Hello all:
I hope everyone had a great holiday season! My New Year's resolution is, you guessed it, to be headache/symptom free.
I have changed neurologists in the hope to find more answers, and it seems like it may be working.I just had a neuro appt today, and he seemed very optimistic that he could consult with my neurosurgeon and find an answer to this prediment. He raised the dosages of one of my meds and let's hope it works. He said he either wants an MRI, or a spinal tap or both. I don't like either of them. So, either way, I'm not going to be happy, but I will be happy if these headaches can be GONE.
Anyway, Happy New Year and health and happiness to all!
Moe
Wednesday, January 9, 2013
Tuesday, December 11, 2012
Will it ever get better?
There are some days, bad headache days, where I feel like things will always be this way. NO matter how many doctors I go to, how many pills I take, whatever exercises I do...it just ends up the same way!!
I went to the ENT today, and they think my headaches might be allergy related. Well, I kind of figured that would happen, but if what he gave me works, then praise be to the living God. Because I would rather have it be allergy induced migraine like headaches than Intracranial Hypertension, which more than often, results in a surgical cure. With the ringing in my ears, constant headache, floaters in my vision and feeling like my face is going to basically blow up; if it's just allergies, I'd be surprised, but my body has done weird things before. I am going to start working with an audiologist and taking some vitamins for the ringing, because it's driving me NUTS, and there's no real medication that you can give for ringing in the ears, and I would much prefer the natural route anyway. I am also getting blood allergy tested for just about everything, so I can avoid whatever I'm allergic to, even if they find out my headaches are caused by something else.
So, at 22 let's list off my specialists I have:
an ENT, a gastroenterologist, a neurologist, a dietician, a nutritionist, a neurosurgeon, a gastric surgeon, an OB/GYN, a sleep disorders doc/respiratory doc....I think that's enough for now.
There are days when I feel like I'm 70 years old with all of the shit my body puts me through, and I don't know if anyone, truly not in this position could fully understand. I just want to go back to feeling like someone my age again, and not have to worry about taking my meds on time, or which one is going to interact with which or whether my head is going to hurt so bad I'm not going to be able to go to school, or whether I'll be able to feel my face today or whether I"ll be able to eat real food....NOT WHAT I WANT TO WORRY ABOUT.
I hope everyone else is doing well! :)
Until next time, and hopefully something happy will be here next time,
Moe
I went to the ENT today, and they think my headaches might be allergy related. Well, I kind of figured that would happen, but if what he gave me works, then praise be to the living God. Because I would rather have it be allergy induced migraine like headaches than Intracranial Hypertension, which more than often, results in a surgical cure. With the ringing in my ears, constant headache, floaters in my vision and feeling like my face is going to basically blow up; if it's just allergies, I'd be surprised, but my body has done weird things before. I am going to start working with an audiologist and taking some vitamins for the ringing, because it's driving me NUTS, and there's no real medication that you can give for ringing in the ears, and I would much prefer the natural route anyway. I am also getting blood allergy tested for just about everything, so I can avoid whatever I'm allergic to, even if they find out my headaches are caused by something else.
So, at 22 let's list off my specialists I have:
an ENT, a gastroenterologist, a neurologist, a dietician, a nutritionist, a neurosurgeon, a gastric surgeon, an OB/GYN, a sleep disorders doc/respiratory doc....I think that's enough for now.
There are days when I feel like I'm 70 years old with all of the shit my body puts me through, and I don't know if anyone, truly not in this position could fully understand. I just want to go back to feeling like someone my age again, and not have to worry about taking my meds on time, or which one is going to interact with which or whether my head is going to hurt so bad I'm not going to be able to go to school, or whether I'll be able to feel my face today or whether I"ll be able to eat real food....NOT WHAT I WANT TO WORRY ABOUT.
I hope everyone else is doing well! :)
Until next time, and hopefully something happy will be here next time,
Moe
Monday, November 19, 2012
FRUSTRATED
Ok, so naturally my posting is fueled by something. Today it's pain.
