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Everything posted by spiny

  1. I think that there are too few of us to have a regular support meeting like AA. However, many have formed groups who live in the same general area and meet a few times a year to visit and exchange war stories. The big group is the Annual Clusterbuster Conference. In 2020 it will be held in Chicago in September. It is truly an amazing experience to meet a big group of people who have CH!!! Well worth the money and trip. You will learn a lot and be surrounded by people who 'get it'. ATB!
  2. Don't dread it - prepare for it. Beat it to the punch! Being prepared has been the biggest help for me in terms of 'dread'.
  3. Hey Karen. We tend to turn our back on pharma when it does not work - repeatedly. If it were working, there would be little use for this site to be here. He may find relief with pharma if he is on Verapamil at high doses. It carries risk too, but is the mainline treatment and offers the best relief to the most people taking pharma. I understand your dis-comfort with alternatives. Read up and ask any questions on the closed boards. We try to keep that in the members only section due to the bots running around the net. He needs to try an energy drink at the first sign -when his teeth
  4. I found our sister site first. Clusterheadaches.com Then I came here from there. That is the site Denny is referring to in his post. I was doing the massive search for any info on CH for hours every night. Many here have done that one. CHF, you may be right. It would be higher for me as I come here and I enter it on DDG on occasion. So, it makes sense. The FB group is a good one, but there is 'drama' and some who know little to nothing handing out info that is not correct in some cases.They have tried to make it work and expended a lot of effort doing so! But, people are people and
  5. I use Duck Duck Go. We come up on page one. So, the search engine is the issue, as Brain stated. Ads buy location! As Brain stated above.
  6. Greetings Spike! Light has brought you to the right place! We are more than happy to help you try to get this under control. Give us a bit of back ground on your Ch. What are you taking now? That sort of stuff is a huge help to our members who will reach out to help you. ATB! And thanks Light!
  7. Wonderful Kat!!! Happy Recovery!
  8. Hi Lady Graham! I know what you are talking about. Mine began at 22 as chronic. Low level pain and lasted 20 minutes. I took Enderal (sp) and another drug for them. Doc's could not make a diagnosis. I would get hit about 8 times a day when in high cycle. Then a reprieve! 10 years pain free. During that time, the beast changed and grew. When it returned, it was M.A.D. I then began with the cycles I described above. Now I am over 70 and still have the lovely things. Glare..... Please.look into the D3 Regimen. It is over the counter vitamins that you take daily. It is best to get a bloo
  9. Hey Brain, I just deleted it rather than move the entire thread.
  10. In the way back machine, when I had no abortives, my pattern was: 8pm the first hit arrives. It lasts 2.25 hours - untreated. 10:30pm the next hit arrives. Repeat of 2.25 hours of misery. 15 minutes of pain free between the two 1am the third hit arrives. Repeat the same pattern for 2.25 hours 3:30 the fourth hit arrives and does the same as the previous three of the night 6 to 8am Sleep - in a recliner. So, that was my nightly schedule for 6 months if nothing else got into the mix. Then I was pain free till the next Equinox. This went on for years before I got h
  11. The Vitamin D3 Regimen is composed of vitamins! Nothing to worry about with a drug test at work! Easy and good for you. I strongly suggest that you consider getting started on that right away. Yes, it is best to have blood work prior to see where your vitamin D is at the moment. Then you see how much loading you might want to try. But it is to your advantage to begin taking the vitamins now and get the blood work in a week or two if that is how long you must wait. Please give it consideration. It will not conflict with your search for a new Neuro either. If triptans give you heart
  12. From my reading, yes. The guys have discussed it on occasion. Personally, just getting started I get slammed if it is night time. Day time - nope.
