mom4cem

I know some of you get episodes where things just really flare up. I do too. I just had one the other day where I could feel the adrenaline just slowly start to kick in and of course the heart began to do its racing dance and the b/p goes all over the map, the chills are there, sensitivity to light etc. Afterwards, how do you feel? How long till you feel somewhere near where you were feeling before the flare/crash. I have trouble sleeping that night, my mind gets the surges also as well as the rest of my body. My heart will do funky things with these surges too. All night. The next day can be the same,,surges and the chills just seem to come and go for a few days. I can't wait to get a somewhat restful night sleep again.

Sorry about the insurance business, I hope your gastro doc at home is ready for ya! Glad to hear you are on your way home today. Have a safe trip.

That's great news. Hope you are back on your feet soon!!! That's great news. Hope you are back on your feet soon!!!

A weakend LES could be what he means. Lower esophageal sphincter. It is a muscle also and if it weakens, which some foods can etc, it allows the acid to come back up into the esophagus. PPI meds can help like nexium, prilosec, prevacid etc. Also change of diet or staying away from things that seem to aggravate it. Hopefully the nexium will help and you can spared any more tests.

Sorry I missed the post,,,, so Happy Belated Birthday! Hope you are feeling better and make sure you celebrate later when you are feeling better. I do that plenty of times What are you playing Mario 2

Sorry to hear the gastro visit was not helpful. I also would second the family medical leave act as well as contacting a patient advocate in the hospital. To find the right doctor who can see that some don't always feat neatly in the box, that there is a gray area where many fall and seem to get lost in. If it is not a textbook case, some can't see outside the box. I hope Dr. Low will be able to give some insight and have some other suggestions. Please send her my support and hugs.

Sorry to hear that you had to give up your job. Very nasty of that administrator to put it into terms like that though. He/she could have been a bit more compassionate when telling you your job is in jeopardy since you have been ill so often. I know it seems like you give more and more of your life up to just get by every day but keep the faith that things will turnaround. Hopefully you will be able to get unemployment due to the nature of you ultimately being forced to leave. Hope you feel better soon.

Jacquie, Hopefully this is just a bad patch you are going through and it will pass. It's good that all the dr's will be in the same place on the same page. It's tough to bounce around from one place to the next and wonder if your latest reports etc, have made it from one place to the next. Hope you feel better.

Hi John, I was hoping from when I last spoke with Linda that things were looking up but I take it from your post, her eating did not get any better despite the steroid. I'm hopeful that she has some good dr's on her case and that some treatment plan will come out of this. I'm thinking of her.

I hope the tubes work for ya. I could eat cereal for days for each meal, but my hubby and kids want something different,,why I don't know!!lol

Hi, From what I understand supraventricular tachy is a broad term that encompasses several tachys. IST, PAT, AVNRT and a few more. At least that is what I understood. I also was told that if they are not sure what rhythm it is they put SVT. If they know it is a sinus tachy or some other type then they list the specifics. I don't know if this is 100% correct. I'm sure cardiatec can clarify this as well as a few others here can too.

Have had the flu shots for several years even after the dysatuonomia become more pronounced. I'm fighting a cold now and feel miserable with the tachy etc, the thought of having the flu with this I'll get it again and usually it is in Oct. If I remember correctly they base when to give it on where the flu has been popping up and when they think it will get to certain areas. It also takes a week or two for the body to build up.

sorry you are not feeling so well. I don't know how far along you are, but with any luck you will past the 16week mark and notice an improvement in naseau. As for blood volume, usually you notice the increase by the 22nd week, once again I don't know how far along you are, so maybe if you have not reached that mark, you perhaps may feel better. My first was horrible with heartburn. My second pretty good. My third, well there I was on bedrest for 2months, my ankles and legs swelled which I never had before in either pregnancy but, this was the first time i was pregnant during the summer months so the weather could be a factor for you also. Hope you feel better soon, and as for your OB,,hey, if he is worth anything then he will listen and do anything and everything he can to make this as smooth as possible.

Good for you,,keep on

Thanks Nina, I'll pass it on.

Hi, I never personally took it, though I walked around with the bottle in my pocketbook for ages. Here is one of the links I found that people posted about it. http://dinet.ipbhost.com/index.php?showtopic=572&hl=

Hi MM and all, Linda told me she has some specific allergies which she has eliminated such as dairy. She has really limited to what she can eat or take as medication. I also mentioned the Mast disorder. Sounds like her system is very much on overload and is overacting to everything. Perhaps a good environmental/food allergist might have some insight. I'll have to mention that to her. It is just so difficult to Dr. shop as we all know, especially when you feel time is running out. I will let her know,,thank you all.

