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athimmel
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New user, new sufferer
« on: Nov 7th, 2002, 3:12pm » |
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Hello all.
I am a new visitor to this site, and I have a question that I would like to ask to other members..
For the last 4 months, I have been having headaches several times a day, every day. The onset was pretty rapid. The symptoms seem to fit the definition of cluster headaches for the most part (1 side of the head, feels like a knife in the eye), but I don't have the drooping eye lid (ever) or congestion (at least not every time). The biggest question that I have is about severity. The pain is bad, but when I compare it to some of the other stories on this site, mine seems mild in comparison. I haven't taken any trips to the emergency room.
I have had some pretty serious episodes. I registered a 9 the other night. However, I have only been awakened from sleep twice and there doesn't seem to be a set pattern. Maxalt works, but I'm not supposed to take more than 3 per month. (I took 9 last month.) Does this still seem to be cluster headaches to you all?
I am looking for answers. I have changed doctors, because my previous one was a jerk. My new doctor has scheduled me for an MRI this weekend. I could use some help here. My life has been put on hold by these headaches, and I hope that by communicating with others, I might do better at coping with this situation.
Thanks for your input.
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Margi
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Re: New user, new sufferer
« Reply #1 on: Nov 7th, 2002, 3:17pm » |
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Hi Athimmel,
To me, the easiest way to identify clusters is length of attacks and location of pain. Whether or not you go to emergency isn't necessarily a tell-tale sign. My husband has never gone either and he's had clusters for 20mumblemumble years.
So, how long do your attacks last, and where is the pain? Is this your first time having headaches like this?
We need a little more info from you so we can help, ok? Also, it's always a good plan to get in to see a cluster-knowledgeable neurologist for an accurate diagnosis. There is a list of them over at the OUCH website, listed by area, and they are doctors that our members here recommend. Quite often, your family physician isn't trained in diagnosing clusters.
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echo
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Re: New user, new sufferer
« Reply #2 on: Nov 7th, 2002, 3:20pm » |
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As far as being a expert, I am a drip under pressure, but all ends there.
Reads like it could be CH. Frequency, location, etc. I rarely get a droopy eye and absolutely belong to the CH family. Good idea to get the MRI to eliminate other possibilities.
I'm sure that the evening MB shift will have much better answers for you than I.
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Jabeen
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Re: New user, new sufferer
« Reply #3 on: Nov 7th, 2002, 3:21pm » |
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Hello and welcome. I am not sure I am the best source of information because I didn't start until I was 45 and then they were gone for 5 years and now they are back. Anyway-5 years ago they got very bad-but never hospital bad-probably an 8-9 max. If the HA hits a certain intensity, I get the congestion, eye tearing, etc. Some of the others that are only about 4's, I don't get that. What I do get regardless of the intensity is residual pain in the effected eye. Only Fiorcet gets rid of that. Some of these people have suffered for years with no breaks-I didn't consider myself "lucky" until I read their stories. 
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athimmel
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Re: New user, new sufferer
« Reply #4 on: Nov 7th, 2002, 3:22pm » |
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Hi Margi!
Thanks for the response. Let's see if I can answer the questions for you.
My attacks last anywhere between 45 minutes and a couple of hours. Although I had one that never seemed to stop, but just ebbed and waned throughout a couple of days. The pain tends to be in my left eye and the base of the skul at the back. However, it does hit on the right from time to time.
The headaches started about 4 months ago. Prior to that I had headaches, but nothing like this. I had maybe 2 or 3 headaches that could be classified "migraine strength" over the 15 years before this, but nothing frequent. Tension headaches as well. These feel very different.
I am scheduled to go to a class for headache sufferers led by a neurologist. The problem is, I'm a Kaiser Permanente member, so the care doesn't tend to be very personalized at time.
I would appreciate any advise that you can give.
Thanks.
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Bob P
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Re: New user, new sufferer
« Reply #5 on: Nov 7th, 2002, 3:30pm » |
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Why are you not supposed to take more than 3 Maxalt per month?
Clusterheads take 2 a day. Some a lot more than that.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
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Bill_C
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Re: New user, new sufferer
« Reply #6 on: Nov 7th, 2002, 3:31pm » |
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Sounds like the real thing to me. I've head these things since 1968 (my wife says earlier) and I've yet to go to an emergency room. My eyelids don't droop, my nose usually doesn't run. And I can't imagine how anybody can compare pain intensities. It's like saying that the blue I see is brighter than the blue you see. If it's interfering with you life, as you say, that about does it for me. You hurt.
Get a neuro and good luck.
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athimmel
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Re: New user, new sufferer
« Reply #7 on: Nov 7th, 2002, 3:40pm » |
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Wow! This is quite a board! I can't believe how fast everyone responds.
OK...here goes...
