Migraine club

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Migraine club

Post  Senna on Thu May 06, 2010 3:42 am

Yesterday I went to see my neuro in London. Also, separetely but in the same hospital, I was to have theinjection in the back of my head later the same day. I will write more about medical side in another post, but this visit was amazing from another point of view:

Because they overbooked, unusually, there was a long wait in both waiting rooms connected to the Neuroscience Departament.
Everybody was tired despite pain and discomfort, as nurses and doctors tried to cope with the situation. Still people were encouraiging each other, joking and trying to deal with the discomfort of long wait. Fortunately I was not in much pain - but I was very, very tired due to the long car/train journey etc. so like others, I was not too happy about the wait,at first.

Until suddenly someone said something, some little joke then we all began to chat with each other, and instantly a great atmoshere developed. People were exchanging their stories, their experince about pain, and about how little understanding, or help for the pain they got, until they have come to "this place".

The most frequent complain was, that generally GPs did not treat their condition (migraine, hemiphlegic, or cluster h/a) seriously, dismissing it like an ordinary h/a - nothing to worry about.
Most people said that it took them ages, even after referal to a neurologists who also refused to treat them seriously; so many neurologist know nothing about migraine!
I was shocked by this; they just take scans (scans will not show migraine anyway but they were looking for tumours, or stroke) then they say "you are fine, there is nothing wrong with you" and dismiss people. Scandalous lack in medical education.

WE were all so eager to tell our stories, and suddenly I realise it was just like this forum here, except that we were all there in person, all from distant parts of UK. One thing everyone agreed was, that at last we were in the right place. That was good to know.

The exchange of ideas and informations was priceless. The atmosphere was electric.
BY the time we were being called to see our doctors, people were almost reluctant to leave this little Migraine Club. WE were all thrilled to have a chance to exchange experiences and learn from each other, ask questions about treatments, what worked, or not etc.

WE also agreed that those of us who had it, benefited well from the injection to the occipal nerve at the back of the head, so it was great to have such confirmation. Some of the people were having it done on the same day (like me), so we met later in the next waiting room witho other people waiting, and the same thing happened.
WE carried on talking, but mostly during recovery time since after injection we had to wait at least half hour before being allowed to go home (because of danger of dizzyness).
WE all supported each other and I also talked with some partners, or families who were there and asked how it affected them, and hopefully offered them some support and expressed appreciation for their understanding of what M is all about.

One man had tears in his eyes saying how little he can do, so I said that the fact that he was there, that he did try to understand and care so much about it, was the best help he can give to a M sufferer. He was so relieved and grateful that he could talk about how he felt, he said. It was an amazing experinece and something that I will think about for some time. It also made miss my counselling practice a lot.

I just wished there was something like this locally, so people could do that more often.
I wish I had more energy to start a "Migraine Club" for people with M. There are such groups in extistence for other conditions and talking, is a great relief.

I will give it some thought - I have had good professional training in group therapy, so I know how helpful such groups can be, and this experince reminded me of the importance of such groups. My own M are definitely more under control lately, but I have other health issues which makes me think that alone I could not handle the responsibility of running such a group right now.
It is tempting though, so many people need help and moral support and when you have chance to talk face to face, you are in an ideal place.
Have you ever, or are you tempted to do that, I wonder.

Senna

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Re: Migraine club

Post  sherri b on Thu May 06, 2010 6:38 pm

I have often thought of having a migraine support group. I was very interested in your post because I thought, being a suffer, I had nothing to offer. You have showed me I do have something to offer. Just listen!

Now I have to decide if I could handle the responsibilty of a group. I too suffer ALOT. sometimes more than 27 days per month. But then, I suppose there would be someone else available after the group got going who could do it when I was out.

You see so many other support groups out there. But no migraine groups.

Thanks for the post, it has encouraged me alot.
Sherri B!
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Re: Migraine club

Post  Senna on Fri May 07, 2010 7:32 am

You are welcome Sheri, yes, we do have something to offer: life of experince of dealing with our bodies, doctors, medicines - and general pain of living with this condtion. IT is amazing how just talking about it lifts your spirit.

It is such a lonely condition, not even people who love us can understand how it feels to live with it day by day, have you life ruled by pain, by avoiding pain, by realising what it is doing to our lives.

It really, really was wonderful to talk to each other about it.
I think you are right - the resposibility of running support group can be shared.

Something occured to me as well - that it might be a good idea to ask other support group by calling them about how they first started, and to ask for any tips about what to do, what not to do when running support group.

