This is a vent session..my apologies.

This is a vent session..
thegirlwithbrowneyes Today at 2:23 am

.So I finally got on insurance (recently married, got on husbands). I was so excited. I am on Prestiq as a preventitive (although the last month it hasn't been doing anything for me.) I also take Relpax as a rescue med.

I had borrowed money from my Mom to pay for the 128 dollar Prestiq until I could get my verification of insurance. I went back tonight with my husband to try and get the money back (The pharmacy has a 10 day period where they will refund your Money once your insurance goes through). Sadly, I was told that the insurance required prior-auth and I'd have to wait 72 hours. I asked what this entailed because I was truly curious as to what kind of show the insurance company was running..

"Well, the insurance company wants your doctor to call them and tell them whether or not you have to be on the Prestiq or if it's okay for you to take these other cheaper medications."

I'm like Really??? What do I even have insurance for??!?!

Then, I the really discouraging part...The Relpax. I asked the pharmacy tech to go ahead and run through the Relpax to see if it required Prior Auth. It didn't. Unfortunately, my insurance only allows me 6 pills a month. 6 PILLS. That's like, Okay Ms._____ You can only have 6 migraines a month. 6 A MONTH?!?! Now, I'll admit there are months that I don't even have 6. But December and January, I've had 6 a week.

To top it all off, even with insurance, the 6 pills are $75. That's 12.50 a pill. That's right 12.50 for 1 Pill. So, not only do I only get 6 pills a month, I have to DECIDE which migraine is bad enough to need a Relpax.

Yesterday and Today were horrible as far as my Migraine go. I was so nasueated all I wanted to do was make myself vomit. My kneck was in so much pain I felt like someone had taken a sledgehammer to my kneck. Do any of you have kneck pain with your migraine? For my it almost feels like the migraine is actually in my kneck.

The pain has finally subsided. I was able to get out for a little bit with my husband driving so that I could run errands I needed to run.

Laci

That totally sucks. I love the way insurance companies decide how many times you are allowed to get a migraine in a month.

My HA specialist would actually agree with the company though, as she says the max on any abortives are six per month. I honestly don't get it. What are we supposed to do after the six are done for the month?

I've been through this with insurance companies before. One carrier denied a med I was prescribed and had the gravitas to send me a list of alternate drugs to try. Excuse me, MY doctor prescribed this for a reason based on HER diagnosis.

So anyway, I called the insurance company (because their meds had already been tried or were not appropriate for me), and started an appeals process. Luckily during this process I changed jobs and my new insurance covered it.

Oh, I did receive a letter of denial on my appeal from my old insurance stating the medication was not "usual and customary" for my diagnosis. My PCP was just as baffled by the response; said she never heard of this kind of rubber stamp denial before!

You just can't make this stuff up!

I'm sorry thats tough! I hate when meds get low and you have to pick and choose which migraines to use pills for.

Just yesterday I got a migraine with neck pain. It was horrible, I'd never had that before. I don't know if the two were related. I'd have to guess they were since it was all on the same side. There is always a possiblility that I slept wrong the night before but I woke up with all this pain on my right side. Ick. That neck pain is the worst! I couldn't turn my head in any direction! Ouch.

One thing I can suggest if you can't think of any other option is when you don't use all six for the better months save them as long as you can to add to your cache for worse months when you need more.

Another idea is when people give you gift certificates for birthdays or christmas ask for money for the pills instead. See if you can get a gift card for whatever pharmacy you go to. Also, ask for samples from your neurologist, primary care doctor and your OB/GYN. They all carry some samples of migraine medications, maybe you'll get lucky. My OB/GYN carried Frova, Treximet, Imitrex, Maxalt and Amerge! Thats how I got to try so many in the first place.

Good luck! Hope you find a better solution.

Thanks guys...I woke up slightly better this morning. The nausea has subsided a bit...but now I have ear pain which might suggest an inner ear thing has come on.


