Re: Prednisolone and migraines

[Guest guest]

Hi there,I'm from the UK and there are quite a few of us here from the UK. I live in Somerset but see Dr Nasser at Addenbrookes, and had one surgery there too. Who is your Dr and why did it take them so long to diagnose you?Can you tell us a little bit more about yourself please, like age group and name?Welcome to this group, I hope you'll find a wealth of information and support.BeckyFrom: amblackadder <amblackadder@...>To:

samters Sent: Tuesday, 4 October 2011, 23:25Subject: Prednisolone and migraines

Hello, have just joined today. Been a samters sufferer for 19 years, only decent diagnosis from Addenbrookes about 6 years ago. Have had 10 ops on polyps, septum,turbinates etc,etc and was told that next time (!) I have surgery they will have to use a robot as there are no markers left up there to guide the way!

I have had aspirin desensitization treatment and was doing well on 1 and a half aspirin a day, with singulair, flixonase nasules, sinus rinse and symbicort for my asthma. But got ill and messed up my medicines.

Latest load of prednisolone was ok for about 5 days though felt like i had indigestion like symptoms and slight nausea. Then got terrible migraine and vomiting for 2 days so messed up my medicines again! Can't seem to get straight now. Tried prednisolone again , after 2 days migraine and vomiting again!! Help....these steroids have been my lifeline. Now what shall I do. Feeling really down. Aspirins down to zero now.

I am from the UK are there many other Samter's sufferes out there I feel so alone.

[Guest guest]

Hi again,sorry i forgot to mention your steroid issues...why is your aspirin down to zero? Were you desens to aspirin and if so, how long?This steroid issue may be due to your stomach lining being extra sensitive. Maybe lower your steroid dose....what dose were you taking?BeckyFrom: Bannister <beckyb256@...>"samters " <samters >Sent: Wednesday, 5 October 2011, 7:33Subject: Re: Prednisolone and migraines

Hi there,I'm from the UK and there are quite a few of us here from the UK. I live in Somerset but see Dr Nasser at Addenbrookes, and had one surgery there too. Who is your Dr and why did it take them so long to diagnose you?Can you tell us a little bit more about yourself please, like age group and name?Welcome to this group, I hope you'll find a wealth of information and support.BeckyFrom: amblackadder <amblackadder@...>To:

samters Sent: Tuesday, 4 October 2011, 23:25Subject: Prednisolone and migraines

Hello, have just joined today. Been a samters sufferer for 19 years, only decent diagnosis from Addenbrookes about 6 years ago. Have had 10 ops on polyps, septum,turbinates etc,etc and was told that next time (!) I have surgery they will have to use a robot as there are no markers left up there to guide the way!

I have had aspirin desensitization treatment and was doing well on 1 and a half aspirin a day, with singulair, flixonase nasules, sinus rinse and symbicort for my asthma. But got ill and messed up my medicines.

Latest load of prednisolone was ok for about 5 days though felt like i had indigestion like symptoms and slight nausea. Then got terrible migraine and vomiting for 2 days so messed up my medicines again! Can't seem to get straight now. Tried prednisolone again , after 2 days migraine and vomiting again!! Help....these steroids have been my lifeline. Now what shall I do. Feeling really down. Aspirins down to zero now.

I am from the UK are there many other Samter's sufferes out there I feel so alone.

[Guest guest]

Don't worry you are not alone. I am in UK. Just recovering from FESS operation on polyps. Sent from my iPadOn 4 Oct 2011, at 23:25, "amblackadder" <amblackadder@...> wrote:

Hello, have just joined today. Been a samters sufferer for 19 years, only decent diagnosis from Addenbrookes about 6 years ago. Have had 10 ops on polyps, septum,turbinates etc,etc and was told that next time (!) I have surgery they will have to use a robot as there are no markers left up there to guide the way!

I have had aspirin desensitization treatment and was doing well on 1 and a half aspirin a day, with singulair, flixonase nasules, sinus rinse and symbicort for my asthma. But got ill and messed up my medicines.

Latest load of prednisolone was ok for about 5 days though felt like i had indigestion like symptoms and slight nausea. Then got terrible migraine and vomiting for 2 days so messed up my medicines again! Can't seem to get straight now. Tried prednisolone again , after 2 days migraine and vomiting again!! Help....these steroids have been my lifeline. Now what shall I do. Feeling really down. Aspirins down to zero now.

I am from the UK are there many other Samter's sufferes out there I feel so alone.

[Guest guest]

Have u worked on eliminating triggers from your diet or atmosphere. I had improvement by taking out coffee before i was desensitized. Not a 100% fix but it was relieving to have some reliefBianca On Oct 4, 2011, at 2:25 PM, "amblackadder" <amblackadder@...> wrote:

Hello, have just joined today. Been a samters sufferer for 19 years, only decent diagnosis from Addenbrookes about 6 years ago. Have had 10 ops on polyps, septum,turbinates etc,etc and was told that next time (!) I have surgery they will have to use a robot as there are no markers left up there to guide the way!

I have had aspirin desensitization treatment and was doing well on 1 and a half aspirin a day, with singulair, flixonase nasules, sinus rinse and symbicort for my asthma. But got ill and messed up my medicines.

Latest load of prednisolone was ok for about 5 days though felt like i had indigestion like symptoms and slight nausea. Then got terrible migraine and vomiting for 2 days so messed up my medicines again! Can't seem to get straight now. Tried prednisolone again , after 2 days migraine and vomiting again!! Help....these steroids have been my lifeline. Now what shall I do. Feeling really down. Aspirins down to zero now.

I am from the UK are there many other Samter's sufferes out there I feel so alone.

