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New Daily Persistent Headache
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.
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Hello @darommom and welcome to Mayo Connect. I am sorry to hear of your son's debilitating headaches.
While I have not experienced migraines, I did some research on the American Migraine Foundation website and found this information regarding support groups, https://americanmigrainefoundation.org/understanding-migraine/why-you-need-migraine-support-network/
Perhaps some of our Members who have experienced NDPH will be able to respond to some of your other questions and concerns.
You mentioned that your son was diagnosed 3 years ago at Mayo Clinic. If you care to share more, how long prior to that did he have headaches? Is there anything that seems to trigger his symptoms?
I look forward to hearing from you.
Teresa
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1 ReactionMy wife has constant daily head pressure/headache for several months. We believe it may be NDPH, which was suggested by an ER doc - but her current neurologist (#3) believes it is instead a pinched nerve and that surgery on the cervical spine may offer some relief. An odd feature of this is that she feels tactile sensations (floating pieces of metal) in her mouth that cause her a great deal of discomfort as well. We have not heard of anyone experiencing that with NDPH, but we wonder if the pinched nerve might be causing it as well. We would welcome hearing from anyone else who may have a similar experience.
Hello @corxdv, welcome to Connect. I moved your discussion and combined it with an existing discussion on New Daily Persistent Headaches. I did this for a couple of reasons, one so that you would have the chance to read through some of the previous posts from members on this diagnosis and two, so the members already discussion this diagnosis would see your message. This discussion was started some time ago, but it has been recently active, so if you are reading from the beginning do not be thrown off by the date. If you are responding by email, I suggest clicking on VIEW & REPLY so you can see the whole discussion from the beginning and you can participate where you feel comfortable.
@corxdv, you mentioned that your neurologist thinks that surgery is a viable option. How comfortable are you and your wife with that and is the neurologist confident that will help? I only ask because surgery on the spine sounds intimidating.
I had NDPH for more than 3 years, going from one headache clinic to another. Nothing worked. When I was about to give up, I found a doctor at University of Chicago Hospital who prescribed Lyrica. After a few months, my pain level dropped down from 8 to 4. The headaches eventually went away. But, there were horrible side effects (anxiety and IBS issues). The doctor's name is Richard Kraig. I hope this information will help you. I went through hell trying one medication after another. I remember being on 8 different prescriptions at the same time. I even gave serious thought about suicide. But, I got lucky and found the right doctor with the right medicine.
I don’t know your particular headaches but having suffered from migraines most of my life and not having them for the last two years might help you too. Try a different diet -DASH and drink 64 ounces of water a day. Salt level and dehydration wet causing them. Stay away from tv, computer and phone screen. Limit stress and get at least 6 hours of sleep. I hope it helps.
@vasaiovic How is your daughter now? I see this post was several years back. We are praying daily for our teenage daughter - two years into NDPH.
Proverbs 3:5-6
Hi, @julbellas, and welcome to Mayo Clinic Connect. You mentioned your teenage daughter has new daily persistent headache (NDPH). Will you share more about what she has been experiencing?
Hi All, it's been a while since I've posted to the group. Recap for me: I have had NDPH since June 2010 and been on disability from my attorney gig since September 2010. It took them a few years to correctly diagnose me, and I have tried ALL the drugs with no positive effects (plenty of negative effects). I had a brief 3 hour period of significant relief from acupuncture in 2015, but my acupuncturist was never able to reproduce that result.
My neurologist got approval for me to try Aimovig, though apparently he got some pushback from the Kaiser powers that be. They didn't want to use this expensive medication on a NDPH patient, but given my history he was able to push it through. I just took my second dose. So far there has been no noticeable effect, and my neurologist is requiring me to document for him my daily pain severity.
I follow @NDPHReasearch on Twitter, and recently saw this tweet: "Talked to some folks recently who participated in the Aimovig and Ajovy trials for CM. In several instances, response was only noted after the 5th or 6th month." I've asked for more information in case I do need to be on it for longer than has been authorized so far. I'd definitely be interested to hear from anyone who has received some relief from the Aimovig.
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3 ReactionsWelcome back, @quazar.
Members, like @msb18 @gothope @laluzhiker are talking about erenumab (Aimovig) in this discussion:
- How do you get relief from frequent migraines https://connect.mayoclinic.org/discussion/how-do-you-get-relief-from-frequent-migraines/
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2 Reactions@quazar I am on 140mg Aimovig. I began to improve 4 days after the medication was administered. I am also experiencing side effects. I didn't experience them when I was on 70mg for 2 months but, I also had only 4 migraine-free days out of 60 days on 70mg. The 2 competitor meds - which both work on the CGRP itself rather than the receptor - are not known to have the constipation or muscle cramping produced by Aimovig. Emgality does have a problem in that Lupus patients taking a specific medication can't take Emgality because Emgality increases the toxicity of the Lupus medication. Because I have TMJ and nerve damage, the Aimovig muscle cramping can be quite debilitating. So, I'm trading migraine relief for intense nerve and TMJ pain. There is no rhyme or reason with regards to the side effects as they pertain to me; I haven't narrowed down a reason why some days I experience no cramping while other days it's mild and other days it's severe.
I had to request that Aimovig be added to my Formulary. The insurance company approved it as a Tier 4 medication. All 3 CGRP meds are priced at $6900/year out of pocket. But, I'm willing to bet that individual insurance plans won't cover all 3 OR won't cover them at the same rate. That would, effectively, make one medication more affordable to policy holders.
I think that the Aimovig side effects would be more tolerable for patients with no comorbid illnesses. Those with digestive issues, like gastroparesis, would probably have a difficult time staying on Aimovig. If I could convince my insurance company to cover Emgality, I think I'd switch next month.
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