Comments on: About Me http://lifewithndph.com Just another WordPress.com weblog Wed, 14 Jul 2010 03:45:17 +0000 hourly 1 http://wordpress.com/ By: Bob http://lifewithndph.com/about/#comment-284 Bob Fri, 12 Mar 2010 13:15:53 +0000 #comment-284 Hi Amy, A common cause of NDPH is low csf (cranial spinal fluid) pressure. Sufferers may notice a reduction in the headache some time after lying down. If that is the case then you may have a low csf pressure headache. This can be caused by and epidural. If you have had an epidural in the past you may well have this issue. However there are also cases of people who get spontaneous low csf pressure, divers, pilots or even those sneezing or clearing their ears on a plane can get this condition. Often sufferers can remember almost exactly when the headaches started or what they were doing. If this sounds like you, try high dosages of caffeine, really, it actually works. If taking 2 triple shot starbucks coffees provides a significant reduction or elimination of pain then here are some treatments you can try: doxycycline / singulair combo therapy epidural blood patch, if this fails you may need to find the exact location of the csf leak and directly target it. caffeine drip 500 cc over 2 hours followed by two weeks bed rest Hope this may help Cheers Bob Hi Amy,
A common cause of NDPH is low csf (cranial spinal fluid) pressure. Sufferers may notice a reduction in the headache some time after lying down. If that is the case then you may have a low csf pressure headache. This can be caused by and epidural. If you have had an epidural in the past you may well have this issue. However there are also cases of people who get spontaneous low csf pressure, divers, pilots or even those sneezing or clearing their ears on a plane can get this condition. Often sufferers can remember almost exactly when the headaches started or what they were doing. If this sounds like you, try high dosages of caffeine, really, it actually works. If taking 2 triple shot starbucks coffees provides a significant reduction or elimination of pain then here are some treatments you can try:
doxycycline / singulair combo therapy
epidural blood patch, if this fails you may need to find the exact location of the csf leak and directly target it.
caffeine drip 500 cc over 2 hours followed by two weeks bed rest
Hope this may help
Cheers
Bob

]]> By: Amy http://lifewithndph.com/about/#comment-283 Amy Wed, 10 Mar 2010 14:09:40 +0000 #comment-283 Hi David, I'm glad to hear that you found some comfort here and thank you for sharing your story. I am about to hit the 5 year mark with NDPH, and I cannot imagine what it must be like for you, having dealt with this pain for 14 years. I can related to the ups and downs you feel. I have days when I can forget the pain and I can behave as if I am completely normal and like everyone else. And I have the bad days too, and I wonder if this is going to go on forever and if it does, how can I deal with it? I hope you are having a low pain day today and feeling a little better - Amy Hi David,

I’m glad to hear that you found some comfort here and thank you for sharing your story. I am about to hit the 5 year mark with NDPH, and I cannot imagine what it must be like for you, having dealt with this pain for 14 years.
I can related to the ups and downs you feel. I have days when I can forget the pain and I can behave as if I am completely normal and like everyone else. And I have the bad days too, and I wonder if this is going to go on forever and if it does, how can I deal with it?
I hope you are having a low pain day today and feeling a little better –
Amy

]]> By: David http://lifewithndph.com/about/#comment-281 David Tue, 09 Mar 2010 00:37:52 +0000 #comment-281 Hey Amy, Really great site you have here - am so glad taht I found it. I'm really encouraged by so many of your words. I'm also so sorry to hear that you have NDPH - I really can sympathise - my journey with this started 14 years ago when I was 13 and I still have the headache to this day - pressing down on me. After so many hospital consultants, pain medication and other therapies, I feel as though I've just about given up on this - some days i really don't have the energy to go on. I managed to get through university and I have a job at the moment that I really enjoy. There are some days that I even forget that the pain is there. But it's relentless. Feeling particularly depressed and low about it today (hence my stumbling across your site!). Hoping that we can all find some relief... David Hey Amy,
Really great site you have here – am so glad taht I found it. I’m really encouraged by so many of your words. I’m also so sorry to hear that you have NDPH – I really can sympathise – my journey with this started 14 years ago when I was 13 and I still have the headache to this day – pressing down on me. After so many hospital consultants, pain medication and other therapies, I feel as though I’ve just about given up on this – some days i really don’t have the energy to go on. I managed to get through university and I have a job at the moment that I really enjoy. There are some days that I even forget that the pain is there. But it’s relentless. Feeling particularly depressed and low about it today (hence my stumbling across your site!). Hoping that we can all find some relief…

