So, what about the book?

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As my long time readers know, I’ve been working on a book about NDPH for a few years now. And by “working” I mostly meaning “sitting” on it, waiting for the time and energy that only ever arrives in spurts. At this moment, I have almost completed a rough (very rough) draft of the book. I have a few things that I need to work out as far as the organization and there are a few areas that I would like to cover that I have yet to address.

The working title for the book is  Living with NDPH: My Story and Yours. It begins with my story and goes on to share the stories that I have collected from readers here over the past 3 years. I’m including a section on Lyme Disease, alternative treatments that have “cured” or significantly helped people and an appendix containing a list of doctors recommended by readers here. I hope to include a few additional resources.

Now, I have a question for you! What do you want to see in the book? What would help you most (aside from a cure)?

I am still accepting stories to be included. I have many, many that recount treatments and medication choices. What I would really love to see more of at this point is the other side  – how have you dealt with this illness emotionally? How has it impacted your mental health? What helps you get through the day? What do you wish the people around you would do to support you? Are you able to maintain your life in anyway (work, family, social).  I am also looking for first hand accounts from teens suffering with NDPH and their parents. These stories don’t have to be long and involved or even complete. If you have something you want to say, I can find a way to include it!

Please leave your suggestions or stories in the comments section or email them directly to me at alandisman (at) gmail (dot) com.

I haven’t set a publication date yet, but I hope to soon. As always, working revolves around my pain levels and the current needs of my three daughters. I’ll keep you updated! Thank you all for your continued interest and support.


Comments

So, what about the book? — 14 Comments

  1. Hi Amy, u r doing a heroic effort. I have read that it takes about 7years for a fully functioning team to put out a non-fiction book. No one but us NDPH people can understand the level of dedication that u have to even attempt a book. I have similar goals to use my big data specialty to help researchers develop better buckets for NDPH so that a cure for some might be more easily found. At the end of a work day, I barely have the energy to walk my dog and send out a couple of emails to researchers. And I have been working on this for 2 years. People that don’t have NDPH a can’t imagine the daily battle that we go thu to just get up and work a job to support ourselves. Prior to NDPH, I was a young high performing executive who was in the office early and turned off the lights when I left. My whole point is that 3 years would be pretty good even if u didn’t have NDPH but with NDPH it is a superhero effort. It is really inspiring. Congrats to you to have made it this far.
    I will try to review ur questions and make suggestions but I can’t promise when…..

    Best Wishes,
    Bob
    Bob.herman@me.com

    • Thank you so much, Bob! It is definitely hard to sit down and try to accomplish something at the end of the day, especially when you have pushing through the pain since you woke up. I hope that you will be able to manage to work on your project soon. It sounds interesting – and anything that could possibly help reduce suffering is definitely worth the effort. Thank you again.

  2. I am the mother of a teenage daughter diagnosed with NDPH when she was 14 at the Mayo Clinic. They all but promised us that she would be done with this in two years (because she is still growing) but said that if my husband or I were to get it we’d have it forever. It’ll be 5 years December 28th. She had all the tests, all the treatments, and attempted a year away at college but didn’t last the semester. Mostly it was because access to her medication was denied. The Federal Drug Free Act prohibits college campuses from allowing drugs like Marinol (synthetic marijuana) to be used on campus. However, she could be prescribed Vicodin by the doctor at the campus health center and pick that up at the campus pharmacy–go figure! And we live in Illinois and she went to a school in Michigan and both states are medical marijuana states! It saddens me to the point that I had a complete breakdown in September because my daughter has been robbed of her childhood by this condition. It is so unfair and although I am sure I am preaching to the choir–I’d much rather it was me than her. She has been told and has found that smoking or ingesting marijuana will hit more pain receptors and for her it does. She is able to be pain free after smoking pot. However, in Illinois there is a list of illnesses that it can be prescribed for, and chronic headache is not on the list. I am about to send her to live with her sister who is 32 and lives in Denver, because then this would not even be an issue. Emotionally I would say that my daughter is by far a much stronger person, but she also feels things emotionally much more deeply than others. A disappointment for her is much greater than someone without NDPH. I recognize this more than others do. She had a horrific high school experience because she gained then lost weight because of treatments and medications and she was bullied about both–skinny and fat. Because no one can see her illness then the “you’re faking it” issue came up a lot. She did have a very supportive school counselor and principal, a few teachers, but the overall experience was a negative one. We really hoped that getting her out of this environment and into another, more healthy one would make the headache better or disappear completely. I find it easier to wish for that than to face the awful truth–that it probably won’t ever go away. I do wonder if you felt better headache wise while you were pregnant? I have a friend with Fibromyalgia and her symptoms all but disappeared then and she was able to eat things that she couldn’t before–like cheese. I know it’s not the same thing, but was just curious if that happened for you? We see Merle Diamond at the Diamond Headache Clinic in Chicago, Illinois. We love her because she is the only one who really seems to understand how my daughter feels. We will discuss the marijuana use with her and see if she can come off some of her other medicines like the muscle relaxers she takes to sleep. She has a job at a Video store and she doesn’t work that often. She likes the job, however, and so that is a good thing. I am thinking she may only be able to do one thing at a time–work or school–but am hoping she will be able to either do online classes or, attend a few classes a semester rather than be a full time student. She is very talented in Art and writing. She has a blog and it impresses me to know end her ability to express herself. And she has always known what she needs medication wise. She consented to Botox treatments but said from the start since she doesn’t have a migraine then it will not help–and it did not. Maybe it’s because it happened right after Christmas, or maybe it’s just an overall sadness towards her condition, but this year feels especially hard for me anyway. Perhaps it was because I was an empty nester for the first time since I was 18 and I was feeling as though my care giving was still needed. I am happy she is home, but she is not well. We go to the clinic Dec 16th, as always, hoping for something new or better to emerge. Thank you for letting me express myself here. The NDPH affects everyone in the family as I am sure any chronic illness does, but it’s only been recently that others in our family have come to recognize this fact. I as her mother have known it for a long time.

