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invisiblewarrioradvocate · 10 years ago

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Letting it all hang out

The age old quotes.... "what doesn't kill only makes you stronger" or my favorite...."it's all in your head"

Now there is a list of things not to say to someone who has a chronic illness, depression, anxiety, the list can go on and on. Now I pretty much have become a research junkie. Looking for something new or something to help those who have NDPH, chronic illnesses, depression, anxiety, etc. I found this list a while back reading blogs. *A version of this article originally appeared on Pins and Procrastination, here is a list, they are the top 15:

1. You don’t look sick

Not everyone “looks like” what is happening to them. You would never say “you don’t look like someone who is going through a terrible divorce” if your stressed out friends still manage to put on a brave face and pull themselves together. Not all illnesses are manifested outwardly.

2. You’re too young to be sick

I get this one more than #1. You can get ill or go through any kind of stressful situation no matter your age. Age is completely irrelevant here. Young, unfortunately, does not always equal disease-free. When you tell someone they’re too young to be sick, it just makes them feel even more guilty or embarrassed for having an illness they have no control over when society expects them to be healthy. And, moreover, just because you have an illness, doesn’t mean you want to be called “sick.”

3. Everyone gets tired

That may be true. And most people are not getting enough sleep and rest. But the difference between someone with chronic illness associated fatigue and an otherwise healthy person is the level of fatigue. If I go out drinking with friends and stay up late, it could take me a week to recover. I have to carefully plan every activity of the day so that I can save energy to do all of them. The best line I’ve heard for this one is: you don’t know what fatigue is until you’ve had to rest after taking a shower. Unless you literally think to yourself “how much energy will that take?” for every single action you take during the day (including brushing teeth, combing hair, standing to do dishes, putting on makeup, cleaning, driving, etc.) then you experience a completely different kind of tired than people with certain chronic illnesses. I’m not saying you aren’t tired. Everyone does get tired. But my kind of tired is not the same as a healthy person’s kind of tired. If I push myself past the amount of energy I have in a given day, the consequences are pretty bad. See the spoon theory for more about this one.

4. You’re just having a bad day

I know you are trying to motivate someone and make them feel better when you say this, but it doesn’t come off like that. Personally, only about 10 people in my life see me on my bad days. If I am outside, dressed, and active, that is a good day. So instead of making someone with a chronic illness feel supported and motivated when you say this, it feels like you are brushing off their symptoms. Chronic illnesses are with you for life. You can change your lifestyle and find treatments to help them, and some of them can be “managed,” but for the most part, that person will have to deal with a lot of bad days for many years to come.

5. It must be nice not having to go to work/school

This one. Oh man. If you only knew. Sure, it can feel that way when you take a day to play hooky or a long vacation. But when you are forced not to go to work or school, even when you want to be there, it is a different story. People with chronic illnesses don’t want to fall behind in school and fight with the school district to get the accommodations they need. People with chronic illnesses don’t want to miss work and not be able to generate an income. Everyone wants independence.

Personally, I loved school and hated every day I wasn’t there. It is way more stressful not being in school and knowing all the work you will have to do to make up for it than being there on any given day. And I have loved the jobs I’ve had and been sad about every day I have missed. Believe me, it is not nice having to stay home instead of being productive, just trying to find ways to distract yourself from pain or exhaustion. It’s fun to watch TV for a day or two, but after that, I feel trapped. I guarantee anyone with a chronic illness would gladly trade in their symptoms for a full time job.

6. You need to get more exercise

Exercise is really important and no one is denying that. It helps pretty much any health condition. But it isn’t a cure-all. For someone like me, whose heart rate regularly reaches 120 bpm just from standing still, exercise isn’t always doable. I do “exercise” but it is more like physical therapy exercises than what most people would consider a good work out. But remember, everyone has limitations. For people with chronic illnesses, their physical limitations may make it harder for them to do traditional exercises. And even if they do, it will probably not be a cure for a condition that is caused by something totally different like an immune system that attacks itself or a nervous system that doesn’t regulate itself correctly.

7. I wish I had time to take a nap

See numbers 3 and 5, which relate to this one. To someone with a chronic illness, to whom napping is not a luxury but in fact a necessity, hearing someone say this is as much a slap in the face as hearing someone say they wish they could take a break from work or school too. Hearing anyone “wish” they could have a part of a chronic illness just shows how misinformed they are when they say this. Wishing you had more time is pretty much a universal wish. But wishing you had the time that a person with a chronic illness has is not the same. If your wish is granted, you can get more time, but you also have to get the pain, the exhaustion, and the difficulty figuring out how to be productive in society. Remember that next time you have the desire to say this.