[Guest guest]

Aah hello, thanks so much for replying!! I see Dr Nasser at Addenbrookes, he's

my lifesaver! I was under various consultants at Northampton where I live, but

the ENT dept never seemed to communicate with the asthma/chest doctors, and the

allergists I saw only ever did the same allergy prick test which showed I was

allergic to cats and grass! I went to Paddington St s, Kettering hospital

allergy clinics, but they just seemed to write it off as unrelated! I am 48 this

November. It was only after I ended up in hospital for 6 days with a really bad

asthma attack that I begged my doctor to send me to see another allergy clinic

and she sent me to Dr Nasser. Everyone is really brilliant at Addenbrookes, I

went on a low salicylate diet which helps, and I try to stick to it as much as I

can, but it's tricky. Sorry, my name is Anne-Marie, and it's so nice to find

others to talk to X

>

> Hi there,

> I'm from the UK and there are quite a few of us here from the UK. I live in

Somerset but see Dr Nasser at Addenbrookes, and had one surgery there too. Who

is your Dr and why did it take them so long to diagnose you?

> Can you tell us a little bit more about yourself please, like age group and

name?

> Welcome to this group, I hope you'll find a wealth of information and support.

> Becky

>

>

> ________________________________

> From: amblackadder <amblackadder@...>

> samters

> Sent: Tuesday, 4 October 2011, 23:25

> Subject: Prednisolone and migraines

>

>

>  

> Hello, have just joined today. Been a samters sufferer for 19 years, only

decent diagnosis from Addenbrookes about 6 years ago. Have had 10 ops on polyps,

septum,turbinates etc,etc and was told that next time (!) I have surgery they

will have to use a robot as there are no markers left up there to guide the way!

> I have had aspirin desensitization treatment and was doing well on 1 and a

half aspirin a day, with singulair, flixonase nasules, sinus rinse and symbicort

for my asthma. But got ill and messed up my medicines.

> Latest load of prednisolone was ok for about 5 days though felt like i had

indigestion like symptoms and slight nausea. Then got terrible migraine and

vomiting for 2 days so messed up my medicines again! Can't seem to get straight

now. Tried prednisolone again , after 2 days migraine and vomiting again!!

Help....these steroids have been my lifeline. Now what shall I do. Feeling

really down. Aspirins down to zero now.

> I am from the UK are there many other Samter's sufferes out there I feel so

alone.

>

[Guest guest]

I had aspirin desens at Addenbrookes, and managed to build it up to nearly 1 and

a half. But due to forgetting it a few times, and the migraines I haven't been

able to take it without getting really bad allergy symptoms again. My last lot

of steroids was 6 a day for a week, but its messed my stomach and head up. Tried

lowering the dose but just got migraine symptoms again.

>

> Hi again,

> sorry i forgot to mention your steroid issues...why is your aspirin down to

zero? Were you desens to aspirin and if so, how long?

> This steroid issue may be due to your stomach lining being extra sensitive.

Maybe lower your steroid dose....what dose were you taking?

>

> Becky

>

>

> ________________________________

> From: Bannister <beckyb256@...>

> " samters " <samters >

> Sent: Wednesday, 5 October 2011, 7:33

> Subject: Re: Prednisolone and migraines

>

>

>  

> Hi there,

> I'm from the UK and there are quite a few of us here from the UK. I live in

Somerset but see Dr Nasser at Addenbrookes, and had one surgery there too. Who

is your Dr and why did it take them so long to diagnose you?

> Can you tell us a little bit more about yourself please, like age group and

name?

> Welcome to this group, I hope you'll find a wealth of information and support.

> Becky

>

>

> ________________________________

> From: amblackadder <amblackadder@...>

> samters

> Sent: Tuesday, 4 October 2011, 23:25

> Subject: Prednisolone and migraines

>

>

>  

> Hello, have just joined today. Been a samters sufferer for 19 years, only

decent diagnosis from Addenbrookes about 6 years ago. Have had 10 ops on polyps,

septum,turbinates etc,etc and was told that next time (!) I have surgery they

will have to use a robot as there are no markers left up there to guide the way!

> I have had aspirin desensitization treatment and was doing well on 1 and a

half aspirin a day, with singulair, flixonase nasules, sinus rinse and symbicort

for my asthma. But got ill and messed up my medicines.

> Latest load of prednisolone was ok for about 5 days though felt like i had

indigestion like symptoms and slight nausea. Then got terrible migraine and

vomiting for 2 days so messed up my medicines again! Can't seem to get straight

now. Tried prednisolone again , after 2 days migraine and vomiting again!!

Help....these steroids have been my lifeline. Now what shall I do. Feeling

really down. Aspirins down to zero now.

> I am from the UK are there many other Samter's sufferes out there I feel so

alone.

>

[Guest guest]

Oh poor you, hope it went well. Have you still got your packs in, or did they

use those lovely dissolvable ones?? I was always worried I was going to swallow

them cos as my nose started running they began to dissolve!! What does FESS

mean? Sorry to be ignorant! So glad there's others out there was starting to

think I was all alone. How many polypectomies have you had now? Whereabouts are

you? Hope your recovery goes well.

>

> > Hello, have just joined today. Been a samters sufferer for 19 years, only

decent diagnosis from Addenbrookes about 6 years ago. Have had 10 ops on polyps,

septum,turbinates etc,etc and was told that next time (!) I have surgery they

will have to use a robot as there are no markers left up there to guide the way!

> > I have had aspirin desensitization treatment and was doing well on 1 and a

half aspirin a day, with singulair, flixonase nasules, sinus rinse and symbicort

for my asthma. But got ill and messed up my medicines.

> > Latest load of prednisolone was ok for about 5 days though felt like i had

indigestion like symptoms and slight nausea. Then got terrible migraine and

vomiting for 2 days so messed up my medicines again! Can't seem to get straight

now. Tried prednisolone again , after 2 days migraine and vomiting again!!

