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Another newbie

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#1 Thu, 12/03/2015 - 16:01
Shep1138
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Joined: 05/03/2015 - 16:13

Another newbie

Hello everyone. 

My name is Mike I'm 28 and recently  diagnosed with ch. I feel a little better knowing I'm not going mad. I've been having trouble for a while Having attacks that lasted two or three day. However I am in the longest bout I've ever had. so far I've been off work for six weeks I'm getting 3 -8 attacks a day. It's driving me up the wall, how ever I have to give praise to my gp who picked up on it being ch as soon as I described the attack in December. This bout started back on the 5th of Feb I booked in with my go and She put a referral through Stright away and prescribed imagran injections and ordered O2 for me as well. I saw the neurologist on the 5th March who's given me 240mg of varapamil a day. Just hope they kick soon. I've got a follow up on the 20th and just hope they calm down soon.  The name cluster headache really isn't fitting for the pain we go through. I can't stop laughing at the people  hear the name and  can't resist saying "oh I get headaches as well". The thing that run through my head I really shouldn't put down in words. 
Anyway I wanted to say hi and if anyone has any tips in dealing with the pain or if anyone has any key signs that their  bout is coming to and end. or any advice really. I would love to hear from you.
 
Thanks Mike 

Thu, 12/03/2015 - 16:57
Rano1
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Joined: 03/03/2015 - 19:21

Hi Mike,

 

Welcome to the family, best thing you have done is join...I only been here over a week and people so helpful and friendly!

I have had this over 12 years but got diganosed correctly about 4/5 years ago.

This has been the longest cluster I have ever had and yes it gets you own!!

I have no doubt that Sean will see this post and he will give you some great tips to get rid!

For me Prisdelone gives me relief while on high dose, once I taper down there back. I did have an optical nerve blocking injection last week and the headaches have been less frequent and less intense.

 

As other people will say make sure you get regular ECG's on Varapamill! And from speaking with the helpline I do not think 240MG is high enough to combat CH.....but get it from them directly rather than me. Give them a call.

Val is great too.

 

All the best James

Thu, 12/03/2015 - 17:39
JustinF
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Joined: 26/02/2014 - 14:55

Hi mike

and welcome.....similar story for me too.bsugfered for over 10 years, diagnosed properly 5 years ago. Had previously spent small fortune in chiropractors, osteopaths, etc, and seen countless gps and tried every pain killer a going.

im episodic, every 1.5-2.5 years roughly...so am lucky to get some decent remission in between. In the past triptan nasal sprays worked to abort the attacks and they were generally only at 2am and 2pm during cycles. However, this recent one started December 17th, followed normal pattern until jan 20th, disappeared and then came back 2 weeks later very angry. Since the. I've had attacks every 1-2 hours throughout night every night, several in the day and lots of shadows too in between.

02 has been a saviour (am in the process of buying a demand valve for it and trying to switch from sprays to injections too as I hear they work more quickly)....and after weeks of that the gp have me prednisolone for some short term relief, which gave me 5 pain free days until an attack late last night after starting to taper off them.

im still waiting for a neuro appointment until I can consider other treatment, but like all of us am hoping it goes by itself in the meantime! In answer to your question though, I don't get any indication of when it will go. I just know (hope!) that it will one day...and I can still just about remeber what it's like without them...can't wait! I've missed 4 weeks of work in this cycle so far , something I've never had to do before....but the employer is understanding...for now anyway....and I am itching to get back. You can become a bit of a prisoner unfortunately.....been making sure I try to fill times between attacks with lots of walking in the fresh air and all those annoying menial jobs I've been putting off at home...any distraction is good! 

i couldn't advise what medication to take of course, everyone is different and I'm no doctor, but the above is keeping me just about sane for now!

the support here at ouch is fantastic. They understand so well what we are all going through and if you feel the need to call the helpline I would advise it. I had some helpful words from Andy myself last week and Sean also has been a life saver with advice here. Has given up lots of time to help me get in touch with all the people I need to and just generally had sound advice all along.

my neighbours must hear me talking to the beast at night and the odd bit of general groaning. I'm surprised I haven't been carted off yet!

anyway, welcome to the site. I'm sure you'll get plenty of help and advice and reassurance here...

hope you're pain free very soon!

justin

 

Thu, 12/03/2015 - 19:50
Shep1138
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Thanks James and Justin thanks for the warm welcome it's good to know that their are people out their who understand and are goin through the same thing. 

James is the injection that you had direct into your head? I read about it. how did you find it? I'm glad that it's reduced the pain for you I hope it stays that way and finally gives you a rest. And the other drug is that a steroid? My neurologist mentioned it at my last appointment. She also mentioned building up my dose of varapamil. 

