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migraine/body paralyzed/no migraine???
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migraine/body paralyzed/no migraine???

i had a very very very bad migraine last night then an hour later woke up in the middle of the night with the same migraine couldnt move at all. felt like someone was sitting on my head. my entire body was paralyzed. i tried to move my legs and arms but i couldnt. then i went back to sleep because i wanted it to pass. so then i woke up an hour later with no headache for the first time without a headache in 15 months... but my body was numb with tingles.. but still could not move at all. i felt so weird. went back to bed woke up 8 hours later and i was fine. well back to my every day "5" headache. what happened???????!!!!! my neurologist is on vacation for a week what do i do?????????? pleaseeee help
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Avatar_f_tn
It's wonderful for me to find you also.  So sorry to hear that nothing has really helped your migraines so far.  

Let me ask, does the doctor who has given you the nerve block and trigger point injections give them across your forehead, in your temples, jaws, back of head, neck and shoulders?  Many doctors don't know how to do it in all those areas.  And it really matters.  Also, I had no reaction at all from my first Botox injections, but now that the doctor gives me 225 units, it has given me great relief.  You must find out.

Also have you tried the Butran Patch?  It gives a very low dose of opiates 24/7 with no side effects, at least at the lowest dose of 5 mcg.  Ask for that if no one has prescribed it to you.   It does help.

I had no benefit or bad side effects from every preventative medication there is.  But I do get relief from an herbal medicine called Petadolex which you can find on-line.  Studies have shown that It has reduced migraines by 62% and is approved by the German government who does check all herbal medications which the US does not.

How long ago did you have your stroke and what side of the brain was it on?  I would guess it was on your right side since you didn't have any aphasia.

With all the help that I've gotten, I can now schedule 2 or 3 short things a day, but only one big thing a day.  And as I approach the date of my botox injections, I often am bedridden most of several weeks until I've had the injections and they have taken effect. I have to work to keep my health insurance which is through my company, but just giving a 2-hour class gives me far worse migraines and often leads me to the ER.  I cannot travel in the car more than 2 hours or I get severe migraines.  So my life is very limited.

I do not have trouble concentrating,  My vocal chords have just stopped knowing how to work, so they think that speech therapy should bring my voice back so it's not raspy and husky.  A real problem for my training work.

Yes, this was my first stroke.  It was entirely unexpected.  Was not from a clot, but was caused by a carotid artery dissection, meaning the artery just split apart sending too much blood into the brain.

It could have been a lot worse though.  I was told that I could have been paralyzed and not able to speak.  Still the limited nature of my life still makes me resentful.

It's so great to have someone else who shares close to the same problems.  It's helpful to hear from someone else who has been through it,

I so so appreciate you.

Sara
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Avatar_f_tn
Hi Mary,

It sounds very likely that you had a TIA or a very small stroke.  That means that you have I believe, a one in three chance of having a full stroke.

See a doctor right away to have it diagnosed and you may need to avoid that full stroke from happening.  I had one and am still suffering a great deal from it.  And am just very very lucky that I can speak and am not paralyzed for the rest of my life--so my neurologist told me.  So strokes are nothing to fool with.  They can even kill you.

Wish you well.

Sara
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Avatar_f_tn
i already had a stroke due to a migraine .... so i had another one...... ?????.im on so many medications... my doctor is on vacation should i call his office tomorrow and say its an emergency and that i need to speak with him? i mean how sure are you that it is a tia or a stroke???
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Avatar_f_tn
Hi Mary,

Your doctor will still be on vacation, but they always have another doctor filling in for them.
I would call his office, even the emergency off hours number, and describe to them what happened to you and ask them if you need immediate medical care.  Maybe you don't need to rush right in.  I really don't know, but I would definately find out the answer.

Sorry to hear that you already had a stroke.  I'm interested if you've had any lasting disabilities like I have.

Good luck.
Sara


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Avatar_f_tn
i called the office and the two doctors filling in for him said they have no idea what it was and it could have been a tia but they dont want to tell me until my regular doctor gets back... ughhh!!!! thats not a good answer... they told me to take vicodin until then... oh my god....
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Avatar_f_tn
Mary,
Then it sounds like it can wait.  That's good that you got the okay to wait from the doctors.  Then when your doctor comes back, he can advise you.  

Do you have any disabilities from your previous stroke?  I would really like to know.  Many young people do have strokes, although it's more unusual.

Do take care and let me know.

