Pete M

Just wanted to thank you all for responding so quickly. Thank you also for the very helpful links that accompanied your replies. You have all provided me with some great tips and advice. I received my Cluster O2 Kit today and am feeling optimistic. I'm not sure whether I'll use the mask or the mouthpiece. Do I have to remove these devices when I exhale? Thanks again everyone

Hi everyone It's been a while since I posted. Finally got oxygen and am looking for feedback from those of you that are using it on a regular basis as a CH abortive. What flow rate should I use? What type of mask works best? Will oxygen still abort my attack if it takes me a while to get to my tank? How long, after the pain subsides, should I stay on the oxygen? Any tips or advice would be gratefully appreciated! Thanks Pete M

Sorry for your loss ClusterHeadSurvivor Happy you two found one another Sounds like you really meant a lot to each other RIP Buster

Hey AlexItalian I am getting incredible results from being on the D3 regimen. I strongly advise you to give it a try. Keep a headache diary and track your results. Let me know if it works for you too. Take care Pete M

Hey Donnie S Sorry you're still in pain. Have you tried the D3 regimen CHfather sent you the link to earlier in this thread? I strongly encourage you to try it. I am chronic and started getting results almost immediately! Take care

Hey Amphs I went back and read this thread from the start. I'll say again that I am not a doctor and that this is not a diagnosis. I do have some questions and comments for you. I am confused as to whether the headaches spread to your jaw OR is jaw pain a warning sign that you are about to have a headache. Can you clarify? You say that once your headache starts the pain comes in waves lasting anywhere from 1,1/2hrs - 4hrs. You also mentioned having pain spikes that last from 1 - 2 minutes during these episodes. This sounds more like Hemicrania Continua. HC responds really well to treatment with Indomethacin which, by the way, is ALSO used to treat sexual headaches. How many separate headaches/episode? How many episodes/day? Is there any pattern of these episodes occurring at/around the same time every day? For example I had a CH wake me up from deep sleep 4 days in a row at exactly 3:34am every time. You say you have no eye pain/tearing and no stuffed/runny nostril on your left side during your episodes. This tends to be much more common to CH than jaw pain. If you haven't already, check this site, clusterheadaches.com or the web for surveys/criteria for CH. I am not saying that you don't have CH. It's just that headache conditions like CH, SUNCT, PH,HC etc. are difficult to diagnose. In less than a year I was misdiagnosed by a neurologist and told by my doctor (who had little/no knowledge of CH or how to treat it) that he couldn't write me a prescription for oxygen. Just trying to help Take care

Hey Amphs Since this seems to be in the early stages my best advice to you is to start keeping a highly detailed headache journal. Keep track of: what time each episode occurs, location, level (1-10), duration of pain, sleep habits, diet changes etc. This will help the medical professionals have a clearer understanding of what your dealing with. I am keeping track using a calendar and one of the many FREE apps that are available online. Take care

Hey Amphs Sorry to hear you're in pain I am NOT a doctor and this is NOT a diagnosis First thing I'll say is that I had/have a reoccurring pilonidal cyst - between my butt cheeks. Before I had surgery to have it "cored out" I was literally blacking out from the pain just from walking. I think it still rears (pardon the pun) it's ugly head once in a while, but never gets serious, then goes away again. I would have to say that the pre-surgery cyst pain was on par with my worst cluster headaches. Restless behavior and being awakened from sleep can be a reaction to the pain caused by CH. Are you waking up to go to the bathroom then getting a head ache, or is the pain waking you up? You mention sensations of pain/stiffness in your jaw. I recommend consulting a dental professional regarding TMJ/TMD as this could be causing your pain. You should consult a medical professional regarding your sex headaches. Issues caused by these headaches can hang around for up to 6 months after an occurrence. Sex headaches can also be an indication of more serious underlying medical conditions that may be discovered through MRI's/CT's/MRA's etc. Take care and keep us posted

Hey didgens, tangerinearmy and MoxieGirl, I'm chronic and, despite busting, March was a bad month for me. I only had 7 pain free days all month. Sadly I also had several days where I had 2 attacks, and one day where I had 3 attacks. So I had a total of 34 attacks in March. I'm pretty sure the time change was a factor. On March 29th I started the D3 regiment and hope it will help make April a better month. Take care all

Thinking of you. Sending positive vibes your way. Wishing you a speedy and full recovery. Get well soon Fab

Recently had a bad allergy attack less than 24hrs after busting. Seemed to totally defeat the bust and also increased the number of attacks I experienced.

"From the outside looking in you can never understand and from the inside looking out you can never explain". Anonymous

Sending positive thoughts your way. Get well soon Fab!

Powerful stuff MoxieGirl! Very intense! So moving!

