Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Chronic Pain Support Group.
Connect
The big money is not behind this. My aunt had it for years. I've done the Eppley maneuver, but I understand the Foster Somersault is better. The idea is that there are crystals in your ears--https://www.youtube.com/watch?v=p1NVrGkBTjs
Both can work for BPPV, which is where the crystals are displaced. But not for other issues. Also when vertigo is severe, make sure someone is available to help you get up from the floor after the Foster maneuver. Speaking from experience here!
Sue
-
Like -
Helpful -
Hug
1 ReactionPT says its not Vertigo; it's POTS, which deals with my low blood pressure. I fell and now have my first shiner. One more thing to deal with besides the headache.
Hi, we are just meeting now and I just wanted to say hello and let you know I can sympathize with you having dizziness.
I cannot offer any information but can encourage you to keep asking for definitive answer to your questions.
The many people we see for our medical care have a wide exposure to many patients and their varied symptoms.
It could be one of them can help you get the diagnosis.
Keep asking, reading and participating with this valuable forum.
All the best to you, jill
-
Like -
Helpful -
Hug
2 ReactionsTx Jill
Have you found anything to be helpful or are you still dealing with the headache? I was recently diagnosed with New Daily Persistent Headache. (Not sure why they don’t call it Old Daily Persistent Headache because we have it for years.) Mine started July 29, 2019
so it’s 3.5 years old. It’s becoming harder and harder to deal with having it. Thankfully, it’s usually low on the pain scale and mostly ignorable. I recently have had more days of it flaring up, though, and I feel like it will literally drive me insane. I have major depression and anxiety, as well as currently an acute flare-up of chronic back and hip pain. Some days it’s just too much for me to deal with emotionally. No one seems to fully understand the idea of a headache being nonstop for years and years without a moment of reprieve. My only reprieve is during sleep, once I get past the evening tinnitus.
-
Like -
Helpful -
Hug
1 ReactionOh, hello everyone. It looks like I have joined the correct thread for NDPH. I will try to read through from oldest to newest to gather ideas to present to my neurologist. I am currently waiting to be seen at Jefferson Headache Center in Philadelphia.
-
Like -
Helpful -
Hug
1 ReactionThis may sound overly simplistic, but have you tried increasing your magnesium intake. I sufferred from migraine and cluster migraines fir over 8 years on a near daily basis until I read about high dose magnesium healing nerve endings. It worked like a miracle for me. After 2 weeks the intensity of pain decreased and at 4 weeks I was having less headaches, finally they quit with only infrequent pain with westher changes or extreme stress.
Best wishes to you.
-
Like -
Helpful -
Hug
2 ReactionsJalo, though I have heard of it, I haven’t tried taking higher doses of magnesium. I’ll try it, though. I’m willing to try just about anything at this point. Thanks!
-
Like -
Helpful -
Hug
2 ReactionsI was diagnosed with migraine associated vertigo. It sounds very similar to many of the symptoms people on this thread suffer with. I’m so sorry for all your pain. I have some other things going on as well, but I am still undergoing testing. I’ve been unable to work for two months now. I wish you all the best in your health journeys.
Kat
-
Like -
Helpful -
Hug
1 Reaction