posted 05 September 2005 06:30 PM           

So, I decided to sit down and write myself a post~for the future. That way, when I am compaining of all of the side effects of topa, I can look back and make a logical decision if I should stay on it.

I am going to start by listing all of the side effects that migraines have on my life.

1. Irritable & Moodiness....I didn't realize how bad the pain from migraine affected me until I called my mom and told her to "beware" the topa might make me irritable. My mother responded "more than normal"? At first, I thought she was joking but she didn't laugh and then she said, "we all walk on egg shells around you".

2. Light sensitivity....I spent 10k last year putting up electrical hurricane shutters that roll up and down from a switch inside my house over every single window in my home. I made the shutter guy walk around and fix every single little spot where even a spec of light showed through. He explained to me that those small fragments of light would not compromise the integrity of the hurricane shutters. I had to explain to him that I bought them because I had migraine headaches and regular blinds did not keep out of of the light. Of course, I actually got to use my shutters 3 times for hurricanes last year but I use them everyday for my head.

3. Forgetfulness....yes, this is caused by my migraines. I go to physical therapy for a bad shoulder and while I was booking a new appt, I realized that I had missed an appt! I apologized to my pt and he said to me, "you didn't miss your appt. Don't you remember, you had to sit in another room for a while because you had a migraine"? I hardly even rememer being there~I live so much of my life in a fog of pain.

4. Being cold all the time....this is not part of my migraines but I am always cold all the time. I even have a heater under my desk at work right now. RJ, I like your suggestion of the heating pad...I might bring that to work with me for my feet

5. Hearing....totally related to the migraines. My hearing is so sensitive that I recently purchased a new townhouse just so that no one lives upstairs from me. I currently live in a condo and just yesterday I had to go outside and sit on the patio until my upstairs neighbor was through vacuuming. It was literally making me sick. To all those reading this really long post and wondering why I just don't buy a house~I live where there are a lot of hurricanes and I work full time and I am a single mother of a teenage daughter~ I don't have time to do yard cleanup, repairs, pestcontrol, taking care of pools, sauna's, etc....so, this is the perfect lifestyle for me.

6. PAIN....along with the pain, being nauseated....I have 2 choices, attempt to drive home from work to take my medicine or I can try to stumble through the day at work slurring words and wanting to puke on a clients zig-zag patterned shoes. Either way, my day at work is shot.

So, to all of my new found friends on this site~If I start complaining too much in the future of the side effects of Topa~ Somebody, please remind me to go back and read this post that I am writing to myself.

posted 05 September 2005 11:14 PM         

My conclusion: I need to spend the rest of my life on the couch doing nothing. Then maybe I will never have another headache! I think it's worth a shot!

posted 06 September 2005 02:57 PM            

You guys....OK gals...had me laughing out loud here~! Tested - especially about drilling a hole in your head. I just recently threw out the question of "Shall I use a hack saw to take this sucker off or just dip it in liquid nitrogen?" and got a disgusted look. I find it to be quite amusing some days to joke about removing my cabeza....and my only form of comical relief as I fend off the dirty looks that dart my way following such comments. (Usually to my boyfriend) People that don't migraine don't understand. They think it is morbid - actually - it is the complete opposite. A little black humor on how we could live a a pain free life. You know...the headless horse woman. Besides - I'd never have a bad hair day and I wouldn't have to worry about wrinkles.

Skystruck - that list is hilarious. Hey - we have something in common. I am a single mom too.....my daughter just started Middle school. Ugh....not quite "teenager". Although - she believes she is my equal and about mmmmmm - 25. Hey - maybe THAT is WHY I have migraines all the time!

Cranky1 - good call on the Excedrin. I think you're on to something there. It constricts the blood vessels to kill off the pain,and then I think they just dialate more than where they were in the first place causing a rebound headache. I think you are right.

I just wanted to post that Zomig is the only thing that I have EVER had luck with in terms of a Triptan - and I don't ALWAYS have luck with it. I know everyone's different, but for me, spray (tastes like arse) works much better than the tablet - but if you have to use the tablet - ask your Nuero for the dissolvable (tastes like oarnge push up ), so you don't puke it if you get the spins. Immitrex hasn't done much, Frova - nothin....and I don't even remember what guinnea pig other things have been invited into my veins. In the hospital - I have been given rounds of DHE. That works for the headache in front - but not inback. It makes me sick as a dog for about a hour...and they have to give me adavant and Nauseau meds before they put it in my line.

