JJinNJ Posted January 2, 2019 Share Posted January 2, 2019 Hello everyone! This is my 1st post as I was recently diagnosed with CH's. I'm a 54yo Chiropractor, and in 25+ years of practice, I'm the 1st CH patient I have!! I see how everyone refers to it as the "beast"!. That's in my opinion, far too kind of a description! These things are the devil itself, pure evil! As far as the etiology of mine...there is no doubt that when I had oral surgery this past September (an apicoectomy) this was the trigger. After the usual post surgical pain, in the weeks following I began to have jaw/facial pain. 1 week before Thanksgiving, I developed a head/chest cold. I went to bed 1 night and that's when the Devil came knocking and he hasn't left since. I thought I was having a stroke when the 1st one came. Severe left red eye, eye drop, constricted pupil and pain that was none that I have ever felt. It hits me just about every night bet. 3-6 AM and lasts 50-60 minutes! Prednisone has given me some relief, but I know I can't stay on it. I will be starting the D3 regimen as well as MM. I refuse to (at this time anyway) to go the typical medical route. I just wanted to relay my story to people who can relate! I empathize with you all! It's only been 1 month for me, I can't even imagine going through this for years. There is also additional supplementation I am doing that I will go into later. I wish you all the best for a pain free New Year! Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted January 2, 2019 Share Posted January 2, 2019 Welcome to the community doc...sorry for your need to join us! I like your plan of attack but you didn't mention oxygen which is a game changer for clusterheads! Good luck with the D3 regimen and happy busting! Dallas Denny Quote Link to comment Share on other sites More sharing options...
JJinNJ Posted January 2, 2019 Author Share Posted January 2, 2019 Thanks for the welcome Dallas! I did forget to mention the O2, an unintended omission! I have yet to try it. For some reason my PCP thinks its difficult to procure. I'm sure I can get a Rx from someone I know! JJ Quote Link to comment Share on other sites More sharing options...
Freud Posted January 3, 2019 Share Posted January 3, 2019 Jj I live in Nj as well and I get my oxygen from Apria healthcare. My doc filled out one of their forms and it came ASAP. I now have 3 large M tanks. They deliver same day when you need refills. The drivers have all been familiar with CH and I can’t say enough good things about them. Quote Link to comment Share on other sites More sharing options...
JJinNJ Posted January 3, 2019 Author Share Posted January 3, 2019 Freud, Thanks for the info! I will tell my PCP. I have yet to read a lot of these posts, as I'm new here. One question I have is: Are there any success stories in this community as far as long term remissions and/or termination of this devil? Peace and Health to All! JJ Quote Link to comment Share on other sites More sharing options...
Freud Posted January 3, 2019 Share Posted January 3, 2019 Some people experience long remission periods but they have episodic CH. I happen to have chronic CH and don’t get breaks without mushrooms. I preventatively dose once a month to keep my CH under control. I’ve been dosing now for about 6 months. If I don’t preventatively dose I get about 2 months pain free from one dose of mm. You will most likely be episodic and experience a natural break. Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 3, 2019 Share Posted January 3, 2019 (edited) JJ', Without oxygen and without the other standard pharmaceutical abortives (triptans, usually injectable but sometimes the nasal spray works), you might try quickly drinking an energy shot, such as 5-Hour Energy, at the first sign of an attack. (Since you're getting hit during the night, you probably are waking up with them, so "first sign of an attack" in this case just means ASAP.) That reduces the severity of attacks for most people, and sometimes aborts them. Many people think that the colder the energy shot is, the better. For some people, particularly in their early stages of CH, a strong cup of coffee will work. Caffeine is the most important element, but some people think that other elements in energy shots/drinks, such as taurine, also help. You can also try drinking ice water through a straw aimed at the side of the roof of your mouth where the CH is; the objective here is to create "brain freeze." Standing in a bathtub of water that is as hot as you can stand might help. You can also forcefully inhale and exhale very cold air, from an air conditioning vent or just outside if it's very cold. Some people find that very vigorous exercise helps, particularly vigorous exercise in cold outside air. Some people say that CBD oil has been an effective abortive for them, and apparently DMT is, too, for some people (two entirely different things, which I put together just because of the initializations and because I think they are cannabis derivatives). Since we're covering all the bases, I'll add that a few people have said that vigorous sexual activity, including masturbation, will stop their attacks. Those suggestions are presented in roughly descending order of possible effectiveness (in my view). Benadryl helps a lot of people as a preventive. 25mg three times a day and 50mg at bedtime. Or what you can tolerate. It will make you groggy. Do not delay about getting oxygen. A standard prescription might read something like "Oxygen therapy for cluster headache. 15-25 minutes at 15 liters per minute with non-rebreather mask." (Docs use some abbreviations in there.) Let us know when you have the prescription. Usually a doc will fax it to a provider. Sounds like you might request Apria as the provider. You might check possible triggers in the file of that name in the ClusterBuster Files section. Start on a loading dose of D3 ASAP, along with the other supplements. Most people do not think that chiropractic or other bodywork helps. Some people find that it does help them, so ask around among your peers. Acupuncture has been effective for some people. It is said that there is a medication coming to the market fairly soon that might be an effective CH preventive. If there's any way that you can count yourself as "lucky," it's in having received a fast diagnosis. The average time to a correct diagnosis is 3-5 years, during which time many people continue suffering as well as having unnecessary surgeries, tooth extractions, and many other useless treatments, or are treated as though they are crazy. Edited January 3, 2019 by CHfather 2 Quote Link to comment Share on other sites More sharing options...
