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yet another new poster, but an old sufferer

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#1 Fri, 06/03/2015 - 15:07
JustinF
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yet another new poster, but an old sufferer

Hello

This is my first post, and it’s something I feel I should have done long ago (I’ve long been reading the advice and information on this forum). After a very severe current episode though, and the support and advice I received from Andy on the Ouch helpline in recent days (thank you) I feel compelled to tell you about my own situation in the hope that it resonates with some of you in the way that your posts have done with me.

I do count myself as fortunate in that I am currently an episodic suffer. I’m 39 years old and was finally diagnosed by a neurosurgeon in 2011 after my 3rd episode (my first episode was in 2005 on holiday – witnessed by my parents and sister who have since worried and felt helpless, as have friends, partners, etc who have also witnessed). This was after being misdiagnosed by countless GPs (and after spending a small fortune visiting various chiropractors and osteopaths) until I was lucky enough to meet with one who was already treating a cluster sufferer and had witnessed his attacks first hand. It was then I was afforded Imigran injections (after the Zolmitriptan tongue dissolving tablets didn’t work). I didn’t get on well with the injections, I think my first hit went into a muscle or somewhere else undesirable, and although it cured the pain I am able to get the same relief most of the time with Sumatriptan nasal sprays inside of 15 minutes during an attack (so long as I catch it early enough of course). I also use high flow oxygen which was advised by the neuro (Dr Pothen Alexander at Crawley hospital). He did suggest that Verapamil could also be considered, but due to the “lightness” and infrequency of the episodes it did not seem necessary.

My episodes have always been fairly regular with a 2pm attack in the day and a 2am attack during the small hours. Some I’ve had to suffer through (one almighty beast of 3 hours, but usually 1 hour if the meds don’t catch it – this was before I received O2) but most I’ve been able to deal with when I’ve used the spray in the past.

My recent episode began on 17th December 2014 and followed its normal course until the 20th of Jan, before disappearing. However...2 weeks later it unexpectedly returned with a vengeance and it has been uncontrollable since. I’ve been suffering for the past few weeks with attacks almost hourly thoughout the night and up to 5 attacks during the day ranging from 6-10 on the kip scale (with accompanying shadows and residue in between it has been relentless and exhausting). I’ve been using up to 1.5 large tanks of 02 in each 24 hour period and my max of 2 nasal sprays (which aren’t very effective this time, and neither helped by the nose blocking). The Oxygen has been a saviour. Without it I cannot imagine how I would have coped. I have considered that they could be rebounds, but I am staying on 02 for 15-20 minutes at 15 lpm and then a further 10-15 minutes at 10 lpm though a non rebreathing mask.....so I’m not sure what else I can be doing differently. (Although I am interested to know more about the demand valve – is this something I can purchase myself? If so, what should I be shopping for?)

This culminated a few days ago in numbness of legs and arms as I turned into bed and feeling whoozy, and I took myself to A&E worried that it was overuse. But after an ECG, and other checks it turned out to be a heavy panic attack, probably due to a lack of sleep and the stress of so many attacks. I won’t begin to explain the trauma, you will all know.

Lots of my records and access to neuro had somehow been lost by the GP during a move to a new surgery. “Fortunately” during this episode my new GP has witnessed one of my attacks in the surgery (fortunately they had 02 to hand) and have been falling over themselves since to help me get everything I need, including a new neuro at St Thomas’ hospital, which I am lucky to have as my local. I am currently waiting for an appointment to discuss future use of verapamil. In the meantime, upon Andy’s advice I spoke to the GP about Predisolone for some fast relief. The GP told me she hadn’t prescribed it for cluster sufferer before so was unsure of the dose. Thanks to Andy’s advice I was able to tell her what has worked for others, she agreed with the dosage and she has obliged. I started the course yesterday morning (they actually have me on slightly shorter course of 60mg for 5 days, and then 10mg reduction daily after this), and 24 hours after my first dose I have started to see the attacks become less frequent and milder and more easily aborted with 02. Of course, it could just be a “good” day, but it seems more than a coincidence. I am keeping fingers crossed that this will abort this episode. I’ve been off work for the past 3 weeks and aside from trips to the local shops and the GP I’ve unable to leave the house for fear of being without the 02. Again I am lucky that I have an understanding employer (although I’m sure that won’t last forever!)

