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Headache, nausea/vomitting for days, eyelid swelling..
Hello,
I was diagnosed with ACM 3mm according to the MRI about 5 years ago. I've had migraines all my life, but I started having numbness/tingling on my left side. Started in my face then arm then leg within a few days, they ordered the MRI and found the ACM. I have been having worsening symptoms over the years, left side feels heavy, dropping things, and worsening headaches.
On Saturday I woke up with vomitting that would not stop, it was at least every 20 minutes for 9 hours and my husband took me to the emergency room for IVF and Reglan. I also had a terrible headache that was like my migraines behind the right eye, pain coming up from my neck behind the ear and to my eye, sore neck. They gave me toradol for the headache which helped minimal, and when I got home I took Lortab which helped more. Now my right eyelid is swollen. I have history of chronic sinusitis and had surgery a few years ago for it, was on prednisone, levaquin and avelox in nov/dec and ct scan showed some blockage, but surgeon said he could do surgery but I wasn't sure. My pcp said that this ent is a good doc, and doesn't just do surgery on everyone which I like, but while i was in with the ent he said the radiologist saw more blockage than he was seeing. Could this be d/t radiologist is looking at my films and ent is looking at a CD? I'm worried because I lost 4 pounds since last week, and I am not eating much at all, today i had tea and toast. I don't sleep long, only 6-7 hours a night since friday night. I still have nausea. I go to my pcp tomorrow to follow up. Still have headache that only lortab can control. I sent my paperwork to tci a few weeks ago. I take Amytriptylline 20 mgs hs, Singulair 10 mg hs, steroid nasal spray, and ibuprofen/lortab as needed. Any suggestions? Is the sinusitis related to the chiari? I've never woken up with vomitting like that in my life. Usually my migraines start in morning and then get worse during day and I vomit later in the afternoon until I fall asleep. Sorry for rambling, but I'm desparate. Any advice would be welcomed, or anything I should ask for at my pcp appoint tomorrow? I also have been feeling congestion/rattling in my left lower lung, but it clears with cough and I can't hear it with stethoscope, it comes and goes (history of asthma).
Thank you
I was diagnosed with ACM 3mm according to the MRI about 5 years ago. I've had migraines all my life, but I started having numbness/tingling on my left side. Started in my face then arm then leg within a few days, they ordered the MRI and found the ACM. I have been having worsening symptoms over the years, left side feels heavy, dropping things, and worsening headaches.
On Saturday I woke up with vomitting that would not stop, it was at least every 20 minutes for 9 hours and my husband took me to the emergency room for IVF and Reglan. I also had a terrible headache that was like my migraines behind the right eye, pain coming up from my neck behind the ear and to my eye, sore neck. They gave me toradol for the headache which helped minimal, and when I got home I took Lortab which helped more. Now my right eyelid is swollen. I have history of chronic sinusitis and had surgery a few years ago for it, was on prednisone, levaquin and avelox in nov/dec and ct scan showed some blockage, but surgeon said he could do surgery but I wasn't sure. My pcp said that this ent is a good doc, and doesn't just do surgery on everyone which I like, but while i was in with the ent he said the radiologist saw more blockage than he was seeing. Could this be d/t radiologist is looking at my films and ent is looking at a CD? I'm worried because I lost 4 pounds since last week, and I am not eating much at all, today i had tea and toast. I don't sleep long, only 6-7 hours a night since friday night. I still have nausea. I go to my pcp tomorrow to follow up. Still have headache that only lortab can control. I sent my paperwork to tci a few weeks ago. I take Amytriptylline 20 mgs hs, Singulair 10 mg hs, steroid nasal spray, and ibuprofen/lortab as needed. Any suggestions? Is the sinusitis related to the chiari? I've never woken up with vomitting like that in my life. Usually my migraines start in morning and then get worse during day and I vomit later in the afternoon until I fall asleep. Sorry for rambling, but I'm desparate. Any advice would be welcomed, or anything I should ask for at my pcp appoint tomorrow? I also have been feeling congestion/rattling in my left lower lung, but it clears with cough and I can't hear it with stethoscope, it comes and goes (history of asthma).
Thank you
Thank you for responding. I was thinking that my migraine on right and eye drooping is related to the chiari. I think we are all lucky to have Dr. Oro and also TCI. My eyelid still droops, but i wear my hear to that side so falls next to my eye, I'm hoping it hides it a little bit. I have had 5 MRIs and one mra in the past 6 months, this is getting out of hand. I keep calling tci because i'm afraid i'll wake up and have symptoms that are so bad i won't be able to go out or to work. Like when i woke up that saturday vomiting nonstop. I really appreciate your response and what Dr. Oro said. I hope you are eeling better soon. I'm glad you went to Dr Oro as I hear he is wonderful.
