Jump to content
ClusterBusters

FunTimes

Advanced Members
  • Content count

    582
  • Joined

  • Last visited

  • Days Won

    55

FunTimes last won the day on September 14

FunTimes had the most liked content!

Community Reputation

337 Excellent

2 Followers

About FunTimes

  • Rank
    Advanced Member

Profile Information

  • Gender
    Male
  • Location
    Delco

Recent Profile Visitors

1,536 profile views
  1. FunTimes

    Cluster head mask with bag

    The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
  2. FunTimes

    Emigality

    What is your current dose? It should be 300mg a month for clusters. I had 3 100mg shots when I was on it. I now have 3 unneeded sitting in a bag in my fridge. It did not help for me.
  3. FunTimes

    IMPORTANT CMS O2 SURVEY!!

    I did it on a PC with Chrome browser but I do not see my response posted on the form. It looked like everything worked fine on my end, I thought maybe it took a day to post.
  4. FunTimes

    Question about D3 + other

    Verapamil can help some. I was at one point taking a little over 900 mg a day with the slow release. I made the change over to the rapid release and worked my way down to 120 twice a day. You will want to have a doc keep an eye on your heart when changing dose and work up slowly. It will take about a week to get into your system so most will do a pred taper for the first week. When I was on the higher dose it effected the feeling in my feet along with a little swelling. If you are also using the D3 with all co factors you will want to space them apart a few hours, Verap is a calcium channel blocker so they would be fighting each other. They both work fine along with the triptans also.
  5. FunTimes

    My sister, I"m helpless

    Sorry you and your sister are dealing with this but you are in a good place for help. I see you have done all the ct, mri type scans to rule out anything else and that is a good start. The oxygen is the number one abort by most for cluster attacks. You will want the cluster mask and a regulator that has a flow rate that will go up to 15 or 20 lpm. you can read all about this. energy drinks or strong coffee are also used to help at the onset of an attack to help slow the ramp up time so you can get to the oxygen. Read up on the vitamine D3 regimen developed by a member on thie that goes by the name of XXX also known as Batch. Does she or has she tried Verapamil Sumatriptan or any other medications for this? Please read up as much as you can and ask a tun of questions you will get better help on this site then you will in any doctors office.
  6. FunTimes

    Post Attack Symptoms

    Definitely drained and in a fog for about 10 minutes or so and my eye will continue to tear up from time to time. Then I sit and think of what mean thing I have done to someone or something in the past that warranted that hit.
  7. FunTimes

    Fall is coming

    igdc I keep a log book of every cluster I get with how long and what I did to abort each one. It does help me because things change and what is working today may not work for me next week. I can go back and see what I did to get out of a funk the last time. I am chronic so I do not have any cycles that give me any length of pain free days but I do have cycles that ramp up from time to time. Spring time usually beats me up followed by summer when it is hot out around here.
  8. FunTimes

    Support Group

    Sign me up! do you want my social security number and mothers maiden or will the name of my first dog due? I am sorry, that is not nice but this does seem a little shady to come out of the gate requesting zoom or other video platforms that are easy to exploit. Poke around and tell us a little about yourself
  9. FunTimes

    Diagnosis

    Here is a link to the Emgality savings card you may be able to use to get it at no cost. I was able to use this along with my insurance and had 0 co pay. I hope it all works out for you, I am Chronic and did not have good luck with it but we are all different and if it has no real side effect why not give it a try. https://www.emgality.com/savings?utm_source=google&utm_medium=ppc&campaign=10500422360&adgroup=106595784409&ad=382852915174&utm_keyword=kwd-531753709621&utm_id=go_cmp-10500422360_adg-106595784409_ad-382852915174_kwd-531753709621_dev-c_ext-_prd-&gclid=EAIaIQobChMI2KyKq5LU6gIVg43ICh2FcQ8mEAAYASAAEgKFf_D_BwE
  10. FunTimes

