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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hello Folks
        
(Message started by: n4xft on Nov 19^th, 2005, 9:18pm)

Title: Hello Folks
Post by n4xft on Nov 19^th, 2005, 9:18pm

I would like to introduce myself and express my absolute joy at finding this site. I am 54 and have never in my life experienced anything like this. so I was very unaware of what was going on. About 3 weeks ago I went to my fairly new in experience doctor with what I thought was a bad sinus infection after a week of the worst recuring headaches in my life. She agreed and prescribed antibotics and informed me my blood pressure was up, naturally it was, I had been pokeing down every OTC drug I could think of to try and ease these godauful headaches. I asked about the recuring headaches and she gave me a migrane drug called midrin. Oh such a bad choice...It made things very much worse. After another week of kip 8-10 scale I went back and blood pressure was out of sight, again from otc, the midrin and fear-stress. called her today early am and she prescribed oxycotin which only seems to take a little edge off the pain of the nasty one today about 2PM, really no help at all. For the last few nights I have had lots of time to prowl thru this site , take the quizz, and garner lots of information for my next appointment monday. I seem to have at least 4 skulbusters every day and the worst are at night and early AM hours plus some more minor ones inbetween. so, thats the beginning of my story and now I am off on the journey of trying to educate a doctor who seems to not understand this at all or the actual agony that I am experiencing. I would really like to try and take care of this with h20 and maybe kudzu if it is realistic. I am learning fast by reading the forums and I thank all of you for being here in the wee hours of the morning when it starts to go away and I am afraid to go to sleep again...knowing what awaits me. I know this is long but thanks for listening to me.. david

Title: Re: Hello Folks
Post by BobG on Nov 19^th, 2005, 9:35pm

Welcome n4xft. Sorry you had a reason to come here.

Question.......I've read it a dozen times and still can't figure it out..........what does n4Xft mean?

I think you're on the right track by looking into O2 and kudzu. There are also other alternative treatments talked about here. Many folks have complained about the side affects of "usual, regular, normal" drugs used to combat clusters. Stay away from pain killer meds like oxycotin and OTC pain killers. They don't work for clusters and can lead to other problems.

Please be sure to get a diagnoses that you do, in fact, have clusters. I say that because you say you get 4 attacks at night and more in between. That's a lot of attacks. Not unheard of but still a lot. And your age, 54, is late in life for clusters to begin. Again, not unheard of but unusual.

Please let us know what the doctor says on Monday.

Title: Re: Hello Folks
Post by AussieBrian on Nov 19^th, 2005, 10:20pm

Might also be worth printing off a lot of the information here, especially the medical and oxygen info stuff on the left, and taking it with you on Monday. Many doctors become chary when you say "I got it off the net" but there's a lot here that's written for exactly that purpose.

Presuming that it is CH, and we all really hope it's not, I'm afraid you'll have to become accustomed to educating doctors.

Let us know how you get on because we're always here to help. Also, feel perfectly free to PM any of us if that makes you more comfortable.

Cheers from Down Under,

Brian.

Title: Re: Hello Folks
Post by n4xft on Nov 19^th, 2005, 10:27pm

hello Bob,
thanks for the reply. the four attacks occur in a 24 hour period. the daytime ones are not nearly as bad as the couple that wake me up at night and early am, usually about 2am or so. for the worst one and soon after I get to sleep for the first. I really have no way to be sure it is CH except that I get a perfect score on the quizz on this site and all the symtoms fit. My doctor doesn't seem to know anything about the issue. I was sent for a CAT scan which didn't show any abnormalities like anyurism so I am left to assume for myself by the symtoms.
the user name n4xft is my amateur radio station call sign and I use it because I never have a conflict with anyone else having it.
it's past bedtime now so I guess I will head in now but will probably be back later if the pattern of the last 4 weeks continues. I am so tired and a bit afraid but life must go on. thanks for listening. david

Title: Re: Hello Folks
Post by BobG on Nov 19^th, 2005, 10:55pm

We've all been at the point of being afraid to sleep knowing what was going to happen as soon as REM sleep mode starts. Just wanted to say try sleeping with your head elevated. More or less sittng up or in the La-Z-Boy. Not the most comfortable but it seems to help some of us get through the night. The attacks still come on but don't seem to be as bad. Some folks use melatonin to get through the night.
Try to get your doc to refer you to a neurologist that knows and understands headaches. Not all of them do. Sounds to me like you do suffer clusters. We just want to be sure you don't get treated for something that you don't have.
Good night David.