    • Thank you for sharing your daughter’s story (and your own). These stories are so hard for me to hear. Your daughter is so young and it is so unfair. As a mom, my heart breaks for you. It’s so hard to feel helpless and that is how we often feel as patients, but I’m guessing you feel that way often too.
      I often thought that the stress of my life was causing the headache, but over time I realized that although stress may make things a little worse, it was definitely not the cause. I know that hope though, that all the pain will go away IF…
      I haven’t heard much about the use of medical marijuana for NDPH. I’m hoping others will chime regarding this. I hope that she can find some relief soon.

      I will add Merle Diamond to the list of recommended doctors in the book.

  3. Heya Amy, I love that your writing a book and I’m looking forward to reading it:)
    I’m a 22 year old girl and I’ve been suffering with NDPH since march 2012 and in December 2012 I was also told I had TMJ caused by the strain of having ndph. It’s not just the pain your sufferering with it’s the emotional and mental side to it that’s difficult to not let it take over you. I feel that my emotions are always on the surface since having this and the smallest things can make me can tip me over the edge, but i always remind myself that I’m a much stronger person to what I was and I never thought I would be able to cope with it as good as I have. The only option you have is to just live with it. For that you need a lot of support, my family are amazing but a massive majority of my friends have left me. And that in it’s self is hard to deal with. I feel like a nuisance to everyone, im restricted to what i can do and I feel like a boring person. I take life a lot more seriously and I feel like I’ve lost the bubbly outgoing person that I’ve always been.
    Every treatment I’ve had has never given me any relief I’ve tried everything I could get, medication made me hit rock bottom. Then a friend suggested cannabis and I can honestly say it saved my life. It’s the only relief from my pain that I get, without it I would have lost my job and more friends. I smoke it every night, as well as helping my pain it also chills me out and I feel emotionally it makes me stronger. I’ve heard that eating it can also help so I’m working towards that:) it’s not legal over here in the uk so it’s very hard to get. Thankfully America has seen the light and is finally lifting the ban on cannabis, I’m hoping one day it will come over here.
    It saddens me to know that there are people suffering with NDPH that’s younger than me, it’s ruined enough of my life at my age and it would only be worse for younger people.
    I’m very bitter towards ‘healthy’ people, I’ve felt like this for about a year and a half. I’m a hairdresser so I constantly have people moaning about trivial things and I feel like saying try spending a day in my shoes. I Havnt told a lot of people about what I have and the majority of my clients still don’t know, I don’t want people associating it with me but the problem with ndph is that no one can see it, people think your faking it and not many people have sympathy for you. Maybe the longer I go on the less bitter I will be?
    I’m now changing my whole diet, processed food is the cause of most illnesses so I’m trying to get rid of any bad stuff by eating more alkaline foods. If I get any joy with this I will let you know:) have you spoken to anyone that’s tried this with success?
    Hopefully one day we will find a cure that helps all of us it will be the best day ever! I hope someone will read this and try cannabis and will get some relief:) very much looking forward to your book, your doing a wonderful thing:)
    Thank you
    Kelly

    • Hi Kelly,
      Thank you for sharing your story. I’m glad that you have found a way to get some relief! Would you say that it actually reduces the head pain, or does it help you relax and cope? I do a similar thing on high pain days…I’ll take an Ativan at the end of the day so I can relax. It’s effective for me, but probably not ideal since it’s addictive. I don’t think it changes the pain, it just changes the way I’m dealing with it, if that makes any sense.
      I have had some success with diet changes. IF (and that’s a big if!) I can manage to eat all unprocessed food, no sugar, and lots alkaline veggies and fruits I do feel much better. I followed the “Eat to Live” plan and it reduced my pain quite a bit, but it’s hard for me to stay on long term. I’m trying to get myself back on it now. Also, I find that yoga helps me immensely. I’m working on a post today about how it has helped, and will share it soon.