Phenergan - suppositories.....mmmm the doc gave me those. I had a nice conversation about that with him and it went like this: When I am heaving, - the last thing I am going to do is use those things. He kind of chuckled and told me to have it my way then....and I have... More power to anyone that can do it. I have lots of respect for you.

Skye - You know what else helps sometimes too for me in terms of sound... if I can stand the feel of them... is earplugs - the squishy kind.

Shannon - I wish I would have read your post yesterday. Maybe I could have finagled my boyfriend to do the laundry instead.

Alright - I better take the rest of my lunch hour away from my computer. Everyone - have a good day. I hope it is normal.

RJ

posted 06 September 2005 06:12 PM           

Things are still going great here! Side effects gone and headaches gone!

Tested- I do not think that you are whining at all! It IS aggravating to be hurting and for no one to understand the pain that you have, but I do (and we on this site do)! Or at least I think I can imagine that I do somewhat and I want you to know that my thoughts and prayers are with you while you go through these tough times! You are never alone! Just keep at it I am sure the side effects will get better and if they don't, well then maybe a different med will work better for you. There are others out there. If your doctor will not work with you, heck, find another doctor until you get well! There is NO REASON for you to be in constant pain

Hope everyone else is well!

skyestruck- I really think that side effect (the mood swings) will level out. It did with me anyway and believe me, I had them BAD! My boyfriend swears that my eyes glowed red at times

Bye all!

posted 07 September 2005 12:49 AM         

My husband has asked that the first thing out of my mouth while still in bed in the morning not be "Will someone please remove the ice pick from my temple?" He says that's not a nice way to wake up. I say waking up with a migraine is not a nice way to wake up, either!

So I laugh to see others be a bit tacky in reference to the pain. I have talked about drilling a holes in my temple to relieve the pressure--also drawing glares from the husband--and even just giving him a hammer to knock me out. That one just makes him mad. So know I just sign on to you guys and get my laughs.

posted 08 September 2005 07:36 PM            

This board is a good place to be if you are titrating. Your question is a good one, in terms of the choice between Topa or Immitrex. Something reassuring though, that I can tell you at this point, is where I am at now, I don't call Topamax dangerous - not as dangerous as my Migraines were.

I hope that everything works out for you.

Now - a question for my friends. My eye twitching is becoming constant with my headaches. Does this seem normal to you? Someone please tell me that they have gone through this for a long period of time before and it has dissipated. The Neuro keeps telling me it is my "nerves". I am bothered by it (AFTER IT HAPPENS...NOT CAUSING IT TO HAPPEN) at this point. Also - my pupils are still constricting at different levels. Left smaller than my right and my pain is ALWAYS greater on my left. Neuro assures me this is normal with the Migraines and yes, some research is indicative of this - but I am just not very comfortable with it. I want to make sure that other people are and have experienced this. This is a "new" experience that I would rather not be having.

Sure hope I win the lotto soon. Pay my way though med school ...find us a cure!!! Build us that migraine mansion and set up the charter plain.... Still trying for us.....Still trying....

Everyone Take Care!

RJ

posted 08 September 2005 09:23 PM         

RJ, the eye twitching sounds awful. Never had it. Wish I could offer you a "Oh, yeah--have it all the time, no problem!" But I can't. I guess this is where we trust the docs. I hope someone on the board can co-miserate with you on this one. Does it happen every time you have a headache? Hang in there.

I go back to the neuro in one week and I think I need to bump to 250. No help at 200. Still having a daily. Ever hopeful...
Shannon

posted 08 September 2005 09:29 PM         

(My computer froze and submitted twice--sorry)

posted 09 September 2005 09:33 AM           

I am on my second week up to .50 of Topa. Still having migraine but I can hardly tell I am on the topa. My tongue doesn't seem to have that weird feel to it anymore as it did when I was on the .25

RJ, As I have mentioned in earlier posts, I also have problems with my right eye. Many years ago my right eye began getting contractions then the right side of my face now I also get them in my right hand and arm. In fact, it is so bad that I can hardly write with a pen anymore. Then a few years ago my right eye started dialating whenever I had a migraine. Now my right eye is permanentally dialated. This is also the same side that I get all of my migraines. I have seen many specialists over the years. I have been tested for MS and for seizures which are negative. I am also seeing a neurosurgeon because I have a cyst in my pineal gland that has grown from a .4mm to a .7 mm over the past year. My doctors thought that maybe the cyst had somehow attached itself to my retna but further mri's have shown that it has not! So, I am going in for more tests. I have done some research on-line on the pineal gland and it seems to be the most mysterious gland in our body. The one thing that I have found in common on-line is that everyone~ and I mean everyone~ that has a pineal cyst complains of have severe migraine. However, every single neurologist out there deny that a pineal cyst can cause migraine! Another thing that I found is that about another half of the people that have pineal cyst and migraine also have a DIALATED PUPIL! Imagine that! I think that doctors need to spend more time researching these correlations.

