bebe127

Joann, Funny you should mention your last response, "why can't one dr. do this all?" I was just talking with my sister earlier and asking the very same thing. This, I find, is one of the most frustrating issues. You tell your GP you have chest pain, they send you to a cardio. You tell them you have GI issues and they send you to a gastro. You tell them you have all these other symptoms and they suggest a psychologist aka padded cell . Maybe a padded cell is what I need!! I am considering going to a dr. down here that is a homeopath as well as an MD (and of course she doesn't take insurance, but I've had many friends that have gone to her for other reasons with good results), but my hubs wants me to see a new EP (supposedly has experience with Dysautonomia) and get my heart checked out first before moving forward. Well see what happens... Thanks again!! Be well

Thanks Joann!! I appreciate your kind words, and you're right, I do need to focus on the positive Actually, we have a Cleveland Clinic in the next county up (only an hour or so away), but from what I've heard around my area, they haven't been much help. Still might be an option though that I can talk to my dr. about. I'm kinda like you in that I'm too nice and don't want to step on any toes. I really need to learn some assertiveness!! When I'm at the dr., and they are looking at me like...this lady is crazy, she can't possibly be experiencing all she is saying cuz she looks so darn good LOL!! I just kinda zone out and all I hear is...everyone is going through something, you'll just have to live with it. You can throw my words back at me anytime, as long as they are the positive ones!! {{Hugs}} to you, thanks for all your support Joann!! Be blessed, Bebe

Thanks looneymom! First I must commend you on the support and care that you give to your son! Of course, being a mother myself, there is nothing I wouldn't do for my children. It's hard enough having to deal with this cranky illness as an adult, but to go through it as a child must be a tremendous challenge. You and your son seem to have risen to the occasion. May you both be well I am seriously considering the NutriBullet, not only for me, but for my children as well. Since I don't eat well, unfortunately, my children (teenagers) are left quite on their own and aren't getting what they need as well. I'm excited!! BTW, my hubs is a "gold member" at GNC. He's a buff dude that works out religiously (I wish I had his motivation!). I'll have him check into the protien shakes stuff. It's just so hard sometimes when I don't feel like eating, much less making anything. I wish I could just hire a nutritionist and chef and let them take care of it for me!! Thanks so much for the info Be blessed, Bebe

I've had Mirena for about seven years (changed it out at 5) and haven't had a period except for a bit of spotting now and then. I concur with Corina, it is a blessing for me as well. I feel it is a blessing because neither my husband nor I have to deal with any of it. No feminine products, no mess, no fuss, etc. I am 43 and not in early menopause (far from it from what the dr. says) and I still have symptoms. Don't know about running in families as my mother and maternal grandmother both had hysto's early on. I keep hoping for menopause, I should think that it can't be any worse than what I am experiencing anyway

Bustersacc11, So sorry you had this reaction, sure hope you feel better soon. What about just a plain saline nasal spray? Bebe P.S. The bracelet sounds like a great idea! Could a link be posted possibly?

I hate bananas, Sorry you are dealing with this. Wish I had some answers, but just wanted to let you know that I'm thinking of you and hoping you get some answers and relief soon. Bebe

