I need some help

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~Liz
Regular Member


Date Joined Oct 2007
Total Posts : 120
   Posted 9/1/2010 12:21 AM (GMT -6)   
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.

jimswife
New Member


Date Joined Sep 2010
Total Posts : 3
   Posted 9/5/2010 11:02 AM (GMT -6)   
Im so sorry about your headaches. I too suffer from daily headaches for 25+ years now. How do I cope? It changes daily for me. First, I am not a doctor so this is strictly coming from an individual who suffers as well. Ok, when I get the stabbing headaches (migranes) that pain medicine does not help, I put a heating pad on my head. This really does help me a lot. It gives you some releif. Second, there is an external medication called "head on". Don't laugh until you have tried it. It will not take the entire episode away, but again, any releif is better than none. Third, try to remember that pain medications are simply brain medicine that trys to block certain transistors. Everyone is wired differently so what works for one might not work for you. You can also get "chronic daily headaches" from taking pain meds. Thats kinda where I am at right now. I will be attending a pain clinic to spiral down off pain meds in October. Then, I am going to try to excercise daily so that the blood vessels in the brain can expand instead of constrict. Another thing you might try to do is eliminate things that can contribute to headaches such as diet sodas (eliminate aspartane containing products altogether). Lower caffeine intake. I know this one is strange because during a migrane episode they say to take caffeine to help releave but daily caffeine intake constricts your vessels in your brain. Its a catch 22. Eliminate alcohol altogether. And just remember any chemical containing product will make the headaches worse. Medications are simply chemicals. I hope this brings you some help. Keep me posted.

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 9/8/2010 8:38 PM (GMT -6)   
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.
Don't Care Bout Nuffin No More, Guess I shouldnt even be in this world

~Liz
Regular Member


Date Joined Oct 2007
Total Posts : 120
   Posted 9/23/2010 3:36 AM (GMT -6)   
Thank you both for replying.

jimswife,
I've tried head on myself, so I can't laugh about it. As I've told everyone, I'm willing to trying ANYTHING. But at this point, it seems like I've tried everything, so there isn't much left for me. As for the rebound headache issue, I'm always careful to space out my meds so I don't get rebounds often (and when I do, the relief I had from the medication is worth the "delayed" pain). I don't drink soda or coffee, so the only caffeine and aspartame I intake are from foods (which is pretty low as far as I know). I'm on (or have been on) all of those migraine "diets." I hope the pain clinic is helpful for you, I hate hearing about other people suffering like me, even though it is nice to know that I'm not alone.

SmurfyShadow,
That's sounds like really good advice, I've tested positive for ANA and have a lot of symptoms, so I'm being tested for autoimmune disorders. Using your advice of a second opinion, I asked my family doctor his opinion, and he looked at my MRI and said he didn't know what the ER doctor was seeing, but he didn't see any cause for concern, and in the report, there wasn't any listing of a large vein...Our family is a little confused at this point...is there a large vein or not?

Thank you both for your help, if anyone else has any advice or words or wisdom, I'd appreciate it.

Abaranowski
New Member


Date Joined Sep 2010
Total Posts : 4
   Posted 9/24/2010 6:40 PM (GMT -6)   
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.

wolflover
Regular Member


Date Joined Sep 2010
Total Posts : 222
   Posted 9/24/2010 8:03 PM (GMT -6)   
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.

wolflover
Regular Member


Date Joined Sep 2010
Total Posts : 222
   Posted 9/24/2010 8:03 PM (GMT -6)   
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
Regular Member


Date Joined Oct 2007
Total Posts : 120
   Posted 9/24/2010 8:14 PM (GMT -6)   
Abaranowski,
I don't know if this has anything to do with what you are talking about, but I started my period very early, I was 7 or 8 I believe (most likely 8). And my migraines are all the time, some my doctors figured they weren't hormone related. Though I did just look up estrogen dominance on google, and I seem to have a lot of the symptoms, so I will talk to my doctor about it the next time I see him. Thank you for the advice, I appreciate it!


~Liz

Abaranowski
New Member


Date Joined Sep 2010
Total Posts : 4
   Posted 9/24/2010 10:12 PM (GMT -6)   
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
Regular Member


Date Joined Oct 2007
Total Posts : 120
   Posted 9/24/2010 10:24 PM (GMT -6)   
Wolflover,
As far as I know, the only parasite I've been tested for is ticks/lyme disease. But both you and Abaranowski have given me great advice on what I should try next. I'm so used to hearing "You're tried everything, there's nothing left." Even if I don't have anything wrong with me that either of you mentioned, I'm grateful for the hope you've given me that there is something more to test, something more to try. Thank you so much!

Best wishes to you both,
~Liz

Abaranowski
New Member


Date Joined Sep 2010
Total Posts : 4
   Posted 9/25/2010 3:28 PM (GMT -6)   
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.

