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KJay3
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Hi im new to here and new to CH
« on: Aug 2nd, 2006, 3:43am » |
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First of all i would like to thank whoever started this site, this as been a life saver for myself and my hubby. My husband was rushed in hospital Two weeks ago due to the doctors thinking he may have had a stroke. He was diagnosed with migraines 13yrs ago but from this last episode he has been diagnosed with CH. Hes now in to his 3rd week of cluster headaches and as had between 2 and 5 a night and day for the last 17days.
I must say this last week as been a rolloer coaster of emotions and finding you all here as been a life saver.
Mark was supposed to be getting oxygen to bring home but then they decided to try imigran inhaler he also has propanalol and several other painkillers that do not work all they do is send him to sleep but he still wkes when he as an attack. We was given no info from the hospital, basically told he has cluster headaches and not migraines, heres a bag of meds go home and cope with it. I came straight on the net to find out what cluster headaches was and on finding out was left pritty shocked. He was given only two of these inhhalers which he used the first night home, i made an appointment to see our GP to get him more meds and all he could say was well thankfully its nothing serious and just take Dihydracodine, fepram, voltrol regular. I was like oh OMG do you know what pain my husband gets in and those do not work, he told me i had no right to look up info on the net, it was nothing and im to involoved. He still wont give him the imigran inhalers we dont have the oxygen and well my hubby is a mess. Im going to try ringing the hospital today to see if they can sort him something out.
I really needed to get that of my chest and im sorry for moaning as im not the one with CH but at the moment my hubby is going through if i dont think about it then it will go away.
Thank you for all the wonderful info here to im still reading through it.
kjay xx
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George_J
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Re: Hi im new to here and new to CH
« Reply #1 on: Aug 2nd, 2006, 4:03am » |
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on Aug 2nd, 2006, 3:43am, KJay3 wrote:We was given no info from the hospital, basically told he has cluster headaches and not migraines, heres a bag of meds go home and cope with it.
i made an appointment to see our GP to get him more meds and all he could say was well thankfully its nothing serious and just take Dihydracodine, fepram, voltrol regular. I was like oh OMG do you know what pain my husband gets in and those do not work, he told me i had no right to look up info on the net, it was nothing and im to involoved.
kjay xx |
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Boy, stuff like this really makes me mad. I've heard it all my life. When the doctor doesn't know squat, he throws the medicine cabinet at the problem, and tries to belittle the patient and his family. Where do they learn this crap?
You have every right to educate yourselves, and every right to act as your husband's advocate. Accept nothing less. The doctor works for YOU.
Your husband needs to see a different doctor--one that won't try to fob you off with ineffective pain meds and condescending attitudes, in my opinion, for what it's worth.
Welcome.
Keep reading, and keep fighting. You guys are doing great so far--I'm sure you'll find something that works for him. Meantime, I'm sure that many others here who are far more knowledgeable than I am will be responding to this post.
Best of luck to you both--you're a GREAT supporter, Kay.
Regards,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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TxBasslady
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Re: Hi im new to here and new to CH
« Reply #2 on: Aug 2nd, 2006, 4:08am » |
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Hi K,
No apology necessary...
There's links to the left of this page. Click on the cluster quiz...it's pretty accurate.
Oxygen is used by alot of us. It's a great abortive and there's no side effects. You may wish to revisit the doc and see if they'll reconsider. He needs an oxygen regulator that goes 12-15 lpm....and a non-rebreather mask.
Unfortunately, the narcotic drugs do very little for CH. In most cases, it results in rebound headaches...these are as bad as the CH. There are plenty of medications to treat CH without using the narcotic drug. If that's all they'll give him, then you need to find a new doc.
Please read the links to the left....print out the information you think you need, and take it with you when he sees the dr.
There's a wealth of information on this site...read all you can.
Stay with us...let us know how he's doing.
Good luck to you and your hubby,
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas! 
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prcole18
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Re: Hi im new to here and new to CH
« Reply #3 on: Aug 2nd, 2006, 6:07am » |
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What the other 2 people said.
Your doctor sounds completely useless & as for saying you shouldn't go on the net to find out more is just crazy.
I saw my doctor yesterday & he told me to bring him any info I could. Your doctors attitude totally stinks.
Sorry to be blunt but this really makes me mad, propanalol etc do not work for cluster headaches in my experience. There is a load of information on this site about medication etc, print it off, take it down there & refuse to leave untill you get the right medication.