I had a second opinion with a neuro in my area about 5 years ago, the exam was horrible (had me hyperventilate for one thing to see if all my symptoms were d/t anxiety etc), and he said that lots of women my age suffer from anxiety/depression and offered me Lexapro which I declined. I'm already on elavil low dose for the migraines. My pcp said he disagrees and i'm not depressed, and i know i'm not. When I came home that day I watched the videos on tci's website they had just put them up i think as i hadn't seen them before. Those videos saved me. Why would he dismiss me that way, ugh. My neurologist that see's me is not like that guy, he never mentioned anxiety/depression, and he lets me know that he isnt sure about the chiari. At least he is honest and listens to me, and doesn't make me feel crazy. Thank you for your response and support, and I hope each day you feel a little better.
I had a second opinion with a neuro in my area about 5 years ago, the exam was horrible (had me hyperventilate for one thing to see if all my symptoms were d/t anxiety etc), and he said that lots of women my age suffer from anxiety/depression and offered me Lexapro which I declined. I'm already on elavil low dose for the migraines. My pcp said he disagrees and i'm not depressed, and i know i'm not. When I came home that day I watched the videos on tci's website they had just put them up i think as i hadn't seen them before. Those videos saved me. Why would he dismiss me that way, ugh. My neurologist that see's me is not like that guy, he never mentioned anxiety/depression, and he lets me know that he isnt sure about the chiari. At least he is honest and listens to me, and doesn't make me feel crazy. Thank you for your response and support, and I hope each day you feel a little better.
I have had the same thing and the eye thing too. Mine happens on the right side and CT and/or MRI showed chronic sinusitis worse on the right side. I was diagnosed and undiagnosed with Chiari several times because my herniation was 0-1mm. But the number doesn't always matter.
I had decompression surgery 4 weeks ago and Dr Oro said that my Chiari was far worse than any of my studies showed (and I have had about a dozen MRI's in the past 9 months). And on the right side it was worse and there was a lumpr or something and some nerve damage and basically more pressure on teh right side which makes me wonder if that is why my "migraines" always were worse behind my right eye.
I remember Dr Oro talking to me in the hospital 3-4 times but because of all the meds I can only remember bits and pieces of what he said. Hopefully you can get some answers about the Chiari and it will help with everything else.
I had decompression surgery 4 weeks ago and Dr Oro said that my Chiari was far worse than any of my studies showed (and I have had about a dozen MRI's in the past 9 months). And on the right side it was worse and there was a lumpr or something and some nerve damage and basically more pressure on teh right side which makes me wonder if that is why my "migraines" always were worse behind my right eye.
I remember Dr Oro talking to me in the hospital 3-4 times but because of all the meds I can only remember bits and pieces of what he said. Hopefully you can get some answers about the Chiari and it will help with everything else.
COMMUNITY LEADER
Hi,
If you do not have faith in ur dr, then look to another one that u feel comfortable with.Everyone will have different results from surgery and making sure u have a chiari specialist will help.Ask what the % of recovery is....what the expected outcome.Depending on ur symptoms u may not be a surgical candidate....but u must be comfortable or u will not respond well.
Speak with ur dr....ask questions.Make sure he/she is a chiari specialist.Understand all surgeries can end up with less than desirable results....chiari is not curable.
Below I havew copied and pasted info from wikapedia on the meds u asked about.
Gabapentin (brand name Neurontin) is a GABA analogue. It was originally developed for the treatment of epilepsy, and currently, gabapentin is widely used to relieve pain, especially neuropathic pain.
This drug is used to treat epilepsy in both children and adults. In many cases it can also be used as an antidepressant, most of the time for depressive realism. In children it is also indicated for treatment of Lennox-Gastaut syndrome (a disorder that causes seizures and developmental delay). It is also Food and Drug Administration (FDA) approved for, and now most frequently prescribed for, the prevention of migraines. It has been used by psychiatrists to treat bipolar disorder,[6][7][8] although it is not FDA approved for this purpose. This drug has been investigated for use in treatment of obesity,[9][10] especially to aid in the reduction of binge eating,[11][12] and also as a possible treatment for alcoholism.[13][14] However, these uses are not actively promoted by the manufacturer, and like its use for bipolar disorder, are off-label uses.
