Chronic headaches have ruined my life- I don't know what to do :-(

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JimJamWoobie
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Date Joined Jan 2012
Total Posts : 3
   Posted 1/17/2012 8:29 AM (GMT -6)   
I have came here as i have nowhere else to turn. My friends, family and partner don't seem to understand to the full extent of how much pain i am in everyday. I am 17 and have suffered from severe migraines for four years now, the past two years i have also suffered from chronic headaches that are present from the moment i wake. .Till i go to sleep.
I have seen every doctor at my surgery and have even been reffered to the childrens unit at the hospital.
I have had an MRI scan, blood tests and urnine samples and everything is clear. I have also been sat in a room and questioned how i feel to rule out any underlying mental condition/illness that may the causing these headaches but that too is clear.
I have been put on every medicine (triptans, beta blockers, anti-convulsants etc) i can be put on at my age. .And yet nothing has workes. The only one that had some effect and took the edge off my daily headaches was Topamax but I had a bad side effect from them.
I have even tried many herbal remidies and techniques and nothing works.
I have taken paracetmol, ibruprofen and even stronger pain killers (codine) that have been prescribed for other people in my famy as i am that desprate for relief. ..I cant rember the last day i went withot a headache.
I have also kept a diary. .Yet no triggers or any pattern is obvious to what may cause them.
I no longer know what to do, i have recently been discharged from the hospital due to being 18 soon in three months so i am totally on my own. I have been told that when i am 18 to go to my GP and see if they can reffer me to the adults neurology unit at the hospital. However, it took me the best part of four years to get the first refferal in the first place.
Untill i am 18 i have to wade through this on my own :-(.
I am loosing out on having a social life, my three year relationship is on the edge as i can rarely see my partner, my friends are no longer intrested as i cant go out, i risk being kicked out of college despite having medical/docotr notes of my diagnosos as i am never in for a full week, I am sturggli g to sit and revise for my A level exams and my future at uni seems out of reach as i feel i will not get ue grades i need, i have been asked if i still want my job and risked being sacked.
People think i am being a hypochondriac and just in it for the pills...they dont understand how desprate i am to feel human again.
I am literaly falling apart. ..I feel so miserable and down. I am not myself at all. I have even had days where i just feel like taking a bunch of pills and ending it all just to not be in pain.
I was hoping that by coming here i will know i am not on my own and that my hope of being able to feel human again will be restored. Also, does anyone have any tips or advice at all please? I am willing to go to any extent just to go a day without.

For the record as well, as far as i am aware the daily headaches arent rebound ones. It was only a year into having the headaches when i began to use meds. Also, it has been months since i last took any meds for them. My logic is "if it doesnt work. ..Theres no point in taking it".


Thank you for your replys in advance
Xx

perception
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Date Joined Jan 2012
Total Posts : 15
   Posted 1/17/2012 5:57 PM (GMT -6)   
Soybean oil is in everything. If it says veg oil it may be soy so avoid. Eat only at home for a period. Avoid processed everything. Use french bread w/o soy or make your own breadmaker recipie using olive, etc. If 2nd ingredient is soybean you will probably get headache within 8 hrs. Buy lowest content soy in margarine or use butter. Shortening is sometimes soy. consider switch to lard or butter and use in moderation. Zomig is good at aborting migraines but also no more than 10/mo. Avoid medication induced migraines. I have had good results. You are too young to be suffering with migraines. OTC's can be problematic. Be careful.

