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  1. Yesterday
  2. I used my thigh, so far so good. Day 4 attack free.
  3. Last week
  4. I did take a few rounds of Emgality, first month went ok and seemed to settle things down for me each month after it progressively got worse. I think I lasted 3 or 4 months, I can not remember. I know it was 3 shots that I had given myself in the stomach once a month all at the same time. They were delivered to my house and needed to be kept in the fridge until I used them. One thing I can remember is that if you do not let them get to room temp before using them it hurts like hell. Give it a try and I hope it works out for you. We are all so different in what does and does not help. Just gotta try it tweak it and figure out how it best works for you.
  5. Here's an overview that might be helpful: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  6. Please join Clusterbusters at our 2nd U.K./European Conference! The cluster community will gather in person in Glasgow, Scotland for a weekend with speakers including neurologists, patients, and caregivers. The agenda will include safe rooms, treatment workshops, demonstrations, and the chance to share and learn from others' experiences living with cluster headache. We hope to see you there! Register today! https://cbglasgow2024.planningpod.com/
  7. Hi CH father Thanks for that. I have read all the info available from the website, their studies and everything else I can. I have not tried any of those, I'm still relatively new to understanding what the heck is going on with this all. Only officially diagnosed in November and only now, since December in a cycle that only gives me 2-5 day remissions that only come when I travel to my house in south FL. My go to for relief has been Advil cold and sinus and Motrin Duo, that does seem to help within 20 minutes or so. Right now on day two almost attack free after hitting myself with the Emgilty Saturday. (I had one mild one Saturday night ) I did try sumatrin (SP) a month or so ago but had a bad reaction. Edit, I typed that yesterday, thought I hit submit, guess not, now it's Tuesday and in day 3 pain free. Fingers crossed it's just the start of a good run.
  8. Thanks alot friend. Means alot to me. Seriously does. Wishing you a lovely day.
  9. Well there's no denying that you went through some terrible experiences and my heart hurts for you for that. While you can't change your past, you can create your future. With everything you've endured, I would imagine that you are incredibly strong (you are a cluster head afterall)! Keep your chin up and continue putting one foot in front of the other. Our past plays a huge role in who we are today. If you were stripped of your past you wouldent be YOU (not saying that you should have went through what you did) just that your stronger then most will ever understand because of it. Keep being STRONG... You got this!
  10. I go off into the higher realms of consciousness during cycles. It's pretty easy to do when you are exhausted from no sleep and been tripping on stuff for weeks. During the worst attack in my life I heard dancing queen playing in my head note for note like it was really playing. That one was weird!
  11. Hi there Chris. Thank you so much for taking the time to inspire me in ways to handle my situation. I truly appreciate it very much. I assume this is a safe place to spill my guts without being judged? Here we go: Just like you, my battle started when I was 16. But let's rewind a tad. Between the ages of 10 till I was 14, I had been sexually and violently abused by 3 people. Continously during this patch off my life, holidays, birthdays or any special occasions were taken away from me cos this when it was at its worse. These people are not my immediate family. Anyways, I hid this from everyone up till today as I'm sitting at 45 years old. When I was 19 I couldn't study cos we couldn't afford it. My dad was ill and my mom worked 2 jobs. So I went straight into the job life so to speak, making whatever money I could so we could put food on the table. Age 22 I managed to save up enough to study and achieve a diploma. Things started looking good for change. 2001. New years eve, I was on my way to work. Didn't have ea car as yet so I took a taxi. The taxi back wheel got loose at 140kmph and the entire vehicle rolled over about 3 or 4 times before landing on its roof. I managed to kick out the back glass and climbed out. Helped who ever I could. Cellphones where flung out of the taxi however I managed to find mine to call for help. But just felt so dizzy that I fell onto the road. I could hear something screaching only to find a truck tyre inches from my head. The drive jumped out and rush to me. My shirt was soaked with blood etc. So he just ripped it open to check for injuries. I still can believe that I never had a scratch. It was somebody else's blood. 