Vipul
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Posts posted by Vipul
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Hello,
Been a smoker for the last 35 years. It's the only vice I have still not given up.
Is there any evidence to suggest that giving up on smoking would benifit a cluster headache sufferer?
Has anyone benefitted here on this forum from quitting smoking?
I used to be episodic but seem to have turned chronic. Have only had a couple of days off in the last 6 months.
Would love to know.
Lots of love.
Vipul
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Hello,
I keep an O2 tank in the car to use in case I get an attack when am out of the house. I got an attack today while traveling and immediately stopped to start on O2. I was shocked to see that there was very little O2 left In the tank even though it was a full tank when I kept it in the car 2 weeks ago. This has happened earlier as well.
Question is, can this happen in hot conditions where the O2 expands increasing the presure in the tank and leaking from the tank?
If this is true then I'll stop keeping the tank in the car for long.
Love and regards,
Vipul
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On 8/7/2022 at 4:07 AM, Bejeeber said:
Yes, thanks Vipul. Issues requiring hip surgery are commonly the only extended use pred side effect mentioned, but, from https://creakyjoints.org/living-with-arthritis/coronavirus/treatments/prednisone-steroids-immunosuppressing-coronavirus/:
Corticosteroids like prednisone have a laundry list of potential side effects, including high blood pressure; high blood sugar; glaucoma; issues with sleep, mood, and memory; weight gain; fluid retention and swelling; osteoporosis; and more.
Side effects tend to increase with higher doses and longer duration of use.
Another common side effect of corticosteroids like prednisone is increased risk of infections, including bacterial, fungal, and viral infections. This is particularly important to understand right now in light of the current COVID-19 crisis.
A May 2020 editorial in the Journal of Clinical Endocrinology & Metabolism cautioned that people who regularly take oral steroids should be considered higher risk for COVID-19 and may be more prone to developing complications.
Hi, been looking over the net and there are many articles suggesting cataract formation as a side effect of heavy usage of Prednisone besides many others. And to be honest, I did overuse them.
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Hello,
So an update to my post. I got my eye checked and they discovered I have cataract in my right eye. Thought it was a little early for this but got operated immediately. After the operation the doc mentioned that my cataract looked very different from all the others he had operated upon. He asked me if I had ever used steroids? Told him that I had used Predniselone for an extended period if time.
He concluded that my cataract was caused due to the Preniselone.
Checked on google and they say yes, you can develop cataract with Presniselone use.
Thought I'll update on the forum. I'll also change the subject.
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Hello,
I have noticed that the vision in my right eye has dropped over the last few years. This is the side where I get cluster pain.
A few months back I discovered that O2 is a life saver for me and since then I have only had to deal with mild pain when the attack starts. However for more than 3 years before that I was dealing with very severe pain regularly.
Question is, could all that pain have caused a drop in vision in the effected eye? I somehow feel so.
Love and best wishes to everyone.
Vipul Nair
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On 12/23/2021 at 7:05 PM, Shaun brearley said:
Vipul for shadows drop 2 ginger capsules every day
Hello, yes ginger works great. I make myself some stong ginger tea. I've noticed, a hot shower also does the job with shadows.
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On 12/7/2021 at 9:18 AM, jon019 said:
....now that's a good "problem" to have! similar success here with O2, which made the decision about when to use the last resort triptan harder. in my case had to use a combo of factors to know when. kinda depends on your cycles...mine 5-8 weeks on/off for yrs so knew just about where i was in most cycles (much harder when turned chronic, but cycles within that too). the worst hits (except for very last) were midcycle, always on high alert then. i knew only O2 needed for start and end of cycle hits. other factors: the faster a hit came on the more alert to a last resort screamer i had to be....and last but totally unexplainable, sometimes i could just tell...there was a certain "exquisiteness" of pain that was missing from most other hits. got pretty good at it and rarely missed....but always rueful since it meant being an "experienced" clusterhead.....which noone aspires to. may you continue to rapidly abort and not have to worry about "how bad" this one is gonna be
...thank you for your reports....somebody somewhere is sure to be helped reading your experiences....
Hi, what i realise after reading your message is that maybe my cycle was tapering down when I started the O2 and hence was able to abort quickly. Will need to be monitored over time.
So, my first 2 years the cycle was pretty much predictable. Would start in July/aug and dec/jan and would last 30 to 45 days. The 3rd year the cycle starts whenever. Have had 5 cycles and even when the cycle is over, I get these shadow type attacks on an and off.
Love and pain free wishes to you.
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Just now, Vipul said:
Thanks @Shaun brearleyand @CHfather thanks. am quite clear now. Maybe I was just getting too involved in the technical details. I've ordered a welding regulator from Amazon and hopefully it should work. Should receive it today.
