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Treatment for New Daily Persistent Headache

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Posted 1/14/2010 3:31 AM (GMT 0)

Chuckvstar said...
Hi, I have been suffering from what has just been diagnosed as "New Daily Persistant Headache" for over 2 years. I have tried about every drug out there for treatment without success. My neurologist is now recommending botox injections, which she says they have had quite a bit of success with. Has anyone out there tried that yet. If so what has been your experience.
Chuck

Hi Chuck

I'm in the same boat and my Neurologist has botox as the last form of treatment and says he's been using it for longer than the cosmetic industry but blames them for pushing the price up - because he would use lots more than you'd use for a simple brow lift. He says it can be very effective.

Some years ago I read an article about a plastic surgeon who was removing the muscle that controls the frown line between your eyebrows. Sounds drastic but thats appearance medicine for you. He was surprised though when lots of patients started coming back saying they liked the way they looked but they LOVED the lack of migraines... yet that wasn't why they had the surgery.

So it appears there's something behind the seemingly external facial muscles and our migraines... it might be worth a shot!
Posted 1/14/2010 4:43 PM (GMT 0)

Hey Ben  Just curious did Thomas Jefferson do your ketamine iv?

                                                      givenup

Posted 1/15/2010 7:14 PM (GMT 0)

timur said...
Hi femmer,


When i went to a chiropractor for my headaches, they had told me that my hip was "imbalanced" as one leg was longer than the next which put pressure on my body and muscles. I was certain this was the cause and i scheduled myself for many appointments. After each session, i did feel a difference with a short feeling of some relief (maybe an hour or so) but it always came back to normal. As i was determined to get my body balanced (and thus get rid of my headache) i went so many times which cost a smalll fortune. To cut a long story short, it was a waste of time, money and effort (which got me more frustrated than ever). I am sure there are people out there who have benefited but this was my experience with chiropractors and is not recommended by me.....

I really wish your sons test results come back normal...



timur,

Thanks for the information. My son's tests have all come back normal to date. Unfortunately, the headaches are getting worse in severity again. He is back up to 8 out of 10 ratings with nothing touching the pain. He started massage therapy last night to try to relax him enough to sleep. He is also taking Depakote that was recently increased to 500mg that seems to be doing nothing at this point.

Thanks,
Femmer.
Posted 1/30/2010 3:34 AM (GMT 0)

I was diagnosed with new daily persistent headaches November last year. My neurologist prescribed me a 3 month treatment of a mixture of medications. Including an anti-epileptic, anti-imflammatory, an anti depressant and sandomigrane. Since the first week of treatment I have suffered from only a handful of headaches in 3 months. Before the treatment i was debilitated.

I know this treatment is very new and is being trialled in the states. It has an approx 80% success rate. Has been life-changing for me.

 

Hope this hepls some of you

Posted 1/30/2010 2:47 PM (GMT 0)
Do you know the name of the anti-epileptic? Thanks for the information. We will pass it along to our doctors as well.
Posted 1/31/2010 8:09 PM (GMT 0)
I have used ultram on a number of occasions and had great relief. I would take 100mg of untram with 600mg of Advil and it would last a LONG time (even into the next day). This worked well for me until my Dr. and I decided to try welbutrin xl. Ever since I tried that (went off it in 8 days) it seems to have ruined the effectiveness of all the medications I used to take and landed me in the ER with the worst headache of my life that would NOT let up with anything. I hope over time (as the wellbutrin works its way out) that my old and trusty medications will work again.
Posted 1/31/2010 9:01 PM (GMT 0)

Erina said...

I was diagnosed with new daily persistent headaches November last year. My neurologist prescribed me a 3 month treatment of a mixture of medications. Including an anti-epileptic, anti-imflammatory, an anti depressant and sandomigrane. Since the first week of treatment I have suffered from only a handful of headaches in 3 months. Before the treatment i was debilitated.

I know this treatment is very new and is being trialled in the states. It has an approx 80% success rate. Has been life-changing for me.

 

Hope this hepls some of you

 

 

Can you tell me the exact names of the meds and doses you take?

how old are you?

i have had these headaches as well for ten years with the last two years being constant 24/7, and severe.

i have seen several doctors, done many forms of therapy and tried several meds with nothing helping.

i have had botox twice and nerve blocks with no effects

i am about to do a five day treatment at home of ketamine iv

this is suppose to break the pain cycle

i pray this works

right now i am on oxycodone and this only takes a bit of the edge off.

