Jump to content


  • Content Count

  • Joined

  • Last visited

Everything posted by nmorgen

  1. Wow, that's great that its really helping. I will try it. I didnt know that any cinnamon cased cancer. I looked up the cinnmaon I have and it's from sri lanka, so I'm pretty sure it's cinnamon not cassia. I also read that it was the cassia(Chinese cinnamon) that was good for insulin stability. Hmm, I guess I'll have to look into that. Glad your feeling better and have more energy. Is there anything else your doing or just the nut butter and cinnamon? Natalie
  2. I have the same hot cold flashes. I'm not really the typical age for menopause, but according to Mayo that's what my hormones are telling them. I tend to have most of mine at night. I also get the hot flashes after activity, and I think they are POTs related, and I'm sure the low estrogen doesnt help. Go to your gyn and ask them to test your hormone levels. At least you'll know if it's hormone related or just dys. Also, try to relax when you have them. Sit down get a cool drink and read a book or do something to take your mind off of it. They go away a lot quicker when they are POTs related if
  3. I get the occasional shocks, but not really pain, and thankfully it is very rare. I also use soft unscented toilet paper and unscented feminine products. My skin is really sensitive.
  4. Hi Julie, I haven't had any test in recent years for EBV, but I had mono almost every year when I was younger. I read(I'm not sure where, I'll have to find it) that some researchers are thinking that the flu is caused by vit D defficiency. Maybe, our vit D defficiencies are causing the viruses to reactivate in our systems. It seems like almost all of us have very low vit D levels. Whether we are dys POTs or hyper POTs, we all seem to have that in common.
  5. Hi Linda, Congratulations on the grandbaby! Sorry to hear about your healh decline. I can't give you any answers on the mottling, but I have it myself. It's called Livedo reticularis, and if you have EdS, like most people seem to have on the forum it can cause the mottling. I hope you and your dr can figure out what's wrong and get you better. Natalie
  6. Sorry your having problems. I have hyper POTs, from my understanding I guess I've had this all of my life. So, I cant really say that there is a difference in orgasm. I do have them, and they vary in intensity anyway. There is a big difference in my energy levels which has changed the frequency of sex. If you are experiencing physical problems as you stated, talk to your dr. Honestly, even if it's a mental thing you should still talk to your dr about. I wish you luck.
  7. Hi Julie, I think this sounds very interesting. Please keep us updated on what happens with you. If you have good results with talking your dr into testing and maybe trying this I think I will do the same.
  8. Hi, Well my pulmonary dr did some lung function tests yesterday and she thinks that my asthma isn't being controlled, so my inhaler doses have been upped. She is also sending me to rspiratory therapy to see if that helps. So at this point she thinks it's still my asthma causing the drops in oxygen. I go back in 6 weeks to see if I've had any improvement. I hate asthma. Mine used to not be that bad, but since all the POTs stuff it just seeems to get worse. I'm praying that it goes away. If there are any prayer warriors on the forum can you pray that my asthma goes away or at least gets a lot be
  9. Chaos, I was going to mention that if you try to use inhalers after there is a problem, it takes a long time for them to work. They are preventative, and they can help, but not automatically after a flair. They just don't have that capability.
  10. That actually sounds like asthma. That's how it feels when I have an asthma attack. Like you just can't get your breath. Even when you take a deep breath your still not getting that much air. I would see a pulmonary dr and have them test you for ashthma. The POTs like symptoms I get feel like my chest being squeezed and like I've lost my breath, but the not being able to breathe is an asthma attack. When I've been on beta blockers I have had asthma flairs that lasted hours. After that my lungs got so bad it took 2 months to clear up.
  11. Wow! Your friends are lucky if they can't feel it when they eat gluten. I can even tell when I've had cross contamination. I get an instant headache and stomach bloating. That progresses to horrible stomach pain and slowed motility. If I didn't have such severe reactions I probably wouldn't be as nitpicky as I am. I wish I didnt have any reactions.
  12. I've never tried tumeric before other than in curry, but it's worth trying. Would 1/2 tsp be the right dose?
  13. I do have occasiona; problems with over heating, but it usually depends on my level of physical activity. I tend to do ok in heat as long as I can sit down or go inside for a/c periodically. My family usually goes to Disney during the late summer and I don't have any problems. I have always lived in the South and I guess I have built up some heat tolerance. I have noticed since moving to Switzerland that I have problems in the cold. I my pulse tends to drop low(you would think I didnt have POTs at all), but my bp spikes very high. I have been sick almost every 3 months also, from sinus infecti
  14. The mucinex is the best thing I have used so far. Everything else seems to dry my sinuses or works for such a short time its not even worth getting the stuff out and heating the water. Mucinex helps with draining the gunk out of my sinuses ans clearing out any congestion that has found it's way into my lungs. Good luck and I hope you get better.
  15. Hi Godsgal, The shaking upon physical activity actually sounds like hypoglycemia. A lot of us on the forum have problems with this. Just do a search on hypoglycemia on the forum and you will find a lot of information on what everyone is doing to combat this. Also, from your other post I agree that you should eliminate the gluten. It can be hard at first, but even if you are just sensitive to gluten you will notice a difference in a few weeks. Good luck and I hope you feel better.
  16. Hi Alicia, DO you take your blood pressure when this happens? I only get the cold sensation and shivering, not really shaking when my bp spikes. I also start to get nauseated. IMO, when you start having any symptoms it's good to check your bp. Honestly, after a while you get used to it, and in most situations you have an idea of what is going on with your body, bp and pulse. Now the tremors/ body shakes I get aren't associated with cold or hot sensations or anything else for that matter. Everything can be normal(for me anyway) and I can still get these horrible tremors. I havent had them in a
  17. I've had the weird cold sensation before. It wasn't over my entire head, it just felt like a little stream of cold water running down the back of my head. I was also experiencing tingling in my scalp at the same time. I usually only get the nausea, shaking and tunnel vision when bp is getting high. If it happens again take your bp. It could be dropping or spiking.
  18. Hi Lieze, My bp fluctuates all of the time. I haven't found anything that keeps it stable. I also feel bad in the morning. I tend to be tired and have more PvCs and just not feel like doing anything. I really don't have an explanation for it, but sleep doesn't seem to give me energy. Your not alone, and I have no clue how to make it better.
  19. 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.
  20. 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
  21. 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 celia
  22. 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. T
  23. 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
  24. 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.
  25. 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.
  • Create New...