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I have also had a mri scan last week and the Dr told me i have a cyst near my pituitary gland but this would have been there since birth and as nothing to worry about. Would everyone agree with that comment?

Is Midodrine classed as a stimulant does any one know, what is its catergory it falls into?

I like that saying too, shall we see if we can have some t-shirts printed up? lol x

My friend who is really healthy, runs 2 miles everyday and has never had an operation or illness in his life, is actually really pale anemic looking and is always tired, i on the other hand have been sick for years, had lots of operations and daily pain, but i make sure i have a sun tan to hide my grey sucken eyes, i put my make up on each day and look healthy. My friend always jokes to me "i look sick but am bloody healthy, you look healthy but you are bloody sick" I have to have a tan and have to put my make up on becuase if i didnt i could not handle looking in the mirror and looking as ill as i feel. I couldnt live each day. I have however realised NEVER go to a Dr's appointment with make up on becuase they judge you on that, purely. My old Prof actually said to me as i sat down for my consultation "you look trim"......What can you do!!!

Does anyone know if this can help slow your heart rate? Or would this drug be more of a stimulant which would be no good for Hyper POTs?

Can we ask our Dr's for this or will they say no until it is trialed fully?

I just posted about those circulation foot plates you can plug and in and rest your feet on, could you have one of those under your desk. My Dr always tells me to flex your calf muscles and squeeze a stress ball if you need to keep your BP up.

I have sent my 23 and me sample back today (after taking me nearly 15 minutes to fill it up with what i can only call spit lol), how long does it take them to give you your results back?

Dana - who wants to be ordered around anyway!!! POTs or no POTs Sorry had to say that, dont take authority too well.... I think it comes from a lack of respect for most Dr's!!

Hi there everyone I have ice blue cold feet all the time and i am wondering if anyone has tried those feet circulation devices, do they help? This type of thing. http://www.made-in-china.com/showroom/dream160160/product-detailxbHmUzvdJgcG/China-Blood-Circulation-Machine-TL-168B-.html

Just checked the label, cant see it on there. Has every vitamin and mineralunder the sun in it though.

That sounds like a really good idea about the thread as i am not the most technically minded student! I will PM you. Its strange but looking at your profile we are both the same age and whay you said about things not being right in early childhood but coming to the fore front at around 16. Just like me really.

From what i am aware of the symptoms of daily headaches that are worse once you get out of bed and are in the supine position, and ease when you lay down. All the usaul symptoms are quite vague and vary from pressure in the neck and head, sickness and nausea, ringing in the ears, balance problems etc ect. I have read that sometimes the fluid that leaks can run out of your nose and back of your throat, but i do not have this. My nuero said a leak would fit with a classic case of low pressue on the brain which most have with POTs.

I have to totally agree with that statement Dana, are we on here because really many of the specialists in POTs dont really know what to do with us once florinef and Midodrine has been chucked at us. It seems to be the real experts like Grubb and others who will lead the way in helping people like us. To say only 10% have Hyper pots i think is false. My old Prof use to say that i wasnt an easy case to treat, but who is easy with POTs patient? When you look at the lists of other conditions nearly everyone has to go with it. Its like a maze.... My appointment with my new POTs Dr went ok last week, he is prepared to try SSRI's and other more unusual meds that are not the clear cut PD line of treatment. He did however say to me I am "the lucky one as i have a diagnosis" I nearly said yes mate, it took you 5 years and thousands of pounds of my families savings later, but yeah got a diagnosis at last!!! So i am the "lucky one" that lost my own business i built up, became house bound for 6 months last year because my migraines became so bad and i had to live back with my parents!!! Oh sorry this is turing into a late night rant, i think i need to swallow a truck load of Magnesium at this point to calm me down lol. It just annoys me that we have to battle to find the treatments to help us. I dont know about blood pressure on standing, i know if they think you have nueropathy it would drop. But i would say it should probably stay about the same in a normal person. Dana how are you getting on with 23 and me. I ordered my kit the other day. Told its like reading Greek though!!!!

I have to second that last comment you just made there Relax, We really are grateful to those hours or even minutes when we feel half normal. I think if nothing else POTs makes us better people because we can empathise with others far better as we have to battle through each day, and yet we look like there is nothing wrong with us physically. Does anyone know the number for the Samaritans please having a self pitty moment .....lol Im just kidding!

