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nmorgen

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Everything posted by nmorgen

  1. Hi, Sorry to hear about your chest pain. I also have chest pain, but I was told that mine is Costochondritis. I had my stress test about 6 months ago, and I used the bike instead of treadmill. You may want to ask if they have a bike you could use instead, or as others have said you can do the drug stress test. I have to say it took me a few weeks to fully recover and feel better after the stress test, but its worth knowing that your heart is in shape. Good luck and I hope you get to the bottom of your chest pain.
  2. Thanks for the info firewatcher, I do throw PVCs a lot and that is sually the times I feel most breathless, so maybe it is throwing the measurements off. I'm still going to try and get my pulmonologist to prescribe the montior just to check. I'm also starting to get sick, so maybe that contributed to the low oxygen levels. I may have to wait for the monitor if I'm still sick on Monday. Thanks for your reply Issie, I think your husband is correct about getting the co2 out. When I start feeling that tight chest, I do the long exhale a few times. I do think it helps a little. I'm curious, did your dr recommend you use the oxygen during activities that cause you to desaturate? I also have albuterol as my rescue inhaler, but I only use it if Im having an asthma attack. I was always told that I should use it as little as possible, b/c it increases my risk of dying from asthma. My pulmonary dr from the US told me that if I'm having to use it more than once a week, then my steroids aren't controlling the asthma. Do you use it reguarly? Maybe since you don't have asthma you aren't under the same risks?
  3. Hi Lieze, Your doctor is absolutely correct about the possibility that celiac disease / gluten intolerance is behind your problems. And I'm excited to see that more doctors are finally looking at this. If they'd only looked at this 21 years ago, I wouldn't have wasted all these years being too sick to function ... My daughter is 23 now and I missed all of her childhood because of this ... Many celiacs don't test positive the first time around so testing negative shouldn't discourage you from getting the gluten out of your diet. I REALLY don't think that I would have tested positive for celiac disease backn in 1990 when all of this started because I could still eat gluten without getting the runs from it. TMI ... lol .. I think I just had gluten intolerance and it was affecting my brain, etc ... go to www.glutenfreeandbeyond.org so you can see what gluten intolerance can do to you ... It's only been in the last year that more and more doctors have learned about this. FINALLY !! There have been studies on the web for at least 8 years ... Also, some people seem to think that celiac disease is EASY to treat.... WRONG WRONG WRONG WRONG !!! Sure some celiacs simply have to get the gluten out of their diets to feel better but I can tell you from experience that many of these people, including me, still aren't healthy most of the time. Gluten affects the brain, etc ... I'm not sure who keeps spreading that rumor but it's not the patients I know. My doctors thought this way so maybe it's the medical profession ... of course when I went back asking why I didn't heal up majically, I got the standard " I don't know ..." . Not to mention that celiac disease causes nutritional deficiencies which most doctors don't look for ... I found out a year after going GF that I was significantly deficient in B12 and Iron. And 3 years later found out that I was deficient in E and chromium. My integrative doctor is looking at all the complications that celiac / gluten intolerance has caused me ... IMHO, by the time gluten has damaged your gut to the extent that you have flattened villi and thereby get the gold standard diagnosis, it's done irreversible damage to other organs too. Ok, I'm getting off my soapbox ... ... hope you feel better soon ... Oh, I had a GTT with insulin and found out that I OVERPRODUCE insulin ... which leads to chronic hypoglycemia. So be sure to have this test. Otherwise, your doc can't see what your insulin levels are ... And ... still trying to get off my soapbox ... ... I've found that eating the Paleo / low carb diet helps me control my blood glucose levels ... It took me about a year though ... tc ... Marcia I am so glad that drs are catching on. I'm also glad that the amount of gf food has expanded from just rice bread(GROSS!). Rice bread was just about the only thing available when I was diagnosed. You have so much selection now, and you can get it from WalMart or Amazon. It's made it so much more affordable in the last year. I agree with you on all points. It took me over a year to heal from this, but my poor mother has been gluten free for over 3 years and she is still a mess. I do have to say that if I'm exposed to a small amount it takes at least a month to get over it. With the British research showing that they believe its linked to neurological disorders it's scary. I have neuropathy and though nobody knows for sure I think it's probably from celiac. Thats why I said I wouldnt wait for a positive celiac test.