Sara
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Avatar_f_tn
my doctor actually emailed me because he heard from the two other doctors about this... he says he wants me to see a stroke specialist... ive never heard a stroke specialist but hopefully they can get whatever thia is under control...
i have a tremor and a little memory loss and my migraine has not left me since i had the stroke... what about you?
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Avatar_f_tn
Mary,
That's great that you will be seeing a "stroke specialist".  I've never heard of it either.  

I have weakness on my right side, including my leg, arm, and hand.  Have difficulty even typing and hand writing is almost impossible.  Plus my biggest deficit is my continuing migraines 24/7 which the doctor thought was caused by my stroke. But I've had a lot of treatment for it including nerve block, trigger point and Botox injections continually, plus a Butrans patch and other medications.  So now I've got mild headaches most of time compared to severe 24/7 ones before.  But I can't do very much or my migraines get severe.  So I'm quite disabled.  Plus my vocal chords have been getting worse 3 years later after my stroke.  But the otolaryngologist who scoped my vocal chords said that it was from my stroke, even with the time gap, and said that he sees this a lot from strokes.  Plus I've got abnormal hearing loss--maybe from my stroke?  Another major problem is that ever since my stroke I've needed 12 hours of sleep a night, or my migraines get terrible!!  My aphasia is mostly gone which was severe after my stroke.

But maybe I will be able to get better some time in the future.  I should feel more grateful because one of my neurologists going over the CT Scans said that if I hadn't been as young as I was AND in particular if my circulatory system had not increased so much on the opposite side of my stroke that I would have been paraylzed and not able to speak.  

How bad are your migraines following your stroke?  One doctor on another medical website said that he had never seen migraines following a stroke, but I've run across a lot of people on these sites who have had it happen to them and found it in some medical literature on-line.  I've got top-notch neurologists (all 5 of them) all from the University of Michigan, including some of them in their specialized Pain Clinic.

So there is a lot of help out there if you need it for your migraines.   Are you able to work or go to school?

Thanks so much for responding.  I do greatly appreciate it.  Don't feel like you have to write back so much as I just did.

Sara
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Avatar_f_tn
i sleep a lot too and havent gotten rid of my migraine since the stroke either its awful isnt it... i also zone out a lot too. do you have trouble concentrating now? ive tried the nerve blocks and botox did not help :(  im so sorry you had a lot of issues after your stroke thats terrible. i had to leave college because of the stroke ...and i started a job but i quit after the TIA that i think happened a few days ago... (this posting) i may be getting the neurostimulator not sure yet. i have one of the top doctor in new york but he seems to be running out of ideas with me. so i may need to venture out. ive seen 11 neurologists in new york.... my migraines are awful! ive tried over 100 medications nerve blockers botox vicodin nothing works..  i live in my bedroom and i am only able to do one activity a day. such as a doctor apt a day or one outing like a vet apt or grocery run. but thats it i get tired. im very weak as well. im always tired. wanting to sleep 24/7. i dont i try to move around but its just so hard with the migraines constantly. you know how it is, you have it too.  im glad i have someone to talk to about this.. no one knows what it is like after a stroke with the migraines and feeling tired and weak most of the time.. its nice... not that its nice that it happened to you but its nice to talk to you...

you cant speak that much? what part of the brain did your stroke effect? do you have any of the risk factors of stroke or did it just come out of no where? was this your first one?

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Avatar_f_tn
It's wonderful for me to find you also.  So sorry to hear that nothing has really helped your migraines so far.  

Let me ask, does the doctor who has given you the nerve block and trigger point injections give them across your forehead, in your temples, jaws, back of head, neck and shoulders?  Many doctors don't know how to do it in all those areas.  And it really matters.  Also, I had no reaction at all from my first Botox injections, but now that the doctor gives me 225 units, it has given me great relief.  You must find out.

Also have you tried the Butran Patch?  It gives a very low dose of opiates 24/7 with no side effects, at least at the lowest dose of 5 mcg.  Ask for that if no one has prescribed it to you.   It does help.

I had no benefit or bad side effects from every preventative medication there is.  But I do get relief from an herbal medicine called Petadolex which you can find on-line.  Studies have shown that It has reduced migraines by 62% and is approved by the German government who does check all herbal medications which the US does not.

How long ago did you have your stroke and what side of the brain was it on?  I would guess it was on your right side since you didn't have any aphasia.

