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Showing content with the highest reputation on 05/28/2017 in Posts

  1. Good afternoon! I've been a cluster headache patient for 8 years and as I'm sure you all know it's detrimental to any goals or dreams you might want to some days fulfill. I'm just throwing a beacon out there to any fellow Wisconsinites to please send me a message!
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  2. Hey Jacob, Small suggestion. You are on the Extended Relief form of Verap it seems based on the twice a day dosing. It has been found that CHers do better with the old short acting version for some reason. You might try that. Be aware that Verap lowers blood pressure. This can be a limiting factor for some patients.with normally low blood pressure. Just something to keep in mind. I could not go higher than 240/day. I took 80mg in the am, 80 around 8pm and the last 80 during the night as my hits are primarily nocturnal and I was going to be up. Worked better for me that way. Even at that low level, my resting bp after the 8pm dose was 80/60.
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  3. Hi Jacob and welcome to the community! We have several members here from Illinois including our illustrious leader who is from the Chicago area! You should make plans to attend our annual clusterbusters conference in mid September which is being held in Chi Town this year if you possibly can......we had over 180 attendees last year in Austin and I hear we're on pace to surpass that number this year!! Nothing like meeting a bunch of folks that know first hand what you're dealing with!! Dallas Denny
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  4. There are people with CH who have obtained SSDI disability. For most, it was a multi-appeal, multi-year process, but I gather that some got it pretty quickly. No kind of headache is specifically covered by the SSDI guidelines. The Budget Director of the Trump administration said just within the last few days that he'd like to see more people thrown off disability (the ones that "don't deserve it," of course). You can get the basics here: https://www.ssa.gov/disabilityssi/ Lawyers who handle disability cases can't charge you, except for basic things like copying, unless you win your case. In previous discussions of this here, some people have said handling your case yourself is the only way to go, and others have said they were glad they had a lawyer. I remember one or two saying they were glad they had an experienced local lawyer who knew the judges who rule on these cases. There are many big law firms that do mostly disability cases. Since it's free to ask, you might consider calling some to see what they advise you. I have figured that because of the payment situation, they might not want to take a case they don't feel confident of winning.
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  5. Hi Junco, I imagine it wouldn't be a bad idea to research a bit on the topic of schizo-affective and psychedelics, as last I checked (which was years back), even those who recognize the potentially therapeutic properties of psychedelics, recommend against them for anyone with a family history of schizophrenia (if that is related to schizo-affective..?). Also, CHfather isn't known for giving people a hard time, just the opposite in fact. He's well known for being non-judgmental, and for volunteering his time to help countless headbangers find their way to some relief, so when interpreting his words, I think that can be a good angle to come at them from.
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