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Cailin
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Nov 21st, 2011 at 7:57am
 
Hi I'm new to this site but I'm glad I found it. I live in Galway Ireland I have had these headaches for about 10 years now they have gotten progressively worse for years but nobody believed me they just  told me to get on with it. I was diagnosed by a neurologist about two months ago and put on isoptin and imagrin nasal which didn't work that well so he changed me to topomax and imagrin injections that works well but my life is hell. I had to drive to hospital screaming all the way because I couldn't take the pain any more they were great and saw me as quickly as possible, it took nearly 4 hours to get rid of the pain with oxygen and a cocktail of drugs, every day is like torture. I have two small children one is 3 and the other is only 20 months I wait till they go to bed and then I just collapse in pain it's no life my marriage is in a heap because all I do is hold my head in pain I can't do anything I try to function but once the children go to bed that's me done for, I make their dinner after I get in from work but I can't keep going like this. How do other people going? Does anyone have advice to hand out because I need help?
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wimsey1
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Reply #1 - Nov 21st, 2011 at 8:23am
 
Yes, there are effective ways to treat this, and as others will tell you, O2 is actually the best abortive around for many. The O2 you were given in the hospital was probably less effective for a number of reasons: you were not given a complete nonrebreather mask, but rather a mask with open valves that mixed the O2 with room air; you were given too low a flow; and you had no idea what the proper techniques for aborting hits were. Please read the tip at let on O2 and then ask questions.

Sumatriptan injections are good for rapid aborts but some believe they can cause rebounds. Still, they do work. Read the Imitrex tip for how to stretch out the Rx.

Long term preventatives, including Topamax, are vital. You might want to explore Verapamil and Lithium as well. I am currently taking 640mg/day of Verapamil.

Energy drinks can help the O2 abort a hit, like Rock Star, Red Bull and Monster. REad, read and read some more. Then take notes and ask questions. We're here to help. God bless. lance
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Guiseppi
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Re: New member
Reply #2 - Nov 21st, 2011 at 9:03am
 
Welcome to the board. A normal life is certainly possible while a Cluster head, but it takes an aggressive approach, a desire to manage CH instead of letting CH manage you.

Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis.  I use a 3 pronged approach to manage my CH, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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Imitrex nasal spray and injectables are very effective abortives. The imitrex nasal didn't work for you, I'm glad they tried the injectables with you. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go to the medications section of this board and read the post "123 pain free days and I think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Consider visiting this site:

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It has a lot more "area specific" advice for CH treatment on your side of the pond.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe
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Cailin
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Reply #3 - Nov 21st, 2011 at 9:09am
 
Wow

thank you so much I will look at all that info I really appreciate it nobody understands the pain I'm in or the frustration that it causes for me not to be able to function for my family I'll look at that stuff this evening when I get home from work thanks again!

am so glas I found this site

Belle
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Guiseppi
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Reply #4 - Nov 21st, 2011 at 9:10am
 
We'e glad you found us. No one here will ever tell you to stop your whining and take an aspirin! Wink

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Andy T
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Reply #5 - Nov 22nd, 2011 at 8:06am
 
Hi Cailin

You've clearly already had some good advice, and I can't emphasise enough how much you need to take it. Our NHS is a very mixed bag in relation to their understanding, or even interest in CH. If you want to get the very best out of them, when you're doing your research, print it off. Take it with you to appointments, its strange but I've found the guys on here and similar sites have a better understanding that the Neuros and definitely than the GP's!!!
My Neuro was very responsive to my making this input and has been very helpful, I'm now on a better regime and my GP has clear instruction, from the neuro, what to put me on the minute an episode starts.
Bottom line, there is a life to be had, even though, in the depths of a severe episode it may not seem like it.

Pain Free Wishes

Andrew
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clusternewbie8
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Reply #6 - Dec 8th, 2011 at 1:37pm
 
Hey Guys!
I'm a new member as well. I started getting cluster headaches last spring 2010. Over the past year I've had multiple CH ones where I am able to go about my day with not too much pain to the ones where I m woken in the middle of the night crying hysterically to the point where I want to go to the hospital but know that it would be a waste of time.

I've finally come to the conclusion that drinking beer is no bueno.. It needs to come off of my list of drinks. Also my CH are stress related as well. My CH all started when I got a divorce from my husband in the spring of 2010. I haven't been to a nuro doctor only to a regular doctor who has put me on Sumatriptan 100MG. It seems to be working for the most part. It makes me feel really funny in the face and body.. also very sleepy.. I work on it.. (kinda work) Its really hard to pay attention.