With all the help that I've gotten, I can now schedule 2 or 3 short things a day, but only one big thing a day.  And as I approach the date of my botox injections, I often am bedridden most of several weeks until I've had the injections and they have taken effect. I have to work to keep my health insurance which is through my company, but just giving a 2-hour class gives me far worse migraines and often leads me to the ER.  I cannot travel in the car more than 2 hours or I get severe migraines.  So my life is very limited.

I do not have trouble concentrating,  My vocal chords have just stopped knowing how to work, so they think that speech therapy should bring my voice back so it's not raspy and husky.  A real problem for my training work.

Yes, this was my first stroke.  It was entirely unexpected.  Was not from a clot, but was caused by a carotid artery dissection, meaning the artery just split apart sending too much blood into the brain.

It could have been a lot worse though.  I was told that I could have been paralyzed and not able to speak.  Still the limited nature of my life still makes me resentful.

It's so great to have someone else who shares close to the same problems.  It's helpful to hear from someone else who has been through it,

I so so appreciate you.

Sara
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Avatar_f_tn
yes i get the nerve block shots in all those places. when i got the botox it actually made my migraines worse. i cant use the butran patch because i have really bad asthma and i have weird episodes where i lose consciousness. never tried any herbal meds. i will look it up and ask my doctor about it. i have to be very careful about what i take just because i have allergies to a lot of things and im on a lot of medications.  yes my stroke was on the right side. cerebellum. traveling in cars, oh forget that... thats to much. your doing a lot for what you have been through. i couldnt do that. so you doing all of that is amazing. your support system must be great. wow completely paralyzed and not being able to speak? cant believe that. good thing that did not happen. and that you can get your speaking ability back.

did you have migraines before your stroke happened? or did you just have a really bad migraine and then the stroke happened? or was the stroke not related to a migraine at all and now after your stroke you have really bad migraines?

Ive always had bad migraines.the kind of migraines where i have aura then left arm face and tongue numbness then the awful headache. so it was leading to a stroke. no one could ever control the migraine.

do you have different types of migraines? like every day its a different pain? im so nervous to be alone and what to expect. my balance is so bad when i get a bad headache and i live in manhattan so i take the subways a lot. and im worried im going to fall into tracks. or fall on the street and no one is going to know what is happening. its kind of embarrassing. its like i black out for a minute and get dizzy and get an even worse headache.

im sorry you have been through so much :(
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Avatar_f_tn
Mary,
I am so sorry that you have this much trouble at such a young age.  Having such bad migraines for so long and then a stroke.   And I am truly sorry that nothing has helped your migraines.   You don't have the benefit of what has helped me.  But you're wrong--I really can't do much. I don't do the training very often. Mostly I work on the computer for my company.

How long ago was your stroke?  Your migraines may get a lot better if you just had the stroke a short time ago.  It could just be your recuperating time along with the weakness and fatigue.  It does take some time for the body to get back again.  The first year, I did not do much of anything besides going to a ton of doctor appointments and 10x more physical therapy, speech therapy and occupational therapy appointments.  Remember my stroke was over 3.5 years ago.

Don't know if you want to hear all this.  Feel free to skip the next couple paragraphs.  I have a long history of bad migraines, I believe hormonal in nature.  I always took Esgic (similar to Fiorcet) once or twice a month to always be able to function.  But for the 3 months or so before my stroke, I had a lot more bad migraines--looking back I may have been having rebound headaches not understanding about them.

Then I suddenly got the worst migraine of my life which no pain pill would touch.  And it was completely different than any I had ever had before--not just in my eye area, but in the back, sides of my head and elsewhere on the front of my face.  This is when my neurologist thought that my carotid artery started to split open.  I was mostly bedridden for about 3 weeks, so that I had to cancel going to my sister's wedding out of state.  Then I woke up paralyzed which later went away.   When I got up, I could not say what I wanted to and even heard myself speaking gibberish.  The stroke affected my judgement.  Normally I am very tuned in to my body, but I didn't feel anything was wrong with me, although I did tell my husband when he came home.  He said that I needed to go to the ER.  But I kept doing other things until my husband forced me to go.  My migraine got even worse.  If you want to tell me about your experience having a stroke, I would like to hear about it.

My pain is mostly above my eye in the socket next to my nose on one side or the other, until it gets worse, then it's on both sides and other places on my head.

My stroke problems are not the only ones that I have which include fibromyalgia, acid reflux, asthma, back problems, osteoporosis, high blood pressure, kidney failure, and more. LOL :)  And additional stroke problems are no appetite and difficulty swallowing.  Plus my stroke has made it next to impossible to eat any fruit due to my face screwing up worse than it used to be to eat a lemon.

