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

[LMC]

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.

I do this too. I take topomax, something else(can't remember the name brand) but it starts with an A, and I use MAXALT when I get a full blown headache. After getting my migraines under control on the two medications, I noticed that I would have bad ones twice per month (I went from having them about 5-6 days per week to a few days per month!!) So I went on BC pills. It has helped in combination. I take the 3 month pack of pills so I only have to worry about it 4x's per year now. My life is so much better. But, the maxalt is the only thing that works when I get them. Also, sunlight and flourescent lighting are triggers for me. If I have to spend all day at the doctors w/ my special needs child, I'll have a migraine no matter what else I do.

Unfortunately, I don't have the weight loss effect, maybe I need a higher dose!!!

 

[Melmac]

Oh my gosh...I am SO glad my fellow Topamax users posted about soda (I say pop) tasting funny. I never associated that with the Topamax and I had NO idea why I suddenly couldn't stand the taste of it! I took a drink of Sprite one day at Subway and I almost spit it out and told my husband something was wrong with it. He tasted it and thought I was losing my mind, said it tasted fine. It was from a fountain, so I thought it didn't have any syrup in it (you know how it runs out sometimes?). So I bought a can of it, and same thing. My husband did not believe me that pop tasted strange to me all of the sudden. I used to love it, but now I don't want anything but water. Maybe that's a large part of the weight loss- the sudden aversion to pop!

I wonder if this is why I didn't lose any weight ... I hate pop and don't drink it!

updated that the doctor feels perhaps we should postpone WDW right now, or at least don't do any rollercaosters/jerky stuff....we do not have the MRI results yet, btu based on what DD has been telling her, and that DD is on day 6 of pain( tho it has been letting up here and there and no barfing yet)...

I am sorry to hear that you may have to postpone your trip Hopefully, you will get some good news tomorrow. Fingers crossed!

 

[FINFAN]

DD hit w/another migraine around midnight...she had maybe 8 hours of relief?We see the doctor around 2...I almost wish the migraine were still going on, yet I want it to go away to give DD a break. Another poster mentioned why an MRI vs a Cat Scan, now I am worried that we did not have an accurate enough test? Is an MRI the general starting point and THEN a Cat Scan? Have to run DS to his ortho visit first.....will update when we return, at least, I am HOPING I have something to update. I wrote sown all the meds everyone has mentioned and experiences, so again, thank you for all the help!

 

[ClarabelleCowFan]

DD hit w/another migraine around midnight...she had maybe 8 hours of relief?We see the doctor around 2...I almost wish the migraine were still going on, yet I want it to go away to give DD a break. Another poster mentioned why an MRI vs a Cat Scan, now I am worried that we did not have an accurate enough test? Is an MRI the general starting point and THEN a Cat Scan? Have to run DS to his ortho visit first.....will update when we return, at least, I am HOPING I have something to update. I wrote sown all the meds everyone has mentioned and experiences, so again, thank you for all the help!

No, you did it correctly. My neurologist told me that a Cat Scan is like a fuzzy black and white image whereas an MRI is a clear color image. The MRI is MUCH more accurate in pinpointing things in the head.

Hope you have some answers soon!

DD10 had a raging migraine last nite. She ate some Ramen Noodles and dumped the whole flavor packet in it. MSG is a huge trigger for her and she suffered the consequences all nite.

 

[FINFAN]

running out the door to ortho but quick checking...man, MSG too? DD lived on ramen at school last year, and planned to again this year. She ony uses 1/2 a flavor packet tho, due to the insane amount of sodium...arrghhhh, this is so frustrating! Sorry your DD paid the price, boy do I feel for her and everyone else with this.

 

[ClarabelleCowFan]

running out the door to ortho but quick checking...man, MSG too? DD lived on ramen at school last year, and planned to again this year. She ony uses 1/2 a flavor packet tho, due to the insane amount of sodium...arrghhhh, this is so frustrating! Sorry your DD paid the price, boy do I feel for her and everyone else with this.

Different people have different triggers but I tend to have most of the same ones that my Mom did and my girls have the same ones as well - not sure if there is some genetic predisposition or what but I found that interesting.

Our environmental triggers are:
*not enough sleep
*too much sleep
*loud noises (like concerts or jackhammers)
*bright sunlight or prolonged exposure to flourescent indoor lighting
*Stress
*Exposure to cigarette smoke
*Hormonal changes (usually at ovulation and first and last days of cycle)
*Barometric changes (this has gotten worse as I get older - my kids don't have this one yet)
*Low Blood Sugar (not eating for extended time period)
*Caffeine Withdrawal (must have a Pepsi a day)
*Exposure to strong odors (heavy perfumes, etc...)
*Birth Control Pills

Food triggers are:
*Nitrates (hot dogs, lunch meat, salami, etc...)
*MSG (soups, chinese food, Ramen)
*Dark Chocolate
*Wine (obviously no clue if my DDs have this one or not yet!)
*Aged cheese (especially melted cheddar cheese)
*Nuts (any kind but peanuts are the worst)
*Artificial Sweetners (aspartame, splenda, nutrasweet)
*Any allergen (I am allergic to chocolate and onions and if I eat them I usually end up with a migraine on top of my allergic reaction)

My Mom could not eat any cheese, corn, chocolate or citrus - those were her biggest triggers. Luckily I have only noticed the aged cheeses and dark chocolate as triggers for me so far.

