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Thank you for your reply. Im really reluctant to have the MRI with contrast for 3 reasons. 1. I had an MRI performed 9 months ago WITHOUT contrast but it was under the care of a nuerogastro consultant who i no longer see, but he is still copied into my notes. 2. I am paying for this and they have quoted me £2500 which considering i have spent nearly £20,000 in the lst 4 years to find a diagnosis of Pots i am really reluctant if its not necessary. 3. The dye obviously is not good for me having low BP and being on Midodrine. My new nuero consultant said to me he is just checking for Chiari Malformation. So should i have my old scan just sent to his PA?

Hello Lauren I am so sorry you are not doing good at the moment. The biggest thing that i was told with my headache specialist was the more daily fix tablets you take, the more you increase the rebound headaches, all that happens is you become dependent on them. You then get diagnosed as "over using" daily OTC medicines, then the headaches just escalate and its a horrible viscous circle you get trapped in. I did go cold turkey with the Codeine and paracetamol and it was **** for the first week, but recently where i have eased off the so called quick fix drugs, the headaches have become less frequent. But i need to go on a preventative daily med still. This is another thing if you take daily OTC meds, they will actually stop something like a Tricyclic or Sebelium (calcium channel blocker) from doing anything. I was told that i may aswell stop taking my Amitriptyline as its as good as useless!!! The Botox has most definitely half eased the pain and not interfered with my pots what so ever so i would recommend it. It has helped me quite a bit

Juat a quick question for people on here, i am due to have an MRI scan with contrast for CM. I am just wondering as i had posted a while back about having bad reactions to the dye and some one else has also just posted this. Is it possible to have CT scan or any other type of imaging, so you do not have to have the contrast injected. I tend to usually not do well on any new meds so i am concerned. Any feedback welcomed.

Ive just looked at my spelling on that post and today is a brain fog day lol!!

Just to add to this thread, I have had pretty close friends and family ask me to tell them whats the matter with me and why i have been ill for so long. What makes me laugh is they give you a window of about 15 seconds before there eyes start to drift and they are not interested. Can anyone tell me how to expalin pots in 15 seconds becuase we all know these types of people. And so many of us it isnt just the Pots, its every thing else we suffer with too!!! I came up with a great tage line the other day. " People only want to talk about illness, once you are better"

I have had every possible test on my stomach known to man and they are very unpleasant all of them. A gastric empting scan is where they will have you eat a small sandwhich or oats and then get you to blow in a special bag at timely intervals in the hour,but in total spread over 4-5 hours. From the breath test they measure certain gasses to see how fast your stomach is emptying. The other type of gastric emptying scan is when you eat a nucklear type meal and you are scanned as they can watch the food travel through your stomach and intestines. Then there is a 24 hours small bowel test where you have two wires put down the back of your nose to your small intestine, and the worse part about it is you can not be sedated for it. You have to keep these wires in places for 24 hours and the computer you wear on a satchell reads the contractions and rythms that your small intestine is doing. You can have a normal emptying stomach time, but a slow acting small intestine, depenind on the patient. But having an endoscopy for Gastroparesis is not the best test to have in my opinion nothing will show up unless there is an obvious blockage or ulcer or hiatus hernia .

That post you just wrote Issie did make me smile. I think you are right about us being in tune with our bodies. I have an auntie who will not even look at her own x-ray at the dentist because she "doesnt want to know". Almost scared about whats going on in her own body. How are you going Issie with the clonidine? Have any side effects eased for you?

so when i go for this MRI do you think its sensible to have someone there after just incase? We can never tell what we are going to react with horrible condition, things most normal people who go for an MRI dont have to even worry about.

Does this mean all of us with EDS are all officially insane and unstable !!!

Yes I think you are right with that because they ask if you are allergic to is it shell fish or something strange??

I am having an MRI scan next week for this because migraine had been diagnosed but they want to check for Chiari. They are using contrast this time. Has anyone felt strange or poorly from the dye they use in your system when having an MRI?

Thank you Libby for sharing that. Hmmmm quick nasty temper, I think that can be me sometimes!!! Will be sure to add that to the list.

I have my appointment with Prof M coming up and although I have tried many drugs this year that sadly have not helped my Heart rate, i would appreciate any advice as to which drug maybe the one I should discuss with my Dr. I have been on Mirtazapine and Amitriptylin in the past and these particular group of drugs made my tachy worse and both lowered my BP even more. I am on Midodrine for low BP you see. I have done a lot of reading and have had people on here describing to me how they got on, so it would be great to compare them and hopefully discuss the right on with my Dr. I am so tired of being put on drugs that just make me worse and knock me back another 5 steps. If I have become "wired" or restless on the Mirtazapine and Amitriptyline, i really want to get this next step right and not take another SSRI that could do this to me again, although i know its a case of suck it and see half the time... Do people on here think this would be a good list to discuss with the Dr? Lexapro Paxil Cymbalta Naltrexone (I know this stricly is not an SSRI)

In the last 5 years of searching for an answers as to why i am loosing my life more and more day by day, i sat infront of all sorts of Dr's who quite honstly didnt have a clue. Thank god this year i got infront of the right people and atlast had the RIGHT diagnosis. My rule i have now with new Drs is if I dont like their manner with me, regardless of what qualifications or knowledge they may have on an illness, if they are rude or insensitive I will not see them again. I firmly believe if you dont have a good relationship and trust and respect with your Dr its far harder to get better. In my opinion anyway.

