I can't do this anymore. I'm so tired of the pain that I just want to die.

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XXchelsieXX
New Member


Date Joined Jun 2013
Total Posts : 6
   Posted 6/28/2013 12:24 AM (GMT -6)   
Hi, my name is Chelsie. I apologize in advance for how long this is going to be. I just really need help and I don't know what to do or where to go. I don't really have anyone to talk to. If anybody could give me some advice or encouragement, I would really appreciate it.

I'm a 21 year old female whose life has become a living hell. A little backround info on me: I first started getting migraines when I was nine years old. I remember the very first migraine I ever had. I honestly thought I was dying, it was horrible. The month that they started was a month where I grew three inches in a matter of weeks. My pediatrician chalked the whole thing up to hormones. To be safe, he sent me to a neurologist who did an MRI, which was normal. My neurologist put me on Amitriptyline as a preventive and Darvocet to take when things got bad. This round of migraines lasted about three months and they went away as suddenly as they had started.

For years, I didn't have any problems. But when I was fourteen, I suddenly started having migraines again. My pediatrician once again put me on Amitriptyline and gave me a referral to a neurologist at Children's Hospital. I tried several different medications, including tryptans, anti-seizure meds, anti-inflammitories, and anti-depressants. My migraines this time around were much worse and much more frequent than when I was nine, and all of the medicines they tried either made my head worse, did nothing at all to help, or had side effects I couldn't tolerate. By the time I was fifteen, my migraines had become a daily thing. I had one all day, everyday. It made school incredibly difficult, and I was absent quite a bit. Because of this, the first neurologist at Children's thought that it was all psychological and that I was using migraines as an excuse to get out of school. This couldn't have been farther from the truth. All I wanted desperately was to have the normal life that a fifteen year old girl should have. I wanted to be able to go to school normally. I wanted to be able to learn and socialize and have a life other than one stuck at home in a dark, quiet room. I even went to talk to a psychologist. She wrote a letter to my neurologist saying that she believed that my migraines were very much real and not a school issue. But, my neurologist still didn't believe and said there was nothing more they could do except give me a referral to the headache clinic of Children's. The headache clinic was more or less the same, they tried on different medications, all of which either made things worse or didn't help. When I was sixteen, they recommended Botox injections. I was extremely uncomfortable with the idea and refused for several months. At this point, the headache clinic also started to believe that it was a school issue and pretty much said, "Well, if things were as bad as you say that they are, then you would be willing to do anything to make it better." This basically guilt tripped me into getting the injections, even though I knew deep down that it was a mistake. I turned out to be right. The only thing the Botox injections gave me was a burning sensation in the injection sites that made my head feel like it was on fire for three months. At this point, the headache clinic also told me there was nothing they could do for me and told me to go back to see my first neurologist from Children's. They did nothing to help me at that point since I wasn't a "typical migraine patient." Finally, when I was 17, I got so fed up with them doing nothing and telling me it was psychological that I just never went back. To add insult to injury, my own dad thought that it was also psychological and just an excuse to get out of school. At one point, he wanted to put me in a psychiatric hospital for it. My mom has been the only one to really believe how much pain I'm in.

I'm 21 now, and I hate my life. I have a migraine all day, every day that ranges anywhere from a 5 to a 9 or even 10. I spend most of my time laying down in my dark, quite bedroom. Eating and drinking is a struggle because of the nausea and vomiting. I have to take Phenergan daily just to be able to keep anything down. I barely graduated from high school, and I haven't been able to start college. I feel like such a failure for being 21 and having yet to start college or get a job. I have yet to find a neurologist who will help me. The last one I saw once asked me if there had been anything that had ever helped my head. I was honest and told him that prescription painkillers that I was prescribed after a knee surgery helped my head and that for the first time in years I finally had some consistent relief. He immediately labeled me a drug seeking patient, even though I never asked him for painkillers. I'm honestly too afraid to ask anyone for the one thing that has ever provided with relief and allowed me to function normally. I am so scared as just being labeled as drug seeking, because I know what it looks like when a 21 year old asks for painkillers. No doctor believes how much pain I am in. I just don't know what to do. I feel like I have tried everything else. I have tried more medications than I can remember, botox, biofeedback, massage therapy, acupuncture, vitamins, natural supplements, OTC meds, special diets. I just want some relief. I'm tired of being in so much pain every day. I can't take this anymore. I want my life back. I want to be able to function like a normal 21 year old should cry

