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Topic: Who is who here to the newcommers (Read 24259 times) |
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George_J
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Re: Who is who here to the newcommers
« Reply #275 on: Mar 2nd, 2007, 9:58am » |
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on Mar 1st, 2007, 4:22pm, hikerguy wrote:Hello,everyone I'm Chris from Syracuse NY ....(go orange)
I have been episodic for 14 yrs |
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Welcome to the board, Chris. It was a pleasure talking to you in Chat the other night. Hope things are going a bit better for you, and looking forward to hearing more from you.
Best wishes,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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rossybabe
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Re: Who is who here to the newcommers
« Reply #276 on: Mar 2nd, 2007, 11:09am » |
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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!!
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Thanks Lord for giving me CH so I may love and enjoy even more the days I do not have to suffer it...amen.
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MathenyMan
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Re: Who is who here to the newcommers
« Reply #277 on: Mar 2nd, 2007, 4:47pm » |
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Hello guys..I'm relatively new here. My name is Adam Matheny. I live in Sacramento, California. I've had clusters for about 14 years now.I'm episodic, and in cycle right now. I started with em pretty young, which sucks, cause proper dosages weren't available to me until recently. I, however, now am on Verapamil, prednisone, I have some lidocaine, imitrex shots(all out now), and plenty of oxygen. The coctail now, is usually good enough,  I guess, most of the time. But that other 40% of the time is hell. Somehow my cocktail doesn't work on certain days. I dont know if im eating a trigger, smelling a trigger or what. I thought I was pretty careful. Anyway I dont take many pictures of myself, nor do I let others take them of me, due to photogenic akwardness. So I got the only 2 pictures I had. Im the guy in both pictures. The adult girls are my cousins, the little girl is my neice(and our guitars). lol, I wish I had a picture as impressive as the texas lady with the sweet bass, but I guess that'll have to wait until this summer. Anyway PF wishes to all.
P.S. All are welcome to contact me. I love meeting new people, ESP clusterheads, it was just this week I found you all. Before that I was alone. So, hopefully I'll be hearing from tons of new people soon. Perhaps start a group a little closer to home. See yall later!
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What does it feel like? Let me think...Have you ever had something try and eat its way out of your brain? Me either, but I'd imagine it feels something like a CH.
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E-Double
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Re: Who is who here to the newcommers
« Reply #278 on: Mar 2nd, 2007, 7:34pm » |
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Right on Adam!
Always great to put a face to a name.
Wishing you the best and a quick cycle.
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Linda_Howell
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Re: Who is who here to the newcommers
« Reply #279 on: Mar 2nd, 2007, 7:51pm » |
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Hi Adam, I didn't know you lived in Sac. I live in Redding and we have a Calif. chapter of OUCH here if you'd like to come visit us.
http://www.calouch.org/cgi-bin/yabb2/YaBB.pl
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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mbcoon
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First Cycle
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Re: Who is who here to the newcommers
« Reply #280 on: Mar 6th, 2007, 12:27am » |
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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
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Rosybabe
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Re: Who is who here to the newcommers
« Reply #281 on: Mar 6th, 2007, 3:26pm » |
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Hi Bryant!
I am so sorry you get to be one of us!! I do not wish this pain to anyone!!!..
I tried O2 but it did not work for me, I started using it when I was 18 so I do not see what the problem is with you using it at your age, sometimes works, sometimes does not... imitrex do work but yeah it is pricey!! what about Cafergot? it works for me. Maybe your Doctor can give you alternatives less expensive or at least covered by your insurance...
Some people here say that RedBull during the day time works wonders!!
I hope you are avoiding anything that may trigger your CH..beer, smoke, sausage, etc...stay away from them..they like to call the beast over!!
You can try with cold packs on your head when you get the pain and try to sleep whenever you can...
Hope the beast give you some days to recover..you will need them..
I used to have one or two episodes daily while in college and yeah that was horrible!!
Wish you the best!!
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 Believing is just the beginning!
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ndshrubs
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Re: Who is who here to the newcommers
« Reply #282 on: Mar 14th, 2007, 8:24pm » |
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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
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thebbz
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Re: Who is who here to the newcommers
« Reply #283 on: Mar 15th, 2007, 10:32am » |
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Welcome back Scott, you like research? Check out the calouch website, and these,,clusterbusters.com, OUCH.
There are many. Good luck and see ya around.
jb
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blmiller84
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Re: Who is who here to the newcommers
« Reply #284 on: Mar 21st, 2007, 1:42pm » |
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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...
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thebbz
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Re: Who is who here to the newcommers
« Reply #285 on: Mar 21st, 2007, 3:25pm » |
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Welcome and keep reading bmiller. The more you know the better fighter you will be. If you have CH this is the place to be. Get settled in and start a thread to introduce yourself.
all the best
jb
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pieface_49
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Re: Who is who here to the newcommers
« Reply #286 on: Mar 24th, 2007, 2:18pm » |
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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
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ClusterChuck
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Re: Who is who here to the newcommers
« Reply #287 on: Mar 24th, 2007, 4:22pm » |
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Donnie, I hope you find out that you don't belong here. But if you do, this is the best place to be.
