posted 04 October 2005 04:05 PM           

Like I said...only you can decide if the benefits of the drug are worth it for you. The side effects are temporary, but I still have problems with my memory sometimes. My neurologist has said that this is just a temporary thing that will go away when I am off of topamax.

Have open communication with your Dr. The drowsiness only lasted a month for me and the dizziness went away in a week and I was on 100mg. I am now on 200mg and doing just fine.

Keep us posted and I hope that things work out very well for you

posted 06 October 2005 05:55 PM           

I hope to go off of it about 4 to 5 months and be headache and pressure free. I did not mean that all of the side effects will last that long because, as I told KMARTIN, some of the side effects are very temporary.

Sorry to confuse you...feel free to ask anymore questions!

posted 06 October 2005 09:18 PM            

I just wanted to check in and let everyone know how things are going. It is my 6th week on Topa and I have been at 100 mg for 2 weeks.

I have only had three migraines in the past 2 weeks and that is a great improvement for me. The biggest thing that I have noticed is that the constant pressure on the right side of my head has weakened. My right eye is still dialated but doesn't seem to be so huge~only when I have the migraine.

I have taken many many different prevenative migraine medications....mostly the antidepressants. The antidepressants really made me feal horrible and some of them absolutely made me feel like I had no emotions at all. I couldn't be happy or sad...it was horrible! While the first few weeks of the topa made me feel weird, I still felt like "me", emotions and all.

I started to feel much better when I started taking 100mg and when I started taking it at a different time. I am really feeling positive about topa and the side effects so far have been very minimal compared to the side effects caused by having migraines day in and out.

~since most of my posts are negative (lol) I just wanted to say one positive thing while I am still feeling good~

posted 11 October 2005 01:52 PM            

Just popping in to see how everyone is doing.

Skye- I 2nd JC, - that is awesome news on the dilation and that you are feeling so much better! Yay.

Wishing everyone well,
RJ

posted 14 October 2005 09:10 PM            

I started taking Topamax mid Sept and by the end of week two the s/e's started to taper off.

I have found that if I keep drinking a lot of water throughout the day I don't notice the s/e's as much.

My firt two weeks were H*LL because I wasn't drinking as much water. I felt like I had the flu, tingling hands and feet, headach, just plain awful. But toward the end of those first two weeks I noticed I was feeling more energetic and instead of feeling that way all day it was only part of the day.

My doctor recently increased me to 50mg twice a day and yes my symptoms have increased a little but as long as I have increased my water they aren't near what they were like those first couple of weeks. So I'll take it.

posted 15 October 2005 08:57 PM           

I have been on only 30mgs for over a year, doing excellent on that dosage.(And I was a migrainuer with daily migraines nonstop.)

posted 15 October 2005 11:58 PM            

My Doc has me keeping a migraine diary and I have to call him every three weeks between my 6 week visits to give him an update on how many migraines I have had so he can adjust the topa as needed (for me) in 3 week increments. I haven't posted this week and have actually had several more migraines and my doctor still feels that I should be having less. Though, I am THRILLED to be having as few as I am! That is why I am still being monitored so close and I also have a cyst in my head too. I really do not want to go up on my dose on topa. However, My neuro stressed to me *the key to topa* is to find the proper dose. LOL! He knows I don't want to take more

Dear AJ, I am very glad for you that topa is helping your migraine. I am sorry that the s/e are so bad for you.

I had a migraine yesterday and then today too. I was really feeling very sorry for myself when I was taking my medicine. Then I thought of Shakil. He posts under "for nobel purpose". He lives in Pakistan and just went through the earthquake. I was thinking of him because he can't even get medicine for his migraine.

We are so fortunate to have doctors and medicine even if they do not always work perfect.

*just always trying to think of something positive to say*
Skye

posted 19 October 2005 03:00 PM         

Of course...I stopped having headaches at the exact same time I had a big car accident and got hit in the head with an airbag. Coincidence? Maybe we all just need a good pop once in awhile with an airbag to shake things up!

Hope all is well is the rest of you.

posted 20 October 2005 12:49 AM         

I never felt nuts like I hear people here describing as they bump up quickly. Unfortunately, though, the lower doses didn't work, so it took longer to find relief.