 

thankyou

 

Posted 2/5/2010 6:03 PM (GMT 0)
I've had NPDH for over 2 years and have been through the same repitious cycle of drugs that have not worked.  Have you heard anything on botulinum injections?  I've been reading articles suggesting that there are potential benefits with NPDH. 

Posted 2/5/2010 6:32 PM (GMT 0)

Chripractors can help. But your hip? Why would that make you think that was the cause of Headaches? Just wondering?

Neck adjustments have been proven to help a ton with migrains, headaches, but this of course is not the case for everyone.

timur said...
Hi femmer,

When i went to a chiropractor for my headaches, they had told me that my hip was "imbalanced" as one leg was longer than the next which put pressure on my body and muscles. I was certain this was the cause and i scheduled myself for many appointments. After each session, i did feel a difference with a short feeling of some relief (maybe an hour or so) but it always came back to normal. As i was determined to get my body balanced (and thus get rid of my headache) i went so many times which cost a smalll fortune. To cut a long story short, it was a waste of time, money and effort (which got me more frustrated than ever). I am sure there are people out there who have benefited but this was my experience with chiropractors and is not recommended by me.....

I really wish your sons test results come back normal...

Posted 8/10/2010 3:09 PM (GMT 0)
Hello all,

I am a new user and I want to know if someone has a good recipe for new daily persistent headache (NDPH).

Thanks!

Karo
Posted 6/29/2011 2:30 PM (GMT 0)
Hello all. My names Kaylee. I'm a 19 year old student that's entering into my second year of college to be a neurosurgeon, I'll explain why in just a moment. Although, I have been dealing with this immense pain going on in my head for about 4 years now, going back and forth to doctors, having MRI's, cat scans, EEG's and nothing seemed to show any abnormalities in my brain. But this horrible, intense pain still seemed to reside there and I was running out of options. Finally a few weeks ago finally found a diagnosis after seeing Dr. Paul Mathew, an amazing neurologist in Jamaica Plains, Massachusetts at the Brigham Womens Headache Center. He diagnosed me with New Daily Persistent Headache and has just now started me on amitriptylin which I have researched and learned is one of the best treatments known to date for NDPH, I've only just started and am now taking 20mg a night before bed to try and stop the headaches, but still things are getting worse because the dosage I believe hasn't been increased enough to the correct dosage yet to treat therefore my headaches continue to get worse and I feel miserable, along with terrible headaches and just not feeling myself. I'm desperate to finally get my life back on track and to be able to wake up in the morning and see there is no headache, but in the mean time does anyone have any advice as to what I can do to help with feeling so horrible and moody? Or even some personal experiences with other treatments that have been most effective? Any thing would be greatly appreciated as of right now. Thanks so much.

Kaylee
Posted 6/29/2011 4:09 PM (GMT 0)
Hi Kaylee,

I'm sorry you're in so much pain. NDPH is certainly a tough one. It's a relatively new diagnosis in the headache world and so treatment protocols are still being worked out. Different things work for different people but, I've heard some have had success with a combination of topamax and seroquel. For temporary pain relief NDPH usually responds particularly well to an IV infusion of lidocaine. You may want to check out