I'm so sorry to hear about your balance problems.  Yes, it must be scary for you.  At least you don't live where you need to be driving which would be even more dangerous.  The neurostimulator may be good for you.  It doesn't sound like major surgery at all.  I know that something in time will help you.

I look forward to hearing more about you.

Sara
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Oh wow sara that is incredible. we both have the same migraine now. behind the eyes neck to my nose back of the head and both sides. isnt that strange. hmm. and i just meant you have come so far as from not really speaking to speaking a little and your doing more then you could. its progress. you and i both have made it through and have made a lot of progress. we were lucky in ways. even though its rough in parts. so you didnt make it to your sisters wedding? thats so sad... how are they controlling your strokes now? i mean how can doctors really control strokes and make sure another one doesnt happen again? ...

your stroke sounds a little different then mine. i was sitting down and all of sudden i hear this high pitched sound in my ears and then i black out for a few seconds. then i wake up and my body isnt doing what i want it to do. i remember trying to reach for my handbag to call my mother and i couldnt get my right arm to do it because i was so off balance.  then i went to the bathroom walking off balance. my body felt so weird and i felt like i was looking at myself... closed my eyes for maybe 5-10 minutes im not sure how long felt like forever until it passed. and then i felt like my body was hit by a truck with tiredness.

my neurologist is sending me to do biofeedback as well which i dont think is going to work.. and hes also going to try a few new medications. while im waiting for the stimulator process to happen. i feel there is nothing that is ever going to fix this migraine. its just so awful. the pain is so debilitating i just love to sleep.
when you were little and i mean through your childhood did you ever have moments where you would have a weird feeling in your body or a weird numbness pain in your arm? i think that ive been having TIAs since i was little. and i think im going to have this stroke guy confirm it....

i have acid reflux, asthma, back problems, scoliosis, high blood pressure,pfo closed, breast cancer in family heart disease in family stroke in family and many more. im the genetic lottery!! haha!!!!


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Avatar_f_tn
Mary,

Question #1:  I know that my emails have been really long, but please tell me how long ago your stroke was.  It may just be too soon for your migraine to go away.  That's why I would like to know.

How long have you been treated for your migraines?  I'm sure that they will find something to help you.  The neurostimulator or some new medication.  My neurologist advised me to get biofeedback initially.  I had 2 appointments which were mostly just counseling at my own expense since it was billed as psychological expense.  I got disgusted and quit.  Then a couple years later, I asked my neurologist again about trying it.  His response was that my migraines were too intense for him to think that it would help me.  But everything is worth a try.

No, I didn't have moments like you describe in my childhood.  I also have family history of breast cancer, stroke and heart disease just like you.  

My stroke could have been just like yours, because I was sleeping when it happened.

I'm going to send you a separate listing of the risk factors and things you do to prevent another stroke.  

Question #2:  Did you ever have migraines before your stroke, the way that they are now since your stroke?  I didn't.
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Mary,
Since you asked, here is the list of things that can increase your risk or be done to avoid another stroke.  One thing it does not mention, is many are given coumadin or something like it after a stroke to prevent a future one.  I took it for 3 months.  A friend of mine has to take it for life.

Risk factors
By Mayo Clinic staff

Many factors can increase your risk of a stroke. A number of these factors can also increase your chances of having a heart attack. Stroke risk factors include:

·  Personal or family history of stroke, heart attack
   Being age 55 or older.
   High blood pressure — risk of stroke begins to increase at blood pressure readings higher than 115/75 millimeters of mercury (mm Hg). Your doctor will help you decide on a target blood pressure based on your age, whether you have diabetes and other factors.

·   High cholesterol — a total cholesterol level above 200 milligrams per deciliter (mg/dL), or 5.2 millimoles per liter (mmol/L).

·   Cigarette smoking or exposure to secondhand smoke.

·   Diabetes.

·   Being overweight (body mass index of 25 to 29) or obese (body mass index of 30 or higher).

·   Physical inactivity.

·   Cardiiovascular disease, including heart failure, a heart defect, heart infection, or abnormal heart rhythm.

·    Use of birth control pills or hormone therapies that include estrogen.

·    Heavy or binge drinking.

·    Use of illicit drugs such as cocaine and methamphetamines.

.    Eat a diet rich in fruits and vegetables. A diet containing five or more daily servings of fruits or vegetables may reduce your risk of stroke.

