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anyone 100% housebound 100% of the time....

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Post  Guest Mon Jan 10, 2011 2:29 pm

I am. Just wondering if anyone else is. I do mean all the time. No going out days. From migraines.

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Post  sailingmuffin Mon Jan 10, 2011 4:56 pm

Hi,

I am, sort of. I had to stop driving due to fainting and now have to rely on my parents, friends to drive me places. I am able to go out, usually something every day, but wish i could get out more. Migraines can be extremely isolating.

Pain free days,
sailingm
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Post  pen Mon Jan 10, 2011 5:02 pm

Had to stop driving. Cant travel at all, and get out maybe once a week for an hour or so, so pretty much but not 100%
Suffice to say, not a life, just existence...

P Evil or Very Mad

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Post  314 Mon Jan 10, 2011 5:47 pm

I can't drive due to vision disturbances from migraine, and for a while couldn't go out much for the same reason. I learned to use a long cane which gave me a bit more freedom.
Last semester my attacks increased and I was no longer able to leave campus, or stray too far from my apartment. I think that will continue next semester, unless I find a preventative that works. I can't go too far from my apartment because I need to be able to get home quickly and easily, and on foot.
I was stuck in my apartment full time for about a month last semester. I had to have friends come in to help me with things and take care of my dogs. I was glad they were so supportive.
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Post  MaryAnneLive Tue Jan 11, 2011 9:02 pm

Gail, I am so sorry to hear that you are having such a rotten time. I was housebound for about a year about 5 years ago. It was rotten. Since then I have had some luck with daily pain meds and got a dog who needs me to take him out no matter how terrible I feel and had a child with the same needs. It helps me get up and going even on days when I don't want to. I hope you have some luck finding ways to help you get up and out. Have you ever tried the long acting pain meds?

Mary Anne
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Post  pen Wed Jan 12, 2011 8:57 am

Not been out since Dec 26. Something gone horribly wrong.
Triptans almost every day and some work many dont.
I have no idea what has happened to me and am scared and confused.
Going out is just not possible any more. Getting out of bed is a challenge.
I relied so much on the triptans, now I am desperate.

P

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Post  Guest Wed Jan 12, 2011 6:35 pm

pen my heart goes out to you. i hear the distress and dispair in your post. i wish i could say or do something for you. all ican think
to do is to tell you that you have been heard. by me. you have my complete empathy. it seems we are kindred spirits. i do no know what else to say. i send you my best. gail

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Post  Guest Wed Jan 12, 2011 6:39 pm

thanyou for your concern. it meant a lot. i tried one long acting med. it did nothing for the pain. it did cause dibilitating nausea.

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Post  cupatea Wed Jan 12, 2011 7:49 pm

I make it out the house for my doctors appts. It takes real effort. Yet as my insurance runs out the end of January, I'm trying to see all my doctors before that.
Aside from that, I'm home.
Just as frustrating is that I'm often awake all night long, or sleeping 2 hours per night. This makes the days and nights one long sit/recline down.
I know I need to exercise but since falling and needing a cane regularly with bad legs, I've back-peddled as far as my exercise is concerned. I know it just makes everything else worse....
Sending loads of compassion and love to you all from San Diego,
xoxo
T
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Post  tortoisegirl Wed Jan 12, 2011 8:12 pm

Gail-Can't respons on your actual topic, but I do want to add something. I've tried literally ever typical type of pain med formulation except Fentanyl, and get nausea from almost all (but not all)...and the severity depends on the med. Eventually settled on Methadone which I don't think causes me any nausea (I get it normally for several reasons, plus severe motion sickness). Everyone reacts differently to each med though, and it can also change over time (I take Oxycodone as needed and it used to never cause nausea, but lately it does, but only in combined with motion).

