*Update* WDW'S a no-go /Any daily headache or chronic migraine sufferers out there?

[FINFAN]

DD has been dealing with this for years, but suddently an increase and I am freaking a bit as she is heading back to college to Sarasota from Chicago, in 8 days!( and we have a weekend stop over at WDW to clelbrate DS birthday at the beginning so worried about rides/fatigues etc) I have a call in to our Dr., one time she mentioned Topomax as a beta-blocker, but not so sure what to do, Her campus does not have a health center, so I am wondering if anyone is on it what to expect in the beginning or what other preentative things you do. Unfortunately she is a computer animation major, requiring her to be the labs(a.k.a. the Cave) a LOT, staring at the screen without disapated light..we have not found any O.T.C. stuff to help her yet, only sometimes benedryl/w/liquidibuprofen...but that knocks her out, can't do that at school...she has an intense year coming up. Trying to figure stuff out while waiting to hear frim the DR....
Thanks for any suggestions, you never kow when the smallest thing may help!


Pam
well, heard from the doctor and while we have not gotten the MRI results yet( should be Tuesday afternoon) she feels that roller coaster rides/Theme park chaos in general might not be the best decision at this time. Considering that DD will go from WDW to college and not have any roommates there yet for 10 days( she is a volunteer and it is only 30 or so kids for 12 days) and no one will really be around to help her is her symptoms continue or even get worse ( this is day 6 with no relief) so...looks like we will go that route unless Tuesday gives us the all clear, but then what a nightmare trying to get ready in 48 hours for a trip, college packing /flight limitations on how you pack...and we will be worried the whole time about DD...sigh....Tuesaday can't get here quick enough. We are hoping the results come in Monday, just to ease our worries.

 

[LuvOrlando]

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[onelilspark]

That would be me.

I was getting them every other day. And I think to qualify as a "chronic" migraine sufferer you need to get them once per month. I started Topamax back in February '08. Thank the LORD! Something that works! I still get them (had one this morning actually) but... I dropped down to about once per week, a major improvement IMO, and probably the biggest change for me is that I don't need to take as much medicine as I used to in order to get rid of them! When I get a migraine, I first take excedrin migraine if I catch it right away. If it doesn't go away (or I wake up with it and don't catch it right away) I need to take my prescription. I've been on Zomig for ages. I was diagnosed in the 2nd grade with migraines, started Zomig way back then. I've tried Imitrex, Amerge, etc... and they didn't work. Only Zomig has worked. Back before I started Topamax, I was taking a 5mg dose of Zomig when I needed it. My Dad gets migraines too and he takes Zomig as well, but his dose is only 2.5mg. I was visiting home after starting Topamax, forgot my Zomig (d'oh!) and borrowed my Dad's. Only took the 2.5mg dose and it worked!!! I got my doctor to switch my dosage to 2.5mg on the Zomig. It's great! I don't have to take as much, which means fewer side effects when I do need it.

Also, up until about a month or two ago, I was on straight Topamax and it was costing me $100 every 3 months through my mail order (I actually had to fight them to even let me order it originally!!) They've now put me on the generic. It's working just as well, but only costs me $14.40 every 3 months! I did a little dance when I re-ordered

I know a lot of people have problems with the side effects of Topamax and I did have some, but compared to my migraines, I chose the side effects. I lost weight, my appetite has gone down considerably (which caused me to lose weight.) The 3 months I lost 25 lbs or so, then it began to stabilize. I kept in contact with my doctor because it was rapid weight loss basically from not eating. (I was forcing myself to eat some days...it would be 9:30 at night and I realized I hadn't eaten all day...whoops!) But then I gained some of my appetite back and kept most of the weight off, so no biggie. There's also the tingling in your hands and feet. I didn't mind it, but I know it drives some people crazy. One of the things my doctor was worried about with it was fatigue. I didn't have that problem at all. So it really depends on how the individual will react to it. Just some things to keep in mind. For me, the benefits far outweigh the side effects and it's honestly heaven sent. I've tried other preventatives and they just didn't work. I tried a low dose of a low blood pressure medication, but all that did was lower my low blood pressure even more and my doctor had a hard time finding my pulse not good. And I tried a low dose anti-depressant. That didn't do anything. I think sometimes it's just a matter of going through the options and finding what works.

