sj75

Thankyou, thats very reassuring. I think if they ask me to eat the chestnut i would be inclined to refuse as the outpatient clinic im going to for the appointment is just a small private one without an a and e or itu. I was wondering if they may need the chestnut to use it for the skin prick test? or to combine with a blood sample???

i now have an appointment with an immunologist for the 21st. In the meantime ive got clarityn and benadryl should i need it. Has anyone got any idea what i should expect from the appointment?? Ive been told not to take the clarityn for 48 before the appointment and if i can get hold of any of the chestnuts to take them with me!!! this has me quite worried, i hope they are not going to make me eat one while im there???? Has anyone had the skin tests? how safe are they?? can they trigger anaphylaxis? what other tests should i expect?

i agree Tilly. My mum has been in a wheelchair from when i was a toddler due to failed spinal surgery so ive grown up with a full time wheelchair user and seen both the positive and negative sides for my mum. Ironically i ended up having to get a wheelchair after a particularly bad flare up at around the same age my mum became wheelchair bound and after having looked after my mum for most of my child/adulthood it caused me huge issues. I refused to use it and feared losing my independance. After spending weeks indoors because i couldnt get out and didnt want to have to use a wheelchair i realised that the thing i feared (loss of independance)had already happened and that actually using a wheelchair gave me some of it back. I think we should always fight against using wheelchairs if we dont need to but sometimes its a means to an end and if i need mine i think of it as a temporary measure until i have the strength to manage without it.

The sachets sound like a really great idea, annoyingly they arent available over here. Ive got an appointment at the gps on monday but in the meantime am going to take my once a day clarityn and if anything happens will also take the benadryl.x

Well i have spoken to my insurance helpline and to allergy uk who have both also said i should carry a pen. Allergy uk said i should attend an allergy clinic (which are apparently few and far between in the uk). They also said that gps in the uk are reluctant to prescribe the pens due to the cost!! if it came to it im happy to pay for one but am sure it must cost the nhs more to treat those who have had an allergic reaction when they have not had a pen.

thanks guys, im not sure how i can pursue this over here (uk) as we dont have allergists so to speak but i think i could be referred to a different specialist who can deal with it. The problem i think i have is that in order to see a specialist i have to be referred by the gp - who clearly doesnt think thats necessary. I know i can buy epipens online but would rather go the proper route and get proper medical advice. I do have private insurance although i know the referral procedure is the same, i think i will ring them for their advice though.x

Following on from my allergic reaction to chestnuts (throat swelling)I spoke to one of my surgeries gp's yesterday who has told me to avoid chestnuts (slightly obvious i thought-lol)and that i should probably try and avoid all nuts now as im likely to become allergic to nuts in general?? has anyone else been told this and is this likely to be the case? he has said that he doesnt think i need an epipen as these should only be used in people who collapse due to their allergy as they dont help with the swelling and i should just carry piriton or clarityn around with me. I said i had heard that each exposure would create a worsening reaction but he said he didnt think this was the case. What does everyone think to this?? it seems to contradict things i have heard previoiusly, should i try and get my own epipen just in case? nearly forgot to mention- he also said that i may notice my existing allergies will get better?? is this right??

have moved this post to a new thread.xx

im going to stock up on benadryl, would it be wise for me to contact my gp and ask for an epipen just in case??

Is benadryl generally better than loratidine/clarityn for these types of reactions?

im glad its not just me (although not if you know what i mean). ive been scared to eat anything today. I did a lovely slow cooked beef stew and dumplings last night and couldnt bring myself to eat it just in case, its currently being reheated for my family but i dont think i can bring myself to eat it after yesterday and with it being the first time ive used that recipe with ingredients i havnt had for a long time. I can see my pots leading to an eating disorder (amongst other things) at this rate.x

I havnt tried benadryl but have clarityn to try. The swollen feeling was so scary, this whole pots/allergy thing makes it so hard to 'get on' with life.x

i guess ive always been someone with allergies but its never really caused me any problems i couldnt manage before. As a child i was badly allergic to milk and eggs (gastic problems), im allergic to bee stings (not anaphylactic) and a few other foods but ive always been a bit sinusy but nothing major. Last year all that seemed to change and im now wondering if others have noticed their allergies suddenly progress or if this could be a sign of mcad?? or something else pots related. I had been on flecainide for heart arrhythmias for 3 and a half years when suddenly last year i developed a serious reaction (intense chest pain/fainting/blood pressure difficulties)to it and it had to be stopped. Since then i seem to react to most meds i have although i have not had anaphylaxis. Last night i ate a couple of roasted chestnuts which i have always eaton ( a christmas tradition in our house) without a problem and within minutes the back of my mouth and back of my nose felt very swollen and uncomfortable, within a few hours i had intense burning in my gullet and stomach and although today it has calmed down it still feels a bit odd at the back of my throat. Im wondering if im just being paranoid as since my reactions last year i have been a little anxious about getting allergic reactions, could it have been anything else?? or could this be a progression of allergies??

