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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hello, everyone
        
(Message started by: Kelli on Feb 6^th, 2005, 6:00am)

Title: Hello, everyone
Post by Kelli on Feb 6^th, 2005, 6:00am

Hello, everyone. I wanted to take a moment to introduce myself, ask a couple of questions, and maybe gain some insight. You all seem like a great bunch of folks and I'm glad I found you!

For the past two weeks, I've been experiencing what, according to everything I've read, appears to be a CH. The symptoms I feel are exactly those indicative of one, though I have yet to receive a formal diagnosis. I have no health insurance and money is very tight for us right now. I have no idea how I'm going to afford to get any sort of medical treatment, especailly if this is goign to require medication for a prolonged period of time, which I fear it will if it is in fact CH's.

I had "mgraines" when I was 6 and went through several tests and scans, but a cause was never determined. Keeping in mind that this was 20 years ago, I was describing my recent onset of headaches to my father, who remembers much more about these early episodes than I do (since the only way I could get relief was to basically knock me out until the pain wnet away) and what I am experiencing now is virtually identical to what I had then.

I have got to do something. The pain is unbearable. The only thing that has even come close to this severity of pain is, well, childbirth. I sp end my nights pacing the livingroom, beating up the pillows on the sofa and, trying my best not to scream and wake up my husband and daughter. Then, I try and drag through my days on about two and a half hours of sleep. I am miserable. I was laying on the couch in tears today, my 2yr old standing next to me patting me on the shoulder whispering "It's OK, Mommy, don't cry." -- It was a pretty pathetic sight.

I can not tolerate thsi much pain for very much longer, and this isn't something I want my family to have to deal with. I am in so much pain at night and so tired that my mood during the day is horrible. I am very behind in my work as well.

My family tries to be supportive, but I just dont' think they understand the severity of what I'm going through. My husband's way of offering support for somethign that is beyond his control is to adopt an "Oh well. That's just the way it is so you're going to have to get used to it" attitude. This pain is excruciating. I NEED to have someonen to turn to.

I just don't know what to do or how to hold on until I can get to the doctor.

If this is in fact CH, which I really believe it is, how can I go about getting a proper diagnosis quickly and efficiently? From what I've read from some of your stories, that's not always such a simple task!

I'm getting desperate here.....

Please forgive the typos. I haven't slept this month.

Title: Re: Hello, everyone
Post by dagger on Feb 6^th, 2005, 8:35am

Kelli - so sorry for all the pain. Take the cluster quiz here and do see a doc. Yes, many of the meds are very expensive. One that seems to work well for most is oxygen and it is much cheaper than some of the others like imitrex. Some doctors have samples and you should explore that possibility. Best of luck to you. dagger

Title: Re: Hello, everyone
Post by Melissa on Feb 6^th, 2005, 8:36am

Hello Kelli,

Well, the fact you can't sleep, or sit still, while having the pain is definately a characteristic of CH. Have you taken the "cluster quiz" from the buttons on the left? Also, how long do your attacks last for and how frequent do you get them? Once a day? Several times a day? Every other day? If you want to research more into clusters, also click on the OUCH button to the left.

I'm very sorry to hear of your pain and hope you can get to the bottom of it! Even if you do have clusters, they won't kill you and there are meds and other techniques out there to help you get through it. Remember, the pain always ends.

take care,
melissa

Title: Re: Hello, everyone
Post by bigred on Feb 6^th, 2005, 11:27am

Kelli im sorry to hear of your HA.
If it is bad enough, go to the emegancy room and get a doctor to see if he can help with the samples they have their. Its a federal Law that you must be treated in an emergancy sitution. You can figure out how to get a regualar doctor from one of those assisting you in the ER. Do this all at the same time so you wont need to make return trips every time you have an episode. Ask for a good nueroligist on staff. Explain in detail the frequancy and pain leval of your CH.
By the way tell you uncareing husband to do the right thing and get some type of insurance on the family he took resposibility for. If the shoe were on the other foot you can bet his sole purpose would be to find a way to end his suffering.
Sorry I was so hard on him but he has no idea of the devistation this medical problem will have on the whole family, if something is not done soon to get you the help you need.
LOL goodluck
bigred

Title: Re: Hello, everyone
Post by Bob_Johnson on Feb 6^th, 2005, 11:46am

Yes, do check the cluster test (left buttons); also go to the OUCH site and see their material on Dx.

