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   Author  Topic: WELCOME!  (Read 49029 times)
tanyae
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Re: WELCOME!
« Reply #175 on: Nov 26th, 2005, 9:38am »
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Hello. I am new here. Just found the site yesterday. I am in the middle or hopefully the end of my first CH.  
I am a 45 yo female, and totally confused. I had never even heard of CH, and now I don't know how to handle everything that has come my way and will be coming in the future. This is scary stuff.
I am relieved to know that the excrutiating pain is as bad as I thought. My husband and daughter both have migraines, but they are generally able to function while having one. I was beginning to feel like a weenie with these headaches of mine because they would totally take over.  
My Dr. has put me on Maxalt and Tylox. Any input on those two drugs?
Will the CH bouts continue to worsen each time I have one? What does everyone mean by shadows?
What advise do you have for someone recently diagnosed?
I am afraid to go anywhere in the evening because I don't kow when they will hit. Sometimes they hit me before even going to bed, while watching TV...  
Looking forward to hearing from you all.
Thanks for the great info that everyone puts out.
TanyaE Huh
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BobG
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Re: WELCOME!
« Reply #176 on: Nov 26th, 2005, 11:57am »
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on Nov 26th, 2005, 9:38am, tanyae wrote:
Hello. Hello yourself. How you doin’? I don't know how to handle everything that has come my way and will be coming in the future. One way is to read all you can at this site. There is more info on CH here than anywhere in the world. I am relieved to know that the excrutiating pain is as bad as I thought. Huh? LOL!
 I was beginning to feel like a weenie with these headaches of mine because they would totally take over. You are not a weenie. You are experiencing the most painful condition known to man (and women).My Dr. has put me on Maxalt and Tylox. Any input on those two drugs? Tylox: This medication is a combination of a narcotic (oxycodone) and a non-narcotic (acetaminophen) used to relieve moderate to severe pain. Oxycodone works by binding to opioid receptors in the brain and spinal cord, and acetaminophen decreases the formation of prostaglandins, therefore relieving pain. Warning, Use this medication exactly as prescribed. Do not increase your dose, take it more frequently or use it for a longer period of time than prescribed because this drug can be habit-forming. Also, if used for an extended period of time, do not suddenly stop using this drug without your doctor's approval. For most CH sufferers pain killers do not help and may make things worse.
Maxalt: aka Rizatriptan is used to treat migraines. It helps to relieve headaches, pain and other symptoms of migraines, including sensitivity to light/sound, nausea, and vomiting. Prompt treatment allows you to get back to your normal routine and may decrease your need for other pain medications. Rizatriptan does not prevent future migraines or reduce how often you may get a headache. Rizatriptan belongs to a group of drugs called triptans. It affects a certain natural chemical (serotonin) that constricts blood vessels in the brain. It may also block other pain pathways in the brain. Warning: DO NOT take Maxalt if you are taking Imitrex or any other triptan.
Will the CH bouts continue to worsen each time I have one? Not necessarily but maybe yes. What does everyone mean by shadows? That is a feeling you get behind your eye or maybe a tender spot in the temple. It’s a very minor CH attack. Irritating as heck but not real pain, yet. It’s just the devil letting you know that she is not through with you.What advise do you have for someone recently diagnosed? Read this site. Learn all you can.I am afraid to go anywhere in the evening because I don't kow when they will hit. Take your Maxalt with you. And try to get a small tank of oxygen you can carry in your car. Or, try to get Imitrex injectors (if you can tolorate it). It can stop an attack in just a few minutes, quicker than the Maxalt pills. Sometimes they hit me before even going to bed, while watching TV... That’s something many of us try to avoid by staying active and/or stressed. “Stay stressed. Never relax. Never sleep. Ever.”

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Stay stressed. Never relax. Never sleep. Ever.
tanyae
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Re: WELCOME!
« Reply #177 on: Nov 26th, 2005, 10:07pm »
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Thanks Bob for the write back. Scar stuff we're dealing with here.
I will keep reading, and reading like you suggest.
Looking forward to getting to know more of you.
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Jasmyn
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Re: WELCOME!
« Reply #178 on: Dec 21st, 2005, 1:37pm »
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HI Tanyae and welcome.
 