Title: Re: Hello Folks
Post by n4xft on Nov 20^th, 2005, 12:52am

1AM and here I sit again, never thought about the rem sleep but it sure fits. I rember having some really wierd dreams just b4 i wake up with the devil on my back.. only 45 min this time, not so bad...yea, right, not so bad. feel like I ought to just sit here all night but I am so tired. only two today. 11 am, which was very mild and now this one which was a walker, screamer..night all

Title: Re: Hello Folks
Post by MJ on Nov 20^th, 2005, 2:29am

Hi.

Welcome n4xft. Iwas looking at your call sighn too. thought maybe you were just not 4 ft. tall.

The REM sleep is a very real problem.

Just a note on the frequency of attacks.
When my first diagnosis of clusters came some 20 odd years ago. There was a huge delay in the diagnosis because of the length and frequency of attack. My nuero at the time thought that because as many as 12 would occur in a 24 hr period they had to be something else.

His research finally proved me a clusterhead. This certainly allowed some comfort in knowing what was up.

He also told me I would most likely outgrow them when I got older.
I was quite depressed when I turned 30 long ago and they were still there.

The very best information is here at your fingertips. And the folks all have knowledge as you see above, often better than some of the docs. Links to most sites and info of relevance are here somewhere as you are finding.

I hope you find its not clusters at all, and even more so I
Hope you get some sleep.

MJ

Title: Re: Hello Folks
Post by n4xft on Nov 20^th, 2005, 10:03am

you are so right MJ , the first week seemed to be one after another attack...but now in the 4th week it seems to have leveled out to 2-4 in a 24 hr period. I still have no diagnosis that is "official" but I go back to the GP tommorow and I am going to get a referal to nueroligist. Man, I feel so wasted and I just can't figure why this would start up so late in life...

Title: Re: Hello Folks
Post by Barry_T_Coles on Nov 21^st, 2005, 5:21am

Hi David

Barry from Down Under, welcome to the best place for info on the little shit that gives us hell.

I to developed CH late in life 50 years old on the first one and 55 on the last, maybe we are just late developers.

Read every thing you can get hold off here, there is an absuloute treasure chest of info.

If you have to educate your GP & Nuro, do so & go armed with every bit of relevent info you can get your hands on.

As far as sleeping goes try propping youselfe up with as many pillows as you can get more or less in the sitting up position, that was the only way I found I could get some sleep, uncomfortable but at least you may be able to push some ZZZZs out.

Hang in there and hope things look brighter for you shortly.

Kind Regards
Barry

Title: Re: Hello Folks
Post by n4xft on Nov 21^st, 2005, 7:36pm

had my visit with the doctor today. she seems happy with the slight hypertension control issue but as far as the headaches i feel that she is unaccepting that CH might be the problem. She tried to give me another migrain medicine [ don't I wish I had those symptoms instead of what I do have] which I declined because the last migraine med seemed to make things much worse. she was not even interested in looking at my timetable chart and the information I brought in for her. she was happy to put in a referal to a nuerologist so that is the way I will go. everyone needs a GP for common illness but she is out of my loop now for the headache issues.
funny time last night, got to sleep fine and after about an hour woke up with the building feeling- did my ritual, out of bed, in my chair, with a cup of strong coffee, box of tissue and jug of water and it just went back down in about 15- 20 mins total from eyes open to done without ever getting very bad. It did this routine all night long, sleep for hour or so and up again..like the beast was teasing me.... my ritual- swill water, gulp of hot coffee, pace and cuss, swill more water ect,ect,ect.
has anyone else found hot caffine to help or is it just my imagination that it might?

Title: Re: Hello Folks
Post by BobG on Nov 21^st, 2005, 7:44pm

on 11/21/05 at 19:36:09, n4xft wrote:

has anyone else found hot caffine to help or is it just my imagination that it might?

Yep, many folks have said that hot, strong coffee will help during an attack. Could be the caffeine. Many others have mentioned high caffeine drinks like Red Bull.