Topiramate (brand name Topamax) is an anticonvulsant drug produced by Ortho-McNeil Neurologics and Noramco, Inc., both being divisions of Johnson & Johnson. It was discovered in 1979 by Drs. Bruce E. Maryanoff and Joseph F. Gardocki during their research work at McNeil Pharmaceutical.[1][2][3] Generic versions are available in Canada and were FDA approved in September 2006. Mylan Pharmaceuticals was recently granted final approval for generic topiramate 25, 100, and 200 mg tablets and sprinkle capsules by the FDA for sale in the US. 50 mg tablets were granted tentative approval. [4] The only patent left for topiramate in the U.S. is for pediatric use; this patent will expire on February 28, 2009.
The drug is also used in clinical trials to treat Post Traumatic Stress Disorder.[15] A pilot study suggests that Topiramate is possibly effective against infantile spasms.[16] A study by Harvard recommends topiramate as an effective treatment in the prevention of Periventricular leukomalacia in preterm infants after an hypoxic-ischemic injury.[17] In May 2006 the U.S. National Institutes of Health web site clinicaltrials.gov listed several studies sponsored by Ortho-McNeil which propose to examine the use of topiramate on migraine, cluster,[18] and severe headaches within various demographics. Other off-label and investigational uses of topiramate include: treatment of bulimia nervosa,[19] obsessive-compulsive disorder, treatment of alcoholism,[20] smoking cessation,[21] Pseudotumor Cerebri, and treatment of neuropathic pain.[22
"selma"
If you do not have faith in ur dr, then look to another one that u feel comfortable with.Everyone will have different results from surgery and making sure u have a chiari specialist will help.Ask what the % of recovery is....what the expected outcome.Depending on ur symptoms u may not be a surgical candidate....but u must be comfortable or u will not respond well.
Speak with ur dr....ask questions.Make sure he/she is a chiari specialist.Understand all surgeries can end up with less than desirable results....chiari is not curable.
Below I havew copied and pasted info from wikapedia on the meds u asked about.
Gabapentin (brand name Neurontin) is a GABA analogue. It was originally developed for the treatment of epilepsy, and currently, gabapentin is widely used to relieve pain, especially neuropathic pain.
This drug is used to treat epilepsy in both children and adults. In many cases it can also be used as an antidepressant, most of the time for depressive realism. In children it is also indicated for treatment of Lennox-Gastaut syndrome (a disorder that causes seizures and developmental delay). It is also Food and Drug Administration (FDA) approved for, and now most frequently prescribed for, the prevention of migraines. It has been used by psychiatrists to treat bipolar disorder,[6][7][8] although it is not FDA approved for this purpose. This drug has been investigated for use in treatment of obesity,[9][10] especially to aid in the reduction of binge eating,[11][12] and also as a possible treatment for alcoholism.[13][14] However, these uses are not actively promoted by the manufacturer, and like its use for bipolar disorder, are off-label uses.
Topiramate (brand name Topamax) is an anticonvulsant drug produced by Ortho-McNeil Neurologics and Noramco, Inc., both being divisions of Johnson & Johnson. It was discovered in 1979 by Drs. Bruce E. Maryanoff and Joseph F. Gardocki during their research work at McNeil Pharmaceutical.[1][2][3] Generic versions are available in Canada and were FDA approved in September 2006. Mylan Pharmaceuticals was recently granted final approval for generic topiramate 25, 100, and 200 mg tablets and sprinkle capsules by the FDA for sale in the US. 50 mg tablets were granted tentative approval. [4] The only patent left for topiramate in the U.S. is for pediatric use; this patent will expire on February 28, 2009.
The drug is also used in clinical trials to treat Post Traumatic Stress Disorder.[15] A pilot study suggests that Topiramate is possibly effective against infantile spasms.[16] A study by Harvard recommends topiramate as an effective treatment in the prevention of Periventricular leukomalacia in preterm infants after an hypoxic-ischemic injury.[17] In May 2006 the U.S. National Institutes of Health web site clinicaltrials.gov listed several studies sponsored by Ortho-McNeil which propose to examine the use of topiramate on migraine, cluster,[18] and severe headaches within various demographics. Other off-label and investigational uses of topiramate include: treatment of bulimia nervosa,[19] obsessive-compulsive disorder, treatment of alcoholism,[20] smoking cessation,[21] Pseudotumor Cerebri, and treatment of neuropathic pain.[22
"selma"
Hi Selma,
What are these two meds and their effects topamax and neurontin? I too have been diagnosed with ACM 1 w/ a 7mm herniation and DDD with cervical spinal stenosis.
Considering to cancel my decompression due too so much negative effects of it. Please send me some info on these 2 meds so I can discuss with my nuerosurgeon.
JewelsIbarra
What are these two meds and their effects topamax and neurontin? I too have been diagnosed with ACM 1 w/ a 7mm herniation and DDD with cervical spinal stenosis.
