Hi everyone! My name is Jennette, I'm a wife and mom to 3 beautiful babies ages 4,3, and almost 2. I am a teller at a local credit union, and am soon starting my promotion as a Financial Service Rep. Even before I had kids I had always had debilitating migranes. The kind you had to draw the shades and sleep off... well much to my dissmay and confusion were these new even worse excrutiating pains that really surfaced in May 2010. I had been pregnant and had "headaches" that would make me cry, told my OB about them and she had said well if the 2 excedrine you're taking don't touch the headache you should see someone about them. But during the pregnancies I was having similar problems as to what I have now only subdued. Now they are out in full force. I haven't had attacks at night they usually occur 8:30am 12:00pm 3:00-3:30pm and as late as 5:00pm everyday for a week long. Right now I'm on my way out of a cycle. Just this week I have had attacks at work 2 times, while driving, and at a reception.

My eyes are a big indicator for my attacks. My right eye gets smaller and smaller, starts twitching uncontrollably, and then comes what feels like tiny ninja's stabbing me in the eye. What really gets me and I have yet to find out why this is happening to me, but if it goes on long enough I will get really nauseas, and further go into convulsions. I was taken to the ER twice and they threw pseudoseizures at me asking me if I was prone to having panic attacks!!!! So needless to say after being pinched in the arm and getting a bruise from it (I don't bruise easily) I went to my primary to get his take on all this. He took bloodwork, and wanted me to follow up with the neuro from the ER. Bloodwork came back and I also have hypoglycemia, high insulin and low carbon dioxide. So I'm not sure if that could be a trigger along with photosensitivity. I have had MRI's, and CAT scans to rule out epilepsy. Enter September 2010 I have another Cluster and have round of conv. with these. I go to his office with my sunglasses on, my eye is twitching like crazy, I don't eat, and just hope that I don't go into convul. before he sees me. He enters, looks at me, asks my husband "is this what happens before the seizures?" He says "yes", and I get a shot. He then tells me, " You have cluster headaches. Your eye is droopy, twitchy, you can't even look at the light, and the shot I just gave you (which was imitrex) just stopped the twitching". I just went back to see him again because of the convulsions, now my doc is thinking the CH is triggering the convulsion or what could be seizure. I don't know what to believe anymore. So he's sending me to another neuro because mine still has me diagnosed with Basilar Migraines. Which could be but not what's going on right now...

At work people look at me funny when I say... "just punch my other eye and make it even, just do it I won't tell HR", or they can't watch as I am roughly massaging my eyebrow and around my eye. I'll rock holding my head, and have though that hitting my head would make it feel better.

So now I'm currently taking:
Maxalt MLT 10mg
topiramate 75mg (which the neuro is dragging her feet upping)
Oh and Indomethacin 50mg (the pharmacist said this is an anti-inflammatory) so I have to take this if I start even feeling a twinge of a headache.

Nice to meet you all!!! It's nice to see a group of people who are supportive of something so PAINFUL!

Jennette

What Mike said. He's really dishing out the the most helpful info in a nicely condensed way these days. 

I do think that there is pretty much a consensus around here that seeing an actual headache specialist is by far your best bet for getting the most accurate diagnosis.

My primary doc was the one to make the diagnosis during an attack as my neuro took what my regular migraines are as the diganosis for what has been going on currently, and discounting what has been going on. She has also been making appointments further and further apart, and is even harder to get ahold of when these happen and believe me I did call. So my primary is sending me to his Neuro (the other is one the ER had me go to). He said he would talk to the Neuro and sent me home with about half my chart for the past 3 years, including when I was pregnant and having "spells".

I get the topamax and just noticed a decrease in frequency the last time she increased the dosage. I've had 3 or 4 full cycles (about a week long) since May with many days of recurrances that happen about every 2 weeks. I had always chalked this up to my hypo since they happen around meal times.
Imitrex causes some really bad side effects for me, I get rebound headaches, and right after taking it and it starts to take effect it leaves me with a drunken sick feeling that just won't go away for hours, and a real bad tightness in my chest. He also gave me pill form which took way too long. By the time the pill would work I would be coming out of it.

Thanks for the info Mike. I'm curious what this neuro is going to say when I go to him, since I probably won't have an attack in his office for him to be able to quickly go off of. Almost like bringing the car to the mechanic. I am terrible at explaining things to doctors. That's what is so great about my primary, I don't have to explain my family history or my history I've been going to him since I was 12 and my whole family goes to him. So I hope the info my primary is sending me with will help.

Thanks!

With any condition, the more doc who become involved in your care, the greater the chance that no one is really in charge, coordinating the care plan. AND each one is making their own guess on the nature and care of the problem.

Because of the complexity of treating headache, far too many docs lack the training/experience/skill. Which is to say, headache specialist--not a general neurologist or GP.
====
LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
======

And see the PDF file, below.

Did you mention if you had tried using O2? Sorry if I missed that, but it's the best abortive for so many. lance

Jennette Welcome to the Club where membership is not voluntary and the dues are taken out of your hide on a regular basis by the beast himself.

Sorry you had to join us, but glad you found us.

Read all you can here as there is much that may help you and your doc with your treatment.

Please do check out the oxygen info link to the left.

Wishing you many PF days and nights!
Ging...