Lindsay Mold Posted April 13, 2011 Report Share Posted April 13, 2011 Hi all. I'm Lindsay. I'm 29 and live in leicester, England with my husband. I've had m.e/cfs for 12 years. Im severely affected and mostly housebound. Mu condition grew worse over the last 3 years. I heard about pots about 18 months ago and thought that it sounded like me but didnt pursue it as its hard for me to go to the docttors and im used to not being taken seriously. i started meauring my hr on a regular basis and noticed a significant increse from laying to standing.I looked on the internet and found a private consultant with knowledge of pots nearby and i saw him a week ago. He took a full history and ruled out depression(which was good, normally doctors try to convince me im depressed) and then did alot of tests in his office.He did my hr and blood prssure laying, sitting and standing. Hr laying was 72, sitting 105 and 30 secs standing 156. he concluded that i do have pots with orthostatic intolerance and my bp dropped by 30 and is seeing me at the local hospital for ttt and full autonomic testing.He said he will do a short ttt as he thinks i will faint after 10 mins.He was really good to be taken seriously after years of being looked at like an idiot and for something to show on a test. i assumed that i have pots as part of m.e but he sid sometimes m.e has an autonomic cause. What do you think?He also said that with pots you dont have symptoms at rest only on staanding. From what ive read that isnt true and its definately not my experience?He is waiting till after the ttt to start medication and when i asked what i could do till then, he said add salt to food but how much do i need? And where do i get compression stockings from? oh and he said something about big knickers?!Hes also checking me for vit d deficiency and found some benign postural vertigo. He said i ight have hyperventilation sndrome, whats is that?Sorry this is long, so many questions! Looking forward to chatting with you all Quote Link to comment Share on other sites More sharing options...
Godsgal Posted April 13, 2011 Report Share Posted April 13, 2011 Good morning.....I'm 29 also and I live in South Florida. Absolutely miserably sick right now so doing my best to help. I have some major brain fog too so forgive me when I ask what is the m/e acronym mean?I just got diagnosed with POTS/dysautonomia in January. It's quite the journey isn't it?Let me say welcome and you will find lots of support, help, and info on this site from people that genuinely care. You are very blessed to have that doctor of yours over there who is getting you set up with the TTT/autonomic testing. That's hard to find sometimes. He is wrong though on the sitting. You can have symptoms sitting, laying, standing, bathing, sleeping, etc. What you can do to help yourself in the meantime is drink lots of fluid and take in lots of salt. You asked how much? As much as you can tolerate considering that 5-10 teaspoons is what the Mayo Clinic expert on POTS told me. A lot of people get salt from broth, tomato juice, etc. Avoid hot showers, the heat, standing much....there is a great list on the home page of this forum about what to avoid. Some people have difficulty with certain foods so keep that in mind. It would be great for you to avoid junk food, caffeine, fatty foods, lots of carbs. Fresh lean meats, fruits & veggies are definitely the key and eat more often in small meals. The compression hose that will help you are medically prescribed...see if your doctor can set you up with those. Make sure you take them off at night. No one told me that in the beginning and I wore mine for days as I was bedridden and too sick to think straight. You mention hyperventilation syndrome. I know that some people with POTS have breathing difficulties, shortness of breath, some hyperventilation. I get episodes myself and I notice that they are in relation to certain triggers (being hot, certain foods, too much physical activity). What exactly are your breathing issues and when do you get them? Also, in your list of symptoms do you have any flushing? Sorry to hear you have this but the great news that I hold on to is that a lot of people get better and learn how to manage their symptoms. It also helps to find out what is the underlying cause for this. Hang in there and know there is a large online support group here to help you.May God be with you and all of us. Feel free to ask all the questions you have! We're all here to help each other.Jared (I'm a female just in case you were wondering. This name! Sometimes people think I'm a man) Quote Link to comment Share on other sites More sharing options...
