hi there nikkiBlu. i came across your blog about 3 weeks ago when i googled lumber punch, as i was scheduled to have one done. i have a blood clot in my brain, which also causes hypertension. i had the lp done, and my pressure was more than 300, in short more than 30, as you know that's way more than it should be, so they also drained some csf. it was the most painful thing i have ever experienced in my whole life, i can only imagine what you must feel like getting it done so much! after the lp, my hypertension went from high hypertension to low hypertension, which was just awful, both caused extreme headaches! please keep me updated on your progress? e-mail me on miaespe06@yahoo.com . hope 2 hear from you soon, and be strong! keep well!!! Adri... ps: i am using my mother's google account, that is why her photo and account shows...
Hi Nikkiblu, i've just been diagnosed with intercranial hypertension after 3 years of major headaches. I've only just had my first Lumbar and my pressures were 33, however i had a leak and was back in hospital days later and now still havin back pain. Any way i'll get to my point, that is thank you for posting what is going on with you as i can not find much at all on the web about it and the only thing the doctors say is we will try pills then lumbars then surgery but not to worry. Well my email is guyclaire@ymail.com if u ever fancy comparing notes hope your not so bad today xxx
I came across this watching one of your vids on youtube. I was diagnosed with this horrible condition in March 09 back in NZ. I have had numerous LPs and been on meds from day one and they all make you feel revolting. I am meeting with a Neuro this coming friday here in Melb where I now live, and to be honest I am terrified. I really dont want to have surgery on my brain. Any feedback on how it went for you and how long your stay was?
Hope to hear from you soon my email is themoyesfamily22@bigpond.com
Hi Nikki. I too have BIH. I found a study that says caffeine increases CSF production over several days after consumption. I quit drinking caffeine (completely!) and I feel about 80% better. Most of my symptoms are gone. Please try this yourself and let me know how it works for you. I have found now that just a single drink of a caffeinated beverage will bring my symptoms back for 2-3 days, so be strong and stay away from it! Don't quit cold turkey though because that will potentially give you some horrible headaches. BTW, my neurologist agrees that this theory could make sense. :)
Hey there Nikkiblu! I have to send this in 2 parts cuz I wrote too much... My name is Leah and i am from the us, wisconsin to be exact. I am so happy I came across ur video. I never new anything about this up until recently. A couple yrs back my sister let one of my nephew's friends come live with her after she got pregnant and really didnt have any family support. She lived there for a while then moved back to Ohio which is about 13hrs from where we live. They both lost contact as many do when someone moves away & continue on with there lives. Anyways to the point, my sister & her talked recently to catch on thing and my sister found out she was really really sick. She had some horrible headaches that werent going away and was starting to completely debilitate her. She just found out she has IH. After talking with her a bit & finding out her symptoms & how this had been affecting her, my sister had to call me right away bcuz everything this other girl had said sounded exactly like me. And this is my story...My battle with horrible headaches started about the age of 12. But before the headaches started I was having black outs. Everything would get completely black & I would just pass out. Usually appx 30-45sec after getting up. This started happening pretty frequently & then one day I had gotten up off the couch & was going to go upstairs, but had to pass by the basement stairs to do so. I got up & as I got to the stairs everything went black until I woke up midway down the basement stairs, passed right back out & woke up underneath the gate at the bottom of the stairs. Shortly after that the headaches started. Now I didnt know if they started bcuz of the fall or if it was just a coincidence since The black outs had just started. I started seeing neurologists, having test after test, just to find nothing. The started classifying them as migraines which started me on the millions of different meds train. But nothing helped. After doing this for a few different years I got sick of going to all these doctors, getting all these test and being on a bunch a meds that did absolutely nothing to help me, but make me feel worse than I already did I finally decided to stop seeing any doctors and to just deal with it. Then When I was appx 16 The headaches got worse. They went from being a daily headache(would get everyday, but at least went away everyday) to one that last a week straight then to one that last couple weeks at a time. This started becoming a frequent thing so it was back to the drs and tests and meds. Again after nothing helping and still no answers I stopped seeing my neurologist. I didnt see anyone until feb 2004 when my whole world turned upside down. I was about 22 yrs old. I got the worst headache of my life that still to this day has never gone away. It got so bad that I was no longer able to care for myself & had to move back into my parents house from them to care for me. I didnt get out of bed for about 3-4months straight. I barely ate cuz I was SO sick to my stomach. I had starting going to the emergency rm a couple times a week bcuz my mom didnt know what else to do with me even if it never did anything good. All they would do is fill me up with the heaviest drugs they could, but it would never even touch the pain, but I sure I dont have to tell you how that goes...It felt like sharp stabbing pain or like I had my own little construction crew working & jack hammering in my head. I didnt was to live anymore. I never I would never kill myself, but didnt know how to keep hanging on. My mother would say it would take everything just to get me through the day just to wake up after a few uncomfortable hours asleep & then we would have to start all over again.