8. The power of positive thinking

Positivity is really important and having a negative outlook can negatively affect an illness. But having a positive outlook will probably not cure it. I’ve gone through all the stages of positive thinking and denying my illness. I have thought, if I just put my mind to it, I can do that. And then I’ve suffered the consequences of pushing myself beyond my limits.

Positive thinking that is productive for chronic illness sufferers is not telling someone that thinking positively will help them with their symptoms. Instead, productive positive thinking is finding the positivity that comes with their illness. For me, if I hadn’t had POTS, I wouldn’t have gone to Lake Forest College to stay close to home and my doctors. It was there that I learned and discovered my passion for environmental studies and met the love of my life. I wouldn’t have found an inner strength in myself and learned to value the time I have in the same way I do. That is productive positive thinking. But it’s not a cure.

9. Just push through it

Hearing this makes me want to hit my head against a wall. This goes along with #3 “Everyone gets tired/ headaches/ back pain/ insert symptom, just push through it.” The problem with this statement is the underlying assumption that a person with a chronic illness is not already pushing themselves. Every day I push myself. I push through my symptoms all the time. If I didn’t, on my bad days I would not eat, walk, or shower. And the same is true of anyone with a chronic illness. Remember: there is a difference between pushing and pushing past your limits. Pushing yourself is good and necessary. But pushing past your limits can set someone with a chronic illness back for a while as they recover from overextending themselves. Suggesting to someone to just push through it may not feel insulting, but it is like telling a marathon runner to just go faster on their last mile.

10. It will get better, just be patient

I’m sure everyone who says this truly means well. And it is true of a lot of things that patience is important. But not all chronic illnesses will get better. Patience is a virtue, and an important one. But please don’t say this to someone who has an illness that they will have for their entire life. It could get better, but it also may not. So figuring out how to live within the confines of your illness and make the most of it is more productive than expecting to get better. This is not to say that you shouldn’t hope to get better- just that you shouldn’t count on it. That’s denial.

11. Have you tried ____

… the paleo diet, acupuncture, super magic moon crystals, this weird new therapy that I heard about one time but know nothing about? Unless you are a medical professional and/or a person with a chronic illness has asked for your advice, please keep it to yourself. I haven’t tried super magic moon crystals, but I have tried just about everything else including alternative and new treatments. I’m actually trying a new one now. And I probably won’t stop trying because science makes advances. But someone with a chronic illness doesn’t want to defend themselves to you on how they have already tried or don’t trust the efficacy of a certain treatment, especially if your evidence is only anecdotal. I know you probably mean well and are trying to help, but just assume that someone with a chronic illness has tried every option available to them. Everyone wants to feel good.

12. You should stop ____

See number 11. I know you mean well and you want to help. Everyone has bad habits they should probably stop. Did you know that one of the parts of my treatment is to increase sodium in my diet? So if you want to tell me how you or someone you know of feels so good because they cut out salt, it will go in one ear and out the other. What works for one person does not always work for another. Please keep your unsolicited unprofessional anecdotal medical advice to yourself, because you are wasting your time and possibly insulting or discouraging someone with a chronic illness.

13. It’s all in your head/ you’re just stressed/ depressed/ anxious

If I had a nickel for every person (including doctors) who told me this before I was diagnosed with POTS (and some afterwards) I would have really heavy pockets. I guess when we don’t understand something and don’t look physically sick we assume it is mental. It must be cultural or part of human nature based on how often this is said to people with chronic illnesses. Stress, depression, and anxiety can all make symptoms of chronic illnesses worse. But they do not usually cause them. Chances are when you say this to someone you are only contributing to their stress, not helping them see something they never saw before.

14. You need to get out more

A change of scenery can do some good. And I believe that spending time outdoors is good for your health. But when you say this to someone with a chronic illness, it doesn’t sound encouraging. Someone with a chronic illness wants to get out more (see number 5). All it does is make them feel guilty for not being able to do something they already want to and are probably trying to do. So before you say this, remember that they probably agree with you and they don’t need the guilt on top of it.

15. You take too many medications

People differ on their opinions of whether medications help or are bad for you. In some cases they are medically necessary. This is one of those things where you should probably keep your judgement to yourself. If I take a medication, I have researched the side effects and I have tried every other lifestyle change and vitamin that I can before I get to that point. Not everyone wants to just pop a pill to solve a problem. If someone is having a symptom that is controlling their life medication is sometimes the best way to manage it. People with chronic illnesses do many things to try to live as normal life as possible, and medication is one small piece of that puzzle. It is part of a lifetime of adaptations, treatments, and figuring out how to live with a chronic illness.