Have your DD keep a diary of everything she eats or is exposed to and when she has a headache and the severity. By tracking down her triggers she can hopefully avoid some of the headaches. Not everyone has every trigger but I have found that the above list covers most of the common triggers.

 

[FINFAN]

well we are back... GREAT NEWS, NO TUMOR!......MRI ruled out the wicked scary stuff, but did show a questionable area...so DD went thru more testing( w/neurologist) today, and that cleared up the "shadow" concern.
bottom line, she is not to head back to school early to help with Orientation while we start her on a new med, and she will also take Imitrex for the pain...has to stop her BC pills for now, have regular blood pressure checks..hers was VERY low...like, "are you still with us?" low... No migraine at the moment, which is awesome. After todays stress I thought I was getting one
So, we go back on Friday, and then again Tuesday back to Neurologist, should get more specific results then.
Dr's wanted to try Topomax, but DD and I said no, not too comfortable trying that and heading off to school , can't remember the name off the top of my head, but another beta blocker and then the Imitrex for now.
I t has been a long day...had to contact the school but they were very understanding, had to cancel flights, they were NOT understanding so ate $225 on that, just to turnaround and have to book NEW flights for 2 weeks from now.
HOWEVER......I think learning that she does not have a tumor or anything life threatening is a huge relief for DD,( for all of us, but she was internalizing it) even tho her volunteer work and WDW are cancelled, she is in a pretty decent mood. We are so grateful and relieved it is a mageable type issue, well, I know it will rough and painful, but really, we were SO scared.
Wait, did I say 'CANCELLED" for WDW? I meant to say











"post-poned"
We had plans for the FD at CSR 12/17-27...DH said when I call to cancel this weekends trip @ CR, see if I can re-schedule it during our Holiday week...I saw the rates online... but asked...
THEY CARRIED OUR 40% PIN OVER TO 12/23!!!!!!!!!!We will have 2 nights for DS birthday surprise afterall, only in December, and we will have Christmas Eve there! We have not seen the Castle with the icicle lights all over it, and now we will be able to from our room! As before, we are keeping it secret as twice now we ahve tried for this in August, only to have it fall through...so lets hope 3rd time is the charm! Our price is higher overall because the base rate is higher, but the PIN saved us $200 over the current discount, so we are thrilled. So, looks liek we are starting at CSR and ending at CR...AND the doctor said the theme park should be fine,,,the reason she was advising against it was the shadow she saw on the MRI, and had to do further testing and wanted to be safe than sorry. She said while it looked suspicious she felt it was going to be fine, but until absolutely sure...so, I am glad we did not take her comments lightly.

Well, heading off to collapse!


Pam

 

[FINFAN]

36 hours and no migraine... we go back tomorrow for follow-up results and allergy results....she got to sleep 2 nights in a row!

 

[onelilspark]

Yay for nothing really bad!

I've always said that if the worst I have to deal with in life is getting migraines, I'm really blessed in the end because it's nothing life threatening

As for the low blood pressure...that's how mine is. Whatever you do...do NOT let them put her on any kind of medicine for blood pressure. I went to a neurologist and he said, "we're going to try this medicine, it's a low dose of a low blood pressure medicine." (I forget the name of it now.) And I said to him, "But I already have really low blood pressure, is that the best option?" His response, "Well it's only a low dose, so you should be fine." Ummm, no. I wasn't light headed or anything, but it went from the doctors & nurses having a hard time finding a pulse to them not being able to...which is kind of scary. So don't let them do that!!!

And woo! WDW!

 

[ClarabelleCowFan]

36 hours and no migraine... we go back tomorrow for follow-up results and allergy results....she got to sleep 2 nights in a row!

Thank goodness. Glad she got some relief.

The consecutive headaches may have been constant rebound headaches. That is a hard cycle to break.

Make sure your DD avoids all of the common triggers (stop taking those bc pills!!) and see if that helps. Good luck!

 

[FINFAN]

DD was migraine free for 3 days... went back for follow up stuff yesterday, no allergies found,,,blood pressure still low , but not that out of the norm for her. Lat night about 8 pm , hit w/a migraine. She tried the Imitrex fo rht efirst itme, and it helped! I t did not completely take the migraine away, but she it was livable, she did not have to lie down in complete darkness w/a compress. I htink the weather was also a culprit yesterday..rained all day, very muggy today. So, I hope she is on the right track.