My niece was diagnosed less than a week ago with Chiari I. She is 12. She has been having migraines for a while and wears glasses. She was sent to a neurologist and was found to have this disorder. She was also placed on 5 medications (topamax, rizatriptan, migrelief, prednisone and prilosec.) She has been drowsy, nauseous, flushed and tingling in her face since starting this medications. Is it normal to be placed on all these medications at once? Any information would be greatly appreciated since we are new to this disease. Thank you.
Morning LindsayAllison,
I am so sorry to hear about your niece going through this 
. Hope her migraines and symptoms get better for her! Not sure if I can help since I am 31 and there is a big age gap. But I can say I had those exact symptoms throughout my life. My symptoms got worse especially the migraines (started in my jaw with TMJ), tingling/numbness in my face, drowsy, nauseous, limp on my left side of my body (same side as my face), uncoordinated (been coordinated my whole life), lightheaded/dizzy, and wear glasses too. The list can go on and I hope its not scaring you. Ended up having surgery last year on November 28, 2016 and definitely have improved so much :)!
As for medications, I never really went on many medications and plus I had reactions to most of them. My neurologist said after surgery medications affect you differently. Before surgery just took advil, extra strength tylenol, lots of ice packs, and changed my diet. Never heard of someone getting on medications all at the same time. Wish I had more information for you about medications.
Prayers for your niece and your family!! I hope she gets better and stronger each and every day!
Ashley
Yea. I’m worried about the symptoms she is having with the medications. She was just having migraines. Now she feels awful. Tingling and numbness in her face, flushed face and nausea. I’m suprised they put her on so many medicines at one time. I figured they’d try one at a time. They said her brain was out 6 to 8 cm? I guess it’s cm. Is that a significant amount in this condition?
Well I just got a phone call they are rushing my niece to the ER now. She is now having difficulty swallowing. Please keep her in your prayers.
They didn’t get to see the neurologist that they originally saw who put her on the medicines. The on call neurologist said it was probably a side effect of the prednisone and sent her home. They basically said they didn’t know what to do for her.
Oh my gosh, is she ok?? I am so so sorry she is going through this . So do you think it was the medicine causing swallowing issues? Wish they could have done something for her.
I’ve heard 6-8mm long usually has more symptoms. But it is different for each person with Chiari. Mine was 12-13 mm long before surgery and there were lots of symptoms. You have good days and bad days, its different each day on symptoms. The more activities or tasks I did, the worse my symptoms became. Are her symptoms random or consistent each day?
Has she seen a neurosurgeon? Seeing a neurosurgeon helped me understand what Chiari is and to get another opinion on it. A lot of doctors are unfamiliar with the condition, so I did lots of research before seeing one.
Here is a good site: National Institute of Neurological Disorders and Stroke:
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Chiari-Malformation-Fact-Sheet
I am keeping her in my prayers every day!
Ashley
Think happy and positive thoughts 
!!
I believe its the medicine that has been casing the swallowing problems. They ended up taking her off the prednisone and are going to increase her topamax because she is still having headaches. Thank you for your reply.
My niece had a good day today. Seems like taking her off the prednisone has helped. They are gradually increasing her topamax now. Hopefully good days continue to follow. Thank you all so much for your advice, thoughts and prayers. They are much appreciated.
So sorry your niece is going through so much. Her symptoms are all symptoms of chiari, including swallowing issues. Hopefully her symptoms will calm down. It is not unusual for them to come and go, though unfortunately a person with chiari is usually dealing with some symptoms, perhaps not all at once. This is not to say that she is not currently experiencing all the symptoms that you have listed. Hopefully some will calm down, though may reoccur; this is the nature of chiari. Regarding medications, it is always a good idea whenever possible to introduce one medication at a time, this way you can see how each medication affects her. If she does ok, then add the next medication. If your niece could see a chiari specialist that would be ideal. There are many neurosurgeons who have experience with chiari, but if she could see physician ( probably would be a neurosurgeon) whose practice is solely chiari that would be the best situation. It doesn’t mean that she will have surgery, it just that someone whose practice is solely chiari is the most knowledgeable and up to date. Look at conquerchiari.org
Wishing your niece all the best
My son age 11 has been diagnosed with Chiari I. I have been to Neurologists and Neurosurgeons from Coast to Coast. I would strongly suggest you get 2nd and 3rd opinions. I would suggest you go to a Neurosurgeon for an opinion as soon as possible.
Let you niece know their are other kids out here that are fighting this disease.
My prayers are with you and your niece.
Thank you for your advice. I wish your son the best of health. What have they advised for him?
My niece had a second opinion from a neurologist yesterday. This neurologist said she thought her chiari was more exrensive than the previous neurologist had said. My niece is having migraines every day. This neurologist said they could possibly do nerve block in the brain or up the nose. She also talked about surgery. She has another MRI scheduled for April 5th. They are debating on whether to try these nerve blocking procedures until then, because of all the pain she is having. Is anyone familiar with these procedures?
My niece had a MRI of her veins. They found an occlusion of the jugular vein. The 1st doctor is wanting to do an immediate spinal tap to check the icp. We don’t really trust this doctor. Are there other ways to measure the icp? Has anyone had experience with this? What are the treatments for a jugular vein thrombosis?
The 2nd Dr. just called and said she believes there are more than 1 clot. She believes the spinal tap can wait.