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Help in getting OXYGEN prescribed (Read 42982 times)
ir0ck
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Re: Help in getting OXYGEN prescribed
Reply #75 - Jan 16th, 2015 at 11:17pm
 
Recently moved from Florida where prescription was not needed.

Now my 02 supply ran out and my neurologist refuses to give me a prescription and I am in serious shyt.

Im to the point of taking a road trip to Florida to get my tank refilled. Anyone know of any other states that do not require prescription on the east coast?
Thanks in advance
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Mike NZ
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Re: Help in getting OXYGEN prescribed
Reply #76 - Jan 17th, 2015 at 12:16am
 
Some people use welding oxygen instead of medical oxygen.
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Batch
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Re: Help in getting OXYGEN prescribed
Reply #77 - Jan 17th, 2015 at 2:15am
 
Ir0ck,

If you've a reasonably current diagnosis of cluster headache in your medical records and your present neurologist refuses to prescribe oxygen therapy, print out a copy of the following link and take it to him with a promise of malpractice suit if he fails to give you an Rx for oxygen therapy for your cluster headache.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

As you'll see, oxygen therapy is the first abortive of choice with a Level A rating in medical evidence as an abortive for cluster headache.

In the mean time check out the following links.  You're very likely vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your CH.


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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Take care,

V/R, Batch

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ir0ck
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Re: Help in getting OXYGEN prescribed
Reply #78 - Jan 17th, 2015 at 9:01am
 
Batch, Thanks for the reply and the link. I will email my doc the following link.

I started your d3 regimen about 3 years ago and it was a real life savor for me. However, this time I am about 3 weeks in and it seems to not be helping.

What has worked for me the last 3 years to this point is 15,000 ui of D3 per day with lemonade, fish oil, calcium, magnesium. I possibly missed the k2 and zinc so so I am going to start that right away. Recently I started taking 5,000 mcg of B12 per day and within the last few days I stopped taking them because I thought it might not be helping my condition.

I go back to see my doc on feb 7th but time is my enemy here. This is affecting my work and my life and the pain is so horrible I am ready to take the trip to Florida today to get my o2. Unless I can find a state closer.

I will be following your advice here but in the meantime I am in serious need of o2.

thanks for all your help

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ir0ck
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Re: Help in getting OXYGEN prescribed
Reply #79 - Jan 17th, 2015 at 9:09am
 
Mike NZ wrote on Jan 17th, 2015 at 12:16am:
Some people use welding oxygen instead of medical oxygen.


Thanks for this. Do you know if they will require different cylinders or will I need a different kind? and in the case they require a welders cylinder will I need new regulators?
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« Last Edit: Jan 17th, 2015 at 9:13am by ir0ck »  
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Mike NZ
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Re: Help in getting OXYGEN prescribed
Reply #80 - Jan 17th, 2015 at 9:49am
 
ir0ck wrote on Jan 17th, 2015 at 9:09am:
Mike NZ wrote on Jan 17th, 2015 at 12:16am:
Some people use welding oxygen instead of medical oxygen.


Thanks for this. Do you know if they will require different cylinders or will I need a different kind? and in the case they require a welders cylinder will I need new regulators?


I've only ever used medical oxygen here in NZ or Australia.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register - this has a load of info about oxygen.

Also use the Google site search (top left of the page) and look up "welding oxygen" for a load of info.
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RDAtl
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Re: Help in getting OXYGEN prescribed
Reply #81 - Mar 6th, 2015 at 10:31pm
 
Hello all-  Im having a hard time finding the right regulator for my tank, I have the DISS or M ?type conncection, but the ones Ive seen on  Ebay dont look like they come with the coupling I need to connect it.  Anyone can direct me?  Thank you.
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Batch
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Re: Help in getting OXYGEN prescribed
Reply #82 - Mar 7th, 2015 at 7:42am
 
Hey RDAtl,

I think you'll find answers to most if not all your questions in the yellow tab titled "oxygen info" at the left of this screen.

If you've still got questions, shoot me a pm.