Help....these steroids have been my lifeline. Now what shall I do. Feeling

really down. Aspirins down to zero now.

> > I am from the UK are there many other Samter's sufferes out there I feel so

alone.

> >

> >

>

[Guest guest]

Thanks so much for replying, lovely to hear from you. I was doing a low

salicylate diet, but have got a bit sloppy again. Will have to be more

organised!

Does it affect your daily life much? Do you work?

>

> > Hello, have just joined today. Been a samters sufferer for 19 years, only

decent diagnosis from Addenbrookes about 6 years ago. Have had 10 ops on polyps,

septum,turbinates etc,etc and was told that next time (!) I have surgery they

will have to use a robot as there are no markers left up there to guide the way!

> > I have had aspirin desensitization treatment and was doing well on 1 and a

half aspirin a day, with singulair, flixonase nasules, sinus rinse and symbicort

for my asthma. But got ill and messed up my medicines.

> > Latest load of prednisolone was ok for about 5 days though felt like i had

indigestion like symptoms and slight nausea. Then got terrible migraine and

vomiting for 2 days so messed up my medicines again! Can't seem to get straight

now. Tried prednisolone again , after 2 days migraine and vomiting again!!

Help....these steroids have been my lifeline. Now what shall I do. Feeling

really down. Aspirins down to zero now.

> > I am from the UK are there many other Samter's sufferes out there I feel so

alone.

> >

> >

>

[Guest guest]

Yes went well although face looks like rugby ball hit it. Fess I think just means they use an endoscope to burrow deeply. Packs came out in a rather lovely way when I had a heavy sneeze my son in that little boy way demanded to look at them and then regretted it. I have not had an op for 15 years as I used betnelan tablets. Before then roughly about every 18months There was a manufacturing problem and they disappeared for a while and back came the polyps. I come from Leicester which was the home of polyps because of the rag trade fibres in the air. I was lucky however as I was not diagnosed as samters so finally found out after 30 years that I was not a freak. been given a weeks supply of tablets then used up on to the drops. Surgeon guy called Dermot Commins in northampton suggesting aspirin desense so that will be fun. At least will keep away the headaches and the heart attacks. Sent from my iPadOn 5 Oct 2011, at 20:20, "amblackadder" <amblackadder@...> wrote:

Oh poor you, hope it went well. Have you still got your packs in, or did they use those lovely dissolvable ones?? I was always worried I was going to swallow them cos as my nose started running they began to dissolve!! What does FESS mean? Sorry to be ignorant! So glad there's others out there was starting to think I was all alone. How many polypectomies have you had now? Whereabouts are you? Hope your recovery goes well.

>

> > Hello, have just joined today. Been a samters sufferer for 19 years, only decent diagnosis from Addenbrookes about 6 years ago. Have had 10 ops on polyps, septum,turbinates etc,etc and was told that next time (!) I have surgery they will have to use a robot as there are no markers left up there to guide the way!

> > I have had aspirin desensitization treatment and was doing well on 1 and a half aspirin a day, with singulair, flixonase nasules, sinus rinse and symbicort for my asthma. But got ill and messed up my medicines.

> > Latest load of prednisolone was ok for about 5 days though felt like i had indigestion like symptoms and slight nausea. Then got terrible migraine and vomiting for 2 days so messed up my medicines again! Can't seem to get straight now. Tried prednisolone again , after 2 days migraine and vomiting again!! Help....these steroids have been my lifeline. Now what shall I do. Feeling really down. Aspirins down to zero now.

> > I am from the UK are there many other Samter's sufferes out there I feel so alone.

> >

> >

>

[Guest guest]

So glad it went well, I have had Mr Commins too!He's really nice. Not heard of

betnelan is it a leukotene can't spell that! Like singulair?

Will you get desens at Leicester? It's not too bad they keep a very close eye on

you. Will be worth it. Must say I do feel like a freak myself. Have you managed

to work all these years with samters? All the best. Anne-Marie

> > >

> > > > Hello, have just joined today. Been a samters sufferer for 19 years,

only decent diagnosis from Addenbrookes about 6 years ago. Have had 10 ops on

polyps, septum,turbinates etc,etc and was told that next time (!) I have surgery

they will have to use a robot as there are no markers left up there to guide the

way!

> > > > I have had aspirin desensitization treatment and was doing well on 1 and

a half aspirin a day, with singulair, flixonase nasules, sinus rinse and

symbicort for my asthma. But got ill and messed up my medicines.

> > > > Latest load of prednisolone was ok for about 5 days though felt like i

had indigestion like symptoms and slight nausea. Then got terrible migraine and

vomiting for 2 days so messed up my medicines again! Can't seem to get straight

now. Tried prednisolone again , after 2 days migraine and vomiting again!!

Help....these steroids have been my lifeline. Now what shall I do. Feeling

really down. Aspirins down to zero now.

> > > > I am from the UK are there many other Samter's sufferes out there I feel

so alone.

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

Thanks Becky,

You've done really well with your aspirin! Do you find it has any side effects?

What part of the country are you from? I was wondering if being land locked in

the middle of the country has anything to do with it? Poor air quality etc?

Maybe we should all move to the seaside!! I would try desens again but feel a

bit guilty about how costlyit must be. I think I have McKiernon for ENT at

Addenbrookes. He was v. good. Don't really want another op for a long time tho.

> >

> > Hi there,

> > I'm from the UK and there are quite a few of us here from the UK. I live in

Somerset but see Dr Nasser at Addenbrookes, and had one surgery there too. Who

is your Dr and why did it take them so long to diagnose you?

> > Can you tell us a little bit more about yourself please, like age group and

name?

> > Welcome to this group, I hope you'll find a wealth of information and

support.