Hey all, hope you are all well. I'm feeling a bit confused and discouraged as of late; I know, aren't we all? I apologize in advance for the length of this rant/pity party. A bit of background: I am a 43 yo wife and mother of two teenagers that I homeschool. Was dx. in 2009 with "what is probably POTS" by an EP after my first an only ER/Hospital visit. The dx. dr. never treated me and in fact told me that POTS is rare and not many dr.s treated it and he didn't know of any. Over the last almost four years I've been dealing with a myriad of symptoms and have seen many dr.s to no avail. My current GP has me on Metoprolol and Xanax and in fact, he treats about 5 other patients with POTS. His knowledge in the field doesn't seem all that tremendous and he explains to me that all of us are different and I get that. The meds seem to do as they are intended most of the time, but I still suffer from many other symptoms. I guess I'm just sick and tired of being sick and tired with no end in sight. In the course of seeing dr.s and seeking some sort of relief, no dr. has ever suggested what type of POTS I have, where it came from, when it started, or if I'll ever be rid of it. I suppose I should be quite thankful that I don't have syncope, blood pooling, low blood volume (that I know of) and some other things that so many suffer from. I'm confused and discouraged because I've been doing bunches of research, especially on MCAS and Lupus and it is all really scary to me. I just don't know where to turn. I know many go out of town to dr.s, but I am unable to do that presently. I've recently designed a worksheet of sorts to keep track of my daily goings on ie: Vitals, meds, symptoms, stressors, activities, food/drink in the hopes that if I ever make it to a dr. that they will somehow be able to put 2 and 2 together to come up with a better protocol for treatment. Weird thing that I've found is that my blood pressure and heart rate are all over the place. This morning my bp/hr was 95/77 110, Sun. morning it was 98/78 97,but last Thurs. it was 132/94 86. Does this seem all over the board to any of you as it does to me, or am I just being over anxious and crazy? Plus, it doesn't really matter what my vitals seem to be, I feel like crap no matter what. The common protocol for POTS it seems is to eat more salt and drink more water. Well, on the days my bp seems low, that might be fine, but what about the days when my bp is on the high side?? Am I drinking too much water and possible diluting essentials? I do drink a cup of coffee in the am, gatorade, propel and water throughout the day, and in the evenings, I try to relax with a beer or two. I don't eat all that well as I'm nauseous and have little appetite anyway. Could my decrease in appetite be due to meds or maybe because I drink so much? Do any of you drink boost or ensure or anything to get nutrients that you normally don't get from food? I've really started to look at what I eat and it's astounding the amount of nutrients I must be deficient in although no dr. has ever stated that I'm deficient or even tested me that I know of for that matter. My husband has had to take over the cooking, bless his heart, he cooks meals over the weekend so that all I have to do is take them out and pop them in the oven. The problem is, not that I am not totally grateful for my gracious hubby, but most of the foods that he makes are casserole/one dish meals which happen to be really yummy (when I feel like eating), but not necessarily the healthiest of choices. I'm thinking of getting a NutriBullet so that I might be able to do smoothies with fruits and veg in them because I know I can go a whole week and think...my goodness, I haven't even eaten one friut or veg this whole time! Anyone have experience with the NutriBullet? I just don't know what to do or where to turn. I know I should see a dr. but don't know which one and can't really go out of town to a dr. Even if I go to a dr. I really don't even know what to tell them or what questions to ask without feeling like they are going to look at me like I need a padded cell. I guess that's all I have to say for now... I do hope you all are have good, symptom free days Thanks for listening/reading.

Great list! I'm going to print it out and use it, if you don't mind. Sadly, I can tick off almost all of them Your list is quite comprehensive. The following are some of my symptoms that I didn't notice listed (obviously, your list is not intended to be my list of symptoms )Did I miss diarrhea and other GI issues ie: little to no appetite, attic/basement gas, constipation, symptoms worse after large meal? How about weight gain/loss? I know you mentioned hr 130+, how about tachycardia >30bpm or bradycardia? How about reduced libido? Hypotension or Hypertension? Night sweats? Anxiety is a huge one for me, unless "feelings of panic" and "reduced tolerance to stress" on your list are related. Interesting to see results once more people vote. Thanks for posting! I for one am going to use this as a logging tool of my symptoms that perhaps can shed some light on triggers or otherwise give much needed info to dr.s in the future. Bebe

Awesomesauce!!

Boymommy3, My sniffer is on overdrive too!! Smells never bothered me before, but now they can be really bothersome at times. I remember my mom couldn't tolerate smells either, she'd get a headache (I don't though). When my husband would come over (then my boyfriend) I had to tell him he couldn't wear his cologne in the house because it would set my mother off. Of course, it didn't help that he bathed in his cologne, still does Kelly, I know you mentioned Dr. Afrin in a past post of mine. So glad for you that you got things sorted out and you like him and he's been so helpful to you. Can you tell a difference in how you feel? Are you doing noticably better? Do you still have the myriad symptoms? I would love to go to Charleston and see him, but it doesn't look possible in the near future. I guess I just have to talk to my GP and see if he knows anything and can point me in some sort of direction down here. Hope all is well Bebe

Boymommy3, I was looking on the thread I sent you and found a website that someone suggested about MCAS: http://mastcelldisorders.wallack.us/yabb/YaBB.pl?catselect=general might be of some help. Sorry for the many messages!! Bebe

