ben_uk

Thanks for your replies. Last night I had it whilst lying down. The pressure is so great I think I am going to have a stroke or something. I don't think a lot of doctors understand. Guess I will have to live with it, along with all the other weird symtpoms! Thanks again, Ben

Hi all Sometimes I have this intense pressure in my head like the blood pressure is going really high and it feels like it is going to burst. It doesn't happen very often - only when I am generally symptomatic. Any advice would be appreciated Thanks Ben

Hi Vanessa I am pleased you have been accepted, even if there is a wait. I know how difficult it is to wait - I had to wait several months to see my Dr (initially I was refused because they didn't think I had autonomic problems). Maybe you could call them and ask to be put on the cancellation list (if someone else cancels you may get ahead). Take care, Ben

Hi, I cannot tolerate vigorous exercise (I can get very short of breath and my HR goes crazy and takes ages to come back down). Sometimes I can manage a medium paced 25 minute walk, and other times only a slow walk. This is very fustrating. I was actually doing Pilates for a year before I became ill and Yoga for 6 months beforehand as well. I do a combination of Pilates and Yoga (at home) for about 20 minutes daily and a longer session at the weekend. I have to be careful as a few moves made me feel worse, but generally, if I am gentle, it helps. If I do too much it can backfire. If you do decide to do Yoga or Pilates, make sure you find a good instructor and if you can afford it, go for one-on-one lessions. You shouldn't need too many -- he/she can teach you the moves and you go away and practice them. My advice is...take things slowly and gently and build up your endurance. Good luck! Ben

Wishing your father a quick and complete recovery and wishing you the best of luck for your forthcoming appointments. Let us know how you get on. Best wishes, Ben

Thanks everyone. One of the problems I have is that on weekends I sleep so much. At the end of the week, I am so exhausted that I can sleep for 12 hours straight and that must dehydrate me a little! I really need the sleep though. But one thing I do now is drink some peppermint tea when I go to bed, so that at least hydrates me a little. I need to read up on the himalayan salt, etc.. - it is all new to me. By the way - I seem to be one of the only males on this website! I am starting to think I am a rare case! Have a good night everyone. Ben

Thanks for your responses. I guess I need to drink more! Also, I didn't know about the need to take electrolyte - I assume this is because too much water can dilute minerals in the body? Thanks again Ben

Hi! I was told by my doctor to add salt to my diet and and drink lots of fluids. But I forgot to ask how much. I think I am drinking about 1.5 litres a day (maybe a little more). I keep forgetting to drink throughout the day and know this is not good. If you could let me know it would be appreciated. PS - I get results from my tests next week. I will keep you posted, but it is looking like I have POTS as well as low blood pressure. I had an autonomic exercise test and the technician said the observations were consistent with POTS (tilt table did not show up POTS). There was also a blood pressure drop and I need the doctor to interpret these results. Thanks in advance, and wishing all of you well. Ben

Hi, I have used meditation over the past year or so. I use mantra meditation and I do it lying down. I do it for about 25 minutes. It does relax me but the effects are not long lasting (although if I did it regularly - which I don't - i believe it has a cumulative effect. Ben

Hi Vanessa I think you are being too hard on yourself. We all make mistakes and I am sure that it must be very hard to quit what is clearly an addition. People all around us eat unhealthy foods, don't do enough exercise and do other things they should not. What you have demonstrated is merely human nature. I don't know much about different ways of quitting but I know some people who have used hypnosis, with varying results. Whatever you do, don't expect too much of yourself. Yes, it would be great to quit right away, but maybe a gradual approach is better and more sustainable? Just a thought. I wish you all good wishes Ben

Wishing Valerie a speedy and complete recovery, Ben Oops, I just read your reply Valerie (after posting a good luck for your operation message!)