> > Becky

> >

> >

> > ________________________________

> > From: amblackadder <amblackadder@>

> > samters

> > Sent: Tuesday, 4 October 2011, 23:25

> > Subject: Prednisolone and migraines

> >

> >

> >  

> > Hello, have just joined today. Been a samters sufferer for 19 years, only

decent diagnosis from Addenbrookes about 6 years ago. Have had 10 ops on polyps,

septum,turbinates etc,etc and was told that next time (!) I have surgery they

will have to use a robot as there are no markers left up there to guide the way!

> > I have had aspirin desensitization treatment and was doing well on 1 and a

half aspirin a day, with singulair, flixonase nasules, sinus rinse and symbicort

for my asthma. But got ill and messed up my medicines.

> > Latest load of prednisolone was ok for about 5 days though felt like i had

indigestion like symptoms and slight nausea. Then got terrible migraine and

vomiting for 2 days so messed up my medicines again! Can't seem to get straight

now. Tried prednisolone again , after 2 days migraine and vomiting again!!

Help....these steroids have been my lifeline. Now what shall I do. Feeling

really down. Aspirins down to zero now.

> > I am from the UK are there many other Samter's sufferes out there I feel so

alone.

> >

>

[Guest guest]

Yes, McKiernon is the man I was thinking of...except he was away for my op so i had an Indian man who's name is unpronouncable, but he was excellent, if a little too thorough and cleared away my sos receptors too. They are a good team there, that's for sure.I live in the country in NE Somerset, near Wells. The air is pretty good here.I ended up mostly desensitising myself as Dr Nasser does it very slowly. Also, I've had 2 ops since and have had to go down to 75mg for the ops, so desens my self at home again after. But I know Dr Nasser is at the end of the phone for me if needed. No side effects really from the aspirin except slightly acidy tummy from time to time, especially when on

steroids.BeckyFrom: amblackadder <amblackadder@...>samters Sent: Sunday, 9 October 2011, 20:09Subject: Re: Prednisolone and migraines

Thanks Becky,

You've done really well with your aspirin! Do you find it has any side effects? What part of the country are you from? I was wondering if being land locked in the middle of the country has anything to do with it? Poor air quality etc? Maybe we should all move to the seaside!! I would try desens again but feel a bit guilty about how costlyit must be. I think I have McKiernon for ENT at Addenbrookes. He was v. good. Don't really want another op for a long time tho.

> >

> > Hi there,

> > I'm from the UK and there are quite a few of us here from the UK. I live in Somerset but see Dr Nasser at Addenbrookes, and had one surgery there too. Who is your Dr and why did it take them so long to diagnose you?

> > Can you tell us a little bit more about yourself please, like age group and name?

> > Welcome to this group, I hope you'll find a wealth of information and support.

> > Becky

> >

> >

> > ________________________________

> > From: amblackadder <amblackadder@>

> > samters

> > Sent: Tuesday, 4 October 2011, 23:25

> > Subject: Prednisolone and migraines

> >

> >

> > ÂÂ

> > Hello, have just joined today. Been a samters sufferer for 19 years, only decent diagnosis from Addenbrookes about 6 years ago. Have had 10 ops on polyps, septum,turbinates etc,etc and was told that next time (!) I have surgery they will have to use a robot as there are no markers left up there to guide the way!

> > I have had aspirin desensitization treatment and was doing well on 1 and a half aspirin a day, with singulair, flixonase nasules, sinus rinse and symbicort for my asthma. But got ill and messed up my medicines.

> > Latest load of prednisolone was ok for about 5 days though felt like i had indigestion like symptoms and slight nausea. Then got terrible migraine and vomiting for 2 days so messed up my medicines again! Can't seem to get straight now. Tried prednisolone again , after 2 days migraine and vomiting again!! Help....these steroids have been my lifeline. Now what shall I do. Feeling really down. Aspirins down to zero now.

> > I am from the UK are there many other Samter's sufferes out there I feel so alone.

> >

>

[Guest guest]

Yes have worked. Just need to avoid aspirin ! Sent from my iPadOn 9 Oct 2011, at 20:05, "amblackadder" <amblackadder@...> wrote:

So glad it went well, I have had Mr Commins too!He's really nice. Not heard of betnelan is it a leukotene can't spell that! Like singulair?

Will you get desens at Leicester? It's not too bad they keep a very close eye on you. Will be worth it. Must say I do feel like a freak myself. Have you managed to work all these years with samters? All the best. Anne-Marie

> > >

> > > > Hello, have just joined today. Been a samters sufferer for 19 years, only decent diagnosis from Addenbrookes about 6 years ago. Have had 10 ops on polyps, septum,turbinates etc,etc and was told that next time (!) I have surgery they will have to use a robot as there are no markers left up there to guide the way!

> > > > I have had aspirin desensitization treatment and was doing well on 1 and a half aspirin a day, with singulair, flixonase nasules, sinus rinse and symbicort for my asthma. But got ill and messed up my medicines.

> > > > Latest load of prednisolone was ok for about 5 days though felt like i had indigestion like symptoms and slight nausea. Then got terrible migraine and vomiting for 2 days so messed up my medicines again! Can't seem to get straight now. Tried prednisolone again , after 2 days migraine and vomiting again!! Help....these steroids have been my lifeline. Now what shall I do. Feeling really down. Aspirins down to zero now.

> > > > I am from the UK are there many other Samter's sufferes out there I feel so alone.

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

Thanks that's really interesting. So does that mean you have no sense of smell

and taste at all? I haven't really had any for about 19 years now, just brief

returns. I also had an acid stomach on the prednisolone/aspirin which made me

feel pretty queasy. not sure whether to risk desensitising myself though!

> > >

> > > Hi there,

> > > I'm from the UK and there are quite a few of us here from the UK. I live

in Somerset but see Dr Nasser at Addenbrookes, and had one surgery there too.

Who is your Dr and why did it take them so long to diagnose you?

