rach73

Thank you. I know there is something iffy going on with the blood supply in my head! Thanks so much for posting! Rach

http://www.meactionuk.org.uk/Wessely_John_Maddox_Award.htm Simon Wessely in the UK has said for many years that CFS / ME is a somatiform disorder. This article shows why his research is flawed along with his opinion - despite recieving an award!!! Interesting as it talks about CNS dysfunction in patients with CFS / ME Rach

Hi, I suffer terribly from this its called post prandial hypotension. Its usually seen in the elderly however I now know that Ive had it certainly from the age of 14 onwards. I really used to struggle to stay awake after eating lunch at school, then university. It was a nightmare when I had to attend the lecture theatre as they would turn thelights down and have a spotlight on the speaker. On more than one occasion I interrupted the speaker with my gentle snores! I never knew what it was until I got diagnosed with POTS and started trying to find out more. Some websites suggest taking ibuprofen before a meal, my consultant says that works too slowly. Hes asked me to try very strong coffee or tea whilst having my meal and after the meal. Some days it works some days I just fall asleep. I no longe have much of an appetite due to intermittent gastroparesis. I rarely eat breakfast, if I do I am asleep for an hour or so afterwards then lunch will do the same. Its not a nice sleep its more of a combination of sleep and a blackout. My BP will drop into the low 70's and my eyes roll in my head. When I come around from this I am extremely groggy and it takes a good 90 minutes before I feel normal again. Its so incapacitating as I can not do anything other than go to sleep and its getting worse. Rach

Hi Jangle, yes it stopped the pre syncope coming on - what I mean is it still came on but I got to stand up for longer (just minutes) without feeling weird. Unfortunately the fatigue has become too much for me to handle its much more than I normally feel, this was bone crushing fatigue that was just wiping me out. So Ive stopped taking it for the time being. Just waiting to hear from my consultant now as I rang him this morning. Rach

Hi I am on ivabradine Ive been on it a little while now. I take 2.5mg three times a day (started on 2.5mg twice a day.) Pros - No more chest pain not feeling like my heart is going to come out of my chest on moving ( I have quite bad pots and any change in position will do it) I can also stand for longer without feeling like Im going to pass out. Cons Post prandial hypotension worse Blood pressure low causing excessive fatigue On occasion dropping my heart rate below 60 bpm My sister who also has pots and eds is on this drug and has noticed a massive difference in her symptoms and no side effects. Ive currently stopped taking it for a few days as the fatigue has been over whelming, I have to have a nap in the afternoon for three hours to be able to function in the evening. I think its one of those drugs that works for some and not for others. My consultants concern before starting this medication was that my blood pressure would fall due to the lowered pulse. It looks like he was right. Which is a real shame and I am jealous of my sister! lol Rach

thanks for that Anna .

Hi, I use salt tablets, without them my bp drops between 10-20 points and I black out daily. Although my health is still rubbish salt tablets mean I can get out of bed and get down stairs safely and get more involved in life. I did try florinef but it gave me headaches and migraines, I tried midodrine but that stopped me urinating and gave me gastric distress - a real bummer as midodrine made a massive difference but I would end up being bed bound again from the pain from my abdomen or bladder. Good luck with the salt tablets to me they have made a massive difference. Rach

Hiya, yes this is familiar. I suffer terribly with post prandial hypotension (low bp after eating) its due to blood pooling around your intestines for the body to digest your meals. It doesn't matter what I eat / when I eat I crash. My eyes literally roll in my head I can not keep them open and I yawn like crazy. My bp can drop to 72/40 from eating. Ive tried eating protien rather than carbs, smaller meals, caffiene with meals, ibuprofen with meals. Nothing works. Even taking midodrine had no effect. Midodrine causes blood to pool in your belly anyway hence why you get cold hands and feet so it could possibly make the post prandial hypotension worse. Like you it wipes me out for hours on each occasion, the symptoms can start within minutes of eating or up to an hour after - depending on how well my stomach is working! The symptoms on a bad day can last for 4 hours or more, 2 hours on a good day. The usual give away for me is the tachycardia, then my eyes bounce around in my head. All I can do is lie down until it passes. If I have to do something in the afternoon I will skip lunch as if I eat I wont be able to function. Sorry I dont have any advice for you, I just wanted to let you know you arent alone. Rach

Hiya Anna, I had a hiatus hernia diagnosed by endscopy in 2002. The problem I have is reflux I have no pain from the hernia itself, in 2002 it was measured at 4cm. The reflux is getting worse as I wake up at night choking on a mouthful of vomit. Part of that is my fault as I never take lanzoprozole regularly I only take it when I have reflux. So I know I am naughty! Rach

