Sidenote - I know how people can hate opening a thread to find an annoyingly long post, they get boring, hard to read, etc... I beg of you Veterans to look at my kids faces, I am a stay at home mom trying to homeschool and my life is being ripped to shreds. I am desperate to find the right path here..!!!!!

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greetings from freezing northern minnesota.

I am 28, happily married and have a son 5 and daughter 3 1/2. I have an enormous list of medical problems, drug allergies, surgery, failed surgeries etc etc etc but last June we moved from Minneapolis (big loud booming city) to northern minnesota, a sleepy town of barely 10,000 where people literally leave their keys in the ignition and doors unlocked. I never had a migraine in the big city....

Within 3 wks of moving here I had this THING happen, no idea what at the time, thought it was a stroke or aneurysm perhaps, then thought maybe my eyeball was going to either explode or fall out of my head. We tried to make it to the ER but I fell from seat to the pavement and passed out. Ambulance came quickly and noted the pupil on the pain side was "not right"....  ER did fluids, zofran, and morphine shots and IV infusions. Eventually I was what the charge nurse called "maxed out" on how much morphine they could safely give me and switched me to some type of sedative to basically make me sleep it off, since I was still nearly delirious with pain.

I found a neurologist shortly there after and worked w/ him for about 3mos. Eventually he suggested a mri and/or CT scan however, he refused to order them himself. He did order me to go get an eye exam, but he then would NOT allow me to bring him the "all clear" report or sign a release for him to get the mri/CT scan results. He said he wasn't interested, my primary could do all that. He also refused to discuss pain meds, oxygen, etc etc... said whenever the pain got to a 10, head to the ER.  I dumped him and replaced him as quickly as possible.

New neurologist has given me zofran dissolvable (since my migraines are causing such intense and traumatic vomiting) and imitrex.... but the ER convinced me to consider myself allergic to the imitrex since they cause panic worthy chest pain lasting for hours. also, any time I complain to him about frequency, pain, anxiety, etc he simply tries to shut me up by increasing my topamax more and more and more, regardless of the fact that my hands are cold, tingly, & numb nearly every waking minute.  He's continuing to prescribe the Imitrex and says that I should take it when the benefits out weigh the risks for me.

Soooo flash forward to this week. I ended up in the ER, again, and this time I was kept overnight for observation and pain management. I took 2 imitrex within a 12 hour time frame (allowed) and could barely choke down enough air to keep myself standing. Once in the ER they put a form in front of me to sign and I saw the words on the paper turn black, and I woke up on a gurney being yelled at and having my clothes taken off by a gang of doctors.  I am really not sure how much longer I can play this game, this life. I cannot plan anything, I have to coddle/baby my left eye because if I move it too much or too dramatically I can bring on a migraine.  I pop zofran like m&m's to keep food & pills down because if I don't have a migraine or am recovering from one, I am having terrible anxiety waiting for one to begin.

Absolutely any/all comments, advice, thoughts, etc are so, so SO welcomed.   My only specific question  is, should I seek out a new neurologist? My 3rd in 7mos? I worry I'll come off as difficult or strange.
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Hi Jen, cute kids, try to be brief for ya as you stated you get bored with long posts, you are not alone as there are over 7,000 members on this site who also feel your pain and yes you do need help from a professional and no you are not strange for needing to dump this chump and get yourself a qualified neuro and if it means you leave your sleepy little town to visit Mpls to meet with a doctor who is familiar with Ch's, then you do it...for yourself, your kids, and your husband. 

Read as much as you can, start with taking the cluster quiz, cluster survey and read about preventatives and abortives, pain free wishes to ya, Gregg in Las Vegas

no, *I* don't get bored with long posts!!!! lol... I have nothing better to do, I barely sleep anymore.   I was trying to apologize for mine being so long & boring and pleading with u guys to actually read thru it! hehe.   

thanks so much! :)

1. take the cluster quiz, see link to your left.

2. identify your symptoms & triggers,

3. document your pain----times they occur, for how long, where you feel pain, etc

4. Read as much as you can from this site AND print helpful info to bring to doctor.  ideally you will go to a neurologist.

5.  Understand recommended Preventative meds & Abortive meds.

6.  RedBull or other energy drink containing 1,000 mg of Taurine with caffiene...Ice packs/bag of frozen vegetables...have your spouse read this info also so he understands what you are going through....melatonin to sleep....firm massage to temples and neck...etc., plenty of helpful tips on this site.

7.  Not in your best interest to smoke, drink alcohol nor take pain pills including over the counter meds such as tylenol, etc

8. Read the o2 page

We are here for you, you are not alone!

With such a very complex history I don't see how any advice we could give would be either useful or responsible. Clearly, you need the high level skills of several docs but I'd suggest a headache specialist who could coordinate the work of whatever # of docs become involved in your care.
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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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box.  Call 1-800-643-5552; 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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.

I'm with Bob on this one.  You need to find the right Doc.  Clearly you haven't found him/her yet.

Know that there are answers out there for you.  Though they may take a while to find. 

Good luck and keep us posted...

-Dennis-

Jen you have been dealt one very rotten hand, so sorry to hear about your extreme trials. Hang in there though, there's still much hope for you fighting this beast back into submission, IMO.

The term "headache specialist" is one to really latch onto here I think.

There is just story after story after story here of very bad experiences with run of the mill, commonly VERY IGNORANT, often arrogant neurologists who aren't headache specialists.

They routinely prescribe wrong and dumb things like imitrex pill form instead of injectible.

Which form have you been prescribed? Operating on the assumption that imitrex is an OK drug for you, a very important thing for you to know about is the "imitrex tip" found in the side bar on the left of this page (it doesn't actually show up for everyone, here's a link just in case: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE)

This imitrex tip will potentially allow you, with an imitrex injection prescription,  to abort attacks SIX(!) times a day at the same cumulative dose level as you are now using/risking with 2 a day. Can bring much more relief, reduce your risk, and cost a heckuva lot less that way.  :)

If you're responding to imitrex, well heck why not try some hi flow/non rebreather O2 a la the oxygen info link (also to the left) while waiting for that headache specialist diagnosis/treatment plan?  A very good non toxic and effective way to abort attacks for CH sufferers at least.

The same O2 that medical supply places use can be procured from welding supply places without a prescription, in a pinch.

The fact that you're smart enough to search out info from other sufferers,and are ready to take that beast by the horns and give it a good knock out kick or two bodes well for you, just try to hang in there, you'll make it through.  :)

[Edit]: I'm no medical professional, and although the injections and O2 that I have brought up here are routinely used and recommended CH treatments on this board, I guess you'll have to take them with a grain of salt, since you're still awaiting a proper diagnosis.

Hi Jen, hope you had the opportunity to read a bit. 
Pain Free Wishes to ya.   8-)

Gregg in Las Vegas