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Topic: No One Believes Me.... (Read 2549 times) |
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Carolinagirl
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No One Believes Me....
« on: May 2nd, 2006, 7:38pm » |
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Hi Everyone, I'm new here. I've had cluster headaches for over 13 years now. I didn't know that is what they were until about 5 years ago. I was always told they were migraines, until a doctor actually saw me in the throws of a bad one. He called out the name cluster headache and told me I was the first woman he had seen with one. Imitrex was my salvation for years. It worked great, but lately it has not been doing the trick. Today I went back to my internist. I don't think he has a clue as to what a cluster headache is. I mean he tries to understand and all, but he really doesn't get it! He asked me what I wanted, what medication "did I find on the Internet." I just don't know what to say think or do anymore. I am in the middle of a cluster season right now, that's what I call the 3 month period I get them for. Anyhow I am expecting to wake up any day now with that familiar pain. I've had 9 such nights in the last 6 weeks. The doctor offered me Topomax, Relpax, Inderal, Verapamil, Flova and host of other drugs. I want healing! I took the prescriptions for Verapamil and Flova. I fear it will be more money down the drain. I am really dreading this next attack and am thankful that I found this site. I'll try not to vent so much but rather sit back and hopefully gain some knowledge from all of you!
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E-Double
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Re: No One Believes Me....
« Reply #1 on: May 2nd, 2006, 7:56pm » |
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This is a great resource to know like the back of your hand...print it out and give it to the doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
I have used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=medsarchive2 005;action=display;num=1120904753
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall. (Maybe I should start folowing my own advice again hahahaha!)
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Like I said we are all different.
Best wishes, good luck & stay as positive as you can!!!!
Eric
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Jonny
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Re: No One Believes Me....
« Reply #2 on: May 2nd, 2006, 8:06pm » |
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on May 2nd, 2006, 7:38pm, Carolinagirl wrote:| I've had 9 such nights in the last 6 weeks. |
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Do you mean you have had 9 HA's in six weeks?
If so, you are lucky.
Good luck....hope you find what you need!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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Kris_in_SJ
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Re: No One Believes Me....
« Reply #3 on: May 2nd, 2006, 8:07pm » |
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Welcome,
Eric gave you all of it (good job as usual EE). Follow his links, print them out and get thee to a headache specialist. Meantime, to get you through till then, share the info with your internist. At least you can get a script for Oxygen which helps many here.
Keep us informed. Hugs,
Kris
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Carolinagirl
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Re: No One Believes Me....
« Reply #4 on: May 2nd, 2006, 8:20pm » |
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Thanks for the quick responses. I am already printing Eric information off. I am going to drop a copy by the doctor's office this week. I am also going to look into getting some Melatonin, I've got to stop by the drugstore tomorrow anyway to get the new meds. I wanted to ask the doctor about the oxygen today and simply forgot. I guess I should mention that when I drop off the information. I know he'll prescribe it.
To further clarify what I said earlier about the 9 headaches. Those were 9 days/night of headaches. Mine usually last for 3-4 hours ease up a bit, then come back on strong. The cycle usually lasts for 24 hours. Then I'm just wiped out. My neck usually hurts, before, during and up to 3 days after an attack. Its hurting now, that is how I know another headache is iminent. I get them all year round but have the worst bouts from March thru June and Sept. thru Dec.
Some times I think the waiting is the hardest part....then the thing hits! I do all things I saw you guys testify too on the website and in posts. I bang my head, press on my eyeball and beg God to just let me die. I sometimes take too much medicine that I know is not going to work and end up sick to my stomach on top of it all. I told the doctor this today and if he didn't know me better he probably would have thought I was crazy.
Anyhow one question for you guys.....do you get incredibly hungry when the headaches are over? I find myself famished the day after a headache and always thought this was unusual.
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Charlotte
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Re: No One Believes Me....
« Reply #5 on: May 2nd, 2006, 8:29pm » |
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Sometimes I get very hungry.
Anyway, Inderal might cut down your pain level by 20% or so but if you have a relationship, avoid it because it makes one's libido disappear.
I just started taking 5 mg Paxil. It raises my pain tolerance about 20%. It be better to take it off the top but I'm happy to get rid of 20% anywhere.
I'm reading about Kudzu. A lot of people here have had encouraging results with it.
Good luck.
Charlotte
ps I'm sorry you're taking too much medicine that doesn't work. It is very hard waiting.
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| « Last Edit: May 2nd, 2006, 8:57pm by Charlotte » |
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BarbaraD
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Re: No One Believes Me....