      And I HATE it when people whine about stupid little things! I totally get that. It’s very difficult to listen without wanting to smack someone. I think it’s something we all get accustomed to over time.

      Thank you again for sharing. I will definitely use your story for the book. I think I may need to add a section on medicinal marijuana as a pain management strategy. Keep me updated on how the diet is going for you! 🙂

      • Cannabis definetly reduces my pain for 1-3 hours Depending on how good of a batch it is. As well as the pain it helps me emotionally meaning helping me to cope. I think somehow it gives me strength and making me less angry with the world. Is that what you mean how you feel after taking Ativan? It’s hard to explain how it helps, it just does thank god!
        Amazing to hear you had a good outcome to eating differently, it’s very hard to keep too, maybe writing a diary and slowly introducing ‘bad’ foods to see what makes you worse would be good. That’s what I’ll be doing but I’ll get Christmas out of the way first, I can’t turn down sugar this month! Looking forward to hearing about your yoga:)

  4. Wow, Kelly that is what I am doing right now. My life has done a drastic change of coarse. I am getting off of all 4 medications and changing my diet. It is rough doing it, no sugar, no salt, no beef, no dairy, no chicken (eggs only) and no yeast, no gluten, no vinegar, and not a comfort food that you are use to. I quit smoking Jan 19th last year coming in from just having one. I hit the floor in the fetal position, my head was at a 14/10. From that point on, No way not a 1 ! But as far as Cannabis goes, Kelly’s right. It does help the pain a bit and ya it gets you mind off of the monotony of the headaches once in a while. Going for the headache abortive drugs, and making you feel like crap for the next 2 days, is not the way to go for me.

    So Amy, a suggestion would have to be “what about your diet”. Not being on a diet just to shed some pounds. But regulate the things that we put into the machine to make it run. “If we put in diesel into a Lamborghini, it sure would not run to well.” That’s what we are doing. Reading the labels is one thing, knowing what to eat to help is another. So we have to start looking into what we put in and what it does to our body. And maybe there is a solution in there somewhere to get rid of the NDPH. Because Drugs is only a band aid to the real problem.

    • Aw I’m So happy you get relief from cannabis. Isit just smoking it you have tried? Are you in America or the uk? They’re making cannabis oil over in America which would be perfect, the only thing with smoking is the tobacco. So taking liquid form would be bliss. And how is your diet going? I’m two weeks into mine now. I’m still struggling, I feel like I’m constantly hungry. And I feel no different to what I did, pain wise. It’s very hard to carry on with it if your not seeing progress but I’ve got to try it for at least a month (takes a month for sugar to leave your body) so hopefully in another two weeks I’ll be writing another post on here saying I’m better:) from my experience I would tell everyone to come off any medication because it makes you feel 100 times worse. Theyre poison and they are only giving us more problems than fixing them. Like you said medication is a mask for pain and it doesn’t get rid of it. I’m starting up my own fruit and veg shop aswell, whenever I’m workin on that I find I forget about my head, I’d suggest everyone finding their passions and getting into a job that you will love and enjoy because mood also affects the pain and if your not happy in work how are you going to be happy outside of work? It’s hard pushing yourself everyday but the end result is always worth it! X

      • Hi Kelly
        U prob may not get this message but I really hope u do. Long story short I was on MD junction one day as I had been suffering from headaches for the past 9mnths my first time on the website and i found a post u had put up mentioning a medication u had taken and how u recommend Dr mark Weatheral and all that stuff and I literally found the courage and money obviously to go and see him and he’s ok really I was hoping for miracles I guess but that didn’t happen and u mentioned some medication that had helped u and I wrote it down and sadly I have lost it.
        Well I wanted to know how u were getting on and to say that changing ur diet makes such a great improvement researched and found that protein is so hard for us to disgest and like u I am on a vegan diet no sugar either and I helps so much.
        Pls can u let me know how u r getting on I have been prescribed some sort of medicine by Dr Weatheral but honestly I’m don’t think it will help really but hey let’s try.
        I’m in London and would love to know ur new fruit and veg place so I hope this message gets to u and I hope u are doing well

  5. Hi Kelly, thats awesome that you put love into what ever you do. My dad told me when I first joined the work force that if you do what you enjoy, and love to do. Your days will go by faster, you will want to be at work and you will probably will do a better job at it. I have lived by this all my adult life. The diet is hell Kelly!! Like Amy said you have to be strong, but like my wife keeps telling me (she’d doing it as well for support)” would you rather have headaches or eat the kale”… there is an up side to this diet besides trying to get some relief , I will loose the lbs that I gained while on the MEDS. Since high school I have been the same weight. But now with no sports in my life because of the NDPH, I have gained 35 lbs over the course of 1 year. The “Eat to live” I guess is not a diet per say, its a change in thinking and life style. Breathing exercises and relaxation techniques to help with the serotonin levels helps sometimes but other times it actually increases the pain.

