Dear All .

Over the last few months several comments have been made about vestril and the NIH using it for brain fog and intersisial cystitis. Despite my current meds my brain fog remained with classics such as forgetting what I was watching during the ad breaks and more coupe moments than ever . I call them coupe moments , where I cant find a word ,even though I use it all the time . This is because I was trying to expalin to hubby about a coupe car I had seen on top gear and I couldn't remember the word - not estate , not saloon .............................. urrgghhh .  

Regards the cystitis , I have had protien in my wee since all this began in July 08 , with no UTI ( water works infection ) at that point or many others over the last 2 years . When I had frequency , I had suffered from cyctistis from the age of 15 .

I have started vestril - liquid preparation - 25mg at night - xxxx I am on day 3 and I am more myself . I am not as foggy at all > i dont have to make an effort to be me  I am not on the loo as much , my nurses bladder returning I know its early days. I am also sleeping better but not drowsy in the day

The drowsiness of the type 1 histamine blockers only seems to affect me when I am not soaked in hisatmine = never . I lie . It worked as a pre med for me before theatre last febuaury .

My tummy was completely down this morning . My extra bleeding has stopped .

I will post as things change monday will bring doxipin as that was the other recommendation  

Josie

Hi Ramona ,

Thanks doll . i will suggest twice a day to my GP . I am not suffering drowsy wise so another dose is likely to be tolerated . . i woke at 2 am itchy and retchy. piriton did the trick . Waking means my bucket is very near full . So everything helps .

I am getting a rash that i suspect to be UP . One of the GP's can do a biopsy , as they are dermo's on a local level . So I hope to have that done monday .

hugs
Josie

Hi All

Just come back from my GP he has increased my vestril to 25mg twice a day So I will let you know how I do .

many hugs
Josie

Hi Lisa,

Thank You I am doing Ok today . its 4pm here and I am not symptomatic as I have been , so this mornings dose seems to be helping . My brain fog has gone  .

Testing wise Dr Grattan tested for hashi's ( throid ) adrenal autoimmune disease , Lupus and myloma ( again ) . he did a tryptase .
The tryptase was normal :-3 and all the other tests negative other than a continued high ESR . MY CRP and ESR have been raised since the beginning of all this in August 08.  

So idiopathic Angiodeama has been diagnosed . The new doc's , here in Bristol have reviewed all my notes from here and Sussex . This has highlighted my pins and needles in my hands in 1999 and bowel problems investigated in 2006 with a barium enema . With normal results .

The new docs wish that we continue having more tryptases taken . Also IGG and compliment when i present to A&E . They do not have the evidence of anphylaxis in discharge summeries from hopsital . My recordings of my 999 ( 911 ) calls and paramedic paperwork have the evidence so I am waiting for them to arrive .  This , I hope will settle this in the doctors minds . they are worried about mis diagnosing me and I understand that .

Given that they recommended the vestril , so they are going with the treatment for idiopathic angiodeama .

The vestril as I said is helping . Alongside the brain fog going , my stomach is down a lot more than bloated . I am seeing wrinkles where I didn't know I had them

I have lost weight from the 19st 10lb i was at my heavyest The GP can see I am not depressed or panicing as i was flushed in his office - high pink not burning red

So , we shall see the new consultants opinion . On may 31st.

I showed my GP my new rashes . he felt the one that looked like a blood blister is a spider nevei . I am thinking maybe TEMP , as temp spots dont urticate ( dariers sign ) . Regards the little red dots which are increasing in number daily - he said - show Dr Gommpels . So Maybe Temp or UP .

Investigations outstanding are :- parasites . I was working in mc donalds the week i got ill ( 3 days my shortest job ever ) . Our cat also caught fleas and was visiting a local flat with occupants from eastern europe and the middle east . The fleas bit me , i am a jucy customer for fleas - they like me . So it is feasable I caught a vector bourne illness .

I was desperetly thirsty working on lobby , handing sulphite rich foods , lots of .  

So I will ask this question .

My diabetes needs better control as my sugars are running high . This causes degraualteion in me over 24 mmol/l . Uk CBG - below 3 hypoglycemic . 4-9 ok 10 and ablove hyperglycemic . 20 and over at risk of hyperglycemic serious issues .

My 3 monthly HAB1c , was 9.4 , much better than my nighttime blood sugar would suggest . I am seeing an endocrinologist for discussion of this , my cholesterol , which is 8.6 . It is mainly triglcerides due to my poor glycemic control , so lower sugars = lower cholesterol for me . medication will be intersting . The immunocologist reg ( one below consultant ) said NO stains ( simvatain etc ) they avoid them . I haven't tolerated fibrates so my med options are limited . They will also discuss my not working adrenals , which i am on replacement steriods for . This is at the same level as my body should produce each day , so I am not having any steriod side effects and have shifted 3 stone (42lb ). The last endocrinologist said if you need them carry on . My 9 am cortisol , which measures natural adrenal function ) is still NIL so I suspect I will continue to need the replacement steriods .

My diabetes shines a major magnifying glass on my angiodeama .

So may will be interesting

I am in spring and have avoided ED so far . The last 2 yrs I have been in 6 and 5 times thru march and april each yr . So being cautiously optomistic as singulair , ranitidine and now hyroxizine have been added . I am avoiding avoiding avoiding and am infection free at the moment so my risks are as low as I can make them

hugs

Jose

Now an hour later my tummy has started , cramp , swell and quick to the loo . But it has stopped at that . No major flush or chest follow up . So overall better than I have been .

May major bonus is less shock as the longer I go the stronger I am to deal with daily symptoms and to do stuff .