Newbie with a question.

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Newbie with a question.

Post  savannah44 on Fri Jul 05, 2013 12:50 pm

Hello.   I have always suffered with bad headaches, but the past two years have been terrible.  I have  a constant daily headache which turns into migraine
every week and lasts for days.  I am always in pain, and have spent the last 6 months on my bed in agony as one migraine left another one soon came.
I am amazed at how horrendous and unrelenting the pain is.   I had a bad childhood and have been trying to heal, the pain comes up and I cry from the emotional and physical pain which sends me into another spiral of migraines.  There is no let up.   I feel so broken and tired of always being in pain.  I am lonely too, and long for a hug so many times
when I in agony on my bed for hours and days unable to sleep.  Everything the doctor has prescribed gives me bad side effects, so I am stuck.  I am 44 and feel like my life
is over.  No husband, no children, no world much beyond these 4 walls of my flat which feels like a prison.   I long for the health of younger me, feeling strangely envious of her.
If only she knew what pain lay ahead.  I do not think she would believe there could be so much of it.   I have been looking for other migraine sufferers because I feel so lonely with it and it helps to read and share with others who understand.  So here I am.  Newbie looking for friends and advice.  
I would love to know how do you cope with the pain when the medication does not work or cannot be taken.  I try to distract myself but feel drained and exhausted from running form the pain all the time.  I try to be positive and tell myself it will pass and cling on to the small things in life, but they feel so far away now, and I feel trapped in a prison of torture.  I admire all who suffer from this terrible pain, just enduring it takes so much courage.  I know there is no other option most of the time, but feel scared because I feel all out of strength and endurance.  How do you cope with the pain?  What do you do to espcape?  
Sorry to ramble.   I did not expect to write so much.  I would be grateful for any replies.
Thank you

savannah44

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Join date : 2013-07-05

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Re: Newbie with a question.

Post  Erstchay on Fri Jul 05, 2013 2:10 pm

Know exactly how you feel , been there got the tee shirt and still wearing it Great Bg Hugs xxxx

Erstchay

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Re: Newbie with a question.

Post  savannah44 on Fri Jul 05, 2013 2:11 pm

Thanks.  I am in the same bloomin tee shirt!
Great big hugs back xxx

savannah44

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Re: Newbie with a question.

Post  Platypus on Sat Jul 06, 2013 12:27 am

Hi, sorry you are suffering so much. How to deal with the constant pain? I take a page from the 12-steppers and try to live one day at a time. I find that inserting small change into my life gets me out of the "4 walls of my flat are a prison" mentality. So after laying in bed for a while I get up and make some tea. Then I take a bath. If I'm not too exhausted I take a walk. Then lie down some more, maybe now it's easier to sleep. I RSVP for meetups and export them to my google calendar. It doesn't matter whether I go or not, no one's feelings will be hurt if I miss it. If I go I start to make social connections and life becomes more than just my headaches...
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Re: Newbie with a question.

Post  Migrainegirl on Sat Jul 06, 2013 3:28 pm

So sorry it is so bad for you! Lots of virtual hugs.

The main thing is NOT to give up ever. The main preventatives have not worked for many/most of us here so you are not alone. That does not mean there are not other methods to try. Many had had good luck with elimination diets, Botox, vitamin and hormone supplements, and other natural approaches.

Please tell us what you have tried? Can you get an IV to kick off the current bad cycle?
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Re: Newbie with a question.

Post  Dandelion on Mon Jul 08, 2013 6:46 pm

Savannah,

I'm SO sorry that you are in such pain all the time. It sounds like you might have some sort of chronic daily migraine going on.
I've been in a "bad cycle" myself for many months, so I can relate.

As to how to cope: I won't kid you, sometimes I get pretty depressed, but I try not to ever give up hope. I do a lot of "research" online to try to find new options for myself- maybe a new medication, or a new combo of meds, or anything new that's on the market, and new procedures, etc. Sometimes I call my neuro and ask her if I can try something I've read about- and she is pretty good about it usually.

I am also very interested in natural remedies, and take a regimen of vitamins and supplements that are supposed to help.

I came here for the same reason as you- to find people who understand what I'm going through- because most of my friends and relatives just do not "get it"- If I say I've had a migraine for the past 3 weeks, I think they must be thinking that I'm making it up for attention.

Platypus said try to take it - "one day at a time" that is great advice, and I remember my mom saying that to me every time I had to deal with something difficult.