Well I again i have learnt something new today, I had one of those lovely Ultra sound type probes up there to have a look at whats what. They ruled out PCOS and a few of the other usual suspects with an MRI scan at the time. But if you say the only way they know for sure is to go in surgically then who knows. All i know is my periods on the first few days have been so painful in the past. They did at around the age of 23-25 give me morphine for them. Luckily now i am a few years older the pain is by far less and controlled by Tramadol. Really my periods effect my POTs more than the crippling pain now a days. It wouldn't surprise me though if i did have Endometrosis. My god 8 surgery's to your abdominal area! How have you managed to stay so strong. I really think its fantastic how you appear very strong with all this. i know just becuase we may look like we are coping on the outside, inside can be a different story.But your advice seems to be so priceless on here. Yes the 23 and me kit has been ordered so in a few weeks i will get some answers! Thanks for the heads up with trying to understand what comes back on it, i struggle on here at times so it will be very interesting to see how i go!! Pulling my hair out i should think!! I hate it when i read things and cant quite understand it!!! I will follow your advice on it though. Will be fascinated to see what come back. Did you do your ancestry kit on there Quick question for you, have you ever trialed Lyrica? You sticking with the Clonidine still?

Thanks for the information, can anyone tell me on here who has Mast Cell Issues, and has had a contrast administered, exactly how long after their MRI did there MCAD problems flair up for. My nuero has been pushing for this to be done for a month now but i just dont think its a good idea at the moment.

There has been many posts i have read on having contrast with an MRI scan for possible CSF leaks. My question is are there any other forms of testing that can be done so you do not have to have a contrast administrated? Im due to have it next week and because i am going through a very sensitive stage with drugs at the moment i really dont feel it is a good idea, but my Nuero insists it has to be done. Any help on this would be great.

Issie With the Sodium Cromoglicate, are the eye drops effective, or does it have to be tablet or nasal form?

Hi Issie Nasal Crom is one that people have said to try since posting, Just bought some online now so at least i can give it a go without involving my GP. I too seem to be on a viscose circle here of becoming more and more sensitive to each drug. Did you start on just one spray a day? Its strange really but all my real evident problems stared at 23, I was having this 24/7 Nausea, headaches and then problems down below all at the same time! Ever Dr told me they were no way related what so ever, until 5 years later they agreed the EDS was causing the pain which all intertwines with the POTs. I have never had Endometriosis and i was fully investigated down there, I did have chronic cervicitis that they had to laser twice when i was 24, and really the Vulvodynia was terrible after that. I couldn't sit on a chair for too long because of the pressure. It was a miserable time and i am thankful the Amitriptyline helps now. I still get days there where it hurts but it is not 24/7 like it used to be. Thats very interesting that after a Hysterectomy your Vulvodynia stopped. You would think because of the trauma in that area it could possibly get worse. Would you agree that Vulvodyia is a type of Nueropathy that we seem to get because of our connective tissue disorder?

Hi LizYes I am 100% on the Ivabradine, after 4 hours of taking a quarter of a tablet my legs were on fire and i couldnt sleep for days. It took 5 days after i discontinued it for the itching to stop. I did try again the week after and exactly the same thing!!! But i am so pleased it is working for you. Here in the UK only a few months ago it was approved on the NHS and it has helped lots of people with Angina. Hopefully it wont be long til its approved where you are.

http://www.nutricia-elemental.co.uk/ I have been taking these for a while now and they really are great for those times when you just cant eat because of the sickness or pain. I know they manufacture these all over the world so its not just the UK. They give them to people with Crohns, but they have helped me. Dont taste to bad either! Honestly!

This is just a quick message because I know its awful when you get scared and so sick and it never seems to end. Eating becomes so hard but you have to do it. Have you heard of Elemental 028 drinks? They give them to people with Crohns mostly but i find them a great way to keep all your vitamins and mineral intake up. When you feel so sick you just cant eat at times and these are great then. Will post a topic and link on them, Sure they sell all over the world too. http://www.nutricia-elemental.co.uk/

Rich I wish i could, I am in the UK I am tempted to have telephone consultations with top guys in the states if it did come to that. I can go to my GP this week though and ask him for Singulair. Becuase i am not Asthmatic I wonder what would be the best way to approach him to give this to me? If i explain i am having a lot of bad reactions to meds (which he knows about anyway) Should i explain the Mast cell Activiation is part of my EDS/POTS problem and i believe something like Singuliar could benefit my breathing and act as a stabliser. But thank you for telling me about it any way Rich. .

I was so sad when Ivabradine gave me a histamine reaction and my legs were on fire for days!!! Also i am with you on that one Bren, as far as Beta Blockers go i was only on them for 2 weeks then had to stop, 6 months later still my heart plays up at night time in a jumpy way that it didnt use to before! I feel exactly the same as you, we constantly look for different approaches yet face the same problems with tolerating the meds.