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ClusterBusters

spiny

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Everything posted by spiny

  1. spiny

    Fall is coming

    Actually yes, it comes right on schedule on the Equinox. It helps me to prepare knowing that too.Kind of 'classic; isn't it? To cover all cycles, I should say the week of the Equinox.That covers them all.
  2. spiny

    Fall is coming

    I definitely get the fear quotient. My cycle will begin on Sept. 21st. I make sure that I have my gear all lined up and ready to go. Plenty of O2 on hand! Also, I stay on the D3 Regimen. Are you doing that? It really does help many of us!! I up my D intake to 15,000 as opposed to the normal 10,000/day. In addition, I make sure that I follow a set sleep schedule. Get up the same time daily, no matter what. The better armed that I am, the less stress I have. If you bust, then do that in advance. Put that info on a closed board - Members Only - and you will get a lot of replies from those who rely on that. Then, just breath deep, decide you have done all that you can and move on with life. Good Luck!
  3. spiny

    Support Group

    I am kind of lost Hosie. You made two posts about setting up a conference call for CHers, yet you are brand new and are not familiar with this site yet. Since they are duplicates, I will delete one for you. No, I do not know of a 'call group' in existence at this time. This is a 'support' group! Our function is to help people with CH and related headaches. Do you have CH? ECH or CCH? What do you take for it? It seems odd to join a group and immediately say that you 'want to start some type of support group'.
  4. spiny

    Constantly drooping eye

    I had that after a long episode. It would not normalize. I went to the Eye Doctor and was told they could do nothing till I was CH free for two years. It made reading very hard and I love to read. It took several months, but by reading and lifting the book a bit higher every week or so, the muscles above the eye strengthened and brought the lid back up. I do have lovely wrinkles on that side of my forehead now. But, there is no droop to deal with. I have found the pupil constriction to be permanent. It is not a big deal except in low light. It will not expand to allow enough light in to see well. It is better than when in cycle though.
  5. spiny

    Atypical cluster or something else ?

    Tony, the member really needs a MRI!!! The symptoms are odd. I would definitely make that the number one priority for the member. It is an 'odd' set of symptoms and that makes the MRI more imperative in my mind. For me, a sinus infection has obvious signs of infection: nasal discharge that is green or yellow. One side may get worse than the other if I have been lying with that side down. Otherwise, no. I have not found bleeding to be part of a sinus infection. In addition, with a sinus infection, my whole head hurts, not one side. But, we do know that some things being wrong in the brain can cause pain and symptoms. We had a young Canadian member who was having 'mostly' cluster symptoms, but with some odd bits mixed in. He finally had the MRI after over a year and they found an aneurysm and operated. He was pain free post surgery. He had daily pain that fit CH best of all the headaches, but it was not CH. He also had some 'odd' symptoms. Being in the Canadian system, meant that it took over a year to get a MRI. Please encourage him/her to push for that MRI like they their life depended on it. If medical won't do that, then a scan might help show an issue and then they would agree to the MRI. The symptoms worry me. I want to know how this turns out in the end, so please give us an update if you get one. As a side note to this, a friend took her grown son in for hernia surgery last Friday. He had been complaining bitterly about the pain from the hernia. Doc said he should not be in that much pain and blew him off, but did schedule the surgery. When they went in, they found a tumor along with the hernia. Ergo, the excessive pain in the belly. The tumor was pushing on internal organs. Had they bothered with a scan, they would have found it sooner. And he would not have been left to suffer waiting for 'elective' surgery during the pandemic. Seeing what is or isn't inside is a good diagnostic tool to use!
  6. spiny

    Sleep and Cluster

    How very interesting! My daughter has a sleep disorder. She may be up for 22 hours and then crash for 12. And it is not 'regular' in the time of day. She does have better days and worse days. In addition, she has Ocular Migraines without pain. But the visual disturbances are severe. My husband 'dreams' all night. I will push for a sleep study when we get out of the current mess. I sleep rather light. I am essentially in 'mommy' mode' for and old dog and and old cat. So I expect that. I do have periods when I hear nothing and my husband hears the critters. Sleep deprivation I seem to cope with fairly well. In cycle, I get two hours of sleep per 24 hours most days. That, combined with a 6-8 month cycle, should have made me comatose. But, I just got really short tempered and carried on. I did however inform all that there would be no Santa the next time.
  7. spiny

    Cycle Time

    Hi and welcome Nagroms! Mine taper off somewhat. The normal 4 per night becomes three and so on. I do not trust that I am out of cycle for a week with no hits. I do not try the beer test for a few more weeks. Big trigger! ATB!
  8. spiny

    Sleep and Cluster

    Nice video! I have wondered about the REM part for a long time, as my Nocturnal hits begin within ten minutes of falling asleep. Which seems pretty early if attached to REM. However, I also have dreams that begin that soon too. I really want to be around when they figure CH out and have the answers we so desperately want!
  9. spiny

    more positive press

    That is a good read Pebbles!
  10. spiny

    Getting relief again after a reset.

