Hello, I'm New

[Sandra]

Hello Everyone

I am very, very new to this, and feel a bit isolated. I found this website by 'Google-ing', it's reasuring to know that I'm not the only one.

I have been ill for a long time with heart problems, breathlessness, joint pains, fainting... I could go on and on. During my last stay in the Coronary Care Unit of my local hospital, when my heart was racing and my blood pressure so low, it was barely regestering. I was sent up to The Hospital for Neurology and Neurosugery in London.

My Doctor there is called Professor Mathias. I was put through a whole battery of Autonomic tests, I was told I had Autonomic Dysfuction. The Friday before last, (20th Oct) , I was told I had POTS. I had to see a cardiologist up in London, she said she is going to put a pacemaker in to make me feel more comfortable.

On Monday 24th Oct, I had to travel back to London for a lot of heart tests. Then last Thursday (26th Oct) I had to go back up to the hospital to see a Professor of Rhuematology. His name was Professor Grahame, he said I have Ehles-Danlos Syndrome, and the reason I have been in so much pain, especially with the stairs, is that my kneecaps sub-lax or semi dislocate each time I bend them.

Yesterday, myself and my daughter visited my Mum. We were just sat chatting and having a cuppa, when I fainted. Mum called an ambulance, when I was in the ambulance I had an ecg, and it showed my heartrate was 32. And I was feeling a lot better, I wonder what it was when I felt bad! By the time I got to my local hospital and was wired up to the monitors, my heart was 140. it took 3 hours before it stablised and I was able to come home. The frustrating thing is none of the doctors in A&E had heard of the conditon POTS.

My arms are covered in bruises, as it took 2 nurses, and a doctor to actually put a canular in to take some bloods. Everytime they tried, my veins just kept collapsing. The doctor managed to get half a tube of blood from a vein in my hand, but that was just mainly bubbles coming out.

Can someone tell me please, is this normal???

I am also feeling very weepy, I don't know why. Now I have a diagnosis, I should be happier, but I just feel scared. So I am sat here now, scouring the web for any info on either of these conditions.

I am on beta-blockers (Sotalol), steroids (fludrocortisone), aspirin and Omeprazole to protect my stomach. I am also on Colofac, which is an anti-spasmodic because I have Coeliac Disease (gluten intolerance) and IBS. I also take 2 Adcal-D3 (chalk tablets) and Risedronate sodium tablets because I have Osteoporosis.

Sandra

[persephone]

Hi Sandra, welcome to the board. I'm from the UK and have POTS too. Interested to read about a pacemaker, as that's not a standard treatment for pots- I'd be intersted to hear more about why and how it's going to help etc? I have EDS too- I see Professor Mathias and Rodney Grahame.

It's a big thing to take on board- but keep pushing and POTS won't get in the way as much as you think!

[Sandra]

Hi Persephone

Thanks for replying. So does POTs & EDS go together then?

Only for the past 4 years I have been under a rheumatology consultant at my local hospital who was treating me for arthritis. Cortisone injections into my hip joints to ease the pain, and anti-inflammatories to help with my joint pain. It looks like that was all for nothing as i have found out I don't have arthritis.

Prof Mathias made the appointments with Prof Grahame and Dr Holdright for me. Dr Holdright is the cardiac consultant working for The National Hospital, and University College Hospital. Her main hospital is the Heart hospital in Westmoreland Street, it's still part of UCLH.

On Monday (26th) I had an echocardiogram and yet another Holter monitor put on. She said as soon as she gets the results in a couple of weeks, she will ask me back up, and put a 'Reveal' into my chest, which is a heart monitor that stays in for up to 18 months. Depending on what that says, depends on what type of pacemaker she will use.

When I had my autonomic tests at the National hospital, and they tilted the table up to 60 degrees, when I fainted my heart actually stopped for 47 seconds. When I woke up the crash team were in the room.... again! as this has happened a couple of times in my local hospital too. I wonder if this is why I was referred to her?

It's great to have someone to talk to, who knows how I feel!

Sandra

[MomtoGiuliana]

Welcome Sandra. I am glad you found us. I understand how you feel emotionally. It is very overwhelming. The good news is you now have a diagnosis and there are treatments that will help. Many have EDS and POTS and have a good quality of life.

Katherine

[bttrflyamby1981]

Just wanted to send you out a welcome!

Amber

[persephone]

Hi Sandra, yes EDS and POTS very much go together. MAthias and Grahame have discovered something about slack arteries causing blood to pool in the legs, which induces a reflex tachycardia/drop in bp on standing in EDS patients. It does make sense if you think about it.

47 seconds? JESUS CHRIST! Can you remember it? Did you have any weird experiences?I can't imagine how bad that must have felt.

