I need some help

I'm 20 years old and have had chronic daily migraines for the past 7 years. I have seen several neurologists, pain management doctors, and have been to the Ann Arbor headache clinic, Cleveland headache clinic, Diamond headache clinic, and Mayo. After trying everything, all of the doctors eventually told me I would just have to learn to live with the pain. I used to be severely depressed and would think about suicide a lot (never actually tried it though). It's been about 3 years since I last thought about it though. However, last week I had 2 seizures (had never had one before that) and I haven't been able to keep food or liquids down for long since then. Also, my migraine has been a 10 on the pain scale non-stop since, and none of my pain meds have helped. Normally, I get a shot of Demerol every 9-12 days at my doctor's office (that's the only pain med he had there) to help the pain, but now I can't have that because it can cause seizures (even though I've been getting the demerol for about 4 years and never had a problem). I can't go to the ER to get something because they think I'm a drug seeker. So now I've got this severe migraine and nothing to relieve it...it's really wearing me down. I really don't want to keep living if this is all I have to look forward to. Does anyone have any tips or suggestions?

Also, when I had the MRI after the seizures, they said there was a very large vein in my brain behind my right eye. My migraines are always behind my right eye. Does anyone know if that vein could be the cause of my pain? The doctor said it's probably been there my whole life, so the headache specialists that I've seen before must have seen it, but they never said anything about it.

Thanks everyone.

Given your MRI, I would seek a second medical opinion, which you can do as often as you like. The inflammation of the vein is probably pressing on nerves which are causing the migraines. However, you need the proper testing. Go to a TEACHING hospital, as they have the latest technology in the occular area. Usually, a large vein like that will have an autoimmune disease also playing in effect. A doctor specializing in: Uveitis and Ocular Immunology, Ophthalmology, Immunology / Rheumatology, Arthritis & Rheumatic Diseases would be the best bet. You can usually find an "all-in-one" like that at a teaching hopsital in the Eye Institute.

Moderators, this is bases on my PERSONAL experience, not medical training.

I am still in the process of trying to find out which autoimmune disease I have, but I had similar problems. Mine turned out to be a tumor. I don't think you have a tumor, from what you mentioned on the MRI. But something is causing that vein to be really big--that something is more than likely your migraine cause. The tumor was my cause, after we found out what was wrong.

Liz.... you were 13 when the migraines started? You were probably experiencing significant hormonal changes at that time, and so I would suggest looking into hormonal causes. There is a condition called "estrogen dominance" that is also connected with seizures and migraines and it's possible that your body shifted into an estrogen dominant state when you were 13. Birth control pills will also worsen the condition. You can google "estrogen dominance seizures" to get more information. Hope this helps.

Have you thought about going to a parasitologist? In school we have studied a lot about parasites and sometimes people can go there whole lives in pain because they never think about it. You could have got it through food, water, an animal, dirt,there are so many ways. If you don't have estrogen dominance,that is in my opinion the right way to go.

Liz, I'm not sure about the connection but starting menses that early is certainly notable. I believe it is the increase in estrogen in the body that leads to puberty in the first place.

I suffered from migraines for 3 years with 4-6 per month, all times of the month, so when someone suggested a hormonal issue to me, I blew it off. I blew it off for over 2 years until I'd tried everything and talked to 3 different doctors, none of whom could help me.

Before you see your doctor, consider arming yourself with more info on the estrogen dominance topic. What Your Doctor May Not Tell You about Premenopause by John Lee, MD, is a very important book on the topic. It is THE book, I believe.

My cure, which I started a year ago today, was progesterone cream, prescribed by my OB and created especially for me by my compounding pharmacist. $35 a month. Sure beats $100-$150 a month for imitrex. And I'm migraine-free.

I find the parasite idea incredibly interesting too. You just have to keep trying until you get your answer.

Liz, a quick factoid from the Dr. Lee book I mentioned above: one of the listed symptoms/conditions of estrogen dominance is "early onset of menstruation." So you definitely have a link there.

Also, here's a link to a resource where you can look up your local compounding pharmacist/hormone consultant by zip code. Be sure to look for a pharmacist who does hormone consulting or focuses on bio-identical hormone replacement. My experience is that traditional medical professionals are not always open to the concept of "estrogen dominance" and so you must have enough info when you visit them to make your argument. They'll want to order a blood hormone test, not a saliva hormone test, and without going into detail, a blood hormone test could show hormones within acceptable ranges where a saliva test will reveal estrogen dominance. I felt like I had to "fight the system" to get my cure.

http://www.iacprx.org/site/PageServer?pagename=lookup_survey

I'm glad we gave you some hope. Sometimes that's all you have and it gets you through another day. Please keep us posted.

