An Honest Look at NDPH and Lyme

The game of let’s pretend started early.

Back when I was first diagnosed with NDPH (8.5 years ago), my doctor was so lighthearted and optimistic that I walked out of his office thinking I was just a few pills away from relief. Pure fantasy.

Six years later, I was diagnosed with Lyme, and all I received was a phone call from the office nurse letting me know that I needed to pick up my prescription and take my meds for the next few weeks and all would be just fine. Science fiction.

honest about lyme

Both doctors (and many others along the way) have been dishonest with me. They left out some very important information about both diagnoses. It wasn’t until much later that a neurologist told me the truth: sometimes NDPH never goes away. And sometimes it does. I wasn’t until I did my own research that I discovered that when Lyme isn’t treated immediately and aggressively that a person may have to continue fighting some symptoms forever.

I’ve been quiet  here for a while now. I haven’t been sharing my journey, mostly because I haven’t had any desire whatsoever to take a honest look at how I’m feeling.

It’s been 3 years since my Lyme diagnosis. At this moment, my head hurts like hell. I can’t keep track of how bad I’ve been feeling  because my brain is cloudy and forgetful all the time.  I’m exhausted. And if I were to let myself go there (which I won’t) I could be absolutely hopeless.

I have no idea what to do next. I was better for a time, but slowly it all came back.

I know that I am lucky. The simple fact that I’ve had a break from the pain at all makes me lucky. I know many or most of you have not had that much needed break, but having it, getting your life back only to have it slowly slip away again…

It’s hard too.

I have nothing to say about treatment options. I have no idea what I will do next.

I’m not giving up. I’m trying to be optimistic. But I also have to stop pretending that I’m just fine, even if the only place I can admit that I am a total mess is here, on the blog.

Time and pain have both taught me to keep quiet and pretend that all is well. To the rest of the world, I’m going about my business. I’m getting ready for the holidays, I’m buying Christmas presents for my girls. I get up in the morning and push through the day and no one is really the wiser.

I don’t want to be that person who can’t manage work or social events because of pain (but I am). I don’t want people to know how hard it is. I don’t want to deal with their looks of sympathy before they turn away.

So now you know.

I’m still struggling to keep the pain from impacting my life. And it feels like I’m loosing the battle. I wonder, if I stop pretending that I’m okay, will things get worse?

Do you pretend that NDPH  is just a bump in the road? A minor inconvenience? Or are you totally honest with yourself and others?


Comments

An Honest Look at NDPH and Lyme — 23 Comments

  1. somehow i got on your email list for NDPH. i don’t know if i ‘officially’ have this; i have had severe migraines for 44 years. they have gradually morphed into daily head pain. so it’s not exactly NEW……

    my memory isn’t so terrific anymore, and that’s why i can’t recall just how i put myself on your list. but i’m glad i did. i guess i thought “that’s one diagnosis i’ve never been given”, and maybe that’s “it”!

    i’ve been through the gamut of doctors and treatments for all these years, and i am now 73 years old, and working 30 hours/week. of course, i don’t have much of a life, otherwise; i am too pooped to do much after working a long day. that’s why i am cutting it down to 22 hours/week as of tomorrow. i do home care of elderly/disabled, and it’s usually not very demanding, but one must get out of bed and BE THERE, which is hard most days
    .
    someone mentioned trepidation about removal of wisdom teeth for her daughter. could you, amy, kindly steer her to think about not putting her child through this surgery? i believe my problems started when i had 6 surgeries as a teenager, to correct some birth defects in my mouth and nose. the last one was at age 22, which was the wisdom teeth, all 4 at once.
    there is a lot of medical nonsense out there in google-land, but also some valid info about keeping the wisdom teeth. my unscientific theory is that any messing around that close to the brain is likely to cause big problems later in SOME PEOPLE. i was one……..lucky me.

    i have also been diagnosed with the nebulous “lyme” label. no one knows if i really do have long-term lyme, but i have been treated for it, and did not improve.

    life is interesting, and i enjoy mine, in spite of the pain. i do have drugs which help, which i must take almost daily. (the triptan family of migraine drugs; daily is NOT recommended, but i have nothing else).

    i’ve tried botox for the second time (the first time was 14 years ago, when it was very new, and done by a neurologist who had little experience). this time, just 2 weeks ago, i believe i can say it is helping! certainly not dramatically, but every little bit is valuable. dianne

    • I’m glad you found your way to my email list, however it happened. 🙂 You’ve given me a lot to think about. I also had all 4 wisdom teeth removed at one time, as well as 5 years worth of othordontics as a teenager. I know that I read somewhere (who can remember?!) that messing around with the small palate can misalign the bones of the skull (such as the spheniod) and therefore cause chronic head pain. I think that is what cranio-sacral therapy aims to correct, and I know some people have had great success with it.