Because the risk of stroke increases with age, and women tend to live longer than men, more women than men have strokes and die of them each year.

I personally have personal and family history, over 55 years, (my high blood pressure is controlled), high cholesterol but cannot take Statins or Zetia to control it, no physical inactivity without my migraines getting severe, and cannot eat fruit since my stroke without getting such tension that it sets off my migraines. Vegetables are a challenge to eat because I only have an appetite for chocolate and sugar.  (I am a very low weight since my stroke.)  I do take estrogen (thank God) which I am only given because my stroke was not a clot type of stroke.

Was yours from a clot or was it a bleed?  Or was it a hemmorhagic one?

The reason I ask is because most eschemic strokes are from clots and those having had them have I believe a 25% chance of having another one in the next 5 years.  With the dissection stroke like I had, my risk is 1% a year for the next 10 years.  

I don't worry a whole lot about my cholesterol because my CT scan of my heart showed zero plaques and my carotid artery ultrasounds look good.  10 years ago I placed in the top 5% of those on the treadmill test.  And my heart saved me during my stroke.  That is my ONLY good organ I think.

Hope that this is helpful to you,
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Avatar_f_tn
my stroke was february 2011. i have been treated for migraines ever since i was 10 or 11 years old im almost 22. i looked up biofeedback and it looks kind of weird. i dont really know if it will help me. it just looks like it will help me relax. and honestly im very relaxed. its kind of what i do all day anyway. so why pay a ton of money for someone help me to do it. i mean im going to try it and see what happens but i doubt it will work. and yes i agree my migraines are to intense for it to help me. my doctor has completely given up on me and is just sending me to different people to try to get me away from him to kill time while im fighting the insurance company for the stimulator. my stroke was caused either by my migraines or by my pfo. doctors are not sure. they did not find any clots. i had a large pfo. which they closed. but now that the pfo is closed and im still having weird symptoms it was more likely caused by migraines

i never had migraines like this.ever. the stroke changed my migraines. before i just had the aura left arm left face and tongue balance problem confusion and vomiting and migraine maybe once a month and that was it. .. what about you?
i cant have estrogen either fruits and vegetables i can have. the stroke i had was from a clot. it was a right hemisphere cerebellar wedge infarction or something like that. it was an eschemic stroke
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wait you do take estrogen? i thought that it is bad to... many doctors have told me absolutely not too..
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Avatar_f_tn
My doctors were in favor of me taking estrogen ONLY because my stroke was not caused by a blood clot. Yes, the estrogen does increase my risk for stroke, but no more than for another woman my age taking estrogen.  I needed it so badly to save my quality of life, that I felt I had to have it.

I do take it by a patch which bypasses the liver.

Sara
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Avatar_f_tn
Hi Mary,

If you had your stroke over a year ago, you have been suffering for quite awhile.  I am so sorry. Were your migraines controlled fairly well before you had the stroke?

I would be interested if the biofeedback does help you.  I have found that if I visualize stretching my forehead out, perhaps raising my eyebrows just slightly, that I can relax my migraine and help it when it's not too bad.

I really hope that you can get the okay from your insurance company soon for your neurostimulator.  I had to fight my insurance company to get the Botox injections covered.  Once I had exhausted my fight with the insurance company, then we petitioned the State insurance commission to reverse the insurance company's decision and won, but it took almost a year.  I got my previous Botox injections reimbursed by the insurance company.

Mine was also an eschemic stroke, but only 5% of the total strokes are carotid artery dissection strokes like mine.  They are the most common strokes in people 30-60 years old.

And I'm so sorry, but i don't know what a pfo is?

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Avatar_f_tn
at least your insurance company is paying for it thats good. a pfo is a hole in your heart. were you ever checked for it? most people with migraine have a pfo. this guy says it all - http://www.pfodoctor.org/
i had my pfo closed by him. anyways i saw the stroke specialist. he is making me do an MRI the 27th to see if any event happened. which is good i guess. as far as migraines go nothing changed still in a ton of pain he thinks that those weird episodes where i black out and go numb and are just part of my migraine. but that seems a bit extreme so i may want another opinion just because that seems dangerous to have. i will never be able to drive or do anything that i could endanger anyone or myself because i could just black out because of a migraine? doesnt make sense...
how are you? hows your migraine... any new medications?
hope all is well!
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Avatar_f_tn
I think that it's good that you are getting an MRI.  Yes, it does seem extreme that your symptoms are from your migraine, but I see a lot of other posts where people have such extreme symptoms which their doctors have said are due to migraines.

