Comments on: About Me

By: Christine

Christine — Wed, 08 Feb 2012 20:42:13 +0000

Hi Amy,
I, too, have NDPH. Have had it for about two years now, unfortunately. Have tried a ton of medications, physical therapies, just about everything. I tear up just writing about it. I try my best to ignore the pain unless it’s a really, really bad day, but it is really ruining my life. I used to be the most active person ever, and now I am at home, in bed so so much. The idea of having kids is out the window, since I can barely take care of myself. I can’t work full time…I could go on and on.

But I am writing because of something I saw mentioned in one of your posts–you said something about a surgery for NDPH. What kind of surgery is this? Thanks for any info you can offer. Not that I want surgery, but I feel like I will try anything.

PS–I’m a writer/journalist too. I wrote about my headache ordeal here:http://www.health.harvard.edu/blog/living-with-chronic-headache-a-personal-migraine-story-201103051601

By: Tammy

Tammy — Sat, 20 Nov 2010 06:40:50 +0000

Hi Amy & others that have found their way here. My husband was recently diagnosed with NDPH. His began shortly after surgery in May to repair a deviated septum. He has mostly high pain days (7-8+) and has only had one period of relative relief that lasted about two weeks.

We’ve been through what seems like endless tests & he just got back from a 10-day stay at the Diamond Clinic in Chicago. Like most, medications are not helping at this point. He just started a regimen of Nardil. It has some very heavy side effects, so if we don’t see a change soon we’ll discontinue it.

Anyhow, just wanted to say hello. I’m finding that the most difficult thing to deal with right now are those that don’t ‘get it’–especially family members. Any advice for how to deal with this? My husband’s dad just doesn’t understand that this isn’t a ‘headache’ in the typical sense.

Thanks in advance & best of luck to finding what works for you!

By: Chris Zacharias

Chris Zacharias — Fri, 29 Oct 2010 20:09:54 +0000

With respect to constant headaches, this is an interesting article about a teenager in Britain who has a permanent tube to drain excess brain fluid. It seems her body simply produces too much of the stuff and it caused her constant headaches.
Having read Linday’s comment about the meningitis treatment, I thought I’d post this extreme treatment.
http://www.migraine.org.uk/index.php?sectionid=1235

By: Lindsay

Lindsay — Fri, 17 Sep 2010 15:31:37 +0000

Wendy – I had a lumbar puncture when I first was getting headaches to see if I had meningitis. It is not required to determine if you have NDPH. I did not have a headache after the procedure but I was in extreme pain for two days and almost couldn’t walk. If you follow the instructions of the person performing the exam you can avoid all after effects that may be caused. I wouldn’t recommend the procedure; there is no benefit from it and there is no conclusive proof it can determine if you have the condition or not.

Best of luck

By: Amy

Amy — Mon, 06 Sep 2010 20:54:38 +0000

Hi Wendy,
I’m glad you found me, but I’m sorry that you are here and suffering. To answer your question, I’ve never had a lumbar puncture and I am not sure that I would consent either. I’ve been diagnosed by two different docs and they didn’t request it. Also, “little effect” is typical for people with NDPH. It’s resistant to most medications, though people do find things that work, it just often takes a lot of time. Sometimes you find something that works for six months and then it doesn’t work anymore.
Make sure that your neurologist is aware of NDPH. There are some newer treatments that may be helpful, but you need to know what you are dealing with.
I hope you are having a good, low pain day,
Amy

By: Wendy

Wendy — Sun, 05 Sep 2010 02:26:38 +0000

Hi Amy,

I found your website yesterday while doing research on NDPH. I have had non-stop 24/7 headaches since last November after contracting a virus in late October. I have undergone all the usual tests with the exception of a lumbar puncture which is apparently required to conclusively diagnose NDPH. I am worried about post lumbar puncture headache? Did you have one? My neurologist is calling my head pain chronic migraine at present but I am not sure if he is even aware of NDPH. My preventative/pain medications have very little effect and the more I read about NDPH the more convinced I am that I have the condition. I look forward to your reply.

Kind regards

Wendy

By: Bob

Bob — Fri, 12 Mar 2010 13:15:53 +0000

Hi Amy,
A common cause of NDPH is low csf (cranial spinal fluid) pressure. Sufferers may notice a reduction in the headache some time after lying down. If that is the case then you may have a low csf pressure headache. This can be caused by and epidural. If you have had an epidural in the past you may well have this issue. However there are also cases of people who get spontaneous low csf pressure, divers, pilots or even those sneezing or clearing their ears on a plane can get this condition. Often sufferers can remember almost exactly when the headaches started or what they were doing. If this sounds like you, try high dosages of caffeine, really, it actually works. If taking 2 triple shot starbucks coffees provides a significant reduction or elimination of pain then here are some treatments you can try:
doxycycline / singulair combo therapy
epidural blood patch, if this fails you may need to find the exact location of the csf leak and directly target it.
caffeine drip 500 cc over 2 hours followed by two weeks bed rest
Hope this may help
Cheers
Bob

By: Amy

Amy — Wed, 10 Mar 2010 14:09:40 +0000

Hi David,

I’m glad to hear that you found some comfort here and thank you for sharing your story. I am about to hit the 5 year mark with NDPH, and I cannot imagine what it must be like for you, having dealt with this pain for 14 years.
I can related to the ups and downs you feel. I have days when I can forget the pain and I can behave as if I am completely normal and like everyone else. And I have the bad days too, and I wonder if this is going to go on forever and if it does, how can I deal with it?
I hope you are having a low pain day today and feeling a little better –
Amy

By: David

David — Tue, 09 Mar 2010 00:37:52 +0000

Hey Amy,
Really great site you have here – am so glad taht I found it. I’m really encouraged by so many of your words. I’m also so sorry to hear that you have NDPH – I really can sympathise – my journey with this started 14 years ago when I was 13 and I still have the headache to this day – pressing down on me. After so many hospital consultants, pain medication and other therapies, I feel as though I’ve just about given up on this – some days i really don’t have the energy to go on. I managed to get through university and I have a job at the moment that I really enjoy. There are some days that I even forget that the pain is there. But it’s relentless. Feeling particularly depressed and low about it today (hence my stumbling across your site!). Hoping that we can all find some relief…

David

By: Amy

Amy — Tue, 02 Mar 2010 18:50:36 +0000

Hi Lindsay,
I’m so sorry to hear your story. I understand what you are going through, in so many ways. Generally, other people will not get what you are going through. I have found they get tired of hearing about my headache, even though I rarely talk about it. They prefer to act as if it isn’t here (but it is) and that I am fine (simply pretending as best I can).
Hang in there, give the hospital stay a shot. You have nothing to lose, right? As long as there are no major side effects expected from the pain meds, I am sure you could use the break from the pain.
NDPH is incredibly frustrating, but you have to keep trying. Have you tried the all-natural route yet? You may be able to find some “pain management” success with acupuncture, a vegan diet, chinese medicine….hey you never know! Everything is worth a try, in my opinion.
Please feel free to come here and vent anytime. I (and all the readers) understand and I’m here to help in any way that I can.
Amy