Serbo

Hi all Wasn't sure which thread to post it seems there are lots of MCAD threads now! Julie - I'm sorry to hear about your death in the family. For Issie, Im non' hyper pots, however adrenaline testing i had was from lying to sitting so may need a repeat. I am still pursuing a very probable MCAD diagnosis following an allergic reaction to a tiny dose of Fludro, a pro biotic and then seemingly everything! So far I have had 2 random urine Methyl Histamine samples taken a week apart, both at around 600 or 301 methyl hist/creatine ratio. I actually felt non reactive when they were taken, no hives or anything. Tryptase was normal at 2.51 both times. Apparently my RAST test shows that i'm mainly reactive to grasses, and immunoglobulin E level is 128 KIU/L (Not sure how to interpret that?). Next tests are repeat Methyl Histamine and Diamine oxidase testing. In the UK they do not do 4 hour collections for methyl Hist, but Dr has suggested now that he has base readings for me to expose myself to stimulus before next sample. Some questions for those that are diagnosed/suspected MCAD: Do you react to non typical allergens, e.g petrol/diesel/chemical smell? Is your reaction a typical allergic one or nausea/BP drop etc? Have your Dr's talked to you about chemical sensitivity disorders? I ask because i'm not sure if there's a cross over here between chemical sensitivity disorders and MCAD, or is it even the same thing? I haven't yet found an anti histamine that i can take and am extremely reactive to drugs so the Dr thinks i may have this to. I read that with MCAD people react in 2 ways, those that have essentially anaphlaxis in reaction to stimuli and big increase in methyl histamine reading, or those that are in a chronic state, High base line methyl histamine and although reactive do not have anaphylaxis. One other question - How do you all react to after shave/perfume? I got in a taxi today and the driver had OD'd on aftershave, as soon as i got in it was as if i breathed it all in. Big warm feeling, and sudden tachy almost instantly, followed by irritated throat i think, found myself coughing a lot. Obviously had a reaction, could breath through my nose normally but throat was irritated. If one was in anaphylaxis presumably breathing through the nose easily wouldn't be possible, or you'd feel tight in your chest? - What i'm getting at is, i don't know if that was a chemical sensitivity response, or an MCAD one or even the same thing!!? Had a real stressful week at work and with Dr's appointments/travelling etc, and noticed that stress can dictate how responsive i am to stimulus (e.g dogs), and even cause facial flushing/rashes. Has there been research done on the role of pro longed stress/anxiety/trauma and effect on MCAD/Chemical sensitivity? Cant help but feel there's a link here. My allergist asked me about breathing during reactions. I only think i have ever had breathing problems once, and even then possibly could have been a panic response due to the sudden reaction, but can some one please tell me what true breathing difficulties feel like during an attack? i told him about and doesn't think it's necessary to pursue epi pen based on my account. May even be to sensitive to the Epi pen anyway? sorry for the long rambling post, but needed to vent after this week. Feeling like a medical anomaly with pots/eds III, mcad (?), diabetes insipidus, and a chemical sensitivity problem. Hoping that Nasalcrom helps when it's prescribed Have a good christmas everyone! Aaron

weekly on line shop for me! And on busy standing room only trains or wherever crouch down and pretend to look in my man bag!

Hi Ruby Just wondering what type of EDS you have? I have III, but i do wonder if i cross over. i seem to bleed really easily. most recently i have been waking up with nosebleeds, i think due to being out in the cold a lot and i wonder if thats has upset my throat or something. i some times feel a fluttering or pulsing in different areas of my abdomen so i do wonder about aneurism. I mentioned it to my EDS doc and he looked at me like i was a weirdo. he says you don't see it in EDS III. On the subject of congenital heart defects, yes i was born with an extra nerve pathway in the heart which caused arythmia's and had to be removed. Apparently there's no link between that and eds/pots though.

from experience does anyone know if the ambulance guys would look in your wallet automatically if they found one in a state? Im all for carrying a card in the wallet, but no point if they wouldn't look there. I wouldnt mind wearing a bracelet but havent found a good one for men yet.

Ram - Sorry to hear you had the relapse. The only time I have had something similar is when i completely over did it on salt. Was in a restaurant and then had everything you described. Polyuria went crazy (and I am on DDAVP!). Suspected I had had to much salt (hyponatremia?) so after the faint tried to even things out by taking more DDAVP and eating a few banana's to even it out with potassium. Took about 3 days to feel back to normal again. Mentioned this to my endo and she couldnt really explain it, but dehydration induced electrolyte imbalance perhaps? Whatever happened to me sounded similar and took a few days to recover.

i try and walk every day, even if its for 3 hours at night solid, or half an hour in my living room, has to be done. Only thing i have noticed is that walking for 30 minutes twice a day is as effective as once for 2 hours. I also do light weights when i can, or exercise 1 muscle group each day. I have noticed though i have lost a lot of weight, im a guy down from 13 stone to 10.5 stone in about 3 months. steady state cardio burns fat alright, but realising with pots it might be better to have a little fat left on you so when GI issues hit you dont lose even more weight! Seeing my EDS doctor in early Jan, and want to ask about getting back to heavy weights! I used to be a 14 stone body builder and i miss it.

went veggie, for a week, it messed me up! think the animal protien helps. I only eat fish and chicken really.

