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Posted in CBD on 24 Sep, 2021 - 8:18 pm

Hi Danita

I have tried it and have not found it to be effective. Sorry,

Alex


Posted in Getting Oxygen Treatment on 24 Sep, 2021 - 8:03 pm

Hi,

I also had two sizes. One for home and a smaller one as a "traveler"!

Cheers,

Alex


Posted in Getting Oxygen Treatment on 24 Sep, 2021 - 8:03 pm

Hi,

I also had two sizes. One for home and a smaller one as a "traveler"!

Cheers,

Alex


Posted in Getting Oxygen Treatment on 24 Sep, 2021 - 8:03 pm

Hi,

I also had two sizes. One for home and a smaller one as a "traveler"!

Cheers,

Alex


Posted in Anyone else's CH go to eleven? on 27 Nov, 2015 - 9:58 am

I agree that a pain scale specific to CH is required. The Kip scale is a step in the right direction however does not accurately describe my pain or symptoms. On the Kip scale most of my attacks start at 7.
I personally put them at a 5.

7 is when i am vomiting from the pain and mucus.

8.....9 and then 10 is screaming and crying on the floor , sweat dripping off me, wanting to rip my head off. I once called 000 at a 9. It is why we have a land line as it has buttons you can feel. It took a while as I had to formulate a word ( my name ) get it to my mouth and speak it.

11. I believe that this is when you become unconscious and did not think that CH let you. Although I would seem to be wrong. If only we all reached a point and passed out for the rest of the attack!

I like the idea of the Richter scale idea and would be interested in anyone coming up with alternatives that are a best fit for CH sufferers.

The Pain Quality Assessment Scale is also interesting.
https://www.painedu.org/Downloads/NIPC/Pain_Assessment_Scales.pdf[/
L]


Cheers

Alex


Posted in Save my life, please recommend Neurologist in Sydney for Cluster headaches on 07 Jul, 2015 - 3:24 pm

Please see my current topic regarding Sydney Neurology and. Dr Jane Prosser


Posted in Sydney Neurology / Dr Jane Prosser on 07 Jul, 2015 - 3:17 pm

I find myself in a dilemma. I have recently been a patient of Dr Prosser's and Sydney Neurology and have previously recommended them. However I have had a worsening in my condition as well as a new development.

Unable to get through to Sydney Neurology I presented at RPA Emergency. I have been trying to get a response from anybody useful including Dr Prosser ,via email and telephone, since the 15th June.
Emails were sent on the 24/6 and 29/6 asking for help. This was followed up with phone calls and me resending these emails on the 2/7. I have not heard from anyone and have been managing as best as I can with help from my GP and family.
My pain and distress combined with nightly leg spasms has got me to the point where I have called on the help of the local Mental Health Acute team.
Following is my most recent interaction with Sydney Neurology, the most recent first so you may wish to start at the bottom.
I leave you to make your own judgement.

Alex



Dear Rene,

Thank you for prompt yet flippant reply.

And no point in my previous contact with your practice was I advised that Dr Prosser was on leave. Therefore the only assumption I can make is that this is untrue or that you are unaware of what is occurring in your own organisation. There is no benefit in forwarding my email to Dr Prosser, as she is unavailable to me.

I must also assume that there are no provisions made for patient care should a patients condition deteriorate and there regular doctor is unavailable. I can only count myself as fortunate that I have nothing more life threatening.

I have forwarded my concerns the NSW Health  Commission.

Yours sincerely,

Alex Nisbet

--- Original Message ---

From: "SN Info"
Sent: 6 July 2015 1:45 PM
To: "Alex Nisbet"
Subject: Re: Att: The Practice Manager - Feedback

Alex,

Thank you for your email I will forward it to Dr Prosser, although she is
currently on leave.

Rene
Practice Manager

Sydney Neurology
Level 4, 94 Mallett Street, Camperdown NSW 2050
Ph: 9351 0730  Fax: 9351 0653
info@sydneyneurology.com.au
www.sydneyneurology.com.au


On 6 July 2015 at 13:13, wrote:

