[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.
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!
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