ITs been forever since I posted anything on this blog.
What can I say that has changed? Not much. the Migraines continue. however My Wife and I have found two Doctors who seem to be the only Competent ones that we've met thus far.
Dr. Cooper & Dr. Peredo at University of Michigan Hospital. Dr. Copper seems like a young guy, but He catches on quick and was the 1st person who told us of a possible treatment.
Oxygen. I never thought regular run of the mil Oxygen would be a therapy or treatment for these headaches. But the stuff works. They key is the Amount and the Time.
When a regular person is in the hospital and receives Oxygen they get this little "nose hose" that delivers a standard low dose rate of 2 liters per minute. From everything I've read, this is the normal range for most Oxygen delivery.
However Dr. Cooper said He wanted to use my wife for a Research study on the Use of Oxygen on patients with Cluster Headaches. The dose for her is much higher. 15 liters per minute. I've found out that 15 lpm is the Amount given when a patient is experiencing Respitory Distress. Such as when you goto the ER at a Hospital and someone might be fighting for their life.
It was like a movie magic miracle. Nicky was suffering from one of the really bad migraines with stroke like droopiness and sharp intense pain on one side. Within less than 60 seconds of the Oyxgen dose, her face returned to normal and she said the pain dropped from a average norm of 8 (10 being the highest, 1 is the lowest) to about a 3. This was awesome. It brought to tears and I was praising God. Dr. Cooper videotaped Nicky with the treatment and took photos. He wrote a script for her, she was to get Oxygen up to 4 times a day, at 15mins per dose, at 15 lpm. Thats a lot of Oxygen.
I do not know all the science or understand it all. But Its as if under normal conditions we breathe in and out and our bodies get a certain amount of Oxygen. When Nicky is experiencing an Attack like this, She cannot seem to get enough of the Oxygen she needs. Having the Tank of Oxygen with a non-rebreather Mask she is able to get not only the amount she needs to operate properly but also More Oyxgen to her blood which allows the muscles & brain to return to normal.
Dr. Peredo the other doctor she is seeing at U of M. is a Rheumatologist. He did a plethora of blood and other tests and Suggested some levels of her immune system are very low. He suggested her to take a massive dose of Vitamin D. One pill per week for 6 weeks to help bring her body back into balance.
Reading about Vitamin D, turns out that this Vitamin has been shown to help people with various Bone or Muscle issues. There is so much I do not understand.
But since Nicky has been seeing Drs Copper and Peredo and receiving the Oxygen she is doing better. She finished a 4 months medical leave and went back to work this Feb 2009. If we didn't have the Oxygen tanks at home, I do not think she would of been able to function.
Oxygen & Vitamin D. Its not a cure... but its a darn good therapy and so far its the only thing that seems to be helping.
Peace,
Luke
Monday, March 2, 2009
Wednesday, July 9, 2008
i feel kind of good...
i feel kind of good because my wife is acting her normal happy self for a the last few hours.
She however has a way of not always telling me when she's in dire pain like she gets so many times these many months.
She says she doesn't always tell me cause she thinks I worry too much. I guess I do... but Its very hard for me not to worry about my best friend, my most favorite person in the world.
I showed her this site and the blog and the posts. She smile and told me she's glad I have this outlet which I can use as a sort of therapy.
A friend told me today about this Natural Cures book. I've seen it before and remain unconvinced. I looked though a copy I got from the Library and I haven't seen or read one single item that shows any wonderful natural cure for Migraines. Its maddening trying to sort out the Quacks from the Real Stuff.
I also read a snipped about some rare tropical fruits which apparently can work wonders for treating various ailments such as Migraines... I'm sure you've heard about the names Noni, Mangosteen, Goji, and even Pomegranate. I am willing to try almost anything. I don't see any harm in Drinking a glass a day of some Juice. Have to find the stuff first. Guess I'll go visit my local Health Foods store tomorrow. I suspect they probably cost an arm and a leg as well.
Good night,
Luke
She however has a way of not always telling me when she's in dire pain like she gets so many times these many months.
She says she doesn't always tell me cause she thinks I worry too much. I guess I do... but Its very hard for me not to worry about my best friend, my most favorite person in the world.
