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FunTimes

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Everything posted by FunTimes

  1. I have added benadryl to the rest of the D3 I take and that helps me in the sprint time with underlying allergies that I do not show any symptoms of having . 3 25mg a day and then at night I will take Melatonin to help with the ones that wake you up. This could maybe help knock one or 2 more hits off your list for the day. I can not remember if you can use the 5hr drinks but I will drink one of them as well for the harder hitting clusters that wake me up, they do not keep me awake at all. Like Jon siad.. get that oxygen, if the doc will not give you the script we have the welding setup we can help you with.
  2. Something to look into: https://clinicaltrials.gov/ct2/show/NCT02981173?cond=Cluster+Headache&cntry=US&draw=2&rank=6
  3. Another thing that may help when you are out and do not have your O2 is energy drinks like 5hr energy. I have also user Monster and Rockstar type energy drinks. I would see if your oxygen company can get you a smaller E size tank to keep with you in your car. Sounds like your on the ball with everything your have done so far. I would maybe add a journal to logg all your attacks, what you did to abort them and how long and painful they were? You can them look back to see what has helped to end the pain a little better then some other things.
  4. When calling around for oxygen make sure to ask for pricing with and without insurance. I was told it would be over $200 a month for up to 3 deliveries with my insurance. I told them I want to pay out of pocket and it went down to just under $100 a month. You will want more then one tank and even a few different sizes. E tanks are a good size to keep in your car and at work is you can. M60 tanks are about twice that size and are good for home use. a M60 tank is about twice the size of a M60 and is even better for home use but is a little heave to lug up stairs but is worth it is you can manage to get one. After you have your company set up and a few tanks we can help you with ways to grow your collection so you will be sure to have enough tanks to cover you when things get bad and you are using it a lot.
  5. As far as I know all you need is the prescription. That could come from either of the 2 doctors, then you can call around to local O2 suppliers and work out the rest with them. I would not get to hung up on the flow rate of the regulators they give you because most likely you will want to buy your own, same goes for the mask. I found it much easier to make the calls to the oxygen providers myself, tell them what I wanted and what I need the doctor to send them and them call the doctor and tell them what to write on the script. It is a pain in the ass and yes you are doing someone else job but that is the only way you will get what you need. here are links to the regulators and mask most of us use. If you are comfortable giving your general location im sure we have members on this site that may know of a good oxygen supplier that can deliver to your home. This regulator will work on E tanks https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1 This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
  6. Thats alot of info in just under 24 hours. As you can see you have found the best place to be with a lot of people willing to help as much as they can. I can only add some links to this for you to find the mask and oxygen regulators we all seem to use. Most people will get a E size tank and a M60 size tank, the larger M tank will take the same regulator as the M60. This regulator will work on E tanks https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1 This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
  7. I surf the web and bang my head sometimes.. Does that count?
  8. I add benadryl when the pollen in the air gets bad. I do not have any allergies that I know of, no runny nose or itchy eyes. I do get a feeling of a little more pressure in my cluster side and the benadryl kind of clears that out for me resulting in less attacks. I will take it for a few days to a week 3 times a day and then take a week off. I also take melatonin about an hour before I go to bed. This sometimes helps with clusters waking me up although I have had times that I am dreaming I am doing oxygen only to wake up to a killer cluster. We are so lucky to deal with this stuff.
  9. Doctor visit with MRI is a good place to start to rule out anything else. read as much as you can and ask questions. I am sure you will find much help here.
  10. This site was built off the idea of taking the alternative medications. You will want to look at pages in the members only portion of the site for all the information you might need on how, when and why. read up for a few days and ask a lot of questions. I am sure someone here will be more then happy to help you bring your clusters under control. Starting the D3 is a great start. you will want to read up on oxygen to use as an abortive. Energy drinks, ice, drinking cold water with a straw, and hot foot bath are some other things people use to help bring intensity down. You will learn more from this site then you will at most doctor offices.
