diamondcut

Thanks Kitt. I have asked my pots dr about ablation and generally the opinions on here too is that they are not helpful for POTs, just IST Here is a link to what i am talking about for tachy in POTs patients, it seems that possibly we are getting closer to surgical routes that dont have such bad side effects as drugs. Has anyone else seen this link before? http://www.medhelp.org/posts/Heart-Rhythm/Anyone-had-a-nerve-block-for-Tachycardia/show/1686184

i tried to get onto clonidine twice, and for me it did bring my heart rate down a tiny bit but i went from being able to shop for 2 hours to having to sit down and be very dizzy agter only half an hour, so the slight decrease in heart rate left me more disabled,, so i didnt see the point in carrying on with it. I tried a second time just to be sure and i had never felt so dizzy and weak from any of the pots meds, yet my resting heart rate can be 90-100! Frustrating.....Especiallly when you dont know what pill is doing what. Could you try another vasocontricting drug?

Kitt That is wonderful news you were lucky to find a doctor who cares, and hit pot luck with a drug that helps your symptoms. Could you tell me as i have seen a few people on the net who are having ganglion blocks for tachy, not BP, did he mention this at all? Could you pm me who this dr is and where you are based in the US?Many thanks

I totally agree in that POTs itself was not her cause of death, if her immune system was not in great shape it left her wide open to a lot of nasty things. What i find sad is that there is not really a "celebrity" spokesperson who could draw attention to dysautonomia. You have Lady GaGa who has educated people on Lupus which is fantastic, i wonder who in the future will help us?

I just happened to find this picture the other day, and if you look at the colour of her hands compared to the rest of her body, they practically look blue, true she could just be cold but it has that purlple blue tinge thats something many of us are familiar with. More proof that she most definately had something like POTs? http://www.designhairstyles.net/hairstyle/tousled-hairstyles/

Zap if you know in yourself that Dexamethasone helped you cant you persuede one of your Drs to let you trial it, surely in terms of cost it would be far less to trial that then have more blood tests, do the dr's not believe you when you say what an improvement you felt? It seems terrible that there is a drug you know you feel better on yet cant get acess to it.

Rissy How have they tested you to find out what hormone is doing what can i ask? I want to try progesterone cream for migraines but i am unsure if it will help or hinder me.

I think that our bodies are just so much more sensitive to trauma of any kind, that recovery would always be longer for us whether its a viral or more physical injury. That being said if you feel uncomfortable about the recovery time you should maybe push the Dr's to look into it more for your daughter

I was told to clench your fists or squeeze a stress ball when sitting down or traveling, keeps your BP us, also pumping your calves, like working the break pedals. They were just some tipe my dr gave me, i cant say they made much difference to me though, but worth a try.

As there is a lot of discussion on Pheo, does anyone know if high cortisol would or could be another symptom, i am currently waiting on my 24 hour metadrenalins to come back and wondered this in the mean time?

yes i just got back from a geneticist today and she is the 3nd informed EDS Dr who has confirmed i have type 3 EDS. I was told genetic testing is an option for classical and vascular i believe, but the hypermobility type they have not founf a way to identify this scienctifically yet, so they use the beighton score and just look at your hands, knees, scars etc. you can take a look here for yourself http://www.hypermobility.org/beighton.php

Hi Elizabeth I too see Mathias as well as others to try and manage my pots. Dr Glyn Thomas no longer sees pots patients but i was given a trial of octreotide at st marys hospital by Prof Mathias. Sadly it didnt help my heart rate or BP on another TTT but Mathias does prescribe octreotide as far as i am aware. Does he not carry out QSART test? I would have thought he did?

I have tried a lot of things for migraines, magnesium i was told by the Dr can cuase GI problems in up to 60% of his patients. If you want a some more natural side effect less aproaches my Dr advised me to take a high dose Vit B2 or B12 and high COQ10. There are studies out there that have proven these to help for some people.

Thats something i have always wondered Katie Do breathing tecniques work with hyper pots people? Can you still help yourself to a degree with doing this, even though chemically you can not stop the high level of adrenalin?

I totally agree with that one. i emailed 10 Immunologists and only had 2 back, but i did get one in the end!!

Who is your specialist consultant? maybe you should bypass your GP and get your POTs Dr to write to your GP after your consultations. i am lucky as i have a very good GP in the UK, but sometimes they are not willing to listen or help unless another Dr has put it in writing to them that they feel you maybe have Nueropathy or request for your local practise to perform specific bloods and urine. Thats how i got around difficult GP's. For instance i got my cardiologist to write to my GP requesting a 24 hour urine and some other bloods like vit D, cortisol etc. I totally agree that if your GP is not prepaired to listen then do not waste your time and energy getting mad and angry and upset, all it does is effect how you feel inside and makes you worse. I would look for another GP, take some print outs on Neurally mediated hypotension, and things that you think are effecting your balance and limbs. And make it clear you are depressed becuase of your physical problems that you are not getting any help with thus far. I make a rule that the first few minutes of a new dr you can tell by their manner and general interest if they are there to help. A lot of GPs are very uneducated when it come to dysautonomia. Its sad but true, and a lot will not listen to a mere patient after spending how many years practising general medicine. What is it they say about GP'S they know not a lot about everything. Having said that i am so lucky with mine! I hope this helps. What area are you in the UK? where i am it is not hard to change Dr's.

I am the same a few days before my period and for the first few days are always worse with symptoms and especially headaches. Think a lot have posted how as our hormones drop symptoms become worse.