I showed her this site and the blog and the posts. She smile and told me she's glad I have this outlet which I can use as a sort of therapy.
A friend told me today about this Natural Cures book. I've seen it before and remain unconvinced. I looked though a copy I got from the Library and I haven't seen or read one single item that shows any wonderful natural cure for Migraines. Its maddening trying to sort out the Quacks from the Real Stuff.
I also read a snipped about some rare tropical fruits which apparently can work wonders for treating various ailments such as Migraines... I'm sure you've heard about the names Noni, Mangosteen, Goji, and even Pomegranate. I am willing to try almost anything. I don't see any harm in Drinking a glass a day of some Juice. Have to find the stuff first. Guess I'll go visit my local Health Foods store tomorrow. I suspect they probably cost an arm and a leg as well.
Good night,
Luke
Tuesday, July 8, 2008
my brain is bleeding...
the title of this blog "My brain is unhinged" is very peculiar. I don't remember exactly but I seem to recall she's told me also "My skull feels like its unhinged."
Thats probably what I should of called this blog. But to me it seems like If someone's Brain came unhinged, it would be pretty freaky weird too. So the title stays.
*Other things she's told me before:
"it feels like my brain is bleeding"
she gets this feeling like there is a wetness on one side of her head. It always boggles my head. But a little searching on the internet and I read once some lady said her head felt like it was Wet or Bleeding. I still don't know what that feels like.
"its like someone stabbing me in the back of the head with an ice pick."
And when she has that pain, I can almost see it. I'll be driving us somewhere and all of a sudden out of the blue, she will jerk and her left eye will close and she will hunker over, and then its gone. sometimes it lasts for seconds, sometimes it lasts for longer. It really looks like someone is Whacking her the way she jerks. Sometimes in my mind I wonder is that some invisible Demon smacking her? It's frightening, its scary to see. And I have no idea what it feels like. I have no way of understanding it, Except I can imagine it must be insane to deal with it.
Or she will be standing there in the dining room talking to me, and WHAMMMO, she jerks, her eye closes, her face distorts, her mouth droops, she almost looks like she lost her balance, she tries to talk and its like her mouth is full of cotton... Then it subsides.
*Terms Doctors have come up with:
"Complicated Migraine Syndrome"
Thats what the doctors first told us she had. I thought it was a load of guff. I am fairly smart, I had never heard of it. My first instinct was it was something the Doctor came up with to get us to shut up. We did some searches online. And sure 'nuff, there were some sites that referenced that term.
"Hemiplegic Migraines."
Finally her Neurologist, Dr. Silver told us he thinks she has "Sporadic Hemiplegic Migraines." Migraines with major symptoms that mimic Stroke. It seems to fit... Because the Two times, that Nicky has been in the Hospital the doctors/nurses all thought she was having a Stroke.
But I still don't get it... All the medicines Doctors have prescribed, nothing seems to be a Real remedy, a Real solution.
Thats probably what I should of called this blog. But to me it seems like If someone's Brain came unhinged, it would be pretty freaky weird too. So the title stays.
*Other things she's told me before:
"it feels like my brain is bleeding"
she gets this feeling like there is a wetness on one side of her head. It always boggles my head. But a little searching on the internet and I read once some lady said her head felt like it was Wet or Bleeding. I still don't know what that feels like.
"its like someone stabbing me in the back of the head with an ice pick."
And when she has that pain, I can almost see it. I'll be driving us somewhere and all of a sudden out of the blue, she will jerk and her left eye will close and she will hunker over, and then its gone. sometimes it lasts for seconds, sometimes it lasts for longer. It really looks like someone is Whacking her the way she jerks. Sometimes in my mind I wonder is that some invisible Demon smacking her? It's frightening, its scary to see. And I have no idea what it feels like. I have no way of understanding it, Except I can imagine it must be insane to deal with it.
Or she will be standing there in the dining room talking to me, and WHAMMMO, she jerks, her eye closes, her face distorts, her mouth droops, she almost looks like she lost her balance, she tries to talk and its like her mouth is full of cotton... Then it subsides.
