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Title: NEW TO BOARD JUST DIAGNOSED Post by dino6130 on Aug 13th, 2006, 10:38am HELLO ALL WHEN I WAS A CHILD I HAD TERRIBLE HEADACHES. SO BAD MY PARENTS TOOK ME TO THE DOCTOR WHO ATTACHED ALL THESE WIRES TO MY HEAD. HE SAID I WAS EPELEPTIC. HE GAVE ME SOME MEDS WHICH I TOOK FOR A MONTH, NEVER ONCE HAVE I HAD A SEIZURE. 8 YEARS AGO I STARTED GETTING THE HEADACHES AGAIN. RIGHT BEHIND MY RIGHT EYE, TEARING, RUNNY NOSE, DEBILITATING PAIN WHICH LASTED FOR A MONTH. THEN NO MORE HEADACHES. WELL HERE THEY ARE AGAIN. THIS TIME I DECIDED TO GO SEE MY DOCTOR. SHE DIAGNOSED ME WITH CLUSTER HEADACHES, SO HERE I AM. SHE PRESCRIBED IMITRITREX 100 MG TABLETS. THEY SEEM TO WORK OK WHEN I GET AN ATTACK. ANYBODY ELSE USED IMITRIX ORALLY? LAST NIGHT WAS HORRIBLE. I HAD A DATE WITH A GIRL AND GOT A HEADACHE, I TOOK A PILL AND IT WENT AWAY. LAST NIGHT WHEN I WAS IN BED I GOT TWO MORE WHICH WERE ABSOLUTELY HORRIBLE. I STILL HAVE A SMALL ONE WHICH SEEMS TO HAVE CARRIED OVER FROM LAST NIGHT. I AM GOING TO THE PHARMACY TO GET MY PRESCRIPTION. THE DOCTOR JUST GAVE ME SOME SAMPLES. THANKS FOR READING. LOOK FORWARD TO TALKING WITH ALL OF YOU. |
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Title: Re: NEW TO BOARD JUST DIAGNOSED Post by chewy on Aug 13th, 2006, 10:41am Did the Doc only prescribe the imitrex? You also need a preventative to treat CH. |
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Title: Re: NEW TO BOARD JUST DIAGNOSED Post by dino6130 on Aug 13th, 2006, 10:45am SHE JUST PRESCRIBED THE IMITIRIX. SHE TOLD ME IF IT CONTINUED SHE WOULD PRESCRIBE SOMETHING THAT IS PREVENTITIVE. WHAT MEDS ARE PREVENTITIVE? |
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Title: Re: NEW TO BOARD JUST DIAGNOSED Post by chewy on Aug 13th, 2006, 10:55am First, hit you capital lock button. You need to do some reading up on your condition and what works and what dont. This site has plenty of info and links to help you do that. The preventative that works for me is verapamil at 480 mg per day. |
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Title: Re: NEW TO BOARD JUST DIAGNOSED Post by Charlotte on Aug 13th, 2006, 10:58am I'm sorry you had the need to find us. I have five questions, if you don't mind answering. How long did it take the oral imitrex to work? Did any one rule out seizures? Do you have any other health problems? What is your age now? What are you hoping to find here? Charlotte |
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Title: Re: NEW TO BOARD JUST DIAGNOSED Post by dino6130 on Aug 13th, 2006, 11:09am I have five questions, if you don't mind answering. How long did it take the oral imitrex to work? Did any one rule out seizures? Do you have any other health problems? What is your age now? What are you hoping to find here? It seemed to work quickly. She only gave me 2 pills and I was out of town so I couldn't get the presciption filled until today. The first I took seemed to work within about 15-20 minutes but my made my hands numb. The second time seemed to work in about 15-20 minutes also. Never had a seizure. No other health problems, I am pretty healthy, I work out, try to eat well. I am now 33. I would just like to get some info here from people who are dealing with these headaches as well. I always brushed them off as nothing until recently when they became very severe. I had never even heard of cluster headaches. I thought I may have had something more serious. |
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Title: Re: NEW TO BOARD JUST DIAGNOSED Post by nani on Aug 13th, 2006, 11:18am Hi dino. Welcome and sorry you have to be here. Here's an article about CH meds: http://www.brightok.net/~mnjday/chtherapy.pdf You'll want a preventative, and an abortive that works fast. Imitrex is best used as an injection. The pills take too long to be very effective. Oxygen is the best abortive. Look at the oxygen info link on the left. Now that you've found us, read everything you can here. There are a few alternatives that show promise, like kudzu, taurine and www.clusterbusters.com You can find info on kudzu and taurine on the Medications board. Good luck and pain free wishes, nani |
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Title: Re: NEW TO BOARD JUST DIAGNOSED Post by Charlotte on Aug 13th, 2006, 11:20am There is a lot of info available here. Have you taken the cluser quiz and survey and read the new vistior, medical info, & cluster traits, in the box on the upper left? If you don't have that menu, try going up to the address bar and backspacing until you get to www.clusterheadaches.com and then you can get the side bar menu. The article Nani gave you the link for is a great thing to take to your Dr., also. Charlotte |
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Title: Re: NEW TO BOARD JUST DIAGNOSED Post by kevinpix on Aug 13th, 2006, 11:21am The imitrex shot only takes seconds, just costs more. |