As far as the diagnosis for my dialated pupil...I have 20/20 vision with photophobia. My neurologist, neurosurgeon,and opthomologist all agree that my eye is perfect and the dialation is a side effect caused by the migraines. However, what worries me is that they all are monitoring it closely (does that make sense?)

I am getting seperate testing done for the nerves that is causing the muscle spasms in my arms and hands which is causing me to not be able to write. I am also losing my muscles mass and I can hardly open a bottle of water or anything anymore too but thats not related to my eye~ hehe maybe they should check my head!

Skye

posted 09 September 2005 12:17 PM            

Stopped for one minute to grab a breath and chat!

I see everyone has been busy and I've got some good news!!!

I'm down on meds again!!!

My Neuro is so impressed with how my vitimin therapy is going that she had me go DOWN another 300 mgs on my Neurontin!!!!

I have been migraine free for a month now. (DESPITE my family's best efforts to exaust me). Chasing after 3 kids for school, and now my poor son fell off his stinking skate board and may have to have screws put in his hip. (get this the kid is still trying to convince me he can ride his motor-cross bike because he's sitting--does anyone feel me here)?

I'm telling you I owe it all to my vitimins.
She instructed me that in no way did she want me going off of them, even though they weren't perscribed......imagine that.

She did however tell me that I was using my Imitrex wrong.
Instead of waiting for my Migraine to get bad, I was to use it at the first sign of a headache with aura. So for all Migrainers..... there's a piece of advice to take or leave, but I would definately ask your Neuro when you get a chance.

RJ: I get a twitch too---right under my left eye. Usually within a 1/2 hour before I need to take my meds. (again another plug about my vitamins) I have to say I haven't noticed it as much since I've started taking my new line of vitimins though.(My Doc thinks it has something to do with the mass amounts of Magnesium) Remember though....On top of taking Topamax I take Neurontin too.....which is also an anti siezure medication. So I guess I'm doubly insured not to ever have a complete jiggle fest???

Now that I'm having better days you'd think it would be easier to get on the boards.....but there is NO MERCY.
MOM is back and everyone is attacking!!!
Send in the troops!

posted 09 September 2005 12:41 PM           

Princessdinkydi so glad you're down on your meds. Would love to hear again just what amount of vitamins you are taking. I've been doing the magnesium at night but I thought you mentioned something else before.

Skestruck - gosh feel so bad for you about the eye situation. I have a friend who's an eye doctor. Next time I see him I'll TRY (lol) to remember to ask him about the dilation thing.

posted 09 September 2005 02:13 PM            

"I know the drug can be scarey.
There is hope.....I've been hanging out on the drug for over a year now....and too had very long hair.

I take TONS of vitimins and they seem to help.

Check out a company called Advocare.
I am not a rep or anything, I just use the product and they help me every day. I use a complete line of vitimins and a energy drink as well as a sleep aid they have. Th stuff I use is actually also used for weight loss but targets all the stuff we need for head aches.
Over time (and with doc's approval) I have actualy been able to cut back on some of my meds.
They will give your money back if you're not happy and they usually have a rep in your area so you don't have to order anything online. What I liked is that they knew alot about thier product, not like at some other stores.

I came back (thus the edit) with the web-address if anyone needs it. www.advocare.com/02047786 "

Click on the big square in the middle of the page that says "contact your sponcer...." If you wish you can call Mike and Donna....tell them "Keri" sent you. You have my permission to find out exactly what I take

Good Luck!!!!

posted 09 September 2005 03:24 PM            

I just wanted to address the eye-twitching. When I first started on Topa (about 8 mos. ago) that was one of the few SE's I didn't experience. However, just before my last LONG migraine (just shy of two weeks - UGH!) my left eye started twitching. It kept twitching for about a month...maybe longer.

Now for the good news....the twitching has almost gone completely away - thank goodness because THAT can drive you crazy!! It still happens every so often, but I can handle that. It was twitching almost constantly.

I am on 200 mgs of Topa a day and it has really helped my migraines. However, when I get a doozy - watch out! Nothing helps! I am still trying to get my current MD to refer to a neurologist, but haven't been successful. I think that she thinks because she is a migraine sufferer that she is the best person to help me. She is okay, but I went to my old MD (the one who treated me for many years before my company switched insurance - I just paid out-of-pocket for the visit)during my last LONG migraine, she said that since I am taking Topa, there is NO WAY I should still be getting a two-week migraine and should tell my current MD to refer me to a neuro.

