Comments on: Tell Your Story http://lifewithndph.com Just another WordPress.com weblog Wed, 14 Jul 2010 03:45:17 +0000 hourly 1 http://wordpress.com/ By: Amy http://lifewithndph.com/tell-your-story/#comment-379 Amy Wed, 14 Jul 2010 00:11:02 +0000 http://ndph.wordpress.com/?page_id=27#comment-379 Hi Carl, I wish I had some great advice for you. I think the fact that you are trying and that you are patient with her and her pain will be a very big help. I think the most difficult thing for many of us is that we feel alone in our pain, as if no one understands. It's constantly with us, yet, we don't usually talk about it constantly. I am sick of hearing myself complain about it. The forum at mdjunction (see link in sidebar) has a few spouses of NDPH sufferers that go there for support for themselves and to try to find solutions. They are always very welcoming. Also, taking the time to try to understand what she is going through, just that effort, would make many of us feel better. We don't all have someone who would even take the time to research the disease to understand what it is - and what it isn't. That would be a big deal to me. :) If there is anything else I can help you with or if you have any questions, please just ask! Hi Carl, I wish I had some great advice for you. I think the fact that you are trying and that you are patient with her and her pain will be a very big help. I think the most difficult thing for many of us is that we feel alone in our pain, as if no one understands. It’s constantly with us, yet, we don’t usually talk about it constantly. I am sick of hearing myself complain about it.
The forum at mdjunction (see link in sidebar) has a few spouses of NDPH sufferers that go there for support for themselves and to try to find solutions. They are always very welcoming.
Also, taking the time to try to understand what she is going through, just that effort, would make many of us feel better. We don’t all have someone who would even take the time to research the disease to understand what it is – and what it isn’t. That would be a big deal to me. :)
If there is anything else I can help you with or if you have any questions, please just ask!

]]> By: Amy http://lifewithndph.com/tell-your-story/#comment-377 Amy Tue, 13 Jul 2010 23:57:36 +0000 http://ndph.wordpress.com/?page_id=27#comment-377 I would love to turn this area into a forum somehow, but I'm not sure how to go about it. I will see if I can find a WordPress expert who can help! I hope that coming off of all the meds goes well for you. You may find out that they were doing nothing to help you after all. My doctor has never offered narcotics, though my dentist has given them to me. I admit it, I saved them! I take one every now and then when the pain gets unmanageable. It's the only thing that works, although they don't even get rid of the pain entirely. Wow, no allergies? That's great. At least that is one more thing you can cross off the list. I'm taking a cooking class this month called "Food for Life" which is designed for cancer survivors, but I think this type of diet should - in theory - help us too. Certain foods will work as an anti-inflammatory etc.. I will write about it soon, hopefully there will be something positive to take from it. I don't think I could tolerate having a machine stuck in me - the idea of it completely freaks me out. I guess that means the pain isn't bad enough these days, so that's a good thing. :) Keep us updated - and I'll look into getting some kind of forum on here! Thanks, Amy I would love to turn this area into a forum somehow, but I’m not sure how to go about it. I will see if I can find a WordPress expert who can help!
I hope that coming off of all the meds goes well for you. You may find out that they were doing nothing to help you after all. My doctor has never offered narcotics, though my dentist has given them to me. I admit it, I saved them! I take one every now and then when the pain gets unmanageable. It’s the only thing that works, although they don’t even get rid of the pain entirely.
Wow, no allergies? That’s great. At least that is one more thing you can cross off the list. I’m taking a cooking class this month called “Food for Life” which is designed for cancer survivors, but I think this type of diet should – in theory – help us too. Certain foods will work as an anti-inflammatory etc.. I will write about it soon, hopefully there will be something positive to take from it.
I don’t think I could tolerate having a machine stuck in me – the idea of it completely freaks me out. I guess that means the pain isn’t bad enough these days, so that’s a good thing. :) Keep us updated – and I’ll look into getting some kind of forum on here!
Thanks,
Amy

