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Topic: New here (Read 276 times) |
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Ferrit
New Board Newbie
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Hi folks I am new here but not new to cluster headaches.
Most of you know what they are like so describing them wont help.
A hot ice pick up your nose comes to mind.
I have had them for 15 years.
Last bout was Dec 26th to late march of 2004
I thought wohoo 2.5 years, i am done with these.
Boy was I wrong
The most recent bout started early October and i think a very long period of high high pressure (summer was 5 months of clear weather) ended in early October with some vicious low pressure storms. Since them I have had a number of them and have used Migranol nasal spray
I now think it doesn't really work and its more of a comfort thing so i have quit it.
Does terrible things to my sinuses. I am on verapamil 240 per day after consulting again with my neurologist. I think the verapimil has mediated them some in intensity. Shall we say from 9.5/10.0 down to 5.0
I also have DHE injection capsules and my wife can administer the same thing they use at the hospital.
Whats really strange is i can have a couple days of none and actually get a night or 2 of sleep.
A few things set them off no matter what is happening.
Movies at the theater are a complete no-no.
Also any strenuous physical exercise will do it as well.
A funny thing about them is that I always know when they will quit because i start burping.
I never know how many I am gonna get or if I will get none. Mostly they come at night though 2 to 4 am is a prime time
I also have to watch out in the daytime when I am tired if I lay down for a nap, thats a prime time as well.
Just today I have begun a short term predazone medication thing to see if its possible to stop them completely.
A couple of random thoughts
Emergency rooms and cluster headaches just dont mix.
People there rarely know anything about them and take too much time getting you any help at all.
If your normal doctor doesn't know about them find one that does cause having a sympathetic doctor who knows means a lot.
Mine has actually phoned me a number of times and asked how I am doing and how the medication is working
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cynjeep89
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Re: New here
« Reply #1 on: Dec 19th, 2006, 6:29pm » |
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You are so fortunate to have found a doc who actually called to check on you. Had to go thru about 5 neurologists to finally find one with some sense of compassion and who works with me. He is a gem!
Yeah, CHs are sneaky little buggers. Just when you think they are gone, they have a way of blasting back into your life but at least now you know how to battle back.
Best wishes to ya for some PFDAN.
Cyn
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barry_sword
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Re: New here
« Reply #2 on: Dec 19th, 2006, 6:44pm » |
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Hello Farrit. Pleased to meet you. I am on Varapanil and is working for me. I am in my cycle now but basically PF except for some nasty shadows.
Welcome, Barry
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QUIT SMOKING SEPT. 03 2005,
http://barrysword.blogspot.com
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barry_sword
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Re: New here
« Reply #3 on: Dec 19th, 2006, 7:38pm » |
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Spelled it like it sounds. Spelling error,sorry. 
Barry
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QUIT SMOKING SEPT. 03 2005,
http://barrysword.blogspot.com
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Richr8
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Re: New here
« Reply #4 on: Dec 19th, 2006, 7:50pm » |
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Hey Farritt!
Welcome aboard the train wreck to hell! You and I have very similar experience as far as the length of time suffering and the timing and length of our cycles. Nice to see that yo had a break a couple of years ago and sorry to see it did not last. The best thing that has happened to me since I started this was finding this place. Wish I had more to report, but it sounds like you have a good Doc and are using some of the expected treatments. The pred tapers will break my cycle, but do lots of other damage both physically and psychologically, so i resist until they are just unbearable which probably extends my cycle. Of course pred does not have the same effect on everyone. Hopefully it is kinder to you and brings you some relief.
I did not read where you have tried Oxygen, and is a primary abortive for many of us. My cycle has been ramping up over the last several weeks and so far I am med free but relying heavily on O2. I even carry it in my car now which has allowed me to attend several events and get almmost immediate (3-5 minutes) with just a quicjk jaunt to my car. In prior years, I would avoid going out in cycle for fear that I would be hit while away. So, if you haven't tried it, please do and let us know how it works for you.
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| « Last Edit: Dec 19th, 2006, 8:39pm by Richr8 » |
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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Linda_Howell
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Re: New here
« Reply #5 on: Dec 19th, 2006, 8:35pm » |
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Ferrit,
240mg. of Verapamil is not enough. Please ask your Dr. to "up" that for you. Many here are on much higher does.
Please do check into Oxygen. Here is a link to read and mkae sure you get a regulator that goes to at least 12 to 15 lpm, has a nonrebreather mask too.
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Ferrit
New Board Newbie
Posts: 7
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Re: New here
« Reply #6 on: Dec 19th, 2006, 11:34pm » |
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First off thanks all for the warm welcome.
Also sorry about the random thought post. I tend to think like that when I am in a cycle.
Linda I was on 180 and have just gone to 240. I think i will see how the prednazone does. I started it this am
The 12 pills of Christmas hehehe
Indeed a caring doctor with knowledge about these really is a huge blessing. She is young and facinated as I am her only cluster patient
My last doctor told me flat out when I asked about verapimil that he would in no way prescribe it for cluster headaches.
I had to push him hard to get me to a neurologist.
That in istself tells me many don't know about these headaches and don't care to learn.
Now that is lame. So much for the Hippocratic oath.
Anyway I am about 12 hours into this treatment and I had a good day and I had a lot of energy
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Charlie
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Re: New here
« Reply #7 on: Dec 20th, 2006, 10:39pm » |
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Welcome to the madhouse Ferrit.
A terrific description of clusters by the way and I see nothing wrong with your random thoughts.
These people know what they're doing so stick around.
You might give this a try. It worked 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. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. 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. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
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.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head 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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There is nothing more satisfying than being shot at without result---Winston Churchill
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Bob_Johnson
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Re: New here
« Reply #8 on: Dec 21st, 2006, 11:16am » |
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A value of this article is that it gives you some basis for discussing options with your doc.
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Bob Johnson
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