I do save up pills that I don't use. I got really lucky all last fall and maybe had 1 migraine a month. Unfortunately I've now gone through all of those saved up pills.

My husband is taking off work to go to my nuerology appointment with me, partly because he wants to understand more of what I'm going through and partly because he wants to be there to ask the questions he has about why my migraine meds are limited to 6 a month.

He wants me to ask the doc for another MRI or Cat Scan. I told him that these EXPENSIVE test would just show the same thing...I slight abnormality in the size of my ventricles in the brain...He said "Well, that's what's wrong, your ventricles are in your heart!" Oh that husband of mine.

I hadn't thought about the gift card thing...Those visa gift cards would come in handy. The gift givers would never have to know what I used it for!

Hey Brown eyes, after my MRI / cat scan showed large ventricules the Dr. said thats ok you have a big head.

always ask for triptan samples from the Drs. most have them. these can be your spares. I also knew a lady that seldom used

her maxalt she filled the refill for me I paid the co pay. I also faxed my script to a canadian pharmacy { pay out of pocket } then fill

the script local pharmacy. More back up. hope you feel good soon.

What a royal mess! Neck pain is very common with migraines. My neck hurts in about half of my attacks and my daughter's neck almost always hurts either prior to or during an attack.

I don't understand why insurance companies think they are the doctors. Isn't denying you a med your doctor prescribed on the basis that is is not used for that ailment practicing medicine without a license? I have a few words for insurance compaines but I can't say them here.

Alli

I'm sure the insurance companies have "staff" doctors who review denial cases so they can cover their butts.

You just have ask yourself one question. What is the purpose of insurance companies? It's not to help you get what you need. Some companies are better than others, but still, dealing with them is a constant battle.

Chris

I'm sorry for all you're going through. My daughter Anna has Chiari, and she has had several surgeries to no avail. We are about to take her to yet another neurosurgeon (number eight).

Neurosurgeons truly struggle with intracranial pressure and CSF flow diseases. I know scores of people who suffer. It is very sad.

Cheryl

Anna, I would really like to discuss your daughters situation. My Chiari was found in 1997 after months of MRI's, Cat Scans, injections, electrical accupunture..ETC. In November of 1997, the nuerosurgeon said "Well her Chiari doesn't seem bad enough to do surgery at this point but it is your families decision."

I had just turned 14..and I looked at my parents, looked at the nuerosurgeon and said, "Sign me up." My parents tried to stop me but I explained to them that I may only be 14 but I knew my body and knew something was desperately wrong. I was losing feeling in my legs, and arms and could no longer swallow the pills I was being given to treat the condition.

My parents reluctantly agreed, I had a spinal tap that night, and 20 days later had the surgery. They called from the operating room and said that the condition was far worse than they had imagined and it would take an extra hour or so. My cerebellum had been sucked into my spinal column. I remember waking up in ICU and the headache I'd had continuously for 9 months was gone...of course then I felt like I'd had my skull hacked into but the doctors assured me that was a normal feeling because indeed I had.

How old is your daughter?

On another venting note, I recieved a call from my OBGYN today about some lab test done a week or so ago. It came back abnormal and I'll be having a biopsy on my cervix in 2 weeks. Of course, my migraine immediately worsened and I had to take a rescue med and an anti nausea just to get up out of bed to discuss what was taking place with my husband when he got home..I'd appreciate your prayers.

I'd love to discuss Anna's condition with you more as I have done a lot of research over the years to better understand what exactly I had....Feel free to email me on here and Id love to chat with you about it...

Anna's Chiari was missed on four MRI's. I learned about Chiari on this forum. When I compared Anna's earliest MRI to an MRI of a "Chiari brain" on a Chiari website, I saw she had a definite herniation. So we went to some experts and got three neurosurgical consults and offers to decompress her. Did the surgery in 2005, and she was diagnosed with Intracranial Hypertension and shunted for that in 2006. Right now she is "shuntless," after some additional surgeries.