Post Edited (XXchelsieXX) : 6/29/2013 1:07:10 PM (GMT-6)


inf
New Member


Date Joined Jun 2013
Total Posts : 8
   Posted 6/28/2013 4:01 AM (GMT -6)   
  Hello Chelsie.  I just finished reading your post , and must say it sadly sounds just like my mine.  I'm 29 and have had migraines since I was ten.  The horrible thing about migraines, despite what anyone says, is there is no cure.  There is only the search of what will help you cope with them, or at least that is the way it is with me. I've tried almost every medication  known and not known to help reduce the consistancy of migraine to no avail.
 
But one thing I have learned on this hard road is that you can't give up.   If you don't like a neurologist then move on to the next one.  I've gone through two this  year.   Another member has gone through 11 or 12 of them to find the right person, the only person, the ONE PERSON who believes you, and wants to help you.
 
I am sorry you have struggled so long without people not believing you.  I can relate to that too, my co workers used to think I just wanted 3 day holiday when I'd get a migraine and need two days to recover from it. Thankfully my boss was on my side up until he could no deal with the lack of dependability.   My job lasted six years,  and I probably missed at least a year of that in sick days.  (Should send that man flowers)
 
But back to you.    Please don't give up , you have alot of life left to live woman, and you need to fight tooth and claw for the ability to enjoy it migraine free for awhile.  So get on the phone and push those doctors around, and don't let "it's in your head be the answer" when you leave that room.   or "You just want narcotics" to be the last thing someone says about you.
 
You know the truth
 
You need help?    the only person who can really help you is yourself.   Be strong, and if it takes 11 neurologists and a medication cocktail to take away your pain , then do it.
 
 
From someone who has tried everything, all I can give you is a friend.
 
_inf.
 
 

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 6/28/2013 4:36 AM (GMT -6)   
Chelsie,

Welcome to HealingWell.... but so sorry for the numerous issues going on that brought you here..... The main thing being - you are in PAIN and need some help!

I've seen many posts over the years that sounded very familiar to what you've written. As a migraine sufferer myself - I can relate to many, many things that you wrote, too. So - I know all of that doesn't change your situation - but I do want you to know you aren't alone.

My first piece of advice - is to let go of the fear of being labeled a "drug seeker". Or let go of feeling like a failure! Headaches/migraines can be debilitating! Trust me - I know this all too well!

Next -- I'm glad to hear you've got good support w/ your mom. This isn't making excuses for your dad... but he may just be frustrated and not know "how" to handle your situation.... especially because dads/husbands tend to be "fixers" (ie - want to fix everything up and make it better).

I would immediately start trying to find a doctor - be it a new neurologist.... a pain management doctor that treats migraines..... etc. But a doctor that's going to hear your needs.... and will help you get these headaches under control.

I would start keeping a "Headache Diary".... there are so many to choose from... but this one is short and sweet and to the point.... www.headaches.org/pdf/Headache_Diary.pdf Keep at this for awhile... especially to take to a new doctor. The goal of this to look for patterns....

Wow - I'm sorry to cut this off.... but it's 2:30am and I'm so tired that I better head to bed. I'll finish up tomorrow... and hopefully - there will be others that can give you some input. Quick thing, though - I tried botox (nothing, just side effects that made me feel awful)... Last thought: do your HA's correlate w/ your menstrual cycles? Just wondering if there's a hormonal connection.

Take care, Chelsie! More soon; hand in there --Tina
Moderator - Chronic Pain Forum

Post Edited (Blessedx8) : 6/28/2013 3:50:54 AM (GMT-6)


BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 4064
   Posted 6/28/2013 5:40 AM (GMT -6)   
Chelsie,

Welcome to the forum!