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Title: Re: NEW TO BOARD JUST DIAGNOSED Post by dino6130 on Aug 13th, 2006, 2:47pm Thanks for all the info. Today has been a little better, but I've had a headache all day, just mild behind the right eye. It was worse earlier, I did take a pill of imitrex. I will talk to my doctor about preventatives, because it hasn't stopped. |
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Title: Re: NEW TO BOARD JUST DIAGNOSED Post by BarbaraD on Aug 14th, 2006, 6:31am Dino, The anti-eliptic (msp) meds seem to work as preventatives (topamax among others, but a lot of side effects go with them). Verap seems to be the preventative of choice here. Try some Red Bull energy drink. It seems to get rid of "shadows". And O2 has been the lifesaver of a lot of people here. sorry you had to find us, but glad you did. Now pull up a chair and read everthing on the left side of the board -- there's years of info there. And the most important thing -- remember YOU ARE NOT ALONE. We've all been there - most of us have done that - so we're here for support. Hugs BD |
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Title: Re: NEW TO BOARD JUST DIAGNOSED Post by Mattrf on Aug 14th, 2006, 10:56am Dino Like everyone else said, read, read, read and take as much with you as you can to your doctor, most don’t know that much about cluster headaches since it is a rare condition so you have to educate them. You may want to look for a headache clinic to see someone that specializes in headaches instead of a GP as well. This is a great place for you, you will find no other place with this much information on your condition and no better group of people that understand. Check out the General section as well, it is a great place to vent bitch cry what ever you want and find people that understand better then anyone you know, we have all been there done that and gotten pissed at people that are closest to us for not having a clue of what we are going through. Matt |
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Title: Re: NEW TO BOARD JUST DIAGNOSED Post by Tattoo on Aug 14th, 2006, 4:45pm Im Glad the pill has worked for you . They didnt do much for me other than make me feel like i was going to throw up. The nose spray worked about 75% of the time for 5-6 kip but over that it doesnt touch them at all . The shot works great ! some people dont like the whole needle part but that small pin prick isnt even noticed by me when the beast is goin nuts behind my eye . Im new here too and this site and its links has helped me soooo very much , the people on these boards are great as well Ron |
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Title: Re: NEW TO BOARD JUST DIAGNOSED Post by dino6130 on Aug 14th, 2006, 5:23pm The pill may not work. I am having an attack right now. I've taken the pill witht hese attacks but I don't know if it's the meds or just time that makes it go away. It's still excruciating so I may try something else. Arghhhhhhhhhhhhhhhhhhhhh!!!!!!! |
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Title: Re: NEW TO BOARD JUST DIAGNOSED Post by Mattrf on Aug 14th, 2006, 6:56pm Hang in there don’t let the beast win. PF vibes on the way. Matt |
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Title: Re: NEW TO BOARD JUST DIAGNOSED Post by BB on Aug 15th, 2006, 11:32pm Is it possible to still focus enough to type or use computer during an attack ? [smiley=huh.gif] When my DH has a attack he is on the floor pulling his hair our, banging his head and moaning .. no way can he sit and type ? [smiley=huh.gif] Annette |
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Title: Re: NEW TO BOARD JUST DIAGNOSED Post by dino6130 on Aug 17th, 2006, 9:10am Trust me, I was banging my head, fist, yelling, crying, but I was typing to try and keep my mind off of it. It took a while just to type those few words. |
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Title: Re: NEW TO BOARD JUST DIAGNOSED Post by chopmyheadoff on Aug 17th, 2006, 10:16am did the tablet work for you in the end ?? your gp really should be prescribing you the injections. they are the ONLY thing that is indicated for cluster headache. he can look this up in his prescription book, i cant remember what its called, someone else might. the tabs are meant for migrane sufferers |
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Title: Re: NEW TO BOARD JUST DIAGNOSED Post by dino6130 on Aug 17th, 2006, 2:05pm I am going back to the doctor tomrrow. I think she just generalized the condition and prescribed me the imitrex pills to see what would happen. Obviously not much. What kind of preventatvie meds have people had success with, so that I can suggest them to my doctor? |
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Title: Re: NEW TO BOARD JUST DIAGNOSED Post by Mattrf on Aug 17th, 2006, 3:14pm Verapamil seems to be one of the preventatives that helps most but not all and try and get o2 that one seem to be liked the most with the proper regulator and a non rebriether mask check the links at the left side of your screen.. Matt |
