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Cluster Headache Help and Support >> Cluster Headache Specific >> i dont understand http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1268591056 Message started by pls1115 on Mar 14th, 2010 at 2:24pm |
Title: i dont understand Post by pls1115 on Mar 14th, 2010 at 2:24pm
i been in cycle for three weeks now they put me on prednisone 4 mg doses started with 6 the first day then 5 the 4 and so on yesterday was my 2 dose day and the attacks came back today the shadows are back and neck pain. im also on topamax i dont think any of it is working now what do i do now please give me advice i cant see the specialist till september and im scared. this i my third cycle. the first i blew off just thought i had bad migrains. the sencond went to boston and was diagnosed. now this cycle im leaning about it and i now know alot but mot enough and my neuro knows nothing. i think ive learnt more than him. i have 1 imitrex pill left and my insurance wont cover it till april 1st and my injections cant be filled til march 27th. im scared and the hospital will be my resort. ive tried for the o2 but have been unsuccessfull thus far. i get 5-7 attack in 24 hr periods. i think the prednisone only hid the beast for 4 days. any suggestons will help me. paula
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Title: Re: i dont understand Post by Guiseppi on Mar 14th, 2010 at 2:50pm
Hi Paula. Prednisone works one of 2 ways, for a small percentage, it will end the cycle. For the rest, like you and I, it masks the attacks, but as soon as you go off, they come back with a vengeance.
Until you can get in to see the doctor, you should try downing an energy drink at the first sign of an attack. I use sugar free Red Bull works well for me. On the bottom left tab of this board, look at Clusterbusters, these are alternative methods of dealing with the beast. Joe |
Title: Re: i dont understand Post by Dollyhair on Mar 14th, 2010 at 2:54pm
Hi Paula, sorry to hear you're having such a bad time with the beast. I'm not sure of your medications as I haven't been on those, but I have been on Verapamil in the past and have found it helped me. A lot of people drink a cold Red Bull at the very onset of an attack and find this gives them some relief.
You say you have tried 02 unsuccessfully, were you on the right flow per minute? I have used 02 for the first time in 20 odd years for this cycle of mine and have found it to be lifesaving for me. I'm sure there will be others that will jump in with other treatments that I haven't been able to try. Wishing you some PF times very soon. Take care, Caron |
Title: Re: i dont understand Post by pls1115 on Mar 14th, 2010 at 6:38pm
im unsuccessfull at obtaining the o2 at the moment i am seeing a specialist in september in boston. my neuro i have now is not very familiar with these headches as he calls them. ive tried to educate him myself and he is relentless to my tries. ive asked for the preventives and he gives me doses that are not touching my needs or the requirements of the clusters i dont know what to do now till i seek the help in september. im at a dead end i think. im calling him tomorrow im asking for suggestions of you guys now for him i will ask for verapramil now and a higher dose of prdnisone i was only on 5 mg doses and i started with 6 pills then 5 then 4 and so on. the topamax is 25mg pills 2 times a day but seem to be in affective too
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Title: Re: i dont understand Post by pls1115 on Mar 14th, 2010 at 6:48pm
this is my third cycle too. im episodic. the first cycle only lasted about 6 days not so bad. exactly a year later in july my 2nd cycle came when i was on vacation in miami it lasted 13 days and thats when i was diagnosed. i came home and went to boston and they then told me i had cluster headaches. i still did not know i would have them agian and again or it was a disease. it was this year when it happened again and i was like oh no what is going on and i found you guys this site and the information i longed for. im so thankful i found this place it is my home away from home. well im 33 a mom of 4 and a sufferrer.wooohooo. i did find a specialist but like i said i cant see him till september and for now my neuro doesnt help much im at a dead end and in so much pain i get 5-7 attacks a day and the night is my worst. i wont sleep. during the day i sleep an hr. here and there. i have neck pain and everything else that im sure your all familiar with. so thats it on me sry to babble on thanks paula
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Title: Re: i dont understand Post by Skyhawk5 on Mar 14th, 2010 at 9:50pm
What reason did the Dr give you for not giving you the O2? If the Dr and/or you have fear of home O2 use. O2 is NOT a bomb. The following is a quote from my "Oxygen Patient Instuctions":
"Oxygen will not explode or burn, but will increase the flammability of objects near the concentrated oxygen." Don |
Title: Re: i dont understand Post by bejeeber on Mar 14th, 2010 at 10:16pm
Hi Paula,
Well its not uncommon for CH sufferers who find relief to have "gone around the doctor", since non headache specialist neuros like yours are often ignorant to put it politley, and headacahe specialists often don't give a hoot about you and will make a CH sufferer in the midst of an episode wait months for an appointment. So.....besides echoing the suggestion that you check out clusterbusters (people have found major relief going that route), y'know some folk just get their O2 from a welding supply place without prescription. I've seen many reports here about it being the same O2 you'd get at a medical supply place. |
Title: Re: i dont understand Post by PhareCamp on Mar 15th, 2010 at 1:21am
it can be soooo frustrating when doctors act so patronizingly. it gets my goat when they give us the hysterical female treatment. If at all possible I change docs asap if I run up against it. the best doc i ever had took the time to research my condition and never patronized me. It was so hard for me when he retired. my current doc, though not perfect, seems to understand my condition and since I'm active it helps to have a doc familiar with sports medicine too.
