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19663976 tn?1482041525

Could this be chiari? Or what is going on?

I posted this on a migraine forum and it was recommended that I post it here. So here goes:

Hi guys. I'm 16 and have migraines every single day and have for the past two years. I've been to a neurologist as well as many other doctors and they have not come up with a diagnosis. They didn't even take an MRI or anything else. The neurologist thought it was unnecessary to do any tests. Here's everything that's going on:

Symptoms:
-fatigue
-tingling in hands and feet
-irritability
-buzzing in ear
-flashes of light in eyes, etc
-sound and light too much
-feels like someone's squeezing my brain like a lemon sometimes
-constant pain in the top of my head and both sides
-suicial thoughts
-inner tremor throughout entire body
-shaky hands
-hard to focus
-Strange smells
-Decreased appetite at times
-Depression
-Nausea
-Increased sleep or no sleep at all
-Taste changes and strange tastes
etc. my migraines are so bad that i had to leave school and become homeschooled as i was missing too much and was unable to go in. A lot of days i can't get out of bed because it hurts so much. It's constantly a 9 or 10 on the pain scale. There have been times when it hurts that i can't even move or speak. When my parents try to talk to me, i can't reply cause it hurts so bad and every time someone speaks it makes it hurt worse. Light, sounds, and smells trigger it to get worse. I had to quit horseback riding, which is my most favourite thing, because of these migraines.

Things we've tried that didn't work:
-Imatrex
-Aleve
-Ibuprofen
-all kinds of Tylonel
-Cymbalta
-Topamax (in very high doses)
-Midol
-Hormone meds to rule that out
-Antiseizure meds
-Antipsychotic meds
-Migraine cocktail IV
-Antidepressants
-Aspirin
-Naproxin
-Midrin
-Zoloft
-Excederin migraine
-Head weights
-Traction
-Caffiene
-Up to 80oz of water every day
-Apple cider vinegar
-Stretches
-Pressure points
-Being taken off birth control to see if that was causing it
-B Vitamin Complex
-Magnesium vitamins
-Essential oils
-Aromatherapy
-Acupuncure
-Chiropractic
-Massages
-Physical therapy
-Toradol shots
-Toradol in an IV
-multiple IV's and trips to the ER
-Composine
-Benedryl
-Heat packs
-Cold packs
-Laying down in a dark room
-Distractions
-Multiple nasal sprays
-Hands and feet in cold water with heat on neck
-Hands in ice water (pinterest idea)
-Diet changes
-Exercise changes
-Sleep changes
-Take away possible stresses
-Art therapy
-Depitcote
-Talked with a neurologist
-and the list can go on and on.

I've lost hope and i don't know what to do. The ER has told us that we need to quit coming there and my doctor needs to figure things out. The thing is, my doctor doesn't think an MRI is necessary. He also said he would refer us onto a different specialist because i'm "too difficult". He never referred us on. His nurse just said, "some kids just have headaches." These aren't headaches. I don't have a life anymore. I'm in pain all the time- throbbing, stabbing, and pushing pain that won't end. Ever.

Does anyone have any suggestions? Please? I'm sure i've left some things out...
i'm 16. I should be in school, living my life and enjoying it- not spending my time in bed, crying and screaming about if the pain will ever go away or if anything will ever help..
5 Responses
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620923 tn?1452915648
COMMUNITY LEADER

  Do have copies?
Helpful - 0
Avatar universal
I have had migraines for years and a year ago they became daily. I !ike u have tried everything i can think of. I can happily say I have had luck with a diet called AIP or autoimmune protocol. It is a very hard strict diet but its the only thing that has worked for me. Give it 2 weeks and see how u feel.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

Did you request a copy of the MRI and report? If not, request it from the facility that did the study,,,,,not your Dr that ordered it.

I know it is not going to be easy, and telling you that you are not the only one to be told these things will not help you feel better....but knowing you are not alone may give you some help/support until you can get to a Dr that is well informed and experienced to help you.
Helpful - 0
1 Comments
We got the MRI results back today. The doctor said everything looked perfect..
19663976 tn?1482041525
i've gone to numerous doctors and all they have to say is that i'm "too difficult" and they don't know what's going on and put me on more pain killers that don't work. i finally got an MRI but with the holiday i won't know the result for a few more days. i'm being referred on to the headache specialist in Des Moines Dr. Lynn Rankin and am on the waiting list. but as of now, i'm expected to move as normal and pretend i'm in no pain when i'm in excruciating pain and can do nothing for it.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Many with Chiari are first told they have migraines and anxiety....and our symptoms are too numerous to list....and even with similar symptoms for those with Chiari and yourself, that doesn't mean you have Chiari...but it is just one more condition to rule out.....

There are several conditions that can cause the same symptoms as Chiari...such as lymes, lupus and MS and then Chiari has related conditions that can also cause the same symptoms.....

Finding the right Dr is key!

Here is a listing for your state....this is not a referral nor an endorsement for those listed ...this is only meant as a starting point to research Drs near you....keep in mind you may have to travel.

IOWA

Dr Arnold Menzes
200 Hawkins Drive
Iowa City, IA 52242
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