Im like Issie I cant take the shots with epinephrine in them. In 2003 before I got really sick I had an abscess in the root of my tooth. The dentist couldn't understand why after 11 injections I could still feel the drill. I also had part of my toe nail removed in 2009 and 5 mins into the procedure I told the dr I could feel the scissors cutting down the side of the nail. He told me I couldnt possibly feel it - I could. I fainted after the 11 injections at the dentist and spent three days in bed. I now ensure I have the shots without epinephrine as it stops me getting tachy or fainting. Novocaine not working is a sign of EDS. I am lucky in the fact they do work very quickly but I burn through the dose at light speed. My dentist now works at the speed of light with another syringe of local at the ready as soon as I start to feel anything. I too couldnt answer the poll in the way the questions are structured. Rach

Hi Ceindeg, Im from the UK also Im based in Devon. There are some great websites with infor for the UK on them. http://www.stars.org.uk/ http://potspalsuk.weebly.com/index.html Theres also several groups on facebook https://www.facebook.com/#!/groups/187035344689816/ Pots Pals UK https://www.facebook.com/#!/groups/100151823459600/ UK Potsies You can ask questions on the facebook pages and people will let you know if they have seen the cardiologist that you will be visiting. Professor Mathias is the top guy in the UK but the NHS waiting list is 9-12 months to see him privately its £350 without any tests on top of that. I am seen at my local hospital by a geriatrics (Im 38!) and general medicine specialist who has an interest in POTS and is seeing many people in an unofficial POTS clinic. He is friends with Prof Mathias. I know Anna who posts on here knows of a Dr in Bristol whos good with POTS stuff but I can not remember his name! I hope this helps Rach x

Hi, My consultant believes for sure there is a genetic componant to some types of POTS. He treats me and my sister, we both have POTS and EDS, my father has EDS and low blood pressure, My mother hasnt been diagnosed with EDS but we are pretty sure she has it and I believe she has hyper pots as she has high blood pressure and fainting episodes. Ive tried doing a poor mans ttt on my mother but she just naturally wriggles too much! lol My consultant also sees another members family on here. I will let her tell you about her family if she comes onto the forum. The consultant we see wants to do a genetic study on our families to see if they can identify the faulty gene. I believe he is awaiting funding for this study. So yes I believe there is a genetic componant in all of this. Ive just remembered, My mothers grandmother took to her bed after the birth of her last child. No one knew what was wrong with her it would have been late 1930's Im guessing when it happened - perhaps her condition was POTS triggered by pregnancy? We will never know. As the drs at the time (which would have been expensive as no insurance or national health service) could find nothing physically wrong with her it was decided it was all in her head. I dont think the family were very sympathetic as then the drs word was final. I feel lucky that medicine has advanced! Rach

thank you. I have emailed this to my consultant. Rach x

Thanks Joe for letting us know how you are doing. I hope the lower dose works for you. Rach

sorry forgot to say you need to avoid them as midodrine can elevate your blood pressure when supine so taking the cold remedies on top of that could elevate it even more. Rach

Hiya, the medications to avoid are things like cold remedies so in the UK its things like Lempsip and beechams powders. Also things like sudafed for nasal cogestion. Both these types of over the counter medications contain an ingredient which elevates your blood pressure , its called pseudoephedrine so basically you need to avoid OTC medications with this ingredient. other ingredients to avoid Phenylephrine (hydrochloride). Hope this helps Rach

Hi, Sorry that you have both kids sick with this. My mum has the same issue both my sister and I have it but we are considerably older. Ive fainted twice sitting down. Once was at school during a biology lesson and we were cutting up a pigs head (Ive been a life long vegetarian so I think that explains it!) was sat on a stool at the bench woke up on my back on the floor. The second occasion was last year I was actually lying on my bed propped up by pillows I had recently eaten my dinner, felt my bp dropping as I get post prandial hypotension and the next thing I knew 20 mins had gone by (knew this as I was watching a dvd!). With this one I woke up extremely confused and around 5 mins later took my bp and it was 75/42. That one scared me as I had been out cold for so long. My only advice would be if she feels faint sitting down, lie down as quickly as possible and elevate her legs. Im really sorry I cant help anymore. It must be terrifying for you. Rach

Hi Clair, Im still out of it! I would keep a log as you are doing but when you go to the appointment just take the last five days worth of charts plus any which show really massive HR increases (but a max of 3). You dont want to get completely bogged down in your tables and not be able to discuss everything you want. Provide photocopies of the charts for the dr to keep that way he / she can look at them properly ion their own time. My POTS consultant loves it when I provide copies of info for them even basic things like my most up to date prescription list - Im lucky my drs surgery has the facility to order on line so I can print off an up to date list. Dont worry about being seen as a hyperchondriac as most Drs who have knowledge about POTS know that most of us have been written off by drs saying its anxiety or all in our heads long before we get to them. I have lost count of how many consultants, registrars, jnr drs, gps I have seen who were out of their depth and had no clue what was wrong and were comfortable to tell me it was all in my head - just because they lacked the knowledge!! If I hadn't found DINET I still would be without a diagnosis and I still would have never heard about EDS. It was only when I saw the symptoms list and read the posts o the forum I knew what was wrong with me. It took a year for me to convince the drs to do the TTT. So dont give up keep doing what you are doing and you will get to the bottom of this! Rach x

