brethor9

Hey Frugal Sorry to here your appointment at the Hamilton clinic didnt go very well ..... I know they are struggling to find more specialists to help keep up with the demand. Funny enough the first time I went I had another fellow also...a female who could barely speak english and was so completely rude to me that I wanted to smack her after the first 10 mins as she attributed all of my symptoms to stress after having a partial hysterectomy (that I asked for...duh!!!) anyway she was not the brightest so I complained and kept calling and leaving messages explaining that nothing she suggested helped my symptoms and more testing needed to be done aside from the TTT. The next time I went back I was seen by Dr. Guzzman (who I dearly love and wish you could see!) and thats when things turned around. Originally I was supposed to see Dr. Morillio himself but it was changed at the last minute. I suggest that you call them and ask to see Dr Guzzman as that is who you were originally to see and that you feel your care would be better handled by him or even Dr Morillio.....in regards to the inderal/propranolol it is being used for POTS and in fact I was just recently started on it under the care of Dr Guzzman and my cardio/internist....so that is definately not true lol! Maybe your fellow needs to go over your case with Dr Guzzman and Dr Morillio.....also have they tried you on florinef with the BB....sometimes the two meds together cancel the side effects out. Good luck and be persistant with them!!! Hugs Bren

exactly! me too.....I figure we feel so drugged and crappy the next day as a result of adrenaline crashing.....one of my specialists referred to these lengthy episodes as catecholamine dumping syndrome....makes sense to me.... Bren

upper and lower GI/colonoscopy found gastritis, chronic inflammation and and large reactive lymphoid aggregates.....the last part apparently are not common to the part on the bowels it was found in....concerned my doc so much he tested for lymphoma (scary) he still cannot explain why they are there or what is causing the inflammation. Only had blood test for H Pylori not breath test Bren

Hi My worst episodes came at night...adrenaline surges that would wake me from sleep with pounding head pressure,chest pain, pain in left arm,sweating, loss of balance, heart rate through the roof, shakes so bad, sweating and then chills so bad...these episodes would last for hours and were utterly exhausting and terrifying...over time they have lessened or maybe I have learned how to cope with them better..... not really sure Bren

Hi Lieze I am also going through a bad bout of this right now.....hurts to even breathe in not sure what is causing it but boy it hurts....I have been contemplating going to ER just to rule anything out....again hang in there...hope it gets better for you soon Bren

Hi all Just curious since I read it in so many posts....what exactly is EDS and what are the symptoms most people suffer? Thanks Bren

awesome job lette!!! Bren

Thanks Julie! I will give the Zyrtec a couple more days but really do feel like I am having a reaction to it lol!! I have been itching like crazy, tachy, lightheaded, etc. Yesterday was a better day and I was still taking the aerius....I have been doing some reading and notice every anthistamine has a different chemical make up so I guess it is a matter of trial and error. I am going slow with everything and adding one drug at a time...it could just be my body not liking the changes so if I dont do well with the Zyrtec that means I cant take atarax at all ever?? even if say claritan works? sorry this is very confusing..... Bren

Thanks guys! Ruby; I have been semi diagnosed by my internal medicine doc who is also a cardiologist and oncologist and deals with mast cell stuff....he also consulted with Dr. Afrin in South Carolina by phone. He has started the protocol based on clinical manifestation and historical background....he has known my undiagnosed symptoms for many years.....we are trying to have testing done but I live in a small city in Ontario, Canada and unfortunately we dont have a lot of Mast Cell specialists. My internist probably knows more than most around here he is quite brilliant (he did do a flow cytometry last year as he was concerned about lymphoma but it came back negative) he is ordering a skin biopsy and may do a bone marrow at a later date...... I just started the Zyrtec today and have to say I feel like crap and am itching, flushing and warm all over, chest tightness. It actually feels like I am reacting to the antihistamine lol!!! not good...now I have to wait for it to get out of my system.....I think I will go back to using my aerius and maybe up the dose and go from there. sigh...it can never be easy with us thanks for the support Bren

Hey Tennille Just wanted to let you know in regards to you saying to your doc that you pee out more thaan you take in?? I am TOTALLY the same way!!! I can never understand where all the liquid could be coming from and then on other days I wouldnt hardly pee at all even if I drank the equivalent of niagra falls....weird....my drs could never make sense of it either and always made it seem like I was causing it somehow. Just wanted to let you know you arent the only one I have just in the last few days been told by my docs that I may have mast cell issues so I am hoping once I get the protocol worked out my symptoms will start to stabalize. Glad to hear you are finding a little relief Bren

