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Posted 1/30/2011 7:47 AM (GMT 0)
I have had a continuous headache for about 4 years.

I have tried most medications (betablockers, antidepresants, epileptic, calcium blockers and pain killers), had an MRI, seen a osteopath, ciropractor, cranial osteo, accupunture, naturaopath, done elimination diets, and adjusted my lifestyle and stress levels yet nothing has helped to date. I still wake up and fall asleep with a headache every single day. They range in pain level from a 5-6 most days to 7-10 about two - three days a fortnight. I cant find any triggers and physically I'm perfectly healthy. I'm only 23 years old and I have to work very hard to try block out the pain and be positive so it doesn't rule my life. I have another nurologist appointment in a few days, most likely more drugs and more disapointments!

In the past the GP's and nurologists havnt been able to clasify it as NDPH and they still havn't, but I perfectly fit the symptoms of this condition, sounds strange but I look forward to the nurologist hopefully giving my headaches a title and it feels good to know other people are going through the exact same thing. For about the first two years of my headache a lot of people where sceptical, even my boyfriend thought I was exagerating or perhaps even lying, this made even me consider I was crazy and that it was all in my head. I'm now in a better place and can deal with the pain and accept it may be with me for a bit longer yet.

If anyone has managed to cure or find treatment for their NDPH please, please submit a reply.

Posted 1/30/2011 2:34 PM (GMT 0)
Dear Helma, many here can relate to your situation; it is frustrating, and you're right, just getting a diagnosis is a big deal. I often asked if this was just all in my head (no pun intended).
I have been on so many meds, it's hard to remember; topomax worked very well, but it caused breathing issues for me, so I couldn't take it; right now I'm on Vimpat, another seizure med and it's helping; I'm also seeing a physiatrist as well as my neuro.
Do you have a list of the meds you've tried?, if not, make the list as best you can and try to spend some quality time with the new doc. If you can write up a descriptive of your history and what you're going through now, that will help also.
I think "cure" is a word that most of cannot use; manage, control, alleviate; those may be more appropriate. It takes a long time and the right Dr. to find the best combination for you.
Are you in the UK? or here int he States?; an excellent Dr. for this in the States is Todd Rozen who is now with Geisinger in Pennsylvania...
Janice
Posted 1/30/2011 5:35 PM (GMT 0)
Hi Helma,

I'm sorry to hear that you've had a rough run over the past few years. It's certainly frustrating and enough to drive anyone mad. It's fantastic that you have such a positive attitude and continue to push forward.

After 4 years with no solution (yet) it's definitely time to get yourself into a good Headache Center/Clinic. Where are you located? I'm sure someone here will be able to give you a good recommendation, just as Janice has above.

Most of us have multiple headache types. A headache center will be able to better help you identify these. Then you can formulate a "plan of attack" better suited for you. They will also help you to rule out other causes of head pain, e.g. occipital neurolgia, idiopathic intracranial hypertension (IHH), medication overuse headache (aka rebound headaches), etc.

A thing to remember about meds is 1) there are many (100++) that you can try, across many classes 2) even though one drug within a particular class did not work for you there may be others within the same class that will. If you look at the pharmacology of different anit-epileptic drugs (AEDs) for example, you will find that many are very, very different from one another. E.g. the mechanisms of action of Depakote are very different from Topamax, and the same holds true for Lyrica.

A new up and coming drug in the headache world that some people have tried is memantine. Who knows if it would be effective for you, but it is from a different class of drug than those you listed. This just illustrates how many meds there are out there that people haven't heard of or considered.

Have you tried breaking you're head pain with triptans. Sometimes breaking the cylce with injected steroids or toradol is helpful. You can also go to an impatient unit and they can give you i.v. medications.

Given your extensive trial of meds I assume you have tried these, but I'll throw them out there. Some find that supplements (in addition to meds or sometimes alone) can be helpful. The most common are: magnesium, feverfew, vitamin b2, butterbur (processed), CoQ10, and black cohosh (for women). There are others as well.

Keep pushing ahead and best of luck!

Post Edited (EvilFluorescents) : 1/30/2011 12:03:35 PM (GMT-7)

Posted 1/30/2011 7:05 PM (GMT 0)
Memantine didn't work for me and Depakote added severe amount of weight, but a cousin of Topomax worked for quite a while..what was the name of that?? What a goof!
You are so right, though; what works for one may not work for another and a derivative of yet another may work well.
As EF (love that moniker!) says, though, most of us do have multiple headache types and it takes a lot of work and frustration to get to a happier place. Remember that you are not making these up; they are very real, but you must get to a headache specialist!
Posted 1/30/2011 8:54 PM (GMT 0)
Hi Helma,

Sorry to hear you have been suffering so. Can I ask does your pain fluctuate throughout the day? Is your pain on one side of your head? Do you get any other symptoms, like a droopy eye, blocked nose on the affected side or anything else?