None of this recent progress (particularly the suggestion of Prednisolone) would have been possible without the advice and information on Ouch...so I would like to say a big thank you not only to those who run and administer the site, the guys and girls who give up their time to lend support on here and on the support line, but also all of the other fellow sufferers who have taken the time to impart their own experiences. It may not help with the pain but it definitely lends comfort to know you’re not alone. I’m only sorry that I haven’t contributed myself until now.

Apologies if this is a bit long winded, but knowledge is king, and hopefully someone else can take something from my own experience...with the lack of understanding from GPs in general (and I don’t mean that as a criticism as mine have been very helpful) we definitely need to help each other.

I’m not a big user of social media, but have found that there is also a facebook group for Ouch which I have recently joined. It has plenty of other first hand experiences and I would recommend others to check it out if you were unaware.

I will repost in the coming weeks when I (hopefully!) see the full impact of the Predinisolone...but if nothing else it already seems to have given me some respite...even if this isn’t a long term solution, any sort of relief is good...and hopefully I will have longer term plans for the verapamil by then too.

thanks for listening..and sorry for the essay!

Justin

Fri, 06/03/2015 - 20:25
ElmaA
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Hello Justin and a warm welcome,

you have joined the right group, it's good to exchange experiences. With the only people who understand what you are going through,  I have had many kind words and help over the years,

like you I am episodic my episodes have Alwas been wakened at 1 am never needed to look at clock, and my bouts lasted 10/ 12 weeks then a period of 3 months free, I always thought myself fortunate compared to others who suffered all day long, we are all so different in as much that some meds suit some and not others,

i hope you treatment is of help to you and give you pain free time,

you asked about the demand valve,  I  bought mine through ouch about 2 years ago, I find it is good works for me very quick I use  the mouth piece rather than the mask, just my preference ,

good luck,

ELMA

 

Fri, 06/03/2015 - 23:01
Mr Git
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Hi Justin

I was episodic for 10 years at around the same age as you. I can't advise you as I am not an expert, but I can give you an insight into my experience.

The best thing I ever did was saw Prof Goadsby (now based at Kings in Denmark Hill, south London).

My cycle was about 3 months in bout followed by about 18 months in remission. Prof told me that as I progressed and got older the lengths of my bouts would increase, but that the lengths of my remission would also increase.

The first time my bout increased (before I saw Prof and knew this) I panicked and was advised to take Prednisolone. It did work, or at least seemed to work in that my bout ended. However, Prof has since explained it wasn't the right thing for me to do at that time, and that my bout would have just ended naturally anyway, it was just programmed to last 1 - 2 weeks longer than the previous one.

Although the prednisolone appeared to work at the time it came at a horrible price. Up to that point my periods of remission had been totally pain/CH free. The following remission period was trashed with endless shadows.

My somewhat simplistic, ok very simplistic conclusion was as follows:

The Beast does have to win. He is happy as long as an attack is triggered. The best thing I could do was learn how to abort the attack as fast as possible. In my case that is subcutaneous Sumatriptan injection and O2 administered via a Demand Valve. Using injections seems to be ok because the attack has been allowed to start.

I call things like Prednisolone 'suppressors' because they appear to step on and not allow the attack to start in the first place. However, I'm not convinced they completely abort the energy, which has to be released somehow, in my case 18 months of shadows.

The only 'suppressor' which I have encountered which does not seem to have a side effect is the GONB. Therefore, my standard approach to a 3 month bout was to last as long as I could with injections and O2 (normally about 6 weeks), then have a GONB and get 3 weeks relief, then see the rest out to the finish line with injections and demand valve O2.

I believe Prof and Juana agree about the GONB as Juana carries them out. I should point out there are no guarantees, it doesn't work for everyone, every time, I've just been lucky so far.

If you've been lurking for some time you will know two things;

  • We're all different.
  • Get the right neuro consultant and always follow their advice.

With regard to sourcing a demand valve I'm afraid I'm not up to speed. I bought mine several years ago direct from the manufacturers. I suggest you PM Val and ask for her advice.

Best of luck with it.

Mr Git

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Sat, 07/03/2015 - 13:58
oxfordgarage
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Hi Justin and Mr Git.....Could not agree with you both more! I am episodic and last attack was 5 years ago the worst ever! I had since 18 now 54 years old. Last time I even had intravenous steriods given but they did not work. currently in my 9th week of CH attacked almost every night I can set my watch by them. But this time less during the day. Manage to control them as best I can with oxygen and imigran injections for the 10/10 ones! Body is goosed ha! As I get older the CH cycle seems to last longer every time but a 5 year gap is the longest I have ever gone without the beast visiting my head. I hope you both find comfort and they beast leaves you soon for a long time. One big happy family of CH arent we. would not wish it on my worst enemy but at least I know I am not alone in my pain and there are people out there that understand. I ordered my on demand valve well over 4 weeks ago and paid £330 for it was told 10 days but it still has not arrived?????? Wish it would soon!!

