rach73

Hi, thanks for your post. It actually made a lot of sense. I do feel like I am on steroids - which I'm not. My moods are a bit changeable, I can feel OK one minute and feel a bit down the next - which isn't me - but was me on steroids, I'm just not having the rage I had. The sleep pattern is pretty much the same as when I was on high dose steroids a couple of years ago. So I am wondering if it is cortisol. I had my cortisol levels checked in May last year and they came in low normal, I had the next test and that came in fine the short sn (can't spell it or pronounce it). The only way I can describe the feeling is its like when you have had a fright you've got over the initial shock but you are left feeling shaky for a few minutes after wards. Only the few minutes after wards is actually hours for me. Its very bizarre. Thanks for replying, its nice to know I am not going nuts! LOL Rach

Hi, I have to ask you for some advice as the way I am feeling is driving me crazy. I am naturally a worrier and I live with anxiety that I can normally control. I would normally know what I am anxious about.I have been through a pretty stressful 6 weeks, my husband was involved in a car crash and we have been dealing with the fall out from that - solicitors, insurance companies, sorting out a new car and dealing with my husbands injuries. Not to mention the police as my husband was hit by a drunk driver in a stolen car. Things have settled down, hubs is on the mend, new car is sorted etc so why am I feeling like I am in a constant state of panic? Its not a full blown panic attack, I'm not hyperventilating or believe that I am going to die. I just feel constantly on edge. I am shaky and feel restless on occasion my heart is racing when I rest - 140bpm. I just can't understand what is going on and this state of anxiety is exhausting. Is it anxiety because I don't know what I am anxious about or is it POTS - like too much adrenaline in my system? If its anxiety I am quite happy to try and work my way through it. If its a reaction to everything thats happened in the last 6 weeks then OK I will wait for it to pass. If its POTS this is a new symptom for me probably triggered by all the stress I have been under. Also since the accident I have been having at least two nights a week of insomnia. Before the event it was only once or twice a month. Nothing is keeping me awake my body just refuses to go to sleep. I feel tired I go to bed but I don't drop off. Please let me know if you suffer in the same way, Rach

Hi, All of those who have been diagnosed with CFS / ME please take a look at this website http://www.hfme.org/methemedicalfacts.htm This site is endorsed by two of the world leading experts on ME. It explains that CFS is a misdiagnosis and that ME is a real condition that can be tested for Yes tested for. It should not be a diagnosis dished out by Drs who can't work out what is wrong. Unfortunately there is still such a stigma to the diagnosis of ME as one previous poster said it has been known as Yuppie Flu. There is a massive overlap between ME and dysautonomia many of the symptoms of POTS / OI are the same in ME. I am very passionate about getting rid of the diagnosis of CFS and using the proper diagnostic name as given to it in 1969 by the world health authority Myalgic Encephalomyelitis. My sister has had ME from the age of 14 she is now 34. It came on after an acute viral illness - she had problems with her autonomic nervous system before becoming ill with ME. This website is run by a young lady called Jodie Bassett whose life has been decimated by this condition. I am not saying that anyone here doesn't have ME or CFS - I just would like you to be aware of this site as it gives you so much information. How to get a diagnosis etc, what the disease is and what it isn't and why the diagnosis of CFS needs to be got rid of. Plus it clearly explains the symptoms and that its much more than being tired all the time. Rach

Hi Shelly,Corina (everybody) Thanks for the messages. Sorry I haven't replied its been an awful day. Ive just found out that the DVLA are looking into revoking my driving licence on medical grounds. I had no idea that POTS was a illness you had to notify the DVLA about. My Gp hasn't said anything and nor has the hospital consultant. We've had a bit of a crappy month on the 28th Jan my husband was involved in a nasty car accident. He was hit by an uninsured drunk driver in a stolen car. It wrote off our car and my husband has quite seriously injured his spine amongst other injuries. I had to renew my photo on my licence at the same time this happened so sent it off and out of courtesy told the DVLA about the POTS diagnosis! Now I find out any type of tachycardia has to be notified to them due to the risk of dizzy spells and fainting. I had no idea and its come as a huge shock! I completely understand the safety thing, in fact I only drove three times last year for 5 mins a go. Its just hit me really hard my driving licence which I have had for 20 years - endorsement free was my last little bit of independence. The thought of losing my licence is breaking my heart. Silly isn't what can just push you over the edge and make you go back to grieving your old life. So UK Potsy's take heed even if you dont have dizzy spells or faints you are still required by law to notify the DVLA. I will let you know how I get on. Rach