]]> By: Lindsay http://lifewithndph.com/tell-your-story/#comment-376 Lindsay Tue, 13 Jul 2010 18:36:35 +0000 http://ndph.wordpress.com/?page_id=27#comment-376 I went to see my Dr. today and asked him to take me off all my medicines and he wasn't thrilled with the idea, but understood why I wanted to do it. So slowly but surely under his guidance I will begin the decent to a medication free life style something I haven't had in 3 years. He told me about a new procedure they are doing for people who have headaches, a surgeon puts a pacemaker type machine in your upper chest area and there are "wires" that run to your optical nerves to stimulate them. I may have the actual function or some of the words mixed up, but thats a new solution apparently. He had a woman who was taking 7-9 prescription drugs a day, heavy duty ones and now she takes nothing. In addition I was also to have an echo by someone I work with because a friend of their's had one and ended up having a hole in their heart, once the hole was closed - the patient had no headaches anymore and originally suffering like all of us. My doctor also mentioned the option of using narcotic drugs or anti-psychosis drugs as a last resort- things are not looking up for us NDPH sufferers, seems that there is not one thing we can all do to get rid of these bad headaches, no cure, no solution, no simple quick fix. Very frustrating. I resume allergy testing thursday, but so far all negative. Amy - have you ever thought of turning this section of the site into a forum set up? May be easier to comment and talk to different people if there are topics posted, etc.. Just a thought. I went to see my Dr. today and asked him to take me off all my medicines and he wasn’t thrilled with the idea, but understood why I wanted to do it. So slowly but surely under his guidance I will begin the decent to a medication free life style something I haven’t had in 3 years. He told me about a new procedure they are doing for people who have headaches, a surgeon puts a pacemaker type machine in your upper chest area and there are “wires” that run to your optical nerves to stimulate them. I may have the actual function or some of the words mixed up, but thats a new solution apparently. He had a woman who was taking 7-9 prescription drugs a day, heavy duty ones and now she takes nothing. In addition I was also to have an echo by someone I work with because a friend of their’s had one and ended up having a hole in their heart, once the hole was closed – the patient had no headaches anymore and originally suffering like all of us. My doctor also mentioned the option of using narcotic drugs or anti-psychosis drugs as a last resort- things are not looking up for us NDPH sufferers, seems that there is not one thing we can all do to get rid of these bad headaches, no cure, no solution, no simple quick fix. Very frustrating. I resume allergy testing thursday, but so far all negative.

Amy – have you ever thought of turning this section of the site into a forum set up? May be easier to comment and talk to different people if there are topics posted, etc.. Just a thought.

]]> By: Amy http://lifewithndph.com/tell-your-story/#comment-364 Amy Thu, 24 Jun 2010 01:56:00 +0000 http://ndph.wordpress.com/?page_id=27#comment-364 Hi Bethany, I'm sorry for the delayed response. I hope by now you have started a course of treatment and are getting some pain relief. Your story is so similar to many I hear. NDPH patients are rarely diagnosed quickly, and unfortunately it is pretty difficult for most of us to find a treatment that works. Please feel free to contact me if you have any questions or could use a little support through this. Wishing you a pain free day, Amy Hi Bethany,
I’m sorry for the delayed response. I hope by now you have started a course of treatment and are getting some pain relief.
Your story is so similar to many I hear. NDPH patients are rarely diagnosed quickly, and unfortunately it is pretty difficult for most of us to find a treatment that works.
Please feel free to contact me if you have any questions or could use a little support through this.
Wishing you a pain free day,
Amy

]]> By: Amy http://lifewithndph.com/tell-your-story/#comment-363 Amy Thu, 24 Jun 2010 01:52:01 +0000 http://ndph.wordpress.com/?page_id=27#comment-363 Hi Michael, Thanks for the info - I need to follow up and see if my sphenoid sinus infection is gone or if it needs further treatment. I'm thinking it needs more treatment, and I am wondering if this is what triggered my headache initially. I'm so glad to hear that you have gotten back to your life! I think we appreciate being able to get through the day more than most people! I hope you continue to keep the pain down. And keep us updated from time to time on how things are going! Best, Amy Hi Michael,
Thanks for the info – I need to follow up and see if my sphenoid sinus infection is gone or if it needs further treatment. I’m thinking it needs more treatment, and I am wondering if this is what triggered my headache initially.
I’m so glad to hear that you have gotten back to your life! I think we appreciate being able to get through the day more than most people! I hope you continue to keep the pain down. And keep us updated from time to time on how things are going!
Best,
Amy

]]> By: Amy http://lifewithndph.com/tell-your-story/#comment-362 Amy Thu, 24 Jun 2010 00:26:28 +0000 http://ndph.wordpress.com/?page_id=27#comment-362 Hi Lindsay, I have been off medication for about 6 months now and I am doing pretty well. I recently passed the 5 year mark with NDPH and I can say that I am definitely better this year than I was in the first two or three. I have weeks that are bad, days that are awful, but then I have a fair amount of time that I am functional enough to work and care for my kids, so I guess I'm doing better than is typically expected. I get really sick of taking meds that have side effects and don't seem to help my head very much. Sometimes it is just easier to deal with the pain for as long as I can before taking anything. When I get a real break from pain, it is always very difficult emotionally for me to cope with the pain when it returns. It always returns, for me at least. My doctor also said that to see any break in the pain is a good sign. It means there is some hope, even if they don't know how to help, it is not a lost cause. You are not the first person that I have heard from that has used this treatment and had complete relief for a short time. Please hang in there. I hope the pain lets up for you. It is always hard to deal with when you remember what life was like without it. I'm sorry that you are going through this, but know that you are not alone. Please check back in and let me know how you are doing, Amy Hi Lindsay,