Kieron

Sat, 07/03/2015 - 15:33 (Reply to #4)
ElmaA
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Hello Kieron ,

you are also having a really bad time,and have suffered for a good lot of years and started so young, what was your treatment like in those early years? Treatment come a long way since then but unfortunately as we all know  helps some and not others , you sound similar to mine, injections and oxygen,  the only longish break I had was last year 6 long months, YES the first ever in all these years,thought I had cracked it !!! No way it came back with a vengeance start of this year..... It shows no mercy does it.

ihope you get your demand valve soon, I have it works fine and aborts so quick ,I have had a few rebound attacks but I think it was just me on these occasions been tooo tired and just wanted back in bed, good luck with yours they are worth every penny, anything to get rid off the pain,

ELMA

Sun, 08/03/2015 - 13:17
JustinF
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Keiron, Elma, Mr Git

thanks for taking the time to reply, much appreciated. The pred has given me 2 nights almost full sleep for the first time in weeks.....and now 3rd day without an attack (just a few shadows every now and then, a general fug from the steroids and a touch of anxiety). I can still feel the beast wriggling underneath and am steeling myself for the relapse after I taper off but I was definitely ready for this break. Just hoping this bout ends naturally before that time comes.  If not then I plan to try and just tackle it with O2 and triptans until it's run its course. I have tried in the past to ride through a bad attack with no meds, in case it makes the beast happy and gives me more time before the next attack, but I haven't got beyond 30 minutes before I've reached for the oxygen...

I've heard from many sources, here, on the helpline and also from more than one oxygen delivery man that people seem to be suffering worse than normal at present...not good of course but reassuring still.

i still have one more day of full steroid dose tomorrow before I start taper off, so I will update next week

justin

 

Sun, 08/03/2015 - 19:40
oxfordgarage
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Elma I hope you get some rests bite and pray they go for you but that never happens does it the beast always wins !!! Just hope you can control them with oxygen good luck. I am trying this vitamin regime I saw on Google try anything ! Last 2 nights no attacks but lots of shadow headaches all day ? However I not sure wether it's the vitamins or I am coming out of my ch cycle who knows

Sun, 08/03/2015 - 22:49
Mr Git
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Hi Justin

The tickly flickering inside your head, that's normal, don't worry. In fact, enjoy, that bit would normally hurt!

When the steroids finish try to stay calm, don't worry and never assume what will happen.

One point on what you said. Never try to ride it out untreated. Always hit it with O2, Red Bull and cold compress. The only bit to think about is 2 injections in any 24 hrs. No idea how many you get, but use them wisely.

Two things to do (if you haven't already):

  • Get a Demand Valve. They are significantly better and make the difference.
  • See Prof and do exactly what he says. Nobody knows more about CH than the Patron of OUCH. He will give you a long term treatment plan. Do as he says and your life will improve drastically.

The right way forward is out there, you just have to work out what questions to ask, and who to ask.

Keep smiling and stay strong.

Mr Git

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Mon, 09/03/2015 - 12:37
JustinF
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Thanks a lot for the positive message!

yes, I've enquired about the demand valve, just waiting to hear back but definitely going to get as soon as I can. 

also have a gp appointment today to try choose and book for the prof. Will happily follow his advice should I get a slot to see him.

think my body has accustomed to the pred now and am going to relax and just enjoy PF time while I can...just take it as it comes (although I am itching to get back to work, and normal life ASAP!)

have tried the redbull and hasn't seemed to have had much effect (and always worry that it's hard enough to sleep in any case), but I will keep trying it.

I actually use the sumatriptan nasal sprays....they seem to work okay most of the time for me and I'm very lucky that my GP will prescribe 24 at a time for me (I never use more than 2 in a 24 hour period though!!...I save them if I can,  in case I need to be away from oxygen, so that I can leave the house).

thanks again. All the advice is really helpful and comments reassuring...

Mon, 09/03/2015 - 13:11
Rano1
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Hi Justin,

 

Where did you enquire about the demand valve?

 

Does anyone know why this is so much different to a normal mask? is it not doing the same thing?

 

James

Mon, 09/03/2015 - 13:44
JustinF
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Hi james

ive asked on the facebook page and was redirected back here. I've sent a query to the general ouch helpdesk email and am waiting to hear what to buy and where to buy it. I'll let you know as soon as I hear more.

everyone who has one seems to swear by it....think it is more efficient and faster working than using the normal non-rebreathing mask. Quite pricey by the sounds of it, but worth the investment from others experiences.

justin

Mon, 09/03/2015 - 13:46
Rano1
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if you could let me know that would be great and if it lasts longer and works quicker I will certainly invest! - Ill keep you posted on melationin regime when I hear back too!

 

James

Mon, 09/03/2015 - 13:49
Mr Git
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Justin

I'm surprised the nasal sprays work. The general concensus is that they take too long to get into your system, as opposed to an injection which is almost instant. Have you tried the injections before?

Red Bull - As cold as possible. Suck it as fast as you can through a large straw at the outset of an attack, just before you go on O2.

James

We need to get O2 into our system as fast as possible. A standard non-rebreather delivers at 15 litres per minute. Demand Valve delivers at 200 litres per minute!! There is no leakage and most importantly you can't suffocate if you fall asleep during use.

As an episodic suffering 7 - 8 attacks per day I couldn't cope until I got a Demand Valve. It helped overcome the problem of only being able to inject twice per 24 hrs.

If you PM Val I suspect she may be able to send some information in due course. There may be a slight delay as Val is extremely busy with OUCH work at present.

Sean

 

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Mon, 09/03/2015 - 13:52
Mr Git
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Ok guys, sounds like OUCH are overloaded at present.

Try checking this out:

www.bprmedical.com

Ask to speak with Steve Hathaway.

Best of luck

Sean

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Mon, 09/03/2015 - 14:04 (Reply to #14)
Rano1
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Thanks for clearing up the demand valve question. many thanks.

 

James

Mon, 09/03/2015 - 14:04
JustinF
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Thanks, will follow up with steve Hathaway.

to be honest, the sprays have not been as effective this cycle as in the past. I tried injections a long time ago and I think I might have hone straight into the muscle or something, as was very painful, so it put me off (although worked very quickly)  and at the time sprays were doing the job (I didn't need O2 in the early years of my cycles, but absolutely couldn't do without it now.....as I have the same frequency of attacks). I might have to rethink though. Nose is blocked more often than not and doesn't help with the spray. And really the pain of an injection doesn't touch the pain of an attack....think I just had a bit of a psychological block with it....

absolutely agree on the falling asleep with mask on. I did it once but thankfully managed to jolt myself awake and am very careful to concentrate now (easier said than done when you are into the 5th or 6th attack of the night though!)

Mon, 09/03/2015 - 14:15
Rano1
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Hi both,

 

Apparently Steve Hathaway no longer works for the company but lady I spoke to advised to send an email via their website and they will send information out on costings etc.

 

Hope this helps you Justin

Mon, 09/03/2015 - 14:24
JustinF
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Thanks, yeah I just had the same conversation.

sounds like they are busy too!

 

Mon, 09/03/2015 - 14:30
Mr Git
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Justin

I did that once, I know it hurts, but you get better with practice. Just study the instruction leaflet and vary which thigh. You can also inject into the pinch an inch section of your belly i.e several inches to the side of your belly button.

Injections are by far the better option. Nasal sprays are useless by comparison.

You should, of course, check all this with your consultant before changing any medication. I'm sure Prof will get you sorted.

Sean

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Mon, 09/03/2015 - 14:34
Rano1
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Can't echo Sean' comments enough Justin - Injections are by far the better option - i would be lost without them - I think back to when i was mis diganosed with Migranes and had it in tablet form - an hour of the most intense pain ever!

 

Suggest you look back into it.

 

James

Mon, 09/03/2015 - 15:04
Mr Git
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Sorry guys, I had assumed Steve was still there given he is a Trustee of OUCH, but as you say he isn't.

As you may already know, the guy you need to speak with now is:

Bob Ireland

bob.ireland@bprmedical.com

07841 689826

I will email Bob and try to establish what is the current best price they can do.  

Back in a bit

Sean

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Mon, 09/03/2015 - 16:06
Rano1
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Thanks Sean - very much appreciated.

Mon, 09/03/2015 - 16:46
Mr Git
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Justin / James

BPR have come back to me:

Price details are as follows, and the equipment can be ordered directly from BPR using the e-mail address: orders@bprmedical.com :

Oxygen Demand Valve (UK spec with BS5682 connector), Part no. 831-4003                   £280.00

Exhalation Valve (2 piece consumable), bag of 10, Part no. 828-0045                              £18.00

The device requires a recommended service every 4 years, this can be carried out by any competent medical device trained technician.

Please note all costs quoted are ex-VAT, and are subject to carriage and BPR’s standard terms and conditions.

Full details on the device and associated consumables can be found on our website at:

http://www.bprmedical.com/ultraflow/oxygen-demand-valve

http://www.bprmedical.com/ultraflow/exhalation-valve

Most sufferers opt for the mouthpiece. Having said that, all the mouthpieces users I spoke with are smokers which figures I guess. I used to jog alot and so I used to breath in through the nose and out through my mouth. I prefer the facemask option.

One further complication. You will have to advise your O2 supplier that you are switching to Demand Valve. They will have to provide you with slightly different tanks to accommodate the DV. You need the tanks with a schrader connector. This may involve your GP having to change your prescription slightly, but it's worth it in the long run.

I hope it works for you.

Sean

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Mon, 09/03/2015 - 17:09
JustinF
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Thanks so much for the help Sean, very much appreciated. I am putting my order in today.

have been to gp and successfully changed my tapering to 10mg evey 3 days.

st Thomas neuro dept should be getting back to me with an appointment by end of week. Kings college wasn't available on choose and book, so gp suggested sticking with this appointment for now for urgency and as they are part of the same trust as kings, getting referred internally to the prof....so will go from there and see how I get on.

just got to get my prescription changed for injections and I'm as sorted as I can be for the time being.

best wishes and minimum ch to all

justin

Mon, 09/03/2015 - 17:47
Mr Git
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Justin

I have emailed Juana to see what the problem is and see if I can give you her email address. I know there are numerous other sufferers who have contacted me asking for Juana's details and I told everyone to get a referral via choose and book. I'll see what Juana says and if I can give out her email address I will PM all of you.

In the meantime, I'm concerned that some sufferers might be reading this post thinking they desperately need a Demand Valve but can't afford to pay £300 which is completely understandable. I have gone back to Bob and explained this to him. He is a good guy and came back to me with the following (which he cleared me to publish):

"There are a number of initiatives underway at present which may well lead to the supply of oxygen and related equipment becoming funded routinely by the NHS as part of ongoing Home Oxygen Supply contracts.

The new Scottish Home Oxygen tender, for which the supplier should be decided within one or two months, has the provision of home oxygen for cluster headache patients included in the tender.

BOC have the current contract for the provision of home oxygen in the East of England and they appear to have agreement from the local Trusts to include the provision of home oxygen for cluster headache patients and it may be that oxygen for this indication can be prescribed by GPs in the East of England from April."

Therefore, if you desperately need a Demand Valve but can't afford to buy one don't despair as there is a possibility, and I should stress just a possibility that they may become available in the future.

I guess all we can do is watch this space......

Sean

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Mon, 09/03/2015 - 19:00
Rano1
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Thanks Sean.......be great if it could be funded on NHS as I can understand that some people cant afford £300.As you say lets watch this space 

I would also like to say this £13 is the best £13 I have spent, people on here so friendly and really helpful.

I have been headache free all day so maybe this opticl nerve blocker worked. Or said before am I now at the end of my cycle.......hope so. Being a strong rugby fan I'm looking forward to hopefully having a long awaited beer this weekend watching six nations 

James

Mon, 09/03/2015 - 22:26
JustinF
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Ditto to all (including the rugby!)

any progress with Dr Juana gratefully received....although I'll also keep you posted on my progress with the St Thomas route in the meantime too...

Tue, 10/03/2015 - 07:39
Mr Git
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Hi Justin

Juana has come back to me. You're right, Prof has experienced some issues with the admin team at Kings processing referrals.

Therefore, Juana has authorised me to give you direct contact.  I will PM her details to you.

If there are any other sufferers out there desperate to have a referral with Professor Peter Goadsby and Dr Juana Marin at Kings College Hospital, Denmark Hill, south London, if you PM your details to me I will get back to you.

Sean

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Tue, 10/03/2015 - 09:02
Mr Git
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Justin

You may want to hang fire on ordering your DV today, I may have some more information about them later. New info from another source. Got to leave for a meeting now but will get back to you later.

Sean

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Tue, 10/03/2015 - 09:10
Rano1
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Sean your help and advise is greatly appreciated!!!

Tue, 10/03/2015 - 15:28
Mr Git
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Hi Justin

The situation is someone contacted me this morning and explained there might be a better source for DV's. A source which is more closely connected with OUCH. I took a look at their details. It's a bit complicated, and I can't really explain this at the moment, but certain characteristics of this website suggested to me that it may not be an appropriate time to contact this company.

I have tried today as I wanted to be sure you had all the information to hand. I haven't been surprised that I haven't received a call back from them.

Therefore, it's as you were. If you need a DV asap then I would opt for the BPR Medical option. I believe they are the manufacturers of the product. If you have time and would rather wait to see if anyone gets back to me from this other company, then hold fire.

I have no knowledge of this, but I looked into it just in case there was an angle along the lines of the product might be the same price, but some of the profit goes to OUCH, like a not for profit business.

Anyway, I will report back either way, but BPR sounds like the safe option for now.

Sean

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Tue, 10/03/2015 - 16:04
JustinF
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Thanks sean

will hang fire until I see what end of steroids brings....my bank will thank me and if any profit can be drawn back to ouch then all the better.

i might feel slightly different if worst case happens and back on hourly attacks of course! But let's see. I'm remaining optimistic...

if I can ever buy you a coffee (the black lab in Clapham have the best I've ever tasted) when you are down this way visiting juana or the prof please do drop me a line....I'd love to say beer, but we know that won't be an option!!

justin

Fri, 13/03/2015 - 12:12
Mr Git
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Last seen: 2 years 6 months ago
Joined: 26/02/2014 - 14:34

Hi Guys

I have now spoken with someone at the 'other' company I referred to a couple of days ago.  Their details are as follows:

UltraHighFlow

www.ultrahighflow.com

01707 324193

I ended up speaking with Peter who is a Trustee at OUCH and our research guru.

Transpires my suspicions were correct in that if you buy your Demand Valve from UltraHighFlow OUCH will benefit.

Don't worry if you have already gone ahead and ordered with BPR, but anyone else thinking of getting one may want to hang fire.

Peter will be posting some information about UltraHighFlow on the forum soon. In the meantime, I need to update my acronym list which is very confusing.......ok, instead of going to BPR for my DV I now need to go to UHF, and should I be applying for a PIP or an ATOS????

COGOS

Confused Old Git of Shropshire

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Wed, 18/03/2015 - 11:11
oxfordgarage
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Last seen: 6 years 3 months ago
Joined: 29/01/2015 - 18:18

Ordered my demand valve and paid for nearly 2 months ago and still not recieved it??????? From ultra flow there must be a back order on these getting a bit peed off its not arrived yet ......hopefully soon!!!!!!!

Thu, 19/03/2015 - 20:23
Mr Git
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Last seen: 2 years 6 months ago
Joined: 26/02/2014 - 14:34

Hi

Apologies for not getting back to you sooner, been working away, and I'm sorry that Peter hasn't got back to you either.

Leave this to me. That's not acceptable. I will look into it and get back to you.

Sean

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Thu, 19/03/2015 - 21:32
Mr Git
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Last seen: 2 years 6 months ago
Joined: 26/02/2014 - 14:34

Hi again

I have just emailed Peter and explained the situation. Something clearly appears to have gone wrong.

Either this situation needs to be recovered instantly or, if UltraHighFlow is unable to fulfil the order, we need to ensure that you receive your money back in full so that you can go to BPR Medical and source a Demand Valve direct from them.

I am sure that, in the circumstances, Peter will get back to me as soon as possible. As soon as I hear anything I will get back to you.

Sean

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Tue, 24/03/2015 - 13:46
JustinF
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Last seen: 1 year 10 months ago
Joined: 26/02/2014 - 14:55

I thought I should update here rather than leave unfinished, as it looks like my current cycle has finally finished. Smile
I know that I for one am always looking for similar positive comments on here for a little bit of hope. It is easy to forget when we are in the middle of a cycle that these things do leave us alone at some point (although I'm sorry, I know that is easy to say for an episodic sufferer and unfortunately isn't necessarily the case for chronic sufferers), for however long that may be.
I am also now under the care of a neuro clinic thanks to the help from all at OUCH, and feel more confident of managing future cycles slightly better than I've coped with this one!

Many thanks to everyone for your comments and advice.....It has been an enormous help.

Wishing everyone as much remission and pain free time as possible....

Justin

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