cont... I lost so many friends cuz the didnt understand. Went to so many drs at this time and was on so many different pain killers that I turned into a person I didnt even recognize. My sister said she thought she had lost her sister. After time I eventually started getting use to the pain and started trying to have a life again. But a lot of the time I would be down for weeks @ a time. I was on and off of work with disability leave and eventually even tried to move to Arizona with is a much warmer, dryer climate. Rain always makes it worse, I can usually tell the night before it's about to rain. And it did help, but not enough bcuz even though my bad spout was not as often, when it was though I would be down and out, but I didnt have the care that I needed. While living out there I became really really ill again and soon found out that my boyfriend and I were going to be having a baby. I was so happy, but frightened a the same time. I thought how can I be someones mom when at times I cant even take care of myself??? My pregnancy was horrible! It was like my body knew instantly (even before me) and there was nothing that I could even try taking for it. Even when I went into labor we have a pic of me with an ice pack on my head because my headache was so bad. I was freaking out about having to push him out bcuz I new how bad it was going to make my head hurt. I had an epideral while in labor which lead to something they call a spinal headache, which some people get from having the epideral. You cant event sit p with this, the only thing that makes it better is laying down & the only way for it to go away is by something they call a blood patch. They draw blood from your arm and put it back into the epideral injection site. The first one didnt completely help so they did another one and they crazy part was for a few minutes I didnt have a headache for the first time in 4 1/2 yrs. But that was short lived and then my headache went back to normal. Not to a epideral spinal headache, but my normal one. Thing got a little better for me afer I had my son, but my headaches were still pretty bad compared to want a normal person's headache level would be. I believe the only reason I was feeling a little better was from not being on all the drugs meds they were throwing at me. My headaches have just been something I have learned to deal with, but is a very hard way of life to life as you have experienced. I had not seen a neurologist since i had my son 3 yrs ago u until recently. A brother of someone I know has also had horrible headaches that never go away for the last 15 yrs and he was seeing this dr that helped him & his headaches by doing cortisone shots in the neck & head. It has yet to help me though. It was a huge disappointment. I felt like maybe for the first time in all these yrs we were onto something, but I guess not. Then my sister had me check out the IH foundation's website and started reading and felt like wow, there's actually other people out there like me. Reading all the symptoms made me feel like I was looking into a mirror. Like all the things I had been telling all these dr's for years was sitting right in front of me. I have always mentioned different thins to dr's whether I thought it was related or not in hopes something would stand out to them, but it was like the were never listening. My mother & I have been saying for yrs all of these things have got to some how be related. I have gone to some of the best neurologist, is is possible that they could have overlooked something like this? I read all the symptoms you had listed and I have all but 2 of them plus other they had listed on the website. I know this is a pretty long msg, but as scary as all this could be be, it would be great to have some kind of explanation for all these horrible things that have been going on for most of my life now. I would love to hear from you! -Leah
I am not sure if anyone still reads this, or if anyone has time to read my story, it is very long and very complicated, but I have posted it if anyone wants to read it!
This is me getting the dots on my head for a MRI to mark the spots where they will cut me for my surgery .