I went about my day today, and my headache was nominal---->normal which I can deal with. But as soon as I got home, it's like my mind knew that I didn't have to keep up appearances anymore and BOOM.
I just HATE this. I hate having a headache every day. I hate having half of my face feel numb on any given day. I hate the fact that my ears ring so loud sometimes I have to have people repeat themselves sometimes because it's hard to hear over it. I hate having to grab for words some days. I hate being tired despite getting 14 hours of sleep the previous night. I HATE IT ALL.
I am 22, I should be enjoying life. Waking up every day thinking about what I can do to change the world today, and not how bad my headache is going to be, or how loud the ringing is going to be today. It's just getting old. ALREADY.
There has to be something that SOMEONE can do. I am going to try accupuncture and natural hollistic treatments for now, because, to date, my pharmacuticals haven't really been doing much. And since my neurologist doesn't really feel like doing anything except increasing my dose of current meds or adding new ones; I think it's my turn now.
I need to find a way to lower my ICP naturally. I think it's the cause of all my problems, and I will stick by that. The initial decompression helped so much because it released the pressure, and I need to find a way for the pressure in my head to stay low, and to keep releasing when it needs to ( without any more implants, meshes, plates etc)
Okay, sorry for the rant again, but pain fuels ranting for me.
Til next time,
Moe
I went about my day today, and my headache was nominal---->normal which I can deal with. But as soon as I got home, it's like my mind knew that I didn't have to keep up appearances anymore and BOOM.
I just HATE this. I hate having a headache every day. I hate having half of my face feel numb on any given day. I hate the fact that my ears ring so loud sometimes I have to have people repeat themselves sometimes because it's hard to hear over it. I hate having to grab for words some days. I hate being tired despite getting 14 hours of sleep the previous night. I HATE IT ALL.
I am 22, I should be enjoying life. Waking up every day thinking about what I can do to change the world today, and not how bad my headache is going to be, or how loud the ringing is going to be today. It's just getting old. ALREADY.
There has to be something that SOMEONE can do. I am going to try accupuncture and natural hollistic treatments for now, because, to date, my pharmacuticals haven't really been doing much. And since my neurologist doesn't really feel like doing anything except increasing my dose of current meds or adding new ones; I think it's my turn now.
I need to find a way to lower my ICP naturally. I think it's the cause of all my problems, and I will stick by that. The initial decompression helped so much because it released the pressure, and I need to find a way for the pressure in my head to stay low, and to keep releasing when it needs to ( without any more implants, meshes, plates etc)
Okay, sorry for the rant again, but pain fuels ranting for me.
Til next time,
Moe
Monday, November 12, 2012
Long time no post! Small rant...
Hello everyone!
Sorry about my absence lately, school has pretty much overtaken my life, and I have had to concentrate on that rather than my social media, but something prompted me to post today. I will write a more thorough update later, but what I really want to say, I already said in my Facebook status, and can be said by the following obituary.
http://www.emersonfuneralhome.com/fh/obituaries/obituary.cfm?o_id=1816039&fh_id=10418#.UKF8NzNtrw8.facebook
My Facebook Status from 11/12/12:
Nobody should die from Chiari. It's a very treatable disease. The medical community must educate themselves, and research must be conducted to alleviate deaths that continue to happen from this disease and it's related processes. Sleep apnea is treatable. Scoliosis is treatable. Ehlers Danlos Syndrome is manageable. Tethered Cord syndrome is treatable. Idiopathic Intercranial Hypertension is treat
able/manageable. Not all problems that can come with Chiari are listed, but listen people, most of them can be treated or managed, and it's the medical communities ignorance of this disease process that keeps people in pain, and is now taking the lives of children, young adults and adults alike. I'm sorry for ranting, but I don't want to become a statistic. I'm happy I found out that I have Chiari so that I can hopefully avoid an unspeakable fate, but physicians and researchers have to listen to patients first; listen to their stories of pain, lost jobs, memories, physical function. The key word here is listen. Listen to an underrepresented population that speaks loudly in cries of pain. Rant over.
