Status Migrainous since 3/11

[Dante34]

I have had headaches since I was in junior high. I have always managed them. I always had strange symptoms. I used to "faint". I would just slowly without being able to stop drop to the ground whole my arms and legs flopped around.  Then in Junior high I got headaches and one day one of my eyes dialated for some undiagnosed reason. Then my senior year I started seeing stars and patterns and I thought I was going to faint at my desk, I got my worst headache ever that night. My headaches increased in frequency from there. Then we found I had Arnold Chiari I in my C-1 and I had Occipital Neuralgia. We tried the Beta Blockers, the triptans, Amitriptaline, Antidepressants, Bio Feedback, Nerve Blocks, Cryogenic Therapy , celebrex, and the narcotics. Then I did the Chiari decompression, the laminectomy and a Occipital Neurectomy on the left and right. For two years I was pretty pain free, then for two more I was starting to get a bad migraine one to two a year, still pretty great.
Then 2008. I started getting daily headaches and one to two bad monthly migraines the first status migrainous was in November 3 weeks. Then starting March 11 I got this one and it has yet to let up. We have tried the following: (I was already taking 200 mg Tpamax, .88 Levoxyl for Hypothyroid, 3 X 37.5 Effexor, and Trazadone for sleep)
3/13 3 shots of Dilaudid , 1 Toradol and 2 Reglan,3/15 One indusion of DHE and 1 shot of Ativan,  3/18 2 Shots Demerol, Started Fioricet and Percocet 1 daily,1 Toradol and 1 Reglan, Started Prednisone, Started Flexaril 1 daily, 3/20 1 Shot of Benadryl, 1 Shot of Reglan, 1 Shot of Ativan, 1 Infusion of Depecon, Started Depakote 500mg daily. I was told to go on 2 weeks bed rest and no pain meds of any kind to be taken. When I was in pain that I could not handle and the Neuro at Virginia Mason Seattle would try nothing else, I got an Appt with Dr Aurora at Swedish Pain and Headache clinic. I then weaned off the Depakote and went on to 1500 mg of Keppra and 100 Mg of Seraquel and went off of the Trazadone as Dr. Aurora said Trazadone causes headaches. She also said try EMDR therapy. We did 2 Keppra infusions and it brought my headache twice down from a 10 to a 6. Then I still went back up to a 10 and I was told to go to the ER by the Swedish clinic. I went to the Swedish ER. They gave me a Keppra infusion, Benadryl, and Toradol. I was told that they do not treat headaches with Narcotics and I was made to feel like a drug seeker. It did not make my headache better. Then I needed to go to the ER again and I went to Harrison Bremerton so I could get a MRI. They did Keppra, Benadryl, Toradol, then Dilaudid. I felt a bit better, I got a MRI w and w/o contrast. All was normal. I was down to a 4 for three days. Then I was back up to a 10 again and I went to the ER at Harrison Silverdale. They gave me Ativan,Dilaudid, Toradol, Reglan, and I was good for four days. I have been in the ER 4 more times. Now Swedish has made Harrison fill out paperwork and has made them put down no Narcotics for me. Only Keppra.I had a Spinal Tap and my intracranial pressure was raised slightly to 25. I am dizzy. I have low blood pressure, 92 over 56. My head feels like it is going to explode daily. I asked to be Hospitalized to manage the medications till they get it right and the Headache clinic said they do not do that. Then the last ER visit, two days ago they gave me 2 grams of Keppra and I started having uncontrollable jaw movement. its going side to side. I feel like I am going to fall apart...... Please help.

[hava]

Do this very natural exercise and come back to report how you feel. Then I will suggest more things you can do at home.
Concentrate fully on the breathing. Avoid cold drinks and drink warm water.

Build up your timing gradually.If you feel tired or dizzy, stop and resume after 1 minute.

Anulom Vilom -  Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 20 to 30  minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep breaths into the lungs.

[Dante34]

Hi, thanks for your response. I got the lumbar puncture the other day.
This cannot be Pseudo Tumor Cerebri because I have low blood pressure not high. I am very dizzy because of that. Also I am craving sugar like crazy, very out of character. I live on PB&J and Cereal.
I am thinking this is a neuralgia or maybe the Occipital Nerves are growing back?
Maybe I am having a bad reaction to the new drugs?
All I know is they are considering no other alternative diagnosis.

Thanks,

Janell