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Mindy
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Chattanooga, TN
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New to website
Sep 28th, 2011 at 12:48am
 
I hope I am doing this right, never used a message board before! I am 37 years old and have been suffering from chronic cluster headaches for 19 years. They started after I was in a really bad wreck. I have been treated for migraines for about 5 years now but the headaches just kept getting worse and the meds my Neurologist had me on didn't help. I finally found a new doctor a couple of months ago who diagnosed me with Chronic Cluster headaches and Trigeminal Neuralgia. He said that I probably never even had a migraine but because I am female, the Neurologist didn't treat me for Cluster headaches. My headaches are always on the right side. The pain is so intense that I have thought about committing suicide several times because I just couldn't take the pain anymore. I call it "The Beast". My pain does a V around my eye going up the inside of my eye and out to my temple. My eye feels like it is being stabbed with a knife. I have been on Neurontin, Depakote and Topomax for years and they never helped. I am taking Imitrex shots now and they help sometimes but my insurance company doesn't want to pay for it. My new doctor has me on Carbamezapine which has been helping some and of course I have to take Phenergan to help with the nausea. My last episode went 4 months non-stop, I had 2 days break and then it started back up again and I am now on 6 straight weeks of pain. I am so discouraged!!!! I lost my job 3 years ago because of the headaches. Last year I went to the ER because the pain was too intense to handle any longer. The nurse gave me the "Migraine Cocktail" of Toradol, Compezine and Benedryll. He gave me the IV push too fast and it caused a blood-clot in my right arm and in my left lung. I had to be hospitalized for 2 weeks while they started me on Coumadin. It just seems like one thing after another.

I am so sorry that any of you have to suffer from these headaches but I am so glad that I am not the only one. I hate being treated like a drug seeker when I go to the ER for help. I feel so alone. I don't know anyone else who suffers from these headaches. My husband and my family are very supportive but it is still hard because they don't feel the pain that I feel. I have been married to the most wonderful man for 10 years now and I don't know how he stands living with me in this condition. Well, thanks for listening to my story. My prayers are with all of you!!!
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bejeeber
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Gnashville
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Re: New to website
Reply #1 - Sep 28th, 2011 at 1:42am
 
Hi Mindy - well that is unfortunately a familiar story around here what with the doctor not diagnosing your  CH because you are female. How unbelievably ignorant can these idiots be?!  Angry

So the medical types just aren't offering you adequate relief at all. That's very familiar also, but here's the good part - the very very good part:

Screw them! Much more significant relief, remission even, can be obtained, and is regularly being obtained by us CH'ers with non toxic treatments, and I'm about to list some critically important ones (IMO):

High flow 100% oxygen for aborting attacks. This is not the way it is routinely, mistakenly prescribed by doctors - this is much more effective. Read all about it here:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Where do chronics go when they're at the end of  their rope, and they are getting no prevention help? The lucky ones find clusterbusters.com. Many chronics have gone into remission with the clusterbuster approach. This Newsweek article and this video serve as a good introduction:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

There's a newer CH D3 regimen that if you tried it and went into remission you definitely wouldn't be the first. Plus it's something we should probably be doing anyway - it appears to be very good for general health: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

As you can see there is tremendous hope.  Smiley

Glad you landed here.  Smiley


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« Last Edit: Sep 30th, 2011 at 1:30pm by bejeeber »  

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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bejeeber
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Re: New to website
Reply #2 - Sep 28th, 2011 at 1:47am
 
One more thing - this tip on how to stretch your imitrex doses can be invaluable while you're stilll needing imitrex:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
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« Last Edit: Sep 28th, 2011 at 6:28pm by bejeeber »  

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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Bob Johnson
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Kennett Square, PA (USA)
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Re: New to website
Reply #3 - Sep 28th, 2011 at 5:22am
 
Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you
You can add your location by editing your profile. CP Member --> profile
BUT, Please!, don't post your messages at this location. They won't get the attention you want: use the appropriate sections which follow.
========================
Given your long and complex headache history, my first reaction is that your current treatment plan appears to be inadequate.

Appears you are not now using a preventive med--but perhaps we need some more history from you (why the first paragraph).

If at all possible, we encourage working with a headache specialist. This is a far more complex area of medicine than is generally appreciated and most neurologists have quite limited training with complex headache disorders.
---
LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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A specialist can work you thru a broader range of treatments in a systematic manner. Our collective experience is that so many docs simply are not up to date on the new treatment developments.

At this stage, I'd encourage you to avoid jumping from this treatment to another in hopes of finding a fix. When in pain, the urge to try this approach is understandable but a skilled hand has more potential to offer you.
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Bob Johnson
 
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wimsey1
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Re: New to website
Reply #4 - Sep 28th, 2011 at 7:29am
 
Mindy, your story could be mine. 35 years chronic. The turnaround for came when I found a neuro who understood CHs thoroughly. I left the meds you list and went to off label use of verapamil. I found relief at 480mg/day. I coupled this with high flow O2 and energry drinks and found my abort times went from 15-20 minutes down to an average of 3 minutes. The more I aborted in a short time, the more effective the verapamil seemed to be in cutting the cycle. I'm still chronic, but get hit on average once a week instead of 3-6 times a day. Follow the advice above. It's worth it. Blessings. lance
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ttnolan
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Scotts Valley, CA
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Re: New to website
Reply #5 - Sep 28th, 2011 at 1:27pm
 
Hi Mindy and welcome to your new most valuable resource.
I too have been confronted with disbelief and treated like a drug addict by professionals who have no clue what CH is all about.  Angry
I personally am an oxygen pusher... best treatment out there. Completely non-toxic, relatively cheap and out of pain in usually under 10 minutes (often under 5). Take every bit of advise here seriously. It comes from people suffering like you and is offered BECAUSE IT WORKS! Though everyone is different, we also have every type of clusterhead here as well. There are good Docs out there so don't settle for anything less than someone who you feel understands what you are going through. My rule of thumb, if the first two things they give you aren't O2 and Imitrex injections, wrong Doc... keep looking.
Keep reading, researching, experimenting... and get some O2 ASAP.
Best wishes.
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Mindy
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I Love CH.com!


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Chattanooga, TN
Gender: female
Re: New to website
Reply #6 - Sep 28th, 2011 at 10:16pm
 
I just wanted to thank each of you for your kind words and informational tips. I will check them out! Smiley
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