Oh this has made me smile today.... Atleast we can laugh.....sort of!! I have been talking to a lady on here who is going for an injection (nerve block) That can make the Tachy far less bothersome. It works on sinus tachy so i really dont know much about it but she has pots and is giving it a try, does anyone know about this???

I know this is probably not a fantastic question to ask, but nobody has ever answered it, especially the Drs. If you live with daily Tachy, how much stress and strain does it put on your heart, do you think that alone can decrease life expectancy by much... Oh what a cheerful post this is.... !!!

Its a difficult decision and one that you have to decide on. Maybe speak to your boyfriend about what it is exactly you are worried about happening. Tell him how you crash if he doesnt know. Like you said its nerve racking enough meeting the parents......(Theres a film title in there!) If he really wants you to meet them and you just feel you can not go, then get them to come to you and visit you another time on your ground.

One for Issie here, what exactly is Motion Mate, I would like to try it.

I know what you are saying by not wanting to ruin his trip, once you get to his parents house you have to be sociable and meet and greet and do small talk which is hard when you feel terrible. The stress of having to meet a new family really is enough to give anyone one a migraine! Be thankful they are not new inlaws lol!!! Im just kidding, but the reason i say that and know how you are feeling is because i have a fiance who is Australian and he wanted his parents to come over to meet me not so long back. At this point in time my migraines were undiagnosed so i struggled to have a conversation with two people because i couldnt look from left to right with out the room spinning. There was no way i wanted to meet them when i was at that point so i had to be honest with my fiance and say i was sorry but it has to wait until i am in a better state of health. Its a difficult one because like Issie said you want to do these things, and sometimes things go better than you expect. My advice is if he sees how you struggle with Pots on a daily basis and he wants to be part of your life, then he has to except you and all the rubbish from the Pots that sadly goes with you. I would say to him you would love to come and meet his family, but he must tell them or pre warn them that the traveling and heat for you really effects you in a bad way. Say to him that the chances of you having a migraine are pretty high once you get to your destination and if you have to lay down for a few hours(or longer) you are not being rude, its just part of your condition. As soon as you have a chance to recuperate for a few hours or whatever you will be better and you can relax and enjoy getting to know them all. If he is someone special in your life he and his family shouldnt have any problems with that. If they do well thats another post......

Hi Libby I know just what you are saying, I had a relative say to me not so long back..."so when are you going to have a baby?" Have a baby are you serious???? I can just about stand up, walk and feed myself let alone doing it carrying a baby! I just couldnt be bothered to even go there and i just smiled and said "oh one day". Another thing that really annoys me is when normal people complain they are exausted or shattered, and you think to yourself gee i wish i was exausted from working a normal 9-5 day job. What are they complaining for? Becuase they over ate at lunchtime and they had to much wine the night before..? But what can you do, its an old cleche but people really do not understand what its like to be ill until it happens to them. The only way i can make myself feel better at the moment is join places like this, research the net for new treatments and approaches and make it your goal to improve each condition you suffer from one by one. I have learnt that me/Dr's can not fix everything at once. This sounds terrible but write a list in order of your illness as to what effects you the most in daily life and tackle that problem first, then go to the next one, and the next one, and the next one, and next one lol...................................................................................

I do not travel well at all because i have Migrain/vertigo with my POTs, but a long journey for the UK is about 2 hours because we are so tiny! Still 2 hours for me I would worry so much about and how i would be at the other end. Traveling was worse than exercise, food or practically anything else you could imagine. Best advice i would say would be to explain to your guy that its best if you could lay down in the back and try and sleep. I would try and stop as often as you can to drink and walk around for a minute, then carry on the journey when you feel you can and you are ready, just dont rush it. I have had some awful journeys but just had to do them because i have to see consultants and have tests. I would say to your new man, if it takes you double the time to get to where you need to be, then it takes double the time. If he cares for you I am sure he wont have a problem with having a few extra stops.

Ahhh i see, big difference. Thank you for more info, it sounds like it is quite a powerful drug, maybe even more than Florinef and they have warned me that that had could have an effect on the Diabetes. In actual fact after all the testing I had in the Neurovascular and Autonomic department in London it turned out there was no nueropathies due to the Diabetes, its was mostly blamed on the EDS! I know this is a diificult question to answer and everyone is different but in your case you must feel the benfit from it? I seem to just read bad stories with dDAVP, surely there has to be some good cases about.

Thank you for the comments. I was looking at dDAVP, i am also type one Diabetic. I guess you just have to try the drug to see if it can be of any benefit. Could you tell me what if any side effects were suffered from this drug? Do you get very dizzy on Aspirin? I can not take it because i literally stagger if getting out a car or out of bed when i take even one. I feel this could prove i do have Hypovolemia as Aspirin thins the blood. Would i be right do on this do you think?

Do you know if there is anything like that for on the UK? Out of interest because i am new on here, what is the ration of nationalities? Does anyone know?

Thank you for that corina, it will go down in the notebook of "things to ask the dr". x