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autunm
Regular Member


Date Joined Mar 2012
Total Posts : 71
   Posted 3/21/2012 11:28 PM (GMT -6)   
hi everyone.i would just like to introduce myself and say hello.the easiest place to start is to tell you my story.i am 43 years old with 3 children.my headaches started 24 years ago when i was in my late teens.at that stage they were hormonial headaches which i got one week each month with period.after a while they turned into 2 weeks per month.then it was up to 3 weeks per months as i got older.then they came all month every month.this is where my downward spiral started with painkillers.i used to take 8 mysindals per day with no relief.this went on for years and years with lots of visits to my doctor begging him to stop these headaches.to cut a long story short,my chronic headaches turned into chronic migraines.lets just say this has ruined my life and that is an understatement.over the years that followed i tried so many things to help them.nothing worked.9 years ago i had a hystorectomy which stopped the hormonial migraines in their tract.i was still stuck with chronic headaches which were horrible.i have been to 4 neurologists and be put on so many different medications but nothing worked.i started to get on and off migraines again which was brought on by stress.i did physio for one year straight with no luck.went to a pain specialists who injected huge needles into the back of my neck which really hurt but after months of having this done,nothing worked.have had accupunture quite a few times with no luck.i had remedial massage which did not help.i had normal massage which did not help.i did meditation classes which did not help.i saw a few nathrapaths but nothing worked.i tried magnetic bedding which did not help.i tried so many things which cost so much money we did not have and everything failed.modern medicine failed me.all of my scans showed that my brain and neck are fine.i even tried osteopaths with no luck.i have finally accepted that i will suffer these very painful headaches and migraines the rest of my life.i have not been able to work for the last 12 years due to the pain.it has effected my family very badly.i children get upset when i am not well enough to drive them places and cook dinner.my twin sister suffers all of this too.i also suffer other chronic pain in other areas of my body which makes my life a living hell.my life has stopped.i am only 43.i bought a good mattress and pillow for my bed but that has not helped.the headaches never stop,ever.i struggle to drive my kids to school and back each day.i also suffer severe sinus pain in my face which triggers my bad headaches and blows them off the scale.this is a daily event for me.all i want to do is be able to live a half normal life but that is not the case for me.all of this has caused me many years of depression.honestly,i don't know what else to do anymore.i don't have the support of my family and that is hard to deal with.they are all tired of me being sick and in pain all the time.my kids have missed out on so much because of me and i don't know how my husband is going to handle all of this much longer.he would have been better off finding someone health.

My Lovely
Regular Member


Date Joined Feb 2012
Total Posts : 54
   Posted 3/24/2012 4:22 AM (GMT -6)   
aw im sooooooooooo sorry to hear your story :-( i really do feel for you. Just wanted to write something to you.
I am in the early stages of chronic daily migraine with visual disturbance, i have had it every single day, constantly. Ive been suffering for a year + so far, and i don’t know how you have coped, you must be amazing:-). You say you don’t have the support of family etc. I have found this really good:

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

Ive emailed it to all my friends and family, ive also emailed out info on my illness, so they can sit and read in their own time, just so they can try and understand what life is like when you have something so disabling. I also attached a copy of my 1st post on this forum. As too didn’t feel the close people around me understood. I know not everyone is going to get it, but i think if we try our hardest to help people understand the better for you, as you will then have lovely understanding people around you.
Well since i did this, my friends and family have been incredibly supportive :-) they are really trying there hardest to understand me. Maybe give it a go, and if they still don’t get it, then they are not worth your time or spoons ;-)

I even emailed it to my partner lol.

I know too well how not having support from close people family can be so hard and upsetting as this has happened to my mum, she too is very poorly and i am her only support, she has no family who understand, but i have made her do the same as i have, her family will never get it, but she has emailed it to her friends.