Now repeating this list isn't going to change what people say. Or how they think. But maybe it will make some think. Now I have suffered for more years then I care to think about at this point, but there is a reason.

I don't know how to pretend to be someone I am not, or not to be passionate about something I strongly believe in. People call me opinionated or whatever. I DON'T CARE!!!!! If you hurt me I will tell you, if you lie, I will call you out. I have gotten past that point of caring what others think. Why, some would ask. Simple, because I only have to wake up and be okay with who I am, when I look in the mirror.

I know it isn't easy for my 2 boys, who see me suffer daily. But I hope they are proud of me for not backing down or fighting. I suffered at a young age, with things I had no control over, nor did I understand. I didn't understand why someone who said they loved me, how they could hurt me so bad. But I did something we can all use to do at some point, even with our illnesses. FORGIVE

By forgiving, even today, I quit being a victim and became a survivor. A fighter. Someone who won't be held down, because it makes someone else feel better. Now I don't have all the answers to life's mysteries, if I did OH BOY, watch out!!! But I write this, (which has taken about a week to write) with the promise, I will do anything I can to try and help just one person!!!

Thinking about, some of you would ask why I posted the 15 things you don't say to someone with a chronic illness, if I wasn't going to say anything more about it. Now, I could dissect each of the 15 points listed above, over analyze each word, but that won't get the point across any differently. I can't make someone understand what they read or how they interrupt the words. I say it because I know most of us are tired of hearing them. I hear them now, but then I become cynical because I turn the tables a bit. Asking them things that are completely absurd. Now it pisses some off, but I have gotten others to think bout what they are saying.

I don't know when or how I will get answers, but at some point I will.

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*A version of this article originally appeared on Pins and Procrastination.

Susie Helford is a Chicagoland-based blogger writing primarily about homemade green cleaning and beauty products. Her blog, Pins and Procrastination, is about pinterest-inspired projects (that also happen to be great for procrastination purposes). She lives with Postural Orthostatic Tachycardia Syndrome, a form of dysautonomia.

- See more at: http://asweetlife.org/feature/15-things-not-to-say-to-someone-with-a-chronic-illness-or-invisible-illness/#sthash.n0N31oFn.dpuf

#NDPH chronicpain invisibleillness invisiblewarrior fightingthebattle neverquit

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invisiblewarrioradvocate · 10 years ago

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Well I haven’t posted for a bit. I belong to support groups and everyone seems to be starting blogs about their experiences. Many people with chronic pain/ chronic illness experience the same things, but for most we all experience it in a different way. We all feel unbearable pain, but have...

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invisiblewarrioradvocate · 10 years ago

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Well I haven't posted for a bit. I belong to support groups and everyone seems to be starting blogs about their experiences. Many people with chronic pain/ chronic illness experience the same things, but for most we all experience it in a different way. We all feel unbearable pain, but have different pain tolerances.

Although I love this poster, some days I do just want to quit. The pain feel like I am being tortured: being set on fire, stabbed with thousands of knives, my brain at the point of just exploding out of my head, the list goes on and on....

I hear all the time... are you sure your not just looking for attention For most people who really know me, knows that I do not like attention. They say if you are in that much pain, why do't you go to the ER and get some pain meds. Well for one I don't have the money to go to the ER, so if I don't have the money for that, how would I be able to get pain meds? Second I don't want someone to call me a drug seeker nor do I want to become addicted to anything. So yes I will suffer in pain, most of the time no one knows, why? Because I don't tell anyone. I don't want people to feel sorry for me, I just want there to be awareness. I believe the more people know, the more awareness there is... everyone wins in the end. So why do a blog? It is awareness, I hope that one person maybe can relate and say someone does really understand.

I know I don't have all the answers or even all the knowledge. I will from this point out forget more then I will remember. For as a side effect for me, I have a problem taking thoughts/ memories from short term memory to long term, also signs of early onset Alzheimer's. I have thoughts but lose them very quickly, so usually it takes me a while to write anything. I do have moments where I have no problem, but most of my thoughts fly away.

If someone had told me 5 years ago, this was where my life was headed, I would have laughed. Because, not only being a single mom, I worked 50 hours a week at a sports bar. I wasn't rich, but I was able to provide everything for my boys. I have been reduced to most days, it being so painful to walk or move. Not only do my joints hurt, my bones, my head (NDPH), but my skin hurts as well. I have become a chronic illness warrior. If anyone ever has questions please don't hesitate to ask.