Congratulations in the first step, self diagnosis. Now you need to get it confirmed. Have them give you a CAT scan, MRI, and maybe even an MRA, to rule out any other possibilities. There is no definitive test to show CH. The tests are to rule out other problems that could cause like symptoms.
One of the things to push for, if you do have CH, is oxygen. It is one of the cheapest, safest, and most successful abortives out there. BUT, it must be used properly to work. You need a regulator that goes up to 15 LPM (litre per minute), and a non-rebreathing mask, preferably a clustermasx. The clustermasx is new, and if you ask your doctor, or oxygen supplier about it, most likely they will never have heard of it. It is designed and sold by a fellow clusterhead in jolly ole England, and any of us that have tried it, swear by it. It can be purchased, for $25.00 USD from www.clustermasx.com
Other than the clustermasx, your oxygen supplier can get you everything you need. Just make sure they set you up with a regulator that goes up to 15 LPM, and don't let them tell you that they don't make them that go that high, nor that you don't need that much. Your doctor will need to give you a prescription for it.
Welcome aboard, and feel free to ask any questions that you may have. With all the people here, we know more than most medical professionals know about this curse.
Chuck
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Thomas Fuller
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clusterachetarget
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Re: Who is who here to the newcommers
« Reply #288 on: Mar 24th, 2007, 8:02pm » |
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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.
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pieface_49
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Re: Who is who here to the newcommers
« Reply #289 on: Mar 25th, 2007, 9:57am » |
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ClusterChuck,
Unfortunately, I belong here. Actually, I should say fortunately, I belong here. The book "Trigeminal Neuralgia, Fighting Back" talks about CH. The book states unlike TN, CH sufferers typically get more and longer remissions and the problem may eventually go away. Does anyone know of people who this has happened to? I would say that my 10 year period of remission may apply. In my case, it also came back. The way I came across this forum was diagnosing myself with Sphenopalatine Neuralgia. Sphenopalatine Neuralgia has been associated with CH or diagnosed as CH in the past. As the medical profession becomes more educated, the diagnoses become more specific. My diagnosis at this point in time can fit TN-2, Sphenopalatine Neuralgia, CH or Symptomatic Differential Neuralgia (Chronic paroxysmal hemicrania). The Doctors and Neurologists I have seen have no clue what is wrong with me. Right now, it is trial and error. The trial and error or as I would call it, a design of experiments with medication. The indomethacin has had good results so far. At the time I would have had an attack last night, the monster could not come out. I could feel an attack trying to occur, yet it had no steam. Kinda like the little train that couldn't. I knew it was a blessing. I also am on the downward spiral, so I really do not know if it is the meds or the end of my cycle. I have had an MRI and a CT Scan with no results. Tomorrow I go for another MRI.
I walked into the Docs office yesterday armed with information about CH. I was dismayed when he told me the drug of choice for CH was Indomethacin. I had not read that anywhere and only read it is used for chronic migranous neuralgia, what some folks call chronic CH. I was disheartened when the ER let me sit in a corner for 3 hours when it could have been some O2 or a shot of imitrex that took the pain away within 5 minutes. I told the Doctor yesterday my pee stunk and was extremely yellow. I believe my histamine level is high. Why he did not ask for a urinalisis or blood test is beyond me. I am sick and tired of being a piece of meat passed through our defunct medical system. Cha-ching, thank you sir. Why, when the dental hygenist noticed discoloration of my gum, right where the pain is the worst. Why the Neurologist let it go in one ear and out the other is beyond me. Perhaps she did not, and that is why I have an MRI scheduled? The gum specialist had said he had never seen anything like it before and took pictures. Cha-ching, thank you sir. I have been given no choice but to go and find the answers myself. I do have the choice of moving back to Pittsburgh, PA where some of the best Doctors in the country reside and I can probably find help. As time goes by, this decision is becoming more realistic. Thanks for letting me rant . I think being poignant is a side effect of the pain I have been living in for over 6 weeks. I have no problem telling anyone what I think.
Something I notice or have not seen yet is people talking about corticosteroid (nasal spray) usage. I feel as though my condition may have resulted from years of corticosteroid sprays I used. I had to quit taking them because they resulted in an awful bacterium that would not go away in my nasal passage. I think there is the possibility they could have damage my sphenopalatine ganglion. Perhaps the corticosteroid sprays could have caused an imbalance of histamine levels? I need to do more research, but right now I feel my histamine levels have something to do with the pain. This is fairly self evident in my case. My urine was the yellowest and stinkiest during the peak of my cycle. Has anyone else come across this?
