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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> First vist to Neuro
        
(Message started by: mummymac on Dec 22^nd, 2007, 12:20pm)

Title: First vist to Neuro
Post by mummymac on Dec 22^nd, 2007, 12:20pm

I think we are very lucky here in the UK with the cost of medical treatment.

I have been very lucky with my treatments this cycle, my GP has given me a prescription to cover two Imagran Injections a day, after reading on this site about them I asked for them and a referal to the Neuro (last time I only had the tablets) and has given me in advance of Christmas one for 30 Injections to see me through the holidays @ £2.20 for ten shots.

I feel like I am seeing a grade A miracle every time I use one ( or two a Night).

I have seen the Neuro for the very first time this week and he has given me prednisone and verapamil - now day three and I have gone 36 hours with only light shadows ( I did go 24 hours last week with no attacks- so will not count my chickens).

I asked for O2 but he said the tanks size needed was so big as so much was used during an attack and didn't seem to keen, so I did not push my luck.

I also have a MRI Scan booked first week of Jan, although he said they never find anything show up for clusterheads, it was just to eliminate the possiblitiy of there being any think nasty going on

I feel a little bit shakey an hour or two after taken this new medicine . Like my nerves are all trying to go in different directions - has anyone else felt like this?.

My Neuro said he worked with Galaxosmithkline years back when they were developing Imagran also his Senior Neuro was a sufferer of clusterhead aches himself.

I live in a small island called Jersey ( the place New Jersey was named after) and my Neuro has less than 10 people on his books. I knew it was not very common but I was shocked that the propotion was so small.

Wishing you all a PF Christmas

Title: Re: First vist to Neuro
Post by Linda_Howell on Dec 22^nd, 2007, 2:03pm

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

Aw...go ahead, push your luck with the Dr. about 02 ;;D

An E-tank is about 3 and 1/2 feet tall and 15 inches around. They come on a cart that you can wheel around and take up less space than a vaccum cleaner. Honest. You can even get them in a smaller size, although they aren't as practical for aborting more than maybe one HA.

Title: Re: First vist to Neuro
Post by DennisM1045 on Dec 23^rd, 2007, 11:47am

I'm with Linda. Push for the O2! I have an m-tank in my bedroom which takes up one square foot of floor space and stands about 4 feet tall. I also carry around e-tanks for day-time hits. They don't take up much room and aren't a pain in the ass to handle.

-Dennis-

Title: Re: First vist to Neuro
Post by mummymac on Dec 23^rd, 2007, 1:35pm

Thanks for the advise on the O2, this seems to be the choice of most of you so it must be good.

I see my Doctor 2nd week of Jan , I will push for it then if this cycle is still going.

I still need to know if its normal to get the shakes after taking the steriods? or have i finally cracked up

Title: Re: First vist to Neuro
Post by samborambo on Dec 28^th, 2007, 9:51am

i saw this post in a search so i'm not sure if anyone has replied... but do not let the size of the tank deter you from using oxygen. I can't believe your neuro even said such a stupid thing.
The E cylinders are good for 2 sometimes 3 attacks and weigh probably 20-25 pounds
There are also D cylinders which are good for 1 attack, maybe 2 if you are very lucky but i'd say 1. These tanks weigh maybe 10 pounds.
I'm sure you can manage and if you can't they have these little buggies that the cylinder fits into so u can just push or pull it.
All the best in the new year.

Title: Re: First vist to Neuro
Post by Major_Headcase on Jan 3^rd, 2008, 12:52pm

on 12/23/07 at 13:35:43, mummymac wrote:

++++++++++++++++

Mummymac,

RE the prednisone jitters - yeah, me too. My body feels like it's confused (am I coming or going), on edge, and keeps me awake at night ... at least early in the pred cycle, after I get down to about 30 mg/day it gets better.

I too am about to make my first visit to a neuro for CH. This is my 7th year as an episodic, and I've seen 4 different GP's in that time. I finally found a headache specialist in my area that I hope I can maintain a relationship with for years [I go to a local family clinic where the docs seem to leave after 1-2 years so little continuity to treatment - they care but I'm tired of being the one educating the doctor about CH instead of the otherway around]. I hope to finally get some oxygen prescribed (at the right flow level).

Also, contrast your cost of Trix to mine, albeit pill vs injection ... my employer's health insurance company just added new restrictions on Imitrix (oral dose). Previously, a one month prescription was for 9 pills, I paid a $25 co-pay. Now, the maximum I can receive per month is four tablets, and the co-pay went up to $60! I have been getting 100 mg tablets and cutting them in half, and thankfully I never needed a full month's dose before the meds kicked in an got me PF ... still, cutting my available Trix amount under half and more than doubling my cost has me pretty ticked off about my health insurance (again!). Last I checked, my co-pay for one Trix injection was about $95 - no way can I afford that so that's why I'm stuck with pill form ... and why I'm excited to be getting some oxygen!

I hope your visit to the doc goes well and here's wishing you PF days and nights. - John

Title: Re: First vist to Neuro
Post by mummymac on Jan 3^rd, 2008, 2:13pm

Thank you John for your reply.

I am glad I was not the only one getting the jitters. I am off the Prednisolone now, I only had it for 5 days and had four days with no attacks.

Though they came back as soon as I had stopped it.

I am on Verapamil now which seems to have reduced the amount of attacks, but I now live in a hazy bubble were nothing seems very important , I am as chilled out as I have ever been.

I feel ashamed that I can get Imagran injections so cheaply over here whilst so many of you have so much trouble even beeing prescribed them. It is our health service that makes it so. Long live the Queen.

My Doctor said If I had to buy them privately they whould be £73 a pack of two. So I am really thankful that I live in a small Island that has a good health system. Although we differ to mainland England in that we do have to pay £30 a vist to the doctor .