all4family

I am almost certain it is my c-6 that has the pinched nerve in it. I will have to look it up in my medical records. That is interesting. I also remember the day after I had the whiplash injury I took a long car ride with my husband, and I kept comenting on how weird I felt. Nothing felt right, and my vision was dark too. I will have to look up myofacial work. Thanks for telling me about that. Good luck today, and I hope you get some relief. feel better, Suzy

Hi, Sorry your having such a tought time. I have the problem with waking, and wanting to eat, but then not really being able to, and when I do I vomitt. I did solve this problem most of the time, and am now being told I need to lose weight. I have to eat laying flat on my stomach. Then I need to stay down for at least an hour, or sometimes more, while the food digests. Now I still get the problem when I am realy bad weather I am laying or not, but that is better then all the time. I hope you get feeling better, and are able to start eating. Suzy

Hi Janie, I'm glad you found the article useful. I think that is interesting, because one of the few things that they found wrong with me was I have a pinched nerve in my neck. I mentioned the side to side whiplash, and asked if this could cause the pain in my chest, and everyone I asked said no. But it really makes some sense to me. I mean all our brain signals go through our neck, so if there is a problem there, even if it is not a visible one it can cause all sorts of trouble. I really hope the chiropractic appointment helps you. I went to one, but it got too expensive, and the last one I had gave me a really bad migrain also. I will pray that it will help you, and really pray that it won't make things worse. This is case studies on people with whiplash, that have gone to a specific doctor. It is an advertisement for the doctor I am sure, but the stories are worth the read I think. http://www.erinelster.com/CaseStudies.aspx?ConditionID=26 I really hope you get to feeling better. It is so miserable not to be able to get away from pain. Please let me know if the chiropracter helps. I might try going back too! Suzy

Sometimes not only can it be brushed aside, but some people (not all) can be very mean, and use it against you if you dare to complain about them. And they have your diagnoses to back them up. And some (not all) can think it gives them a right to be mean, or abuse you, because no one will believe you. Suzy

May I say THANK YOU MAE!!!! I just watched a very sad movie called "Lorenzo's Oil" has any one else seen it? It is a true story about a boy who got ALD, and his brave parents who went against the system to find a cure for a rare disease. If you can watch it it is really good, but have a box of tissues. I watched it on my computer on netflix. With diseases like ours that no one is really rushing to find a "cure" to the best thing people can do sometimes is to share their stories, and that gives us all a common ground. Then maybe someday someone will say hey...this just might work. As far as toxins go, sounds just about right to me. Suzy

Hi Cordelia, I am so sorry for what you are going through. It is hard enough to feel so sick physically, but when you go to a doctor you kind of hope they will "know" what to do. I think that is why so many of us end up feeling so frusterated with the medical field. Even if they mean well. Just answers can give us such a great deal of comfort when these things happen. I hope you will find those answers that would be so helpful when you go to the Clevland Clinic. Is your appointment soon? Please take care, and I hope you are feeing much better today. Suzy

Hi RaleighPOTS, thanks so much for sharing that. It is so helpful to hear what other people experience on here, and what they find out. I am actually interested to know about the vocal cord dysfunction. I lose my voice quite frequently, although I haven't in a couple of months. When I had a DR. listening to different pitches of my voice I could not do some of them. And when I talk I always feel like I have to yell just to have a little voice. I get short of breath almost every time I talk. As a matter of fact if I didn't talk I probably would hardly ever faint. Thank you for sharing, and I am glad you found some answers. Hi Jana, thank you for being there. The support means so much to me. How are you doing? Take care. Hi Janie, I am so sorry to hearyou have been experiencing this yourself. It seems you and I have our fair share of these issues with breathing and talking. I have been experiencing the heavy chest, especially at night, and wake several times at night. It is an awful chest pain. It feels like a tooth ache all the way from my waist up. I get it during the day also, but Like you at night it is worse. I get panicky feelings with it too. (although I imagine it is hard not to feel panicky when you feel like your chest is smothering.) I know when my husband is home more then usual I have a lot more stress. Just because it takes you out of your normal routine. I love that your dogs respond to the sign language that you created. Dogs are so much more in tune to us I think. I do feel more short of breath when I am up, but when I am sleeping I have the bad chest pain. I did learn something interesting though last night. I have had a side to side whiplash type injury just before I became sick, and I have a lot of trouble with my neck. Yesterday afternooon I cracked my neck, and afterwords the breathing eased up, and last night I didn't have any chest pain! So I looked up some information on chest pain with neck pain, and side to side whiplash, and I found this most interesting article. http://www.jrheum.com/subscribers/05/12/2288.html I know you have had a car accident if I am not mistaken? Did you get whiplash from it? If you get a chance to read it let me know what you think. I do hope you get feeling better from this real soon also. I know that for me sometimes, even though I am on my laptop I cannot hold my head up long enough to type. Take care, and feel better. Suzy

