New Daily Persistent Headache

Posted by llee @llee1, Dec 1, 2011

I was diagnosed with New Daily Persistent Headaches at Johns Hopkins headache clinic in Baltimore last August. I am hoping to find more information on these kinds of headaches. I have found very little actual research information on them, and some of the information I have found is inaccurate.

The first neuro I went to must not have been familiar with this type of headache, as I have all of the symtoms, but he never diagnosed me with NDPH. For those of you unfamiliar with this type of headache, let me tell you what I do know. First of all let me say that I got a headache the first week in June in 2010, and it has never gone away. It does not always hurt in the same place, or in the same way, or to the same extent. That makes it nearly impossible to describe to a doctor because it sounds crazy. I kept apologizing to my first neuro for not being helpful when he asked questions, and I gave him this bizaare set of answers. Finally being correctly diagnosed was huge to me. At least I knew what I had and that there were other people with this type of headache.

The headache pain goes from moderate to severe; I often have migranous headaches but migraine meds do not phase NDPH. NDHP are not migraines. It would be nice to have migraines where at least most people have some type of success with medication. I have easily tried 40 different medications. My doc at Johns Hopkins said that this is the most difficult type of headache to treat; less than half of all sufferers ever find any kind of medication that will ease the pain. For bad and really bad days I have to take oxycodone or apply a fentanyl patch. Not only are these substances highly addictive but they also cause rebound headaches which are far worse than the orginal one was. Most days (and nights) I just try to get through them. I don't really have any options.
I was an English teacher. Last year I had to take 6 months off. I went back this year, but I only made it though the first quarter. I am on short-term disability now with no option to return to my job of 29 years.

I would love to see discussion of this type of headaches on the board! I also wanted to post this in case anyone who reads this may be suffereing from this type of headache. To be classified at NDPH, the headaches must have been continual for at least a 3 month period- no time at all headache free. They say that 80% of people with these headaches can tell you the exact time they began. Have you been give a lot of different medications and none of them phased your pain? It seems like a lot of doctors don't know anything about this headache. Both my GP and my first neuro were clueless. They may need you to educate them.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@quazar

I'm 41 now, and I've had NDPH for going on 6.5 years. I was a civil litigation attorney at a small firm, and things were really beginning to gel for me at work. The one day I woke in the middle of the night with the worst headache of my life. When it didn't go away, I went to Kaiser, and my docs diagnosed me with a migraine. It didn't take long for me to realize that I couldn't work anymore. I was quickly introduced to another side effect of the NDPH, cognitive slowing. After burning through all my vacation and sick time, it was obvious that my inability to make deadlines or even understand the cases or documents I was reading precluded me being a lawyer. Thankfully, I had private disability insurance that has helped me pay the bills, and though I live alone, a supportive family to pick up the slack.

None of the drugs I've tried has helped, and while I haven't tried as many as some of you in this thread, I've certainly had my share, including botox and a course of DHE. My pain level varies between a 4 and 8 on most days with light and sound sensitivity, and I've just about worn my docs out with the "What next?" question. I feel as if I'm done with the prescription meds. The side effects were awful, and with so many of them, you have to take them for a while before you can tell if they are effective (or not in my case). I've also been to the Stanford Neuroscience Pain Clinic, where one of the doctors (Dr. Cowan) has chosen NDPH as his research field. I've been meaning to sign up for his study, even though his treatment recommendation didn't work either. Most of my doctors shrug their shoulders now, unsure what to tell me. My primary has just suggested narcotics, not as a cure, but to attempt to improve my daily quality of life, even if I'm not able to go back to work. I'm considering it, but don't feel I'm quite ready for that step, esp considering the rebound headaches!

Last year, I was referred to an acupuncturist by a friend who had been cured of her infertility, and after a month of treatment, I saw results. I've had one brief (3-hr) window where my pain level was virtually eliminated, and that was after an acupuncture treatment by this out-of-plan provider. My nausea and vertigo have also been nearly nonexistent since I've been doing acupuncture. Because of that, I'm still working with the acupuncturist, and even though I haven't had a repeat of that amazing, unbelievably blissful 3 hours, I hold out hope that if it happened one, it can happen again. I also continue to make dietary changes and have discovered a dairy intolerance (though I went to a nutritionist early in my illness and tested negative for food allergies and sensitivities). Each day, I aim to stagger the healthy activities (swimming or playing with my dog) and the necessary activities (dishes, laundry) with my time laying down reading or just being still in a dark, quiet place, with an ice pack on my head. That has helped reduce the number of days I'm in bed all day. I also just started doing biofeedback - referred out of plan by my neurologist, again for only 6 visits. If I'm remembering correctly, the mayo clinic site has a good description of biofeedback and its benefits.