There must be Anna, I saw prof Aziz last week, i know you told me you have seen him before, he and others have had to make the medical world in the UK recently accept that the data they have produced (specifically EDS ) is causing GI conditions, Nuerological problems etc etc. He said even with the new raw data they have provdided, they are still facing doubt from other DR's. He said there next step is to apply for funding that looks into correction the collagen gene in EDS. I think its so unfair that if they can prove things like migraine exist in EDS patients more commonly than non EDS people, then why cant there be more funding to find out why. I guess until more awareness of POT and EDS exists it just wont happen. I should have asked his opinion as to why. I have had mixed opinions about it being anything to do with the blood vesells over dilating..I know you did post a very interesting link to that last time i mentioned it to you. If our entire body structure is faulty if you like, then i would say its obvious as to why we get so many different types of health problems. Its just frustrating at the pace the medical world looks into it. I love it when you read an article about EDS in the newspaper from time to time. They make it sound like EDS is such a simple thing to have, they usually say the person suffers from loose joints and pain and has velvet like skin. If only that was all EDS brought to the table!!!

Hmmm, i am the same i get headaches or migraines should i say as the day progresses, they are worse by 8pm. You might find if they do not find anything wrong as such with the ENT you should see a headaches specialist and perhaps try a daily preventative for migraine. I have issue that all cause nausea but migraine, even when the attacks have gone is by far causing the worst. The exercises were really simple like holding a credit card in front of your face and moving it left to right and having to stay focused on it. Its to re train the brain with visual and movement stimuli. BUT you have to have your migraines under control by medication before you can attemp this else it makes things worse. I havnt done well getting on a migraine drug, botox has been the best relief. I never realised how much of my nausea and dizzyness was down to migraine.

Have you looked into a Enterra stomach pacemaker. The sucess rate for gastroparesis is something like 70-80%.They can really help.

You can get oxygen concentrators that filter up to 90%, i have seen them on Ebay for about $200 and you dont need to pay for refills as its not the same as pure oxygen. You could always try that and if there is an improvement see if your GP can help in Holland.

Well my old nuero said no he would not prescribe oxygen for my migraines alone, he said there is no clinical evidence for migraine improvement with oxygen. ONLY cluster headach. Now i think many of us here suffer from both in my opinion so i found it quite odd he was not prepared to let me try oxygen, yet he has prescribed Topamax and other drugs which have totally put my body back! i have even ended up in hospital on CCB he thought to try. I know these are the drugs that help millions but i was annoyed when all you have to do is a bit of reading on the net and you will see personal accounts of people with migraine benefiting from O2. Now i wont lie and say its cured me, it hasnt, but it does help and i am grateful for that. My GP pushed it for me through POTS and Migraine as the reasons. For people in Uk and Anna, you need a HOOF form from you GP to fill out. I can say i have an hour a night, and if i get a really thumping head with the tachy the oxygen helps becuase it slows my heart down slightly and helps my head.I think i read the oxgenhelps the blood vesells contrict in the brain also. My skin is better and my sleep, i am so much less dark under my eyes. I think Potsies should have the right to oxgen in my opinion.

I have had oxygen now for the last two weeks, i use it in short high bursts for my migraines, and i use it at night to help get my heart rate down and I am pleased to say my normal resting heart rate whilst laying in bed before i fall asleep is 90-100 This week i have got it down to 85bpm!!! Now this may only be for as long as i have the mask on for but at least it helps, and you never know, if i save on a few beats per minute each night, i may get an extra 2 years or something on this wonderful planet lol!!!! For the Uk potsies on here, its worth mentioning that even though Oxygen therapy is not licensed for POTs, my GP did put it down as my main health issue and thats how i obtained it. Anyone else find it has helped?

Hi Michelle Like Niomi has posted i think this will be the exact vestibular testing you will have to go through. I will be honest with you, the rotary chair test, and there is one where they lay you on your side and poor warm water in your ear until you have this drunk feeling come over you, you have to focuse on an x on the wall whilst laying down, and the world starts to move. Its very unpleasant and you really need to have someone with you for them all as they are not nice. I had exactly the same thing as you , i had to stop driving in fact, i couldnt read a page on a book or look at my laptop, i couldnt even have a conversation with 2 people at the same time, becuase i couldnt look from left to right without the world spinning. They said to me that although the EDS/POTs were causing nausea and sickness the vertigo and extreme sickness, something else was up. The did send me to a ENT specialist for all those tests. They were looking for BPPV http://en.wikipedia.org/wiki/Benign_paroxysmal_positional_vertigo Or any other inner ear related proplem. Anyway after a lot of balance tests/hearing tests and many more later, they diagnosed me with Vistibular migraine. How ofter do you get migraines or headaches if at all? At the time i wasnt suffering from daily chronic migraine which of course is plainly obvoius, but i had maybe 1-2 migraines a week. I was told that if you have a migraine, even once you have recovered say the next day, the messages in the brain can get scrambled and you can suffer from dizzyness, vertigo and nausea even though the migraine has gone. I was given whats called vestibular rehabilitation exercises. I couldnt do them sadly becuase my migraines just grew and grew and therefore the exercises would trigger them!!! You cant win!!! But in my case it was proven it was down to migraine. It sounds a good thing that they are checking all avenues with you though, but maybe you should think about seeing an Nuero if it could be headache related after or with the ENT.

I am very sensitive to meds, but luckily i could tolerate Midodrine, it brings my BP up and keeps it healthy for hours. Side effects were not too bad for me, after an hour my scalp itches like crazy but i can put up with that. I no other have struggled on it though.