> > > Can you tell us a little bit more about yourself please, like age group

and name?

> > > Welcome to this group, I hope you'll find a wealth of information and

support.

> > > Becky

> > >

> > >

> > > ________________________________

> > > From: amblackadder <amblackadder@>

> > > samters

> > > Sent: Tuesday, 4 October 2011, 23:25

> > > Subject: Prednisolone and migraines

> > >

> > >

> > >  

> > > Hello, have just joined today. Been a samters sufferer for 19 years, only

decent diagnosis from Addenbrookes about 6 years ago. Have had 10 ops on polyps,

septum,turbinates etc,etc and was told that next time (!) I have surgery they

will have to use a robot as there are no markers left up there to guide the way!

> > > I have had aspirin desensitization treatment and was doing well on 1 and a

half aspirin a day, with singulair, flixonase nasules, sinus rinse and symbicort

for my asthma. But got ill and messed up my medicines.

> > > Latest load of prednisolone was ok for about 5 days though felt like i had

indigestion like symptoms and slight nausea. Then got terrible migraine and

vomiting for 2 days so messed up my medicines again! Can't seem to get straight

now. Tried prednisolone again , after 2 days migraine and vomiting again!!

Help....these steroids have been my lifeline. Now what shall I do. Feeling

really down. Aspirins down to zero now.

> > > I am from the UK are there many other Samter's sufferes out there I feel

so alone.

> > >

> >

>

[Guest guest]

Yes, pretty much...my sos and taste occasionally and randomly returns a fraction - i can sometimes smell onions frying, but I'd say I had about 1-2% awareness of smell and taste at very best and 0% most of the time.We are supposed to take an antacid when on aspirin/steroids, but I only take it when absolutely necessary.BeckyFrom: amblackadder <amblackadder@...>samters Sent: Tuesday, 11 October 2011, 10:10Subject: Re: Prednisolone and migraines

Thanks that's really interesting. So does that mean you have no sense of smell and taste at all? I haven't really had any for about 19 years now, just brief returns. I also had an acid stomach on the prednisolone/aspirin which made me feel pretty queasy. not sure whether to risk desensitising myself though!

> > >

> > > Hi there,

> > > I'm from the UK and there are quite a few of us here from the UK. I live in Somerset but see Dr Nasser at Addenbrookes, and had one surgery there too. Who is your Dr and why did it take them so long to diagnose you?

> > > Can you tell us a little bit more about yourself please, like age group and name?

> > > Welcome to this group, I hope you'll find a wealth of information and support.

> > > Becky

> > >

> > >

> > > ________________________________

> > > From: amblackadder <amblackadder@>

> > > samters

> > > Sent: Tuesday, 4 October 2011, 23:25

> > > Subject: Prednisolone and migraines

> > >

> > >

> > > ÂÂÂ

> > > Hello, have just joined today. Been a samters sufferer for 19 years, only decent diagnosis from Addenbrookes about 6 years ago. Have had 10 ops on polyps, septum,turbinates etc,etc and was told that next time (!) I have surgery they will have to use a robot as there are no markers left up there to guide the way!

> > > I have had aspirin desensitization treatment and was doing well on 1 and a half aspirin a day, with singulair, flixonase nasules, sinus rinse and symbicort for my asthma. But got ill and messed up my medicines.

> > > Latest load of prednisolone was ok for about 5 days though felt like i had indigestion like symptoms and slight nausea. Then got terrible migraine and vomiting for 2 days so messed up my medicines again! Can't seem to get straight now. Tried prednisolone again , after 2 days migraine and vomiting again!! Help....these steroids have been my lifeline. Now what shall I do. Feeling really down. Aspirins down to zero now.

> > > I am from the UK are there many other Samter's sufferes out there I feel so alone.

> > >

> >

>

[Guest guest]

Thanks, I went back to my GP after talking to Dr Nasser again, and she

prescribed me an antacid, since then I've been able to take the prednisolone

again with no problem.

It's a strange thing the loss of SOS, I really can't tell anything at all

including really strong chemicals etc. Hope I don't poison the family with my

cooking!!

> > > >

> > > > Hi there,

> > > > I'm from the UK and there are quite a few of us here from the UK. I live

in Somerset but see Dr Nasser at Addenbrookes, and had one surgery there too.

Who is your Dr and why did it take them so long to diagnose you?

> > > > Can you tell us a little bit more about yourself please, like age group

and name?

> > > > Welcome to this group, I hope you'll find a wealth of information and

support.

> > > > Becky

> > > >

> > > >

> > > > ________________________________

> > > > From: amblackadder <amblackadder@>

> > > > samters

> > > > Sent: Tuesday, 4 October 2011, 23:25

> > > > Subject: Prednisolone and migraines

> > > >

> > > >

> > > > ÃÆ'‚ 

> > > > Hello, have just joined today. Been a samters sufferer for 19 years,

only decent diagnosis from Addenbrookes about 6 years ago. Have had 10 ops on

polyps, septum,turbinates etc,etc and was told that next time (!) I have surgery

they will have to use a robot as there are no markers left up there to guide the

way!

> > > > I have had aspirin desensitization treatment and was doing well on 1 and

a half aspirin a day, with singulair, flixonase nasules, sinus rinse and

symbicort for my asthma. But got ill and messed up my medicines.

> > > > Latest load of prednisolone was ok for about 5 days though felt like i

had indigestion like symptoms and slight nausea. Then got terrible migraine and

vomiting for 2 days so messed up my medicines again! Can't seem to get straight

now. Tried prednisolone again , after 2 days migraine and vomiting again!!

Help....these steroids have been my lifeline. Now what shall I do. Feeling

really down. Aspirins down to zero now.

> > > > I am from the UK are there many other Samter's sufferes out there I feel

so alone.