If you are feeling too nuts, you are in charge of your own care. You can ask your doctor to move up slower. Going slower would allow more time at each dose and give your body time to adjust before you have to keep bumping up again. This schedule you are on is just a recommedation by the Topomax maker. Your doctor should not care how fast you go if this pace isn't working for you. Just take an extra week or two at each dose if your doctor OK's it. It is the constant "bumping up" that makes you feel crazy. (Or you can decided to just get through it more quickly and get it over with.) Once you are level, I really think you will feel OK. It is not a specific magic dose, it is the leveling off that will bring relief from side effects.

posted 21 October 2005 01:43 PM            

I NEED HUGS!!!!!!!!!!!!!

My worker's comp company sent me to a quack pot doctor who said I didn't get my migraines from the SEWER GASSES that I was exposed to for over a year that even the scientific report on the AIR quality said I got them from .....and now they
COMPLETLEY
CUT
ME
OFF
from my MEDICINE!!!!!!!

I am in total relapse.
Im sorry if I sound bitter......i've been dealing with this for over a month and I just had to come somwhere where I knew you guys would understand.

I was at the point before all this where I was headache free and ready to go into rehabilitation to find some other line of work (I was a financial represenative) Now Like you all know words get jumbled, it is impossible to calculate anything, and people just don't trust you with thier finances....heck I wouldn't want them to either)

At any rate Not only do I have no money for my medicine, but no money to replace my income. I have top notch lawyers who assure me I have this in the bag and they will pay for what they've done.....but the system moves slow and it will take at least six months. For now I have to wait on the mercy of the state funded programs to get assistance for my medicine......

posted 21 October 2005 02:08 PM           

Hope everyone is doing ok and hope everyone has a wonderful weekend! Lots of Love!

posted 21 October 2005 04:48 PM            

HOW awful! HUGE HUG from me. No, I can't say I have sat in your shoes, but from the days of working in our law office before this position - I have seen your case similarly, in multitude. I know you wrote you have top notch Attorneys. I am VERY GLAD to hear this. I think I posted briefly - we have a corporate family law office.

You are right though Princess, - even though you have recourse, the system is slow. At least you are smart about this and not sticking yourself in a bad situation on anticipating "tomorrow".

So, in terms of solutions, let’s talk. Can you try St. Vincent DePaul through the Catholic Diocese? They should call you back within 24-48 hours. Call a catholic church by you - you will not have to wait on state funding that way. They may be able to cover you on medications. If they can't help you, they will usually put you in touch with someone that can (immediately).

Next, did you know under the HIPPA act that you can go back to your doctor’s office and relinquish their ability to share your records. Sign that you don't want any of your records to be shared without your knowledge or released? (MAKE THEM GIVE YOU A COPY). Also, did your previous employer lead you to believe you HAD to go to that doctor? I don't like to hear that. My place of employment tries to do that to the employees ..... - But it is your right to go to whomever you choose. Yes, with workman’s comp they can make you go to appointments, but YOU can choose your doctor. Everyone - remember this - you have a choice. I would tally that one up for your suit - if you choose to pursue that avenue. If they didn't inform you of your right to seek the MOST QUALIFIED doctor and misled you - I guess they are creating a liability for themselves. I'd also go back to that doctor; first sign the HIPPA thing that doesn't allow them to get anymore information on you or give any away (create a barrier and isolate them). Then you can ask to see your file -another one of your rights (not your copies - but your actual complete file) and then I'd walk right out of that office with it..... (that is just me). Now I am feeling a little mad for you.

Also, now that they’ve cut you off, you don't have to see any doctors that you DON'T want to see - or talk to anyone from that company. Frankly - I'd give them your attorney's number if they call.

Re: study. Don’t second guess yourself because of that report Princess. Of course their people, are going to have their study turn up with results on a scientific report in their favor. That is all setting the stage for something legal. They're grasping at straws and that is about what they have. They can't turn back time and collect the same air. They also can't ask you to re-expose yourself to whatever gas is there now, to see if it re-produces a migraine- without putting themselves at risk again. How absurd (on their part - to pull your meds). I'd laugh if someone turned that piece of evidence in, at a trial - supporting their conclusion to cut the bennefits. Their study is going to be very hard to prove viable in a court state of law. WHO IS their HR manager or their quality risk control manager? They need a new one! - Like last year.... (WOW, I'm getting oppinionated on this one). They should have just left the whole study thing ALONE. However, they'd be fools to turn up with a report now on poor air quality wouldn't they? **Because not only would they have to pay you - but they'd be negligent for not holding whomever was in charge of the sewer accountable immediately like they should have done in the first place. Don't let them become escape artists and masters of deflection. Keep your head up.

I am sorry to hear that you're going through this. You have a right to sound bitter...I think I started feeling bitter for you as I was typing. Ugh...pitbull came out. I am glad you came here! I hope we can help somehow. Try St. Vincents. I will try and think of something else.

