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Cluster Headache Help and Support >> Getting to Know Ya >> New on here but suffered for 10 years http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1348823779 Message started by madsurfer365 on Sep 28th, 2012 at 5:16am |
Title: New on here but suffered for 10 years Post by madsurfer365 on Sep 28th, 2012 at 5:16am
Hi Guys an Gals
I have been suffering CH for 10 years now and its been 6 years since official diagnosis. The attacks started randomally and lasted about 6-8 weeks with a ramping up and down over that period and this occured once a year to two years. The doc tried me with imigran and sumatriptan nasal sprays they seem to help at first. Now my attacks have up'ed there game a little and happen bi-annually and lasting 3-4 months in duration, even the meds have stopped working or the nasal spray postpones the attack. I have finally seen a (suposedly) specialist (10 years later) to be told the same i've been told ten times over by my GP, he wants me to try Direct injection (Suma) and Oxygen theropy, but also wants me to go onto beta blockers (Propranalol) which i have concerns about as i already have low blood pressure?? the only good thing is i have finally been refered for a CAT Scan. Any Advice or gut feelings on the above |
Title: Re: New on here but suffered for 10 years Post by wimsey1 on Sep 28th, 2012 at 7:50am
Hey there, madsurfer, and welcome. It sounds as if your doc is at least somewhat familiar with CHs. The suma injections are right on...pills are too slow, and even nasal sprays take longer than an injection does. Read the imitrex tip at left. O2 is the way to go, but I am concerned with the phrase "oxygen therapy." That sounds as if it's a COPD type use: low flow, nasal canula, etc. That will be useless. You need a high flow regulator (at least 15lpm, but 25lpm+ is better) and a good nonrebreather mask, one that lets in no room air at all. The key is to inhale as much 100% pure O2 as possible as quickly as possible. Many of us, myself included, have found we can abort most attacks within 3-5 minutes. Chugging down an energy drink right before hitting the O2 and then huffing the oxygen seems to help as well. blessings. lance
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Title: Re: New on here but suffered for 10 years Post by Bob Johnson on Sep 28th, 2012 at 8:35am
Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.
CLUSTER HEADACHE HELP AND SUPPORT › GETTING TO KNOW YA › NEWBIES, HELP US...HELP YOU ========== If you are not in the U.S., are responses can't be tailored to your local medical services. |
Title: Re: New on here but suffered for 10 years Post by madsurfer365 on Sep 28th, 2012 at 9:01am
Hi
sorry thats just how the doc put it, i'm currently in the process of waiting for the letter to get to the GP from the specialist (i'm in the military, we have to wait) I'm from the UK and have been to see about 8 -10 diferent doc's and this one seems to understand the problem and has experience in dealing with it, she refered me to the specialist to confirm everything was right and to see his response the course and meds she had me trying over the past year. Now i'm waiting to go back and start getting the new meds but currently inbetween cycles so will have to wait till the new year to see if either or all has any effect on me My only real concern is the suma injections, since the nasal sprays and hit n miss whether they work or not, if they work they only postpone the attack till later that day and it bite back with a vengance. |
Title: Re: New on here but suffered for 10 years Post by madsurfer365 on Sep 28th, 2012 at 3:38pm
Cheers for the PDF it makes sense reading it, I have heard a lot about verp and my doc also mentioned it at our last meeting will take the PDF with me and show the doc
The O2 hopefully will be prescribed but being in the military that has big repercussions about my career within the military :'( If it works tho, pro's n con's I have been on ouch uk site and got a lot of info and help from it. Join here for another source of info and help if required and to see what meds are going around as the USA usually get newer meds before UK so can get a general consensus if they work |
Title: Re: New on here but suffered for 10 years Post by ttnolan on Sep 28th, 2012 at 8:08pm
I still think O2 is the best abortive agent out there. Fast and no side effects... you are back to doing what you need to in 10 minutes. I can completely hide my CH with O2, disappearing for 10-15 minutes every once in a while was never a problem at work...
