1. < Chronic Pain

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.

dhramsey | @dhramsey | Apr 1, 2019
In reply to @cici10 "Hello. Interested to hear you've been receiving Botox injections. My husband is scheduled to do so..." + (show)
@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?

Jump to this post

They have not been effective. Insurance is also always an issue

REPLY
cici10 | @cici10 | Apr 1, 2019

Thank you dhramsey. My husband's neurologist said a trial of 3 series of shots, spaced 90 days apart. After that no further Botox if no relief.

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1 reply
russy | @russy | Apr 1, 2019
In reply to @msb18 "@quazar I am on 140mg Aimovig. I began to improve 4 days after the medication was..." + (show)
@msb18

@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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Have you tried Emgality? I haven't yet but plan to. I tried Amovig for one month and it did help reduce the frequency of the headaches but caused me severe nightmares. I received a sample of the Emgality last week but messed up with the syringes. I lost all of the medication before I could inject the needles.

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1 reply
dhramsey | @dhramsey | Apr 1, 2019
In reply to @cici10 "Thank you dhramsey. My husband's neurologist said a trial of 3 series of shots, spaced 90..." + (show)
@cici10

Thank you dhramsey. My husband's neurologist said a trial of 3 series of shots, spaced 90 days apart. After that no further Botox if no relief.

Jump to this post

yes, I am going to discontinue. I have gone through 4 cycles, your husband, as we all know could respond. Hopefully, this is the case.

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dhramsey | @dhramsey | Apr 1, 2019
In reply to @russy "Have you tried Emgality? I haven't yet but plan to. I tried Amovig for one month..." + (show)
@russy

Have you tried Emgality? I haven't yet but plan to. I tried Amovig for one month and it did help reduce the frequency of the headaches but caused me severe nightmares. I received a sample of the Emgality last week but messed up with the syringes. I lost all of the medication before I could inject the needles.

Jump to this post

I have tried Aimovig for NDPH, I had some side effects that my Emgality does not. I do get some relief from Emgality, and my energy level is much improved. I work 40-50 hours a week still.

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msb18 | @msb18 | Apr 1, 2019
In reply to @cici10 "Hello. Interested to hear you've been receiving Botox injections. My husband is scheduled to do so..." + (show)
@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?

Jump to this post

@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.

REPLY
2 replies
russy | @russy | Apr 2, 2019
In reply to @msb18 "@cici10 I received Botox for 2 years. I only stopped because the new insurance covers just..." + (show)
@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.

Jump to this post

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.

REPLY
cici10 | @cici10 | Apr 2, 2019
In reply to @msb18 "@cici10 I received Botox for 2 years. I only stopped because the new insurance covers just..." + (show)
@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.

Jump to this post

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.

REPLY
quazar | @quazar | Apr 2, 2019
In reply to @cici10 "Hello. Interested to hear you've been receiving Botox injections. My husband is scheduled to do so..." + (show)
@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?

Jump to this post

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.

REPLY
dhramsey | @dhramsey | Apr 3, 2019

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

REPLY
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