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Old 01-02-2010, 08:41 PM   #1
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Severe Migraine Headaches

Im 16 years old and am suffering from severe migraine headaches.

They first came when I was 11, and the headaches came everyday, everynight, 24/7, for about a month. At this time I saw many doctors, and got a CAT scan and a MRI which both showed up clear. I also saw a neurologist who recommended topomax ( an anti-seizure drug proven to reduce and prevent migraines). My parents were unsure, and by the time they had come to a decicion, the headaches had gone away on their own.

For the next year I still got migraines, however they came speraticly and could usually be treated with pain killers. When I was 13, the severe, 24/7 headaches returned for about 6 weeks. At this time I started going in and out of the ER, getting treatments of maxeran, torridol, and benedryl. These treatments worked minimally, and so my parents decided to take up the topimax the neurologist had reccommended.

The headaches dissapeared almost completly for the next year or so, but when I was 15, the headaches returned again. my parents phoned the neurologist, who said that often a second dose of topimax was needed if the headaches returned. This time, however, he doubled the dose. When I first started the topimax again, it was early summer and I was 16. It immiadatly had an effect. The headaches dissapeared, but in it's place was depression. My parents noticed a change right away. I'm usually really happy and upbeat, but I can't explain how I felt under the influence of that medicine. I soon developed an eating disorder, and I lost about 50 pounds over the course of three months and became extremly underweight.

My mom took me to see a doctor who said to get off the topimax. The day I took my last pill, the headaches returned. This was in october. I am still having the same 24/7 headaches today. It is majorly affecting my schoolwork because I can't go to school, I can't hangout with friends, I can't do any of the sports I played, I can't do music lessons, and I can't stay on the student council I was on .

Today I am seeing an eating disorder clinic about once or twice a week, and I go to a pain managment clinic as well. I'm eating very well now, and have restored almost 20 pounds. I am on a new medicine, ammitryptilyne, but it doesnt seem to be working and its been about three months. I have been in the ER countless times, getting the same treatment which gives me about 12 hours of releif, if that. I was also in the hospital for about a week where they did a DAX treatment, a migraine treatment that works on 97% of people, but apparently not me. they also did another MRI, which showed up clear. My current symptoms incude: severe head pain, dizzyness, vertigo, ringing ears, extremely sore neck and spine, exhaustion, loss of vision, nausia, and occasional abdominal pain.

If theres anybody who has any idea of something that will help me, it would be greatly aprriachiated. i feell as though i have tried everything; all of the medinces a doctor can perscribe as well as all of the herbal treatments ( accupuncture, energy therapy, massage therapy, physio therapy, sleep therapy, ect)

 
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Old 01-03-2010, 08:12 AM   #2
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Re: Severe Migraine Headaches

i really am so sorry you have had to go thru all you have emily, really, i can sooo relate to the headache crap and how it just totally impacts you and your life you want to have too. my migrane hell started at age 13 like the second i hit puberty. my eyes went all crazy, everything looked like i was looking into a broken mirror?(the pre migrane aura) then the slammin headpain for the next 12 hours. there simply was nothing even invented back when mine started(early 70s) that even touched a migrane. it was a very long nine years of 7-10 migrnaes per month before a wonderful med called "midrin' was invented(1981) that actually aborted the headaches before they really got a chance to develop? i could actually function in about 45 minutes. god that was amazing.

do you actually get that pre migrane aura with wierd stuff happeneing BEFORE that head pain part hits or "just' a sudden onset headache? this DOES matter as far as what would possibly work? besides topomax,there ARE other meds in that same class/group that could possibly do what the topo did for you, have any other anti siezures like the topo been tried yet? ironically i too was placed on the elavil/amytriptaline and it did NOT work for me either. just turned me into what felt like a zombie even when i only took it at night, it still impacted me that bad the next day.

