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.

@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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Welcome @bostonsanfran, I’m sorry to hear of your headaches. It must be very difficult to not have any answers or helpful treatments. Since you have “ringing in your ears” have you seen an ENT doctor? That might be a good place to search for answers. In the meantime, we are glad to have you as part of Mayo Connect. Keep in touch. We look forward to getting to know you better. Teresa

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@bostonsanfran

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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Hello @bostonsanfran, welcome to Connect. We are glad you found this discussion to add your experiences to. By posting your thoughts, members who have previously posted in this discussion will get a notification and we hope to see them add their thoughts soon.

While you wait for your appointment with neurology, have you noticed any improvement with eliminating caffeine, alcohol, and gluten from your diet?

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@bostonsanfran

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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Hi @bostonsanfran Did your MRI show an arachnoid cyst? I have that as well and I struggle with the fact that it is an “incidental finding” yet I am diagnosed with NDPH. Especially since a lot of my pain often stems from the location of my cyst. Just curious what you have been told.

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@bostonsanfran

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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Hello @kstream, and welcome to Connect. While we wait for @bostonsanfran to answer your question about having an arachnoid cyst, I thought you might be interested in checking out these discussions that took place in the past regarding arachnoid cysts,

– Nowhere to turn for answers, http://mayocl.in/2mc8q7X (great posts with sources about arachnoid cysts)
– I am desperate to find a dr who treats arachnoiditis, http://mayocl.in/2lv8wYj

@kstream, have you discussed your concern that your pain seems to stem from your cyst?

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@bostonsanfran

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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Sorry for my long delay in replying. Since my original post, I have been through a series of tests and consultations. While my MRI did show a small (likely congenital) arachnoid cyst, I was told it was too small and in the wrong location to be consequential to my headaches. My neurologist has put me on increasing doses of Amitriptylene. I’m now at 50mg, and it is helping with the headaches. Rather than every day, I’m probably getting the headaches 4 times per week. On the days I don’t get the full headache, I will literally feel the headaches on the verge of breaking through – but they remain suppressed as a shadow of a headache – is this makes sense. The doctor also provided Fioricet as an emergency pill for emerging really bad headaches. This definitely works, but I use it very sparingly due to potential dependency issues that can develop.

So I am encouraged by the progress, but the side effects from the meds is unpleasant. I have also found my challenge with tinnitus has worsened over the same time period. Not sure if this might be related to the Amitriptylene, but it certainly feels like I’m playing whack-a-mole. I came back to make this post as I wanted to share some optimism regarding limited success with medication.

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@bostonsanfran

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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So sorry you’re going through this kind of headache horror. I too have been through this roller coaster since I was 30, I am now 63. It has completely changed my life and how I live it. I know exactly what you’re saying about the headache not being there, but hovering and just waiting.

I have tried all the drugs practically on the market including many of the antidepressants, anti-convulsantives, and many I don’t even know what therefore. Generally the side effects get to be too much and I stop.

I can’t say it’s a miracle,but Botox injections in your head and neck help tremendously, Fioricet/Fiorinal or either +codine used cautiously work. You didn’t mention Imitrex that was a Godsend for me. I would hardly leave the house until Imitrex came on the market. The other thing that helps a lot when it gets to the point where you feel like you can’t stop it, is ask your doctor or you can go to urgent care and get an injection of Toradol. It is not a narcotic it’s an anti-inflammatory but it helps tremendously with migraines. I also have my own TENS device, you can just get them from Amazon at this point and they give slight electricity to the area and it helps to lighten up. I use a lot of ice packs and lay on them until it numbs the area. That helps a lot.
Best of luck, that’s the bottom of my bag of tricks and I’m so sorry that you’re going through that. These headaches have really change the map of my life. Good luck, my heart really goes out to you, Jennifer

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@bostonsanfran

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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@jenapower Thank you for all the information you provided to headache sufferers. It sounds as if you have worked hard at controlling the pain and I admire your persistence! I found your phrase, “These headaches have really change the map of my life” as an excellent word-picture for everyone who suffers from chronic pain and illness. It seems like you have developed a great attitude and have tried a lot of things to find relief! Teresa

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@bostonsanfran

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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@bostonsanfran Thanks so much for the update. I’m glad to hear that you are making some progress with the headache pain. Does you doctor think that the tinnitus is related to your headaches? Have you consulted an ENT doc regarding the tinnitus? That might be helpful. Best wishes to you and thanks for letting us know how you are doing. Teresa

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@bostonsanfran

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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Thank you for your kind words, they actually make me feel better. Although I have done everything I possibly can, I also have fibromyalgia, multiple broken bones, multiple surgeries, a few messed up discs and I’m in chronic pain every day. The headaches were the first to happen, but I’ve had two bad accidents that have broken many bones and have had multiple surgeries to put me back together again. From all of that, I guess I developed fibromyalgia and I’m in constant pain. It really does change the fabric of your life, and friendships. Your social life becomes doctors, physical therapists, and chiropractors. You lose a lot of people along the way and it is very hard on all your relationships, it can make you sad. Most the time I try to have a good attitude, and I’m always looking for new solutions. Although I say that, there have been plenty of tears shed along the way. I just remember a point in my life when I was in my 30s when my friends would go to the big city shopping and I wouldn’t go for fear I would get a migraine headache that would be incapacitating and I’d have no way to go home. Imitrex actually made it possible for me to go on those excursions and it was a Blessing.

I didn’t mentioned in my first post, that I also go to physical therapy once a week to keep as much moving and stretched as possible, when I need to I also go to the chiropractor. That isn’t to say I do not use pain medicine, because I do. I think I wouldn’t function without it and you can tough it out for a while, but eventually you need to do what works for your life. Thank you for the comments. I just felt so bad for her when I read her post. I’ve been in the exact situation.
Blessings, Jennifer

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@bostonsanfran

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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@jenapower I’m continually amazed by folks like you who are able to rise above your circumstances! You display resiliency and that is a key to getting through the tough times in life. Keep sharing with us at Mayo Connect, your story provides inspiration for all of us! Teresa

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