http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?catselect=supporterscorner New CH.com Forum en-us New CH.com Forum Sat, 25 May 2013 21:53:14 GMT http://blogs.law.harvard.edu/tech/rss YaBB 2.4 Revision: 1.28 30 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1159993470/48#48 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1159993470/48#48 Sun, 19 May 2013 20:34:07 GMT There is also a half way point too. I like my supporter to be around, making sure I've got my O2 going but just letting me get on with it. During the CH I don't want to be fussed but I don't want to be totally alone either.<br /> http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1365539440/4#4 New CH.com Forum/Children and Cluster's http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1365539440/4#4 Wed, 15 May 2013 19:37:02 GMT Good of you to be aware and diligently working on improving your daughter's unfortunate situation.<br /><br />My CH's started at age 11, so I know what it's like to be 13 with severe head pain.<br /><br />Based on what you wrote, I honestly believe you should get a 2nd opinion from a headache specialist who will provide your daughter with an MRI and CAT scan to rule out anything other than headaches.  <br /><br />From there, with trial and error, over time, your daughter and you and the doctors will learn what is effective or not for your her head pain.<br /><br />Sincere best wishes! <img src="http://www.clusterheadaches.com/yabbfiles/Templates/Forum/default/wink.gif" border="0" alt="Wink" title="Wink" /><br /><br />-Gregg in Las Vegas<br /><br />PS  Frozen peas or ice cold washcloth may provide some relief when applied to head! http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1323637410/5#5 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1323637410/5#5 Sun, 5 May 2013 12:57:20 GMT Hot towels sometimes help, and if you put them in the microwave and get them as hot as you can stand them they can help.<br />I have to use a hot shower, as hot as I can stand it...<br />and pace or run in place.<br />The O2 this site promotes works well but not all the time.<br />Try these things, and I hope you find some relief.<br /> http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1364986400/4#4 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1364986400/4#4 Wed, 24 Apr 2013 21:24:32 GMT *claps*  Good for you to be proactive before the next cycle starts!<br /><br />I'm actually AubanBird's supporter, so I'm only going to add a few bits to what he has already said.<br /><br />The smiling part is definitely true.  In the beginning I was really scared for him because of some of the things he would try to do during a hit.  Then he started coming out of the bedroom smiling to me, and it just became this "ritual" of ours to reassure ourselves that at least for the next little bit, everything was going to be ok.<br /><br />Something that might do your girlfriend some good, is to give her a task to do during a hit.  Women, for the most part by nature, are nurturer's, we want to help and make things "right".  I've gotten quite adept at setting up Auban's Trex injectables, and I can easily fend off other people to give him some privacy if he has a hit while we are out in public.  Maybe having her set up something soothing for when the hit is over with, or grabbing you a drink...it will make her feel like she is doing something that IS going to help you, just not DURING the hit.<br /><br />The other thing I'd like to say is that you don't hide the hits from her.  If there are warning signs, let her know them so she can watch out for them with you. Sometimes I'll see a sign that Auban is about to get a hit, but he hasn't picked up on it yet.<br /><br />I hope some of these suggestions help you and your gf out.  She deserves a good dinner and a date for being there for you. <img src="http://www.clusterheadaches.com/yabbfiles/Templates/Forum/default/cheesy.gif" border="0" alt="Cheesy" title="Cheesy" /> http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1365858170/2#2 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1365858170/2#2 Mon, 15 Apr 2013 06:21:36 GMT Supporters for President!!! <br /><br />You'll likely be fine with linseed oil as a polish. Also known as flaxseed oil.<br /><br />Odourless, remarkably effective, and so good you can even eat it. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1360264483/5#5 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1360264483/5#5 Sun, 24 Mar 2013 00:11:34 GMT Hey Strong Mama - we are dancing the same dance but in different states. While I don't have twins I completely get what you are going thru. This site and clusterbuster.com has made me know I am not alone, crazy or unable to do something about this. NO ONE knows the true extent of the pain your man is in expect all the sufferers and supporters.<br /><br />Yes, all others hear headache and the word completely dilutes the true depth of pain and despair CH sufferers are all in....the clueless say take some narcotics, have a drink, smoke a joint, "I get migraines too"....its all blah blah blah. NO ONE GETS IT until I tell them my husband asked me to take his life once because he couldn't do this anymore. That makes them stop and think.