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        New Message Board Archives >> Jul-Sep 2003 >> NEWBIE
        
(Message started by: danyelle27 on Jul 30^th, 2003, 11:58am)

Title: NEWBIE
Post by danyelle27 on Jul 30^th, 2003, 11:58am

Hi all new to this site I am a 27 year old female with three wonderful boys ages 10,6, and 4. The reason that I am here is that I just found out 2 days ago that I have cluster headaches as well as migraines with areua (sp). Anyway they want to start me on sansert does anyone know anything about this medication. This all started with what I thought was a 3 week mig not that I ever had one that lasted that long but I have had migs since I was 8. Anyway, everything they gave me couldn't take the pain away. So after several trips to the doc and ER the doc finally said that is was a cluster headache. My thoughts on the matter was good now they know what it is they can get rid of it yeah right they want to see if the sansert kills the pain so we'll see. Worse part is that through all this I lost my job. :-[ So nowI have no way except my husbands pay to support everyone and pay for meds. I have nooooooooo insurance. if anyone has any suggestions please let me know thanks for listening.

Title: Re: NEWBIE
Post by Big_Dan on Jul 30^th, 2003, 12:13pm

Sorry about your situation... wish I could help...

On the topic of Sansert... I've never tried it... but someone on this board has.... I'm sure of that...

Just stick around, and self-educate.... it's the best place to start... ;D

-Big Dan

Title: Re: NEWBIE
Post by Brian_Y on Jul 30^th, 2003, 1:05pm

Was the doctor's diagnosis thought out? I may be wrong, but the way you convey it here is that it was an educated guess.

Take teh quiz and see if what you have is clusters. I'd get a second opinion too. And try O2. If that breaks it, then that might be what it is.

Title: Re: NEWBIE
Post by FrankF on Jul 30^th, 2003, 1:10pm

Quote:

Anyway they want to start me on sansert does anyone know anything about this medication.

Last I heard, Sansert has been discontinued in the US. There is supposed to be a replacement med with another name but I haven't tried it. If you get a prescription that says "Sansert" you might have trouble getting it filled.

Title: Re: NEWBIE
Post by danyelle27 on Jul 30^th, 2003, 1:18pm

The Dr. that did this diagnoises is supposed to be one of the best MD's in the city I live in. As far as the prescription the pharmacy didn't have it on hand but was able to get it in about 24 hours so i don't know what to think but you are not the first person that has said that. Ihave not tried anything yet except I start the sansert today. I am also on verapmil, lamictal, atenolol, phnegran, and trazodone.

Title: Re: NEWBIE
Post by Bob P on Jul 30^th, 2003, 1:29pm

Does you doc know that a cluster headache usually lasts between 30 minutes and 2 hours with a very abrupt beginning and end?

Title: Re: NEWBIE
Post by danyelle27 on Jul 30^th, 2003, 1:33pm

OMG, to be honest I don't know what is going on I am just doing research on what they are telling me. An for the sansert I just got a call from the Dr's office that the Pharmacy cannot fill the sansert and has changed it to something else. I don't really know what is going on all I do know is that I hurt realllllllllllllly bad as all of you do I am sure. :'(

Title: Re: NEWBIE
Post by Bob P on Jul 30^th, 2003, 1:43pm

Just trying to help you get a correct diagnosis here. I know when we're in pain we grab at anything to hang it on.

Cluster headaches are on one side of your head in the eye/temple/forhead area. Sharpest pain you've ever felt. Like someone sticking a red hot screwdriver in your eye. They go from 0 to 10 on the pain scale in 10 minutes. The eye on that side tears and the nostril runs. Can't lay down, gotta move or at least sit. They last 30 minutes to 2 hours and end as quickly as they start. You can get 1 to 8 attacks a day, every day for weeks or months and then they go away for a while only to return months later.

Your doc may be really good as a doctor but very few are well versed in clusters. What you described above doesn't sound like clusters.

Sansert - sometimes the docs use cafergot in place of sansert. It's cheap and still made I believe. 1 tablet a couple times a day. Sansert is a derivative of LSD. It did stop headaches but made feel like I was on the down elevator all day when I took it years ago.

Good luck to ya.

Title: Re: NEWBIE
Post by Ted on Jul 30^th, 2003, 1:49pm

A three week attack definitely doesn't sound like CHs, if I read that right. Have you had other non-migraine attacks and if so, what were they like? I know you said you have no insurance now but it is pretty important to get an MRI to rule out anything much more drastic.

Title: Re: NEWBIE
Post by danyelle27 on Jul 30^th, 2003, 2:06pm

I do have regular headaches that are the norm ya know just take a couple aleve and it goes away. I just had a CT scan the other day normal, they want to do an MRI but we are waiting until we can find away to do it. As far as the pain. It is in the right temple area always. My eyes kinda go blurry, have real sharp pains that come and go kinda like a thousand needles sticking me. At times my right eye twiches. I understand that everyone is trying to help and I appreciate it believe me.