*hugs*

How old are you (if that's not a rude question?) I'm 25; have had POTS quite badly for 2 years now, but have fintined on and off since I was 12. I also have a gluten intolerance, like you. Do you suffer from migraines? POTS has caused me to suffer really horrific hemiplegic ones, but no one is sure why yet....

[Ernie]

Hi,

Welcome aboard.

Yss, your symptoms are normal for POTS and EDS.

Do you have the pacemaker in yet?

[Sandra]

Thank you everyone for you lovely welcome

Persephone - no not a rude question at all, I am 44.

I have always, as far back as I can remember been prone to fainting or feeling faint. It was something I just coped with, and the feeling of lightheadedness, it was just part of my life. When I fainted, I wasn't out for long, maybe just long enough for my eyes to close and open again. I didn't bother going to the doctors, as I felt 'normal'.

It was only this time last year, when I started to faint at strange time's, eg at 2am one night, my daughter was being sick in the bathroom, and I got up to see to her, and fainted. Then about a week later, I woke up at 4am to use the toilet, when I fainted out cold again with no warning, my husband said I was out for quite a while both times. The next morning, I had a check-up at the doctors, and he couldn't find anything wrong.

Then on 16th December last year, I got up, put the landing light on to wake the kids up and fainted again with no warning. Apparently this time I was fitting. My husband had already left for work, so my son called an ambulance.

I was in A&E, with the monitors on, thats when the doctors noticed the tachycardia. I didn't really notice, as I had 'always' felt a bit like that. Sounds a bit strange when I say it, but you would probably understand what I mean. Then my pulse stated to go very high 180/190 I could definatly feel it then!

I went out cold again. I was told by the doctor, that my pulse was 188 then stopped. I woke up in resuss. My husband and daugher were with me at the time, and they said I flat-lined and the doctor shouted crash, and whisked me away. It must have been awful for them, as they were ushered into the relatives room.

I came out Xmas eve on beta-blockers.

This became a familiar pattern over the next months. In May I was told I had abnormally low blood pressure, and was put on fludrocortisone. Then I was told I was being referred to The National Hospital. My first appointment there was in July for the autonomic tests, then August to see Prof Mathias, then in September for an Atropine test, and now October to see Prof Grahame & Dr Holdright.

I have been quite lucky I suppose that everything has happened quickly. But it's just a bit too quick if you know what I mean. my head is still spinning. Looking through this website, and the EDS one, all the sypmtoms are all so true, I have almost all of them.

As for my heart stopping when I fainted, I didn't get any warning that I was going to faint, no buzzing, no lightheadedness, I just went. I didn't actually feel any different when I came round, just really groggy, like a 'normal' faint. My husband did say they were massageing the side of my neck. Not too sure why. i asked dr Holdright about this, she said it was not that uncommon for the heart to stop for a shrot time during a faint, but mine was slightly longer than expected. The good news is that it does restart on it's own.

Ernie - No I don't have the pacemaker in yet, I should hear in the next few weeks.

Does anyone else have a pacemaker fitted? and if so do the faints stop?

Sandra

[AJVDK]

I just wanted to drop a line and say welcome!

Amy

[Guest dionna]

welcome to the forum Sandra. i hope that you feel welcome to ask about anything. always remember that you are not alone and that there is always someone here that will understand exactly what you are going through. take care and i wish you only "good days"!

dionna

[scarfgirl]

I have nothing much useful to add, just wanted to say welcome and to let you know that what you're feeling is quite normal. While it's a relief to finally have a diagnosis, finding out you have an incurable chronic condition is always hard on the psyche and it takes a while to cope. Hang in there.

[Sandra]

Thanks everyone for your comments.

Just a quick question, since December I have been told not to have caffeine or alcohol, as they are stimulants and will affect my heartrate. I'm not a great drinker, but I do enjoy the odd glass of wine.

Last Christmas I bought myself a bottle of Chardonay to have with my Christmas dinner. It's still there, looking at me everytime I go into the dining room! Will I ever be able to have it? or is alcohol definatly off limits?

Sandra

ooh, that makes me sound like a right al-key

[persephone]

Hey Sandra! Wow, that's well scary! They don't THINK my heart stops when I faint, but no one has been able to provoke a full loss of consciousness on tilt- they always stop as soon as I get symptomatic.

IF yOU'Re anything like me, you can blow out now and again with alcohol- last night was literally the first time I've had a drink in months and months, celebrating the end of my master's. I normally stick to clear spirits- they seem to be ok with me (e.g Malibu, vodka) but I made the utterly STUPID mistake of drinking a glass of red wine after....well, let's just say I'm going to pay dearly today! My head''s banging already!

Are you on the email lost from DINET? I tried to send a message round everyone lately; Iwant to try and organise a meet up in the UK for all the British sufferers- especially now I have more time on my hands, having finished my MSt.

