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FunTimes

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Everything posted by FunTimes

  1. 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.
  2. 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.
  3. 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 happening and what would the outcome be? Trip to the ER? Permanent damage? I did not take the nerve block yesterday because I did not feel confident in the doctor I was talking to on this visit. I told this doctor that I do use LSD and Psilocybin and she said it would be ok with the Lithium. I know I have read bad things about it here so I said I will hold off for the nerve block until next visit. This was a new person filling in for the doctor I have seen in the past. I just dont know what I want to do if anything at this point. Having 2 hits a day is not all that bad, is this just the way it is going to be the rest of my life?
  4. 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 D3, bust with whatever I have on hand and still get hit every day. Yes it is only 1 or 2 times a day at the moment but it still blows. I am just tired of trying all kinds of stuff that might help or help a little for now. I will most likely take the lithium along with the verapamil d3 and bust on weekends regardless of what people say but I figured I would toss it out and see what others have to say. I know this is the life we as clusters live and it sucks. I am just in a mood to bitch today. Any advice or experiences?
  5. 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 attacks when you get them?
  6. 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 mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
  7. 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 most part. This may all change tomorrow but as of now it is doing the trick. Do you have any other abortive other then the injectables? Have you tried the vitamin D3, oxygen, verapamil, or any other types of tricks talked about on this site?
  8. 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.
  9. 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 Batch about the D3 but it is pretty straight forward in what vitamins you need to take and a blood test is recommended so you have an idea on your starting levels. You can read up on all the different busting options people have used in the past. Read and ask all the questions you have, you are in a good place for help
  10. 4 hours for this? man.. and I was hoping your book was going to be on Amazon for Christmas this year.
  11. 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 can find all kinds of information from the search box up top and we will help you out with anything you need. here are the links to the regulators. 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
  12. Here is the link to the one that most use. http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
  13. 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 yelling at and arguing with different 02 shops and vendors to get what I have now. As far as busing goes you can become a farmer and grow your own at home. This is not the portion of the board to talk about it but read up and sk questions and you will have a tun of help and support here.
  14. 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 on the next cycle. As far as I know oxygen does not go bad sitting in the tanks and you never know when the shit will hit the fan so it is better to have them then not.
  15. the pain will vary from one to another we all tolerate pain different so the fact that you do not think yours are as bad does not mean they are not clusters. Just hope that they never get that bad. After I started busting and got on the D3 my pain levels dropped and the length they last is shorter but they are still clusters and still fun to deal with.
  16. Batch

    It was nice to meet you in Dallas, My brother in law also enjoyed talking with you. 

    I have a quick question, I have moved to the Bio Tech D3 at 50,000. If you are taking that every other day do you still take the other co-factors the days you do not take the vitamin D? 

    Thanks 

    Don

    1. xxx

      xxx

      Don,

      Good question.  I've tapered the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 dose down to one capsule a week, an average vitamin D3 dose of 7,000 IU/day.  I take the rest of the cofactors daily.  I've found the Bio-Tech D3-50 water soluble vitamin D3 to be faster acting with a higher bioequivalence than the same dose of oil-based liquid softgel vitamin D3 formulations in terms of elevating serum 25(OH)D3.

      In simple terms, one Bio-Tech D3-50 a week has kept my 25(OH)D3 serum concentration steady at 150 ±4 ng/mL for the last 9 months measured with lab tests for 25(OH)D3 every 3 months.

      Hope this helps.

      Take care and please keep me posted.

      V/R, Batch

  17. Getting the head scans and tested is a good start to rule out anything else. Next doctors visit you have try to get a prescription for oxygen. You will need to use a non rebreather mask and a flow rate of up around 25lpm. You can search oxygen on this site and find a tun of information on it. I will also down a 5hr energy drink on my way to the oxygen to help abort the attack faster, some will use coffee or other energy drinks. The Vitamin D3 is another good thing that will not hurt starting today and will help with more then just cluster headaches. Read up on this site and ask a lot of questions and people on here will be more helpful then any doctors you will meet. Welcome to the site.
  18. FunTimes

    CBD

    A few people have used this in the past. If you search CBD in the upper right corner you will find the post with all the info they had to offer, no harm in reactivating a older post with new questions.
  19. I am chronic so I do not have normal cycles but I do have changes in my attacks. Last week I was doing great with only one cluster a day, Saturday hit and they started climbing and by Tuesday I was up to 5. The pain and length of each got worse each time. This is normal for me when the seasons start to change and yes it does suck but mine will hopefully settle down a bit. I take all of the D3 regimen and I add Benadryl 3 times a day when the seasons start to change and things ramp up for me. Not that this will help you feel any better but you are not alone. As far as your clusters changing sides, I have heard of this happen to other members on this board but it has never happened to me.
  20. Sorry,this is no longer available. Maybe someone else will see this post and will have something they can send you. If I come across another I will let you know.
  21. Welcome to the site! You will want to see a neurologist and or a headache specialist to have a few scans of your head done just to rule out anything major going on. Once you are declared a cluster head and given that id card you will have all the benefits of denied help from most of the doctors you will see. You are one of the lucky ones.. on a more serious note, click on the banner on the top of this page and read as much as you can on this site. Do not be afraid of asking a million questions! Oxygen is what you will want to get your hands on to abort your cluster attacks, this is the hardest thing to get doctors to prescribe to you (comment above). Read up on the vitamin D3 and Busting. Nobody has a cure for this lovely condition but we here all work together to make things as comfortable as we can. Some including myself will down a energy drink at the first twinge of a cluster coming on and this helps hold down the intensity a little so we can get to our oxygen. Keep a positive outlook and open mind and you will be just fine.. It is hard sometimes but people here are willing to listen and help get through the crappy times with you.
  22. A few things about the boost oxygen that stick out to me are it is 95% oxygen and that is lower then the medical grade witch may not be that big of a deal and only take longer to abort the attack. The bigger issue I see is that even the largest canister they have is only 10 liters of oxygen, I use E size tanks very often and even when my hits are not that bad I average about 4 aborts per tanks. A E tanks holds about 680 liters of oxygen so I use about 170 liters per attack. I did not see the pressure the boost can is at so I have no idea if the flow rate would be fast enough to support your breathing during a attack. Dont get me wrong, if I were stuck out on the road with nothing at all I would not turn this option down but I do not think I would spend to much time or energy stocking up on them when you can set up a welding tank and get much better results with a larger tank.
  23. This is still available. If you or anyone you know needs the smaller size cluster oxygen mask please let me know and I will send it to them. this is the mask with the yellow edges around the mask and it is brand new, never used.
  24. That is good that you now have a company that will supply you with oxygen. Now it is time to start playing the game with them to get more then the one tank. I have found that the person who delivers the tank it more sympathetic and will most likely hand you a extra tank from time to time. Start out trying to collect e tanks, they are smaller amd nice to keep in the car with you. You will want more then one tank so they do not need to come to your house as often for delivers. With only one tank you will need to plan well so you do not run out over a weekend and be stuck with no o2. As far as billing goes my local company is a flat monthly rate for up to 3 delivers so they do not charge per tank. I call and order tanks when I have a few empties and always add a extra. Most times I will use another tank before they deliver. Bottom line is get to know your delivery person and figure out how to work the system to your advantage. You do need this and they should not make it so hard. For me paying out of pocket was much cheaper then using insurance.
  25. I have a child size oxygen mask kit that needs a good home. If you are or know of someone who is in need of a brand new o2 mask kit for a child please let me know and I will send it to you. This is the opti mask kit that attaches to your regulator.
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