Ive got a really good pdf file of info. if you want it pm me with you email address & i'll send it to you.
Good luck & get back down there today!
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| « Last Edit: Aug 2nd, 2006, 6:08am by prcole18 » |
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LeLimey
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Re: Hi im new to here and new to CH
« Reply #4 on: Aug 2nd, 2006, 7:55am » |
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Hello Kjay
I'm sorry you and your poor hubby are going through the misinformation you are going through.
First off tell your GP to look in his BNF (British National Formulary) He will see that the only licensed treatment for CH is Imigran injections, not tablets, not nasal sprays ONLY the auto injectors.
Some surgeries are reluctant to prescribe these on grounds of cost but they cannot thats CAN NOT refuse to give them to you! If they do tell them you will contact your local PCT (Primary Care Trust) who are obliged to overrule them as a point of law.
Having said that, you want Oxygen. Its about the best abortive going especially when used with a ClusterMasx
Your doctor will need to fill in a hoof form which is the form to give your info to your local O2 supplier. If you need any more help with that you can always either ask here OR you can contact OUCH UK on 0161 2721702. Its a helpline manned by volunteers who are all sufferers and very knowledgable. Leave your name an # and someone will call you back ASAP.
You might want to show your GP this site GP Info its part of the OUCH UK site which is very useful. It has all the info on meds available in the UK and the names used in th eUK which can be different to the USA.
I hope this helps, if not, come back and we'll do all we can to get things sorted for you
Take care
Helen
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Bob_Johnson
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Re: Hi im new to here and new to CH
« Reply #5 on: Aug 2nd, 2006, 8:01am » |
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Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Bob Johnson
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KJay3
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Re: Hi im new to here and new to CH
« Reply #6 on: Aug 2nd, 2006, 4:25pm » |
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Thank you everyone so much, im going to re read all the info left again and also print of as much as possible as i go see the GP again in the morning.
I was so upset with how the docyor spoke to me, not so much to my hubby as he didnt really speak to him ap[art from saying oh im glad its not serious of which that was when i blew. Iv spoke to several people since and read much more but really want to know my facts before i walk in so will make sure i have all i need printed for the idiot doctor.
Mark as been insistant that he take all the meds that the doctor as told him to wich consists of 8 Dihydracodine, 6 Declofenac, 8 Nefropan, 2 Propanolol and 1 asprin a day. We have no Imigran or oxygen whatsoever and its looking like we wont get any till friday at the earliest. all the above meds just knock mark out but the clusterheads as you all will know wake him no matter what hes had. so im of to bed for a couple of hours now so i can be awake when he starts and then weather he likes it or not we are back to the hospital. If its the last breath i take i will get him oxygen at least when he uses that he becomes pain free for a short while.
Really want to thank you all again and will keep you updated on what happens
thanks loads and loads
xxkjayxx
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LeLimey
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Re: Hi im new to here and new to CH
« Reply #7 on: Aug 2nd, 2006, 4:38pm » |
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Kjay what is sometimes easier and quicker is to go to your local fire station and use the O2 there. You can go in, ask for it and they will ask questions afterwards, they've always been really supportive and understanding to everyone else who has done that.
Take care
Helen
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TxBasslady
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Re: Hi im new to here and new to CH
« Reply #8 on: Aug 2nd, 2006, 7:21pm » |
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on Aug 2nd, 2006, 4:25pm, KJay3 wrote: If its the last breath i take i will get him oxygen at least when he uses that he becomes pain free for a short while.
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Good for you....you sound like a great supporter. I hope you take Helen's advice....
Lots of PF vibes for your hubby....let us know what you find out.
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas!
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alchemy
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Re: Hi im new to here and new to CH
« Reply #9 on: Aug 2nd, 2006, 9:20pm » |
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Kjay, welcome to this wonderful place. The reason to be here sucks but it's the best place to be with ch's. I'm sorry you guys are going through such a rough time. When I was first diagnosed my doctor gave me vicadin and a pat on the back saying goodluck. Through this place I have gained so much info and so much love and support. Stick around there's someone here 24/7
jim
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RichardN
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Re: Hi im new to here and new to CH
« Reply #10 on: Aug 3rd, 2006, 12:06am » |
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Hi KJay & Welcome
When I came here (2/02), after a year of tests, mis-diagnosis, and non-working meds, I was having 6-8 attacks per day, KIP 5-9, and sometimes 3-5 per night. Most attacks 20-45 min, some up to two hours. Thankfully, my computer-driver wife found this site.
