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Second Episode, First Diagnosis (Read 1085 times)
Nunyabeezwax
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Second Episode, First Diagnosis
Aug 19th, 2010 at 2:48am
 
Last year, out of nowhere and on my rt side, for about 2 months. I was simply dumbfounded by them. I assumed it was a one shot deal.
This year, 2 weeks ago, BAM! Except, this time, on the left side. The very first one went from 0-100 within 1 second. Scared the crap out of me, thought it was an aneurysm.
A week ago, I was diagnosed in the ER.
I thought "They are wrong. These are not cluster headaches, they aren't headaches at all." Then, I read the documentation from my discharge and started reading on-line.
Now, I can positively say "Damn It, Yes they are."
I am happy to have recieved a proper diagnosis but extremely unhappy about what my diagnosis is.
I was referred to a Neurologist, that is quite far from me plus.. I cannot afford a specialist. No insurance. So, I don't know where or how I will be able to get further medical help.
This year, the pain is far more intense, a heck of a lot longer in duration (1 to 3 hrs as opposed to 15 to 30 minutes) and not as regulated, as far as 'when' they hit. During my previous cluster, I was able to breathe through them (barely). This time, omg!, immediate knee dropping, screaming, uncontrollable sobbing, down-right horrifying pain.
Since this cluster has started, I have been on vacation from work, coincidentally. However, my two biggest fears are that I will have an attack: 1) while engaged with my children, outside of the home and 2) while I am at work or even worse-while I am the only employee on duty.
I am a portrait photographer for a large company, in a studio, housed inside of a major department store, within a huge shopping mall.
I return to work in a week. What if I'm in the middle of a shoot and I'm working alone (which is often) and I'm hit??? I'm not even sure what I'm going to tell my boss, when I go back, because I know he is going to ask me "what needs to happen?" or "what does this mean?" and I'm not sure what to say. I love my job but I don't want to frighten or anger any of our customers. I can't even think of where I'll go to at the time of an attack, there's not really any private areas, aside from the small employee bathroom that has a loud echo (much like a cheerleaders megaphone).
Grrrrr! Please advise.

Oh, and I can not express how relieved I have become since finding that I am not alone. To hear others express such similarities is a great weight lifted off my shoulders...even though I feel badly for anyone who has to suffer like this.



 
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« Last Edit: Aug 19th, 2010 at 3:22am by Nunyabeezwax »  
 
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wimsey1
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Re: Second Episode, First Diagnosis
Reply #1 - Aug 19th, 2010 at 7:48am
 
Dealing with CH's while having to work is hard. There is on this site a letter to employers and colleagues that might help you explain what is going on. The fact that your CH switched sides makes it unusual but not unheard of. Take advantage of this site by reading everything. Especially the O2 link at the left. High flow O2 (15-25lpm and upwards) with a non-rebreather mask is the first line of defense for many of us. Medical O2 requires a prescription but a GP can do that. Welder's O2 will work just as well but may need a special fitting. Find Batch on this site and write to him if you need help with this. Also, many of us have found that slamming an energy drink at the first sign of a hit (Monster, Red Bull, 5 Hour, anything that has a combo of at least 80mgs caffeine and 1000mgs taurine) can be very helpful. Other OTC's that help are melatonin (9-18mgs), kudzu, 4 Way Nasal Spray, and of course there is the clusterbuster way. I know this sounds like a lot, but you can beat back this beast. Don't just wait for it, attack it vigorously! Sorry you need to be here, but welcome to the board. Blessings! lance
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Bob Johnson
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Re: Second Episode, First Diagnosis
Reply #2 - Aug 19th, 2010 at 11:15am
 
Given the demands/nature of your work, I suspect that being aggressive about starting a preventive med and having a fast acting abortive on hand will be essential.

Given your locale, it should be possible to locate some lower cost sources of care. Call the social service dept in the larger area medical centers and ask for sources; ditto with Health Dept, with United Way organization.

Once you get Rx for a preventive (Verapamil, etc.) and the dosing is established, that will be your first line of defence.
See the PDF file below.
====
Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).
========
Print all this material to use as a discussion tool with any doc you see.
====
As an abortive, suggest you consider the following. It's highly and quickly effective; cost per dose is low given the options (even out of pocket).

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.

PMID 11576207 PubMed

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


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.


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« Last Edit: Aug 19th, 2010 at 11:17am by Bob Johnson »  
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Bob Johnson
 
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Guiseppi
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Re: Second Episode, First Diagnosis
Reply #3 - Aug 19th, 2010 at 12:11pm
 
What Bob said! Wink

I did a 30 year law enforcement career with CH, takes some juggling and careful planning, but it's gotten easier in the last decade with the advances in ouir treatments. 30 years ago my treatment regimen was 4% lidocain drops snorted up my nose, and oral cafergot! We've come a long way from there.

1: Look into a good prevent as Boib mentioned. It's a med you take daily to reduce how many hits you get and how strong they are. I use lithium at 1200 mg a day, blocks 60-70% of my hits. Verapamil is a typical first try prevent popular with many on the board. Topomax also has a loyal following.

In the middle is what's called the transitional therapy. Prednisone will completely block attacks for many, but is potentially harmful to many parts of your body long term. I will go on a 10-14 day pred taper while I'm building up my prevent, lithium. Then I'm off the prednisone and just on lithium.

