lynn327 Posted January 11, 2018 Share Posted January 11, 2018 I only have one question ? Must all these vitamins be taken at the same time or can they be spread out during the day and still work?? Quote Link to comment Share on other sites More sharing options...
spiny Posted January 11, 2018 Share Posted January 11, 2018 You can spread them out. The one thing that I know of to be concerned about is if you are on Verapamil, it needs to separated from your calcium. I suspect that Batch will check in soon and he is the expert. You can message him too. He is very good about getting back to you. Are you taking any of the meds given for CH? Quote Link to comment Share on other sites More sharing options...
lynn327 Posted January 12, 2018 Author Share Posted January 12, 2018 I am taking 20,00 vitamin D3, 1000 magnesium, vitamin A, 200 mg calcium, 150 Boron. I didn't start the fish oil yet Quote Link to comment Share on other sites More sharing options...
lynn327 Posted January 12, 2018 Author Share Posted January 12, 2018 I am taking 20,00 vitamin D3, 1000 magnesium, vitamin A, 200 mg calcium, 150 Boron. I didn't start the fish oil yet I've been to 3 different Neurologist and final got diagnosed with cluster headaches. Some of my symptoms are cluster and some are not. I get nauseous, within 30 minutes to an hour I sneeze, then the attack. Maybe 2 to 3 hours later the nausea starts again and then the sneeze. This happens all day long. As soon as the nausea hits I know I'm going to sneeze and them the headache. When the headache hits it is severe and then it lets up for 15 minutes, and then it is severe again. I take Percocet for pain and that's the only thing that helps. We are working on getting oxygen therapy, but it's a slow process. I've tried all kinds of meds from different neurologists and nothing worked. I'm really curious if anyone has the nausea, sneeze and cluster thing. The other thing is that don't sound like cluster is the headache is on both sides on the temples. Going to try the vitamin d regimen and waiting on the oxygen. Quote Link to comment Share on other sites More sharing options...
spiny Posted January 12, 2018 Share Posted January 12, 2018 Have any of these 'doctors' done an MRI or other scan of your brain? It is done to rule out other stuff and should be at the top of the list. Both sides definitely does NOT sound like a CH. Do you have a pattern of times when you know you will get hit? Like 2am, 11am, 4pm, 8pm. That kind of thing. Or are they random in their timing? Are you seeking dark and quiet when you get hit or are you agitated? How long do your hits last? I have read of a few people getting nauseated, but not many. The sneeze, ah no. I don't remember reading that one. Generally speaking, narcotics including opiods do nothing for a CH. Zip. If you had not had a head scan, please push your doctor to do one. Quote Link to comment Share on other sites More sharing options...
lynn327 Posted January 12, 2018 Author Share Posted January 12, 2018 I had a Cat scan, MRI and MRA. Laying down makes my head hurt worse . I am agitated . They come on randomly. If I wake up in the middle of the night I sneeze and then the headache. This isn't a normal sneeze. It is different then my normal sneeze . It is a very forceful sneeze.I don't sleep much. The neurologist said the nausea, sneeze and headache are all connected , and seems to think it's clusters. I have a weepy eye, and runny nose. He said you can't treat one because it's all one thing. He has another patient with the sneeze. 1 Quote Link to comment Share on other sites More sharing options...
spiny Posted January 12, 2018 Share Posted January 12, 2018 Glad that they did scans. What medication did they put you on for your CH Lynn? Verap is the usual one tried first. Keep pushing if possible for your O2. That will be a life saver with the proper mask and method!! Quote Link to comment Share on other sites More sharing options...