<br /><br />When asked how do I handle it, I say I get by with a little help from my friends...those that truly understand on these message boards and a few friends who continue to ask how we are doing and say prayers for a remission from this pain.<br /><br />Hang in there and let me know if you want to chat w/ another supporter. hugs<br />Di http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1358602934/8#8 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1358602934/8#8 Sat, 23 Mar 2013 20:34:40 GMT <b><a href="http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1358602934/7#7">purpleydog wrote</a> on Mar 22^nd, 2013 at 11:36pm:</b><br /><div>Here is what my doc said about Vit D. You CAN take too much of it, and it stores in your bones. </div><br /><br />I think your doctor is a bit confused about where vitamin D is stored as it is fat soluble so bones are not really where it will be stored.<br /><br />As a reference - Vitamin D3 Distribution and Status in the Body - Journal of the American College of Nutirition, Heaney et al:<br /> <b>Quote:</b><br /><div>Results: Mean serum 25(OH)D in all studies combined was 45 nmol/L. At the level of vitamin D repletion represented by this concentration, total body vitamin D would be 14,665 IU for a 70 kg adult woman. 65% of this total was present as native cholecalciferol and 35% as 25(OH)D. Nearly three-quarters of the cholecalciferol was in fat, while 25(OH)D was more evenly distributed throughout the body (20% in muscle, 30% in serum, 35% in fat, and 15% in all other tissues). At the daily vitamin D consumption rates in these animals total body stores provided only a &#8764;7-day reserve.  </div><br /><br />Interesting to see how low a reserve we have.<br /><br />For what the maximum D3 intake should be there seems to be a distinct lack of research. Some papers put the limit at 2000IU (which can be easily exceeded when sunbathing in under 20 minutes), so at 10,000IU and others at 40,000IU or higher. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1309778828/10#10 New CH.com Forum/Children and Cluster's http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1309778828/10#10 Sun, 24 Feb 2013 15:08:12 GMT <b><a href="http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1309778828/8#8">djphrenzy wrote</a> on Jan 20^th, 2013 at 11:24pm:</b><br /><div>In retrospect, I had shadows in my teen years.... I referred to it as a 'cloudy' feeling, but I didn't get a full hit til I was 26.<br /> </div><br /><br />I think I did too. I remember periods where I had a dull pain that would never go away. I took many Advils, though it didn't help. My mom thought I was having headaches because of an Advil addiction... Then it would pass, to come back months later. My first hit was at 17. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1361031657/2#2 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1361031657/2#2 Sat, 16 Feb 2013 18:50:06 GMT I'll second Brew's suggestion. It sounds too simple to work, but for most, it does. Sending some pain free vibes your way, high cycle sucks. <img src="http://www.clusterheadaches.com/yabbfiles/Templates/Forum/default/cry.gif" border="0" alt="Cry" title="Cry" /><br /><br />Joe http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1342363237/5#5 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1342363237/5#5 Thu, 14 Feb 2013 04:53:08 GMT My Neurologist has the same attitude.  My PCP, however, actually told me he very much appreciated my active involvement in my medicine.  He commented "I wish all my patients were as well-prepared as you are."<br /><br />If you find the right doctor, he/she will be excited about new or different ways of approaching a problem.  At the very least, they should be open to ideas they may not be familiar with.  Medicine, after all, is a moving target.<br /><br /> http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1279234194/5#5 New CH.com Forum/Children and Cluster's http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1279234194/5#5 Sun, 10 Feb 2013 17:04:44 GMT This sounds like cyclic vomiting syndrome. I had this while a child . Also called an abdominal migraine. All symptoms that you are describing, sound just like what I experienced as a child. I hope you are still on here, and got a different dx. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1346937435/9#9 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1346937435/9#9 Mon, 21 Jan 2013 17:42:30 GMT If anyone ever said to me "Well at least you don't get migraines!" they would receive a prompt falcon punch.  Hahaha http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1355783512/8#8 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1355783512/8#8 Thu, 27 Dec 2012 08:04:53 GMT I occasionally get sick with clusters, or with their aftermath, or with the occasionally resulting migraines. Zofran (ondansetron) is something that should be in your arsenal if nausea ever strikes. Most physicians will not hesitate to prescribe this if you're healthy, as the side effects are minimal. The only drawback is this med is very expensive, and may not be covered by insurance. In that case, there are other, more old-school, meds that can be tried. Compazine, Reglan, thorazine, and Tigan come to mind.<br /><br />Also marijuana, though obviously controversial, is known to do wonders on the nausea. Keep in mind that this can be a cluster trigger, however. Best to proceed with extreme caution or hopeful desperation.  <img src="http://www.clusterheadaches.com/yabbfiles/Templates/Forum/default/undecided.gif" border="0" alt="Undecided" title="Undecided" /> http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1350070003/10#10 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1350070003/10#10 Tue, 18 Dec 2012 21:04:10 GMT Welcome Mom! I'm sorry we meet under such circumstances, but glad we meet none-the-less.<br /><br />We can all empathize with your position. Each sufferer is different. Some want to be left alone, others want someone at their side. My partner is one that wants me there. For the little it helps, just my hand on the back of his neck, he has told me is comforting through the tears. <br /><br />We've not had episodes like that in sometime, thank G-d. I must agree with Tim regarding a  headache specialist. We've been very lucky and successful at management of my partners episodes. We found a low daily dose of Verapamil to keep them from reaching their full intensity. While this may not be the answer for your son, it is worth talking with the Doc.<br /><br />In any case, as a fellow supporter, I can only say love him as only a Mom can ... and tap into this site for support. <img src="http://www.clusterheadaches.com/yabbfiles/Templates/Forum/default/wink.gif" border="0" alt="Wink" title="Wink" /><br /><br />JJ http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1353795095/1#1 New CH.com Forum/Children and Cluster's http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1353795095/1#1 Sat, 24 Nov 2012 22:46:47 GMT I'm a bit confused by how you're taking your medication (or how I'm reading it).<br /><br />Medrol is a steroid related to prednisione. Something like this is used at the start of a cluster cycle with a taper dose, starting high and tapering off over about 10 days. It will normally prevent most CHs from happening and it allows time for a longer term preventive to build up.<br /><br />Verapamil is a good preventive taken during a cluster cycle. A dose of 240mg is fairly low with many needing 360-480mg a day to be effective and some need around 1000mg. It can take 7-10 days for it to become effective.<br /><br />When you get a CH the zomig will kill off a CH, but also look look at using oxygen (great link on the left) and / or imitrex injections.<br /><br />For a more natural approach, also look at using vitamin D3 - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to <a href="http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=login;sesredir=num~1353795095"><img src="http://www.clusterheadaches.com/yabbfiles/Buttons/English/login.png" alt="Login" title="Login" border="0" /></a> or <a href="http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=register"><img src="http://www.clusterheadaches.com/yabbfiles/Buttons/English/register.png" alt="Register" title="Register" border="0" /></a> - it has been getting good results too.<br /><br />You're right about most people just not having a clue what we go through. However here everyone gets it as we either have CH or they are supporters who see just what we are hit with when a CH hits.<br /><br />Keep reading and you'll learn more than most neurologists know about CH.<br /> http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1353421188/2#2 New CH.com Forum/Children and Cluster's http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1353421188/2#2 Thu, 22 Nov 2012 11:21:34 GMT Thanks, I appreciate your concerns. I'll just bumb this thread from time to time and perhaps somebody that has a child with a condition like my son's. As I mentioned, his "pains" are becoming less frequent. Sometimes, he'd awaken crying and I'd be have a monster attack. My poor girlfriend would have two people on her hands for an hour in extreme pain. I'm so glad that loves the both of us as much as she does. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1347900574/6#6 New CH.com Forum/Children and Cluster's http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1347900574/6#6 Tue, 20 Nov 2012 05:06:52 GMT Damn, such a sad story.I wish I could unread it. Oh you poor family. I hope his cycles end soon. And as much as you don't want to hear it, he will be dealing with them for a great deal of his life. Everyone here is scrambling, beggeing, and pleading for that Magical treatment for these dreadful head aches. I PRAY that I'm wrong about his cycles. Please keep him in a dark room he will NOT want to lay down. Try not to talk to him much. He may or may not take a cold compress and it will take awhile to teach him breathing exercises. Its heart-wrenching know that a little boy is having to endure this kind of pain. The one other thing I do is apply pressure at the base of my neck and right between my eyes on thebridge of your nose. They will hardly give him any "real" relief like what you would hope for. Sometimes they help me a little, but most of the times they don't. Everyone who lives with these has adifferent methods of managing with them. I hope my information but you probably are already aware of them. I have a 4 year old boy too, my biggest fear is that he will get them someday. I wish you and your family the best of luck in finding your son relief. