persephone

The last sentence from prognosis is apparently a reference from: Baguley IJ, Heriseanu RE, Cameron ID, Nott MT, Slewa-Younan S (2008). "A critical review of the pathophysiology of dysautonomia following traumatic brain injury". Neurocrit Care 8 (2): 293?300 This was also cited earlier in the article under Causes, where physical trauma was listed as a cause of dysautonomia. Again, this shows how poorly secondary material is cited in the Wiki article- an article dealing with a very specific sub set of patients is used misleadingly to generalise about ALL patients. I think Firewatcher is probably more qualified than I am to change the article- I haven't kept abreast of the very latest research for a couple of years now- I haven't needed to because of Epogen working quite well for me. The reason I raised the issue here is because I knew there were people who would feel like I do, and I also haave concerns about those who are newly diagnosed or who suspect they may be suffering from dysautonomia. Imagine googling dysautonomia and then reading this article (it comes up high on a google search). You'd be scared out of your wits! I think it's a shame that something meant to convey info is instead potentially spreading misinformation and ignorance.

The prognosis section is dismal! However patients with Ehlers-Danlos Syndrome, Marfan Syndrome or Parkinson's disease have a chronic, progressive, generalized form of dysautonomia in the setting of central nervous system degeneration, leading to a generally poor long-term prognosis. Patients can die from pneumonia, acute respiratory failure, or sudden cardiopulmonary arrest. Makes it sound like everyone with EDS/ Marfans can expect to get worse until they die. NOT TRUE! I have an aunt at 96 with EDS and dysautonomia. She is strong as an ox! Plus, how many of us have been told that a lot of folks can improve, and DO improve?

http://en.wikipedia.org/wiki/Dysautonomia Umm....whoever wrote this appears to have NO KNOWLEDGE of treatment, or the potential for improvement in dysautonomia. Proof once more that web sources should be used with caution and discernment!

Hi Lois! Long time no speak, how are you? I've been on Epogen for 3.5 years now. I'm th eonly UK patient taking it for POTS. It's helped me a lot. BUT: I've had some flare ups recently, and have asked for my dose to be reviewed but no one seems to know what they are doing! I'm taking this extremely potent med with NO ONE to oversee my blood chemistry, my overall health AT ALL.

I can't stand Christmas. It reminds me of who is NOT here. I think several folks feel the same, even without health issues.

I can't stand Christmas. It reminds me of who is NOT here. I think several folks feel the same, even without health issues.

I'm a first generation member- 5 years this week. I live up to my name (it means boomerang)- I disappear for AGES and then come back with a vengeance

I was normal before POTS too, but now I get SO ANGRY with for example crappy Christmas jingle music. "I wish it could be Christmas every day". I HATE IT! If I go and visit someone, and they keep their TV set at full volume while I am trying to speak with them, I find that unbelievably rude. It's just so ignorant. and it physically hurts me to listen to loud noise.

Another thing I can't bear is SNIFFING. Man, that makes me mad.

Oh my God. I thought I was the only one! For at least 15 years I have HATED the sound of people eating. I also am driven nuts by people eating spaghetti and scraing the spoon and fork- if I am at home and someone eats spaghetti I have to leave the room. I simply cannot bear it. I also shout at people about eating like animals. It is just so disgusting, also, people who talk while they are eating or eat with their mouth open. I could punch people for doing this!

Thanks Pat. Joined some on facebook, but thought it was worth asking here too because migraine is an issue for so many of us. I just can't get any medical professionals to help me right now. Do any of you get ppins and needles in BOTH legs with migraine? I have very different sensation from my norm this time.

Thanks Pat. Joined some on facebook, but thought it was worth asking here too because migraine is an issue for so many of us. I just can't get any medical professionals to help me right now.

Thanks, Lissy. What does PFO stand for?