Let me know if you're up for it- Hampshire's not far from Oxford!

How is your walking and stuff? Do you, like me, also regard stairs as 'the enemy'??

[Tanzanite]

Welcome, another one from UK here. My specialist actually prescribed caffeine for me. He has done a study on it and found it helps a lot of people with autonomic problems. But then, everyone is different!

I've seen Professor Grahame (very nice man) who diagnosed me with EDS and said autonomic dysfunction can be part of it. This was in 2001 and they were only just learning about the link.

[willows]

Hello Sandra welcome to the site, I am a UK suffer like yourself with Autonomic nerve dysfunction.............its the pits.

I'm gobsmacked that you have got help so quickly , my GP has been trying to get me a pacemaker for years as my heart beat also bottoms out and I have been down to 30 beats a minute and my heart has also stopped ( blacked out onto floor)

Question; did you actually see Prof; Mathias????

I went onto the National and was treated really badly, left sicking all over the floor, no meds , no help ,I'd never go back again now and have no faith in London ............but that only my option of them all.

I'm off to see a Nero man today as my right eye hemorrhage on Sunday .

Do you bleed in your skin? do you get horrendous headaches ( as your heartbeat is low) that beat in time to your heart? but disappear when you stand ??

Hope that you continue to get the help you need .

Best wishes Willows.

[Sandra]

Hi

Persephone - Brilliant, so one day I may be able to drink again. Apart from wine, I drink Bacardi.

It would be great to have a uk meet, but not just yet, as i am grounded When my heart is sorted, and I can go out of the house on my own again, maybe in a few months time.

Do you know I shed tears when I read what you said about stairs, so true.. yes, I hate them, it's just so, so painful, and I get very out of breath after about 5 steps. Coming out of Warren St tube last week going to UCLH, I caused such a traffic jam on the stairs... why does everyone want to run about like maniacs in London!

Speaking about the tube, in July after I saw Prof Mathias, I had to have a 24 hour blood pressure & a Holter monitor on. It was such a hot day that I was wearing a vest top. You should have seen the suspious looks I was getting with tubes, wires and a box strapped to me!

Tanzanite - Yes, Prof Grahame is a lovely man isn't he. I was in his room for 55 minutes last week. He gave me such a thorough examination, When I came out the waiting area was packed, I felt all these eyes look at me when I hobbled out. It must have put him so behind.

Willows - Hello, maybe I got seen to quickly because I was in my local hospital's Coronary Care Unit when my cardiac consultant made the appointment for me to be seen by Prof Mathias. He is a lovely man too. His SHO Dr Davidson was in the room with us, they both examined me, went through my notes, and put me at ease. It was at that appointment that Prof Mathias said he was going to get two of his collegues, Prof Grahame & Dr Holdright the Cardiac Consultant from The Heart Hospital to see me. He did listen to my chest, and mention the astoyle (heart stopping)

I too flaked out on the corridor floor after my autonomic tests and my Atropine test, but they came to help straight away, I also had to stay off my meds for the tests.

Funny you should mention headaches, I seem to always have a headache.. but never linked it to POTS, then again, i have only just found out I have POTS, so not sure what's linked to it, and whats not. I've actually got one now. I thought it was because I have new glasses for reading, it's my 3rd prescription in 2 years. Maybe it's not my glasses causing my headaches then...... actually would POTS make you sight go blurry?

I don't know about bleeding under the skin, but I do bruise easy. My arms are covered in bruises from Monday when I collapsed and they tried to take bloods but my veins kept collapsing.

How did your Neuro appointment go?

Sandra

[persephone]

EDS causes easy bruising! Good that Professor Mathias is helping; some of us have had less pro-active responses from him- so go you!

Don't cry- it won't always be like this--the pacemaker and treatments might make a huge difference!

Just 4 weeks ago I was well enough to be riding a bike around Oxford! I am convinced that I will be well enough to do that again soon..

[willows]

Hello again Sandra

My Nero went well for once I had the doctor, then registrar then consultant in with me............I did something I always said I'd do ?????? I took a normal photo of me in and a photo of me having an 'attack' boy did that shock them.

I'm now to have injections added into my 'witches pot of drugs' and I'm going to be assessed elsewhere again.

Photo's do work ...............trouble is I look so bad in the photo they thought it was my mother and not me

Look after yourself................. Willows.

[Sandra]

Hi Willows

Goodness you must look terrible in the photo if it shocked your doctor's, but if that's what it took to get them to help you... Why don't they just keep you in under observation, so they can actually see first hand what your like? I hope the injections are of some help.

When I was ambulanced in last year in December, I was kept under obs in the Coronary Care Unit for 7 days, then again in April when I collapsed, I was in CCU for 9 days, then in May again in CCU for 4 days. So I am lucky in that respect, that they have seen me at my worse.

Take care

Sandra