ben_uk

Thanks for your replies. I doubt very much they can do anything about it as it is neurological. Have any of you had any help or been prescribed something? Ben

Hi all I went to Professor Mathias a week ago. He said I need to have autonomic testing so it is being arranged. I know some of you have SOB - but does it happen after exertion or can it happen spontaneously? Mine can happen both ways. Also, how severe is it? Mine seems quite severe, last week it took over an hour to catch my breath enough to talk to people. Last night I had a bad episode. I get light headed, my hands feel heavy and my blood pressure drops (it dropped to 73/53 last night) I am quite scared about this. Your comments would be appreciated. Thanks Ben

Thanks very much Katie for the information and also your good wishes. I will let you know how I get on. Ben

Hi Katie Hope you are ok. You mentioned that there is a topic on NDFR relating to breathing problems. Please could you tell me where about on the website I can find it? I looked but had no luck, Thanks! Ben

Hi, sorry to hear about the rough time you are having. I am also going through a really bad patch. I have EXACTLY the same breathing problems as you and all the doctors so far have said it is anxiety (yeah, right) I am seeing a neurologist tomorrow and I will be telling him about all my symptoms. Have you seen a neurologist? Hope you have a better day today. Ben

Hi Julia, I'm so sorry to hear what you are going through. Enough IS enough. I am also going through a really bad period. I just hope it improves, but at the moment, there have been no signs. What helps you? All the things that used to hewlp me (yoga, pilates) seem to aggravate things at the moment. I take Vitamin C and B complex (a good brand) - not sure if it helps. I also have neck problems (feelings of instability). Oh - I just though of something that may help you (not sure) -- you might want to try a Chiropractor (wait-I know what you are thinking - "I can't have manipulation") who is trained in SOT (Sacro-Occipital technique). It is a very gentle form of chiropractic which places great emphasis on alignment of the pelvis. If the pelvis is aligned/stable, this will take a lot of pressure of the neck (the bottom and top of the spine are inherently related). Trust me - when I went to my SOT chiropractor she said "I was falling apart". My Pelvic joints (called the sacro-illiac joints were completely separated and my neck was in a terrible position. If you take up my suggestion, make sure they are "advanced" trained and know about all your problems (i.e. you must never have manipulation to your neck). See http://www.sorsi.com/prosearch.cfm If you go ahead, phone them first and tell them about yourself. Mine knows I have had serious neck injury together with suspected vertebral artery injury so she never manipulates my neck. It hasn't helped with my POTS symptoms so much (although I dont know what I would be like without the treatment) but it at least keeps my neck and back in better shape. Hope this helps. Contact me if you have any queries. Ben

Hi Jack, Sorry to hear of your problems - I hope things calm down. How do you know it is autonomic-related? Did you get the tachichardia when standing or when supine as well (i.e. was it constant)? Are you going to get tested for POTs, etc.? Ben

Hi Katherine - this article was very informative, thanks! Ben

Thanks Dizzy Dame - this is informative. Ben

Katie - I haven't seen Prof Mathias yet. I have an appointment lined up end o thisd week. My new GP (who is also a neurologist but not an autonomic one) is pretty sure I have POTS or some other autonomic condition. I am nervous about the appointment but also looking forward to it - I am finally going to see a doctor who understands what I have been going through for ages. I have seen 3 other neurologists but they all just said "its anxiety", even though I had a brain injury. I will let you know how I get on. By the way, it is a good idea to jot down your symptoms and bring it with you to the appointment or better still, fax it through to his secretary beforehand. Hope you feel better. Ben

Hi Katie I'm really sorry to hear about the last few weeks. I hope it improves very soon. I am also seeing Prof Mathias. Which Cardiologist do you see? What condition(s) do you have? Do you have POTS as well as the synscope? Hope you get better without delay. Ben

Thanks for your message. There is hope yet! Take care, Ben

Hi, thanks for your reply. If you could ask the doctor that would be helpful. I am seeing an autonomic specialist on Friday and I will ask the same and feedback to the forum afterwards. I know it is a morbid question but it is something I worry about (rightly or wrongly). It would make me more positive to learn that it is in fact not harmful. Thanks again, Ben

Hi, --------------------------------- Effect of POTS on the heart --------------------------------- I read somewhere (can't remember where) that the tachachardia caused by POTS isn't dangerous to the heart. However, there seems to be contradictory information. For example, I know that a continual heart rate of 110+ can cause heart problems (a cardiologist told me this). Do people say it is not harmful to the heart because with POTS the heart rate fluctuates a lot (usually lowers when lying down - but only generally shoots up when standing)? i.e. because it does lower sometimes, this spares the heart damage? I would have thought (common sense that the extra strain on the heart from the tach and blood pressure variations would cause damage to the heart. --------------------------------- Effect of POTS on life expectancy --------------------------------- One more question: if POTS is not dangerous (but is chronic), how come most people with POTS are young?! Where are the older ones? It seems to me that the doctors just haven't researched the effects on life expectancy yet. Your comments would be appreciated. Thanks, Ben

Thanks Jennifer and Sophia. I will not expect too much from the appointment (I kind of was, but not any more). I get the feeling that we are more valuable to the doctors than vice versa - i.e. they can't do much for us but we form part of their research into autonomic disorders. I am just hoping that he can give me something to calm down my nervous system. I feel like I have consumed 1000 cups of coffee. My chiropractor said my adrenal glands are in overdrive. One thing is for sure - I am going to be VERY early for the appointment! Thanks again. Have a nice weekend Ben

Thanks for the info Sophia. Hope all is ok with you. Ben

Hi Katie, It is a great idea to send through some notes about your symptoms prior to the appointment. That is what I have done. (The main reason I did it is because my GP letter was rubbish!). I haven't seen anyone yet who understands autonomic problems. I have seen several neurologists but they just don't understand. Which Cardiologist did you see? I hope your appointment goes really well. The best anyone can do is to prepare a list beforehand so you don't forget anything. Let us know hoe you get on. I will do the same. Ben

Hayley - I sent you an email. Have a good day, Thanks Ben

Thank you Corina (and Hayley). Hope all goes well for you both too (and everyone else on this forum). Ben

Hi Haley, thanks for your reply. I haven't been diagnosed yet, but I am pretty certain I have POTS; if it is not that, it is certainly some sort of autonomic dysfunction. I had a bad head injury several years ago and I have had symptoms ever since, but recently they are much worse (I had acupuncture and it really aggravated my symptoms). I have had a horrible 4 weeks. I get palpitations when standing, shortness of breath, sleep apnea (I am slim and young so it is most likely neurological), erratic blood pressure, and many more!! I had been to neurologists before and they all gave me the standard physical examination (reflexes, prick test, etc). Does Prof Mathias give more than this - like autonomic nervous system tests - in the first appointment. Or do you have to wait for the full battery of tests? 5 days of tests sounds scary. I wonder why they can't do it all in one day?! I am pleased he is nice as I am quite scared. This is all quite depressing, especially as there is little they can do to treat it. Oh well, I have to try and be positive, but it is not easy! Take care Ben

Hi everyone, I live in London and am 30. I have had POTS-like problems for years, but recently they are much worse. I am seeing Prof Mathias next Friday and wondered what I can expect from the appointment. Does he perform an examination on you or does he wait for more formal testing? Thanks! Ben