posted 01 November 2005 04:43 PM           

A MONTH AGO I WENT TO A NEUROLOGYST FOR THE FIRST TIME
SEVERAL TESTS LATER

posted 02 November 2005 03:22 PM            

Glad to see you finally found relief!

Welcome.

posted 04 November 2005 01:33 AM           

I am 17 now and was prescribed to topamax about 7 or 8 months ago (up to 75 mg a day), it has helped with all of these problems, but I have found it has caused other problems.

I am quite irritable, I am moody sometimes, short attention span, and I am always sick in one way or another; upset stomach, I get the common cold alot(even during the summer), and just alot of other things that are not fun...

Do you think caffeine may have an effect on the drug? Should I cut alot of caffeine out of my diet while I am taking this drug?

I would like to try a few more things before I suggest to my doctor that I get off of topamax...

posted 04 November 2005 08:14 PM            

As far as the caffeine having an affect on the Topamax, I don't think that there is any interaction problem with those two. However, you are taking a really low dose of Topamax, which could be more of the problem. Most of us on the board taking Topamax are taking 100mg in the morning and 100mg at night. The important thing to remember is to increase your dosage slowly, 25 or 50mg at a time, and spend two or more weeks at that level before moving up again. The slowing you make a change, the less likely you are to suffer from the side effects.

Start cutting back on the caffeine immediately, and talk to you Doctor about increasing your dosage of Topamax.

posted 04 November 2005 11:54 PM         

quote:

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Originally posted by egantwin:
I have been on topomax for about 4 weeks. I have been migraine free so far which is either amazing or just a freaky coincidence. I have good spells from time to time. My biggest complaint now that I am up to 50 mg twice a day is that I feel somewhat irritable. Has anyone else experienced this? Do you think it might go away in time? away.

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posted 05 November 2005 01:54 PM            

Hiya Michele! Sounds like you're going through the same thing I did. My Neuro and I "played" unitl we found the right Combo.

Basically he just kept "upping" the dosage slowly until the Migraines got to an acceptable level. I went throught the same thing. When I titrated the Miraines would stop for a bout 2 weeks and then they would start up again and we would have to increase the dosages, and so on and so forth until I got to 400mgs a day. That has been the level I have been on now for a good steady 6months now. (well with the exeption of my little "incident" but that doesn't count)

What REALLY helped me though was adding the Neurontin to the mix. You may want to ask your Neuro abou it. (If you are concerned about being on really high doses of Topa)
FOR ME......Neurontin evened out the side effects (tingling toes, loss of sleep) and killed off the residual headaches (not the killer part of the Migraine, the dull headache that you get afterward that last for days)

As far as the side effects themselves...after being on Topa for almost a year and a half now I can share that the beginning stages are tough......but hang in there.
They will pass. I promise.
It always seems to be during those stages when you're titrating up.
And it sounds like you're still playing so I would prepare for a long road?
You have a great attitude though....and you're right! Live life every day with a Migraine, or enjoy life and deal with a few side effects. Hmmmmmmm

Hang in there Hun! We're rootin' for you.

posted 05 November 2005 06:01 PM            

Has anyone else done this??

I have just stumbled upon something I'm not sure what to make of.

Ok a Migraine is a migraine.
And a sinus headache/cold is a cold.
We are told not to mix drugs.

BUT. Yesterday I had such a Migraine working but I also had a cold starting.
I did the normal bit to relieve the Migraine (which actually started a few days ago)
So......I did something which I thought was stupid at the time.( normally I would call my doctor, but it was after hours when I did it)
I took some sinus medicine to relive the runny nose/pressure in my sinuses.

Within about an hour my sinuses felt 10x better and my Migraine was gone.

Now, don't get me wrong here. I definately know the differnce between the two head pains. It just so happened that I suffered from both yesterday.

The only side effect I seemed to have from taking the cold medicine was that I didn't sleep worth a hoot.

