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(Message started by: athimmel on Nov 7^th, 2002, 3:12pm)

Title: New user, new sufferer
Post by athimmel on Nov 7^th, 2002, 3:12pm

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.

Title: Re: New user, new sufferer
Post by Margi on Nov 7^th, 2002, 3:17pm

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.

Title: Re: New user, new sufferer
Post by echo on Nov 7^th, 2002, 3:20pm

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.

Title: Re: New user, new sufferer
Post by Jabeen on Nov 7^th, 2002, 3:21pm

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. :) :) :)

Title: Re: New user, new sufferer
Post by athimmel on Nov 7^th, 2002, 3:22pm

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.

Title: Re: New user, new sufferer
Post by Bob P on Nov 7^th, 2002, 3:30pm

Why are you not supposed to take more than 3 Maxalt per month?

Clusterheads take 2 a day. Some a lot more than that.

Title: Re: New user, new sufferer
Post by Bill_C on Nov 7^th, 2002, 3:31pm

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.

Title: Re: New user, new sufferer
Post by athimmel on Nov 7^th, 2002, 3:40pm

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

Title: Re: New user, new sufferer
Post by Bob P on Nov 7^th, 2002, 4:08pm

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.
~~~~~~~~~~~~

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."

Title: Re: New user, new sufferer
Post by athimmel on Nov 7^th, 2002, 4:14pm

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?

Title: Re: New user, new sufferer
Post by Bob P on Nov 7^th, 2002, 4:20pm

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.

Title: Re: New user, new sufferer
Post by athimmel on Nov 7^th, 2002, 4:29pm

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! ;D

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.

Title: Re: New user, new sufferer
Post by Jackie on Nov 7^th, 2002, 4:48pm

Athimmel,

Have you taken the cluster quiz (button on the left)?

If I missed this suggestion in a previous post....sorry ???

Jacks 8)

Title: Re: New user, new sufferer
Post by athimmel on Nov 7^th, 2002, 5:04pm

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.

Title: Re: New user, new sufferer
Post by Drk^Angel on Nov 7^th, 2002, 5:10pm

Welcome to the board! Sorry that the beast is makin' shish-ka-bobs out of your cranium. Good luck!

PFDAN......................... Drk^Angel

Title: Re: New user, new sufferer
Post by 2late on Nov 7^th, 2002, 5:54pm

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

Title: Re: New user, new sufferer
Post by Drk^Angel on Nov 7^th, 2002, 6:12pm

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

Title: Re: New user, new sufferer
Post by David Shea on Nov 7^th, 2002, 6:19pm

Drk.
I think the beast likes baseball best, You said it best here. We all know the ball.........
David

Title: Re: New user, new sufferer
Post by 2late on Nov 7^th, 2002, 6:20pm

thanx for clearing that up for me 'bro , my bad ;D LMAO!! .........2late

Title: Re: New user, new sufferer
Post by David Shea on Nov 7^th, 2002, 6:22pm

Athimmel,
Welcome, All the help you need is here.
David

Title: Re: New user, new sufferer
Post by Linda T on Nov 7^th, 2002, 6:51pm

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

Title: Re: New user, new sufferer
Post by Marc on Nov 7^th, 2002, 10:25pm

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

Title: Re: New user, new sufferer
Post by Charlie on Nov 8^th, 2002, 12:55am

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

Title: Re: New user, new sufferer
Post by lifeless on Nov 8^th, 2002, 2:08am

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!

Title: Re: New user, new sufferer
Post by marty on Nov 8^th, 2002, 5:18am

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

Title: Re: New user, new sufferer
Post by athimmel on Nov 8^th, 2002, 10:20am

Man...I'm overwhelmed!!

Such a response to a little posting. Thank you to everyone who has responded. It really does help. I was able to take care of my responsibilities last night (for the most part), but I think that finding this board really helped me a lot.

To those who responded to welcome me: Thank you very much. It's comforting to know that you are out there.

Now...for the individual responses:

Linda T. - Man, it sounds like it gets worse after each remission. I hope that isn't the case! I appreciate knowing that not everyone has all of the symptoms. I have an MRI scheduled for tomorrow, and I hope to speak with a neurologist soon. I'm not sure that I want this to be CH, but I sure DON'T want it to be a tumor! Thanks for the kind wishes.

Marc - I've read on a couple of websites (esp. WebMD) that oxygen is one option. However, if you know how Kaiser is, they don't like to issue equipment like that unless they have no other choice. So, I think that the possibility for trying the oxygen is pretty slim. Maybe if it gets bad enough and I scream at my doctor...? Thanks for the idea, though.

Charlie - No one has mentioned a drooping eyelid to me either. Maybe you're right...maybe they're just looking the other way to avoid staring at me and thinking, "What's the deal with his eye?" ;D
