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Everything posted by Serbo

  1. Hi Tennille, well done for getting the tickets. Having been an avid raver/clubber for many years prior to POTS, the only thing I could advise is dont be nervous (easier said than done!) prior to the event, but set your self up with a contented happy mindset about the whole thing. It will be loud, and there'll be a big old sound system etc but I think if you focus on the music and that this band are your favourite you'll be fine. Hope to go to Glastonbury Festival myself here in the UK next time its on (2013), fingers crossed!
  2. Thanks Issie To those with MCAD - I wanted to ask do you get any psychological disturbances? not necessarily during a reaction or with trigger just in general? I have probable MCAD and for the last few days have been feeling just not quite right. Not necessarily in allergic state, but my train of thought has been altered, dont know if it could be called brain fog as such as I can engage in tasks and conversation OK, BP is normal for me, vision OK, not particularly fatigued, perhaps its just a conscious feeling of not being quite right or with it mentally? If i focus on it it drives me in to a panic and i had to leave work today because of it, quite scary. Have had an "upset tummy" for the last week pretty much all the time so thinking it could be an electrolyte imbalance. The only other thing I have changed is my sleep pattern. Increased from 6 to 8 hours per night for the last week, sleeping earlier and waking earlier, not sure if that could create this feeling. Depersonalization could be a word used to describe it, but even then that's not quite right.
  3. Issie - What do you eat now when you need a sugar fix? Have quickly realised that sugar is a trigger for me.
  4. thanks all, but subjective as it is, please can someone tell me what their experience of brain fog feels like? e.g does it come with fatigue, could you still exercise with brain for for example? Is it constant, or if yu were to engage on some work or with some one in conversation would it go away? Do you feel a disassociation to stream of thought? Just want to get a handle on what it feels like. Thanks
  5. Hi - Can someone describe brain fog to me please, like what does it feel like? Thanks
  6. I have a hyper POTS question which i'm hoping someone can answer easily, and it's pertinent to MCAD... I get the feeling now that Hyper POTS/EDS and MCAD sit very well together. I suspect i may be hyper due to the EDS/MCAD and suspected central diabetes insipidus diagnosis (chronic hypovolemia). Please can someone tell me what the specific testing/diagnostic criteria is for hyper POTS? I have had the serum noradrenaline testing, but i was feeling very rough so was only from lying to sitting up, not standing. This gave normal results. As I had a reaction to Fludro i suspect next treatment will be midodrine but i understand hyper POTS patients shouldn't use this drug. I want to make sure i'm not hyper before getting started on it. Thanks
  7. Godsgal - Has the program helped gastric mast cell issues? I.e can you eat what you want to now or just smell what you want to! thanks
  8. built up from 0 minutes walking per day, up to 2/3 hours per day occasionally. i could literally walk for 5 minutes initially and then built up very gradually. May not be able to do a couple of hours every day but try to do at least an hour. it's taken about 10 months. I built it up daily, almost minute by minute. Was very very hard to get to an hour, like learning to walk again! But then once there was easier to build on. The only pointers i coud offer is walk daily if you can, whatever you can do. Even if it's just doing circuits round your living room slowly. i Still pace round my estate now, even just my road. helps build confidence if you are nearer to home i found. also i basically bicep curl a 1.5 litre water bottle when im walking from arm to arm. I figure it pumps blood to the arms and stops pooling, but i think even squeezing a ball would do it. Listening to an audio book helps to as it keeps your mind off it to some extent which is good. easier when you get lost in a book and go in to autopilot. 1 other thing, it helped me a lot to look at the floor initially. not good posture but it made me less dizzy.
  9. Thanks for the link Nina. In my own experience this has come on with an allergy/mast cell problem so suspect its another facet of MCAD and psychological stress!