      I’m glad you are able to cope and enjoy your life in the midst of all the pain. And keep us up to date about the botox! I hope it continues to help…that is one thing I haven’t tried yet.

  2. Hi Amy and others…thanks for your honesty. I have commented on this blog before. Like you, Amy, I am the mother of 3. December 2nd will mark my 40th birthday and December 7th will mark my 4th anniversary with NDPH (but 5th Christmas.) I remember thinking & praying when this all happened that the headache would be gone by Christmas…then it was Easter…then it was soon…then it was my 40th Birthday. But alas it is still here.

    I am NOT honest with myself and others (unless the normal pain turns into a migraine. oh, I feel for you Migraine sufferers!) Most people don’t know what I struggle with and when they find out they are completely amazed that I look great and can do so much. I firmly believe we can not let our circumstances run our lives, but I also do believe that if we stop pretending we will get worse. I thank God for my children. They force me to function. If I didn’t have them there would be many depressed days in bed. Sometimes my pride gets in the way and I think that I am pretty amazing that I can do all that I can, but really it is by the grace of God and through the supernatural power of the Holy Spirit that I can function. I refuse to take any pain-related meds for it any more. Took Topamax for awhile and it made me so stupid. It is truly a mystery as to how we function. I can not do it all alone. So on one hand I think we need to pretend and the other hand, I think our stories need to be told. I’d love to see an article in the Wall Street Journal on NDPH.

    That said…I am going on my 2.5 year mark for being diagnosed with Lyme. After spending probably upwards of 20K, the Lyme is mostly gone but the headache is still there. Overall I am loads better. I think that some increases in headache, brain fog and fatigue are due to Candida and yeast as a result of all the antibiotics. Additionally, I recently had an HLA DR test done to check for Biotoxin issues (check out Dr. Shoemaker and survivingmold.com). Apparently, I have bad genes and what is called multi-susceptibility which makes it difficult for my body to rid of the toxins caused by the Lyme die-off as well as easily rid of other bacteria, mold, viruses, etc. Therefore, there are biotoxins circulating in my system causing symptoms not necessarily Lyme. This could be your case as well, Amy, along with the fact that we didn’t get treated for Lyme right away. I once read that perhaps the bacteria or viruses got into our brain barrier and left like a sun burn on the barrier. For me this often feels like the case as my head burns. So we are currently trying to boost my immune system and use various supplements, etc. to help flush these toxins out.

    I get frustrated sometimes as I wonder if the headache will ever go away and am I wasting my money? But if it was cancer, wouldn’t you do everything in your power to fight it and stay healthy? For now, that’s the track I’m on…continuing to search and fight. I thank God that I have such a wonderful spouse that supports me and provides funds to plug forward.

    In the meantime, I hold on to the truth that God has a plan and continue to pray/beg/plead for a cure! Don’t give up hope…

    • We have so much in common, Michelle. And I have to say that I think you are right – if we stop pretending completely, it could all become a bit intolerable. My kids are why I get out of bed in the morning and try to keep together all day.

      Thank you for sharing the info about the biotoxins. I was not aware that this was a possibility. I thought that when I feel like I’m having a lyme relapse, that it was the disease becoming active in my system again. I know that doctors have mixed opinions over whether or not this is even possible, but I have not yet found another alternative to going back on antibiotics. I will definitely look into this.