Anyone else ever do this?

I usually don't mix meds seeing how I am on such high doses of Topa and Neurontin.

posted 07 November 2005 07:41 PM           

Lavi - You have definitely come to the right place I agree with Princess on talking to your loved ones around you and letting them know about this medication and the side effects. You will be moody for a little while. I was moody for about 2&1/2 months before I came to this web site and saw that there were others like me...about ready to tear into anything or anyone that looked at them wrong But, this too shall pass...make sure and check into taking it right before you go to bed...most Dr.s have no problem with this and since the main side effect is drowsiness it works out great - especially at the higher dosages.

I have great news! I was just able to cut down my mg intake! I am so excited! I think that my cranial pressure is finally getting better! It was so weird to experience a different type of headache the past 3 weeks and when I called my neuro he informed me that it sounded like I was taking too much. We reduced it and I am feeling wonderful! So, I went from 100 to 200 and am back down to 100 now

Princess - I am glad that you are feeling better! Keep us posted about everything

Kyle - I am sorry to hear what you are going through! I know that you have probably heard it a million times, but make sure and drink a lot of water while taking this med. I find that when I do I don't feel so bad. How much caffeine do you consume? I don't think that a little bit would hurt, but remember to drink a lot of water afterwards to flush your system

Well, looks like I wrote a book - take care everyone!

Lots of Love,

posted 08 November 2005 04:08 AM            

It may not seem like alot to someone who hasn't been through it but it is a HUGE deal!!!!! WHoo HOOO!!!

IF Alcohol wouldn't give us a headache I would say let's have a drink to celebrate

I'm Sooo Sooo Glad you're feeling better hon!

posted 08 November 2005 04:45 AM            

Have you considered keeping a food diary?

Many of us keep a food diary to figure out what our "triggers" are.
The only reason I ask is that sometimes it may not be the caffeine you are consuming per se, but the amount of sugar that you are consuming with the caffeine. *Myself I had to switch to fruit juice.

Seeing how this was a life altering change for you, the only way you will really know for sure is by logging. Try writing down different patterns of the food you eat, and mixing it up to see what works and what doesn't.

What I'd like to know is if you're drinking soda. And if so. How do you stand the taste?

posted 09 November 2005 05:52 PM           

I called my neuro and he said that I could be experiencing low pressure headaches, since what the Top. was doing for me was relieving the pressure by acting like a diruetic and making my body absorb the excess spinal fluid. So, he dropped me right down to 100 mg.

This is an extremely rare condition that usually occurs in women that are anywhere from a little overweight (I am only 15 lbs overweight) to a lot and are within childbearing years. But, since not even the top physicians know a lot about it yet, this is just what they have seen so far.

Hope this helps---let me know if you have any more questions

posted 09 November 2005 09:21 PM           

quote:

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Originally posted by KERRI-MARYLAND:
TO ALL TOPOMAX USERS - OR SOON TO BE USERS - I HAVE BEEN ON TOPOMAX SINCE SEPTEMBER, 2003. I AM 35 YEARS OLD AND HAVE SUFFERED FROM HEADACHES FOR AS LONG AS I CAN REMEMBER. I WAS AT THE POINT WHERE I THOUGHT I WAS SUPPOSED TO BUY STOCK IN ALL THESE ASPIRIN COMPANIES. WHEN MY NEUROLOGIST TRIED EVERYTHING FROM THE AMYTRIPTYLINE ETC.. ON UP AND THE ONLY THING I WAS FEELING WAS TIRED HE FINALLY STARTED ME ON THE TOPOMAX. HE WARNED ME THAT I HAD TO DRINK A LOT OR I WOULD SUFFER FROM KIDNEY STONES AND THAT I WOULD SUFFER WEIGHT LOSS. AFTER CONSIDERING THESE SIDES EFFECTS AS OPPOSED TO DEALING WITH MIGRAINES AND HEADACHES - THERE WAS NO CHOICE FOR ME. SINCE SEPTEMBER, 2003 I HAVE HAD "1" MIGRAINE, THAT WAS STRESS RELATED THAT I HAD TO TAKE IMITREX FOR, MAYBE A HANDFUL OF ALEVE FOR NUMEROUS ANNOYING LITTLE TENSION HEADACHES (I HAVE A 13 YEAR OLD DAUGHTER) AND THAT IS IT. I TAKE 200MG OF TOPOMAX A DAY - 1 PILL IN AM & 1 PILL IN PM, AND NO I CAN'T STAND TO DRINK SODAS ANYMORE. THAT HAPPENED WITHIN 24HRS OF STARTING THE TOPOMAX. THE MOOD SWINGS WERE HARD TO DEAL WITH AT FIRST, BUT IT HAS BEEN THE BEST THING TO COME DOWN THE ROAD. FOR SOME PEOPLE LIKE ME, AND OTHERS OUT THERE I'M SURE, WE HAVE AN EXTRA BURDEN, I SUFFER FROM HYPOGLYCEMIA. I HAVE NOTICED THAT I TEND NOT TO EAT AS MUCH SINCE I HAVE ADAPTED TO THIS MEDICINE. BUT I STILL GO ON, WITH NO HEADACHES.AND I HAVE NOT HAD AN EMERGENCY ROOM VISIT NOW IN A YEAR, WHEN BEFORE THIS MEDICINE I WAS HAVING THEM ON A REGULAR VISIT BECAUSE THE IMITREX AND OTHER MIGRAINE MEDICINE WAS NOT WORKING OR I WOULD GO TO SLEEP AND WAKE UP WITH MIGRAINE AND BE SO SICK I WAS ALREADY DEHYDRATED. TO ALL MIGRAINE SUFFERERS AND/OR TOPOMAX USERS - TOPOMAX ALL THE WAY - ITS AWESOME!!!!!!!

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posted 13 November 2005 03:56 PM            

Princess - you made me giggle to myself when I read "doo da". I got clobbered yesterday and came close to breaking my code of no ER (pain traveling down my upper spine...crunching - yuck). My head is bruised today - migraine is slight in comparison. Thank god. I am so lucky to have such a wonderful man to take care of me. I am sure we all feel that way when someone steps in to help make things quiet and dark. Of course there is the frustration of consuming someone’s day upon being comatose for hours on end........

It is promising to come here and see the good things that are going on. Shari - that is so AWESOME that you are able to step down on dosage. LP - how are things going for you? Kyle - things will get better- I am certain - because you came here to the board. Princess - I am glad to see you feeling better as well.

Take care everyone,
RJ

posted 13 November 2005 09:04 PM            

Princessdinkydi, I am sending you really big hugs! I had no idea that you were going through such a horrible and awful thing with workmans comp. What an aweful thing to just take away your medicine like that! It is too bad that you can't sue workmans comp for causing you additional pain and suffering for making you go with out your medicine. I think you should sue that quack doctor too. Surely he can not be a neurologist and he should have his license pulled for taking away the only medications that make your life bearable. I am so angry right now that one stupid doctor, well could be so, stupid. I would never wish a migraine on anyone, but wouldn't it be ironic if he found himself on this board one day wishing his migraines away?

Sorry, I haven't been on in a while. I have had a very, very bad two weeks. I ran out of my Amerge and re-ordered it through mail order. BIG MISTAKE! They decided that since It had been 5 weeks instead of 4 since my last refill...they were going to cut back my refill order...they called my doctor and got permission. It normally takes 2 days to get my script through the mail but it took a week! In the mean time, I had a horrible migraine that lasted 7 days straight. It got so bad that I thought that I was going to pass out at work. I almost went to the emergency room but I kept telling myself that the prescription would be in the mail when I got home from work. Finally, the Amerge came....relief!!! I just wanted to cry. I just kept thinking about you Princessdinkdi and also about our friend Shakil who can't even get any medicine.