  4. Hi Rach, I was wondering if any of this happened before or after your POTs? As I meantioned to Julie, I am sorry you have this, but I'm glad that I'm not alone. I guess it's a good sign that they haven't found lung disease or anything else scary that is causing this. Has the oxygen helped? Can you tell a difference using it compared to before? The thought of being on oxygen at 35 isn't that great, but I'm not ready to go into cardiac arrest either, so if I have to be on oxygen I will. Do you use it all of the time or just during activity? Maybe I'll get some answers next week, or maybe not. Thanks for responding it made me feel better. Natalie
  5. Hi Julie, I'm sorry that you are having problems. I am glad that I'm not alone, as selfish as that sounds. I am hypermobile, but I have never been tested for any CTD. I do have asthma, but I wasnt having an asthma attack any of the times my oxygen levels decreased. I did feel the weird heavy feeling in my chest that I normally feel with my POTs along with heart racing and PVCs. I'm really hoping it's something related to POTs and not a lung problem. BTW I looked on some of the asthma boards and most people's oxygen levels don't decrease like this with attacks. 2 years ago I was put on a beta blocker that caused such a horrible asthma attack that the spirometer put my lung function at 70% and my oxygen levels were still good. I personally think the pulmonary drs are some of the nicest drs I've seen. Good luck and maybe we can find out what is going on with both of us. I'll keep you updated, Natalie
  6. Hi Godsgal, I was wondeing what meds youa e cuently taking and what type of POTs you were diagnosed with? My blood pressure can jump up pretty high. Yours doesn't seem that high compared to some of my bp spikes. I also get flushing and hives, which I believe is probably mast cell activation. All of your other symptoms seem pretty aligned with POTs except the tumor. You should really have that checked out. Try to relax and not stress out too much. It just makes everything worse. Good luck and I hope you get better soon.
  7. Hi Maxine, Sorry to hear that you ae dealing with so much. I'll definitely put you on my paye list and hope that you can get some help.
  8. Hi Dunky, I have hyperadrenergic POTs, which it sounds like you have the dysautonomic POTs, but I did want to comment on the low pulse. Last year I started asking about a low pulse that didn't want to go up and made feel terrible. At the time nobody else had experienced this on the forum. I lowered my clonidine and that brought my pulse up a little(mine was as low as yours hanging in the 50-80s). I also started walking a little bit, but made sure I had someone around. My body eventually adjusted to the lower pulse. Not overnight, it took a few months, but the lightheadedness did get better. My pulse still stays really low except when I exercise heavily or I am really having a POTs flare. Maybe you can talk to your dr about lowering your dose of midodrine. Good luck and I hope you feel better soon.
  9. Just wondering if you have asked about steroids injected into your ears? It's also used to regulate fluid. My grandmother had this done last week. I also have visual disturbances. I have utricle damage which I thought was the cause of my eye problems, but I am now thinking that I might have Vertical Heterophoria. I'll probably have to wait until I move back to the US to find out, but it definitely fits a lot of my symptoms. Good luck on whatever you decide.
  10. Praying that you hear good news today for both you and your husbands dr appointments.
  11. Kind of off topic, but why are SNRIs like wellbutrin and cymbalta prescribed for hyper POTS if they inrease the amount of norepinephrine? Have any of you hyper POTs tried them and what was your experience?