Take care,

V/R, Batch
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Emma marie h
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Re: Help in getting OXYGEN prescribed
Reply #83 - Sep 24th, 2015 at 6:51pm
 
Hi everyone,My name is Emma,I'm from Ireland. I'm new to the website,this is my first post.Sorry I know I should be writing this in a different section its just I was hoping someone here might know how to get o2 prescribed in Ireland. Ive had ch(episodic)  15years just recently being diagnosed last month after years of being told migraine,sinsus,bruxism etc Roll Eyes. I found this website and have been practically stalking it ever since. Finally knowing what is happening to me is such a relief but terrifying at the same time. I thank god I found this website,just reading everyones stories has helped.Its comforting to know your not alone. My doctor has been great,although the meds (amitriptyline) have not worked for me yet.He also gave me sumatripton nasal sprays,they work but only if I use them at the first sign of an attack but at my appointment last week he said its not ok that Im using the sprays twice a day,I asked about o2 and he just dismissed it.He did however arrange an app with a specialist in the hospital for me,its in 4 days so hopefully I will have some luck then. I'd be grateful for any advice ye might have.I am 53 days in now,longest ever.Thanks Smiley x
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Batch
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Re: Help in getting OXYGEN prescribed
Reply #84 - Sep 24th, 2015 at 7:06pm
 
Hey Emma Marie,

Welcome to CH.com.  You've come to the right place.  We know what you're going through and the good news is it doesn't need to be that way.

You need to contact OUCH(uk) Helpline at 01646 651 979, explain your situation and that you need help in obtaining home oxygen therapy.  They know the ropes, tricks and procedures to obtain home oxygen therapy from your NHS so will point you in the right direction.

You'll also need to fill out the attached HOOF and have your PCP sign it.

I'd also suggest you check out the following link for the anti-inflammatory regimen with 10,000 IU/day vitamin D3.  This regimen is very effective in preventing CH for over 80% of the CH'ers who start it.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

The "How To" part in starting this regimen is half way down the first page so scroll down... 

We have CH'ers in Ireland presently taking this regimen to prevent their CH...  Perhaps I can get one of them to get in touch with you as they have figured out how to obtain the needed supplements.  I'll shoot you a PM with some additional information that may be helpful.

Take care and please keep us posted.

V/R, Batch
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Emma marie h
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Re: Help in getting OXYGEN prescribed
Reply #85 - Sep 24th, 2015 at 7:17pm
 
Hi Batch,Thanks for the advice  Smiley I didnt realise OUCH would help me,( Im in republic of Ireland) Its def worth a try Smiley I have read nearly the entire link on 123 days pain free,I went and bought all the sup,except the vit k,there really expensive,one month supply of the supp cost me over 80euro so ya it would be great to hear from another Irish person about where their buying theirs Smiley Smileythank you SmileyI plan to start the regime Monday after my app.Im going to try get the vit D test done before I start.Thank you again Batch  Smiley
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Mike NZ
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Re: Help in getting OXYGEN prescribed
Reply #86 - Sep 24th, 2015 at 8:57pm
 
Hi Emma

The OUCH UK helpline should be able to help as Google can find where someone from the Irish Republic has had call backs from the helpline.

There are also some other people with CH here on the forums. I'm hoping you'll get a response from someone local who will be able to give you info on what works in Ireland.

Some of the D3 items can be expensive, but a lot of people from around the world have sourced them online and imported them, saving a lot of money in the process, with iherb.com being a commonly used site.

Amitriptyline can work as a CH preventive. It was the first one I used, although it is often not as effective as some of the others, like verapamil.

Do push all you can to get oxygen. It is amazingly good at killing off CHs. Read up about how we use it at - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Keep reading all you can here so you can learn as much about CH as possible. This will help a lot when you see a specialist in 4 days (lucky to get in so quick).



Batch - the NHS doesn't operate in the Republic of Ireland, only in England, Scotland, Wales and Northern Ireland. So the bit about a HOOF form won't apply there.



