persephone

UK POTS Doctors have never done anything to help me, not EVER. Until now. I have found a new consultant electrophysiologist who is absolutely brilliant in the south of England. PM me for details. I will NEVER go to see Professor Mathias again. He stood by and watched as I almost lost my entire career. Luckily I have a Doctor who is worth his weight in gold, and is informed. POTS is verifiable. It *is* a real illness. We cannot cause our own tachycardias. Our own hypotension. It doesn't work like that. Get out of the London hospitals NOW is all I can say- they never did me ANY good. Now I have my life back!

Do it. You say working ten hours a week- I'm assuming that means part-time paid employment, in addition to academic work? I found my Master's really gruelling. We had fewer than ten hours a week of classes but were expected to spend at least 40 hours a week reading and researching, and to treat grad school like a dull time job. I'm doing a PhD now and have no formal regular class commitments. However I still regularly work a 60 hour week or more to keep momentum. It takes a lot out of me when my ans is bad. I'd say you can't anticipate how tough grad school is. My undergrad degree was a walk in the park compared to the volume and level of work I am expected to handle now. Register while you're well because the last thing you want when feeling rough is a load of irritating paper work to deal with. Take it from one who knows!

Anyone else get this? The pain I wrote about the other day is now replaced by random episodes of itchy tingling across my scalp and arms and legs at different times. Weird or what? It's not listed as a side effect in the BNF- british national formulary of drugs. So I'm not sure if it is the drug? It certainly seems to coincide with me starting Mestinon though... Would be really interested to hear whether y'all have experienced similar.

Hello. Started this today. My arms are so sore and heavy can barely move them. Won't be able to type soon. This is just on 30mg dose. Does this get better with time? What helps? Thanks in advance for info

Hi ladies. Octreotide has totally saved my bp. I still get teachycardia but minus the terrible syncope. Next week I'm starting mestinon. Have been in hospital for a month now- the best one EVER. And I'm a hard woman to please, as you know! Anyone else ake octreotide? Do the crazy GO side effects - aka looking 9 months pregnant- go away? Please tell me they do...!

Hello everyone. I'm currently in hospital in London with a professor of Syncope looking after me (not Mathias, but a cardiologist instead). They even have nurse specialists in syncope. The nurses are brilliant! They really care and are very smart. They know how it feels to live with this. It looks as if my EPO has stopped working, because my haemoglobin level is low, and it should actually be abnormally high while I'm on epo. We've tried to double the dose to see if that reduces my symptoms. Failing that, we may be trying octreotide next, I'm not sure. Someone suggested to me that during my year at Harvard, I might think about seeing Blair Grubb. How do I go about this? Do I get a UK GP to send a referral? Do I email themmyself? How much notice would they need- should I make contact now in time for the fall? How does it work? Does anyone know? I came to see a UK expert about the flare up on March 3rd but they 'couldn't do anything'.... I'm holding out for this new syncope chap, but I want to make sure I can see someone while I'm in the US, and maybe speak to them about treatments available over there that aren't here.... Thanks in advance for any info you can provide.

Hey ladies (and gents - I see there are more of you now). I know migraine is a common symptom of POTS. I have noticed a very clear link between migraine and POTS for at least 3 months now. I'm going to see Prof Mathias about it on Wednesday. But I just wondered- do any of you get SEVERE stabbing pains in the head with your migraines? Mine are almost always left sided. In my temple. And I'm having one now that has me crying out when the pain comes. As if I'm in labour or something. It's unbearable. My mum is worried because she gets these too...as part of her MS These headaches are happening to me at least 3 days a week, EVERY WEEK for the past 12 weeks or more. Before this, my POTs was fine. BUT I can't tell which came first with this flare- the POTS or the migraine Chicken and egg. Whatever way round it is, both seem to be bouncing off of each other I just wondered...has anyone else had this? It's hard to get treatment for the migraines; I can't have triptans, epilim/sodium-valproate or calcium channel blockers, which rules out the first line treatments, really.

It doesn't cause problems. It's just the way you're made- you either have it or you don't. I'm also not sure about the autistic links either. I don't think that's been proven. I know a few people with it here at Oxford- it was a medical student friend of mine (with it) who explained it to me. Until that point, I thought everyone was like me and tasted their words. Every name, every word conjurs up a taste to me. My brother is salt and vinegar flavour crisps (potato chips) My mum is a fig roll biscuit! My D.Phil (PhD) is a piece of seaside-rock with pink and green colours And the word POTS is beautifully rich, dark, melted chocolate. If only the real life experience of the disease was so pleasant in stead of so soul destroying...

I have gustatory synaesthesia which means every word I read or hear has a taste attached. For real.

I get this as part of the aura of a hemiplegic migraine. It's always my left side that's affected.

I have POTS but am looking at the possibility of MS too, as my mum has MS and a lot of our symptoms are similar- same type of migraine, same types of joint pain, fibromyalgic type symptoms, brain fog. I have the more pronounced tachycardia and syncopal episodes. But I have neuropathic (possibly) pain below my knees and in my trigeminal nerve (most common presentation of MS in those under 40), and problems with balance and walking in a straight line. Did you get diagnosed with both at the same time?

