pamelor and Lexapro is known for causing a major interaction due to sharing the same receptor sites in the brain and it's called serotonin syndrome which set up alarms and red flags about comgining these two drugs. My pharmacist warned me when I picked up the Lexapro. But............ my neuropsychiatrist insisted that since I am on such a tiny amount I won't have any issues with this.

Tiny for me is like an adult strength for others, due to my chemicle sensitivities. I will be seeing him on Wednesday and will be talking about going off of Pamelor to try the Lexapro.

Thank you for your information (((Gina hugs)))

By-the-way, have you started your Topomax and how are you coming along?

Sparrow