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Topic: WELCOME! (Read 49288 times) |
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turfman
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Re: WELCOME!
« Reply #250 on: Aug 13th, 2007, 8:19pm » |
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I have a script for sansert (sp?) but haven't used it before so don't know...... I am curious about the Oxygen thing, it seems to be high on many peoples list.
Yeah the diagnosis took a long time but the health care system up here does leave a bit to be desired. It took over six months to get a neurologist referral.
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barry_sword
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Re: WELCOME!
« Reply #251 on: Aug 13th, 2007, 11:37pm » |
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Hi turfman, sorry you are here. There is a ton of help and info here to help deal with the beast. Check out the o2 info to your left. IT WORKS!! 
Barry
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Putter
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Re: WELCOME!
« Reply #252 on: Aug 21st, 2007, 9:35pm » |
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Hi Turfman,
If you are willing to travel and can ask your family doctor for a referal, Dr Shapero in Markham is a very helpful doctor. The office is called: the Markham Headache and Pain Treatment Centre.
I use verapamil as a preventative and so far it is going well. I also use O2.
Good luck, from a fellow Canadian,
Leanne
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tdow
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Re: WELCOME!
« Reply #253 on: Aug 22nd, 2007, 1:48pm » |
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I am back with a new cycle. I had the worst one ever last Friday...Felt like a electric transformer was in my head right behind my left eye.....
I had tried the riddlin factor and it broke the last cycle...
I had to stop taking it because of how much weight I lost...
So I just ate a imitrex and am ready for phaze 2 of finding a cure...
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Tom
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Guiseppi
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Re: WELCOME!
« Reply #254 on: Aug 26th, 2007, 2:05pm » |
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Welcome to the board, the bad news is there is still no cure. The good news is there are many options that'll help you manage these things.
You need a preventative, something you take that reduces the frequency and the intensity of the attacks, some of the more common options, verapamil, lithium and topomax. By themselves or in combo they provide relief for many.
Then an abortive strategy. DEMAND OXYGEN! It should be your first line abortive, no side effects, cheap and for me will abort in less then 10 minutes. I save imkitrex for only the rare occasion when 02 doesn't stop it.
Welcome to the board, hoping your cycle is a short one.
Guiseppi
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AVN
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Re: WELCOME!
« Reply #255 on: Sep 27th, 2007, 5:48pm » |
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Hi All,
This is my first post.
I first remember getting clusters around the age of 28 (about 7 years ago). The pain usually presents itself with severe sensitivity to all external senses, particularly light and noise. Likewise, I seem to get nausea, but still tend to attribute that to the significant mucus flow into my stomach during a cluster. The pains usually start in late afternoon and turn on and off through the night, however todays started about 10am, signaling a particularly bad day... I went home at noon.
Of course, in my early days with this condition I kept asking doctors about it and they kept telling me it was sinus (because of the congestion and seasonality of it). The allergy drugs never seemed to work, but was usually able to get a little relief with sudafed and laying on my side with the effected side pointing up. This certainly was no fix, but had lessened severity.
Finally, a few months ago, I came across an article about headaches and first read about clusters. I went to my doctor and demanded that I see a headache specialist. After he argued that it was just a sinus headache for another 5 minutes, he ceded and gave me the referral. Last month, I finally saw my neurologist which diagnosed cluster, and gave me imitrex 100MG tabs (samples) for arrestors and verapamil for preventative. I have just started my last cycle a couple of days ago (just after equinox) and am very impressed with the imitrex. I haven't seen any relief with the verapamil, but I understand that takes a little time.
I have heard a lot about O2, but am reluctant because I travel a lot and cannot imagine lugging such an item onto planes (is this even allowed)?
A couple of questions for the crowd:
1) Do people ever go into complete remission? Or is this likely an issue I will deal with for life?
2) I have read through many of the boards, but haven't seen anything substantive about episodic becoming chronic from prescription drug use. If there is sound evidence, can you please share?
Here is hoping for relief for us all!
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Guiseppi
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Re: WELCOME!
« Reply #256 on: Sep 28th, 2007, 12:44pm » |
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Howdy AVN! A couple of things.......it is hard to travel with oxygen but not impossible. And even if you just keep the 02 at home for the at home hits it's well worth the investment. Going on 30 years battling these things and it's still my first line abortive.
