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Income protection to cover cluster headache (pre-existing condition)

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From: Forest Hill
12 total posts
Not currently suffering :D
Hi everyone,

I'm Belle, new to the website and a cluster headache sufferer for nine years. I'm wondering if anyone has obtained income protection to cover cluster headaches? I've just spoken with Medibank Private and was honest in telling them my pre-existing condition. Because of the pre-existing condition I am ineligible and cannot receive any cover. I am not all that surprised by this but if anyone has gone through this before and has any advice or suggestions I'd be greatly appreciative.
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137 total posts
Not currently suffering :D
Hi Belle,

Sorry you had to find the site.
This is waaaay outside of my area, so I can't offer any help on income protection, sorry about that. I'm not much use to you there. CH can put you on Disability Pension, I know that much, there's an income! No seriously, I am sure someone will chime in with some timely and relevant info for you soon.

One thing that I do find very interesting though, if you can humour me for a minute here...
(Sorry about this, don't want to scare you off or anything, first visit and all...)

You must have experienced the lack of awareness of your CH condition, right across the board, from Doctors, Employers and pretty much anyone you meet.
Explaining CH to those we come across is not easy for any of us.
There is a big struggle for CH recognition in the wider world, that's for sure.

E.g; - The Pharmaceutical Benefit Scheme (PBS) will not yet officially allow prescription of any PBS subsidised drugs for use in CH, in Australia.
(To receive Imigran, either GPs must "bend the rules" and state that we have Migraine or even worse "Migraine/Cluster Headache", which makes CH recognition even more unlikely and complicated. Or, specialists prescribe CH medications for "off-label" or "experimental use" for CH, internally through a hospital Pharmacy.)

In a practical sense, most of the Australian medical system still does not recognise CH without a push, with perhaps the exception of specialist care in a clinical setting.

I am wondering, if through your honesty, you have unintentionally found a form of CH recognition in perhaps the wrong place...

If Medibank Private recognise CH as a medical condition so as not to insure against it, pre-existing or not, I do wonder on what grounds they consider you to be ineligble and hence, refuse to take your money.

They must have a CH definition somewhere, or recognised diagnostic criteria, in order to have established grounds to officially knock you back...

I am sure many of us would like to know how CH may have become officially recognised by institutions like Medibank Private, or from what literature they are reading.

(I'm not asking for this info from you, it's a bigger picture problem for us all), but it would be nice if Medibank Private could tell us all how they officially recognise CH, when so many others in our social and medical systems do not.

I'm interested to hear what they have to say.
Maybe I will ring them and ask.

Thanks for the heads up Belle.
It has given me food for thought, where I may find a possible answer for you...
I shall investigate.
Sorry my post is of no real use to you.

Cheers, Ben.
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137 total posts
Not currently suffering :D
Belle, upon further investigation, it looks like Medibank Private use the 2 Doctor certificate system to establish "pre-existing condition" status; One treating GP and one specialist to sign off on your condition.

(Meeting this same criteria in Chronic, intractable CH will get you a disability pension...)

I can't locate any list of medical conditions with them, I presume this is why they appoint the 2 Doctors, to provide the medical expertise and diagnoses to the insurer.

The (PEC) Pre-Existing Condition rule states that the waiting period (MP F3.6) is 12 months, I can find no exception. If after 12 months they can't refuse treatment, perhaps they can't refuse income protection insurance either, if both insurances share the same rule.

On their form "Pre - Existing Condition Certificate", they say they can only exclude you from health insurance for 12 months for a pre-existing condition:

"Pre -Existing Condition (PEC) means a Condition, the signs or symptoms of which, in the opinion of a Medical Practitioner appointed by Medibank Private, existed at any time during the six (6) months ending on the day on which the Member joined Medibank Private or transferred to a higher level of Cover."

"The Pre-Existing Condition (PEC) Rule is applied in the first 12 months of membership of any cover where, in the opinion of a doctor, dentist, or other practitioner appointed by Medibank, signs or symptoms of an ailment, illness or condition related to a claim were in existence at any time during the 6 months preceding the date of commencement of membership of that cover. "

I would hazard an educated guess that if they will insure you for health cover, after an exclusion/waiting period of 12 months they would have to treat your CH, even if declared as pre-existing.

