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        New Message Board Archives >> Jul-Sep 2003 >> Sandomigran 
        
(Message started by: Ride_the_Lightning on Jul 1^st, 2003, 2:37am)

Title: Sandomigran
Post by Ride_the_Lightning on Jul 1^st, 2003, 2:37am

Goodmorning People of Cluster, how is everybodyut his mornig?
yesterday i went to my GP and begged him for imigrane(imitrex) nose spray, he was being difficult baout it and just when i thought it was not going to work, i start getting an attack, in his office, so i said i am not leaving until he witnesses it, aftre around 20 minutes of me demonstrating a very shy version of the dance, he believed me and prescribv3ed 4 nose spreay thingies...only 4, i said to him that is a dasy worth, he made me promise not to take more than two a day..so that is whyt he prescribed a small amnount...anwyas, he also gave me sandomigran to use 3 times a day, pain or not..anyone know or has used this before? pleas elt me know...i dont want to take it yet, info first would be cool...thanks guys

Title: Re: Sandomigran
Post by oringkid on Jul 1^st, 2003, 2:58am

Well, the first thing I saw when I looked it up was this!

http://www.ocpinfo.com/client/ocp/ocphome.nsf/1071f947e728982c85256ac700690097/35eadca7cd2d8d9985256ac7006cd572?OpenDocument

Basically, it is a migraine preventative.

Hope this helps...

Sherry

Title: Re: Sandomigran
Post by gene on Jul 1^st, 2003, 3:01am

Hey Pal,

Truly sorry you are suffering. I HATE the indignity we all have to endure with Docs to get what we need!! I'd like to see them deal with our pain without meds. I bet their philosophy regarding prescribing for CHers would change really fast!!

I don't get the thinking behind prescribing nasal sprays pills etc instead of the shots. It seems to be well documented that Unique to clusters, our attacks are short, therefore it only makes sense to use the fasting acting method.

I have simply stated to Docs/ nothing works for me but the shots/ so far that has worked. Insurance and refills are another story. The "imitrex tip" has worked splendidly for me.

I think perhaps it's time for a new Doc. I've given up on Neurologists, in favor of young GPs. I interview their receptionists before booking an appt. I tell that I'm a CHer and that I'm looking for a sympathetic, knowledgable Doc who is willing to prescribe aggresively, the meds I will need to fight the cycle.

Result: I'm PF now with a fridge full of imitrex shots.

Gotta be a strong advocate IMHO, for yourself. that's just one mans opinion.

If there is anything I can do to help in this regard pls private message me.

gene

Title: Re: Sandomigran
Post by Ride_the_Lightning on Jul 1^st, 2003, 3:16am

Thanks for ty response guys...the reason i choose the shots is coz i have a needle phobia hehehe so the shots are the only solution until i et over my needlescare...the nasal works excellent for me too, just leaves a nastry after atset dripping intop the back of your throat.....thansl for the link on sandomigran

Title: reventatives work for clusterheadRe: Sandomigran
Post by Ride_the_Lightning on Jul 1^st, 2003, 3:19am

Out of experience, do you know if migraine

Title: Re: Sandomigran
Post by Ride_the_Lightning on Jul 1^st, 2003, 3:19am

sorry i will try agaoin
do you klnow if migraine preventyatives work or have any positive effect on our heads of cluster?

Title: Re: Sandomigran
Post by oringkid on Jul 1^st, 2003, 3:25am

Imitrex is a migraine med. And since your doc is only giving you 4 and prescribing Sando... He may think you have migraine.

But yes, some migraine meds work, some don't.

Sherry

Title: Re: Sandomigran
Post by Wendy the Brit on Jul 1^st, 2003, 3:55am

Lightning
For my pennysworth, some Migraine abortives and preventives work for some people and not for others. Unfortunately it is trial and error. (e.g. Zomig, Pizotifen etc)
It is crucial as Sherry says that the diagnosis is right first. Severe migraine can closely mimic many (not all) of the Cluster symptoms.
Generally speaking, the migraine drugs are not particularly good for CH, but the doctors are more familiar with them, so keep prescribing them for CH.
As far as preventives go, Verapimil is far and away the most effective preventive so far found for CH for most (not all) people who have tried it.
If your doctor does not know about CH, he would not know about Verapimil as a preventive, since it was developed as a heart drug, not for headache treatment.

Try having a look through the information on this board (links on left) for which drugs sufferers have tried and how well they seem to work.

For me, the migraine meds work brilliantly for migraine and don't touch my CH so I have two sets of abortives and preventives.