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invisiblewarrioradvocate · 11 years ago

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Stages

Published by: Sarah on 11th Mar 2014 (http://living-with-ndph.network-maker.com/members/profile/24/blog-view/blog_6.htm)

I don't usually write my feelings or thoughts. I have a headache journal, but I thought I would try this. I have been battling these headaches for 4 years- unrelenting, unforgiving, blisfully tormenting 24/7/365 for the last 4 years. Recently, a friend lost a loved one and I witnessed them going through the 5 stages of grief. Denial/ Isolation; Anger; Barganing; Depression; and Acceptance. In a way that is what we all have been dealing with. All these stages.... do we really get through them or do we just say we do? Just like we always say we are fine to the "outsiders"- you know the ones, who don't know what it is like to suffer day in and day out, with uncontrolled headaches. This weekend I was told by a family member, that I couldn't be in the pain I say, because I wouldn't be able to do anything/ cope. They said I am fully functional... I am so glad they know my life, they know my pain. Honestly, this made me a bit angry... not because they said I was faking it. But because they have never taking a second out of their pain free lives to ask, to try to understand, what I go through every day or night. They just sit by and judge what they don't see. So have I really made it through any kind of stage or coping mechanism? I do what I have to do to get up every day, to have some kind of resemblance that I am not in as much pain as I am (for my boys sake). Does that make me wrong?

Comments

4 Comments

by Keith 27 days ago

No it makes you desperate and exhausted. I completely understand your pain, your lack of understanding from others, and the disgust at our doctors far more concerned with doing another procedure and making sure its not all in your head than actually making our lives livable. I have a 3 year old and a 6 year old and a wife of 18 years. They love me and I love them but they do not have a clue what is going on every day inside my head. Don't give up hope. I have found some relief although not nearly enough.

by stef 22 days ago

I am sorry that no one understands your pain. I am the mother of a 14 year old daughter suffering with NDPH. I wish I could take the pain away from her. I cry every night for her. She pushes like all of you and I know that even when she says she is fine she is not. We have been dealing with this for over 5 months now. And no one understands what all you guys go through. I have watched my energetic daughter change into someone else. It has taken her friends, her cheerleading and her gymnastics all that she loved. She has missed her first high school dance. She has missed most of her first year of high school. She is being homebound schooled. We have tried everything and like all of you it is relentless.

by Catwin 22 days ago

We become good actors. I put in a good front for work but after five years of this I often come home and shut myself in my dim room and cry. Work is all I can manage, I have next to no outside life. Those of you with children and families have my utmost admiration. You are so strong and determined.

by Sarah 21 days ago

Thank you everyone... this "disease/ illness" is so hard to explain or describe. Just remember you are not alone in this

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#chronic pain #chronic illness #NDPH #new daily persistent headache #stages

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invisiblewarrioradvocate · 11 years ago

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Just another day

Published by: Sarah on 15th Apr 2014 (http://living-with-ndph.network-maker.com/members/profile/24/blog-view/blog_8.htm)

Do you feel this way? Or how bout hearing "it is all in your head"? I guess it has become to the point where, I don't care what anyone says or thinks anymore. I have become so numb and uncaring because you don't understand. I try to be nice and put a smile on my face, but in reality all I want to do is punch you in the face. Why don't you live my life for 1 week, 7 days... everyday, constantly in pain and then tell me how I should feel or what I should do. Yeah, I suppose you could say I am angry. It isn't something I am proud of, but it is what I am. Angry because my life isn't what it use to be or what it will ever be again. It like everything adapts to the situation you are in: good, bad, indifferent, ugly, whatever you want to call it. 4 years ago, I was healthy, single mother, working 6 days a week at a job I absolutely loved. Now I am diminished to a shell of a human being, barely existing. In a body riddled with so much pain, I hate moving. I have 2 people that keep me going everyday, when I want to give up. I don't want to be selfish, but I do wonder if they would be better off not having to go through this with me. My boys don't have much of a choice, but yet they have their own voices, so they could choose to not go through this with me. I know I am not an easy person to get along with most of the time. And for that, I thank you!!! I love my boys more then anything in this world, they are my world! I have been cursed with this pain but blessed because I am able to see what life is really about. I found this on another blog, so I thought I would share it with you.... (http://invisibleillnessbattle.wordpress.com/2013/09/07/6-things-about-chronic-pain-you-didnt-know-you-knew/) 6 Things about Chronic Pain You Didn’t Know You Knew

Posted on September 7, 2013by leitis23

Chronic pain isn’t just constant pain, though that would be more than enough for anyone to handle, the truth is chronic pain always brings friends. These added challenges are obvious, but rarely taken into consideration by “healthy” people. Remembering that like all bullies chronic pain travels with a gang can help to better understand the life of someone in chronic pain.