Verapamil takes about 2 weeks to ramp up and most people require a dose higher then docs are comfortable with. 480 a day tends to be midline with some going into the 960 mg a day range. Work with your doc as this isn't a dosage change you would undertake without his monitoring you.
I haven't seen anything posted by our resident docs and researchers that indicate prescription meds cause people to got from episodic to chronic, but many have posted that they feel imitrex injectables have extended the length of their cycles. There haven't been any studies done on that just the opinion of some who have tried it and thought their cycles went longer.
Yes sometimes they just go away. Jonny was chronic forever and woke up one day they were gone. Sailpappy is pushing a hundred years old......well maybe not but danged close...and they still haven't left him.
Welcome to the board, jump in with both feet, read everything and let us know how you progress.
Guiseppi
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AVN
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Re: WELCOME!
« Reply #257 on: Sep 28th, 2007, 3:44pm » |
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Thanks for the information Guiseppi.
I tried a Maxalt today since I ran out of samples on the imitrex, and to my surprise it worked as well.
I will see how my first properly medicated cycle ends out and see about what is truly necessary for me. In the past, my cycles have only lasted 1-2 weeks, so I may not need the verapimil anyway.
-Andy (AVN)
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DennisM1045
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Re: WELCOME!
« Reply #258 on: Oct 6th, 2007, 4:53pm » |
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Hi Andy,
Another trick for travel is Frovatriptan. Helen suggested this to me. While I haven't had the chance to try it yet it is supposed to keep the beast at bay for 12 to 20 hours while you get where your going. You can't use it within 24 hours of another triptan (like Imitrex).
She suggested it after I posted that I ALWAYS get hit when traveling when in cycle about an hour after stepping off the plane. You can take it twice in 24 hours.
You can work with your O2 supplier to have an e-tank or two waiting at your hotel. Traveling with Oxygen isn't simple but can be done with a little planning.
Hope this helps and your cycle is a short one...
-Dennis-
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kincorransw
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Re: WELCOME!
« Reply #259 on: Nov 21st, 2007, 11:45pm » |
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Hello. . .
I'm new to this board and would like to introduce myself. My name is Shannon.
I don't get all the abbreviations so please don't expect me to post them.
I have had cluster headaches for about 6 years now. At first I thought I had an abcessed tooth but the dentist told me to see a doctor. Saw a doctor, had an MRI ( I already have an arachnoid cyst on my brain so am used to the MRI routine). They found polyps in my nose and sinus cavities so they put me on Vicodin for the pain.
When I moved to Las Vegas I found a new doctor who told me I have Trigeminal Neuralgia. He, too, put me on Vicodin.
It doesn't hurt to brush my teeth, or any of the other symptoms of TN (wow, I used an abbreviation!). It wasn't until I switched doctors, and he asked the RIGHT questions, that I found out I have cluster headaches. And have for SIX FREAKING YEARS! I did have a "remission," as I didn't have any for over a year. Last week, however, they came back with a vengeance, which is why I'm here.
What in the hell helps this pain??????????????????
I don't have insurance so can't go to a neuro. . .
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christophercheek
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living with this beast
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Re: WELCOME!
« Reply #260 on: Nov 28th, 2007, 2:10pm » |
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Hello my mother-in-law told me about this site.
My name is Chris I've had CH for over 16 years now been to doctors, used oxygen, lithium and Imitrex among others. No relief, my longest remission has been 5 months. And it has just ended. again I'm afraid to go to sleep, I finally just do it just to get it over with I know i'm just hold off the inevitable.
I like this site and I beleive you'll be hearing more of me.
Christopher
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Guiseppi
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Re: WELCOME!
« Reply #261 on: Nov 28th, 2007, 2:57pm » |
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How did your mother in law hear about it???? It's awesome that the word is getting out to people like yourself. Welcome to the board, here's hoping we can help. Have you read the oxygen link on the left yet? Many find oxygen failed them because of HOW it was used. Might be worth a second shot.
When you get a chance tell us what your current preventative routine is, what, if anything, you take to reduce the frequency and intensity of your attacks, and what you take when a headache starts. Maybe you can teach us something, maybe we can point you in another direction. It's what this board is really all about.
Welcome, so glad someone pointed you to us, like it or not you're family now!!! 
Guiseppi
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christophercheek
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Re: WELCOME!
