DizzyMe

Hi Jess, Haven't heard from you in a while but we PM'd a while back. Please feel free to bombard me, maybe able to give a little more help now further down the line! Mel.

Hello Susan, Not sure I can help much but just to say that I can relate to similar sensations.I get electric shock type pricking all over my body at times and waves of something hard to descibe but with a dizzy alarming sensation and feel shakey during and after.I have yet to find a link to why this happens, my specialist put most things down to blood pressure drops. I can very much relate to the fear of something happening when alone with my children(5 and 2 1/2yr twins),I was almost scared to leave the house when they were smaller. I have recently started on Atenolol too but am also worried about it dropping my blood pressure and it seems to linger in my system and drop my siting heart rate too low by day 2 or 3.My cardiologist has suggested I take it every other day and see how that goes which I am about to try.Maybe that could help you. Hope you have a better few weeks soon. Melanie.

Yes definately...One of my first complaints was how bad I felt in the morning.Takes at least a couple of hours to get to better level. I feel like I am wading through treacle like, as you said, my blood has slowed down. Sitting up gradually and avoiding any bending for the first couple of hours helps me and also moving around/going for a walk even though my brain says no.

Thanks for the replies.I am sure I will ask for a sleep study then, even if, as blue says, they think I'm nuts asking.They really should know by now that this isn't all in our heads! Thanks Again. Melanie

I have heard a lot of people talking about sleep apnea here. I have had a feeling since my symptoms started that something happens to me during sleep. If I am in a light sleep just dropping off I wake feeling as if I have forgotten to breathe.I have also had episodes during deeper sleep where I have woken with my heart racing and pounding out of my chest and a sense that something horrible has just happened. I have a POTS diagnosis and wonder if apnea is common with this. I mentioned it to my GP once and she dismissed it saying if I am not waking gasping for air needing to sit up to breathe then im ok, but i wonder, is it that obvious if you have it? I feel silly bringing it up again with my GP without good reason but I do feel that I forget to breath and even get the feeling when I am awake at times too. Any experience? Melanie

Hi Dani, Sorry you are having a difficult time.I developed POTS post partum so I feel for you.Its so hard to deal with a young baby and cope with feeling unwell too.Your body and mind are still recovering and adjusting and the lack of sleep plays havoc with your symptoms anyway. Its hard to know when things slip into true depression but I second the previous comments about trying first to get out of the house for a walk/daylight(maybe early before things heat up too much) and also the company of other mums helps loads too. My health clinic put me intouch with a couple of new mums in my area and I would meet up for a walk/chat etc which saved my sanity. I tried to get up and start the day at a normal time and then rest in the middle of the day which is often easier said than done but its good to aim for! I also found it enormously helpful to speak to a therapist. Take Care. Melanie.

Hello Mary, I also developed POTS after a twin pregnancy and c section.(What does it do to our bodies?).It took 2 years to get a diagnosis and DINET has been a great source of help for me too. Glad you are more "stable". Melanie.

Alcohol is a vasodilator so it causes blood vessels to open up in skin etc (hence red face some people get!)Your heart then has to beat faster to pump blood around a larger area. Maybe we react more quickly due to our sensitive systems, I feel the effects straightaway too. Perhaps this is why some people feel better,they could be overconstricted and it relaxes their blood vessels. I have EDS/POTS and therefore am assumed to be too overdilated already so I think thats why I feel bad after a couple of sips! Shame, I miss a nice glass of wine. Melanie

Thank you for your responses.I can relate to the mechanical breathing so maybe I am hyperventilating.Will try the breathing exercises. Melanie.

Straightforward Hypovolemia.(increase fluids for couple weeks and you will feel fine) Post Traumatic Stress Anxiety Vestibular Dysfunction

Yes bending over makes me very symptomatic. I feel okish while bent then when I return to upright I feel short of air and tachy for a good few seconds. It is accumilative,I have 3 children 5 and under and if I bend a few times in a row thats it I trigger symptoms for the next hour or so. Even my 2 year old twins are used to me asking them to pick things up off the floor and my poor husband! Melanie.

Yes! I am feeling that way a lot at the moment. I hate not knowing how I will feel one day to the next and the restrictions it puts on my life with my 3 beautiful children, I want to run around with them and have all the energy I had before this. The other day I was reading a book with my 5 year old and there was a picture of a mum carrying her child on her shoulders.My daughter asked "Why do you never do that to me?" its those kind of things that make me feel angry and upset. I try to remind myself that there are worse things to have and that being angry is very draining on my energy but sometimes it just gets to you. Melanie.