Love
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10 hours ago, Shaun brearley said:
Rite I've just had a look round site for an answer but can't get a definitive one but from what I'm reading it's all guess work with the flow rate buddy . At the end of the day as long as the bag is full when your ready to inhale your next breath then all good. The outlet pressure is fine just adjust it to what is required as for the tubing your normal tubing should be good to go buddy .
Thanks @Shaun brearleyand @CHfather thanks. am quite clear now. Maybe I was just getting too involved in the technical details. I've ordered a welding regulator from Amazon and hopefully it should work. Should receive it today.
Love
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On 12/1/2021 at 9:56 PM, CHfather said:
This looks to me like a 540-type connection. I don't know whether it's the same classification system for regulators in India. Maybe @Racer1_NC or @xxx can confirm this. I see that www.indiamart.com has a lot of regulators. That's a business-to-business site (not business to consumer), so you might not be able to buy there, but there is contact information for all the suppliers. (There might be a better site where you could buy directly; this is just what I saw with a quick look.)
As the oxygen section says, you can use either a medical oxygen regulator or a welding regulator with that type of connection. Here's a medical O2 one that goes up to 25 lpm from Amazon in the US: https://www.amazon.com/Regulator-CGA-540-Responsive-Respiratory-120-1205/dp/B07ZS9JK7P/ref=sr_1_21?crid=292UW7S35X6N3&keywords=oxygen+regulator+540+cga&qid=1638375197&sprefix=oxygen+regulator+540%2Caps%2C216&sr=8-21
You can use almost any of the welding regs shown at Amazon -- search under oxygen regulator 540. You'd want to be sure to get one that has a barbed fitting to attach your mask tubing to, such as what you can see on the left side of this one: https://www.amazon.com/IMAGE-Welding-Welder-Regulator-Cutting/dp/B00JP9WIF2/ref=sr_1_10?crid=292UW7S35X6N3&keywords=oxygen+regulator+540+cga&qid=1638375197&sprefix=oxygen+regulator+540%2Caps%2C216&sr=8-10
I wouldn't rely on anything I say here until it's confirmed by Racer, xxx (Batch), or another of the true experts here.
Still trying to source tbe O2 regulator. As advised I am reviewing welding regulators as they are all able to give higher output. I still have a few questions.
1. The gauge on the welding regulators are in bar/ psi rather than lpm. So, I really wouldn't know what lpm I am on. Not really an issue.
2. All regulators I reviewed have a max inlet pressure mentioned as 100 bar. I believe all O2 cylinder has a pressure of 150 bar. Why is this so and is it ok to use?
3. The outlet pressure is 0 to 12 bar which I think is much more than I would need.
4. Does the welding regulator need a thicker O2 pipe or is it the same as medical regulator pipe?
5. Is a single stage regulator good enough or do j go for the two stage which controls the outlet flow.?
Request help to confirm the above. Attacked images of the regulator and specs.
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45 minutes ago, Shaun brearley said:
True about the so called specialists my friend .my Neuro would be a lot more happier if I wasn't his his list he has no interest. So at last meeting I told him he was a total asrehole and that I want a new Neuro. Don't lock yourself away buddy you can get portable 02 tanks with carry case that I take everywhere with me even when out of cycle just in case.
I will do just that. Will find myself a portable one. They are made of aluminium, or steel if I'm not wrong and are supposed to be lighter as well. How much O2 does the e tank hold? Found something similar here. Attaching a pic.
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8 hours ago, Shaun brearley said:
Vipul so glad you have found that the 02 works for you buddy . It defiantly makes life more bearable. It took me years for my Neuro to priscibe it for me . It will become your best friend for life my friend. . I told my missus the other day that if any1 tried to take it off me know I'd probably comit murder .
Thanks, my neuro didn't even prescribe it to me. In fact he laughed when I told him about the 15 lpm high flow oxygen. He said get one if those O2 cans if you want to try oxygen. It's very shocking how little even specialised neuros know about this disorder. Folks at clusterbusters know way more than any neurologist knows about cluster headaches.
I also cannot imagine life now without O2. In fact I haven't left home since I got on to it. I don't want to be far from my O2 when an attack starts. The cylinders I have are not very portable. They are about 4 ft tall and weights about 15 kg with an O2 capacity of 1500 ltrs. I plan to keep one in my car.
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5 hours ago, spiny said:
So happy for your positive results Vipul! So very nice not to know how bad it would be, no?
Thanks spiny.
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Hello,
Started using O2, 3 weeks back and it's great to be able to abort an attack before the pain becomes intense.