*Terms Doctors have come up with:
"Complicated Migraine Syndrome"
Thats what the doctors first told us she had. I thought it was a load of guff. I am fairly smart, I had never heard of it. My first instinct was it was something the Doctor came up with to get us to shut up. We did some searches online. And sure 'nuff, there were some sites that referenced that term.
"Hemiplegic Migraines."
Finally her Neurologist, Dr. Silver told us he thinks she has "Sporadic Hemiplegic Migraines." Migraines with major symptoms that mimic Stroke. It seems to fit... Because the Two times, that Nicky has been in the Hospital the doctors/nurses all thought she was having a Stroke.
But I still don't get it... All the medicines Doctors have prescribed, nothing seems to be a Real remedy, a Real solution.
new Doctor maybe
my wife's neurologist told her a few weeks ago that there wasn't much more he could do for her. He was basically at a loss for what else to try. Dr. Silver has been a good doctor so far. Better than I thought he would be. He's seen the Weakness and the droopiness and he's heard the slurred words and he's seen when Nicky has been in some of the worst pain. He's tried many different medicines to try and help her some of the medicines which frankly I don't know even do anything... Topamax is one that he recently wanted her to take. I know one thing, the stuff costs a bunch, even with our health insurance. So far last count there's about 9 different medicines my wife has for trying to maintain her sanity. That doesn't include the medicines she needs to take everyday to fight Asthma, or hypothyroid, or nerve pain, or heart palpitations.
Dr. Silver wants her to see Dr. Coober at some UofM clinic. I called them up and after some varied bs I find out they can't see Nicky till October.
OCTOBER! This is June dammit. I take the appointment for her anyway. We hope maybe when Dr. Silver finds out maybe he can speed the wait up.
Meanwhile after I keep telling friends and family, my mother tells me about a guy her doctor suggested.
I decide somehow I will contact Dr. Saber and see if they can see her... hopefully they take our Insurance... and hopefully they can see Nicky before October.
Peace,
Luke R.
Dr. Silver wants her to see Dr. Coober at some UofM clinic. I called them up and after some varied bs I find out they can't see Nicky till October.
OCTOBER! This is June dammit. I take the appointment for her anyway. We hope maybe when Dr. Silver finds out maybe he can speed the wait up.
Meanwhile after I keep telling friends and family, my mother tells me about a guy her doctor suggested.
I decide somehow I will contact Dr. Saber and see if they can see her... hopefully they take our Insurance... and hopefully they can see Nicky before October.
Peace,
Luke R.
more about me
Well some info about me. My journey with Migraines is not as important to me as my quest for finding a treatment/remedy/cure for my wife and the Migraines she deals with.
But as she often tells me, my pains are important to her as hers are to me.
So here is some back story of my journeys with Migraines.
The first thing I can recall is its 2000 and my wife waking me up in the middle of the night in our old apartment. She says I stopped breathing. I don't believe her. But I do know I had a headache and I felt awful. During the day I always felt sleepy. As if I never get enough sleep. But I don't get it I sometimes sleep 10-12 hrs a day Naps included. This routine of snoring and sometimes my wife waking me up or myself waking up to find out she is not in bed next to me but she's sleeping on the couch because I was snoring too loud again. Since long as I can remember prior I would often migraines. They never seemed to be overtly terrible but at evening and night they would bother me so bad I could barely function. Things I would notice: Odd & annoying sounds. Music that would normally calm me would sound irritating and sometimes even make me wince. I'd hear weird sounds too. Stuff I might not normally notice, would become extremely annoying. Taste would be off, foods would lose taste or get too salty or I'd crave really salty foods. And lights. Lights of different kinds would seem to drive me bonkers... especially Flickering lights... the worst kind would be either Strobing light or If a Light was above a ceiling Fan and then I'd see the shadow of every fan blade repeating over over over again. That would really piss me off. I'd feel like GOD TURN IT OFF! And I get the shakes and I'd feel panic and I'd notice every itch and feel like every Nerve was on overdrive.