I am sorry that you have CH but the best way to deal with it is to know it.  Like Bob said read and read more.
 
Nobody can promise that it will become less severe but know this...
 
You will never be alone with this, we are here.
You are not a weenie, you must be strong to handle this and you will get stronger every time and when you wanna give up, we are here, we understand and we fight this battle with you.
It will be tough on your family and your normal life but you will find ways to work around it and cope and always remember we are here.
You are now part of our family and we are here for each other.
We, including you, are survivors, never forget.
Try to get your hubby to join the supporter group, he and you will benefit from knowing how to deal with CH and both get the support you'll need.
 
And like Bob said stay stressed, it is the best, relaxation is not for us CHers.
 
Jas
 
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Re: WELCOME!
« Reply #179 on: Jan 22nd, 2006, 12:35pm »
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Hi,
 
I am new the site!  I am 32 and have had attacks since college.  I have been lucky and NOT had an attack in 3 years.  That all ended about a week ago.  I thought I was feeling better.  I was wrong.  I am having a bad morning.  An attack at 1:15 am and an other at 7:30 am.  2 Imitrex injections later and my head is dancing around another one.  
 
My doc has me on the Imitrex (Thank God) and Midrin.  All while waiting for the Verapamil to build up.  
 
Any tips to help with the anxiety?  I am also afraid I could become chronic.
 
I am sooo glad you are here!
 
Thank you
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Re: WELCOME!
« Reply #180 on: Jan 22nd, 2006, 1:05pm »
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PF for 3 years.
 
In cycle for 1 week.
 
In my years here on Ch.com you are the winner of the "Farthest Thing From Chronic" award.
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Re: WELCOME!
« Reply #181 on: Jan 22nd, 2006, 3:43pm »
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I am feeling much better than earlier today.  I have been doing a lot of reading on this site today.  Thanks again, to all the postings and information.
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Re: Welcome!
« Reply #182 on: Feb 19th, 2006, 1:18am »
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on Feb 11th, 2004, 12:35am, ClusterChuck wrote:
To all newcomers, WELCOME ABOARD!
 
A few thing I would like to tell all of you.  First and foremost, you need to read this link: http://www.clusterheadaches.com/history.html
That link tells the history of this site, and about our illustrious DJ.  There is not a finer person on this earth!
 
Second, get to know the people here.  There are some wonderful people here.  One of the ways to get to know us better, is to go to the chat room that a sister site runs.  To get there, go here: http://headachesupportgroups.com/echat45/public/index.html  There is normally someone there after 10 pm east coast time.  If no one is there, log on, and wait.  Many of us will check there and, if no one is there we just go away, but if someone is there, we jump on in.
 
Get to know people, as you will form close ties with people that should last to the rest of your life.  Exchange phone numbers.  Talk on line, and talk on the phone to them.  These people can be an unbreakable life line for you, and you can be for them.
 
Use this site to air your problems, questions, complaints, cry, whine, scream, shout, or whatever.  We are here to help you in any way that we can.  The one thing that we ask of you, is to give your support to others, also.  We are sufferers, and we are supporters.  As DJ said, this site is a help to us, in that we can get information and support, but we also get tremendous satisfaction from helping our brothers and sisters.  
 
If you ever get a chance to meet another clusterhead or supporter, do so!  There is no better time than meeting them in person!  The bond is instantaneous!  And do not let the fact that you are in cycle stop you.  I have been to two of them, so far, and at both of them, I was getting hit.  All I did, was go to another room (I am the type that wants to be alone), suck on my oxygen, and when done, go back to the group.  Everyone knew what was happening, yet no one freeked out over it.  They were there if I needed them, but knew enough not to force themselves on me.  You could see the love and vibes in the eyes of each and everyone of them.  This is the only place where you can get hit, and everyone will know what you are going thru, and no one will tell you "Oh, it's just a head ache!  Deal with it!  Take a couple aspirins, and you will be fine."
 
