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Everything posted by CHsuckedmylifeway

  1. CHsuckedmylifeway

    New and worried

    Hello everyone I am newly diagnosed with cluster headaches I have had the same headaches for going on 7-8 years now recently switched doctors as I changed insurances.. previously I had been told my headaches were migraines and being the naive 22 year old I was I thought obviously my GP new best. Previously my cycles were predictable one in early fall typically lasted 2-3 months and another in the spring.. lately my current cycle started around November or October of last year and the only relief I have had was while on steroids... I'm currently on 480 mg of verapamil. Unfortunately due to depression medication interactions I cannot use triptans.. my new pcp thankfully has experienced a patient with CH before so she recognized it when I presented. Neurologist recently did a nerve block on me with mild relief of the pain but not the frequency of attacks. My major concern is how long the cycle has lasted as well as my average pain level has progressed from a 4-5 kip to most often an 7-8 with spikes as high as a 9 9.5 just barely below the level where I would do anything to stop it
  2. CHsuckedmylifeway

    New and worried

    Thanks batch I appreciate all the info will be reading through it as soon as I get home. My neuro ordered an MRI Monday when I saw him to rule other other causes and reviewed it with me today as well as doing the nerve block. I will admit I left with a few questions I wasn't sure how to ask him but he noticed an anomaly in my brain that my attacks occur on. He ordered a follow up MRI in 3 months to verify that it is stable and has not grown. He said that if stable it is most likely an anomaly in the venous structure of my brain which has been shown to have come correlation to CH. anyone with similar result ? Also he stated if the blocks do not work not to be discouraged because treatment has come a long way recently and there is more we can try. I just looked at the recommended doctors list he is unfortunately not on it but I will say from my experience with him so far I would definitely recommend him to others very understanding of the condition as well as seems to be very knowledgeable about CH treatment and research that is currently going on
  3. CHsuckedmylifeway

    New and worried

    Thank you guys for all of the information I am very hopeful that me and my care team can get these under control. First positive outlook I have had in a long time was meeting with my neurologist once he saw CH in my chart he immediately went to business with what we were going to do to try and manage mentioned several studies that have shown promise in treating. I can honestly say I'm glad I ended up with him because he seems very knowledgeable and on top of things he has even contacted me yesterday and today to see how the attacks have been since nerve block and since I have seen some improvement he squeezed me into his schedule to do two more of them 72 hours apart. I won't lie since this last cycle started I have lost my job due to the debilitating pain I am in daily am on the verge of losing my significant other i honestly had lost all hope and was ready to give up. I'm glad a family member found this forum and recommended it to me I'm starting to feel like there is hope that I may one day be pain free and get my life back. .... Update the beast is back and angrier than ever after two days relatively mild with both attacks and pain last night he reminded me that he will not go easily between the hours of 12-6 am I had a total of 4 occurrences of him showing his ugly face pain levels ranged from a 6-8.5 at the worst. Unfortunately o2 is not scheduled to be delivered until this afternoon. Thankfully my neuro already had me on schedule for this morning to do another nerve block so hopefully this one provides me more lasting relief
  4. CHsuckedmylifeway

    New and worried

    Thank you Dallas and CHFather for all of the information I will definitely be looking at those got the prescription for the oxygen taken care of today should have it in the next day or two. One of my biggest worries and hopefully someone knows the answer is it normal for a cycle to go from fairly regular cycles to an extended cycle as I am having now. I have seen previously that occasionally you can go from episodic to chronic but that it is fairly rare