Good luck and take care
My lovely - Chronic Daily Migraine with Visual Disturbance/Vertigo

autunm
Regular Member


Date Joined Mar 2012
Total Posts : 71
   Posted 3/24/2012 10:40 PM (GMT -6)   
hi my lovely.thanks for taking the time to reply to my post.i am sorry to hear that you are suffering migraines.they are the most awful things to live with.getting your family and friends to understand your illness was a very good idea.i did try that but my family don'y want to know.some people can show concern and kindness and others just can't.my twin sister and i both suffer chronic migraines and our parents will not except that both their daughters are both sick and in chronic pain.if i try to talk to my mother,she gets snappy and changes the subject.this hurts a lot.i have deprived my own family of a healthy and caring mother and wife and i have to live with that hurt every single day.my 3 kids have never known me to be healthy and it has cause so many problems over the years.they want me to do so much for them and i can't.believe me,this has caused major depression for me.i can't do the things my hubby wants to do and it causes problems.i also suffer chronic pain in my bladder and have major issues there.lets just say going to the beach or bushwalking or long drives is out of the question.i have felt like giving up so many times but i push on.i am glad you are not going through this side of living with chronic migraines.embrace the support you recieve.i wish i could help you not have the migraines but that is up to you to persue in your own way.keep trying and never give up hope that something might help your migraines.i am here for you.keep in touch via this forum.take care. turn

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 3/26/2012 5:31 AM (GMT -6)   
Hi Autumn,

Welcome to Healing well. So sorry to hear about what you are going through and have been going through for so long!!!

I am 58 and have had migraines since my teens and Hemicrania Continua for the last 23 years so I completely understand what daily incessant pain is all about. I brought my son up during this time alone so I really feel for you!!.

However this time has taught me a lot. For years I was taking daily painkillers desperate to stop the pain, little did I know I was doing myself more harm than good!!! I was so upset when I found this out and felt very low, but with the support of my Headache Specialist I was able to stop taking so many painkillers - after all they were not doing all that much I was taking them out of desperation to do something!!!

Once my system was clear of all the excess painkillers I felt better in myself but it did not take away the daily pain. The rule of thumb is that you take painkillers for 2 days in any one week to keep this medication overuse headache away and ride out the rest - easier said than done but I did it!!! So when my Neuro tried different preventative meds they had a better effect finally bring me some relief!!

Is your Neurologist a Headache Specialist?? If not I would strongly urge you to find one that is, even if you have to travel to see them it will be well worth it!!! I did and have never looked back!!!

Has your Neuro ever tried Indomethacin for you?? I now have an implant called Occipital Nerve stimulator (ONS) which has completely changed my quality of life for the better, I cannot tell you how much better I am it's brilliant!!! I am still in pain 24/7 but it is low grade and copable with, I still get attacks but no where near as often or as severe!!!! I feel as I am getting my life back!! This has all been down to a very good Neuro who is a Headache Specialist!!!

Hang in there, 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

autunm
Regular Member


Date Joined Mar 2012
Total Posts : 71
   Posted 3/26/2012 6:12 PM (GMT -6)   
hi annuk.thanks for replying to my post.you sound like you have been through a very difficult time in your life concerning your headaches.yes,i saw 4 neurologists who tried every drug on the market but nothing helped.the last one i saw was the best one in our area.i was the only patient he had ever had that he could not help.i went to him for 2 years.no one ever mentioned anything about a stimulator.i would not have had the money to afford that anyway.i went without just to pay to see him each week.i am ashamed to admit that i am a codeine addict.i have spent 25 years on codeine which does not work.i have tried getting off it 3 times in my life and my body had a complete meltdown and i ended up in hospital each time.my body can't live without it which sounds crazy.after getting off codeine each time which was a nightmare because my chronic migraines went ballistic and even months after not taking the codeine tablets.i always got to the stage of crying all day and night and screaming because the pain was so bad.i skin would feel like it was crawling.i did swap over to tremadol once but that did not work either,it is a painkiller and i went through the year of hell getting off that stuff.the last three weeks of withdrawing,i never slepted and i was so severe that i ended up staying with my parents and i could not look after my kids.i have known for a very long time that pain killers can cause rebound headaches and at this stage of my life,i just have to live with it.suffering sinus pain in my face every day is making my chronic headaches and migraines really bad and i have just booked in to see the only allergist around our area but he is private and i don't really have the money but there is still a 15 month wait just to see him.i am really happy that you have got to a better place in your life concerning your headaches and that makes me feel good knowing that there are people out there who have over come this debilitating condition.take care. turn

HopeForHealing
New Member


Date Joined Mar 2012
Total Posts : 6
   Posted 3/28/2012 10:20 PM (GMT -6)   
I'm so sorry to read about your suffering. I'm new to the forum too - and new to migraines. I've been dealing with a migraine for 10 weeks (tomorrow) and was bedridden for about 6 weeks of that and I cannot imagine years of this kind of pain/symptoms. Like I said, I'm new to it all so I don't have much advice. I'm guessing that since you saw a naturopath, you probably tried dietary supplements? Did you ever get any relief from high doses of magnesium? Or were you ever checked for a potasium deficiency?