Boymommy3, Forgot to mention that I've never had serious allergy issues before ie: anaphalaxis (sp?), hives, trouble breathing, swelling up or anything like that. I've never had allergy testing either. I know that I have an allergy to sulfa drugs and to gold (I get rashes if I wear it too long). I do however have nasal allergy symptoms like sinus issues, weepy eyes, sneezing, etc. I'm sure there is much more to MCAS than simple allergies, but wouldn't it be great if I could take OTC allergy meds and be "all better"!! I can only hope an answer can be this simple although I've fairly certain it's not. Feel well!! Bebe

k&ajsmom, Wow, multiple rib fractures!? I suppose that can cause a bit of pain! I sleep on my stomach as well and have a soft bed. My lower left rib near the middle quite often feels bruised to the touch, but the bruised feeling I felt on both my lower ribs has gone now. I'm guessing it was just the pressure of the pool chair, even though I was only laying like that for about 15 minutes. Weird. Boymommy3, I do believe you are the only one I've found that gets itchy with hot tub jets. It is so weird. I started looking into the whole MCAS thing when the Dinet newsletter came out and there was an article about it in there (they've since retracted the newsletter to make changes and it hasn't been ready yet). I read through the symptoms and it looks like I have more symptoms of MCAS than I do for POTS. Of course I think the list is a short one but still, here it is: abdominal pain diarrhea* constipation nausea* non-cardiac chest pain* shortness of breath* (rarely) sinus problems** difficulties with vision* swollen lymph nodes (not that I know of) tachycardia* blood pressure issues* syncope headache* neuropathic pain (not sure what this is exactly) difficulty concentrating* anxiety** sleeplessness* tinnitus** hives easy bruising* muscle, joint, or bone pain* fatigue* environmental sensitivities* flushing* (rarely) I've starred all the symptoms I have. The ones that really stuck out to me were the "easy bruising", "tinnitus", and "sinus problems". I've had these for quite some time, even before being diagnosed with POTS back in 2009. My tinnintus seems to have gotten worse over the last year or so, but it's always been there. I just thought it was interesting and possibly another lead to follow in my journey down chronic illness street It is too confusing, I agree, but I'm going to try do my research and talk to my dr. about it and see where it leads. I don't seem to have many of the POTS symptoms, although I do have the symptoms I starred above along with a positive TTT. I don't have OI, exercise intolerance (I'm just plain lazy), blood pooling, or syncope. I know that everyone is different and presents differently, but I just can't get it out of my mind that when I was first dx., the dr. came in after the TTT and said, "You probably have something called POTS". He then gave me stack of papers he'd printed off at the nurses desk from Dinet.org explaining POTS. He told me that it is rare and that not many dr.s treat it and he didn't know of any. That's pretty much been my life for the past few years. I just deal with it. I do see a GP that has put me on meds. and I do seem better, but mostly I think I've just learned to deal with it, try to ignore my symptoms and get on with my life. I've always felt that there was more to it though and after reading the article on MCAS, I'm back to suspecting that I have something else. Here is a link to a thread I posted about MCAS/D awhile back, it might have some helpful info for you: http://forums.dinet.org/index.php?/topic/22510-for-those-with-mcad/ Here's to hoping we all get some answers and relief soon Feel well!! Bebe

Kelly, You poor thing! I don't have nearly the sensitivity that you have; that must be really hard to deal with. How did you get dx with MCAS and by what type of dr. if you don't mind me asking? Blessings to you, Bebe

Ophelialit, Firstly, sorry I misspelled your name in my earlier response. Secondly, what type of dr. dx you with MCAD? Thanks