The worst ones were the migraines that made me feel like I was sick all over. Its like all I could do was lay in bed with a blindfold on my eyes, earplugs in my ears, a cold rag on my forehead and sleep was all I hoped for. I could sleep for 4 or 5 hours. Wake up feel decent and then be ok. My doctor started me on some different medicines and had me keep a headache journal. I'd often forget to write in it. The 1st big medicine I remember being prescribed was Imitrex. I knew some about Imitrex because my wife had been prescribed it but she couldn't take it as She said it made her feel like she was dying. I never knew what she really meant till I had to take it. I felt like my blood pressure dropped or rose, I don't remember which. It made my neck stiff and my joints felt like I was becoming rigid. Long and short is I stopped taking Imitrex very soon.
Another trip to doctor and they prescribed me something called Midrin. Well let me tell you Midrin was almost a miracle drug. I could take 1 capsule if I knew a Migraine was coming and it would knock it out. If my pain was really bad, I'd take two and then goto sleep, Which was the best solution cause Midrin is a strong narcotic and almost every medicine I seem to take thats stronger than Tylenol seems to make me sleepy.
Sleep was the main thing I never seemed to get enough of. Backtrack to the beginning on my Adult Migraine experience and I can remember the Same Common Theme... My wife waking me up in the middle of the night saying I stopped Breathing. And I always was too stubborn or I balked at the idea. Sure I snored, I had woke myself up many times even cause I heard myself snore. But I never thought for one minute that I stopped breathing. The Migraines would come now 2-3 a month... I know not as bad a some people but for me It was bad. I was used to only getting One every few months. It was now 2001 and at work I'd fall asleep at a moments notice. It was embarrassing to have a coworker and one time even my boss walk over to my cubicle and wake me up. I did not know I was asleep. I was very embarrassed and felt terrible. Whatever this was was affecting my Job too.... Ok Time for a serious visit to a doctor.
My regular doctor wasn't available. So I went to see someone else in the family practice. A guy, his name is Dr. Albert. I remember him cause I remember asking him what a D.O. was and why wasn't he a M.D. He told me he was an Osteopathic Doctor. And he told me as an Osteopathic Doctor he believed in more than just doling out drugs like most M.D.'s
Shoot, All I know is this, Dr. Albert seemed like he knew something different. I was willing to try anything. I knew most of the medicines I was taking weren't doing much for me, and I had the inkling that the Sleep problem I had been having were linked to my Migraines. He felt that my Sleeping problems were more than just a side illness, he felt my Migraines were directly caused by whatever sleep problem I had. Onward to the Sleep clinic.
I had a brief idea about Sleep Apnea. My mother in law had been diagnosed with it and had been using a CPAP for several years. Never in my life did I think I had Sleep Apnea. That First Sleep Study was very weird. I had ideas what to expect. I did not sleep very well at all. I guess that was a good thing cause it meant those Clinicians could better diagnose me. A second Sleep study was ordered for a few weeks later. I remember the 2nd one vividly because just 4 hours into I was awoken by the Clinic person and they fitted me with one of their CPAP's. I slept for another 2 hrs or so and that machine was weird but, I swear to God it was like the Best 2 hr Nap I ever had. A few more visits to that Sleep Clinic, and they told me that 1st night I have over 450 Sleep Apnea Events. With some events lasting up to 40 seconds. There were times I stopped breathing for 40 Seconds!!! No WONDER I was having Migraines and Falling Asleep at various times... I WAS SLEEP STARVED! Within the week I was fitted with my own CPAP machine. It was bulky, but it became my new best pal.
My Migraines seemed to clear up pretty much after that. I've been dealing with Sleep Apnea now for maybe a dozen years that I knew about, and for about 8 years I've used my CPAP. I cannot sleep at night or take a nap without my CPAP. If I do sleep without my CPAP then I start to get Migraines bad again. Now I rarely get Migraines as bad as I did. I seem to know when they are coming... I take an Esgic Plus or a Midrin and attempt to get more rest and avoid the triggers like Flickering Lights, Stress, Not eating, and Caffeine.
Well thats basically me thus far. My main focus for this blog however is trying to help my wife and trying to find a cure or something for her Migraines.
Peace,
Luke R.
But as she often tells me, my pains are important to her as hers are to me.
So here is some back story of my journeys with Migraines.