I was wondering if you had Chiari when you mentioned a surgery for neural tube defect. I'm sorry you still suffer head pain and that you are dealing with a new medical concern in your life.

Big hugs!

Cheryl

It was about that many MRI's that they missed mine, it wasn't until they did a gated flow study that they found mine. They removed the top two rings of my vertabrae..the tonsils of my cerabellum (yep it has tonsils) and about a thumbnail size part of my skull.

I hate that I have the migraine now, but its such a different pain from the headache I had before...and it's really good not to have any of the paralysis effects anymore..I had such balance issues I'd be walking down the hallway and just fall flat on my face...Humilating in Middle School believe me. No one could understand why I got car sick going on a 10 minute car ride..

I have a pretty wicked scar though, all the boys in school thought I was tough...it's still cool to lift up my hair and shock people with it.

I am a teacher and one of my students came in and had a new shorter hair cut, I noticed a scar up the back of his head that looked strangly familar...I asked his Mom and she told me he had the Chiari surgery at 5..he was still suffering from the migraines at 7...He'd be in my room holding his head and crying...it absolutely killed me because I knew what he was feeling.

Lots of hugs to you and your girl!

I'm glad that decompression surgery helped you in some way. It made the surgery worthwhile for you. But you're still in pain.

You said your ventricles were abnormally sized. I suppose that means they are larger than normal.

Sometimes decompressed Chiarians have small ventricles. If such patients also have elevated intracranial pressure, that can lead to a diagnosis of Pseudotumor Cerebri, also known as Intracranial Hypertension.

Here is an article about Chiari/PTC:

http://www.ncbi.nlm.nih.gov/pubmed/16357496

Anna had the elevated pressure, and she was shunted for PTC.

She has quite a Chiari scar because she has been decompressed two times, plus she had a third surgery to repair a pseudomeningocele (a spinal fluid leak in the back of her skull).

Take care!

Regarding the insurance allotment, I get way more than the 6 a month. In fact I have plenty of medications so don't have to ever worry about aborting a migraine. My insurance covers a consultation with a pharmacist also who will sit down and tell you exactly what is safe, what you can and cannot mix, etc. Along with the consultation is a reduced co-pay of practically nothing for rest of the year on all drugs pertaining to migraine. A lot is talked about overdoing drugs and rebounds etc. but you don't hear much about the dangers of enduring a migraine. I would rather skip the migraine and take my chances on the drugs. As for the neck, I always have neck pain with migraine.

i always have neck pain with migraine as well, in fact if i am sat somewhere without proper support for my neck or am twisting round to chat to someone or watch tv, i can feel the pain in my neck increase and that in its self can trigger a migraine, i find going to a cranial oestopath evey 6 weeks helps

so sorry to her about your long struggle with migraines and surgery,

it never ceases to amaze me that the more you meet and talk to people you find out that they have health problems themselves and are fighting their own battle in some way, so many people are in pain of some sort, we humans are so strong in one way but are quite vulnerable in others,

Laci, I thought you might be interested in this story on Rosanne Cash and the mention of her Chiari experience:

http://www.dailytribune.com/articles/2010/01/29/entertainment/srv0000007457980.txt

Cheryl

Thanks Cheryl!
I visited Anna's caring bridge website yesterday...Anna and your whole family is in my prayers!

Thank you. Today seems especially hard for friends whose loved ones have these terrible conditions. The CaringBridge Sites, CarePages and FB posts I read are currently heartbreaking. For example:

http://www.caringbridge.com/visit/hopeandholly

Cheryl

So so sorry to hear that you are suffering so much. Cheryl is a great source for information! If it was not for her, who knows how long my daughter's Intracranial Hypertension would have gone undetected!?

My next door neighbors have a son with stage four cancer who is also on Caring Bridge. I keep trying to get Crystal to blog to "get it out". Then people might have a better understanding of what she is dealing with.

The stories are sad, but like this forum, it is a great way to get support!