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1353127831/11#11 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1353127831/11#11 Mon, 19 Nov 2012 18:17:49 GMT I convinced him to take one small 3mg dose of Melatonin last night. Best night's sleep he has had in a week. He is still sleeping, he was so exhausted.  It's the fear of knowing one will come, combined with the caffeine to keep it away. <br /><br />He was very hesitant to take melatonin again. Last time he tried it was on a night shift job where he was taking large doses daily for 2 weeks straight just so he could sleep a few hours in the day. It was making him depressive and suicidal. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1341158076/5#5 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1341158076/5#5 Thu, 1 Nov 2012 11:17:27 GMT mine lasted 5 1/2 hours last week,then it started getting less pain and less frequent,the last 4 days nothing at all but felt like a shadow letting me know its still there,had a k4 lastnight after heading to bed,,,,Just wish the beast would go for good so i can get out of the house,been 6 weeks as of now. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1347137828/7#7 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1347137828/7#7 Fri, 12 Oct 2012 17:54:11 GMT Yes, all great advice. Have her login and create an account and read read read. Post questions, vent. We are all in this together. I had a relationship that ended after many years of witnessing me loose my mind. I have know doubt my CH were a big part of our divorce. <br /><br />jason http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1344433814/11#11 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1344433814/11#11 Sun, 19 Aug 2012 02:51:25 GMT Turn the valve on top of the tank to OFF before removing the regulator. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1343444208/3#3 New CH.com Forum/Children and Cluster's http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1343444208/3#3 Sat, 11 Aug 2012 22:32:56 GMT Veronica<br />Except from the thirst, this seems like a "schoolbook" description of cluster headache. Be aware though of other conditions like brain tumors and neck injuries that may  cause very similar pain. My best. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1270865679/6#6 New CH.com Forum/Children and Cluster's http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1270865679/6#6 Thu, 9 Aug 2012 11:58:41 GMT It would be quite rare indeed for a child that young to be suffering from cluster headaches. Ibuprofen is generally non-effective against the cluster pain, so that could be some good news for you. Aside from seeing a trained expert, keeping a detailed log on the headaches, the time, length, etc. could really help in trying to figure out what is happening. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1340834539/0#0 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1340834539/0#0 Sat, 30 Jun 2012 00:50:15 GMT <b>This Topic has been moved to </b>Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to <a href="http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=login;sesredir=num~1340834539"><img src="http://www.clusterheadaches.com/yabbfiles/Buttons/English/login.png" alt="Login" title="Login" border="0" /></a> or <a href="http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=register"><img src="http://www.clusterheadaches.com/yabbfiles/Buttons/English/register.png" alt="Register" title="Register" border="0" /></a><b> by <i>DJ</i></b> http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1340634696/2#2 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1340634696/2#2 Tue, 26 Jun 2012 11:47:18 GMT Once you've had it with the vicious downward spiral that imitrex sends you on, and once you've had it with shelling out hundreds, even thousands of dollars for meds that just keep you on that roller coaster, go here and start reading:<br /><br />Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to <a href="http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=login;sesredir=num~1340634696"><img src="http://www.clusterheadaches.com/yabbfiles/Buttons/English/login.png" alt="Login" title="Login" border="0" /></a> or <a href="http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=register"><img src="http://www.clusterheadaches.com/yabbfiles/Buttons/English/register.png" alt="Register" title="Register" border="0" /></a><br /><br />Oh - and get on the vitamin D3 regimen. Like yesterday. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1224696933/2#2 New CH.com Forum/Children and Cluster's http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1224696933/2#2 Sun, 24 Jun 2012 00:52:14 GMT What helped for me when I was in high school was Verapamil which I took every night before bed and Imitrex nasal spray that I took every morning. I won't say that I am completely cluster free but instead of having 8 clusters a day, I may only have 2. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1234371955/11#11 New CH.com Forum/Children and Cluster's http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1234371955/11#11 Sun, 24 Jun 2012 00:49:26 GMT Hello!