April 22, 2013 at 11:14 am #441
Hi I have been diagnosed with cfs or anxiety ,but my main symptoms are hissing in ear hearing a heartbeat
In the back of my head and 24/7 dizziness and nausea. I take my blood pressure nd pulse regular and I take it
Lying down ,when I stand up my blood pressure rises and so does my pulse ,I have a few aches and pains as well does
This sound like dysautomania. Please help me find a Dr in the uk.April 23, 2013 at 1:05 pm #3633
Hope you are ok, you do seem a little anxious,, but it’s normal, everyone on here has been there, and some are still there. You mention a couple of diagnoses and a few symptoms so it’s difficult to gage exactly wht might be going on, but yes some of your symptoms might fall under the realms of dysautonomia and POTS. Have you done any Internet research, alongside this excellent site? Another is http://www.potsuk.org and http://www.dinet.org. Some useful info here and will help you assess your own symptoms against the criteria for POTS. But try not to fret, it might be that you don’t have POTS. I think on both sites it lists doctors that test for autonomic dysfunction In the UK, http://www.potsuk.org/doctors_list2 is the link on the POTS website. A gp referral is usually needed. Not a long list but usually includes a specialist in each region, so south west, south east, midlands etc… Not sure where you are. But feel free to ask anything, people are friendly on here and I willing to offer thir knowledge and wisdom. Look at one of Dr Diana’s excellent and informative videos, also a good place to start…:)April 23, 2013 at 1:10 pm #3634
Thanks I’m.just worried and upset my life is.over how.can I enjoy it now when I used to be a gym freak
All the symptoms fit but to see top.specilists in uk is 9.months waitApril 23, 2013 at 1:29 pm #3635
Is.24/7 dizziness normal.with pots and a rumbling stomach .April 24, 2013 at 10:19 am #3636
Hi, sorry you are suffering so much. I think it’s particularly bad if you are normally very healthy and active, and then suddenly not. I have only been ill relatively recently without answers, at least yet, so know how dismal you feel. Firstly just to address your comment about waiting lists, these probably vary, I am not sure which type of consultant you mean. Are you specifically talking about a POTS specialist? There aren’t many about. Prof Mathais in London is considered the best in his field in the UK, and a Prof Grahame, same hospital I think, a rheumatologist who understands EDS and its relationship to dysautonomia, if indeed this is your problem (which I am not sure in your case). Have you spoken to your doctor or gp about all your symptoms and concerns?
But no it certainly isn’t normal to be dizzy 24/7. That sounds very debilitating and you certainly need an evaluation. Lots of things can cause dizziness but 24/7 is extreme. Do you have any ear problems? Can I ask how old you are? Certain things are more likely to be common in older people, and other things more probable in younger people etc. the stomach rumbling, well it depends if its in combination with other bowel issues, like reflux, nausea, vomiting, bloating, diarrhoea, blood etc… By itself it doesn’t sound troubling just an annoyance. I’m sure lots of people who have IBS will tell you, a gurgling bowel is very annoying! I’ve had that too, and often when you want it least, ahem in meetings, lecture theatres…. Joking aside, please go back and see your gp and discuss your concerns. Book a double appointment if you have to or can. If you not satisfied with your gp, see a different one, or consider a different practice. GP’s are as variable as anything…
Just to say the experience of POTS can be mild to incapacitating, so yes I’m sure dizziness is possible 24/7 but isn’t normal of POTS. People are often more light headed and sweaty, like they might faint, some do faint. Not sure you had this. Like I say try and see somebody. Helps to have someone along at the consultation…
When you take your BP and heart rate from sitting to standing, how much does it rise by? Rises in both are entirely normal, it depends if you have symptoms, which you do, so just to establish possible POTS, need to know those figures, so you can present to your gp. He/she will check them again I’m sure….April 24, 2013 at 10:38 am #3637
Hi it is more lightheadedness than dizzy the room.dosnt spin. I.do ave nausea as well
But also fullness in ears nd yes my pulse rises by 30 or.more wen I.stand up . I also ave.pain between breqsts no sure.if thats classed as chest pain . Thanks for listening I’ll.speak to my gp were are you based ..April 24, 2013 at 10:59 am #3638
I forgot to mention in last message that you can pay for a private consultation. Depending on the length they can be £150-200 upwards. Not cheap but might help, if you can afford it. Waiting time will be less…
Dizziness and nausea go together, so do get your ears checked…..if you been ill a few weeks only could be to do with the ear…
I’m near BristolApril 24, 2013 at 12:08 pm #3639
Thanks any reccomendations who.. I forgot to mention I’m.diabetic so not sure if this caused
It .it happened after a flu jab though. Did u see someone. Private who’s the bestApril 24, 2013 at 12:10 pm #3640
By the way I’m 44 but only thing v
Came up on blood test was iron deficentApril 24, 2013 at 1:40 pm #3641
Well firstly diabetes could be significant here, at least potentially. Not sure if you type 1 or type 2, and if you type 2 if you on medication or insulin to control? Anyway diabetes can cause damage to nerves as you know I’m sure, and autonomic nerves are not spared. Nausea is certainly an issue as damage to nerves can cause your gut to slow. Perhaps ask your gp this? It’s more likely to happen if your diabetes is less well controlled. Don’t want to presume this is happening to you, but see your gp as they might want to address it, or refer you to a specialist. You may need something to help with the nausea. Again gp.
Yes, as the flu jab exposes you to the viruses that its trying to protect you from, ie in very mall amounts, it probably is possible it could have caused you to us e these symptoms. The problem is causation in autonomic dysfunction is very difficult to determine.
I haven’t seen anyone myself about the POTS aspect yes, because I have a lot of symptoms, I’m trying to rule out causes of it all. I saw a neurologist privately, said I am fine. Even suggested anxiety, I thought wow for £220! I am due to see a rheumatologist in two weeks. I do need to see a POTS specialist though and m thinking bout being referred straight to Prof Mathais in London, has to be private though otherwise a long wait as you say. I may look at more local, though its still Cheltenham, which is not down the road..
Blood tests are notoriously normal with the diagnoses with which this website is based around. Occasionally there can be abnormalities, it will depend on the what condition you have and your overall health. Certainly being iron deficient as a women is pretty common. You need to address that with your dr, you might need medication or supplementation. Actually supplements are a good thing as it is easy to be sufficient. Calcium and magnesium are important, as are the B vitamins and vitamin c.April 24, 2013 at 1:47 pm #3642
Do you know how much to see Dr.Mathi in London I have seen rheummy and they done.nothin
Are you on facebook so we cud chat ….April 24, 2013 at 1:51 pm #3643
Yes look me up, Richard ChalkeApril 24, 2013 at 1:55 pm #3644
It wont let me add anyone will facebook cud you look for me amanda Jayne Proctor. I’ve. Pink
Top on with my hubby ..cud u add meApril 24, 2013 at 2:05 pm #3645
Can’t find you under Amanda Jayne proctor, I see a Jayne proctor, wasn’t sure if it was youApril 24, 2013 at 2:10 pm #3646
How strange I dont know why it wont let me add you .silly facebook.
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