I have searched the site and can find no clear distinction between "private health insurance" or "income protection" in relation to the specific application of the "pre-existing condition rule". They are both insurances offered by Medibank. The above quote does say "any cover", so I presume that means - any cover, including income protection, which I understand from their advertising is a "level" of cover. (But this is insurance, I could be misled here)

They may not wish to insure against CH, they know it is expensive to attempt to manage or treat and is likely to cost them a lot more than you will pay in premiums. However, I don't think they can exclude you.

I think, to single you out as ineligible by medical condition itself, may be discriminatory. They may have to offer you income protection insurance, especially if you are already insured, have declared your pre-existing condition, have waited the 12 months and then go on to apply for a policy upgrade that includes income protection.

Just a guess, like I said, insurance is outside of my area (sifting the fine print is right in my area), but insuring and sitting out the 12 months may be a way in on income protection...

Hope this helps.

Cheers, Ben.This post was edited on 09/05/2013 at 11:23 pm
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From: Forest Hill
12 total posts
Not currently suffering :D
Hi Ben,

Thank you so much for your reply. It's great to hear your thoughts on the subject even if you cannot offer any info on income protection. I should be researching Disability Pension...couldn't be more accurate!

I know exactly what you mean about lack of awareness across the board. I have a feeling that we can unfortunately add Medibank Private to that list. I am unsure that I have stumbled across a form of CH recognition.. Once I spoke the words 'pre-existing condition' I was put on hold while the operator went off to speak with a manager. The operator had never heard of CH and I had given her all relevant details and how it affects my working life. Once she returned from speaking with management the answer was clear. They cannot offer me income protection due to the condition being pre-existing. She didn't elaborate any further as to how they came to that decision, but the overall feeling of the conversation pointed to lack of awareness, most definitely from the operator but also from management.

I did not stay on the line to delve deeper as it had already been a 30 minute phone call to get that far. I would be very interested to hear of your findings if you do decide to investigate further.

After 9 years I wish I could say that I have the condition under control, but each year it is getting harder to manage mostly due to being unable to work for up to two months.

Thank you again, Ben, for your thoughtful response.

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From: Forest Hill
12 total posts
Not currently suffering :D
Just received notification of your second reply.. reading now!
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From: Forest Hill
12 total posts
Not currently suffering :D
Hi Ben,

Wow, thank you for the information. After reading through your post I feel as though the phone call today will not be the last of it and I should not give up on it yet. I greatly appreciate the time you have put into research tonight. I will post again once I make contact with Medibank Private for round two.

Iíve always known that suffering from CH for only two months of the year is mild compared to some, but I have just read in your profile that you have been affected since age 4 for 10 months of the year on average.. absolutely shocking Ben. Now I can see why disability pension is most certainly necessary for some sufferers.

I am seeing a new neurologist this year, she is the third one Iíve seen and has prescribed a range of medications that the other neurologists never spoke of. Iíd love to hear your thoughts on that topic sometime. I will find the right thread to discuss it.

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137 total posts
Not currently suffering :D
No worries, glad to help, Belle.

Episodic CH for 2 months of the year is likely to be a relatively cheap condition for an insurer to manage, not that expense is, or should be a factor. Some private health insurers fork out up to $130,000 in one year, in various surgeries and in management of chronic CH cases, as one of our members will will testify.

I have no experience with insurance whatosever, but if they could discriminate on the grounds of medical condition alone, they would never be able to insure even a diabetic, which would probably cost more to treat than an episodic CHer in a calendar year.

They don't need any knowledge or education on CH specifically.
They simply seek to classify your CH as "pre-existing" and rightly so.
But the exclusions are in place, so I can see no reason why you should not be insured by them.

I would certainly question the validity of any decision to exclude you and ask them on exactly what grounds you would be considered "ineligble", for sure.
Even get them to put their refusal in writing.
My advice would be to conduct all business with them in writing.
Phone fob-offs are easy for them to get away with, but laying "pen to paper" or committing to a position in an email, or letter gives you written evidence to support your position.