I would encourage all of you to try alternative treatments like this, outside of an established health-care plan, if necessary. I say this because western medicine doesn't have an answer or cure for NDPH, and who's to say that the "one pill to fix it all" approach isn't the wrong one for this condition? Eastern medicine is all about bringing balance back to the body. I like the idea of bringing balance back into my life and that everything I do has an effect on my head. And my current treatment plan is a lot easier on my body than all those meds. Kaiser offers acupuncture, too, but they are limited in the number of treatments (6 per year per condition/referral) as well as the scope of their treatment (limited based on referral diagnosis). Obviously, you will want to do your research on providers. I've met some weirdos in my journey and was so happy to find a reputable and knowledgeable provider. Currently, we're working on a liver detox, as my digestive organ pulses seem to be tied to my pain levels. I'll let you all know if there's any progress! Good luck to all of you.

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Colleen~why is legal medical cannibis for pain such an unknown? Do you know what Mayo's opinion of this is?<br><br>

REPLY
@quazar

I'm 41 now, and I've had NDPH for going on 6.5 years. I was a civil litigation attorney at a small firm, and things were really beginning to gel for me at work. The one day I woke in the middle of the night with the worst headache of my life. When it didn't go away, I went to Kaiser, and my docs diagnosed me with a migraine. It didn't take long for me to realize that I couldn't work anymore. I was quickly introduced to another side effect of the NDPH, cognitive slowing. After burning through all my vacation and sick time, it was obvious that my inability to make deadlines or even understand the cases or documents I was reading precluded me being a lawyer. Thankfully, I had private disability insurance that has helped me pay the bills, and though I live alone, a supportive family to pick up the slack.

None of the drugs I've tried has helped, and while I haven't tried as many as some of you in this thread, I've certainly had my share, including botox and a course of DHE. My pain level varies between a 4 and 8 on most days with light and sound sensitivity, and I've just about worn my docs out with the "What next?" question. I feel as if I'm done with the prescription meds. The side effects were awful, and with so many of them, you have to take them for a while before you can tell if they are effective (or not in my case). I've also been to the Stanford Neuroscience Pain Clinic, where one of the doctors (Dr. Cowan) has chosen NDPH as his research field. I've been meaning to sign up for his study, even though his treatment recommendation didn't work either. Most of my doctors shrug their shoulders now, unsure what to tell me. My primary has just suggested narcotics, not as a cure, but to attempt to improve my daily quality of life, even if I'm not able to go back to work. I'm considering it, but don't feel I'm quite ready for that step, esp considering the rebound headaches!

Last year, I was referred to an acupuncturist by a friend who had been cured of her infertility, and after a month of treatment, I saw results. I've had one brief (3-hr) window where my pain level was virtually eliminated, and that was after an acupuncture treatment by this out-of-plan provider. My nausea and vertigo have also been nearly nonexistent since I've been doing acupuncture. Because of that, I'm still working with the acupuncturist, and even though I haven't had a repeat of that amazing, unbelievably blissful 3 hours, I hold out hope that if it happened one, it can happen again. I also continue to make dietary changes and have discovered a dairy intolerance (though I went to a nutritionist early in my illness and tested negative for food allergies and sensitivities). Each day, I aim to stagger the healthy activities (swimming or playing with my dog) and the necessary activities (dishes, laundry) with my time laying down reading or just being still in a dark, quiet place, with an ice pack on my head. That has helped reduce the number of days I'm in bed all day. I also just started doing biofeedback - referred out of plan by my neurologist, again for only 6 visits. If I'm remembering correctly, the mayo clinic site has a good description of biofeedback and its benefits.

