yet another new poster, but an old sufferer
yet another new poster, but an old sufferer
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!
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