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thierry
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Re: Help in getting OXYGEN prescribed
Reply #87 - Sep 25th, 2015 at 4:17am
 
Hi Emma, just posting a quick note here for now as i'm about to go out the door.
I'm in Galway, i'll be in touch with you later today.
There are ways of getting the D3 regimen for a lot less than €80/month.
You've come to the right place, clusterheadaches.com and it's users/posters are a god send.
The D3 regimen has helped/is helping a lot of people, including me.
Hope you have a good day.  Smiley
All the best
Thierry
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thierry
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Re: Help in getting OXYGEN prescribed
Reply #88 - Sep 25th, 2015 at 12:05pm
 
Hi Emma, I got the neurologist in UHGalway to prescribe the o2 to me. When I asked him for it, he said that he had to find out if i could get it with my medical card, he also wanted to further research the efficacy of O2 before he would prescribe it. A couple of days later i received a phone call from a guy that was on his way to deliver a couple of O2 tanks to me, I also asked that guy to provide me with a couple of non-rebreather masks, which he duely did. I was delighted that it came very quickly. Maybe you can find an understanding neurologist in your local hospital and ask for O2, if he/she knows about CH, they should prescribe it for you. I am not sure as to how it is covered by a health insurance or not, nor do i know what it costs if you are going to have to pay for it all yourself.
O2 is great for abborting an attack, the earlier you get the mask on, the quicker the relief will be. If the pain is already quite high when you strat inhaling the O2, it can take 5 to 10 minutes to start feeling relief.
There are times when i had an O2 bottle constantly by the bed, and it has aborted many attacks.
As regards chatting about the D3 regimen and where to get the components for less, i suggest that we do that on another thread as this one has an O2 topic.
We could talk about the D3 regimen in the "123 days pain free...." thread if that suits you.
All the best
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« Last Edit: Sep 27th, 2015 at 10:44am by thierry »  
 
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Peter510
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Re: Help in getting OXYGEN prescribed
Reply #89 - Sep 25th, 2015 at 3:32pm
 
Hi Emma,

I sent you a PM this morning with my number. Give me a call whenever you wish.

Keep well,


Peter.
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Re: Help in getting OXYGEN prescribed
Reply #90 - Sep 26th, 2015 at 7:05pm
 
Hi Smiley
Thanks for replying to me guys Smileyand Mike thanks for the pm with the links to the ch research and for introducing me to Thierry and Peter.Its great to hear from other Irish people about their experience.Ill print some of the info and bring it with me to my appointment Monday. Thierry I also have a medical card so its such a relief to know I can get the o2 with that SmileyOne less thing to worry about,now just to convince them to give it to me.Everything is just so overwhelming at the minute there is just so much information out there so thank you all for making it easier for me. I really appreciate it  Smiley
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Re: Help in getting OXYGEN prescribed
Reply #91 - Sep 27th, 2015 at 2:57am
 
Hi Emma,
I've replied in the "123 days PF" thread, page 92.
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Emma marie h
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Re: Help in getting OXYGEN prescribed
Reply #92 - Sep 27th, 2015 at 7:29pm
 
Thank you Thierry Smiley
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Re: Help in getting OXYGEN prescribed
Reply #93 - Sep 28th, 2015 at 3:01pm
 
Hi guys, Just letting ye know how my appointment went today.

When my GP said specialist what he should have said was whatever consultant is working that day. In my case it was a gastro specialist. He never even heard of CH,tried to say it was a type of migraine, I showed him my headache diary that I have being keeping since February which logs date,time,duration,symptoms and pain level of each headache and he could not explain why they come in clusters that I could set my watch to and why they last short amounts of time(in comparison to migraines)  That is when he said he was a gastro specialist and said he would send a letter of referral back to my doctor for me to see a neurologist.But it will be at least a 12month wait with my medical card,I said I would pay to be seen sooner. The nurse that was there was amazing(her friend has CH)so she knew more than the doctor,although never heard of 02 treatment,she said not to waste my time with the neuro I was being referred to that she wont listen to me about 02 or the vit d, her advice was if i am willing to pay, go to a neuro who is already treating someone with ch.So I was hoping Peter and Thierry that I could have the name of one of your  doctors? I hate to ask but I am desperate. My partner and I are not in a position to do it based on trial an error, we just don't have the money. Not one doctor or nurse that I spoke to today had heard or agreed with 02 being given to CH suffers.What was said to me at one stage was "there are 5 other people in this room today,all have headaches none of them request oxygen to help them"At that stage I broke down,explained the damage CH is doing to my life,I said I have a two year old son,the best they could do was arrange an MRI for me.which I guess will be an advantage when I see a neuro. I should have known it was too good to be true, getting everything sorted out so quickly.