Perhaps, fill in a policy application, (take a copy of it) submit it and let them knock it back.

You may find them all of a sudden, quite co-operative!

Good luck with it.

I have far more experience with medications in CH, than with insurance... In the meantime, there are many here who can help you to get relief.

Perhaps check out "Batch's anti-inflammatory regimen", it beats most available drugs used in CH, that's for sure...
Either here:[

Or go straight to the source, with Batch himself:

But, if you have to go for medications, perhaps we can help.
I know a few people who know a bit about Pharmaceuticals in CH. ;)

Cheers, Ben.This post was edited on 10/05/2013 at 8:29 am
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From: Forest Hill
12 total posts
Not currently suffering :D
Hi Ben,

I hope that you are doing well. Thank you for the information on "Batch's anti-inflammatory regimen". Keen to look further into that rather than fill all the scripts that my neurologist has written. In regards to my initial post on income insurance at this stage I will not be able to progress any further. Medibank Private requires me to be in the same line of employment for 12 months before I can apply. I have just recently commenced a new position so I will have to reassess in 11 months.

I am wondering how any of us affected by CH manage to get by when we are unable to work for long periods. I would hope that the disability pension is enough for chronic sufferers to make ends meet as they of course need far more help and support. I am thinking of beginning a new topic to ask the members how they have managed to cope throughout the years.

Speak soon,
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137 total posts
Not currently suffering :D
Go for it Belle!

Fire away, there are so many ideas in heads here!

While insurance companies jerk you around, we are focused on CH relief here and now. We all understand that CH don't wait for no-one!

Batch's regimen (I know I flog it) is really something.
I have only seen anti-inflammatory response (and CH relief) like this from Prednisolone. This is much, much safer. It can take a while - even 4-5 months to get 25(OH)D levels (Vitamin D3) up to where you need them, but the health benefits are amazing!

What scripts have you got there Belle, out of interest?
Just want to see if your neuro is on the ball or not...

Welcome anytime, we need more input!

Cheers, Ben.This post was edited on 14/05/2013 at 7:36 pm
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From: Forest Hill
12 total posts
Not currently suffering :D
Hi Ben,

Thanks for your message and sorry for the delay in replying. Here are the details of the scripts that I currently have:

Imigran Nasal Spray 20mg/0.1mL
Prednisolone Tablet 25mg
Deseril Tablet 1mg
Temazepam Tablet 10mg
Indomethacin Suppository 100mg
Indomethacin Capsule
Stemetil Suppository 25mg
Maxalt Wafer 10 mg

I am very unfamiliar with most of these having only been treated with Verapamil, Prednisolone, and ergots in the past without any success. I was offered intravenous steroids a few years ago but found that my health insurance wouldn't cover the inpatient costs. The fees upfront were around $2000 in a private hospital so that option just wasn't possible. I would have gone into a public hospital of course but there was a long waiting list. This is the first year since it all started in 2005 that I feel slightly more prepared. I've set up an account with Supagas and it is helping great deal just to be able to chat to you and the members.

Looking forward to hearing your thoughts smile I have a day off on Saturday and will start a new topic with the members re: coping strategies.

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137 total posts
Not currently suffering :D
Hi Belle,

Unfortunately we lost our resident O2 expert, Barry T Coles earlier this year, we miss him a lot.

There is still plenty of info on O2 around and not only does Batch do the work on the regimen, he knows a thing or 2 about O2 as well. I'm sure locals will chime in with some O2 usage tips on finding the right mask, regulator and breathing techniques. I'm not an O2 user, so I defer to their expertise on this one. Check out the BTC O2 page and the O2 suppliers register we set up in his honour, tabs are on the left Belle.
Getting the O2 happening is a very good idea.
Hats off to whoever is pursuing this line of inquiry.
Have you trialed O2?
Has it worked for you?

Re: The drugs you have there.
I hope you're not taking them all.
I don't want to scare you, but that's potentially lethal, in some combinations...
Forgive me if I'm telling you stuff you already know here...