Considering to cancel my decompression due too so much negative effects of it. Please send me some info on these 2 meds so I can discuss with my nuerosurgeon.
JewelsIbarra
COMMUNITY LEADER
Julie,
U r Welcome.....I hope the meds help....I am sure TCI will be a good place to go, as it is where I choose to send all my info as well!!
U can PM me netime....
"selma"
U r Welcome.....I hope the meds help....I am sure TCI will be a good place to go, as it is where I choose to send all my info as well!!
U can PM me netime....
"selma"
Hi Selma, No IBS. I'm thinking I can try the Topamax and see how it goes, but I think like with all the others it takes a while to start working. I just remembered he hasn't seen my mri of cervical and thoracic spine yet so will bring those films too. I also have to remember to ask for the radiology report, i like to keep copies.
I emailed TCI (had emailed 2 NPs and Dr. Bolognese) I think a lot of people are off this week. Maybe they can get me in soon, early spring maybe. I'm scared about permanent damage. Headache continues with left side numbness, nausea that continues with compazine and pulsation in the back of my neck into my head. Thank you for your responses, it really helps to vent about all of this and hear others are going through it too. - Julie
I emailed TCI (had emailed 2 NPs and Dr. Bolognese) I think a lot of people are off this week. Maybe they can get me in soon, early spring maybe. I'm scared about permanent damage. Headache continues with left side numbness, nausea that continues with compazine and pulsation in the back of my neck into my head. Thank you for your responses, it really helps to vent about all of this and hear others are going through it too. - Julie
COMMUNITY LEADER
I am glad to hear u r eating and appear to be feeling better.
I must ask if u have IBS issues...because I was on gabapentin the generic of neurontin and it did cause issues with my IBS and my gastro dr said I should not have been put on it by my sleep clinic dr.
I also suggest u find a NS that is a chiari specialist...I think u will see a differenc in ur care.
"selma"
I must ask if u have IBS issues...because I was on gabapentin the generic of neurontin and it did cause issues with my IBS and my gastro dr said I should not have been put on it by my sleep clinic dr.
I also suggest u find a NS that is a chiari specialist...I think u will see a differenc in ur care.
"selma"
My pcp put me on compazine which is helping if I take it every 6 hours. I am not to go to work the rest of the week (which is good and I can't drive on this compazine, sedation is getting to me but i'm eating more now! My neurologist fit me in for friday and mentioned topamax when he called me but that drug scares me. Would increasing elavil help? What about Neurontin. I think my insurance will give a hassel with topamax, but neurontin i should be ok. Thank you both for your support. It means so much, beyond words....
Welcome
I understand what you are going through. My left eyes always feels like there is alot of pressure behind it, and my nose is always stuffy. There have been times when I have woke up and my eye has been swollen almost to the point of closing. I have asked my ENT dr and he said there is nothing there. I take nasal sprays which don't help at all.
Vetigo is a huge problem for me, always feel like I'm falling backwards.
Just wanted you to know that your not alone. I have seen 3 Neurologist in the last 6 months and 1 Neuro surgeon, I haven't found the right answer yet. Write out all your sythoms and take them with you to the dr. this way you won't forget any of them. And the dr can put a copy in your file. I have trouble remembering all the symthoms and the dr ask the same questions. Just found it easier to write them out. If something new shows up I add it to the list.
Let us know how your doctor visit goes.
I understand what you are going through. My left eyes always feels like there is alot of pressure behind it, and my nose is always stuffy. There have been times when I have woke up and my eye has been swollen almost to the point of closing. I have asked my ENT dr and he said there is nothing there. I take nasal sprays which don't help at all.
Vetigo is a huge problem for me, always feel like I'm falling backwards.
Just wanted you to know that your not alone. I have seen 3 Neurologist in the last 6 months and 1 Neuro surgeon, I haven't found the right answer yet. Write out all your sythoms and take them with you to the dr. this way you won't forget any of them. And the dr can put a copy in your file. I have trouble remembering all the symthoms and the dr ask the same questions. Just found it easier to write them out. If something new shows up I add it to the list.
Let us know how your doctor visit goes.
COMMUNITY LEADER
Hi and welcome...yes sinus issues r related to ur chiari.Also ,the vomitting can most likely be attributed to vertigo....
I know there r many members with similar symptoms...and will pop inand offer some suggestions.Please be patient...if u have ne other questions please feel free to ask.
This is a great place for info and support.I hope u become an active member of our community and share your chiari experiences.
"selma"
I know there r many members with similar symptoms...and will pop inand offer some suggestions.Please be patient...if u have ne other questions please feel free to ask.
This is a great place for info and support.I hope u become an active member of our community and share your chiari experiences.
"selma"
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