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ClusterBusters

spiny

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Everything posted by spiny

  1. spiny

    Getting circumcised

    Dana, you can request that the anesthesia not contain any epinephrine. They can do that. Also, you can request that O2 at 15lpm minimum be waiting for you with a non-rebreather mask when you wake in recovery. I have requested both for a few surgeries last year. I woke from one with a hit and they were right there with my O2 cranked as requested. I did not get told to 'lie back down now' as they were told not to do that either. One surgery I did not remember the epinephrine. I got 10 hits after I left the hospital. It was a lousy day and night. Just tell the anesthesiologist when they come by prior to surgery. ATB!
  2. spiny

    Intro / Vitamin D

    Okay then. You have no O2 and that sucks big time. Your Neurologist should have prescribed that right away. Some don't, incorrectly I might add, due to insurance hassles. But, it is your best abort out there. Has he put you on a med like Verapamil? That is a first line treatment along with a Prednisone taper for a week or two while the Verap builds in your body. I suspect that you have read the links given by CHF. They will be valuable to you.
  3. spiny

    Intro / Vitamin D

    Welcome RSG! I am going to message Batch for you. He is the D3 Guru! Very nice and most helpful member of the board. I use the D3 all year to prevent drops in my D3 levels. It can be a real miracle for some. Even if you don't get pain free, you will likely lower the intensity of your hits and they will ramp up more slowly. Your are right, your D is way too low. You are looking for it to be around 80 -100ng/mL The Regimen is not just D3. There are other vitamins needed to go with it. But, it is all stuff you can buy locally or online.You can type D3 Regimen in the search bar and find ton of stuff. Can you imagine how heavenly it is to take your vitamins and prevent a cycle? Rather awesome. Drat, just remembered that Batch is having connection issues. Type D3 into the search bar and dig in!!! It is about 5-6 vitamins and some Benadryl added for those of us battling allergies. What tools are in your box now for fighting your CH? O2, energy drinks, Verap, etc. Glad that you found us!
  4. spiny

    Sphenopalatine Ganglion Block

    Thanks for the update! I would loose it if I saw that needle in my head!!!! Wow! PFDAN
  5. spiny

    New here

    Please let us know how the visit goes Kat. I am glad that you have had the scans already. Perhaps this group or guy will be better able to pin it down for you.
  6. spiny

    New here

    Welcome Kat! Have they done a scan of scan during these work-ups? That is rather important to rule out other issues in the noggin. There are some lookalike headaches that a drug called Indomethacin that is used. If you experience relief, you have one of the hemicrania's. If no response, then look closer at CH. It you think about the pain that you describe, it would be referred to 'as I have constant pain there that is severe at times and then runs in the background and jumps with certain activities.' The hits are separate, but the shadow in between means that you in in pain all day, but with distinct period of pain escalation. Verap is normally the first med given , It is started at a low does and ramped up until the hits stop. Some CHers take huge doses to attain relief. Topamax is a secondary drug in the box. We often refer to it as Dopamax. It can make you feel really drugged up and still not provide the relief. O2 is the best abortive. Most doctors do not know how to instruct a patient on HOW to use it for relief. And it can be difficult to get insurance to pay for it. They do respond to Pred. You responded to the steroid, so there is that. You need a scan. And support. If you are female, they will, out of habit, throw you into the migraine box. Pred is usually given to provide relief while the Verap builds up in your system. It is a temporary med due to bad side effects. Verap is taken at anywhere from 240mg/day up to 940mg/day. It must be monitored for your heart function. Since you are pretty new to the CH world, I would not be concerned or held back by the fact you do not exhibit eye swelling, etc. Ch can and likely will, morph over time and you likely will get those little bits and pieces too. Early on, it can difficult to pin for some sufferers. If the O2 did not help. likely it was administered at at a low flow and without instructions on HOW to breath it. So, failure there may be sue to physician ignorance. A neurologist is not a headache specialist. If you can find a specialist and see them, you likely would get better info. I know, not always easy to do. There is a protocol many use here called the D3 Regimen. It consists of vitamins and aims to reduce inflammation. A large percentage of Chers have attained pain free status with the alone. Just store variety vitamins and no script needed. ATB
  7. spiny

    How Does End of Cycle Come?

