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Cluster Headache Help and Support >> Cluster Headache Specific >> 6 days in http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1391824812 Message started by maz on Feb 7th, 2014 at 9:00pm |
Title: 6 days in Post by maz on Feb 7th, 2014 at 9:00pm
Just need to rant. I'm only 6 days into this episode and already reaching the end of my tether. Having 4 - 5 attacks a day at k8 and only allowed 2 sumatriptan injections.So thats at least 3 a day that I have to get through without help.
My legs are sore from sticking myself with needles, my eye is permanently red, I've got toothache and a sore cheek bone, and it feels like I've been punched. I've got a permanent k3 in between the big ones and a small bald patch where I pulled out my hair. I have suma pills too but they do diddly sqat, and the energy drinks only work for the mild ones and leave me feeling nauseous and bloated for hours. I swear you could scour out the fuel tanks of an air bus with that stuff. [smiley=hurl.gif] I know 6 days isn't long. I really don't know how you chronic sufferers survive. I'm just praying for the end to come soon, but if past experience is anything to go by, prayers don't get answered to often. Maybe I was evil in a previous life ! OK rant over. Maz. |
Title: Re: 6 days in Post by lwatson8 on Feb 7th, 2014 at 10:47pm
Maz,
If ranting is what it takes go for it. I know from your posts that you are a strong person and I can tell from this one that you are in a lot of pain. I have been in the same situation as you and have gotten through it. I would encourage you to take a look at Bob Johnson's post on pain vs suffering. It helped me to frame what is and was happening. If there are things that you think one of us on the board could help you with, please ask. I don't know how things work in England, but I'm wondering what it would take for you to get oxygen? It was a god send for me and though insurance would not cover it here. It was not very expensive. If you need the particulars for this there are many here who would jump at the opportunity to help. Just go ahead and rant and know that I'm thinking of you, wishing you well, and that there are people all over the world to help and support you. Lars |
Title: Re: 6 days in Post by japanzaman on Feb 7th, 2014 at 10:50pm
I've found that those energy drinks can often result in rebound headaches that last almost all day and hover in the kip 3 range too. Try ditching those things, as they're probably only making your situation worse rather than better.
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Title: Re: 6 days in Post by Bob Johnson on Feb 8th, 2014 at 2:38am
What are you using as a preventive?, what dose?
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Title: Re: 6 days in Post by maz on Feb 8th, 2014 at 4:49am
Thanks guys,
The only prevent I have is indomethicin which I am sure is not the right drug for my type of HA. It didn't work for my last cycle, but my neuro insists it's what I need and said I hadn't taken it properly. So this time around I'm giving it another go, but now, on day 7, there is still no relief. Hoppy suggested I take a sumatriptan pill before bed, and so far I have slept through the night, but I've woken at 7am each morning with a humdinger, so my first injection gets used early in the day. It's a long day to face with only one left. I've never been offered verapamil or oxygen. I wouldn't have even known about it if it hadn't been for my friends here. It's the weekend now so no doctors available here till monday so I'll call them then but I know I won't be able to see my own GP as it takes 2 weeks minimum to get an appointment. She's pretty good but unavailable. I will have to see the duty doctor and they are always the youngsters sraight out of med school who need a bit of work experience. They don't have a clue. I will ask for oxygen but I swear I'll punch him if he tries to send me away with paracetomol. If all else fails my son has a friend who's a welder. Thanks for caring Maz |
Title: Re: 6 days in Post by maz on Feb 8th, 2014 at 4:58am
Where will I find Bob's post on pain versus suffering. I can't find it. Can someone send a link or give me directions. Thanks.
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Title: Re: 6 days in Post by Hoppy on Feb 8th, 2014 at 6:30am
Hi Maz,
Call OUCHUK on 01646 651 979. They will sort out the oxygen for you very quick. Also they can help you with all your other :question. Hoppy. |
Title: Re: 6 days in Post by maz on Feb 8th, 2014 at 8:01am
Thanks Hoppy. Just phoned them and they were very understanding, but they said I still need a doctors prescription for the 02. Guess I'll just have to wait till monday and hope for the best.
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Title: Re: 6 days in Post by AussieBrian on Feb 8th, 2014 at 8:42am maz wrote on Feb 8th, 2014 at 8:01am:
This gives you plenty of time to collect the proper medical papers to present to your doctor so you receive exactly the O2 prescription you need. Our good friends here at ch.com can give you properly documented documents to help your GP make an informed decision. Hoping for the best is one thing. Stamping our little foot and making certain informed demands may get us little further, but it dinkum makes you feel better in the morning. |
Title: Re: 6 days in Post by maz on Feb 8th, 2014 at 10:18am
Thanks Guiseppi
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Title: Re: 6 days in Post by Artworks on Feb 8th, 2014 at 10:22am
O2 is definitely worth getting, it is a lifesaver for me and many others. Also, look into taking your Sumatriptan injections in smaller doses. Many CHers have indicated that 3 mg, and even 2 mg injections are enough to abort attacks. Try it. If 3 mg works, that will give you 4 doses per day instead of two. And if 2 mg works, you get six doses per day! I am using 3 mg, and that's good enough to abort.