What I now notice is that because I abort the attacks immediately, I don't know if the attack was mild or severe. In other words I will not know if the cycle is tapering down till the attacks actually stop. Usually for me the pain level lowers as the cycle is coming to an end.
Now when my wife asks me if it was a bad one or mild one, I don't know what to say
I've been kicking myself for not having tried the O2 before. I didn't need to endure all that crazy pain that I did for the last 3 years. It was so severe that I planned to exit life on more than a few occasions.
Really grateful to all the wonderful people in this forum for being angels guiding people like me all the time.
love and pain free wishes to all.
Har Har Mahadev
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17 hours ago, Shaun brearley said:
Yes triptans can give you rebound attacks that are fair more painful plus can extent your cluster cycle buddy that's the reason I don't use them anymore
Noted, so I'll use them only when O2 is not accessible.
Thanks.
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On 12/2/2021 at 2:49 PM, Shaun brearley said:
As long as I hit the o2 before attack hits it's peak the o2 always aborts my attacks and I've been using o2 for about 5 years know. But I also use energy drinks of a night time before i hit the o2 and black coffee during the day before I hit the o2
So nice to hear that I may not have to bear that unbearable pain again. Have so far not tried energy drinks and coffee.
So basically the sumatriptan should only be used when O2 is not accessable I guess.
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10 hours ago, CHfather said:
This isn't clear to me. The bag (the smaller one that you had before) should fill up fairly quickly when you turn on the O2. Then when you inhale, the bag should empty, or at least mostly empty. Then it should fill up again when you stop inhaling and are exhaling. The flow rate determines how fast the bag fills -- the higher the lpm, the faster the bag fills. That is the only relevant aspect of flow rate -- it doesn't affect how much O2 you take in when you inhale. If the bag does not fill fast enough that it is ready for your next inhalation, you need a higher flow rate. It is called a "reservoir bag," because it holds the O2 until you inhale it. Having a larger bag on there means that you have extra O2 for each inhale, which is fine, but you want to start inhaling as soon as there's enough O2 for you to take a full, deep breath, and not wait for a very large bag to fill. I'm just not really comprehending what you mean by "even at 10 lpm I get enough oxygen for 10 to 15 breaths."
Hi, I'm sorry if I was not clear.
The original bag on my mask was very small and would fill up instantly at 15 lpm flow. However when I inhaled, the oxygen in the small bag would empty very quickly not giving me enough O2 for a full deep breath. So, I replaced the small bag with a bigger bag. I wait for it to fill up at 10 lpm. It takes about 20 to 30 seconds. Then I start to inhale deep emptying the bag maybe 50%. The bag continues to fill as I close the mouth piece with my thumb. As I exhale deep, the bag almost fills up again. Continuing to do this gets me a few deep full breaths at 10 lpm. When I see the bag start to empty, I may increase the lpm to 15. So basically, I am using a big reservoir bag and I start off with it full.
O2 virtually always works. For some people, it is less effective when the pressure in the tank is low (when there is less O2 in the tank). There might be times when it doesn't work, or takes longer to work, but the value of using O2 doesn't really decay over time. Yes, you will use less O2 when you find the breathing strategy that works best for you -- and there is also some evidence that it is just less effective in the first few uses than it becomes after that.
Super, that's great to hear. It has been a blessing for me. I was miserable few weeks ago. I am already using lesser O2 than when I started. All the advise, especially yours, on this forum is fantastic.
Thanks,
Vipul
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1 hour ago, Shaun brearley said:
My Lpm is only 15 and it works fine for my so don't panic if you can't find one at 25lpm buddy
Hello, 15 lpm is also working for me as of now. In fact even lower. I've replaced the small bag on the mask with a big bag. I start inhaling when it's full. So even at 10 lpm I get enough oxygen for 10 to 15 breaths.
In your experience does O2 always work to abort the attacks? Or does you get used to it with long term use? Do you use lesser oxygen as you learn to breath correctly?
thanks,
Vipul
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1 hour ago, CHfather said:
That one (the Flamenco brand) is a welding regulator. LPM is not an issue for welding, so the gauges don't show LPM and the product specifications wouldn't include it. The good thing is that you have a very wide range of lpm available to you from a welding regulator, the very small challenge is that you have to fiddle with the controls to find the lpm that works best for you (rather than just clicking an an lpm setting as you can do with a medical regulator. As I say, this is a very small issue that people quickly adjust to. The first link I provided in my post above is to a medical O2 regulator -- you can see that they look quite different. I think most of us would suggest that a welding regulator is the way to go -- as long as it fits onto your tank. That's not an issue in the US and many other other places, where both medical regulators for larger tanks and welding regulators for all tanks are CGA 540. I would assume the same would be true in India.