lynn327 Posted January 13, 2018 Author Share Posted January 13, 2018 (edited) I had a Cat scan, MRI and MRA. Laying down makes my head hurt worse . I am agitated . They come on randomly. If I wake up in the middle of the night I sneeze and then the headache. This isn't a normal sneeze. It is different then my normal sneeze . It is a very forceful sneeze.I don't sleep much. The neurologist said the nausea, sneeze and headache are all connected , and seems to think it's clusters. I have a weepy eye, and runny nose. He said you can't treat one because it's all one thing. He has another patient with the sneeze. Let me start from the beginning. My name is Cody, I'm going by the name lynn, long story. I'm 27 year old single male. I lost my job, car and I feel like my life is over. I moved in with my grandmother cause I couldn't afford my app. The nausea, sneeze, and headaches started in Feb 2016. It went on for 2 month. I started taking melatonin and then stopped for ten days. What a relief, but Then they came back with a vengeance. In that 10 days I didn't have the nausea, sneezing or the headaches. So we knew they were all connected. I tried 2 different Neurologist and no one would listen when I told them what was happening. They would not connect all 3 things. I went online and saw there is something like a nauseous sneeze and everyone on that site blamed it on acid reflux. So I went to a Gastroenterologist. Nothing helped. Then I tried another approach. Allergist and ear nose and throat doctor to no avail. Finally I tried another Neurologist, and right away he said Cluster headaches. He also said don't try treating one of the symptoms, cause it is all connected. Finally someone knew what I was going through. He said he wants me on Oxygen therapy, but he didn't even know how to prescribe it. I am having a hard time getting him to write the right script for it. It is now going back and for the with the medical supply co and the doctor trying to get it right. He put me on Divalproex, Rizatriptan, and Ondansetron. It's been 3 weeks and nothing is helping. I want my life back and not in al this pain 5 times a day EVERYDAY Things that I forgot to mention in the above message. I'm new here so please forgive me . I failed to mention that when this cycle starts with the nausea and sneeze Bam I get hit with the headache immediately. Another thing I failed to mention is there are times when I sneeze I get a Charlie horse in the neck, that pulls my head over to my shoulder. the only way to relieve the cramp is to have someone pull on my head. When the cramp releases it sends my whole body into 5 or 6 spasm that go from my shoulders to my lower back. It's very painful. I've been to orthopedic doctors and I have herniated discs in the upper part of the spine, but I've had them long before the headaches started. I also have a hard knot in my shoulder that hurts even to the touch. After hearing all this the last neurologist still claims it is cluster headaches and says cluster headache can be more then one sided. I just don't know Edited January 13, 2018 by lynn327 adding information Quote Link to comment Share on other sites More sharing options...
spiny Posted January 13, 2018 Share Posted January 13, 2018 Wow. You have been thru a lot! Do not worry about being 'new'. We all were once. The sore knot on your shoulder sounds like a cluster knot. Many patients get them. Yes, they hurt like the devil too! If you are located in the states, the first med of choice is usually Verapamil. One of those meds that you increase the dose as you go until you get relief. O2 is the number one abortive. I am going to message a member who has access to a form to print out for your doctor. Hopefully he is available. Another med given is Prednisone. This is given for a short time until the Verap kicks in. I'll check back in a bit Cody. Hang in there. This condition is not the end of the world and it can be controlled. Quote Link to comment Share on other sites More sharing options...
lynn327 Posted January 13, 2018 Author Share Posted January 13, 2018 Quote I've tried the Prednisone to no avail! I had a Cat scan, MRI and MRA. Laying down makes my head hurt worse . I am agitated . They come on randomly. If I wake up in the middle of the night I sneeze and then the headache. This isn't a normal sneeze. It is different then my normal sneeze . It is a very forceful sneeze.I don't sleep much. The neurologist said the nausea, sneeze and headache are all connected , and seems to think it's clusters. I have a weepy eye, and runny nose. He said you can't treat one because it's all one thing. He has another patient with the sneeze. Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 13, 2018 Share Posted January 13, 2018 3 hours ago, lynn327 said: Finally someone knew what I was going through. He said he wants me on Oxygen therapy, but he didn't even know how to prescribe it. I am having a hard time getting him to write the right script for it. It is now going back and for the with the medical supply co and the doctor trying to get it right. A prescription will typically read something like "Oxygen therapy for cluster headache. 25 min at 15 L/min with non-rebreather mask." ("L/min" is liters per minute). A doctor might use some abbreviations ("NRB" for non-rebreather, for example) but I'm sure they're not necessary. If you could get him to write it for 25 L/min instead of 15 L/min, that would be great, but it would be pushing it. Quote Link to comment Share on other sites More sharing options...