« Reply #6 on: May 2nd, 2006, 8:44pm » |
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Try Black Coffee or Red Bull at the FIRST sign of the Headache -- that along with O2 will sometimes abort them... (at least for me). The caffiene is a vaso constrictor....
I ditto the Melatonin. But ya gotta stick with it long enough for it to get in your system. I got off it twice before I stuck with it the third time and lo and behold it worked the third time. Am still on it and sleeping thru the night like a baby. Just don't lay there when you wake up in the mornings - get up and get to the coffee pot immediately (at least I know to do that cause I wake with a shadow of things to come if I don't stop it right then).
Be sure to get the right mask for the O2. The nose thingy don't work -- get a non-rebreather mask. And make sure the O2 regulator is at least 15 liters.
let us know how you're doing.....
Hugs BD
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JohnM
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Re: No One Believes Me....
« Reply #7 on: May 3rd, 2006, 8:15am » |
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Carolinagirl
You mention that Imitrex always worked in the past for you. Were you using the pills, nasal spray, or the injections?
The injections work really well for lots of people here, but the pills or nasal spray is less effective for many.
From your description of 9 CH episodes in 6 weeks lasting 4 hours then easing up and then coming back over a 24 hour period sounds like you might be suffering from Cluster Migraines? In general CH sufferers seems to get 2 or many more CH attacks most days for 6-12 weeks
I get both CH and Migraine
My CH attacks last 1 to 3 hours and then suddenly vanish for a few hours of totally PF time then just as suddenly start again like clockwork 2am, 6am 11 am 2pm 6pm, 11pm. I also get "shadows" which is like low level annoying CH pain/effects without the excrutiating pain, especially when my cycle has been going for many weeks.
My Migraines can last all day or even several days. The Migraine pain ebbs and flows throughout the day from unbearable (just the same as CH!) and sometimes vomit inducing to just about tolerable, and I also sometimes get a stiff sore neck from all the tension.
Both types respond within 10 minutes to the IMITREX INJECTION.
It might also be worth logging your daily headache patterns in a diary to help your Dr assess the best treatment.
John
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Carolinagirl
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Re: No One Believes Me....
« Reply #8 on: May 3rd, 2006, 7:24pm » |
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Thanks to all of you for all your responses! You guys are sending me off on all kinds of new Internet searchs. I am going to try the melatonin it can't hurt. I am willing to try anything at this point. I spoke to a doctor I work for today about the oxygen and he said I might have success with it, but my insurance most likely will not cover it, so I guess I need to find out the cost. Where do you get the mask you speak of?
Cluster Migraines? I've heard the term but can't seem to find a site that differentiates it in a way I understand. When I get a headache I sometimes know ahead if time, as my neck starts to ache the day before, sometimes it doesn't. Then I will usually awaken between 4:30 and 5:30 and it feels like someone is jabbing an icepick in my left eye. At this point I can't think straight. I keep my Imitrex injection next to the bed and usually my husband realizes whats happening and will either give me a shot or get me to do it. Sometimes I fight it, I don't know why, it must be because I'm in so much pain I can't think straight. If the shot works it works quickly. If not the pain persists. Like I said an icepick is the best way I can describe it, like someone is jamming it in my eye, twisting it and pulling it out and jamming it back in again. Always on the left side. My eye tears and swells. My nose runs. After the initial shock I can't sit still. I cannot lay down as its worse. I try to sit up. I like there to be some noise in the background...tv...radio...something. Sometimes I end up going to the doctor's office, I hate doing this. They give me demerol which does nothing to the headache, but about an hour afterwards I am able to fall asleep. Its not a good sleep but I sleep until the next wave hits and it wakes me up. The whole thing starts over again. I can't sit still, I pace the room, bang my head...whatever until I can fall asleep again. As I am sure you know it sucks. If what is happening to me is not a cluster headache I cannot imagine how you all make it through. I am thankful in knowing that in 24 hours it will be over until the next one hits, which in my case can be a week to a month. I have in the past recorded it all in a diary. I can sometimes predict when they will come, seasonal and time changes. I have also noticed a pattern in relationship to barometric pressure.
One of you mentioned Paxil. I have not taken it but have tried Lexapro, Celexa and Zoloft. They induced a headache. It seems anything I take that messes with the brains chemistry causes me to get one, including red wine. I can't even finish a glass without one setting in.
Thanks for all your help and maybe someday I will be as knowledgeable as you guys and can help someone else!
Nancy
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Charlotte
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Re: No One Believes Me....
« Reply #9 on: May 3rd, 2006, 8:11pm » |
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That was me who said Paxil. It just happens to work that way for me in a low dose. If you already know that kind of thing makes a headache, then avoid it like the plague.