I'm not a Doctor and can't venture onto the slippery slope of handing out medical advice, but I do know these drugs well and can encourage you to read the current literature on these drugs and the CMI (Consumer Medical Information) sheets and the more complex PI (Product information) sheets.
They're on the PBS Medicine A-Z listing where you can search for the drug and it's data sheet in alphabetical order, again, a tab on the left. smile
If you look up a drug brand name on wiki, you can then find the active ingredient and search for info on that back on the PBS site.

Imigran nasal spray (Sumatriptan) - Triptan drug group
Maxalt wafer (Rizatriptan) - Triptan drug group.
Do not use these Triptans within 24 hours of eachother.
Never use them as preventives, they are abortive drugs, for use on a per attack basis.
Triptans should not be used with Ergots.
Triptans should not be used with an MOAI type anti-depressant medication.
Deseril (Methysergide) is an Ergot alkaloid, so do not take any of the above triptans with Deseril, or any other ergot-alkaloid. Ever.
Maxalt is generally too slow to work in CH, I would suggest trying to get hold of Imigran (Sumatriptan) in a tablet form (Fast Dispersion Tablet - FDT) or even injection form, if the attacks are real bad.

Temazepam is not contraindicated with anything else you're on.
Everyone needs a good night's sleep.
Taken at the same time each night, it may help to reset your bodyclock, which in turn, may help your bodyclock to reduce CH attack frequency, especially at night.
(Just my experience. Occasionally I use 14 days of Temaze to reset my bodyclock, but no more than 14 days)

Prednisolone is a transitional treatment, used in the very short term (4-6 weeks tops) in a gradual downward taper. Usually this buys you some relief and your treating physician some time in which to transition to a more suitable preventive medication.
It is not a preventive, or an abortive and should be used sparingly...

Deseril (Methysergide) is a particularly nasty drug.
I had 4 years experience with it, not pleasant for you or your liver.
It is an Ergot-alkaloid and works in similar ways to triptans (Vasoconstrictor), but they will prescribe it as a preventive. Usually 3 months on, 3 months off, so as to give your body a rest. It is being used less and is no longer sold in some countries due to the bad side-effect profile. Australia is one of the last places on earth still prescribing it.
If you say Ergots didn't work, from my personal experience, I would ditch Deseril before it causes issues. After 4 years solid use, I did ask "If this is an Ergot-alkjaloid, can I take it on a pre-attack basis?" (As an abortive) the answer was, if it works for you, then yes do it.
From a not particularly well educated GP mind you...

Indomethacin (Indocid) has no place in CH treatment.
Neuros will prescribe it, often checking you for a response, in which case they can rule out CH from your diagnosis. It is a good diagnostic tool I suppose.
Headaches like Paroxysmal Hemicrania show an "absolute Indocid response".
CH does not usually respond to Indocid, or any of the NSAIDs (Non-Steroidal-Anti-Inflammatory Drugs) like Nurofen (Ibuprofen), Voltaren (Diclofenac sodium or potassium). It will burn a hole in you gut. I'm not trying to fear monger here, but Indocid is a well known gut burner, with 50+ years of history in causing GastroIntestinal issues, like ulcers. It's response in CH is minimal and it's relevance to CH treatment, questionable... I would ditch that one too, it's another one that is being used less and less.

I am not familiar with the Stematil.
I suspect you've been given it for Nausea?
For what condition was this prescribed, Belle?

It may be contraindicated with sleeping pills or any other drugs.
I must read up on this one for you and get back to it, I have a full day ahead of me.

Bear with me belle, I will locate and link up all the datasheets later.
I will see what you're actually taking right now and find any obvious dangers.
Like I said, I'm not a Doctor, but this lot could put you in some serious trouble.
Depends which you are currently taking.

I will be back onto this ASAP, I have some researching to do and a few people to talk to about Stematil and CH.

Back soon.

Cheers, Ben.