This makes me feel even more passionate about finding ways to treat Chiari. PEOPLE ARE DYING, SUFFERING AND IN PAIN. SOMETHING NEEDS TO BE DONE. Katherine was 19, and she had her whole life ahead of her.
It's not right.
Until next time,
Moe
Monday, August 27, 2012
Finally got my pre op MRI pics to load!
Will update later, but I finally got my MRI images to load...which I think is exciting :)
These are my pre-op images, I will try to get a post op disk....
Just thought it was interesting...that's all.. Talk to you later :)
Moe
These are my pre-op images, I will try to get a post op disk....
Moe
Friday, August 17, 2012
Week 3: Update
Well,
Thought it was time to get on here and give y'all an update.
Feeling better than crappy, but not feeling the best. Still having headaches when I change positions.
I take pain killers every day, except when I am driving, and the whole day, I wait for the moment when I can relieve the pain from my head. And it's not my neck, because I have almost full mobility of it now. I mean, it's sore from driving and I need a day of rest between driving days, but it doesn't hurt as much as these headaches that I am having. I have been instructed by both the ER doc and my surgeon, Dr. Lovely, to increase my intake of caffeine and to definitely take my pain meds when I need them. I have an MRI scheduled for next Wednesday to make sure that the fluid he saw on my CT scan hasn't gotten bigger.
The only thing I keep getting frustrated about is that I had this surgery to rid myself of these debillitating headaches, and I came out with ones that are worse. Don't get me wrong, I got many benefits; I lost the feeling that I was drunk while I was walking due to lack of balance, my numbness and tingling my face and hands, and many more puzzling symptoms.Also, I wanted to get off a lot of the meds I am on, ( Topamax, Amitrypiline, Valium, Hydrocodone, Fioricet, two courses of steroids, the list goes on)
Well, seeing as I am falling asleep from all the meds that I'm on I 'm going to cut this off.
I promise the next blog will be longer and I will write it during the day when I am not so drugged up....
God Bless everyone! :)
Moe
Thought it was time to get on here and give y'all an update.
Feeling better than crappy, but not feeling the best. Still having headaches when I change positions.
I take pain killers every day, except when I am driving, and the whole day, I wait for the moment when I can relieve the pain from my head. And it's not my neck, because I have almost full mobility of it now. I mean, it's sore from driving and I need a day of rest between driving days, but it doesn't hurt as much as these headaches that I am having. I have been instructed by both the ER doc and my surgeon, Dr. Lovely, to increase my intake of caffeine and to definitely take my pain meds when I need them. I have an MRI scheduled for next Wednesday to make sure that the fluid he saw on my CT scan hasn't gotten bigger.
The only thing I keep getting frustrated about is that I had this surgery to rid myself of these debillitating headaches, and I came out with ones that are worse. Don't get me wrong, I got many benefits; I lost the feeling that I was drunk while I was walking due to lack of balance, my numbness and tingling my face and hands, and many more puzzling symptoms.Also, I wanted to get off a lot of the meds I am on, ( Topamax, Amitrypiline, Valium, Hydrocodone, Fioricet, two courses of steroids, the list goes on)
Well, seeing as I am falling asleep from all the meds that I'm on I 'm going to cut this off.
I promise the next blog will be longer and I will write it during the day when I am not so drugged up....
God Bless everyone! :)
Moe
Thursday, August 9, 2012
ER time!
Hello all,
So, this post is a little late, but I haven't had much time between doctor's appts, getting ready for school and sleeping, so here we go:
In a previous post, I mentioned that I was having headaches again. Well last Sunday, I decided enough was enough, and we headed to the ER to try to figure out what was going on.
We arrived at the ER, and waited in the waiting room, and people were obviously being triaged based on their complaints, rather than their order of entrance because I was triaged pretty late after I came in, it took about 2 hours after I arrived to get into the actual Emergency Department.
We got into the ER, I got into a gown, and a nurse came in and got my history....yes I am nauseous, no I don't feel unsafe in my home....yes I have pain....la la la la...blah blah blah...