I feel for you. I can't imagine what you've gone through. I just want to say, please don't feel guilty for not being there for your family like you want to be. It's not your fault. It sounds like you've tried everything to get well. You obviously care. I am encouraged by how you've not given up! I've been tempted to give up a few times already. Most days I just take life minute by minute. But thank you for not giving up. It encourages me to hang on. We just have to have hope.

autunm
Regular Member


Date Joined Mar 2012
Total Posts : 71
   Posted 3/29/2012 12:03 AM (GMT -6)   
hi hopefor healing.i am glad that i have inspired you not to give up.that is a good thing.yes,i took high doses of maginesium and was checked for potasium deficiency as well.the high does did not work for me and i did not have a potasium deficiency.i tried every natural product on the market but nothing helped.that does not mean that this sort of thing will not help you.as far as i am concerned.you have to try as much as you can with your financial limits.just because i have finally excepted that i will suffer my chronic headaches and migraines the rest of my life does not mean that you should not continue to hope and try new things to help yourself.i think the only thing that has got me through all of this is my kids.now,they are just making everything worse in the pain department due to them all being teenagers.need i say anymore.lol.i am feeling a bit down today because i had a test done and i now suffer a chronic pain issue with my bladder and their is no cure or treatments.just add it to the list of things that are wrong with me.you never get used to pain but you learn to live with it each day somehow.i am here for you to chat to me anytime so if you ever have a bad day,i know you have a lot of those or things are just getting you really down,come to this site and talk to me.i will listen and try to support you as best as i can.i was really nice to talk to you too(cyber chat).only someone else suffering this would understand what we are going through.take care and look after yourself. idea

My Lovely
Regular Member


Date Joined Feb 2012
Total Posts : 54
   Posted 4/5/2012 10:18 AM (GMT -6)   
Hi there, im sooooooooo sorry i didnt get back to you :-( i dont get emails when i write on a post and someone replys etc, silly site lol. So i only relised today, when i was having a look through some old posts.

You say you feel guilty for being unwell the whole of ur kids lifes. I am on the other end of this, my mum is incredibily ill, and has been the whole of my life, im now 26. and i can honestly say your kids will never ever ever be annoyed about you being unwell through their lifes. In my case, its made me a better, more understanding person, i feel its made me more caring and much more sympathetic towards illness'.

My mum too tells me how guilty she feels for not being able to do things with me and my brother. But over the years and me growing up, i am so close to my mum, i try and keep her going as my mums family have no idea what she goes through everyday in severe chronic pain, her family are like urs, they dont want to know, ive evan emailed them trying to explain, but nothing, they are too wrapped up in there own lifes. Not evan my dad supports her.

She too has suffered with depression my whole life. For me Its not the things you cant do eg. going to the park, going for a drive, going on holiday, its the presious time you have with them, just lieing in bed together, she'd plait my hair, you reading them a book. When my mum was on good days, we'd spend time making crafty things with me, and i loved it. I promise they will never feel any resentment towards you.

If they are like me they will look at you and think how amazing you are to have dealt with this pain for so long, what a lovely, supportive mum you are, and how they will know if were well you would do everything with them.

Please dont feel guilty. Take care. Big Hugs :-)
My lovely - Chronic Daily Migraine with Visual Disturbance/Vertigo

autunm
Regular Member


Date Joined Mar 2012
Total Posts : 71
   Posted 4/5/2012 7:25 PM (GMT -6)   
hi my lovely.i am very happy that you are so supportive of your mother's illness and pain.you are a very special person to be able to deal with that situation and i am sure your mother really appreciates it very much.don't worry about me.i will deal with my difficult family situation.value that great relationship with your mother.take care. turn
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