I have been off medication for about 6 months now and I am doing pretty well. I recently passed the 5 year mark with NDPH and I can say that I am definitely better this year than I was in the first two or three. I have weeks that are bad, days that are awful, but then I have a fair amount of time that I am functional enough to work and care for my kids, so I guess I’m doing better than is typically expected.
I get really sick of taking meds that have side effects and don’t seem to help my head very much. Sometimes it is just easier to deal with the pain for as long as I can before taking anything. When I get a real break from pain, it is always very difficult emotionally for me to cope with the pain when it returns. It always returns, for me at least.
My doctor also said that to see any break in the pain is a good sign. It means there is some hope, even if they don’t know how to help, it is not a lost cause. You are not the first person that I have heard from that has used this treatment and had complete relief for a short time.
Please hang in there. I hope the pain lets up for you. It is always hard to deal with when you remember what life was like without it. I’m sorry that you are going through this, but know that you are not alone.
Please check back in and let me know how you are doing,
Amy

]]> By: Lindsay http://lifewithndph.com/tell-your-story/#comment-361 Lindsay Wed, 23 Jun 2010 19:58:22 +0000 http://ndph.wordpress.com/?page_id=27#comment-361 I recently went into the hospital for the DHE therapy with the Montefiore Hospital Department of Headaches in NYC, I was admitted on Mother's Day and released the following Thursday. My headache did break my final day there and it felt like a taste of freedom, and thats exactly what it was a small taste. I got home and ended up with an arsenal of medications and had to come down off the IV's - not any easy task, it took me about 3 full days to get back to my normal self, and best of all - not literally, my headaches came back with vengeance. My Dr. said its a good thing because I can realize my triggers and see what things set of my headaches. They changed my meds here and there and told me I am on medication management from here on out until a new possible solution opens up. I tried Biofeedback before and after the hospital stay as well - neither time it worked. I am starting Allergy testing tomorrow just because you can never be too sure of what causing what. In more recent weeks my medication have caused me to gain a great deal of weight approx 10lbs in the last 2 weeks, which is a lot to someone who weighs 120lbs to begin with. I am on other medications to manage and offset the weight gain but obviously it is not working. I am frustrated and at the end of my rope, I am ready to come down off all medications and see where my headaches lie and what levels I am at. Have people done this? What happened, how did you feel? I recently went into the hospital for the DHE therapy with the Montefiore Hospital Department of Headaches in NYC, I was admitted on Mother’s Day and released the following Thursday. My headache did break my final day there and it felt like a taste of freedom, and thats exactly what it was a small taste. I got home and ended up with an arsenal of medications and had to come down off the IV’s – not any easy task, it took me about 3 full days to get back to my normal self, and best of all – not literally, my headaches came back with vengeance. My Dr. said its a good thing because I can realize my triggers and see what things set of my headaches. They changed my meds here and there and told me I am on medication management from here on out until a new possible solution opens up. I tried Biofeedback before and after the hospital stay as well – neither time it worked. I am starting Allergy testing tomorrow just because you can never be too sure of what causing what. In more recent weeks my medication have caused me to gain a great deal of weight approx 10lbs in the last 2 weeks, which is a lot to someone who weighs 120lbs to begin with. I am on other medications to manage and offset the weight gain but obviously it is not working. I am frustrated and at the end of my rope, I am ready to come down off all medications and see where my headaches lie and what levels I am at. Have people done this? What happened, how did you feel?

]]> By: Michael http://lifewithndph.com/tell-your-story/#comment-359 Michael Sat, 19 Jun 2010 06:37:30 +0000 http://ndph.wordpress.com/?page_id=27#comment-359 Hi, I just wanted to write and say I'm still out here (in Washington, DC) with NDPH and doing ok. I too had a sphenoid sinus problem, an infection that required surgery to fix. The headache that started with it never went away though. So, I'm at 1.5 years with it. What's weird is that mine seems to have moved mostly into my nose and middle two upper teeth. My nose is just always sore. If I touch it, it feels sore. However, I'm doing pretty good all things considered. I started taking Nortrypiline (sp?) and Cymbalta that seems to have helped a good bit. I still have a bad day now and then, but overall the pain is way down. So, rambling here to say thanks for this site. It's good to know I'm not alone in this. Also, anyone reading this, know there is some hope and people do experience improvement. We may not be able to end the headache, but we can manage it. I've gotten back into traveling abroad, working out with a trainer, doing great at work, and feeling happy again. I know I have this pain in my nose, but it doesn't have me. Hi,
I just wanted to write and say I’m still out here (in Washington, DC) with NDPH and doing ok. I too had a sphenoid sinus problem, an infection that required surgery to fix. The headache that started with it never went away though. So, I’m at 1.5 years with it. What’s weird is that mine seems to have moved mostly into my nose and middle two upper teeth. My nose is just always sore. If I touch it, it feels sore.