It seemed like forever until the doc came in. I told him what was going on, that I had had surgery two weeks prior and I was having positional headaches ( whenever I sat up or stood up) and they were pretty much overtaking me. He did his usually doctor things, listened to my heart and lungs, asked me the same questions the nurse had asked me,told me he was going to call my surgeon and then he left. Oh, he also asked if I wanted something for pain, and I responded with a "yes please", because this headache seemed to be overtaking me at this point.
It was good that I was blessed with a wonderful nurse, Gloria, who liked to laugh and laughed at the fact that my brother and I were threatening each other with medical procedures ( we are both EMTs) and quizzing each other on EMT stuff to pass the time. ( Another nurse actually stuck her head in to see if a doctor was in there....lol)
I got some good pain meds, and some Zofran ( a miracle drug which made my nausea disapear) The pain meds made me a bit loopy, but they made my headache go a away for a few sweet hours. My surgeon wanted a CT scan and some blood work, so they did that, and we waited, and waited and waited......
They didn't find anything immediately dangerous, so they sent me home with some Zofran, and some pain meds and told me to talk to me NS the next day,
The next day, Dr. Lovely said that he did see some fluid, but he didn't think it was enough to cause my headaches, but he did want to see me the next day.
SO, the next day ( this being Tuesday) I went to Dr. Lovely's office, and he told me that me incision looked good, and that the small build up looked like it could be anything, and since I was so newly post op, it could be blood, or it could be a small leak of CSF ( Cerebrospinal Fluid) but he put me on a course of steroids for
6 days to see if he could get any fluid that
So here I am. hoping these steroids help or else it's back to the drawing board. Dr. Lovely is telling me to be patient, but let me tell you, it's REALLY hard....
Ok, so that's the story for now.....
I hope you all are well!
Maureen
So, this post is a little late, but I haven't had much time between doctor's appts, getting ready for school and sleeping, so here we go:
In a previous post, I mentioned that I was having headaches again. Well last Sunday, I decided enough was enough, and we headed to the ER to try to figure out what was going on.
We arrived at the ER, and waited in the waiting room, and people were obviously being triaged based on their complaints, rather than their order of entrance because I was triaged pretty late after I came in, it took about 2 hours after I arrived to get into the actual Emergency Department.
We got into the ER, I got into a gown, and a nurse came in and got my history....yes I am nauseous, no I don't feel unsafe in my home....yes I have pain....la la la la...blah blah blah...
It seemed like forever until the doc came in. I told him what was going on, that I had had surgery two weeks prior and I was having positional headaches ( whenever I sat up or stood up) and they were pretty much overtaking me. He did his usually doctor things, listened to my heart and lungs, asked me the same questions the nurse had asked me,told me he was going to call my surgeon and then he left. Oh, he also asked if I wanted something for pain, and I responded with a "yes please", because this headache seemed to be overtaking me at this point.
It was good that I was blessed with a wonderful nurse, Gloria, who liked to laugh and laughed at the fact that my brother and I were threatening each other with medical procedures ( we are both EMTs) and quizzing each other on EMT stuff to pass the time. ( Another nurse actually stuck her head in to see if a doctor was in there....lol)
I got some good pain meds, and some Zofran ( a miracle drug which made my nausea disapear) The pain meds made me a bit loopy, but they made my headache go a away for a few sweet hours. My surgeon wanted a CT scan and some blood work, so they did that, and we waited, and waited and waited......
They didn't find anything immediately dangerous, so they sent me home with some Zofran, and some pain meds and told me to talk to me NS the next day,
The next day, Dr. Lovely said that he did see some fluid, but he didn't think it was enough to cause my headaches, but he did want to see me the next day.
SO, the next day ( this being Tuesday) I went to Dr. Lovely's office, and he told me that me incision looked good, and that the small build up looked like it could be anything, and since I was so newly post op, it could be blood, or it could be a small leak of CSF ( Cerebrospinal Fluid) but he put me on a course of steroids for
6 days to see if he could get any fluid that
So here I am. hoping these steroids help or else it's back to the drawing board. Dr. Lovely is telling me to be patient, but let me tell you, it's REALLY hard....
Ok, so that's the story for now.....
I hope you all are well!
Maureen
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