Any Ideas?...Please help me. :o(

PROBLEM: I have severe headaches, I get them all day every day.   Most of the time they do not end.   I experience a piercing feeling almost as if I am being stabbed in the head.   I have enormous pressure in my head, neck and sometimes down into my shoulders.   These headaches last weeks and sometimes months at a time.   Occasionally I can go a few hours without pain.   When the headaches are severe, about 80-90% of the time, they are disabling.   I cannot move and I experience blindness, dizziness, and nausea.   Often times I dry heave during these headaches.   Sometimes I will pass out for 10-20 seconds at a time.   I believe this is do to my dizziness and the level of pain I am experiencing at the time, which is quite great.   MY SYMPTOMS: Piercing Headaches all day every day Lump on my neck in between my shoulder blades , appears to be inflammation.   I have been told by an orthopedic doctor that this is not related to my headaches. Blindness (with headache) Nausea (with headaches) Passing out (with headaches) Numbness in upper body Gained 35 lbs in less than a year Depression (Before or after headaches) Anxiety   (Before or after headaches) Insomnia Loss of sex drive Very difficult to do ANYTHING physical without getting a headache Pressure along the top of my shoulders and forehead Sleep Apnea-like symptoms, never diagnosed with it (Jerking while I sleep, sometimes enough to wake myself up, fiancé describes it as gymnastics while I sleep) Dizziness   Beginning signs of headache: Eyes become sore / achy type of feeling.  Not related to moving them and it doesn’t matter if they are opened or closed. Whole head hurts – At one time, my whole head will hurt, doesn’t start at one place like normal headaches. Throbbing begins – I can feel my heartbeat in my head. Stabbing – finally I receive a stabbing pain.  Doesn’t seem to be the “action” of stabbing, like repeated stabbing, however that’s the initial feeling.  Occasionally its like being “stabbed” again with pain. Lots of pressure in my neck, shoulders & head, especially behind my forehead.   During headaches: When stabbing begins, she begins to loose her vision, blurry then to blind. Extreme dizziness Left ear deadens – then she hears a high pitch squealing noise/loud ringing. Nausea most likely caused by dizziness. Passes out cold from pain and dizziness / blood pressure drops quite dramatically.     Past Tests and Results : 2 MRIs = Shadow in brain, a second MRI to determine whether or not it is a tumor.   The results were negative. CT = Negative EEG = Negative EKG = Negative Diabetes = Negative Cushing’s Disease = I have every symptom but high blood pressure, but the results were negative 4 day infusion of DHE = made me sleep, but had no long term effects   Current Medications and Treatments Yasmin, once a day, morning, birth control   (Doc changed this medicine because she thought the old medicine could be contributing to headaches.   I do not remember my old medication’s name.) Seroquil, take as needed 25 mg pills, prescribed for my headaches, I take 2 to 4 pills and it puts me to sleep but I still wake up with headaches. Indocin, take as needed, for my headaches, does not help Compazine, take as needed, for my nausea that comes with the headaches Paxil, 30 mg. once a day, morning, for Anxiety and Depression Flexerall, 5 mg, once a day, bedtime, not helping   Treatments and Medication History Zomig dissolvable pill, no response Zomig Nasal sprays, no response Paxil CR, Anxiety and Depression Paxil (regular), CR was not strong enough, so I was bumped up   Medryll Taper, for migraines, but no other response   Imitrex, for migraines, no response Depecote, for migraines, no response Topamax, for migraines, no response Formula 303, natural muscle relaxants, did not work Allegra, allergies   Possibly Helpful History Headaches only started 3 years ago – Headaches started one at a time, first months apart, then suddenly they were every few weeks, then every week, now every day.   The only thing that broke the headache during this time was that Toradol and Fenergan   was administered at the ER. 4 th grade had Shanghai Flu Was diagnosed with “Stingers”, sharp shooting pains up the back of my neck up into my head causing numbness in tongue for seconds and loss of control of head for half a second, if that Had surgery on my left shoulder in 2002 for anterior subluxation I often need someone here with me to help me walk to the bathroom, shower, and even eating   Do you have any ideas?     Little Miss Headache

Welcome Little Miss Headache! You didn't mention what type of doctor you were seeing for your headaches, but from all the information you listed, you are seing the wrong one.  I looked at your list of symptoms, and almost all of them can be directly attributed to the Seroquel.  This medication is for use to control manic depression and schizophrenia.  I could find no information that it has any use for controlling or helping with migraines, but I found a whole list of side effects that could have been taken straight from your posting.  As far as the hump at the base of your neck goes, believe me, that is pure stress you are carrying around with you.  I had one for years.  Nothing was going to make it go away until I lowered my stress level.  I found this out after leaving a high pressure job and a very bad marriage. EUREEKA!  NO MORE HUMP!!!  All gone now.  I use to get neck rubs and massages that were extremely painful, and now nothing is tensed up. It seems that you have been put on some good migraine medications, but the Seroquel would mess with any of them.  Could also be you were not on the right dosage for you or you didn't stay on them long enough. My suggestion would be to see another doctor.  Whoever ordered all those expensive tests doesn't seem to understand migraines, especially when it comes to medication.  If I could make a suggestion, try the Topamax again, slowly increasing the dosage.  If you change it too quick, you tend to get more of the side effects.  Topamax works best used with an antidepressant, like Paxil, but I personally use Effexor XR.  I find that it is more action oriented.  And, please, don't give up on the Klonopin.  I have used it for years and it works really well at controlling my anxiety.  Perhaps, though, maybe you could take half in the morning and half at night.  You might have better results that way. I know you feel like you are in a really bad place right now without any ray of light, but I think if you can find another doctor, and do some homework before your appointment, you are bound to get some much need relief. Jest my opinion.  Let us know how it goes. Leigh Ann

Hello Littlemissheadache--

I had Cushings Disease. I know that it is VERY RARE. It was estimated that I had it for about 8 years before I was finally diagnosed. (My offending tumor was successfully removed in 1997.)

Please tell me what test or tests were done to see if you had it. 

What kind of doctor (What specialty) first suspected Cushings? Were you seen by an endocrinologist?

I, too, take both Topamax and Effexor XR. I also take Elavil aka Amitriptyline. 

The others are giving you good advice about your migraines. I'm curious about the Cushings.

~~Pegasis

Hello, Littlemissheadache,

I am not ignoring you. I'm trying to find out how you and I can communicate about Cushings without using the migraine forum. Be patient. I WILL be in touch--SOON.

~~Pegasis

Info has been posted...

Pegasis...email me, please. Would like to speak with you.

Sara