big changes in my little world.....

Dear Chelsea:

 

My name is Clemmie, and I read your post and previous posts this morning, and am really amazed at your progress!  Your recent decisions sound very wise and it is so inspiring to hear about your family providing so much support--they ROCK! 

 

Being a migraine sufferer since age 2 (I am now 51) I wanted to first comment on the drug Indocin that you asked about in a previous post.  It is a potent anti-inflammatory drug that historically was prescribed more (before safer types became available) and is sometimes chosen now because of it's potency (used for inflammatory conditions, including severe arthritis).  I am taking it every night, 2 hours before bedtime to PREVENT nightly hypnic headaches which occur during sleep and wake you up in excruciating pain.  Indocin is one of the few meds to treat this type of headache which is in the category of inflammatory headaches.  It usually prevents them!

 

I also have hormonal migraines (not inflammatory, and mine do NOT respond to Indocin) for about 12 days per monthly cycle.  I now take Depakote ER (an antiseizure drug also used for migraine prevention) nightly, plus Maxalt and Frova (triptans) during acute attacks, and Fioricette and/or Stadol (nasal narcotic) when those fail. 

 

This "formula' for me is working better than any of the previous 20-30 "combinations" of therapy I have tried, and it did take a few years to get to the best combo for my situation.   I am really grateful to my migraine specialist and those along the way who have helped.   And also to the leaders of this website who have provided sound info over the years (here and on About.com) to help us work with our physicians and mention things that sometimes our physicians forget to mention. 

 

The reason I share this "history" is that I wanted you to know that there were times that I felt hopeless; some nights the pain was so excruciating I did not want to live to see the next day.  But things are so much better now, and I rarely have one of those awful nights.  But when they do occur I have a husband who is totally understanding and helpful.  Night before last he was by my side from 9pm to 3am emptying my whoopy bucket and getting me more meds because I kept throwing them up.  Unfortunately the Stadol makes me extremely sick to my stomach, but I take it to avoid going to the hospital.

 

I was told when I was in my twenties by a FORMER friend that no one would ever want to marry me because she had seen how horrendous my headaches were, and she knew I was chronically constipated and distended.  Well, my constipation was cured about 7 years ago (thyroid supplementation did the trick!) and my husband married me 25 years ago before any of this was solved.  So there are good men out there who do not shy away from committment due to health issues that their "partners" have.

 

And finally, the curtains your Mom made sound adorable and SO functional!  I have "black out" fabric on almost all the curtains/drapes in our house for that same reason.  Also wanted to let you know that if sound makes your headaches worse, there are many styles of earplugs available (some are soft) that help.  If there is an odor in your parents home (for instance, fish dinner!) that is making you queasy, close your bedroom door and stuff the bottom with a towel to try to close off odors. 

 

And lastly, Teri wrote a great article about the need for good sunglasses for those of us with sun sensitivity.  A brand sold at WalMart (called PolarShield or Solar Shield -- polarized, UVA UVB shield) that actually surround my regular glasses with almost zero light penetrating in the periphery, are my personal favorites.  I have them in my car, in my husbands car, in my pocketbook and in the house (for when I exercise, which is every day that I am able!).

 

Thanks so much for sharing your inspiring news.  I hope the effexor and your other meds continue to help, and that you continue to derive all the benefits of exercise (including endorphins!) and living among people who care about you.  I wonder if your Mom picked out the "star" fabric for your curtains because she thinks you are a "star"?   I know she must be very happy that you are doing better.  Clemmie

Chelsea,

I am so happy for you. Finding a stable, supportive environment is important. Probably better than anything else. When my son moved out, my migraines decreased.

 

Debbie

Sounds like you are on the right path!!! Good luck with all your "pro-active" steps! Isn't it amazing when you have NO headache/pain for even a little while?!?!? I still have daily headaches, often causing me just to go to bed early... I really wish someone out there could do something for us!!!

First, let me apologize for not getting back to you sooner regarding our other conversation on IIH. I'm glad to hear your pressure wasn't really high. Here is something to think about - some people can handle higher pressures better than others. 200 for some may be ok. Some others have chronic head pain at 190, and do better at 170. Just my two cents worth.

 

You've had a lot of positive changes recently, I hope they continue. Reducing your Migraine frequeucy is great, let' hope that continues as well.

 

Keep us posted, ok?

Your post makes me happy for you. If you don't mind me asking - why did you have the spinal taps done and what did that do for your migraines?

Dear Chelsea....I also get migraines and have gotten them since I was in the 3rd grade and I am now 63 yrs old.  I'm writing you about your question on losing your job. My son also gets migraines and he found out thru someone that migraines is considered a  medical problem just like seizures. So he said for you to go to your Human Resource Office and ask for a FMLA (family medical leave act) form. Take this form to your neurologist to have it filled out and return the form back to HR office to be kept in your employee file. This form needs updated every 12 months. My understanding is that your employer can't fire you because of your migraines due to this FMLA form.

Keep me informed as to what happens.

Maybe, misery loves company, but it just helps to know that I am not alone. Fortunately, like you, I have a lot of family support. Now and then, though, I just get so MAD that I am missing out on so much. I came to this site for the first time, today. I was hoping to find some new tidbit of info that would help. I'm still looking. It did help to read your entry. I'm glad that you are doing better. Hopefully, it is a trend. Thanks for sharing your story. It helped.