However, I’m doing pretty good all things considered. I started taking Nortrypiline (sp?) and Cymbalta that seems to have helped a good bit. I still have a bad day now and then, but overall the pain is way down.

So, rambling here to say thanks for this site. It’s good to know I’m not alone in this. Also, anyone reading this, know there is some hope and people do experience improvement. We may not be able to end the headache, but we can manage it. I’ve gotten back into traveling abroad, working out with a trainer, doing great at work, and feeling happy again. I know I have this pain in my nose, but it doesn’t have me.

]]> By: Bethany http://lifewithndph.com/tell-your-story/#comment-347 Bethany Wed, 19 May 2010 17:36:05 +0000 http://ndph.wordpress.com/?page_id=27#comment-347 It all started back in September 2009, I got a sudden headache. I blew it off and took some pain killers. A week later, i knew something wasn't right, the pain got so unbearable i went to my local ER. The ER thought "oh, it's just a migraine." They drugged me up and sent me home. After weeks of persistent pain, i went to my family doctor. He diagnosed me with migraines but gave me a referal to Neurology which wasn't for months later. After no pain pills worked i went back for a second opinion, then it was TMJ Syndrome and got put on meds for that. Still didn't even touch the headaches. My Neurology appt was nearing, until i got the phonecall no-one wants, it was cancelled. The re-scheduled it for another 2 months ahead! I got new symptoms that disabled me, i was in the ER 3 times in less than a week hooked to various IVs and getting CT scans, Spinal Taps and all kinds of migraine meds. FINALLY, i got to be seen by a Neurologist again, who diagnosed me with NDPH, it brought tears to my eyes to finally after 9 months, finally have an answer. I start a course of new meds soon and hope to get results. It all started back in September 2009, I got a sudden headache. I blew it off and took some pain killers. A week later, i knew something wasn’t right, the pain got so unbearable i went to my local ER. The ER thought “oh, it’s just a migraine.” They drugged me up and sent me home. After weeks of persistent pain, i went to my family doctor. He diagnosed me with migraines but gave me a referal to Neurology which wasn’t for months later. After no pain pills worked i went back for a second opinion, then it was TMJ Syndrome and got put on meds for that. Still didn’t even touch the headaches. My Neurology appt was nearing, until i got the phonecall no-one wants, it was cancelled. The re-scheduled it for another 2 months ahead! I got new symptoms that disabled me, i was in the ER 3 times in less than a week hooked to various IVs and getting CT scans, Spinal Taps and all kinds of migraine meds. FINALLY, i got to be seen by a Neurologist again, who diagnosed me with NDPH, it brought tears to my eyes to finally after 9 months, finally have an answer. I start a course of new meds soon and hope to get results.

]]> By: Amy http://lifewithndph.com/tell-your-story/#comment-338 Amy Tue, 13 Apr 2010 12:26:32 +0000 http://ndph.wordpress.com/?page_id=27#comment-338 I did have an issue with the Spheniod sinuses - so please let me know if you find anything out with the MRI. It still seems kind of hazy to me. I'm sorry that you are back searching for info again. I know how you feel. I think it becomes more difficult to tolerate that pain after you have had a nice break in the pain. I know that generally, with NDPH, treatments work for a time and then they stop working and you have to try something new. So I don't think that what you are going through is strange for NDPH. I hope that Dr. Singer finds something new for you to try that works just as well. Please keep us up to date here! I have lots of readers that check in for new ideas. Going to check out your blog now... :) I did have an issue with the Spheniod sinuses – so please let me know if you find anything out with the MRI. It still seems kind of hazy to me.
I’m sorry that you are back searching for info again. I know how you feel. I think it becomes more difficult to tolerate that pain after you have had a nice break in the pain.
I know that generally, with NDPH, treatments work for a time and then they stop working and you have to try something new. So I don’t think that what you are going through is strange for NDPH.
I hope that Dr. Singer finds something new for you to try that works just as well. Please keep us up to date here! I have lots of readers that check in for new ideas.
Going to check out your blog now… :)

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