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ClusterBusters

JeffnTx

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JeffnTx last won the day on June 2 2016

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About JeffnTx

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    Fort Worth, TX
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    Running, Cooking, Gail, My son

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  1. JeffnTx

    Weaning off Verapamil

    My GP cut mine in half from 480 day and that set off an episode of HA. After hat I was weened of over a month or two and had no Cluster for over two years. I am 60 now though and my Neurologist tells me the episodes I have tend to stop between age 60-70.
  2. I took 480 mg daily for almost 20 years. It clearly reduced the frequency of Clusters and severity of pain. Prior I had typically 2 clusters/year. On the drug only every year or two. I started having edema though as a side effect. My GP cut the dose in half witch triggered an episode, whereas I had no clusters for 2.5 years prior. After that I was slowly weaned off the drug. Had no episodes for 2 years. My neurologist indicates that the episodes can become less frequent with age on their own. I am sure though that the drug decreased my # of episodes.
  3. I saw this device on the news today. People should be glad there is a new effective treatment rather than demonizing the company that produces and markets it? Someone spent millions to test, develop and get the device FDA approved. If they can't make a profit, guess what? No new development. Probably one reason that there are so few effective treatments for CH as there are not many of us as compared to migraine. There's not as much profit potential. I would see the real villains as the insurance companies who will refuse to pay for it just because they can. Have you ever tried to get your insurance to pay for daily imitrex? I think my last episode, I paid for O2 out of pocket because insurance would not pay. That was several $100. The O2 works fine, but maybe the new device is more convenient and portable for those it works for.
  4. JeffnTx

    Clusters and migraines?

    Mine started when I was about 12. Through my 20's they lasted about 45 min typically.I had no real treatment then. I've taken Verapamil for the past 18 years, which seems to let me skip some clusters and when I do get them they are not as painful as they where back then. They seem to last much longer now. Sometimes the intense pain for 3-4 hours. My dad had what where dx'd as Cluster migraines. One sided headaches with definite clusters, but his could last for days. Imitrex worked well for him
  5. JeffnTx

    just ranting

    I'm in the middle of a cluster now. I tried to get "welding" O2 and had no luck. They all told me I had to go through a medical supply company and have a Dr px. Jumped through those hoops, which took time and headaches, but the O2 helps immensely. I told the doc that I tried to get O2 under the welding need. He replied that for people with certain heart conditions pure O2 can be lethal. So one reason thay do require a px
  6. JeffnTx

    Verapamil- how taken?

    240mg ER Bid for many years. It greatly decreased the number of episodes and the pain Severity. I had no episode for 2.5 years then my GP reduced the verapamil in half because I get Edema from it. My CH returned within a week. Back on the original dose now, but still in the middle of a period of attaches.
  7. JeffnTx

    New memeber headache sufferer

    The first response is good. Go see a headache specialist not a general md or neurologist. Your pains sounds like Cluster HA, but they don't usually last days. Mine last 1-2 hours typically. MY dad though has what are diagnosed as Cluster Migraines. Same symptoms, but his came in clusters and would last for days. but like other disorders there can be variations I suppose.
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