    So nice to read this Mit! Congratulations on getting it under control again!!
  11. spiny

    Best breathing techniques with O2

    CHF, for many years I have done O2 breathing without benefit of O2. Think stuck in a store and trying to get out. Using the method I use with my O2 at home, I can hold off a hit for a while. With caffeine backup, I have aborted with this method. And I am referring to the hard exhale with a crunch and deep inhale portion. It really is a good skill to have for just about anywhere!
  12. spiny

    Meds, Dosing, and Schedule?

    When on a Pred taper, my script says something like: Take 3 times a day for a week, then twice a day for a week, then once a day, and then 1/2 per day. I space them out. If I took 60mgs at once, I suspect I would be very wired. Well, I am wired on it, but that all at once would be hard for me to do. Perhaps check with the doc?
  13. spiny

    Another sleepless night

    Hugs and best of luck for today and others too!! Have you had your D3 levels checked? That would give you an idea of how low you are at this time. No, you cannot take 50k daily without keeping up a rigorous testing of your D levels. How much are you taking on the days you don't take the 50k dose? Any? I take 10k per day, every day. In the past I have been able to go down to 5k due to sun exposure in summer. I am not doing that this year as I am not out in it as much due to heat intolerance. At the 10k /per day, my D3 stays at 100 -105. I don't recall the units at the moment. My PCP knows that I supplement heavily and has no issue with my levels being a bit high since my other labs are good. If I go without it for a couple of days, I get hit!
  14. spiny

    First post here, and a more resilient cycle

    What you are doing with the O2 - inhale, hold, and exhale with a crunch seems to work best for most of us. Not being able to get enough O2 per breath sucks. You need the cadence that works for you and plenty of O2 to maintain that rhythm that is most effective for you. It is often the case that a 25lpm regulator is needed. So, I am not surprised that the tank with the 25lpm works better for you. If you can outrun it, you need a higher flow rate. If you still have a shadow when you quit the O2, the hit will return for most if not all of us. And when you are PF, do your post breathing as well.I have walked away from my tank with a 'minor' shadow, only to have it ramp right back up and I do a bat turn back to the O2. It needs to be completely gone for me and then 5 minutes of post to remain PF for a some number of hours. And heading to a new locale can begin a cycle sometimes. So, I suggest that you keep the Benadryl in the mix. Maybe only at night when you are traveling, but once there, go back to taking the ones during the day if possible. The different pollen can be a big problem. ATB and Welcome to the site!!!
  15. spiny

    Another sleepless night

    It very well may be the D3 that is working for you now. Batch often recommends returning to a loading dose if you are not getting relief. Awesome that it is working for you!! Occasionally I will forget my D3 vitamins. I am fine if I miss only one day. If I miss two in a row, it is pain City. So, I know that for me, the D3 is pretty much good magic!! Keep us posted Kat! It would be so lovely to read that you have been a day or three with no hits. Yes, the diagnosis of CH is rather devastating. When you search and find out what it is, you sort of want to throw up because the outlook has been so bleak! But times are changing and hopefully the new research will mean better treatment for all.
  16. spiny

    Best breathing techniques with O2

    Many find that looking down toward your feet helps. If you are a 'rocker', this seems to come naturally. I tend to rock and stare at the floor with unfocused eyes. Just me perhaps. When you first begin, exhale with force - add a crunch at the end. This gets repeated for several breaths. Push out the CO2 and suck in the O2 deep. Hold a few seconds and repeat. Fast, shallow breathing is usually not the fastest or best way to abort. You want that CO2 gone ASAP. How fast you go just depends on you and how your head responds. I will start out fast and hard, then let up till I hit a sweet spot - one where I notice a significant reduction in pain. I will repeat that pattern for that hit. For me, it varies as to the time to find the 'spot' that is going to work with each hit. In short order, you will know what works for you. I use the tube as I cannot stand the mask on my face. If I see that the bag is filling too fast, I turn down the flow. I may go up or down a few times in a hit. Pain worsens, dial it back up and get to work. Pain lessens, begin to relax and go with the flow. I vary the flow from 25lpm to 5lpm. My post is at a rate that matches my relaxed breathing post hit. Often, if I am tired, it will be at 5LPM or lower. CHF will likely be along to direct you to a paper on how to use your O2. I haven't time atm to find it. But, the above will get you going. To conserve, adjust the flow on your regulator to match your breathing. That is all. To make you visit as short as possible, do the forceful exhale and deep inhale. If the bag is filling too fast, turn the dial down till you catch up. The focused technique is important to me. I usually get a good abort in about 5 minutes and then 5 minutes post. For a really bad one or one where I had to wait to hit the O2. that time can be doubled. If you can, grab some caffeine on your way and chug it. It often helps speed the abort. Not sure if you use can caffeine or not, but if you can, it helps. Which conserves your O2.
  17. spiny