« Reply #262 on: Dec 1st, 2007, 4:25pm » |
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Well I try to drink alot of water, to prevent. I try not to eat peppers bell peppers those sort of vegitibles they seem to be a trigger for me. I dont have a great preventative stradigy.
When one comes on some times i can stop it with my breathing. I take deep slow breaths in and out. I start pounding coffee if that doesnt work sometimes that well shorten them. IF one wakes me up I'm screwed I'm left pacing crawling on all fours cussing moaning trying not to slam my head into things I've done a lot of that in the early day and it does no good.
i'll talk to my Dr. about trying O2 again, It's worth a shot. i wont let them give me narcotics they dont work anyway.
Christopher 
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Guiseppi
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Re: WELCOME!
« Reply #263 on: Dec 1st, 2007, 11:56pm » |
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You're 100% correct on narcotics, they are useless for the pain and pack waaaayyy too many problems.
For 02 to really be effective, you must breathe 100% oxygen, no otside air, no re brethed air, you must use a NON RE BREATHER MASK or a DEMAND VALVE. You need a regulator that can provide up to 15 LPM or greater air flow. Most can abort in under 10 minutes using oxygen this way. I so hope it works for you.
You also might wanna look into verapamil as a prevent, either alone or in combo with lithium many have found success. If coffee helps definitely try the energy drinks that combine caffene with the taurine, many can abort using only that.
Guiseppi
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christophercheek
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Re: WELCOME!
« Reply #264 on: Dec 2nd, 2007, 12:46am » |
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I've been drinking energy drinks all day in fact I've had the shadow most of the day. And I'm just hoping it dosen't explode I'm going to the Dr. Tuesday or wed. those are my days off. i'll talk to him about the verapamil but the lithium has had adverce affects with me. oh. also I'm gonna take your advice and try the O2 again last time it was more irritating than anything but I was givin the nose tubes to use by the Dr.
Christopher
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| « Last Edit: Dec 2nd, 2007, 12:50am by christophercheek » |
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DennisM1045
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Re: WELCOME!
« Reply #265 on: Dec 2nd, 2007, 12:41pm » |
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Hi Christopher,
You should read through the Oxygen info on the OUCH-US site, print the info out and take it with you to the Dr. If he perscribed nasal canula to you last time he'll probably need to see the research posted there to get the perscription right. Good luck...
http://www.ouch-us.org/medications/oxygen/o2links.htm
-Dennis-
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Guiseppi
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Re: WELCOME!
« Reply #266 on: Dec 2nd, 2007, 10:25pm » |
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No one who has tried the nasal canulas has had any luck with them. They are worthless as you get too much outside air...........Please read the link on oxygen, the right rig might make all of the difference in the world.
Guiseppi
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ChristineUK
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Re: WELCOME!
« Reply #267 on: Jan 22nd, 2008, 7:46pm » |
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Hello my name is Christine, I am 39 years old and I live in the South of England. I was diagnosed with cluster headaches last wednesday.
On christmas day I accidentally sprayed myself in the face with perfume and a few hours later I was just sitting watching TV when I began to experience really severe pain in the roof of my mouth followed by burning in my right nostril then such severe pain behind my right eye it just crippled me.
Although the pain had taken me by surprise it was not unfamiliar to me, just this time I had no explaination for it apart from the perfume.The pain subsided after 20 /30 mins but during this time I thought my face was going to explode or at the very least I had been shot in the temple!
When the pain had gone I began to ask myself all the usual questions was it my teeth? It couldn't be I have no top teeth left! Maybe it was a blockage in my sinuses but my nose was running like a tap.
Over the next few days I experienced this maybe 5/6 times daily and by the time the New Year had arrived I knew that I needed to get to a doctor. I saw a doctor I had not seen before, and once I had explained what had happened to me I had 3 pages of paper put into my hand explaining all about cluster headaches.
Even then I could not see what had been staring me in the face for the last 21 years! An appointment was made for me on 16th January to see a specialist and I sat explaining to this guy what awful pain I have suffered with my sinuses over the years to which he responded he doubted i had ever suffered sinus pain and told me all about cluster headaches. He went on to tell me I was lucky by the time some people are diagnosed they have had all of their top teeth taken out, it was at this point I realized what had been happening to me.
I was 19 when i had my first tooth drilled, incidentally the tooth directly under my right temple and in November last year I had a orthodontic plate fitted to replace the teeth that I have had removed over the years whilst suffering such severe pain.