After being awakened twice with headaches, I can't imagine what it's like to wake up 3 times per night. Are you always tired in the morning? I would think that you would have to be! I hope that you get sleep sometimes, at least. I'll definitely keep in touch. After just one day, I see the huge benefits of being a part of this community.

Lifeless - I get the feeling that people think I'm crazy, too. My wife has migraines, but she can see that my headaches are different from hers. She's very worried about me. I guess she understands what I go through when she's suffering. It's a helpless feeling, seeing the one you love go through that much pain. I think that my experiences with her has helped me to explain things to her, and to at least allow her to feel like she's helping. Even if she can't do much, if I make her feel like she's doing something, it lessens the feeling of helplessness.
It's funny that you mentioned that I should "hang in for the long haul." I told my wife that this could be a very long-term thing, and that we just have to cope the best that we can. Thank you for the kind wishes.

Marty - Thanks for the input on the class. I started to keep a diary, but some of the headaches were rather indescribable. I couldn't really say when they started and when they ended. I guess I'll try again so that I have something to give to the doctor during the class.
As for meds., I started with Maxalt and Nortriptylene. The Nortriptylene was useless (except it gave me some pretty major side-effects) and I stopped that. Then, they prescribed Depakote(?), but after reading about the side-effects and dangers, I refused to take it. The doctor actually called me a fool to his nurse, when he thought I wasn't listening! He tried to prescribe another anti-depressant, but he didn't check my medical history to see that this one was contra-indicated for my health issues. Finally, I changed doctors. This new one has prescribed Amerge (which didn't work as well as Maxalt, so I'm back with Maxalt), and Verapamil. He also ordered an MRI to eliminate the possibility of tumor. We'll see how this doctor works.
Were you able to get a referral to a neurologist? If so, how many tries did it take you?
I have some magnesium at home that I'll start taking. It's tough to find B2 in my local stores. They sell B complex all over the place, but rarely do they sell just B2. I'll keep looking.
Thanks very much for the input. I'd really like to hear more about how you are dealing with Kaiser on this matter. Only Kaiser patients know what we go through with this particular HMO. They're in a world of their own, aren't they? ;)

Thanks again to everyone. If you have any other advise, or some advise on how to get the most out of this site, please feel free to let me know.

There's a line from a book that I really enjoy, and it kind of fits how I feel after an attack from the CH beast. It's from the Hitchhiker's Guide to the Galaxy, describing how bad something can feel:

It feels rather unpleasantly like being drunk.
What's unpleasant about being drunk?
Ask a glass of water.

Subtle, but strangely accurate. Thanks again.

Title: Re: New user, new sufferer
Post by SFChris on Nov 8^th, 2002, 1:00pm

athimmel,

I see that you live in Northern California, but you don't say which city (NorCal is huge). I live in San Francisco, and the San Francisco Clinical Research Center is conducting a cluster headache research project. It is being led by Dr. Jerome Goldstein, who is a very noted neurologist (he is also one of the doctors recommended on this board). Not only is it free, but they will pay you to participate (paid by Winston Labs who's product is being tested). So, it may be a good supplement to your Kaiser insurance.

If you are very far north of San Francisco, you should make contact with the lovely Linda Howell who may be able to recommend another doctor.

Good luck,

Chris

Title: Re: New user, new sufferer
Post by athimmel on Nov 8^th, 2002, 1:03pm

Hi SFChris --

You're right. NorCal is a very large area. I'm in the Sacramento area.

The problem with these trials is that they seem to be looking for people who have suffered with CH for awhile. I have only had them for about 4 months.

Who is Linda Howell? (Forgive my newbie ignorance.) :P

Thanks for the advice.

Title: Re: New user, new sufferer
Post by SFChris on Nov 8^th, 2002, 1:13pm

I assure you they need more participants in the trial. My cycle was ending when I was accepted, so I haven't actually tried the medication. They call me every month hoping (that's right HOPING) my cycle has returned. The San Fran trial has only one active, in cycle participant. Worth a call - they will arrange to have you meet the doctor.

Who is Linda Howell? She is a terrific lady who is very active on this board. She lives in the Redding area (very, very far NorCal).

Chris

Title: Re: New user, new sufferer
Post by athimmel on Nov 8^th, 2002, 1:15pm

Steve,

How do I get a hold of the doctor in San Francisco who is conducting this trial? I would rather not make trips to San Francisco, but if I can get some relief...

Adam

Title: Re: New user, new sufferer
Post by SFChris on Nov 8^th, 2002, 1:23pm