Hi I don't want to put anyone off accupuncture because it does help many people. However, for me, it was a complete disaster. My autonomic symptoms started during and after an acupuncture treatment. I believe it was just the trigger to an already existent underlying problem, but my advice would always be to be cautious. If you want to see someone, go to an experienced practitioner and tell him to go easy for the first few sessions. Again, I don't want to put anyone off as maybe I am an atypical case. In fact, I have heard of it helping people with dysautonomia. It is meant to be good for fatigue, disgestive problems and more. Take care Ben

Hi Julie I am sorry to hear what you are going through. I also feel like my nervous system is way overexcited. Anything calming is likely to be of benefit, such as meditation, or yoga breathing exercises. A good one is the Corpse pose, where you lie on the floor, close your eyes and just breath abdominally for 20 minutes imagining all the muscles (one by one) relaxing. Hope today is a better day. Happy Christmas Ben

I am pleased you will be taking things slowly. If you find it hard to get into the university, keep trying and pushing for it (or a viable alternative). I also get confused when my BP is low (in addition to lots of other symptoms). My neuro told me to eat lots of salt and drink lots of fluids. I do have lots of salt but it doesn't seem to help. Oh well, maybe I will have a few more bags of crisps a day! Best of luck with it all - I sincerely hope you get the treatement and care that you deserve. Do you do any forms of gentle exercise like Yoga? Some of the postures are good for getting blood to the head but for me the effects do not last very long. Maybe worth a try with an experienced teacher who understands the condition and who will go very easy on you (my teacher, even though experienced, gave me an exercise that made me worse, so be cautious!) Best wishes Ben

Hi Vanessa I totally identify with how you have been treated by these lousy doctors. In my experience, doctors have rarely given me a straight answer. It sounds like your Cardiologist is well out of his depths in the treatment of dysautonomia. In addition, isn't it common sense to gradually increase dosage in the beginning and gradually decrease it when coming off it? Even I know that. It is common sense. He sounds like a complete idiot. You really need to see competent people - phone the place you mentioned (begins with Vand...), speak to your family doctor and really try to get them to see you. Failing that, can you go somewhere else? I also haven't had a clear answer on how the BP drops can affect your heart brain. One neurologist said it "can" cause damage, but I guess this is over a very long period of time and who knows how much damage is caused. Hopefully the Florinef will work for you but - as you said - it is important to take things slowly, particularly as our bodies are so sensitive. Good luck with everything - hope you get to see a good doctor. By the way, when you feel like your BP is low, do you do counter manouvres like putting your head in between your legs whilst sitting. That is what my neuro said to do. Take care Ben

Persephone Well done on completing your first term - that is a truly great achievement with all you have had to contend with. I hope next term is easier. Ben

Good luck for today Ernie! Let us know how you got on. Ben

This is fantastic news Ernie, I'm really happy for you. Sometimes things can go better than we expect and this is one of those times. I hope it goes even better on Friday! Ben

Ernie, I admire you so much.. You are a very selfless, giving person and I hope and pray that a new drug will be able to help you. I know that research is being done all the time in Israel and Please God thay will find the right one for you and everyone else as well. Best wishes Ben (London)

Hi, I also have breathing problems. I also have sleep apnea. I don't think much can be done for the shortness of breath but maybe it will improve with time. Take care, Ben

Hi Sue, Welcome to the forum. I also live in the UK (London) and am under Professor Mathias. I am not sure if I have EDS because I have yet to undergo testing (I go to Queen Square for testing in a couple of weeks), but he said there is some evidence of joint hypermobility. I share some of your symptoms, like the pressure in the head and feeling like falling. Hope you feel better soon, Ben

Hi Vanessa I hope everything goes really well tomorrow. Ben

Hi Linda Wishing you the best of luck for your appointment - I hope you get out of it everything you hope for. Let us know how it goes. Take care! Ben

Thanks. My impression was that everyone faints on the test so it doesn't sound too bad. I am not sure if I am having the blood volume test. Does it have a special name or abbreviation? I definitely didn't see "blood volume test" on the list. Besides, with the amount of X-Rays and CT scans I have had recently, I would end up glowing in the dark! Ben

Hi everyone, hope you are all ok I am going into hospital in a few weeks for autonomic (and a load of other) tests. One of the autonomic tests is a prolonged tilt table test (and they measure adrenaline and dopamine before and after) I think I recall people on this forum saying it is not nice. Can you let me know what I can expect please? Thanks! Ben