I had my heart checked out very thorougly in 2002 and then every check that the cardiologists could think of after my stroke.  I've seen 3 separate cardiologists, all in different specialties since my stroke.  Plus I've had carotid artery ultrasounds and a CT scan of my heart.  But I will ask about it at my annual cardiology appt.

I had another 3 days of a severe migraine this past week.  I think it was from a change in my estrogen levels--again.  I slept 20 hours during a 21-hour time period.  I missed a symphony that we only attend about once a year and this one was my favorite sympathy from childhood.  What a disappointment.  The others I could have easily missed.

Then the very next morning I got a call from the hospice place telling me that my mother had a number of signs of death.  They had to give her Haldol twice in the night (an anti-psychotic I believe).  Then she woke up with pain everywhere, which she has never been in pain during hospice.  So then she was given Morphine.  Other signs as well.  So I went early in the morning and stayed until 7:30 p.m., sleeping a lot in my mother's room with still fighting the migraine.  

My mother is still "active in dying", but don't know exactly when.  This morning I had to get up to do a training--a total of 6 hours with driving, then visited my mother.  I repeat the same thing tomorrow.  I have absolutely no LIFE.

Don't know if I mentioned it previously, but the ONLY reason why I continue to work, even though I really enjoy it, is because I need to keep my health insurance which is through my company.  Right now I pay about $20,000 to my insurance company and the medical bills that they pay are over $200,000 a year.  That would bankrupt us fairly soon.  And what if my brain aneurysm needed surgery or I got cancer--MEGA bucks.  A good percentage of bankruptcies are from medical expenses even when people have health insurance!!!

So yes, I'm still struggling, but I will get a higher dose pain patch called Butran which gives a low amount of opiates 24/7.  

Sorry to be such a complainer.  But I think that you get it.  I appreciate that I no longer have severe migraines 24/7, but I've really had no life for almost 4 years.  The last 2 years my mother has been in hospice where I've visited her almost every day.  Not much quality of life for her either.

I'm so sorry to complain so much this time.  I hope that you will still write to me.  I will be really interested to hear what they find with your MRI and what steps are being taken to treat you.

Sara
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im so sorry to hear about your mother. shes lucky to have you. its nice that you visit her, esp every day. did your mother have the same kind of migraine problems that you have? before she went into the hospice. wow 6 hour driving! how could you do that!!!!! you poor thing, your head must be killing you tonight. make sure you get lots of rest tonight, more sleep the better. i mean its good that you work so that way the insurance company will pay all of that but the amount of time you spend on driving isnt helping your issue you know what i mean.... or working in general.... what would happen if you went on disability? i mean im seriously considering it if i dont get fixed by this stimulator i have no choice. i live in bed. theres no life in me and all i really need money for is food and for like a roof over my head you know.. and my meds so i dont die. other then that theres nothing else anyone can do.... i mean its what two years later and ...nothing!
im sorry that you have to hear me complain!!! ha ha tonight has been rough, i feel like my head is going to pop it hurts so bad.
hope you are getting some sleep!
mary
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Avatar_f_tn
Mary,
It sounds like you do understand what kind of lives both of us live.  Don't wait with applying for disability or you may not be eligible any longer.  Look into it now, even though you might have to wait for the neurostimulator.  

If I go on disability, then I lose my business and lose my health insurance.  You're not the first person to suggest that to me.

Sorry I misled you about the driving.  I wrote, "...a total of 6 hours with driving,"  I meant 6 hours including the driving which was 3 total hours of driving.  It actually takes longer than 6 hours now that I count up everything which is too much active activity for me in a day.

But I canceled the training today for the first time ever on the same day.  In 24 years of having this business I've only canceled 3 times due to the flu, a bad cold, and my migraines since the stroke.  But I got a call this morning that my mother was very close to death.  So I canceled and spent the whole day with her while she was either sleeping or was in a daze.   I felt that I should have done the training after all.  

I think that you are remarkable for your reasonable attitude about your situation.  You are young.  The body heals much better in those that are younger.  I know that you are going to get better.  It sounds like it is from your stroke, which the body heals in time.  The person who wrote a book on her stroke, talked about her terrific progress over the years--7 years later.  

And you have a good chance with the neurostimulator.  But if not, don't give up.  And so many are suffering from migraines, there's got to be something new coming up in the future.  