Sorry for being so long winded, but the above are things that have been such a life line for me, and almost every other clusterhead here.  Many of us say, that if it was not for this site, I would be pushing up daiseys.  That is not just a phrase, it is the God's honest truth.  When you are praying for your fellow clusterheads, and their families, give a special thanks to God, or who ever you pray to, for DJ and his amazing creation!  Also, thank DJ directly.  He doesn't post much anymore, but he DOES read all posts.
 
Thank you DJ!
 
We are a family.  Welcome to the family, and welcome to my heart.
 
Chuck

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Jasmyn
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Re: WELCOME!
« Reply #183 on: Feb 19th, 2006, 4:11pm »
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Getty, thanks for posting this one from Chuck, it stays a GREAT Welcome and still is true!
 
Welcome to you!
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Re: WELCOME! new and poor
« Reply #184 on: Mar 8th, 2006, 5:50pm »
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I'm new to the site. My name is Thomas. My brother turned me on to this site, because he was just diagnosed with ch.   I've had ch for only a year.  diagnosed first with migraines then ch, then the mri showed a cyst in the maxillary sinus cavity. However after reading symptoms of ch I'm convinced that I have ch. One of my clints insisted that she drive me to the hospital when she saw the tears running down my face.   She kept telling me to lie down, and I kept stadding up. Kind of hummorous; if I wasn't on a deadline. I can not afford a  neurologist that  I can rely on. IC in colorado will help with a general practicioner, but not specialists, and I'm still paying off the $900.00 for the guy to read the #@%@ MRI.  I've gone back to school too get a better job with benifits, but with this episode hitting the first 4 weeks of the class. She (the teacher) just posted extra credit, bt it is not avialable to anyone who has missed more then 2 class periods. I'm still getting a high C, but figure to get into the school that I want to I need a B or higher. Any way back to the DR. he has prescribed verapamil 180mg once/day, and for that "instant" relief he told me top take over the counter Migraine meds. (we will be having a talk)  
WOW I was just going to write a short note about myself, I guess I needed to vent alittle.  Thanks for listening. confused2
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Jonny
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Re: WELCOME! new and poor
« Reply #185 on: Mar 8th, 2006, 7:21pm »
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on Mar 8th, 2006, 5:50pm, Colorado_Loki wrote:
Any way back to the DR. he has prescribed verapamil 180mg once/day, and for that "instant" relief he told me top take over the counter Migraine meds. (we will be having a talk)

 
How can I say this in a nice way?
 
Your Doctor is a fucking idiot and knows nothing about CH pain if thats what he told you!!
 
Plus, your Verapamil dose is way to fucking low, talk to his ass about that!
 
Keep reading, you have alot of that to do if you have only been in this game for a year!
 
Arm yourself with Knowledge!
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Re: WELCOME!
« Reply #186 on: Mar 8th, 2006, 8:15pm »
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I agree- Jonny, and nobody could have said it better!!!
 
This is the only place where you can get good info.
 
PF now for almost 1 &1/2 weeks...yea finally after 35 + days. Now, I sound like a weenie.
 
Thanks to everyone here!!
 
Sheila
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Jonny
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Re: WELCOME!
« Reply #187 on: Mar 8th, 2006, 9:12pm »
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on Mar 8th, 2006, 8:15pm, shenke wrote:
PF now for almost 1 &1/2 weeks...yea finally after 35 + days.

 
Congrats Kid, PF talk is always welcome here....it gives folks hope.
 
Weenie?.........I dont think so!...Nuff said!
 
I hope you sleep well, its one thing we all 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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Re: WELCOME!
« Reply #188 on: Mar 19th, 2006, 7:41pm »
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Thanks Jonny- sure wish I could meet everyone someday.  This place has been the greatest gift.  Told my husband about the gathering - he thought I was crazy.  But everyone here at this site feels like family.
 