> > > >

> > >

> >

>

[Guest guest]

Hi Becky,

You mentioned that you desensitized yourself, would you mind telling me the

procedure that you used. I went through the process about 11-12 years ago in La

Jolla but ended up quitting the daily aspirin, now I would like to give it a try

again but would rather do it on my own.

Thanks, Gail

> > >

> > > Hi there,

> > > I'm from the UK and there are quite a few of us here from the UK. I live

in Somerset but see Dr Nasser at Addenbrookes, and had one surgery there too.

Who is your Dr and why did it take them so long to diagnose you?

> > > Can you tell us a little bit more about yourself please, like age group

and name?

> > > Welcome to this group, I hope you'll find a wealth of information and

support.

> > > Becky

> > >

> > >

> > > ________________________________

> > > From: amblackadder <amblackadder@>

> > > samters

> > > Sent: Tuesday, 4 October 2011, 23:25

> > > Subject: Prednisolone and migraines

> > >

> > >

> > >  

> > > Hello, have just joined today. Been a samters sufferer for 19 years, only

decent diagnosis from Addenbrookes about 6 years ago. Have had 10 ops on polyps,

septum,turbinates etc,etc and was told that next time (!) I have surgery they

will have to use a robot as there are no markers left up there to guide the way!

> > > I have had aspirin desensitization treatment and was doing well on 1 and a

half aspirin a day, with singulair, flixonase nasules, sinus rinse and symbicort

for my asthma. But got ill and messed up my medicines.

> > > Latest load of prednisolone was ok for about 5 days though felt like i had

indigestion like symptoms and slight nausea. Then got terrible migraine and

vomiting for 2 days so messed up my medicines again! Can't seem to get straight

now. Tried prednisolone again , after 2 days migraine and vomiting again!!

Help....these steroids have been my lifeline. Now what shall I do. Feeling

really down. Aspirins down to zero now.

> > > I am from the UK are there many other Samter's sufferes out there I feel

so alone.

> > >

> >

>

[Guest guest]

Hi Gail,When re-desens myself, I was actually starting off from already being on 75mg/day for 2 weeks, so I was already starting from a dose which was higher than my reactionary dose which was 40mg. I would not desens myself from taking no aspirin, on my own. When I did go up my daily doses from 75mg all the way back up to 600mg/day, I took a daily dose of 10 or 15mg prednisolone to help dampen down my symptoms, and I upped my doses, doubling a dose and staying at that new dose for 3days, then increasing by 150mg. So I'd go from:75mg to 150mg/day and be on 150mg/day for 3 days, then up to 300mg for 3 days, then 450mg for 3 days and then 600mg , all the while taking a daily dose of 10 or 15mg prednisolone. When I've

been on 600mg for 3 days I'd stop taking the prednisolone (cutting down from 10mg one day to 5mg the next, then no pred.) and find I am fully desens again.Experience has shown us all that we react the wirst to the smallest doses, so starting off initially is the most difficult part. I would recommend you find a Dr ho can start you off in a hospital environment, and when you are up to about 150mg, it is easier to take the desens from there, doing it yourself at home.I'd be interested to see what others think about this. It is a controversial topic, doing desens oneself as it carries a lot of risk.Best wishes,BeckyFrom: "gbroderick@..." <gbroderick@...>samters Sent: Sunday, 16 October 2011, 20:49Subject: Re: Prednisolone and migraines

Hi Becky,

You mentioned that you desensitized yourself, would you mind telling me the procedure that you used. I went through the process about 11-12 years ago in La Jolla but ended up quitting the daily aspirin, now I would like to give it a try again but would rather do it on my own.

Thanks, Gail

> > >

> > > Hi there,

> > > I'm from the UK and there are quite a few of us here from the UK. I live in Somerset but see Dr Nasser at Addenbrookes, and had one surgery there too. Who is your Dr and why did it take them so long to diagnose you?

> > > Can you tell us a little bit more about yourself please, like age group and name?

> > > Welcome to this group, I hope you'll find a wealth of information and support.

> > > Becky

> > >

> > >

> > > ________________________________

> > > From: amblackadder <amblackadder@>

> > > samters

> > > Sent: Tuesday, 4 October 2011, 23:25

> > > Subject: Prednisolone and migraines

> > >

> > >

> > > ÂÂÂ

> > > Hello, have just joined today. Been a samters sufferer for 19 years, only decent diagnosis from Addenbrookes about 6 years ago. Have had 10 ops on polyps, septum,turbinates etc,etc and was told that next time (!) I have surgery they will have to use a robot as there are no markers left up there to guide the way!

> > > I have had aspirin desensitization treatment and was doing well on 1 and a half aspirin a day, with singulair, flixonase nasules, sinus rinse and symbicort for my asthma. But got ill and messed up my medicines.

> > > Latest load of prednisolone was ok for about 5 days though felt like i had indigestion like symptoms and slight nausea. Then got terrible migraine and vomiting for 2 days so messed up my medicines again! Can't seem to get straight now. Tried prednisolone again , after 2 days migraine and vomiting again!! Help....these steroids have been my lifeline. Now what shall I do. Feeling really down. Aspirins down to zero now.

> > > I am from the UK are there many other Samter's sufferes out there I feel so alone.

> > >

> >

>

[Guest guest]

Thanks Becky, I think I'll take your advice and find me a local doctor who can

help me out.

Gail

> > > >

> > > > Hi there,

> > > > I'm from the UK and there are quite a few of us here from the UK. I live

in Somerset but see Dr Nasser at Addenbrookes, and had one surgery there too.

Who is your Dr and why did it take them so long to diagnose you?

> > > > Can you tell us a little bit more about yourself please, like age group

and name?

> > > > Welcome to this group, I hope you'll find a wealth of information and

support.