Sara


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Im not sure my parents want me on disability. they dont really understand what its like to be living in pain all the time even though they see me in bed. they think its easy to just get up and go but its not. they want me to be healthy and think that im going to be better. which im not saying i wont be. im just saying its going to take time ya know. and my regular doctor keeps telling me to go walk around for 45 minutes a day and i cant. she thinks i can and that its easy for me to with the migraine. so it leads my parents to think that i can as well. so i doubt they will let me apply for disability even though i think it would be safe to have just in case doctors cant fix my migraines in the mean time. since doctors arent caught up with migraines. they are to complex. who knows the stimulator may work for me and im so hopeful but to live the way i am living right now theres no way i can work or do anything for that matter.
im so sorry you cant go on it. thats terrible, seems a little unfair...
the driving still seems a lot... esp with a person who has problems with migraines.
i am so sorry to hear about your mother. i hope tomorrow is a better day. at least you had the day with her. does she speak at all? or in any pain?  hope im not asking to many questions. if you dont want to talk about it im sorry for asking and we can stay off the topic.
:)
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Mary,
I am so sorry to hear that people are not understanding the gravity of your problem.  Don't your neurologists understand that you can't walk with your migraines?  I did read the reason for why physical exercise greatly exacerbates migraines, but can't recall exactly.  You need to repeat to your parents what the neurologist expects for you to do, and if the neurologist doesn't understand, find a different one.  

Repeat to your parents the advice from your doctors that make sense to you, not something as stupid as going out to walk for 45 minutes.  All of my neurologists understand that I can't physically move much at all without getting severe migraines.  Even slowly walking through a store like Costco has left me sobbing with pain at the check-out counter.

Without any disability, you're going to be financially dependent on your parents for possibly years to come.  And that always comes with high expectations of the child from the parents. They don't need to know about it, do they?  You're a full adult.  There's no way that they can find out that I can see.  Why would you need to have them let you apply for disability?   If you're living with them, then use a post office box for your application and checks to come.  More likely the government will deposit them directly into your bank account.  Please let me understand your hesitations.  Hope you don't think that I'm being too heavy handed about this.  I'm really just concerned about you.  

My mother just died last night.  I have been sobbing off and on since then.  She wasn't able to speak at all, except occasionally a slight nod of her head or sideways movement and occasionally a grunt.  She wasn't in any pain and died peacefully in her sleep.  She was down to 76 lbs and was not a small woman, so it's incredible that she lasted so long.  I appreciate your questions about her.

Now, I will get some of my life back since I visited her almost every day which took about 3 -4 hours a day.  A half hour drive each way because we live way out in the country.

I'm truly concerned about you and your pain and lack of life right now.  I know that you will get better in time, but in the meantime you need as much independence as you can have.

Sara
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Mary,

And as a P.S. about the disability, if you go on to it, then you can get Medicare within 2 years which is excellent health insurance, at no cost to you I believe.

Sara
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oh my gosh i am terribly sorry to hear about your mother. :( i wish there was something i could do. so sorry... how are you holding up? its good that she passed away in her sleep. and that she wasnt in pain. at least she is in a better place. you wont have to drive a little extra. and get more rest. which is good for your migraines.
i was talking to my mom about disability today and she said that i have to have a job in order to go on it. is that true? yeah im living with them now. i have a bank account because i had a job up until this whole thing happened. i guess i should have my neurologist talk to my parents then and figure out how it works. any job i feel like i could never do to be honest with you. the heat makes my migraines worse. i cant stand more then like 5 mins i cant walk more then 5 blocks without getting really tired. i cant sit with my hands on a computer more then 5-10 mins because my hands go numb. my feet do too. its endless!!! how do you deal with working!?
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Hi Mary,

I wasn't aware that you had to currently have a job to apply for disability.  I do know that they go back in time and you have to have made at least $5,000/year for a period of time.  I would check on it.

Do you tell your parents what you said to me above about your abilities?  If they don't get it, then I think it would be wise to have a doctor who does understand and agree with your disabilities to talk to them.  

Thanks for your kind words about my mother.  I've been grieving a lot, but it is better for her to be gone.  She was an absolute skeleton, especially as the rigor mortis set in.  I'm actually sorry that I saw her like that.  I still can't believe how skin and bones she was.  It's a big adjustment for me not to be planning all my time around my mother and to stop worrying about her.  That's a good part of this.  But after having visited her nearly every day for the last 2 years of her being in hospice, I had become very close to her.  