Lindsay Mold Posted April 13, 2011 Author Report Share Posted April 13, 2011 Hi Jared, tahnks so much for your reply. Its great to have support. M.E is the english name for chronic fatigue syndrome. Ive had it since i was 17. I am severely affected, in bed 18-20 hours a day and on the sofa the rest.I can only stand for a few minutes before the symptoms are unbearable. I have symptoms continually, at rest as well. with my breathing, i feel like my chest is tight and my tummy feels tight too, almost like i have been winded. Im not anxious, i can be totally calm but it feels like i cant get enought breath. Also have crazy feelings of adrenaline and shake even after something as simple as a conversation.thanks again.God bless you, Quote Link to comment Share on other sites More sharing options...
sue1234 Posted April 13, 2011 Report Share Posted April 13, 2011 Linz, I can so relate to the problem you have regarding the "i feel like my chest is tight and my tummy feels tight too, almost like i have been winded".I have had that for a few years, also, and it drives me crazy! It feels like, if you are sitting there knowing someone is going to throw a football at your body, so you tense up to get ready for the blow. That's how I explain it. The only thing I've found in my readings is that higher catecholamines make muscles tense. I have it all day, and some days are worse than others.I really wonder, though, about calcium. I have had low vitamin D levels for a few years, and am trying to correct that with prescription vit. D. I start taking them, then stop, then start again a few months later. I feel like they may contribute to my stomach bloating sometimes, so that's when I end up stopping them. So, I know how important calcium/magnesium is to muscle contraction, and I know my magnesium levels are normal-high.Let us know what your vitamin D levels end up being. Quote Link to comment Share on other sites More sharing options...
rach73 Posted April 13, 2011 Report Share Posted April 13, 2011 Hiya,Nice to meet you. I am from the UK - Devon and my sister has ME and is now being investigated for POTS. This site is excellent for asking questions and has a wealth of information on it. I followed this site for a year before finally being diagnosed in January 2011.There is quite a bit of cross over with ME and Pots, I know you have been ill for a while but you might not have come across this site. I learned more about ME in ten minutes than I did in the 20 years my sister has had ME.This is the site http://www.hfme.org/methemedicalfacts.htm this explains a lot of the autonomic nervous system dysfunction with ME, especially the orthostatic intolerance. It also goes into great depth about the condition itself and explains things really well.There are also many people on here with first hand experience of living with ME. That's really good that you have found a Dr to listen as I know many Dr's in the UK are still under the misguided belief that ME is a psychological illness, so as soon as they see you they want to label you as A. an attention seeker, B. depressed and anxious C. conversion / somatization disorder.Good luck with the TTTRach Quote Link to comment Share on other sites More sharing options...
RockiesGirl Posted April 13, 2011 Report Share Posted April 13, 2011 Glad you have found us I have found this site to the most helpful and informative of all the sites. People respond with kindness and helpful information. I guess we're all in the same boat so it helps. I was just diagnosed in January so I am constantly learning and reading everything I can.Hope your TTT goes well and keep us posted. Take care, Michelle Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted April 13, 2011 Report Share Posted April 13, 2011 I don't know why he thinks POTS only affects us when we stand?? Odd. The nervous system is not working correctly, that is sitting or standing. The symptoms are usually worse standing, but not always.That is like saying my CFS only affects me sitting up. The problems are always there, just better in some positions. Quote Link to comment Share on other sites More sharing options...
songcanary Posted April 14, 2011 Report Share Posted April 14, 2011 Rach,That is an excellent link. Thank you for posting. ` Quote Link to comment Share on other sites More sharing options...
rach73 Posted April 14, 2011 Report Share Posted April 14, 2011 Hi Songcanary,no problem. I think its the most informative site on the internet for ME. I try and put it on as many forums as possible to get the word out!Rach Quote Link to comment Share on other sites More sharing options...
Lindsay Mold Posted April 14, 2011 Author Report Share Posted April 14, 2011 thank you everyone for your replies. Rach, i have been on that site before. It is the best and most detailed one ive found too. Thanks for sharing.Will let you all know how i get on. waiting for hospital appointment to come through. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.