Guess I was crazy for a while, just glad to be PF now.  Need a break!!!  
 
Ready for a drink too, just scared.  Think I might give it a try in a few weeks...time to celebrate!!!
 
Sheila
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Re: WELCOME!
« Reply #189 on: Mar 20th, 2006, 12:37am »
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Hello all,
 
I am so glad that I found this board.  I haven't had a CH since 1999 until last week.  I woke up with the worst feeling, not only in my head but just thinking that this was beginning again.  Last time it took me 6 months to get over the cycle.  It was pure hell.  Now 7 years later I have three children all under the age of 4 so I am really scared.  The last time I had them blood pressure meds and beta blockers did not work.  The only thing that did was periactin (antihistamine).  I loved it because I felt better but I hated it because it made me sleep about 13 hours a day.  With three kids I am really between a rock and a hard place on that one.  I am so happy there is a med that helped me but I don't know if I can function taking it now.  
 
My doctors had a hard time even figuring out what was wrong with me years ago because I am a woman and women apparently don't get them as much as men.  I told them that I had done the research and I knew they were not migraines but clusters.  I feel the burning starting in my head now and I am so scared to go to sleep because I know I will wake up again with one.  Last night I had one at 2 a.m. that was the worst I have ever had.  Childbirth for me was no where near to that in comparison.  I thought I was going to die.  I was screaming, rocking, banging my head.  This one took 60 minutes to go away which never happened before.
 
So I am going to try Allegra (non-drowsy antihistamine) that I am sure won't work as good (or if at all) as the Periactin did.  My doctor thought it would be more safe than falling asleep on my three kids apparently.  
 
Anyone else had luck with Periactin or any other antihistamine (sp?).  I am so glad I found you all.  I am sure it will make this cycle more bearable to have people to talk to!
 
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Re: WELCOME!
« Reply #190 on: Mar 20th, 2006, 12:55am »
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Hello Ai, sorry that you had to have a reason to find us but glad you did. Read all you can, there is a wealth of information here if you take the time to look it up. Start a new thread here and introduce yourself, more people will respond. They kinda get lost in these longer threads. Reading your post it looks like your Dr isn't that informed on CH. Post what you have taken before and what your takeing now so that the more experianced people here can have a look. Anti histamines have never done much for me, nothing over the counter has. Anyhow hate that you had to find us but glad you did.
Matt
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Re: WELCOME!
« Reply #191 on: Mar 20th, 2006, 12:56am »
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Welcome, ai. Sorry you have to be here, but I'm glad you are. There is lots of info and support here.  
I've never had luck with antihistimines, and they are not a standard CH treatment. Look over on the left at the oxygen info link. It's very effective when used properly. Here is a link for standard CH treatments. Most people use a preventative and an abortive. Print these and take them to your dr. You should be able to get a prescription for oxygen and some meds as well.
http://www.ouch-us.org/medications/medications.htm
Read, read and then read some more...information is your best weapon.
pain free wishes, nani
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Re: WELCOME!
« Reply #192 on: Mar 20th, 2006, 1:17am »
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Thank you both so much!  I want to post a new thread but I haven't figured out how to do it.  I'm not used to this type of board yet I guess  Smiley  I really appreciate all the advice!  I will check it all out.  This site is great.  I will try and post a new thread tomorrow to introduce myself.  I'm about to try and get some sleep (until the monster wakes me up).  Unfortunately, I feel so much pressure building in the right side of my head that I know I'll be back up again soon!  Thanks again!
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Re: WELCOME!
« Reply #193 on: Mar 24th, 2006, 12:48pm »
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After a 3 year absense, I am back.   Remission is bliss, but the support here is incredible.  
 
I am more frustrated than anything.  Feeling like a walking science experiment of Imitrex, Topomax and Stadol.  
 