<br /><br />I started getting my ch when I was in the 3rd grade. I remember in high school the nurses would know me by name because everyday I was in the nurses office suffering with a headache at the same time everyday. It got so bad that they told me to not come to school until after I get over my headache. It took 7 years for me to get properly diagnosed but once they did I was able to lead a perfectly normal high school life. What helped me to get diagnosed is that I had an attack at my Dr appt and he noticed the symptoms. It does eventually get better so hang in there! http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1337886963/21#21 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1337886963/21#21 Sat, 23 Jun 2012 21:03:33 GMT <b><a href="http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1337886963/20#20">Akina wrote</a> on Jun 23^rd, 2012 at 10:39am:</b><br /><div>Sorry I haven't posted in a bit...been rather busy as of late.  The Pred taper they put Auban has stopped the headaches temporarily and it's been "let's live life NOW" for us. </div><br /><br />That sounds just wonderful. Hope it continues once the prednisione taper completes too. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1340027627/0#0 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1340027627/0#0 Mon, 18 Jun 2012 13:53:47 GMT Thank god for this website, I have spent the last few days reading all your posts regarding what works and does not work, and have been able to find the tools and the strength to attack the BEAST head on, no pun intended.  Johnny only had a shadow headache yesterday and got a full nights sleep last night.  I am not ready to say his episode is over for this season, but am pleased to say he got some real rest.  I am attacking this one day at a time.<br />He is almost finished with his prednisone, he is taking vera, and has the imitrex inhaler.  I also started him on the anti inflammatory that Batch suggested.  He is also drink more than his share of water throughout the day.  <br /><br />Just want you all to know how important your posts have been for me in getting the doctors on the same page.  What you all experience has helped me help Johnny.<br /><br />As I posted the other day Johnny was skeptical about this diagnosis, however after reading to him some of your posts and your horrific experiences he now knows that this is what he has to deal with for the rest of his life.<br /><br />Thank you fellow supporters and sufferers you have and will continue to be a God send for me.<br /><br />Pamela (Johnnysrock) http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1339809463/4#4 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1339809463/4#4 Sat, 16 Jun 2012 18:26:49 GMT I read up on the anti-inflammatory regimen, and am willing to try as it sounds promising.  I went out and got a good daily multi vitamin, fish oil and Vit D, came home and made Johnny take his daily dose.  I think he is skeptical of the relief these things may provide for him, as he has been going through this so long, but he is being a good sport and humoring me with  every suggestion I make.  We are on the water x3 thing too, I keep reminding him to drink and yes he is becoming very intimate with the commode.  The pressure he has in his forehead has yet to become a full blown headache today.  Mainly he is exhausted from the last four days of excruciating pain and no sleep, I will let him rest for as long as he can.  Again thank you for your support as this whole thing has been trying for me.   http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1329615903/7#7 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1329615903/7#7 Wed, 13 Jun 2012 16:54:23 GMT Ohhhhhhhhh your dad is going the same path as my CHer husband.  ER trips multiple times a week...same concoctions except zofran did not help him, made him sicker.  I believe after a while his body needed the dilaudid....made things a whole lot worse for a very long time (years)  He would tell the specialists for a long time, that his headaches would last many hours (like you are describing) so at first they said they were not CH then.  We lost everything but our lives after that.  Our vehicles, home, because of the medical debt and lost wages when he could not go to work.  <br /><br />My advise to you....do everything you possibly can to NOT go to the ER and get dilaudid! (or any other narcotic based drug)  Ask them if you can try the O2 with their masks but at 25 lpm.  You are paying for the ER.....It is soooo hard when you are the supporter and want to help, and they beg you to take them, they threaten to drive themselves, or hitch-hike, even call an ambulance. (Another expence)  I do not wish to even think someone goes down the wrong road first....like we did!  After a while, the hospital will not give him all that anyway, and it will become a fighting situation.  You will be driving to ER further away, for him to get what he needs (or thinks he needs) I have been there. <img src="http://www.clusterheadaches.com/yabbfiles/Templates/Forum/default/sad.gif" border="0" alt="Sad" title="Sad" />  Be strong and loving.  Print much of the information you can get on here.  Put it all together in a folder or binder.  Take them to appointments.  Keep a log for everything.  Meds, meals, hits, timing, and even weather...(or journal) All this may help find what works, patterns to watch for and such.  Good luck and many blessings.  Keep in touch, and research!  I glad you love him so much. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1339038359/2#2 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1339038359/2#2 Wed, 13 Jun 2012 16:38:07 GMT I cringe and cry everytime a new person comes on here.  It means another person is suffering.  Another two people actually.  I understand how much you hurt to see him hurt!!!  But you are in the right place! You are not alone and neither is he. Most meds are definitely long term and must be taken regularly in order for them to work correctly.  And what works for some, may not work for others. (As we have learned on here)  Keep your head up and open.   http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324424794/27#27 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324424794/27#27 Wed, 13 Jun 2012 16:13:44 GMT Hello everyone...it has been a while.  I guess I gave up for a while (not caring about you all...but fighting to find help for him)<br /><br />Oh where to begin? Well...after having many teeth pulled and going under anetesia (sp?), Ch hit hard, strong, and mulitiple times daily again.  (more than the normal 2 -3) He was wondering what he had done to bring it on.  I finally piped up and said it was probably the surgery and going under.  I began to make sense to him. (Thanks to what I've learned here) They wouldn't give him anything stronger, as he was taking pain meds for his mouth already.  We called the neurologist's office.  Went to visit, and I asked again about oxygen therapy.  She asked him if he was still smoking, and he said yes, but quitting (not happening yet) so she OK'd O2!!!  When it was delivered to our home, they also brought a machine that only delivers up to 10 lpm.  I told my husband that would not work, broke out the Opti-mask that I purchased long ago, and suggested we buy a regulator for the cylinders.  He OK'd that by saying: "whatever".  <img src="http://www.clusterheadaches.com/yabbfiles/Templates/Forum/default/wink.gif" border="0" alt="Wink" title="Wink" />  Regulator came and I hooked everything up...then turned on the video from YouTube posted on here somewhere that demonstrated how to breathe it all in.  He watched!  So I let it be after that.  I began to notice that the tank would be moved a bit once in a while.  He is a little better at taking the meds and vitamins regularly too.  He has seemed to have more energy now too.  We decided to get out of the area for a couple days that I was finally able to get off work...I was nervous about the overnight accommodations as we were going to stay with some cousins.  Didn't know if there would be an area for him to get up and pace/walk...whatever he needed.  We never stay anywhere except maybe a hotel, so he has the freedom to work out with the devil at any time.  He brought the O2 tank along!  <br /><br />I made the mistake of asking about how it is working for him once...."works OK I guess".  Dont want to admit I could have been right all along, no thank yous, but I see some changes.  Living a bit more between hits and trying not to miss his medications. Bit more energy and a renewed interest in an old hobby.  Life is not perfect, the devil still comes a knocking, but after I laid everything at my Lord's feet to deal with...I feel somewhat more at ease, and so does my CHer. We get out a bit more often now for short bouts.  (will not take O2 with him for those yet, but Imitrex) He still depends on that too much, but I see tiny efforts, where I never did before.  <br /><br />For me, taking a step back from "CH" was the best thing at the time.  I didn't get the pain, but the information loading up with no way to use it, was consuming me!  Maybe one day he and I will be able to work together better on this.  Maybe he feels that I am not the one with the pain, so I don't know....and that part he is right about.  But somewhere down inside, he knows I care, love him, and am only trying to help.  I believe he also knows...that maybe...just maybe....I have a little.  Thanks to this site and all of you wonderful supporters and friends who have not been afraid to share!!!  God bless you all....I will be around.<br /><br />Beth<br /><br />PS:  Don't give up Hayley...it has been a long road for me, and I am still walking it.  But I know how to pray for you! http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1252611465/32#32 New CH.com Forum/Children and Cluster's http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1252611465/32#32 Sun, 10 Jun 2012 17:11:20 GMT Hoping he'll get a very very long pain free period. I'm putting in an order for one lasting... let's say 60 years? <br /><br />:S http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1335129905/5#5 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1335129905/5#5 Tue, 1 May 2012 04:08:16 GMT Just want to chime in here that yes, HE is the one to choose treatments. That being said though, I really did appreciate having my partner at the time help me process those options and even TOUGH-LOVE me into trying them.  CH can drain one's will to fight, one's hopefulness, or other things... having you there to provide a pain-free perspective has GOT to be valuable. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1333466303/6#6 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1333466303/6#6 Mon, 16 Apr 2012 14:41:26 GMT You've got that right Deb!  