Pain is exhausting. We have all had a bad headache, a twisted knee, or a pulled muscle, and by the end of the day it is a monumental effort just to read the mail. You may not have consciously realized it, but the pain that has relentlessly nagged you through out the day has drained you as bad as any flu. Even when you try to ignore pain it will stay in the back of your mind, screaming for attention, draining away all of your energy. With chronic pain this is amplified because it isn’t just one day, it is months or even years of struggling to live with this very demanding monkey on your back. I’m tired just thinking about it.

It just sort of snuck up on me.

Pain causes poor sleep. You would think that after a long day of fighting with constant pain sleep would be a great reprieve. Unfortunately, this is just a dream (pun intended). First chronic pain can make it hard to get to sleep and stay asleep. The pain will pull you right out of deep sleep. Many pain patients take medications to sleep, because sleep is vital to your health, chronic pain, or no. Even when you do sleep, the pain signals continue to your brain and can cause sleep to be broken, restless, and oddly enough, exhausting.

Pain makes you cranky. Chronic pain sufferers aren’t (all) just cranky buggers by nature. Pain drains you physically and mentally. When you are in pain even the simplest things feel overwhelming and people tend to react accordingly. You may have only asked your chronic pain spouse if they would like to go to a movie, but in their head they have considered if they can sit still that long, how much medication it would require, if they have the energy, if they will stay awake through the movie, how high their pain is now and how it might increase, if they go will it make getting through tomorrow harder, and most importantly, given all this, will it be any fun. They didn’t grouch at you for the fun of it, pain just makes it very hard to remember that everyone else is coming from a totally different perspective, where a movie is just, well, a movie.

I’m NOT CRANKY!

Pain kills your concentration. Most chronic pain patients fight like crazy to live a normal life. They try to ignore the pain and go about their days, but it’s just not that easy. Even when you ignore pain, push it to the back of your brain and focus on, say, work, pain doesn’t give up. You can sit at your desk, working on your computer, trying to concentrate, while your pain plays the part of a toddler desperate for your attention. Pain will poke you, tug at your clothes, spill juice on your keyboard, scream your name and try to use your arm and leg as practice for the uneven bars. No matter how hard you try to tune it out, part of your brain is always processing the pain and it often pulls your concentration to terrifyingly low levels.

Pain damages your self esteem. The pain has made you tired, cranky, and killed your concentration. Being exhausted all the time makes everything more of a challenge than it should be, your quick temper has strained or destroyed once strong interpersonal relationships, and your inability to concentrate has hurt your job performance. You can’t do what you want to do with your time even when you try and it seems like everyone is mad or unhappy with you no matter your efforts. Life as you know it is crumbling and all because of …you? Most pain sufferers blame themselves for these failings, remembering that they used to be able to do everything. They see chronic pain as a sign of weakness or a personal defect that they should be able to overcome. The end result is that on top of everything else chronic pain damages your self esteem.

Appearances can be deceiving.

Pain causes isolation. When you’re in constant pain the last thing you want to do is attend the company party, the neighbor’s backyard barbecue, or even small gatherings with your closest friends and family. Your friends and family are still the light of your life, but the physical and mental energy it requires to go out and be social can be just too much to handle. You start to bow out of parties and cancel plans, not because you don’t want to go, but because you just can’t. Eventually people stop inviting you, calls to make plans decline, and the scary thing is you don’t mind. The pain has slowly, but surely, isolated you.

Take three, they are small.

What about you? What are some effects of pain that seem obvious, but aren’t? I know this is all over the place, but I hope it helps in the slightest that one person who is fighting daily.... Remember to stay strong and never believe you are alone, becuase I will always be there for you, even though I don't know you. We all need that one person we can go to... to either vent or just share a great moment. Share with someone who understands the invisible illness that is chronic pain.

#chronic pain #chronic illness #NDPH #new daily persistent headache #heard it all before

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invisiblewarrioradvocate · 11 years ago

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One day in my life

Published by: Sarah on 20th Apr 2014 (http://living-with-ndph.network-maker.com/members/profile/24/blog-view/blog_9.htm)

First, I would like to say, writing this is not easy for me. I don’t usually express my thoughts or feelings to others, for the simple fact that this is my life/ problem not anyone else’s. I am not looking for sympathy or anything, just thought it was time, because I keep getting questions about what is going on with me. I guess I have decided it is time to bring awareness not only to my chronic pain, but others as well. Granted I do not know what anyone else goes through, I do know what I feel and go through (most of the time).