Print this out: http://www.headachedrugs.com/pdf/HA2005.pdf

and also explore this site. Excellent material here.

If you have a primary care doc, print out the following and ask your doc for samples. IF it works to abort an attack, even if you have to buy them it will cost less than Imitrex which is the first choice drug.

1: Headache 2001 Sep;41(8):813-6

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.

--------------------------------------------------------------------------------

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.

If this does not work for you, ask your doc for an Rx for Ergomar. It's an old time med which is not first choice but can be helpful to abort an attack and it's not very expensive. The trick is to use it at the first sign of an attack.

==========
You have likely seen that Verapamil is the med of choice to prevent clusters. Get it if you can do so.

Stay in touch so that we can help you around the $ problem.

Title: Re: Hello, everyone
Post by debs on Feb 6^th, 2005, 1:25pm

Hi Kelli,

So sorry you are having such a hard time. I hope you can get some relief soon. I am new to this board too, and if indeed you have CH, you will find lots of good info and caring words here -- :)

Please, please, get to a doc as soon as you can, you need a diagnosis before you can be treated. bigred's suggestion to go to the ER sounds like a good bet, be sure to go as soon as you feel it coming on. It will be best if you are having your HA when you arrive. But --be ready to go --many docs won't remember learning about CH in med school. Print out some of the CH literature that Bob_J suggested and have it ready. Insist on the neuro at the ER... you may be there all day or all night... have your husband insist...maybe have stuff ready to go that will entertain your family while they wait.

I know as much as you hate to do it, wake up your husband when you are having an attack, to where he is really awake, so he can see what you are going thru. Let him see the severity. You need your family right now, you can protect them later.

Is there a clinic in your town? That may also be an option --again be prepared with literature, you might get lucky and get a GP who will be willing to learn about CH, if that's what you have.

Regarding meds --the preventative drugs are relatively cheap, and they work. O2 works for many. Cafergot is another old-time abortive med, same as ergomar, but with caffeine added, which seems to make the drug more effective. They come in suppository form (I know, yuck), but it works a lot faster than pills, and should be fairly cheap. And -- always ask for samples, of everything, every time you go to the ER, clinic or doc.

Take good care and let us know how it goes.
hugs [smiley=hug.gif]

Debbie

Title: Re: Hello, everyone
Post by Kelli on Feb 6^th, 2005, 3:06pm

Thanks for the advice and warm welcome, everyone. It's given me some good ideas on how to get the help I obviously need, and provided lots of good information. I really appreciate it.

Regarding my husband... It's not that he doesn't care. He really does. He is usually very loving and incredibly supportive. He just has a hard time dealing with situations that are beyond his control, and I don't think he realized the severity of what I'm going through. I think it started to sink in this morning, though when he saw the toll this is taking on me. There is nothing like stumbling into the room at 7am, shaking and unable to speak through the pain to open one's eyes, I guess.. He tried to call in to work today so he could stay home and take care of me / let me rest during the day when the pain isn't bad, but where he works is small, only 4 office staff, and no one was available to cover for him. He's been calling today to check on me, and my Dad has come by a couple of times to check in on me and help take care of my daughter. We will try and get something sorted out this evening.

As for not having insurance, that's not a choice, believe me. There have been several times when we could have really used it, but money has been very tight this past year. Hopefully that will change this year. Our daughter is covered through the state's children's health insurance program, and he and I have both been doing without for a while now.