Clusters and migraines are two different headaches but many of us get both.
Good luck. Do lots of reading.
Charlotte
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Lynn91
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Re: No One Believes Me....
« Reply #10 on: May 4th, 2006, 1:01pm » |
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When I told the doctor it is cluster headaches - I was accused of drug seeking, being a hypochondriac, being asked if I am depressed, if I am pregnant, that is is perimenopause or menopause (I am almost 50). I cannot!! get prescription meds - no one will prescribe - so the pain is making me very depressed - because unless you have had it - you cannot understand it! This attitude of doctors is making me so incredibly angry! I actually rarely go to a doctor - I am the tough it out kind of person - I do not want to go from doctor to doctor while they perform pregnancy tests, and such - because I am just trying to get attention! Not to mention I cannot afford to keep being laughed at and poo poohed by doctors.
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seasonalboomer
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Re: No One Believes Me....
« Reply #11 on: May 4th, 2006, 1:40pm » |
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on May 4th, 2006, 1:01pm, Lynn91 wrote:| When I told the doctor it is cluster headaches - I was accused of drug seeking, being a hypochondriac, being asked if I am depressed, if I am pregnant, that is is perimenopause or menopause (I am almost 50). I cannot!! get prescription meds - no one will prescribe - so the pain is making me very depressed - because unless you have had it - you cannot understand it! This attitude of doctors is making me so incredibly angry! I actually rarely go to a doctor - I am the tough it out kind of person - I do not want to go from doctor to doctor while they perform pregnancy tests, and such - because I am just trying to get attention! Not to mention I cannot afford to keep being laughed at and poo poohed by doctors. |
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Go to a reputable nuerologist if you beieve you have CH. Also, since pain-killers are very rarely of much use at all for CH, the idea that anyone would be looking for pain-killers for CH may tip off a doctor as an issue. The prescription meds used for CH are not the kind that any of us really would want to abuse anyway. If you go to a GP and ask for anything for the pain they're gonig to give you the look -- so go to a neurologist.
Scott
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Cendie
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Re: No One Believes Me....
« Reply #12 on: May 6th, 2006, 11:52am » |
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Hey Carolina, I'm in carolina too, the western nc part.
I have migraine and cluster, the difference between the two is the stabbing, and what you do when it hurts. I live with and manage migraine, there is no managing cluster, it owns you. Cluster is so utterly different in intensity. Cluster is frantic, where migraine requires calm.
With migraine I can be still, and that training, has helped a little bit in the lesser cluster attacks, Sometimes I can breathe through the little ones, but normal to bad ones make ya move, shake, pace, bang, scream, go crazy, and when they're over, there's exhaustion, and maybe some anger and self pity too.
I think the the term "Cluster Migraine" is a misnomer. These are two very different animals. I believe there is a relationship between the two, the scientists just haven't figured it out yet. I was reading posts about heredity and cluster, and while most ppl that posted didn't have a family history of cluster, there was usually a family member with migraine.
I used to think my cycles were caused by an underlying migraine that was spawning the clusters, now I think it's the other way around. For a person who is prone to migraine, the stress and anxiety of dealing with cluster will bring on migraines, worrying about when the cycle will start, worrying when the next one will hit, how bad it will be, what event/date you'll have to cancel next, worrying about meds, when the cycle will end, etc.
Hope that helps to clarify. Good Luck =)
Cendie
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chewy
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Re: No One Believes Me....
« Reply #13 on: May 6th, 2006, 12:57pm » |
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Quote:| there is no managing cluster, it owns you. |
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Absolutely and positively false!
You need to read up before making statements like that.
There are many ways to manage clusters.
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| « Last Edit: May 6th, 2006, 12:57pm by chewy » |
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Jonny
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Re: No One Believes Me....
« Reply #14 on: May 6th, 2006, 1:16pm » |
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on May 6th, 2006, 11:52am, Cendie wrote:| there is no managing cluster, it owns you. Cluster is so utterly different in intensity. |
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That is totally uninformed bullshit....if that were the case how do you think I lived through 30 years chronic, huh?
I managed it!!!...thats how 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Cendie
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Re: No One Believes Me....
« Reply #15 on: May 6th, 2006, 1:38pm » |
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Semantics perhaps? Manage: To direct or control the use of; handle.
Maybe it's just me, haven't found that magic bullet to MANAGE it all. You think that's why I am here? Just trying to hang on til the demon DECIDES to go away, I don't decide when it goes away, IT decides. I am not in control of it, IT is in control of me, IT decides what I take and when I take it, IT decides when and how I sleep, IT decides when and what I eat, IT decides whether or not I can keep my plans, IT decides... who are you kidding.. cluster.. managable... yeah right. Nothing like a positive attitude to rain on reality.