I have a rare Headache which gives me continuous pain and it took the Docs years and years to identfy. Have you tried Indomethacin? If your Neuro wants you to try it make sure you take a tummy protector like Lansoprazole or Omeprazole with it.

take care

Ann
Posted 1/30/2011 11:01 PM (GMT 0)
Thankyou everyone for your quick replies and support.

I live in New Zealand and their are no headache clinics here, only nurologists and they seem to only have a very basic knowledge of headaches (I end up telling them what to test for and what I want to try).

I havnt yet tried Lidocaine IV (sounds very scary). has anyone had success with this.

I've had an MRI but not yet a lumbar puncture to rule out cerebrospinal fluid issues, sphenoid sinusitis and various viruses. I might suggest to nurologist tommorow (again reluctant because it sounds painfull).

There are so many different medications to try! and all the preventative type ones I've been told to try for at least a couple months, its a slow process, and also all the chemicals then builds up and needs to be procesed by your body, not great in the long term I'm sure.

I havn't taken any medication for about the last 6 months.

I'll try get a printout of all the medications I've tried from the specialist tommorow. I wonder if I've been trying them all in the wrong quantities (dont have much faith in the specialists here in NZ)

Thanks

Posted 1/31/2011 4:47 AM (GMT 0)
Yes, drug trials are an exhausting process. Having a physician that you don't trust makes it much harder.

I have no idea about cost, logistics, insurance, but could you fly to Australia and go to one of their headache centers?

My personal experience has been that many non-headache specialist neurologists don't understand migraine/headaches well (there are those wonderful exceptions though!). I've really noticed this when it comes to medication dosing. Many migrainuers are extra-sensitive to meds. We have to increase our dose slowly and in smaller increments.

E.g. amitryptaline depression final dose is 100-150 mg; start with 25 mg (increase in 25mg increments)
migraine final dose is 50-75mg; start with 10 mg (increase in 10mg increments)

Your doctors are correct. You really do have to give each drug 2-3 months before moving on. I've had meds kick in at the 3 month mark, just before I was about to go off.

Vitamins and supplements can take longer to kick in. Don't give up too early.

I'm sorry you're having to suggest to your doctors what tests they should run. I know many of us have been in the same boat.

I'll give you a quick rundown of tests that I have had performed (that I can remember off the top of my head. If I remember more I'll list later). Hopefully it will provide you some food for thought.


Blood tests:

RBC Magnesium levels (NOT serum concentration)
CBC
Chem20
Vit. D levels (there are two tests for this; one is more effective. sorry I can't remember which at the moment)
Iron levels
Lipid panel (ie cholesterol test)
B12 levels
homocysteine levels

Other tests:

Sleep Study (polysomnography)

I've never tried the lidocaine IV. Have they tried steroid injections yet? There are many, many IV drugs that are commonly used in inpatient units. Maybe your doctor can contact a US or UK specialty inpatient facility and ask for protocols.

I would find books about migraine written by recognized specialists in the field. It's always good to empower yourself and increase your knowledge base.

Best of Luck!
Posted 1/31/2011 11:42 PM (GMT 0)
I suffered from chronic daily migraines from a very young age. As I got older they seemed to get worse and worse. Eventually as I hit adulthood they became disabling I tried everything from prescription medications to botox to massage therapy, chinese medicine, acupuncture. You name it, I tried it. I even traveled to various doctors across the United States. Nothing seemed to work long term. Some medications would work for a little bit but it the migraine always came back. The only thing that provided relief from the bad ones was DHE. To get DHE treatment I had to stay in the hospital for 4-5 days. It would last for a little but they would always come back.

In 2008 I was referred to Dr. Ken Reed. He is based out of Dallas, Texas. He implants neurostimulators into the head (just right under the skin nothing invasive) that control chronic migraines. I had the surgery in 08 and I seriously got my life back. I still get migraines every once in a while (during that time of the month or when the weather changes) but now with the help of my stimulator I can take an advil and they are gone. I now sometimes go months without even a headache!

I HIGHLY recommend checking out his website is : http://ascendantneuro.com. Watch the videos they are very helpful.
I wish the best of luck to you and hope that you are able to find some relief. Migraines can really take over your life and leave you quite hopeless.

God Bless!
Posted 2/6/2011 5:58 AM (GMT 0)
I saw this and thought of you:

http://www.mdjunction.com/forums/ndph-support-forums/general-support/2380526-my-continuing-committment-to-ndph

looks like some people are having success with topamax and seroquel.

