Madwife

Hi guys! Well I am a complete insomniac during night hours which is why I work permanent nights at the moment to try and prevent complete bankruptcy from watching them shopping channels. Whether I'm at work or it is a night off I get very POTSY between 2-4am for some reason, whether this is anything to do with higher hormone levels at this time who knows! I have now been taking Amytriptiline for the past nine months at bedtime (be this day or night) and it has helped immensely with getting to sleep aswell as dramatically reducing the nerve pain I suffer as a result of the CFS/M.E. This is also a drug used for depression but I have now got to the point of thinking let them think what they want...if they have such little knowledge of our condition the likelihood is that they are going to assocaite it to some sort of psychological begginings no matter what medication we are on. The main thing is that we know and the doctors who count know why we are taking it...although I know this is not always the way it works in reality.

Hi everyone! I spent two weeks as an in-patient back in 2001 when I recieved my initial diagnosis of POTS / VVS / CFS / Seizures. I know this is a dreadful thing to say but I am so glad that everyone else diagnosed & treated here has experienced the same. I truly thought that I was the only one when I was discharged from London without any medication apart from Exeffor (Venlafaxine), told all the advice that you also all seemed to have been given and told I would recieve a six month follow up appointment...surprise surprise I never recieved one and have not been back to London since. Why does it seem that we always have to fight for such basic rights? Arrgh!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Hi there! Congratulations! I am a midwife with POTS / VVS / CFS / Seizures. What your midwife told you in relation to an epidural is correct...the drug used has a vasodilatory effect which is obviously going to provide a negative effect for you. If the hospital were willing to provide an epidural for you and it does drop BP they can give you Ephedrine but this is likely to leave you feeling lousey. You should not experience any other problems with analgesia such as Entonox, Meptid, Pethedine. The only other thing that I would advise is to make sure that your midwife is aware you should not undergo prolonged pushing as this is likely to stimulate an attack. Wishing you the best of luck x

Hi! When I collapse it tends to follow with a seizure of unknown diagnosis. However when I come round I lose all sensation on the left side of my body and am unable to control left leg and arm or place weight gain on them, this usually takes about 1-2hrs to subside.

Mine is because I am a midwife and we are all known to be mad hence the name madwife!!

Hi! I also have been talking Effexor ( Otherwise known as Venlafaxine) for 4 yrs now and if I am even an hour late in taking my dose I notice a big effect in relation to POTS symptoms. It also helps in stabilising mood as I too swing in and out of depressive periods. HOWEVER....be prepared to face even further discrimination though once a medical professional with no knowledege of the condition reads that you are taking an anti-depressant, as that will give them the confirmation they require to convince themselves that our condition is related to psychological / psychaitric issues. At the end of the day the majority of us are going to experience anxiety related symptoms...I'm sure they would aswell if they never knew how long they were going to remain standing and were grieving for the lives we all once had.

he he I'll come sounds great to me Poohbear...just need to find a way now to tolerate the flight over there! Maybe all the floors could be made of rubber so that when we all start falling down it would a least cushion our falls and bounce us right back on up!!! Hmm...think I'm dreamin now!

quote=Radha,Jul 7 2005, 05:45 AM] do any of you get even more hyper and jumpy when you get less and less sleep? it seems my body speeds up inside the more sleep deprived i get, instead of getting more tired and slower and the less i sleep the more my mind races with thoughts, even more than usual that is. i think i get more and more exhausted and it gets even harder to relax to fall asleep, any advice would be appreciated, wish you all a goodnight, radha <{POST_SNAPBACK}> I know exactly what you mean Radha I am exactly the same when it comes to bed time. I also find that with the M.E I suffer from increased muscle twitching and spasm at this time. I was prescribed a 25mg dose of Amytriptiline and this has helped to a degree much more so than anything else. As for the mind racing I find you need to get into a regular relaxation technique. Put some relaxing music on quietly in the background especially specified relaxation tapes with rythmic waves and such. Lie on the bed and gradually, working from head to toe, work through relaxing and tensing each muscle i.e. clench hands into tight fists and hold for 5 seconds and then gradually release over the next 5 seconds. Try to clear your mind and concentrate on the music and hopefully it will just help in relaxing you enough to drift. It's certainly worth a try anyway and is especially good for the less mobile of us in order to maintain muscle function and to help decrease blood pooling prior to sleep. Wishing you a restful night

<{POST_SNAPBACK}> I believe my POTS was caused through the herpes virus (COLD SORES) that remained dormant in my system but following a Motorway car crash was knocked out of it's dormancy and began to attack my ANS. Either that or it was a direct result of the car crash???!!!!

Hi Roselover, How refreshing to hear of some Doctors that actually wanted to listen! Anyway just wanted to let you know that you are more than welcome to have a copy of the booklet that I had to produce regarding my illness which consists of P.O.T.S / V.V.S / M.E and Seizures. I am a senior midwife and face a lot of hassle at work due to my illness and was forced by the occupational health dept to provide information for my colleagues. I therefore produced a little booklet containing information about the various conditions and their effects. The booklet also contains peer reviewed research articles that tend to go down better with the Doctors. However obviously as a health professional I have written it using medical terminlogy so parts may be a bit confusing but at least gains a bit more respect when you hand it to a Doc. Get in touch if you think it may be of any help. Take care

Katherine I agree 100%. I am a health professional but I still get treated like an absolute nutcase when treated by fellow colleagues whom show me respect within my working environment but think my condition is psychological. So what am I a competent health professional and part time nutcase on the verge on a nervous breakdown, who therefore decided to make up a few things regarding my health and fall on the floor a few times just to impress them???? Who's the nutcases...personally I think it's some of my fellow colleagues the Doctor's. Although I am a bit of a nutter I have to admit! I'm sure we have all experienced this at some point through our illness but does anyone else find it really frustrating that those Doctor's without any true knowledge of the condition automatically assume it must be anxiety or depression related?