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#1 Fri, 02/01/2015 - 06:17
Janewhitzend
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Last seen: 5 years 9 months ago
Joined: 02/01/2015 - 05:37

Hello just joined

Hi

Just rejoined after a few years away. I was diagnosed with chronic refractory migraines several years ago and OUCH was kind enough to help me through that and many of the treatment processes.

My condition has worsened lately and my neuro is currently investigating. The possibility of additional headache disorders such as CH etc.

It's s slow process and I feel between a rock and a hard place at the moment. Imigran jabs help a great deal but I'm limited to 4-5 packs a month, which I am trying to sort out, having recently moved and changed GP's is making it more complicated too.

Probably like most of you I could do with some decent sleep too and find this time of year particularly hard to cope with, as my attacks worsen and become more frequent.

as I have tried verapamil, lithium DHE, anti epileptics etc previously and didn't respond I am hoping I will be able to try 02 in the near future to control my attacks better. 

In the past my neuro offered an assessment for ONS but as I have twins on the autistic spectrum, I felt that it wasn't a option I wanted to persue even if I could pass criteria and funding issues.

I have had permanent Horners for 6 years now..can anyone else advise if this causes constant eye ache in them? 

At this point it's a comfort to know I can talk to people who understand the severity of the my illness...it can be a very lonely place at times Wink

 Jane

 

 

Fri, 02/01/2015 - 17:47
Mr Git
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Joined: 26/02/2014 - 14:34

Hi Jane and welcome back :)

Your condition sounds extremely complicated. Have you contacted the Helpline in the past?  Even if you have, it might be worth giving them a call again as there have been a number of developments regarding treatment options in recent years.

Do you have a good neuro consultant, is it someone on the 'good guys list'?

Is there a medical reason why you are limited on the Sumatriptan?  I do hope it's not a budget issue. Have you tried the generic version by Sun Pharma?

I suspect someone with more experience of complicated conditions will be better positioned to advise you. In the meantime, the Helpline is there if you need it.

Sleep is in short supply for many of us, it's a difficult one. I have found something which works for me, but I doubt it would be appropriate for others.

I wish you all the best with it.

Keep smiling :)

Sean ;)

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Fri, 02/01/2015 - 18:06
ElizabethK
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Last seen: 5 days 16 hours ago
Joined: 26/02/2014 - 14:26

Hi Jane, welcome back Smile

Fri, 02/01/2015 - 19:56 (Reply to #3)
Janewhitzend
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Last seen: 5 years 9 months ago
Joined: 02/01/2015 - 05:37

Hi...*waves at Liz*

yes I have spoken to the Helpline recently and as usual they were very helpful.

The restriction on injections is because the current diagnosis is CM and triptans are advised to be used less frequently in that case ..not sure how I will juggle that issue if I get a dual diagnosis though. 

I am seeing my neuro team on tues..yes they are really good and I consider myself extremely lucky to have a fab and caring team on my doorstep.

I found out about gammarcore and plan on speaking to the neuro about this too.

Things are quite up in the air at the moment so until I have more info regarding a new diagnosis I feel a bit *eek*...of course it's possible my CM has just decided to ramp things up to make like 'more interesting' Wink

 

so long since I have been in a forum I am not even sure if I am replaying in the right place! Apologies if not..

Fri, 02/01/2015 - 21:24
Mr Git
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Joined: 26/02/2014 - 14:34

It must be a bit like trying to unravel Christmas lights Jane (I can't imagine where I came up with that analogy :~).

And yes, you did reply in the right place :)

I hope you're in the hands of The Prof and Juana. Not sure whether it would be relevant for you but I have found that the Demand Valve has made a significant improvement in the treatment of my CH.

In the final analysis, the best treatment for CH is.......knowledge and experience!!

Hang on in there Jane, help is at hand ;)

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Fri, 02/01/2015 - 23:40 (Reply to #5)
Janewhitzend
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Joined: 02/01/2015 - 05:37

Christmas lights just about sums it up..I like that!

I did visit the London Clinic in the past but am based in the Midlands so go to the Specialist clinic in Stoke on Trent..brilliant team.

I am asking about the possibility of trying O2 when I go next week..just been reading up on the demand valve but will most likely forget again.,so saved the leaflet...lol..

ongoing to try bed now ..wish me luck..

 

 

Sat, 03/01/2015 - 09:24
Mr Git
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Joined: 26/02/2014 - 14:34

Brendan is one of the 'good guys' so you are in safe hands there.

A Demand Valve is about £350 (or it was when I got mine several years ago). The cost may have come down now. When completing the necessary paperwork you need to be sure to ask for the cylinders with the Schrader connector. I believe that has to be stated by your neuro. Air Products (or whatever they are called now, I can never remember) are used to this as I am in the same area, and as I was one of the earlier users the engineers were keen to come in and see it in action. They were far more impressed than when they had seen my 'do-it-yourself' extra large reservoir bag (Mike's invention). That had them rolling around the floor laughing!! :D

We need a *waves at Liz* emoticon! :bigsmile:

Sean ;)

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Sat, 03/01/2015 - 20:29 (Reply to #7)
Janewhitzend
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Last seen: 5 years 9 months ago
Joined: 02/01/2015 - 05:37

Hi

 

yes he certainly is, plus they have a (now) full time specialist nurse on board too, who is wonderful. I see her more because she does my Botox regularly. I have a very smooth forehead! Am sure my scalp is wrinkle free too but I can see that bit. 

i can't understand why people have it for cosmetic reasons because it makes your skin feel like cardboard...not unpleasant or a nasty proceedure (unless you are needle phobic) but very odd.

Am still trying find out if people with permanent Horners find their eye aches all the time..or whether this is classed as 'shadows' . I am wondering if the eye ache is something I am expected to have or part of an attack that lingering. I can cope with it but would love to know for my own curiosity. 

where would be the best place to post on the forum to ask please?

hope you are keeping well..I slept well last night once I got to sleep..always a big bonus Wink

 

jane

Sun, 04/01/2015 - 13:16
Mr Git
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Joined: 26/02/2014 - 14:34

Hi Jane

I see that nobody has come back to you yet regarding your query about Horners/eye ache. I'm afraid I have no knowledge of this, but just to let you know that you have posted your query in the correct area of the forum. Hopefully, as things start getting back to normal, someone with relevant experience may get back to you.

Just to explain the lack of response, if you have been away for a couple of years, you may be unaware that OUCH has a Facebook page as well. A number of sufferers post on that, dictating that the concentration of experience is somewhat diluted. I don't know if you are a Facebook user, but if you are you may get a quicker response on Facebook.

I don't want to discourage you from using the forum, I just thought I would try to alleviate any frustration you may have from the lack of response.

I hope you find the answers you're looking for.

Sean

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Mon, 05/01/2015 - 08:36 (Reply to #9)
Janewhitzend
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Last seen: 5 years 9 months ago
Joined: 02/01/2015 - 05:37

Hi Sean

 

Thanks for the reply, I will post to the Facebook page and try there.

I thought it was quieter in here than I remembered but wasn't sure if the FB page was for people newly diagnosed etc.

 

thank you for your replies and insight , hope you are as well as can be expected .

Jane

Mon, 05/01/2015 - 12:45
Phil
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Last seen: 4 months 5 days ago
Joined: 26/02/2014 - 17:02

All the members of the forum are sufferers or supporters, a lot of us are in bout at the mo and probably not getting much sleep.
It may be worth repeating questions that aren't answered: Especially when they're part of a long post, I know my concentration span is down to about 15 seconds.

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