mom4cem

Thanks friends. Survived the first part of the tournament. The girls won all 3 games today. We have 2 tomorrow. I keep eyeing up the box of lexapro and wondering if I dare try it. I know it could be a lifesaver who knows. I know I need to try, just have to get up enough guts to do it. Thank you all for making me feel like I am not alone in feeling these types of symptoms. I sometimes wonder because I don't have the OI part, well not always, but who knows what happens right b/4 the episode starts, could be the b/p drops then significantly rises to compensate and starts the symptoms,, guess I'll never really know and need to accept that.

I know this sounds inconsequential compared to what others are going through and I am leary about posting but I wanted to get some feedback. As you all may or may not know I have mvp, dysautonomia, low b/p and sometimes normal to a little above. I get adrenaline surges sometimes many times during the day but not always enough to cause rapid heart rate etc. I do try to keep track of my b/p during the day as well as hrtrate. The surges have been driving me crazy!!! I am starting to live in fear of them and what they will bring. Last night hubby and I went to a party, I had a few sips of wine and a little beer( I know, should not have done that), was having fun but that was short lived. I started to noticed that my heart was beating a bit fast. I did not have a watch to time it but it was fast and got faster. I kept my cool and kept on going but it was hard. About 1/2 later the chills started, and the teeth chattered. I gulped some water down and took a 1/4 bb and waited it out. It did finally calm down, but I sit here this a.m. feeling sorry for myself and worrying that it's getting worse, what if it happens every day etc. I feel even worse worrying about this when people have much worse things to deal with, like MichiganJan and her family and Ernies recent loss. These daily adrenaline surges are driving me crazy, but the acutal episodes like last night are crossing the fine line I am already on. The drs just push more bb and then I am too tired and ssri's, I am very leary of trying the ssri's. I worry too much about side effects. The feeling in the pit of my stomach, the tightness in the throat, the feeling your head will explode, and sometime the heartrate going up and the b/p either goes up or down.,,yikes,,how do you all deal with it? Will a ssri help adrenaline surges? I don't want to stop living life fearing these daily surges and the acutal episodes. Anyone get these adrenaline surges, live with them sometimes every day and few times a day? My heartrate is usually normal, not abnormally high until I get these episodes and my b/p, well sometimes the upper-systolic is low and the lower-diastolic is either low or normal to upper limits of normal. Can't figure this all out. I really need to find a knowledgable dr.here. Thanks for letting me complain, I do feel better. I have soccer tournaments all weekend with my daughter! Thank goodness its not to hot here today. Whew! Wishing you all a symptom free day!!!

You, your husband and family are in my thoughts today....hugs to you

Carmen, If you don't mind me asking, who your dr. is? Or if you would rather e-mail me. I was wondering if he was with the MVP center. I go there once a year if I can, and have found that so far they are the only group I have found that understands. I've yet to find one local to me that does. Glad you have a doc that's a keeper!

Katherine, The site is great! Really, thanks for spending your time on it!!!!

It's called the Mitral Valve Prolapse and Autonomic Disorders Center of Ala. It's in Birmingham. About 15 yrs ago I was diagnosed with MVP. I had panic/anxiety, racing heart, low b/p, palpitations, heat/exercise intolerance,,a whole slew of symptoms. I went down there because that is what they dealt with, Mitral Valve Prolapse Syndrome, which the syndrome is dysautonomia. They did a tilt table test, and some other tests plus excercise/breathing test where they check your oxygen levels while doing a stress test. I try to go down 1 a year to go over my meds, symptoms etc. and any testing that needs to be redone. I can call them anytime and they get back to me. It's a far trip but so far I have not found anyone local who even believes in dysautonomia,,I should rephrase that, I have been told by dr's that if I do indeed have it I would be very bad off. It's either black or white with them,,no gray, and that is where I fall. I'm just glad I have a dr somewhere who believes me

Same here, it is even worse I am walking, I guess from the force of the blood pooling in the hands then I can see white spots on my hands also at times too.

Wish I could help you here. I am also in NY and have not found anyone yet who is both compassionate and knowledgable with dysautonomia. I go to the Autonomic center in Ala. 1x a year and keep my fingers crossed the other 11mths of the year. If I hear of anyone I will let you know also.