Thank you all for your responses! Just one more thing some of us have in common Ophilialit: Sorry about the weather up there!! I absolutely abhor cold weather. I was born and raised in South Florida, good thing the heat doesn't really bother me too much. I'm glad I asked about the itching. I wasn't going to, it was kind of an afterthought. I will look up exercise urticaria and read up on it. Coincidentally, I had just received papers on MCAS from a contractor with my health insurance and it had a picture of urticaria. Interestingly enough though, this picture was of someone's legs with bright red dots all over. I never get that, so I threw out the whole urticaria symptom. I've always itched after doing moderate exercise like running or walking. I don't even have to be sweating too much. It hasn't happened in a long time because I don't run/walk any more, and when it did happen, it was way before I was ever sick or dx with anything. I don't get marks on my skin, other than my scratch marks, and I've never had hives or anything like that. My skin doesn't mottle and I don't get blood pooling either. I have had other skin conditions over the years though, not related to exercise. I will definately look it up. Thanks again. Katybug: Interesting. I don't think I have that though, not when people touch me at least. My hubs will give me a "love squeeze" on the leg sometimes and leave a four-finger bruise. I always try to be careful, but many times I notice bruising on my legs especially and they seem to come out of nowhere. I can never remember when or where I bumped myself. My mother was the same with the easy bruising. You should see my arms after I get blood taken! The bruised feeling is just weird, it's like I put pressure on an area and later it feels all bruised; it's not even hard pressure. Weird. Thanks!! Boymommy3: Thanks for your response. It's kinda nice not being alone in this I used to run with my MIL and she never experienced the itching. I just thought it was due to sweating or something. Hasn't happened in a long time since I don't do a lot of exercise anymore. I have never gotten bumps or spots or anything though. You know what else?? In thinking about the whole itching thing, does your skin ever itch when you are in a hot tub and your skin is up against the jets? We have a hot tub and I can't stand the bubbles, they make my skin itch so bad, I could scratch the skin right off. In fact, when we were having the pool/hot tub built (right before I got sick) the contractor wanted to put more jets in and my husband told him not to because they make my skin itch! Whenever my husband puts the jets on to relieve his back pain or whatever, I have to sit in between them, if not I will begin to itch like crazy. Doesn't happen in the shower though, although our water pressure stinks. It doesn't happen to anyone else in the family either. It's all just so weird. The more I read about MCAS, the more I feel the need to be tested for it. Now I just have to find a dr. in my area that even knows what MCAS is...Great Azmusiclover: Thanks for your response. I hate the whole bruised feeling thing. It's really not that big of a deal in the grand scheme of things for me. It's just weird to wake up having my ribs feel bruised and then having to try to think back to what I did. I can't even remember what I had for breakfast much less what I did a few days ago ! I guess it feels like I've been working out hard and I'm sore. I get this even after doing yoga for a short while; one and two days later I feel like I worked out really hard, but I didn't. It's just all so weird. I do quite often though feel like I'm bruised right at the base of my left rib cage near the middle. I brought it up to the dr. and he said it might be a build up of cartilage or something. Didn't really have an explanation or remedy other than to say that if it got worse he could give me a cortisone shot...um...I think I'll live with it thanks!! I don't get itchy from heat exposure, it just remember it happening while running/walking or being up against the jets in a hot tub. Thanks again! Hope you all have a good day!!

lejones1, I am with Issie. Honestly, you two are the only ones that I've experienced with a Sulfa allergy (for lack of a better term). I am currently on Metoprolol (25mg. 3x)and have been for about two years without any problems that I know of. I tend to have hypertension which leads me to believe that I might be hyperpots, but no dr. has tested or even suggested this as a dx. It seems as though many of us tolerate certain drugs so differently and a different drug in the same family might give different results. It really is a quandry and on a trial and error basis. I also take Xanax (.5mg 3x, but double up when necessary). I really feel that the Xanax helps me the most. I too suspect a mast cell problem with myself that I will hopefully attempt to figure out in the near future. Your 2-3 days after medication sound like my experience without any medication. After an "episode" I would only be able to sleep; it was like my body was in such a need of rest because of all the overworking it was doing to keep my homeostasis in check. I too don't know what type of POTS I have, I only know that the dx dr. said, "you probably have POTS". I don't have swollen lymph nodes nor do I experience syncope, blood pooling or the assortment of other issues that normally follow a dx of POTS. The only determination in my case was a postitive TTT in which my hr went from the 70's into the 150's+ within 3 minutes. I too have been told, "that is not a side effect to this drug" or "I don't know why you're feeling the way you do, that's not normal". I know it is quite frustrating and I'm so sorry you are going through this. The only thing we can do is to keep up the search. Have you seen an Electrophysiologist? Have you had a TTT (Tilt Table Test) done? Maybe an endochrinologist or an immunologist might be in order? I wish I had answers for you I do hope the right doctor is just around the corner for you! Well wishes going out to you!! Bebe

