DizzyMe

Hi everyone, I started on a low dose of beta blocker(bisoprolol) 3 days ago and have developed a rash(small raised bumps and itchy)across the back of my neck. I don't know if it could be a reaction to the beta blockers or not. has anyone has this kind of side effect with them? I am waiting for a call back from my cardiologist with advice on whether to take more or not, but thought I would post here in the meantime. Thanks. Melanie.

I was told to increase the amount of pillows I slept on.I do find that on 2 pillows I am less dizzy during the night and on waking so for me it works. My consultant said it helps increase blood volume. Did your doctor say how he knows you are hypovolemic? I don't know if its an assumption with ANS issues or if there is a way to tell for sure? Thanks. Melanie.

Hello and welcome. I had a similar experience before I was finally diagnosed with POTS by Prof Mathias in Feb this year. I second Janey's advice to email him directly,he understands the lack of knowledge in this area even amongst cardiologists. I can relate to your frustration.I spent 2 years going back and forth between my GP(who thought I had anxiety)and various specialists who couldn't understand my symptoms until I eventually saw a cardiologist who thought I probably had Anxiety but possibly had an autonomic dysfunction and agreed to refer me to Prof M. It was such a relief when I saw him and he immediately recognised by weird collection of symptoms. I understand your despair with the medical profession, I was struggling to look after 3 very young children and felt terribly let down. In the meantime you could try a couple of things, add lots of salt to your diet to help retain your fluids and improve your low blood pressure and try adding electrolyte solutions,gatorade,V8 tomato juice amongst your fluids. Also drink before getting out of bed in the morning. Feel free to PM me also. Melanie. I knew something was wrong with my BP and I was determined to prove it after being fobbed off for three years. I bought myself a BP monitor and the results have been very revealing I do have bouts of low BP and I can feel when its dropping. The lowest I have recorded was 72/42 my eyes were rolling in my head and my vision was grainy and turning grey. I am 5ft 9in tall and Im a reasonably well uphostered girl, surely in the normal way of things my BP should be high! My cholesterol when tested in 2007 was 7.1, the target in the UK is under 5, this has also been ignored by my Drs. I have days when all I can do is stay in bed as as soon as I get up I feel like I am going to faint. I become dizzy and disorientated. I can't sit as my head swims the only position I am comfortable in is laying down. Its no life at all. For ages now also I have noticed that the blood pools in my legs when I am standing. I honestly thought everybodies legs did that until I watched a documentary on TV with a woman who was having multiple children (can't remember how many) she wasn't allowed to stand up towards the end of her pregnacy because the blood pooled in her legs. I have a tonne of symptoms, freezing cold all the time, hands/ nails go blue, feel spaced out on standing up, see stars when I turn my head, heart rate can rise rapidly on just shifting position in bed the list is endless. I have had a constant headache for the last 4 weeks which is only resolved when I lay flat. Its not a bad headache but I know its there and its grinding me down. I have written to my GP this week with a full list of my symptoms as the hospital that I went to in March has discharged me saying theres nothing wrong with me. I have enclosed with that letter to my GP, a chart showing my BP, Pulse and activity so what I was doing immediately prior to the drop. Having read the forum I have tested my BP when sitting and then standing. My Bp increases with standing(anywhere between 30 or 40 for the systolic, not so much for the other one) as does my pulse (goes from 80 to 135bpm.) My heart feels like its going to come out of my chest. Im getting palpitations pretty much all the time now. Plus a weird sensation in my chest like my heart expands, and then a big heart beat. I may get one or two of those in a row and then it goes away. My problem is that most of the drs who have been involved in my "care" believe that my symptoms are all in my head. My GP has basically told me that I am not allowed to have any more referals. I haven't seen my neurologist for nearly a year despite the fact I have emailed him and told him my condition is worsening to the point where all I can do is stay in bed 5 days out of 7. In the UK you have to have a referal to see a consultant, even if you want to see them privately. I am at a point now where I really don't know what to do next but I can't spend the rest of my life laying on the sofa or bed and not being able to walk around because I feel so weak and ill. I'm so sorry this is such a long post but I have reached the end of my tether! Any advice would be appreciated. Rach

Many thanks for your responses and helpful suggestions.I will definatly look at ways to adjust what I am doing and the baby steps forward is what I need to remind myself of, its great to hear of your achievements at boot camp by doing that. Melanie.

Many thanks for your responses and helpful suggestions.I will definatly look at ways to adjust what I am doing and the baby steps forward is what I need to remind myself of, its great to hear of your achievements at boot camp by doing that. Melanie.

I am very affected by bending over from the waist(i.e to pick something up from the floor,load the washing machine). When I am in a bad patch,which I am at the moment,even bending forward very slightly to brush my teeth,wash face over sink etc triggers bad symptoms. For a few seconds/minutes or so after bending I feel very short of oxygen and tachy,sometimes extremely lightheaded too.The effect it cumulative if i do more. This symptom also happens after squatting and lifting my children. I know that bending is listed under the what to avoid section here but I don't understand the mechanisms that make it so difficult. It feels as though my heart struggles to keep up with the demands these positions place on it but being new to all things POTS I don't know why. Does everyone with POTS feel like this? Thanks. Melanie.