I've had, not sure you would call it bruises, but on my fingers every once in a while the side of a finger will itch and hurt and I will notice that it is purple and burns, like an inflammation. I've been tested for autoimmune disorders before and since then and nothing comes up. I wonder if we can have such sensitive veins, skin etc, that the smallest thing can irritate it. I've banged my feet and legs so hard at times and nothing shows, and sometimes I find a bruise and have no idea on how it got there.

Low iron? Periods can certainly produce more symptoms, they do for me also. Those hormones can cause a variety of symptoms. Sorry I don't have any other ideas though.

Hi and welcome. I'm a mother of three and still trying to find exactly what I have, but have a feeling that will never happen. I have been diagnosed with dysautonomia w/mvp and also have many of the symptoms listed here. Still trying to find out what will work for me and hopefully you can find something that will work for you. This is a great place for support. Welcome!

I also feel at times like I can't breathe, that my chest is heavy/tight. All tests always show o.k., except at times maybe they say, a touch of asthma(allergies). I also notice that exercising can help me, that sometimes, not all of the time thought, that after exercising I breathe better.

For it is usually the sense that something is not right. I'll notice that my heart rate gradually increases until it stays at a rate anywhere from 104-150, I start to get the chills, my teeth will chatter, hands shake and legs are shaky, sometimes it feels like my stomach drops,like on a roller coaster ride, the brain fog sets in, feel fuzzy in the head, sweats, my face and head feel like it will burst, I can't even move my eyes side to side w/out it feeling like my head will explode, I even have the anxious knot in my stomach. This will last from 20 minutes to a few hours with me and it only gradually settles down and for the rest of the day and sometimes the next my heart rate will be up and I'll feel horrible. There are times when I feel like it is coming on and I try to stop it or prevent myself from freaking out about it but usually I get just as scared as the first time it happened. Not fun for any of us

Ouch, very sorry to hear that. I have a couple of toes that I'm sure I broke over the years too. Not much you can do about that but I agree that you don't want to mess around with your hip. If it does not feel better in a few days, or feels a lot worse in the a.m., please consider getting it checked out. Don't won't to be laid up with hip trouble!

Hi, I've taken Z-pack many times over the years.. I'm allergic to penicllin can't take biaxin and a lot of others so I 99% of the time I take azithromyacin. The worst I have had with it is stomach problems, so I have to make sure I eat something before I take it.

I don't think that I could anything more to whatever has been said, all the replies are so full of support and ideas they are great. I am so medication resistant, I know that I feel lousy partly because I am so resitant to try any new meds. I am really hesitant,(that is putting it mildly) about trying lexapro. I tried zoloft once and it was horrible for me, felt like I was climbing the walls, worse than what I felt without it. So I just sit with the unopened sample box and unfilled RX and debate back and forth should I or shouldn't I. I worry about the side effects and then I worry about never being able to get off of it,,,,ever. Don't give up, hang in there. After reading how many here hung in there and it did not give up with the meds, I think that has given me the extra push to try! Sending you tons of support your way

I also find my allergies are making my symptoms more pronounced. I don't know whats causing what! My sinuses are so inflamed at times I can't breathe and that makes my lightheaded or is that the dysautonomia? lol. I go from stuffy to runny, itchy,dry eyes to watery, out of breath when it's really bad. I've used claritin, allegra and zyrtec. All worked about the same, could not tell the difference. All of those were without psuedephrine(sp?) otherwise I get tachy. I use Zicam nasal gel as well as a mix that my allergist gives me. I have been using singulair and it has helped with at least easing the chest symptoms from allergies. I do notice that when I am really bad with allergies my heart rate increases. I just guess that it is from my being so clogged up and can't breathe through the nose that everything else has to work harder. Just like having a cold, my h/r increases also. Distilled warm water mixed with salt and snorting it up your nose one side at a time can reduce any sinus symptoms, it reduces the inflammation.

I am so sorry for your loss. Do what you need to do but remember even if you are unable to physically make it, mentally you will be there and in spirit. I'm sure your family will understand that and your sister would have wanted you to do only what you were able to. My thoughts are with you.