I would encourage all of you to try alternative treatments like this, outside of an established health-care plan, if necessary. I say this because western medicine doesn't have an answer or cure for NDPH, and who's to say that the "one pill to fix it all" approach isn't the wrong one for this condition? Eastern medicine is all about bringing balance back to the body. I like the idea of bringing balance back into my life and that everything I do has an effect on my head. And my current treatment plan is a lot easier on my body than all those meds. Kaiser offers acupuncture, too, but they are limited in the number of treatments (6 per year per condition/referral) as well as the scope of their treatment (limited based on referral diagnosis). Obviously, you will want to do your research on providers. I've met some weirdos in my journey and was so happy to find a reputable and knowledgeable provider. Currently, we're working on a liver detox, as my digestive organ pulses seem to be tied to my pain levels. I'll let you all know if there's any progress! Good luck to all of you.

Jump to this post

Nancy, here are some articles from Mayo Clinic on the use of medical marijuana.

Medical marijuana See these webpages that answer the following questions http://mayocl.in/2c3X2cz & http://mayocl.in/2dnZWer
- When is medical marijuana appropriate?
- Is medical marijuana safe?
- Is medical marijuana legal?
- What you can expect
- Certification and use at Mayo Clinic

Marijuana (Cannabis sativa) http://mayocl.in/1vnfie8
- Information about its use, safety, dosing, interactions and references

From Minnesota local news outlet Post Bulletin
- Mayo Clinic, OMC let docs decide about medical marijuana http://bit.ly/2dNHFpZ

Mayo Clinic spokesman Karl Oestreich said in a statement the clinic has developed a policy for its health-care providers.
"Participation in the Minnesota Medical Cannabis program is voluntary for health-care providers. Mayo Clinic has developed a policy and associated procedures to guide providers who choose to participate in the program," Oestreich said.

REPLY
@quazar

I'm 41 now, and I've had NDPH for going on 6.5 years. I was a civil litigation attorney at a small firm, and things were really beginning to gel for me at work. The one day I woke in the middle of the night with the worst headache of my life. When it didn't go away, I went to Kaiser, and my docs diagnosed me with a migraine. It didn't take long for me to realize that I couldn't work anymore. I was quickly introduced to another side effect of the NDPH, cognitive slowing. After burning through all my vacation and sick time, it was obvious that my inability to make deadlines or even understand the cases or documents I was reading precluded me being a lawyer. Thankfully, I had private disability insurance that has helped me pay the bills, and though I live alone, a supportive family to pick up the slack.

None of the drugs I've tried has helped, and while I haven't tried as many as some of you in this thread, I've certainly had my share, including botox and a course of DHE. My pain level varies between a 4 and 8 on most days with light and sound sensitivity, and I've just about worn my docs out with the "What next?" question. I feel as if I'm done with the prescription meds. The side effects were awful, and with so many of them, you have to take them for a while before you can tell if they are effective (or not in my case). I've also been to the Stanford Neuroscience Pain Clinic, where one of the doctors (Dr. Cowan) has chosen NDPH as his research field. I've been meaning to sign up for his study, even though his treatment recommendation didn't work either. Most of my doctors shrug their shoulders now, unsure what to tell me. My primary has just suggested narcotics, not as a cure, but to attempt to improve my daily quality of life, even if I'm not able to go back to work. I'm considering it, but don't feel I'm quite ready for that step, esp considering the rebound headaches!

Last year, I was referred to an acupuncturist by a friend who had been cured of her infertility, and after a month of treatment, I saw results. I've had one brief (3-hr) window where my pain level was virtually eliminated, and that was after an acupuncture treatment by this out-of-plan provider. My nausea and vertigo have also been nearly nonexistent since I've been doing acupuncture. Because of that, I'm still working with the acupuncturist, and even though I haven't had a repeat of that amazing, unbelievably blissful 3 hours, I hold out hope that if it happened one, it can happen again. I also continue to make dietary changes and have discovered a dairy intolerance (though I went to a nutritionist early in my illness and tested negative for food allergies and sensitivities). Each day, I aim to stagger the healthy activities (swimming or playing with my dog) and the necessary activities (dishes, laundry) with my time laying down reading or just being still in a dark, quiet place, with an ice pack on my head. That has helped reduce the number of days I'm in bed all day. I also just started doing biofeedback - referred out of plan by my neurologist, again for only 6 visits. If I'm remembering correctly, the mayo clinic site has a good description of biofeedback and its benefits.

