Looking for hope

Hey, I am new to this forum.  I am really having trouble keeping hope that I will ever get rid of my headaches so I am posting here hoping to get some ideas, suggestions, or just inspiration.  So here's my story...   Starting around November/December of 2005, I began having headaches daily. They varied in intensity of dull annoying pain to debilitating.  I have never been one to rush to the doctor, but the headaches finally pushed me to see a doctor in January 2006.  I started with an internist who was recommended to me.   She had a few ideas and I had the following tests performed during my time seeing her: ·          MRI - No abnormal signal is present in the brain.   The ventricles and sulci appear normal.   There is a 3 cm cyst in the left maxillary sinus.   The other sinuses and mastoid air cells are well aerated. ·          Blood work - Blood sugar identified as low, otherwise normal. ·          4 hour glucose tolerance test - Mild hypoglycemia. I apologize if some of my timeline is off; I have just seen so many doctors and tried so many drugs, that I cannot keep them all straight and I currently have one of my worst headaches in months.   Anyway, at some point she recommended me to a neurologist.   I was not too impressed with the neurologist who was quick to just try me on some more drugs.   I cannot recall which doctor tried me on which drug, but the following are some of the drugs I have tried: ·          Diovan ·          ZoneGram ·          Depakote ER ·          Fioricet ·          Maxalt ·          Zomig ·          Amerge ·          Axert ·          Relpax ·          Frova ·          Imitrex During this time, I had gotten fed up with the doctors who did not put much effort into finding the problem and just wanted to give me drugs.   I decided that I would try an allergist since my Father had been allergic to a few things and prior to this time, all my headaches had been sinus related.   It was the allergist who has really helped me the most.   She certainly seemed to care about finding a solution and always spent more time with me than any of the previous doctors. Under the treatment of the allergist, we identified that I was severely allergic to dust mites. She did not want to give me shots immediately and I have since made some changes around the house to alleviate this threat.   Also during my treatment with her, she suggested that I see a pulmonologist as she had a suspicion that my headaches could be caused by sleep apnea.   Since sleep apnea is typically found in older, overweight males, I did not seem to fit the profile.   I was only 26 at the time, in good shape, and certainly not overweight.   She assured me that that was a common misconception.   Once I say the pulmonologist, he let me know that it is actually much more common than once believed and that they typical stereotypes were certainly not true. Well, the pulmonologist did the test and sure enough, I did have sleep apnea.   I began sleeping with a CPAP machine to help with this, but still no break in the headaches.   Her next suggestion was an ENT who I also found to be very helpful.   The ENT found that I had a “remarkable” deviated septum that was possibly putting pressure on my sinuses and that it could potentially be causing the headaches.   I believe it was the ENT who also ordered a CT scan.   Anyway, while he did not guarantee that fixing the deviated septum would help with my headaches or my sleep apnea, I went forward with the surgery.   During the time leading up to this surgery, I had seen another neurologist who is a “headache specialist”.   Because he is incredibly busy, it took me six months to get an appointment.   The first visit, he just gave me more drugs.   I scheduled a follow-up, but it was another three months away.   They pushed it back two more times and then when I finally went in for the appointment, they told me it had been rescheduled again.   Apparently they just forgot to tell me this time.   So I decided that a doctor who can only give me 10 minutes once every six months isn’t going to be very useful to me and I cancelled my appointment.   I had the surgery for my deviated septum in January 2007.   Following the recovery time, it seemed that my headaches had been relieved.   I say relieved, not cured, because I would still have them from time to time, but they were no longer daily and they were never very intense.   I have always been athletic, but I really found myself unable to stay active during the year plus period when I was having headaches, it was a relief to be able to get back to a more active lifestyle.   Since the surgery, I have been exercising on a regular basis and have felt like I was able to work and to enjoy life much more.   Since they headaches had not completely gone and I have had some trouble using my CPAP machine since the surgery, I have continued to see the pulmonologist and the ENT.   I know that I missed some drugs that I tried along the way; I just couldn’t remember where in the timeline they belonged.   I know that I have taken Midrin, Topamax, Lortab, and some others.   In all honesty, the only drug that ever helped with my headaches was Lortab and I really didn’t like taking that since it just made me feel light headed.   However, on some days I would gladly trade that for some relief from the headache.   Anyway, this brings me to current day.   From February through July, I was feeling much better.   I had very few headaches, regular exercise, and a good diet.   Then, on August 5 (two weeks ago today), I got another bad headache.   At first, I thought this headache might be sinus related as I seemed to have some congestion and drainage.   Well, when the headache persisted for a few days and my sinus problems got better, I knew this was not just sinus pressure.   Since then, I have had the headache continuously and have had quite a few days that were very intense.   Since I thought this time it could have been triggered by the sinus problems, I went back to the allergist where we ran a full allergy test and she gave me some Veramist nasal spray and some Allegra D.   I have been on these for a couple days now and still no relief.   I have an appointment coming up with my ENT and pulmonologist in September, but I really just don’t know what else they can do for me, I am really beginning to lose hope.   None of the doctors seem to have any clue what is causing my headaches, much less how to cure them.   I am looking for any help, suggestions, ideas, or just hope…   Thank you!  

Hi Matt,

Boy, you've really been through the doctor mill. At times, I think chasing doctors is almost as bad as having headaches! Having said that, what I'd recommend is finding a headache specialist. Probably a neurologist, but not just any neurologist -- one who focuses mostly, if not entirely, on headaches. After over 15 years of daily headaches, I finally found a good headache specialist. While I'm not cured, it's such a relief to have a doctor who clearly knows what I'm talking about and has a good grasp of the range of options we can pursue.

One thing that jumps out at me is the sheer number of drugs you've tried in 1 1/2 years. For most headache drugs, you really need to give them 3 or more months to see if they are effective. So you may have tried something that could help you, but because you weren't getting knowledgeable advice, didn't give it a long enough trial.

How to find a good headache specialist is another challenge. There are a couple of headache associations (I don't think I'm supposed to mention other website addresses on this forum, but click the email link under my name and I'll send you the specifics). Starting a thread on this or other headache forums "looking for a headache specialist in ....." might work too.

All the best!

Matt,

The problem you're running into is that medical science doesn't really know why most headaches happen. Doctors and researchers tinker around with dietary and other triggers, but there's not really a very good understanding of why these things might trigger headaches in some patients some of the time (but not always) and not in other patients with apparently similar headaches. That's why your neurologists focus on symptoms, rather than causes; their training tells them they're unlikely to find the cause, once things like tumors have been ruled out. I don't mean to be discouraging, but that's how I understand it.

Most of the medications they use were originally developed for other ailments. Topamax, for example, is an anti-seizure medication used to treat epilepsy. By chance, doctors found that epileptics who also had headaches reported a decrease in headaches when they went on the anti-seizure medicines. So now doctors prescribe it "off-label". That's true for anti-depressants, botox, beta blockers, and a host of other medications used in treating headaches. If they can't figure out what causes headaches, they turn towards treating the symptoms. Another way of looking at this is that if a medication helps you -- say, a seratonin drug, like many anti-depressants -- that suggests that the cause of your headaches is an imbalance in the seratonin production/reception in your body and that the cure is taking preventive medication.

The fact that your doctors have usually only given the various meds a 3 week trial suggests they don't know too much about headache treatment -- there's the advantage of a headache specialist. I was on a full dose of 175mg of Topamax for 4 months before it helped.

I'm not too crazy about taking pills all the time either. But if it's that or headaches, the choice is pretty easy for me.

Post Edited (kymark) : 8/20/2007 8:09:51 PM (GMT-6)