Well I would start by saying that your pain is a 10 is hard to believe.  When I am in 10 pain, I literally pass out and can't speak.  It's only happened 3 times.  I dislocated my knee and I screamed until I passed out, etc.  so a 10 may be a little excessive.  I would believe an 8 or maybe a 9, but remember to be realistic about your pain.  I suffer everyday and the pain can range from a 2 - to an 8 and maybe a 9 if I let it get bad. 

Demerol is not a good drug to even consider taking for headaches often.  Especially, because you may becoming addicted to it without even knowing it.  Physiological and Psychological dependency can be one in the same when the symptoms emerge.  I am not saying that I don't sympathize with you, or that you dont have pain, just that Demerol is definitely not a solution, short term or long term.  Have you tried other narcotics daily?  Like tramadol, hydrocodone, oxycodone?  I realize these medications can cause dependency as well, but they may help with pain and are better than demerol.  The other thing that I have found to help is Lyrica.  I have some annoying side effects with it, but sometimes you just have to deal with the side effects to live without the pain.  I was just recently hospitalized and they gave me hydromorphone for pain, and Oxycodone IR in pill form works much better and is by far a better pain reliever than any of the shots you can get at the hospital.  The problem is, that this medicine can dehabilitate you because of the strength (it takes away my pain but I hallucinate) This is why I ask if you've tried other narcotics.  Now if you feel as though you are at risk for addiction, then you may want to reconsider these types of medications because you can spiral out of control and become an addict.  Then you are really on a bad path.

Please realize I am not trying to be harsh, just trying to put perspective on the situation.  Please let me know if you have any questions.  I actually use Norco 10/325 3 - 4 times daily with maxalt and maybe 1 extra norco on a really bad day.  I try to use lyrica off and on because it also helps.  Dependency does suck, because you have to go through withdrawal.  Luckily I don't get headaches, my body just feels off for 5 - 7 days...  and then my headaches return to daily if I stop the Norco.  But again my situation is unique as yours is.  So my meds may not touch your pain as your meds may not touch mine.  I hope this helps.  Don't feel hopeless, because suicide is a long term solution to a short term problem and you don't know what will happen in your future.  Your head may suddenly feel better.  I know someone that this has happened to.  Don't give up.  Try new things, and combinations of things.  I have also found that a saline IV works wonders with head pain just in itself.

Good Morning,

My comment about pain was merely to gain an understanding that this is true 10 pain.  I'm not saying that she is not experiencing this sort of pain, just that I want to make sure this is the case.  I have the CDH, I to know what H@#$ is like.  I'm there, have been for a long time...

Anyways, I knew this might stir a little controversary I just wanted to make sure things are in perspective.  Pain is a subjective experience and she may be to a 10, I am a blunt person, straight to the point, and I like to question everything.  It doesn't mean that I don't believe.  I don't mean to cause any offense either.

And no not all doctors believe in the rebound effect.  In fact, I am one of them.  I believe in withdrawal effect.  Very different, 1 is medically proven with scientific evidence, the other is only ~50% of the time.  Please research this, read articles in science journals not crap from Mayo Clinic, because they just say every medicine causes this effect to a migraine sufferer.  I think each person is individualized and will react differently to different treatement plans.  Narcotics are not for everyone, just as SSRI's are not for everyone.  I myself have tried over 45 different prophylactics and have had little success with 97% of them.  This is because pain can cause depression as depression can cause pain.  But treating depression for a person that is not depressed is going to have some not so good side effects.  As migraine sufferers, many of us are very sensitive to medications, which is inherently another issue.

Narcotics are definitely not the first line of defense, but in this case because she has had good reaction to the demerol she may have luck with a daily dose of an opiate pain reliever such as Hydrocodone, etc.  This may reduce the pain and the frequency.  I agree she needs to have a nuerologist or a pain specialist.  She will probably have breakthrough pain.  For this she may be able to take a triptan, NSAID or even a prednisone pack that might help.  As with many of the migraine prophylactic treatments, there is the risk of withdrawal syndrome, which includes the risk of increased headaches, fever, chills, general discomfort, etc.  Like I said, she also may find relief from an IV saline solution, I know this helps reduce the pain for me by 2 notches when they are really bad.  I am lucky enough that I have a couple of saline bags at home, and I can just plug in and it really helps, and there's no side effects whatsoever.

Remember there is a big difference between dependence and addiction.  An addict uses the drug to get a euphoric feeling.  A dependent person uses the medication do continue a somewhat normal life.  She may need this medicine to move forward.  I hate to see anyone suffering this much because I myself have been there.

Hi,

I have answered that question in a previous post.

If you have more neuro related questions, please ask away.

Thanks,

I would just like to add to this topic, “Pain is whatever the experiencing person says it is, existing whenever the experiencing person says it does.”

Kindly,

Kitt