Hi Shelly, what your GP told you about not being able to refer you is a bunch of cr*p! The law changed here in the UK about three years ago and you can ask for a referal to any hospital in the UK. I think his decision has more to do with his practice budget than it does with any concern about your health. A referal to Prof Mathias is expensive several hundred pounds and it comes from your GP's budget. By sending you to a local cardiologist within your Primary Care Trust PCT, makes it a lot cheaper. Anna who pops on here from time to time is more up on these things than I am. The best people you can contact is PAL its patient liason and they will be able to tell you about the referral system in the UK. The only other thing I can suggest is to google referrals in the UK and see what you find. If after explaining to your GP that you are entitled to the referral and he / she refuses then complain to the practice asking them for an explanation in writing. If that doesn't work go to your MP. Im sorry that your GP is messing you about like this. I have just left my practice of 15 years due to their shoddy treatment.So I know what a nightmare it is. Sorry you have to experience the NHS like this. Good luck Rach

Hi, I have a friend that suffers with a type of this disease they are also known as mitochondrial diseases. She has the glycogen storage one and developed it later in life. On the Facebook page of POTS UK there is a posting that Blair Grubb is doing research into the link between mitochondrial diseases and dysautonomia. Blair Grubb looking at possibility of POTS being caused by mitochondrial abnormality: http://utnews.utoledo.edu/index.php/12_10_2010/utmc-researchers-find-link-between-mitochondrial-cytopathies-and-autonomic-nervous-system-function sorry I am unsure how to put links in properly, if its not done correctly could someone be an absolute star and sort it out? Thanks Rach

Hi, The answer is we don't. Never feel like it, and if I ever do feel like it I feel so ill afterwards its never worth the hassel. Luckily I have a very understanding husband who has a low libido himself. Its not an issue for us, we know we love each other and there are a million other ways of expressing how you feel about each other. Hubs tells me at least 10 times a day how much he loves me. We hold hands, kiss, cuddle on the sofa. It doesn't stop me feeling guilty though, probably due to the way the media bombards you with messages that if you aren't engaging in sexual activity you are weird / not normal! You aren't the only one. Rach

Hi the last time I had GA was around 2002. I when I came around I found out they had problems with keeping me oxygenated during the operation. On Oxygen my sats were still only 95%, normally even though I smoke my oxygen sats are 99-100% on air, so you can see that I was struggling a little. After GA's I get very emotional/ depressed for about 4 weeks. Its very odd, I burst into tears at the drop of a hat. The oxygen problem was never investigated so I never really paid it much attention until now. I believe I have always had POTS to some degree now its just a lot worse. I have more problems with local's than GA's. Locals either don't work, I need the same amount as a male bull elephant or they just run out really quick. Dentistry is a nightmare, I had an abscess and it took over 10 injections to numb me and it still flippin hurt.I got up from the dentists (torture) chair and promptly fainted! Didn't know I had POTS / Eds problems then. 2007 had part of my big toenail removed due to ingrowing nail. About 5 mins in I realised I could feel EVERYTHING! The doc is shouting at me as I keep moving my foot - yeah? your sticking a scalpel in it. Told me there was no way I could feel anything as I'd had two vials of local injected. Ended up doing the rest of the op with freeze spray applied every few mins. Dr acted like either a) it was all in my head or I was mad! 2009 - even worse had a lumbar puncture done and the local didn't work.I had numerous injections of the stuff, which hurt. So I just let them carry on and didn't bother to tell them as it took them 4 attempts to get the needle in. I am lucky I have a high pain threshold. Although my language did clear the ward! I know the problem with local's is an EDS trait, so it only concerns me if I have to have dental treatment. Rach

