Jump to content

spiny

Moderators
  • Posts

    4,118
  • Joined

  • Last visited

  • Days Won

    197

spiny last won the day on June 23

spiny had the most liked content!

About spiny

Profile Information

  • Gender
    Not Telling

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

spiny's Achievements

Experienced

Experienced (11/14)

  • Conversation Starter Rare
  • Dedicated Rare
  • Reacting Well Rare
  • First Post Rare
  • Collaborator Rare

Recent Badges

1.7k

Reputation

  1. Not trying to be flippant all, but it is funny to see the doctors react to a hit right in front of them. Evidently Shaun's doc had seen one before! I know of some You Tube videos that would help them!
  2. Funny, Jon talks about having a hit in the office to show them the pain that we endure. I would love to have one in front of my Neuro. He is kind and good, but has no idea. Most of our meds are actually hand-me-downs from migraine treatment. Some work, at a different dosage, others work not at all. We are too large of a patient population to be called an Orphan Disease and get special treatment. We don't fit in any box and we get almost NO research into what might help us. So, we ride on the coattails of Migraine. Heck, even our use of MM is migrating to the Migraine community and LSD testing is sort of being taken over by other illnesses since it is in testing now for PTSD, Clusters, and Migraine. Migraine is the one that catches the public eye. I had to take my husband for my second Neuro visit to kill the 'migraine' mission the doc was convinced was the right path. My descriptions mattered not to him. Female = Migraine. After my husband told him he was sick of loosing his wife at 8pm every night, he perked up and listened to me. Yes, they want to peg Migraine and I think it is because it is easier to successfully treat than CH. Most are in over their heads sadly.
  3. Yes, do that!!! Perhaps it will open his ears to what you are saying. Good grief. O2: Tell us how you were instructed to use it please. That makes all the difference in the world. What flow rate, mask type, time, etc. It ALL matters. Do you utilize caffeine for your hits? Energy drinks or coffee? He may be a pain specialist, but that is NOT a Neuro and he likely has no idea regarding Clusters. They are not his forte. Have you read about the D3 Regimen? Cheap, easy, no doc, and good for you.
  4. mit12, Have you tried upping your K2? That might bring the calcium down some so that you could up the D3. MIght be worth a shot for 3-6 months and see where you are for all of them. Jimmy, I an not aware of any shortages. But that does not mean that there is not one!
  5. Hey TTF, This is the first year that I have avoided the sun at all costs. And it has put me in the position that you are now. I have never had a cycle in summer. but now here I am. Glare...... One hit the first night, then made 4 for the second night. O2 is working great, but I am tired of it already, so I definitely feel the pain and all that mess. My D3 is now upped too! This cycle has been going for over a week now. Soon, I will be P.F. I hope and you too!!!! Hang in there and we will get better in short order!!
  6. spiny

