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ellenjoanne2003
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Hi, I'm new
« on: Jul 17th, 2005, 12:42am » |
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Hi, my name is Ellen. I'm a 41 year old single woman from Wisconsin. Believe it or not I suffer from clusters. I've suspected it for years. I had my first episode at age 36 (for 3 weeks in Nov. 1999).
I had my second episode in the summer of 2000 (for about 5 weeks, this was was rather brutal). I had heard about clusters as being bunches of headaches at this time, but I wasn't 100% sure. Since I had family members who suffered from summer allergies, my doctor at the time, prescribed Claritin (it was a prescription drug at the time). I didn't get any more cluster attackes until Nov. 2002. Then, like clock work, in Nov. 2002, 2003, and 2004 . In Nov. 2004, I had the misfortune of having an attack while visiting my parents. Since I sounded so nasal (as in plugged up [isn't great how cluster attacks cause one sinus to run like Niagra Falls?]), my mom ( retired medical clinic lab tech.), told me I should talk to my asthma doctor (I was diagnosed with asthma in 2003), who is also an allergist to find out if my headaches were allergy related.
Since my headaches always occur at specific times of the year, my asthma doctor doubted that they were allergy related, so she gave me a referral to a board certified headache specialist. My cluster episode was done by this time, and I filed away the headache specialist's name for future reference, figuring I wouldn't need to see him until Nov.2005.
Well guess what, for the first time in 5 years, I had a cluster episode in the summer! I had the first attack at 2:30 on a Sunday afternoon, about 4 weeks ago,after leaving a movie theater. It took me by surprise. When I felt the first symptoms coming on, all I could say to myself was "nah, it can't be one of those, I haven't had one at this time of the year in 5 years." So I started driving to a local shopping mall, instead of straight home. By the time I reached the mall, the pain was so crushing, I turned around, and went home. I had used over the counter migraine pain relievers with a modest amount of success during my episode in Nov. 2004 (they only worked if I took them at the very onset of an attack, and even then, sometimes they still didn't work), so even though I knew my headache was pretty far along, out of desparation, I took some Tylenol migraine. It did me absoloutly no good. I suffered the attack for the next 2 hours or so. The pain level was about 9, and for the first time in my 5 plus years of suffering from the headaches, I wound up crying like a baby for about 10 or 15 minutes. I finally reached a point where I could take no more about 3 weeks ago, when for the 3rd day in a row, I suffered an attack at work. I called my best friend on the phone, and started to cry, she told me I'd better seek help once and for all, to deal with these attacks.
I saw the headache specialist about 1 1/2 weeks ago, and told him that I suspected I that I suffer from cluster headaches, but was hesitant to be certain since self diagnosis is a dangerous thing to do. I was given a battery of tests, and was told that I most definitely do suffer from cluster headaches. So it's official now. I have to carry an Imitrex injector for attacks, and take melatonin and Verapamil to help prevent attacks.
So what are the attacks like? For me, it's as though somebody drove a spike into my right temple, and behind my right eye. My right eye and right nostril both run like crazy. Sometimes I get 2 attacks a day (but, usually it's only one a day). I typically get the attacks in 2 time windows: 11am to 2pm; and 10:30pm to 1am. The occurances seem to be evenly divided between both day and night (I just love the night ones, especially since they wake you up out of a sound sleep, and you can't get back to sleep until they are done). Oftentimes after an attack, I'm all wrung out, and have ended up actually sleeping for a few hours after a couple of weekend afternoon attacks.
I haven't had any major attacks since the night of the 4th of July, when I had one at about 11pm. I think it was the worst attack I've ever had (Pain level 10). It lasted about 2 1/2 to 3 hours. Pain relievers were useless, and I cried like a baby, and squirmed in agony in my bed. Since July 7 (when I was diagnosed), I have been taking Melatonin, Verapamil daily. I have had a couple of lesser attacks in the last few days (about 1/2 hour duration, pain level 6 or 7), but I've been able to deal with them by using over the counter pain releivers, and some basic biofeedback pain coping techniques. I've also had a couple of very low grade attacks (just generalized low level ache on the right side of my head, [where I have had all of my attacks]). So, while the meds haven't completely gotten rid of the attacks, they certainly have blunted those I've had.
