Brain (Cerebral) Aneurysm Community
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Avatar universal

post-craniotomy headaches

My wife, 47, had a craniotomy & clipping for an unruptured aneurysm in 2009.  This was a single PCOM aneurysm, about 13 mm in diameter.  The neurosurgeon at the University of Michigan (B. Gregory Thompson) successfully clipped the aneurysm.

However, she has been living with severe headaches almost every day since.  She sees a Neurologist / pain specialist, who currently prescribes Lamictal 400mg and Topamax 100mg daily, and she also takes Paxil daily (she is depressed because of these daily headaches).  She also takes Indocin and Phrenilin PRN, and several other OTC drugs.  

None of this seems to be working, and I'm actually starting to think the medications (Lamictal especially) may be causing more harm than good.

I know this is complex, but does anyone (with some expertise) have any advice on how to relieve these headaches?

11 Responses
Avatar universal
Finding expertise on this condition may be very difficult.  My wife had the same type of surgery for an ACOM ruptured aneurysm.  It was clipped in 1994 using older technology.  She has had the headache/migraine syndrome beginning six months post surgery.  Last year we finally found the culprit contributing to her nearly daily headaches/migraines.

I have coined a term for the this condition which is suffered by nearly 65% of clipping survivors.  It is called Electro-Magnetic Migraine. You will not find it on a Google search independent of my coinage.  We have proved beyond a reasonable doubt that electro-magnetic fields are behind the headaches.  Without going into great detail, common everyday devices such as computer screens, digital TV converters, printers and copiers, as well as compact flourscent lights can initiate the headache/migraine sequence.  A far stronger contributor are electric power transformers and substations.

I realize this sounds all far fetched, but the laws of physics are at play within this syndrome.  At the urging of my wife's Neurologist, she and I will be meeting a well respected headache center team this month to discuss our findings (by the way, I earned a Master of Science in Engineering and Applied Science so I am very familar with the physics I spoke of above).  This is a very complex syndrome and there are no easy answers or medication to resolve it.  It will require further medical studies that I am hoping the headache center will agree to undertake, it's a start anyway.

If you are interested in learning more about this let me know via this forum.  You can also search Eddie1994 and look over my postings on this subject.  Let me know if you are interested.

My husband went in for a 3 hr embolization treatment of an AVM that was to be an overnight. It turned in to a 4 1/2 hr procedure that caused a bleed and 12 day hospital nightmare with ongoing excruciating, daily headaches.
This was on Oct. 4th and we can not get in for pain management till January!
I truly don’t know how he can take this pain that long.
Any help at managing this pain would be much appreciated!
Avatar universal
Hello, I believe I too suffer from these electro magnetic headaches. I notice them come on while I am on my I phone mainly. My husband thinks I'm crazy but if I am reading an article or on it for more than a few minutes, I can feel it coming on and then I become nauseas. I would love to know of anything you find out. Thanks
Avatar universal
I'm not familar with the construction of the I phones so I can't tell you whether they emit what are called electromagnetic radiation.  After reviewing the specs, it does operate like a laptop such as having  a microprocessor so it not out of the realm of possibility.  You didn't indicate if you had clipping surgery which would make this syndrome much more likely. Keep in mind that EMR can be absorbed and pass through most all substances quite easily.  Our brain is a highly electrically charged organ and medicine has very little data about it becoming unbalanced in electrical environments.  Case in point is the female broadcaster who recently suffered a migraine attack while on the air.  She emitted pure gibberish.  Dr's later explained it was an attack of acute electrical imbalance.
Avatar universal
Based on a new report released by medical researchers today (02-22-2011) apparently electromagnetic radiation from cell phone antennas do have an effect on brain tissue.  Look for the reports online.
Avatar universal
Thank you so much for all your research on this subject. I had an aneurysm clipped 6 years ago and over the past few years the headaches are ongoing. I continue to work full time - which does not help, as I am both on the phone and computer all day.  My headaches are considerably worse in the mornings - not sure how relevant that is.  I will continue to read your postings.
Avatar universal
Hi Annie,

At the time I wrote the earlier posts, I was not able to fully account as to why later clipped or coiled patients were suffering  headaches as well.  I was stumped.  In the last few months I have been able to make more in roads in this understanding.  While I have a lot more work to do, I have discovered that the purity of the metals used in earlier surgeries were not tested for purity (meaning stainless steel sutures may not have met the designation of being for example 316ML stainless but some other formulation) or for interactions with brain tissue.  I thank you for reading my posts and I intend to continue posting here as long as I find relevant questions that I can answer.

Also, FYI, you might want to consider investigating EEG Neurofeedback offered by Acorn as a possible treatment for headaches.  My wife will be trying it very soon and I am intrigued by this technology.  In a nut shell, the Neurofeedback helps an individual to train the brain to ignore incoming trigger stimuli and helps the brain rebalance its electric harmony.  I know it sounds weird but when there is a electric mismatch it is called electrical impedance mismatch.  It can also occur in other forces such as magnetics, thermal and mechanical for instances.  There is a reasonable explanation for these headaches and I am determined to find out why because it takes so much life away from my wife and others.
Avatar universal
I don't know if you're still at this email address, but I am also being treated the UofM and have gotten significant relief from a whole bunch of treatments and medications for my migraines that you don't make mention of. I can fill you in on what doctors I use at UofM as well as what the treatments are.  Let me know.
Avatar universal
Don't know if you or any others are still watching this list.  I had surgery twice in 1991.  Two aneurysms clipped, first one had ruptured.  I have had head pain ever since.  It is no migraine, I had migraine before that and these are different, no aura, no nausea.  My doctor gives me pain medications which sometimes get rid of it for a short while but I would love to see a cure.  I am on my laptop a lot, for something to do.  If it is part of my problem that would really bother me.
Avatar universal
Hi Sandbee,

Let me direct you to the Aneurysm section under the A's in Medhelp.  I think the discussion I am having with Schatzebar (should be the first post in that section) will help give you some of the information you are seeking.  After you read through it please share your comments back here.  Thanks.
Avatar universal
My mom is 67. She had ruptured brain aneurysm is Nov. 2010. She has 9 coils and a VP shunt. She too has suffered from debilitating headaches just about daily. They have never gone away 100%. It is the saddest thing to see a loved one to live thru this just to have no quality of life what so ever. We have tried many many doctors, clinics, specialist, acupuncture, botox injections,string pain meds, and nothing helps. What do you say to someone who tells you they just can't stand the pain anymore :(
Avatar universal

We've been there and know her pain.  Rather then go into a long winded explanation about why this happens (and it's not something that is taught in any medical school) let me direct you to a treatment technology that has had an amazing effect on my wife's daily and constant migraines.  This treatment is called EEG Neurofeedback.  It is available only from certified and postgraduate professionals, usually PhD Psychologist.  If you are interested in exploring this treatment I will provide you with information on how to find a provider.

In short, your Mom has had a foreign metal substance inserted within her brain.  Most people don't know this or misunderstand the operation of the brain and its central nervous system, but it is a micro-micro electrical system, and I am not kidding.  Most folks think a pill (chemical) is going to solve their pain problem but it only temporarily mask pain.  The coils have the effect of creating a short circuit like event within the brain.  So just like short in a computer system, circuits become haywire.  Unfortunately for people this results in pain.  This is the short reason.  I do hope you will consider EEG Neurofeedback for her as it cannot hurt her.  From my wife's experience this treatment has been nothing short of a miracle.  Write back if you want more information.
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