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.

@cici10

Hello. Interested to hear you've been receiving Botox injections. My husband is scheduled to do so next month. Have they been effective for you?

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@cici10 I received Botox for 2 years. I only stopped because the new insurance covers just 30% which makes Botox unaffordable. Anyway, 3 things matter about with Botox for chronic migraine – training, dosage and apparently there is a test that shows who would do best with Botox. I'd have to dig through my information to find out what it's called. The gist of it is that people with a certain amount of hormone or something (sorry, in midst of awful back to back migraines) do much better with Botox than those with lower levels in their system.

Botox must be administered to 31 locations – forehead, temples, scalp, back of neck and upper trapezius muscles. Hitting the exact points matters. Also, the amount total administered as well as the amount administered to specific locations matters a lot. I received 200 units per session. The doctor injected all 31 locations and then went back to the most painful spots for my migraines and injected more into those spots (right temple, above right eyebrow). Holy moly, did it hurt but, it hurt because I was in the midst of a migraine at each appointment and being injected into certain spots was bad. But it was worth it.

My results – two solid months with zero migraine pain days. Now, I still had other migraine symptoms like dimmed vision and slurred speech. But to have no migraine headache for 2 months after each dose felt like a miracle. My muscle movement didn't return until a bit more than 4 months after my last dose but pain relief – for me – was only 2 months. I would, in a heartbeat, restart Botox if my insurance would cover it at even Tier 4 ($100 out of pocket per session as opposed to Tier 5 of $840 out of pocket per session).

I hope this information helps.

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@msb18

@cici10 I received Botox for 2 years. I only stopped because the new insurance covers just 30% which makes Botox unaffordable. Anyway, 3 things matter about with Botox for chronic migraine – training, dosage and apparently there is a test that shows who would do best with Botox. I'd have to dig through my information to find out what it's called. The gist of it is that people with a certain amount of hormone or something (sorry, in midst of awful back to back migraines) do much better with Botox than those with lower levels in their system.

Botox must be administered to 31 locations – forehead, temples, scalp, back of neck and upper trapezius muscles. Hitting the exact points matters. Also, the amount total administered as well as the amount administered to specific locations matters a lot. I received 200 units per session. The doctor injected all 31 locations and then went back to the most painful spots for my migraines and injected more into those spots (right temple, above right eyebrow). Holy moly, did it hurt but, it hurt because I was in the midst of a migraine at each appointment and being injected into certain spots was bad. But it was worth it.

My results – two solid months with zero migraine pain days. Now, I still had other migraine symptoms like dimmed vision and slurred speech. But to have no migraine headache for 2 months after each dose felt like a miracle. My muscle movement didn't return until a bit more than 4 months after my last dose but pain relief – for me – was only 2 months. I would, in a heartbeat, restart Botox if my insurance would cover it at even Tier 4 ($100 out of pocket per session as opposed to Tier 5 of $840 out of pocket per session).

I hope this information helps.

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I received one Botox injections. It seem to help for a couple of weeks then I started having the two migraines a week. The neurologist said it may take two series of the medication for it to work. I'm going to try it again. If it doesn't work I'm going to try Emgality.

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@msb18

@cici10 I received Botox for 2 years. I only stopped because the new insurance covers just 30% which makes Botox unaffordable. Anyway, 3 things matter about with Botox for chronic migraine – training, dosage and apparently there is a test that shows who would do best with Botox. I'd have to dig through my information to find out what it's called. The gist of it is that people with a certain amount of hormone or something (sorry, in midst of awful back to back migraines) do much better with Botox than those with lower levels in their system.

Botox must be administered to 31 locations – forehead, temples, scalp, back of neck and upper trapezius muscles. Hitting the exact points matters. Also, the amount total administered as well as the amount administered to specific locations matters a lot. I received 200 units per session. The doctor injected all 31 locations and then went back to the most painful spots for my migraines and injected more into those spots (right temple, above right eyebrow). Holy moly, did it hurt but, it hurt because I was in the midst of a migraine at each appointment and being injected into certain spots was bad. But it was worth it.