2: Abortives. As previously mentioned, 02 should be your first line abortive. I can stop an attack completely in 6-10 minutes. Imitrex injectables are great for when you are away from the 02, but they are a little pricey!!!

Knowledge is power with CH, start reading like crazy! and welcome home. Wink

Joe
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Batch
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Re: Second Episode, First Diagnosis
Reply #4 - Aug 19th, 2010 at 12:18pm
 
Hey NYB,

Welcome aboard.  You'll find a lot of great information here at CH.com if you take the time to read through the responses to your posts and in particular, read the information in the menu at the left of this screen.

You're a switch-hitter as your cluster headaches have switched sides so that makes you one of the chosen few.  You're also among friends that understand what you're going through and they bring thousands of years experience in living with our disorder.

Bob has also given you some great information on the leading cluster headache preventative so I'll chime in with some info on the safest and most cost effective abortive...  Oxygen Therapy. 

Oxygen therapy is listed as 70% effective, but that is at prescribed oxygen flow rates of 15 liters/minute and below.  Most folks in the 70% category were prescribed 7 to 9 liters/minute with a non-rebreathing mask.

Many of us have found that oxygen flow rates of 25 liters/minute and above are far more effective with much more rapid abort times on the order of 7 minutes and frequently much less if you start early at the first sign of an approaching attack.

The minimum flow rate on the Rx should be 15 liters/minute and better yet, 25 liters/minute as that flow rate will support hyperventilation. 

The following link gives you all the information you'll need if you do not already have a prescription for oxygen therapy, and if you already have an Rx for oxygen therapy that's too low, this will help you get an Rx for a higher flow rate:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Take care, stick with us, and again, welcome aboard.

V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Nunyabeezwax
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Re: Second Episode, First Diagnosis
Reply #5 - Aug 19th, 2010 at 10:38pm
 
Guiseppi wrote on Aug 19th, 2010 at 12:11pm:
What Bob said! Wink

I did a 30 year law enforcement career with CH, takes some juggling and careful planning, but it's gotten easier in the last decade with the advances in ouir treatments. 30 years ago my treatment regimen was 4% lidocain drops snorted up my nose, and oral cafergot! We've come a long way from there.

1: Look into a good prevent as Boib mentioned. It's a med you take daily to reduce how many hits you get and how strong they are. I use lithium at 1200 mg a day, blocks 60-70% of my hits. Verapamil is a typical first try prevent popular with many on the board. Topomax also has a loyal following.

In the middle is what's called the transitional therapy. Prednisone will completely block attacks for many, but is potentially harmful to many parts of your body long term. I will go on a 10-14 day pred taper while I'm building up my prevent, lithium. Then I'm off the prednisone and just on lithium.

2: Abortives. As previously mentioned, 02 should be your first line abortive. I can stop an attack completely in 6-10 minutes. Imitrex injectables are great for when you are away from the 02, but they are a little pricey!!!

Knowledge is power with CH, start reading like crazy! and welcome home. Wink

Joe

Thank you for sharing that with me, I feel more optimistic about returning to work now.
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coach_bill
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Re: Second Episode, First Diagnosis
Reply #6 - Aug 19th, 2010 at 10:40pm
 
Welcome.

Coach Bill
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boy i cant wait till it's my turn to give him a headache. paybacks a bitch
WWW  
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Nunyabeezwax
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Re: Second Episode, First Diagnosis
Reply #7 - Aug 19th, 2010 at 10:45pm
 
Batch wrote on Aug 19th, 2010 at 12:18pm:
Hey NYB,

Welcome aboard.  You'll find a lot of great information here at CH.com if you take the time to read through the responses to your posts and in particular, read the information in the menu at the left of this screen.

You're a switch-hitter as your cluster headaches have switched sides so that makes you one of the chosen few.  You're also among friends that understand what you're going through and they bring thousands of years experience in living with our disorder.

Bob has also given you some great information on the leading cluster headache preventative so I'll chime in with some info on the safest and most cost effective abortive...  Oxygen Therapy. 

Oxygen therapy is listed as 70% effective, but that is at prescribed oxygen flow rates of 15 liters/minute and below.  Most folks in the 70% category were prescribed 7 to 9 liters/minute with a non-rebreathing mask.

Many of us have found that oxygen flow rates of 25 liters/minute and above are far more effective with much more rapid abort times on the order of 7 minutes and frequently much less if you start early at the first sign of an approaching attack.

The minimum flow rate on the Rx should be 15 liters/minute and better yet, 25 liters/minute as that flow rate will support hyperventilation. 

The following link gives you all the information you'll need if you do not already have a prescription for oxygen therapy, and if you already have an Rx for oxygen therapy that's too low, this will help you get an Rx for a higher flow rate:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Take care, stick with us, and again, welcome aboard.

V/R, Batch

Thanks. No, no oxygen treatment yet. I do not have anything but vicodin, from the e.r and something for nausea, but that doesn't help at all. I have read about the oxygen and would definitely love to go that route. I don't usually have the expected reactions to most medications so I try to avoid them. My system is a bit backwards. I was afraid that getting a script for O2 would be difficult, is it not?
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Skyhawk5
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Re: Second Episode, First Diagnosis
Reply #8 - Aug 19th, 2010 at 11:10pm
 
It depends on the Doctors knowledge of O2 (oxygen) to treat CH. You need to educate yourself about the proper use of O2 for CH, please read the link that Batch gave you and the one I'm giving you below.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Welcome to CH.com, the place where you'll learn how to fight CH.

Don
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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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