This place gave me a name-for-the-pain and the knowledge and weapons to battle the beast . . . I got my life back. I copied the info off this board, went back to the doc and DEMANDED 02, Verapamil and Imitrex (Imagran). After reviewing the info, he relented on the 02 and Verapamil but (correctly) insisted on a stress test and subsequent heart cath because of arterie blockage . . . didn't have enough blockage for a stint, but enough to make Imitrex (Imagran) dangerous for me, so . . . 02 is my only abortive . . . and it is a miracle for those of us it works for (60-70%).
Also . . . check out the "water X 3" link on the left. I am convinced this has been very beneficial to me and many others.
You have much to read and many questions to ask. Here, the info you and your hubby receive comes from people who truly know his pain.
Welcome to the family.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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kcopelin
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Re: Hi im new to here and new to CH
« Reply #11 on: Aug 3rd, 2006, 12:24am » |
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Oh my gosh, the arrogance of the medical community never ceases to amaze me-and it is cross-cultural! KJay I am praying that Mark gets his O2 and imigran soon. You sound like an awesome supporter and advocate, hang in there-this can be as hard on the supporter as it is on the clusterhead. in some ways.
PFDAN for Mark and peace for KJay!
kathy
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LeLimey
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Re: Hi im new to here and new to CH
« Reply #12 on: Aug 3rd, 2006, 6:10am » |
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Hi Kjay how are you doing today? How did you and Mark get through last night?
I'm only an hour away from you, if ever you want to meet for a coffee or anything just say okay? 
Helen
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mrs mac
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Re: Hi im new to here and new to CH
« Reply #13 on: Aug 3rd, 2006, 5:48pm » |
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hi KJay, am so sorry you and your hubby are having to go through this horrid time just now!!!
i can't add any more advice that has already been given, but just wanted to add my support to you too!!1
as another supporter, just wanted to let you know, that i know what YOU are going through, and if you ever feel the need to speak to another supporter, please get in touch!!!
i really hope that things get sorted out for you and your hubby soon, helen (Lelimey) has given you some real good advice there, and if you get the chance to meet up with her, she will be one of the best people you could ever meet!!!
take care
sandra xxxx
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KJay3
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Re: Hi im new to here and new to CH
« Reply #14 on: Aug 3rd, 2006, 8:30pm » |
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Thanks again everyone, sorry this is the first chance i have had to get online today as we have slept most of the day.
Mark had a bad night he had a couple of clusterheads but before they started we ended up at the local hospital A&E Dept. Due to all the meds he had taken the previous 36hrs he became very lathargic, and sick he also got slured speach so i thought it best to get him checked out and that all started at about 1am. The doctors at the A & E held there hands up and said they had never heard of CH Syndrome (great) and then said anyone takeing that amount of pain relief would feel like that and not to worry cause he shouldnt get a headache that night HUH what is up with these guys, mark was also told he must continue on the meds till he so his GP. What a joke, mark made it clear he wanted a life and not an existance and was not takeing anymore meds. So now hes feeling about normal for him and yes he did still get the clusters through the night. I tryed to contact the doctor at the hospital and im still waiting for him to call me back, its now 1.35am here so cant see him contacting me. We see our useless waist of space GP later today oh and boy do i have some reading for him Hehehe thanks to you guys here.
Helen not sure in which directions your in but think your idea is a good one and would do mark a world of good to. I will get intouch with you sometime over the weekend thank you.
ok im of to catch up on things here at home as weve slept all day nothings got done
will catch up later
love kjay
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TxBasslady
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Re: Hi im new to here and new to CH
« Reply #15 on: Aug 4th, 2006, 1:29am » |
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K,
Start a diary...a record of what he's taken, the dosage, and the time of the day/night he took it.
This just might come in handy, if you can ever find a doc that knows what he's doing.
Bless your heart...
I'm so sorry your hubby is suffering. Please remember to take care of yourself. 
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas!
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LeLimey
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Re: Hi im new to here and new to CH
« Reply #16 on: Aug 4th, 2006, 6:32am » |
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Hi KJay, I've sent you an IM with my phone numbers on it
I'm just ouside Nottingham so as I said, only an hour away (tops!)
Take care, we'll all help you get through this
love
Helen
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