May 24, 2011

New Daily Persistent Headache Syndrome

Yesterday I saw the headache neurologist I have been waiting patiently in pain for over two months to see. He gave me about 15 minutes of his time, asked me a set of very cut and dried questions and cut off most of my answers before I could finish a complete sentence. Luckily my mom was with me and was able to tactfully yet forcefully interrupt him by saying "can I ask you a question?" and got a few questions answered that way. I know a lot of doctors suffer from what I will term "no bedside-manner syndrome" but this guy takes the cake. He was completely deficient in people skills. I was completely unsatisfied with my appointment I had waited so long for. And even more disappointed that my follow-up appointment is another seven weeks away. He wants me to chart my headache pain level on a scale of 1-4 (4 being debilitating pain) until my next appointment and then he will decide what medication to try me on. Gee, sure would have been nice if the office gal would have asked me to chart my symptoms over two months ago when I made my appointment and I would have had plenty of "data" for him and would not have to suffer for another 7 weeks without any medicine to offer relief.

I left his office feeling a little defeated and also feeling like this guy didn't even let me tell him half my symptoms. He told me to go home and google new daily persistent headache syndrome, he said he is almost positive that I have that, but wanted me to read up on it and let him know if my symptoms matched or not or if I disagreed with his diagnosis. Which I absolutely do. Not only are the daily persistent headaches characterized by "mild to moderate bilateral pain" (hello, mild to moderate pain doesn't even phase me, but the intense pain that literally gives me goosebumps and produces muscle knots the size of ping pong balls behind my temples certainly does) they are also not known to have a specific cause. I can pinpoint the day the headaches started and a triggering event. I'm sure it's no coincidence that I've had horrible headaches centered around my jaws since September of '07 after that fateful impacted wisdom teeth extraction when the oral surgeon informed me that I would probably end up with a bad case of TMJ after the surgery (my car accident 3 weeks later didn't help either). Of course, the surgeon neglected to inform me I would end up with dysautonomia, but who could have ever predicted that. It gives me the shudders whenever a friend or relative says they are going to get their wisdom teeth pulled. I wish I would have never, ever had mine out as I blame both my TMJ and POTS on that stupid surgery. I went in young and healthy, and came out a few hours later in the body of an 82-year old woman.

Unfortunately I think yesterday was a waste of an appointment. A bullshit diagnosis that my pre-med friends in college could have more accurately diagnosed. And even more unfortunately for me, that leaves me back with the same old TMJ diagnosis which is not only a very stubborn pain that's hard to knock out, it's also a condition most medical insurance companies will not cover at all. Most dental insurance companies will cover a little bit, typically $500 a year with a $5000 lifetime maximum. Which is hardly enough to cover the cost of one nightguard let alone more effective but costly treatments like botox or even surgery.

I am sure new daily persistent headache syndrome is a very real condition with very real sufferers. I just don't think I am one of them. I would be willing to bet money that that's one condition I don't even have. It almost seems futile to go to most doctors anymore when my POTS friends are so much smarter and offer better advice. I'm talking to you here, Claudia. Thanks to all my friends in the dysautonomia community for being both smart and supportive. Too bad all of us aren't doctors, we'd be a heck of a lot better at it than the ones practicing now.


  1. I am really thankful to you for this great Blog. Since chiropractic care is based on natural care they can help you avoid the use or overuse of pain medications and other drugs that often have serious side effects and can increase your health issues.

    Head aches Sydney

  2. Thanks Samual I am glad you enjoy my blog. I have tried chiropractic care in the past (atlas adjustments) and had a very good result for about a year. However this year my headaches have been worse than ever and have not responded very well to anything, even chiropractic. Thanks for the info!

  3. OH MY GOD - (My mouth is literally open so wide!)

    MY POTS AND MIGRAINES AND EVERYTHING started AFTER I GOT MY WISDOM TEETH OUT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I kept telling the neurologists, cardiologist and every freaking doctor that I have been seeing that it started after "complications" from my wisdom teeth surgery!