As for getting it prescribed... you might consider your own set-up with welder's O2. I would spend my last dime to secure an oxygen supply... it can change your life. |
Title: Re: New on here but suffered for 10 years Post by madsurfer365 on Oct 22nd, 2012 at 5:55am
Well been the docs this morning and had a good chat
She has prescribed the injections and verapamil, however I'm out of my cycle right now so when should I start the verp as the doc hasn't mentioned it? Downside she is point blank refusing to prescribe O2 even though the letter from the specialist has listed it. not very happy about that Also anybody else having ECG's every 2 weeks for the verapamil ? |
Title: Re: New on here but suffered for 10 years Post by Kevin_M on Oct 22nd, 2012 at 7:26am madsurfer365 wrote on Oct 22nd, 2012 at 5:55am:
It's good she prescribed while you're out of cycle, time to stockpile the injections. You should check back with a call to your doc about the verapamil, but it's used to prevent hits. If you're not getting hits, there is no use for it now. When a cycle starts, you can get on it right away though, without waiting for a doctor's appointment, so it's good to have. She should have given you a schedule about how to take it, too, ask about that. There's a graduated way of increasing it until an effectivve level is reached, such as 120mg a week, something like that, and up to a certain level. Quote:
It wouldn't seem needed until you are taking it. She might want to check you at intervals as you ramp up for the first time to see if it is safe. I had one the first time I got on it, to see how things were going. Increasing and decreasing gradually is important. Thereafter, my doc might check every year, things came out consistently okay, or he might check whenever I needed to sustain a high dosage for long periods. It's a good precaution, each doc can be different, some may wish to monitor closely as you first take it. There can be side effects the first time. All of mine gradually disappeared with slow increments when increasing or decreasing. At high doses, I know I might feel like a car driving with some low air pressure in the tires, but I don't stay there long. |
Title: Re: New on here but suffered for 10 years Post by madsurfer365 on Oct 22nd, 2012 at 5:33pm
Yes buddy I have a schedule for the very but it's slightly high then you think
It starts with 3 80mg tablets per day for 2 weeks then increases to 2 80 and 1 160mg per day for 2 weeks, then 1 80mg and 2 160mg per day for 2 weeks until a maximum daily dose of 960mg is reached |
Title: Re: New on here but suffered for 10 years Post by Kevin_M on Oct 22nd, 2012 at 6:06pm
I see why the ECG's. Good you have a schedule to go by when you get back into cycle.
Remember though, your doc is willing to go with verapamil up to the certain level of 960mg. This does not mean that much will be needed. You're increasing increments every two weeks. If you get to the 480mg level and things are okay that may be sufficient. If at 480mg things are almost okay, adding an 80mg increase might be all you need. You will have two weeks to know at that time, but no need to take more than is needed. This is stuff you talk about with your doc. I mean, it's not automatic you will get to 960mg. My doc had seen me back in a time when I'd tell him about being on the floor pleading with God, you know, when things were bad. He had me take a bunch of tests and was musing the results over in a folder when he asked me how I was doing on the new verap we had started. I said, "seems to work, my feet are swollen though and I feel a bit tired." My test results must have been okay because he closed the folder and said, "Get outa here, take a hike. I got people waiting that are sick." It's his bedside manner telling me I'm fine. He knew it was a big improvement and it was comparatively a LOT less to be complaining about. He took my pain seriously, this was not pain, small potatoes. So I took a long walk to go fly a kite off a short pier, and in time the side effects went away and I had my first time with a prevent that worked. :) You may have a similar experience when you use it. Next up, oxygen to work on before your next cycle. ;) |
Title: Re: New on here but suffered for 10 years Post by madsurfer365 on Oct 23rd, 2012 at 3:29am
I hear all the good about, happy about trying it however, you have all stated start either with the attacks or just before?
I'm currently just coming out of a bad bout and the next ones aren't due for a few months now and I'm worried that starting the verp now will have no effect for a few months then I will be on nearly the full dose and have no idea at what level they started working and what should be my maintenance dose for the future, massive pro I should have no attacks but we will see |
Title: Re: New on here but suffered for 10 years Post by ttnolan on Oct 23rd, 2012 at 5:33am Kevin_M wrote on Oct 22nd, 2012 at 7:26am:
You must always consult your doctor, we can't know all that she has in mind for you. That said, for clusters it is ramped up at the first sign of cycle start, and then ramped back down after it ends... Bob Johnson wrote on Sep 28th, 2012 at 11:57am:
madsurfer365 wrote on Oct 23rd, 2012 at 3:29am:
You are right on here... you can't know where it becomes effective if you are out of cycle... makes no sense. |
Title: Re: New on here but suffered for 10 years Post by Kevin_M on Oct 23rd, 2012 at 6:41am madsurfer365 wrote on Oct 23rd, 2012 at 3:29am:
This is not what I'd believe your doc intended, like tt said, makes no sense to go to the full length of the schedule and be at 960mg while out of cycle. There'd seem to be some communication missing about that, however, you are ready for the next cycle. Essentially you've visited your doc who prescribed what to take and how to take it, but as with most doctor's instructions, it could be understood to "take as needed". You know what to do and how to do it when needed. Stockpiling some trex is a good idea for now. Yes though, keep an open line to the doc if you have any feedback while taking verapamil via the ECG's and such. At this point it is even unknown if it will be effective. There'll be some side effects and most likely if it does work, you'll find effectiveness somewhere below 960mg/day. It would be unnecessary to go beyond your effective level, which can vary, but your doctor is willing to go to that level before saying it doesn't work. Remember oxygen can be a very handy for any imperfections with a plan, especially an untested one. And while it may work, things don't go smoothly all time. ;) Best of luck to you and stay close by. :) |
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