Hi Chris!!

I am from Veracruz State but I live in Houston, TX. Yes I have been in Cozumel too and  it is a beautiful place!

I have been planning a trip with my husband and little girl but to another beach named Puerto Carrillo, QR is in the same state and is less known but no less beautiful and a lot cheaper too! hope you get the chance to go there some day!

talking back about the monster...I did not get one last night Thanks GOD!  ; I needed some rest...bad! now is just a matter to wait if this starts to go away soon, this is supposed to be my last month with CH and they normally start spacing ...HOpe so!!
I need to be rested for my daughter B-day party next weekend!!

Right on Adam!
Always great to put a face to a name.
Wishing you the best and a quick cycle.

Hi, I'm Bryant and I was diagnosed with CH today. This is my first round (2 weeks in) and have been getting ch's once a night around 1 am. I'm 21 years old and am a senior in college. I went to the university health center today and the doctor got it right off the bat. She prescribed imitrex nasal spray and verapamil 80 mg x 2 a day. I was relieved to finally know what had been causing these attacks (just glad it wasn't a tumor or something), but when I got to the pharmacy that relief left me. I have insurance but apparantly they don't cover the nasal spray. It makes me think of one of those master card commercials. Verapamil =$4, Imitrex=$217, Relief=Priceless. The only thing is, if it works it will definitely be worth it, but I simply can't afford it. I'm not eligible for ppa or any other programs I could find. My doctor mentioned 02 but said she didn't want to prescribe it to someone so young.  My question is what is the difference in price ($/use) and should I just flat out tell her that I want to try oxygen? I don't want to sound like I'm telling her how to do her job.
Also, do any of you have any advise for someone working full time and taking a full load of classes? And, during a cycle what kind of sleep deprevation do you have even if you have the beast "under control"?

Thanks, I really appreciate it.

Bryant

Scott's Profile

Hi everyone, I'm kind of new to the board.  I could swear I had a username and password back in the old days, but that was several laptops ago.  I'm from Chicago but travel frequently, work in Finance, not married.

I've had allergy headaches all my life, cluster headaches starting in February of 2000.  I'm fairly sure that it was triggered by the CPA exam; something about pension accounting probably set me over the edge.  Now, I'm one of the seasonal/episodic CH sufferers, almost always having a cycle in Jan/Feb and Sep/Oct. 

I've pretty much run the gamut of headache remedies including:
Maxalt (regular and MLT)
Medrol/Prednisone
Topamax
Immitrex (pill only)
Relpax
Zomig
Amerge
Intranasal Lidocaine
Ice/Heat
Showers
Even done sleep studies looking for apnea

Currently, I rely on the trusty cocktail of 3 advil, Axert, and Oxygen, with rocking/pacing or quiet "classical" music as socially acceptable.  Usually, I'm fine, if a little loopy, within 30 minutes of taking the cocktail.  Drug free episodes usually last 4 hours for me and involve dizziness, intense pain, eye watering, and feeling-overheated. 

Oddly enough, when I ran a marathon, I didn't get a headache for a year.  Unfortunately, knee problems keep me from distance running... though perhaps that's something for the rest of you.

I actually enjoy reading research on CH and hope someday I'll find something that works 100% of the time for me.

Recently, I saw a press release about a non-invasive "cooling" device used in stroke patients.  I've been sending them e-mails suggesting they at least consider the impact on cluster headache patients.  No response yet.  It's called "benechill" and can be found using your favorite search engine.

Anywho, I look forward to continuing to learn about CH and wish you all pain free days ahead.

-Scott

I suppose I'll start with a post here...

My name is Barbara and I'm 22 y/o. I started getting abdominal migraines when I was 11. They eventually moved up to my head and 2 or 3 years ago I was informed that they are actually cluster headaches, not migraines. Lucky me. 
I've been on various preventatives (anti-depressants and anti-seizure meds), all which have made me sick. I've tried Imitrex and I got all the side effects and none of the benefits. It was horrid. So now I try to avoid any meds because I'm afriad they will make me sick. I'd rather have a horrible headache than go through another CT Scan!  I had 2 of them within 3 months last year (ugh... barium... i can't drink anything that has that berry taste ever again...)