Oh, and feel free to PM me, I've been through most medicines....

 

[FINFAN]

thank you both...the weight loss w/topomax si a huge concern as DD is just under 100lbs, 5'3: ( she is 19) and the fatigue factor.The kids in her major have been warned of the insane year they have ahead, that they will be pushing themselves harder than they thought possible, no sleep, forget social life...just a really hard year but she loves it, so...She will also be in an apt, no dedicated(easy) food plan..so I am really hesitant of the Topomax, and no docotr/health center on campus, so really, anything odd is a trip to ER.
AHHHHHHHH, I feel so bad for her but have to be aware of all dangers, future problems. I htink the side light may help, if she has a place to put it in the labs, they do not get the same desk obviously..Iwish the doctor would call back, but I know she is busy.

 

[emer95]

I just started Topamax a few months ago and I'm really happy with it! I'm the same height as your DD, but I weigh a little more (105) and I've only lost 3 pounds. I definitely have noticed a decrease in my appetite and a tiredness/fogginess feeling, but my doctor said that would decrease over time. I'm so elated to not have migraines, I honesly don't mind losing weight or being a little more tired! I haven't had a migraine since July 4th, which is huge for me. Mine tend to come with my menstrual cycle, so I'm keeping my fingers crossed.
I would say give it a try. The benefits have been enormous for me. I feel like I'm finally living my life, and not just living between migraines.

I wish your daughter luck!

 

[onelilspark]

If it helps, I did have the weight to lose. I still could probably lose another 15-20 pounds. I think that's why my doctor wanted to keep in contact. If she pays attention to the fact that she needs to eat at meal times whether she's hungry or not, she probably won't lose weight. I just didn't pay attention to it. (I'm a bad example...)

But as I said, it totally affects everyone differently and she should stay in contact with her doctor if she takes that route.

Oh, and birth control has also helped me...if she's not on it. The week of the placebo pill is the week I get my most severe migraines. I forgot to renew my prescription once and it was hell. If she's not on it, I would look into it.

 

[MainStMandy]

Depending on the time of year, I can get anywhere from a few a week to a few a month. Right now I have a sinus infection...how I found out was having a migraine for 5 days straight.

I am currently taking Atenelol (low-dose) and that seems to keep them away. I also switched to the 3 month birth control as my period is a trigger. I try to drink lots of water also. When I get a migraine I take Maxalt and it's USUALLY gone within an hour (the bad ones aren't). I am not light sensitive nor do I get an aura. FUN!

Sometimes drinking lots of water and have mint will help my migraine but usually not. And I don't get headaches, just migraines.

to your DD. It's not easy and a lot of people just don't understand.

 

[dismom2]

If your dd is going to have a busy college schedule, I would think twice about Topamax; it has a reputation for causing things like memory loss. I tried it for a short time and couldn't handle the side effects. I can't deal with the memory loss issues (or having things at the tip of your tongue, but can't quite remember), and the tingling it caused really bothered me.

Do you think all her headaches could be allergy or dental related? I hope you find a good solution. I know how headaches can lower your quality of life.

 

[Melmac]

I started getting migraines in my last year of high school and they were bad during university - one of triggers is stress so perhaps your DD can find an activity to stave away stress? I found that working out helped.

Early this year, my migraines were getting worse and I was missing work from it. My doctor pulled me off of birth control (apparently, this is a trigger for some women, but helped onelilspark so who knows?) and started me on a medication for high blood pressure (for the life of me, I can't remember the name but since I am from Canada, it is probably different anyway). Apparently, as it "loosens" the blood capillaries, it is supposed to help stop migraines. It did work but I had severe drops in blood pressure causing me to pass out so they pulled me off that. I was then given samples of all the pain medications - Zomig, etc and those didn't help too much. Then Topomax for 6 months - I didn't lose any weight (although I wish I did) and did have the tingling hands and feet (clockwork, around 10am every morning) but it also made me forget things (I read somewhere its nickname is "dopomax"). For example, I was at Tim Hortons and went to pay for my tea and I dumped the change in my hand but then just stared at it - I couldn't think to count out the correct change (thank goodness DH was there to cover me). Also, at a restaurant with friends, I paid by credit card and added the tip and bill total wrong - I was off by $6 or something! My friend caught the mistake but it was really embarrassing for someone with a degree to not be able to do grade 2 math. Also, I was not fatigued on Topomax.