This site has been great for us too. Guiseppi (Joe) has been PF for over a year now. In his last cycle he started the D3 regimen towards the end. Not sure if the D3 stopped it, or it had run its course. Who are we to tempt fate though!  Hope that Baer gets similar results.<br /><br />Christy http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1243523501/60#60 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1243523501/60#60 Sun, 18 Mar 2012 23:55:48 GMT I'm really sorry to hear that.  <img src="http://www.clusterheadaches.com/yabbfiles/Templates/Forum/default/sad.gif" border="0" alt="Sad" title="Sad" />     http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1316382536/6#6 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1316382536/6#6 Thu, 16 Feb 2012 19:01:55 GMT Woul also be careful of the smoking cigs and the sucking down oxygen at the same time... I know it goes without saying but if he doesnt seem all there do you want the cigs near the oxygen.. his clothes could also become super saturated...<br /><br />personal question: the lithium isnt for the beast is it? http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1325717280/0#0 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1325717280/0#0 Fri, 6 Jan 2012 12:43:19 GMT <b>This Topic has been moved to </b>Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to <a href="http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=login;sesredir=num~1325717280"><img src="http://www.clusterheadaches.com/yabbfiles/Buttons/English/login.png" alt="Login" title="Login" border="0" /></a> or <a href="http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=register"><img src="http://www.clusterheadaches.com/yabbfiles/Buttons/English/register.png" alt="Register" title="Register" border="0" /></a><b> by <i>DJ</i></b> http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1323717352/3#3 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1323717352/3#3 Tue, 13 Dec 2011 19:00:09 GMT I was a vegetarian for 6 years. My cluster headaches started 2 years before I started eating meat again.<br /><br />Go figure. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1323198580/0#0 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1323198580/0#0 Wed, 7 Dec 2011 00:50:10 GMT <b>This Topic has been moved to </b>Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to <a href="http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=login;sesredir=num~1323198580"><img src="http://www.clusterheadaches.com/yabbfiles/Buttons/English/login.png" alt="Login" title="Login" border="0" /></a> or <a href="http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=register"><img src="http://www.clusterheadaches.com/yabbfiles/Buttons/English/register.png" alt="Register" title="Register" border="0" /></a><b> by <i>DJ</i></b> http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1321315877/7#7 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1321315877/7#7 Tue, 22 Nov 2011 03:32:50 GMT <b><a href="http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1321315877/6#6">mzline wrote</a> on Nov 21^st, 2011 at 5:24pm:</b><br /><div>Hey I'm a twenty CH sufferer in the middle of a nasty cycle. Got my first 10 pain scale of the cycle last night.<br />Nothing is working but want to try the shrooms.<br />Did they work for you<br /><br />Mike </div><br />Dude - You're on the wrong board.<br /><br />Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to <a href="http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=login;sesredir=num~1321315877"><img src="http://www.clusterheadaches.com/yabbfiles/Buttons/English/login.png" alt="Login" title="Login" border="0" /></a> or <a href="http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=register"><img src="http://www.clusterheadaches.com/yabbfiles/Buttons/English/register.png" alt="Register" title="Register" border="0" /></a> http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1318006355/13#13 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1318006355/13#13 Wed, 16 Nov 2011 22:10:17 GMT Damn Lauren that's great news! My cycle started Thanksgiving day last time around, holding my breath this go round to see if "Batch's Magic" will keep beasty at bay.<br /><br />Hoping this is the end of cycle for him.<br /><br />Joe http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1319039236/6#6 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1319039236/6#6 Wed, 16 Nov 2011 17:29:10 GMT Hi,<br /><br />I'm kind of a newbie here, too. My boyfriend and I have been together for four months, and I am trying to get as informed as I can on this site to help him. He's not in a cycle right now, but they aren't really sticking to the normal "schedule" anymore...sometimes they'll just pop up out of the blue, any time of day. It's frustrating to see him go through it. <br /><br />I finally convinced him to try the supplement regimen that Batch is doing, and he's picking up the supplements tonight after work. I really hope that they work, because he is out of motivation for trying new things. <br /><br />So glad you are getting informed. Love this site because we can help each other out!<br /><br />Hayley http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1321035204/4#4 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1321035204/4#4 Sat, 12 Nov 2011 14:21:23 GMT <i>Comforting to know you 2 understand, thanks, and please try not to give up on your loved ones!