http://www.mdjunction.com/forums/ndph-support-forums

, a NDPH specific forum. I'm sure their members will be able to answer all of your questions.
Posted 8/22/2011 4:35 PM (GMT 0)
hey ben this is ashley, we spoke yrs ago because we both went to thomas jefferson and were hospitalized. sorry to hear you still have the headaches, so do I . Done everything just like you and still on pain meds.  I just had to have tmj surgery this april. about a year recovery but my jaws feel great. Headaches still 24/7  I was about to go for the surgery I told you about. The nerve decompression surgery for ndph. That was in Houston. Dr Blake was the neuro I saw about 2 yrs ago and Dr Perry does the surgery. It has been on the news alot about how people have exhausted everything and this is something worth trying. They have been following patients for about 5 yrs now with a good outcome. After I am able to have another surgery after my surgeon that did my jaw surgery says its ok I am going to have the nerve decompression surgery. I just do not want to live my life like this anymore. There is also a Dr Ducic in Washington D.C. at Georgetown University that does this and you can listen to him lecture on the web cite. But I prefer Dr Blake as my neuro she is wonderful and I really liked Dr Perry who does the surgery better when I had the consultation with him. He is a plastic surgeon but also is a peripheral nerve surgeon and has studied under so many other doctors and has combined all that he has learned has come up with better ways of doing it.  You should check into it just to read about it. There is a forum called md junction which is a very good support group for ndph. I joined the group for occipital neuralgia and ndph. Hope to hear from you ben   Ashley
Posted 12/8/2011 8:44 PM (GMT 0)
Hi, my dad has had headaches for the past 3 years every day and he was diagnosed with NDPH about a year ago.  He has tried all sorts of medication and is currently taking morphine 3 times a day.  He goes to a headache clinic and they mentioned something about an IV treatment and I think it is probably the IV lidocaine you guys have been talking about.  However, his doctor told him that this is normally only used when NDPH is caught early and so it wouldn't be helpful to him.  But it seems like people who have had this disease for a long time have tried this treatment.  Has it worked for anyone who has been dealing with this for a long time? Any advice would helpful! My dad has depression also and it would be nice to at least have my pain-free dad back.
Posted 4/21/2012 6:51 AM (GMT 0)
I have had migraines since I was 7 it's hereditary in my family. The last 8 years tho I have woke up everyday with a headache and I went to so many doctors and have been on so many medications it's unreal. 8 months ago I went to a new doctor and she wanted to try nerve blocks on me so I did and all I got from that was violentaly ill then I did Botox, it didn't help but my forehead looked great. She did tell me that it was possible that I had this ndph and that she doesn't really know how to treat it because it hasn't been studied enough. I'm so tired of hurting, it affects my life and my child's life I can't be the mother I want to be. It's gotten to the point where painkillers aren't even helping anymore. I don't know what to do I just want the pain to go away. If anyone has any advice I would gladly take it!
Posted 4/26/2012 12:14 AM (GMT 0)
i just wanted to say that i have had daily chronic headaches and migraines for over 25 years and no specialist or doctor is prepared to give me anything stronger than panadeine forte for my headaches which does nothing.i have seen 4 neurologist,physio for one year straight,osteopath,natrapath,pain specialist,accupunture,remedial massage,normal massage,meditation,mri's,cat scans and a whole bunch of other things to try and stop these horrible headaches.i also have tried magnectic bedding as well.nothing has worked.i have got to the point that modern medicine has failed me and i have finally accepted that i will have to live with these daily headaches for the rest of my life.that does not mean that other people can't find some sort of cure for their headaches.don't give up till you have tried everything.i also suffer bad facial sinus pain which blows my headaches every day.i don't want to see other people go through what i have been through all these years.i hope in the near future that somewhere,somehow,doctors will find a cure for chronic headaches and migraines.good luck to everyone on this forum and take care. tongue
Posted 4/26/2012 3:30 AM (GMT 0)

autunm said...
i just wanted to say that i have had daily chronic headaches and migraines for over 25 years and no specialist or doctor is prepared to give me anything stronger than panadeine forte for my headaches which does nothing.i have seen 4 neurologist,physio for one year straight,osteopath,natrapath,pain specialist,accupunture,remedial massage,normal massage,meditation,mri's,cat scans and a whole bunch of other things to try and stop these horrible headaches.i also have tried magnectic bedding as well.nothing has worked.i have got to the point that modern medicine has failed me and i have finally accepted that i will have to live with these daily headaches for the rest of my life.that does not mean that other people can't find some sort of cure for their headaches.don't give up till you have tried everything.i also suffer bad facial sinus pain which blows my headaches every day.i don't want to see other people go through what i have been through all these years.i hope in the near future that somewhere,somehow,doctors will find a cure for chronic headaches and migraines.good luck to everyone on this forum and take care. tongue

. Autumn I hv the sinus problems to and I hv come to face reality myself. We just hv to keep going with the flow and pray one day we will wake up pain free!!! Sincerely Lauren
Posted 5/17/2012 9:20 PM (GMT 0)
Hi Femmer,
My daughter when she was about 8 suffered from daily headaches with no apparent cause, we tried every test, it came down to her teeth, her bite was off, when the doctor filed down a filling that she had the pain went away, never to return. So if you haven't asked the dentist yet, please do so just in case. I asked as a desperate measure just in case and it worked.

I suffer from NDPH for about 10 years now, I have tried various medications, but nothing takes them away, they range from mild - moderate every day and then about twice a day, I will have a time of severe pain. Any suggestions would b most helpful!