    Welcome Andy! It seems that for some,they just peter out. Others wake up one morning and realize they slept all night. For me, I often still wake, to find that the hit is just a hint and go back to sleep. Instead of four 2.25 hour hits per night, I get three. It just winds down for me. Others are different. Mine start with one a night and then grow to the standard four. Often, I will still wake at 'hit time' and there is no hit. That does take a few weeks or more to stop. But hey, a glass of water trip to the bathroom and back to bed is GOOOOOOD!!!!! Stay with us! This is the best place I have found for CH. Gave me my life back.
  8. spiny

    Exercise / Running while in Cycle

    Darren, Hi! I think that what many of us want most is what we consider 'normal' out of life. With that goal in mind, we test the limits. NO one wants to live in a cage and CH can make us feel 'caged'. If you are running successfully, continue. Triggers, as you noted, usually cause a hit quickly. Sip of beer perhaps. I have gotten that brain crusher before the beer was to the shoulder of the bottle - like two sips. So, yea, for me, triggers are pretty darn immediate. Hours later? I would vote for pollen, weather change, passed by an asphalt truck kind of thing. Triggers are very quick for me. As long as you are benefiting I would continue with the work out. It is so good for you mentally, right? Frame of mind is pretty darn up there in 'Important Stuff'. ATB!
  9. spiny

    Guest users. Welcome!

    We work different hours. I am usually the early bird pulling out worms and weeds. As a team, we get things taken care of pretty quickly most days. But, THMH is the good looking one!
  10. spiny

    O2 trick

    I have feared the empty tank for years. Also, it made me a bit nuts when it was empty. However, there is a way to get some more O2 out of the welding tanks at least. Without the regulator, open the valve. I always hear a lot of O2 coming out with the regulator removed. In fear of running out one night, I took two garbage bags and set up a redneck bag. Just a garbage bag with a corner cut off to slip in the top and shoulder of a 2 liter bottle that I cut off. Then tape up the bottom so the bag is sealed except for the bottle opening. I held the opening of the two liter to the output of the tank and filled the garbage bag. It easily filled three bags with O2 left over. Those fluffy bags were waiting for me when I needed them. The bags do leak, so you may need to top them up so they last over a day. ATB!
  11. No problem Gail. I am so sorry it is hell right now! Have they checked for look-a-like headaches? It is sounding like that might be a good thing to check. There are several TAC's very similar to CH but they do not respond to O2. I would recommend that you discuss this with your doc. They can get stuck in a grove and lose sight of that aspect. Some are treated with different meds too. Do not be concerned about your posts. You are suffering badly and we all get pretty darned scatter brained when that hits us.No matter our age! Age is not a measuring stick here thank heavens. I would be out the door too!
  12. Terrific about getting the scans work done. it is to rule out other medical issues. CH often will become more intense over time. Then, for some, it backslides into a moderated hit that is easier and lower on the pain scale. Aging out has been stated for decades. I wonder if they just gave up or it reduced in intensity and they dropped the meds and just carried on alone? Your cycle may become yearly or they may become longer, but on a tri-annual schedule. You may get a ten year reprieve! There is no telling for certain. Everyone is different and yet the same. I would not worry about it, just stay prepared. You will manage it.
  13. spiny

    Slashdot article , FDA approval

    AARP had an article that discussed the people over 50 in Medical legal M J in states that allow it for medical reasons. They stated that it helped people continue to work and not have to retire early. That was a shocker. But, hey, what did the elder folks do through out history? Take a medicinal alcoholic little glass of elderberry wine or a shot of shine. The best thing for chronic pain from old injuries or just age that they had available. Imagine Granny loosing her nightcap due to Abolition. She would guard her stash I bet! The world is changing. For the better in some ways!
  14. spiny

    Age? Altitude? Verapamil? Zomig? Exercise?