My results – two solid months with zero migraine pain days. Now, I still had other migraine symptoms like dimmed vision and slurred speech. But to have no migraine headache for 2 months after each dose felt like a miracle. My muscle movement didn't return until a bit more than 4 months after my last dose but pain relief – for me – was only 2 months. I would, in a heartbeat, restart Botox if my insurance would cover it at even Tier 4 ($100 out of pocket per session as opposed to Tier 5 of $840 out of pocket per session).

I hope this information helps.

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Thank you @msb18. I have the 31-site chart & hopefully those sites are the ones the neuro plans to inject. We are cautiously hopeful – there are several published case studies on good outcomes for folks with NDPH. But as @dhramsey found, it is not always effective for everyone with this perplexing disorder. I appreciate the recent posts about Aimovig & will ask the neuro about that as well.

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@cici10

Hello. Interested to hear you've been receiving Botox injections. My husband is scheduled to do so next month. Have they been effective for you?

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Sadly, I’m one of those patients who didn’t get any relief from Botox. The first 2 times I tried it, my neurologist didn’t do the proper dosage at all the points. It had zero effect. When I got a new neurologist, he recognized the error and a proper treatment resulted in me feeling like I had a serious case of the flu. This was a completely unexpected side effect as the docs never told me about it. I felt better after a few days, but there was still no change to my NDPH pain level.

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Here is my current NDPH cocktail in Buckets : this has my pain at a 4 and I work full time

Nerve Bucket
Duloxetine 60mg 1x per day
Botox – 90 days

Blood Pressure Bucket
Carvedilol 12.5mg.2x per day
Candesartan 16 mg tablet 2x per month

Acute Headache Bucket
Rizatriptan 10 mg disintegrating tablet (10 per month)

Preventative Headache Bucket
Galcanezumab-gnlm 120 mg/mL Pnij injection (Emgality)
zonisamide 100 mg capsule 1x per day

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@dhramsey

Here is my current NDPH cocktail in Buckets : this has my pain at a 4 and I work full time

Nerve Bucket
Duloxetine 60mg 1x per day
Botox – 90 days

Blood Pressure Bucket
Carvedilol 12.5mg.2x per day
Candesartan 16 mg tablet 2x per month

Acute Headache Bucket
Rizatriptan 10 mg disintegrating tablet (10 per month)

Preventative Headache Bucket
Galcanezumab-gnlm 120 mg/mL Pnij injection (Emgality)
zonisamide 100 mg capsule 1x per day

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This is very helpful. Thank you @dhramsey for sharing. We now have a list of other medications to try.

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don't know if this will help or if I'm overstepping boundaries. I was a Psych nurse all my working life and worked nights with a nurse who's husband was classed as disabled due to headaches constantly and I mean non stop. After many yrs and I mean about 20yrs of back of forth to Dr's appointments and different hospitals in different parts of the UK he has been fitted with an appliance of sorts in his brain. First he was found to have too much blood or too thick blood ( not sure what that was or what it's called) so he would have blood drained at times. Now he is just waiting till the swelling goes down as he only just got the surgery.he will then have it switched on and the computer will collaborate what impulses he needs.Might be worth doing your own research.

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@anniebrook

don't know if this will help or if I'm overstepping boundaries. I was a Psych nurse all my working life and worked nights with a nurse who's husband was classed as disabled due to headaches constantly and I mean non stop. After many yrs and I mean about 20yrs of back of forth to Dr's appointments and different hospitals in different parts of the UK he has been fitted with an appliance of sorts in his brain. First he was found to have too much blood or too thick blood ( not sure what that was or what it's called) so he would have blood drained at times. Now he is just waiting till the swelling goes down as he only just got the surgery.he will then have it switched on and the computer will collaborate what impulses he needs.Might be worth doing your own research.