i am just wondering a couple of things here em. have they EVER actually tried to simply abort each individual headache instead of trying to wipe out even getting them? sometimes you just have to treat each individual headache presentation with the abortives like i ended up doing? it can work depending upon what gets used and how your particular headache presentation occurs too? i still to this day am taking only the midrin when my eyes start to get flashy? and within about that 45 minutes, the eyes are still clearing and the headpain is just very very light. its soo much better than i was dealing with when i had nothing, ya know? have you ever tried the midrin? it really is a great abortive migrane med. i have never had to try any of the other meds since starting this sucker in 1981. it still is working on each headache like it did even back then.

just what occurs RIGHT before that headpain pops in, anything that is kind of a 'warning sign"? that would kind of dictate what would be possible to actually use just to try and treat them individually. i just never had ANY luck with alot of different meds that were trying to wipe out the headaches from even happening in me so we just ened up doing it this way. at least it works. and i could have a life. the one thing about actual migrnaes is they usually start to lessen in how many you actually get as you age. but that of course does not help you now.

the other thing i am wondering about here is you stated they did an MRI on you? was that ONLY the brain or did they actually look hard at what could be triggering these that could very easily be in the neck area within the c spine level? one of your ongoing symptoms you stated WAS neck pain? that is just one possible place that CAN create headpain, very severe headpain depending upon just what is being impacted or affected within the c spine up there.

they just really need to try some of the abortives possibly if they never have(treating each individual headache seperately?) but definitely need to take a good look within your c spine too. you just do not have a clue as to what can be within your own body in any given area til you at least try looking into it with some level of good scan. believe me we have found things in my body/spine and my sons body as well that we did not have a freaking clue even existed til it was scanned in some way and found this stuff. it should just be done on your c spine considering symptoms and pain there too?

depending upon just what this current neuro has tried for prevention of these for you, if he has only tried one of the many many anti siezure meds that are a bit different from topomax but within that same drug class, i would either ask him about others or trying the abortives or maybe start seeing a different neuro depending upon just how long you have been with this one? sometimes specialists just get lazy when we are seeing them over and over again, and just kind of 'settling' for certain treatments which another neuro who has never seen you before would possibly jump in and start trying more things to help? that of course would depend upon just how really truely helpful this one actually is or has been and what your parents feel too.

i just do feel so badly for you and all you have had to go thru here. i know how much that all really just hurts and sucks and what it keeps you from just doing,living YOUR intended life. hopefully they can find something that will actually work for you between the other possible options to try and keep them to a minimum OR simply treating them as they occur. i still do it this way and have been able to live a pretty good life despite the reoccuring migrane crap. when they come, they get hit with two midrin, and within 45 minutes i have my life back and can continue on with my day. that is what i hope they can do for you emily.

just wondering hon. do they KNOW without a doubt that these actually are 'migrane' headaches, or is that kind of just the "label' they have been given by you or what they 'think' they actually are? makes a difference thats why i am asking. do these actually run on either side of your family? mine i do know came right from my dads side of the family with about six different people there getting these too. they really can run in familys. i hope something ends up working for you emily. but getting that good look at your c spine i think may help in either finding something or at least ruling that area out since it can be a trigger for some pretty severe headpain events. it all depends upon just what is or is not there. please let me know how you are doing em, K? FB
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 01-03-2010, 08:36 AM   #3
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Re: Severe Migraine Headaches

When do your HA's get the worst? At night, while you are sleeping? After school? Do you try to keep a log or journal? I am a firm believer in empowering yourself and being a part of your team to help you figure out how to get a handle on your headaches.

I remember when I was in the 2nd grade and the pediatrician asking me if I really just didn;t like my teacher and wanted to come home. he did not believe a second grader could have headaches. Thankfully, my Father, who was also a dentist also had headaches in the 2nd grade. He understood. My mother never had headaches and just didn't get it! She still doesn't and I'm 50 and she's 76. Dad still does get it and he 77!

It takes HA people to truly understand headaches!

I GET IT! I stopped getting migraines around age of 28. Now I have something entirely different. Ye! Ha! Just remember you should be part of your medical team!

