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Everything posted by MattBE

  1. Hi Squizzlet, I also have both CH and migraine but luckily for me, never at the same time. It sounds horrifing. Is it possible it has something to do with your blood pressure? Are you eating well? Could it have been an extremy bad migrain attack but no CH? Do you feel both the CH pain and the migrain pain at the same time or does the CH pain consume all? Stay strong
  2. Welcome Dylan, sorry that you have to be here but we are here for you. In my case, it's less difficult than in other countries to find people who understand our pain and emotional/social suffering. There is a clusterhead with untreatable CH in my county, he has appeared quite a lot on the news and this helps all the clusterheads in my county, we can just refer, sadly, to this guy and most people know him. Even tough, most people just see it as severe migrains and will never understand until they feel it. I turn mostly to my girl when I'm at my worst. I have started to open up to my family lately and showing them what living with CH is really like. They try really hard to understand. If you can treat it, with O2, D3, triptans etc there's still "living" besides surviving the clusters. I was diagnosed with CH when I was 19, after having it for 2 years. Failed school etc. 6 years later I went back and now I just finished my university college and started to work as a paralegal. I have a very understanding employer who also gets benefits from the state for hiring me (the state pays part of my social burden and extras when I can't work because of the clusters). It isn't easy talking to people , let alone an employer. But there are people who understand. Hiding the pain and side effects from meds is nearly impossible, talking about it to people who really care for you is the first step. People who don't understand after you show them what this pain does, who don't want to, are not worth your time. I just let them talk don't listen. (picture monkey with instrument in homer simpsons head ) just knot and don't let it get to you. Hope this helps a bit, if not, we find some comfort in each other, here in this forum
  3. To reply to Spiny; I also take verapamil and have low blood pressure but I take effortil (Etilefrine) with every dose, keeping my pressure to normal, otherwise I could not take it. If you can, use ginger, celery, carrots and cucumber to make a smoothy or drink alot of ginger ale. I use the combo of Red Bull, caffeine shots and ginger if I maxed out the triptans for both chronic cluster and migrains. Also thanks @spiny for the tips on the O2 usage. It's very helpful ! Good luck faithd, I don't know anyone who understands or has this pain either, I feel your pain. This forum is the only place I can turn to. If you have more questions or feel alone in your struggle, we are here for you.
  4. Thank you for sharing ! And welcome to Clusterbusters, sad to see you here but welcome
  5. Hi Danny, can you tell us anything about the experiences these people have with this treatment ? Matt
  6. thanks for the replies, sorry took so long to awnser. There's a big media case of CH in Belgium . His name is Peter Ketelslegers, you can find a lot of his case online. I've included a link about him moving to a warmer climate, normaly you can auto-translate it. It's worth it a tought. https://www.hln.be/regio/turnhout/man-met-clusterhoofdpijn-kan-eindelijk-naar-warmer-klimaat~a94c7cbc/ Matt
  7. https://www.ncbi.nlm.nih.gov/pubmed/29124668 https://www.ncbi.nlm.nih.gov/pubmed/28389966https://www.ncbi.nlm.nih.gov/pubmed/28389966 Fremanezumab (INN) is a humanized monoclonal antibody directed against calcitonin-related polypeptides alpha and beta.[1] It is being developed for the prevention of migraine (and cluster headache) by Teva. It is in Phase III clinical trials as of July 2017.[2][3][4] Results of two pivotal phase 3 studies were presented in 2017.[5] Teva hopes for US FDA approval in 2018.[5] *Wikipedia* http://www.tevapharm.com/research_development/rd_focus/pipeline/https://www.ncbi.nlm.nih.gov/pubmed/28644160 I think it's the same ? just posted something similar , was looking for more information
  8. Smoked weed daily from my 17-23 yrs still smoke during bad clusters . Have CH from 19-27 and onwards doesn't really help with the attacks. Numbs / reliefs the shadow pains a bit
  9. Hi all , found this while browsing all of the big pharma's website's whilest looking for .. hope ... http://www.tevapharm.com/research_development/rd_focus/pipeline/ https://www.ncbi.nlm.nih.gov/pubmed/28644160 any idea's ? Any other update on something new? Matt
  10. Hi, I'm new to the forum. 6 years ago doctors said to me I have chronic CH. I've been fighting the beast ever since. I'm wondering, because weather and seasons do affect our hyppocampus and thus our CH, what the best location would be for all of us to live. I'm ready to move, are you ?
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