On the plus side from today my CT scan etc all confirmed I do not have a brain tumor lol  Smiley

Thanks again guys

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Re: Help in getting OXYGEN prescribed
Reply #94 - Sep 28th, 2015 at 3:52pm
 
Emma,
I sent you a PM.

Peter.
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Re: Help in getting OXYGEN prescribed
Reply #95 - Sep 29th, 2015 at 4:38am
 
Hi Emma

It doesn't sound like the best you could have expected for, but when you look back at it there are some positives:
  • At least the specialist admitted that he didn't know things, so you didn't get a misdiagnosis.
  • You showed how much you have learnt, which is a great benefit to you in getting the right treatment. Just think of the difference of knowing what to ask for (e.g. oxygen) gives you over people just wanting the doctor to do everything. So much about CH is having the right knowledge and pushing to get things to happen.
  • You have been put on the process to see a neuro. Now just a case of getting to see one with the right knowledge and experience of CH. I see you've been trying to find who other CH people in Eire see, so you're on the right track here. Even if they are at the other end of the country, a long drive will be worth it.
  • A 12 month wait sounds long, but chase up on cancellations, that might cut is shorter. But paying to jump the queue might be worthwhile once you've identified the right person to see. It isn't just about the money, it is about seeing someone who can help cut back the impact that severe headaches have on you.
  • The CT scan ruled out some potential causes of the CH symptoms which would need urgent treatment.

Sometimes it is about seeing where you've stepped forward rather than seeing where things haven't gone perfect to how you wish they had done.
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thierry
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Re: Help in getting OXYGEN prescribed
Reply #96 - Sep 29th, 2015 at 11:29am
 
Hey Emma, Like yourself, I' m delighted to hear that you don't have a brain tumour.
Sounds like a fairly typical day with the Irish health system  Angry     sorry to hear that you had to endure it in such a way.
Is never any problem asking for info, keep throwing the questions you might have.
Sending you PM
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Emma marie h
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Re: Help in getting OXYGEN prescribed
Reply #97 - Sep 29th, 2015 at 6:20pm
 
Hi guys,
Feeling a lot more positive today, Thanks to ye Smiley
Mike you are definitely right, 6 weeks ago before I found this site I didn't have a clue about 02 as a treatment (among other things)all I had was my bag of frozen peas!! Smiley, thinking about that makes me very grateful for the position I am in now. The nurse in the hospital told me I was in for a long battle so I am trying not to dwell on the bad anymore and get organised/PERSISTANT lol Smiley
Thanks Thierry for the pm with your doctors info, I plan to ring first thing in the morning Smiley Peter also is helping me with his(thanks again Peter).

I already feel like I couldn't live without this website, ye are an amazing bunch of people  Smiley
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Re: Help in getting OXYGEN prescribed
Reply #98 - Sep 29th, 2015 at 8:18pm
 
Emma Marie,

What did the people at the hospital say when you handed them a copy of the HOOF...  the NHS Home Oxygen Order Form?

The sample screen shot clearly indicates Home Oxygen Therapy is available for Cluster Headache

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I can understand that none of the medical people you spoke with were familiar with cluster headache...  We're talking about a rare, orphan disorder...  Accordingly, there are a lot of neurologists who are clueless when it comes to cluster headache as well.

Ignorance of cluster headache not withstanding, one would assume the medical professionals you spoke with are capable of reading and comprehending English in the above form...

I've attached another copy of the HOOF... Click on the title at the bottom of the page to download it to your computer.

Contact BOC Healthcare Ireland at the following link and ask them for the fastest way to obtain home oxygen therapy as an abortive for cluster headache:

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Take care and please keep us posted...

V/R, Batch
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« Last Edit: Sep 29th, 2015 at 8:20pm by Batch »  
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Re: Help in getting OXYGEN prescribed
Reply #99 - Sep 30th, 2015 at 12:11am
 
Batch - Emma is in the Republic of Ireland which is not covered by the NHS which only covers England, Scotland, Wales and Northern Ireland. So the HOOF form does not apply.
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