Justin I know what you mean about keeping busy between attacks I've been trying to keep busy doing little jobs, I have a little boy and an amazing wife who both keep me going. I'm with you I want to be back at work and back to normal. My little man keeps me on my toes. I agree with you about the O2 I find that sometimes that it stops the pain progressing. Te injections are a good back up for the really bad ones and it works fast. I get a really odd sensation of pins and needles running Through my head. But it really does help. 

 

ita great to know that their are people out ther to speak to 

thank you for the warm welcome 

 

mike 

Thu, 12/03/2015 - 20:31 (Reply to #4)
ElmaA
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Last seen: 5 years 1 month ago
Joined: 26/02/2014 - 14:55

Hello Mike  and welcome,

pleased to read that your G P has been a good help to you,

this site will also help you a lot ,sound advice , also so good to share with the only people who understands what you are going through,

People who say"bad headache " yes I get that, now I just smile sweetly and say .... I wish ....

small tips for the pain , some try red bull, my favourite is if I can at the early start I take a strong coffee,it has worked for me if the pain mild , wet cloth pressed hard.

what a lovely little boy you have, bet he keeps you busy,  lovely.

take care and good luck.

ELMA

Thu, 12/03/2015 - 21:02
Rano1
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Last seen: 5 years 6 months ago
Joined: 03/03/2015 - 19:21

Like you Mike I have a young son and a very understanding mother and partner. 

Two weeks ago I was running at a ch every 6 hours which was not normal for me. Was heavily overdosing on injections and was very stressed over it. Dr answer was to give me Valium obviously had no affect on ch.

luckily I had (by absolute chance) a neurologist appointment arranged for next week so I called him and explained the situation. He had me in that day to have the injection. 

How was it you ask....well I'm a rugby boy but the site of a needle makes me weak at the knees lol. But I can tell you it's nothing a slight prik and its done. Dentist for a filling is far worse.

i must tell you thou I did increase my steroid usage the day before I this injection so unsure if it was that or the steroids or both that put a brief stop.  I'm tapering down, currently on 30mg and a few odd ones but have managed to get rid with just oxygen which I have not been able to do before. Have always needed the injection.

i am seeing neurologist next week and will ask for nerve blocker again if still having them.

remember u can only increase by. 80mg per week on verapamil. And make sure your Dr does your ecg every week.

 

hope this helps a little

 

we are all in it together

Thu, 12/03/2015 - 21:09
Rano1
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Joined: 03/03/2015 - 19:21

Sorry should say yes it's in the back of your head...you never see the needle thou. Don't watch any videos on you tube as I'm sure that will put you off if your anything like me lol.

Sean tips is as Elma says. A cold can of red bull through a straw (I haven't tried that yet) and get on oxygen straight away with ice pack on your neck.

im looking into this demand valve that everyone seems to be discussing too, it does cost at the moment.

again hope this helps

Mon, 23/03/2015 - 21:53
Shep1138
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Last seen: 1 year 10 months ago
Joined: 05/03/2015 - 16:13

Hey again sorry I've not been online for a few days. 

I've had all my meds increased after my last visit to the neurologist as well as putting me on steroids. I'm not getting any major attacks whilst on them but getting strong shadows around the time of my attacks. just wondered if anyone else gets this? 

Elmaa I tried the red bull I think I drank it a little late but it seemed to help get back to my normal self after though. My little lad and wife are amazing the really do keep me going.

 

rano 1 - I'm inteaged by the injection sounds a little scary but I'm open minded if have no joy with this bout ending then I might bring it up with my neurologist. I've read a bit about the demand valve  again another one that catches my attention. Just not sure about spending the pennies on it. 

 

Dose use anyone use the demand valve and how do you find it?

 

again it's great to know you guys are out their as a support.

 

thanks mike

 

Fri, 27/03/2015 - 18:45
Rano1
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Joined: 03/03/2015 - 19:21

Hi Mike,

undortunatly the injection didn't work for me. Apparently only works for 50% of people.

i tried melatonin regime and it defo reduced volume and ferocity of attacks. Give it a try 

 

I think I have just come out of my cycle well fingers crossed anyway. It's been the longest ever at 13 weeks.

hope you get relief soon

James

Fri, 27/03/2015 - 20:16
Mr Git
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Last seen: 2 years 6 months ago
Joined: 26/02/2014 - 14:34

Hi Mike/James

The key is having the right neurologist to manage your treatment plan, and the critical word is 'manage', as opposed to just trying various options.

The Demand Valve works brilliantly, but only as part of the correct treatment plan.

James - as I believe I mentioned to you, don't be disheartened by the GONB not working this time. As I explained, it's a lot to do with the skill of the person who administers it. I travel a 400 mile round trip to have Juana do it for me, for the simple reason that I want to give myself the optimum chance of it working.

As ever, we have to be determined, resourceful and prepared to go the extra mile to achieve the objective.

Best of luck

Sean

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