Weak and Invincible

Weird title? I know. Living with this headache is weird and horrible, but on some levels, I feel invincible.

I have made it through 5 1/2 years of almost constant pain. There are days that I think I can handle anything at all because of this experience and that the rest of the world is just full of whiny wimps crying about their colds, allergies, acid reflux and irritable bowels.

Do I sound a little bitter? Yeah, I’m working on it.

I might as well be wearing a cape and tights. I am a wonder to myself. Except when I’m in tears from the pain, beating myself up for eating a little brownie and triggering misery in exchange for a few minutes of chocolate heaven. Or when I realize I lost another day to the pain, unable to push through it and get work done, or enjoy a beautiful day with my kids.

So I’m weak and invincible. I’m angry but hopeful. I know that I am better now than I was 5 years ago.

From what I have seen and experienced, it seems that as the years go buy, we go through some kind of mourning process. First, we can’t believe this is happening to us.  How could this be happening? How could the doctors not know what to do to help me?

Then we deny it and try to go on with our lives. When we realize our lives are just not what we want them to be, we hit bottom.

Depression sets in.  It only makes things worse. So we get up again and try to put things back together. We try new meds or alternative treatments. We keep going.

We keep going. We may be sad for the life we wanted and don’t have. Sad for the precious time our pain is stealing from us. But we go on.

Acceptance. At the 5 year mark I hit acceptance. I hear of people having NDPH for 10, 30, 40 years. If that’s what I’m in for, so be it. I’ve made it this far.

I’m not saying that I’ve given up. I’m saying that I accept this situation for what it is and that has been empowering somehow. This is it. I’m going to deal now. It still effects me daily, and people don’t understand, but I can handle it.

At least most of the time.

What about you? Are you sinking, swimming or treading water?


Weak and Invincible — 12 Comments

  1. Hi Amy and all. Your post touches me as it is so true that people don’t understand this HA, even doctors. But like you I’m going to remain hopeful. I have not done much in the past 10 years to try to get better, but I’m going to make another effort. I’ll let you know what happens, Bob

    • Thanks Bob. And please let me know what happens and what type of treatment you try. I think we all go through phases of not bothering with anything new – out of sheer exhaustion. I’m there now. 🙂

  2. Hi Amy,

    I came across your article and your blog, while doing research about NDPH. My daughter (who just turned 18) began with her headache Sometime last year (January or February).

    I guess I’m one of those people who “don’t understand”, although I am trying as much as possible to understand.

    She is now refusing to continue going to the Doctor. Today, we cancelled an appointment for her and decided to respect her feelings. It was a tough call. I fear overlooking something important, by not continuing to try looking for an answer. But right now, she claims that us forcing her is only aggravating her headaches.

    Thank you so much for writing about your ordeal. It has given me some insight into how it must feel and how frustrating it is. Of course, I know that it is something one cannot actually “know” unless experiencing it yourself, but I am doing my best to understand as well as I can.

    Good luck with your search for relief!

    • Hi Wendy, I didn’t mean to be offensive with my “no one understands” banter. Truthfully, I think if it was one of my daughters suffering through this, my frustration would be even greater.
      I think it is wonderful that you are researching and looking to help your daughter. She needs that help – and if she asks to be left alone with her pain for a while, she needs that too. The fact that you are trying to understand and support her says so much. She’s lucky to have you.
      I remember I reached a point where I wouldn’t even go to the eye doctor or dentist because I couldn’t handle anyone getting that close to me. It’s tiring, being poked and prodded, tested and experimented on. It became clear to me after about a year of it that the doctors where mostly guessing and going through their long list of possible drugs to treat the condition. Still, it is part of the process.
      At this point, maybe you could focus on relaxing treatments like massage, acupuncture or chiropractic. It’s worth trying and will often bring the pain levels down a little and give her even a small sense of well being.
      As far as missing something important by not going to the doc, if she has already had the full range of tests, a break from it may not be the worst thing for her.
      I hope she is having a low pain day, and that you are having a “low worry” day.
      Please keep us updated. 🙂

  3. I wasn’t offended at all. Sorry if I gave that impression. Thanks for your encouragement. She has actually done a combination of chiropractic and massage therapy. I think it has helped in a very small way. We have talked about accupuncture but have not followed through on that yet. Thanks for bringing it up. It served as a reminder to me to schedule another appointment for her. Last time I checked with her, I believe this was something she was willing to do.

    She plays softball and therefore has a few other things that make chiropractic and massage therapy helpful.

    Thanks again for everything.

  4. I am having a really hard time right now, and I often say I should be wearing a Gold medal or something to show how amazing I am. Mostly because people can’t see what it takes to get through the day. The strength it tkes just to get out of bed and do all the things you can just to make yourself fell less miserable. I gphave been working with Dr. Rozen who sent me to Dr. Kline for a sphenopalatine ganglion rhizotomy. I did a bunch of lidocaine blocks first and when we go to this area it seemed that it would help, but having the rhizotomy did not have the same results as the lidocaine block. I am no in the dumps, struggling to find a reason to even be alive. I will keep myself alive for my 13 month old son Justin and my husband of 8 years, but I’ve been going through this for 4 years and I’m so tired of nothing working. I’ve tried physical therapy, accupuncture, heavy metal detox, chiropractic, the candida removal diet… MeaningI gave up sugar, gluten and dairy for 4 months. I have detoxed myself of all kinds of things all to no avail. I am so done and feel so hopeless. I was convinced I had Lyme diseas for years…. Took the expensive Igenex test three times, and it came back negative every single time. I even took extremely high doses of antibiotics for months hoping it would cure me. I need help. I’m lost. Someone help me find the way.