The first thing I can recall is its 2000 and my wife waking me up in the middle of the night in our old apartment. She says I stopped breathing. I don't believe her. But I do know I had a headache and I felt awful. During the day I always felt sleepy. As if I never get enough sleep. But I don't get it I sometimes sleep 10-12 hrs a day Naps included. This routine of snoring and sometimes my wife waking me up or myself waking up to find out she is not in bed next to me but she's sleeping on the couch because I was snoring too loud again. Since long as I can remember prior I would often migraines. They never seemed to be overtly terrible but at evening and night they would bother me so bad I could barely function. Things I would notice: Odd & annoying sounds. Music that would normally calm me would sound irritating and sometimes even make me wince. I'd hear weird sounds too. Stuff I might not normally notice, would become extremely annoying. Taste would be off, foods would lose taste or get too salty or I'd crave really salty foods. And lights. Lights of different kinds would seem to drive me bonkers... especially Flickering lights... the worst kind would be either Strobing light or If a Light was above a ceiling Fan and then I'd see the shadow of every fan blade repeating over over over again. That would really piss me off. I'd feel like GOD TURN IT OFF! And I get the shakes and I'd feel panic and I'd notice every itch and feel like every Nerve was on overdrive.
The worst ones were the migraines that made me feel like I was sick all over. Its like all I could do was lay in bed with a blindfold on my eyes, earplugs in my ears, a cold rag on my forehead and sleep was all I hoped for. I could sleep for 4 or 5 hours. Wake up feel decent and then be ok. My doctor started me on some different medicines and had me keep a headache journal. I'd often forget to write in it. The 1st big medicine I remember being prescribed was Imitrex. I knew some about Imitrex because my wife had been prescribed it but she couldn't take it as She said it made her feel like she was dying. I never knew what she really meant till I had to take it. I felt like my blood pressure dropped or rose, I don't remember which. It made my neck stiff and my joints felt like I was becoming rigid. Long and short is I stopped taking Imitrex very soon.
Another trip to doctor and they prescribed me something called Midrin. Well let me tell you Midrin was almost a miracle drug. I could take 1 capsule if I knew a Migraine was coming and it would knock it out. If my pain was really bad, I'd take two and then goto sleep, Which was the best solution cause Midrin is a strong narcotic and almost every medicine I seem to take thats stronger than Tylenol seems to make me sleepy.
Sleep was the main thing I never seemed to get enough of. Backtrack to the beginning on my Adult Migraine experience and I can remember the Same Common Theme... My wife waking me up in the middle of the night saying I stopped Breathing. And I always was too stubborn or I balked at the idea. Sure I snored, I had woke myself up many times even cause I heard myself snore. But I never thought for one minute that I stopped breathing. The Migraines would come now 2-3 a month... I know not as bad a some people but for me It was bad. I was used to only getting One every few months. It was now 2001 and at work I'd fall asleep at a moments notice. It was embarrassing to have a coworker and one time even my boss walk over to my cubicle and wake me up. I did not know I was asleep. I was very embarrassed and felt terrible. Whatever this was was affecting my Job too.... Ok Time for a serious visit to a doctor.
My regular doctor wasn't available. So I went to see someone else in the family practice. A guy, his name is Dr. Albert. I remember him cause I remember asking him what a D.O. was and why wasn't he a M.D. He told me he was an Osteopathic Doctor. And he told me as an Osteopathic Doctor he believed in more than just doling out drugs like most M.D.'s
Shoot, All I know is this, Dr. Albert seemed like he knew something different. I was willing to try anything. I knew most of the medicines I was taking weren't doing much for me, and I had the inkling that the Sleep problem I had been having were linked to my Migraines. He felt that my Sleeping problems were more than just a side illness, he felt my Migraines were directly caused by whatever sleep problem I had. Onward to the Sleep clinic.
