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ClusterBusters

spiny

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spiny last won the day on August 11

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  1. spiny

    Energy drinks

    Hi 81007! If your hits are regular in their timing, you might be able to take that pill early. Always get hit at 8pm? Take one at 7pm perhaps. It might help you get relief sooner via the pill. Just thought.
  2. spiny

    Surgery while taking Verapamil

    I have learned that you need to talk to the anesthesiologist prior to surgery. Let them know that you have CH and would appreciate no epinephrine in your meds from them as this can set your head off! They can do this. Also, explain that you need access to O2 at 15lpm minimum - 25lpm is better, with a non-rebreather mask waiting for you when you wake up! I have done this for 3 surgeries last year and every time, it worked! Yes, they should also know about the verap. But, apparently, if you let them now the score, they will help you. I had 'sedation' for two scopes last year. Well, I got hit from that little cocktail. I was out, but thrashing all over. So, they went to general to finish the procedure. They told my husband it would be 30 minutes or more before I got out of recovery as they went to general to finish. Imagine their surprise when they had to go right back out and tell him I was up and huffing O2 when they returned to recovery in just minutes! I left in less than 10 minutes and with no pain. Best of luck with your surgery!!
  3. spiny

    Females and O2

    Hey Kat! I respond very well to O2. I have not heard of this disparity before. Perhaps it is a reflection of the doctors not knowing how to instruct the patient in how to use O2 for the best relief. I have found this to be a common problem. If you don't do it right and do the post breathing, it does not work very well. So, I would suggest it is related to lack of physician knowledge as opposed to the sex of the patient. Reminds me of the ratio of men to women with Ch. As more women are being accurately diagnosed that ratio has changed and women are about as likely to have Ch as a man is. It used to be thought of as primarily a disease of men while women get migraines.
  4. spiny

    CH without pain?

    Opiates do not help. Much to the surprise of many doctors!!! I had an upper and lower scope last year. To be done with sedation, as is the norm. I got hit while under the sedation and was writhing around on the table so much they had to give me general to finish the scope. They had been warned prior that I might get a hit from the anesthesia. And asked to have 15lpm of O2 available when I woke up. They told my husband it would be at least 30 minutes before I woke up as they had to do a general. Well, I was up huffing O2 in five minutes with a moderate hit. They were great and handed me the O2 without question as soon as I sat up. It paid off to tell them of my CH and how to handle it! The neck pain is very common with CH unfortunately. Some get it prior to a hit and some after. Over a cycle, it seems to get more painful to me. Many refer to it as a 'cluster knot'. It does feel like a hard knot at the base of my skull. And it will not be massaged out. It is good that you have a way to mitigate it to some degree! When my neck hurts I can be sure a CH will follow soon. There have been a few cycles where the knot stayed the entire time. A thread on how Ch starts for members might be a good idea. Many have posted and asked others over the years. Usually there is at least one other member who can relate to any members first battles with the beast. I find that that one person who identifies with what the new member is saying always seems to show up and add their bit to the conversation. It helps a lot to read that someone gets what you are saying!
  5. spiny

    CH without pain?

    CH is an odd beast. Any area in that quadrant of your head can be subject to pain as the Trigeminal Nerve serves as the major nerve for that side of your head and face. So, a lot of territory to hit. Just a bit to keep in mind. You can have low level Ch's or major ones. You will swear that a particular tooth is killing you. It gets removed, and the pain remains. You can get an ear ache, sinus pain, jaw pain, and on and on. That is why so many have had teeth pulled and sinuses reamed out surgically. So, the pain can be very different at different times. I had a cycle once where every hair follicle in that quadrant hurt constantly. Shampooing was a real bear for about 5 months. Most experience the worst pain at the back of the eye. Others get it in the temple. For me, it is almost always the temple. It feels like my head is being squeezed in a vice while a railroad spike that is red hot is pushed into my head through my temple. I do think that for many it is constant pain, not pounding or throbbing. Personally I started out Chronic, but with low level pain. Then I got a long reprieve. They returned episodic and blew the top off the Kip scale. A cycle will begin with one hit per night and quickly, a few weeks at most, ramp up to four every night. That takes care of the whole night. They last 2.25 hours untreated and there is a 15 minute break between hits. I sleep from 6am to 8am. After about 6 or 7 months I am not a very nice person. Not mean, just no laughter left. So, I tell off traffic and such. And avoid people when I can. CB is the reason I still can laugh and live. There are ways to manage it so you are a real person again. ATB
  6. 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!
  7. 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.
  8. 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!
  9. spiny

    Sphenopalatine Ganglion Block

    Thanks for the update! I would loose it if I saw that needle in my head!!!! Wow! PFDAN
  10. 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.
  11. 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
  12. 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.
  13. 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!
  14. 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!
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