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Demand valve and Oxygen breathing technique

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#1 Wed, 29/06/2022 - 17:29
venciso
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Last seen: 2 months 2 weeks ago
Joined: 29/06/2022 - 16:54

Demand valve and Oxygen breathing technique

Hi All,

I'm an episodic sufferer, first time was probably 12 years ago. My clusters come every 1.5-2 years and last for around a month. I have an hypothesis they are triggered by altitude but can't confirm 100%. 

I am currently in a cluster and I just got prescribed oxygen for the first time and it arrived today.

I have read on here that it is advised to get a demand valve for greater effectiveness. However, my supplier told me today they don't provide them. Is there a way my GP can get one from another source, how do I approach them about this?

In terms of using a non-rebreather mask. Do you have advice on breathing techniques? I'm new to all this so find breathing through the mask very unnatural. Am I supposed to breath in through the nose and breathe out through the mouth? Any tips are welcome.

I'm really hoping oxygen is effective for me. I've been using sumatriptan injections and they work very well but I'd rather not be dependent on them. 

Thank you all in advance.

 

Thu, 30/06/2022 - 21:57
Sonia
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Last seen: 2 months 3 weeks ago
Joined: 08/12/2021 - 16:07

Dear Fellow Cluster Headaches sufferer,

 

Having read your post, I write with some empathy and UK oxygen supply contact details, to share with your own GP and neurologist.

 

My own neurologist supplies oxygen with a demand valve for my cluster headaches using a nation wide UK homecare company called 

“Air Liquide Homecare” whose contact details are as follows:

 

Central UK Office telephone : 0808 143 9999

 

Central UK Office email : alhomecare.patientsupport@nhs.net

 

 

As background, I may confirm my chronic cluster headaches oxygen and verapamil prescription has utterly changed my life.  

 

This life change is in stark contrast to sleeping most of my life away exhausted, depressed, with bad thoughts and an average triple weekly cluster headache only lightly relieved with oramorph.

 

Following this new prescription,  my headache frequency remains, but without the ultimate peak “self-destructive” phase.  As a response to my new medication during good days, I am more able to do daily tasks including showering, washing dishes, walking my dogs and I even cooked a roast dinner last night, which tasted absolutely luxurious delicious.

 

However there are side effects, as I have a scar in my head.  My pulse rate has decreased by about 5bpm, which makes me feel a little drunk and unable to drive.  So if I have an important GP or hospital event, I don’t take the verapamil for 24 hours in advance of driving there.  The oxygen is amazing allowing me to sleep, while stay awake for longer the following day.

 

The side effect can also be managed and is only an issue as I am without family and living on my own being short of funds for taxi rides, as well as lacking the energy and confidence for a safe bus ride. 

 

In summary, I hope you may share this information with your own GP and neurologist with my wish for you to find your own chronic pain relief.

 

Sending lots of hugs and much hope,

 

Regards,

 

 

Sonia

--

Sonia Johal 

Fri, 01/07/2022 - 09:11
venciso
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Last seen: 2 months 2 weeks ago
Joined: 29/06/2022 - 16:54

Dear Sonia,

Thank you so much for your message. 

I'm very sorry to hear about your chronic headaches but glad that you have found a way to manage them and make you have good quality of life. I can't imagine what it would be like, stay strong! 

That's funny, the supplier my GP went through is actually Air Liquide. The delivery person told me they don't do demand valves but maybe they did not know that they are available. I will check back with my GP! 

I only have 2 days worth of experience with Oxygen but something that has happened is that I get more attacks now. The oxygen gets rid of them quickly but I was wondering if anyone else has experienced this. And, do they go back to normal after a while? 

First two nights I have had 3 attacks instead of the usual 1. 

Mon, 04/07/2022 - 10:33
venciso
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Last seen: 2 months 2 weeks ago
Joined: 29/06/2022 - 16:54

I have talked to my GP and they were told by Air Liquide that they don't supply the demand valve in London.

Has anybody had a similar experience? Seems strange for geography to be a factor in the decision.

Thanks!

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