FixedFinally
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Date Joined Jan 2012
Total Posts : 1
   Posted 1/18/2012 8:27 AM (GMT -6)   
Jim,
 
I feel your pain. I am so sorry you are suffering from this. I would love shed some light on to how to help you but I will wait for you to contact me. I can change your life! Contact me at
 
7. Do not post offline personal contact information (ie. your home address, phone numbers etc.) and do not ask for personal information from others. This is to protect your security and identity.
[removed email address - please use profile page to show your email]

Post Edited By Moderator (notsosicklygirl) : 1/18/2012 12:14:41 PM (GMT-7)


notsosicklygirl
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Date Joined Dec 2008
Total Posts : 16277
   Posted 1/18/2012 1:15 PM (GMT -6)   
Has the doctor ever recommended an antidepressant? I started one for my migraines and I've been doing much better since - I haven't had any migraines. Please ask the doctor if something like this may work for you. I use Pristiq but I am sure there may be other options.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: Asacol (3200mg) + 6mp (25mg) + Pristiq (50mg) + prilosec (40mg) +Canasa (1g PM) + cerazette

Sunglow_Caravan
New Member


Date Joined Jan 2012
Total Posts : 4
   Posted 1/19/2012 3:54 AM (GMT -6)   
Jim,

I was in exactly the same position as you. I have however, just found a good doctor, and am (hopefully) coming out of that period.
I've suffered from migraines since I was 6 after an accident gave me a concussion and they've been my Achilles heal ever since however they only ever came once or twice a month. Two years ago that all changed. I've spent the last 18 months in a virtual hell of pain with incompetent doctors bouncing me around telling me it was "stress" and then that I had ME when it was clear as day that I had Chronic Migraines. It was me and my parents telling the GP what medications we wanted to try out and where we wanted to be referred to etc... We did a lot of research.
Basically I was given awful support. My school; they tried to kick me out because I couldn't attend despite, like you having notes and a legitimate reason. I refused and am at this moment only taking one AS level having dropped my A2s to take a kind of rest year. I will however be behind one year once I pick everything up again and I doubt that doing so will be easy.
The worst thing for me was losing the social side of things. It must be awful for it to have gone on for four years. Two years is bad enough. I discovered who my closest friends were when things got really bad and I honestly couldn't do anything any more. But even they have their lives to live and I can't fault them, and sometimes its hard to understand the amount of pain you suffer when you look perfectly normal.
Like you I've tried a lot of meds and they didn't work, but the I've just been referred to the London hospital for neurology and the doctor there has put me on a higher dose of topiramate than I was using and it's having a brilliant effect. He's also given me permission to start using pain relief medication again which other doctors took me off and made a whole load of other changes that already making a difference.

-What I would do is really push your GP to send you to a specialist. Research every possibility in your area, even if you have to travel an hour and that means you have to spend the next few days in bed. Get a doctor who knows migraines, not a just a neurologist. I'm telling you it makes a 100% difference.
You don't have to wade through this on your own. The point is to be assertive and they will try and see what they can do. You're suffering, they know, they shouldn't be letting you out on your own.
-Don't bother with listening to the faff about triggers... everyone's is different, what your suffering from is sever and you'll have multiple triggers if it is caused by them (though you say you can't identify them.) You won't be able to avoid everything, you're too sensitive from what I can infer. Keep going with the record, that's important.
-The only headaches and migraines that I've come across in the research I've done that don't react to medication (don't hate me for this please) are stress ones. They tend to progressively get worse. I don't know if you've looked into this at all. I'm assuming you've been served all sorts of quack in the last few years and I'm no expert but if no ones said this to you or you haven't actually read anything about it then seriously do. It might just make the difference.