I have noticed that the smaller in-between headaches aren't around as much and if I do get them, they go away fairly quick with Relpax. I used to take Zomig, but it quit working. When I went to my former MD, she also gave me a few samples of the nasal spray Imitrex - and it works!!!!

Okay, enough from me! I used to visit here all of the time, but I have been so busy at work - YUCK!!

RJ - good luck with the eye twitch...hope it goes away SOON!

I hope everyone has a headache-free weekend!

posted 09 September 2005 07:05 PM            

Amazingutoo- Do you by chance know the medical name of your diagnosis? I have read a little about Atenalol from some posts on this board but other than that I know very little about it. I will definitally look into it. Thank you very much for the info!

JC- I would love to hear what your eye doc friend has to say about my eye!

Princessdinkydi- I wasn't sure if you were talking about the coast of Florida? I live in Brevard County and Ophelia has been sitting about 50-60 miles off of our coast the past few days. I wish I could blame my migraine on tuesday on her but since it seems that I always have one....I guess I can't! However, I could tell a difference in the pressure around here~it was almost like having a weird headache~pressure behind the eyes. Everyone was complaining about it, even my clients at work! (It looks like she is going to hit SC sometime next week)

It was great to read all of the posts today on the board. To you guys that have been headache free~CHEERS~I can't wait!

Skye

posted 10 September 2005 02:15 PM           

As for the depression with Topo!! Whew, glad it is starting to supside as I have much to be thankful for and don't want to focus on anything negative. I am 48 and a single mom of three, they need a mom that is happy and real, not down and lifeless. Of course I also now have lost much hair...boo hoo, My adorable 16 yr old daughter said either we will shave my head and get a cool tattoo (oh my) or for my next birthday a weave...I think I'll opt for a weave..haha

posted 12 September 2005 02:52 PM         

What other kind of side effects have you had from the topomax? (I am on 50mg per day now for migraines - was taking about 5 imitrex a week) Was the hair loss one of you mentioned from the topomax? And did someone get depressed from the topomax? I was put on zoloft (for the migraines)to try stabilizing my seratonin (dr. thought there was a fluctuating hormone/seratonin connection at one point)but it made me groggy in the afternoons, mopey, and made my headaches worse, so I stopped taking it. Then my neuro put me on wellbutrin xl(regulates dopamine as well as seratonin). I LOVE the wellbutrin - it gives me energy and better moods and it's a wonderful change/relief from the grogginess and frustrations from the headaches and headache meds. But unfortunately it doesn't decrease the headaches themselves. I hope that the topomax doesn't undo the energy level and good moods that the wellbutrin brings on.

posted 13 September 2005 04:59 PM           

Still doing great on my upped dose of 200mg! Headache and pressure free! It is so nice to be without the migraines and constant pressure that I was experiencing from the Pseudotumor Cerebri. Scary stuff! I have also lost 25 lbs. now which is what 5 doctors have told me to do all starting with my eye doctor, then on to eye specialist, then to primary care physician, then to neuro, finally to radiologist who performed the lumbar puncture. Eeek! Hope I never have to go through that again in this lifetime! I thought that I was going to deck my eye doctor when he asked me if I thought about losing a "couple of pounds". I am a little on the curvy side, but my boyfriend sure doesn't mind!

So, anyway, still feeling great and my neuro says that I shouldn't have to be on the meds much longer. Maybe 4 more months. We'll see.

Welcome new members! Hope you can get some of your questions answered and some support here! That is what we are here for!

Take care all! Hope everyone is headache free today!

posted 13 September 2005 06:17 PM            

quote:

---

Originally posted by skyestruck:
Hi everyone-
JC, Shannon, RJ, Sharik, Welcome Sunnidaze, Princessdinkydi, Michele, and tested...gosh I hope I didn't forget anyone.