However, now I am really worried because I have a new type of headache. It is not a migraine (I don't think) It is on the opposite side of where I get my migraine. I have NEVER had a headache on the left side of my head before ever. Now I am really worried. I had this headache 3 days in a row. I will decribe it... Intense pressure behind my left eye, severe, sharp pain. It was so severe that I couldn't lay on that side of my face. My ears were ringing with a really high pitched sound that was constant. I was dizzy but not sick to my stomach. I didn't have aura and my eye wasn't dilated huge. I was light sensitive but I always am! So, it just wasn't like my normal migraine. I could also think clearly even though I was in pain. I thought that it might have been a rebound headache but it should have gone away within a few days of taking the amerge and it didn't. I then took regular excedrin and that didn't help. I then took a claritin because I thought maybe it was sinus pressure and that didn't help. I started searching in my medicine cabinets....I know self medicating is bad but I was really desperate...and I came across a medicine called Fiorinal that my old neurologist had given me. It actually knocked the headache right out of the ballpark. I think he gave it to me for migraine but it never worked. So, have any of you ever experienced a DIFFERENT type of migraine or headache? Should I be worried about this? I am just so use to my "normal" migraine...this is quite scary to me. One more thing to note, it didn't go away for 3 days, until I took the fiorinal. I didn't want to mix to many things together so every night I tried something different.

Thanks everyone for letting complain. I sure do feel better now.

posted 14 November 2005 05:14 PM            

Skye - No self medicating isn't recommended but I'll admit to having done it - and I'm probably the biggest med phoeb ever. What is more important is you found something that worked AND you also are sharp enough to know the difference between your head pains - and their cycles. I'd definately share this with the M.D. ASAP. Start with, "I know that I wasn't supposed to do this - because I know the dangers of it, but this is what I discovered:............ " (in regards to your self medication)

Now Miss - DON'T DO IT ANYMORE! We don't want anything to happen to you. - Ok....at least you were smart about it and waited 24 hours in between. But seriously - forget about waiting on mail order drugs and putting yourself at risk because they don't do their part. Can you ask your MD for sample back ups to prevent this situation from happening? Can you ask your doctor to write you a 7 day prescription, just incase, to cover the base of "next time"?

In terms of the head pain that you are describing it is very similar to the head pain that I get with my attacks. I also get pain in the back of my head (sometime the back top - and many times at the base where my skull and spine meet - with a crunching noise - like when you crack a glow stick.

I am glad that you got this one under control and hope you don't have anymore of this sort in the future.

posted 14 November 2005 10:03 PM            

I went to go see my new asthma doc today and told him about my new headache. He changed my asthma meds 2 weeks ago and I was thinking it might have caused the new headache. He checked me really good and he decided that I DID NOT have a sinus headache and said that it sounded like a migraine. He said that the new asthma medicine was not known to cause headache and that I was to talk to the Neuro ASAP!

Now that you mention it, I did have some sharp pain in my neck too but no crunchy sounds LOL! They were throbbing but sharp almost like a muscle spasm. The thing about this headache that bothered me the most was the high pitched noise (not in my ears) but in my head which almost sounded like a high whine of a computer moniter about to go bad.

I am feeling good today though....3 days and counting...NO headaches...NO migraine....I feel GREAT!!!

*A note to those that have asthma* I was on Advair and my asthma doc put me on Foradil and Asmanex. He said that they seem to work better to treat asthma that is aggravated by certain medicine (like topa).

I hope everyone hasn't been on the board because they are feeling good

posted 15 November 2005 02:40 AM           

Tomorrow I begin taking 75 mg of Topamax daily, 25 in am and 50 in pm. Do any of you have suggestions as to best times to take Topa in order to avoid feeling drowsy all day? I've been struggling at the 50 mg level and dread 75. When I get to 100 should I think about trying 25 in the morning and 75 at night or is that crazy?