I'm sending you a great big cyber hug.

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Thank you from the newbie with a question

Post  savannah44 on Fri Jul 12, 2013 9:49 am

Thank you for your replies. It means a lot to be welcomed and meet fellow sufferers.

Platypus, thank you for the helpful advice and sharing how you cope. I found it encouraging and helpful learing how you get through and keep on going.
I have to pace myself too, and give myself breaks and try and tell myself that I will get through it, but I live alone so it is very lonely at times. Hugs.

Migrainegirl, thank you for the for hugs. I am sorry that the preventatives have not worked for you either. I have taken amitriptyline, propanol, atenolol, gabapentin,
but all cause me to have anxiety and insomnia. The doctor's have given up on me now. I have seen a neurologist who thinks it could be hormonal, but my doctor disagrees, and has said that there is nothing else for me to try because I do not take well to medication. I have not heard of a IV to stop the bad cycle. What do you take to help cope with the pain? Hugs.

Dandelion, Thank you for your empathy. I am sorry you are going through such a bad cycle too. I dread waking up and wondering how I can cope with another day of pain. I live alone which makes me feel even more lonely, though I know that even when with people, suffering is still lonely. I feel like I am in a war, and I have also done some research. I have found feverfew mentioned, fish oils, 5 htp even, hypnosis etc... and am still confused. I did read in an article about co 10 and 400 mg bit b 2 which I have started taking, but have not felt any difference so far. Sometimes I feel so broken and lonely by the constant pain, and the dread of it returning when it has eased, which it soon does. I feel like I live a torture bunker at the moment and am trying to tell myself that this is not my life, but is hard, and I have so many down days. Sending you hugs.

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Re: Newbie with a question.

Post  Platypus on Sat Jul 13, 2013 12:32 am

Hi Savannah, I live alone too and I can get very isolated. I try to reach out, but it's often my impulse to retreat. How can you be social w/ head crushing pain? Evil or Very Mad Having said that, I am in a local migraine support group and a chronic pain group and they mean the world to me. If you can find a chronic pain or any type of group for people w/ disabilities or illness, I recommend it. These online groups are great too. Checking in is a big part of my day.

-Platy
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Re: Newbie with a question.

Post  dcook60 on Sat Jul 13, 2013 9:47 am

i have chronic daily migraine also, and episodic ones since 1969.  they became daily about 12-15 years ago, and i live on triptans, having tried multiple preventives and botox without help.

i'm trying a new-ish, benign substance you may have heard all the hype regarding.  i don't believe it can HURT anyone.  it's coconut oil.  there are books written about its miracle help for all kinds of things, and i refuse to listen to hype.

BUT my brother has been taking it for a couple of months and he had instant results for the "tingling" in his feet.  other friends of his, in british columbia, have had similar, seemingly wow! results.

i've been taking a tablespoon every morning for two weeks, and have noticed a subtle but, i think, real improvement.  the head pain is still there, of course, but it seems less severe.  also, i have more energy at the end of the day.  i work 30+ hours/week at age 73, and am usually quite whipped at the end of the day.  since taking the oil, i actually have some energy left, and don't crash on the couch at 8 or 9 p.m.  we shall see if this continues.  if so, i won't be without coconut oil!  

don't believe anecedotal evidence for anything; one must test it for oneself.  maybe you'll find the book "the coconut oil miracle" at your local library to get you started on this road.  just a thought, dianne
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Re: Newbie with a question.

Post  savannah44 on Sat Jul 13, 2013 12:42 pm

Hi Platypus,  I understand so well the impuse to retreat.  This is where I am now after reaching out to the wrong people, who could not understand my pain.
I would love to join a migraine and chronic pain support group.  But there is nothing in my area.  No self help groups of any kind.
So I feel even more isolated and lonely.

Hi Dianne,  Thank you for the advice about coconut oil.  I have heard about it being very good for me before but was not aware it could help with migraines.  I am pleased that
you are seeing an improvement.  It sounds very promising.  I hope that it gets better for you.

savannah44

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Re: Newbie with a question.

Post  Erstchay on Sat Jul 13, 2013 1:00 pm

Was interesting to here about coconut oil hopefully it would for you savannha

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Re: Newbie with a question.

Post  Erstchay on Sat Jul 13, 2013 1:01 pm

Even hear sounds better

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Re: Newbie with a question.

Post  savannah44 on Sat Jul 13, 2013 1:04 pm

Thanks Erstchay. I hope it helps you too.

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