  11. I did the Emgality thing for 4 months. 1st try was only 200mg and it cut my clusters just about in half that month. The next month dose was the full 300mg and it had no change on my monthly cluster count. same for the 3rd month. the 4th month of Emgality about 2 hours after my 3 shots to the stomach I started getting hit with a nice bout of clusters that lasted a few days. so I never went back to it. I am not saying it does not work, it just did not work out well for me. After that first dose I thought I was in good shape but like most other things I have tried in the past.. I am still here looking for solutions with the rest of us all. If you can get it I would say give it a try. Here is a link for the savings card. https://www.emgality.com/savings?utm_source=google&utm_medium=ppc&campaign=6506846331&adgroup=79794815964&ad=382852916392&utm_keyword=kwd-528836136696&utm_id=go_cmp-6506846331_adg-79794815964_ad-382852916392_kwd-528836136696_dev-c_ext-_prd-&gclid=EAIaIQobChMIj-aK1Ibj6QIVE9bACh3M0wEHEAAYAiAAEgLmI_D_BwE
  12. I do notice my cluster side nostril is much more sensitive then the non cluster side to the point that if I rub my nose sometimes it can trigger an attack. Try moving from the nasal cannula to a mask that covers your nose and mouth. A non rebreather type mask works best for most eliminating the outside air from mixing with your fresh oxygen.
  13. You will also want to read up on different ways of getting and using oxygen to help abort the attacks when they come. It may be hard to get the optimal oxygen setup now with everything that is going on but something to look into. I also have found that drinking a 5hr energy drink or any strong caffeinated drink fast at the onset of the attack can help keep it from reaching full strength. Good luck, read as much as you can and ask questions.
  14. Not much change, I went back on the D3 after 2 weeks of not taking anything. I was getting the same amount of hits but they were trending upward in length and severity a little. I did my bust over the weekend and had a bad day following witch is normal for me. I feel the LSD I took was a little weak so I will be on the lookout for a new batch of that. I have not yet tried the Zolmitriptan patch thing yet but need to do so soon as I have a appointment with them on Monday to go over how it worked. I just need to work up the courage, 20 minutes with nothing to abort other then the patch they gave me, It's going to be a great time if I have placebo!
  15. jon It is one patch per hit. you apply the patch to your arm when you feel the cluster coming one. They only gave me one for the study, could be the real thing could also be placebo. The way the study breaks it down for dosage is like this: They actually give you 2 patches and you will use both for one cluster attack 1.9mg consisting of one 1.9mg patch and 1 placebo patch 3.8mg consisting of two 1.9mg patches you have up to 48 weeks to treat one qualifying cluster attack after being accepted into the study and must report back tot he office within 4 or 5 days of your treatment. I have a doctors visit on the 24th so I am holding off to use mine until the weekend before. I am lucky enough to get hit every day so I can time it out like this. Saves me from taking another day off work for a doctors visit. Weather it works for me or not I am not even that interested in, I am not a big fan of any triptans, but if it can help someone else get through just one more day then it is worth giving it a try to be approved and moved to market. As far as the cost goes I figure the mor options on the market the more competition. I know that sumatriptan pills cost me around 20 bucks for a box of 9 and the injectables are 120 each shot. I figured a patch would maybe work much better then the pills do and not cost as much as the injections. I have no idea what it will end up costing in reality I just hope it gives another option for someone that can not afford the injections. Here is something I found on the study from migraine https://www.neurologyadvisor.com/conference-highlights/aan-2018-coverage/new-zolmitriptan-intracutaneous-system-safe-and-effective-for-migraine/
  16. New study for the Zolmitriptan microneedle system is now available for us lucky clusterheads. I do not see it on clinicaltrials.gov but I am enrolled in the Philadelphia area. Same old drug just a new way to administer. This is a small patch about the size of a quarter with a bunch of small needles on it that are coated with the medicine. Kind of feels like a cat tongue or shark skin. They give you one patch treatment to use at the first feeling of a cluster coming one and you have a few days to report back to the office. seems like a low risk trial if you have used any triptans in the past. Might just give someone another option when the injection triptans cost is out of reach. Something you may want to ask your PCP or headache specialist about.