However, Topomax did work - my migraine frequency dropped dramatically but it got to the point where I couldn't take the side affects. I get about a migraine every 3-4 weeks and now I just hope it is on a weekend. I use Super Strength liquid Advil when the pain comes on - I can now tell what type of headache will turn into a migraine and try to catch it early. Can you buy the Super Strength liquid Advil on the shelf in the US? Good luck to your DD - it was tough during university and I hope you find something to help her out!

PS - sorry for the super-long post.

 

[FINFAN]

well, heading in to the doctor tomorrow...topomax sounds like if she were n any other situation, would be the way to go...but honestly, she has to be at the top of her game this year...kids who drop below a B are on academic warnig and the dropped from the porgram is a c occurs in a class in their major. Background:
applied to program and was one of 75 internationally to get accepted
computer animation 4 year degree program( think Pixar), once you drop or defer, you must wait for an opening in the program to re-enter, absolutely NO guarantees of re-entereing
kids have been told this year is brutal, competitive and the deciding factor
VERY difficult to be an art major and have tingling hands...
she's tried the birth control route (YAZ), actually made the migraines increase, so stopped that.
Melmac...the forgetfullness is quite a concern ( see above) I mean, while she has lobs, she does stillhave regular classes such as Psychology and History of Animation that require good memory...man, this is SO hard!

 

[ClarabelleCowFan]

I have 2 or 3 a week on average - more around the hormonal times of the month (beginning and end of cycle and during ovulation).

I was put on Topamax for a few months and HATED it. I was a walking zombie and would fly into rages. My hands and feet tingled constantly, soda tasted like boiled dirt and I couldn't do simple math or anything that required concentration. Yes I loved the weight loss but not at that price. The pharmacist said they call it "dopamax" or the "super model drug" (because it makes you thin and dumb).

My Dr gave me a sample of Treximet which is basically Imitrex and 500mg of Naproxen. So far that stuff works great - even if I don't catch the migrane super early. I had been taking Excedrin Migraine with a Pepsi but that stopped working. The Treximet makes me sleepy but I can usually lay down for 45 minutes to an hour then I am fine - no groggy feeling and no headache!

Good luck to your DD. Have you had her eyesight checked? If she is squinting at the computer screen for hours on end then I would bet this is part of the problem.

 

[4nana]

Pam, I can imagine your worry and send best wishes to your DD in getting the proper meds to help her headaches . I suffered terribly for years with mirgaines, with more debilitating times, script meds and shots, than I care to remember, before my doctor put me on an experimental dose of the beta-blocker Tenormin (atenolol). Praise God, it was the best thing that ever happened and for as little as $3 month I am living a new life the past 15 years!!!

Sending your DD prayers , ((hugs)) and pixie dust , for a pain free and a very successful year in college!

 

[Doe]

My 17 year old daughter takes propranolol every morning. It has been amazing! She started getting daily headaches/migraines and we tried different things and finally the dr. suggested propranolol. After starting this medicine she only had to take maxalt a couple times at the beginning and now only gets a headache if she forgets to take her propranolol.
Best of luck in finding something that works for your daughter.

 

[onelilspark]

I think we all need a migraine support group

Seriously though, I'm so greatful that the Topamax worked for me, I didn't even know that there was the nickname "Dopamax." I do forget stuff occasionally, but I've always been like that...I don't think it's gotten any worse (or maybe I can't remember!! )

I think what's apparent in this thread is that what may work for one person, just doesn't for another. You have to keep trying until you find something that does. Good luck to everyone! Here's hoping that one day there's a cure!!

 

[Jennasis]

Talk to your doc of course, but I HATED Topamax with the white hot intensity of 10,000 suns!

It made me beyond doepy...I'd drive somewhere and abruptly forget where I was going or why I was going to the store or how to even get there...in the mIDDLE of driving! I couldn't remember names, faces, dates, do simple math (drop 10 pennies on the floor and ask me to count them and it would take me an hour).

Soda (any carbonated beverage) tasted awful.

I got this weird double vision thing going from light to dark (like from a dark theatre out into the sun).

Tingly hands and feet.

A NIGHTMARE drug, that also did not help my headaches. My saving grace? KEPPRA. Talk to your doctor about it. Saved my life. No side-effects.

