First Migraine, Advice?????

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First Migraine, Advice?????

Post  CaityM12 on Tue Sep 02, 2014 3:51 pm

Hi,
This is my first migraine. I have had a constant migraine for 21 weeks now, been in the hospital twice, and i really just want this to end. I have tried 12-15 different type of prescriptions in the past few months and none have works. I have tried everything from Motrin to Dilaudid to Topimax. I am only 15 and I really don't want to live with this for any longer, i haven't had a pain feel day in almost 5 months. I can't do anything I love like sports or volunteering and it sucks so really I will take any advice I can get. I come from a long family history of them both my parent have them but none of the meds they take or have taken work for me, I am taking topimax now 150mg per day but my migraines are never below a 7/10 in pain. I am light, noise, smell sensitive, nausea, tightness in the forehead and the side, dizziness, and a bunch of other stuff. so really anything to help me i want to go through high school and college, get a job and have fun doing it not have this stupid headache and be in pain every second of every day.
Caity

CaityM12

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Re: First Migraine

Post  micheletroyer on Wed Sep 03, 2014 6:47 am

Hi Caity!  Welcome to the forum.

My best advice for you is to get "reasonable accommodations" through your school and doctor.  These can be carried on into college (that's how I got through).  If you need to take your tests in a darkened room or have paper handouts printed on different colored paper (mine were all green), you can get these.  I also found it helpful to take tests in the student support center at my university as opposed to dealing with everyone's stress in the classroom.  I even had one professor who came to my house and "spoon-fed" me the lessons, and allowed me to work in groups with the same people all the time (who were supportive of me and came to my house when I couldn't attend class).  Other professors videotaped their lectures for me when I didn't feel up to getting out of bed.

Also had to tell a classmate who bathed in patchouli perfume that she had to sit in one corner of the classroom, while I sat in the opposite corner, as far away as possible.  She was somewhat offended when I asked her to do this, but it worked out.

Your pain may go away eventually, or it may not.  I have had chronic daily migraines since 2008, which prompted me to go on Social Security Disability.  It took me 5 years to get it, but I was back-paid for all but the first six months of the headaches.

Currently, I'm trying physical therapy on my neck.  I had my first session yesterday, and the massage I got did seem to help my pain.  My neck muscles are so tight, they are triggering migraines and keeping them from going away.  Botox has also been helpful, although it hurts like an SOB to get the shots, especially in the forehead.  No preventative medications seem to help, and I go in to the doctor at least once a week for rescue meds.  My neuro has set a limit on the amount of Demerol I can have per month, and it's up to me to decide to dosage I need on any specific visit, within the 150 mg the neuro has prescribed.  He says this amount will not cause rebound headaches.

I also treat my daily migraines (at the lower levels 6-7) with Reglan, Phenergan, Benadryl, Ibuprofen and up to 1200 mg of magnesium per day.  This usually brings my pain level down to 3-4.

Wishing you pain free days very soon, and the life you want to live.  Sometimes it takes awhile to get an answer on this board, because we're all in pain.  Just be patient, and someone WILL reach out.

Michele
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Re: First Migraine, Advice?????

Post  Seaine on Fri Sep 05, 2014 4:58 pm

Hi, I'm wondering if there is anything you started doing differently about 21 weeks ago. I only ask this because I think it's relatively rare to start off right away with a constant migraine although anything is possible. For example did you just start the birth control pill around then, or anything else different?
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Seaine

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Re: First Migraine, Advice?????

Post  CaityM12 on Sat Sep 06, 2014 7:16 am

No not really. I was had my last volleyball tournament that i played in while i had it because i thought it was the flu or something. It was the middle of the school year so nothing stressful that i can remember and I didn't start any new medications.

CaityM12

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Re: First Migraine, Advice?????

Post  Migrainegirl on Sat Sep 06, 2014 9:15 am

Caity,

So bummed for you! Lots of people here who were not helped by the preventatives either. Really it's medication roulette. The doctors have no idea what will help a given person.

Lesson number one - you will need to learn to be your own health advocate. Otherwise you will just get passed around when they can't figure out how to help you, and you will fall through the cracks. Be assertive and don't let that happen. Because you are a minor you will need your parents to help with this. The most important thing is never give up! There are solutions out there. You just have to keep trying.

Some ideas to try if the Topomax does not work out or causes too many side effects.

1). Because of your age, it's very likely hormones play a role. Many migrainuers start getting migraines as teenagers (mostly women). I have had very good luck with bio-identical progesterone. Do not take birth control pills (not the identical hormones the body produces) as this can make them worse. Most doctors are not trained in this. Find a good naturopathic doctor in your area. My headaches went from nearly everyday to about 20-30% of days which at least made me functional. Magnesium and other vitamins have also been proven helpful.

2) Check out the Cefaly device which has recently been FDA approved. I am finding that helpful in cutting down frequency and severity.

3) Botox is working for many people. Because yours are everyday you should qualify for this

Most importantly find a doctor who listens to you and is willing to work with you to get better. Some are not very sympathetic or helpful. Don't let that get you down. Just find another doctor.

You will find this is a great site for information and support. You are not alone. People here will help how ever they can. Hang in there!
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coping mechanisms that work! (for fragrances, lights, noise triggers)

Post  jannawags on Mon Sep 29, 2014 5:54 pm

Try looking at my post as entitled above. I was just diagnosed and I was able to trace it back to the above triggers. Then I discovered interventions that worked for me.

Best wishes

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Re: First Migraine, Advice?????

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