  17. This regulator will work on E tanks https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1 This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
  18. Thank you all for the info. A little update, I am now on day 10 and still have not taken anything other then oxygen and a few 5hr drinks. I still feel better overall and the hits are just about the same. I am going to try a bust this weekend thinking that most of my system should be clean. I am due to take Emgality tomorrow but this I will hold off and see how the bust goes this weekend. If I were not keeping notes on every cluster I get I would think that they were a little worse then they really are but looking over the times kip level and duration everything seems to be just about the same now as it was 2 weeks ago.
  19. I am with Pebbles, I also never liked talking to or going to any doctors or dentist office in the past. I have found out that if you find the correct doctor and just talk to them like they are your neighbor you will realize that they are just like the rest of us. Just a person going to work every day doing what they like to do. You will be a challenge to any doctor you find and that will scare some off but keep looking. Ask around this site for recommendations we are all over the world and may know of a good place to start looking. what you are describing may or may not be the start of clusters. Mine started out thinking I had a toothache, we are all different You do need to see a doctor to get a proper diagnosis and make sure it is nothing more serious. Cluster suck and hurt like hell but will not kill you. Make sure you do not have anything else going on and move forward from that. If you do have clusters you will need a doc to prescribe you oxygen and some other things to get you pain free. Good luck
  20. Day 5 of 100% pill, med, vitamin and everything else free. Still feeling better then I was before I quit it all. I have gotten 1 or 2 hits a day that I do use oxygen on but over all I fell surprisingly good. Hope I get through the weekend, they are worse then weekdays due to relaxing I believe. I will continue to go without taking anything for a few more days then I need to decide if I am going to order Emgaility, I am due to take that next Friday.
  21. I have stopped taking all meds for 3 days now and do not notice any change in cluster behavior if anything it has gone down. I do realize that I still have some in my system and that the shit is bound to hit the fan sooner or later but as of rite now I feel good. I am not due for the next shots of Emgality until the 14th so I will see how I am feeling by then.
  22. Here is the link but I am sure Batch will be able to help you out soon. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people
  23. You can find the regulators and mask here This regulator will work on E tanks https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1 This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
  24. Welcome to the site Lilly. Perfect first post. I would look at your oxygen setup first. what size are the 2 tanks that you have and how fast does your regulator let out the o2? You will want to get as much oxygen into your system as fast as you can at the first feeling of a cluster coming on. This sometimes needs up to 25lpm regulator and a larger rebreather o2 mask. The symptoms you feel with stuffy/runny nose swolen eye, I tand to get them all too just not all at the same time and not the same thing every attack. One attack i might have a stuffy nose and get the feeling I am over heating the next one I might have a tearing eye and be cold. Sumatriptan injections work great in aborting your clusters but some believe the more you use them the more attacks you can get and they can make you feel groggy after you take them this is why the oxygen setup is so important. If you optimize your 02 setup you will cut down on the injections and feel much better. The Verapamil will take some time to make a difference and people usually take a larger dose up to 720mg a day of this but only your doctor can up that for you. Look around on this site and ask a tun of questions and you will find a lot of help here.
  25. CHfather- I am taking the verap 8 hours apart form the D3 and I do add Benadryl when things ramp up around the change of seasons and it does help. I still have not taken the lithium out of the bag. I think I will hold off on that and talk to another doctor, I go back in a month. I also signed up for another clinical trial so I can also ask them about it as well. The nerve block may be the way to go but with someone I feel better about doing it. Not that this doctor was not able to do it or didnt know what they were talking about I just did not get a good feeling about the way they carried themself. I am open to try anything and mix and match things, I did plenty of that during high school and made it out alive!. I just feel more confident with the people here then in a doctors office with someone I do not know truly knows what we are all dealing with. My Emgality experiment kind of stalled out. I went from 95 headaches the month prior to taking the first injections down to 45 the month after. I have taken the injections 2 more times since then and am holding at the mid 50's per month. I will give it a few more tries and call it quits on that one too. I have a feeling the first time I took it and it cut my attacks in half was just a coincidence. Thank you all for your advice and I am sorry if I wasted your time with my rant. What I think I need is a reset button and start treatments with a clean slate. I might have to may things going on at once and im screwing myself up with inturn messes with my thinking.
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