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ClusterChuck
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Re: Who is who here to the newcommers
« Reply #290 on: Mar 25th, 2007, 10:34am » |
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on Mar 25th, 2007, 9:57am, pieface_49 wrote:ClusterChuck,
Unfortunately, I belong here. Actually, I should say fortunately, I belong here. |
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Good, then WELCOME!!
on Mar 25th, 2007, 9:57am, pieface_49 wrote:| I was dismayed when he told me the drug of choice for CH was Indomethacin. |
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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.
on Mar 25th, 2007, 9:57am, pieface_49 wrote:| CCH sufferers typically get more and longer remissions and the problem may eventually go away. Does anyone know of people who this has happened to? |
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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.
on Mar 25th, 2007, 9:57am, pieface_49 wrote:| My urine was the yellowest and stinkiest during the peak of my cycle. Has anyone else come across this? |
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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
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Thomas Fuller
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pieface_49
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Re: Who is who here to the newcommers
« Reply #291 on: Mar 25th, 2007, 11:08am » |
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Maxine,
Your description of the onset of the illness is identical to what I experience. The congested side at the onset. I cannot blow that side of my nose for nothing. Then, about 15-20 minutes into the attack, my nose will start running and running and running. It does not stop. I sit there piling up kleenex. Finally the running nasal drainage will subside and the pain as well. My eyesight will come back and pain will quell. This is if I am lucky. I am not lucky all the time and the onset of pain will last 4-5 hours. At about 45 minutes into the pain, I might be able to consider it about a KIP 10. This is when insane thoughts appear such as drilling a hole in my upper cheek bone or cutting out that area. Perhaps punching myself in the face or smacking myself. It sure is comforting to know I am not alone. NO ONE WILL EVER KNOW THE PAIN UNLESS THEY HAVE EXPERIENCED IT! People try to be understanding, but they can't. They can only be empathetic. I hope you have found what I have found and help is there for you. I am trying my best to make that a reality in my case. Knowledge is power and power is knowledge. Alone I cannot do it, but with the help of others and the power of knowledge, we can do it.
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Yorky
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Re: Who is who here to the newcommers
« Reply #292 on: Apr 2nd, 2007, 9:39pm » |
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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.
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present.
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ClusterChuck
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Re: Who is who here to the newcommers
« Reply #293 on: Apr 2nd, 2007, 11:24pm » |
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WOOHOO!!!!!
A Jonny salute !!!
Chuck
(GREAT looking family ya got there!)
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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Yorky
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learn to meditate (or just sit & do nowt)
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Re: Who is who here to the newcommers
« Reply #294 on: Apr 2nd, 2007, 11:30pm » |
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cheers chuck. 
the jonny salute was taken when we went to meet helen....my first meet.
what a lovely woman she is.
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today is a gift.....thats why it is called the
present.
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ClusterChuck
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The BEAST rises again, and again, and again, and .
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Re: Who is who here to the newcommers
« Reply #295 on: Apr 2nd, 2007, 11:37pm » |
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on Apr 2nd, 2007, 11:30pm, Yorky wrote:| what a lovely woman she is. |
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SSSSSSHHHHHH!!! Don't let HER hear ya say that! The damn pushy assed broad has a big enough head!!!
SHEESH!!!
LOL
Chuck
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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kshodges
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Re: Who is who here to the newcommers
« Reply #296 on: Apr 6th, 2007, 11:23am » |
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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
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artonio7
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Re: Who is who here to the newcommers
« Reply #297 on: Apr 6th, 2007, 9:02pm » |
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Hi Kelly,
I'm glad you finally came in and introduced yourself. Sorry that you have to be here but I'm glad you found us.
Do you have a Neurologist? Perhaps you should make an appointment. Don't be afraid to bring plenty of printouts from this site.... Many of the sufferers here have great success with Oxygen at aborting hits. There is a handy link on the left of this page titled Oxygen info.
I hope you find relief soon.
welcome to clusterville,
with warm regards,
Tony
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Hope! http://artonio7.com
CH Pain Calendar Free Download
For artwork
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kshodges
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Re: Who is who here to the newcommers
« Reply #298 on: Apr 6th, 2007, 9:56pm » |
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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
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pieface_49
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Re: Who is who here to the newcommers
« Reply #299 on: Apr 8th, 2007, 10:45am » |
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Hello Kelley,
Welcome to the board and nice to see you posting and not lurking . I too don't want to be in public and have a bad hit. There have been times at work where I left and other times stayed with a hit lasting 40 minutes to an hour. Some of my co-workers have seen and know some of my pain. I do attempt to hide the pain when it happens at work. Trial and error on the meds is not good. My Neuro has been trying trial and error for the past 4 years to no avail. I am out of cycle so I cannot prove/disprove the O2, Red Bull, Melatonin, Benadryl, Triptans and other abortives/preventatives available to help CH sufferers. I do know that when I read the testimonies, http://www.clusterheadaches.com/ finally, finally there were people who would understand me (still debatable) and I knew exactly what they were going through. Are you keeping a diary with the times/durations/kip levels of the hits? Taken the cluster quiz on the left? Taking this info as well as some other CH related info may help your Neuro in their diagnosis. 15 years is a long time with no proper diagnosis.
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When God was passing out stinkers, I thought He said thinkers. I now have a better stinker than a thinker.
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