I would encourage all of you to try alternative treatments like this, outside of an established health-care plan, if necessary. I say this because western medicine doesn't have an answer or cure for NDPH, and who's to say that the "one pill to fix it all" approach isn't the wrong one for this condition? Eastern medicine is all about bringing balance back to the body. I like the idea of bringing balance back into my life and that everything I do has an effect on my head. And my current treatment plan is a lot easier on my body than all those meds. Kaiser offers acupuncture, too, but they are limited in the number of treatments (6 per year per condition/referral) as well as the scope of their treatment (limited based on referral diagnosis). Obviously, you will want to do your research on providers. I've met some weirdos in my journey and was so happy to find a reputable and knowledgeable provider. Currently, we're working on a liver detox, as my digestive organ pulses seem to be tied to my pain levels. I'll let you all know if there's any progress! Good luck to all of you.

Jump to this post

Thank you Colleen Young. Also I have a friend whose 14 yr old grand daughter is struggling with Von Willerbrand disease. Do you have a group to join on this and if so how do I get the info to her grandmother and mother as requested?<br><br>

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@quazar

I'm 41 now, and I've had NDPH for going on 6.5 years. I was a civil litigation attorney at a small firm, and things were really beginning to gel for me at work. The one day I woke in the middle of the night with the worst headache of my life. When it didn't go away, I went to Kaiser, and my docs diagnosed me with a migraine. It didn't take long for me to realize that I couldn't work anymore. I was quickly introduced to another side effect of the NDPH, cognitive slowing. After burning through all my vacation and sick time, it was obvious that my inability to make deadlines or even understand the cases or documents I was reading precluded me being a lawyer. Thankfully, I had private disability insurance that has helped me pay the bills, and though I live alone, a supportive family to pick up the slack.

None of the drugs I've tried has helped, and while I haven't tried as many as some of you in this thread, I've certainly had my share, including botox and a course of DHE. My pain level varies between a 4 and 8 on most days with light and sound sensitivity, and I've just about worn my docs out with the "What next?" question. I feel as if I'm done with the prescription meds. The side effects were awful, and with so many of them, you have to take them for a while before you can tell if they are effective (or not in my case). I've also been to the Stanford Neuroscience Pain Clinic, where one of the doctors (Dr. Cowan) has chosen NDPH as his research field. I've been meaning to sign up for his study, even though his treatment recommendation didn't work either. Most of my doctors shrug their shoulders now, unsure what to tell me. My primary has just suggested narcotics, not as a cure, but to attempt to improve my daily quality of life, even if I'm not able to go back to work. I'm considering it, but don't feel I'm quite ready for that step, esp considering the rebound headaches!

Last year, I was referred to an acupuncturist by a friend who had been cured of her infertility, and after a month of treatment, I saw results. I've had one brief (3-hr) window where my pain level was virtually eliminated, and that was after an acupuncture treatment by this out-of-plan provider. My nausea and vertigo have also been nearly nonexistent since I've been doing acupuncture. Because of that, I'm still working with the acupuncturist, and even though I haven't had a repeat of that amazing, unbelievably blissful 3 hours, I hold out hope that if it happened one, it can happen again. I also continue to make dietary changes and have discovered a dairy intolerance (though I went to a nutritionist early in my illness and tested negative for food allergies and sensitivities). Each day, I aim to stagger the healthy activities (swimming or playing with my dog) and the necessary activities (dishes, laundry) with my time laying down reading or just being still in a dark, quiet place, with an ice pack on my head. That has helped reduce the number of days I'm in bed all day. I also just started doing biofeedback - referred out of plan by my neurologist, again for only 6 visits. If I'm remembering correctly, the mayo clinic site has a good description of biofeedback and its benefits.

I would encourage all of you to try alternative treatments like this, outside of an established health-care plan, if necessary. I say this because western medicine doesn't have an answer or cure for NDPH, and who's to say that the "one pill to fix it all" approach isn't the wrong one for this condition? Eastern medicine is all about bringing balance back to the body. I like the idea of bringing balance back into my life and that everything I do has an effect on my head. And my current treatment plan is a lot easier on my body than all those meds. Kaiser offers acupuncture, too, but they are limited in the number of treatments (6 per year per condition/referral) as well as the scope of their treatment (limited based on referral diagnosis). Obviously, you will want to do your research on providers. I've met some weirdos in my journey and was so happy to find a reputable and knowledgeable provider. Currently, we're working on a liver detox, as my digestive organ pulses seem to be tied to my pain levels. I'll let you all know if there's any progress! Good luck to all of you.