Title: Re: NEWBIE
Post by Ted on Jul 30^th, 2003, 2:13pm

The pain comes and goes. How long do they last for? Have you looked into Chronic Paroxysmal Hemicrania (CPH) (Or Episodic PH)? This is the cousin to CH with the duration of the attack lasting a much shorter time but coming many more times per day.

Title: Re: NEWBIE
Post by cootie on Jul 30^th, 2003, 3:58pm

Yeah danyelle27 I think Ted mite be on to sumthing.....mite wana ask yer doc about what he has said it could be verses CH.....or find a doc more knowledgeable in the area. We got lucky and found and internalist doc that is very interested in CH and as up on meds as he can be...at least he is into helpin best he can and research. Thee has been alot of talk bout Sansert and folks saying it did work but now discontinued here...alot of people are lost without it tryin to find an alternative. Keep readin here and maybe take the cluster quiz offern'd on this site. Keep us posted what you find out.....good luck to you ! Pam that remembers LSD vividly

Title: Re: NEWBIE
Post by Charlie on Jul 30^th, 2003, 10:44pm

Welcome and stick around. We hope what you have is something else but let us know how you're doing.

If these headaches wake you out of a sound sleep the chances of clusters is greater. For me, it's a key.

Good luck and the Sansert story is interesting.

Charlie

Title: Re: NEWBIE
Post by catlind on Jul 31^st, 2003, 7:50am

Welcome and read read read. There is alot of info on this site and the OUCH site (button on the left) You can read up on all the info there is on CH and maybe bring it back to your doc. If you do have CPH, then one of the first things you should be trying is indomethacin. It will be 100% effective on CPH and it doesn't cost much. It won't however do anything for CH.

Can you go into some detail about the headaches? How do they come on? Do you have to move around? Do you prefer dark and queit? How long do they last? Is the 3 weeks a constant, or does the headache ebb and flow over that time?

The more info you can give us the better we can help you :)

Cat

Title: Re: NEWBIE
Post by Ree on Jul 31^st, 2003, 11:42am

Hi Daniyelle this is the place where you will definately find the definition of your headaches. My opinion is that the people (sufferers here) know more about CH than the docs do. So believe what they tell you... Did you know that we learned at this convention that in Med school for Neurology they only have 5 hours of study on headache... that is what Dr Bigal told us. So alot of times unless your doc is a headache specailist and they are baffled by a headache they say Cluster... I have Migraine and have had one last about a week but no longer... I had meningitis though and they discovered that with a spinal tap so be sure you dont have a serious condition.... good luck and welcome... Ree

Title: Re: NEWBIE
Post by danyelle27 on Jul 31^st, 2003, 1:34pm

I honestly don't know what is going on. Is it possible to have CH with a mig. Just trying to figure out what is going on all I do know is that I hurt. Actually, when they could not get the sansert, they did call in indocin that you were talking about I have taken two doses and the pain of all the little needles are subsiding but the throbbing pain and photosentivity are all still there so I don't know. I did go to another doc today at a free clinic cause i have no insurance and they can help you get your prescriptions free and he prescribed me some meds so now i am waiting on my regular doc to call me and let me know what meds i am supposed to take and which to quit taking GOD help me something has to give.

Title: Re: NEWBIE
Post by catlind on Aug 1^st, 2003, 8:58am

yes Danyelle it is possible to have CH and migraine at the same time. If it is in fact CH, you will learn over time, and from here, how to tell which is which.

I hope you find relief soon!

Cat

Title: Re: NEWBIE
Post by zorro1p on Aug 16^th, 2003, 9:19am

Hi,

I've read all these ungodly stories about sansert. I've has Cfs for 30 years until 15 years ago when a Dr prescribed sansert and Prednisone. Worked like a champ. Shitty side affects like dumbness. First week on them, I got lost driving home! Since then, each time gets better. I call them stupid pills cause I can't remember things ... like if I took the pills or not. I take them for 8-10 weeks and I get an occational breakthru along with Hand and Foot Craps. But sure beats the headaches for 4 hours EVERYDAY at the same time.

Sansert is no longer made but I'm trying to get it in Canada,

My Rx is 2mg sansert 4 times a day and 10mg Prednizone
4 times a day and I take these for 10 weeks .... That's my cycle for CH. I get an occational breakthrugh if I'm dring beers or wines ... But this is the best treatment I've had for the past 15 years.

Rod

Title: Re: NEWBIE
Post by 2late on Aug 16^th, 2003, 9:32am

welcome aboard danyelle! i hope it ain't clusters, sorry to hear about yer situation,good luck to ya! ..............Jack