2011. My 1st hip replacement. 2013. My second hip replacement while my wife was in the same hospital sorting out our second miscarriage. And I know what going through a miscarriage is being a male in a marriage. I have seen also what it does to the female. It's torturous. There aren't words actually and I tried to support from I was. We currently do not have kids and we don't want any. We just have a dog which we latch on to. And I can see that I (as much as I love my dog) am second to him. Which kinda sucks in a way. Moving on, I had been medically boarded from work due to the headaches and hip replacements even though I loved my job. They put it down to me in a very sly way using the fact that they refused to let me carry my O2 to work. I fought them since they 1st brought it up in 2014. But they got me out on 31.03.2021. So yeah my salary took a plunge and I'm left at home staring at the walls. I turned my hobby into a small business which is electronic repairs, however I stopped for a while now since my brother passed last year. Still dealing with my loss. I always wished it was me and still do. To be honest, I'm not sure if others feel this way, but I am not afraid of dying. Actually alot of people are not afraid either. I guess they fear of how they will die. I so welcome it. In fact I had 2 failed attempts at suicide. Yes I'm seeing a psychologist and psychiatrist which I also put on hold since last year. ... And now the CH season starts. I am sorry for the long read and if I said or mentioned anything that is not allowed on here. I am glad I did find this group because I did learn alot, especially the D3 Regamin and O2 treatment. Even though the damaged to my self has already been done. I may require bilateral knee replacements soon as well as the 15 year intervention regarding my hips. I am sure others have been through worse in their own way and path of life and this is not to undermind what you all are going through as well. Just know that I appreciate you all for the advice and direction in managing this condition atleast, even though I have no control over my past. I guess all that's left to say is Thank you all from the bottom of my heart and pain free wishes always.
  12. The recommendation for CH is three doses, starting when a cycle begins. Two is for migraine. This is from the Lilly/Emgality website (https://uspl.lilly.com/emgality/emgality.html#pi) Episodic cluster headache recommended dosage: 300 mg (administered as three consecutive injections of 100 mg each) at the onset of the cluster period, and then monthly until the end of the cluster period. You still could get some relief, so it's worth trying, but it might not be a real test. Don't recall from your previous posts what you're doing for your CH. D3? Verapamil? Tried busting? Oxygen? Seems like prednisone would pretty surely get you some days of relief.
  13. Join Clusterbusters board and staff TOMORROW, March 24 at 12pm ET for an informal chat in honor of #ClusterHeadacheAwarenessDay. Register for this free event: https://conta.cc/42RVIjh
  14. I've been desperate for some remission that lasts longer than 2 or 3 days. Dr wrote the script but at $4K for the initial dose plus 1 maintenance dose my ins company wanted to review it. A week later, a lonnngggg painful week, I'm approved and with a manufactures coupon (that you can download at https://emgality.lilly.com ) It'll be $-0- cost to me. I don't want to get my hopes up but wow the thought of getting a meaningful/ longer than 3 day remission is pretty exciting. Anyone have any advise/ experience on using this? I'll be reading of course but it's always nice to hear first hand.
  15. Generally, oxygen can be obtained in most major travel destinations. Check with your O2 provider because sometimes they can make arrangements. I guess the most common rental is a pretty unhelpful low-flow concentrator. This site -- https://travelwithoxygen.com/travel-oxygen-portugal/ -- seems potentially helpful; and this one https://www.oxygenworldwide.com/en/where/countries/
  16. Hi all - I’m debating an upcoming trip to Lisbon, Portugal with family because I’m in cycle. You can’t fly with oxygen tanks so I can’t bring one with me. Anyone have any insight into how I can get one to have at my hotel room? I already emailed the hotel, waiting to hear back. I’ll bring my regulator and cluster mask. My cycle has been very very manageable (thank you RC seeds!!) and I pretty much just need Advil and ginger capsules to treat any CH activity I feel, however, I do have to hit to oxygen from time to time. And flying and time zone changes can really mess with CH! Appreciate any tips and advice!
