hi all would anyone be able to tell me of any support groups around the midlands,just been diagnosed with cluster after 14 years of pain and wondering what was wrong with me,anyway the doctor has agread to let try o2 but after a three weeks of waiting for some form of contact i am starting to feel angry as to the delay ,(my doctors say they have no idea)as to how long it may be before i recieve my o2 ,so help please any advice would be appreciated with thanks Dave. >:(

Welcome Dave and sorry you had to find us!

I'd check the OUCH UK website and send some of the Brits here (especially Helen aka LeLimey) a PM or an email.

Oliver

hello there,i have looked on ouch a bit ,i even had to tell my doctor about the website as he had not dealt with cluster headaches before!!!!!! so i think i will stick with my neorolagist   lol

In that case I hope your neurologist is better than mine... ;)

Regarding O2...

make sure to read the Oxygen thread at the top of the Medication, Treatments and Therapy forum

Hi dave, sorry you had to find this sight but welcome all the same.
I have sent you a PM, so please contact me if needs be..

All the best Dan

pfd's my friend

[quote author=46464F4913220 link=1226956754/0#0 date=1226956754]hi all would anyone be able to tell me of any support groups around the midlands,just been diagnosed with cluster after 14 years of pain and wondering what was wrong with me,anyway the doctor has agread to let try o2 but after a three weeks of waiting for some form of contact i am starting to feel angry as to the delay ,(my doctors say they have no idea)as to how long it may be before i recieve my o2 ,so help please any advice would be appreciated with thanks Dave. >:([/quote
Hello Dave

I'm Helen and also in the Midlands, East Midlands and Nottingham to be precise (well just outside!) Where abouts are you? What hospital are you under and do you know the name of the neuro you are seeing yet?

If not I want you to go back to your doctor and ask them to make sure you are seeing a head ache specialist neuro. An MS specialist will be about as much use to you as a gynaecologist LOL Neurology is a huge field for such a little area (well, a little area in male cases!!  ;)  )

It is your right under NHS guidelines to see a specialist in your condition which means HA's. This also means there may NOT be a specialist in your immediate vicinity. If this is the case, please ask to be referred to Dr Evangelou at Queens Medical Centre in Nottingham. He is MY neuro and I have enormous faith in him. He is well versed in CH and he is well aware of the use of Oxygen and about OUCH and so on.. I've trained him well! Seriously - I can't praise him enough.

Now to Oxygen, your doctor needs to fill in a HOOF, a Home Oxygen Order Form and fax it to Air Products in Crewe who are going to be your local suppliers (trust me - I know!) I have been to Air Products and spoken with them at length about the needs of ch'ers, they know exactly what to do. Once they recieve the HOOF you will be contacted within 24 hours and receive delivery within 24 hours of that.

On the HOOF your doctor needs to specify a couple of things

He needs to tick the box for ambulatory oxygen, this is so you can have portable cylinders to take about with you, he needs to specify a flow rate of fifteen litres per minute and he needs to write "Cluster Headaches" in the comments box. This ensures they bring the right masks etc when they come to install it for you and to educate you in how to use it safely.

I'm going to pm you as soon as this message is done with my phone number. Please feel free to call to talk, vent, ask questions.. ANYTHING! I'll also talk you through how to use that O2 once you have it and the best little tips I've found myself.

If you want to meet up for a coffee or something I'm happy to do that too! That includes your wife, partner, whatever - they suffer the effects of CH too believe me.

Also, if you need any help with your doctor or they have a question please feel free to give them my number. I'll help in any way I can. I will be out until after school time today but home continuously then from 4pm.

One little point o interest for your doctor - Oxygen is centrally funded which means it doesn't get paid for directly from the practise budget unlike all other prescriptions. Imigran stat dose kits, which are the only licensed med for CH are £56 per kit for the doctors to pay. That's £56 per day that you are entitled to for one med alone.. a HUGE chunk of loot for them! If nothing else, talking cash helps them see the light sometimes!

Have you read up about ice/heat? Red bull or coffee? My little friends the frozen peas?! There are lots of intermediate strategies we can help you with, let me know where your at with finding stuff out and I'll help all I can

Regards - and RING!

Helen

PS This lot MIGHT tell you I'm a witch.. they're sort of right but they don't spell it proper! LOL Don't make me come and find you!

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

If i were you id stay here, you get the best advice and interact with people all over the world and they dont charge to post on the message board!!!!

THIS SITE RULES!!!!!

PFD TO ALL!!! :D

darknight wrote on Nov 19^th, 2008 at 6:38am:

If i were you id stay here, you get the best advice and interact with people all over the world and they dont charge to post on the message board!!!! THIS SITE RULES!!!!! PFD TO ALL!!! :D

That is an unfair spin. This site is priceless but it isn't a fair comparison.

There is an annual membership fee if people want to actually join OUCH and use the forum (this isn't unusual in the UK, many organisations do it) but you don't have to join to get all the information you need which is also posted out to anyone who isn't online, you don't have to be a member to call the Helpline anytime for support, you don't have to be a member to go to any of the meetings, download info, ask questions etc etc etc.

Membership fees are a thorny issue and it was a really hard decision the OUCH UK BOT took but they had no choice if they were to continue offering the services. Some agree with it, some don't and I know OUCH US don't charge but they don't do all the things OUCH UK does which cost a great deal of money.

Although all the work including the Helpline is done by unpaid volunteers it costs a lot to train them and run the line, telecoms aren't free and every person who rings or emails and asks gets a great deal of information sent to them. The Helpline is more important than any of you can possibly imagine, it has literally saved lives and made many other lives more bearable over the years and donations just don't cover costs I'm afraid

That is why it is wrong to directly compare OUCH US and OUCH UK, they are different, they do different things in different ways and each is good in its own way.

There is a policy decision here to keep everything free and I am sure DJ and Mrs Deej use their own pockets a lot, but if OUCH US and ch.com decided to offer what OUCH Uk does, I expect their donations wouldn't cover it either.
They might as there are many more people here, but the UK is small and the CH population who contribute also too small to pay for everything.

W

davedmk wrote on Nov 17^th, 2008 at 4:19pm:

hi all would anyone be able to tell me of any support groups around the midlands,just been diagnosed with cluster after 14 years of pain and wondering what was wrong with me,anyway the doctor has agread to let try o2 but after a three weeks of waiting for some form of contact i am starting to feel angry as to the delay ,(my doctors say they have no idea)as to how long it may be before i recieve my o2 ,so help please any advice would be appreciated with thanks Dave. >:(

Just noticed your ID Dave

I suspect Helen may know exactly where you live so has the detail spot on but if your ID means you are in Milton Keynes, I live less than half an hour from you! That also means you are the same 02 Home delivery service as me too and ours are BOC Vitalair who are wonderful.

There shouldn't be any wait for the 02- once the correct HOOFs are sent off (they can fax them in) you ring BOC and tell them what you want and it arrives the next day. In 5 years I have NEVER had them let me down.

W

well said Wendy!!!!!! OUCH UK and this site are completely invaluable to CH sufferers and their supporters, and we shouldn't be slagging either of them off!!

If it wasn't for DJ and Mrs Deej, and the OUCH BOT and helpliners, there would be far more suicides in the US and the UK

Please people remember the real reason we visit sites like these!!!!

and let's be totally realistic here £10 a year isn't exactly a huge amount specially when you take into accoubt the return you get  for it!!!!   :-/ ::)

sandra

forgot to add davedmk, if you need any further advice please don't hesitate to phone the OUCH UK Helplne the number is

01646 651 979, just leave a message and a contact no and one of the volunteers will phone you back

take care

Sandra