15 years of migraines -weird stuff is now happening- anybody have this?

Hi everyone, I'm new to the board.....I'm once again on a 6 day migraine.....it's exhausting!

My migraines started at 28 years of age after a car accident. It took from 1991 to 2005 to even have a doctor listen to my horrific migraine suffering. Eventually my migraines were most of the month approx., 22 days out of 30 I had no quality of life and well it all just seemed hopeless to me.

In March of 2005 my migraine caused my pupil to be fixed and fully dilated. I couldn't see very well out of that eye (right eye) and the lights from lamps and regular highway lights looked like colour lightening rods...was so weird! I drove myself to the hospital (I live in a very rural area no doctors or hospitals) Anyways, the ER doctor from another small town said to me, "you better drive to the city if you want to save your brain." Being completely stunned by what he said I agreed for me to drive the 2 hours to the city by myself.

After getting to the city hospital the took one look at me and figured I was having a stroke. Inside of myself that diagnosis didn't feel quite right. I had a MRI and a CAT and had numerous ER doctors and students check me out some even said, Oh you nodoubt have a brain tumor. Talk about flinging out diagnosis on the spot!

A neurologist over heard the buzz about me and my weird fixed and dilated pupil issue and she decided to come and check me out for herself. It turned out I was having what they called a "silent migraine". Which I found to be odd because I had a severe migraine a few days before by eye weirded out. So to me there was nothing silent about it. My pupil (right eye) was like that for approx., 10 hours.

The neurologist decided to take me on as her patient and since 2005 I've tried all sorts of migraine medications such as; Topamax, Maxalt, Replax(<<<think I spelled that wrong), Zomig, Axert I have a very sensitive system and had all sorts of adverse side affects. The Replax<<<I can't remember how to spell it, anways, I ONLY took this once and the side affects were so bad for me I ended up calling an ambulance.

Side Affects were:
(1)... Within 35 mins of taking the medication I had a strange sensation at the very base of my spine ummmm much like a coolness and then as if my spinal fluid was bubbling eventually this carried on all the way up to my neck followed by intervals of an intense coolness.
(2)... Followed by feeling intensely sick to my stomach.
(3)... Suddenly feeling extremely exhausted
(4)... Feeling confused and having a heavy chest feeling.
(5)... I couldn't get my words out
(6)... Had difficulty remembering how to dial a phone
(7)... on and off trembling arms, hands and legs
(8)... Upon trying to stand up I almost collapsed
(9)... A sudden taste of metal then it was gone and followed by,
(10)... The WEIRDEST sensation of ALL was that I kept having this INTENSE bursts of freezing cold run up my
spine and flood my head then face, chest and then extremities. This happened in intervals.
(11)... Every few seconds all this was followed by an adrenaline rush.

ALL of this went from beginning of list to end in a constant cycle that lasted for just over an hour. Sadly, once I figured out how to use the phone and call 911 .......The ambulance took 37 minutes to get to me it all STOPPED. And everything went back to normal. YES the migraine ended but, my god I was terrified with the process of this medication. The EMT checked my vitals and all was normal, infact the even joked about my blood pressure saying they wished theirs was as good as mine. So yeah this was such a scary thing and I still don't really understand what happened that day.

In September of 2006 once again I had a migraine that was associated with my pupil being fixed and fully dilated. It lasted for about 6 hours. And then migraine went away.

My neurologist was contacted and we decided it was best for me to never again take that drug. In fact my neuro doctor felt it was best for me to never take any more migraine medication.

I now have Botox treatments every 3 months. YES this has helped me big time ... instead of having migrains for 20 or so days out of each and every month I'm now down to 4 or 9 days each month.

What I'm concerned with is:

With the last few migraines I've had the migraine pain (which is quite intense which is normal for me) but, the odd thing is....it's followed by suddenly feeling weak, exhausted and shaky. I get a heavy feeling in my chest and jolts of adrenaline that comes in intervals of every few minutes. Now this happened on Friday and lasted for approx 2 hours and then the adrenaline rushes stopped. I called my neurologist and left 3 messages sadly, she never got back to me. Today I still have a migraine I just wish there was something to take the edge off of it.

Question: Is there anyone in this group that has experienced anything like this during the beginning faze of a migraine??? I'm wondering IF my migraine gets so severe that my brain miss-fires and is sending so many strange messages to the rest of my body. Especially my autonomic nervous system thus, creating havoc.

My neurologist says she can't give me anything for it.....no pain meds....so I get zip... nadda, nothing other than ASA. Her concern is I might get addicted to pain meds .... so yeah I get to suffer with it. How can I get my neurologist to actually help me with the pain that is associated with my migraines?

Since my Botox injections started in March 2007 I nolonger get the facial twitches and swollen eye lid. But, the pain hasn't changed. The amount of migraines in each month has......that god for that.

I have been diagnosed with cluster migraines and Occipital Neuralgia (<<due to the car accident)

Sometimes I feel like I"m going insane with the long durations of the migraine pain. I've lived so long with this pain that I honestly believe that if the average person had this pain for 1 day they would flip out completely.

On a scale of 1 - 10 for pain........I am always in the 10 range for the past 15 or so years. Really, what choice to I have?

My family also has a history of migraines on both sides........I'm wondering if it's heredity.

Anyways, I do hope somebody here has some information or knows of somebody that has had a similar experience with strange body sensations ......I find it hard to believe I'm the only one. Which is why I'm now seeking out other migraine sufferers.

Thank you for this message board. I look forward to talking with you all.

By 4 now
Odessa

Odessa, I'm so sorry you've had to go through so much pain!  I can't really relate to much of your experience, because I've never had a migraine.  But you mentioned occipital neuralgia - I experienced that for 4 months before I figured out what it was (thanks to this website!) and a man with ON said the only thing that helped him was Cymbalta.  I told my dr. and she prescribed that for me last March, and I've been improving ever since.  Has your dr. ever specifically tried to get to the root of the occipital neuralgia?  Just curious if that would help any.

Hopefully someone with more knowledge than me will respond to you - don't give up, and don't quit posting!!!

Nancy

" My suggestion to you is to find a neurologist that specializes in headaches. If you are already seeing one, find another. No doctor should allow their patient to be in pain like you are only because they fear you will become addicted. I read on the chronic pain board all the time and I love what some of them have to say about pain meds. You are not addicted to pain meds if you have pain and need them - you might be dependent on them to control your pain but only someone who takes them who doesn't have pain is "addicted". So....find another doctor quickly."

I agree with this........Fear of addiction as a reason for not prescribing is ridiculous. Doctors are there to help monitor such things--they can prescribe certain amounts, dosages, etc.

Could your adrenaline rushes be anxiety attacks? I know it's common for migraineurs to feel rather anxious at times about when the next one will hit, when it will go away, that sort of thing. I tend to do that, though, I don't get full blown attacks. When I get a really bad one, I get nervous. I think from fear or panic or something.

Good luck, Vicki