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Title: A Suffering Newbie... Post by kissmyglass on Jan 19th, 2003, 6:30pm Hi, I'll try to be brief but had to write. Found this site yesterday & feel like I'm home. I'm a 42 year old male. About a year ago I thought I had the worlds worse toothache. Had it pulled & the pain was still there, ripping throught the whole left side of my face. I have this "shadow" or trigger point in my gum in the corner of my mouth. HAd another tooth pulled , didn't work still had attacks.(my attacks are kip 10's and I have them every night between 9 :00 & midnight & they last between an hour & an hour & a half) anyway I had 8 teeth pulled & still the attacks. I now look like this :D only usually frowning. Went to an ENT thinking I had a sinus infection since my left nostrel clogged during my attacks. He gave me CT scan & said everything was fine. Fuckin idiot ...nothing was fine... My Girlfriend searched the web for facial pain & found the trigeminal nerve. I could tell by looking at it that that was the source of my problem. Ate handfuls of excedrin, litterly 20 at a time & chewed half a dozen percocets at a time to stop the pain but as you all know nothing touched it. Went to the Dr. this past Thursday & told her I had a Trigeminal nerve problem. Said maybe I have Trigeminal neuralgia. Been looking at that & it sure sounded close (worse pain known to man etc.) but my face doesn't hurt to touch like the TN sufferers & nobody mentioned a watering eye or stuffed or leaking nostrel (figured that was because the pain was so ridiculous that a watering eye was not worth mentioning. Further searching brought me here, sounds like I'm a clusterhead. Thursday the Dr. gave me Tegratol & I have not had an attack in the past 3 days. YAY! The doc gave me a Neuro appt. but it's not until 3/28 & I'm not sure how long I can take this Tegratol(from what I've read). I really can't believe that Oxygen can help with this mind boggling pain. If the Tegratol stops working, not sure how I will make it through the next 2 months until the Neuro appointment..... Anyway thats my story, thanks for listening & THANKS for this site! Kevin |
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Title: Re: A Suffering Newbie... Post by domm on Jan 19th, 2003, 6:35pm Kiss - welcome to clusterville. Read up. You'll find out all about oxygen and imitrex as abortives and Verapamil as a preventative. You're story is very familiar to most here and its really sad to hear of another who has to go through this horror. I'd be talking to my GP about oxygen and Imitrex if I was you. Good luck domm |
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Title: Re: A Suffering Newbie... Post by Mark C on Jan 19th, 2003, 6:43pm Welcome Kevin, I am sorry to say but it sounds like you may qualify for membership into our "exclusive" club....bummer. Your story is very common, us Clusterheads have a hard time getting respect from the medical community. I hope you get a good Neuro who is CH knowledgeable. Surf this site and the OUCH site for most of the known information about CH.....print the good stuff and take it to your Neuro. If you make him (her) think its their idea your chances are better. Doctors have an ego problem for some reason. Good luck and keep us posted. PFDAN's, Mark |
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Title: Re: A Suffering Newbie... Post by ave on Jan 19th, 2003, 6:46pm Kiss, if you have clusters you are, sadly, welcome here. there is a lot of information if you explore the buttons. I just wondered though - you said tegretol helped you... Usualy Tegretol does NOT help for cluster headaches, but for Trig. neuralgia. I was given Tegretol, & thought it helped. Turned out I didn't have Trig neuralgia, my episode had just stopped. Tegretol did nothing for me when the clusters started up again. So beware! Check out all the info here and take it to your doc, so as to be well armed. Good luck |
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Title: Re: A Suffering Newbie... Post by lonenightowl on Jan 19th, 2003, 7:29pm ...."I really can't believe that Oxygen can help with this mind boggling pain." I remember saying almost the same words myself.That was 16 months ago,O2 and this site literaly saved my life.What have you got to lose by giving it a try?10-15 liters per minute with a non-rebreather mask. Take the cluster quiz,check out the links on the left. Sory you had to come looking for us but WELCOME aboard! grab an oar peace and PFDN BillyJ |