Jump to this post

Well, Colleen, to be honest, I've tried several "snake oil" cures. At first, the doctors diagnosed my headache as chronic migraines and when the prescription drugs they gave me didn't work, every friend, neighbor, acquaintance and cousin of an aunt of an acquaintance was suggesting something new. I made sure that any supplements I purchased had a money back guarantee, and I used that guarantee several times to get refunds for stuff that didn't work. Those were the early years, and I learned a lot. Now I'm a lot more cautious. It usually takes a couple visits to form an opinion about a new provider, so there's always a risk that you'll spend some money before you realize the person is not reputable.

I've seen several alternative healthcare providers, and here are some suggestions re: vetting new providers. Though a lot of it seems like common sense, it can be easy to forget simple things when you're in pain or desperate to find relief for a loved one. My mom still calls me with suggestions from daytime tv! My numbers help delineate thoughts, and are not necessarily indicative of importance.

1) First and foremost, check the state licensing board to find out more about the person before the initial visit, whether they are actually licensed or if they've had any disciplinary action. Where I live, acupuncturists and other therapists are required to be licensed.

2) I also check Yelp for any reviews. You'd be surprised at how many licensed professionals are reviewed on Yelp. You can always Google the person, too, and that might reveal comments on people's blogs or other review sites.

3) The next thing you might consider is the location of their business - is it in someone's home or an actual office space and how long have they been there. If they just moved in, you might look for previous addresses or business names. 3) It's also important to note how the person likes to be paid, just so you can be prepared, but it can also be informative. Cash only might be a red flag.

4) Aside from all this, ask for credentials - where the person went to school, how long have they studied and where. My current acupuncturist studied under a woman who not only learned medicine in China but has also been to med school and is a licensed physician in the US. There was a certain measure of comfort knowing that my acupuncturist was taught by someone who had both perspectives on health care.

5) In the meeting, I pay attention to what kind of information the provider asks about. If they just want to jump right into a treatment without asking a lot of questions, to me that says the treatment isn't really tailored to my problem and therefore unlikely to be effective. Why would I pay money for that? I'm seeking a professional opinion on my treatment, and so I expect a treatment that is carefully considered.

6) I also appreciate it when providers spend some time educating me on the treatment and its potential effects. Obviously, I'm wary of side effects given the horrible time I've had with prescription meds. This wariness has seeped into my view of alternative treatments, too. So, I always consider the downside to trying new things. If i'm just going to be out money, then that's an easier risk to assess than if the treatment is going to make me feel worse. if the treatment is going to make me feel worse, will it be a long time or brief? Will I be confined to the house with a horrible GI reaction? I look for knowledge in my providers -whether they really know what they're talking about and whether they're going to share it with me. I've seen three acupuncturists, and the difference between the first and the last is like night and day. The first explained nothing, taught me nothing, and didn't spend much time on questions. Ultimately that one achieved nothing except taking my money. The one I'm seeing now spends a great deal of time educating me on how Chinese medicine works, what my pulses mean, how the body systems work, and what I can do in my daily routine, with my food, and with my body to improve my health.

7) The other thing that I like to get is corroboration. It isn't always easy, but it is possible with a bit of effort to check the information given to you by a provider. I've been a part of several groups within Kaiser and nothing I've learned in those classes or groups has contradicted what I've learned from my current acupuncturist. Yes, Chinese medicine is a different approach, but if your provider spends time educating you about it, then you'll find there's a logic that is easy to follow and verify.

8) With supplements and essential oils and stuff like that, it's important to verify what the ingredients are and where they're sourced. That can be challenging to do if the company selling it doesn't want to give you that info, but that reluctance is also informative. The same principles apply with vetting products as with providers. The good news is that, as I mentioned earlier, many products come with a money-back guarantee. I also feel more secure if someplace like Whole Foods carries a supplement. Though I don't rely on their corporate integrity to ensure the products actually work, I feel like there's an added layer of protection in their decision to stock an item vs. whether the item is only available online, and there's also a person at the store you can ask about the product.

I hope this helps. The biggest thing for me is the reviews - being able to get firsthand info about a person or product is one of the benefits of social media (imo). Though it's true that some of that can be faked, more often than not, you'll find helpful information that way.

