FunTimes
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Posts posted by FunTimes
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I use empty prescription bottles I have. I fill up as many days as I need to take with me and have kept them in my carryon bag and/or checked baggage. I have yet to be asked any questions. I only have flown in the US but have taken cruises wit no issues either.
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I have also put regulators on my go to list when people ask me what I want for birthday/Christmas or anything else. Also mix in a mask once a year. I keep "extra" in the car home and work.
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The last regulators I purchased a few years ago were here:
https://www.wtfarley.com/Oxygen-Standard-Body-Click-Regulator
https://www.wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540
I have no complaints. I did have one fail in the past and they did replace it for me.
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I will sometimes have leg cramps but I think the cause is to much caffeine. What helps me is Bananas (potassium) drinking lots of water and stretching on the floor (fake yoga). Not sure if this will help you with the pred cramps but it does help me.
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Not sure about TRT but I have read here that people had bad experiences with Cialis and Viagra type medications.
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No change in my clusters so far this week at all due to earth wind or fire. See you on the dark side of the moon!
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I gave it a go a few years back. The first month it seemed to help by the 3rd month things were back to normal with my clusters. I have heard both good and neutral results about it, we are all a little different. If you can get it for a reasonable price I would say to give it a try. I was taking 3x's the migraine dose, I think it was like 100mg? 3 shots once a month. Make sure they are room temp when you use them or it will hurt.
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I fish as much as I can, At the ocean and inland at local streams and lakes. I have not found any connection with fishing and clusters.
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Sorry.. I did correct that to say NOT block. Sometimes my brain and hands are not on the same page.
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@ChrisZ, The CBD oils will NOT block any busting that I am aware of.
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Who is planning on attending this year?
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Sorry to hear this but you should do a little more investigating. What things do you notice about your headaches? Same time every day? Same location? Anything trigger them like smells, foods or drink? Alcohol is a big trigger for most, can you drink a beer and not have your headache set in? What are you currently doing that successfully relives the pain your having? What type of doctor told you this and have you had a second opinion? If you do have Clusters the D3 and Oxygen are a great start to battling this and I would get on both as soon as you can! Poke around the site and ask as many questions as you have. Use the search bar at the top of the screen and if yo can think of it someone here has probably tried it and talked about it.
We are a good group of head bangers here and willing to help out, as a group or in some cases one on one, anyone who is trying to help themselves
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Here are links for regulators I have gotten, You can find them for a better price on amazon or used on ebay sometimes also
Larger M60 and M tanks use the CGA540
Oxygen Standard Body Click Regulator CGA 540 From WT Farley
Smaller E tanks use
https://www.wtfarley.com/Oxygen-Standard-Body-Click-Regulator
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Not sure what a "Normal" life is anymore. My new normal is to deal with things one day at a time and adjust. I know I am going to get beat down with a massive cluster at any time of any day so I am always ready to fight back with whatever I can. I keep oxygen in the car at all times, I have it in my office at work keep a triptan injection near by as much as I can and a 5hr energy drink in my pocket. I can no longer drink alcohol so my new norm in a social aspect is water and coffee. I am not shy or hiding my clusters so when someone who does not know what I deal with and comments about not drinking or avoiding some sort of smell I tell them how it is. I can no longer burn a candle, my wife can no longer ware perfumes and depending on how my clusters are on any given day I need to avoid other scented things like cooking dinner.
This is my normal life, not great but it is what I have so I embrace it and know things could always be worse. The new normal and I still love it.
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I would thing a business card type note or description as to what you ware going through and how others can best help would work best. Others here on the site have talked about this type thing in the past. I thought about putting a sign in my car for when I am huffing oxygen to keep the concerned citizen from knocking on the windows trying to help. You can not blame people and feel thankful that strangers that are willing to help others still exist in this world.
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In the winter time I sometimes can trigger myself breathing cold air in through my nose. Makes no sense because in the summer breathing in cold also helps abort a cluster.. AHHH, the life of a clusterhead!
Stuffy and or runny nose is also a common side effect of an attack
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Best of luck to you and hope that fixes the problem. If not we will still be hanging out here at the head bangin party for ya. Save your cup, we have free refills!
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9 hours ago, Billie Bea said:
thought it was a severe sinus thing, or maybe a tooth infection that had spread into the blood or bone.
This is so common, I had a maxillofacial surgeon tell me I had clusters after a root canal did nothing to help me.
You never know what type of doc your gonna get until you meet them for the first time. My doc not only knows clusters but also looks at and supports this site. You may luck out and get a clear diagnoses and find out its not clusters (that would be ideal) or you may end up having clusters(not so much fun) but at least you will know what path you will need to take.
Your above description sounds like clusters to me for sure, you also seem to have a somewhat upbeat attitude about this knowing the type of pain your having. Keep your head up and just take it one step at a time and we are all here to help answer any questions you may have.
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22 hours ago, Billie Bea said:
I have a list of a billion questions to ask
Ask here and ask at your appointment. I bet you we will have a better explained answer than the doctor.
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I have to fight with my oxygen company often as well. I keep calling and make my way up from call center to local manager and now I have the reginal managers number and we are on a first name basis.. Don't give up and call until you get what you need. I don't know your situation but I found that paying out of pocket in cheaper for me and also better for the oxygen company because they do not have to deal with the insurance approvals and things like that. I just pay my bill on time and that keeps them happy. Tank supplies at my distribution center get depleted and I have issues getting the M size tanks but getting to know the delivery driver and being kind to him went a long way with me building up a nice stash of "extra" tanks. A cold bottle of water, fresh veggies from the garden or a few bucks goes a long way with the delivery person!
Find a way to get someone on the phone that is willing to listen to you and work to get you the tanks you need. as long as they are getting paid for each tank what do they care how many you are using. The supermarket doesn't tell you you can not but 10 gallons of milk a week do they? They just want to sell it and make the profit!
Dont take no for an answer and move up the chain of command until you get it. I am not in your area so I do not have a suggestion for what company would be better for you sorry.
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You should find what you need on this site.
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I also get pain in the upper jaw below my eye like a tooth is being torn out. It will move around from my ear to upper and lower eye.
Welcome to the club.. Read up and ask as many questions as you can think of, We are all here to help each other and no matter what your feeling someone here has most likly dealt with it and may have a trick for you to make it just a little better.
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I did a clinical trial for this a few years ago with no major improvements. But that is not to say it will not work for you. If I remember correctly I was in the office for about an hour or two each time with the infusion lasting maybe 40 minutes?
Question about keeping a job with Cluster Headaches
in General Board
Posted
I feel I am lucky to have an employer that understands what I deal with. Maybe not 100% but they let me come and go as needed, keep oxygen tank in my office and work from home when needed. I am 100 % honest with them and they work with me. When shit hits the fan and I am in a bad cluster bout I work less, when things are good and I can I will make up he time I cut out when I could not make it a full day. I am chronic and get hit every day but the timing is still predictable but changes from day to night on occasion. I take the D3 regimen, oxygen, 5hr drinks and bust. Tweaking everything to find the best method for me. It still sucks and I still go into that dark place from time to time but it always works out in the end. If I did not have a understanding employer I do not know what I would do.
Maybe you could employ someone to work for you so you can be more "hands off" when things flare up? Adjust your schedule around your clusters and let people know what you are dealing with. It could be a good way to spread awareness? Try to think of ways to make this shit condition work in your favor?