8 comments:
hi there nikkiBlu. i came across your blog about 3 weeks ago when i googled lumber punch, as i was scheduled to have one done. i have a blood clot in my brain, which also causes hypertension. i had the lp done, and my pressure was more than 300, in short more than 30, as you know that's way more than it should be, so they also drained some csf. it was the most painful thing i have ever experienced in my whole life, i can only imagine what you must feel like getting it done so much! after the lp, my hypertension went from high hypertension to low hypertension, which was just awful, both caused extreme headaches! please keep me updated on your progress? e-mail me on miaespe06@yahoo.com . hope 2 hear from you soon, and be strong! keep well!!! Adri... ps: i am using my mother's google account, that is why her photo and account shows...
Hi Nikkiblu, i've just been diagnosed with intercranial hypertension after 3 years of major headaches. I've only just had my first Lumbar and my pressures were 33, however i had a leak and was back in hospital days later and now still havin back pain. Any way i'll get to my point, that is thank you for posting what is going on with you as i can not find much at all on the web about it and the only thing the doctors say is we will try pills then lumbars then surgery but not to worry. Well my email is guyclaire@ymail.com if u ever fancy comparing notes hope your not so bad today xxx
Hello there!
I came across this watching one of your vids on youtube. I was diagnosed with this horrible condition in March 09 back in NZ.
I have had numerous LPs and been on meds from day one and they all make you feel revolting. I am meeting with a Neuro this coming friday here in Melb where I now live, and to be honest I am terrified. I really dont want to have surgery on my brain. Any feedback on how it went for you and how long your stay was?
Hope to hear from you soon my email is themoyesfamily22@bigpond.com
Hi Nikki. I too have BIH. I found a study that says caffeine increases CSF production over several days after consumption. I quit drinking caffeine (completely!) and I feel about 80% better. Most of my symptoms are gone. Please try this yourself and let me know how it works for you. I have found now that just a single drink of a caffeinated beverage will bring my symptoms back for 2-3 days, so be strong and stay away from it! Don't quit cold turkey though because that will potentially give you some horrible headaches. BTW, my neurologist agrees that this theory could make sense. :)
Hey there Nikkiblu! I have to send this in 2 parts cuz I wrote too much... My name is Leah and i am from the us, wisconsin to be exact. I am so happy I came across ur video. I never new anything about this up until recently. A couple yrs back my sister let one of my nephew's friends come live with her after she got pregnant and really didnt have any family support. She lived there for a while then moved back to Ohio which is about 13hrs from where we live. They both lost contact as many do when someone moves away & continue on with there lives. Anyways to the point, my sister & her talked recently to catch on thing and my sister found out she was really really sick. She had some horrible headaches that werent going away and was starting to completely debilitate her. She just found out she has IH. After talking with her a bit & finding out her symptoms & how this had been affecting her, my sister had to call me right away bcuz everything this other girl had said sounded exactly like me.
And this is my story...My battle with horrible headaches started about the age of 12. But before the headaches started I was having black outs. Everything would get completely black & I would just pass out. Usually appx 30-45sec after getting up. This started happening pretty frequently & then one day I had gotten up off the couch & was going to go upstairs, but had to pass by the basement stairs to do so. I got up & as I got to the stairs everything went black until I woke up midway down the basement stairs, passed right back out & woke up underneath the gate at the bottom of the stairs. Shortly after that the headaches started. Now I didnt know if they started bcuz of the fall or if it was just a coincidence since The black outs had just started. I started seeing neurologists, having test after test, just to find nothing. The started classifying them as migraines which started me on the millions of different meds train. But nothing helped. After doing this for a few different years I got sick of going to all these doctors, getting all these test and being on a bunch a meds that did absolutely nothing to help me, but make me feel worse than I already did I finally decided to stop seeing any doctors and to just deal with it. Then When I was appx 16 The headaches got worse. They went from being a daily headache(would get everyday, but at least went away everyday) to one that last a week straight then to one that last couple weeks at a time. This started becoming a frequent thing so it was back to the drs and tests and meds. Again after nothing helping and still no answers I stopped seeing my neurologist. I didnt see anyone until feb 2004 when my whole world turned upside down. I was about 22 yrs old. I got the worst headache of my life that still to this day has never gone away. It got so bad that I was no longer able to care for myself & had to move back into my parents house from them to care for me. I didnt get out of bed for about 3-4months straight. I barely ate cuz I was SO sick to my stomach. I had starting going to the emergency rm a couple times a week bcuz my mom didnt know what else to do with me even if it never did anything good. All they would do is fill me up with the heaviest drugs they could, but it would never even touch the pain, but I sure I dont have to tell you how that goes...It felt like sharp stabbing pain or like I had my own little construction crew working & jack hammering in my head. I didnt was to live anymore. I never I would never kill myself, but didnt know how to keep hanging on. My mother would say it would take everything just to get me through the day just to wake up after a few uncomfortable hours asleep & then we would have to start all over again.
