all4family Posted February 27, 2009 Report Share Posted February 27, 2009 Hi, I am having a horrible time. I have been having bad spells again. I can't breath at all. Well a little or else I'd be dead. my chest feels like a rock, I am unable to eat. I went outside to try the cool air, and couldn't get off the ground. I can breath a little better if I sit on my knees, and put my head on my hands. My coughing is severe, and I can't catch my breath in between. the extreme pain in my chest is just too much. Is this POTS? I feel bad enough, but this is just too much. I have been having more and more spells like this, and can't seem to stop them. Nothing I do is helping me breath. Any suggestions.Suzy Quote Link to comment Share on other sites More sharing options...
firewatcher Posted February 27, 2009 Report Share Posted February 27, 2009 Suzy, are you flushing with these? Turning red? Are you on an anti-histamine? It could be that MCAD thing.(?) Try to relax, I know it hurts. ))))))))))))))))anti-hug to expand your lungs(((((((((((((((((((( Quote Link to comment Share on other sites More sharing options...
juliegee Posted February 27, 2009 Report Share Posted February 27, 2009 Suzy,You need to go to the ER. That also happens to me beacuse of my MCAD, which your docs suspect you of having. I use a breathing treament called atrovent- albuterol and xopenex don't work for me. Don't panic. That'll make things worse. Your oxygen levels need to be checked. Docs need to listen to your lungs. In the past when I've been as bad as you, I took antihistamines and went to sleep- couldn't do anything else. I know you're opposed to meds, so you need to head off to the ER and let them sort things out. You already know you won't get a DX there, but you can get a breathing treatment or a shot of epinepherine. Be sure to have them check your serum tryptase, methylhistamine and prostaglandin D-2. THAT will help with a DX. I'm sending prayers and hugs your way, Suzy. Let us know how you make out.Julie Quote Link to comment Share on other sites More sharing options...
all4family Posted February 27, 2009 Author Report Share Posted February 27, 2009 thank you firewatcher, I didn't think about that. I do have some benadryl on hand for "just in case", but it drives my blood pressure up. I could try a little. Thanks for the advice, and the anti-hug. you always make me laugh. this time I will have to laugh on the inside. hugsSuzy Quote Link to comment Share on other sites More sharing options...
all4family Posted February 27, 2009 Author Report Share Posted February 27, 2009 Hi Julie,Thankyou. That helps so much. My only problem is my local ER won't treat me. Anything I say I have they will not listen to. They will leave me in the waiting room for hours, and when they do see me will not do anything but an EKG. I have been there enough times to know this. I could call the mayo where I have the positive test, and see what they tell me to do. I couldn't handle that long of a car ride right now though. Thank you for the prayers and hugs. I will call mayo, and see what they say. hugsSuzy Quote Link to comment Share on other sites More sharing options...
firewatcher Posted February 27, 2009 Report Share Posted February 27, 2009 thank you firewatcher, I didn't think about that. I do have some benadryl on hand for "just in case", but it drives my blood pressure up. I could try a little. Thanks for the advice, and the anti-hug. you always make me laugh. this time I will have to laugh on the inside. hugsSuzyI'm gonna second Julie's suggestion that you pack yourself up and go to the ER. Get your "U" collection going and have this checked out! Keep breathing...IN...OUT...IN...OUT!!!))))))))))pull(((((((((((((push)))))))))))))pull(((((((((((((((push)))))))))))).....wait that's CPR. Quote Link to comment Share on other sites More sharing options...
Maxine Posted February 27, 2009 Report Share Posted February 27, 2009 Maybe you have a virus. My husband has had chest pain, saying it felt like an elephant on his chest. He's been checked out for heart disease, so he went to doc because he had a cough also. Usually colds start in our head, then moves to chest. But not this time for him, and his PCP diagnosed him with tracheal bronchitis. He made him take three days off work.I know this can come from POTS, but you might want to call your Doc tomorrow to see what's up with that. I have a bad cold also, but it's in my head and wiping me out.I hope you feel better--------very soon---------- Maxine :0) Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted February 27, 2009 Report Share Posted February 27, 2009 chest pain and problems breathing are NOT to be ignored--and if it's not stopped by the time you read this, get to the hospital. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted February 27, 2009 Report Share Posted February 27, 2009 Get thee to an allergist! TOMORROW! Take the MCAD/hyper-POTS article with you and ask TELL them you need to be checked. Get your personal urine collection device (orange jug) and the next time this happens, start collecting...4 hours later drop it off with the lab slip. You've got to get this figured out. POTS won't kill you but anaphylaxis sure could! sorry, just wanted to be clear Quote Link to comment Share on other sites More sharing options...