If you are using an auto-injector, you'll need to take it apart, but there are resources on the web for this. Google should get you there. Best wishes to you! |
Title: Re: 6 days in Post by maz on Feb 8th, 2014 at 2:55pm
Thanks Mike. Will do.
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Title: Re: 6 days in Post by Hoppy on Feb 8th, 2014 at 3:15pm
Hi Maz,
Did you get the "HOOF" form (home order oxygen form) from ouch, to give to your doctor to sign? Hoppy. |
Title: Re: 6 days in Post by maz on Feb 8th, 2014 at 3:35pm
No but I can print one off to take with me. Thanks every one for your advice. I've said it before - what would I do without you all.
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Title: Re: 6 days in Post by LasVegas on Feb 8th, 2014 at 4:31pm
Hi Maz,
Sorry to read your cycle just began, that sucks! :'( You have been offered some great advice about Pain vs Suffering, and o2. Have you considered the anti-inflammatory vitamin regimen? It has proven amazingly helpful for most CH'ers who are consistent following protocol. I would suggest you try it! The worst that can happen when taking this vitamin regimen is you become more healthy. Of course the best thing that can happen when taking the vitamin regimen is that it reduces frequency, minimizes intensity of each attack and ultimately breaks your cycle. As you've learned quickly, this website will provide you with the best education about CH's compared to any resource worldwide. You probably understand by now that most people do not understand CH's, in fact most doctors do not understand CH's. What does this mean to you? You must be a self advocate and educate yourself moreso than relying on others, even the so called medical professionals. So please do some reading and also feel free to ask questions, rant your vents, be supportive to others, etc day or night, 24/7. Lastly, hang in there! You are not alone! You have a wonderful support group here on this website who truly understand your pain and also your suffering! Wishing you PFDAN! ;) -Gregg in Las Vegas |
Title: Re: 6 days in Post by maz on Feb 8th, 2014 at 5:29pm
Hi Gregg
I've actually been on the full D3 regimen for over 7 months now. Have had a few PM's with Batch, and after 60 days I was well on track. I was going to see if I can get another blood test before I contact him again, so I can tell him where I'm at. I must say I'm feeling dissappointed as I had convinced myself that it would put an end to my CH. I have not had any infections or colds or anything that would use up my D3 and leave me vulnerable, so I don't know why it's not working. I guess nothing will work for everyone. I've bought it all in vast quantities so I will keep taking it anyway. At least I didn't catch a bad cold when absolutely every one around me had it. Every cloud............. Maz |
Title: Re: 6 days in Post by LasVegas on Feb 8th, 2014 at 5:50pm
Hi Maz,
Sorry to read that it's no longer effective for you. Sounds like you know what you are speaking of referencing a cold, etc and D3 reserves. In my opinion, waiting on a blood test to tell Batch where you're at might not be in your best interest, to wait, don't wait, contact him and tell him your vitamin protocol and i'm confident he will steer you in the right direction that's helped so many of us. Good luck! ;) -Gregg in Las Vegas |
Title: Re: 6 days in Post by DennyM on Feb 8th, 2014 at 9:59pm
G'day Maz
So sorry The Beast has found you again! Best of luck with the oxygen. I hope and pray that being armed with all the right bits of paper will open doors and cut the bureaucrap for you. Aren't the people on this site wonderful? Please say G'day to Len from me and tell him you're both in my thoughts and prayers. Love Denny |
Title: Re: 6 days in Post by maz on Feb 9th, 2014 at 3:58am
Hi Denny
Thanks for your kind thoughts. Sometimes I think the bureaurcrap is more frustrating than the CH. But yes, the people on this site are the best ever. Looked at our photos yesterday and had another good laugh over the soaking we got. Talking of soaking it has rained here for 2 months solid, and thousands of people have lost thier homes due to floods. Roads and rail lines have been washed away too. Fortunately, apart from a new "swimming pool" in the garden we have not been effected. It's not been very cold either. Take care, and give our love to Brian. Len says Hi. love Maz. |
Title: Re: 6 days in Post by maz on Feb 10th, 2014 at 10:25am
Hi every one
An update - I am now on day 10 of this cycle and indomethicin is still not working. I tried to get a Dr appointment but impossible to see anyone for at least 2 weeks. But I must have sounded desperate because one of the doctors phoned me back. He was not some one I've met before and sounded quite young. He agreed that my neuo's diagnosis didn't quite make sense - That I have TAC, not clusters, because clusters IS a TAC. He told me he knew the basics of clusters but was certainly no expert. So, I told him what meds I have and how they worked, and said I wanted to try oxygen on the advice of every one here. He queried my request for 15 - 25 ltrs till I explained that you have to hyperventilate and then it acts as a vasoconstrictor, just like the injections do but without the drugs. And he took on board the kind of mask I need. He said he couldn't understand why "this neuro bloke" hadn't suggested it long ago, and he signed the form immediately. WHAT A STAR !!! He did warn me though, that the suppliers are a nightmare to deal with, so not to be surprised if I had trouble getting the initial supply. So that will be my next hurdle, but at least the wheels have been set in motion and if there are no problems I should have my 02 by the end of the week. He also said he thought a support group like this was a brilliant idea ( not like my neuro who said you would all mislead me). Thanks every one for all your support. |
Title: Re: 6 days in Post by Rumeke on Feb 10th, 2014 at 11:02am
Sounds like you have a winner there! An open minded Dr is getting hard to find. Good luck with the O2...it saved my sanity!
