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I have never been a fainter with my pots, even when my heart rate would be sky high, yet when i get a bad migraine, my strength from my arms and legs just goes, my visual awarness is awful and i feel more close to fainting through migraine than low bp and and high heart rate to do with clasic POTs. Interesting read

I hate that feeling of nearly being sick............... but not quite. I think the saliva thing is your body ways to protect your teeth when the stomach acid come up....Not nice!!!

Im sorry you are not doing good. Its a tough one because when you dont eat you have no energy, your heart has to work harder, yet you then eat, the nausea and pain can be terrible and your heart still has to work over time to now digest the food you have just eaten.

What are the stomach meds he has given to you, for me metoclopramide made my stomach cramps even worse, and i am sure i have read for MCAD its not a god drug to take.

Only thing i had to watch was if i went to a liquid diet for too long, when the time came to eat solids it was very hard and worse before i stopped!!! Its like having an old car in the garage, you have to take it out for a drive now and again even though its a rusty heap and you dont want to!!I sympathise with you becuase its not a nice situation to be in.

Hope you feel some relief soon.

After an article in the major press in the UK i asked my nuero about this.

I can not get in on the NHS but it is £158 per month to lease from the company and for migraine with aura its proving helpful. I think i will give it a try for a month to see.

Anyone else had a go?

http://www.eneura.com/

I asked my last cardio can you have IST and POTs as my resting heart rate is between 90-100 usually, his answer was quite hazzy and said he felt IST was something people can live with, and its just your heart beats fast and you would have fatigue from this and not much else. IST you dont get all the nasty endless list of traits you always get with POTs.

What i dont understand and what worries me is so far i have managed to get my resting heart rate of what use to be 120 to say 90 now, and that is an improvement, but what happens if i live to forty ? and then 50? and no other meds work in the mean time, how does a resting heart rate of 90bpm effect me when i am older, that worries me. Also can anyone explain to me why abbliterations that they carry out on IST people are not done on POTs patients with high resting heart rates, i have read it makes things worse. Does anyone know more on this?

Im seeing a nuero at the moment who i like becuase he is always looking for new answers and approaches. He came back from a conference recently in trying to look for the causes of migraine and headaches in general. He couldnt say for sure what the link is for POTs and EDS people but he did say there is a lot more to headaches and how they manifest than they origianlly thought.

The good news is they are learning more and more.

He said that there was a study done in some pain managment people, and how they do know that migraine is a nuerological desease caused by us not being able to process normal stimuli like non migrainers, sound, light, movement etc. Then he said the key word, migrainers dont "automatically" process stimuli properly. Well shock me!!!!! what does work "automatically" with a lot of us on here?????? thats the problem with all of us isnt it!!!!! They also found out that they believe when it comes to adult hood and having pain associated conditions, if you are a new born baby, you maybe be less likely to develope such chronic pain issues compared to that of an on time or late baby. Reason being new born babies are introduced to needles, tubes and pain at an early stage when our brains are developing. Quite interesting i thought. So they are at least still tring to find new reasons and links!

And they wonder why people risk buying drugs from the internet! (Corina I am not suggesting for one moment that is what any of us should do, just simply saying i personally can see why )

Well when i say they offer it to POTs people here, its not licensed here for POTS, but we can get it. Ive read quite a lot of your old posts and your tachy rates are very much like mine, i can get breathless when nerves too, so i try my hardest not to ever get nervous becuase im lousy at hiding it lol!!! Your heart beats in your throat!

So maybe if i hadnt have reacted to it, it would have corrected the tachy, it could possibly really work for you. It must be so frustrating knowing about a drug that others in the world can get and you cant.

I was given Ivabradine a while ago, they do offer it to POTs patiens in the UK, its used for Angina here to as it only cost £1.50 a day, so its a cheap drug. I was gutted that i had a histamine reaction to it with terrrible rash on my legs that was on fire. Such a shame as it did begin to slow my heart down and not really cause my BP to drop. I am sure it could help a lot of people in the US who cant take BB's. Wonder when it will be approved with you guys??

Thanks for that, i am one of the potsies thats feels better when the sun shines and its warm! Maybe that is a tiny part of the reason!

If you are sensitive to meds like me i would start on even quarter of a tablet, that what i would do with any new pill dr's would give me. Even if the tablet was the lowest form you could take i would quarter it. Better to be safe i think and not rush

Hi everyone

Thought i would share this bit of information, as i have just got back from a consultation with my gastro/nuero in London and have some good news to tell you for the future if you have EDS.

So i was told. Prof Aziz and Mathias have just come back from presenting a clinical based thesis of 1000 people with EDS and health problems they encounter and how they have accumulated enough evidence in the medical world to prove that EDS causes so many other health problems or conditions like POTs, Joint problems, migraines, dislocations and ruptures.

