helen.t

Hi Just want to say that I know how you feel but don't know if I can offer much advice. I can't work anymore because of my health probs and it gets me really frustrated, but sometimes there is a peace in acceptance that your body just isn't able to do the 'normal' things anymore. Maybe pursuing the disability road is the way to go. It was for me, and although I still don't like it very much but I know I have no choice. It is good if you get an understanding doctor on your side for that. Anyway, good luck and hope you get some help for you situation!! hugs, helen

Hi thanks for your replys! It was the radiology dept that I spoke to and they got someone to call me back who they said would know more but I'm not very convinced she did. I get my Midodrine sent up from UCLH, London but not sure whether I should speak to them or my Cardiologist here in Glasgow who referred me for the scan under recomendation from Prof. Mathias at UCLH. I find it so stressful and I just don't want to appear an idiot for making a fuss if I don't need to. The Consultant here didn't mention anything about not taking the Midodrine. Anyway I will pluck up courage to call someone, probably the Cardio Cons. Thanks again for all your support and I will let you know how I get on. LoL Helen

Hi, I am getting a Coronary CT Angiography scan next week and I'm not sure if I should take my dose of Midodrine on that morning. I have also to take some Atenolol for a few days before the scan to open up the arteries so it will make the scan easier. The reason I ask is that Midodrine is supposed to constrict the arteries and so will it not be reversing the job of the Atenolol? I called the hospital to ask and the nurse said just to take it but I didn't get the impression that she really knew anything about Midodrine or it's purpose even though I tried hard to explain. Does anybody know if Midodrine will affect the results of the scan? Any advice or help would be great! I just don't want to make things more difficult on the day although I would miss not taking the Midodrine as well since it helps me with traveling. I'm in a dilemna.... Thanks again. Helen

Hi, thought I would chime in again. It is Omneprazole that I am on and it works fairly good for me. My fatigue increases dramatically when I have a flare up of acid reflux which I can still get even on the meds but is due to food intolerances. I get severe heartburn which for me is the worst pain to deal with out of all the other pain I get. I suffer from much bowel pain; muscle pain; migraine and all sorts of other severe pain but the stomach acid thing really tops the lot for me as it is very bad. Hope the med helps with you, even if it helps some things to improve then that will be good. LoL Helen

hi, Thanks Flop, yeah, my hands are very thin and my Dr told me many years ago that I had a lot of muscle wasteage in my hands and wrists so maybe that doesn't help with pain and swollen veins. Also my BP tends to be on the high side especially when I've had to wait for a while to see the doctor which won't help the cuff inflation thing. Sometimes I feel as if my veins are going to burst, it is horrible. Helen

Hi Sorry you had such a bad Doc experience!! Had many myself so can relate well. I think it would be good idea to try the stomach meds as I have chronic acid reflux and when it is bad causes my fatigue to be so much worse. When my stomach/bowel is happier then my other symptoms are easier to cope with. When my stomach is in a bad way which is often, then I'm in a very bad way!!! Good luck Helen

I have swollen veins in my hands a lot too especially in the heat and when I get my blood pressure taken the pain in the veins in my hands and arms can be horrendous. Sometimes I think that makes my BP go up so much at times. Could this be right and does anyone else suffer from this pain when getting BP taken? Helen

Hi, My heartrate is definately a lot slower on Midodrine and my bp stays low lying down but it can be still quite high when up and about especially if I have to sit up for any length of time. I get funny unpleasant feelings in my head if I lie down after a dose of it as well as my body being very jerky and unsettled. I have to decide in advance if I can keep going to take my afternoon dose or miss it and have a lie down so that I can function better later on. I suffer from migraines a lot and sometimes I have not long taken my midodrine then need a lie down... very frustrating to get it right! Sometimes the slowed heartrate gives me feelings of missing a beat which can be quite unpleasant at times but I still feel better on midodrine than not. Helen

Hi, I think doctors always err on the cautious side when it comes to heart attack/ stroke symptoms and since atonomic dysfunction gives these exact symptoms a lot of the time then it can be confusing and very alarming for both patient and doctor. I think when the tests come back ok then we can be reassured that nothing really bad is going to happen even though it feels the opposite at the time of experiencing them. I feel as if I'm about to die quite often and it is very disturbing so I know how you feel when you think something might be getting missed. The fact that I have survived huge swings in BP and tachy, assures me that my heart is very strong but I'm not so certain about my blood vessels. I hope whatever tests you get in the future will help you understand more of what is going on with your body and that you will get some meds to help. I think very slow graduated exercise is best with people having to cope with this illness as our bodies react different day by day and even hour by hour depending on the environment around us, food and all sorts of other stressors which we might not be aware of. Take care and hugs Helen

hi there, I know my bp drops quite a lot imediately following exercise but I'm not sure about during it. I think it's ok but I do get a lot of chest pain and angina like pain during exercise as well as just sitting up and standing. My bp is usually elevated after sitting for a while then standing but then drops. I don't know how my bp works either because it goes up quite high but can also be quite low and I'm symptomatic with both. Also the tachy and heartbeat varies a lot as well. I have POTS but doctors not sure whether all my symptoms are all POTS related and although I've had a lot of heart tests done already, I have to get a CT angiogram to rule out any vascular probs. around my heart. Sorry I can't be of much help but I suppose if you eliminate all other possible causes then your mind will be at rest that it is autonomic dysfunction. Helen