Challenging this prick of a beast each time I feel a tingle in my nostril or a twitch of my eyelid.     I'd rather fight than be drugged.   Has anyone had success with O2 or water treatment ?   thanks,
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Re: WELCOME!
« Reply #194 on: Mar 24th, 2006, 8:04pm »
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I'm not quite sure how these message board things work but its worth a try.  I have been suffering from clusters for 7 years now and I'm about three months in this time around. and hoping for some relief soon!!!
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Re: WELCOME!
« Reply #195 on: May 7th, 2006, 1:10pm »
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Welcome everybody but sorry you are here because of having to deal with this horror. We all do or have done so. I've been free of it for about 15 years but I feel at home here. I don't know why the beast is afraid of me. There are some stories about an age factor. I'm 59 but for some, CH started in middle age. It drives me batty.  
 
Anyway, these goons know of what they speak. Lots of good stuff here.  
 
Here is something that worked for me most of the time. It ain't easy but it's worth the effort:
 
     Dr. Wright’s Circulatory Technique:
 
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
 
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
 
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
 
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.  
 
Charlie  
 
 
 
 
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Greetings from Spain
« Reply #196 on: May 31st, 2006, 3:50pm »
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Hi people
 
First of all, excuse me for my awful English.
 
My name is Daniel and I'm suffering CH since 2001. I'm male, 38 years old and got what I call myself the "standard" CH (mean, 20-30 days cicles once a year -usualy December, but this year... MAY!!!, grrrr-, waking up 2 hours after going to bed with the headeache, oneside insane pain, left eye burning, etc.). I must confess I smoke (and too much) and the only known trigger is alcohol when the beast is working. I'm also diabetic. Well. That's just the start. I wanted to introduce myself. Hope to keep on touch.
 
Thanks
 
Daniel
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Re: WELCOME!
« Reply #197 on: Aug 1st, 2006, 10:48am »
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Daniel,
 
Welcome! Smiley
You'll find lots of information about ch right here at this site. And lots of people who know what you're going through. We come from around the world and we're here to help when you need advices/vent.
 
Best wishes & PF time,
Sanna
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Re: WELCOME!
« Reply #198 on: Aug 1st, 2006, 6:00pm »
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My name is Larry and I've been a CH since 2004. I'm a 57 year old male in Illinois.  I have epilepsy and sleep apnea...not that those are related.  I've only had one seizure in 1981 and been on dilantin ever since.  I use a CPAP for apnea.  The neurologist diagnosed me as CH almost immediately and put me on 10 lpm 100% Oxygen(thank goodness)  and found almost immediate relief.  In my first episodes I had tanks of O2 (2004).  Then I got an oxygen concentrator which filters out the gases out of the air except oxygen.  This way I can use it anytime I need it when I'm home...although I cant take it with me.  I'm going to the neurologist on Friday to see if there are any meds I can take with me to work and out away from the house.  I searched the site and found some I might ask the MD. about.  The episodes have been getting worse each year...that is more intensity and more headaches per day.  
 
 
 
Today is the worst day ever...I had 8 episodes.  With the O2 it doesn't get past 10-15 minutes.  How will I go to work???
 
Then I had 24 hours free...but...the demon is baaaack!!!
 
Larry
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Re: WELCOME!
« Reply #199 on: Aug 19th, 2006, 2:55am »
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hi...my name is kaz and last friday i had my first headache...Ive never been one to get a headache but have had INCREDIBLY painful headaches above my right eye at 9.00am every day since. It goes from 0-painful in about 30 seconds! my eyelid goes droopy too. I sometimes feel like I'm going to pass out. About 12ish I'm feeling better. No painkiller as yet has touched it. The doctor says I have cluster headaches. I'd never heard of them so feel a little bit afraid. I'm a teacher and am worried because I dont know how long this will last, how long a break I'll get before the next 'lot'... It was great to find this site! I don't think I'm suffering anywhere near as much as many of you, but it's reassuring to know there are other's I can 'talk' to. I have 2 little ones to look after so this all seems a bit daunting at the moment. I'm looking forward to 'meeting' you all.  Smiley
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