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Title: Re: i dont understand Post by Bob P on Mar 15th, 2010 at 8:12am
Based on your pred dosing, you were probably using a Medrol Dospak. CH can also be prevented using regular pred and will keep you ch free for a longer period. From Doc Goadsby: "We start patients on oral prednisolone 1mg/kg to a maximum of 60mg once daily for five days, then decrease the dose by 10mg every three days. Unfortunately, relapse almost invariably occurs because the dose is tapered. For this reason, steroids are used as an initial therapy in conjunction with preventatives, until the latter are effective."
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Title: Re: i dont understand Post by Bob_Johnson on Mar 15th, 2010 at 8:43am
Paula, to get around the neuro who is not responsive, would it be possible to enlist your primary care doc?
A number of us, not having access to a specialist and having a primary care who was open/receptive/willing to learn, learned how to treat us. It involved the patient providing MEDICAL literature which the doc can accept, giving guidance on treatment. I had this kind of relationship for 20-years with my primary care and he supported my requests for this or that med as long as I could show him that this was a standard/medically O.K. approach. |
Title: Re: i dont understand Post by anthony g on Mar 15th, 2010 at 8:45am
Bob I agree I have the same relationship with my primary care doc! He seems to get more personal than any specialist that I have been to!
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Title: Re: i dont understand Post by Callico on Mar 15th, 2010 at 1:13pm
I'm with Bob on this. Since you cannot get good care from your neuro and can't get to a specialist till Sept cultivate your GP. Mine is wonderful, and after firing my last Neuro several years ago I haven't been to another for CH, nor do i see the need. My GP has become somewhat knowledgeable and is more than willing to work with me on what I need.
Jerry |
Title: Re: i dont understand Post by pls1115 on Mar 15th, 2010 at 3:40pm
thanks so much for the help ive tried to talk to my neuro but like i said hes a @#$% and i get no where no excuse on the o2 just a no. and my primary said no because i have a normal o2 level. and she said it would be hard for her to fight for it. but im trying and i have the print out for the neuro. but today i called and they put me thru to a machine to leave a message instead of speaking to someone directly im telling you they do not like me because im not nice to them. im tired of getting nowhere though. i want the proper meds and without them im in pain. the hospital knows my name now. its pretty funny.they know my needs more then my own neuro. you would think by now the neuro would have learnt alittle about my condition but he hasnt. i wont stop trying nor will i stop pissing him off till i get some where. i went today to get melatonin im gonna try that tonight hopefully it helps and red bull. i have two imitrex pills left paying cash for them now and trying to contact the makers hoping they can help me too. what ever it takes. thanks guys for the support and info. im going to use it. (((((hugs to all of you)))))))))
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Title: Re: i dont understand Post by pls1115 on Mar 15th, 2010 at 9:07pm
hey batch thats some usefull info im going to try it all thanks ill let you know the out come and im off to the grocery store haha at least a family member is if i cant. the o2 im going to use it and give it to both the neuro and my primary it has to work with one of them. something has to give for petes sake. but yeah my insurance only covers 6 imitex injections a month and 3 zomig tablets every 3 weeks. the o2 is the plan for me. thanks alot. paula
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Title: Re: i dont understand Post by Loric on Mar 16th, 2010 at 1:07am
6 injects means 6 packs of 2 sets of 6mg statdose needles - pop those puppies open, peel off the label. Look at the Imitrex tip on the side column - it kinda sucks, but if you mark it right you can divide the 6mg dose per-shot into roughly 2mg doses. You might just want to do "half" at 3mg and call it a day, but that's your choice. PS: Do this at your own risk - take precautions to avoid infection, sterilize, alcohol swab, etc..
At that point, get prescribed more though - tell your pharmacy you dont have insurance (heck, walk across the street to CVS instead of walgreens ith a fresh scrip. if needed if they haggle about having insurance but exceeded coverage) to give you the generic. You should be able to get the shot packs for about $100 each. Pricey, but with dividing the shots it's liveable at about $500 to get you through a week+ of what would be the worst of it for most people until your oral meds are figured out or you get the oxygen straightened out. |
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