 

[ClarabelleCowFan]

I think we all need a migraine support group

Seriously though, I'm so greatful that the Topamax worked for me, I didn't even know that there was the nickname "Dopamax." I do forget stuff occasionally, but I've always been like that...I don't think it's gotten any worse (or maybe I can't remember!! )

I think what's apparent in this thread is that what may work for one person, just doesn't for another. You have to keep trying until you find something that does. Good luck to everyone! Here's hoping that one day there's a cure!!

I hope there is a cure for migraines too! All of the women in my family suffer from them horribly. Even my 2 DDs get them - my youngest DD started having daily migraines at age 5.

Talk to your doc of course, but I HATED Topamax with the white hot intensity of 10,000 suns!

It made me beyond doepy...I'd drive somewhere and abruptly forget where I was going or why I was going to the store or how to even get there...in the mIDDLE of driving! I couldn't remember names, faces, dates, do simple math (drop 10 pennies on the floor and ask me to count them and it would take me an hour).

Soda (any carbonated beverage) tasted awful.

I got this weird double vision thing going from light to dark (like from a dark theatre out into the sun).

Tingly hands and feet.

A NIGHTMARE drug, that also did not help my headaches. My saving grace? KEPPRA. Talk to your doctor about it. Saved my life. No side-effects.

When I was on Topamax and we would go out to eat, DH would slide me the check when we would go out to eat to figure the tip. I would stare at it and not be able to figure 15% or 20%. I have no idea how well or how poorly we tipped the servers during my "dopamax" days. The rages scared me more than the other side effects though. The slightest thing would set me off. I slammed the front door so hard that I split the wood in 2 and we had to buy a new front door! That was the final straw for me and I told my Dr that I was not taking it anymore. I had to wean off of it slowly but I was SO GLAD when the side effects finally wore off - about a month or 2 after my last dose.

Good luck, OP. Hope your DD finds some relief soon!

 

[FINFAN]

Thank you all SO much, it is a huge help to have real peoples experiences vs reading about what "may" occur. It is especially helpful since we are fighting the calendar...DD is set to be back 8/11...and now DR. wants to have another MRI done, which is good as DD's terrified she has a brain tumor or brain cancer ( doesn't help that our town lost 2 children this July to a rare form of brain cancer, so it is on her mind)
but to have those tests run, results etc before the 11th ( well the 6th really, as we have a flight booked at 6 a.m. for a birthday WDW weekend for DS but looks like we will have to cancel that )is going to be hard.
I am stressing out, need to pull it together so DD doesn't get even more concerned...
sigh...thanks again everyone for posting so quickly, yeah, I think a support group would be a true benefit!

 

[minechuchie]

Finfan, you have one of the best headache centers in the country right in your area. The Diamond Headache Institute. We actually fly up to Chicago about 3 times a year to see Dr. Diamond. My husband has had non-stop headaches since he was 11 and Dr. Diamond did wonders for him. We ran the gambit of every Dr. in PA. Hope this helps some. Good Luck!!! Chuchie

 

[FINFAN]

Finfan, you have one of the best headache centers in the country right in your area. The Diamond Headache Institute. We actually fly up to Chicago about 3 times a year to see Dr. Diamond. My husband has had non-stop headaches since he was 11 and Dr. Diamond did wonders for him. We ran the gambit of every Dr. in PA. Hope this helps some. Good Luck!!! Chuchie

WOW! I had no idea! Thanks Chuchie...looks like DD is going in for an MRI tomorrow( she is REALLY freaking out and wants to rule out anythig wicked)...but I totally forgot that she has a permanent retainer in her lower teeth..hopefully she can still have it done, not sure what to do if not.
I will CERTAINLY look into the headache center
Thank you so much!

Pam

 

[JerseyMamaBear]

I have suffered with daily cronic migraines for 17 years now. I have tried everything from imetrex injections to massage to chiropratic care and every med out there. It wasent until this past march when my obgyn gave me fiorocet to take that I finally got some relief. Since I am pregnant it was one of the few safe meds for migraines out there to take. I was even able to stop my caffeine addiction with it and now only drink water or juice. It took about 2 months but it is worth it. I now only get them once every week or so.

How much caffene does your daughter drink? That may be causing it.