I want you to know you are not alone. I have dealt with cluster headaches since highschool. I too have migraines daily, however I am now on a cocktail that keeps the pain down to a 2-3 most days. I take imitrex for the break through pain.

I also ended up going to a therapist to learn how to deal with the daily pain and it helped a lot, actually found out there was trauma in my past that was causing some of the pain.

At anyrate, my cocktail is Topomax 200mg, propananol 40mg 2x day, and cymbalta 60mg, I hope you find a doctor that helps. Not all meds help everyone, but it took a long time to find this combo, maybe a doc will try it for you.

Peace and courage.
Trina
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain; raynauds;complex PTSD; recurring MDD,disassociative disorder;

XXchelsieXX
New Member


Date Joined Jun 2013
Total Posts : 6
   Posted 6/28/2013 3:58 PM (GMT -6)   
Thank you guys for your replies. I can't tell you how much it means to me to finally have found people who can relate to what I'm going through, although I'm also sad to find people who can relate because nobody should have to go through this. But your words of encouragement mean so much to me.

To answer your question, Tina, yes there is a hormonal connection my migraines. about a week before I start my period my head used to start escalating and then get worse once I started my period. I've been on NuvaRing for several years. It has helped with the escalation I used to get beforehand, but unfortunately my migraines still get worse when I start my period. I've been considering stopping my periods all together for it, but I want to get a second opinion from a new neurologist that I'm supposed to see in August before I do.

Lord Zart
New Member


Date Joined Jun 2013
Total Posts : 1
   Posted 6/28/2013 7:01 PM (GMT -6)   
Your post caught my attention. I have been having chronic migraines every waking moment for the past 5 months. After going through several specialists, I have decided that my only real chance for help is going to come from the Diamond Headache Clinic, in Chicago, they are one of the best in the country. I myself am going at the end of July and can't wait to start feeling normal again. I suggest you look into them or one of the other clinics available. Good Luck!!

XXchelsieXX
New Member


Date Joined Jun 2013
Total Posts : 6
   Posted 6/28/2013 8:46 PM (GMT -6)   
Thanks for the suggestion, Lord Zart. I will definitely look into them. Good luck to you as well. I hope everything goes well and that you finally get some relief!

kbvan
New Member


Date Joined Jun 2013
Total Posts : 8
   Posted 6/29/2013 9:34 PM (GMT -6)   
I'm so sorry you are going through this. I have always suffered with migraine but they only became very severe in my 30's.

I have hopes, there are many therapies to try, It's horrific and no one can understand bc they think you "just have a headache." If they only knew...

I would swallow 1000 pills and take 1000 needles to make this stop, We just may have too :)

Our poor brains are just different.

XXchelsieXX
New Member


Date Joined Jun 2013
Total Posts : 6
   Posted 6/30/2013 3:05 AM (GMT -6)   
kbvan -- I'm sorry you are suffering, too. That is so true. I can't tell you how many times I have gotten the "it's just a headache." People just don't understand that a migraine is so much more than just a headache. They don't understand how debilitating migraines are. I have had people tell me that I am just too lazy or exaggerating about how much pain I'm in. They don't understand how hurtful it is when you hear things like that.

And I agree. I would do anything to make this pain stop and have a normal life.

Jo nj
New Member


Date Joined Jul 2013
Total Posts : 4
   Posted 7/1/2013 6:22 PM (GMT -6)   
I have had classical migraines since 11 years old. So does my mom and daughter.
 
XANAX was noted to help migraines in a Readers Digest issue over 20 years ago.  We tried it and GUESS WHAT, IT WORKS FOR US.
 
AS SOON AS THE AURA STARTS WE TAKE A SMALL DOSE OF XANAX (.25 -.50 MG) AND IN about 10 MNUTES THE AURA GOES AWAY. IT APPEARS TO STOP THE MIGRAINE.  SOMETIMES THERE MIGHT BE A LITTLE HEADACHE, BUT NOT MUCH.  IT HAS BEEN A MIRACLE FOR MY FAMILY.
 