    I Live in Canada so yes I have heard of the oil and with the oil you can put it into a vaporizer so less smoke and no tobacco. I think the hardest part of all is keeping focussed and staying positive with out taking it out on family or friends. With the withdrawals from the meds, the daily up and down of my 3 different types of headaches, and trying to keep my emotions in check, is hard. I am also hoping that with the meds out of my system my memory will return. I have these supplements that are suppose to help with memory but I keep forgetting to take them, lol!! Just a little humour 🙂

    Reading about all these people that have had NDPH for 20 some odd years, it scares the hell out of me! I now know that there isn’t a cure, and I have accepted the fact that I will probably have this for the rest of my life. Up to now I have not been a headache sufferer, other than self induced. Living in a place where Chinooks are common in the winter I hear people talk about ” oh no there’s a Chinook comin tomorrow I’m not got going to be good tomorrow” and never truly understood how much pain they were in until now.

    NDPH is a vicious circle, you take a pill to get relief and you get a rebound headache. You exercise to help with the headaches, your headache increases. You take daily meds to help with the severity of the daily headaches and they are doing more harm than the headaches are doing. It’s almost like quicksand.

    Anywho, this is a great bunch of people that I have found, and thank you all for your stories, thought, and tears.

    Stay strong,
    Shayne

    • Hi everyone!! I have the best news for you all!! Back in February ( I havnt been on here because I didn’t want to give anyone false hope) I went to see a nateopath in Wales UK where I live. Now your going to be sceptical because I was at first but this lady took a strand of my hair and she could see everything that was wrong with my body. She told me my body was full of a bacterial infection, as soon as she told me things made sense, everything you do it makes it worse, nothing relieves it, it’s always there. Certain parts of my body was so bad because the infection had spread that she explained that my body wasn’t taking any of the nutrients in. She give me a list of natural supplements told me as you know to do the raw diet, no sugar gluten dairy meat nothing packaged told me to stay away from certain foods that she could tell my body didn’t want and 3 months on and oh my god am I better!! I’ve just had a horrific cold (which she explained was my body throwing out the infection) she said I won’t be in pain forever and she’s going to get me better. And I believe it, I’m a completely ndofferent person, I’m back to who I was I’m belly laughing again, I’m messing around and joking (something that I havnt done in years) and I’ve actually woken up today with hardly any pain at all!! It’s about a 1 on the pain score. It’s the best feeling ever! And it’s been the easiest thing ever changing the diet. I’m a brilliant cook now so every meal is beautiful, a few weeks ago she put me on fish, so I’m not complaining. And if it gets rid of the pain I would only eat an apple for the rest of my life if I had too… Hard work pays off! You all need to do it!! Here’s the woman’s email if you want to email her (you can send off your hair in the post) I’m so happy everyone:) I want to run!! But I won’t just in case hah. clinic@osteopathplus.com 01792 462 001. The cure is out there guys!!! And it’s nature!!! You WILL be pain free if you do the work… Any questions obviously I’m more than happy to answer but email this woman! Make it the first thing you do today:) (pharmaceutical companies want money, nature doesn’t, it just heals you:)) don’t listen to doctors you can all do it:) xx

        • Heya Sarah!
          Well guys I’m still brilliant!:) my head isn’t no where as bad as it used to be. Pain had taken its toll on my body though so I’m struggling with that at the moment, havnt long started yoga and I’m getting relief out of that too!
          I’ve cut out sugar, gluten any processed packet food. I did cut out dairy but I’m able to have goats cheese and butter now. Which makes things a lot easier. I’ve become a vegetarian. Something I never thought would do. But I’m feeling fantastic! I only ever eat fruit and veg, pulses,beans,lentils,no grains, get yourself a sprializer!! Makes life a lot easier and faster.
          Honestly guys, come off your meds and change your diet. People are saying it’s hard and you have to be strong, how long have we been strong trying to hide the fact we had this terrible illness? Well changing your diet is a lot easier than that. So if you want to get better follow a vegetarian paleo diet. But having your hair tested for allergies would be a good idea. But in the end you can listen to your body and know what doesn’t agree with it or not:D I would love to hear from you all and how your getting on. My fruit and veg shop has taking off massively and were actually up sizing in the next few months! If your on Facebook look up ‘the green grocers pontardawe’ and that’s our page! I put up some interesting facts and recipes 🙂
          Much love health and happiness to you all xx

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