REPLY
@quazar

I'm 41 now, and I've had NDPH for going on 6.5 years. I was a civil litigation attorney at a small firm, and things were really beginning to gel for me at work. The one day I woke in the middle of the night with the worst headache of my life. When it didn't go away, I went to Kaiser, and my docs diagnosed me with a migraine. It didn't take long for me to realize that I couldn't work anymore. I was quickly introduced to another side effect of the NDPH, cognitive slowing. After burning through all my vacation and sick time, it was obvious that my inability to make deadlines or even understand the cases or documents I was reading precluded me being a lawyer. Thankfully, I had private disability insurance that has helped me pay the bills, and though I live alone, a supportive family to pick up the slack.

None of the drugs I've tried has helped, and while I haven't tried as many as some of you in this thread, I've certainly had my share, including botox and a course of DHE. My pain level varies between a 4 and 8 on most days with light and sound sensitivity, and I've just about worn my docs out with the "What next?" question. I feel as if I'm done with the prescription meds. The side effects were awful, and with so many of them, you have to take them for a while before you can tell if they are effective (or not in my case). I've also been to the Stanford Neuroscience Pain Clinic, where one of the doctors (Dr. Cowan) has chosen NDPH as his research field. I've been meaning to sign up for his study, even though his treatment recommendation didn't work either. Most of my doctors shrug their shoulders now, unsure what to tell me. My primary has just suggested narcotics, not as a cure, but to attempt to improve my daily quality of life, even if I'm not able to go back to work. I'm considering it, but don't feel I'm quite ready for that step, esp considering the rebound headaches!

Last year, I was referred to an acupuncturist by a friend who had been cured of her infertility, and after a month of treatment, I saw results. I've had one brief (3-hr) window where my pain level was virtually eliminated, and that was after an acupuncture treatment by this out-of-plan provider. My nausea and vertigo have also been nearly nonexistent since I've been doing acupuncture. Because of that, I'm still working with the acupuncturist, and even though I haven't had a repeat of that amazing, unbelievably blissful 3 hours, I hold out hope that if it happened one, it can happen again. I also continue to make dietary changes and have discovered a dairy intolerance (though I went to a nutritionist early in my illness and tested negative for food allergies and sensitivities). Each day, I aim to stagger the healthy activities (swimming or playing with my dog) and the necessary activities (dishes, laundry) with my time laying down reading or just being still in a dark, quiet place, with an ice pack on my head. That has helped reduce the number of days I'm in bed all day. I also just started doing biofeedback - referred out of plan by my neurologist, again for only 6 visits. If I'm remembering correctly, the mayo clinic site has a good description of biofeedback and its benefits.

I would encourage all of you to try alternative treatments like this, outside of an established health-care plan, if necessary. I say this because western medicine doesn't have an answer or cure for NDPH, and who's to say that the "one pill to fix it all" approach isn't the wrong one for this condition? Eastern medicine is all about bringing balance back to the body. I like the idea of bringing balance back into my life and that everything I do has an effect on my head. And my current treatment plan is a lot easier on my body than all those meds. Kaiser offers acupuncture, too, but they are limited in the number of treatments (6 per year per condition/referral) as well as the scope of their treatment (limited based on referral diagnosis). Obviously, you will want to do your research on providers. I've met some weirdos in my journey and was so happy to find a reputable and knowledgeable provider. Currently, we're working on a liver detox, as my digestive organ pulses seem to be tied to my pain levels. I'll let you all know if there's any progress! Good luck to all of you.

Jump to this post

Hi Nancy, The best group to ask questions and share about von Willebrand disease is in the Heart & Blood Health group. We will ensure that the mother and/or grandmother is connected with others who share similar experiences. I'll write to you more fully in a private message so that we don't derail the topic of daily persistent headaches with our tangent 🙂

REPLY
@quazar

I'm 41 now, and I've had NDPH for going on 6.5 years. I was a civil litigation attorney at a small firm, and things were really beginning to gel for me at work. The one day I woke in the middle of the night with the worst headache of my life. When it didn't go away, I went to Kaiser, and my docs diagnosed me with a migraine. It didn't take long for me to realize that I couldn't work anymore. I was quickly introduced to another side effect of the NDPH, cognitive slowing. After burning through all my vacation and sick time, it was obvious that my inability to make deadlines or even understand the cases or documents I was reading precluded me being a lawyer. Thankfully, I had private disability insurance that has helped me pay the bills, and though I live alone, a supportive family to pick up the slack.