YES! I've never heard anyone else explain what happens to me so well. And when I vomitt it is not like it is coming from my stomach, but I have never heard anyone else describe it so well.....isn't it miserable! I am sooo very sorry you experience these. I was told that you can have vomitting from migrains, and I kind of wonder if that is what this is. I wish I knew what to tell you about getting rid of them. Mine did improve by getting off meds, but that's just me. I am getting them now, and just had one in the shower, had to get out before I was done. If I lay down and close my eyes in a quiet room it helps. Does your vision also seem cloudy, and darker when this happens? And like you are looking through vaseline? I hope this symptom improves for you real soon. Take care. Suzy

Just out of curiosity have you heard about the nestle cookie dough recall? Have you had any recently? If you have I would let your doctor know. Hope you are already feeling better. Suzy

So sorry to see that you are still having such a rough time. I don't know what to tell you except maybe just a stress test, not a cath or anything might give you some answers to the problems you have been having. But I am the worse for taking advice about going to a doctor. (I used to camp at their front door!) I know how a stress test can make you feel. The last one I had I was vomitting afterwords, and then fainted about 6 hours later. It just really did me in. But it did pass, then I had the answers, which were everything here is ok. If you are having pressure in your carotid area the ultra sound would be a good idea I think. Buttttt....that being said I also understand how you don't want to keep going through the same testing and stress over and over. If it makes you feel any better I have been having the worse time with chest pain, shortness of breath, and neck and chest pressure. I hope I've helped you some. PM me if you want, I'm just sitting here. Take care.... hugs Suzy

Hi Steph06, Thanks for that info! Sorry about your uncle.I will keep him in my prayers tonight. Suzy

Hi Jana, Thank you for asking. I plan on calling this next week as I am getting worse, and worse. Guess I was still in denile, but with my breathing so bad I just can't ignore it. As soon as I know something I will e-mail you. Suzy

love it! Thank you for sharing. Suzy

Hi bjt22, I will have to look that one up. I don't think I have ever heard it. Hi Stepho6, is that from the movie? My kids, (and I) want to see the movie, but just haven't been able to. I will listen for it. Hi Erika, We are never too old for good music! Even if we make our kids laugh! Suzy

Hi Vemee, No problem. I hope it helps you. Suzy

Hi Babette, Thank you for sharing that. I have tried different breathing "exercises", that I was given when I first started having breathing trouble. I found they made me think of how I was breathing too much because I was always thinking of it. But I really didn't have very good help with that, I was just given a piece of paper, and told to just relax. But I did find this most interesting site, that I am really interested in. It gives you a free onine breathing test, and they say you can improve your breathing. I am really kind of interested in it, because like you said I really don't want to take medication, and they tried me on an inhailer, and it didn't improve anything for the pulmonary function test. http://www.breathing.com/articles/shortness-of-breath.htm It doesn't sound crazy at all. It sounds like just what I would like to do. I will give what you said a try today, before I start feeling short of breath. Thank you. I hope things go well with your neurologist on Tuesday, and please do let me know what he says. I love that song. Now I have to go buy another cd! I think I may already have it though. I am so sorry that you are having a hard time today also. I am starting to wonder if weather plays a role in some of all this stuff we experience. I noticed that there were a lot of people who were having "good spells" right around the same time as me, then they started hititing bottom around the same time also. Then I posted on the post about migrains, and they were saying that they are caused by vein constriction. Well I had just been on a site that ties barometric pressure with vein constiction, and thought well that would affect anyone with POTS! Just a thought. I really hope you have a better day, If you need somone to talk to please feel free to PM me. Suzy

I was watching Stuwart Little 3 last night, and I was listening to the words ot this song, and although I have heard it a hundred times before it hit me this song is about POTS! I just had to share it with you. It is "Get Up" by superchick I think at least that was what I found when I looked up the lyrics. Now I gotta go buy it! I'm not afraid to fall It means I climbed up high To fall is not to fail You fail when you dont try I'm not afraid to fall I might just learn to fly And I will spread these wings of mine If I get up I might fall back down again so lets get up C'mon If I get up I might fall back down again We get up anyway If I get up I might fall back down again so lets get up C'mon If Iget up I might fall back down again And I might fall back down again And well just jump and see Even if its the 20th time We'll just jump and see if we can fly I'm not afraid to fall And here I told you so Don't want to rock the boat But I just had to know Just a greener side Or can I touch the sky But either way I will try If I get up I might fall abck down again So lets get up C'mon If I get up I might fall back down again We get up anyway If I get up I might fall back down again so lets get up C'mon If I get up I might fall back down again and I might fall abck down again And we'll just jump and see Even if its the 30th time We'll just jump and see if we can fly I'm not afraid to fall I've fallen many times They laughed when I fell down But I dared to climb I'm not afraid to fall I know i'll fall again But I can win this in the end If I get up I might fall back down again So lets get up C'mon If I get up I might fall back down again We get up anyway If I get up I might fall back down again So lets get up C'mon If I get up I might fall back down again and we'll just jump and see Even if its the 40th time We'll just jump and see if we can fly If I get up I might fall back down again so lets get up C'mon If I get up I might fall abck down again We get up anyway If I get up I might fall back down again So lets get up C'mon If I get up I might fall down again And I might fall back down again