If its something you want to pursue, I'd definitely try again. Have a good nausea med on hand like dissolving Zofran or a Phenergen suppository. For me, the daily pain meds turned my life around! I have had 24/7 for 5 years, sudden onset. Its called New Daily Persistent Headache (misdiagnosed as migraine for the first few years, which is how I ended up at Rhonda's page). That is if you have a doctor willing to go that route (likely a pain doctor), let you try each med to see what has the least side effects, and increase the dose as needed until you find relief (I have a very high tolerance so there were many meds I thought did nothing but in fact I just needed sadly many times the dose I was started on, and have since built more tolerance). Requires some patience but for the patient who hasn't significantly responded to any other treatments, I don't think it should be ignored (and even more especially when you are disabled by the pain). I have been able to go to school/work throughout my journey, and think one of the main reasons my doctor was wiling to try me on the long acting pain meds was strangely enough my age...in my 20s (quality of life). I think explaining your lac of quality of life to a doctor goes much further than your actual pain level (give examples of what you can and cannot do).

Best wishes and good luck in your journey. Please have hope that you can find some relief soon.

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Post  MaryAnneLive Wed Jan 12, 2011 9:33 pm

I agree about the nausea. Thankfully the daily migs don't give me nausea. But a lot of the pain meds I have tried have given me terrible nausea. I tried SEVERAL before I found the right med at the right dose. Even then, I still have daily pain. Some days it is maybe a 4. It goes up and down, never lower than a two and often up to an 8. But I am not bedridden any more. I was. Without the meds I would not be able to be a mom to my daughter. Maybe it is worth trying again? Do you live in a place where you have the option to see a pain Dr? I know you have been on this forum for many years and I know that you have tried ALL of the other options out there. Maybe a good pain Dr. could give you your life back. Mine gave me mine. It isn't perfect. I still can't have a career. Some days I don't leave the house. but I do a LOT more than I used to.

On the other hand, are you able to enjoy any of the time you do have? Do you have a good hobby? Can you read? (please know that I know you aren't illiterate Smile only wondering if you are able to read for pleasure without too much pain.)

My heart is with you. I have been where you are. I am so sorry. I wish I could do more to help.

Mary Anne
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Post  lissy Thu Jan 13, 2011 4:57 am

I am so sorry you are going so bad Pen. My heart goes out to you. I hope and pray you find something that can bring you relief.

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Post  stephgood Thu Jan 13, 2011 8:28 pm

I was stuck in hermit mode for about 3 & 1/2 years. It is no fun at all. I feel for you, it honestly sucks to stare at the same walls all day long! Do you have a support network of people that come in to visit or just be around? I think that would help greatly. Just having another body in a room sometimes helps the loneliness. I know that isn't just the problem with being stuck in. I just urge you to have visitors.
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Post  pen Fri Jan 14, 2011 5:10 am

lissy wrote:I am so sorry you are going so bad Pen. My heart goes out to you. I hope and pray you find something that can bring you relief. Lissy

Aw Lissy, that's kind of you. Thank you. I dont know what has gone wrong. I wasn't as bad as this in November.
Nothing new to try, and neuro seems out of ideas. Just living on Triptans and OTC.
Thought I was so bad on one every 3 days, but everyday/other day.....
Just goes to show, you never know when you are well off...

Hope everyone is having a reasonable day today. Good to be back...

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Post  Cathy Fri Jan 14, 2011 1:08 pm

I feel so bad for all of you who can't get out at all. Sad I miss out on a lot but I'm not completely home bound and manage most days to push on as long as I have my painkillers.

It makes me realize how lucky I am that I can still function. My heart goes out to those of you who are completely disabled by the pain.

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Post  02R96 Fri Jan 14, 2011 10:41 pm

Last summer I did not leave my house for about a week and a half due to CDH. My sleep cycles were messed up too as I just slept whenever. I actually lost track of the day of the week and date.
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Post  pen Sat Jan 15, 2011 4:45 am

I did get out for 2 hours on Thursday. That was the first time since a visit to my son on Dec 26. Not been out yesterday and wont be today.
I get so sick of the house I loved so much. I begins to feel like a sanctuary and prison all in one....


Crying or Very sad

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Post  Paradox Sat Jan 15, 2011 1:00 pm

Last year after battling these since my teens ( I'm now 51) I said phooey to the theory that narcotics make it worse. I found a neurologist who is also certified in pain management.

I'm now on daily oxycontin and vicoden. I'm no longer in danger of losing my job due to absenteeism. And in fact today am fussing with my husband because I want us to go out and do SOMETHING, anything...I'm bored.