None of the drugs I've tried has helped, and while I haven't tried as many as some of you in this thread, I've certainly had my share, including botox and a course of DHE. My pain level varies between a 4 and 8 on most days with light and sound sensitivity, and I've just about worn my docs out with the "What next?" question. I feel as if I'm done with the prescription meds. The side effects were awful, and with so many of them, you have to take them for a while before you can tell if they are effective (or not in my case). I've also been to the Stanford Neuroscience Pain Clinic, where one of the doctors (Dr. Cowan) has chosen NDPH as his research field. I've been meaning to sign up for his study, even though his treatment recommendation didn't work either. Most of my doctors shrug their shoulders now, unsure what to tell me. My primary has just suggested narcotics, not as a cure, but to attempt to improve my daily quality of life, even if I'm not able to go back to work. I'm considering it, but don't feel I'm quite ready for that step, esp considering the rebound headaches!

Last year, I was referred to an acupuncturist by a friend who had been cured of her infertility, and after a month of treatment, I saw results. I've had one brief (3-hr) window where my pain level was virtually eliminated, and that was after an acupuncture treatment by this out-of-plan provider. My nausea and vertigo have also been nearly nonexistent since I've been doing acupuncture. Because of that, I'm still working with the acupuncturist, and even though I haven't had a repeat of that amazing, unbelievably blissful 3 hours, I hold out hope that if it happened one, it can happen again. I also continue to make dietary changes and have discovered a dairy intolerance (though I went to a nutritionist early in my illness and tested negative for food allergies and sensitivities). Each day, I aim to stagger the healthy activities (swimming or playing with my dog) and the necessary activities (dishes, laundry) with my time laying down reading or just being still in a dark, quiet place, with an ice pack on my head. That has helped reduce the number of days I'm in bed all day. I also just started doing biofeedback - referred out of plan by my neurologist, again for only 6 visits. If I'm remembering correctly, the mayo clinic site has a good description of biofeedback and its benefits.

I would encourage all of you to try alternative treatments like this, outside of an established health-care plan, if necessary. I say this because western medicine doesn't have an answer or cure for NDPH, and who's to say that the "one pill to fix it all" approach isn't the wrong one for this condition? Eastern medicine is all about bringing balance back to the body. I like the idea of bringing balance back into my life and that everything I do has an effect on my head. And my current treatment plan is a lot easier on my body than all those meds. Kaiser offers acupuncture, too, but they are limited in the number of treatments (6 per year per condition/referral) as well as the scope of their treatment (limited based on referral diagnosis). Obviously, you will want to do your research on providers. I've met some weirdos in my journey and was so happy to find a reputable and knowledgeable provider. Currently, we're working on a liver detox, as my digestive organ pulses seem to be tied to my pain levels. I'll let you all know if there's any progress! Good luck to all of you.

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@quazar what a terrifically comprehensive answer of your diligence. Thank you. In fact, @predictable took note of your response and recommended that it be used to start a new discussion to garner conversation specific to this topic. I might suggest cutting and pasting it to the Just Want to Talk group https://connect.mayoclinic.org/group/other/

@predictable would you like to suggest a title?

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@quazar

I'm 41 now, and I've had NDPH for going on 6.5 years. I was a civil litigation attorney at a small firm, and things were really beginning to gel for me at work. The one day I woke in the middle of the night with the worst headache of my life. When it didn't go away, I went to Kaiser, and my docs diagnosed me with a migraine. It didn't take long for me to realize that I couldn't work anymore. I was quickly introduced to another side effect of the NDPH, cognitive slowing. After burning through all my vacation and sick time, it was obvious that my inability to make deadlines or even understand the cases or documents I was reading precluded me being a lawyer. Thankfully, I had private disability insurance that has helped me pay the bills, and though I live alone, a supportive family to pick up the slack.

None of the drugs I've tried has helped, and while I haven't tried as many as some of you in this thread, I've certainly had my share, including botox and a course of DHE. My pain level varies between a 4 and 8 on most days with light and sound sensitivity, and I've just about worn my docs out with the "What next?" question. I feel as if I'm done with the prescription meds. The side effects were awful, and with so many of them, you have to take them for a while before you can tell if they are effective (or not in my case). I've also been to the Stanford Neuroscience Pain Clinic, where one of the doctors (Dr. Cowan) has chosen NDPH as his research field. I've been meaning to sign up for his study, even though his treatment recommendation didn't work either. Most of my doctors shrug their shoulders now, unsure what to tell me. My primary has just suggested narcotics, not as a cure, but to attempt to improve my daily quality of life, even if I'm not able to go back to work. I'm considering it, but don't feel I'm quite ready for that step, esp considering the rebound headaches!