      Thank you for the much needed encouragement. 🙂

      • I’m in the process of seeing a lyme literate doctor here in Cali because I have had a persistant headache since may 20 2013 . I also traced it down to some type of tick bite because A positive for lyme in a test done by my pcp. I’m now seeing a lyme literate doctor mind you i seen a neuro in my home town of Modesto, and dr raskin @ ucsf . I truly believe it’s the lyme or a co infection caused from the tick bite . (I had bullseye mark) . I’m on AB now for the lyme and will keep u posted . From what I understand the headaches are caused from the lyme or confection and long term AB is many times necessary. A lyme literate doctor could provide with greater insight to lyme/ co infection / tick born disease much greater than your standard physician / pcp .ill keep u guys posted . Fingers crossed .
        Here’s a link on detoxing from lyme …..
        http://www.tiredoflyme.com/detoxing.html#.UmiIP_q9LCQ

  3. I have read this post over and over again in the last couple days…I wanted to comment but I seemed to be at a loss for words and I am now as well, but at the same time, I relate to everything you have said…My thoughts are all over the place as usual…always in a brain fog…my headaches started December 6, 1994…and still going strong…every single day…there are people who have no clue what I go through and then there are the people closest to me who think they know what is going on with me…and also the ones who think they know better than me…I try to keep going every day no matter how I feel…it has to be really bad before I slow down but sometimes I resent that nobody ever says, ” slow down, it’s ok…we got it”…in reality, they don’t have a clue what it’s like and that’s why I pretend I’m okay most of the time…I get frustrated and angry at times but I thank God for helping me through this…and I will continue to pray for his help…a cure? After 19 years, I try not to think too much about that…

    It’s Christmas again…and I love Christmas, but at the same time, it is so hard to give everybody the Christmas they expect…big Christmas Eve party at my house and company usually stays for over a week…the months following December are always really tough…I guess the stress makes my cup runneth over…if only?????

    Well, I’ve babbled long enough…I feel for you and pray for many blessings to come…even if the headaches seem to be here for good…

  4. Thank you for commenting Debbie. What you said – “I slow down but sometimes I resent that nobody ever says, ” slow down, it’s ok…we got it”…” I think I hope for that a lot and resent that it never happens.
    I’m close to tears now, reading these comments, because I forget that I am not the only one going through this (even if it feels like it). Thank you again. 🙂

  5. Hi Amy, thank you for sharing your experience and for this blog – I am new to ‘blogging’ but found your page when I was looking for some support. I have just recently been diagnosed with NDPH – so I am new to this and to the pain, as well. My headaches started in August of this year and to me it feels like I have been suffering for an eternity – but when I read the experiences of others here – it is really no time at all. What has astounded me is how your life can be turned upside down – in the blink of an eye. I’m 36, live in Scotland, I’m married with two children (5 and 8 yrs old). I am a part-time primary school teacher. Up until this started I was always so very busy and sociable; doing exercise classes and parent council fundraising activities for my kids school…. Now I have lost my energy, my enthusiasm, some of my friends… I am off work. My head hurts almost all of the time – I was in hospital for nine days in September and whilst I was in CT and MRI scans showed a cyst on the pineal gland in my brain and my blood pressure was spiking, seemingly for no reason. A neurosurgeon has said that the cyst is not causing the problem and a neurologist has diagnosed NDPH. I have numbness in my left side – predominantly in my left arm and hand but sometimes stretching down into my leg and foot. I am tired most of the time. Sometimes dizzy. Sometimes sick. Dr’s have prescribed five different medications to take everyday. I am at the stage where I am trying to just pretend none of this is happening and I really want to get back to work and to doing all the things which I loved to do before…. If only it were that simple. I think the medications are working to an extent – I am getting glimpses of normality here and there and then the pain comes back and takes hold again. At least here – I feel like I’m talking to someone who has experienced (or maybe that should be – is experiencing) the loss you feel when all the simple things you take for granted are put on a shelf that feels too high to reach. Thank you again – I do feel a wee bit like I have cheek to moan hear when it’s only been a matter of months in relation to the time you have suffered.
    Here’s hoping for some comfort, gillian x

  6. I understand how you feel, the emotional stress we put ourselves under when dealing with this stupid headache is crazy. It’s hard to try and keep on the happy face when all you want to do is tell everyone to go away because your head is killing you.

    Once you let go of the fact that you have to look out for what’s best for you it’s very liberating. That additional stress on your shoulders of trying to hide the pain to please others just goes away. Not to say that emotionally it’s easier on you but it does improve your overall health with less stress. It gets easier, but you have to ask others for help and keep asking. Everyone in your life will usually help to pick up the pieces when you can’t deal with them. As a woman we tend to put ourselves last in the wellness column. This crazy headache that we have does make us put ourselves first since the pain is overwhelming at times. We all have our good days and our bad, but only we know what we can handle.

