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Just got on a new treatment that seems to work (Read 321 times)
Magicman516
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Just got on a new treatment that seems to work
Jul 7th, 2018 at 5:42pm
 
I found a doctor who specializes in headaches and is involved in research as well. He was a family doctor until his daughter committed suicide due to headaches at the age of 17. So he switched to focus on headaches. This works for me if I get these when the cycle is early on. I haven't tried it mid cycle yet. I get a nerve block injection at the base of my skull blocking the greater occipital nerve on each side. Insurance doesn't cover it unfortunately and costs me $200.00 but the theory is that it resets the nerve some how. I can say that I've been on this treatment the past year and a half and when the headache cycle begins I get the shot and they are gone. I've done the treatment 3 times in the past year and a half when in cycle. Once he was out of town so I started a prednisone cycle. When that finished the headaches came back and I went in for the shot. Got rid of them once again. Usually good for 3 to 6 months.

I'm in Utah and the guy is named Doctor Dan Henry. He's done interviews about his daughter and family for the local news.

Here's an article about him from the local tv news

can't post links but google "doctor dan henry interview" and it's the first linking to kutv news
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« Last Edit: Jul 7th, 2018 at 5:54pm by Magicman516 »  
 
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Mike NZ
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Re: Just got on a new treatment that seems to work
Reply #1 - Jul 8th, 2018 at 8:31pm
 
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Interesting article about how the doctor's daughter had pretty severe migraines which led her to take her own life, despite all he could do.

It also really shows the impact of chronic headaches of any type and what they can do to someone. Whilst CH is sometimes referred to as "suicide headaches", the impacts go beyond just CH and cover a multitude of chronic pain conditions.

Great that you're working with a doctor who truly understands the impact of CH and is very much on your side to improve things.

It's good that you're getting the nerve block on both sides as often when people just have it done on one side CH can just change sides. However it doesn't always work for all and for some people the effect of the block can last a variable amount of time, sometimes not long enough to cover the cycle (something to watch for).

Have you any CH abortives in case the block isn't working or before you can get one?

Tell us more about your CHs and we may be able to give some suggestions. Ask any questions you have.
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Magicman516
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Re: Just got on a new treatment that seems to work
Reply #2 - Aug 1st, 2018 at 7:21pm
 
I started getting them about 8 years ago. Took 3 years for a proper diagnosis. For me the cycle starts with some migraines. However once I start getting them right after I wake up in the morning I know I'm in cycle. That's about 4 days into the migraines, and usually around the Summer and Winter Solstice. At the peak of the cycle I'm getting a headache every 2 hours so about a dozen a day. At peak, kip level on each one is 8-10. Worst ones are 1:00pm and the ones at night. For me it's like a bell curve on my cycle. Where right in the middle I'm going insane. Kind of like each headache. 20 minutes of hell. But about 10 minutes of extreme agony. Once the pain starts to fade I can function.

Craziest ones are the ones that wake me up at the peak of pain. I've woke up twice not knowing who I was or why I was in pain. I did know I just had to sit up and deep breath to keep calm.

People around me are amazed at how they just go away completely after 20 minutes. They see me in agony and then I'm perfectly fine. They just don't comprehend it.

Problem for me is I'm on Beta Blockers since I had a heart attack so verapamil isn't an option right now. Last year I had 5 bypasses done. I'm only 49 and only weigh 179lbs that's with the prednisone weight I put on so I need to lose 10 lbs. I'm in good shape and heart issues don't run in my family but I had an extremely stressful time about 10 years ago and the doctors think that contributed, plus probably the stress from CH didn't help.

I just had the injections last week and the headaches are coming back and I'm flying across the country in the morning for 5 days. So no time to see the doctor before I fly out. I'm bringing my prednisone with me but I don't want to take it. However I do want to enjoy my vacation.

This cycle seems to be longer and I'm wondering if it's from the prednisone. Started around June 15th and got on prednisone because my doc was out of town. Finished the first 15 day cycle and took 2 weeks off. Headaches came back and tried to see the doc but he was out of town again. Went on another prednisone cycle and got off when I got the injection. I want to brave it out and would if I didn't have this family reunion to go to.

Maybe it's not longer. I've had an 8 week cycle before without prednisone so I just hit about 6-7 weeks this cycle. Might make it easier to tough it out realizing the cycle is almost over.

On a positive note it's been over a year and a half without a headache above a 5.  That's a blessing that no one but the people on this forum can appreciate.  That's due to my prednisone and nerve block routine.

Sorry for the long winded message.
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« Last Edit: Aug 1st, 2018 at 7:45pm by Magicman516 »  
 
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