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Title: Re: A Suffering Newbie... Post by BruceD on Jan 19th, 2003, 9:37pm Welcome Kevin and I too am sorry you had to find this site. Like you I'm relatively new to this board but have suffered from CHs for about 13 years or so. I must say that O2 is an absolutely amazing miracle for me. I've only been with my tanks just over a week but the O2 has aborted every single attack (normally 3+ or so a day/night) Usually upon waking up to a k5-6 I would immediately hit a 10 within 5 minutes or so and the HA would last for about 2-21/2 hours. Now I hit the O2 and it holds below an 8 and within about 10-20 minutes things are diminishing and eventually the pain disappears. If you have the opportunity before your neuro apt. give O2 a chance. Afterall, the only thing you have to lose is the pain... |
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Title: Re: A Suffering Newbie... Post by cootie on Jan 19th, 2003, 10:54pm Hello Kevin....yer on the in-for-mation highway now and headed in the rite direction.....good luck !! Pam |
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Title: Re: A Suffering Newbie... Post by rick on Jan 20th, 2003, 3:13am Kevin, Have you thought about trying to find a neuro on your own that could get you in earlier? Or is the neuro that you're preparing to see an experienced headache specialist worth seeing? Many doctors do not seem to understand our sense of urgency in seeking treatment, to say the least. Sorry you are here, but glad you were able to find us. Whether you are diagnosed with clusters or not, I hope you find some peace. I cannot say enough about the value of self education with this condition through use of this site as well as the OUCH website. -R |
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Title: Re: A Suffering Newbie... Post by kissmyglass on Jan 20th, 2003, 8:53pm Thank you all for welcoming me. You are an amazing bunch of people. |
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Title: Re: A Suffering Newbie... Post by hdbngr on Jan 21st, 2003, 11:04am It can be hard to be seen quickly when you are new patient, especially when many of the neuro's are booked months in advance. Let your GP know how INTENSE the pain is, sometimes they will fastrack you. The GP can also prescribe O2 and an abortive (Imitrex, Zomig, DHE, etc.) until you can see the specialist. I was skeptical when I first read about the O2, too. Seems crazy that breathing air can releive pain, but it does help. One other idea is to call the neurologist's office and ask to be placed on their cancellation list. That way, if one of his regular patients cancels a regular appointment, you can take their spot and get in much faster. The staff can then use your later spot to schedule someone else. You have to be able to get there within an hour, usually, but Doc won't lose any appt. time or money, and you can start getting treatment. Good luck, and hang in there. |
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Title: Re: A Suffering Newbie... Post by cootie on Jan 21st, 2003, 11:22am kiss.....like what hdbngr said you should be able ta call a regular doctor for the meds till ya get to a nero....that's what our family doc does. Our nero we first started out with years back demands you go in once or twice a year regualr ta keep on there 'list' if you go back into cycle and need help fast....even tho you still have ta wait a long time. Since he didn't do that (when it was over he didn't want ta be reminded and wouldn't go regular plus insurence gave us shit too and long long drive and take off work deal)....they told us since we didn't follow there program he would have ta go in and pay about $ 250.00 'up front cash' in advance ta get back on the list even tho it would still be about a 3 month or longer wait. Sounds to much like a racket !!! So my doc did him good with what meds he needs ect and has a big interest in all this. We got lucky there. Good luck....Pam |
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Title: Re: A Suffering Newbie... Post by firebrix on Jan 21st, 2003, 5:19pm Greetings kissmyglass. Welcome! It is difficult to believe something as harmless as oxygen will work, yet it does in many cases, when used with a non-rebreather mask. This is most important as with out the non-rebreather, results are not as good. (personal experience) If I may suggest it, please read as much as you can on this site and Ouch (and join) so that you are informed and prepared for the meeting with the neuro. If this neuro doesn't help, please find one who will. Too much time can be spent on trying meds that never work on CH.( more experience) Sorry you had to find us, but really glad you did. These sites have helped us more than anything. :-* firebrix |
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