Daily pain meds have their own side effects and drawbacks. And, I am still never without pain, BUT it is a tolerable 2/3. And I have my life back.
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Post  Jewishmother Sat Jan 15, 2011 2:38 pm

Going out of the house means exposing myself to my triggers - if I stay home all day I have a 50-50 chance of not having a migraine that day..........If I go out I am assured of having one. It is a balancing act that we all perform every day my friends. Yesterday I stayed in all day just to try and give myself a break - today I had to get out of the house for my emotional health..........it is day by day and does keep a lot of us from living "normal" lives. So glad we have each other to talk to! Leslie
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Post  sherri b Sat Jan 15, 2011 6:29 pm

I am on a triptan everyday. I have been having them dailly ! Don't know what is going on. I am considering asking for a steroid again, maybe that would get me out of the cycle.

I do get out, but then once I am out, I feel like I jsut want to run back home again, maybe anxiety or something..... or when I get out I realize how bad I hurt, I don't know.....

I just want a normal life! Hard to watch others being normal and having fun,,, just discouraged because Had to cancel out plans again today Sad so sad and depressed tonight.

Ok, I'm rambling on, and on, getting off here for the night. Sleep
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Post  pen Sun Jan 16, 2011 4:58 am

Hard to watch others being normal and having fun

Oh I hear you Sherri, it is so hard. I look out of my window and see people just strolling up the road.
Some really rushing, cars going by, children on their way to school. People just being normal and taking it all for granted (and why not?)
I feel envious. I want what they have.

I too am on almost daily triptan, not managed more than a day without since Christmas.
It is the pits, and so depressing.

I have no idea what is doing this to me; to you.
More research is need on the cause.
More meds are helpful of course, but the cause needs to be found.

Given the varience of us all, there has to be something we all share.
But for now, I think we have as much chance of finding it ourselves as wishing and hoping for the research.
Whenver I enquire I am told its lack of funding.

Migraine is a HUGE problem, how can they not provide funding.
Do they not know it is a living Hell? Well we can tell them.

I know of someone who survived cancer but still has migraines.
She said the cancer was the easy bit. She knew she night die, but if she lived she would still have her pain to live with.

I think we are too stalwart, we need to kick and scream more.
Perhaps THAT is why they dont listen to us.
We are too nice, and dont kick enough ass...

Sorry, rambling, but as I sit here almost every day, your comment really touched a chord.

Hope you get to go out today..I know I wont....

pen Mad

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Post  Cathy Sun Jan 16, 2011 6:39 am

I find it has been me much less empathetic to other people's problems. The things people complain about amazes me. I listen to them but am thinking I would be SO grateful if those were my only problems. I try to understand that to them, their problems are huge.

Over the years I have missed so many things with my children - concerts they were in at school, boy scout award ceremonies, vacations, etc. They never had a time when I wasn't spending a few days a week on the sofa with my head packed in ice. Not fair to them either.

People don't know how good they have it when they are migraine free. Walk in our shoes for one week and it would wake them up to how wonderful their life is.

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Post  mxgo Sun Jan 16, 2011 7:51 am

pen said:
I know of someone who survived cancer but still has migraines.
She said the cancer was the easy bit. She knew she night die, but if she lived she would still have her pain to live with.

That is what I thought, when they told me there was a chance that the kidney cancer could be stage four. I was told on a bad headache day, when it took all my energy to drive to the doctor's office. I was not stage four.

Martin
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Post  Guest Sun Jan 16, 2011 12:37 pm

I am reading a book called Breaking the Headache Cycle. Here is a line from this book: The WHO published a study in 1997 called The Global Burden of Disease Study in which chronic migraine is ranked in the top four disabling medical conditions-together with quardriplegia, active psychosis, and depression. So my question is why is it being ignored. Is is because they know they have no answers.......

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Post  pen Sun Jan 16, 2011 1:13 pm

Maybe so Gail, but once there was no answer to cancer, to Diabetes, to TB....I could go on.
Research, and that means money, and until we can feel well enough to shout loud enough, there wont be enough research.

Look at the difference Michael J Fox has made for Parkinson's sufferers.
We have celebrities with migraine, but they try to hide it, so that they will get work.
Parkinson's has physical attributes, so much harder to conceal.
We (most of the time) look "normal" and bear no visible scars....
This is to our detriment.

P Sad

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