    Crickets

    Currently. 1:28pm, there are 75 users online. One member - ME!! Those are the Bots that troll for information and then roll off with it. Also why we try to keep some topics on the Members Only boards. We do get some times when the board goes pretty quiet for a few weeks then gets really busy again. I take the calm as people are doing better and enjoying the day. Happy Friday Bosco!!
  7. Yes, you can survive!! We all wish that no one had gone through this disease and wish that it did not exist. But, in our wishing there is also the wish to meet others who actually know our pain and want to know how we get through our days and nights. That alone can help us get through the tough times a bit easier. We have each other to learn from and lean on if needed. Like your O2, we are friends, just not as close. I truly understand your regret. Been there and done that, you know? But it did not end my world. There is HOPE and there is HELP!! You have taken a step and reached out to a great group of people who have been in the same boat and have held the same paddle that you are using now. We hang together to help each other. Get some relief from the suggestions you have been given. Private message anyone and likely you will get a personal response. Yes, you are half a world away, but we Clusterheads keep weird hours!! Hang in there! We have a lot of suggestions for killing a hit and silly things that we have done and found help in doing them. Like a face plant in snow, a screaming hot shower followed by ice cold finish. Yea, we are a creative bunch here.
  8. Hi Moona. Ouch. It hurts to read this. I was on Verap too and my dentist talked me out of taking it one summer. It never worked again at the levels my body could handle, so I feel your misery to some degree. It is also how I arrived at this site some years ago. Not doing a taper of the Pred was irresponsible, I think. Backing up and starting over due to his/her mistake is baffling to me. Insurance messing with you on refill dates is way too common these days too!! Not like it was Oxy, right? The Pred will normally stop the pain until it is tapered down to your personal cutoff point. Meaning that we are all different. For me, below 20mg/day and they return. Others have different amounts that allow the CH to blast back in. The Pred is supposed to be used as a 'bridge' to get you out of pain while the Verap builds up in your system. It sounds like it was prescribed correctly the second go around, but it may be that the damage was done in the relief department. Most take over 320/day for relief, with some going up to over 900mg/day. Verap is not great for your body and many doc's won't give the higher dose that many require. And at 240 or 320/day is not high enough to work for some. It lowers your blood pressure and that needs to be monitored. So, that is a limiting factor on how much you can take too. You have O2 and abort with that now, right? It is still your best friend. Add in some caffeine and you can abort almost all of your hits. Of course that is not the final result any of us want, we want to be pain free. Next up in the ease of application is the D3 Regimen. I will attach the one that I take. It was the first iteration of the protocol. Here is the link: https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 These vitamins have an amazing track record for many of us. It will slow the ramp up of pain and lower the max pain level reached too. That alone is worth swallowing a few pills a day. Ok, more than a few, but they are vitamins and good for you. Many Chers have low D3 levels. It should be 80 - 100mg/ml when you get blood work. It is suggested to get your D levels checked before or soon after starting the D3 Regimen. I see that CHF has attached the later version of the Regimen. It has more stuff in it and many do go that route. I think that you will feel better and more optimistic if you taper off the meds - Pred and Verap - and run with the D3, O2, some caffeine, and perhaps toss in some ginger for shadows if needed. It really works for many. If it does not put you in a pain free position, there are other things to add that won't mess with your body like what you are currently taking. You can start it right away too. No doctor needed. You can even order the D3 test yourself in the states. All the best and hang in there. You are among friends here and we have been in your shoes too. Kinda nice for a Clusterhead.
  9. I had this. It was bent to the left at a ninety degree angle. They operated. That side would bleed like a prize fighters at the least provocation after they fixed it. Like if I was stick welding in class, it would just start to run like the worst cold in the world, but it was blood. I had to wear a mask while over the heat. There were a couple of other things that would get that faucet running too. It was a mess for years, but my regular sinus infections were a thing of the past with the fix. That is why I agreed to it in the first place and was hoping that those infections were the cause of my CH of course. Of course the surgeon said 'Yes, this could help that too!' It did help with the clogging on that side to some extent. It did NOTHING for my CH. They wanted me to go back in for another 'ramrod' job to clear out all the blood that is trapped from the bleeds several years later and I said 'No!' in no uncertain terms. It was a most unpleasant surgery and I was not going through it again so that those sinuses were no longer opaque from the blood in them.
  10. Most of our Serotonin is made in the intestines. So, yes, there is that part of the puzzle. Busting aims to fill up the serotonin receptors in our brains. Connection? I agree to some degree. No proof, but it has always made me wonder.
  11. An old one, but Testosterone injections have actually helped some CHers. Also the top dog for ED I think. That is actually a guess. But getting the T and Free T up to 'standard' levels was a big help for some a while back. It is an injection, so trip to the doc or do it yourself deal. Not bad to get the shot from what I have been told, but a nuisance to go to the docs for it every two weeks or once a month. But, hey ,if it helps, GO FOR IT!!! ATB!!!!
  12. Should work fine Jeebs. It is my 'poof you're dead' drink for shadows or threats Cheap too. Staying pain free is not a 'one size fits all'. The D3 is a huge help and keeps me P.F. from a cycle. That does not mean that I don't get hit! Life just flat gets in the way someday's and 'more' is needed.
  13. They are 200mg of caffeine. I likely have only mentioned it a few times. Most sheer away from downing the powder. But, like a BC powder, it does hit faster. I still do V8 Energy or iced coffee a lot too. But in a hurry and behind the 8 ball, this method works very quickly for me. Keeping some pills with me at all times is a plus too. Tiny and I can take them both ways.
  14. Pant-less is fine for critters and Pooh, but not Buzz!!! CHF, I have found that the caffeine pill seems to work better - make me feel that it is working better/faster, if I down something cold to swallow it. Likely all in my head, no pun intended, but it makes me happier and I think that affects my head in a positive way. Just a bit to pass on if/when you want to. The absolute fastest is to dump in the powder sans capsule and chase it with cold liquid. It's bitter, so I am chugging!!
  15. Jeebs, your guy lost his pants!!!!
×
×
  • Create New...