Last year, I was referred to an acupuncturist by a friend who had been cured of her infertility, and after a month of treatment, I saw results. I've had one brief (3-hr) window where my pain level was virtually eliminated, and that was after an acupuncture treatment by this out-of-plan provider. My nausea and vertigo have also been nearly nonexistent since I've been doing acupuncture. Because of that, I'm still working with the acupuncturist, and even though I haven't had a repeat of that amazing, unbelievably blissful 3 hours, I hold out hope that if it happened one, it can happen again. I also continue to make dietary changes and have discovered a dairy intolerance (though I went to a nutritionist early in my illness and tested negative for food allergies and sensitivities). Each day, I aim to stagger the healthy activities (swimming or playing with my dog) and the necessary activities (dishes, laundry) with my time laying down reading or just being still in a dark, quiet place, with an ice pack on my head. That has helped reduce the number of days I'm in bed all day. I also just started doing biofeedback - referred out of plan by my neurologist, again for only 6 visits. If I'm remembering correctly, the mayo clinic site has a good description of biofeedback and its benefits.

I would encourage all of you to try alternative treatments like this, outside of an established health-care plan, if necessary. I say this because western medicine doesn't have an answer or cure for NDPH, and who's to say that the "one pill to fix it all" approach isn't the wrong one for this condition? Eastern medicine is all about bringing balance back to the body. I like the idea of bringing balance back into my life and that everything I do has an effect on my head. And my current treatment plan is a lot easier on my body than all those meds. Kaiser offers acupuncture, too, but they are limited in the number of treatments (6 per year per condition/referral) as well as the scope of their treatment (limited based on referral diagnosis). Obviously, you will want to do your research on providers. I've met some weirdos in my journey and was so happy to find a reputable and knowledgeable provider. Currently, we're working on a liver detox, as my digestive organ pulses seem to be tied to my pain levels. I'll let you all know if there's any progress! Good luck to all of you.

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@colleenyoung, @quazar, I'll try to come up with suggestions for a title. That might result in a suggestion for a whole new discussion group, because the information and Quazar's proposition seems profoundly important. Please go ahead with your current presentation plans while I take care of some personal problems at home.
Martin

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I'm new. How do I get connected to the new daily persistent headache/dizziness group!

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@teresax5

I'm new. How do I get connected to the new daily persistent headache/dizziness group!

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Hello @teresax5, welcome to Connect! Actually, by typing the message you just typed you have subscribed to the group. By doing so, you should receive email alerts any time a member posts in this discussion. If you are looking at this message via email, I suggest scrolling to the bottom and clicking on the blue box that says VIEW & REPLY, this should take you to the full discussion on the Mayo Clinic Connect website.

You can follow any group from the homepage by clicking the "follow" button or the + symbol in the bottom right of the group picture. You will automatically follow individual discussions by doing what you did, which is posting a reply.

If you have further questions, do not hesitate to send me a personal message by clicking on my name and then clicking on the blue envelope symbol. If you do this it will be a private message between just you and I. I look forward to seeing more posts from you on Mayo Clinic Connect Teresa.

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I joined Mayo Clinic Connect just to jump on this board. I'm 50 years old. Until exactly one year ago, I almost never got headaches. Then out of the blue, I began getting painful headaches every day at the same time in the afternoon. They last for many hours - usually until I fall asleep at night. The pain is bilateral, deep in my head, and constant (not throbbing). I get them at work, on the weekends, and even during relaxing vacations. The only thing that varies is the intensity. More recently, tinnitus (ringing in the ears) sometimes accompanies the headaches. The tinnitus seems to be aggravated by NSAIDs like ibuprofen. Recently had a brain MRI that showed a brain cyst that was supposedly "normal." Don't see a neurologist until next month. I've tried eliminating caffeine, alcohol and even went gluten-free for several months just to try and isolate a trigger. I'm athletic and fit - so not much more I can do on that front.

I was amazed at how NPDH symptoms exactly match my own. While comforted to not be alone, I'm also discouraged to hear how unsuccessful treatments seem to be. I fear this is my new normal. I'll post back next month after I meet with my neurologist. Any advice is appreciated.

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