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