lynn327 Posted January 17, 2018 Author Share Posted January 17, 2018 So today they delivered an oxygen concentrator.6-10 lpm for 15 minutes using a non- rebreather mask. Is this what I need ? I am new to this and have no idea what I should be using. Please advise. Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 17, 2018 Share Posted January 17, 2018 1 hour ago, lynn327 said: So today they delivered an oxygen concentrator.6-10 lpm for 15 minutes using a non- rebreather mask. Is this what I need ? Sorry -- NO, it isn't. You should try it, because it might work, or at least help. But in general that flow rate is much too low, and a concentrator doesn't generate pure enough O2. Plus, most concentrators are noisy. You want cylinders/tanks, with regulators. Lordy, this is frustrating. As I noted above, the prescription should have read 15 lpm. (Not frustrated with you, of course, just with this damn crazy system.) Are you sure it's a non-rebreather mask? Does it look more or less like this: https://justnebulizers.com/pediatric-or-adult-non-rebreathing-mask-case-of.html? It's not things you stick in your nose, right? If you have that mask, cover the little circle of round holes, if it doesn't have anything behind it, when you inhale. That's to keep room air from mixing with the O2. Cut the strap. Hold the mask firmly to your face with your hand. Drink a 5-Hour Energy or some strong coffee as you start on the O2. Inhale the oxygen as fully as you can, hold it for a moment, exhale fully, and inhale again. If you have to pause to wait for the bag to fill before you inhale again, your flow rate is too low. There are other breathing strategies you can use, but I'm just giving you the most straightforward one. Let us know how this goes. Quote Link to comment Share on other sites More sharing options...
lynn327 Posted January 17, 2018 Author Share Posted January 17, 2018 I tried to tell the man that delivered it that's not right , but he didn't seem to know anything about it, and acted like I didn't know what I was talking about. Yes this is very frustrating. I don't think the Neurologist that I went to, ever prescribed oxygen before. He did say it would help, but he didn't know how to write out the script for it. The medical eqipt co we went through had to go back and fourth 3 times before they got this, and now it's not right. I tried it and it doesn't do anything for the headache, except make me light headed. Quote Link to comment Share on other sites More sharing options...
lynn327 Posted January 17, 2018 Author Share Posted January 17, 2018 I wanted to mention something else. After the sneeze happens, BAM the hit, BUT I have 2 different types of headaches. Sometimes I have aura, that I can't see anything but bright lights. Then the other times Bam it hits and I don't have aura. The one without aura hits, and about 3 minutes later it gives me a break. The headache doesn't go away completely, but it lets up so that I can function. Then in 10 minutes or so it hits hard again. The one without aura, I can't think and have trouble finding words. I don't know I'm so confused with the whole thing. You say that Cluster headaches are on both sides and mine are at the temples and other times it's the whole head that hurts. I do have the weepy eye and runny nose. I'm really starting to question this Neurologist. My GP said he would write out the script for the oxygen, if need be, since the neurologist didn't know what he is doing, but will the ins except 2 different doctors giving 2 different scripts? Quote Link to comment Share on other sites More sharing options...
lynn327 Posted January 17, 2018 Author Share Posted January 17, 2018 This discussion board says to use the oxygen as soon as you feel the headache coming on. The only warning I have is the nausea that can last 1 hour before the sneeze. Since this is all connected should I start the oxygen when I get nauseous to see if it will prevent the sneeze and the hit? Another thing most people with cluster headaches say that Percocet doesn't help. That's my only relief. Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 17, 2018 Share Posted January 17, 2018 (edited) I have to admit that I'm completely confounded by your symptoms and the fact that Percocet helps. I'm not a doctor, and I have no idea what's going on. (CH attacks are almost always one-sided, and it's uncommon but not unheard of for them to be accompanied by an aura.) Regarding oxygen, you should be able to call the supplier who delivered this equipment to you and just ask for a large cylinder of oxygen, a regulator that goes up to at least 15 lpm, and a non-rebreather mask (if that's not what you received). I suppose a lot depends on what prescription the doctor wrote. The supplier might never have had a patient with CH. You can tell them that you'll send them some medical literature related to oxygen for CH. If they say they'll look at that, I can provide it to you. Of course, it concerns me that it made you light-headed. Many oxygen suppliers have a respiratory therapist on staff. That person might or might not know anything about CH. (There was a report a few years back in the medical literature about a person who had "paroxysmal" sneezing attacks after undergoing deep brain stimulation to treat CH, so I suppose that might suggest some relationship, but that's all I know about that.) Edited January 17, 2018 by CHfather Quote Link to comment Share on other sites More sharing options...