I hope I'm not in the menopause- I'm 28! Flop - I have double chins in all my pictures nowadays. Tis the price I pay for being able to walk most of the time... Are you out of hospital - can I text you / ring you? Would be nice to have a catch up! x

Don't even get me started on this. Since starting meds for POTS 4 years ago I have gained 70 pounds. Yes, SEVENTY POUNDS. I hate the way I look

Hey Flop, how are you and your wrist doing? It's interesting that this is raised now because I've had intense nausea, vomiting, headaches and dizziness but with a HIGH bp. My systolic is consistently 150 or higher, and my diastolic is 100 or higher. Today I tried to take a reading and the last number the monitor showed before crashing and coming up with ERROR was 260 systolic. I am not joking! The chest pain is horrendous. I too am fat. Stupid Epogen meds. But that shouldn't explain blood pressure like this. Also- you are NOT actually fat. In your pix you look very slim! Whereas I have a big balloon face...

Hello everyone! I'm coming to Harvard for 10 months in October- I just got awarded funding for a Visiting Fellowship. I can't wait! First thoughts are, I can't wait to meet in person those of you who have been such good friends to me, and supported me on my POTS journey over the last 6 years. I know America is big, but I can travel and don't mind doing so! Big hugs x

I have this right here right now. I am in agony!

Tea and Smiles- such eloquence, such powerful words. We all understand exactly where you are coming from. I am sending you both massive hugs. Smiles and Tea, like you both, I get really sick every WINTER and end up in hospital over DEcember at the least, if not January and February as well. I also know what it feels like to lose weeks of your life - I know because part of my PhD involves working to very strict deadlines and in the winter I find it difficult to meet them. EVery day that I can't work is a day I lament wasted opportunities; one day of my life gone I'll never get back. I myself have not been right since November 23 when I had a kidney stone and then crashed with a migraine, and surgery 3 weeks ago. And it's now FEbruary. I hate the way I have no control over any of this. Although I can't take your pain away, I can share your burden, and tell you both I am here for you. Ther eis nothing on earth like someone who feels as you do; I have Flop to thank for rescuing me from an episode last week where I felt utter despair. Tea, I shall leave you now on a cheery note to say that I may be coming to see you sooner than I hoped; I have made it to the last 16 for a visiting fellowship to Harvard and was interviewed Friday. Letters sent out today; I should know tomorrow. If I make it out there, I'd love to come and see you properly and spend time with you. You've been such a good friend to me all these years. Love and hugs xx

You may be like me: I get syncopal my bp flatlines transiently then shoots up as a compensatory mechanism. It can do this so quickly that in the time it takes for a cuff to inflate and then take a reading, my bp could have dropped and then shot up as a result- yesterday I got a reading of 153/103, but I knew myself my bp had dropped low as I know the symptoms. So what the cuff had caught was the adrenalin overshoot. If it happens to me with POTS, it could happen to other folks, I'm guessing?

I'm with Chaos- I'm never EVER having surgery again. This was my first general since diagnosis and it has been hideous. The after efffects outweigh any benefits the burgery brought me. At least I could work before the surgery.

AVOID OXFORD LIKE THE PLAGUE. Julia Newton, in Royal Victoria Infirmary, Newcastle is meant to be very good; genuinely caring and well informed, as I understand it.

No, not Oxford! Not far away though!

I've fainted several times since a general anaesthetic 7 days ago. I've had episodes of tachycardia and hypotension, which I'm used to. But there's stuff that's different too: several times now my blood pressure has bottomed out but I am NOT mounting a tachycardia- in fact the obs suggest that my pulse doesn't change at all. I wonder if the reason I faint is because the tachycardia is not kicking in to compensate for the hypotension. But I'm just wondering WHY would this happen? why would I be unable to mount a tachycardia? It is very strange. Is this simple Postural Hypotension?

Tilly you need to ask your Doctor about IVABRADINE as it is licensed in the UK now. It's the world's first beta-blocker style drug that does NOT lower blood pressure. When I was first given it, y pulse was doing 180 with my sittimng in bed and stretching an arm above my head. Within 2 doses my pjulse was 65! IT's not without its side effects- what drug is? But it can really work well for severe tachycardia. It's not a first line drug and is quite expensive, but it's good for people like us with low bp so do ask.

Yep, Bellamia, that's exactly what happens to me. That's why I was put under a GENERAL for this procedure. I never got numb enough under local at the dentist's. Also, Janey, I think EDS people are LESS numb rather than MORE numb, which is why my numb tongue is quite odd and oout of sorts. 21 shots would surely have overdosed you on adrenaline? My record was 9 in one sitting, but I think when you get to that stage, anry relief provided by the anaesthetic is cancelled out by the angst of being jabbed and prodded so many times

Hi Tea. I know they gave me fentanyl. I couldn't wee properl for ages. They dipped my urine, said there was blood in it but did nothing. I feel terrible. I feel really nauseous. I'm scared to go back to the hospital in case I get the same treatment. I had a really bad feeling about all of this How are you doing these days? I want to come back to the US soon- I want to visit New York next, in which case, I would LOVE to see you in person. I could give you a repeat performance of my Harvard paper if you like Hugs P xx