Subtype of NDPH – Thunderclap Onset

I have spent the past two days sifting through thousands of comments here waiting for approval. If you are a subscriber of the blog or comment subscriber, I owe you an apology! All of the approved comments many have hit your email over the past two days…and I know there were many. So I am sorry that I clogged your inboxes, but I also know that some of the comments contained important information.

I don’t have a good excuse as to why I waited so long to sift through the spam comments and approve the good stuff.  Will you accept the excuse that I had a headache? 🙂

Here is a comment that I thought was worth sharing with everyone.

“I’ve had NDPH for 5 1/2 years now – currently in the middle of treatment for Lyme. I wanted to post this recent article published by Dr. Todd Rozen. I think that, like myself, so many NDPHers’ headache began with this “thunderclap” type headache. I’d be interested in knowing if anyone has tried this calcium-channel blocker for the headache? If anyone has, or does try it and gets relief, please come back to post. As Bob H. has mentioned, it would be great to get a study going to discuss commonalities, treatments, etc. Several NDPHers, again like me, at some point during the headache course, have tested positive for Lyme and/or reported some sort of “strange rash.” I wonder how many with NDPH have been tested through a specialty lab for Lyme or other tic-borne illnesses? Here is the link to Dr. Rozen’s article:

Warm regards,

Laura P.”

Here is the link to the article by Dr. Rozen that discusses a treatment for NDPH with thunderclap onset. If you experienced a thunderclap onset of your headache, please take the time to go through this article:  The Journal of Headache and Pain

As you probably know, I tested positive for Lyme and several coinfections about 4 years ago, 6 years after the onset of the headache. I was tested multiple times when I first had the headache, but the results were always negative. I mentioned to many of my neurologists that I had a strange rash and muscle pain in my legs, but they all dismissed it as unrelated. I don’t know for sure that it was Lyme all along, but I do know that the Lyme treatment gets rid of the head pain, at least for a while. I can typically go about 6-8 months without medication before the pain drives me back to treatment.

As for the thunderclap onset, I’m not entirely sure. I always described that first moment of onset as pain falling on me. However, it did come on all at once and it was the worst headache I ever experienced and that high level of pain (a 9 or 10) lasted for at least five days straight before lowering a little to maybe a 7 or 8 on the pain scale.

I am so thankful that I am not there anymore. I may not be where I would like to be, but at least I’m not there, in such desperate pain and shaking with fear. I guess I  am accepting it all, to a degree.

Living with Chronic Pain

Over the past 10 years, I’ve spent a lot of time screaming over what I’ve lost. It’s only recently that I’ve begun to move on from the mourning over the life I had.

Let’s try to put together something that’s good for ourselves, however small.

If you have tried the treatment presented in the study, please let us all know how it went below in the comments section. I promise to approve it right away!


Comments

Subtype of NDPH – Thunderclap Onset — 7 Comments

  1. Your post prompted me to share my success story, as it is my hope that it will help someone else with NDPH.

    I have had NDPH for over 5 years, my headache starting after a viral infection in 2009. I do not recall a thunderclap headache in the beginning, but rather a gradual progression to chronic daily pain over a number of weeks.

    My journey has been long and hard, but I did find a light at the end of the tunnel when in 2013 a pain management specialist prescribed clonazepam. Within 24hrs my pain decreased dramatically from a daily 7-8/10 to 3-4/10, with continued pain relief since then. I added 3 monthly botox shortly after, and that also contributed to lower pain levels.

    I do have flare ups, and I have to lead a “new” quieter life, but at least I now have a life after losing it for 4 years.

    The Rozen article is very interesting, and I am so glad that there is someone out there constantly researching this horrendous disorder in the hope of one day finding a cause and subsequent cure.

    Wishing everyone the best.

    Wendy
    (Sydney, Australia)

    • This is wonderful to hear! Managing / reducing the pain to a level where you can lead a somewhat normal life is a huge WIN as far as I’m concerned. Congrats and keep us updated if anything changes. 🙂

  2. Thanks to Laura P for sharing the article from Dr Rozen! I did share it with my husband’s doctor and we’ll probably give the medication, nimodipine , a try. We are so glad to hear that some NDPH sufferers have found some relief. My husband has tried clonazepam and botox without any benefit.

  3. On March 6th 2014 I had Pituitary gland tumor surgery and I woke up with a pain in my head that has never gone away. I have had two blood patches for possible CSF leaks, several MRIs and CAT scans, nothing has come up. I am being told that I will just have to live with the pain. However, I was using niacin before the surgery and stopped the day before, but I just got back to it and during the flushing process the pain in my head is either gone or reduced dramatically. This process is called Vasodilation and it is the dilation of arterial blood vessels. The flush only lasts for about 15+ minutes but during that time I get some relief; of course I have to deal with the flush but that is no longer an issue for me. I have taken it a step further and think there might be a correlation between another gland which is next to the pituitary called the Hypothalamus and sodium. So at this point I am reducing the amount of salt (sodium) that I have to see what impact it will have on the pain level (I wake up with a 3/4 and by the end of the day it is a 6/7 but can be as high as a 9). Has anyone else had the same reaction during the niacin flushing? I am at 3,000 mg of niacin right now. If you decide to try niacin please read up on it, start with a very low dose (10 to 20 mg at first and build up until you get the flush) as the flushing can be a major issue for some people. The time release formula will not give you the flush so you need to use regular niacin. During the flush, it might be hard the first time since the process may surprise you, see how the pain level is.

  4. I have had NDPH for almost 19 months. However I did not experience a thunderclap type headache. I merely awoke one morning with a severe generalized pressure type pain. Since then the pain has increased in severity however I can go several weeks with relatively mild pain. As far as I know there are no obvious triggers. The only thing that throws a monkey wrench into the picture is that I have been battling chronic Lyme disease and coinfections.
    I have been on nimodipine ( mentioned in the article ) for little over two weeks. Initially I noticed a fairly significant decrease and headache typically ranging from 1–2/10. However, like many medicines I have tried, the response has not lasted,however most days The pain is typically around 3/10 and can reach 7/10.
    I plan to increase the dose and see where it goes.

    • Hi Sam,
      Please keep us updated on how things are going with this medication. I think many of us have experienced that same thing – a med helps initially, then stops working over time. Hang in there, and I hope the increased dose has helped a little.
      I’m not sure how far in the blog you have read, but I suffer from Chronic Lyme as well (and relapsing at this moment). Does the treatment for Lyme change the headache for you? I’ve heard from several others that also have Lyme / NDPH that it helps (but usually only temporarily).
      Amy

  5. Hi Amy, I am so glad you are getting back into the swing again. I only recently found this blog and had been wondering if there were any newer posts – not because I felt frustrated, but because I wanted to know that this “thing” we have won’t always overcome our ability to get on with life still. My ndph experience began just over a year ago, so I am a relative newbee to this life changing condition… however, it has already had an enormous impact on my life.

    As an academic (albeit one who is going to have to go on medical leave next semester, as I can’t keep up with my job), I would be fascinated to know the progress of your book project. Is it out? Are you still in the crazy phase of sifting through and organizing material? If you ever want to talk through it, I would love to hear more, and would be happy to be a bouncing board for problem solving. Anyway, in the meantime I will keep reading through the material you have here. I have many questions and comments to share, so I will focus on those.

    The very best wishes, I look forward to hearing more and learning from others’ experiences,
    Karen

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