Hugs,
RJ

posted 22 October 2005 02:13 PM            

Thank YOU! That was me for sure that posted and I think that Skye, I think too had some similar experiences. That is awesome advice. You rock for remembering us. That is one more reason why I love this board. We really do look out for eachother.

I think I will pop a benadryl (I'll check and make sure it doesn't interact with anything first though) next time and see if it works. Good deal.

Thanks again!

Thanks for remembering!

Take Care,
Rachel (: "RJ Rachel" - there are two of us now - how cool!

posted 22 October 2005 10:47 PM            

Just wanted to let you know that I recieved approval from the state for Medicaid! Wheew.
I live in a small town, so thank the Lord they were understanding enough to accept the approval letter as enough proof and filled my presctiptions!!!!!

I have set my mind to finding out a way to change these laws.
There is NO WAY that I should have to prove to 7 doctors that I have a disability before I can recieve any benifits, and then six months later have ONLY 1 doctor discredit me for them to cut me off!(in one day)

This is a very dangerous situation they put me in....everyone here knows what these drugs can do, you just can't "cut cold turkey"!

o.k. I'm ranting again

Again I want to thank all of you.
You have been so supportive....both now and all through this. It's so nice to come here and be with people who understand.

Shari, RJ, Cranky --- Love ya sistas!
God Bless!

posted 28 October 2005 06:24 PM           

I keep reading over what you posted and I can't help but think that I am missing something. Where is the doctor that had first prescribed the meds to you?

I wish that you were here! I know people that know people in the medical community

Have you started back on your medicine yet? Gosh! My heart goes out to you! I get so mad when I read your post!

I am still thinking about you and praying for your situation! Take care!

posted 29 October 2005 02:15 PM           

I am new here. I am a college student (19), and I was just put on Topamax. The reasoning behind the med is this: a few weeks ago, on my 19th birthday, I had a tonic-clonic seizure while watching a movie with my boyfriend (I know that this is a forum for headaches, but you all know so much about Topamax!). I had an EEG and an MRI done, and the doctors found that I have temporal lobe scars. They think that they came from a year-long bought with Mono that I had.

Anyway...
I just started taking 25mg of Topamax last Wednesday night. I am supposed to up the dosage by 25mg each week until I get to 100mg. I have no idea how this will happen when I already feel so out of it.

My tummy hurts...I am irritable...I can't focus...I'm not motivated...I'm weepy...

And all of this is happening when I'm trying to catch up on schoolwork after all of the doctors appointments.

Will these side effects go away? If so, when do you think? Will I always be groutchy on topamax?

Thank you SO much for any help!!!!!

Thanks,

posted 31 October 2005 01:53 PM            

Cranky, thanks for the advice on the med companies, I will keep that in mind if anything happens with the state programs. I am sad to hear that we have so much in common, but relieved to hear that you can relate

Shari--- Sweetie, I wish I could say that you are missing something, but that is just hte way workman's comp is allowed to operate by law, they can pull the plug at any time if they can show even the slightest reasonablity to do so. In the end the judge will see what they are doing, and how they are just grasping at straws, but for now it's a waiting game. My original, and primary doctor has been fighting for me tooth and nail, but the workman's comp company just has more leverage at the moment....at the moment.

I am doing much better since getting back on my medicine, I've had to titrate back up to my levels again from the low doses I was on....talk about a roller coaster ride...
Bur all is better now.

posted 31 October 2005 02:07 PM            

You've definitely come to the right place!

As you will notice, you will have to forgive letters switched around and misspelled words, that is a common side effect of the drug. It is one of the side effects that seems to stick with you through out the entire time you are taking our "friend" for most of us.

Take some time to read thought the posts. They are a vault of information. Examples of side effects range from the extremes. Anything goes really. From running into walls, to flat out saying the word company when you mean to say country.

You may feel like you're literally stupid at times(in my case I was used to speaking to a room full of board members).

The best thing to remember is that most of the side effects are temporary (most of us find that side effects are at their worst when titrating dosages and usually last for a week or so)

Do yourself a favor and let your loved ones, and people around you know that you are taking this, so they understand what is going on with you. You will be crabby for awhile. If they know this is drug induced, they can help rather than just get angry with you thinking you have "no reason" to be "pissy"

Always Always remember to come back and ask any question you like NOTHING is to strange here and you couldn't find a better group of people for support. We are all here for each other. Even if you need to just vent (see above post)