I have 5/6 large amalgam fillings that I have had for years.A while before my POTS diagnosis my mum persuaded me to order a urine test that she has read could diagnose CFS.It measures some kind of process going on and my results were a strong positive for this. I called the lab to ask advice on what I should do next and was very surprised to be told by a Doctor there that I should first have all my amalgam fillings removed as they could be causing this neuro toxic process. I have consulted a dentist regarding this, but then read that there are some implications with local anasthetic and POTS so have put it off until I see my POTS specialist. I would be interested to try the gum test in the meantime if you could provide the details. I wonder if it could be a factor and will of course post if I get any improvement once I've had it done. Melanie. PS. The removal has to be done under a special process to prevent any further mercury getting into your body.

Hi, I live in the UK and have found Gatorade in Waitrose stores or online Ocado,they do 3 flavours.It does seem to help you feel better hydrated. Melanie.

Its how I seem to be too, mine can drop to 56-58 level when sitting watching TV etc and I have overnight bradycardia (on holter). Its definately not a reflection of how fit/athletic I am!

Thanks for the replies everyone,it seems to be a common POTS symptom. I was recently diagnosed so it helps to at least know if what I am experiencing is POTS or not. Thanks for the tips, I think I am in the "accept what is" stage at the moment and yes my children will benefit from less voice raising(I do try not to do that too much). Not being able to laugh too much is a bummer but sounds like it may improve. Hope you are feeling better today Smiles. Melanie.x

Hi, I started taking midodrine a month ago at the lowest dose of 2.5mg. Its not been a miracle cure yet but I have maybe a little more energy and less dizziness so small blessings none the less. At first I wasnt sure if it was doing much but I do feel very fatigued when a dose wears off which also reminds me to take the next one. I think I may feel more benefit when the dose is increased. Side effects have been fine so far, goosebumps and a chill feeling that runs up over your scalp but you get used to it. I think you have to watch that it doesnt send your blood pressure up too much, I've been having mine checked once a week. I hope it helps you feel better. Melanie.

I seem to trigger symptoms if I am talking a lot and if I laugh I feel really lightheaded and start to notice funny heartbeats. It is a big problem if I occasionally do muster enough energy to go out for a meal with friends and then can't join in the conversation or laugh! I also can't sing for very long with my young children and often become symptomatic if I need to shout at them. Is this POTS weirdness or just me? Any tips? Thanks,Melanie.

Whenever I am feeling quite symptomatic or have been standing for a little while my lips turn noticibly blue, it tends to happen on a daily basis. Does this happen to anyone else and do you know why? This has puzzled me for a while. Thanks. Melanie.

Hi, I shower mostly in the evening incase the next day is a bad one! I also tend to have less symptoms in the evening so it makes sense to do it then. Melanie.x

Thanks for the welcome. Melanie.x

I dont take my BP that often but sometimes when I have felt really bad it has been normal.I saw a cardiologist who suspected pots but it wasnt diagnosed until I had full autonomic testing and a prolonged tilt table test.My BP did drop after meals and after standing for a few minutes and was low first thing in the am but sorry I dont know if thats always the case with pots.I did the poor mans tilt test a few times with a heart rate watch(found how to do it under search here)and that led me to believe it was pots.I have learned that if you feel the doctors are missing something you need to push them for tests even though you feel like a hypochondriac!Take a list of what symptoms you have that you think match the condition. Sorry I cant be more helpful on BP front. Melanie.

Hello,I am newly diagnosed with POTS and used to wonder the same thing regarding being symptomatic all the time. My symptoms definately fluctuate,I may have a few better days or sometimes reasonable weeks then a few really bad weeks(If only I knew what I did right to have a good day!).My symptoms also fluctuate throughout the day with the AM being the worst and late PM usually better. All the best with your appointment.(take lots of lists if you have brain fog). Melanie.

Emma, I am seeing Prof Graham next week is that the prof G you are seeing? Yes,it certainly does dish up an extensive range of symptoms! Have you improved since you were v poorly last year? Melanie.

Hello, i'm new here although I have been reading the forums for a while since my cardiologist mentioned a suspicion of POTS. I have found so much helpful information here and couldn't believe that there were other people with the same weird and horrible symptoms as me. I strongly believed that my cardiologist was right once I had read through the information here. I was diagnosed with POTS 2 weeks ago and have an appointment next week to investigate whether or not I have Ehlers Danlos. My symptoms began 2 years ago after the birth of my twins (I also have a 5 year old) and I have bounced around various specialists trying to find out what was wrong and even started to question if it could really be caused by anxiety as was suggested on more than one occasion.Reading the forum gave me the conviction to push for further tests that led to my diagnosis, so THANK YOU. It is a relief as well as a shock to be diagnosed but I am trying to stay positive and hope that medication helps. I have started taking Midodrine and would love to hear from anyone who had good results with it particularly if they have POTS/EDS. I still have lots questions buzzing around in my head so will post a few soon. Melanie. London,UK.