> > > > Becky

> > > >

> > > >

> > > > ________________________________

> > > > From: amblackadder <amblackadder@>

> > > > samters

> > > > Sent: Tuesday, 4 October 2011, 23:25

> > > > Subject: Prednisolone and migraines

> > > >

> > > >

> > > > ÃÆ'‚ 

> > > > Hello, have just joined today. Been a samters sufferer for 19 years,

only decent diagnosis from Addenbrookes about 6 years ago. Have had 10 ops on

polyps, septum,turbinates etc,etc and was told that next time (!) I have surgery

they will have to use a robot as there are no markers left up there to guide the

way!

> > > > I have had aspirin desensitization treatment and was doing well on 1 and

a half aspirin a day, with singulair, flixonase nasules, sinus rinse and

symbicort for my asthma. But got ill and messed up my medicines.

> > > > Latest load of prednisolone was ok for about 5 days though felt like i

had indigestion like symptoms and slight nausea. Then got terrible migraine and

vomiting for 2 days so messed up my medicines again! Can't seem to get straight

now. Tried prednisolone again , after 2 days migraine and vomiting again!!

Help....these steroids have been my lifeline. Now what shall I do. Feeling

really down. Aspirins down to zero now.

> > > > I am from the UK are there many other Samter's sufferes out there I feel

so alone.

> > > >

> > >

> >

>

[Guest guest]

Hi Carol,My consultant is Dr Nasser in Addenbrookes, Cambridge. As Mike said, Dr Glenys Scadding does the aspirin desense into ones nose, and much smaller doses are needed. You may like to ask about this. Dr Scadding and Dr Nasser do liaise with each other about their Samters patients.I didn't realise someone on here lived so close to me - i live just south of Bristol, in a village called Farrington Gurney.BeckyFrom: Carole Ann

son <caroleanndavidson@...>"samters " <samters >Sent: Tuesday, 18 October 2011, 9:35Subject: Re: Re: Prednisolone and migraines

Hi Becky I live in Bristol. Am waiting for a referral to Glenis Scadding at ENT hospital London for possible desens. Who is your consultant?From: Bannister <beckyb256@...>"samters " <samters >Sent: Monday, 17 October 2011, 16:15Subject: Re: Re: Prednisolone and

migraines

Hi Gail,When re-desens myself, I was actually starting off from already being on 75mg/day for 2 weeks, so I was already starting from a dose which was higher than my reactionary dose which was 40mg. I would not desens myself from taking no aspirin, on my own. When I did go up my daily doses from 75mg all the way back up to 600mg/day, I took a daily dose of 10 or 15mg prednisolone to help dampen down my symptoms, and I upped my doses, doubling a dose and staying at that new dose for 3days, then increasing by 150mg. So I'd go from:75mg to 150mg/day and be on 150mg/day for 3 days, then up to 300mg for 3 days, then 450mg for 3 days and then 600mg , all the while taking a daily dose of 10 or 15mg

prednisolone. When I've

been on 600mg for 3 days I'd stop taking the prednisolone (cutting down from 10mg one day to 5mg the next, then no pred.) and find I am fully desens again.Experience has shown us all that we react the wirst to the smallest doses, so starting off initially is the most difficult part. I would recommend you find a Dr ho can start you off in a hospital environment, and when you are up to about 150mg, it is easier to take the desens from there, doing it yourself at home.I'd be interested to see what others think about this. It is a controversial topic, doing desens oneself as it carries a lot of risk.Best wishes,BeckyFrom:

"gbroderick@..." <gbroderick@...>samters Sent: Sunday, 16 October 2011, 20:49Subject: Re: Prednisolone and migraines

Hi Becky,

You mentioned that you desensitized yourself, would you mind telling me the procedure that you used. I went through the process about 11-12 years ago in La Jolla but ended up quitting the daily aspirin, now I would like to give it a try again but would rather do it on my own.

Thanks, Gail

> > >

> > > Hi there,

> > > I'm from the UK and there are quite a few of us here from the UK. I live in Somerset but see Dr Nasser at Addenbrookes, and had one surgery there too. Who is your Dr and why did it take them so long to diagnose you?

> > > Can you tell us a little bit more about yourself please, like age group and name?

> > > Welcome to this group, I hope you'll find a wealth of information and support.

> > > Becky

> > >

> > >

> > > ________________________________

> > > From: amblackadder <amblackadder@>

> > > samters

> > > Sent: Tuesday, 4 October 2011, 23:25

> > > Subject: Prednisolone and migraines

> > >

> > >

> > > ÂÂÂ

> > > Hello, have just joined today. Been a samters sufferer for 19 years, only decent diagnosis from Addenbrookes about 6 years ago. Have had 10 ops on polyps, septum,turbinates etc,etc and was told that next time (!) I have surgery they will have to use a robot as there are no markers left up there to guide the way!

> > > I have had aspirin desensitization treatment and was doing well on 1 and a half aspirin a day, with singulair, flixonase nasules, sinus rinse and symbicort for my asthma. But got ill and messed up my medicines.

> > > Latest load of prednisolone was ok for about 5 days though felt like i had indigestion like symptoms and slight nausea. Then got terrible migraine and vomiting for 2 days so messed up my medicines again! Can't seem to get straight now. Tried prednisolone again , after 2 days migraine and vomiting again!! Help....these steroids have been my lifeline. Now what shall I do. Feeling really down. Aspirins down to zero now.

> > > I am from the UK are there many other Samter's sufferes out there I feel so alone.