    I cannot believe that you have had the same experience. It sounds weird, & I don't wish you pain - but it i really nice to have someone going through the SAME EXACT thing as me : )

    I have been on SO many medicines for migraines. Be careful as some can really effect your blood pressure/heart rate and are not good for POTSies. Sadly, I could not find a medicine that worked for me, didn't give me awful side effects or that I could take because of POTS.

    I see the post above. I have been working with a chiropractor for almost 4 months now & finally saw improvement after about the 2-3month mark. It is just too expensive to continue and my symptoms are still as random as ever : /

    I would love to talk to you more if you want! You can always email at ambivalentbliss(at)gmail(dot)com if you need someone to talk to : )


  4. Hi Erin!

    Wow you're not going to believe this but I know another girl who also developed dys following wisdom teeth is really kind of strange that we all have such a similar experience. I am sorry you're sick also, it sounds like we have very similar symptoms and an eerily similar onset!

    I have not tried any migraine meds yet---that's the next step and I am a bit scared to because of all the nasty cardiac side effects.

    I did try a round at the chiropractor this year but this time nothing has worked. :( Symptoms still random here too.

    I will def email you as I would love to hear your full story! I am also available via Skype, Facebook, cell phone etc. but I will send you an email with that info.

    Thanks for reading Erin! I'm glad we found each other! :)

  5. I am REALLY glad I have someone to relate to even further!! It was my mom who was constantly pushing at the doctors saying "I know it sounds strange, but this all started after she had her wisdom teeth removed..."

    I told her about you & she is ten times more confident on her theory! :)

    Looking forward to hearing from you soon maybe!

  6. Hiya.

    Great blog!

    I haven't much energy, so I'll keep it short. I thought I'd just throw out this suggestion: if you're still having profound headaches you may want to look into antiphospholipid syndrome. I have a myriad of dysautonomia related issues, as well as antiphospholipid syndrome. It turns out the latter was causing my excruciating headaches that were happening on a daily basis at one point. It's a very specific test for basically, thick, sticky blood. It's also an autoimmune issue. Your best bet is to ask a rheumatologist or gynecologist to test you if your GP isn't familiar. It can cause all sorts of havoc and certain meds for dysautonomia can aggravate it, as can birth control pills.

    You never know, it could be your answer. That's why we cruise these blogs, no? To help one another put the pieces of the puzzle together through our experiences.


  7. Wow, Jenji!!! That is very very interesting and I will definitely do some Google research and ask my doctor about it. With dysautonomia it seems most of us have multiple conditions. I have never heard of it before so thank you so much for sharing!!! Is there a cure or treatment for it? I am now currently off birth control pills as my blood pressure went sky high on them but I wonder if something like this antiphospholipid syndrome could be to blame for that... Thanks so much for sharing, I always love getting health tips!

  8. Ugh, this is exactly why I'm terrified to have my wisdom teeth out. I already have POTS symptoms, and I've heard the surgery can cause it or make it worse. But is there any alternative when the dentists say I have to get them out? Eek!

  9. Hi Laci,

    I would go on a long course of antibiotics and only remove teeth if they are infected or damaging surrounding tissue. Simply being impacted (not erupted or partially erupted) is not a good enough reason to take them out anymore. In fact the ADA does not recommend the prophylactic removal of wisdom teeth because the risks of the surgery and anesthesia often outweigh the benefits. If you have to have one pulled, please take my advice and ONLY allow your surgeon to pull ONE AT A TIME, and only allow him to take them out if the infection doesn't clear after antibiotic use. In the meantime, get a waterpik and some Listerine to prevent them from becoming infected.

    I am not trying to scare you as many people come out of the surgery just fine. The biggest issues are blood loss, anethesia and loss of fluids. Be sure to inform your surgeon that you need extra saline fluid and that your vitals need to be monitored. If possible, I would advocate having them removed in an actual hospital instead of an oral surgeon's clinic. Hospitals are better equipped to handle complications should any arise. Also, if you are only having one tooth pulled, they may be able to do it without putting you to sleep (that is more for their convenience than yours). Just make sure they numb you up well.

    Hope this helps! I am a strong advocate of not getting wisdom teeth pulled if there's any way to avoid it.