    Diagnosis

    EggMan I have tried Emgality. The first time it took my cluster from 90 a month down to about 45, I am thinking that was just coincidence. the following 2 months it had no change on the amount of attacks I had although they did not co back up all that much either. The 4th time I took the shots all hell broke lose again and I gave them up. I am not saying it will not help you, we are all a little different. One thing I will say is make sure the shots are at room temp, they hurt like hell if they are cold, You keep them in the refrigerator for storage so pull them out a few hours before use.
  11. FunTimes

    Oxygen ROCKS

    Kat if your oxygen is being delivered to you you will want to be good friends with the delivery person. Most likely they do not know how many tanks you are supposed to have so when you place your order for 3 tanks and only leave 2 tanks out for the exchange 9 times out of 10 they will just take the 2 tanks and leave you 3. You can build your stash like this over time so you do not worry about running out over a long holiday weekend or anything. Just stay on top or your refills and build up your stock pile of tanks slowly. you will get the hang of how much O2 you will need per hit and be able to keep your supply well stocked for when things take a turn for the worst. A few extra tanks and regulators will save your ass one weekend and you will be so happy you were prepared. Your other option would to be just ask the supplier for more tanks but I have ever know that to work out very well. I am glad to hear you had success...
  12. FunTimes

    New Member -20 years of this- Pittsburgh

    If you can get the oxygen script from you doc and find a company to deliver it to you they will most likely not have the mask and regulator you will want to use. Just take what they give you and then go out and get your own supplies. You will want to ask for more then one tank and more then one size. M and M60 tanks are larger tanks that are good to keep at your home and hold a larger amount of O2, E tanks are smaller and good to keep in your can to take to and from work or just a day out on the road. You will want a regulator that has a flow rate up to 25 LPM and a cluster mask that has a large reservoir bag on it so you can get a deep lung full of only O2 and no outside air. I will attach links here so you can have a better idea of what people get. 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 ~OR~ wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
  13. FunTimes

    New Member -20 years of this- Pittsburgh

    Welcome to the party! Kind of sucks that you need to be here but it is a nice place. You will find all sorts of tricks and techniques to fight this cluster battle we are all in. As fat as busting goes you will want to look at the closed sections of the site (Share Your Busting Stories and Theory & Implementation) for members only. That will only be viewable to members of the site and more people will respond to your questions on busting. you should click on the blue banner on the top of this page for New Users. this will give you a overview of the basic information you will find here on busting. The biggest game changer in the Cluster world is Oxygen! you will want to read up on that, It can be a pain to get but well worth the effort. The D3 regimen is something you can start now and was developed by a long time member on this site who now goes by the screen name of XXX but is better know as Batch. you can read about it here https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people I am from the other side of PA, the better half just out side of Philly but I know we do have members from your area. Poke around and ask questions. we are all here to help each other.
  14. FunTimes

    First post here, and a more resilient cycle

    You will want to take the D3 a few hours away from your verapamil. I do Veap first thing in the morning when I wake up around 5AM, D3 at about 5PM and Verap again about 930pm.
  15. FunTimes

    First post here, and a more resilient cycle

    I have had times when it seems like the oxygen is not helping abort the attack totally and only helping when I am using it. Like CHfather mentioned using the 5hr drinks can sometimes give you that bump to put it over the edge just enough to kill the attack off for a few more hours. I am not sure how long you have been taking the Benadryl but I try to only take it for a week and then stop for at least another week. I feel as if it somehow builds in my system and become less effective, I have no idea if that is true or not. I was on the Verapamil 240ER 3 times a day at one point, changed over to the standard or fast release and dropped down to only taking 120 twice a day. I don't know if that would be better for you or not but something you may want to look into. As fat as more hits more often that is something that people see happen over time. Cluster change and sometimes it is for the worst. You will just need to ride it out, adjust your treatments and hope for the best. We all have tried many different things like different breathing techniques, hot or cold towels pressed on your face or neck, hot water to put feet into, ginger tea, drink cold water with a straw to hit the roof of your mouth. I am sure we have 100's more here and you may have read them all but like myself they slip the mind when all the pressure builds and the fun begins. Good luck with your move, we will be here when you are all settled in and are willing to help.
×