Hi There, I was put on a Gluten free diet 4yrs ago when I discovered I had Coeliac Disease after many, many years of ill health, low immune system and very bad chronic Bowel/Stomach symptoms. Everything was put down to Irritable bowel, CFS and anxiety for over 26yrs. Unfortunatetly my body took a long time to adjust to the Gluten free diet and my symptoms of Dysautonomia became much worse, although I did not know what was wrong with me at that time. I ended up very ill in A and E with SVT symptoms which doctors couldn't figure out what was wrong and told me I was too focused on my diet!!??!...Ahrrr... I have since been diagnosed with POTS; Lactose intolerance; Periph. Vestibular impairment and Migraine related vertigo. Postural vertigo was diagnosed about 6yrs ago. The main point is that I still have problems with my bowel/stomach even on my diet and I put this down to having Dysautonomia/IBS. I think it is best to be advised medically to go on this type of diet and if you are concerned that food can be making your symtoms worse, it would be best to get tested properly before going on it as it may just cause confusion with your symptoms in the long run. Also a lot of Gluten free food has a lot of sugar in it which I think can aggravate Dysaut. symp. I hope this is helpful. Helen

Hi, This thread has been so helpful to me too!! I am such a people pleaser, it makes me ill as I hate letting folk down and feel guilty if i'm not up to an outing or having friends over when they need suport or I've made a commitment of some sort. The trouble is like you, I have a number of really nice friends but are really needy people themselves and it's too much. I love the suggestions that have been put forward by Kristen, I will definately be trying them out as I'm getting very worn out even by some people who are killing me with their kindness as they think I need a bit of company!?! Sometimes I wish I were on a desert island to get away!!!!.... LoL helen

Hi Folks, Yes I identify with all that has been said already on this post. I find the pressure to be well almost unbearable at times especially when you are struggling just to keep upright, never mind carry on a conversation or try explaining how you feel! And yes, I get told relentlessly of 'HOW GOOD' or 'WELL' I am 'LOOKING', which just rubs salt into the gaping wound which is invisible to others most of the time unless they see me losing my balance or walking strangely or getting one of my frequent dizzy spells when I turn my head slightly. My husband too, although usually understanding can make me feel guilty also as my illness holds us back from doing stuff we would normally enjoy together. I know it's not intentional and more out of frustration but it still makes me feel bad. This forum however has been a Godsend to me as it has helped him realise how I am through what others are going through and he reads the posts more often than me because the computer brings on my migraines big time. It has helped him take more interest and he has even forwarded on some You Tube Videos on POTS to friends who have shown an interest but even at that people still think you just have something that can get better in a few weeks. I even had a Homoeopathic Doctor tell me How Good, Well and Young I looked, and didn't look like I had been ravaged with ill heath for over 26 years. I responded by saying I wished I could swap places with his body for a few hours so that he might have an idea of what I was suffering continually, the only thing is, I woudn't want to swap mine back if it were possible!!!...ha ha! I am interested in anybody's ways of coping with others as it's difficult enough coming to terms with and accepting chronic illness yourself without having to deal with other people's unacceptance of it and I wish I could deal with it better myself. Everyone here has my best wishes and empathy! Take care all you guys. Lol Helen

Hi Thanks everybody for your reply's. Yes like you say, I don't really want another diagnosis but if it explains a lot of what is happening in my body then it might help me to deal with it. All your info has been helpful and I will look into it more as a lot of EDS seems make sense withsome of my symptoms. Can it get worse through time? Thanks a million for all your support!! Nobody wants to be here really but it is good to know you're not struggling alone and having people who understand what it's like living with Dysautonomia has helped me keep my sanity!! Thanks again, Helen x

Hi folks, I know that a lot of people here have EDS and that it can be associated with POTS. I have POTS but not EDS as far as I know but I do suffer a lot from joint pain at the top of my legs and pelvic floor muscles and also knees, back and ankles. Also my muscles are easily pulled out and I suffer from a lot of severe muscular pain and spasms at times. I was wondering if EDS affects muscles and ligaments? I am generally quite stiff and slow and not double jointed but just wanted to know if loose muscles/ligaments had anything to do with EDS. Thanks, Helen

I don't know about brain fog..... I used to get brain fog but now I feel that it is more like brain dead!!... I cannot think fast and never have been able to but I have been much worse over recent years and cannot think at all at times and feel like my head is seizing up. I was worried too about the impact of lack of circulation to the brain but I don't have any answers here either. Lying down helps, the only trouble is as soon as I get up, I'm almost just as bad. I suffer very bad migraines and recently been told that even when I don't have pain of migraine, I'm still having one so I don't know if this is making it worse for me. Sorry I can't help much but you do have my sympathy and understanding. Hope you get something to help!! LoL Helen x