  12. Thanks firewatcher, I do get cold fingers so maybe that along with not having a 1k oximeter is my problem. I made an appointment with my pulmonary dr for Monday morning. I will keep everyone posted. I hope your test turns out okay. If you don't mind I would be interested in what happens with your readings from your overnight oximetry test. Thanks, Natalie
  13. Glad you got your diagnosis. I hope with treatment you start feeling better soon.
  14. Hi Maxine, I'm not sure which type of POTs you were diagnosed with, but my anxiety was very similar. I would practically jump out of my skin at loud noises. I can count on both hands how many times I would wake up at around 3 or 4 in the morning with my heart racing and my blood pressure through the roof. Going to the ER b/c I was afraid I was dying and them having no clue as to what was going on, but being told I was having an inappropiate adrenaline response. Oh, I did have one ER dr tell me I just had anxiety. Scary feeling when the anxiety hits you and there is nothing you can do about it. Horrible feeling. I also have a lot of compassion for people suffering from this and my sentiments exactly on those with no empathy.
  15. I personally dont think being tested for celiac is worth it. They don't give you any medication for treatment, they just tell you to avoid gluten. I would avoid gluten for a month and then try to eat something with gluten after that month. You should be able to tell if you have a problem with it. I can tell if I've had a trace amount of gluten. It starts with a headache for me and then I start bloating and feel like I have just eaten razor blades or needles. I'm not a medical professional, but as I've said there is nothing you can take for celiac or gluten intolerance. All you can do is avoid gluten. I have to say it can be hard at first. A good idea is to join one or all of the celiac websites and get information and advice. That being said I have been gluten free for 3 years and I still have POTs. I do feel better without wheat and I don't have as many digestive problems, but I do have bowel motility problems. Is all of this related to POTs? I wish someone had the answers. Im not sure what else they want to test you for, but its worth finding out whats wrong. Even if the tests aren't fun. Honestly the worst test I've had was when I had liver problems and they took so much blood to test for hepatitis and who knows what else that I did feel bad. All of the tests I had for POTs weren't bad at all. I went through them and came out thinking I don't have this. All of the horror stories I read here about the tilt test didn't happen for me. At the time everyone on dinet was saying that when they started having problems that they could sit down or lie down and feel better. Most of my symptoms happened when I would lie down, so my thinking was that my neurologist was completely wrong when he told me he thought I had POTs. After being diagnosed I found that my body was releasing huge amounts of norepineprine and epinephrine and my symptoms were just as bad if not worse, because n/e didn't just disapear from my system when I would sit or lie down. I'm glad now that I decided to go ahead with the testing for POTs. I have had some improvement in my symptoms thanks to clonidine. Don't be afraid of getting tested or asking for tests that you think might find the problem. Just know that if they can find the cause to you health problems they might be able to help you. Even if they eliminate a lot of things hopefully it will bring you that much closer to finding out what is really going on. Knowledge is power.
  16. Hi Lieze, I don't know much about eating disorders, so I can't really help there. When I first started on my journey to find out what was going on with me, the medications I was put on caused me major liver problems. I couldnt eat for weeks without getting seriously ill. I started juicing organic fruit and veggies, especially raw beets. At night I would eat a small amount of baked chicken and baked new potatoes. They were the only thing that didn't make me sick. After about a month my liver function went back to normal and I could start eating again. I also found out during that time that I was gluten intolerate, which has helped me a great deal. I do suffer fom a lot of food allergies and I'm also chemical sensitive. Don't be afraid of these type of tests. They will help you in the long run and are well worth it. I had the chemical sensitivity test at Mayo dermatologist. Not every allergist does this type of test, but the food and outdoor allergy tests are fairly standard at most allergists offices. As far as sensitivity to medication, I have similar problems. Everything causes me problems. Including vitamins and supplements. I break up everything I take also, regardless of whether it tells you not to do this. After Topamax nearly left me blind(very scary narrow angle glaucoma), I am very careful about everything. I don't think there is anything wrong with having a healthy fear of drugs. Some of them can cause very serious side effects. I also learned from my Topamax experience to take a drs opinions on drug side effects with a grain of salt. As far as antidepessants, some of them are good at helping with POTs and some are contra indicated, so do your homework and discuss it with your doctor. As Persephone mentioned, this may not be all due to POTs itself, but I know that a lot of us suffering from POTs have some of the same issues. Be strong and try to get to the bottom of your health problems. Dont let a dr just label you with a mental problem if you think there is something physically wrong. Good luck and I hope you feel better.
