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I too was told to have a full MRI of the spine for suspected Chiari, maybe they are cutting corners or trying too.

Has anyone on here after taking so many meds, actually felt worse and just had to have a break from anything new after just being to sensitve for a while. I am at the point where i dont think it matters what they give me at present, i need a break after so many this year. Has anyone gone back to trying new meds after feeling this way and found success with tolerating them again a little while down the track?

Just wondered what you all thought to this. Im not sure myself what is correct and what isnt at time. My Nuero (headache expert) told me that the theory of blood vesells expanding in the brain due to EDS and triggering Migraines, was 15 years old and out of date. There fore Midodrine, which i thought could have been adding to the the problems of migraine by the constant change of contricting and dilating appears to not be an issue. I read so many times about the stretchy blood vesells not helping migrainers with EDS. Is this not realy relavent then? His opinion was that POTs migrainers are more to do with a nuerological desease route cause, which was very different and what my main problme is. Shame that becuase i cant seem to fix either at the moment!!!

I would like to add to some of the earlier posts here to. I know those feelings all to well this year, i finally had the diagnosis of Pots a year ago and in my desperation and sheer "frustration" as Zap called it, when one drug wouldnt work i went straight to the next. I have ended up at the end of this year being so sensitive to ANY drug through what i believe you could only call killing my system with meds.These oral meds didnt help or agree with me and so i have decided to stop any new treatments for atleast a couple of months because i feel my body needs a break. I am of course stuck between a rock and a hard post, i have daily chronic migraines and a stupidly fast heart rate, but i believe taking too many drugs in too short a space of time has done more damage than good, those original benefits i found relief in particularly with the "side effect free" botox and nerve blocks has been a waste of money, where i have been on CCB'S, Lyrica, and many more all to distrupt my headaches and heart rate even more. Im very much the sort of potsie who when i have a bad reaction its days in bed and long recovery. Im giving myself a break for a while and detoxing on Milk thistle and homeopathic treatment whilst i await more tests in other areas to try and find why i havnt been doing well... But your words of Frustration ring true to me, you are frustrated becuase you want the meds to get your life back and yet they can sometimes make things worse. I think thats what people dont understand half the time. There is no quick fix to this.

Where i suffered with terrible sickness before DX i had a gastric emptying scan, I also had a small bowel manomentry, which is not very nice to have done but its a wire essentially that runs down your throat to your tummy and intestines to check they are contracting and the movement is working ok. You see you can have a stomach that empties with in normal time limits, but the problem could be when you digest in the small bowel. Any number of things like this can make you very sick. Where exactly is he talking about a blockage? They thought my small bowel could have a blockage and the tests i had ruled this out. Im sorry you are not able to enjoy being in your most favourite place, its mine too and i wished i lived near the sea for the exact same reasons as you. Can someone not give you what we call a "piggy back" in the UK, I dont know if you know what i am talking about here!!! or carry you to the beach? Can you get a big umbrella, sit under it with a cold glass of water just for five minutes and alteast get some sea air in you? You might feel just a bit better and forget about what that Dr said to you.

Ive had to stop my Midronine for a while as i have ruled it in for certainly causing or certainly adding to my major daily migraines. My worry with Florinef is that is it likely to cause more headaches and migraines again? I know Florinef does not work on constricting the blood vessels like Midordrine, so can anyone tell me the main reasons Florinef can give people such headaches.

There are muscle relaxant drugs they have offered me for migraine, not tried them though, for me when my neck and shoulders are bad i have a giant heat pad i lay on. Seems to help.

Hi Kim Yes i have had constant nausea for 5 years, not a single antiemetic, H1 blocker, diet change or motility drug, or anything really helps. I did see a a Nuerogastro last year who in last case chances does fit them so I was interested to see if anyone on here has them.. I get like a tripple dose from the POTSs EDS and Migraine that cause my nausea to be at such a high level. Its strange last year i literally stopped eating and it was relentless, now i make myself eat and its slightly better but still daily and one of my main problems.

Has anyone or know of any one who have had success with this device? I have had it nausea for the last 5 years at wondered if it has been used in anyone on here? http://ukpmc.ac.uk/abstract/MED/11839337/reload=0;jsessionid=B6GeExvFQk3KZJFFwT2O.12

I think, coming on here, reading people personal posts, reading the real academics on here who post new Research and Mayo clinic info etc, it all gives me hope there are people trying to look for different approaches. Oh sunny days, neck massages and hot showers are temp fixes!!!!!

