New Daily Persistent Headache Support Group

My ndph started on the otherwise beautiful morning of September 30, 2010.

Like most here, I have been through sinus xrays, CT scans, MRIs of the brain and neck, MRV of the brain, spinal tap, medications, vitamins, an elimination diet of 7 months, and chelation therapy. The elimination diet was fun because I found out as a result that refined sugar causes my ndph to spike from 2-3 to 7-8 within 24 hours. I also discovered I cannot tolerate gluten and dairy.

Despite the best efforts of an excellent neurologist -- Dr. Steven Wheeler in Miami, Florida -- my headache has persisted. Pain levels were controlled (2-3/10) until about 3 months ago, when I developed migraines that last between 1 - 3 days. My ndph only spikes occasionally now (no more than 2x per month), but my migraines make up for that.

Prior to this, I never had a headache that lasted more than a few hours.

Everyone is so polite on this forum and speaks of the ndph more as an unwanted guest, instead of cursing/swearing at it. So am I not allowed to curse here?

Yasir

Hi Yasir,

Most of your story sounds quite familiar. Mine was a bit different since I had the migraine symptoms mixed in from the start (May 12, 2006) so to me it has always felt like one headache, but I got both diagnoses. When it is severe the migraine symptoms are more apparent (like now, I am shushing everyone and everything because they all seem SO LOUD to me, but I know they aren't really).

How long did you spend on each thing with the elimination diet? I have tried a different one and didn't get any change at all (besides grumpiness from cheese withdrawal). Just curious to know how yours was set up.

As far as the cursing, in general we try not to actually curse on the board because we have had (and may still have, I am not sure until they contact me) some very young NDPHers with us (sometimes silently because they are not always allowed to post, though some can if their parents let them). You can always resort to the first letter and a bunch of symbols so that everyone "of age" knows what you mean and those who aren't don't.

Unless the language is really bad or repeated a lot I don't tend to say anything about it. Diaries are another place where you can say pretty much anything you want and let off as much steam as you need to. The headache is definitely more substantial than a few words,

Hi Yasir and welcome to the group!

It sounds like you have a great doctor That is excellent news because having a good doctor is very important.

It's interesting that an elimination diet has been helpful for you. It's fabulous that it has worked so well. Many have tried it and not gotten great results. I am slightly sensitive to gluten and cutting it out helped a bit but not enough for me to worry about it all the time.

I'm sorry that you are getting migraines on top of your NDPH. I get that too and it is hard to tolerate. Are you able to take any abortive or rescue meds for the migraine symptoms? A lot of people find triptans useful but they have never worked for me.

Have you found any other meds useful in controlling your pain?

With regards to language, as Mary has explained, we try to limit any offensive language out of respect for other members. That doesn't mean you can't express your feelings. It is just preferred that you do it without using offensive language. Most members of this board are friendly and respectful, and genuinely want to help others. We look forward to hearing from you more soon.

Thanks guys, for the great responses and for making me feel welcome.

MaryR: On the elimination diet, I spent the first month to month-and-a-half eliminating most things from my diet. Then I brought back 2 main things every month. I was a sugar-a-holic so I of course decided to bring sugar back as 1 of 2 things I brought back in the first month. However, I quickly realized refined sugar, as an ingredient or raw, gave me a major spike in my headache. I have not had sugar, other than the trial period for 1 week, for about 9 months now. I use organic coconut sugar and have become quite the baker because I also have to use gluten free flour.

Enbee: For migraines, I use sumatriptan. I have only used it twice. The first time, I felt like I was having a heart attack and I wouldnt be able to get up. My headache got worse. The second time, I felt great the next morning (after 3 days of a severe migraine), but still had my ndph. For my ndph, combination of naproxen and verapamil seems to work best. I am still on a lot of vitamins, and my doctor has me on a number of gut-improvement pills, like probiotics and amino acids.

Thanks again for having this forum and for making me feel like you are really interested. It helps just being able to believe that!

Welcome! Its so great diet has helped you. Sugar is one of the things I haven't tried...I don't know if I could do it, as I too am a sugar addict. Anything else I could probably tolerate. I'd think that migraines would be more likely to respond to preventatives than NDPH. Are they willing to change or add to the Verapamil? Best wishes.

It's great that the naproxen and verapmil combo works for you. Verapmil didn't help me (other than making my BP really low) but I've been trying naproxen recently and it helps a little (although my overall pain isn't that bad these days).

It will be interesting to see if the sumatriptan helps you again. Hopefully it will work if you need it to. It's great to have something useful for when you get a bad pain spike.