Delving into that forum might be helpful as it is specifically for NDPH.
Posted 2/6/2011 10:53 PM (GMT 0)
Hi Helma,
My NDPH hit me September 22, 2006 (at the age of 24) and I haven’t had a pain free day since. I also started getting this summer extended lightening pick headaches (I can never remember it’s name) and the migraine component has always been there. I personally have tried IV Lidiocaine and it’s not scary. It makes you feel a little weird and it might make your lightly hallucinate, but for me at least it wasn’t bad. What was bad for me is that I had the worse rebound headache ever. I got out of the hospital, hopped a train home and then ended up in the ER that night. Many sighs. But I’ll be glad to answer any questions you have on it. I’ve also done a Ketamine treatment without much success. (However, Ben [korbnep ] has gone through the treatment several times and it has always helped him). It was a 24 hour IV. I have also heard through the grapevine that they are putting some people into Ketamine comas to see if they can “reboot” your nervous system.

Do you have a chance to get to the US? I’ve been going to a headache clinic that is attempting to help. (Well, they all try to help, but some have more resources then others). I am a rough case since I am really resistant to drugs and other therapies. I spent half the summer in and out of treatment.

I have taken many drugs and combinations, including the Topamax and Serquel, so if you have any questions on them or other drugs I’ll try my best to help.

I wish you good luck and pain free.
Peace.
Michelle
Posted 2/8/2011 11:38 PM (GMT 0)
Hi everyone

I had my specialist appointment last week with the nurologist.

It went as well as expected, again I passed all the physical test with flying colours (should be a good thing, however it means no problem found so no quick fix).

He thinks that they are more migraine based then NDPH, which I disagree with because my headache only displays migraine symptoms when its really bad, also it definitely didn't start as a migraine. O well I guess its just the terminlology.

Hes started me on 4 different medications (all at the same time!!)

- Sumatriptan 50mg for 4 days

- prednisone 20mg for 1 week

- tenoxicam 20mg for about 8-12 weeks

- gabapentin 300mg for about 8-12 weeks.

Havn't had any improvment yet even with the shorter term painkiller ones.

Will keep taking the other two for a few months, so wait and see.

My nurologist doesnt do botox, it's something I'm quite keen to try as I've heard good results. Has anyone had any experience with this? Also has anyone managed to get it done by someone who isnt a pain specialist ie at a skin/beauty clinic perhaps under the advise of a specialist?

Posted 2/9/2011 5:55 AM (GMT 0)
Hi Helma,

Sounds like an interesting mix. Based on what he is prescribing, my guess is he is trying to break the pain cycle. It's definitely an unconventional, "outside the box" approach.

Sumatriptan is in the triptan class of drugs. It's usually given at the first sign of migraine to stop it in it's tracks and prevent it from progressing. 50mg is the minimum effective migraine dose.

Prednisone is a steroidal anti-inflammatory. It's given to people with pinched nerves to bring down the swelling. It's injected in migrainuers to break a severe migraine.

Tenoxicam is a non-steroidal anti-inflammatory. Migrainuers usually use indomethacin and ketorolac (it's in a different sub-class of NSAIDS). I would be interested to hear what you think of it.

Gabapentin is an anti-epileptic (AED), but is not all that effective at preventing seizures. It's a much better chronic pain drug and is prescribed to fibromyalgia patients and migrainuers. For migraine, the effective dose is considered 900-1800mg (broken up into several daily doses). 300mg sounds more like a starting dose that you would quickly increase from. I've used it for a couple of years. You may be more familiar with it's more potent "upgrade" (lots of commercials), Lyrica.

I've had botox injections. It's wasn't my magic one hit wonder, but I too have heard that it can be VERY effective. The trick with botox is to get it injected by someone who is very experienced at giving it for migraine. The skill of the person injecting is paramount. Like meds, you have to give it time before you can judge it's effectiveness (usually about 3 rounds of injections).

Post Edited (EvilFluorescents) : 2/8/2011 11:03:07 PM (GMT-7)

Posted 2/28/2011 1:58 AM (GMT 0)
Ndph: I have had it for six years and had to stop working after two years. No cure, no preventative drug ever worked. Neurologists don't get it; you need a caring headache specialist willing to help you physically and mentally cope with the pain and disability. My question: for those of you who experience pain at level 8-10, as I now do, how do you cope with the pain and disability, and two, how do you manage the basic activities of daily living when even sitting upright is excrutiatingly painful? I know exercise nutrition and proper sleep are essential but if you cannot get out of bed, go to a store, or cook a meal, what is one supposed to do?
Posted 2/28/2011 2:13 AM (GMT 0)
Topamax: the few med articles on Ndph suggest Topamax as a preventive drug fail to mention the psychiatrists call it the "slow and stupid" drug. You will fall into a stupor. Driving will be dangerous. You will lose the ability to function at work. And then depression and suicide thoughts will be your new secondary problem. You need to be alert to this problem and deal with it head on and with your doctor. Eventually you will not know if living with a massive headache or dying at your own hand is the better option. No one writes on these forums how long they had the headaches. The med literature says the average is 3-5 years. I am at year six and my dreams are all cancelled until the headache reaches a manageable level on a predictable schedule. I have yet to find a shred of hope that life can go on in a rewarding manner with this disability.
Posted 3/2/2011 1:39 AM (GMT 0)
NDPH,