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do you happen to know the name of the device ? I am assuming this was done in the UK ? NIH

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Hello I was diagnosed with NDPH two months ago, I remember the day that my headache began accompanied by photophobia dizziness and blurred vision, I have taken tegretol, sumatriptan fluonarizine, tizanidine, luvox, sertraline, clonazepan. Nothing has helped me, just going on a trip and the days after returning from the trip, the pain returned for a month. Already two neurologists have diagnosed me, the last one prescribed me pregabaline 75mg, magnesium and calcium.

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@vasaiovic

Our daughter is completely disabled now with NDPH. She has been suffering for 2 1/2 years – level 7-10 24/7 with no let up. She was hospitalized in March and received 2 rounds of DHE and she has been extremely nauseous since. She has lost a dangerous amount of weight, has tried literally everything like you. She takes an inter-muscle injection of Benadryl when she has been at a 10 for more than 8 hours (it knocks her out, but she moans while she sleeps). She is on Marinol for the nausea, which only takes off the edge, and is now trying methadone for pain. So far nothing, but maybe after she gets up to the dose they are wanting to try? We are people of faith and are trusting God for answers and for strength daily until we do. Will pray for you all as well.

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How is your daughter today?

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@julbellas

How is your daughter today?

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My daughter is the strongest member in our little family. 

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@veteranspouseinpain

My daughter is the strongest member in our little family. 

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I’m 100% sure she is!
My daughter is 16 and just hit three years with NDPH. She’s my daily inspiration.

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@julbellas

I’m 100% sure she is!
My daughter is 16 and just hit three years with NDPH. She’s my daily inspiration.

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That so nice to hear. usually around that age daughter's don't want to be around their parents no more. But my daughter does then god. I'm not asking for your actual address but what state do you live in

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I don't know anything about headaches but I do know pain meds. Narcotics need not be addictive if used properly. If you don't get high you should not get addicted. I use them and am not addicted. 20 some years. I have an interthecral pain pump. I get 3.5 mgs. Of Dilaudid per 24 hours. Meds delivered this way are up to 300 more times affective. I get my pump refilled every 12 weeks. I still have pain but It's very bearable. Large oral doses, 260 mgs. per day were no longer affective for my pain. It's are getting easier to find Docs who do them. Check it out.

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@dhramsey

Here is my current NDPH cocktail in Buckets : this has my pain at a 4 and I work full time

Nerve Bucket
Duloxetine 60mg 1x per day
Botox – 90 days

Blood Pressure Bucket
Carvedilol 12.5mg.2x per day
Candesartan 16 mg tablet 2x per month

Acute Headache Bucket
Rizatriptan 10 mg disintegrating tablet (10 per month)

Preventative Headache Bucket
Galcanezumab-gnlm 120 mg/mL Pnij injection (Emgality)
zonisamide 100 mg capsule 1x per day

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Wow, that’s quite the line up of meds. Interesting enough, I’ve arrived at something similar but less complete.
I was prescribed venlafaxine instead of cymbalta. I had to quit it pretty quickly because it caused extreme insomnia. Do you feel like the cymbalta is an important factor? It’s pretty similar to venlafaxine, so I was debating trying it and risking the same side effects. But if it is really providing you with significant relief, it may be worth revisiting.
About the blood pressure bucket: what is your normal BP? And I have been afraid of trying any beta blockers because I already have symptomatic low BP. What are your thoughts on these meds in particular?
For me, rizatriptan might as well be a tic tac. It has no effect at all. I do take tizinadine and cannabis to sleep during bad spells. I usually live around a 4-5 but I get attacks that last a couple of weeks at a time that go up to 8-9.
Topiramate is my anticonvulsant of choice. 200/mg per day. I don’t have any of the side effects people usually complain about.

How did that CGRP therapy turn out for you? It’s been a year since your post.

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