Bob P - I'm just going by what the doctor and pharmacist say. They say that I should only take 3 per month. My wife suffers from migraines, and she takes about 10 Imitrex per month, so it may be that my HMO is just trying to save money, I don't know. Do you think it's safe to take more? ???
Bill_C - I like the comparison of pain. You're right, of course. Everyone has different levels of how much pain they can tolerate. I guess the descriptions on the new users page of this website just freaked me out a bit. I guess I'll ask my doctor to refer me to a neurologist, but at Kaiser that's like trying to get them to pull their own teeth. ;D
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Bob P
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Re: New user, new sufferer
« Reply #8 on: Nov 7th, 2002, 4:08pm » |
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Maxalt:
In controlled clinical trials, single doses of 5 and 10 mg of MAXALT Tablets or MAXALT-MLT were effective for the acute treatment of migraines in adults. There is evidence that the 10-mg dose may provide a greater effect than the 5-mg dose (see CLINICAL PHARMACOLOGY, Clinical Studies). Individuals may vary in response to doses of MAXALT Tablets. The choice of dose should therefore be made on an individual basis, weighing the possible benefit of the 10-mg dose with the potential risk for increased adverse events.
Redosing: Doses should be separated by at least 2 hours; no more than 30 mg should be taken in any 24-hour period. The safety of treating, on average, more than four headaches in a 30-day period has not been established.
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Looks to me like you can take 3 ea. 10mg tabs or 6 ea. 5 mg tabs per day. I'm betting that they are the same as the other triptan drugs and you can do that every day with no ill effects. I do believe your HMO is being cheap and we all know what that expert, Dr. Goadsby, says about that:
"We feel that, given the devastating morbidity associated with this excruciating pain syndrome, it is unethical to withhold treatment for cost reasons."
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| « Last Edit: Nov 7th, 2002, 4:10pm by Bob P » |
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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athimmel
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Re: New user, new sufferer
« Reply #9 on: Nov 7th, 2002, 4:14pm » |
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Bob P -
They gave me Maxalt MLT 10mg. I can get them refilled, but when the refills get to zero, the doctor has to approve it again. I think I'll ask for more tablets per prescription. 9 at a time is a bit ridiculous for a 3 month supply.
I also tried Amerge (2.5 mg) but it didn't help.
He's also going to prescribe a calcium channel blocker. (Verapamil or something like that...) Does anyone have positive results from that?
Also, does taking medicine make things worse in the long run? I mean, does it make you more likely to get the headaches year after year?
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Bob P
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Re: New user, new sufferer
« Reply #10 on: Nov 7th, 2002, 4:20pm » |
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Again from Doc Goadsby:
"verapamil
Verapamil is the preventative drug of choice in both episodic and chronic CH. Clinical experience has demonstrated that higher doses than those used in cardiological indications are needed, so outpatient assessment and follow-up is appropriate. The dose is increased until the cluster attacks are suppressed, side-effects intervene or the maximum dose of 960mg daily is achieved."
Here's the link to the whole article:
http://www.clusterheadaches.org/library/general/management_of_ch.htm
Cruise around and read some of the other stuff while you're there, but Shhhhhhh, it's a library ya know.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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athimmel
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Re: New user, new sufferer
« Reply #11 on: Nov 7th, 2002, 4:29pm » |
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Bob, you're a fountain of information.
I read the article (don't worry, I was quiet in the library  ) and it made for interesting reading. I was surprised that he said that topiramate was unproven. I was looking to that as a possibility if the verapamil didn't work.
He also said that CH sufferers were usually restless and irritable. Shoot, I was like that BEFORE I got these headaches. You can imagine what I'm like now! 
I guess I'll just have to deal with this the best I can. I think that being able to converse with others who know what it feels like will help.
I have responsibilities in my congregation outside of work, and this situation has made it difficult or impossible to fulfill these obligations. Since the problem isn't visible like a broken leg or a wheelchair, I'm sure people think that I must be faking it. I'm really glad to find others who know what this is like.
Thanks to all, and let me know if you have any other input on my topic. I was unsure if I really had CH, but I think the symptoms are falling into place. I look forward to conversing with everyone.
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Jackie
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Re: New user, new sufferer
« Reply #12 on: Nov 7th, 2002, 4:48pm » |
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Athimmel,
Have you taken the cluster quiz (button on the left)?
If I missed this suggestion in a previous post....sorry ???
Jacks 
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athimmel
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Re: New user, new sufferer
« Reply #13 on: Nov 7th, 2002, 5:04pm » |
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Jackie,
I took it but it was inconclusive. I think the reason is that I can't say how often it recurs, remission periods, certain symptoms aren't present, etc.
I even tried the one referred to in another link, and it came up as inconclusive as well.
It's a good thing that I didn't rely just on the survey. It took the people who are answering my postings to help me to make a more certain determination.
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Azrael
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Re: New user, new sufferer
« Reply #14 on: Nov 7th, 2002, 5:10pm » |
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Welcome to the board! Sorry that the beast is makin' shish-ka-bobs out of your cranium. Good luck!
