Hello all,

This is my first time on this site and just trying help educate myself more about CH.  I have been doing a lot of research online since I'm self employed w/ no med. insurance and now indebted to dental bills.  

I had a lower left molar extracted in Jan. and had just finished a quad-sectional dental cleaning (three weeks ago tomorrow) when my first headache occurred the next day.  The last cleaning was on my upper left quad, which is the same side as my headaches.

When my first episode happened, I took a couple Excedrin and the pain receded in about 30 minutes and felt fine the rest of the day. So, I thought it was just a regular headache, though very intense and only on one side.  However, around the same time the next day (5-6 pm) I had another one that came on much quicker and more severe, so I took a couple Percoset left over from my extraction.  30-40 min. later the pain receded and felt fine again, except very woozy I suppose from the Percs.  

I was fine the entire next day, then episodes over the weekend 1-3 times per day lasting 15-90 mins.  That's when I went to webmd and looked up my symptoms.  Though there were several possible conditions, due to the number of areas affected, the two conditions that were closest to my symptoms were chronic headaches or a dental absess.  

Since this was the first time I'd ever even heard of CH and had never had anything like this before, I scheduled an appointment with my dentist (of course they couldn't see me until the next week).  So, I went in, they took xrays and told me I would eventually need either an extraction or root canal on an upper molar.  They scheduled my appointment for April 9, to give me time to decide (whether to extract or root canal).  They also wrote prescriptions for more percs. and penicillin.

With all the dental x-rays I had previously, I didn't understand why they didn't know that sooner and were somewhat nonchalant in setting my next appointment.  So, I continued my research online (mayoclinic, WHO, AHS, etc.) and saw I have all the classic symptoms of CH, except I never get them at night (6am to 9pm only).  Since I had also read that many CH sufferers have needless tooth extractions and some started after extractions, I became more concerned, not wanting to lose another tooth (I have all of them except the one mentioned earlier).

I am curious if there is anyone else here that may have had dental work prior to their first CH experience.  During my extraction, I was put under with an IV in the arm, though during the cleanings they gave me Novocaine shots in my gums.  

I would be interested in scheduling an appointment with an MD that specializes in CH, though I am on limited finances and no insurance.  Can anyone refer me to someone in northeast ohio?

I'm not really sure what to do next except educate myself to make the best decisions for my situation.  I really don't like taking pain killers or even aspirin if I can help it.  I have a pretty high tolerance for pain, though I've never experienced anything like this before. Having done all this research, I really don't want to fall to the same adversity that many of you may have had to experience (misdiagnosis, needless extractions, mounting bills, etc.).  Any suggestions you can offer are much appreciated.  Thank you.

Have you taken the "cluster quiz" on the left of this screen? It's a good place to start. For most of us pain killers are of little to no help for CH attacks.

I understand your situation but self diagnosis is risky. CH won't kill you but it can make you wish it would. There are some Neurologists that specialize in CH in the Cleveland area. Go to START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and click treatments then scroll down to sufferer recomended Doctors.

I hope you don't have CH but if you do you're at the right place.

Welcome to CH.com and good luck,  Don

Getting a real diagnosis can help rule out dental or sinus problems, and can also rule out much more serious problems.  

Hi Don,I think self diagnosis will probably cause you more pain in the end

Get youself to a Neurolgist. There is lots of info you can print out from this site to bring with you.

Read up on o2.

All the best.

Hi Don
like the other's said self diagnostics can be a very risky thing besides if you do have CH there are more effective ways to treat it ,but you have to find a good neuro that knows CH and thats important.
i think I read somewhere it takes an average of 6 years for most of us to get properly diagnosed. that doesnt mean there arent a few things you can do to help yourself.
think about ice or heat packs (i like cold some like heat so i am told) i use a bag filled with rice cause it works for both. it also conforms to the head. also give chugging an energy drink down. here in the states i use coffee based monster drinks.
I am a chronic now 7 years and episodiac 20 years prior to that the reason i say that is i get very few nightime hits but several morning and evening and lots  in between.
i say this cause i related to what you said about nighttime, please remember though i am bit of an odd duck here. in that regard!!!!!!!
hope this helps

Karl 8-)

Do take the cluster quiz and record the results. Then start keeping a headache log, as detailed as possible. When they start, how fast they build, how high the pain goes, how long it stays at peak how fast it leaves. The details will most likely provide the correct diagnosis.

I'll echo what the others said about self diagnosis, it can be risky. That being said, read the oxygen link on the left. If you have access to oxygen, get on it as soon as an attack starts. If it kills the attack, that's a red flag warning you probably are dealing with CH.

Also try pounding down an energy drink at the start of an attack, any containing the combo of caffeine and taurine, many can reduce an attack that way.

Hang in there and stay away from the opiate pain killers. They won't touch the CH pain and carry a whole laundry list of bad side effects!

Joe

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE  On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

Thank you to everyone!

I know that trying to determine what is going on is best left to a professional, so that is why I am trying to get as much information together as possible before I commit my finances and time in one direction or another.

I have taken the quiz and all my answers coincided with typical CH symptoms except #s 9 & 10.  I rarely get them past 9-10 pm, so not while I sleep.  I have woke up once with a headache at 7:00 am, but that is around the time I usually wake up.  Also, the times of year (since this is my first time dealing with this) and time of day.  They come on almost every day between 5-6 pm, whether I've had one or more earlier in the day or not.

Also, thank you for the relief suggestions, I will definitely try the energy drink.  I had been taking an aspirin, percocet or vicodin as soon as I feel one coming on (just learned what a shadow is), and that helps sometimes... other times it last longer... but I just don't like taking the meds if I can help it.  

I also try deep breathing exercises and relaxation methods (sitting upright), which have helped on occasion.  Though have also tried self massage on the back of the neck, which has also helped.  During attacks it feels almost like raw spaghetti in my neck muscles on the left side, until I massage them out. Then its like it all just drains away.  I would like to stay with natural methods of relief however possible.

I will keep posting on my progress and actions in the meantime.  Thank you all again.  Oh, and I'm not sure where "Don" came from  :-?... but you can call me Lou.  Thanks again.  8-)

Couple of things!!! The night time hits...the first 20 years I was NEVER woken from sleep with an attack. Always mid morning and late afternoon. Hit my 40's and they went all over the chart. So the timing of the attacks is a guide to diagnosis, but by no means an absolute.

The neck thing. Many of us get a "knot" or lump when we're in cycle and can get some relief massaging it. Hyperventilating will help reduce pain for me if I'm away from any of my meds. Strong coffee or the energy drinks will help with the shadows too.

Joe

Hello and welcome. Im bill from Euclid OH. Got a great GP out here and id be glad to shoot you a referal. Sounds to me like you got a full blown cycle going, only thing was my CH started as nite hits. They always due. If you need the doc's number let me know.


                                       Coach Bill