Hi, I spoke to Linda this evening. I was surprised by her call as we had not spoken yet but had corresponded and I had given her my #. For all of you who remember and those who don't LindaJoy had been diagnosed with EE, eosinophilic Esophagitis after a lengthy stay at Cleveland clinic. I was glad to hear from her but very sad to hear what she is going through. She is too ill to do anything, not even enough strength to go on the computer. She asked if I would post what is going on and if anyone has any ideas at all or can come up with a name of someone they think can help her. Please let me know and I will get it to her or if you wish, Linda gave me the o.k. to give her # if you want to contact her directly. She is losing weight quickly. A pound a day. She is now down over 20 pounds from what she was and they don't know why. She has been experiencing a cascade of symptoms after ingesting certain foods and even medications some of which are intense head and back of head pressure, temples hurt badly. Whole head and face feel full of pressure. Her heartrate and bloodpressure spike up. Sometimes her eyes go blurry. Her leg muscles feel like they are quivering, sometimes she has had this in her arms also, but mainly in her legs. She does still eat, limited but does eat, and is still losing weight. GI problems of heartburn, diarrhea. Dizzy, rash over her cheeks and nose(sounds like lupus but she has been checked), burning rash over her back and shoulders and she feels hot. Her armpits will itch. Her local doctor and GI doctor don't know what to do with her yet they will not admit her into the hospital even though she is losing weight and strength fast. They don't feel it is EE related either. She is too ill to travel to Cleveland, and even if she could she does not think they could help. They have long since written her off as having physiciatric problems that she must be causing these problems on her own. Mayo has a long waiting list and once again, she is to ill to travel. Her and her husband have looked into "Angels" but they feel she is too much of a risk with the severe tachy and that she is not stable. She looked into Churg-Strauss but they don't think she fits the strict criteria. She is depressed and upset, who would not be. She feels, no, she is certain she is dying and will not make it to wait for an appointment for Mayo(which after prodding by her husband, her GI dr. is looking into ), I had to do a lot to keep from crying. Linda is reaching out to anyone who can offer her any ideas on what she is going through, anyone she can turn to for help, any ideas on doctors,,anything at all. From all she said, I don't know how thorough if at all they were in all her tests. Linda feels that way. They can't help her, yet see she is suffering. Each dr. pushes her off to another. If it is not black or white, they can't seem to help what is not a textbook case. No grey in-between. It does sound so very much like an autoimmune problem, yet dr's say no. I think it is a matter of finding the right, caring doctor, there must be one out there to help her. I wish I could have jumped in through the phone to be there and hug her. I felt and feel so helpless. I don't want to see anyone here going through the problems they are going through. Linda does want you all to know even though she is too ill to get on the computer, she has thought of everyone, misses everyone and wants you all to know she appreciates your friendships and all the support you have given to her. Once again if anyone can offer any insight, know of anyone who experiences similar symptoms, know of a Dr. who they think can help, please let me know. Keep her and her family in your thoughts and/or prayers too.

Sorry to heart that. Missed your input on here though. Nice to hear from you

Thanks Lauren. Yup, I've been to the dr's enough that my chart is on a 3rd edition! Today is going to be one of those days, warm and humid I'll have to try elevated my feet more when it happens.

Even when I have little episodes,,or "george" as Julia coined it, my rate at rest is in the 90's sometimes 100 and standing 114,,I can't seem to tolerate the heavy chest and the sensation that I can't breathe properly. It drives me nuts. I'm not breathing rapidly either, even with my heart beating faster. Just feels like I can't get enough air in and this last until it breaks which could take an hour or more. I just came back from the cardio on Thurs. I'm tired of running there. *sigh* Anyone else experience this? Even at not so high rates of tachy? Even in the 90's or even in the 114 range,,it feels just as miserable, all the symptoms..is that so strange? Knock on wood it seems that things have lowered from the 130's and 120's down to the 100-115 range during episodes,, but the symptoms still are just as terrible feeling..Make sense? I wonder if the chest muscles tense up, I guess everything can get affected by adrenaline.

The lab would be the best to call. They know exactly when they need to have the samples.. Ask also if any need to be refrigerated. The 24hr I did it had to be refrigerated.

Possibly allergy related? That could give you headaches as well as heavy chest/tightening.. I know it does for me. Hope you feel better soon.

I was going to say Dr. Julian Stewart as did Sunfish. There is a website also. Here is a little snipet that I found also. http://www.nymc.edu/pubs/Chironian/Spring2003/blood_circ.asp . Talks about him with adolescents and pots.

I've had them for years and years. Have been told also that it is benign. Still can be frightening and increase the anxiety though, but benign.