My son has ndph for almost three years.  He took topamax for several months and I think it helped his h/a a little but being in high school and trying to learn was very frustrating for him.  He is an A student and felt incredibly stupid on topamax.  Before he stopped taking it, I think he was not getting as much relief as he did once he was first tirated up on the medication.  I wish doctors would talk to patients more about side effects and what to expect.

I understand what you mean about the negative outlook for ndph.  I am not convinced that there is enough medical knowledge about it.  I also think that it is still worth looking for secondary causes.  I am not a doctor, just a mom.  I am not sure where I read it but I think that it was one of the Jefferson Headache Clinic doctors who stated the differential diagnosis for ndph which listed the other possible causes like lyme disease, sleep apnea etc.

I wish I could be more helpful.  All I want to do is help my son and anyone else who suffers.

Missy

Posted 3/2/2011 5:04 PM (GMT 0)
Missy: I think it is worse for the family that feels helpless than the headache sufferer. But as the ha gets worse I could have used help with basic chores, cooking, laundry, running errands, even just getting things around the house so I didn't have to get up and worsen my headache. Of the few medical studies I read the younger population has the greatest chance to recover from Ndph within a few years. I have not seen anything that suggests those persons who get it later in life recover. Your son should take faith in the fact that he is young and while 2or3years of a break might seem like his whole world right now, he has decades to get back on track and enjoy life and he can look upon this as a mini break to explore and reflect on what is important in life. If I knew at 17 I would be this disabled in the last half of my life I would have spent time with friends family and traveling and not working 14 hour days.
Posted 3/3/2011 4:49 AM (GMT 0)
Hi Missy and NDPH,

Yeah I know what you mean. I'm ramping up on Topamax right now and am taking the SLOW taper approach. The cognitive fog is still frustrating even at this gradual rate of increase. I really hope 1) these side effects dampen (substantially) and 2) the med works for my M's.

Missy that's really interesting that you mention the differential dx's. Out of curiosity, is your son's pain (completely) localized in his head/neck region?

It's really fantastic that your son is getting treated at Jefferson. They're certainly a top 5 US headache treatment (and probably a top 1 or 2) center. He is in great hands.
Posted 3/8/2011 5:35 PM (GMT 0)
i had severe migraines since about 16. mine were related to mainly hormones. Any birth control of any type for females and it took awhile for me to figure that out. After i had my kids and didn't go on birth control they settled a bit but even my own that i produced put me over the top. i am older than you i am now 40 but i had my three kids and at 36 had a complete hysterectomy. helped a ton. this is not a current option for you i am sure.
i went to mayo clinic for mine that is when i went off birth control, put on topomax starte at 25 mg at night worked up to 200 mg and took prozac low dose as it is an ssi and when you get migraines your brain reads that you have no seritonin... prozac looks like seritonin to your brain a pseudo seritonin. and it also helps with depression for feeling crappy.
I had a metabolic panel done.. by b12 was low
I had an eliza test done (which tests for all allergies) big triggers for some. one guy drank a glass of milk every night before bed .. migraine daily... well that was his trigger stopped milk he was miraculously cured. i at the time had no allergies.

IDK what pain meds you take but any narcotics can trigger more headaches if they are not taken with other meds, especially taken daily... migraines are an art of their own and a vicious circle. I would also look at Massage therapy or physical therapy for your neck . I had also been to a pain clinic that helped a lot with how to deal with living with pain and learned alot and a physical therapist taught my husband how to manipulate my head and neck correctly.

I have lived with them for a long time.. better now than they were but i still have them sneak it sometimes and scare the hell out of me.. : ) I hope some of these ideas give you somewhere to start...
Ps.. routine is so important... i think an ice pack on the back of my neck in the darkest room with maybe some really quiet music and deep breathing helps alleviate and ease the pain a ton
Posted 5/12/2011 2:42 AM (GMT 0)
On December 6, 1994, I suddenly got a severe headache and I have had headaches every day since. I have been too more neurologists than I can remember, I have tried more drugs than I can remember and have had so many different procedures and treatments that I have lost track of those as well...but, nothing ever changes...i wake up with a terrible headache and neck pain every morning, then the severity changes through the day...I am so frustrated...and sad...these headaches have had such a profound effect on my life...its hard to enjoy anything...why has there not been more research on these headaches...it seems there are a lot of people out there who have them...does anybody out there know anything that I don't?
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