    Ramp up. Need help

    That was my cycle pattern before I started the D3 Regimen. The first year, I had lower level pain and slower ramp-up with incoming hits. I continued on the regimen all year and the following year is when I got the relief that I have now. It took a while for me to get full relief. I suspect it was because I was in high cycle when I began the vitamins. Also, I had one false start on it as I took the B vitamins. That I could not handle as the B12 made my tongue peel, which was a misery for about 10 days.
  18. spiny

    Ramp up. Need help

    Kat, I was a mild chronic early in my CH career. My hits were daily, but with a low level of pain. Then I got a 10 year break. That ended when I sipped a beer and got hit almost 15 years ago. That was quite the surprise. The pain level went way up! This time around I have been Episodic with 6 to 8 months cycles beginning in September every year. I get four hits a night and they last exactly 2.25 hours with a 15 minute break between hits. Lack of sleep becomes a real issue as I only sleep two hours in twenty four. Have you had your D levels tested?
  19. spiny

    Please help with verapamil quetions

    I would agree with Rod. Pred makes me hyper. Wide open for hours on end. And on occasion, I feel like my head and behind are no longer wired together!! Are you taking all your Verap at the same time, not in two doses? That is not the norm. Not the way it is meant to be taken either. Does your Doctor approve of taking both at once? Just wondering. In addition, the short acting is better for CHer's, not the Extended Release. Have you checked your blood pressure an hour after taking the verap? You really should. It will drop with the verap and that will make you dizzy. And if you are taking both at once, that could be the issue.
  20. spiny

    Ramp up. Need help

    For the last year, I have just done the Benadryl. In the past, during cycle, I did both. Now, with the D3 and a bit of maintenance, I have not had a cycle in over two years. Not to say that I don't get the occasional break-through or random hits, I do. But they are milder and usually a one of, not the four brutal hits that I was accustomed to in cycle. Life is good.
  21. spiny

    Ramp up. Need help

    Taking it twice a day means it is extended release. The regular one you take three times a day. Your script likely says 'ER' on it. Not sure why, but the old fast acting works better for us.
  22. spiny

    Ramp up. Need help

    I wish I had answers for you Kat! It is hard with the presentation of your symptoms and such to say 'Oh yea, those are CH.' I just don't have a good answer to that one. The ramp-up at the same time of year does sound like it of course. CCH's have that occur. And some people begin with not so 'typical' CH, only to have it become more obviously CH over time. On the other hand, because there is one, you are on the Extended Release Verap. The short acting works better. As in you take it three times a day, not twice. Patients have a better response to the short acting version. Can you get your doctor to change that so that you can try it? And 320mg/day is a fairly low dose. So, you could get the short acting and go a bit higher to see if that does a better job. Just make sure that your BP is okay with a higher dose. You are taking the full D3 Regimen, right? The vitamins all work together. Have you added Benadryl? Sorry, I don't recall. Hugs!!!
  23. spiny

    Vitamin B complex

    Taking the B will not work against you from my understanding. You should be fine taking it. If I am recalling correctly, Batch recommended it at one point. Perhaps he still does. One small caveat: B12 can make your tongue peel. Only for some people, but that is why B12 is often given in shot form. Your tongue peeling is not pleasant. It will recover pretty quickly and causes no lasting damage that I am aware of at this time. So, if that does happen, you will know why.
  24. spiny

    Is it Cluster Headache - need help

    Unfortunately, that is common. Have you tried the nasal spray? It will work faster than a pill and what you found this morning is why it is recommended that CHer's use the nasal spray or injection. A pill is often too little and too late getting into your system to work. The Trigeminal Nerve feeds your whole face on one side and 1/4 of your head - the front quadrant on your CH side. It has three main branches and many smaller ones. Did you try an Energy Drink or coffee or perhaps a V8 Energy? Caffeine helps a lot and many swear by the Taurine in the energy drinks. Slam it down at the first twinge. The waves of pain I think many can identify with. For me, it is like every wave is a bit higher, the tide coming in. As it ends, rather like the tide going out - the branches of the nerve don't light up all the way to the end of the branch. It feels like my brain is going back into my head at times. Have you read the links shared with you yet? They give a ton of info! Had an emergency in the house, so did not hit 'submit' yesterday. ATB
  25. A great presentation Tony!
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