Hi everyone, I took prednisone for 5 days for sinus/allergie problems. During that time I actually felt sort of calm inside. The inner shakiness I usually have was pretty much gone. My heartrate still bounced around but I felt more normal than I had in a long time. Well the night after the last one, whoa I felt like my throat was tight and I could not swallow, felt the usual stomach in knot feeling then stomach drop feeling, got the shakes, teeth started to chatter and pow.. bp went up and hr went up. The past few days since I stopped, I have had the inner shakiness back, I feel the adrenaline levels way back up, like someone opened up the line and it's dripping faster than usual again. Heartrate is running from 80-90's and I am waking up every a.m. with an adrenaline rush. It's making me crazy Can feel every blessed thing that is going on internally, every ache is back etc. Ah well, it was a good few days, makes you really appreciate them when you have them. Dr. said long term prednisone would not be wise for me. I'm wondering if there is something natural like a supplement that would have that type of effect, an anti-inflammatory that increases cortisol(at least I think that is what prendisone does). Well I am going to force myself outside now to do a little something worthwhile in the garden before my own whining and complaining gets to me.. Hope you all are enjoying your weekend! It's a beautiful day here in N.Y.

So sorry to hear your sick on top of an unfulfilling trip. It such a downer to go with expectations of finding help, answers to questions only to leave feeling mentally worse than when you left. Hope you feel better soon.

So sorry you are feelin so bad. It does seem that once we get hit with one infection it knocks us out and leaves us open for another and it seems to happen we do get another. Maybe there is something to help your immune system like Vit.C,(I take more of it when I feel something coming on and it seems to help)even Zinc,(I do that too). Maybe it will just give you the extra boost to help you get back. Feel better!!! BTW, that mucinex can really knock out the mucus monster, works for me!

Hoping you are home resting comfortably now!

Hi Ling, I have to look into this some more but what I have right now is to tell you this. My first and second pregnancies were without any meds, from what I remember. My third though, and that was almost 4 yrs ago I took tenormin, a beta blocker which I was taking a low dose daily since I was very symptomatic with pac/pvcs and tachycardia but I had to increase during my pregnancy and I also took Klonopin which is an anti-anxiety medicine and I took that on an as needed basis. All this was cleared with my ob/gyn who felt that the better physical and state of mind I was in the better it would be for the baby. He was born on time, no problems and healthy. He is now almost 4. I think had I really forced myself not to use anything during those times, the stress would have caused more trouble. I also had a little pre-term labor(not from the meds) and I had to take steriod shots to speed up the little guys lung maturity. And like I said he is fine, normal 3yr old. I'll post the active ingredients when I can spend more time looking it up.

Hi Miriam, What a story. I am sooooo glad that you are here to tell it. It must have been frightening for you and the whole family. I can't imagine. It is amazing how things work out, your husband deciding to go back home. Sends shivers down the spine. Do I understand correctly, ARDS is acute respiratory distress syndrome, now was that from pneumonia that you caught? Were you sick prior to that, like with what you thought may have been a cold? Was wondering about that, since my mother-in-law just 3 weeks ago was complaining of a fever, severe abdominal pain on the right side mostly. She thought for sure it was a gallbladder attack. Even her md said her symptoms fit the bill for gallbladder and wanter her to go the er and he would contact some gi dr's that he knew. Well she did not want to go until later in the p.m., she was worried about wainting around in the e.r. By the time she went that late evening the dr.s were waiting and were ready to do a gallbladder removal. They did some tests first and could not find any evidence of gall problems, blood work, ultrasounds, ct scans could not find any problems with it. She told them she had an attack like this a few months prior and it had gone away. It wound up that she had bacterial pnuemonia. They saw it on an x-ray, she was not coughing or anything that would have tipped her or her dr's of pneumonia. Over the course of days in the hospital she did start feeling fatigued and coughing but she could not believe that she had it and did not know. She is out of the hospital but still home and has to be for 4 weeks. My point of the story is, is how suddenly things can just happen and you can have no clue about it(at least she had none). Happy Anniversary and many, many more healthy years to come to you!!! Hope those grandchildren bring a great big smile to your face

Congrats! Glad it went well! Kudos to you, just thinking about giving a speech makes my heart race more than it does normally..lol