Once i had run out of teeth to blame the pain on, I went through every decongestant and sinus remedy I could buy although, I could never understand why nobody seemed to suffer sinus pain as badly as I did.
I have been told that I need an oxygen tank and also a nasal spray of which I don't remember the name but I am waiting for the doctor to hear from the specialist before I can have this medication.
As you can imagine I am very scared and just waiting for the pain to start, it seemed to have lessened to one bout of pain per day which has occurred late afternoon for the past 3 days but without any form of pain relief I would be interested in any suggestions.
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| « Last Edit: Jan 22nd, 2008, 7:47pm by ChristineUK » |
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doddy7
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Re: Welcome!
« Reply #268 on: Feb 7th, 2008, 10:03am » |
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on Feb 10th, 2004, 7:08pm, Little Deb wrote:I shall bump this one, cause it is good......
And say hi to everyone while I am at it!!!!
Big Hugs....Little Deb |
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doddy7
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Re: WELCOME!
« Reply #269 on: Feb 7th, 2008, 10:05am » |
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hello
not sure what i am meant to do here but trying to get someone to talk to me?
husband today been diagnosed with ch and want to know if anyone else on oramorph? 
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Guiseppi
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Re: WELCOME!
« Reply #270 on: Feb 7th, 2008, 10:10am » |
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Go to the "getting to know you board." Start a new post and title it, husband has CH, questions?? I have no experience with the med you listed. But many many people will respond to your post, including many who live in England! We don't tolerate anyone suffering this stuff alone. Bless your heart for being a supporter!
Guiseppi
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vietvet2tours
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Re: WELCOME!
« Reply #271 on: Feb 7th, 2008, 10:15am » |
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on Feb 7th, 2008, 10:05am, doddy7 wrote:hello
not sure what i am meant to do here but trying to get someone to talk to me?
husband today been diagnosed with ch and want to know if anyone else on oramorph? |
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It's morphine. Make ya loads of fun at parties but not good for ch.
potter
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Kill em all let God sort em out
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KatzPurr
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WELCOME!
« Reply #272 on: Mar 25th, 2008, 8:08pm » |
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Thanks for the warm welcome to all newbies. I have only been a member of this site about a month and have posted a few times. Interestingly, I stumbled across this page several years ago when I was suffering from my last bout of ch, but I was at the end of my cycle and didn't join. In restrospect I wish I had, as I am a big believer in supporting others.
I suppose I have more to contribute than I realized initially, since I have been a sufferer for 32 years. I have tried most meds out there and have never been successful finding any to stop my cycles. I'm just thankful that my ch are episodic, so knowing they will ultimately end is what mostly gets me through a bout. The thought of becoming a chronic sufferer is terrifying to say the least and for those of you who fit in this category, I can only say that my prayers contintually go out for you.
Final thanks go out to DJ, the creator and webmaster of this website. You have done a wonderful thing by bringing fellow sufferers together to provide both information and support to one another. YOU ROCK! 
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jon019
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Re: WELCOME!
« Reply #273 on: Mar 25th, 2008, 8:33pm » |
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on Mar 25th, 2008, 8:08pm, KatzPurr wrote:
Final thanks go out to DJ, the creator and webmaster of this website. You have done a wonderful thing by bringing fellow sufferers together to provide both information and support to one another. YOU ROCK! |
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Excellent post KatzPurr, and well, welcome. No truer words than above.
Regards
Jon
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"The beginning of wisdom is to call things by their right names." (that's cluster headache doc)
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John588
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Re: WELCOME!
« Reply #274 on: Apr 16th, 2008, 11:37am » |
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Well the devil came back after 10yrs. I decided to quit smoking so i started taking chantix within one week the first one hit about a 6 on the kip scale. Thought maybe it would pass quickly stuck it out for 2 weeks about 3 a night all in the 5 to 6 range. I gave up went to the neurologist he gave me the script for the steroids and said to stop taking the chantix. 24 hours after stopping the chantix and without starting the steroids the beast went away. Thought I had dodged the bullet but at 2:30am and 5:30am got smacked with a 6 and a 7 ten days since the last one. Now the dam shadow is hanging around. I guess its time to start the steroids last time i gained 20 lbs and slept an average of 4 hrs a night. Sorry this is a bit of a rant but just had to tell someone who understands.
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