  13. Welcome Marcelo! Very happy that you found us. There is a lot of info to read and absorb. Ask all the questions you want. There is a banner at the top of each section 'New Users - read here first' That will give a great start. What meds are you taking and do you have O2 with a non-rebreather mask? High flow? That is the main game changer. And check up on the D3 Regimen. Cheap, easy, and all good for you vitamins. It can lower your pain levels and slow down the ramp up. Living on two hours sleep for months will make you feel pretty rotten. Posts are not 'boring' nor are there any
  14. Yes, it is an emergency. There was a PA or NP, I don't recall exactly, at the conference who wanted to treat CH in her own practice. Well, she went through a lot to get licensed and some additional education to allow it and a Neuro to attach to in whatever way they insisted on for licensing. She treats every Ch'rs call as an emergency! I call that very awesome! I think that she just does Ch, but perhaps other headache issues too. She was great. Patient first - this is an Emergency! They always get seen the day they call her office!
  15. I have been on it for at least 5 years now. It has been a huge help!! The 10,000/day keeps me at about 103-105ng/ml year round. I used to drop it down to 5,000 during the gardening months when I was in the sun a lot. Now the sun sets off my head, so I don't get out there in the heat of the day anymore. My blood work will be repeated next month and I don't expect my levels to have changed much. I am not sure about the raising of the blood value. To date, 10,000 has worked out very well for me. If I want to see if it is really working I just need to miss taking it for two days. Then the bea
  16. I posted a bit in Research Thread. It is two years old, but it is a lot more up to date than your Neuro! The Dr. McGenney is a member here. I would print it out, take it to that 'doc' and let him read it while you watch!!! The guy is killing you slowly with a ton of meds like that and no O2!!! He needs to get it together and know the proper way to treat CH today. O2 is the #1 abortive, triptans are there too, but in injection form. Or the nasal spray if shots can't be handled by the patient. Verap is the main preventative, and Pred is used in a short burst til the Verap kicks in. This is
  17. The TSA is very specific these days about what they are checking for -explosives! Not any meds or other stuff. Once you are through the TSA checkpoint, you can buy drinks in the shops on the concourse that you are allowed to take on the plane. I recently took on this hurdle after avoiding flying for 15 years. Got through just fine. Had shadows all one day after the flight, but that was it. It was over the Equinox which is my traditional start date, so, pretty scary! However, I was not in cycle nor did it precipitate one. Good luck! If you have a SPUT, take it as a preventat
  18. Welcome Seth! Read and read! Ask all the questions that you have. Someone will have an answer likely. ATB
  19. This is two years old, but Boston Headache Doc is quoted several times regarding current therapies for prevention and treatment of CH. A good read!!! https://www.neurologyadvisor.com/topics/migraine-and-headache/treating-cluster-headache-weighing-current-therapies/
  20. And the Target Bulls Eye? Seems like the remaining one used a peacock. Yes, I used to sit and stare at the symbols on Saturday morning waiting for the cartoons to begin! Here's a bad one. I also remember waiting at night for programming to start! We watched one that panned in thru a keyhole. That was pre Mickey Mouse Club days for sure! It began programming about 6pm I think. And went off about 10pm.
  21. I loved that show!!! I did not remember his characters name. Good catch!! How about My Favorite Martian? Remember that one?
  22. Batch does suggest separating the Calcium from the Verap if you are taking it. Offset to prevent issues as stated. And that is the likely reason for using K2, not K! You copied this from the site Batch has? Can you post the link to that? Thanks Brain!!!
  23. Excellent CHF. Not working on the board for me either! Did he get an email or PM from here? I'll pm our wonderful IT wizard about it.
  24. Yes, it is. If you look it up, that nerve covers half your face and 1/4 of your head. That includes everything on your face and those teeth and sinuses. It even includes the hair on your head in my experience.
  25. Sounds like a good plan you have. I have had and read of people having a reaction to the fillers in some meds. Like a name brand will have Y fillers and the generic will have X fillers. So, some people can take one and not the other. So, you might consider a different multi. Just a thought if changing the fish oil does not solve the issue. Are you taking the Benadryl? Batch is indeed not getting PM's at this point. Not sure why. But, he is very devoted to helping all and will show up when he is available. He never has let anyone down who PMed him to my knowledge. But at the mom
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