I have New Daily Persistent Headaches (NDPH), I have been suffering from these headaches for 4 years this month. It is like one day the light switch turned on for headaches and has never been shut off. I experienced migraines when I was younger, they were the typical text book migraines. Light/ sound sensitive, blah, blah, blah.

But this headache is different, there is pain in the middle of my head/ brain, from within not in the frontal area (migraine pain), or back of the head/ neck (stress headache), cluster, sinus, ocular migraines, hemicranias continua, status migrainosus, etc., of the 150 different types of headaches that have been diagnosed over the years. I have continuous pain, excruciating pain that doesn’t stop. I have this pain 24/7/365. I can only describe it as from within, pressing upward and outward, lots of pressure from within but also pressing down on my neck. It feels like a 20 lb. bowling ball is resting on my neck at most times. I also have fibromyalgia (which is unexplained pain throughout my body), I have been diagnosed with an amnesiatic/ early onset Alzheimer’s tendencies. Because of this I also suffer depression and severe anxiety. The list can go on and on. The main thing that it boils down to is I have… CHRONIC PAIN.

I know there are many people in this world who suffer from chronic pain, over 1.5 billion (in the world) people to be exact. Which seems like a staggering amount, seems like that number is too high. I don’t pretend to think I am worse off than anyone else, who suffers. We all feel the pain differently, we can cope or deal with things.

I have tried so many different medications, not only prescription but samples from 2 different neurologists over the last year, it ranges in one year about 75 medications. I have tried several different treatments, infusions, chiropractic, meditation, pain management, etc. I don’t take pain medication because it doesn’t work for me. And a misconception, sex does not cure all headaches, yes it is proven it can help some… but it does not help me! I have not found anything to relieve this pain, in any way shape or form. I have not had relief from this pain since 2010.

I don’t remember much of any day. I have lists to remind me to do things. I have 3 different calendars I look at to remember anything and everything important. And yet I still forget many more things then I care to admit. I admit I don’t remember much about anything, I don’t remember my days, conversations, even as much as I hate to say it, even people. I can tell someone I will call or text, and as many will attest, I don’t do what I say. And I hate to say, that is one of my biggest pet peeves, it is rude and inconsiderate, but yet I am so guilty of doing exactly that. I won’t use my health as an excuse, it is something I have accepted, I don’t like it but it has become who I am. I use to remember everything, I mean everything.

I have been become anti-social, I detest most public situations, because of the anxiety I feel. It isn’t a feeling of judgment, it is a feeling of fear and uncontrollable communication. I hear many conversations, including if I am trying to hold one, and I cannot process what is being said, because I can’t focus. I lose my thoughts in everyone else speaking. I forget what I am going to say or even completely go off subject. I will say something that has no correlation with what is happening around me.

The following is what the “description” what NDPH is from Wikipedia…

New daily persistent headache (NDPH) is a distinct primary headache syndrome which can mimic chronic migraine and chronic tension-type headache. The headache is daily and unremitting from very soon after onset (within 3 days at most), in a person who does not have a past history of a primary headache disorder. The pain can be intermittent, but lasts more than 3 months.

The striking feature of the condition is its abrupt onset. Patients often remember the date, circumstance and indeed, occasionally, the time of headache onset. One retrospective study stated that over 80% of patients could state the exact date their headache began.[1]

The syndrome is difficult to treat and may persist for years.

The cause of NDPH is unknown, and it may have more than one etiology. NDPH onset is usually in relation to an infection or flu-like illness, stressful life event, minor head trauma, and extra cranial surgery. Infection or flu-like illness and stressful life event are most often cited.[1] The pathophysiology of NDPH is poorly understood.

The age of onset ranges from 6 to greater than 70 years old, with a mean of 35 years. It is found to be more common in females in both the adult and pediatric populations. NDPH is rare. The Akershus study of chronic headache, a population based cross sectional study of 30,000 persons aged 30–44 years in Norway, found a one-year prevalence of 0.03 percent in the population.[2]

In 1986, Vanast was the first author to describe the new daily-persistent headache (NDPH) as a benign form of chronic daily headache (CDH).[3] The criteria for the diagnosis of NDPH were proposed in 1994 (the Silberstein–Lipton criteria)[4] but not included in the International Classification of Headache Disorders (ICHD) until 2004.

Contents

· 1 Signs and symptoms

· 2 Diagnosis

o 2.1 ICHD criteria

o 2.2 Criteria revision

· 3 Pathophysiology

· 4 Treatment

· 5 Prognosis

· 6 References

· 7 Further reading

Signs and symptoms

The headaches can vary greatly in their clinical presentation and duration.