  10. Not yet. Same situation, it's really annoying me. Got in to a taxi driver's car the other day who had smogged the car full of aftershave, couldn't breath, tachy, low bp, flushing etc! Only thing i can say is get in the fresh air as soon as you can after a reaction, even then it doesn't always help. polished some shoes yesterday outside and still got very faint. went for a walk for half an hour which helped. Not sure why but also washing the face seems to help me a bit after. Does the cromolyn your on not help? Presuming it's a MAST cell stabiliser. Really hoping this sensitivity will go away soon as quickly as it came.
  11. Julie - I tried to message you but it says i can't send you a message for some reason. Perhaps try messaging me first?
  12. One of my goals for 2012 (after sorting MCAD issues) is to stop or reduce my dose of Omeprazole. I am on 20mg twice a day and have been on that for probably almost 2 years now. It doesn't really seem to do much for me and i still get chest pain anyway. As it stands I can't even miss a dose without a huge adrenaline response and a lot of nausea. when i tried to simply stop before i developed bleeding and had to be given it IV. If i forget to take it i get huge amounts of adrenaline/anxiety and the nausea follows shortly after. I am an EDSer with slow gastric emptying and i suspect that this is really the problem. Recently had a endoscopy which was fine, biopsies also all OK, gut hormone profile show high levels of gastrin which is seen on PPI's. I have an isolated elevated liver enzyme which may be due to long term use of Omeprazole. So I wondered has any one else been on this drug for a long time and got the same "withdrawal" symptoms, or managed to reduce dosage and stop? My Neurogastro has actually advised me to stay on it, but i really don't want to be on it long term, and certainly not on the dose i am. P.S have read tons about people in general having problems trying to stop this drug. Thanks Aaron
  13. Got hit hard on Friday by some sort of a reaction to oats, ended up in hospital. No breathing issues, but was drenched in sweat, shaking with cold and a very low temperature, facial flushing, body rashes etc. Was quite scary as not hd that before. ER doc wanted to give me adrenaline and a steroid but by the time i got to see them things had started to calm down so i declined because of medicine sensitivities and not being in anaphylaxis. Felt very faint all of yesterday, had a good sleep and been better today. went for a couple of hours worth of power walking today! Annoyingly though ER docs couldn't so serum tryptase or urine methyl histamine sample, but i did get them both done on saturday AM. Only started feeling rough yesterday after the blood draw, think i had so much blood removed the last couple of days it did me in! I am certain i have MCAD/MCS, even the smell of air freshner made me feel dizzy for about an hour today, same with polish, aftershave, petrol. Part of the problem is anxiety though not knowing what is a genuine trigger and what is not. Hopefully results this week or next. My POTS Dr sent me a paper he wrote yesterday on POTS and EDS III, it's 13 pages and due to published in the neurology section of the Nature journal. Might have already been published. Interesting the link between EDS, POTS and MCAD. It might be that it's EDS/MCAD that sit together and POTS alongside.
  14. are you on a PPI? Might help with the nausea/acid and not have to eat so frequently
  15. yes fine thanks. It was weird because even though it was a big explosion it was over quickly. The house was just out of view when it blew and strangely there was no smoke. i had thought a plane had crashed or something, then when police, ER helicopter showed up 5 mins later i realised what had happened. On the subject of adrenaline rushes, i got a 1.5 hour train in to london tonight to go meet some freinds at a bar, managed to last about 20 minutes until the noise, etc became to much. Annoying! I didnt really have tachy just very aware if the noise and over stimulated, would it be a BB or an SNRI that i would need to be able to function in that environment? no tachy really so not sure a BB would be right Thanks
  16. Hi Maggie, sorry to hear about the anxiety, hope you can keep it under control. I was curious to read about your liver enzyme problem. I am the same in that I am very reactive to medication. In an LFT test my ALT enzyme is always isolated. Were your LFTs out of whack which lead to your liver problem diagnosis? Thanks
  17. been eating gluten free christmas cake/pudding, mince pies etc. No gluten symptoms but the sugar rushes aren't fun!
