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I have been diagnosed with Transformed Migraine. It started as untreated menstrual migraines that I had for about 6 years and thought was an old condition I had called Pseudotumor Cerebri. I have had a solid, non stop headache for over 9 months. I have only been seeing a neurologist for 2 months as I started treatment for the Pseudotumor first.
I have been off over the counter pain medications for two months. I am on Topamax, clonazepam, nortriptyline, and Flexaril. I’ve tried Imitrex, Verapamil, Steroids, and Steroid blocker shots, and nothing relieves this daily agonizing pain. This daily non stop head ache is accompanied by migraine attacks every 3 to 5 days. No auras. No triggers. Light and sound sensitive, with nausea.
Is there a way to stop the daily headache so that I can go about treating the Migraines with the Topamax and then test drive the different migraines pain pills? It’s the constant daily pain that is the reason for the nortriptyline. My Doctor told me that my cat scan proved that my life is not in danger and I just need to give it some time. Is that the only answer? Keep suffering and pop more pills? Donna.
Have you actually been diagnosed with pseudotumor cerebri (PTC)? What is your treatment for it? Sometimes, medications alone cannot get it under control. It’s common with PTC for a lumbar puncture to be performed to confirm the diagnosis by measuring the cerebrospinal fluid pressure. If it is too high, fluid is drawn off during the lumbar puncture to put the pressure into the normal range. Then, medication is prescribed to keep the fluid pressure down.
Migraine attacks do not occur without triggers. You may not know what the triggers are, but there are triggers. If the PTC isn’t well controlled, that can be one possible trigger.
Sleep issues can significantly contribute to transformed Migraine. Too much sleep, too little sleep, disrupted sleep, irregular sleep schedule, poor quality sleep — all are problematic, can contribute to transformed Migraine and can be Migraine triggers. For more information on this, see Transformed Migraine Related To Sleep Problems.
How frequently are you taking pain medications and Migraine abortive medications? If taken too frequently, they can make matters worse by causing medication overuse headache (MOH), aka rebound. Research has shown MOH to be a factor in 80% of transformed Migraine cases. Take a look at Medication Overuse Headache - When the Remedy Backfires and Stopping Medication Overuse Can Halt Transformed Migraine.
It is essential that you reduce the number of Migraines you’re having. There’s growing evidence that Migraine is a progressive brain disease. A recent study showed that Migraines can cause brain damage, and that people with three or more Migraines a month are more susceptible to this damage. For more information, see Is Migraine a Progressive Brain Disease? and Yes, Migraines Can Cause Brain Damage.
If you and your neurologist make progress, that’s great; but if you don’t, keep in mind that neurologists aren’t necessarily Migraine specialists. If you need help locating a Migraine and headache specialist, there’s a link below to our listing of patient recommended specialists.
John Claude Krusz and Teri Robert
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Dr. Krusz is a recognized expert in the fields of headache and Migraine treatment and pain treatment. Each week, he and Lead Expert Teri Robert, team up to answer your questions about headaches and Migraines. You can read more about Dr. Krusz or more about Teri Robert.
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