Hope this helps

W the B

Title: Re: Sandomigran
Post by Ride_the_Lightning on Jul 1^st, 2003, 4:04am

cheers fo rth reply,
my doc kjnows i have ch, he diagnosed e with it and refred me to the neurologist for a confirmation of the diagnosis, the neuro confirmed it ....so he is aware of the fact that i have clusterheadaches...man, i dont get it, its likethey see us as medicine junkies and never want to prescribe the good stuff hehe
i am going to go see differnet doctrors and get 4 nasal sprays from each
otherwise i am going ot on holiday to portugal this year to visit my parents in law, and over there u can get anythign over the counter if you pay the right price, so iw ill be spending my holiday money all on imigrane....maybe i will open a clusterbar, where people can come nad get their pints or shot glasses of any pain killer they want

Title: Re: Sandomigran
Post by don on Jul 1^st, 2003, 9:49am

Ride,

Every affective CH med formulated for headache prevention or abortive properties are marketed as a migraine drug. I know of not one medication that is marketed specifically for CH.

Quote:

do you klnow if migraine preventyatives work or have any positive effect on our heads of cluster?

So to answer your question. yes and no. :-/

Title: Re: Sandomigran
Post by Ueli on Jul 1^st, 2003, 2:11pm

Pizotifen (trade names: Sanomigran, Sandomigran) is an appetizer and mood enhancer. It does this by altering the blood concentrations of serotonin and other neurotransmitters. Because of this it also is sometimes used, occasionally successful, to prevent meegraines.
In the UK Pizotifen is on the list of approved treatments for CH, but I'm afraid to say, we yet have to hear from someone who was helped by it.
Please keep us posted about your success, or lack of it.

PFNADs
Ueli

Title: Re: Sandomigran
Post by Wendy the Brit on Jul 1^st, 2003, 4:08pm

Ueli

I'm with you on this one, didn't realise Sanomigran and Pizotifen were the same thing. Pizotifen didn't even prevent my migraines, let alone Ch. It just made me dozy and fat (no jokes Cathy!!!!).

W the B

Title: Re: Sandomigran
Post by juvy on Jul 2^nd, 2003, 3:02am

Ride,

I'm CPH not CH but in the beginning I used Sandomigran...That stuff made me hungrier than hell. I gained 10 pounds in a month. Other than that I didn't have too many other side affects. Unfortunately since I have CPH and not CH, the Sandomigran didn't affect the pain one whit. I hope it works better for you.

Cheers,
Juvy

Title: Re: Sandomigran
Post by Ride_the_Lightning on Jul 2^nd, 2003, 6:46am

hi peepz,
this is probably posted 200 times in big bright colours on this site, bnuit i will ask anyways, what is the difference between cph and ch? except for the p?

Title: Re: Sandomigran
Post by juvy on Jul 2^nd, 2003, 6:56am

Lightning,

Well, CH is Cluster Headaches. CPH is Chronic Paroxysmal Hemicrania (I don't know if I spelled it correctly) Some Drs claim it's a subset of CH as the symptoms are similar but the pain doesn't last as long. The attacks on the other hand are much more frequent. In my case I have a rare version of CPH that affects both sides of the head. Being chronic this affects me everyday. No breaks. About once a month I will have a day or two of peace but that's about it. The CH gang lets me hang around here in case another CPHer pops up and needs help.

CPH can usually be fully treated with Indomethacin. Again i'm in the 5% of patients that do not get complete relief from this drug. It has lessoned the pain but doesn't completely extinguish it like it should.

Cheers,
Juvy

Title: Re: Sandomigran
Post by Ride_the_Lightning on Jul 2^nd, 2003, 7:17am

im glad i asked...do u also have trhe feeling that your headaches are completely random?
now you menbtion all this, my headaches are really short but some may take up to 45 minutes, themost of them are like 15 minutes long....my first neurologist gave me indometacine, but badck then i wasnt too much of a beliver in medicine, i still have the pills i will try the treatment...i also have like max of two three days pain free and i just sugffe the rest....

Title: Re: Sandomigran
Post by juvy on Jul 2^nd, 2003, 7:22am

Lightning,

They are completely random..no set time. plain Indomethacin didn't really work for me so the Medical University in Leiden prescribed Indomethacin Retard 75.

I'm not much on taking meds, just a quirk of mine, but the Retard 75 works wonders.

Title: Re: Sandomigran
Post by Ride_the_Lightning on Jul 2^nd, 2003, 7:46am

retard 75?
yeah i think i am going to go to my GP and go , can i have a box of retards..hehe i know bad joke
yeah then you have just diagnosed me with cph....
is alcohol a bastard of atrigger to you to?

Title: Re: Sandomigran
Post by juvy on Jul 2^nd, 2003, 7:48am

yes I can no longer drink alcohol...or at least i should no longer drink alcohol