Trucker Posted July 2, 2019 Share Posted July 2, 2019 Been dealing with these pretty much on my own for ten yrs, no insurance no help. Not even totally sure this is what I have but from what I’ve read nothing else seems to be right. The pain starts in my eye and moves into my upper teeth on the same side and then the left side of my head is in excruciating pain and my sinus congest on the same side. Most last 30 min but had one 5:30ish lasted 1.5 hrs. I’m averaging 3-4 a day, none at night though the in the last cycle I did. Attacks are between 10am-12pm 4pm-6pm and 10pm-12am. Would like to know more on the d3 regiment if someone wouldn’t mind walking me through it. Thank you in advance. Don’t know how much more I can take, been having bad thoughts during attacks. 1 Quote Link to comment Share on other sites More sharing options...
FunTimes Posted July 2, 2019 Share Posted July 2, 2019 Here is a link for the D3 a member on here named Batch came up with https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people You will want to go get your blood test to see what your vitamin D levels are now and then again about 3 months after you start taking all the vitamins to see what changes have occurred. After that you can tweak things as needed to help better. A lot of people on this site have gotten relief and poster results and different things they may have added, search D3 on the upper part of the page under your user name and you will find a tun of information. You can click on the envelope on the top of this page next to your user name and send Batch a message with any question you may have after reading up on this and I am sure he will get back to you Are you using anything else to abort your attacks? You can do it without insurance, plenty do, by setting up a welding oxygen setup. You will want to get oxygen as soon as you can it will change your life for sure. 2 Quote Link to comment Share on other sites More sharing options...
CHfather Posted July 2, 2019 Share Posted July 2, 2019 Trucker, FunTimes is right on. Read this, please. It's my best recitation of what I've picked up in ten years here. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Quote Link to comment Share on other sites More sharing options...
cathb357 Posted July 2, 2019 Share Posted July 2, 2019 Trucker, This is a good place to get some excellent information and learn you are not on your own. This community gives value by sharing their experiences, The good, bad, ugly. do's and dont's very valuable when negotiating CH. Read the "New Users-Read Here First" the link is at the top of the page (blue bar). There are good and caring people here with a common goal. PF or Pain Free. I am currently busting a cluster cycle, I am episodic and am getting better at being ready to push the beast back into the hole it crawled out of. Take your time here the wealth of information will change your life for the better! Look forward to Pain Free days ahead. Cath 4 Quote Link to comment Share on other sites More sharing options...
Trucker Posted July 3, 2019 Author Share Posted July 3, 2019 Thanks everyone. Was curious if most people have the same type of pains, the teeth aches and stuff nostril? Three different dentist said my teeth are fine but they don’t feel fine during an attack. Quote Link to comment Share on other sites More sharing options...
CHfather Posted July 3, 2019 Share Posted July 3, 2019 35 minutes ago, Trucker said: Thanks everyone. Was curious if most people have the same type of pains, the teeth aches and stuff nostril? Three different dentist said my teeth are fine but they don’t feel fine during an attack. Yes. In fact, you're lucky -- a lot of people have a lot of dental work, sinus surgeries, TMJ treatment, and other useless stuff done to them before they are accurately diagnosed. The nerve that is affected by CH covers a very large area of your face and head, and the pain tends to show up wherever the nerve goes. Quote Link to comment Share on other sites More sharing options...
FunTimes Posted July 3, 2019 Share Posted July 3, 2019 Trucker I entered this party thinking it was my teeth and had a root canal done for no reason. That didn't fix any of my pain and was told by a different dentist it was the clusters causing the pain. Things got a lot more fun after that. I feel it in my upper teeth to the point I want to snap them off at the root! It will linger for a little after the attack is over sometime too. Some people drink cold ice water with a straw pointing to the roof of their mouth during a cluster to try to create a brain freeze feeling, I have pressed Ice to the roof of my mouth and on my teeth but it did nothing but aggravate me. Quote Link to comment Share on other sites More sharing options...