And if you want to chat with someone, I'm happy to :)
Sun

kangar00
New Member


Date Joined Jan 2012
Total Posts : 1
   Posted 1/22/2012 2:12 AM (GMT -6)   
Hi Jimjam
Sorry to hear you are in such terrible pain.I know how horrible this must be for you as I am in the same situation as yourself.
It is also difficult when people near to you can't understand the pain you are feeling.I am lucky that I have a wonderful
supportive husband who does everything to help me get through this.
All the tests and long list of drugs you mentioned have also been in my past.
My Mri scan did show some abnormalities and I was first told I had MS.The first 7 months of my illness
I could not leave the house except when my husband took me to the doctors. Then I was well for a few years then the headaches came
back with a vengeance.Also had nausea, dizzy spells etc.Again housebound for a year this time and like you was in such pain
I considered taking my life. I had been tried with various drugs including topamax ,mycelin(which made me feel ten times worse)
anti-depressants and a list of drugs I can't remember their name.One drug that I had been put on by a pain specialist was
Neurontin (gabapentin) But the dose he put me on was too low and then I was told by another neurologist that I needed a lot
higher dose. I have been able to tolerate this drug but a lot of other drugs I have tried have either made me feel worse or
have had no effect. You did mention that you had tried anti convulsants - have you tried Neurontin? Have you tried it at
a dosage that would work for you? My first dosage that was not strong enough was 100mg three times a day.
Again after this year of intolerable pain it all went away and I was ok for several years but again the headaches have come back
but because I have been on Neurontin for all this time they are not to the level where I can barely get out of bed.I think
when you mention to people you have a headache they automatically think you can just take an otc headache pill and the headache
will go away. They don't realize the level of pain these headaches cause.
I never knew a human being could experience such prolonged pain.
I know you are feeling like you are literally falling apart...you are feeling so miserable and down and you are not yourself. I know this because I still have days like this. But I also have days now when the pain is at a level when I can go out to lunch with my husband, or drive to the shops and look around or laugh at something funny.
I was in such a bad place of pain that I would take sleeping tablets day and night because I couldn't stand to be awake.
But now I can sit at the computer and type out this letter to you.
You need to try and find the right medication that will help you. I know this is difficult and you will try some that will make
you feel worse. It really sucks!!!
I can only advise you to try Neurontin and if you have tried ,maybe try it again at a different dose.
I really do feel for you and I hope with all my heart that you are able to get well.
I never thought that I would improve but I have - so I hope that you will keep fighting.
There are so many people out there with our problem. You would think the doctors would be able to fix it!!!

Good Luck and try to keep smiling :)
(although I know this is hard to do when you are in severe pain)

Maxpain

JimJamWoobie
New Member


Date Joined Jan 2012
Total Posts : 3
   Posted 1/22/2012 8:53 AM (GMT -6)   
Thank you all so much for your replys :-).
I really do appreciate it.
Its brings me confort and reasurance to know that i am not the only one going through this.

Just a quick update to let you know what has happened since i wrote this post.

I was called into my college for a meeting to discuss my future at the school..due to having such a low attendance. They have taken a copy of my medical notes and letters to cover my back as well as their own.
Annoyingly, despite having all these notes and them knowing how much pain i can be in....i have been told that if i dont show a hundred percent attendance from now on..i am out. This itself has rather upset me...i understand to an extent to why they have said this..yet it almost feels like i am being punished for being ill :-/.
I am also trying another herbal product called "New Era"...i used to use this for my period pains and they seemed to help..so i thought i might give the migraine one ago.....seeing as i responded well to it for my cramps. I am also back on feverfew to help with the other herbal one i am on.

So far, the other tablets i am on seem to work a bit for keeping away the migraines however, i have a bad one yet to come and they seem not to help my daily headaches.

I am going to wait another few weeks before i approach my GP again...they have the habbit of saying i havent tried the meds out long enough. I will also push them to try and get me to have a refferal to the adult neurology unit as soon as i am 18.


KangarOO: i havent tried neurotin at all. I will bring that up with them next time i go...its worth a shot as it could be the answer to stopping these headaches.

Once again, thank you all for replying...i will keep fighting against this and smiling, althought at times it can be hard.

Xxx

MsCH
New Member


Date Joined Jan 2012
Total Posts : 2
   Posted 1/22/2012 8:40 PM (GMT -6)   
Has anyone tested you for cluster headaches?

wgrish7
New Member


Date Joined Jan 2012
Total Posts : 2
   Posted 4/13/2012 5:53 PM (GMT -6)   
Wow this is the exact thing that is happening to me. Its been 2 years and I don't even know how its like to be without a huge pain in my head. I feel for you. I am only 14 years old.
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