I'm currently starting another cycle of headaches, they start randomly. I think this one was caused by the weather change lately... And when I'm able to stay still, all that I can really focus on is reading about my headaches... which is how I found this site. I guess reading about them just makes me feel better knowing I'm not the only one with this pain that hates me...

Hello Y'all. I am a newcomer, my name is Donnie, 49yo, live in Barling, AR. After 4 years of misdiagnosis, such as Trigeminal Neuralgia, countless Doctor's and Specialists  I believe I have found the answer. CH came about by reading "Trigeminal Neuralgia, Fighting Back" and by talking with a Health Coach provided by my health insurer. On the opening page of this site I was in tears as I read my story. My journey with CH began in 1993, age 33. At that time I was rushed to an emergency room a couple times. The mysterious ailment disappeared, not to surface for another 10 years. I must state the diagnosis I have at this point in time is a self diagnosis. I went to the Doctors this morning armed with the newly found information from this site. The Doctor prescribed Indomethacin which I suspect may not be the best medicine for my affliction. I talked to the pharmacist about the medication prescribed and am going to try it. I will try anything to end my hell. My thoughts during an attack have been drilling a hole in my face, cutting out what I think is the affected area or suicide. I have been given pain pills (Loricet Plus) which are useless and have thought alcohol works quicker, one shot, one beer. Wow! Have I been wrong. 2 weeks ago after awakening at midnight, I chose the alcohol route after a half hour of pain. I knew I was in for a long one and needed help NOW. The pain got worse and by 1:30am I was dialing 911. I live by myself and 911 seemed like my only recourse. The friggin Emergency was a waste of money and time. They let me sit cowered in a corner for 3 hours before even acknowledging I was there. By the time I got to see the Doctor I could open my right eye and see. The pain is so severe, I go into a strange stage where I the outside world is kinda oblivious to me. Only someone suffering with what I have could understand. The Doctors certainly have not. I could easily write a book on what I have been through. Having one tooth pulled, having another pulled and finally having all my top teeth pulled. I have read books written by others in hopes of getting a correct diagnosis. Nothing I have been prescribed has helped. I can only pray the Indomethacin works. I took the survey online here and answered ALL the questions like a CH suffer would. What a revelation! Why has the Dentist, Gum specialist, Neuralogist's and Doctors not been able to diagnose my condition is beyond me. My CH is episodic and I am slightly past 6 weeks of daily pain and I believe on the downward spiral. I know when I am going to have a night from hell. The smaller attacks I experience earlier on in the day will normally lead to a 4-5 hour attack in the evening. Like clockwork it comes. Normally right before I am ready for bed or after I have slept for an hour or so. I have the false positive attacks where the pain may continue from 5-20 minutes and just as suddenly as it came, it will go away. My worst attack was 15 hours in 2003. With this episode, there have been about 6 of the severe (4-5 hour) attacks. I will stop here, but like I stated earlier, I could write a book about this evil illness. After visiting the Doctor's office this morning with my revelation, I once again walked away a little dismayed. I would have thought he would have had a blood test taken, but he did not. Time will tell if it is truly CH. What brought me here was Sphenopalatine Neuralgia, another self diagnosis after reading about the illness. The symptoms of Sphenopalatine Neuralgia are very close to describing what I have. I am looking for help and guidance and through time, hopefully I can help someone else. Thank you for allowing me to participate.