  17. Wow! What a terrifying experience! I am so sorry that you and others on the forum have had these type of experiences. Thank God you all were able to endure and keep your faith. I'll make sure to keep most information away from any of my doctors. I was lucking in the US to be in the bible belt and all of my drs were Christians and brought up God and prayer themselves. I will be praying that no one else on this forum or suffering from dysautonomia has to face anything like that, and that they are strong if it it ever happens. It's just really sad.
  18. Hi everyone, I just got an oxymeter last week. I started using it this weekend. I wanted to use it when I felt breathless and potsy. I noticed that when I started feeling bad my oxygen levels would start to plummit. They get as low as 61. I thought, well we are suppose to have less oxygen hence passing out and brain fog. When I looked online to find out what was normal I started getting scared as anything below 90 is considered respiratory failure. This happens several times a day and now I am seriously scared. Does anyone else have this happen? I'm wondering if I should make an appointment with my pulmonary dr and see if I can be put on the oximeter monitor. I don't really want to be put on oxygen, but I don't want to go into cardiac arrest either. Im scared and freaking out a little.
  19. Very interesting. I also have problems with my left kidney. I have severe scoliosis and my spine curves to the left side at the bottom. I've often wondered if my spine puts too much pressure on my kidneys, because it can be very painful. Now, I'm wondering if it could also be affecting my blood flow to my kidneys.
  20. Hi, I fell straight back and hit my head friday. I don't remember falling and I was confused when I woke up. I slept most of Friday and had a horrible headache and the back of my head hurt. I feel better today. I have been a little nauseous and my head feels "full", I mean I feel pressure in my head, but I only have a slight headache. I am suppose to fly out on the 27th back to the States. Should I go and have my head checked out jst to make sure everything is okay before I leave? I do feel better today, but I will be traveling with my two kids and my husband will be staying behind. I'm a little neervous anyway making that long hal flight virtualy by myself. now I am getting a little paranoid and I'm wondering if I should have my head checked before I go. What do you think?
  21. The sad thing is I have only come close to passing out. I usually just get dizzy with my POTs. This scared me. My memory is not working with me today. I think I might have a mild concussion.
  22. Ok, first off we are only hearing oneside of the story. You seem to have been offended that he didn't help you organize and clean your parents house and help you and your mom with your business. I'm reading between the lines but your comment about it seems a little resentful. Honestly, you need to talk to him. Let him know that it bothered you that he didn't help. Find out what you did that caused him problems. If you think that a relationship wont bring stress then you are wrong. All relationships need continuous work and they can be stressfull. Maybe you aren't ready for a relationship yet. Good luck.
  23. Wow! I had a really bad day. The mailman came to deliver a package. I was feeling a little shakey when I opened the door, but I didn't have any warnings that I was going to pass out. I was signing for the package and woke up on the floor. I had no idea where I was or what was going on. I dont know if I would have woken up if the mailman hadn't been there talking to me. It was very scary. I know I must have really hit my head because the back of my head was killing me and I had a horrible headache. I also kept hearing a hissing noise in my head. I had to go to sleep and slept for the rest of the day. My head still hurts. I have been doing so well and it just upsets me that this happened. I guess if I start feeling shakey I just need to sit down or lie down. Hoping my head stops hurting.
  24. Hi everyone, For the last 2 weeks I have been developing a respiratory tract infection and cold. This Friday I started taking augmentin for it. I felt okay the first 2 days, but today I have been really tired and dizzy. My eyesight has also started to get a little blurry when I'm reading. Has anyone else experienced anything similar? I usually don't feel that great on antibiotics anyway since my POTs got bad. I have 9 more days of the augmentin, and I want to continue to get rid of this crud. Just wanted to know if anyone else got really dizzy from taking this antibiotic.
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