David

]]> By: Amy http://lifewithndph.com/about/#comment-275 Amy Tue, 02 Mar 2010 18:50:36 +0000 #comment-275 Hi Lindsay, I'm so sorry to hear your story. I understand what you are going through, in so many ways. Generally, other people will not get what you are going through. I have found they get tired of hearing about my headache, even though I rarely talk about it. They prefer to act as if it isn't here (but it is) and that I am fine (simply pretending as best I can). Hang in there, give the hospital stay a shot. You have nothing to lose, right? As long as there are no major side effects expected from the pain meds, I am sure you could use the break from the pain. NDPH is incredibly frustrating, but you have to keep trying. Have you tried the all-natural route yet? You may be able to find some "pain management" success with acupuncture, a vegan diet, chinese medicine....hey you never know! Everything is worth a try, in my opinion. Please feel free to come here and vent anytime. I (and all the readers) understand and I'm here to help in any way that I can. Amy Hi Lindsay,
I’m so sorry to hear your story. I understand what you are going through, in so many ways. Generally, other people will not get what you are going through. I have found they get tired of hearing about my headache, even though I rarely talk about it. They prefer to act as if it isn’t here (but it is) and that I am fine (simply pretending as best I can).
Hang in there, give the hospital stay a shot. You have nothing to lose, right? As long as there are no major side effects expected from the pain meds, I am sure you could use the break from the pain.
NDPH is incredibly frustrating, but you have to keep trying. Have you tried the all-natural route yet? You may be able to find some “pain management” success with acupuncture, a vegan diet, chinese medicine….hey you never know! Everything is worth a try, in my opinion.
Please feel free to come here and vent anytime. I (and all the readers) understand and I’m here to help in any way that I can.
Amy

]]> By: Lindsay http://lifewithndph.com/about/#comment-274 Lindsay Tue, 02 Mar 2010 17:47:26 +0000 #comment-274 April 28, 2007 was when my date with NDPH began and to this day and about 20 doctors and what feels like 100 different medications later - I am still in horrible pain. I've recently tried botox injection - no good for me, and nerve blocks - had relief for about 20 minutes. Overall its a very frustrating thing to deal with because its not as if I am looking for sympathy from people but rather for them to understand sometimes I just can't do things because my head hurts just that bad. I had nothing they can find that triggered my headaches which is even more reassuring (not at all). I was told it looks to be a pain management situation. My last option is to get admitted to the hospital where I see my specialist for 5 days and run every single test I have already had, but this time put me on a pain drip so i don't get a headache, this way they can compare before and afters and see if there are differences. I suffer everyday without catching a break from these stupid headaches but everyday laying in a hospital bed for a week looks more and more appealing even though I know there will be no answers, but at least for those few days I will be pain free. NDPH is horrible to live with and no one can understand the pain you go through and how it can change in severity one minute to the next. I'm glad to have finally stumbled upon this page and to see there are more people out there suffering just like me. April 28, 2007 was when my date with NDPH began and to this day and about 20 doctors and what feels like 100 different medications later – I am still in horrible pain. I’ve recently tried botox injection – no good for me, and nerve blocks – had relief for about 20 minutes. Overall its a very frustrating thing to deal with because its not as if I am looking for sympathy from people but rather for them to understand sometimes I just can’t do things because my head hurts just that bad. I had nothing they can find that triggered my headaches which is even more reassuring (not at all). I was told it looks to be a pain management situation. My last option is to get admitted to the hospital where I see my specialist for 5 days and run every single test I have already had, but this time put me on a pain drip so i don’t get a headache, this way they can compare before and afters and see if there are differences. I suffer everyday without catching a break from these stupid headaches but everyday laying in a hospital bed for a week looks more and more appealing even though I know there will be no answers, but at least for those few days I will be pain free. NDPH is horrible to live with and no one can understand the pain you go through and how it can change in severity one minute to the next. I’m glad to have finally stumbled upon this page and to see there are more people out there suffering just like me.

]]> By: Steve Roberts http://lifewithndph.com/about/#comment-94 Steve Roberts Thu, 31 Dec 2009 01:26:34 +0000 #comment-94 Hi Amy; Please, please, please write to me. I want to send you something. I think it will eliminate, or at least substantially reduce, your NDPH. I don't *know*, of course - but I do think. And, unless you're allergic to one of the ingredients, it's not going to harm you. Feel free to look around the website: www.doctorstevesbanjo.com Best wishes, Steve Hi Amy;

Please, please, please write to me. I want to send you something. I think it will eliminate, or at least substantially reduce, your NDPH.

I don’t *know*, of course – but I do think.

And, unless you’re allergic to one of the ingredients, it’s not going to harm you.

