He is now 49 and disabled due to them. He has had mini strokes, night seizures, loss of memory and continues to get worse. we have been to 20 plus neurologist all over North Carolina including 2 years at Duke. They have had him on all meds known to mankind, tried Botox Injections, Stimulators, Nerve Blocks, Sinus Surgery(twice), Acupuncture, chiropractor, Medical Cocaine treatment, Bite Guards, Dental Work...the list goes on. He has no life because of the headaches. He can not remember the last time he was without a headache. I had one doctor to tell me he had an infection on his brain and it was slowly deterioating his brain. He has has numerous CT's, MRI's which tells us he has white clusters on his brain that continue to get larger. the doctor's say it is normal with Stoke and Miagraine patients. If anyone has any advice or where he may be able to get relief, i would greatly appreciate it.
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Wow. I'm so sorry your husband is going through all of this.
You listed many doctors, but I didn't see an actual Migraine and headache specialist among them. It's important to note that neurologists aren't necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.
I do know how difficult it is to keep trying medications, looking for one (or a combination of them) that works. Been there, done that, BURNED the tee shirt. But the good news is that there are so many medications that can be used for Migraine and headache prevention that it's literally impossible. He may have tried what his doctors knew about, but it would take over 25 years to give all of them a fair trial. You can find a list of potential Migraine and headache preventives in Migraine preventive medications - too many options to give up!
The white "clusters" on his brain may be white matter lesions. They can be found in imaging studies done on some Migraineurs. At this point, nobody has discovered that they cause any symptoms, but it's thought that they're a sign of Migraine being a progressive disease. You can read more about that in Is Migraine a Progressive Brain Disease?
One last thing, in case nobody has mentioned this to your husband - How many days a week does he take something to relieve his Migraines and headaches? Taking Migraine abortive meds such as the triptans or ergotamines or any kind of pain medication -- prescription or over-the-counter -- more than two or three days a week can make matters worse by causing medication overuse headache (MOH), aka rebound. See Medication Overuse Headache - When the Remedy Backfires for more information on this.
I really hope some of this information is helpful to you. Please keep me posted?
I have suffered from episodic cluster headaches since I was a teenager. When they do come, they usually last about 5 to 8 weeks and it's not a series of headaches but one prolonged headache. I know how severe the pain is and how hard it is to get people to understand. The only thing that has worked for me is summatriptan succinate(imitrex)injections. They come in 6mg doses but I have
found that if you take the syringe out and plunge it with a q-tip, half the dose will relieve the pain. For me, the relief lasts from 4 to 6 hours before I have to do it again. Believe me, I know what he's going through. I can't imagine having these year round. Mine will go away after a month or two and not return for maybe a 6 months to a year. He has my sympathy. Good luck. I hope it works for him.
Hello and welcome! The top experts say that one long headache that lasts that long is not a cluster headache. Have you seen a Migraine and headache specialist?