i love this thread but cant really add much other then to say that when im at home during the day i wear comfy jogging bottoms/tee shirt that i can sleep in if i need to but that dont look like pj's if anyone comes to the door. Moisturiser is a must as my skin gets really dry but make up only if im going out (which isnt a lot at the mo).x

ok, so ive been really poorly for over a month now and much as i am not a huge fan of over monitoring things due to the paranoia it creates in me i caved and have been keeping an eye on things (bp, pr and o2 sats). I have had some extremely freaky readings and wondered if i am alone on this. I am going to monitor for a little while and if things continue as they are i will contact my dr. My bp has been like a pendulum swinging from the extremely high 169/140!!!! to the low 100/50. My pulse rate has had periods of swinging from the 150's (240 once)to 29 at one point and my o2 sats can dip as low as the low 70's when i am walking. I would like to get a guage of what sorts of extreme readings others have had in the hope that i find im not so extreme?? p.s the equiptment ive monitored with is all hospital grade and has been calibrated.x

has it helped? 10mls in one go sub cut seems like a lot to me? but 50 mls daily of soduim chloride (im assuming its 0.9%)isnt a lot so im not sure if it would make much of an impact but hey if its something that you find works then i would carry on.x

i could be completely wrong but didnt it turn out that he didnt have autism but a neurological condition that had symptoms resembling autism?? sure i read that somewhere.x

well the good news is i dont have to have the final 2 jabs. It was decided that as i have developed systemic neurological symptoms that it was a definite no no. I have been told that 3 plus immunoglobulins is enough to protect me anyway?? so my next question is in that case why do they give 5?? think im just being paranoid that im actually not covered but dont think they would risk leaving me exposed to rabies neuro symptoms or not so probably need to just relax and stop stressing about the whole thing now.x

thanks so much for that info. I will have to try and get hold of that book, our son was only diagnosed early this year and im beginning to think asd is almost as much of a minefield as pots. My son has a love of cheese that borders on obsessional. I really need to look at how to get him off it i think!

its something that seems to run in my family. Mine was always on the very upper end of normal or just above. Since being a child i have suffered the most horrendous nose bleeds at times and interestingly felt much better after i have been freed of some of the 'red stuff' at the end of a nose bleed. Since having my son (12 years ago now) my rbc has been more normal and the nose bleeds are very few and far between. No idea why though.x

Well my gp was really good. He is going to contact the people in London to try and find out if we have any alternative to the last 2 jabs. He has said that if we go ahead he will prescribe steroids, clarityn and ranitadine. Fingers crossed there is an alternative as i feel soooo ill and am really stressed out by the whole thing.x

Hi guys, Just wondering if anyone gets this before passing out?? ive had a couple of episodes over the last few weeks and have noticed that i get a really hot strange feeling in my throat/back of nose and then a funny sort of smell moments before i get the feeling im going to pass out? Ive been under the weather anyway due to having rabies vaccines (discussed in another post) but this is new to me and im trying to find out if its specifically due to the jabs im having or if its something that happens fairly commonly before people pass out??

I could be wrong but my understanding is that prof. Mathias team in London are one of the best. Ive heard they get patients in for full autonomic testing and studies but im not sure how loong the wait is. Im not sure what it would take for you to get a referral but i guess you would have to have a gp referral. Who diagnosed you in Ireland? would they be willing to contact London? I understand Sheffield are doing some really good work with pots patients to.x

the thing ive noticed with my son is that when he eats even quite normal things he gets a type of 'high' where he is virtually bouncing off the walls. Any idea what causes this and if its a type of food sensitivity reaction? he hasnt had any gi symptoms for ages but used to get a lot of nausea and diarrhoea that he had ranitadine and mebeverine for.x

Thankyou, i really hope they dont make me have the last 2 but think its unlikely. For 4/5 hours after the last jab my bp went up and down like a yo yo. The highest ive ever seen it and then lower than ive seen it since i was a teenager. Have no idea whats with the collapsing and numbness as these are not listed as side effects anywhere. Thankyou for the link i will have a look there. Unfortunately the nurse cant get back to us until tommorow afternoon so no further forward on that front.Really really scared.x