Feel free to look around the website: http://www.doctorstevesbanjo.com

Best wishes, Steve

]]> By: Dr Veritas Von Truthbottom http://lifewithndph.com/about/#comment-91 Dr Veritas Von Truthbottom Wed, 16 Dec 2009 02:13:17 +0000 #comment-91 I smell cow fecal matter. NDPH generally takes down young people and I fear that it is another sinister method that our elite friends in the parallel government are ensuring that people are not in a healthy, alert condition to oppose them. Maybe it was brought on by aspartame, monosodium glutamate or a childhood vaccination or maybe it was one of the other thousands of methods they are using to make us intentionally unhealthy. Perhaps we should be happy that we weren't struck with one of their cancer inducing chemical combinations found in cosmetics, GM foods or tap water. A mistake people make is to think that our unelected leaders are not capable of such atrocities, but I ask you to think for yourself and consider why 'they' would consider us, the 'bottom-feeders' any different to the peasants of any other country when it comes to their agenda. The truth is that we are talking about psychopathic entities who's eugenical dreams don't include the little fish with the junk genes who they fear will out breed their 'superior' stock. I ask you only to consider that perhaps NDPH was contrived in the same way as AIDS, the Ebola Virus, Avian Flu, Swine Flu and others were ie in a government laboratory. To the big boys, culling human beings is no different to culling sheep or cattle which is one of the many reasons that 'they' like to manufacture wars where hundreds of thousands step up to volunteer themselves for unnecessary slaughter. 'They' know exactly what causes NDPH in the high sciences and as usual they create the illusion that they are baffled by it's sudden existence. Cytokines, Tumor Necrosis factor blah blah..they claim to know it all but then where are all the tests they have promised for years to end this horrible blight on our lives? This will never be cured just like all the other auto-immune diseases that they put out there. It's a joke, really. I smell cow fecal matter. NDPH generally takes down young people and I fear that it is another sinister method that our elite friends in the parallel government are ensuring that people are not in a healthy, alert condition to oppose them. Maybe it was brought on by aspartame, monosodium glutamate or a childhood vaccination or maybe it was one of the other thousands of methods they are using to make us intentionally unhealthy. Perhaps we should be happy that we weren’t struck with one of their cancer inducing chemical combinations found in cosmetics, GM foods or tap water. A mistake people make is to think that our unelected leaders are not capable of such atrocities, but I ask you to think for yourself and consider why ‘they’ would consider us, the ‘bottom-feeders’ any different to the peasants of any other country when it comes to their agenda. The truth is that we are talking about psychopathic entities who’s eugenical dreams don’t include the little fish with the junk genes who they fear will out breed their ‘superior’ stock. I ask you only to consider that perhaps NDPH was contrived in the same way as AIDS, the Ebola Virus, Avian Flu, Swine Flu and others were ie in a government laboratory. To the big boys, culling human beings is no different to culling sheep or cattle which is one of the many reasons that ‘they’ like to manufacture wars where hundreds of thousands step up to volunteer themselves for unnecessary slaughter. ‘They’ know exactly what causes NDPH in the high sciences and as usual they create the illusion that they are baffled by it’s sudden existence. Cytokines, Tumor Necrosis factor blah blah..they claim to know it all but then where are all the tests they have promised for years to end this horrible blight on our lives? This will never be cured just like all the other auto-immune diseases that they put out there. It’s a joke, really.

]]> By: Amy http://lifewithndph.com/about/#comment-64 Amy Mon, 12 Oct 2009 02:10:14 +0000 #comment-64 Thanks Michael - I completely understand your frustration and will contact you directly. It would be great to have better information available to people about NDPH. Thanks Michael – I completely understand your frustration and will contact you directly. It would be great to have better information available to people about NDPH.

]]> By: Michael http://lifewithndph.com/about/#comment-62 Michael Thu, 08 Oct 2009 23:15:42 +0000 #comment-62 Pete and Amy, I posted on MDJunction about doing something as a group; creating a web site, brochure, SOMETHING to make this more tangible for people. In trying to explain this to my boss, who's been really understanding, I feel like I'm making it up as there's just no information I can provide other than a few things on the web. If you'd like to try to do something, write me at volmad98@gmail.com Michael Pete and Amy,

I posted on MDJunction about doing something as a group; creating a web site, brochure, SOMETHING to make this more tangible for people. In trying to explain this to my boss, who’s been really understanding, I feel like I’m making it up as there’s just no information I can provide other than a few things on the web. If you’d like to try to do something, write me at volmad98@gmail.com

Michael

]]> By: Amy http://lifewithndph.com/about/#comment-29 Amy Thu, 01 Oct 2009 00:08:08 +0000 #comment-29 Hi Pete, I'm so glad that this made you feel a little less alone. Your comment really struck me - that you feel like a fraud and like you should just get it together. I feel that way often too, but had never really thought it through. I think because our pain is invisible to the rest of the world, because most people can't understand how we can function at all with this type of headache, I worry about what people think. I imagine they think I am being dramatic or lazy. I feel like I must somehow be responsible. I hope that your pain eases up soon. Thank you so much for taking the time to comment. Hi Pete,

I’m so glad that this made you feel a little less alone. Your comment really struck me – that you feel like a fraud and like you should just get it together. I feel that way often too, but had never really thought it through.
I think because our pain is invisible to the rest of the world, because most people can’t understand how we can function at all with this type of headache, I worry about what people think. I imagine they think I am being dramatic or lazy. I feel like I must somehow be responsible.
I hope that your pain eases up soon. Thank you so much for taking the time to comment.

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