Well, I'd better get some sleep (my cat was pestering me earlier to go to bed). While things have eased up a bit with regards to attacks, I'm still a little nervous. I don't necessarily have attacks every single day of an episode, but I do get them several times a week. I've had times where they've gone away for a week, and then started up again. I don't really start to relax, until I've been attack free for about 2 weeks. G'night.
Ellen
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burnt-toast
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Re: Hi, I'm new
« Reply #1 on: Jul 17th, 2005, 1:33am » |
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Welcome Ellen
Sorry to hear of another joining the site. You've arrived at the right place for information and support. Folks here understand this nightmare and what it can do to you.
The shift that you mention in your CH cycle is not uncommon, the pain driving one to tears is common and meds. that blunt the attacks but fail to stop them is common.
Spend some time researching med./treatment options on the site and work with your doc. to find the mix that provides you with the best results. Most everyone's response to treatments seems to differ.
Good luck on your journey.
Tom
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
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RichardN
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Re: Hi, I'm new
« Reply #2 on: Jul 17th, 2005, 1:39am » |
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Hi again Ellen
First, I assume you're taking the Melatonin before bed? . . . half hour or so is what's generally reccomended. How much? 3-9mg is common here.
What dosage of Verapamil are you on. It was my preventative after I came here (2/02) and subsequently requested it and 02. My first PF day came at 240mg . . . .increased to 360mg for sustained relief. Many take considerably more and in combinations with other meds.
You ABSOLUTELY OWE IT TO YOURSELF to try 02 as an abortive. Works for about 70% of us to kill the beast in minutes (if used early in the attack) and you can save the Imitrex for the attacks the 02 won't reach. You will need a prescription for 02 . . . .copy info from this site. You need a 15 lpm regulator and a non-rebreather mask (the one with the bag). See "oxygen info" link to the left (just above the yellow "OUCH website".
You have hit the motherlode of CH information. Read, read, read and ask any questions you may have. We are not doctors, nor do we presume to be . . . . but here there are people who truly share your pain and whose goal is to beat the beast for all of us..
Welcome to Clusterville
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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ellenjoanne2003
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Re: Hi, I'm new
« Reply #3 on: Jul 17th, 2005, 9:50am » |
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Hi Richard,
I take 6mg of Melatonin (I had to get the over the counter Walgreens dietary supplement stuff since my insurance presciption plan wouldn't cover the prescription form of it). My doctor prescribed 240 mg of Verapamil as a starting point for me. With regards to O2 - yeah I've heard of that treatment. I'm loathe to use the Imitrex, just because I'm not wild about gving myself a shot (even if it is with an autoinjector). Also, I'd prefer to husband my Imitrex for the worst of my attacks, because I only have 2 doses at this time (my insurance will only pay for 2 at a time [to get the recommended 22 additional doses my doctor wanted would have cost me another $160, ouch!]).
I have a pretty high pain tolerance. I will admit that for a few minutes, I did consider using the Imitrex for the 2 meduim sized attacks I mentioned in my original posting. But like I said, they weren't as painful as the major attacks. So, breathed very deeply (sort of a crude O2 therapy), and told myself to calm down, and push the pain away. It took about 15-20 minutes, but it did work, and the pain did go away (almost as suddenly as it came to me [most of my clusters take 10-20 minutes to really go full blown on me]). I'm just glad to be free of pain that's so intense, the it stops me dead in my tracks, and in some cases makes me stagger around like I'm drunk.
Clusters are no fun, they hurt more than migraines (from what I've read, and been told by my doctor [although people I know who have migraines, beg to differ]), but at least I don't wind up having lay in a dark room for 2 days like my brother in-lae does, when he has migraines.
Hugs,
Ellen
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pattik
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Re: Hi, I'm new
« Reply #4 on: Jul 17th, 2005, 12:28pm » |
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Hi Ellen,
Welcome to the board, but so sorry you had to find us. This place is a wealth of information, so read as much as you can, and you might want to look into the use of oxygen as an abortive. There is plenty of info here on the proper use for this, but also feel free to ask a lot of questions. There are many folks here who will be glad to help answer your questions and who can steer you to many good resources.