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 9/29/2010 9:51 PM (GMT -6)   
You can request any medical documentation, tests to obtain a copy. Have to fill out a piece of paper, but worth it. I do it with my MRIs of my tumor, and take the copy with me to every doc appointment that I know is going to be curious about it. Request a copy of the original test that claimed you had that large vein, and take it to a radiologist (basically a test reader) in a teaching hospital for a second opinion. There of, you can find out what exactly is being seen.
Don't Care Bout Nuffin No More, Guess I shouldnt even be in this world

Kawasakizx10
New Member


Date Joined Oct 2010
Total Posts : 15
   Posted 10/10/2010 7:41 PM (GMT -6)   

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.


Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 10/11/2010 4:51 AM (GMT -6)   
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.  by Kawaskizx10
 
I think we tread on very dangerous ground when we seek to judge anothers pain.  One persons 10 is anothers 6  or 8, it is relative to our experience of pain! The key thing here is whether the pain is durable or not!!!
 
The reality is as headache sufferers we all experience dreadful pain, some of us continually, and it is that fact that should be supported not judged!
 
Liz - I would strongly advise you to see a Neurologist who is a Headache Specialist as they are best placed to know 'Headache' and the relevant treatments.  I think you will find that most Headache Specialists will actively discourage any sort of narcotic med, but will find something in it's place to help you.  Once I saw a Headache Specialist I have not looked back!!! That doesn't mean there are easy and quick solutions, far from it, but I have a much better quality of life!
 
Kawasakizx10 - I think you will find on talking to a professional in this area that no matter what sort of personality you are or disposition, Narcotic meds are ALWAYS addictive and produce rebound headaches. 
Co-Moderator of the Migraine/Headache Forum

DX: Hemicrania Continua, Chronic Migraine, IBS, Allergic Rhinitis and Heart Murmur

Meds: Imigran Injections, High Flow Oxygen, Mebeverine, Lansoprazole, Nasonex and Clarityn

Kawasakizx10
New Member


Date Joined Oct 2010
Total Posts : 15
   Posted 10/11/2010 5:48 AM (GMT -6)   
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.

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 10/11/2010 5:58 AM (GMT -6)   
Hi Kawasakizx10

Can I ask, do you have any medical training?

take care

Ann
Co-Moderator of the Migraine/Headache Forum

DX: Hemicrania Continua, Chronic Migraine, IBS, Allergic Rhinitis and Heart Murmur

Meds: Imigran Injections, High Flow Oxygen, Mebeverine, Lansoprazole, Nasonex and Clarityn

Kawasakizx10
New Member


Date Joined Oct 2010
Total Posts : 15
   Posted 10/11/2010 6:56 PM (GMT -6)   

Hi,

I have answered that question in a previous post.

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

Thanks,

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 10/12/2010 10:43 AM (GMT -6)   
Hi Kawasakizx10,

I would draw your attention to the Forum Rules, Rule 20 in particular!

20. Do not use the forum to give professional medical advice. If you are a medical professional, please remember the forums and chat are for patient support and not to be used for distributing professional medical advice and/or using the forum to represent your professional services

take care

Ann
Co-Moderator of the Migraine/Headache Forum

DX: Hemicrania Continua, Chronic Migraine, IBS, Allergic Rhinitis and Heart Murmur

Meds: Imigran Injections, High Flow Oxygen, Mebeverine, Lansoprazole, Nasonex and Clarityn

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 10/12/2010 2:40 PM (GMT -6)   
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
~~Kitt~~
Moderator: Anxiety/Panic, Osteoarthritis, GERD/Heartburn and Heart/Cardiovascular Disease.
www.healingwell.com

"If you can't change the world, change your world"

cjthedj13
New Member


Date Joined Nov 2010
Total Posts : 10
   Posted 11/20/2010 11:08 PM (GMT -6)   
Not sure if this will help you or not but thought I would share my story with you. I've suffered from severe Migrane headaches for well over 10 years. I had been to 6 different Neurologists and each one of them had given me different prevention pills to try and keep the headaches away but nothing worked and I was tired of putting all that medication in my body. Well, one day at work I was talking to a co-worker who had suffered for a long time from Migranes as well and had come across this all natural juice called. She had tried it, and after just a few short months was completely headache free. I was pretty hesitant at first myself, but at this point, I had sufferered for so long, that I figured I had nothing to lose. This juice comes from a desert cactus in Arizona and Mexico. Basically, what you do is start with a loading dose for 1 month which is 3 to 6 ounces a day just to get the toxins out of your body. I started to feel a lot better after just a few days and after a month on the juice, I felt like a totally new person! It has many more great health benefits too! It also helps with inflamation, reduces swelling in joints and muscles, helps with allergies, reduces stress, gives you more energy,and more. And the best part, you have a 60 day money back guarantee. If you don't like it, or you don't get results, you get your money back, no questions asked, it's that simple! I was impressed with the company so much, that I decided to become an affiliate and start selling it and telling people about it
 
I have edited your post to remove the web addy and would refer you to the forum rules about advertising - Ann
 myself.

 

Post Edited By Moderator (Annuk) : 11/21/2010 11:07:41 AM (GMT-7)

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