By the way, if you wish we can take this over to PMs, or even email, up to you.
But the forum does give others a chance to learn from Doctors mistakes and CHers experiences...This post was edited on 17/05/2013 at 10:18 am
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From: Forest Hill
12 total posts
Not currently suffering :D
Hi Ben,

Thank you very much for all the information and your time, and Iím sorry to hear of the loss of your O2 expert, Barry. I have trialled O2 in the emergency room a few times in the past. The attack was well and truly happening by the time my partner had driven me there, so it took a while to have any effect but the length of the attacks was shortened after sitting with the mask for around 30-40mins. I haven't known about personal O2 use for too long and my most recent neuro wrote the script for Supagas.

Right now I am not taking any of medications. My neuro thought it best that I fill some of the scripts but not all at once. I haven't yet filled any of them and all of your knowledge and experience is helping me to decide which I will fill.

I am unsure which month the cycle will begin this year, it is changing each year now, so I have all the scripts at hand ready to go. My neuro has written out instructions as to which I should take, at what point during the attack and during the cycle, and how much of each. I was told that some of the medications I have been prescribed work in the same way as others and I am to choose which I prefer. Trial them, decide which works best and forget the others. Stemetil was prescribed to deal with the vomiting during the attack.

Honestly I would rather not take any of them and I am looking further into Batchís regimen to try and avoid taking the medications. I am also really hoping that having the O2 at hand will work miracles and I won't have to touch any of the medications. I am not sure if O2 is capable of miracles, I will read up on it as you have suggested. I havenít had a good run with the few medications I have been prescribed in the past in terms of side effects.

Speak soon,
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137 total posts
Not currently suffering :D

Great news that you are not taking that list.
It does alarm me that the level of supervision is left up to you.
There is a very small margin for error with that pile of scripts.
I hope you have follow up specialist supervision, for when you do get to those scripts.
Being left alone to conduct your own trials, with a set of written instructions is bad practice, you will need safety monitoring and feedback from specialists.
In itself, that list comprises perhaps the worst of the worst drugs for CH.
I've tried them all extensively, except the stematil and the Maxalt.

Maxalon, taken at onset of attack, can reduce Nausea.
I use it quite a bit, but with practice, vomiting becomes less of an issue.

Because I had a highly skilled headache specialist prescribing later on in my drug trialing career, I only had to try one Triptan - Imigran (Sumatriptan).
It works for me and most CHers.
It is the fastest acting of the Triptan group, though the nasal spray only comes in 2 packs, so you may have trouble getting supply and it can get expensive too.
I didn't think much of the nasal spray to tell you the truth.

Give me an Imigran FDT tablet and 25-35 minutes and I'm pain free.
Give me an Imigran injection and it begins to work in 5 minutes flat.
Without it, my attacks go on for 3 hours.

The speed of CH onset in my case will determine severity, which in turn will determine which mode of delivery I choose when using Imigran.

If I have an attack jerking me around for 5-10 minutes, this is slow onset and usually indicates that severity will be 6 or under. Tablets, washed down with a strong, hot coffee are good for these attacks.
25-35 minutes of writhing and I'm done.
If I have an instant clanger, that comes on in 30 seconds flat, I know I am headed for force 10 cluster. I whack in an injection, because I know the tablets will be too slow and would not work on that level of severity.

Sometimes I stuff up.
I take a tablet thinking I will get away with it.
Within 5 minutes I know I should have chosen injection, because CH is kickin my ass.
I could chicken out and use injections all the time, but they are difficult to access and I have used 5 in 24hrs before. They cause rebound CH attacks in me, if I use too many.
Triptan use takes patience, practice and experience.
Speed is of the essence.
Faster you get them in, sooner they work.

Sumatriptan is the go for that group called Triptans.
Forget the rest, they are not fast enough in CH attack.
My specialist prescribes Sumatriptan because he knows it is the fastest.
You would think that he may show some bias toward Zolmitriptan, having pioneered it himself. But he is a good headache specialist and pain clinician, so he prescribes what is appropriate for the patient and their condition.

I would hazard a guess here, re: Indocid.
CH is male predominant. I see a lot of females with CH diagnosis being prescribed Indocid. Indocid works absolutely in a female predominant type of headache called Paroxysmal Hemicrainia (PH). Neuros should know, from a cursory glance over the IHS literature, that CH is not likely to respond to Indocid. Based on gender and predominance stats, your Neuro may be testing to see if you have a different headache type.

