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Cluster Headache Help and Support >> Getting to Know Ya >> Hello everyone! http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1355526328 Message started by Tish on Dec 14th, 2012 at 6:05pm |
Title: Hello everyone! Post by Tish on Dec 14th, 2012 at 6:05pm
Hi there, I'm Tish, Canadian living in the Interior of British Columbia, I'm a 34yr old mother of a 3yr old boy, a step-mother to a 9yr old girl, married and finally have an appointment with a neurologist next week.
I've taken countless quizzes, including the one on this awesome site, and everything seems to point to Cluster headaches rather than migraine. There's just a few key things that seem to make me wonder... The evil gremlin that lives on the one side of my head, who wakes me up in the middle of the night (most often), can last for hours upon hours. The pain often doesn't go away as suddenly as I have heard they are supposed to with "clusters". Normally, only narcotic pain killers (a lot of them) will reduce the pain enough for me to be able to calm the bleep down. I'm pacing, rocking, smashing my head, all of it. I want to lunge at any nurse or doctor that tells me to "just lie down and breathe." :-? I rarely go to the ER (I live in a rural area so it's an hour long trip one way anyway) because of this as the sheer panic state that I'm in and dismissing classic migraine medicines makes me appear like a drug seeking lunatic anyway. :D I've done headache diaries for years. I've tried Imitrex and other migraine meds (they don't normally work at all - some cause panic attacks), blood pressure medication as a preventive (get too low of a BP then), amitriptaline (sp?) which has awful side effects on its own, Maxalt wafers (joke), yada yada. If another doctor tells me to take a combination of extra-strength Tylenol and Advil I'm going to slap him/her. Nothing like putting on a bandaid on a gaping bullet wound ::) . The other thing about my 'situation' is that my headaches don't seem to come as frequently as many of you describe. I'll go through phases where I'll get 10 of them a month for two or three months, then none for five months. Or sometimes I'll just get ONE in that five month break. *shrugs*. But all the other questions in those quizzes, all clearly point to cluster. They've been so bad that if I'm around people that don't know what the hell (such as being in a hotel out of town for business and asking the front desk to call me a cab at 3am - not being able to speak clearly) they call an ambulance thinking I'm having a stroke. Talk about embarrassment on top of the pain. Then I'm in the ambulance and they call for advanced life support because my BP is plummetting and then skyrocketing within a 60 sec time frame - slurring words, etc. etc. You all seem to know the drill. So my question to you all is this: I've seen quite a few doctors (GP's and ER doctors) all who seem to want to start from scratch (headache diaries, BP meds, Migraine Rx, etc), and either tell me to take Tylenol and go and lie down in a dark room ( >:( ) or look at me like I'm seeking when I ask for something stronger (Dilaudid, Morphine, Demerol, whatever). Nothing seems to 'prevent' these things per say so... to me, it's only about treating "the beast" once it decides to prey on me. What questions, or things in particular should I be concentrating on with my very limited time with this specialist? Edited to add: Oh, I should mention that I haven't been formally diagnosed with either Migraine or Cluster. I've had one ER doctor mention to me that he didn't think the headache I was suffering was migraine; that it sounded more like a "cluster headache" which is what prompted me to do look it up as I had never heard of it. That was a few years ago. Since then, I've mentioned the possibility of Cluster vs. Migraine to my doctor (and follow up doctors) and none of them seem to be too interested in exploring "what" and just keep throwing the same old same old treatments at me (Maxalt, Imitrex, Amitriptiline, some throw T-3's at me...) I've never even heard of O2 being a possible treatment. |
Title: Re: Hello everyone! Post by Mike NZ on Dec 14th, 2012 at 7:43pm
Hi Tish and welcome
Hopefully the neuro will be able to make sense of everything and work out what type of headache you have or what the cause is as it might not be a headache. Whilst what you describe sounds a lot like CH, it's possible for other headache types or even other causes to give very similar symptoms, which is why we ask people to see a headache specialist to get a definitive diagnosis. In preparing for your appointment I'd write down a list of questions you want to ask, with space for you to write some notes as this ensures that you have covered everything you want to ask. Make some notes on what your symptoms are, what the pain is like, etc. Again you'll be asked all this so it is to help you remember as much as possible. You mentioned you'd taken imitrex. Was this the tablet form? This doesn't really work too well with CH, however the injectable form works really well, killing off a CH in about 5 minutes. For oxygen, have a look at the link on the left and you'll be an expert in no time. Hope this helps... |
Title: Re: Hello everyone! Post by Linda_Howell on Dec 14th, 2012 at 9:11pm
Welcome Tish,
Quote:
If you have ever talked to a person with Migraines or read about them you will realize that what you just described above is NOT Migraines. For a Migrainer to rock, pace, bang their head...well they will tell you that is something they would never, ever do. That said: Narcotic paun killers are a BIG NO-NO arould here for clusters. The duration of our cyclic attacks would make them a bigger problem with addiction since it takes months to go through a cycle. ALSO.. it has been reported here with ever greater consistancy thru the years that narcotics have not helped and in fact...prolonged a cycle and in fact..caused rebound headaches from hell. While realizing that you live in a rural area, it just might be worth your while to drive to a bigger city to see a competant headache specialist. You shouldn't have to suffer like this just because you live far away from a big town. Before you try to see anyone however...please, please, please famialize yourself with CH by rading around here. Start with the ,links to the left. The more you know...the better you will be treated. Knowledge is power around here. Ask questions here and know that we will help you through this. O.K.? Linda |
Title: Re: Hello everyone! Post by Linda_Howell on Dec 14th, 2012 at 9:15pm
BTW.. we have several Canadians here that can help you. You live in BC and I can think of at least 2 who live in your area.
Ill try to contact them and steer them to this post. |
Title: Re: Hello everyone! Post by Tish on Dec 16th, 2012 at 1:19am
I could cry I'm so thankful for your time that each of you have given to respond to my rambling. It's so utterly relieving to know I can talk about my 'headaches' and know that no one who reads my complaining, dismisses the pain like people who don't suffer from severe headache issues. I've always said that unless you suffer from either cluster headaches or severe migraine, it's impossible to truly empathize. Kind of like a male obstetrician trying to grasp exactly what childbirth feels like, or a woman understanding the pain a man feels when kicked in the nuts. :D Sure, compassion may be given, but understanding is impossible. So, thank you sincerely.
So narcotics are a no-no? I can totally see that when I read that many cluster sufferers have cycles that result in numerous episodes a day for weeks. That makes a lot of sense then. But for me, since I don't seem to get them AS frequently as that (thank goodness!) and because mine always last for hours upon hours... I just can't handle the pain for that long. If I have a narcotic pain killer in the house, then I only take them as a last resort and not for every episode. But, when it gets to the point where I'm fantasing about ending it all, they can at least get me off that proverbial ledge. I've been given many 'migraine' meds via IV, including Imitrex. I had a horrible reaction to the Imitrex and another kind (can't remember the name); a severe panic attack where I wound up having to be sedated to calm me down. Which was AWFUL because the sedation made me soooo tired, but because the pain was still there, I couldn't succumb to the sleep my body wanted in response to the medication. It was absolute TORTURE. I'm really interested in oxygen therapy though. I had no idea that was an option. I will definately discuss that with the Neuro next week. Thank you all again. I"m looking forward to getting to know you all. |
Title: Re: Hello everyone! Post by Brew on Dec 16th, 2012 at 10:43am
The most important thing for you at your neuro appointment is to insist on an MRI of your noggin so anything more nefarious can be ruled out.
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