    I was diagnosed August of 2012. I have basically been off work since April 26, 2012 when all of this started. I was a manager and photographer of a small portrait studio at the time along with being a wife and mother of a 6th grader. I did try to go back to work last Christmas season as just part time 10 hours a week, but that didn’t work out so well. I have days that I can’t drive because it’s effected my vision. The pain is always there. The pain scale as come to mean this is what I can do today not how bad I’m hurting. I was lucky to have been diagnosed as quickly as i was. It was only 3 1/2 months before the diagnoses and only 3 doctors. Since then the treatments have varied from pills to botox. That last one really REALLY hurts by the way, 31 injections every three months sucks. I’ve had two rounds. After the first i actually improved physically. I was able to do more house work and drive again. This second round not so much. I’ve actually gone backwards.

    I’m sure you have had setbacks also like this. Just be honest with everyone and if they don’t believe you have them over when you have a really bad day and let them see. It’s the only thing that I’ve found that actually works on making people understand a little of what we go through.

    Good luck and hopefully have some lasting relief soon.

  7. Amy I am sorry to hear you are in pain again. About 2 years ago I read your blog while searching for something to help my husband with constant daily headaches. Only because of you did we consider Lyme disease. After about 3 negative tests he finally tested positive for Lyme and Babesia. We have been to about 3 doctors for treatment but finally feel we are making headway with a Dr in San Diego. She is so knowledgeable about so many things. I know there are some very dedicated and well know doctors on the East Coast too. We have tried many herbal “antibiotics” along with the pharmaceuticals. I think they help and can be maintained for long periods of time with worrying about causing more candida. I wish you the best and feel free to lean on all of us. I can’t thank you enough for leading us in the right direction.

  8. I’ve been reading your blog, looking for answers for my 15 year daughter and I seem to read that many of you feel there is strong link between NDPH and Lymes. My daughter woke up 1 year ago this week with such a severe headache that she stayed in bed for 3 weeks before the pediatric neurologist put her in the hospital for 5 days. She was given DHE IV treatment in the hospital, which caused her veins to infiltrate. The pain in her veins was almost as bad as her headaches. After trying many different prescription meds, as well as, supplements and vitamins nothing seems to work. She has some days that are better than others but the pain never goes away. Did most of the people on here with Lyme’s get it before or after the headaches started? My daughter was told she had Lyme’s 5 months before the headaches started. After talking antibiotics for 4 days, the doctor called and said it was NOT Lyme’s. So we stopped the antibiotics. Did your doctor blow off the possible connection? She is an over achiever stressing out over her school work and really struggles during the day at school. She does see a chiropractor on a regular basis, which does help a little. We are actually starting physical therapy with dry needling today. I would do just about anything to take her pain away. I hate listening to her cry herself to sleep some nights. I, like most of you, am just looking for some answers and not finding any. I appreciate all the comments and encouragement I’ve read on your blog. Thank you for sharing.

    • Hi Jill,

      I would insist on having her tested again for Lyme, just in case. Initially, my only symptoms were a headache and some leg pain. Every single doctor dismissed Lyme as a possibility for 6 years. Finally, I tested positive for a coinfection of Lyme. I have heard from many people that their NDPH was caused by lyme, so although your doctor may dismiss it, it is a possibility!
      I’m so sorry your daughter is going through this. If you have any other questions, please ask. I hope she finds some relief from her pain soon.
      Amy

  9. Hi Amy. Thanks for sharing your experience in this blog. My husband has had an unrelenting headache for the last 8 years. He can name the day and time that it started. He has had 17 procedures and gone through 20 doctors (including Mayo Clinic) trying to find a solution. He has had to quit a job he loved and has a hard time participating in hobbies he used to enjoy. None of his doctors has every mentioned the possibility of Lyme disease. It sounds like after this length of time that knowledge may not be helpful. My husband amazes me as does everyone that struggles with condition. I pray for him and all of you.

    • I was 6 years into the headache before I started treatment for Lyme, so if it is a possibility for your husband, it is worth checking out! My pain is less than it was -though I still have trouble sometimes. I am able to function much better these days. I hope he finds relief soon.

    • Please don’t rest until you find a cause. My husband also suffered continuous headaches until we discovered he had Lyme. That was 3 years ago. We also went to Mayo Clinic’s top headache doctors. No one suggested Lyme. The first 4 tests were negative until a doctor know how to “coax” the Lyme out and we got a positive Lyme and Babesia test. My husband also quit his job so I am the sole breadwinner. Best wishes to you and don’t let him give up.