Are you sure you have CH?
Not doubting you, just your treating practitioner...
Recently I helped a diagnosed female "CHer" to overturn her alleged CH diagnosis, via her Neuro, only to discover that she had Paroxysmal Hemicrania (PH)
Her headaches were a new presentation, since last year.
They had increased in intensity and lasted days, not 15-180mins, as CH does.
She had no real "peaks" in attacks.
Her pain was unilateral and behind the eye.
She had no response to triptans.
She had MS and some bad CT and MRI scans (which CHers don't)
She reported some relief from excessive doses of Nurofen, an anti-inflammatory.
I did not have to be Sherlock Holmes to see that her Neuro had misdiagnosed.
She took my posts and some print offs of a few IHS criteria with her to her Neuro.
He prescribed Indocid.
Her response to Indocid was absolute.
She is pain free. Haven't seen her since!
Great news for her and the site.

PH is very rare. My specialist has been treating complex headache conditions for over 20 years. He has only seen one case of PH and now, so have I.
Correct headache diagnosis is about pattern recognition.
One does not need a great deal of medical expertise to spot a pattern in headache.
Have a peep at the International headache Society's web based application:

Particularly at the diagnostic criteria for CH, click on that, click on Paroxysmal Hemicrania, click on any you want!
You should be able to spot your own condition pretty easily, by looking at three factors:
Frequency (How often attacks occur), Severity (Descriptions of pain levels) and Duration (How long headache types last) and peruse the list of criteria too.
You will spot it, then you need to record your specific headache condition in a headache diary.

This is why we use headache diaries.

Have you ever filled one in Belle?
They're fantastic diagnostic tools.
They help practitioners hone in on the exact condition with precision.

There's one here:

There's a link on the page, so you can download a pdf and print off a few.
When you next start experiencing pain, grab a pencil (rather than stare into a screen, eyes watering) and jot down your data in the columns provided.
Be sure to be vigilant (don't get slack!) and as accurate as you can be.
I know it's hard in a post attack haze... but write down what you can.

A pattern will emerge. Even if you're dead certain you have CH, it is wise to collect data for a while. It can either overturn, or help to confirm or reinforce your diagnosis.
The correct way to differentially diagnose CH is by taking a detailed patient history.
There is no other way, no confirmatory test for CH, you can't see it on a scan, or measure it in pathology testing.
Proof lies solely in the data you collect and arm yourself with.
Also when some smarmy Neuro decides to punch holes in your story - you have armed yourself with the data - knowledge is power, my friend!
Back yourself!
I suspect Medibank (remember them? they started this!) might question your diagnoses later, with their appointed practitioners (with their agenda in hand; to minimise claims...). You will have the data collected and they can't knock you back!
It may just be all the proof you need.
It may be all the proof you have...

Re: O2

Here's a CHers user's guide to O2.
If you drop me a PM, I can put you in touch with Batch, he is one of the leading O2 specialists. He will take you through it, maybe even send you one of his patented regulators, get you onto the right masks, which we don't have yet "O2ptimask" is an evolution on the non-rebreather mask CHers have been using.
Batch will even school you in correct breathing techniques and how to connect it all, via Skype. The guy is a legend, true Gentleman and very helpful.

Enough information overload for one day.
Apologies Belle.
My head is full of info, when it's not full of pain!

Cheers, Ben.
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From: Forest Hill
12 total posts
Not currently suffering :D
Hi Ben,

I hope that you enjoyed the weekend and that you are having a good week so far.
Once again, thank you very much for the information.

Unfortunately, I am sure it is CH. In regards to a headache diary I haven't kept one but have made notes during the cycles throughout the years.
I am not entirely sure of my neuro's views on Indocid but she has written in the notes that it can be very good for unilateral headaches. I am feeling very strongly about not taking any of the meds during the next cycle and sticking with just O2. Easy for me to say that now but when the attacks begin the pain will be so excruciating I might change my mind - on the other hand I've been dealing with CH for a long time with no help from any medication.

I'd love to get in touch with Batch re: O2, thank you.

Speak soon smile
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