I had a brief idea about Sleep Apnea. My mother in law had been diagnosed with it and had been using a CPAP for several years. Never in my life did I think I had Sleep Apnea. That First Sleep Study was very weird. I had ideas what to expect. I did not sleep very well at all. I guess that was a good thing cause it meant those Clinicians could better diagnose me. A second Sleep study was ordered for a few weeks later. I remember the 2nd one vividly because just 4 hours into I was awoken by the Clinic person and they fitted me with one of their CPAP's. I slept for another 2 hrs or so and that machine was weird but, I swear to God it was like the Best 2 hr Nap I ever had. A few more visits to that Sleep Clinic, and they told me that 1st night I have over 450 Sleep Apnea Events. With some events lasting up to 40 seconds. There were times I stopped breathing for 40 Seconds!!! No WONDER I was having Migraines and Falling Asleep at various times... I WAS SLEEP STARVED! Within the week I was fitted with my own CPAP machine. It was bulky, but it became my new best pal.
My Migraines seemed to clear up pretty much after that. I've been dealing with Sleep Apnea now for maybe a dozen years that I knew about, and for about 8 years I've used my CPAP. I cannot sleep at night or take a nap without my CPAP. If I do sleep without my CPAP then I start to get Migraines bad again. Now I rarely get Migraines as bad as I did. I seem to know when they are coming... I take an Esgic Plus or a Midrin and attempt to get more rest and avoid the triggers like Flickering Lights, Stress, Not eating, and Caffeine.
Well thats basically me thus far. My main focus for this blog however is trying to help my wife and trying to find a cure or something for her Migraines.
Peace,
Luke R.
Every quest has a beginning, I guess...
Hello... I guess thats a good start. As the title says, Every quest has a beginning. And the only thing I can think is, this is a Quest. A quest for Normalcy... is that a word? it seems like it to me.
My name is Luke. I've been pretty lucky all my life. I think the best luck I had was when I met my wife in 1994. So long ago, but sometimes it just seems like yesterday.
We met online. LOL well it wasn't exactly online back then, it was on a Computer service called Prodigy for some Michigan Pen Pals BBS. Long story short... We became pen pals, then best friends, and then lifemates. Married in 1998. This August is our 10 year wedding anniversary. Its scary sometimes when I think of it. But its still good.
This blog is dedicated to my wife, Nicole. I decided today, July 8th to make an attempt to Chronicle the Past and the Present journey of my Wife's varied mysterious and frightening medical experiences. Migraines.
I did some searches today and I was amazed how many different blogs I found about people who suffer from Headaches and Migraines. I thought to myself and prayed. Ok, I've decided sometimes one course of action is to talk about pain and maybe somehow other people will see this blog, they might comment on posts, they might even give me ideas I've never heard of or never tried.
Because I am at my wits end. The one thing I wish more than anything is for my those damned Migraines my wife suffers from to Go Away. I pray everyday for her healing.
The Title of this blog is from a phrase my wife often uses to try and explain to me how her head feels... My Brain is unhinged. It sounds weird enough, maybe someone will find this blog and read my stories.
Even if nothing comes of it, perhaps it will be a forum for me to at least express my frustrations.
Peace,
Luke R.
My name is Luke. I've been pretty lucky all my life. I think the best luck I had was when I met my wife in 1994. So long ago, but sometimes it just seems like yesterday.
We met online. LOL well it wasn't exactly online back then, it was on a Computer service called Prodigy for some Michigan Pen Pals BBS. Long story short... We became pen pals, then best friends, and then lifemates. Married in 1998. This August is our 10 year wedding anniversary. Its scary sometimes when I think of it. But its still good.
This blog is dedicated to my wife, Nicole. I decided today, July 8th to make an attempt to Chronicle the Past and the Present journey of my Wife's varied mysterious and frightening medical experiences. Migraines.
I did some searches today and I was amazed how many different blogs I found about people who suffer from Headaches and Migraines. I thought to myself and prayed. Ok, I've decided sometimes one course of action is to talk about pain and maybe somehow other people will see this blog, they might comment on posts, they might even give me ideas I've never heard of or never tried.
Because I am at my wits end. The one thing I wish more than anything is for my those damned Migraines my wife suffers from to Go Away. I pray everyday for her healing.
The Title of this blog is from a phrase my wife often uses to try and explain to me how her head feels... My Brain is unhinged. It sounds weird enough, maybe someone will find this blog and read my stories.
Even if nothing comes of it, perhaps it will be a forum for me to at least express my frustrations.
Peace,
Luke R.
Subscribe to:
Posts (Atom)