Hi Clair, yep thats blood pooling you can see my gross feet here http://themyastheniakid.blogspot.co.uk/2011/05/blood-pooling.html it aint pretty! I really hate my feet! lol! I really laughed when I read you had a table too! OMG we are peas in a pod! Keep a diary like you are doing noting your symptoms. My blood pressure rises initially on standing and my pulse goes mental then my BP drops a little but pulse still stays high. But I am also at the point where even rolling over in bed elevates my pulse, even turning my head can do it so I feel horribly potsy all day everyday. Some people do find they have POTS attacks and arent potsy all the time maybe you fit into that category? I dont know to be honest my head is all over the place today! so shouldnt have even started this post! Rach x

www.mysquirrelbait.com Brain Scans Detect Fibromyalgia. Finally a physical finding to say that fibromyalgia is a disease that's not pschosomatic Thought those of you with Fibro would find this interesting. It came up on a chronic pain thread on facebook. Dont know how to make it so you can hit the link and go to the page though sorry. Rach

Hiya, I ended up getting my own BP monitor too and so did my sister. It was the only way I could prove to the drs that I had a low bp as unfortunately due to so many negative experiences with Drs every time I had my BP taken the stress would make it rise up into the normal range of 110/60 ! Keep a track of every BP measure plus time of day and any symptoms you are experiencing, I made myself a little chart on the computer! LOL! Keep us informed on how you are getting on Rach x

Hiya Clair, Glad to help. I think the criteria for POTS is 120bpm or a rise of 30bpm on standing - however its in ten minutes of standing and some Drs will still call it POTS if it takes up to 20 mins for your to reach it. I love the fact your "sympathetic " gp just said exactly the same to you as I had said to me. I was told by my old gp and my pots consultant that after my TTT I wouldnt be referred for any more tests and they would have to consider somatization disorder. Obviously my POTS consultant had read my notes and seen all the rubbish my neuro and his team wrote about me and my family (Ive seen some not all and the bits I did see where psycologically damaging due to the sheer number of lies and inaccuracies!). I produced a five day chart to my POTS consultant showing my sustained low blood pressure and elevated heart rate and he decided there and then that I needed more tests but with the if this doesnt show anything its somatization. (still angry at that). After my TTT POTS Dr came back in took one look and told me there and then it was POTS. He was blown away how all my vitals returned to normal after lying flat. I just turned around and said Ive been telling you all this for a year!!! Have you tried doing the TTT at home for as long as you can stand without wriggling - because thats the hard part as your body will naturally try and get you to move! The syncope clinic sounds like the right place. My dr is general medicine and geriatrics! with an interest in POTS. Keep fighting hun it will be worth it in the end. Rach

Hi the group on facebook is Pots pals UK

Hi Clairc Im in the UK as well hun and know what its like to repeatedly bang your head against a wall trying to get answers. My sister was diagnosed with M.E over 20 years ago - shes never had it, she has EDS and POTS, however she only got her diagnosis after I was diagnosed last year. ME is treated as a mental illness in her health authority so to get anything done she has to come to my health authority. So yeah its a battle! You can request copies of your notes I did it as I knew there was something fishy going on - I tried for 4 years to get diagnosed and knew I was being labeled with somatization disorder. They can and do charge for copies of your notes, the maximum here is £50. I asked for all my notes from my neurologist - funnily enough I never received any of his notes just everyones elses and he treated me for two years - really he had nothing to say for 24 months (voice dripping with sarcasm!) . In the UK they can withold some of your notes if they believe it can do you psychological damage. I also contacted my GP and asked for all my blood test results - they told me they were normal, a lot of them weren't. So you can do it just dont expect to get all of them. I ended up changing GPs as the old one said EDS was too rare for me to have......6 months later diagnosed within 10 minutes of seeing the rhuematologist. I was diagnosed with POTS whilst moving GP surgeries - my old GP told me it was normal to go from 80bpm - 170bpm on standing and that my low blood pressure was super healthy 80/40 is not a healthy BP as we know! I would suggest you have a look at the POTS UK site they have a GP handout that you can print off. Also as others have said your TTT was done incorrectly -( I also use a wheel chair and there was no problem with me having the test) should have been done fasting no fluids and no food for at least 12 hours before. I actually threw up during my ttt poor nurse had to catch it for me as my arms were strapped down. Also the POTS UK site would be able to recommend drs in the UK that other members see. We are also on facebook and just like this forum people are always willing to answer your questions. I hope this helps Rach x

Hi Katie, Thanks for your advice hun. I see my POTS dr soon so will ask him as I really dont want to get migraines this frequently the last one had me in bed for a day and my POTS was awful every time I so much as moved. Just want to be able to support my husband and I cant do that if I am incapacitated more than usual. Thank you Rach