Quality of the headache has been described as dull and/or pressure-like sensation, and throbbing and/or pulsating sensation. The pain is usually on both sides of the head (in 88%–93% of people with NDPH), but may be unilateral, and may be localized to any head region.[5] The pain can fluctuate in intensity and duration, is daily, and lasts more than 3 months.

There may be accompanying photophobia, photophobia, lightheadedness or mild nausea. Co-morbidity with mood disorders has been reported in a subset of patients.

Cranial autonomic nervous symptoms occur with painful exacerbations in 21%, and cutaneous allodynia may be present in 26%.[6]

In 2002, Li and Rozen[1] conducted a study of 56 patients at the Jefferson Headache Center in Philadelphia and published the following results:

· 82% of patients were able to pinpoint the exact day their headache started.

· 30% of the patients, the onset of the headache occurred in correlation with an infection or flu-like illness.

· 38% of the patients had a prior personal history of headache.

· 29% of the patients had a family history of headache.

· 68% reported nausea.

· 66% reported photophobia.

· 61% reported phonophobia.

· 55% reported lightheadedness.

Imaging and laboratory testing were unremarkable except for an unusually high number of patients who tested positive for a past Epstein-Barr virus infection.

Diagnosis

Although NPDH is classified as a primary headache syndrome, it must be remembered that a number of important conditions can present with a new-onset persisting headache, and these must be excluded prior to making a diagnosis of a primary headache disorder.

The diagnosis is one of excluding the many secondary types or NDPH mimics, which is especially critical early in the course of the disease when a secondary etiology is more likely. NDPH mimics include but are not limited to:

· neoplasms

· subarachnoid hemorrhage

· idiopathic intracranial hypertension

· temporal arteritis

· chronic subdural hematoma

· post-traumatic headaches

· sphenoid sinusitis

· hypertension

· spontaneous cerebrospinal fluid leak

· cervical artery dissections

· pseudo tumor cerebri without papilledema

· cerebral venous thrombosis

· Chiari malformation

· NDPH with medication overuse headache

Many doctors state that the condition is best viewed as a syndrome rather than a diagnosis.[7] Once a diagnosis of NDPH is made, clinicians argue that patients are best managed according to the more detailed pathophysiology-based diagnosis than lumped together into a single group, since a single disorder is unlikely to exist.

NDPH It is classified as a Primary Headache Disorder by the ICHD-2 classification system (by the IHS) using number 4.8. It is one of the types of primary headache syndromes that present as a chronic daily headache, which is a headache present for more than 15 days a month for more than 3 months.

ICHD criteria

The ICHD Diagnostic Criteria is:[8]

1. Headache that, within 3 days of onset, fulfils criteria B-D

2. Headache is present daily, and is unremitting, for > 3 months

3. At least two of the following pain characteristics:

1. bilateral location

2. pressing/tightening (non-pulsating) quality

3. mild or moderate intensity

4. not aggravated by routine physical activity such as walking or climbing

4. Both of the following:

1. no more than one of photophobia, phonophobia or mild nausea

2. neither moderate or severe nausea nor vomiting

5. Not attributed to another disorder

Notes:

1. Headache may be unremitting from the moment of onset or very rapidly build up to continuous and unremitting pain. Such onset or rapid development must be clearly recalled and unambiguously described by the patient. Otherwise it is coded as 2.3 Chronic tension-type headache.

2. History and physical and neurological examinations do not suggest any of the disorders listed in groups 5-12 (including 8.2 medication overuse headaches and its sub forms), or history and/or physical and/or neurological examinations do suggest such disorder but it is ruled out by appropriate investigations, or such disorder is present but headache does not occur for the first time in close temporal relation to the disorder.

Criteria revision

Although the original Silberstein–Lipton criteria and the original description by Vanast make no suggestion for the exclusion of migrainous features in NDPH, the current ICHD criteria exclude patients with migrainous features. When migraine features are present, classification thus becomes problematic.

