Wednesday, July 30, 2014
Friday, July 23, 2010 danni, Community Member, asks

Q: I have "Complex Migraines" and Partial Complex Epilepsy (Left temporal lobe).

I cannot take the newest type (triptans, etc...)of medications available due to personal and maternal family history of heart disease.  (I was hospitalized specifically for the migraines and treatment - a 3 day program).  I was given Topamax and it initally stopped the migraines, but about a month after starting I had 2 episodes of "status" Partial Complex seizures (I have temporal lobe PCS and am taking Dilantin with full control).  I also have heart problems with ergotamines, nixing taking those as a preventative.  I am allergic to all NSAIDS except "Tylenol" (anaphylaxis).  Other seizure medications that were tried also caused seizures though not "status".  Some had severe side effects (liver) causing me to stop them.  The effects I am experiencing are similar to a stroke at times, but short lived. The headaches are there constantly. Any ideas? danni

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Answers (3)
Nancy Harris Bonk, Community Member
7/25/10 9:06pm

Hi danni,

 

It sounds like you are really struggling and I  know how easy it is to feel as if you've tried everything out there, but there are so many medications that can be used for Migraine and headache prevention that it's literally impossible. You can find a list of potential Migraine and headache preventives in Migraine preventive medications - too many options to give up!

 

One of the most important and helpful things is to get an accurate diagnosis. To simplify matters and make it easier for people to get information and treatment, doctors usually go by the gold standard for diagnosis, the International Headache Society's International Classification of Headache Disorders, 2nd Edition (ICHD-II). "Complex Migraine" is not a standard diagnosis per the ICHD-II, and when it is used by doctors, it's used differently by different doctors. That makes it hard for me to know what kind of information to offer you about your Migraines. That's why it is so important to have the right diagnosis. Take a look at this article: Ocular, Optical, and Ophthalmic Migraines. Then you can read more about the different Migraines in: The Type of Migraine Does Matter.

 

See here's the thing if your doctor isn't able to help you, it may well be time to consult a Migraine and headache specialist. 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 hope this helps

Nancy

 

  

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danni, Community Member
7/26/10 12:14am

Nancy,

 

Thank you for your reply.  I looked at the headache specialists in my area and fortunately there is one in Dallas. I just live a suburb away.  It is time to get an accurate diagnosis as possible. The pain and symptoms have been lasting for years.  The "Complex Migraine" was diagnosed since the symptoms I had, as well as the headaches, were symptoms similar to a stroke.  Since I also have epilepsy, even though controlled, it confounded the ER and the Neurologist I  see (his specialty is epilepsy).  I can't begin to count the number of drugs we tried to include a 3 day inpatient stay.  Somewhere, somehow, something has to work.  Now that I no longer work (due to another medical condition that has me on 100% disability with the VA), I'm limited to the medical insurance that my husband has from retiring from the military.  Very few MD's will accept it and paying out of pocket unfortunately is not an option at this point.  But I'll keep on trying to find an solution. 

 

Once again thank you so much for your help.  I will look into some of the articles you mentioned and see where I can go from there.

 

Thank you,

danni

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Nancy Harris Bonk, Community Member
7/26/10 8:19pm

Hi Danni,

 

Try to see that Migraine specialist when you can, that may make all the difference. After you see him, let me know how it goes, ok?

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KRAZYKAT, Community Member
7/24/10 9:18pm

If I was you, I would ask the dr. to test my hormones..at different times. 

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danni, Community Member
7/24/10 9:30pm

I had a hysterectomy at 25 (now in my mid 50's).  I've had all sorts of tests done over many years all being within normal limits.  The biggest problem now is trying to find a way to control the pain or reduce the frequency and severity of the migraines.  All the meds tried have either been problematic with side effects or they didn't work. Others I can't take for various reasons.  Unfortunately we're scratching our heads (Nuero and I) trying to figure out where to go next.  Thanks for your response though.  If I still had my ovaries that would be a good suggestion since migraines can be influenced by hormones.

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MOMSFight4Kids, Community Member
4/28/12 12:41am
I have tried very medication. Recently I was put on Vimpat. This seems to be helping me so far. Also Lyrica to prevent migraines may help too. I don't know if you have been on either of these. It is worth asking your doctor or neurologist. I hope this helps. Let me know if you have tried these and what your doctor says. I am also on Keppra. I wish you the best, Nicole Reply
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By danni, Community Member— Last Modified: 04/28/12, First Published: 07/23/10