  10. Thanks for your reply, Connie. How is your husband doing now? What type of doctor was able to “coax” the Lyme out on the testing? Is there anything we should mention to the doctor?

  11. Hi, I have suffered with constant headaches for nearly 4 years. Yes, the start date is imbedded in my brain! People’s responses vary & I can identify with those who feel misunderstood, folks think they may just be making it up, depression, & more! But I also have those who loyally stand with me, perhaps listen for the 100th time!, pray, care…God bless them!! I’ve had numerous things done both medically & naturally & even had surgery. Currently I’m on a special candida cleanse the like of which is incomparable to any I have done before. It is too soon to tell yet what the outcome will be but I have experienced quite a bit of die-off which is exciting because of what that could mean for good in the end. I also worked with a program in which I tested positive for bartonella & after @ 2 years of trying to get rid of it they told me it was clear. A recent Lyme’s test showed one particular strain as reactive and all the others were good. I was told it’s not enough to be concerned about. However, I talked with a friend who is treating for Lyme’s and she told me that’s not true. She is currently treating for Lyme’s naturally …no antibiotics & it goes way deeper than antibiotics. I’m going to post the link to the site so anyone out there interested can check it out!http://www.inspirednutrition.com/3/3_Step_Natural_Answer_for_Lyme_Disease.html

  12. Hi everyone, I have had NDPH for about a year and a half… I am 16 and am going into my Junior year of high school… I definitely feel for you all, it’s hard to put on a happy face when you really just wanna go hide in a dark room by yourself! I lost more than half my classes and had to drop out of them during the school year, and I left with one friend. People who don’t have NDPH don’t understand enough to have sympathy (especially teenage girls!) so far my options for treatment don’t look good, so I have realized that I will have to learn to live with it (however opposed to it I may be.) I have tried about every medicine there is, Topomax was the worst, (and I just “love” when people say I should try taking Advil) and at my last appointment I had Botox injections, and had an allergic reaction (plus the fact that it had not effect) and the only other thing I am aware of is a nerve block, but my doctors haven’t mentioned that to me (it might not be an option for me, I just found in doing my own research.) My next appointment is this Tuesday and I am nervous to see what will happen (or possibly won’t happen…) I have found that NDPH is a very lonely condition to have, but it comforts me to know that there ARE people out there who DO get it and actually UNDERSTAND what I’m going through…. I hope you all find relief like I know I am looking for, so good luck in your future endeavors! Maybe someday they will find a cure-all for all our problems.. (Wouldn’t that be nice!!!!)

  13. My son suffers from NDPH and has had Lyme tests showing negative; what kind of Lyme treatment did you undergo? Just the regular antibiotics? Thanks.

  14. Hi Amy! I’ve just found your page here after months of researching this constant headache I got suddenly in class. I’m nearly 17 and half way through last year everything changed. I was sitting in class when all of a sudden this ‘headache’ sprung on me, I waited it out and ended up taking some painkillers. It didn’t do a thing. I thought I could sleep on it but that didn’t pan out. I told my mum and after a week we went to the hospital. Because there were no physical signs of anything they sent me back. I went to my doctor and told her my symptoms. At this point I was feeling highly nauseas a lot of the time, feeling so lightheaded, had a headache that just never went away. She thought it may be migraines or tension headache so she prescribed me with some migraine preventatives and stronger painkillers for the mean time. I didn’t respond to any of those. I went back after 2 weeks and she prescribed me with different pills and referred me to some tests including MRI. Everything came back clean and I just couldn’t understand how. By now I was getting frustrated because I couldn’t sleep, I had all my assessments and after 4 weeks people started to think I was tricking my mind into it. This made me even more frustrated that people thought I was doing it to myself. I couldn’t find anything on similar on the internet and I thought I was completely alone. After 5 months I still wasn’t any closer to finding an answer and all I was doing was getting poked and tested. I missed a lot of school due to appointments and sometimes not being able to function properly. Still now after 10 months nothings changed and I have never had a break from this headache. The pain varies from dull to immensely sharp and excruciating. I’ve read now on your page that some people have had it for years! How do you cope? I think now I’ve learned to just live in the moment, but there’s still times where I just breakdown. The best relief I’ve had is now, as in not from the headache but finding out that other’s are going through the same thing. And that this might actually be a lead.

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