BTW my injection worked very well so my head is fine, no pain, but I am so far behind with other things I neglected that I need to get back to do some more jobs in teh house etc.

One more thing; by helping others, you will also get helpf - it is a two way street.
If you are well organised, and do not rush into things - just keep writing down all ideas - you will soon get a plan.

Good luck and keep it in mind
I hope your head is not too bad today
Senna

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Re: Migraine club

Post  sailingmuffin on Fri May 07, 2010 10:05 am

Hi All,

I am a member of a pain support group that meets once a month. It is extremely helpful. Everyone in the group has either a pump or stimulator. Still, it is a great place to sort of share information and talk. We do other stuff too- make "goodie bags" to hand out at the hospital at christmas, some talks relating to pain, and some other activities. I am glad to be a part of it and wish there were more like it.

Pain free days,
sailingm
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Re: Migraine club

Post  Senna on Fri May 07, 2010 2:32 pm

Thanks for your feedback, SM.
When you have a free moment, can you please tell me how did you start your group?
Where did you meet.
Where do you meet? Things like that...

I also think it is important to get the right people to l be commited to be positive when they can, and perhaps prepared to share tasks to keep things going, when others can not . Otherwise groups easily loose momentum, then quickly fall apart.

Any of your ideas, experiences would be very helpful. Thanks.
Senna

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Re: Migraine club

Post  tecky on Fri May 07, 2010 3:33 pm

Senna,

A migraine support group sounds like such a wonderful idea. I wonder how it could be accomplished in a rural area, like where I live, where there's not much population density to support it. I guess that's why Ronda's works so nicely for me.

I'd like to know more about your occipital injections sometime if you have time. I've had facet injections which didn't give much relief, but I think occiptal might be just the answer.

Thanks so much for sharing with us! flower
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Re: Migraine club

Post  Senna on Fri May 07, 2010 4:14 pm

Yes, groups in rural areas can be a problem, Tecky.
I also live in a rural location, however I realise that what is rural in England, is nothing like the great expanses you are use to (and you can't imagine how romantic Montana sounds to the European ears!). But it is true that even here, we must rely on a car transport, and people can still be spread far away from each other, so looking to find enough people with the same issues, and then agreeing on a meeting place, can be a problem. And then keeping the momentum going as well.
But this does not meant that it is impossible.

(I also belong to the creative writing group and a photo-group, so I know it can be tricky - but still possible if people are motivated enough).
Of course with the health issues to deal with it is even more difficult.

About my Injection:
I got an information sheet with my apt so I will try to follow some of it it in order to get it right.

Greater Occipital Nerve Injection.
GON injection involves injecting a small does of Lidocaine and steroid methylprednisolone around the greater occipital nerve at the back of the head, at the top (and to the side) of the neck at the base of the skull.

This injection can provide temporary relief in two out of three cases of few weeks, sometimes considerably longer. The frequency and severity of h/a might ease for much longer period.
Also benefits can vary from one occasion to next for the same person, but the success depends often on finding "the right spot" where it feels most tender for the injection.
I was lucky this time - he hit it just right, I knew straight away.

The doctor feels the area pressing hard to find the most tender place.
I have tried to do it myself just before seeing the Dr feeling this area with the tip of my nail to see where it hurts most (as it is a small spot) and so when he tries to establish the spot I knew exactly where it "hurt most" and was able to guide him.

The injection itself was not a great deal, as he rubbed the area with anesthetic, I did feel a little dizzy which is not unusual apparently, so all patients were told to rest for about 1/2 hour, I was fine after that. Any h/a was gone instantly and completely. Feels great.
Next day I got a bit of swelling and the back of my head felt bruised but still no head pain.
It was y second time and that last time (September) it worked for me for several weeks.

I was told I can have it done every 3 month if I need to, just call my neuros secretary.
Sorry it is late here and my eyes are closing,
but if you want any more info I will be happy to help.
I will look in tomorrow.

Hope your head is not too bad today Tecky
Senna



There is no point to give injection at a time when h/a are in remission.

Senna

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Re: Migraine club

Post  tecky on Fri May 07, 2010 4:23 pm

Thanks, Senna!

During one of my facet blocks, they gave me a lidocaine injection prior to doing the facet blocks. The lidocaine injection killed the migraine pain right away (the best anything has), but it came back the next day. The facet block did nothing. I'm wondering if the combination of lidocaine and methylpredinisone might make it last longer.
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