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About Kathy_Ireland

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  1. Hello Janet M and Jonathonireland ( I wonder if we are related:D) I'm also in Ireland and I think that it would be great to have a support group here. I'd also be delighted to add anyone to my msn to chat sometime so PM me if anyone is interested! I'd say that putting messages in Irish CFS support groups would find lots more POTS sufferers too. It would be great to have some POTS friends but also to be able to have a network of Irish specific information on the condition,like what drs are understanding etc. Nice to see you both here
  2. Rene , I dont know you but I just wanted to let you know that I'll be thinking of you and will say a prayer that you'll get well soon. I'm so sorry to hear you're going through all this.
  3. The CFIDS association are having a live talk with Dr Medow on OI in CFS and the research of his team in New York Medical School into OI. I hadn't seen it posted here so I thought you all might like to made aware of it.Participation is limited to 1000 people so if you want to take part you need to register now at the link below to make sure you get a place. Apologies if this has been posted before.
  4. Hi Macks Mom and everyone else The test kit is available here : http://www.vipdx.com/ There is a Q&A on XMRV here : http://www.wpinstitute.org/xmrv/xmrv_qa.html If anyone would like to watch the Dr Oz segment on XMRV CFS it's here : http://www.youtube.com/watch?v=_WEUC7hRXzM It's exciting news for all of us with a CFS diagnosis. The test is not available to anyone in Europe yet unfortunately. We all just have to hope that the research going on now replicates the findings of the WPI study. My fingers and toes are crossed. Kayjay: You can't pass it on like you would a flu or regular virus. I
  5. I found Florineff a bit of a disaster too and while salt tablets make me feel worse I find including alot more salt in what I'm eating makes me feel better.I'd love to know what exactly causes the period boost. It makes such a difference to me in terms of stamina and symptoms that if I am well enough that is the week that I'll invite a friend up or plan to do something small extra. I wish we could find out what it was. Maybe now that there's two of us on the case we will! Have you ever tried contraceptive pills? I've been very tempted to try them and see if they'd make a difference but I'm aft
  6. Hi dsdmom.I have had shingles since getting POTS and was treated with an antiviral that went under the brand name Zovirax.There was a cream and a course of tablets.I had no I'll effects from the treatment at all.It not impact on my POTS what so ever either.The only affect was that it helped my Shingles.I hope that's reassuring and that you recover soon. I would be very interested to hear how POTS patients have fared with Tamiflu too.From what I have heard it can be very severe on the system of healthy and cause alot of GI problems including very bad vomitting.
  7. Hi everyone. I am a homebound body too and I can fully understand how you're feeling kitshalleen. I'm 29,single, hate the loneliness of being ill and I even knit/crochet sometimes too ! The isolation of physically not being able to go out into the world is bad enough but also feeling so sick that you can't have people come in to visit you or that you can't chat on the phone with friends is just horrible. It's very difficult for other people to understand when you say you aren't able for those things too. It makes hanging onto any connection with the outside world so hard. Like everyone elses
  8. I think that this is the part of the article from Ramakentesh that Sue was refering too : Is this right Sue ?
  9. I don't think the transcript will be available on the site until next week. However as I was logging off I noticed an option to save the transcript so I did. I will copy and paste it here for those who did not get to log in for the real time chat. If me posting it is inappropriate or against any rules I apologise to the moderators and ask them to please delete my post. Cleveland_Clinic_Host: Today's Live Web Chat with Fredrick Jaeger, DO will begin at 12 noon EST. Dr. Jaeger is an expert in Autonomic Disorders and will be answering a variety of questions about the different forms of it. Please
  10. Thanks everyone. There are some very good ideas there.I use a seat in my shower but for some reason I still find it extremely arduous washing my hair. It probably doesn't help that we have dreadful water pressure here which means rinsing hair takes four times longer than it might in some showers. Smiles I had never thought of drying my hair like that but I must give it a go! My blow drying is another thing that's suffered sinces POTS arrived on the scene as having my arms up over my head just makes things much worse. I let it dry au natural these days which takes forever. Broken shell I will
  11. Since I have got POTS and NCS I find the shower can be awful, particularly if I'm trying to wash my hair. I think it's the combination of being upright, the heat and then having to put my hands up over my head for a time to do my hair. There are times that I'm just not able to do it at all and when I am, it invariably exhausts me to the point that I spend hours recovering from it. Sometimes during bad phases I get so sick in the shower that I have to come out and lie down before I've finished my hair at all. Recently though someone pointed me in the diretion of something that has made a big d
  12. My life is bed and the couch too. I've only managed to get as far as the couch in recent months so it's still a bit of a novelty and even at this level of disability just being downstairs for a few hours every day feels more like real life so I love it. On exceptionally good days (there have only been around 4 or 5 of them them this year) I have managed to go out to a cafe with my mum. There are only 2 near my home that she can park right outside the door from so they are the ones we go to. It's absolute heaven when that happens and I honestly feel like kissing the ground there on those days!
  13. Thanks for that Maggie. I have all kinds of weird reactions too to things I expect will help so I'm kind of nervous of trying new things at this stage. I rang the head office of the company today and they said that they had never heard of POTS but they had a 30 day money back offer if you were not satisfied with the product for any reason. I think I might try it on that basis and then if it all goes pearshaped at least I won't end up out of pocket. That machine you mention looks interesting Ramakentesh. It's good to see some non invasive, non drug treatments enter the cardiovascular arena.It
  14. I find that my resting heart rate can vary alot depending on how ill I'm feeling and what phase I'm in. During a good phase while lying down it'll be between 60 and 80.During a bad day it'll probably be between 90 and 108. Sometimes it has spiked up to 130 and higher for a few hours just lying completely flat and quiet - I tend to feel scarily ill at those times. Also all my holter monitors have detected HR runs of 153 at times durng my sleep. I've equally had really bad timess where my lying down HR was 50! It just seems to go all over the place. I think that might be why I've reacted so badl
  15. Has anyone tried The Circulation Booster machine? It's a home use machine that uses small electrical impulses to stimulate muscle contraction in the feet and lower legs to improve circulation. You just sit passively with your feet on it for 30 minute a day and supposedly it does the rest. It claims to help all sorts of circulatory illness from Lymphodema to Peripheral Neuropathy. It doesn't mention POTS anywhere on the website as a condition it can help but it does mention irregular blood pressure and pulse rate as symptoms of other illnesses that it can help. It also says it can help those wh
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