Just responding to a post, not interested in being chastised about my correct use of grammar.
Cheers
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chewy
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Re: No One Believes Me....
« Reply #16 on: May 6th, 2006, 5:07pm » |
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Quote:| I am not in control of it |
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Then thats your choice.
Dont be insuating that there are no choices because there are. Plenty of them and all successful to manage CH to one degree or another.
You obviously have a lot of reading and learning to do about clusters. Its all right here on this site. Take some time and read a little.
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BarbaraD
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Re: No One Believes Me....
« Reply #17 on: May 6th, 2006, 5:51pm » |
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Cendie,
sorry you're hurting, but Jonny and Don are chronic and so am I. We had to learn to live with CH so we're a little touchy about managing them. We all live a "fairly" normal life with CH, but it wasn't an overnight thing. We had to 'decide" to live with them.
Episodics, in a way, have it harder because they only hit periodically. Us chronics get used to (if there's any getting used to being in pain) the hits and learn to deal with them in the best way we can. We learn what works for us (and everyone has their own magic bullet to deal with these things).
What we're trying to say is, it takes a lot of trial and error to find something that works for YOU, but most of us have been thru years of trying different things until we hit on the "right" something. And there's no guarantee that tomorrow our magic bullet will still be working.
Wishing you PFDAN
Hugs BD
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chewy
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Re: No One Believes Me....
« Reply #18 on: May 6th, 2006, 5:56pm » |
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Quote:| Episodics, in a way, have it harder because they only hit periodically |
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Actually Barb I have always been episodic. 30 years worth and I manage them well.
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BarbaraD
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Re: No One Believes Me....
« Reply #19 on: May 6th, 2006, 5:57pm » |
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Sorry Don, thought you were chronic -- guess it's because you're such a grouch all the time 
Love ya anyhow.....
Hugs BD
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chewy
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Re: No One Believes Me....
« Reply #20 on: May 6th, 2006, 9:55pm » |
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Quote:guess it's because you're such a grouch all the time
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LMAO! The ex Property Manager where I work used to call me "crabby ball sack".
I liked her. 
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Cendie
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Re: No One Believes Me....
« Reply #21 on: May 6th, 2006, 11:10pm » |
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on May 6th, 2006, 5:07pm, chewy wrote:
Then thats your choice.
Dont be insuating that there are no choices because there are. Plenty of them and all successful to manage CH to one degree or another. |
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Yeah... ITS ALL MY CHOICE.... I CHOOSE CLUSTER....
I LOVE IT.. OH BABY.. HIT ME ONE MORE TIME. OH YEAH, HARDER, MORE, I WANNA SCREAM.
I never said anything about choices, never insinuated there weren't choices, hell, I'm on several different choices all day long, I've been on every choice they've handed me for over 10 years. These "choices" don't give me my life back, don't do damned thing for my waning sanity. Have you ever seen pain in color?!? Where this "hot poker" analogy is actually many, too many to count, hot pokers that hit around your eye simultaneously, randomly, rhythmically, and most importantly frantically.. each one is a different color. It's quite the show. Haven't found a way to manage that, but I'm sure the "next" $20 pill will be the one, I'm keeping my options open!!
I don't need the stress of some self-righteous bitch to chastise me. Perhaps your condition is such that your life isn't affected by it. So go on and manage yourself, everything is smiles, sunshine and puppydogs in clusterland.
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chewy
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Re: No One Believes Me....
« Reply #22 on: May 6th, 2006, 11:15pm » |
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Quote:| I don't need the stress of some self-righteous bitch to chastise me. |
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Nope. So you should shut the fuck up and read for awhile.
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mynm156
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Re: No One Believes Me....
« Reply #23 on: May 7th, 2006, 8:49am » |
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on May 4th, 2006, 1:01pm, Lynn91 wrote:| When I told the doctor it is cluster headaches - I was accused of drug seeking |
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Oh YEAH Imitrex and Verapimil are such GREAT highs! I Sure cant get enough of them!
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CrystalAnn
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Re: No One Believes Me....
« Reply #24 on: May 7th, 2006, 8:29pm » |
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RE: When I told the doctor it is cluster headaches - I was accused of drug seeking
I have been there!! 
I have had a few Doctors ask me what was my drug of choice and when I say Imitrex wow! It seems as if they shut right up!!
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| « Last Edit: May 7th, 2006, 8:50pm by CrystalAnn » |
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