Hi there, No I've not been to see her but I'm very interested in finding out more about her! Where are you in the UK? I live in Glasgow Scotland and have to go to London to see Prof. Mathias who specialises in autonomic problems so I would be interested in someone a bit closer to me. Have you got an appointment to see her and how much traveling will it involve for you? I hope you get some answers!! Sorry I can't be of much help myself. You could always call the hospital and ask to speak to her secretary to get more information. I just thought of that! helen x

Hi, Thanks for your reply!! How long did you stay on the drug and what dose were you taking? I appreciate your negativity as my body has difficulty with drugs too and I find it hard to be positive when trying something new espscially when it seems a bit strong. I am interested in how migraine affects you and if you have had any other help since this didn't work for you? I notice you have autonomic neuropathy. How does that affect you and what are your symptoms? Thanks Helen

Hi there, The best thing that helps me is either anti histamine meds or diazepam for short term relief. Beta-Blockers seemed to intensify the problem for me. My racing heart probs have been helped by regular doses of Midodrine and I noticed when I was in hospital for tests recently that when I had to stop the Midodrine, the racing heart thing was a lot worse. I hope this helps you! Helen x

Hi Folks, Sorry to confuse you about the drug name but it is called Sodium Valproate. I just wondered if anyone else had been put on it for migraine prevention and if it had been a good success. I'm not too good with meds and when I took my letter to my GP with the prescribed dose recommended, she nearly fell off her seat. She has began me with a small fraction of what I'm supposed to be on and hopefully it will agree with me so it can be increased. So far Ive not been too bad although I'm having some very weird and colourful dreams! Anyway hope all you guys are doing ok and thanks for your interest!! Lol helen

Hi there, I'm just back from my visit to Prof. M for my round of autonomic testing. I have been three times now but most of the pre-planned tilt tests that Flop spoke of and which I had in the past were cancelled this time as they decided to do different tests and coudn't fit it all in. I think you will probably get the routine autonomic tests to begin with (the ones Flop spoke of) to assess if you need to get something else. They take a full medical history but I have found that the doctors that examine you in the ward tend to be very busy so try to be prepared with what your main problems are. I find this part of the visit very difficult as I have so much going on that I'm not sure which is relevant, also I'm not good at answering questions quickly when under pressure. I also have a habit of saying that I don't have specific problems when I do because I have forgotten about them. Take plenty loose clothing and joggy bottoms for day time and a pair of shoe- type slippers. Also if you feel the cold like I do, a nice warm cardigan, as it can be cold in the testing rooms. All the staff are lovely and I would give as much information as you can to the autonomic specialists when you get your tilts especially on your 1st day, as they discuss the outcome with the Prof before he sees you on the Tues. He is really nice too and puts you at ease. If you can have a relative/friend with you at that time, it helps. I say this because I usually forget half of what is said and also he sometimes asks questions to the other person with you. He usually comes around 12noon on the Tuesday, just in the middle of you having your lunch and having your 24hr BP monitor on. At least that has been my experience. I wish you well, they really do try to do everything they can to help your individual situation. Lol Helen x

Hi Folks, I have just had my yearly visit with my Autonomic Specialist assessing my POTS and my declining health situation, and he has recommended commencing preventative treatment for my chronic migraines with a drug called Epilim which is mainly used for epilepsy but has been shown to be effective in treating migraine. I just wondered if there was anyone here who has been put on this drug for the same reason and how effective it was for you. I would appreciate any info regarding this. Lol Helen

Hi Amy, I don't have any great answers to your problem other than I have shared your experience with fluctuations of very high and low blood pressure as well as very fast and slow heart rate. It has had spells of being much worse when I'm ill with something else and I think it is because our bodies do not work in the way they should and so when you get something in addition it causes mayhem. I wasn't given any treatment for my POTS initially due to the variations in my blood pressure as they were worried that it might exacerbate the problem. However I am on Midodrine now which seems to be ok. I think you may just have to take it easy for a while until your body settles down and considering the severity of your illness it may take a while. my advice is to try not worry about it and go slow with taking up your meds again. Let your body tell you what it needs and keep up fluid and salt intake as well as good protein foods. I hope things settle down for you soon. It is a horrible situation to be in. I've been there and still am there to a degree myself. Take care with lots of hugs, Helen

Hi, I sympathise with you. It is a horrible feeling. Deep Breathing exercices have helped me with this and I also take a mild tranquiliser or anti-histamine which helps the relaxation and slows down the tachy / restlessness. I also do some relaxation techniques which involves repeating a phrase over and over in your head such as: 'My left leg is very relaxed and comfortable' - repeat 3 x and then go on to right leg, arms and other body parts until you should eventually fall asleep. Emphasising a different word in the phrase each time you repeat it, will help relax your mind as well as body but it is important to keep to the same phrase. It is good to practise this when you are feeling better too so that it becomes easier to do at the times you really need it. I do hope this helps! Helen

The only thing i can think of is taking a vacuum flask filled with ice and water and a couple of wet wipes which you could pour some of the cool water and bathe your head and arms withit occassionally. Wearing cotton and having layers that you can take off and on. This has helped me a little, especially with migraines as my head can suddenly feel like it is on fire. I hope it might help you!!! Helen