Does anyone else experience a horrible bursting/overinflated sensation in their lungs? It feels like I have done some seriously hard exercise and also I feel like I am short of oxygen. I have this feeling on and off, I often wake up with it and sometimes it passes sometimes it lasts all day. I guess what I am asking is does it sound like a POTS thing, i am a bit worried it could be something else like a symptom of apnea as I wake up with it? I notice lots of you have apnea, what made you suspect you had it? Thanks guys. Melanie.

Hello, I am trying SPANX (ordered from next) they cover the thigh and abdomen area. I really don't know if they have enough compression power but they are very comfortable and described as control garments so I think they must give some help. Alternatively I have been told a GP can prescribe proper ones on NHS prescription. Melanie.

Just wanted to say well done on reaching a diagnosis. I have just started on Atenolol too 12.5mg too, I,m sure I have seen doses as low as 6.25mg daily mentioned on here as being beneficial as we tend to be sensitive to meds and need less. Melanie.

I am sure they are a common feature in dysautonomia, they are listed under common symptoms experienced on the symptoms page here. I get them too and they are scary even when you have been told they are benign,for those few seconds they are alarming. I have EDS/POTS and have been told by my cardiologist that they are common in this setting. For me they come and go in spells but are def worse around my period and when I overdo it. Melanie.

Thanks, I have EDS/POTS and have wondered the same. Mel.

Yes I can. I am a fellow potsie and if I feel faint I naturally clench my legs, fidget,pace around and now you mention it arch my back and rock my pelvis, how bizarre. As you say I'm sure its the bodys attempt to keep the BP up and move blood around. Melanie.

No, but curious about benefits!?

I saw an interesting item on a TV show in the UK yesterday that I think could be relevant to some of us. A study has been done on the ability of beetroot juice to enhance stamina,reduce the bodys need for oxygen and lower blood pressure. Drinking just under a pint per day has been proven to have these benefits(within a few days too). It is apparently to do with the high concentration of nitrates in beetroot that are converted to nitric oxide in the body. I have seen low levels of nitric oxide implicated in some POTS types here so thought this may be beneficial to some of you,although not where blood pressure is already low or vasodilation is to be avoided(rules me out). There are further studies to be done on long term use but so far the only side effect seems to be purple wee so it sounds like it could be worth a go! Melanie. you.www.timesonline.co.uk/tol/life_and_style/.../article6741813.ece

I have EDS/POTS and have had mitral valve prolapse(without regurgitation) diagnosed by echo. I have read that some people have MVP without much symptom but others have MVPS(mitral valve prolapse syndrome)which includes dysautonomia. As far as I know MVPS is now grouped under the POTS umbrella,but is it the MVP(heart) or the EDS(floppy veins) causing POTS?

Those with leaky veins in their thorax and stomach (one form of low flow POTS) then your stomach and abnominal area may get fatter after long standing/sitting. Interesting...I have EDS/POTS and my abdominal area is quite flat in the morning but I start to look pregnant as the day goes on especially if I am on my feet a lot.Do you know what is leaking out and what kind of treatments are beneficial as I am seeing my specialist tomorrow and would love to discuss it. Many Thanks. Melanie

Hi Janey, I am under Prof M too and am going for my 2nd follow up next week and hoping now that I don't see Dr Ingle.Wow what a horrid appointment,I really feel for you. Its disapointing that Prof M has someone like this working for him as he doesn't seem to share the same understanding of the condition and how debilitating it can be. I didn't have the same problem getting midodrine from Prof M but unfortunately it seemed to be giving me side effects and had to stop taking it.Maybe if you emailed him directly or left a message with his secretary he could prescribe it now.(I think I would also mention the strange Dr who seems to think POTS is a blessing!) I have EDS/POTS too and the POTS developed following my pregnancy but Prof M did mention that pregnancy can improve things,which I didn't understand I will be asking about the EDS/POTS prognosis next week,I have worried that if I have always had EDS will I always have POTS. I would definately ask not to see this Dr again and also report your experience to Prof M. Melanie.

Hi Nikki, Dizziness was one of my first and major symptoms too and I was originally misdiagnosed with vestibular problems.I regularly have a sense of imbalance but can relate to spinny episodes although thankfully they are quite transient. I am more likely to get them in bed and when I first get up.(dehydration?) I am sure they are part of POTs/OI,I assume the lack of blood in brain thing. I am still learning what helps but I notice it is worse if I am at all short on sleep or have let my hydrating slip. Hope you are less dizzy soon. Melanie

Hi Summer, Yes could be as I did spend time outdoors during the 3 days although my hair was covering the area.I'm not usually sun sensitive but maybe while my body is adjusting. Did the sensitivity calm down eventually? Thanks for responding. Melanie.