Steve? Who's Steve? ::) LOL

Adam,

The top posting on this message board has a link to the Clinical Research Trial. Follow the link to San Fran - Dr. Goldstein. All the info is there. Good luck.

Chris

Title: Re: New user, new sufferer
Post by athimmel on Nov 8^th, 2002, 1:26pm

Whoops. Sorry Chris...Dealing with so many names, here and on the job, I don't know what I'm doing! :-[

I tried that. That's where I found out that they are looking for people that have had episodic cluster headaches for 4 years. Are you sure they would be interested in a 4 month sufferer?

Title: Re: New user, new sufferer
Post by marty on Nov 8^th, 2002, 1:33pm

Just a note regarding the O2..

Kaiser does not cover this (even though I am supposed to be on the "Caddilac" plan).

I paid for it myself and the cost is not bad, approximately $35.00 / month. That inlcudes the little cart and three tanks - Refills when ever i need them at a small cost - so it is not that bad. All you need to do is to get your Dr to write you a prescription. Make sure that it gives you 10 liters output. My experience is that they want to start out with a smaller output - I'm told that less than 10 Liters does not really do any good. As for me, the O2 does not help me. I have tried and tried but now it just sits in a closet taking up space. What really helps me is two large cups (7-11 kind) of very strong coffee if I start drinking it fast when the CH is starting up.

Good luck and, by the way, the MRI at Kaiser is "standard operating proceedure" - they will give an MRI to any and all that they treat for headache related problems.

Marty

Title: Re: New user, new sufferer
Post by athimmel on Nov 8^th, 2002, 1:38pm

Hi Marty!

Thanks very much for the info. Sounds like typical Kaiser to me. I may try the O2 if I'm not getting any kind of results in other ways, but thanks for the advice on how to go about getting it. It's good to know.

The MRI is just to check for tumors, I guess. But let's face it, CH is definitely different than a tumor. I'll get the MRI to be sure, though, and to eliminate the possibilities.

I'm curious about the coffee, though. I thought that sufferers were supposed to avoid caffeine. ??? I know that it seems to help in some cases. Were you advised to avoid it and decided that it helped you, or did your doctor say to give it a try? I don't take in caffeine in any kind of large doses. Maybe 1/8 cup every few days. (Just if I need a boost. I've avoided caffeine for a couple of years now.) Does it help you a lot?

Title: Re: New user, new sufferer
Post by marty on Nov 8^th, 2002, 2:12pm

Yes it helps me!!! By the way, did you know that himmel means "sky" in Swedish ;D.

I started having CH attacks in 1997. I was diagnosed with "chronic sinus problems". The penicillin did not help - the X-rays showed clear sinuses - but major doses of penicillin was prescribed - did not help.

So, I firgured that if I had sinus problems (no reason to doubt that), what I needed was heat and moisture. So I made coffee, strong and lots of it. It seemed to help. back in 1997 - 98, my CH was not that bad, one attack per night - lasting 15 - 20 minutes or so. During the first couple of years (as I remember it), the coffee turned out to part of a routine so when I really got hit in 1999, by now it had stabilized with one cycle per year lasting about 2 months, the coffee became my life line. I always had a pot waiting form me.

I do believe that there are two things that the coffee does for me; #1: The caffeine opens up the blood vessels and "makes the hurt go away" - I know that it does not really, but that leads me to the second reason; I know that each and every one of us have a special routine, a special and very personal "dance" that we do every single time that we are hit. Some stand in a hot shower - other stick their head in the freezer. I got this picture in my head: standing in a bathtub filled with ice-cubes with a towel wrapped around the head, while taking a steaming hot shower and drinking coffee at the same time ;D ;D

So the coffee is my way of dealing with my attacks - there are a few on this board that agree with me - others cant stand any heat what-so-ever when hit.

Marty

Title: Re: New user, new sufferer
Post by athimmel on Nov 8^th, 2002, 2:19pm

Marty,

I didn't know it meant that in Swedish. I know it means "heaven" in German, though. I certainly haven't felt "heavenly" these days, though. ;D

I understand what you mean about routine. I can see where that might help. Since I have tried to avoid caffeine for the most part, I am hesitant to become addicted to it again, as I am probably going to grow dependent on these medications that my doctor is throwing at me.

As for the picture you paint...hmmmm...I think that image is a bit too odd for me to visualize. That's probably a good thing, too. :D :P

I don't know what will help me. My "dance" consists of grabbing my head and looking for a guillotine. Funny...there's never one around when you need one. ;)

Thanks for the advice.

Title: Re: New user, new sufferer
Post by Lenny on Nov 8^th, 2002, 2:51pm

on 11/07/02 at 22:25:18, Marc Oxygen does not work for everyone!!!!! wrote: