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OUCH(UK) Organisation for the Understanding of Cluster Headache

license been revoked

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#1 Thu, 19/05/2016 - 18:17
Carmen
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license been revoked

Dear fellow members

I have been asked to surrender my license by the dvla with immediate effect due to medical grounds.

I suffer from CH but I would not say they are common or severe. I normally have tell tale signs before I get them 12/24 hours.

When I saw my GP he told me to advise the dvla because of insurance purposes

I will book an appointment to speak with my GP but I was wondering of any of you had similar experiences.

I know that a lot of GP'S are not familiar with CH'S and not sure how to deal with them .

Thanks
Richie

Sun, 22/05/2016 - 22:15
Harrietjt
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This is alarming, given that according to the FAQs the DVLA have informed OUCH that they do not require notification of CH!

Also, PIP Tribunal panels give CCHers a very hard time over the fact they still drive when well enough, and they are invariably very disapproving about not notifying insurance companies.

After the Hearings some people have then contacted their insurance companies who have been completely uninterested on the basis that if the DVLA don't want to know neither do they.

All the Clusterheads I know drive only on pre planned 'safe' routes ie they will always be able to pull over easily...which doesn't take long to do and everyone gets a two minute window in which to do this at the first sign of an attack, which is easily enough time to pull over and stop safely. 

Help OUCH officers......

Harriet

Mon, 23/05/2016 - 16:20
ElizabethK
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Hi Harriet,

Just to let you know we are checking into this, but we do have written evidence that CH is not an illness that needs to be notified to the DVLA.  If we find anything concrete that is different we will be letting everyone know.

take care

Liz

Sat, 15/07/2017 - 23:15
malcolmmole
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If you go onto the DVLA .gov pages, there is a list of notifiable conditions... if you then go onto the drugs and driving .gov pages you will find a list of drugs that prohibit driving.

IF you are not on the DVLA list and take none of the listed drugs.... you have NO reason to surrender your licence

If you take prescription meds that are NOT on the list (most are illegal drugs and legal tranquilisers) and you ONLY take the prescribed amount at the prescribed times, as per the doctors advice, there is a legal defence of taking your prescription properly and it is then not pursuable under law.

in other words.... giving up your licence is a load of bullocks (or somerthing like that).... look at the lists and reassure yourself.

IF DVLA or DVSA are still being awkward you can always take a test again.

Under FULL migraine etc I passed a motorcycle test, motorcycle instructors test and driving instructors test.... you book a "disabled test" (its longer to give more time but otherwise the same) and take it easy... if you get a cluster and need oxygen, you simply pull over... say why and take oxygen.. then continue....... its why they allow the extra time.... no need to panic.

malcolm

read the rules, obey the rules and stuff the objectors......

malcolmmole

Tue, 18/07/2017 - 21:24
malcolmmole
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should have said.....

the only fly in the ointment is the doctor said stop driving.....

ask for a second opinion (not within your surgery) and/ or ask your consultant...... few consultants would recommend such a big lifestyle change unless you really really ought not to drive.

protocol is simple.... if you feel a ch coming on, pull over take the meds / oxygen and carry on when better.... whats wrong with that?.... unlike most drivers we tend to be very aware of being "sub standard" and therefore unlikely to be a danger.

as an extra.... its worth pointing out we tend to use big oxygen cylinders and many taxis and buses are reluctant to take you.... my bus company(s) said a single cylinder is ok but then got funny because its not a tiny one carried by old ladies with emphasema.

malcolm

https://www.gov.uk/driving-medical-conditions/telling-dvla-about-a-medic...

https://www.gov.uk/health-conditions-and-driving       note headache, cluster and migraine are NOT listed

https://www.gov.uk/drug-driving-law         note painkillers with prescription are ok (inc codeine etc)

carry your licence, insurance and prescription tear-off

tell your insurer if you're carrying oxygen ..... but not medical condition if its not listed in above links

malcolmmole

Mon, 24/07/2017 - 09:13
Harrietjt
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Hi all,

https://www.gov.uk/government/uploads/system/uploads/attachment_data/fil...

Page 25 of this document is interesting because for people who loose consciousness it is basically saying it all depends if there is a consistently reliable prodrome. If there is then even those who loose consciousness can drive because the reliable warning enables then to take appropriate action. Surely common sense dictates the warning sign of a clusters attack would be viewed the same way!

 

https://www.gov.uk/government/uploads/system/uploads/attachment_data/fil...

this doc has relevance for those at severest end of the CH spectrum with the accompanying severe levels of sleep deprivation. Having said that, during the months in which we get no more than the odd hour of sleep, we simply don't drive... 

 

I have a CCH friend who has recently had the ONSI. I was really surprised to hear that at the technical training day in advance of the op, ONSI candidates were told that the DVLA require the device to be switched off when driving, on the basis that it causes constant buzzing in the head which the DVLA view as a distraction. It seems the advice was also that switching the ONSI off frequently was likely to reduce effectiveness. I was somewhat taken aback, because when my husband was seriously considering the ONSI we weren't advised about this issue, or that there would be constant buzzing, or other restrictions that I have read in my friend's instruction book. I know I'm a bit of a stickler for people being properly informed.... but really!? 

Harriet.

Tue, 25/07/2017 - 10:12
Val
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Joined: 21/03/2012 - 15:16

Hi Harriet

 

Thank you for the info regarding DVLA and driving, very useful. 

second ONSI,  I had one in 2008 and I've never had buzzing in the head.  I can feel a gentle tingle in the back of my neck and head every few seconds, in fact I sometimes don't notice it at all.  I was never warned about not driving with it on, and would be likely to prompt an attack if I did which has happened on the odd occasion when I have turned it off.   I am under the care of Dr Lambru at St Thomas' who is well aware that I have an ONSI device and I am certain he would have warned me.  I will ask the question of my neurosurgeon just to be sure. 

I will get back to you.

Val.

Tue, 25/07/2017 - 10:40
Val
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Hi all

I would also add that I've checked my handbook and this is the only reference to driving:

"Unexpected changes in stimulation

Electromagnetic interference, changes in posture and other activities can cause a perceived increase in stimulation, which some patients have described as uncomfortable stimulation [a jolting or shocking sensation].
You should reduce your amplitude to the lowest setting and turn off your neurostimulator before engaging in activities that could become unsafe for you or others if you received an unexpected jolt or shock, [eg driving, operating power tools.] ."

I await clarification of my interpretation which is you only need to turn it off if you get an unexpected jolt or stimulation each time you partake of an activity.  I've been driving since as usual since 2008 with the first ONS and since 2012 with my rechargeable version.  I've never had any jolts or unexpected stimulation from my ONS ever when I have been driving, or for that matter at any other time. 

Again, I'll let you know when I have official clarification.

Val.

Tue, 25/07/2017 - 12:52
ElizabethK
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From personal experience, I have ONS and have never received any warning about driving.  There is a disclaimer in the book as Val says about surges, personally, I have taken that to mean that 'IF' I experience this surge then turning the ONS off would make sense so as not to distract, just as you would heed a warning about medication. 'IF' you are affected by it, as in maybe you feel a little drowsy, then do not drive or operate machinery - it make sense!  As everyone is affected slightly differently it may well not affect you.

I have never experienced a surge that has distracted me in any way for anything so far, and I had my ONS in 2010.

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