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FunTimes

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Everything posted by FunTimes

  1. 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.
  2. 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 the
  3. 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
  4. 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
  5. 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.
  6. 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
  7. 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 clust
  8. 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.
  9. 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.
  10. 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
  11. 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
  12. 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
  13. 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
  14. Anecdotal reports suggest that lithium can greatly potentiate the effects of LSD or mushrooms, and that it can produce very unpleasant feelings. An examination of a number of reports suggested that lithium can either increase or decrease effects. So would this mean it will work better? I am not afraid of tripping so increasing the effect would lead me to think it works better. The combination of lithium and tryptamines may even produce episodes that seem like, and that perhaps are, epileptic seizures. Is this on any dose of Lithium? What is the likelihood of this happeni
  15. Went to the Doc yesterday and was recommended Lithium and or a Occipital nerve block. Declined the block for now and took the script for the lithium. I know how to work the search feature on this page and have done a lot of reading about lithium and it seems like people try to stay away. I want to know if it has helped anyone. I read that you should not bust when on Lithium, What happens if you do? Has anyone had a bad experience? Yes it has side effects but are then any worse then the feeling of having you tooth pulled out of your head 3 times a day? I have played the Verapamil game, do the
  16. Edgar Welcome to the party! You will find all kinds of helpful info on this site. I am chronic so I do not come out of cycle but I do notice that if I am getting hit hard with 6 or 8 clusters a day I tend to have a constant pressure/weak pain behind my eye also. It feels like my eyeball itself is hard and a swelling feeling on my cluster side. I am no doctor so I can not say you do not have a tumor or anything like that but I do get that same feeling, Sometimes taking a benadryl will help take that feeling away. Are you on the D3 regimen? Do you use oxygen to abort your attack
  17. xBoss, sorry to see yo back 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
  18. FunTimes

    Emgality

    ddove I dont think the idea is to only use the Emgality, you should still use whatever abortive you have for your attacks. I have also started Emgality and still use oxygen to abort each cluster attack. The Emgality I hope will eventually reduce my clusters down to 0. I went from about 92 clusters the month before my first dose down to 43 the next month. Is it a fluke? coincidence? Nobody can ever tell but who cares, I will take it! My first dose was at 240 I just took the second at 300mg last friday. I still get hits but they are not lasting as long and the oxygen is all I need for the m
  19. Welcome J I am also from Philly area, just outside in Delco actually. I use Montgomery Medical for my 02 and they have worked ok for me so far. A few glitches but it all works out in the end. Feel free to reach out with any questions you may have. You will find much more information on this site then in any doctors office.
  20. The MRI and seeing a headache clinic are a good start. You will want to read up on this site for a few days and come up with your own plan. I would recommend getting oxygen as your abortive for your attacks. You can find a tun of information on this topic by searching it in the upper corner. You will need a script from the doc to get medical but you can also get a welding setup. You will need a higher flow rate then normal so you may need to buy your own regulator. You can down any type energy drink with caffeine and taurine in it like a 5hr drink or redbull. You will want to reach out to Batc
  21. 4 hours for this? man.. and I was hoping your book was going to be on Amazon for Christmas this year.
  22. FunTimes

    Hello!

    Oxygen is the first thing I would get my hands on. It seems to be the hardest thing to get but works the best. You will need to call and get your neurologist to give you a prescription for it and find a vendor to deliver it to your house. you will want to order your own regulator that will allow the flow rate to be at least 25lps. You can find them on Amazon, you will also want to get the cluster mask that is designed for lucky people like us who need to get as much O2 into our system as fast as we can. If you can not get your doctor to give you a script you can get your own welding setup. you
  23. Here is the link to the one that most use. http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
  24. Signals I pay for my 02 out of pocket, it was cheaper for me in the long run. My insurance company has a set price on how much a tank is but when I asked about paying for it on my own the price dropped about $250 bucks. I have a company that I found just outside of Philadelphia that I get tanks dropped off at my house the day after I call in my order. They started me off with 2 M60 and i think 4 E tanks, due to the lack of record keeping and the delivery driver being understanding/not caring I have a good stock pile of tanks now. Be ready for a fight, it took me more then a few months of
  25. Dilons20 I don't know how they will set you up but with my 02 company I do not own or pay a rental fee for my tanks. I have a deal that was originally set up for 2 m60 tanks and 4 E tanks to be refilled or (swapped out is more like it). I have ended up getting a few extra tanks over the last few years and kind of stock piled them. My 02 company does not know how many tanks I have and I am chronic so I have no plans on giving anything back to them. I would hold on to your tanks when you are out of cycle because it is hard enough to get what you need to start up why do that all over again o
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