</i><br /><br />Over 31 years, of watching my CH, 29 years married to me, she hasn't given up on me yet. <img src="http://www.clusterheadaches.com/yabbfiles/Smilies/shore.gif" border="0" alt="Smiley" title="Smiley" /> <img src="http://www.clusterheadaches.com/yabbfiles/Smilies/heart.gif" border="0" alt="Smiley" title="Smiley" /> <br /><br />Joe<div>...(who knows he married way above his station)</div> http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1320615771/2#2 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1320615771/2#2 Mon, 7 Nov 2011 07:44:41 GMT For me flying doesn't trigger a CH. I've done 83 flights this year so far and I've never had a single CH whilst flying.<br /><br />You can take imitrex onto planes and, depending on the country, in some you can also take drinks like Red Bull, etc.<br /><br />It's incredible how the rules vary so much between countries. For my flight down this morning here in New Zealand I'd no need to take my shoes or belt off (like in the UK). I'd an umbrella in my hand luggage and a can of Red Bull there too (neither are permitted in the UK).<br /><br />The only way to find out for sure is to try it to see if it does or doesn't affect him.<br /><br /> http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1318259595/15#15 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1318259595/15#15 Sat, 22 Oct 2011 15:11:49 GMT <b><a href="http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1318259595/14#14">didgens wrote</a> on Oct 20^th, 2011 at 11:53am:</b><br /><div>Thanks all .. well the MRI was clean except a for a large Cyst in his left maxillary sinus ? I dont think this has anything to do with the other its on the opposite side below his left eye. Anyway there is some relief knowing the brain scan was clean.  He had another headache last night around 11:30 (not sure why it keeps being a wednesday night ?? wth?) ,,we instantly tried the red bull and some advil. He said he didnt think it did much help, perhaps minor pain relief. it was gone in under an hour and he went back to sleep.  Ok so now we got see an ENT, Im sure from my reading she will prescribe a steriodal nasal spray to shrink the cyst (polyp). I have read here that steroidal nasal spray can help with the CH's as well .. I know its a short term solution .. any suggestions ?  Oh BTW .. the doc wanted to know if the imitrex worked or not ,, he wasnt closed to the idea of oxygen ,, just wanted to try the imitrex first and see if it helps.  So far my son has had <span>3 of these headaches within a month span. </span>not sure what to expect now <img src="http://www.clusterheadaches.com/yabbfiles/Templates/Forum/default/sad.gif" border="0" alt="Sad" title="Sad" /> </div><br />Three headaches in one month ain't clusters.<br /><br />    Potter http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1318418389/9#9 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1318418389/9#9 Sat, 15 Oct 2011 21:30:16 GMT Hi Sara,<br /><br />I like Joe would still be popping Fiorinal like candy, if not for the lovely Mrs. Baer. You supporters are the best, hope your husband gets relief. Read ... read.. read... ask questions... repeat. <br /><br />Great site, and greater members, we've all been through it, some directly and some as supporters. Within this little dysfunctional  <img src="http://www.clusterheadaches.com/yabbfiles/Templates/Forum/default/wink.gif" border="0" alt="Wink" title="Wink" /> community is a great deal of information and support. <br /><br />You've come to the right place. Sit down and stay a spell.<br /><br />All the best and welcome aboard, when he's up to it, try and get your husband on the site as well. My wife was a member before I was, don't know what I'd have done with out her. <br /><br />Baer http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1318174643/6#6 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1318174643/6#6 Fri, 14 Oct 2011 00:30:20 GMT I have to agree with Potter.  Inpatient is the only way to go. <br /><br />If I were you I would call these places and tell them the situation and that you don't have insurance.  They may be willing to work out some kind of deal or payment plan.  <br /><br />A lot of what's going on with him could be problems from all of the pain killers.  Detoxing is the best thing that he could do for himself right now.<br /><br /> http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1316964666/9#9 New CH.com Forum/Supporter's Corner http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1316964666/9#9 Tue, 27 Sep 2011 14:36:12 GMT Beth...Please listen to me about this one thing !!!!!!!<br /><br /> Oxygen will NOT interfere with detoxing and will help so much with the attacks when he does get them. All you can do at this point as a supporter is help him to get the 02.  Whether he uses it, is totally up to him. <br /><br /> <b>Quote:</b><br /><div>It is almost a 2 1/2 hour drive...but I have a feeling...it will seem even longer coming home.<br /><br /> </div>   You're most likely correct in that assumption dear.  We're all behind you here and we support you.  <img src="http://www.clusterheadaches.com/yabbfiles/Smilies/hug.gif" border="0" alt="Smiley" title="Smiley" />