Wow, this sounds so fun, and what a great way to keep your special tallent going. I have always wanted to quilt, but lacked the time to learn how. I would be interested in doing this, but how talented do you need to be? I have no special skills in the area of sewing and such. I am glad you are doing this, and hope it will be a big success. Suzy

My understanding is yes it does. I knew someone (online) that was diagnosed with first orthostatic intolerance, then later she found out she had pulmonary hypertension. I don't want to worry anyone on here though. We are some of the most well medically tested people there are. What gave me reassurance I didn't have it (because I was really worried) was that I had had a Echo, and an echo stress test. My ejection fraction was ok, although 3 of my heart valves have small leaks. This person had a predisposed factor though, because she had taken the phen phen pills, and that increases your risk. But if your friend thinks she has it, I hope you will encourage her to get it checked. Suzy

Hi Vemee, My breathing problems really started after I started a beta blocker, (and other drugs) . My doctor from Mayo said beta's are notorious for this. It used to wake in the middle of the night gasping for air. Have you mentioned that it got worse after the beta to your doctor? Just wondering. I feel like that too with the feeling like I need to take a deep breath, but can't. It feels as if my body has forgotten to breath, even though I haven't! Thank you for sharing that with me. At least if I am not alone, I feel less stressed, which ultimatly helps me breath better. Breathing difficulties cause me tooo much stress! Thank you for sharing. Suzy

Hi Erika, I have heard of it. It is fatal, so if she really thinks she has it, she should get it checked. I thought I did for a while, and people with Pulmonary hypertension get Orthostatic Intolerance secondary to the pulmonary hypertension. I have heard of one woman who had a surgery, that improved her status with it, but the surgery only works a small percent of the time. This is what I have learned about this myself, and of course I am no doctor. I hope your friend gets this checked out. Suzy

Hi Erika, Thank you so much for sharing that with me. It is funny, I can see a symptom on the list, but when I hear from someone else first hand that they experience it too, it makes it much more real. I know it is a vicious cycle for me. I try and do something, and get short of breath, then I wonder well could this really be from something worse? Then I am stressed, and that makes my breathing worse, and so on, and so on. The support means a lot to me. Some doctors just don't understand how important what they say is to us. I am glad you have a POTS doc that listens! That is great. Now if we could only breath better! Take care, and thank you for sharing that! Suzy

Hi Everyone, I am sorry to come here like this, I just don't know what to do. I know everyone says go see a doctor, but I have had 2 Pulmonary function tests, 2 chest ct's, and about a zillion x-rays. I really don't want to get anymore radiation, and all the doctors tell me is you have some air trapping, but it is because you are overweight. I would take this as an answer, but I know that I had the same breathing problem when I was "anorexic". I have told them at the Mayo clinic about the breathing problem, and seen a pulmonologist, (my second one), and that was my second lung function test. I know that shortness of breath is supposed to be a POTS symptom, but does anyone know the reason for this? And how do you know when to fight the doctors and say no there is something wrong here. I really ran out of fight a couple of years back. Do you guys think my breathing troubles are due to POTS?? What do I do?? Can muscle tightness make breathing more difficult? I am tired of feeling like I am suffocating! I know you guys aren't doctors, but I have learned more good information from you guys, then from doctors, who just don't know what is wrong. I fear having lung cancer, but hope that with having the last ct about a year ago, and a special one for sarcoidosis, about 3 months ago, that there is nothing to worry about. If I lay down, and am really relaxed my breathing is usually fine. But I always have a cough. But right now if I am up for even one minute I feel like my lungs will collapse! uuurrggghhh.....I know that others on here have breathing troubles. Does it seem really bad to you? Does it scare you sometimes? Can stress cause this? I do everything I can to keep my stress levels low, but you know life! Thanks everyone for taking the time to read this. I hope you all are having a better day! Suzy

Bella Mia, thank you, thank you for the prayers. I don't know if it was one medication that really pushed me into the deep whole, or the onslaught of medications that were first tried on me when I first became ill. The last one I was on, and the one that was a living nightmare to get off of was xanax. After a year off of that the vomitting slowed for me, and then I started gaining weight. The farther I am away from that drug the better I seem to be. (although it has been 4 years I am hopeful that maybe just a little more time, and I will find that that was the cause of all of this.) It was kind of funny, because when I was on the drug, I was the thinner then I had ever been in my life, and when I was told I had anorexia, I nearly fell off my seat! I tried to tell them that something else was wrong, that I had been overweight most of my life, they said it is not about a weight, it is about a relationship to food ! I am overweight now, but really fear losing weight, because that is what happens to me when I am sick! And in all truth and honesty I would rather be fat, then sick! (Gosh before I got sick you never would hear me say that. I was "jealous" of people who were just naturally thin!) How stupid I was! Janie, you are so supportive of everyone here, I sure wouldn't expect you to remember details of everyone. Being to Mayo was the best thing that ever happened to me. I at least have gotten answers there, way more then I ever expected to get. I just sometimes wish the answer was you can get better from this. Thank you always for your support and caring. I am glad you are on this board. (just not glad you are sick!) Take care.\ Hugs Suzy