jost Posted July 3, 2019 Share Posted July 3, 2019 tl;dr I'm brand new here. I am going through a wicked episode that typically happens every seven years and lasts about six weeks. Normally I have CH several times a year but for 3-4 days and can treat sufficiently. Right now I'm limping along stretching meds out and struggling. Does anyone have suggestions because I have been flying solo on these episodes for decades now and it gets pretty confusing. New here also. Very glad I found this by google search for cluster headache. I can echo the stories here for sure and the teeth pain description Trucker gave fits. Have had these headaches for decades in isolation pretty much. My grandfather, my dad and my sister had them but no one knew what they were or how to treat medically. Two of my nephews get them so I have to assume there is a genetic component. In 2007 I found a neurologist who knew exactly what I suffer from and gave a name to it other than sinus headache or migraine. The dental pain I understand because I had a really good old school dentist who did my orthodontics way back in the day and he gave a pretty definitive explanation after I had visited the neurologist. Right now I'm going through my worst episode in seven years which seems to be the pattern. I get CH each year once or maybe twice and treat with imitrex, pseudoephedrine, caffeine and ibuprofen or aspirin because right or wrong that is what I know and gives me relief. I'll get headaches like clockwork twice a day for two to three days three to four times a year and treat them and can function normally pushing the wicked back into its crevice. Then around every seven years I go through the whole cycle that lasts a minimum of six weeks or longer and it's very intense. That is where I am now. I'm very interested in cluster busting as described in the "New Users Read Here" info page. I have a history around meds that is a long story and I would like to find out more about this topic. I did the traditional thing of having my imitrex filled every month to get a supply when I really needed it. I lapsed in that and now my regular doctor and insurance is doing the usual "no more than nine a month" but fortunately my pharmacist filled this months early under a cash discount coupon. I'm struggling through with half doses at a time to keep things at bay at least. Quote Link to comment Share on other sites More sharing options...
Freud Posted July 4, 2019 Share Posted July 4, 2019 @jost it sounds like you’re using imitrex pills. In general 95-99% of us don’t get any kind of relief from oral sumatriptan. The injections are %1000 times better. Most insurances will cover 12 injections a month if they cover injectables. You ask your Dr to write for the 6mg auto injections and search you tube for splitting injections. You can get 2-3 doses out of each one. So you could get 24-36 doses per month. Most importantly oxygen is the number one abortive in my book. Frequent Imatrex use is reported to increase severity and amount of attacks. I save my injections for important days like family events or for the kip 10s (search the web for kip pain scale) that won’t break with the oxygen. You need high flow 100% oxygen at a min of 15-25LPM. So you go through it pretty fast depending on how many times a day you get hit and how long it takes for the oxygen to work. My CCH (chronic CLuster headaches) used to abort after 2-3 min of oxygen and I stay in for 10min total. To avoid a partial abort. These days for the kip 8-10s it can take 10-30min for them to break, but that’s still probably faster than the oral Imatrex. Btw the injections work in 5-10min. Look around, the search bar is your friend. If you want to know more about busting and have read the new user stuff make a post in the theory and implementation section. Or any where except the general/ public board i wish you luck, we’re here to help brian 2 Quote Link to comment Share on other sites More sharing options...
jost Posted July 4, 2019 Share Posted July 4, 2019 @Freud Wow. More info on here than I've found in years. Thanks for the helpful reply. I know the pills aren't very effective but they're the best I have. They're helpful if I'm episodic and catch it right before lightning strikes. My eye usually does the foreshadowing. I'm leery of rebound with sumatriptan and try to keep that in mind and the same with pseudoephedrine and caffeine but there it is. It is not a very good solution right now but except for nasal spray it's all I know. I need to explore how to get oxygen and a tank as I'm naive on how to do that as I'm reading a lot that it works. I'm squeamish about injecting myself but I could get over it. I had forgotten about nasal spray and am going to try to get that. Additionally I've never heard of a kip scale but researched it quickly before replying. I've been at 10 before but not in awhile and I would like to not escalate this episode beyond the 7-8 it's gotten to. I did find a sub on reddit that has some useful information. I'm open to trying anything. My family doctor recently has become overly cautious on everything not just this therefore not very useful on anything lately. I have another doctor I can contact for prescribing that I think will be helpful. Obviously I'm not very knowledgeable about resources and clearly need to figure it out fast because I do not want to get to the part where I'm writhing in pain. It's been a few years but I've been through it before and don't want to again. I'm not really up on terminology either which means I'm not very articulate. I'm feeling very out there trying to figure out how to fly this plane without crashing. Again thanks for your reply and I'm searching around on here to glean as much as I can. Quote Link to comment Share on other sites More sharing options...
CHfather Posted July 4, 2019 Share Posted July 4, 2019 Jost, there's a lot of information in this file about oxygen and other strategies: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ The vitamin D3 regimen is another thing that you really need to try. 2 Quote Link to comment Share on other sites More sharing options...
jost Posted July 4, 2019 Share Posted July 4, 2019 @CHfather Thanks for the reference. I'm going to get in touch with my doctor on Monday regarding oxygen. Over a couple of decades ago before I got a correct diagnosis my doctor at the time was out of town and I saw one he brought in. She gave me oxygen in the office and I had forgotten that. Quote Link to comment Share on other sites More sharing options...
Siegfried Posted July 8, 2019 Share Posted July 8, 2019 Ketogenic diet is something else you can look at. It seems to have a positive effect for people with CH who have tried it. Quote Link to comment Share on other sites More sharing options...
jost Posted July 8, 2019 Share Posted July 8, 2019 Interesting about diet and certain foods. I eat a very healthy diet but wonder if there is something specific that can trigger a CH at a certain time in a cycle. Quote Link to comment Share on other sites More sharing options...
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