I'M NEW TO THIS SITE, BUT PLEASE TELL OTHERS SO THEY MAY NOT HAVE TO SUFFER.
 
LET ME KNOW WHAT YOU THINK.
 
I AM NO LONGER A MIGRAINE SUFFERER. 

XXchelsieXX
New Member


Date Joined Jun 2013
Total Posts : 6
   Posted 7/1/2013 7:57 PM (GMT -6)   
Jo nj -- I have never heard of using Xanax to treat migraines. The only problem for me is, I don't get an aura; so I wouldn't have a way of knowing when things where about to get really bad. Do you think it could work for someone like me if I took it when I already had really bad breakthrough pain happening? Regardless, it is definitely worth a shot and I will look in to it! I have an appointment with a new neurologist in August and will talk to her about it then. Thank you so much for the advice, I really appreciate it! I am so glad to hear that you, your mom, and your daughter are no longer suffering.

Post Edited (XXchelsieXX) : 7/1/2013 7:09:29 PM (GMT-6)


Zymi
New Member


Date Joined Jul 2013
Total Posts : 2
   Posted 7/6/2013 2:06 PM (GMT -6)   
Just want to add something small to all the wonderful advice you have already been given. You might want to take a look at your environment too. I'm not saying that your environment is the cause for all of your problems, but it might have some effect on your ability to have a "free" day.

My wife bough a candle and brought it home and lite it. I got a migraine within 10 or so minutes from the odor. I found that just having the candle in the house was causing me problems. Once the candle was removed, things started looking up. I still get a lot of migraines, and I am still have to take meds - but that instance made me thing about what else in the house could be a problem. (mold, carbon monoxide etc)

Any way, just a thought.

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2021
   Posted 7/6/2013 10:58 PM (GMT -6)   
Hi Chelsie
Sorry you are suffering so much. I too have had a horrible headache, constant now for over thirteen years. I too have tried everything under the sun and nothing helped my pain. I am about to under surgery for an occipital nerve stimulator. You can google that for more info. There are some wonderful success stories with this stimulator. Also there is a facebook group of people who have this stim or looking into it; it is called Occipital and Peripheral nerve stimulation; it's a great support group. Another great group on fb for support is The Many Faces of Migraines. Come and check them out. let me know if you need help to get there. And of course feel free to ask me any questions. My email is in my profile.

Take care
Suzane

XXchelsieXX
New Member


Date Joined Jun 2013
Total Posts : 6
   Posted 7/7/2013 8:42 PM (GMT -6)   
Zymi -- I know for sure that there are certain environmental factors that aggravate my migraines. Certain smells will definitely make things worse. As far as things things like mold and carbon monoxide go, I don't know about those. I will look into getting those things checked.

Suzane -- I'm not sure I'm ready to start looking into surgical options yet. It just seems so extreme and scary and I feel like I haven't exhausted all other possible options yet. But I will check that support group out. I think could use some good support groups right now. Thanks so much for the advice. Good luck with your surgery! I hope it goes well and that everything works out for you.

nspeedracer
Regular Member


Date Joined Feb 2013
Total Posts : 161
   Posted 7/10/2013 1:44 AM (GMT -6)   
have all of you been checked for lyme? needs to be a western blot with NO positive bands or you have it. its what causes my chronic headache n migraines

Jo nj
New Member


Date Joined Jul 2013
Total Posts : 4
   Posted 9/3/2013 10:39 AM (GMT -6)   
xxChelsiexx - The migraine stops for me with Xanax when the aura starts. I rather doubt that it will help you with the headache, but I sincerely hope so. Let me know if you try it. 