Question for you all (please don't kick me!) This past weekend our family took a little beach vacay because my husband had a business meeting out of town and we always like to go with him ( I don't like being at home without him near, so we always find an excuse to go with him). Here's my question: We were laying by the pool (here's the part where I don't want anyone to virtually kick me ) I turned over onto my stomach for about 15 minutes to sun my backside. Two days later the bottom of my ribs felt as though they were bruised (no visible bruising), but I literally felt like I'd been punched or kicked in the ribs. I felt pain at the touch. It was like I had done a bazillion crunches, only higher up. Still hurts today. Just wondering if anyone else has experienced this. I also used to experience pain in my elbow joints when I used to ride my bicycle (a while ago!). I would always attribute it to the pressure I was putting on my elbows while riding and holding the handlebars, so I would always shake my arms out during the ride, or try to ride with my elbows slightly bent. I since don't ride anymore. Many times when I attempt to do a bit of yoga for about 20 minutes, the next day or two after, I feel as though I've been run over by a truck. Is this normal??? As of late, I haven't even tried to exercise, even though I know how important it is, because I just know I'm going to feel so much worse the day or two after. Shall I just soldier on?? Am I perhaps just out of shape and need to slowly get back into exercising and maybe that will diminish the soreness?? Another weird question for those of you that have the willingness and energy to run or walk on a regular basis. I used to run 5 miles a day (haven't in years but just wondering anyway) and when I would run my thighs would get so itchy. I would be running and scratching and come home looking like I'd been mauled by a wild cat. Wondering if anyone has ever experienced this as well and can shed some light. Thanks in advance Hope you all are well and hoping for symptom-free days for all P.S. I do bruise easily. I always say that I bruise like a banana!

So sorry to hear this Ryan! Hope you get some answers soon. {{Hugs}}

I've been on Mirena for years (of course changing out when necessary), I don't think I've had a period for about 7 years, that part has been wonderful. I was dx with POTS about 4 years ago, so I don't think that this has anything to do with anything regarding my dx. It is quite nice to not have to worry about periods though. I don't feel any different during any particular time of the month, although since my POTS dx. it seems as though I feel as though I have menopause, hangover and flu together almost daily. Don't know if there is any correlation.

Lindsey, I do agree with Kimbellgirl. See if there is a group in your area. Unfortunately, I have not found a group near me and even if I did, I don't drive often or too far from home, so even if there was a group in my area, the driving would still pose a problem for me. The only "friends" I have that truly understand what I'm going through are the people on sites like these, and I'm so grateful to have found them. I also frequent blogs of people with dysautonomia. While reading of their experiences I also look on their blog to find other blogs and it just goes from there. Many have sites that point to other blogs, articles, information and encouragement. Also, there are many groups on social networks like Facebook that can be helpful as well. Sadly, I don't know anyone around me personally with the same issues as me, and yes, it can be quite lonely. My immediate family is as understanding as they can be (hubby and two teens), but there is just something about talking to someone that fully understands because they are going through the same issues as you/me. Please feel free to pm me. Just know that you are not alone in any of this. There are many of us out there that are going through some of the same issues. Feel better soon

Aimes, I was re-reading your post and thinking more on the whole "deaf" thing. You said your head feels full of pressure and it gets worse when you push things. I'm not sure what you mean by this, push as in push a shopping cart or stroller, or push as in doing a push up, or pushing, like while having a BM? I only ask this because if it is the latter two (I know for me anyway) holding our breath tends to occur at the same time whether we realize it or not. As I was thinking about this I pinpointed when my temporary deafness occurs, when I'm pushing/holding my breath. Doesn't happen all the time, but I think it might have something to do with pushing/pressure/bearing down/holding breath. Hmmm....

Aimes, So sorry you are having such a time. Good on you for being a Wish Granter, must be so rewarding. Years ago one of my daughters' best friends had a wish granted from MAW after she suffered an AVM (aneurysm type thing). Thankfully, she survived and is living a normal teenage life today. Your episode sounds a lot like mine at times. I usually have these when I'm stressed, like every Friday morning when I have to take my kids to their homeschool co-op where I teach a class as well. I also feel better after a BM, weird...(sorry too if tmi) but that is usually the last thing I do before leaving the house! Never have checked my bp though, it would be interesting to see if I have similar results. I tend to have bp on the high side already. I've experienced the whole "deaf" thing too! It is so weird!! Mine doesn't happen often, but when it does (I can't even remember what really causes it or what I"m doing at the time) my hearing is just gone, like you in a few seconds it comes whooshing back. I've had this "deaf" thing for quite sometime now, before I was even diagnosed with anything or had any health issues. I've had migraine type headaches for years and sinus issues too. I also have tinnitus that has progressively gotten worse over the last year and have been experiencing some hearing loss as well (just wrote about this this morning on my blog). Haven't mentioned any of this to my dr. as I usually don't go in to see him but twice a year, once for med renewal and once for physical. The physical is coming up shortly and I'm going to discuss it with him. I also suspect MCAS for myself and hopefully will be able to get that checked into in the near future. Sorry I don't have any answers, but unfortunately I know exactly how you feel Feel better soon!