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FunTimes

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Posts posted by FunTimes

  1. 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. 

  2. 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. 

  3. 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. 

  4. 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

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  5. 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. 

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  6. 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. 

  7. 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! 

  8. 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/

    • Thanks 1
  9. 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.

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  10. 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. 

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  11. 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  

  12. 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. 

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  13. 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. 

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  14. 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. 

    • Thanks 1
  15. 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. 

  16. 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?

  17. 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?  

  18. 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?

  19. 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? 

  20. 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. 

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