I don't work very much and most of my pay comes from computer work that I do for a major corporation--logging in the training, printing training certificates and supplying my booklets and powerpoint presentation.  I am very fortunate to have that work.  It does take me far longer to type and do the work, but I can take my time.  I also struggle a lot with fibromyalgia which causes discomfort all over my body and probably accounts for the many other medical conditions that I have.

I think that you are still recovering from your stroke.  It does take a lot of your energy for a period of time.  And the migraines alone sap ALL of your energy.  If I hadn't gotten so many treatments that did give me relief, I wouldn't be able to do anything, even though my life is severely limited as it is.

Keep getting more advice and following the suggested treatments.  
Another thing that keeps most of my migraines from getting worse is a skin gel.  I use it almost every day.   But it doesn't help if the migraines are severe, so it may not be useful for you.  I put the gel where the headache hurts the most on the front of my face.   The ingredients of this anti-inflammation gel that requires a special pharmacy to mix up are:  Amitrityline-2%, Ketoprofen – 10%, Gabapentin – 3%, Lidocaine – 2% and Transdermal Gel – 60 g.  Needs a prescription to get.  My pharmacy even mails it out.

I hope that you aren't being hard on yourself.  It must be difficult for you not to have full understanding of your situation.  My husband occasionally refers to things that I haven't done, then I come back at him that I am so disabled by my migraines.  I think he forgets sometimes.  Most of the time he warns me about not doing too much.  And if I do, it means that he will spend hours at the ER with me also.

Let me know any new developments with you.

Sara
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yeah i guess ill have to talk to someone who really knows about disability so i can figure out what i should do. ugh so much to do. yeah my parents dont really understand anything so my doctor would have to talk to them about things i can do and cant do. it must have been really hard seeing your mom like that. i couldnt imagine that. heart breaking. but better that she isnt in pain anymore. and you dont have to see her looking like that anymore. im always achey (achy) and hurting so i can only think of how much you are hurting with fibromyalgia.
yes i think im still recovering from the stroke. i dont think ill ever really recover from it. mentally or physically. migraines take all my energy out. yes. what about you?  i cant take amitriptilyne. your husband sounds really nice! it must be nice to have him around and understand all this. and have him be by your side. my boyfriend didnt even ask how i was feeling when i had the stroke. he never asked once. whenever i have a really bad migraine he leaves the house. he doesnt stay by my side ever. its awful. i broke up with him a few days ago but he still hasnt moved out. i really dont want him too just because i hate not having anyone sleeping next to me. im scared to be alone. you ever feel that way? that something will happen to you again?
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Mary,

It is hard to make much progress after a stroke when you are disabled by migraines.  But your migraines are going to get better in time.   People do continue to make progress with their deficits after a stroke and so time itself will probably help your migraines and in the meantime you are very wise to try every treatment available.  Try to get the skin gel.  It doesn't cause rebound headaches.  Other new things will come along.  

Question: Are you able to take any anti-depressant?  I know that you said that you had tried hundreds of medications.  

I would sleep as much as you need to.  Strokes can cause the need for more sleep and migraines exponentially require sleep.  It's been almost 4 years since my stroke and remember that 10 days ago, I slept 20 out of 21 hours and still had a bad migraine.  Lack of sleep I find is one of the biggest triggers of my migraines--that and too much of any physical activity.  And night before last, I needed 16.5 hours of sleep and didn't feel like I got enough, but had to get ready for a training session that I had to give today.

I thought that you mentioned above that you were living with your parents.  Was that just since you broke up with your boyfriend, or are your parents okay with him sleeping over at their house?  

I can certainly understand your need to have someone sleeping with you.   Don't judge yourself for keeping him around if he helps you at all.  You're not able to get out to meet someone else very easily, so your situation is different.  Your boyfriend is not good with sickness.  It scares him.  And I know it hurts you, but don't judge yourself if you do get something from him.

Thanks again for your empathy about my mother.  I'm here to support you.  I do care about you.  

Sara

    
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sorry i havent been on lately. i have only been awake for 5 hours a day. boyfriend and i have gotten back together and its going awful. so it was a bad idea. my parents love him so they love when he stays over. which makes it worse for me....  my headaches are awful! doctor started me on new medications. dont work. and im going for biofeedback that wont work on thursday. i read about it seems kind of dumb because it is for people with daily headaches not chronic migraines like i have. but ill do it to check it off the list. my mood has gotten a little bad because this cat i love so much has been biting everyone and my parents are getting fed up with her. and im going crazy not knowing what to do. life is stressful not helping. how have you been? what have you been up too? how are your migraines?
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