Roadie Posted January 18, 2018 Share Posted January 18, 2018 ...while we're on the subject of strange symptoms... I'm in a bout of shadows that, after nearly 7 months, still hasn't resulted in a CH attack serious enough to try and abort. (I've always felt that you shouldn't poke a sleeping dog, if you get what I mean, so I won't use sumatriptan unless I'm desperate.) Yesterday I experienced aura for about 30 mins in the morning. This was followed by a piercing headache on the non-CH side of my head that lasted a couple of hours. Bad, but not debilitating (and similar to migraine-type headaches that I get but that have almost vanished since this bout started). During this headache, my CH shadows completely disappeared. But once the headache had gone, my CH symptoms returned. Quote Link to comment Share on other sites More sharing options...
lynn327 Posted January 20, 2018 Author Share Posted January 20, 2018 Quote I am as dumbfounded as you. I can't find anything like it online to connect the symptoms I have. Lots of people have the nauseous sneeze, but not the headaches . Then there are the people that get migraines from sneezing, But to connect all of them. The neurologist didn't seem to think that it's unusual, and called it cluster head aches.I have an app in 2 weeks to see him. Some days are better then others and I only have 3 sneezes and then others are worse with 6 sneezes. When the nausea starts, I never know how long until I sneeze. Sometimes I vomit, but usually not. When I sneeze the nausea goes away instantly and the headache starts. I discovered a way to bring on the sneeze by pinching my nose, just so I don't feel sick to my stomach anymore, But the pain isn't any better then the nausea. If I take a Percocet without 15 to twenty minutes I'm feeling much better. But then it all starts over again. I'm so tired of feeling sick all the time. With the opioid thing going on right now, I don't know how long I can stay on the Percocet. Ok I've tried this oxygen for two days and it hasn't helped my cluster headache. It says to start the oxygen when you feel a headache coming on and not to wait till its full blown. The problem is I have no warning except the nausea and the sneeze. Once the I sneeze I have a full blown headache. I feel really light headed after using the oxygen. Is this normal? Is it because the flow rate isn't high enough ? Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 20, 2018 Share Posted January 20, 2018 Oh, boy . . . What I'm saying here is just what I know, or think I know. I suppose others might correct me. Percocet just doesn't work for CH. That's a given, though I suppose there are exceptions to every rule. It isn't really effective for migraine, either. No, it is not normal to feel light-headed after using O2. How abnormal it is, I don't know. I don't remember reading about it even once in the past 7 1/2 years, which would include at least 100 conversations with people using O2. Racer1_NC and Batch, among others, know far more about this than I do. You could PM them from the envelope symbol at the top right of the page. If you are hyperventilating, maybe -- but you'd know that. If anything, the low flow rate would seem to make it less likely that you'd have breathing-related issues. Are you having any trouble inhaling? If O2 doesn't work, it would seem to be another sign that you don't have CH, although this might not be a fair test (and, as you say, it's not clear even when you should start on the O2). There's a "symptom checker" at WebMD.com. I looked for sneezing, nausea, and headache. Didn't see anything there that really makes sense. Sorry . . . Quote Link to comment Share on other sites More sharing options...
xxx Posted January 21, 2018 Share Posted January 21, 2018 (edited) Lynn, I should have jumped into this discussion when you mentioned neck cramps. Muscle cramps anywhere in the body are a classic indication of a magnesium-calcium imbalance with too little magnesium. The enzymatic process of hydroxylating (metabolizing) vitamin D3 to its genetically active metabolite 1,25(OH)2D3 a.k.a., calcitriol, consumes magnesium rapidly. If we don't take at least 400 mg/day magnesium with vitamin D3, the problem of cramps becomes even more pronounced. I'm guessing your neck cramps are no longer a problem since starting the anti-inflammatory regimen... We have several CHers who also have migraine headaches and they report a confluence of symptoms similar to what you've described. Discuss that possibility with a neurologist or preferably a headache specialist when you see one. Regarding percocet... There have been enough studies done by the God Squad of cluster headache experts who are presently members of the ICHD3 Working group on trigeminal autonomic cephalalgias: doctors Goadsby, May and Rozen, that have proven opioids are ineffective in controlling cluster headache. While opioids may dull the pain, they have no effect on the cluster headache syndrome which continues unabated no matter how much opioid is taken... Moreover, continued frequent use of opioids like percocet in attempts to stop CH pain result in dependency >95% of the time leaving the CHer with two demons to fight... We've a few CHers who have done this and ended up dancing with the devil until they went through detox. The best, most effective and least invasive course of action is to see your PCP for the 25(OH)D lab test and to discuss the anti-inflammatory regimen. Take along a copy of this regimen from the following link. That way you'll both be singing from the same sheet music when the lab results come back. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Data from the online survey of CHers taking this regimen to prevent their CH indicate 82% experience ≥75% reduction in the frequency of their CH from an average of 3 CH/day down to 3 to 4 CH/week and that 64% of CHers starting this regimen experience a complete cessation of CH symptoms. These are year over year averages compiled since this survey was placed on line in December of 2011. Data from this survey from CHers reporting during 2016 indicate the overall favorable response has improved to 93% and the pain free response to 73%. It appears the two factors responsible for this improvement are starting this therapy with the 600,000 IU total vitamin D3 loading dose spread over 12 days at 50,000 IU/day or four weeks at 20,000 IU/day and the use of Benadryl (Diphenhydramine HCL) for a week to 10 days. Obviously, the favorable response comes much faster taking 50,000 IU/day for 12 days... Regarding the use of an oxygen concentrator to abort CH... While the concentration of oxygen produced by these systems is not 100% and the maximum flow rate is too low, an oxygen concentrator can work very effectively in aborting CH if used with the Redneck Oxygen Reservoir Breathing system (filled ahead of time) and a procedure calling for hyperventilation at forced vital capacity tidal volumes for 30 seconds with room air followed by inhaling a lungful of oxygen from the Redneck Oxygen Reservoir Breathing system and holding it for 30 second. 4 to 7 such complete cycles is usually sufficient to abort most CH. The "How To" for the DIY Redneck Oxygen Reservoir Breathing system and the hyperventilation breathing procedure can be found here at Clusterbusters... Use the search window and key in the words Redneck and Oxygen then look for a post by CHfather titled: Batch's hyperventilation + "red neck" bag" Take care and please keep us posted. V/R, Batch Edited January 21, 2018 by Batch Quote Link to comment Share on other sites More sharing options...
lynn327 Posted January 26, 2018 Author Share Posted January 26, 2018 Ok The oxygen supplier that brought us the concentrator came and picked it up and brought us tanks. 3 small tanks and one large emergency tank. When the small tanks get empty which is app 3 headaches each you hook it up to a machine to refill them. He called it a concentrator that takes the oxygen out of the room and then transfers it to the small tanks. Does this sound like what I need? He also told us that the highest this supplier as for flow rates goes is 15. I'm confused.The doctors script said 15/25 for 15 minutes. Quote Link to comment Share on other sites More sharing options...
lynn327 Posted January 27, 2018 Author Share Posted January 27, 2018 Ok The oxygen supplier that brought us the concentrator came and picked it up and brought us tanks. 3 small tanks and one large emergency tank. When the small tanks get empty which is app 3 headaches each you hook it up to a machine to refill them. He called it a concentrator that takes the oxygen out of the room and then transfers it to the small tanks. Does this sound like what I need? He also told us that the highest this supplier as for flow rates goes is 15. I'm confused.The doctors script said 15/25 for 15 minutes. Batch you are absolutely right, no more neck cramps. That problem solved. Now if I could just get rid of the nausea that causes the sneeze, then I would be good to go. I've tried so many different kinds of pills for nausea and nothing seems to work. Now that I've finally found a way to make myself sneeze (pepper) I can stop the nausea. Then the head is pounding. Doctor has me on 1250 mg of Depakote daily. Anyone else taking that for their headaches? He also gave me a nasal spray called Dihydroergotamine Mesylate. So far it is doing nothing but it will take time to see if it works. He says to call him in 2 weeks if it doesn't change for the better, and he will put me on Verapamil. One thing nice about this doctor,he is open to suggestions, so if I read something on here that has helped someone else he is willing try it. Quote Link to comment Share on other sites More sharing options...
spiny Posted January 27, 2018 Share Posted January 27, 2018 I think that you will find Verap. in the short acting form (take 3 times a day) more effective than Depakote. It is normally the first line of attack in the world of pharma as it works the best. It can require high doses to get you to PF status. Verap will lower your BP and you will need to watch that as you ramp it up if you change over. I would take mine not at meals three times a day, but when I was most prone to hits - afternoon, evening, and during the night. It worked better for me that way. Quote Link to comment Share on other sites More sharing options...
xxx Posted January 27, 2018 Share Posted January 27, 2018 Lynn, I'd give Benadryl (Diphenhydramine HCL) a try. A 25 mg tablet every 4 hours during the day for a few days should stop the nausea and possibly even the CH. How much vitamin D3 are you taking? Howz the head? What's the CH frequency? Take care and please keep us posted. V/R, Batch Quote Link to comment Share on other sites More sharing options...
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