 
Old 01-03-2010, 11:43 AM   #4
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Re: Severe Migraine Headaches

Yes, I have tried abortive medicine, all the tryptanies and midrin and such. They don't work for me. Even the one thats 30$ per pill! I do get auraus before a migrane but this is one migraine that has lasted over three months.
When they did the MRI, they just looked at the brain, however doctors have analyzed my spine and neck and it seems that I now have a tension headache on top of the migraine.
They dont know that its forsure migraines, no. My mom and her sister both had simillar issues, however my mom got hers after pregnancy and my aunt got hers during menopause.
For all the doctors know, it could be some rare virus.

 
Old 01-03-2010, 11:47 AM   #5
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Re: Severe Migraine Headaches

And the headaches are worse all the time. The pain wavers from about a 9/10 (at which point I cant move and am in extreme pain) to about a 6/10 ( at which I can walk, talk, eat and think, sometimes even do schoolwork)
I have kept a journal in the past but theres nothing that would help now. Everyday the journal would look the same, because I ALWAYS have a headache

 
Old 01-04-2010, 08:42 AM   #6
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Re: Severe Migraine Headaches

god i just soo feel for ya em. i am just wondering, have you been seeing the same exact neurologist the whole time since these began or have you also seen others too? trust me here when i say that not all specialists of any type are all created equal. if you are really not getting any real relief thru this particular neuro, move onto another who may know more and just have alot more overall experience and knowledge than the one or ones you have been seeing? it can make a huge huge difference in just finding that perfect neuro for this type of a headache hell.

that is just what i would do at this point hon only becasue you DO deserve not to have to suffer like this. is there any type of good university teaching hospital near, even a couple of hours away from where you live at all? if there is, this is seriously where i would try next to see what would be the ehad of the neurology dept? this is what i ended up doing for my very insane and rare glob of blood vessels i had that i was born with inside of my spinal cord? did not know this glob was there til it just showed up in my cord when i herniated a disc and had to have an MRI? i was on my THIRD opinion when i finally went to my local university here in MN, the U of MN? and found the most amazingly knowledgable NS ever who just knew what i had and everything about it that the other two seemingly knowledgable neurosurgeons i had seen before did not, not at all.

it came down to this particular neurosurgeons overall length of time as an NS(37 years) and being the head teaching prof and him just treating what i happened to have hundreds and hundreds of times over the years that gave ME the most wonderful and accurate info and NS possible. it does just come down to finding that neuro who simply has seen what your headache patterns are and what could be causing them and to just do the propper testing and finding the right treatment options. but another neuro may be the one who actually has seen what you are displaying before, ya know what i mean? thats why god invented the second opinions for us, lol. or third or fourth, whatever it takes to just find the one who can truely help you in all the best ways. but the university teaching hospitals really are where alot of the people who have been told no treatment options availiable or that we can't help you just go to for help. so they DO see alot of the more rare conditions there. it would be a really good place to go if avaliable. mine was a true miracle to find what i needed at.

this is just a really solid suggestion for ya emily. don't know if you have ever gone that route or its possible but it sure would be a great place to seek treatment and or an actual real Dx of what is creating this ongoing hell inside your head hon. but either way, i really would seek out another neuro if this current one has run its course as far as getting this under some type of real solid control for you.he is simply of no real use to you if he is not helping this at all ya know? someone new may have other ideas or options since they just may know one heck of alot more than your current one does. every specialist just IS very uniquely different than any other is. it is simply 'their" overall knowledge and experience with YOUR condition that matters. you could find that one neuro who WANTS the challange of what trying to treat your condition just brings with it too. that IS the type of overall doc you always want to try and find.

i hope someone can help you very soon emily. please let us know how things are going hon, K? FB
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 01-04-2010, 10:37 AM   #7
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Re: Severe Migraine Headaches