Just to update you on the MELAS thing.I went to ER today because i felt so terrible on Verapamil, they did my full blood works re done and my lactase was normal so thats good news it rules it out. But I am still going down the immune system avenue and thanks for your input on this so far.

Thanks for all info, I have tried reading up primaryimmune.org. and those types of sites and I feel whether its an auto immune deffiency or desease it needs to be looked or atlease ruled in or out! As far as the MELAS goes the Dr said it could me a fluke, the diabetes or something more serious like MELAS being present. I have symptoms of it yes but the trouble is i have symptoms of so many things when you start reading, i can not be satisfied that the fact the Lactase test came bac as "can not be tested for" though. Im hoping my referral will not be too long.

I was starting to feel really sorry for myself and hard done by in life, then i read your post lol You just watch and see how much sympathy you have for that broken ankle now!!!! You will be like - my broken ankle will heel people!!!the rest of me wont lol!!! I only say this becuase i broke my finger last year and with everything else wrong with me it really didnt matter and i was like "so what its a broken finger? if only that was my one problem".......we are tested at times!!!!

Sorry my spelling is a shocking tonight, Im not doing too good tonight, I meant MELAS http://en.wikipedia.org/wiki/MELAS (i figure whats another one anyway, they cant cure it lol!!! Im not convinced i have this, but i know something else is going on. This week i had my GP re check my lactase and it came back as "can not be tested" Great!!! From the autonomic testing i had done i was assured i have no form of diabetic nueropathy involvment in my POTs, Im not so sure but that was the UK's expert in POTS who told me this. This year i am convinced it is not just the EDS playing a role here, i am so sick so often, most times i come away from the local drs surgery i pick up a virus of some sort. Every new this year drug barr clonazapam and botox has made things worse, Im on day 2 of such a low dose of Varapmil and i have chills already. You know when you just know in your instinct they are missing something major, hence why i have pushed for an Immunologist and Geneticist. I dont really know what to say to the Immune expert when i get there even!!! But the fact that just becuase your ANA is negative does reasure me i am not imagining things here.

well that makes a nice change for once!!! Nothing worse than chasing PA's who really cant help!!

Have you ever offcially been Dx with Hypovolmia, i know you have plenty on your plate!? I know they say its hard to get an exact result hence why I am wondering if bloods are not enough.

Thanks Arizona girl, they actully found ou the high latase becuase i was in ER with very high BG levels, but what they couldnt understand was why my acidity level was normal nd once they had flushed me through with Saline twice and my sugar levels were stable my lactase was even higher! The dr sadi its either, the diabetes, fluke or MLAS (which isnt so nice) hence why i have been asked to see a Immunologist soon. Thanks for letting me know just becuase an ANA comes back normal that is not the end of it.

Issie I have just had blood taken for cortisol last week (11.am) could that come back as normal when in fact a 24 urine sample should be taken? They are checking for hypovolmia too, but should i request sodium to be done by a 24 hour urine aswell?

I was wondering if you can have a normal ANA test but still have autoimmune problems/conditions going on that would need further more in depth testing? I was told i have a high Lactase in the blood but no abnormal acidity level which the dr said was "strange" but nothing to worry about......hmmmm i think we have all heard this before?

Is there a name for the condiditon where the defect in you isnt breaking down the estrogen? Ive just had my GP run tests on my renin and aldosterone and i am waiting back on those results. should i now ask him if he can test my all the hormones we are discussing here or is this when you need a referall to a Gyno? Endo? Im waiting to see a geneticist in the coming months but i dont suppose this is their field?

So you have to be tested before you can try the progesterone cream i am pressuming from what you have said. I will ask my GP about it next time i see him.

Thanks Katie for the graph too, so both hormones decrease once periods start...

Please do let me know how you get on with this.I am thinking of going to a homeopath maybe for hormone issues, i have to try becuase its almaost an entire week out of every month feeling so so bad!!! Not that the other 3 are great but you understand!! As for the Klonopin, thanks again for telling me. I dont think i have been given a single tablet in the last 5 years even if it was for GI issues that i wouldnt say doesnt effect my hormones. Im having to weight up the benefits at the moment and Klonopin and so far i will stay on it. But again thanks for letting me know.

Thank LynI shall give it a try its certainly no big effort if i see some improvement. Is this a cream you can buy in a natural medicine store or is this something you need from your local GP with prescription?

Its nice to know we always have other options for treatments too. Wish you good luck.