  18. Carol - Also, rice milk is the same for me, goes straight through me. No reaction other than not being able to digest it previously. it's so sweet, maybe something to do with the sugar. Am better with soy milk but don't really drink it or eat soy these days.
  19. off to look for a medical/bracelet chain in the new year once i have a clearer picture. WRT traditional allergies MCAD aside, please could someone help me decipher this from my derma. i don't have results just this letter but i'll be chasing for results in the new year: "I enclose the result of this man's immunoglobulin E level that creeps in to the atopic range with a value of 128 KIU/L. This is a lowish increase however but does indicate mild atopic susceptibility. The RAST test shows he is reactive to grasses so that you would expect upper respiratory tract problems to be the main symptom." The last part makes sense, i have hay fever, but not sure what to take from his statement in regards to other allergies or what the immunoglobulin E level means. anyway - happy Christmas all, hope it's as good as it can be . Went out for a walk earlier and noticed how clearly i can smell tress, hedges, bushes etc, and although it made me light headed and dizzy it's a stark contrast to most of those around me who are bunged up with colds and flu and can't smell a thing!
  20. ^ i'm sure this hypersensitive state we face is not helped by stress. I can induce facial flushing, tachy, rash etc from stress. Even at these times i feel like i haven't had a reaction, those around me including Dr's have asked what i had just reacted to! Each time i get these MCAD flares it's due to stress/stimulation, when i'm not in a flare i can stand by my dogs and be comfortably in the same room as them (not able to pick them up yet), but then during a flare can't even stand still for 30 seconds next to their beds without a sudden BP drop. As i can't take any drugs for this, i have to be honest, during reactions only 2 things help, lying down and meditating or having a shower, not sure why but it always seems to help. Carol - Are you not on MAST cell stabilisers? Nasolcrom etc, sounds like you might benefit from the gastric version, gastrocrom i think its called. not sure. Julie - will pursue the pen, your right, if ever at the stage where it has to be used I'd want to call an ambulance anyway. Does anyone wear medical bracelets or the like which disclose the MCAD diagnosis? As it's so niche i'm not sure that a paramedic would be aware of it or MCS's implications, i.e hyper sensitivity to drugs. At the same time to simplify i wouldn't want to put on the bracelet that i had a true allergy to certain drugs, which in a car wreck or something could save your life.
  21. Thank you for the reply and the link Julie. A wealth of information on that site! I shall spend a few days reading through it, and after my upcoming labs will be tooled with questions to ask my Dr. I am not averse to using epi pen if i had to, but I need the Drs to be certain that the tachy is MCAD caused. Having had heart rhythm problems in the past I'd be worried a big dose of Eph could do me in if it wasn't needed! Having had VT at 240 BPM whilst fluttering in and out of AF I can empathise with you, being in that state and close to pass out is not nice. My baseline urine methyl histamine could be around 600, i hope not! But these 3 more separate samples I am giving should provide a good baseline, and for the third one i'm going to take an item covered in dog dander to the lab and give it a smell before the sample. A very crude way to induce a reaction, but in the UK the 4 hour urine collection test is not possible. Just single samples.
  22. Thanks for your reply Issie. I am exactly the same with food. some times they trigger a reaction, some times they dont. You can get over the counter histamines here but I have had some issues with them to, so waiting until all test results are in place taken at baseline to decide how to proceed. Zirtek made me have drop attacks and tachy, ended up in hospital until it dyed down. Loratadine i can take if i have to, but it gives me tons of ectopic beats and i keep waking up during sleep on it. hopefully will find one which works!
  23. i'm told these are due to bp dropping when trying to sleep contrasting with the excess adrenaline! Worst "sudden" one i had yet was earlier this week, a house a street away from mine blew up randomly (gas explosion). I was out the front at the time, my house shook from the explosion and my chest/whole body. Was crazy!
  24. I have EDS, the worst i ever got them was with uncontrolled low BP and being in a hypovolemic state whilst trying to do a complicated task, e.g talk to people standing, or even sitting. Only really get them when anxious or dehydrated now
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