> Good morning,
>
> Due to the response to my previous emails, and follow up phone calls, I
> believe that I have exhausted the ability of Sydney Neurology to assist me
> in the management of my Cluster headaches, and a developing epilepsy type
> condition, as yet not properly diagnosed.
>
> After reading how Sydney Neurology was a " centre of excellence in
> outpatient neurological care and a focus for clinical neurology research ",
> I was excited at the prospect that I had found a practise that may have a
> proactive approach to my condition.
>
> I believe you have failed in your duty of care and have attributed to a
> possibly harmful situation developing which could have easily avoided by a
> response from Dr Prosser.
>
> After presenting at RPA emergency due 16 hours of violent leg spasms, and
> a subsequent seizure in my right leg, I was prescribed medication by the
> neurologist on duty. This coincided with a rapidly worsening of my CH. I
> have been trying to contact Dr Prosser as my Neurologist, on the insistence
> of my GP, Pharmacist, RPA, and the local mental health acute care team. My
> main concern was the mounting number of prescribed medications and their
> interactions and effects. Also with a change in circumstances I needed
> advice on how to proceed until my next appointment.
>
> With 3 to 5 severe CH attacks daily combined with spasms, and no further
> advice available, in desperation I have turned to Google to try and use the
> medications prescribed me in any way that may have eased my situation. I
> believe it may have been the combination of the varapamil, diazepan and
> oxycodene, that that allowed me to get some sleep.
>
> While we all accept that the condition is not easily dealt with, CH
> sufferers deal with scepticism, apathy and ignorance from Health
> professionals, friends and well meaning strangers continually. If Sydney
> Neurology and your team are unable, or unwilling to deal with CH sufferers
> they should not be accepted as patients. If you believe that our quarterly
> visits and occasional emails are a burden, spare a thought for the family
> members, GP's , Emergency departments, and mental health professionals, who
> assist us the remainder of the year.
>
> On my recommendation previously, I have been contacted by two other CH
> sufferers who now have upcoming appointments with yourselves. I am
> extremely concerned that I have now exposed them to potentially sharing the
> same experience that I have had. I will delay responding to them till the
> middle of the week, in the hope that this email may deem any response from
> yourselves.
>
> I have cancelled any further appointments.
>
> Yours sincerely,
>
> Alex Nisbet
>


Posted in Save my life, please recommend Neurologist in Sydney for Cluster headaches on 06 Jul, 2015 - 12:55 am

Greg,

I use BOC gas. Ring their healthcare number. They will send you a form to be completed by your GP. They then open an account and order away. They deliver next day.
You can rent a regulator, and they provide basic tubing. You will need to go to Emergency at your local hospital and ask for a re-breathing mask.
I order an E size for home . This has to be delivered, as I do not have an approved vehicle to transport them. Then the smaller C ones are my.travellers. you can pick these up no problem.

Keep in mind that O2 doesn't always work for everyone, but is great when it does.

If you get the chance to get to Emergency just say you have CH and that you require high flow O2 (15l/m). They usually get you on it quickly.

Cheers,

Alex


Posted in Save my life, please recommend Neurologist in Sydney for Cluster headaches on 06 Jul, 2015 - 12:28 am

gregsydney said:

"Hi Alex

Thanks for your reply

I started up again on prednisone a couple of days ago and today is the best day I've had in about 10 weeks. Still feel the shadows of one but it hasn't hit as yet thank god.

On top of this I have infected sinus as well which is making it worse. Currently on antibiotics to clear that up.

The only drug I find affective when I have a cluster if maxalt. Nothing else seems to work.

My nuero im seeing at the moment has also mentioned Oxygen but that would be going to emergency an doing it there which is the last thing I feel doing when I have a attack. He also suggested I call him in extreme cases to go to St Vincent's ( that's where he is based ) and have intravenous prednisone but not sure how I would cope with that large dose.

Do you have any info on how to get the home kits of oxygen and where from?

Thanks again

Greg"


Posted in VERAPAMIL on 15 Jun, 2015 - 3:15 am

Hi Kim,

I think we have the same ambo's! My last trip to RPA they mentioned they had another sufferer in the area.
Have recently tried Verapamil with no luck. You must have a stronger constitution than me, because I only got to 540mg. I ended up feeling like I was having a heart attack, stumbling when I stood up, and falling asleep at every opportunity. All this to lose two days of headaches a week.

My neurologist said that she didn't know of any elderly patients so figure that if I don't find a treatment that works there is a light at the end of the tunnel. In the meantime will keep taking my happy pills and seeing the shrink occasionally. I did try to opt out once but glad I was thwarted.

It is shit' but hope the in between times are good.

Cheers,

Alex


Posted in Article about research into hallucinogenic drugs. on 15 Jun, 2015 - 2:41 am

I met an nurse recently whose mother experienced temporary relief after taking mushrooms.
I have tried both LSD and mushrooms with no benefit, although the mushrooms where a small dose.
From the reading I have done you do not need a recreational dose to receive the benefit of CH relief.

Amphetamine will prevent an attack, and there has been some success with Ritalin.

Personally I would like to see more research done into the possible treatment with psilocybin. I feel convinced that the cause will be found by working backward from the chance finding of a successful treatment, and therefore all avenues should be explored.


Posted in Save my life, please recommend Neurologist in Sydney for Cluster headaches on 15 Jun, 2015 - 2:26 am

Greg,
Contact Sydney Neurology in Mallet St, Camperdown. They are all very knowledgeable and collaborate so don't need to be too picky as the all had a knowledge of CH. Your profile doesn't say a lot, but I get your distress.
http://sydneyneurology.com.au/about-us/


Get yourself an E size O2 for home and a C size for taking with you. Make sure you go to your GP, get a mental health plan and get a referral for a psychologist. Also ask for Imigran nasal spray for when O2 is not available. A big shot of caffeine at the onset also helps, but not at night ,as you need all the sleep you can get.

This is how I keep going while working my way through the different medications. If you need to make sure you illicit help to make the appointments and to get you there if necessary. One foot in front of the other.

Feel free to PM if you wish.

Cheers,

Alex


Posted in Who will prescribe oxygen in Melbourne? on 14 Dec, 2014 - 8:32 am

Matt,

I have found that they do not need to prescribe it. If you are prepared to pay for it yourself. I would suggest contacting BOC .gases.

Home Care and Aged Care

Phone us Fax us Email us
1800 050 999 1800 624 149 homecare.au@boc.com

They will provide you with a form for your doctor to fill in, setup an account and away you go.

It is not as expensive as I thought, though depends on how much you are using.. They do next day delivery and have been extremely helpful.


Posted in New alternative treatment breaks cycle. on 10 Aug, 2014 - 8:42 am

Well have tried it a couple of weeks ago , although I combined it with DMSO which I was trying for the first time as well.

I did notice an almost immediate reduction in the frequency and the severity of the attacks and as a result have only required o2 half a dozen times since. At the time I was getting CH 3 times a day ranging from a 4 to an 8 in pain.

Thanks for the "purge". It is easy to do and , although I had to adjust the times from those recommended as I work late.

Would love to hear dome more feedback from others.


Posted in Attention Australian Residents on 17 Jul, 2014 - 2:38 am

Have just watched it and was really pleased to see it being discussed. Thank you to all those that took part or prompted its making.

I have spent so long hiding from people when I have an attack , however this will change nothing. We need more help and understanding, so be proud of having the strength to live with CH.

I find people like Tom ( http://www.clusterheadsurvivor.blogspot.ca/ ) inspiring


Posted in Don't Drive.... on 04 Apr, 2013 - 9:06 pm

I tried to get myself to hospital ,thinking I had time before it really peaked. I got 200 m up the road , and had a then someone was putting a nail through my head.
I stamped the accelerator, sped up and went head on into a parked car , which shunted backwards and into another. All I could do was fall out on the footpath and wait till the neighbours, police and ambulance gathered.

I am mortified about what could have happened because of my impaired judgement. As it was I only wrote off two cars, injured my head and shoulder. The shoulder will take a while but it could of been worse. Don't even think about it, no matter how desperate you feel


Posted in Imigran is a miracle drug! on 27 Feb, 2013 - 12:30 am

Imigran has helped me in the past immensely. I was using the nasal spray (20mg) , which was fast acting and effective.

However at the peak of my episodes I was taking four doses a day (80mg), and then it ceased being effective. My lifeline was lost. I am sure this dose was not good for me , however was the only thing that kept me functioning and out of A@E.

Do try the nasal spray as , unlike tablets , absorption is rapid and you can hopefully avoid the injection.

Cheers

Alex


Posted in Why me.....????? on 15 Jan, 2013 - 11:46 pm

Ben,

You make the point yourself. It is about keeping it together for the good times. My CH have lead to depression etc, and the worst thing I did to my partner was to have her find me hanging in the bathroom unconscious. She saved my life however I betrayed her faith in me.

I have since made a commitment to tackle it all and with her support it has been a huge improvement. We sought all the help we could and took everything that was on offer. Being sound in mind makes it easier to cope. It would seem that CH creates more than just a pain in the head, and we all need to deal with the other issues it creates.

If I had succeeded I would have missed so much, and my family would have not had a husband an father. If anyone would like more practical advice please let me know.

Cheers

Alex


Posted in Deseril on 15 Jan, 2013 - 11:36 pm

Have had to take Deseril as the Imigran stopped working for me! I found the 20mg Nasal spray the most effective , however was using 80 mg a day. Got a bit of resistance about the scripts but got a letter from the neurologist from RPA when I ended up there a few times. I guess they figured the scripts where a better option.

In regards the Deseril the doctor told me to keep upping the dose until it works! So I self medicate. I do not want to take it but am between a rock and a hard place. I find 5 mg a day split into 2 doses does the trick. Still get headaches but manageable. Am now cutting down as the end of my cycle.

Alex