Still at this conferance in the UK there were those high up in the medical world that were trying to disprove this link between EDS and other health problems, why i do not know!!! Anyway the good news is the evidence can not be denied by other top professors anymore and now the next step is they will be applying for funding in bio genetics to actually begin to look into how to change or alter the DNA structure of our collagen to actually reverse the EDS!! So maybe we will see the day when our EDS can be fixed, and then so many of our problems that are an off shoot of this will no longer happen.

I know its going to be years but it a right step at least. I was shocked to hear that in the UK these top porf who have dedicated their lifes work to EDS/POTS/CFS have accountered such ignorance and arrogance to deny that people with EDS can be the route cause to so many illnesses that are going misdiagnosed.

When i hear more about if they do recieve this funding to move forward in the world of genetics i will let you know!

Thanks Jangle,

Im going to see a new Immunologost this friday, do you think if i take some of this information along to her it may help translate to her what i am trying to get at with the POTs/Immune links. This Dr has no background of POTs so its going to be a real interesting consultation. Im going to ask about the AChR and other autoimmunity pannels, then really watch her face wince if i show her this!!!!!

Slightly off topic but i know if pregnant you shouldnt be on SSRI's but can i ask women on here what they have done in this situation. Is it safer to stay on or off?

Initially before my Pots was dx, my problems where all GI. I have tried nearly every med designed to help digestion with problems like you describe. Domperidone, Metaclopramide made me worse sadly, anti nausea drugs would make me throw up! Ordansatron and cyclizine etc! I was put on Mestinon becuase it can help pots symptoms by vasoconstriction and it speeds up your motility so you may want to think about trying that possibly. In the end grating ginger root and sodium Bicarb helps me the most, and i have tried everything when it come to GI meds!!!

Oh i did go on Resolor (uk name) and that really helped with bloating for a while.

i get extremely dizzy on standing when i take Aspirin, i literally stumble, so for me i know it effects blood pooling and blood thickness in me.

Me too, Im glad you feel like for now you have someone who is prepared to try new ways to possibly help.

Thanks for putting the exact details for Auto immune blood works. Im seeing a Immunologist in November in the UK, I know she has no background in POTs, trouble is there are not any in the UK that i could find with POTS interest. So I am hoping when i present this to her i dont get the "huh" look!

Do let us know how you get on.

Wow that sounds like it made a drastic difference. thanks again!

Just wondering what natural remedies have helped with Tachy?

I see posted on here motherwart, anyone have success with anything else?

Thanks

Thanks Angela

I have read similar things, it seems a bit concerning that my neuro said it was nothing to worry about. Maybe the size of mine is not considered problematic. But i think its worth a second opinion i think.

I was the same as you, ok for about a week and had my heart rate down in the 70's which was fantastic for me, after a week i had a really bad scary reaction that meant for me personally i had to stop at once. It took me 3 months to be able to sleep on my left hand side once i had discontinued the BB. All i can say is go very very slow with putting up your dose, so atleast if nasty thing begin to happen, hopefully it will not be so full on or unpleasant.

My symptoms with the beta blockers began with pins and needles in my arms and legs, then it began to give me sharp stabbing pains in my heart which is when i knew it wouldnt work for me. This was Bisoprolol though.

Can i ask has anyone else had this show up on a scan.

I was told my mri with contrast was fine apart from a cyst i have called a Rathke cist, which in my notes said i have probably had since childhood.

I suffer from terrible migraines as i am always posting amongst all the usaul pots things. This is one of the top Nuerologist in the country so if he says it is not impacting on my pots or headaches, should i except this?

I know they are benign, but has anyone had this and it did interfer with their pos and headaches.

Many thanks

Has anybody had the exprience of having nerve block injections, that work for the pain, but then bring the nausea and vertigo to the forefront? This happened to me and i couldnt believe it. One thing taken away, another multiplied by a thousand!

Can anyone give me any advice on this, because the occipital nerve block injection took away the pain, but made other symptoms worse, if i had an abliteration or have my "frozen nerves" could exactly the same thing happen with surgery as the injection.

My problem is i am terrible with drugs and they do more harm then good, so although surgery is more drastic i would be willing, but my nuerologist says no.

Can anyone tell me how long and at what point you have to be in for nueros to take more drastic measures if drugs make you seriously ill?

I am colllecting autoimmune data to take along next month to my new Immunologist too.

With articles like this, when you present it to Immunologists who do not know much about POTs but hopefully they will understand what this means on a autoimmune level.

Again when you present this type of data, what would they be able to offer as possible treatment if any and of course depending on blood results.

I think it is the change that really effects us most. The full moon thing must be something to do with the gravatational pull....spooky lol!!!!!

Im seeing my gastronuero about a a possible gastric pace maker, as in 5 years i have tried so many tablets it has done nothing!!!! I will let you all know what is said to me about having one at the end of the month. I do know the success rate for nausea if excellent. Buts is drastic steps but one i would be prepared to take as i am sick if being sick!