MoxieGirl Posted January 3, 2019 Share Posted January 3, 2019 Hi JJ, Welcome to the group, sorry you have to be here. Just for the record, Chiropractors totally rock! They crack a lot too. You may find you’ll need to educate your doctors on the best treatments for CH. You won’t be the first person in the medical world that has been treating people for years, and have never come across someone with CH. It’s rare and little understood. Part of me needed to go down the Dr route when I was first diagnosed. In hindsight, it was a waste of 3 years, until I found this group and started busting. But I had to exhaust all my options before I started experimenting on my own. If you can skip that, and are confident enough to try the methods we talk about here, you might be able to nip this in the bud relatively quickly. Not to imply it’ll be easy, or quick. But maybe months instead of years. My understanding is that on a scale of 1 - 10, where 10 is your worst ever cluster attack, heart attacks rank a 6 or 7. I don’t think I’ve heard of clusters being linked to post-dental work, but I’m not surprised by it. They are linked to the Trigeminal Nerve, which runs through the face and neck, and jaw. This is why they often attack in the eye, in the same place you get brain freeze from eating something cold. As you may know, when you eat something cold, the pain can refer up the Trigeminal and appear to be in your eye, when the source is actually in the roof of your mouth. If the surgery impacted this nerve, that could cause Trigeminal Neuralga or possibly Clusters. I’m not an expert, not even close, but I don’t think it’s a huge leap. Don’t hesitate to ask any questions. We are here to help, and start reading through the Clusterbuster Files section. It is loaded with good information. MG Quote Link to comment Share on other sites More sharing options...
JJinNJ Posted January 3, 2019 Author Share Posted January 3, 2019 Thanks for the tips CHfather, As soon as one hits (which is always when I'm sleeping) I make myself a cup of high octane coffee. I do take 2 benadryls before bed, and I do dose up with CBD 2x/day (sublingual oil). I also use Colloidal Silver nasal spray. I've found that if I can keep my left nostril clear, the severity is not as bad. I also dab peppermint oil just inside the nostril. I will try and breathe cold air next! Thank you too Moxie! I hope all is well with you on the other side of the pond! CH's were something I learned in school and continuing ed. but never treated. I've had great success treating migrainers. I'm pretty much dictating my treatment with my PCP. Once I finish this round of prednisone, I'll wait 5 days and try dosing with MM. I don't think I've hit a 10, but I average a 7-9 when hit hard. The shadow follows me all day! Thank you all for your input Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 3, 2019 Share Posted January 3, 2019 Ginger is considered very good for shadows. A strong tea made from sliced raw ginger is good. You can buy commercial ginger teas (if you're careful that you're getting real ginger), use ginger beer (non-alcoholic), or chew on ginger candies (again -- real ginger). Ginger People is a company that makes strong ginger candies. Some people have found that energy shots also help with shadows. I'd have that coffee ready in advance, and I'd seriously consider the energy shots as an alternative. Small as they are, there's more caffeine in them than what you're brewing, and you can get then down real fast. Something I have wondered about but have no definitive position on -- I would think that two Benadryl at night might induce a pretty deep sleep, leading perhaps to not awakening until an attack is farther underway than it would be if you hadn't taken the Benadryl. Quote Link to comment Share on other sites More sharing options...
xxx Posted January 3, 2019 Share Posted January 3, 2019 Hey JJ, Welcome to Clusterbusters. I've sent you a message so check your InBox by clicking the envelop icon at the top right corner of this page. As your PCP is willing to work with you, be sure to ask for the lab test of your serum 25(OH)D. You're likely vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your CH. Take care, V/R, Batch Quote Link to comment Share on other sites More sharing options...
JJinNJ Posted January 3, 2019 Author Share Posted January 3, 2019 Thanks Batch! I will keep in touch as I will start your program this weekend! There are some questions I will address with you privately through email! Thanks for your service and for YOUR service! CHfather, thanks for reminding me of the ginger tea! I used to make it anytime I felt like I was coming down with a bug! Last night was a bear! Awoken at 6am with a pretty good hit for 45 minutes. It seems as though for the past few days, the hits aren't as intense maybe a 5-6 as compared to a 7-9, but the shadows are a bit more bothersome. What's really getting me down is the intense fatigue from lack of quality sleep. Maybe I'll drop to 1 Benadryl tonight to see if it makes a difference! Thanks Guys Quote Link to comment Share on other sites More sharing options...
UpperCervicalChiroprator Posted January 5, 2019 Share Posted January 5, 2019 Since you are in the business, try looking for an upper cervical chiropractor that treats cluster headaches. Works for me. I am episodic 2 months of the year but since I started seeing an upper cervical chiropractor 3 years ago, I am able to skip my cluster periods with minimal discomfort at the beginning. Maybe I’m lucky but I figure it’s worth a try for anyone if there’s a chance. Quote Link to comment Share on other sites More sharing options...
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