juliegee Posted February 27, 2009 Report Share Posted February 27, 2009 Oh Suzy,I HATE that you've been treated so awfully there. Here is my MASTO specialist's recommendation for an MCAD emergency. Feel free to share it with anyone who will help:1. Epinepherine 0.3cc of 1/1000 and repeat x 3 at 5 minute intervals if BP<90 systolic.2. Benadryl 25-50mg orally or intramuscularly, or intravenously every 2-4 hours.OR Atarax 25mg orally every 2-4 hours3. Solumedrol 80-120mg intramuscularly or intravenouslyOR Prednisone 50mg orally4. Oxygen by mask or nasal canula 100%5. Albuterol nubulazation(Atrovent works better for me!)Let us know what Mayo advises. Hugs and prayers still headed your way-Julie Quote Link to comment Share on other sites More sharing options...
firewatcher Posted February 27, 2009 Report Share Posted February 27, 2009 Oh Suzy,I HATE that you've been treated so awfully there. Here is my MASTO specialist's recommendation for an MCAD emergency. Feel free to share it with anyone who will help:1. Epinepherine 0.3cc of 1/1000 and repeat x 3 at 5 minute intervals if BP<90 systolic.2. Benadryl 25-50mg orally or intramuscularly, or intravenously every 2-4 hours.OR Atarax 25mg orally every 2-4 hours3. Solumedrol 80-120mg intramuscularly or intravenouslyOR Prednisone 50mg orally4. Oxygen by mask or nasal canula 100%5. Albuterol nubulazation(Atrovent works better for me!)Let us know what Mayo advises. Hugs and prayers still headed your way-JulieIf you have children's LIQUID benadryl take it, it works faster than the pills! Quote Link to comment Share on other sites More sharing options...
all4family Posted February 27, 2009 Author Report Share Posted February 27, 2009 ok. I just hung up with the Mayo Clinic. She doesn't know what pots is, or MCAD. I am starting to feel better, but am still having a bit of trouble breathing. I do notice that when I haven't ate at all (been having trouble with that lately) I get this very severe. I have taken a couple of bites of food, and it seems to be helping?! I do have the dye free allergy free liquid, and will probably take that. I really would go to ER if I thought they would do something other than make me cry, and try to make me look crazy. I am close to our hospital, so if I get worse we can go right in. I can't thank you all enough for caring so much. My husband is on standby, and can have me there faster than an ambulance can come. So could my coughing that I have had for the last 10 months or so be due to the MCAD? I keep thinking I have lung cancer that hasn't been seen on my hundred x-rays!!! When It gets bad like this it just can scare the pants off of me. I will take some of the benadryll, and I promise if that doesn't help I will go to the ER. Thank you all so very much. I don't know where I would be if I hadn't found this site. Oh...by the way doe anyone know if arsenic would cause this? Our water levels of arsenic are too high. Thanks.Suzy Quote Link to comment Share on other sites More sharing options...
firewatcher Posted February 27, 2009 Report Share Posted February 27, 2009 ok. I just hung up with the Mayo Clinic. She doesn't know what pots is, or MCAD. I am starting to feel better, but am still having a bit of trouble breathing. I do notice that when I haven't ate at all (been having trouble with that lately) I get this very severe. I have taken a couple of bites of food, and it seems to be helping?! I do have the dye free allergy free liquid, and will probably take that. I really would go to ER if I thought they would do something other than make me cry, and try to make me look crazy. I am close to our hospital, so if I get worse we can go right in. I can't thank you all enough for caring so much. My husband is on standby, and can have me there faster than an ambulance can come. So could my coughing that I have had for the last 10 months or so be due to the MCAD? I keep thinking I have lung cancer that hasn't been seen on my hundred x-rays!!! When It gets bad like this it just can scare the pants off of me. I will take some of the benadryll, and I promise if that doesn't help I will go to the ER. Thank you all so very much. I don't know where I would be if I hadn't found this site. Oh...by the way doe anyone know if arsenic would cause this? Our water levels of arsenic are too high. Thanks.SuzyThe coughing could be MCAD, if you search the forum there is a whole thread devoted to MCAD articles. That should provide plenty of fodder for thought and breathing exercises! There is one about how histamine "leaks" from the esophagus and into the surrounding tissue and causes non-specific chest pain. KEEP US POSTED! Take care of yourself, please...No clue about the arsenic, that is what Wikipedia is for! Quote Link to comment Share on other sites More sharing options...