Hi all So just recently my auto dr and internal specialist have come to the determination that I could be suffering from some sort of Mast Cell issue on top of POTS. They have started me on an MCAD protocol but I am having some undesireable side effects and could use some input.....to any other Masties out there did you suffer side effects at first and just bull your way through? The protocol I am on is the following; 5-10 mg Zyrtec (this makes me feel super dizzy, sleepy and just out of it, chest tightness) 150mg zantac 2 x daily (this I have been taking for years and am ok on it) 10 mg Singulair (helps with the chest tightness but am experiencing headache and lightheadedness) 25mg atarax (to be taken at night, havent started yet...trying to add one med at a time) 0.25mg florinef daily (stable on this dose) before I started the Zyrtec I had actually gone back to taking my aerius for kids which I have never had issues with and successfully took it for my allergies long before POTS....I dont have any side effects with it at all but it has a completely different chemical makeup from Zyrtec and not sure if its ok to take instead? The worst thing is like everyone else with POTS I have unbelievable med sensitivity so even though I know my body needs these meds its fighting them every step of the way. I am also not sure of the timing of all of these meds?? I know I shouldnt take them all at once but how do you know how to stagger them out? Any input is very appreciated Thanks Bren

Hey Naomi! Hugs! Just wanted to sympathize!! I too have this as my 24/7 worst symptom for almost 5 years......it is horrible to walk around feeling stroke-like symptoms every minute of the day....I would love to get some relief from it one day Hang in there... Bren

Emma I get what you are describing all the time!!! pain in the chest, left arm right up into the neck....I actually get pain in the neck veins and feel like I am being strangled from the inside out....horrible feeling and I am always sure each time it happens its going to be the last.......but Im still here I have asked my cardio dr about this and he feels it is related to the high adrenaline, POTS and the possible MCAD I may have. I find the best thing that works for me is to take something that relaxes my system and I find after awhile things will settle down. Also do you suffer from acid reflux at all because believe it or not that stuff can cause wicked nasty symptoms!! even heart related symptoms. Maybe try taking a Zantac and see if it has any effect on your symptoms? I hope this passes for you soon! and just know you are not alone Bren

My POTS came on pretty much right after I had a partial hysterectomy.....I have always felt it was the trigger somehow and could be hormone triggered Bren

Thanks Dani! I think it worked Bren

Hi all! So I went back to my auto specialist on Thurs to see him about some new and worriesome symptoms I have been having over the last couple months; severe joint and muscle pain, rashes, night sweats, heat flushes, nausea, D, etc.....my auto dr isnt that familiar with mast cell so is going to try to refer me for some testing. My local internist strongly suspects mast cell (he has background in oncology, cardiac, internal) and says he has seen these rashes before......I have wanted to post some pics for awhile to see if any of you masties get these similar markings....I have attached a link....hope it works....I tested it...it should take you to the pictures. I would really appreciate anyones input..... Bren http://s1191.photobu...s/z479/brethor/

Hi Wondering if anyone can tell me how I can download some pictures onto a post or of that is possible? I have some pictures of rashes I have been experiencing and I wanted to get some feedback from the Masties out there.....any ideas Bren

Hi Julie I just wanted to let you know when I went gluten free over a year ago I was horribly ill for the first couple of months....felt like an out of body experience!! I think its true that it can feel like detox....I read an article at the time that compared gluten to opiates in people who are sensitive to it and that some people could have severe withdrawal symptoms because their brain is craving it so bad.(I was a HUGE carb eater! couldnt get enough...looking back that seems to be a clue) For me most of my digestive symptoms really settled down and some of the brain fog. Now if I eat a piece of bread I can definately feel the ill effects after....maybe you just have to give your system a little longer....and take it slow dont cut everything out all at once! Maybe just start with bread and work from there....hugs...feel better! Bren

oh my gosh lette dont worry about that! worry about you!!! that does not sound like a good episode....hope you are okay? get better soon....hugs Bren

Thanks guys! I am seeing my auto specialist Thurs so I will definately review it with him.....how can one body be in this much uproar so fast??? this illness is scary! Bren

yes lol! polka dots exactly....ahhh brain fog.....

That kind of episode used to happen to me alot when I was having adrenaline storms....I still have them every so often....not nice hugs Bren

yes me too! mine also go spotty.....red and white dotted pattern everywhere.....charming

good luck lette!! you will do us proud!

Hi Julie Thanks! All these symptoms are really starting to concern me also.....especially since they just cropped up over the last month or so and are rapidly progressing...something is definately wrong!! Thank god my appt is thursday! I havent started my singulair yet because I have a tooth infection and I am taking antibiotics and to be honest I am really scared to do anything right now! Tinks- hope you get some answers soon also hugs!! Bren