PFDAN......................... Drk^Angel
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2late
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Re: New user, new sufferer
« Reply #15 on: Nov 7th, 2002, 5:54pm » |
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welcome to the board athimmel, i'm no expert, my eyelid doesn't droop but my nose drains on the CH side, i've been to the ER for this but not since i armed myself with info from this site for my doc, good luck! Drk, c'mon 'bro, put them kabobs on a white hot grill or somethin' ;D ...........2late
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| « Last Edit: Nov 7th, 2002, 5:57pm by 2late » |
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Azrael
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Re: New user, new sufferer
« Reply #16 on: Nov 7th, 2002, 6:12pm » |
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2late... I think the beast likes it better to ram a blistering hot steel rod through one's cranium, and chomp on it with his jagged teeth while it's still bloody.
PFDAN....................................... Drk^Angel
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captdshea
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Re: New user, new sufferer
« Reply #17 on: Nov 7th, 2002, 6:19pm » |
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Drk.
I think the beast likes baseball best, You said it best here. We all know the ball.........
David
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2late
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Re: New user, new sufferer
« Reply #18 on: Nov 7th, 2002, 6:20pm » |
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thanx for clearing that up for me 'bro , my bad ;D LMAO!! .........2late
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captdshea
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Re: New user, new sufferer
« Reply #19 on: Nov 7th, 2002, 6:22pm » |
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Athimmel,
Welcome, All the help you need is here.
David
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Linda T
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Re: New user, new sufferer
« Reply #20 on: Nov 7th, 2002, 6:51pm » |
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Hi Athimmel. I have only had 4 episodes in 18 years. Each episode was different. During my first I got hit only 1 time per day (7pm) and it would last for hours. No drooping eye no congestion. Same with the second episode. Each of these episodes lasted 3-4 months and I never woke in the middle of the nite.
Third episode only lasted about 2 weeks but I got hit 3x in the middle of each night.
This past episode I had the whole nine yards. Droopy eye, nasal congestion, hit a specific times as well as randomly throughout the day. Constant shadowing - even now as I approach my 1 year anniversary.
I believe that the pain associated with CH is probably the only common factor among us. Each one of us exhibits different symptoms at different times. Don't let the fact that your quiz's are coming back inconclusive deter you from thinking this might be CH. Do you have CH? I don't know. Please see a reputable neuro to rule out anything life-threatening.
Good luck and keep us posted.
Wishing you all PFDAN always, Linda T
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What a long, strange trip it's been!
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Marc
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Re: New user, new sufferer
« Reply #21 on: Nov 7th, 2002, 10:25pm » |
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My suggestion would be to try Oxygen - if it aborts the pain, it certainly could be Clusters.
It is very important to note that O2 will most likely NOT work unless used properly. You must use a high flow ate (often 10-12 liters per minute) using a non re-breather mask.
Hit the search button and spend some serious time reading, reading and reading some more. The stuff Bob P posted for you is only the tip of the iceberg.
Good luck!
Marc
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| « Last Edit: Nov 7th, 2002, 10:27pm by Marc » |
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Charlie
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Re: New user, new sufferer
« Reply #22 on: Nov 8th, 2002, 12:55am » |
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Welcome to our little world. My guess is that you have the real thing  I'm glad you're seeing a doctor) My eye never drooped....well maybe but no one said much. While I had a sniffle or two, it didn't amount to much and it wasn't a problem. They usually lasted less than 1/2 hour and I got them 3-5 times a day as a rule. For me, they never failed to wake me up. I can't speak about the drugs as I've not had the newer ones.
Take care and keep in touch.
Charlie
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lifeless
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Re: New user, new sufferer
« Reply #23 on: Nov 8th, 2002, 2:08am » |
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It sounds like clusters. I have had these clusters for 4 yrs. When they hit , it usually lasts for a month. My pain is own the left side of the face and gets behind the eye. The left nostril gets plugged up and my eye tears some. I felt all alone. Some friends of mine have migraines. They do not understand how my are. They think I am nuts because I do not respond to migraine meds. I went from dr to dr. I have learned more from this site than I have from the drs. I printed out info from this site and took it to the dr and said read and I need this!!! Good luck to you and just hang on for the long haul!
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marty
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Re: New user, new sufferer
« Reply #24 on: Nov 8th, 2002, 5:18am » |
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Hi Athimmel
Regarding the headache management class at Kaiser. I went through it (Kaiser, San Diego) and overall it was a good experience. They offer programs for CH only and draw a distinct line between CH and Migraines. They pretty much start out with the standard Imitrex Inj. and Verapamil. They have a problem with Coffee and that really "ticked" me off since that is a life-line for me. Another thing that they insist on is high doses of B2 and Magnesium.
Keep a diary of your attacks - they will ask for that.
Marty
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