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Title: Re: NEW TO BOARD JUST DIAGNOSED Post by chopmyheadoff on Aug 18th, 2006, 2:25am verapamil worked well for me - doesnt for everybody though. i think this is the best to try first, as it seems to have the least side effects and not be as harsh on the body as some of the other meds. im no doctor though and it may not be suitable for you good luck today chop |
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Title: Re: NEW TO BOARD JUST DIAGNOSED Post by BarbaraD on Aug 18th, 2006, 8:41am I usually try to find something "else" to concentrate on during a hit also. The MB helps. Get you some RED BULL.... Gulp it down and hopefully it will help some. O2 works wonders with a lot of us (the less pills - the better for me at least). Topamax has a lot of side effects for most. I've taken it since 99 and learned to take it at night (the whole dose) and didn't experience the BAD side effects that some have posted. Verap works for about 1/2 the people on this board. It just takes time to find the "right" preventative. Good luck and keep us informed. Hugs BD |
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Title: Re: NEW TO BOARD JUST DIAGNOSED Post by JimH on Aug 18th, 2006, 1:04pm Hi Dino, Oxygen works fabulous for me with a high air flow. The tanks are a pain taking places at times so then I have Imitrex or "Nograine" (100mg Sumatriptan) that I get in Mexico which are less expensive than my co-pay for Imitrex. When I have nothing available, heat or cold seems to help. I either get in a hot shower and let that water blast my head or put a hot sack in the microwave. Or an ice pack on that right eye & neck. Breathing steady and focus on something cheerful, like a prayer helps me as well. I'm new to this sight as well but have been dealing with clusters for 20 years, I'm now 52. As suggested by other veterans, read all the information on this site! You will learn alot and understand more of how to figure out what best works for you. God Bless, Jim |
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Title: Re: NEW TO BOARD JUST DIAGNOSED Post by burnt-toast on Aug 19th, 2006, 8:07am Oxygen, Zoomig, Imitrex, Cafergot, Maxalt are a few common Abortives. Lithium Carbonate, Verapamil, Topamax, Depakote, Prednesone, Cafergot are a few common preventatives These represent only a partial list of potential medications. Do a little online Cluster Headache research and the list of potential medications will grow considerably. CH is a relatively rare disease. Medications currently associated with CH treatment were not developed specifically for treating it. They were developed to treat a variety of other disorders and with time/trial and error were found somewhat effective in treating CH. The potential side effects and warning signs of these and other medications must be understood. Your Pharmacist and some prescription drug research are good sources of important information. I have attached two links that you may find helpful. http://www.drugs.com http://www.nlm.nih.gov/medlineplus/druginformation.html Most find it helpful to prepare for the doctor appointments – due to its rarity CH is often not fully understood or experienced by some primary care physicians and even neurological specialists although neurologists are typically more aware of the condition. From my experience physicians specializing in headache treatment have been the most knowledgeable. Find a good doctor that you can work with. Everyone seems to respond differently and you may find yourself altering medications and schedules frequently until you find the best combination for your specific circumstances. Through the early stages, a working relationship with your doctors is critical for stabilizing your condition and an on-going working relationship important to quickly respond to changes in your condition. Yes, another downside of CH is its apparent capacity to adapt to treatments. What worked yesterday may not be work today, constant maintenance of the disease may be necessary to retain some control over it. Some have found relief from alternatives – these include but are not limited to Melatonin, Kudzu, Psilocybin mushrooms as preventatives. Red Bull, ice packs, cool/cold air, strong coffee/tea, hot showers are a few common alternatives for aborting attacks. The key is to read, research, understand and experiment until you find something that works for you or at least makes your condition more livable. Best wishes, Tom |
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Title: Re: NEW TO BOARD JUST DIAGNOSED Post by kcopelin on Aug 19th, 2006, 8:52am read, read, read. get O2 and non-rebreather mask. If they are unwilling to prescribe at a high flow rate (other than because you have some underlying pulmonary disease) you can buy a regulator on e-bay. If they won't give you a non-rebreather mask-you can get a clustermasx. Listen, you are in the right place. And although I wish you didn't have to be here, I'm glad you found us. Most of us are nice most of the time ::) Welcome home. PFDAN kathy |
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