I am on my second week up to .50 of Topa. Still having migraine but I can hardly tell I am on the topa. My tongue doesn't seem to have that weird feel to it anymore as it did when I was on the .25

RJ, As I have mentioned in earlier posts, I also have problems with my right eye. Many years ago my right eye began getting contractions then the right side of my face now I also get them in my right hand and arm. In fact, it is so bad that I can hardly write with a pen anymore. Then a few years ago my right eye started dialating whenever I had a migraine. Now my right eye is permanentally dialated. This is also the same side that I get all of my migraines. I have seen many specialists over the years. I have been tested for MS and for seizures which are negative. I am also seeing a neurosurgeon because I have a cyst in my pineal gland that has grown from a .4mm to a .7 mm over the past year. My doctors thought that maybe the cyst had somehow attached itself to my retna but further mri's have shown that it has not! So, I am going in for more tests. I have done some research on-line on the pineal gland and it seems to be the most mysterious gland in our body. The one thing that I have found in common on-line is that everyone~ and I mean everyone~ that has a pineal cyst complains of have severe migraine. However, every single neurologist out there deny that a pineal cyst can cause migraine! Another thing that I found is that about another half of the people that have pineal cyst and migraine also have a DIALATED PUPIL! Imagine that! I think that doctors need to spend more time researching these correlations.

As far as the diagnosis for my dialated pupil...I have 20/20 vision with photophobia. My neurologist, neurosurgeon,and opthomologist all agree that my eye is perfect and the dialation is a side effect caused by the migraines. However, what worries me is that they all are monitoring it closely (does that make sense?)

I am getting seperate testing done for the nerves that is causing the muscle spasms in my arms and hands which is causing me to not be able to write. I am also losing my muscles mass and I can hardly open a bottle of water or anything anymore too but thats not related to my eye~ hehe maybe they should check my head!

Skye

[This message has been edited by skyestruck (edited 09 September 2005).]

---

Sky -

When I read this - I was very interested. I have been following my headaches and doing some reasearch now for a while. One of my theories is that a type of these migraines stems from our glands going haywire when hormones are released at the same time - and I am especially interested in the Pineal gland. Here is a quoted post that I think you can find from page 16:

"I am posting before I am reading - just because I have a few minutes on the fly and Sleepy - I feel bad - cuz last week - I posted the glands for you - mis logged in my password and when I backed up - everything I posted was GONE! UGH! Frustrated. So - I thought I would write quickly the glands that I thought might be aching me. They are as follows:
Lacrimal (above my eyes)
Parotid (around my ears)
Sublingual and Submandibular (around and under my jaw line)
and I am wondering of course if the Pineal might have something to do with photosensitivity and as always.... I believe that the pituitary gland plays a role somehow with my migraines. I asked my doctor if he would just check it out. He is good. He said he would. He didn't snub me. Good doctor.

So - they upped my topa. We'll see how it goes....

How is everyone. This time - I am copying this sucker before I hit the "submit" button. Gabbysdad - are you feeling better?

Monitor - thanks soooo much for the info. That was more than my doc had shared in terms of being "thorough".... so thank you. No - I do not usually get an Aura. However - I do get a migraine when I ovulate... so I guess I there is more than just the menstrual cycle to it - huh?. more digging to do....

Wonder how everyone is. Hoping sincerely well and better,
RJ[/B][/QUOTE]"

Maybe you can ask your doctor for his input......

I hope you feel better!

Take Care,
Rachel"

posted 13 September 2005 07:04 PM            

Thanks for your feedback on the eye twitching - and if anything else come up - please share! I am still having it (although it is less, yet more intense ) and it is now moving sometimes down part of my face. I noticed from my posts that this happened to me in March too. I am going to need my neuro to get me some answers.

This week the raise in my dosage of Topaz is finally kicking in and that the twitching, while like I mentioned, is still there with the headaches, is actually less. Hopefully - I am moving over the hump. YAY! (:

How is everyone else doing? I know that Auntchel was down south........ Anyone heard from her? Hope she is alright.

Just Plain Sleepy - It is good to see you on the board! Are you feeling more adjusted these days?

Princess - Thanks for the post on the Vitamins. Sorry to hear about your son and his hip. Is it better?

Shannon - I sure hope and I am going to pray that your daughter does not have the migraine gene!

Sunnidaze - How is the Topa going?

Amazingutoo - what a scary situation and what an amazing recovery! Reading posts like yours always makes me hopeful. Can you share some of the SE's of Atenolol if any?

JC - that blood vessel thing is serious! Have you had a CT? MRI? With gladolium? Recently? 2nd opinion? When it is happening? That is how they found my mal formation of the Venous Sinus. You don't want to mess around with your migraines if you think you do. It is important to know if there is something going on, where it is and what you can do for yourself if something happens. Can I urge you to get that checked again? - This concerns me.

Alright everyone, I have to go. Just know -if I win the Mega game - tonight.... we are going to have fun tomorrow planning where to build the migraine mansion.

Take care - have a pain free day!

RJ