Judy |
Title: Re: 6 days in Post by Mike NZ on Feb 10th, 2014 at 2:24pm
Good news Maz, that is the first step you needed to getting O2 sorted out.
Even if the supplier is a pain just keep getting in contact with them until you get what you need. The effort of a few phone calls is nothing compared to what oxygen will do for you. In the UK the cylinders often come with a built in regulator which will only go to 15lpm. So if that is what they are offering then take that to get it in hand and then work to see if you can get 25lpm. |
Title: Re: 6 days in Post by maz on Feb 17th, 2014 at 4:51pm
Another update. Got the 02. YEAAAAAAAAAAAY. The standard 3 day delivery took 7 days,(well, this is England after all) but they brought the correct mask and the guy took the time to show me how to use it. Only 15 ltrs per minute, and he told me they don't go higher than that, but hopefully it will be enough. So now I just have to wait for my next visit from the beast to try it out. The way things have been I shouldn't have to wait too long. Yesterday I had 6 daytime visits and 3 during the night. One was only k3 but all the others were k8, so the arrival of 02 was timely. Only had 2 today at 9am and 3.30pm., and the 02 arrived at 4.30. Wish me luck.
Maz. |
Title: Re: 6 days in Post by Mike NZ on Feb 17th, 2014 at 5:30pm
Best wishes in being converted to someone who will be telling everyone else to get oxygen based on how well it works for you. Then the next step is for your O2 kit to gather dust as your cycle is over or you get your preventives working really well.
Spend time working out how it works best for you. Have you worked out how to make the gear mobile, so you can throw it into a car or similar? |
Title: Re: 6 days in Post by maz on Feb 17th, 2014 at 6:08pm
Hi Mike,
The guy said it could be taken in the car. Also, with 2 weeks notice they will deliver to any address in the UK, so I will be ok if I want to visit family up north, or in the west country. Maz |
Title: Re: 6 days in Post by japanzaman on Feb 17th, 2014 at 8:33pm
The key to O2 is get on it fast and keep huffing until you are absolutely sure the beast is back in his cage. Results are not as good if you let the headache build up to Kip 6~8 before getting on the oxygen.
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Title: Re: 6 days in Post by maz on Feb 18th, 2014 at 11:42am
Well, I'm pleased to report the 02 has worked a miracle. Had 4 attacks through last night and it knocked them all out. I didn't get much sleep though as there was only an hour between each one. I've now used half my supply already, so I will order some more tomorrow as the suppliers do next day delivery.
It's just as well they do as I have spent 2 days chasing a prescription for my sumatriptan, which was cancelled because the COMPUTER decided I was over prescribed. Can you believe that.!!!!! Maz. |
Title: Re: 6 days in Post by Mike NZ on Feb 19th, 2014 at 6:00am maz wrote on Feb 18th, 2014 at 11:42am:
Really good news that O2 is working for you and that it is effective at 15lpm. Time to get a handle on how much you're using so you can ensure that you've always got enough on hand so that you don't run out or risk running low. Remember to account for long weekends, especially for times like Easter. |
Title: Re: 6 days in Post by maz on Feb 19th, 2014 at 5:26pm
Mike, thanks for the advice. I had already thought about weekends, but had forgotten about times like easter, which is a 4 day close down here in england. I will have to ask if extra supplies are allowed without another prescription, at times like that.
Thanks also japanzaman. The slightest tickle and I'm on it. [smiley=thumb.gif] |
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