Thank you Corina. I think its Prof Mathias, so I will try and get a referral there. Long waiting list though. It would be good as I believe I have EDS as well and I know he pushes for that diagnosis as well by referring you on. Thanks for posting. Rach

Thanks for that Cath. I kind of guessed there wouldn't be a set pattern for treatment, I just wanted to find out what other people do. Thanks for taking the time to post. Rach

Thanks. I think I will have to push for a referral to someone who is a specialist rather than someone who is purely interested in the condition. Rach

Hi, I posted in January to tell you all that I had been diagnosed with POTS. My appointment came through for the consultant at the end of March so nowhere near the 3-4 weeks he told me. The consultant is a consultant of general medicine and geriatrics! He seems ok, but he just has a special interest in TTT, not sure if he has any other POTsy's on his books. In the UK who do you guys see? Who looks after you and who decides what meds you should be put on? I will be very disappointed if at the first appointment he tells me to load up on fluids and salt as I have been doing this for nearly a year. To stop my wrinkly fingers (look like I have been in the bath) I have to drink over 4 litres a day. I've had to change GP's as my last GP told me POTS didn't exist and his attitude was one of disbelief. I haven't met my new GP yet I am hoping to get an appointment next week. To be honest I am just so fed up with feeling so rubbish all the time - they know whats wrong with me so lets start trying things! I know that nothing is a guarenteed cure but something that could help would be great. Sorry for rambling, Rach

Hi Libby, I am really pleased that you got a diagnosis, but it is a horrible test to go through. I would actually prefer to have a nasal gastric tube fitted (which I've had previously) than go through the TTT again. My TTT knocked me out for about a week. It played havoc with both my BP and my heart rate. I started to have tachycardia without standing, something that I had only had a few times in my life befor the TTT. I put it down to the fact that I hadn't been upright for 20mins for about 4 years. I hope that you feel better much sooner well done - sounds weird but you know what I mean! Rach

Hi, I maybe able to help with regards to the coffee helping you, due to my experience on other forums mainly to do with Myasthenia Gravis. Mestinon which some of us take helps people with low bp on keeping their BP elevated on standing. Caffine (coffee, tea, chocolate), Potatoes, Aubergines, Tomatoes all contain the chemical which due to brain fog I know begins with an A but I am bug***d if I can remember it! So acts the same way as mestinon on the BP. A lot of MG sufferers find they self medicate without realising when they are ill as their bodies naturally crave cola, coffee or Chocolate. Also on the forum I visit they advise if anyone is going for an SFEMG or EMG (nerve conduction studies) to avoid having the above mentioned foods, along with abstaining from smoking for at least 3 hours before (as nicotine also enhances the activity of the neuromuscular junction - due to the nicotinic receptors at the neuro muscular junction - why can I remember this and not the A word!!) as having these naturally occuring chemicals in the blood could affect the baseline. Many people with a clinical picture of MG have negative SFEMG's which leads them to not getting a diagnosis, even though their symptoms improve on mestinon. So perhaps this is why the coffee makes you feel better, especially after you have worked out? As it is keeping the A chemical at the neuro muscular junction or the ganglionic receptors? (think its acetocholine? some one please correct me if I am wrong) Sorry this post is a bit of a ramble, should have waited until my head was a bit clearer. The forum I use about MG is Neurotalk if you search there you will find a lot of posts about caffine etc. Rach

Hi, Have you been checked out for Polycsytic ovary syndrome? This causes insulin issues, hair growth on face etc, acne, weight gain etc. It maybe worth checking out. Also are you on steroids I was on prednisolone for a while a few years back and I grew a handsome blonde moustache on my top lip! And I sprouted a few hairs on my chin. They still haven't gone despite me being off steroids for 2 years. Rach

Hi, I don't know if this is the kind of pain you are talking about, but I get electric shock like pains inside my vagina. Usually when my back is bad. I informed my Dr and he just looked at me as if I was mad! I am lucky they aren't constant and the episodes are only a couple of times a year. The episodes can last hours or days and its just like every few minutes you are being electrocuted. It makes me yelp out with pain. You have my sympathy, I didn't even know this had a name and yet again I thought I was the only one! Thank you for being brave enough to post this. Rach