    • ((((((((((((((((Sarah)))))))))))))))) You ARE strong! I know exactly what you meant about weak and invincible. Not because I can feel what you are feeling. I don’t have NDPH. But I believe my daughter does. She has had this headache for more than a year and a half now. And although she is my child…she is also my HERO in many ways. She manages to play sports with her headache! Perhaps hers doesn’t get as severe as yours does. All I know is that I admire her so much. And I admire you for being strong. I have so much empathy for anyone suffering from chronic pain of any kind. It must be so frustrating!

      My daughter has expressed some of the same frustrations as you. She also tried many diffent options, including acupuncture (which ended up being pretty horrible for her) and chiropractic (which gave her very minimal relief). She also tried some massage therapy (not sure how much that helped) and several different medications (which seem to have damanged her stomach). She finally decided (at least for now) to stop looking for a cure. She just decided (apparently) to live with it.

      I think that each person going through this, has to figure out for themselves how aggresively to search for a cure.

      I had suggested to her a few times (as did her chiropractor) that she try practicing yoga. She seemed somewhat interested, but never followed through. I’ve learned to step back and let her take the lead on figuring out what’s best for her. It was a little hard for me to do, because she was 17 when it started. My biggest concern was that she would give up and miss out on finding her cure.

      I have decided that if there is a solution out there, perhaps she will stumble upon it one day.

      Mosty, I just wanted to give you some support. If you think Yoga might help, you should give it a try. But I also know (from what my daughter says) that sometimes all the well meaning, but unsoliced advice can be annoying as well.

      Good luck. God Bless and hang in there! I pray that you will find your cure soon, or at least the stregnth to continue coping.

    • Hi Sarah – You have been through so much. I’m so sorry that I can’t say with any certainty what will help you. I struggled in the same way for close to 6 years myself. Some days I still feel the way you are feeling.
      Regarding Lyme, I have now been on antibiotics for 10 months and I am not fully recovered. I still have days / weeks of headaches at a time. They are slowly getting better. If you think that Lyme may be the problem, please find a Lyme Literate MD. They will look at your symptoms because blood work is rarely accurate with Lyme and its coinfections. Have you been tested for the coinfections? (Erlichious, babeosis etc.) The main symptom of erlichiosous (I can’t spell it) is headache.
      Please hang in there. your family needs you. Feel free to email me or comment here again if there is any way I can help you.

      • Dear Amy,
        Believe it or not I was tested for all of that within the first 6 months that I came down with the headache. I took antibiotics for a month because my Lyme Doctor was so sure I had it regardless of the test and absolutely nothing happened, no herx, nothing. I have since revisited that diagnosis several times but even with all the coinfections and doing it through Igenex nothing comes up positive. I appreciate that you can relate to how I feel. I had spent the past year sort of giving up on finding the root cause and just trying to treat the pain with Dr. Rozen and a surgeon he works with, Dr. Kline. I’ve reached a point now where I want to go back after the root cause. I am starting on the blood type diet (Eat Right for your Type) tomorrow to see what that does for my energy levels. When I am careful about what I eat, do physical therapy and spend enough time pampering myself I do a lot better in terms of functioning. As you know, this is not always possible because of how challenging life can be sometimes, outside of just our daily chronic pain. When stress gets the best to me, I come apart at the seems. I know I have to keep going, so I’m going back to counseling next week and stocking my fridge with tons of veggies so I can get myself back to a better state of mind. It takes so much strength to fight through pain everyday that is not controlled my meds and to pull yourself out of depression. In my experience, no matter what meds you take if the pain isn’t controlled, anxiety and depression are constantly at your door. I love my family with all of my heart. My husband and my son give me strength to get out of bed and face this very challenging world. I am going to keep searching, but I have to do it at a slow pace. I’m tired of feeling like a human lab rat, poked and prodded at every turn to see if something will work. There has to be better research, awareness and support out there for us. We have to come together and make it happen. Thanks for starting the blog and getting the word going. I will give you my whole story when I’m up to it. It would be a good one for your book. I have searched the world trying to heal and will not give up until I find a way to get rid of this pain. I will reclaim my life, or at least not give up trying to. Lots of love from one woman living a parallel existence, Sarah

  5. My husband has had a headache for 5 years. He was diagnosed with
    ndph by Dr Evans in Houston, Tx. His headache is a 9 to 10 on the scales.
    rarely does it go under that lately. Medication is useless. He now suffers
    with nausua for which he takes medication.. He also suffers with
    a burning sensation to his head on many occasions, not constant but
    he feels like his head is on fire when it happens. His sleeping patterns
    are getting more frequent, taking 2-3 naps/day, just to escape from the
    misery. Bottom line is he sleeps more than he is awake. I hope
    and pray that there is research on this mystery headache and they
    can pinpoint the cause. We have gone to many dr’s and alternative
    procedures with no hope of getting even a little relief. The depression
    is almost as bad as the pain. We have tried antidepressants to no avail.
    They actualy made him feel more nausuaus.

    • It must be tough on you as well. Watching your husband suffer…
      Is he able to collect any disability benefits? I became curious about that when I was trying to figure out how my daughter was going to get through college with a constand headache. I tried to find scholarships for students with disabilities. It seems that there isn’t much disability support out there for people who suffer from chronic headaches. I find it odd, because it is certainly disabling at times, if not always…

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