Hello Emily,
I believe that you are in a full suffering state(pain plus hopelessness. The medications which are not only expensive have their well established side effects. It is sad to hear a story like yours and I believe your doctors are having a hard time figuring out what is really wrong. If there was a tumor noted then it could explain what you feel but the absence of proof compounds the problem. Migraine and muscle contraction/tension headaches can now be easily relieved by a 15 second manipulation. Actually to just remove the pain a one(1) second manipulation will immediately abort your complaint. If the headache still persists and you may want to have a non-invasive treatment which may give you remissions lasting 2 to 9 years then e-mail me. Let us try to work this out - it is so simple and immediate to give relief to cases similar to yours as I have been relieving migraineurs for the past 20 years - instantly! Do not despair, there is a very great chance to remission or even "cure". Doc Chris

 
Old 01-04-2010, 10:59 AM   #8
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Re: Severe Migraine Headaches

all that you have to do is don't eat to much butter, preserves, canned foods, cheese,peanuts and stay away from coffee and coke... when you have a serious headache go in a dark room and drink something warm... this should work...

 
Old 01-04-2010, 04:51 PM   #9
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Re: Severe Migraine Headaches

The neurologist I'm seeing right now is actually the migraine speciailist ina team of pediatric neurologists at the university at my city. I've seen other neurologists from this team as well, as they try to solve problems as a team. However, if this team can't help me within the next couple of months, my parents are going to take me to the mayo clinic. As you said, feel bad, a second opinion can be very valueble.

Dr. Chris, what is this 15 -second manipulation your talking about? If I could find someone in my area who could do this, I'd be more than willing to try?

Nalinee, thank-you for the nutrition advice. I am seeing a nutritionist who has me on a very balanced diet and I do try to eat mostly organic. I have tried removing both caffiene and aspertame from my diet completly, however it didn't have any effect.

 
Old 01-05-2010, 07:02 AM   #10
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Re: Severe Migraine Headaches

Hi Emily,

I also suffer from horrible migraines for many many years now. I take a medication called inderal - It is actually a beta blocker typically used to treat high blood pressure and heart rate abnormalities however in very low doses it is used to prevent migraines. I have been taking it for a couple of years now and it does help. I do still get migraines however I get less of them. This medication has to be taken every night though and also should not be abruptly stopped so considering your age I'm not sure they would give it to you but it is worth asking about. My headaches were significantly cut down. Good luck to you!

 
Old 01-05-2010, 11:38 AM   #11
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Re: Severe Migraine Headaches

Thankyou for the suggestion of inderal. There are many medicines proven to work in adults, but they haven't been introduced into pediatrics and because I'm still 16 and I have a relatively low BMI, I am only allowed to try pediatric medications.

As for the book, I will definatly look into that. What sort of points does it suggest?

 
Old 01-06-2010, 07:52 AM   #12
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Re: Severe Migraine Headaches

just an FYI about the inderal emily? my cousin, who also had the very same nightmare inherited from the same side of the family i did, ALSO was Rxed inderal for his migranes too and he HAD to be at least your age if not a bit younger back then? believe me, we TALKED alot back then on the phone about these hidious headaches since we were both still in high school at the time(i was in senior high). but he is about four years younger( he was in junior high school then) than me so i KNOW without a doubt that they at least were or still are Rxing inderal to ped patients. if you have not yet tried any of the beta blockers em this could possibly work for you too? he said that the inderal did work but it made him tired, but i do not know exactly when(morning or night) he actually took it.

if you have some time em, just do a bit of searching on beta blockers and migrane hon and see what you can find out about them and bring the info to your doc. they ARE worth a shot for what YOU are suffering thru here right now. peds just at times HAVE to take certain cardiac meds for all kinds of real conditions so i would imagine they just titrate down the average adult dose(or by now they more than likely actually have ped doses) or some are just done by calculating your overall weight too? just do some research so you can discuss this as a possible option to at least try. anything IS just worth that try to see how it works for YOU and your very individual type of migrane pattern/syndrome you get. good luck hon, and DO keep us all posted em. FB
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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