Hi, I had my TTT last week. I had known since November I was going to be having it so I stopped my cerazette contraceptive pill - I know that it controls some symptoms I dont have as many near fainting episodes. I also take Mestinon.....long story so I stopped taking that also. I take tramadol pretty regularly for joint / back pain so I limited its use also in the run up to my test. No Dr advised me to do any of this but over the last 4 years I have had so many tests where the results come out normal that I find myself planning for tests like I am cramming for an exam. The TTT was going to be the last test they ever performed on me as basically I am costing the NHS too much money and they couldn't find anything wrong. I am so glad I did stop the drugs as the results were pretty impressive and I was diagnosed on the spot. Do you have to fast for your TTT? I had to fast for 12 hours. I was only allowed clear fluids - however the hospital staff told me I shouldn't have even had water......shame their information pack didn't say that! I think you need to speak to someone who actually performs the ttt, if your meds raise your BP then how can it be an accurate test? Wishing you luck with the TTT Rach

Hi Issie,Have you ever been tested for myasthenia gravis or congenital myasthenia syndrome? I only ask as a friend of mine has a weird kind of MG and salbutamol (UK name) / albuterol really helps her, especially as one of her worst symptoms is shortness of breath. I also know other MG patients who take this to alleviate their symptoms. It just sounds odd that it helps you. I am not a Dr and in no way am suggesting that you have MG or CMS. Hi Julie, I am 37 so I know how you feel about the oxygen! Yes it helps and I should use it an awful lot more than I do. I also find that it gets rid of awful headaches that I presume are due to not enough oxygen getting to the brain. I never had any problems with breathing before I got sick in 2007. Up until that point I worked full time, ran the house and walked our three big dogs for 2-4 hours every day. I also had a very active social life, spent lots of time with my family and was up for a promotion at work. Then this happened. I think I have probably always had autonomic issues, but very mild. Always had a problem with feeling cold, excessive thirst and light heads / fainting and low body temp. But it was nothing that would prevent me from living my life. So I dont understand where the breathing problems come from and nor does the medical profession. FirewatcherThank you for that post. Very interesting. Nmorgan thanks for starting this post its nice to know we aren't alone. Thanks Rach

Hi, I have had oxygen de saturation problems for a couple of years now. As soon as I walk about, talk or even just get up from a seat my oxygen levels can plummet. I went to see a specialist who told me I was holding my breath! No word of a lie. I can promise you it isn't possible to hold your breath when chatting on the phone. Before seeing the specialist I had a hospital pulse ox taped to my finger for 24 hours to record what was happening. It dropped down to 84% regularly.I had to provide a diary of what I was doing during the day. Basically the only time I was over 97% was if I was laying down. The consultant dismissed me with the breath holding accusation ringing in my ears. Even though I dont have an answer for it I have been provided with oxygen to use at home. I find when I do anything upright one of my main symptoms other than my heart going nuts is extreme breathlessness. I feel like an elephant is sat on my chest. Ive had various tests done vital capacity, spirometry etc etc and no one can explain it. I figured it was just me. Its horribly reassuring to find out I'm not the only one who suffers with this. Maybe its a little known symptom of POTS and explains why we don't feel too good a lot of the time? Rach

Thank you for your kind replies xx

Hi, Ive had a reaction to this as well, mine lasted for about 7 days and was no where near as severe as yours. It took 7 days for the hives to go, swelling went in about 24 hours. My reaction started about 5 mins after they administered the dose, Ive had it a few times before and had absolutely no problems with it. However I seem to have strange reactions to drugs since becoming ill where as before I could take anything. I became short of breath and my lips/face swelled and then my face and neck became covered in hives and I was itching all over like crazy. My body temperature went up to 38 degrees C and the nurses in the ward couldn't care less, it took exactly 2 hours before I saw a Dr! I got given piriton to take 3 x a day for 5 days. I am now terrified that if I need a CT scan they will give me this drug again although I do know that its written all over my notes that I am allergic to it. If I ever go into hospital again I will take my own supply of piriton incase of allergic reactions. I hope you start to feel better soon, you aren't alone xxxx Rach