Here are a couple of good links to help you get more info. Best of luck and pain-free wishes for you.
Patti
http://www.brightok.net/~mnjday/chtherapy.pdf
http://www.aafp.org/afp/20050215/717.html
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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alchemy
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Re: Hi, I'm new
« Reply #5 on: Jul 17th, 2005, 12:41pm » |
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Hi Ellen welcome to our special site, sorry you had to find us but glad you did. There is a wealth of informatin here so read read read, and there is a wealth of support so breath your not alone jim
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Kris_in_SJ
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Re: Hi, I'm new
« Reply #6 on: Jul 17th, 2005, 9:04pm » |
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Ellen - Follow Pattik's links and check my message on women in their 40's on your other thread. You've found a sister in symptoms, my dear. And ... you'll find many friends here.
Hugs,
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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Barry_T_Coles
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Re: Hi, I'm new
« Reply #7 on: Jul 17th, 2005, 10:40pm » |
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Hi Ellen
Welcome to the site, I only found the site around Christmas just gone and thank God I did .
What I have learn't from these people you just could not buy.
After six months of readind everything here I could my mental state is back where it should be now that I am more informed.
These people are just so willing to pass on any info even if you think your question is dumb just ask, we can only find out by asking and this lot know more than anyone.
And yes the beast visits Australia when not antagonising elsewhere.
Kind Regards
Barry
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Worry is like a rocking chair it gives you something to do but gets you nowhere.
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AussieBrian
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Re: Hi, I'm new
« Reply #8 on: Jul 18th, 2005, 1:14am » |
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on Jul 17th, 2005, 9:50am, ellenjoanne2003 wrote:| So, breathed very deeply (sort of a crude O2 therapy), and told myself to calm down, and push the pain away. |
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That's some of the best advice you're ever gunna get, and you've worked it out for yourself.
Stay strong and we're always on your side,
Brian.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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Sandy_C
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Re: Hi, I'm new
« Reply #9 on: Jul 18th, 2005, 8:30pm » |
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Welcome Ellen, sorry you are here.
Read everything you can on this board, and on OUCH. The information you can get here is priceless
I have found that the veterans of this Godawful "affliction" really know what they are talking about and can be of tremendous help to you. They are abolutely great! 
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Topical
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Re: Hi, I'm new
« Reply #10 on: Jul 19th, 2005, 6:49am » |
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Hello Ellen.
I am glad you have found this site. We all understand exactly what you are saying. Having free time and no pain then that pain hits again. Having the pain gone for a time and then it comes again. It's so cruel and debilitating when it comes.
Please do get some O2. I use a form of feedback trying to calm myself during attacks. Without the O2, I would lose control when hit by a Kip 8 or higher. With the O2, I seldom get past a Kip 5. So I remain in some control waiting for it to pass.
Once I found Oxygen worked, it made it so much easier dealing with the pain. I have been lucky lately. I am able to get rid of the HA at night in around 5 minutes. It's become more of a nuisance than anything else. The sooner I get to the O2 the faster it works.
I take verap as a preventative. It takes about 2 weeks to ramp up and then I get hit maybe once or twice a week until the cluster episode passes. I hope it works as well, if not better for you.
Stay strong and be PF!
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ellenjoanne2003
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Re: Hi, I'm new
« Reply #11 on: Jul 28th, 2005, 9:48pm » |
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Thanks for all of the kind words and advice people! I seem to basically be over with this batch of clusters. Once I went on the meds my doctor prescribed, the headaches became tolerable (about kip 5 or so), and much less frequent. I haven't had a HA in about 1 1/2 weeks. I'm sorry it took so long for me to reply, I've been kund of busy. Now I get to look forward to my usual November episode. Not!
Ellen
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RichardN
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Re: Hi, I'm new
« Reply #12 on: Jul 28th, 2005, 11:13pm » |
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Hi Ellen
Terrific news on the PF days . . . . and hope he stays away for a long time, but . . . .
Make sure and make the arrangements for the 02 so it will be there the next time he shows up.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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