    Hey Andy! Glad that you found us. Falling barometric pressure is a main trigger for me. And, I live on a little mountain! So, going down the mountain after the Fall Equinox is problematic. Going down is fine - coming back home can be a bear. I attribute it to less pressure out = more pressure in. Very stupid simple idea. but how I look at it. It can work differently for others from my reading. Your doctor is correct about O2 being difficult to get through insurance. But, there are ways to push for it. I suspect that someone will post the piece on how to go about it here soon. I am very glad that she is pushing for the scan first! Rule out other conditions first. If you come up blank there, you can set up a welding rig and bypass insurance. Set up costs a bit, but the monthly outlay is cheaper than Medical. So, if you have to foot the bill, that is an option too look into. You should look at the D3 Regimen. It is well documented and has worked wonders for a large percentage of CHers'. It consists of a list of vitamins you take daily with the aim being to raise your D3 levels and reduce inflammation. It has helped many go pain free and others with a reduction in severity of hits and a slower come up so you can treat it faster and more effectively. Or get home before you can't! I would suggest getting your D3 level checked out as well as the scan.Many of us have low D3 levels in our blood and returning that to an acceptable range has been pretty magical for lot of us. Batch is the member who has done all the work, with the involvement of physicians along the way. Minimal cost and no insurance in the middle. Aging out has long been a statement among doctors. I believe that the oldest known Clusterhead is around 90+. We have several members who are in their 70's and still have active CH. I had a great remission that lasted ten years. I started visiting the mountains and surprise - the beast is back! I cope by taking some caffeine at the start of the return trip. If there is no falling pressure due to weather, I can get through fine with that for most trips. A two lane mountain road is no place to have a hit. ATB and keep asking questions!
  15. spiny

    Emgality

    The main problem I have heard of from Verap is that some on high doses cannot get completely off of it due to an increase in blood pressure. They have to continue taking it due to having high BP when weaned off of the drug. The dose is then reduced to what is needed to control the blood pressure. Otherwise, I think, this is me of course, that if you are taking it for CH and it is not working, you need a higher dose or just toss it. If it is not working, why put your body through it? If you are at a low dose - 320mg/day, then an increase may well help. But you need to monitor your BP when changing the dose. It tanked my BP so bad that at 240mg/day, my resting BP was about 80/60. I tossed it. It was not working at that level and often does not for CHers'. They tend to need high doses of the stuff to get PF.
  16. For some Cher's, the time can change like that, yes. How long have you had Clusters? Any Scans done when you were diagnosed? I see from other posts that you are young, so perhaps you have not had many cycles? CH can and likely will morph as you go through the years. So, it sucks, but is easier to accept that it will likely change on its' own.
  17. spiny

    Emergency room experiences anyone?

    It is so good to read of a positive trip to the ER! As you have read, it is frequently a disaster. I definitely suggest that you read up on the D3 Regimen. It includes Benadryl for anti-histamine properties. Very simple and a big player for many in becoming pain free.
  18. spiny

    O2 trick

    Yuck. That hurt. A lot!
  19. spiny

    Humanitarian

    I have a Cluster Warrior Tee. My only bumper sticker has been 'Odie For Presideent' with a hand drawn pic of Odie!
  20. spiny

    O2 trick

    Check and check! I will keep this in mind!
  21. Hey Eileen! When will we have a schedule to select what we plan to attend? 

    This is my first conference, so a tad behind in how it is running this year. I know that Bob does an open on Thursday at 5pm, correct?

    Thanks! :)

  22. spiny

    O2 trick

    THMH - I am aware of the oily rag situation. Otherwise, what would cause a problem? You should not have a flame with O2 period, so flame or spark is out.
  23. spiny

    Guest users. Welcome!

    Hi there Chadman!
  24. spiny

    Humanitarian

    Oh yes. Definitely!!!! Thanks BoF.
  25. spiny

    O2 trick

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