Hi, I have sent you a private message with details of who I saw and where I am based in the UK. If you go on the Dinet website rather than the forum they have a list of Drs all over the world that specialise in this area, there are a few based all over the UK. The most famous being Prof Mathias who is based in London. Rach

Hi, I read your post with tears streaming down my cheeks, its sounded like something that would happen in the 1800's not in modern medicine. Your treatment was horrific and you are so brave to have posted your experience here. I am at a loss for words when I want to tell you how I feel about your treatment. Rach

Hi, I just wanted to update you guys and let you know that I received my diagnosis of POTS yesterday. Its taken around a year to get my GP to refer me for a tilt table test. I asked for a referral to a UK specialist and many of you private messaged me with Drs names. However as usual, my GP believed that my symptoms were all in my head and did it on the cheap! I was referred to a guy at my local hospital who is a specialist in geriatric medicine......I'm 37 lol! The guy has a special interest in ME/CFS and POTS/ Autonomic Dysfunction. I first met him in November 2010 and to be honest didn't think much of him. My GP had reffered me to the wrong clinic and I saw him at the ME/CFS clinic, he spent the whole time trying to find out if I was depressed or anxious and if I had somatization disorder. So I then had to be referred again to correct clinic. I was very surprised yesterday to find that this consultant would be conducting the tests and he was actually quite nice. He has a very dead pan sense of humour and you have to listen closely to what he was saying so you knew he was joking and not being serious. He put me at my ease whilst they had a few technical problems with the equipment. I was tilted for 20 minutes and it was the longest 20mins of my life. I felt ill immediately on becoming upright and I felt like I couldn't breathe. About half way in I started wretching......not fun when strapped to a table! I didn't pass out but felt several times it was coming close. Thankfully I had to fast for 12 hours before the test so nothing in my stomach to come up but it felt awful. I haven't seen any reports although I have been promised I can have a print out, all I can tell you is what I heard him and the student discussing. My heart rate went to over 150bpm on standing, I know for periods of time it was 130/140 bpm. I dont know what my blood pressure did. What amazed the Dr most was how it so quickly went back to normal when I was laid flat again. In his words "Its one of the most dramatic things Ive ever seen" and he gave me the diagnosis there and then!His words were "young lady you have postural orthostatic tachycardia" - he calls me young lady as when he saw me it was a couple of days after my birthday and I told him I was feeling old and unimpressed with being 37! I was amazed as normally Drs wont discuss anything with you until they meet you in clinic 3-6 weeks later. He asked me what does it feel like, I told him on every movement other than laying flat it feels like my heart is going to come out of my chest. Hopefully this will pave the way for me to get a referral for a diagnosis of EDS as I score over 5 (think its about 7) on the beighton scale. Its taken 4 years to get this diagnosis and although I haven't experienced anything as bad as TeaRose's recent treatment - I urge anyone who hasn't read it to read it now, its been pretty horrific at times. I have persevered trying to get this diagnosis, even when told by my GP that POTS doesn't exist and its normal for your heart rate to go up when you stand up. I wouldn't have been able to do this without reading your messages that are posted on the forum or from the friends I have made on here. Special mention to Anna, who has been amazing when I chew her ear off on the phone! So Thank you my POTSY fiends xxxx Rach

Hi, I get what I call sparkles if I move my head quickly, when I have a low BP. To me its like seeing stars! I do get migraines but my migraine auras are completely different, they stay in the corner of my vision and are zig zag lines of blue green and red. The stars / sparkles are throughout my field of vision and only last a few seconds. My migraine aura will last from 15-60 mins until the pain kicks in. These days however I dont seem to get the auras with migraines.....but I am very lucky as when I was a teenager I had them several times a week. Now its only once or twice a year. Ive always seen floaters / bubbles in my vision even when I was a kid - I thought for a very long time that everyone had them! As I say I know I tend to get these stars if I am sat up straight or stood up so I associate them with low BP. I don't get them when I am laying down or in a recliner. Rach