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jberzins
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Nov 18th, 2008 at 8:57am
 
i discovered the old message board several days ago and was happy to know i am not the only one. however, i realized quickly nobody had posted in several months. anyway, glad i found new site. long story short. i have had these for about 20 years, off and on. up until a month ago i had been pain free for about 2 1/2 years. i still had about 10 maxalt tablets just in case. then, about a month ago they came back. the only thing that really changed is that my doctor had detected high blood pressure and gave me medication to bring it down. well they came back with a vengence and it has been pretty much every day. went back to neurologist got 9 more maxalts, all insurance would allow, and im trying to break this new cycle. i stopped taking the blood pressure meds, neurologist put me on verapimil,sp?, i am now also using oxygen treatment. it seems to be helping but still having them on a regular basis. so thats my story, sorry it took this long to find others and i hope i didnt bother with this tale. i am interested in maybe getting a large tank of oxygen, and possibly looking at a mask. any suggestions would help.
thanks
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maalstroom
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Reply #1 - Nov 18th, 2008 at 9:18am
 
Hi and welcome!

The oxygen works as an abrtative, not as a preventative such as Verapamil. 
When you get the lower hits, try chugging an energy drink rather quickly, it can help and does so for a lot of people.
Make sure though it's containing both taurine and coffeine, so that would be the likes of Red Bull and such.
Keep reading here, ask anythng you feel like, there's always someone around!

Painfree wishes from the Netherlands.

Pascal.
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...AND AS A FINISHING TOUCH, GOD CREATED THE DUTCH.
 
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Garys_Girl
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Reply #2 - Nov 18th, 2008 at 9:22am
 
Welcome, and you've found the right place!  Verapamil is a standard line of preventative treatment for many suffering episodic cluster headaches.  There is a lot to learn, and I highly recommend you spend some time, especially in the Medications & Treatments forum!  Many neuros are not well informed about clusters, and knowledge is a powerful tool.

Verapamil is also a drug designed to lower blood pressure (a calcium channel blocker) - your neuro was aware of the meds you're currently on when he/she prescribed it?

As to a proper mask, check out the "oxygen info" link on the left.  It is essentially a non-rebreather mask with a 3 litre bag, which is important in using 02 properly to abort the attacks.

Many also use caffeine - energy drinks with a Taurine supplement are often quite effective in aborting attacks when 02 isn't convenient.  Many here use Red Bull, though there are quite a few to choose from these days.

Cluster Headaches affect the adrenal system, so many use a Melatonin supplement (to aid with sleep and the night time attacks), and blood tests are often appropriate, as many clusterheads, in cycle, have low testosterone, and a testosterone supplement can affect the attacks (in some cases eliminate them).

Sorry you had to find us, but glad you did.

Wishing you pain free days and nights!

Laurie
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jberzins
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Reply #3 - Nov 18th, 2008 at 9:51am
 
thank you, i have always had an aversion to power drinks, but i am willing to try anything. wonder why they help. i am pretty convinced that the oxygen is a good thing, but still a little hesitant about using the welders oxygen. it seems as if it is the same,im just a little nervous. i am going to ask my neurologist for a rebreather mask, and i higher regulator. on the 20th insurance will allow me to buy 9 more maxalt so then i will have a total of 10. yippy
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maalstroom
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Reply #4 - Nov 18th, 2008 at 10:00am
 
I'm not too fond of energy drinks myself, and only started it after getting the advice here.
It's actually the combination of taurine and coffeine that does the trick. Taurine speeds up the work of caffeine.

Not sure about the welders oxygen, as I get mine prescribed by the neurologist.
Personally, I'm not a fan of Maxalt melting tablets, as they take so long to take effect. If they ever do, but that's just my experience.
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...AND AS A FINISHING TOUCH, GOD CREATED THE DUTCH.
 
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Rolomatic
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Reply #5 - Nov 18th, 2008 at 10:08am
 
Jberzins,

Welders O2 comes from the exact same oxygen plant as the medical O2. The only thing to check on is the tank. As long as the tank has never been used for a poisonous gas it’s OK. If the tank was used for CO2 or nitrogen it will do just fine.

Roland. Cool
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Guiseppi
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Reply #6 - Nov 18th, 2008 at 10:37am
 
Welcome to the board Jberzins...about the mask DO NOT GET A RE BREATHER MASK!!!! It defeats the purpose. For oxygen to have the vaso constrictive effect you need to halt a head ache, your lungs must get ONLY oxygen. No outside air, NO EXHALED AIR.  (If they gave you nasal canulas, pitch them in the trash they are next to worthless for most of us) All will dilute the pure 02 effect and substantially reduce it's effectiveness.  You want a NON RE BREATHER MASK,  with a high flow regulator, and you want to get on it at the first sign of an attack. Waiting even 3-5 minutes will really reduce its effectiveness for me.

That blood pressure med your doc had you on, Verapamil, is one of the first line meds as a preventative medication for CH. A preventative is a med you take on a daily basis, to reduce the frequency and intensity of your hits. Might be worth revisiting the verapamil.

You have much reading to do to educate yourself and help your doc plan your treatment, we'll walk with you every step of the way!

Guiseppi
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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jberzins
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Reply #7 - Nov 18th, 2008 at 12:03pm
 
hello,
im sorry i didnt make myself clear, the doctor gave me some other kind of blood pressure medicine, not sure what it is called. the neurologist gave me the verapamil. i have stayed on the verapamil, but discountinued the other stuff the first doc gave me. he wants me to try something new, but i am scared to take it until i get more maxalt. which should be in a couple of days.
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Guiseppi
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Reply #8 - Nov 18th, 2008 at 12:25pm
 
Oh good, be patient with the verapamil, can take a couple of weeks to have a positive effect on your ch. I use lithium, which takes about 10 days to build up in my system. I use a 10 day prednisone taper during that time to keep the CH at bay. Hoping the neuro gets you som e relief soon, these things really suck!!

Guiseppi
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Charlie
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Reply #9 - Nov 18th, 2008 at 6:40pm
 
Hi and welcome aboard but I'm sorry that you have to deal with this horror. You'll find that these people know their stuff and have some good ideas.

My contribution is a technique that works for me:


                                         Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie      
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Kevin_M
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Reply #10 - Nov 18th, 2008 at 7:04pm
 
jberzins wrote on Nov 18th, 2008 at 8:57am:
neurologist put me on verapimil,sp?, i am now also using oxygen treatment.


Not a bad appointment.


Quote:
i am interested in maybe getting a large tank of oxygen, and possibly looking at a mask. any suggestions would help.


As Guiseppi mentions:

Quote:
You want a NON RE BREATHER MASK
 

Also though, anyone with info on the O2ptimask or if  Clustermasx is available?

Verapamil effectiveness can depend on appropriate dosage and it's good to stay in touch with your doctor on how it is doing.



***just moved lower to a thread that addressed masks.  Thanks for the link, Bill.
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« Last Edit: Nov 18th, 2008 at 7:11pm by Kevin_M »  
 
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