BJMAC
Posted 1/21/2013 4:51 PM (GMT 0)
Ben, have you seen the studies on ketamine and depression coming out of Yale? Essentially, unlike antidepressants that take 6 weeks to kick in, ketamine relieves symptoms within an hour for about a week. It actually spurs your brain to repair itself. That might be why you report it as no help for pain, but still the best treatment -- you still hurt, but you aren't depressed by it anymore:)

What kind of pain does NDPH cause? Is it generally a sharp pain or a dull ache or what? I've been through the merry-go-round of neurologists (4 in the last year, each one passing me on when they can't figure out why or how to treat) and there are some things about NDPH that sounds a lot more on point than the current diagnosis of ice pick headaches (yeah, because 30 seconds at a time once a month bears a great resemblance to my every single day for hours on end for 12 months straight...)
Posted 1/21/2013 5:08 PM (GMT 0)
I'm Shannon, and I still don't have an effective diagnosis -- a few different ones have been floated, but none that really make sense.

Basically, on Feb. 10th of last year, I developed pain in my face that occurred every time I sat or laid down, to the point I physically could not stand it, running along all of the bones on the right side of my face. I was 6 months pregnant. Initially it was deemed a sinus infection by the ER doc. Within 3 days it had spread to my left side, throughout my entire head, and stopped being relieved by standing. After a course of antibiotics did nothing, I had a CT scan of my sinuses and they were clear. So they sent me to a neurologist, who prescribed a beta blocker. Not only did it not improve, it got worse.

The neurologist waited for a month to see if it progressed, and when it did, she ordered an MRI to rule out a blood clot. No clot, but a few small lesions. So she ran blood work to rule out several viruses and autoimmune disorders that could cause the clot, everything was normal. I gave birth, and they continued.

Then there was a spinal tap to check for MS and other abnormalities, also completely clear. So they put me on neurontonin. No luck. Tried Lyrica, then verapamil. She transferred me.

The new doctor tried anti-depressants including a 6 month course of amitriptyline, ultram, Imitrex, and fioricet, diclofenac sodium, and Depakote. Nothing. I was transferred again.

Newest doctor claims icepick headaches, and starts throwing anti-seizure meds at me, I've tried 5 of them now, including Topamax. Still nothing. (Though the constant messing with my anti-depressants has given me a nasty case of RLS) A ton of side effects -- I'm a walking pharmacy pamphlet -- including an allergic reaction, but no relief.

I had been on Vicodin during pregnancy because they couldn't try any preventatives. It has been rendered all but ineffective because my tolerance has climbed so high. The ER has tried toradol, but it doesn't work, so they give me dilaudid injections when it gets to be really bad, but I'm starting to get looked at funny when I go in.

It has been every single day, generally a couple bouts at least of a few hours per round. No light or sound sensitivity, though I am more easily irritated by both. It's intense sharp bursts of pressure and pain (it's like the chestburster from Alien, but in my head) that can come anywhere in the bones in my skull, and frequently accompanied by a duller ache in the forehead.
Posted 1/21/2013 5:16 PM (GMT 0)
Kaylee, amitriptyline generally isn't effective within the first 6 weeks, and it builds effectiveness over time -- it can take a few months to see full results.
Posted 1/28/2016 2:45 AM (GMT 0)
Hi everyone!

I was wondering if anyone has seen a significant difference after a lidocaine infusion? I am 18 years old and have had a migraine for a year and a half. I have tried just about everything! I am a little worried to try it because I did a DHE infusion and I did not tolerate it well (side effects), I also suffered from rebound migraines.

Any advice about lidocaine infusion would be great!

Post Edited (MigraineGal) : 1/29/2016 3:53:06 AM (GMT-7)

Posted 1/30/2016 9:59 PM (GMT 0)
Hi All,
This is my first post.I must say its sad but a relief to know that im not the only one suffering from daily headaches.5 -6years ago i started getting headaches which after about 3 months developed into daily headaches.They are bilateral and sometimes with shooting pains.usually they are a dull aching kind of headache and not so bad that i couldnt work.
i also suffered from anxiety and mild depression,i went to counselling for 2 years and that helped both my anxiety and headaches.I must add that i did drink alcohol to excess and dabled in cocaine both of which i gave up 7 years ago about 1 year prior to the headaches developing.
Ive switched doctors 3 times in this period and am seeing a headache specialist.The medications i have tried as much as i can remember are Topomax,Beta-blockers,naproxen,amitriyptoline,some other meds i cant remember,all the over the counter meds.
Recently they have increased in intensity before they were are 2-4 to of 10.Now they are a 6-8 out of 10.
the pain is constant on both temples with shooting pains coming out my eyes and temples and back of head.My headache doctor wants me to take vimovo but im sick of trying all these meds.
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