That was all so much easier when we lived in Canada....

I did take the quiz, and I pretty much fall right into the CH questions, and not much else.

I may have a mild headache during the day, but typically my pain starts anywhere from 9pm-2am and can last anywhere from 6am-10am. The headaches come on suddenly and are severe. the pain si primarily located in my right cheek, but tends to spread to my nose and top teeth. I get a plugged up nasal cavity and sometimes experience warmth or a drooping eyelid on the right side. The attacks can be anywhere from 10mint o 3hrs in length, most are about 45 minutes, and I can have as many as 4-6 at a time.

The only other relevant medical fact that I can think of that could possibly be contributing is that I have very poor eyesight. I have retinopothy in my right eye, with reduced vision of around 20/180 and have been blind in my left eye since birth. I had my left eye removed when I was 17, due to pain from decreased bloodflow to the eye. I have never experienced headaches related to my eyesight, though, except for the occasional tension headache from eyestrain, which feels completely different.

My father also has very severe allergies that I seem to inherited some of.

I apologize for the long post. Probably not much of it is useful ;) but it really helps to have someplace to vent my frustration about this horrible pain to others who know what it's like.

Title: Re: Hello, everyone
Post by Bob_Johnson on Feb 6^th, 2005, 9:33pm

There are a number of eye disorders which can produce headaches which mimic clusters. Given your history, a good workup would be nice otherwise you can end up treating the wrong disorder.

Title: Re: Hello, everyone
Post by Melissa on Feb 6^th, 2005, 10:33pm

I agree with Bob about the medical workup. The best thing to do is rule out anything else, such as eye problem, and if it's not that, then see if you can get a referral from your general practioner to see a neurologist. If you click on this link: http://www.clusterheadaches.org/doctors.htm you may find a doctor in your area who is recommended by other cluster headache sufferers.

So sorry for you pain Kelli and I hope you can get some answers and relief!

melissa

Title: Re: Hello, everyone
Post by sandie99 on Feb 7^th, 2005, 8:46am

Kelli,

[smiley=hug.gif]
I am so sorry for the hard time your head has given you.
I know that it can be hard for others to fully understand CH. Once you've been firmly diagnosed, show your husband some into about CH. Let him know what you need him to do.

Finding a good doc is important. It's also good to be aware that it might take a while before you'll find the medication combination which works for your head. But you will find it! :)

Best wishes & PF days,
Sandie

Title: Re: Hello, everyone
Post by Kelli on Feb 9^th, 2005, 2:09am

I wanted to thank everyone again for all of the advice and support and kind words and emails I have received since posting this. if I didn't respond to your email, it's been a very hectic few days and I apologize, but I did read every one and am very grateful.

The headaches have eased up over the past couple of days and I have actually been able to sleep some, thank goodness.

I'm seeing a retinologist tomorrow afternoon (which voc rehab pays for) to rule out any possible connection with my eyesight. Then, if need be, he can refer me straight to a neurologist from there.

Title: Re: Hello, everyone
Post by Melissa on Feb 9^th, 2005, 8:08pm

on 02/09/05 at 02:09:04, Kelli wrote:

I'm seeing a retinologist tomorrow afternoon (which voc rehab pays for) to rule out any possible connection with my eyesight. Then, if need be, he can refer me straight to a neurologist from there.

That's great news. Please let us know the results, whatever the outcome!

Take care,
melissa

Title: Re: Hello, everyone
Post by Kris_in_SJ on Feb 9^th, 2005, 8:50pm

Hi Kellie,

So sorry you are suffering so!

My best advice is to be truly honest with whatever neurologist you end up with about your insurance issues. Also make friends with his nurse. With any luck at all, you'll end up with pocketsful of samples.

The good news - preventatives like Verapamil are very inexpensive. It's those abortive meds that are the bitch in terms of expense. Keep us informed, and hang in there!

Many Hugs,

Kris