It has been reported that migraine symptoms may be present in over 50% of NDPH patients.[9] The current criteria definition thus excludes more than half of patients with new onset of daily headache. This exclusion due to migrainous features could have adverse scientific, diagnostic, and treatment consequences.[10]

One proposal for reclassification of the criteria is from a study conducted on retrospective analysis of the records of 1348 patients regularly treated at the headache clinic of the Department of Neurology of Santa Casa de São Paulo, Brazil, and would be the following subdivision: NDPH with migraine features and without migraine features that would allow the inclusion of all individuals present who has a daily and persistent headache from the beginning.[11]

Another proposed reclassification of the criteria is from a study conducted as a retrospective chart review of patients seen at the Headache Center at Montefiore Medical Center in Bronx, New York, from September 2005 to April 2009. The revised criteria for NDPH definition does not exclude migraine features (NDPH-R), and three subdivisions were created and described based on prognosis: Persisting, remitting, and relapsing–remitting. Additionally, this revised criteria would not include parts C or D currently required by the ICHD diagnostic criteria for NDPH.[6]

Pathophysiology

The pathophysiology of NDPH is poorly understood. Research points to an immune-mediated, inflammatory process. Cervical joint hypermobility and defective internal jugular venous drainage have also been suggested as causes.[12][13]

In 1987, Vanast first suggested autoimmune disorder with a persistent viral trigger for CDH (now referred to as NDPH).[14] Post-infectious origins have been approximated to make up anywhere between 30-80% of NDPH patients in different studies. Viruses that have been implicated include Barr virus, Herpes simplex virus and cytomegalovirus.[15][16]

Non-specific upper respiratory infections including rhinitis and pharyngitis are most often cited by patients.[17] In one study, 46.5% patients recalled a specific trigger with a respiratory tract illness being the most common. In children, almost half report headache onset during an infection.

A study by Rozen and Swindan in 2007 found elevated levels of tumor necrosis factor alpha, a proinﬂammatory cytokine, in the cerebrospinal ﬂuid but not the blood of patients with NDPH, chronic migraine, and post-traumatic headaches suggesting inﬂammation as the cause of the headaches.[18]

NDPH as an inflammatory, post-infectious manifestation indicates a potentialmeningoencephalitis event in NDPH patients. Tissue specificity is a general feature of post-infectious, immune-mediated conditions, and the meningesare a type of connective tissue membrane. Inflammation of the meninges was first proposed as a possible pathophysiology for migraine in the 1960s and has recently been explored again.[19] This hypothesis is based on meningeal mast activation. Reactive arthritis (ReA) is a post-infectious disease entity of synovium/joints with connective tissue membrane (synovial membrane of the joints) which provides a corollary.

NDPH has been reported in Hashimoto's encephalopathy, an immune-mediated type of encephalitis.[20] A mean 5-year retrospective analysis of 53 patients with a history of viral meningitis and 17 patients with a history of bacterial meningitis showed an increased onset of subsequent new onset headache and increased severity of those with prior primary headaches.[21]

Treatment

As outlined by the ICHD, NDPH may take either of two sub forms: a self-limiting sub form which typically resolves without therapy within several months and a refractory sub form which is resistant to aggressive treatment programmes.

A number of medications have been used including: amitriptyline, propranolol, and topiramate.[22] There are no prospective placebo controlled trials of preventive treatment. In those with migrainous features treatment may be similar to migraines.[23]

Occipital nerve block have been anecdotally reported to be helpful for some patients with NDPH. 23/71 people had undergone a nerve block for their severe headache. The NDPH-ICHD group responded to the nerve block much more often (88.9%) than the NDPH with migraine features (42.9% responded to nerve block).[5]

Opiates, or narcotics, tend to be avoided because of their side effects, including the development of medication overuse headaches and potential for dependency. NDPH is often associated with medication overuse.[2] To avoid the development of medication overuse headaches, it is advised not to use pain relievers for more than nine days a month.

NDPH, like other primary headaches, has been linked to comorbid psychiatric conditions, mainly mood and anxiety and panic disorders. The spectrum of anxiety disorders, particularly panic disorder, should be considered in NDPH patients presenting with psychiatric symptoms. Simultaneous treatment of both disorders may lead to good outcomes.[24]

Prognosis

Early history is a key to diagnosing NDPH. Evaluations to exclude secondary causes are necessary but usually negative.

Most patients have persistent headaches, although about 15% will remit, and 8% will have a relapsing-remitting type.[9] It is not infrequent for NDPH to be an intractable headache disorder that is unresponsive to standard headache therapies.

NDPH is difficult to treat and requires a multimodal approach. Questions regarding NDPH remain unanswered. Additional prospective studies are necessary to further understand, characterize, diagnose, and treat NDPH.

(References

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2. ^ Jump up to:a b Grande, RB; Aaseth, K; Lundqvist, C; Russell, MB (2009). "Prevalence of new daily persistent headache in the general population. The Akershus study of chronic headache". Cephalalgia 29 (11): 1149–55.doi:10.1111/j.1468-2982.2009.01842.x. PMID 19830882.

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