Donnie

Hello everyone, I’m Maxim. I was diagnosed with migraine at age 12. I thought I knew everything about painful headaches. I guess I didn’t. I’m 30 now. Last January, I started having the most agonizing headaches that I’ve ever felt. Symptoms included swollen eye, redness, and severe tearing of left eye. I felt as though my eye was being perforated by a dagger and was about to explode. My left nasal passage was congested, I had runny nose, and pain in the left side of my nose. I also had pain in the neck, teeth and gums. In some occasions I would feel slightly nauseous. I could feel the pain all over the left side of my face. I noticed that the pain started after napping. Then, I stopped taking naps for no reason. Afterwards, I noticed that the pain would start at around 8:00 pm, and it would come back the next day at the same time, and so on. Some other times, the pain would wake me up from my sleep. I thought I had a sinus infection because my left nasal passage was brutally congested and I was feeling what I thought was pressure on the left side of my forehead and temple. By that time I didn’t know anything about cluster headaches. After two horrendous weeks, I started suspecting that I had some type of brain tumor and was forced to go to the ER. I was there for about 8 hours and that day I had several attacks. They didn’t give me anything for the pain at all, not even an aspirin. Not that an aspirin would have helped me, but it’s the principle that counts. In my desperate attempt to seek help, I was expecting some type of compassion on behalf of the ER doctor, but nothing! The doctor mentioned that she didn’t want to prescribe anything for the pain because she didn’t want to interfere: in case my regular doctor would recommend some other medication. The ER doctor determined that I had a slight infection in my sinuses and gave me a recipe for pills to prevent nausea. She also advised me to contact ASAP my regular doctor. I still have the recipe, I mean, nausea? That’s ridiculous. I had blood work done, a CAT scan, etc, and was sent home. No brain tumor, nothing wrong in blood test results thanks god. Four days later or so, I visited my regular doctor and told her everything about it. She said that it sounded like a case of “Cluster Head.” Nonetheless, I mentioned to her about the pressure symptoms, which I was experiencing and she prescribed an antibiotic for my sinuses, naproxen for mild pain, and propoxyphene if I had severe pain. None of them worked. Two weeks later, the attacks disappeared. After two months, the attacks started again, but this time noticeable more painful and on the right side of my face. I successfully managed at first by taking extremely hot and long showers. The steam would decongest me and suddenly the pain would go away. After two and a half weeks of non-stopping and excruciating pain, I visited my regular doctor once again. I had x-rays done to finally determine if the cause of the pain was a sinus infection and it turned out that it wasn’t. It was a case of cluster headaches. My doctor prescribed Imitrex 100mg and urged me to take it during the onset of the headache. She said that it was ok to combine imitrex with naproxen. After visiting my doctor, I have successfully stopped all attacks on time. I stopped drinking alcohol and I’m currently trying to stop smoking cigarettes. I’m also doing Reiki and I feel that it’s starting to help. It has reduced my stress levels radically. I also started exercising. My sleeping patterns are quite terrible. So, I’m planning on start taking melatonin, but I’m waiting to consult my doctor on that one. I’m speculating here, but I think that what is causing my cluster headaches might be either the fact that I’m a smoker or it is related to my sleeping habits. I noticed that drinking a strong cup of black coffee during the onset of an attack has helped me a lot. I’m currently afraid to go to sleep because I know what may be coming to wake me up. Anyhow, I deeply wish that we all get better.

pieface_49 wrote on Mar 25^th, 2007 at 9:57am:

Good, then WELCOME!!


pieface_49 wrote on Mar 25^th, 2007 at 9:57am:

If this doctor won't work WITH you, and sticks to his erroneous information, dump him.  Get another one.  Don't be afraid to print out things from this site, and give them to your doctor.


pieface_49 wrote on Mar 25^th, 2007 at 9:57am:

Yes, there are some that that has happened to.  Two I can think of, is Charlie and DonnaHar ...  Deej has also been PF for a long time, but that may be due to other factors, not his age and outgrowth of it.


pieface_49 wrote on Mar 25^th, 2007 at 9:57am:

That has happened to me, due to some of the meds I was taking.  I am just to old and senile to remember which ones caused that.


Good luck in your treatment and research!

Chuck

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
       
me and the kids (meeting the blues brothers)
i joined this site because.."every body...needs somebody...someone to love.......
well im tony,my big girls toni, little girl casey, and danny
oops i forgot tracy, hang on a min i will try.
ps i am only interested in making people smile.
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

cheers chuck.
the jonny salute was taken when we went to meet helen....my first meet.
what a lovely woman she is.

Hello all - my name is Kelley.  I am a long time lurker and figured I better sign up one of these days.  I live in Round Rock, Texas.  Woo hoo!  I was diagnosed as having CH back when I was 17 (I'm 32 now).  I have two little boys who want to be neuro doctors, so they can help mommy fix her headaches.  They are 3 and 5.  What ambition!  Anyway, I just wanted to say thanks to you all and the many posts out there.  I have tried lots of things over the years and unfortunately, nothing really works.  Surprise!  Verapamil, Lithium, 02, and recently, Imitrex injections.  Honestly, those were kind of freaky.  I got all hot and weird feeling.  I wouldn't have minded if they actually worked.  Then, I read on the Imitrex paper that those with Raynaud's should proceed with caution.  Hmm.  Oh well, easy decision for me - it didn't work.   