I hope you have read that oxygen section in that document I linked you to. Some tips there about strategies and mask preparation that might speed up your aborts.
Hi, yes I read the link and also saw the video on breathing techniques. Helps a lot.
Re the regulator, thanks for the info. I'll look for a welding regulator if that's better. Don't think the lpm reading matters much.
Thanks
Vipul
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10 hours ago, CHfather said:
This looks to me like a 540-type connection. I don't know whether it's the same classification system for regulators in India. Maybe @Racer1_NC or @xxx can confirm this. I see that www.indiamart.com has a lot of regulators. That's a business-to-business site (not business to consumer), so you might not be able to buy there, but there is contact information for all the suppliers. (There might be a better site where you could buy directly; this is just what I saw with a quick look.)
As the oxygen section says, you can use either a medical oxygen regulator or a welding regulator with that type of connection. Here's a medical O2 one that goes up to 25 lpm from Amazon in the US: https://www.amazon.com/Regulator-CGA-540-Responsive-Respiratory-120-1205/dp/B07ZS9JK7P/ref=sr_1_21?crid=292UW7S35X6N3&keywords=oxygen+regulator+540+cga&qid=1638375197&sprefix=oxygen+regulator+540%2Caps%2C216&sr=8-21
You can use almost any of the welding regs shown at Amazon -- search under oxygen regulator 540. You'd want to be sure to get one that has a barbed fitting to attach your mask tubing to, such as what you can see on the left side of this one: https://www.amazon.com/IMAGE-Welding-Welder-Regulator-Cutting/dp/B00JP9WIF2/ref=sr_1_10?crid=292UW7S35X6N3&keywords=oxygen+regulator+540+cga&qid=1638375197&sprefix=oxygen+regulator+540%2Caps%2C216&sr=8-10
I wouldn't rely on anything I say here until it's confirmed by Racer, xxx (Batch), or another of the true experts here.
Thanks so much for all the info. I think I first need to figure out for sure which reg I need
the one at Amazon looks nice. I can have someone bring it for me.
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9 hours ago, Racer1_NC said:
It appears to be the same....but I admit I can't say for 100% certain.
From the India Amazon pages: https://www.amazon.in/Flameco-Oxygen-Regulator-Single-Gauge/dp/B07NQHXPBV/ref=dp_fod_1?pd_rd_i=B07NQHXPBV&psc=1
There are more listed as being available in your country on Amazon India. Take a look there.....
Hello, I can see many on Amazon India but none that says 0 to 25 lpm. Most don't even specify the lpm and the ones that do, are 0 to 15. I'll look again. This one too does not specify lpm.
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8 hours ago, Shaun brearley said:
I've looked on Amazon India and their are plenty of regulators you can buy on the site buddy . You still haven't given me your ADDRESS for triptan injections , if you still want them?
Hello, I can see many on Amazon India but none that says 0 to 25 lpm. Most don't even specify the lpm and the ones that do, are 0 to 15. I'll look again.
Re the triptans, can't thank you enough buddy, my address is,
Vipul Nair, A48 (ff) Hauz Khas, New Delhi 110016, India.
Do let me know what I owe you and I'll find a way to send it.
God bless you brother.
Vipul
Har Har Mahadev
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20 minutes ago, CHfather said:
VERY happy that O2 is working for you!!!!!
If by 10L you mean 10 liters, the tanks must be bigger than that!
There are two basic kinds of regulators (at least in the US). What kind of regulator you get depends on how it connects to your tank. If your regulator looks like this, it is CGA-870.
If it looks like this, it is CGA-540.
If you have a CGA-540 connection, you can also use a welding O2 regulator. We could give you ideas for where to get any of these in regulators in the US (Amazon or EBay, for example), but will that help you there? Can you google and find them? As you suggest, if the 0-15 reg does its job when you remove the humidifier, you are probably okay with that. As shaun' says, most people don't need the humidifier. I would suggest that you read through the section on oxygen in this file for some thoughts that might be valuable: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
Thanks CHfather, they call them 10L tanks here as that is the water capacity. It holds 1500 litres of O2.
I think my regulator is CGA 870. Attaching pics for your reconfirmation.
I need to check if I can remove the humidifier from the regulator. If not, I'll get another one. Maybe import one from the US. Do you have a link?
Thanks and I'll read the section on oxygen.
Vipul
Har Har Mahadev
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53 minutes ago, Shaun brearley said:
You don't need the humidifier buddy . 15lmp regulator should do you . But if you can get 1 that goes up to 25lpm that would be even better
Thanks, any recommended regulator source?
Does giving up smoking help?
in General Board
Posted
Thanks for your inputs. And if it's not going to help, I'm not going to be tough on myself then:)
Love and regards
Vipul