My CH start off feeling like sinus head aches. my ears will start to burn then it will move to my eyes the pressure on my eyes are unbearable it will move to my nose and cheek bones. After that the flood gates open and either I take my medication or I'll have a very very bad day. I've tried to do the Water X 3 .. it really doesn't seem to work for me. I try to get ideas to stop this before it begins...

any advice is always helpful.
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Tate
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Reply #7 - Dec 8th, 2011 at 6:33pm
 
Hi there,

You are funny! Love the beer no bueno. Unfortunately, beer no bueno for me either and boy do (did) I love beer! Smiley

You will have many wise and educated cluster folk responding with well thought out and thorough advice for you. I just wanted to say that I share your headaches and am always here if you need to vent!

I would start with getting to a specialist so that you can get some oxygen and a plan of action.

Best to you!

Tate
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Linda_Howell
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Re: New member
Reply #8 - Dec 8th, 2011 at 6:47pm
 
Hi and welcome Cailin,

I'd just like to add something to the advice already given.

From what I understand of how things work in your part of the world, the UK is reluctant to prescribe oxygen if you smoke.  This of course is ridiclous as we are far more cognizant of the dangers than most and are responsible enough to not light a cigarette while anywhere the 02.   If you are a smoker, do not tell them that.  02 is a life-saver for so many of us.  Besides a preventative such as Verapamil or Lithium to make the headaches milder and less often...02 and Imitrex are the abortives of choice.

Stick around, ask questions and read, read, read around here.    Kiss

Linda
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deltadarlin
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Re: New member
Reply #9 - Dec 8th, 2011 at 7:29pm
 
clusternewbie8 wrote on Dec 8th, 2011 at 1:37pm:
Hey Guys!
I'm a new member as well. I started getting cluster headaches last spring 2010. Over the past year I've had multiple CH ones where I am able to go about my day with not too much pain to the ones where I m woken in the middle of the night crying hysterically to the point where I want to go to the hospital but know that it would be a waste of time.

I've finally come to the conclusion that drinking beer is no bueno.. It needs to come off of my list of drinks. Also my CH are stress related as well. My CH all started when I got a divorce from my husband in the spring of 2010. I haven't been to a nuro doctor only to a regular doctor who has put me on Sumatriptan 100MG. It seems to be working for the most part. It makes me feel really funny in the face and body.. also very sleepy.. I work on it.. (kinda work) Its really hard to pay attention.

My CH start off feeling like sinus head aches. my ears will start to burn then it will move to my eyes the pressure on my eyes are unbearable it will move to my nose and cheek bones. After that the flood gates open and either I take my medication or I'll have a very very bad day. I've tried to do the Water X 3 .. it really doesn't seem to work for me. I try to get ideas to stop this before it begins...

any advice is always helpful.


Is your headache on both sides 9at once) or just one?
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clusternewbie8
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Re: New member
Reply #10 - Dec 8th, 2011 at 11:51pm
 
My CH it's all over. From the front of my face to the top of my head and the pain runs down the back of my neck
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Cailin
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Reply #11 - Jan 4th, 2012 at 3:25pm
 
Hi

my headache is really bad lately after a really good start with topamax I have slowly began to sink back into a chronic daily migraine again which leaves me drained and then bang bang every night at 1:14 on the button comes the b*****d that lasts for 1 hour and 16 minutes exactly then goes away and comes back at 4:36 on the button for 48 minutes and then again at 6:30 for 34 minutes. Every night without fail without break night after night after night am going back to neuro next week he says he will stop them somehow. He has tried several things but they have all failed. I don't take anything anymore but sometimes the injection sometimes not doesn't seem to matter what I do they always come if I take the injection I'm just stoned and it doesn't seem like it's happening but it is. I wish I were dead sometimes but I don't either, worst things ever these headaches, no rest constant pain in my head all day every day with daily migraine then all night agony, I'd like to know who I p****d off in a former life to get them!
Am drinking litres of water to avoid kidney stones from topmax don't know what else I can do really oxygen is not really an option in Ireland unless you have a lung condition I think then they pipe your house but they don't provide it for CH it's hardly even recognised as a condition. Will just have to see what the neuro does and hope he comes up with something it is costing me an absolute fortune in doctors fees and prescription costs and I'm still in constant pain all the time which hardly seems worth it at all

Hope the rest of you are having a better time than me! Cry
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