  17. I know how easy it is to be so mad at this condition and the number it does to us. I find that for me, practicing being as kind and compassionate to myself and then to my loved ones really does help. Staying as calm and peaceful as I can (both while having an attack and during pain free time) helps to lessen pain and attacks overall. I know it is SO MUCH easier said than done. But just try and practice compassion in every way you can, starting toward yourself and it helps. Sometimes what I do to facilitate this is I imagine myself as a 16 year old kid getting these attacks for the first time. I think about how scared he was and how alone he felt and how much pain he was in. I feel so, so sad for him and just want to hug him and tell him everything will be ok and comfort him the best I can. Then I take all of those feelings I’m experiencing toward the young version of me and extend them toward present day version of me. Compassion and care and empathy toward myself. For me it helps to calm me down and lessen overall pain and suffering.
  18. Also ... 20 Facts brochure 8-24-13.pdf Living with CH - 8.5x11 - 9-15-14[2].pdf
  19. @Dallas Denny Hi Dallas, Thanks alot buddy. Will check it out.
  20. @Snowflake There is an excellent book that was written and published several years ago by a good friend who is also a clusterhead!! Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man https://a.co/d/3kZwmXJ Dallas Denny
  21. Wouldn't it be nice if there was a simple book of what this condition does to a person for the sake of understanding to everyone else. I know you probably have the beach boys playing in your head right now and I'm not talking about the pain of our condition. 90% of people will never go into this site to understand cos let's face it, they don't care enough to do so. I'm referring to the state of mind in all it's "splender". Anyone else has no filter during CH seasons? I feel like Eminem on steroids and I'm pissing off everyone around me. Obviously I don't care either right now however, people are noticing change in my responses and actions. So I shut up most of the time or try to avoid contact with anyone. Even my spouse. She does know the "drill" however the questions. The simplist of questions can start a fire in my eyes and what comes out the mouth, are stuff that neither of us expects. As for being out on the roads..!! It's like I have a license to be an ass. My D3 update: Sitting at 259. Hits max 3 per day @ 5 to 7 mins aborted with O2. No nocturnal attacks.
  22. Earlier
  23. Okay Funtimes. In that case, I have yet to "bust a cycle." I have had CHs since june 2022, so I would be in the chronic category. I haven't had a "cluster" period that ended.
  24. Hello, if you're still there! I'm fairly surprised to hear that. I also had a stubborn eye infection that relapsed few times back at 7 months before experiencing these headaches. I'm now more inclined to think that the virus may be connected to or triggering a mechanism in the hypothalamic region. Interestingly, I've been prescribed a drug that I've used for 11 months as an immune-modulator cyclosporine which is also extracted from fungi? maybe they all make sense who knows. FYI docs told me it's an epidemic adenovirus, nasty one.
  25. Join Clusterbusters board and staff on March 24 at 12pm ET for an informal chat in honor of #ClusterHeadacheAwarenessDay. (Yes, this is the Sunday after CH Day!) Register for this free event: https://conta.cc/42RVIjh
  26. I get those. They come and go. Doing decent right now but wow, they suck!
  27. .....i think its the breathing part with or w/o oxygen. while not a panic attack in the true sense my initial reaction to a hit, yrs ago, was panic and thrashing and swearing and working myself into a frenzy. it took a while but i finally figured this over the top reaction was getting me nowhere. all this to say i adopted a verrrry slow deep breathing technique when aborting with O2 that had a remarkably calming, almost meditative effect and actually used an lpm similar to yours. aborts became quicker and calmer! your breathe and hold is another favorite....try this slow/deep....maybe even w/o the O2.
  28. This has been my go to since my first cluster 10 years ago. I start with a cold pack or cold wet wash cloth to my face or head and then usually end up in a hot shower. It works more than half the time although I have had nights where I have had 3+ showers before morning and have even fallen asleep in the tub as the pain receeded. It's usually my last resort as actually getting myself in the shower after the pain starts isn't easy.
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