all4family Posted February 27, 2009 Author Report Share Posted February 27, 2009 Hi, just wanted to tell everyone I am breathing easier now. I read your post Jennifer about the MCAD, and went on a mad hunt to find it. While I was doing that I got almost an entire dinner in, and I feel better. Which was interesting becase I have noticed that I get this a lot when I can't eat. And as I was reading, I read the about the "can't get too anything. Too happy, sad, and one was hungry." I feel like I've been ran over by a truck now, and am wiped out, but at least I'm breathing. I can't say thanks enough to everyone. When I didn't know what to do I came here. And am so glad that I did. I am going to try and hurry, and get the MCAD thing figured out. I am waiting for paperwork now, but am considering going to Phoenix just to get it and get this thing figured out. I don't want to keep going through this. Thank you Julie for the list of doctors. I will be calling one of them. Thank you, thank you, thank you, everyone. HugsSuzy Quote Link to comment Share on other sites More sharing options...
juliegee Posted February 27, 2009 Report Share Posted February 27, 2009 Suzy,Crazy day at work. This is my first chance to check in. So glad you are better. What happened last night was classic MCAD, at leat for me. That's ONE of the many forms my attacks take. AND, hypoglcemia (too hungry) can definately set it off. That is also a really good reason to get a DX. I was put on many of my meds, nebulizer, and epi-pen BEFORE the official DX. You need to start working with a really good allergist.BTW, unless your Mayo records show elevated serum tryptase levels (or other BLOOD) abnormalities, I would rule out the hematologists on the list. You really need someone who regularly DXes MCAD. Once your records rule out true mastocytosis; you can confidentally begin finding a good masto doc. For the record, I have a great local allergist and my masto doc in Boston. You may have to do a similiar set-up. More later. Feel better!Hugs-Julie Quote Link to comment Share on other sites More sharing options...
all4family Posted February 28, 2009 Author Report Share Posted February 28, 2009 Hi Julie,That sure would explain a lot of what I have been going through for the last 5 years. I get that tightness of chest, and the only thing I can do is ride it out. And any time I have trouble with eating I get these worse. I finally had to quit going to the ER for it. They would never do anything, and usually made me feel worse. There was one time that I was pre-treated before an MRI with dye to make sure I didn't have an allergic reaction because I had already gotten hives due to the dye you drink. (no one is allergic to this!) but they pretreated me anyways, and I felt better instantly. So much so I thought maybe they had snuck in a shot of anti-anxiety drug. I figured that was how it was supposed to feel after you take an anti-anxiety drug although I never did. But on the down side a few hours later I had such muscle tightness I couldn't move. I assumed it was from the steroid, or the dye. Sorry you had a crazy day at work. Thank you for jumping in last night. I can always think back later and say maybe this is whats wrong, but it's hard to think when you feel like that. I wish I could go to Boston! But I will find something. I got my release form, and will fax it back to them on Monday. Then I'm on my way. I do have one question for you if you don't mind, is this something you have for life, or can you "grow out of it?" Thanks so much. And I hope you have a extra relaxing night after a crazy day at work.Hugs Suzy Quote Link to comment Share on other sites More sharing options...
mjan Posted February 28, 2009 Report Share Posted February 28, 2009 WOW!! So sorry I missed this post. Had my own stuff going on.. HUGS!!I know why you dont want to go to the ER. And I wonder if you can ask to get the meds and machine to do a treatment at home when you get this way. Thats if you have junk/fluids in your lungs. Now you know you have SUPPORT here.. and folks with similiar experiences to help..see? AND.. time to use your faith.. trust in God that you will be lead to the BEST doc/clinic possible!!I have your backJan Quote Link to comment Share on other sites More sharing options...
mjan Posted February 28, 2009 Report Share Posted February 28, 2009 Again.. the TIGHTNESS comes on quickly Yes?? Then the panic sets in..right?With my costocondritis..in inflammatin in the ribs.. or whatever I have.. my spasms will sneak up on me..causing this tightness so badly that I can no longer move.. breathe..nothing!! I have learned to work with is. I get up slower..I hold still.. I do not panic (anymore).. and it WILL release. NOW.. it can come back with a vengeance in a split second.. which I why I remain calm..(yeah right) and move ever so s l o w l y...PANIC is normal reaction..but try and stay ahead of that panic.. I also have trouble with my esophogus..acid reflux which causes me to choke..or forget to swallow properly. They did a swallow test and could SEE this..More fun.. NOT!!Jan Quote Link to comment Share on other sites More sharing options...
all4family Posted March 4, 2009 Author Report Share Posted March 4, 2009 Hi Jan,Thanks for the support. Unfortunatly when the breathing trouble comes on the only thing I can do is to lay on my stomach with my arms under my chest, and breath the best I can. There is no enrgy left for panic. I usually will fall asleep many times during an episoed, and wake trying to get a breath. Fortunatly it always has passed. My hands and feet go numb especially when I go to sleep with this. But I have been to many doctors, and have tried many times to tell them what happens. They don't believe me , and think it is in my head, so there is no sense fighting them about it. I have a dialated esoapogus. sure that doesn't help matters. Sorry to hear you've been having problems. I hope they are getting better for you. Suzy Quote Link to comment Share on other sites More sharing options...
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