My clusters are hard to "fix" if you will.  The actual cycle lasts about 7 days but returns every 3 weeks.  The length of an actual headache lasts only about 20 minutes.  They pack a punch, so don't let the time fool you.  I resume normal life for about 45 minutes until the next attack hits without fail.  I have got by on Advil, Aleve - you know the usuals.  They may buy me a few PF hours, but it's back as soon as it has a chance.  I hate taking meds of any kind, so I've been researching other ways to help - which brings me to why I am posting today!

A few months ago, I began taking birth control (hubby is fixed, but I wanted to help my darn adult acne).  The first month was decent - got the usual hits.  The second month was unbearable.  I had K8, K9 hits every hour.  Now, how in the heck am I supposed to be a mom with this mess going on?  I couldn't drive any distance without pulling over, etc.  It was horrible.  The BC by the way was called YAZ.  Long story - and this isn't supposed to be about the birth control, but I am mentioning it, because I had to stop it and find relief somewhere.  You aren't supposed to use Aleve, Advil, etc on a long term basis with it.  Great.    

So, I saw MJs posts about the RC Seeds.  I was on the Cbusters website in a heartbeat.  Got the seeds and a pepper mill.  I dosed that night and still had the hits every stinking hour (ALL through the night).  Sleep?  What's that? My husband had to sleep upstairs because of my, um, noises.    I Hadn't slept for almost a month, because they attacked every hour, so I thought, what the heck - one more day won't kill me, right?  I am gald I did it, because the next day, while a bit sleepy (ha ha) my headaches had slowed down.  They came every 90 minutes (hey that's big time for me) and were K5.  Still hurt, still had my head tilted, left eye just tearing away, but a nice break from the unimaginable hits I was getting.  I am due for my usual cycle (3 weeks later) and dosed again on Wednesday night.  So far, I have only felt shadows.  Is this stuff really helping?  Holy smokes.   

Anyway, Had I not seen the posts from MJ (and Chris W) I probably would not have tried it.  Sorry Chris, I was hoping it would work for ya!  I don't know for sure yet if it is indeed working for me, but hey, one week of postponed monster CH is a party for me!!  And so far, the intensity levels have dropped tremendously.  That's a victory in itself.   

Sorry for the long winded post here, but wanted to explain how I got here.  Thanks for all the support you guys offer.  I'll put a picture up soon if I can figure out how.  That's my husband's department.     

Cheers~
Kelley

Hi Tony - thanks!

Yes, I have a wonderful Neurologist.  12 years ago when I came to Austin, I was her only female patient, so she was highly interested in my case.  Unfortunately, I started my family and was unwilling to use long term meds while pregnant, etc.  So, we lost touch until recently.  I have two boys now, so I am DONE.  And yes, I too was CH free during pregnancy.  At least with the first one.  The 2nd one, I wasn't so lucky with 9 week spans. 

Dr. Roy is awesome and will do anything for me.  I tried Oxygen, but my headaches aren't long enough for it to be effective.  People say it aborts within 10 minutes, but by the time I hit 10 minutes, I'm on the down and out side.  Besides, I was running to the mask every 40 minutes trying to catch it before hand and it just wasn't working. 

I would really like to find something to at least interrupt the cycle and help prevent it.  I am not comfortable with taking meds long term (like the verapamil and lithium).  It just scared me - back then, I'd do anything, but I guess my perspective changed a bit after being a mom   So, I am a bit more cautious.

My Dr. in Houston (when I was a teenager) prescribed two 550 mg of Anaprox as needed.  I took that for a long time - completely oblivious to the damage I could have  been doing.  My Neurologist here almost fell on the floor and was surprised I still had a stomach, liver, kidney, etc.  Anyway - getting off the subject there.... I have tried a lot and hope the seeds work (or at least help).

Kelley