> > >

> >

>

[Guest guest]

Hi BeckyWe are near, I am in Horfield. Thanks, I will ask about this - not aware of the difference in ways to desens. I must do some looking into - I have had a 3 year unhelped journey through the systems. Was told by GP recently that there was nowhere else to go - had seen the alergist consultant and that was it. I was in Southmead hospital with pnuemonia bout and had a conversation with a pharmacist who gave me info re a consultant called Dr Mark Gompels. I asked GP to see him and GP didnt like the fact that a pharmacist had spoken to me but I got to see him and he is refering me to Dr Scadding. I would love to hear more about this desense into the nose if you or anyone else has the

time.ThanksAnn xFrom: Bannister <beckyb256@...>"samters " <samters >Sent: Tuesday, 18 October 2011, 15:00Subject: Re: Re: Prednisolone and migraines

Hi Carol,My consultant is Dr Nasser in Addenbrookes, Cambridge. As Mike said, Dr Glenys Scadding does the aspirin desense into ones nose, and much smaller doses are needed. You may like to ask about this. Dr Scadding and Dr Nasser do liaise with each other about their Samters patients.I didn't realise someone on here lived so close to me - i live just south of Bristol, in a village called Farrington Gurney.BeckyFrom: Carole Ann

son <caroleanndavidson@...>"samters " <samters >Sent: Tuesday, 18 October 2011, 9:35Subject: Re: Re: Prednisolone and migraines

Hi Becky I live in Bristol. Am waiting for a referral to Glenis Scadding at ENT hospital London for possible desens. Who is your consultant?From: Bannister <beckyb256@...>"samters " <samters >Sent: Monday, 17 October 2011, 16:15Subject: Re: Re: Prednisolone and

migraines

Hi Gail,When re-desens myself, I was actually starting off from already being on 75mg/day for 2 weeks, so I was already starting from a dose which was higher than my reactionary dose which was 40mg. I would not desens myself from taking no aspirin, on my own. When I did go up my daily doses from 75mg all the way back up to 600mg/day, I took a daily dose of 10 or 15mg prednisolone to help dampen down my symptoms, and I upped my doses, doubling a dose and staying at that new dose for 3days, then increasing by 150mg. So I'd go from:75mg to 150mg/day and be on 150mg/day for 3 days, then up to 300mg for 3 days, then 450mg for 3 days and then 600mg , all the while taking a daily dose of 10 or 15mg

prednisolone. When I've

been on 600mg for 3 days I'd stop taking the prednisolone (cutting down from 10mg one day to 5mg the next, then no pred.) and find I am fully desens again.Experience has shown us all that we react the wirst to the smallest doses, so starting off initially is the most difficult part. I would recommend you find a Dr ho can start you off in a hospital environment, and when you are up to about 150mg, it is easier to take the desens from there, doing it yourself at home.I'd be interested to see what others think about this. It is a controversial topic, doing desens oneself as it carries a lot of risk.Best wishes,BeckyFrom:

"gbroderick@..." <gbroderick@...>samters Sent: Sunday, 16 October 2011, 20:49Subject: Re: Prednisolone and migraines

Hi Becky,

You mentioned that you desensitized yourself, would you mind telling me the procedure that you used. I went through the process about 11-12 years ago in La Jolla but ended up quitting the daily aspirin, now I would like to give it a try again but would rather do it on my own.

Thanks, Gail

> > >

> > > Hi there,

> > > I'm from the UK and there are quite a few of us here from the UK. I live in Somerset but see Dr Nasser at Addenbrookes, and had one surgery there too. Who is your Dr and why did it take them so long to diagnose you?

> > > Can you tell us a little bit more about yourself please, like age group and name?

> > > Welcome to this group, I hope you'll find a wealth of information and support.

> > > Becky

> > >

> > >

> > > ________________________________

> > > From: amblackadder <amblackadder@>

> > > samters

> > > Sent: Tuesday, 4 October 2011, 23:25

> > > Subject: Prednisolone and migraines

> > >

> > >

> > > ÂÂÂ

> > > Hello, have just joined today. Been a samters sufferer for 19 years, only decent diagnosis from Addenbrookes about 6 years ago. Have had 10 ops on polyps, septum,turbinates etc,etc and was told that next time (!) I have surgery they will have to use a robot as there are no markers left up there to guide the way!

> > > I have had aspirin desensitization treatment and was doing well on 1 and a half aspirin a day, with singulair, flixonase nasules, sinus rinse and symbicort for my asthma. But got ill and messed up my medicines.

> > > Latest load of prednisolone was ok for about 5 days though felt like i had indigestion like symptoms and slight nausea. Then got terrible migraine and vomiting for 2 days so messed up my medicines again! Can't seem to get straight now. Tried prednisolone again , after 2 days migraine and vomiting again!! Help....these steroids have been my lifeline. Now what shall I do. Feeling really down. Aspirins down to zero now.

> > > I am from the UK are there many other Samter's sufferes out there I feel so alone.

> > >

> >

>

[Guest guest]

I answer this old post a bit late : have you looked at the excipients or the

salts of this particular prednisolone drug ? For instance, there was an article

saying that succinate salts were poorly tolerated by some patients. Is there

anything in the composition that changed between the old and new prednisolone

drugs that you used ?

>

> Hello, have just joined today. Been a samters sufferer for 19 years, only

decent diagnosis from Addenbrookes about 6 years ago. Have had 10 ops on polyps,

septum,turbinates etc,etc and was told that next time (!) I have surgery they

will have to use a robot as there are no markers left up there to guide the way!

> I have had aspirin desensitization treatment and was doing well on 1 and a

half aspirin a day, with singulair, flixonase nasules, sinus rinse and symbicort

for my asthma. But got ill and messed up my medicines.

> Latest load of prednisolone was ok for about 5 days though felt like i had

indigestion like symptoms and slight nausea. Then got terrible migraine and

vomiting for 2 days so messed up my medicines again! Can't seem to get straight

now. Tried prednisolone again , after 2 days migraine and vomiting again!!

Help....these steroids have been my lifeline. Now what shall I do. Feeling

really down. Aspirins down to zero now.

> I am from the UK are there many other Samter's sufferes out there I feel so

alone.

>