Lepoppet
New Member


Date Joined Sep 2013
Total Posts : 2
   Posted 9/3/2013 5:10 PM (GMT -6)   
Chelsie,
Where in the country are you located (city, state). I just had migraine surgery and it changed my life. NO MORE PAIN. I'm sure there's a surgeon someplace near you that you could, at least, have a consultation with. I would be happy to help you research if you like.

http://www.youtube.com/watch?v=UC3rq5fL7uA

MSCS
New Member


Date Joined Sep 2013
Total Posts : 2
   Posted 9/5/2013 3:45 PM (GMT -6)   
Chelsie
Keep looking for a good Dr. sometimes it just takes time. You have a lot of good suggestions here I'd like to make one I didn't read. Have you tried a Chiropractor? That is what finally helped me. I haven't had a bad headache in 10 years. The head ache diary is a great way to track what sets your headaches off. Alexander Loyd PhD has a book called "The Healing Code" you might surprise yourself if you read it. It's on amazon

uoflfan
New Member


Date Joined Sep 2013
Total Posts : 2
   Posted 9/15/2013 2:56 AM (GMT -6)   
Chelsie,
I am so sorry for you and have contemplated dying many times.  Migraines have been a living hell for me for the past 20 years.  I can't take many of the preventatives because my blood pressure is extremely low, I am significantly underweight and some medications which make most people sleepy have the opposite effect on me.  Either because of or in addition to chronic migraines, I have insomnia and depression.  To break the migraine cycle and give me some relief for a couple of weeks, I get botox every 3 months and do short term doses of steroids several times a year (although the side effects of steroids are awful for me - insomnia and nausea).  Fortunately for me, I have a supportive boyfriend, ex-spouse, kids and friends who understand how awful the migraines are.  In fact, both my sisters and brother have migraines as does my daughter.  My grandmother had them her entire life, too.
 
At the recommendation of my neurologist, I recently went to a Headache Institute 250 miles from my home, expecting they would run tests and I'd see a doctor.  Instead, I drove 500 miles round trip to meet with a nurse practitioner for 15 minutes who attributed my migraines to medication overuse.  She prescribed "tapering medications" and about 15 new meds to try, the potential side effects of every single one of them included "dizziness", "depression", "insomnia" and "headache".  Seriously.   They prescriptions were filled by their in-house pharmacy (convenient and a bit suspect).
 
I tried the tapering meds for 5 days during which I not only had a horrible migraine but I was unable to work at my high stress job (attorney) or do anything except lie in bed wide awake feeling like I'd been hit by a train.  I refuse to be a guinea pig for the Headache Institute and will resume Effexor and the rotating injections/zomig nasal spray/lortab with valium, all prescribed by my treating physicians, while I investigate the surgeries that people on this forum have mentioned.  Staying at home all day would drive me crazy and I do not want to go on disability although the NP said I would qualify.  Fortunately, I've met my out-of-pocket so whatever they charged and the prescriptions cost me nothing, except a long drive and 5 days of hell, including doing no work on a case in which I have a hearing this week. 
 
Has anyone had the same or a similar experience with a Headache Institute or Headache Center?  All my friends and family are wondering why on God's earth the Headache Institute would send me home to take all those new meds with no medical monitoring.  They did mail me a note saying "We hope you feel better". 

Post Edited (uoflfan) : 9/15/2013 2:10:56 AM (GMT-6)


uoflfan
New Member


Date Joined Sep 2013
Total Posts : 2
   Posted 9/15/2013 3:16 AM (GMT -6)   
P.S.  You need to do whatever it takes to have a life with some pleasure and I'd echo inf's advice:
 
Be strong, and if it takes 11 neurologists and a medication cocktail to take away your pain , then do it.
 
 
 

Agnesjoan
New Member


Date Joined Sep 2013
Total Posts : 3
   Posted 9/15/2013 5:03 PM (GMT -6)   
If your not start journaling every thing you eat and drink. Make notes about the weather. I have had migraines since 6 years old and I'm 52. One of my nemesis is Sodium Benzoite. He's in every thing from green relish to vitaiams. With any luck you will start seeing patterns. I can have foods other migrainers can't but then I have triggers others don't.

I don't know if scents bother you but for me they are a big trigger. I even police my husbands deodorant. I've found a peppermint shampoo that I can use.
Hope this helps some.
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