cont... I lost so many friends cuz the didnt understand. Went to so many drs at this time and was on so many different pain killers that I turned into a person I didnt even recognize. My sister said she thought she had lost her sister. After time I eventually started getting use to the pain and started trying to have a life again. But a lot of the time I would be down for weeks @ a time. I was on and off of work with disability leave and eventually even tried to move to Arizona with is a much warmer, dryer climate. Rain always makes it worse, I can usually tell the night before it's about to rain. And it did help, but not enough bcuz even though my bad spout was not as often, when it was though I would be down and out, but I didnt have the care that I needed. While living out there I became really really ill again and soon found out that my boyfriend and I were going to be having a baby. I was so happy, but frightened a the same time. I thought how can I be someones mom when at times I cant even take care of myself??? My pregnancy was horrible! It was like my body knew instantly (even before me) and there was nothing that I could even try taking for it. Even when I went into labor we have a pic of me with an ice pack on my head because my headache was so bad. I was freaking out about having to push him out bcuz I new how bad it was going to make my head hurt. I had an epideral while in labor which lead to something they call a spinal headache, which some people get from having the epideral. You cant event sit p with this, the only thing that makes it better is laying down & the only way for it to go away is by something they call a blood patch. They draw blood from your arm and put it back into the epideral injection site. The first one didnt completely help so they did another one and they crazy part was for a few minutes I didnt have a headache for the first time in 4 1/2 yrs. But that was short lived and then my headache went back to normal. Not to a epideral spinal headache, but my normal one. Thing got a little better for me afer I had my son, but my headaches were still pretty bad compared to want a normal person's headache level would be. I believe the only reason I was feeling a little better was from not being on all the drugs meds they were throwing at me. My headaches have just been something I have learned to deal with, but is a very hard way of life to life as you have experienced. I had not seen a neurologist since i had my son 3 yrs ago u until recently. A brother of someone I know has also had horrible headaches that never go away for the last 15 yrs and he was seeing this dr that helped him & his headaches by doing cortisone shots in the neck & head. It has yet to help me though. It was a huge disappointment. I felt like maybe for the first time in all these yrs we were onto something, but I guess not. Then my sister had me check out the IH foundation's website and started reading and felt like wow, there's actually other people out there like me. Reading all the symptoms made me feel like I was looking into a mirror. Like all the things I had been telling all these dr's for years was sitting right in front of me. I have always mentioned different thins to dr's whether I thought it was related or not in hopes something would stand out to them, but it was like the were never listening. My mother & I have been saying for yrs all of these things have got to some how be related. I have gone to some of the best neurologist, is is possible that they could have overlooked something like this? I read all the symptoms you had listed and I have all but 2 of them plus other they had listed on the website. I know this is a pretty long msg, but as scary as all this could be be, it would be great to have some kind of explanation for all these horrible things that have been going on for most of my life now. I would love to hear from you!
-Leah
Hi Nikkiblu! I hope you are well!
I am not sure if anyone still reads this, or if anyone has time to read my story, it is very long and very complicated, but I have posted it if anyone wants to read it!
Hope on to hope, all!
http://mdcowgirl.blogspot.com/2012/08/pseudotumor-my-experiencein-detail.html
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