I think every one feels them differently. I have never had 1 surge that has been the same as another! I have had very powerful surges that last less than 10 seconds, and others which lasted a night. increase in HR is the main thing i notice but also that background powerful adrenaline feeling. Having had arrhythmia's in the past the surges remind me of the feeling of when you go in an arrhythmia, but HR not as fast, and regular.

yep - i see purple and blue flashes of light in my vision, mostly @ night

thanks Nina, was thinking of something like these, but the goretex fleece lined might be better! http://www.orvis.co.uk/store/product.aspx?pf_id=3P5C&dir_id=466&group_id=488&cat_id=8540&subcat_id=6986

i love winter, but it think because of the EDS have extremely cold hands when i walk at night for a couple of hours, had 2 pairs of gloves on yesterday and still cold! Any EDSers or people with cold hands recommend a winterproof glove?

^ central DI relates to lack of production in ADH due to pituitary gland, straight forward DI is due to kidneys being unable to process the ADH. So UIs etc, probably only linked to the kindney origin DI. Central DI patients sometimes have a growth or damage to their pituitary, or like me your pituitary can be normal and they can't distinguish between POTS frequent urination and central DI. I think the vast passing of urine in central DI is due to sympathetic excess. In central DI patients they are up all night going to the toilet like a tap that won't turn off, in my case and others its relived by lying down! I sleep through the night.

took a break from strict paleo following some gasteoparesis (lost just under a stone), now eating Paleo and gluten free cakes to put some weight on. ate sugary gluten free cakes/biscuits for 4 days, put on 4.5 lb, and my skin has gone horrible and low BP much worse, I think it's all the sugar, additives and vegetable oils that do as much harm as the gluten! Been fun eating gluten free cakes now, got a sugar addiction again, amazing how powerful that stuff is!

i get blue palms occasionally, suspect its because of having hands above head

so those with hyper pots would you pass a TT if BP goes up? Excusing that your HR would be very high from standing still. Can some one tell me what type of POTS i may have based on: BP stays the same or initially increases on Tilt, then drops to point of fainting after 10 - 15 mins. HR increases above 30 BPM on tilt. I am hypovolemic, I have the diabetes insipidus diagnosis, treated with DDAVP. I have all the allergy problems,meds sensitivity, possibly MCAD I have adrenalin rushes but not that often any more I have EDS 3 Waiting on norephrine test results, so unsure where i fit yet. In the UK they generally only diagnose POTS, not the sub types. Thanks

thanks julie - Hope your feeling better from the gluten free crash you had.

Hi, I have just had a Gatroscopy, 8 biopsies taken and the dr who did it agreed with me that gasteopareis is likely. There was a good deal of food still in my stomach. I think I have had gasteopareis in the past and it's passed after a while. I have a follow up with my dr next week so will look at meds then if I have to. In the mean time I think I have read to avoid nuts and seeds, is that true? I think I have read meat is ok, avoid dairy and gluten. I am gluten and dairy free anyway so that's fine. Will work on getting a good pro biotic when I see a dietician. Have also read it plays havoc with sugar levels, is that the case with all patients who have it or just diabetics? May explain why I am so sensitive to sugar. The only thing that seems to help at the moment is going for a walk as soon as I start to feel stomach pain. Problem is I am losing so much weight all ready and doing a couple of hours walking a day is killing even more calories. Not sure how to balance this. Thanks

Hi, yep, have had this. I decided to stop omeprazol as it wasn't working, just stop it with no taper. mistake. After about 3 days regurgitated/vomited everything then came the blood. Like you I went to hospital, given pain killer, IV saline, IV omemprazol to stop the acid, and a drug to stop vomiting, and a valium. Was supposed to have a gastroscopy but never did. I was undiagnosed @ this point and it healed rapidly. was fine for quite a while. however yesterday actually developed stomach pain, and i suspect gasteoparesis, getting a gatrsocpy tomorrow. I have EDS 3, but i think its an EDS thing. Have learnt my lesson, don't over eat or stop PPI!

diabetes insipidus - and DDAVP is an ADH hormone replacement given to treat central diabetes insipidus

Thank you for the replies. Janie -Thanks, I get bloods done every 6 months and always has been fine, but I think your on to something. As I had taken no salt for 2 days that's probably what did it.

Hi - Just wanted to know if what I have been experiencing is normal or others have similar episodes. I had major GERD/digestion issues a few days ago which were causing tons of ectopic beats, so i ate very cleanly for the last 2 days and ectopics have eased off. Have just been eating veg and potatoes pretty much for the last 2 days. I have had 0 salt. Today I got some left sided chest pain and felt dizzy suddenly, checked on BP monitor and cardiac output was pretty low for me. 52 HR, 108/60 BP. I am on DDAVP which no doubt stopped my BP going any lower. So i just had some salt and chest pain has gone and cardiac output returned to normal levels. Does anyone know why one would experience chest discomfort with an electrolyte imbalance? I know that reasons for low BP and chest pain in POTS patients are not clear. Thanks Aaron

Thanks lieze Yeah about 10 months, was funny up to about 3 months, ok mainly and now this. Think it's to do with reflux or something, but never had this many ectopics before

Hi, bumping this up. I had an ablation in feb for AF/AVRT. For 2 days now been having lots of ectopics, some runs of 3 or so and doubles. Hard to say how many, but at least a few an hour. I fear this is the ablated pathway growing back. The ablation was the pots trigger for me. Has anyone had pots from the ablation then gone on to have another ablation?

Thank you Michelle I think I will ask for the Bravo. I have an EGD on Friday. Have had 1 in the past without sedation, will also have this one without sedation. I don't mind them as long as the throat is numb to get past the gag reflex.

thanks Todd, will do, good idea