Hey emdub27 Sorry to hear that your wife is still suffering but glad that her pain intensity has been reduced. Thanks for keeping us up to date. I said it before, I'll say it again: I am not a doctor. I sincerely hope that something in that 'drug cocktail' will help your wife, and that the doctors will be able to discern which medication to attribute any positive results to. I think Pizotifen is a sandomigran brand name. I believe Methylprednisolone is in fact some type of prednisone. Definitely pursue the O2. I am still hoping that the indomethacin will work. I understand that it can take up to 2 weeks to see results. I think one of the members here named Whooligun had success with indo perhaps you could PM him and ask how long it took to get results. Take care

Really hope the indomethacin works. Keep us posted

Hi emdub27 1st: Please note that I am NOT a doctor 2nd: This is NOT a diagnosis I have done a fair amount of research about headaches and have a few questions and comments for you. Has your wife had an MRI? This is important to rule out other problems. At the start of your post you mention a continual headache. This sounds like Hemicrania Continua (HC). Pain for HC feels like 'jabs' or 'jolts'. Might feel like you have something(like dirt or an eyelash) in your eye. HC responds well to treatment with Indomethacin. 10 or more attacks/day sounds more like SUNCT or Paroxysmal Hemicrania (PH). How long do your wife's attacks last? CH attacks are approx. 15-180 minutes in duration. *More common in men, with a 6:1 male to female ratio. Accompanied by restlessness, pacing and other signs of agitation. Awakened from sleep.* SUNCT attacks are approx. 5-240 seconds in duration. *Up to 200 attacks/day.* PH attacks are approx. 2-30 minutes in duration. *Occurs more often in women. Not likely to feel restless or awaken from sleep.* Hope this helps Best wishes

Yeah didgens, saw this on twitter as well. Great news for sure!

Still not sure if quitting my 35 year 1 to 2 joint a day habit was a mistake. My cluster headaches started around the same time that I gave up pot. Since that time (mid November 2013) the longest I have gone without a CH is 10 days. I wonder if my long term habit was masking my CH as the only real head pain I used to get was self inflicted hangovers. As for incorrect diagnosis: Had some major dental work done shortly after giving up pot. Started getting nasty headaches and told my dental surgeon and he said "You have Trigeminal Neuralgia". Then someone else in his office said "You need a root canal". Had the root canal and still got headaches so they sent me to my doctor to get a neurologist appointment for same diagnosis of Trigeminal Neuralgia. The neurologist said "You have Trigeminal Autonomic Cephalagias (TAC's) here is a prescription for Lamotrigine" (a very powerful medication that can cause seizures) Not knowing what TAC's were I went home and researched them. I discovered that there are 4 types of TAC's and that the one TAC the best explained my symptoms was CH. Further research showed that Lamotrigine was successful in treating 2 types of TAC's, but not for CH. Rather than fill the prescription I went back to see him to tell him that my symptoms pointed to CH. The neurologist would not reconsider his original diagnosis and had the nerve to say to me "You must have a really high tolerance for pain because if you truly had CH you would have been so desperate that you would have taken the pills I prescribed you". I went back to my family doctor to arrange an appointment to see a different neurologist and to ask him for a prescription for Oxygen. He said "You would have to prove (as required by Canadian law) that your body is O2 deficient in order to be approved and you are not, so you won't qualify. I later found out (after I left that appointment I called an oxygen supplier) that he could give me a prescription but that I would have to tell him how to write it up so I could get the correct set up. My doctor did take a look at all the research papers, regarding CH, that I brought along and wrote me a prescription for Verapamil. My research on this shows that the dose is too low (also slow release) to be effective so I decided to hold off on the Verapamil and see what busting will do for me. My point to all of this is to confirm that even the "experts" aren't very knowledgeable when it comes to CH. I also agree with 'spiny' that we need to advocate for ourselves these days.

MG et al, This demon that we refer to as CH tries its best to rob us of all the things we treasure in life: our family, our friends, our jobs, our health, our happiness and our sanity. While this frustrates me to no end, I, like you, am determined not to let this demon rule my life. That is why I am so happy to have found all of you. Your empathy, knowledge and counsel gives me strength and hope! As the saying goes "there is strength in numbers". I believe that together we are more powerful than the demon!

Fantastic! To see credible media sources espouse the merits of psilocybin gives me hope for a future where narrow minded thinking will become a thing of the past!

Wow! I found this presentation to be totally fascinating and incredibly informative! Thanks for posting this tangerinearmy Knowledge is power!

I was more than happy to fill out the questionnaire. I hope that new members will do so as well. Together we can beat this. Knowledge is power!

Wow, small world. I actually saw your You Tube video a while back. I live about a 2hr drive from London, ON. Thanks for getting CH some exposure to the public via the media. Knowledge is power!