I had a hemiplegic migraine on November 30. Long story short, I couldn't get a Doc to give me a strong enough med to kill it in time, and now, my head is still sore almost a month later. I get a few days where the pain isn't bad, but the ringing in the ears and visual snow seems to persist. Today it's flared up again- no hemiplegia, but 10/10 pain, and nausea and vomiting. I've never had so many headaches in such a short time like this. The Docs I've seen have all been useless. No one has even performed a scan of my head. I guess they think because I have a history of migraine, there's no need to worry about anything. These migraines are the worst I've ever had in my whole entire life. Has anyone else had similar? What works? Triptan is contra-indicated for hemilegic aura migraines, and I am also intolerant to calcium channel blockers which are a second line treatment. Tramadol, codeine and anti inflammatories also do not help. If anything,anti-fs make my stomach so much worse. I can't tolerate them. I am also unable to take most anti emetics: cyclizine and metaclopromide cause me to have an oculogyric crisis! This is one big fat medical DISASTER. And I don't mean to be dramatic, but with EDS in the family, and 5 other relatives who have all had aneurysms or haemorrhages, including my uncle at 37, I just don't think anyone is taking this seriously enough. I got seen by a neurologist who sent me home with such bad tachycardia and hypotension and pain in my head that I COULD NOT WALK. A nurse whad to wheel me to the cab and lift me into it! The attitude of everyone seems to be, if it was an aneurysm it would have happened by now. I don't know what else to do. DEMENTED!

Thanks everyone- Erik, I'm so in tune with what you're saying. I say time after time that hearing is the last sense to go. It's strange. I've been able to hear through anaesthetic which totally freaks people out. I'm better than I was but I *still* have bruising from the paramedics thumping me in the chest- that was 11 days ago! and there is a lump sticking out between 2 ribs. I think this is a bit of a pots crash. The migraines are persisting too. But I'm not syncopal now which is good.

Hello everyone. I never gave you a proper update on my first long haul flight, from the UK to the US. Well, I followed the tips very kindly given here- rehydration sachets, supplemental oxygen, and drinking like there was no tomorrow. I was absolutely fine. I had *one* spell of SVT that lasted about 30 seconds, and kicked in about 5 hours into the journey. But it went away on its own. I had to go to the bathroom about every 20 minutes, but this was good because it kept me moving and didn't let my bp drop. I landed in Boston and I was absolutel fine- I couldn't believe it! The flight back was harder- it was an overnight. This was my first experience of jet lag, and it lasted for about 6 days. My sleep pattern was all wrong, and I felt slightly flat, down and anxious. My Dad did too though, and he's normal so I think it must just be jet lag in general! I have a very good friend at University who is from Texas and every term when she flies back to the UK she feels the same, so it must be really common. For those of you who need to recline, like me- Virgin premium economy seats recline by 8 inches, whereas the equivalent with British Airways is only 3". Virgin were quite disorganised though, and I'm not sure I would fly with them again- they made boarding a lot more stressful than it needed to be. Overall: great success, no POTS relapse triggered by flying. I made sure I took it easy the day after landing, and I was fine. Dad and I went on a wonderful tour of Boston, and I psyched myself up for my conference which began two days into our stay. We loved the US- it was our first visit, and everyone we met was so kind. All the Harvard folk were lovely, my paper went very well, and I'm so glad I braved a transatlantic flight to make the most of this opportunity. It's madaeme a lot more confident about international travel now- I can go beyond Europe without ill effects...though I'm not brave enough for Australia just yet Thanks everybody for helping my flights go well- you gave me the courage I needed, and the advice! I appreciate it so much!

I still find it really hard to understaand how you guys with POTS get insured to drive over in the US. Over here, you have to go six months or a year without a single pre-syncopal episode before being allowed behind the wheel. If you are at risk of fainting, you simply can't drive. If you drive and something happens, your insurance will be null and void unless you can prove that fainting isn't an issue, and nor is a brain fog/cognitive impairment issue. I've been learning to drive and was doing really well but had a relapse this month. I have now had to put my lessons on hold. I don't feel well enough. I couldn't live with myself either if I passed out hor went dizzy at the wheel and really hurt somebody.

I feel for you. I eventually was abandoned by my POTS docs- all three of them. I had a flare up last week. I had to be WHEELED to the GP surgery because I couldn't walk. I had gone blue in the street, slurred, and collapsed. I went in to see him. I spent 40 minutes talking to him. He didn'ttake my pulse. My bp. Or anything. his grand conclusion? "You're tired, it's been a long term. Go home and relax. Do nothing for a bit, be a teenager." This is a GP I would trust with my life. I am not taking it personally. No one is perfect. I've learned not to put my absolute faith in *any* Doctor, but rather in my own resilience. It's the only way not to end up getting that horrible sense of violation when a Doc screws up- and they do, quite often. Some more often than others. I would try and speak to the other Doc from th eneighbouring state- even if this jerk apologises, you won't feel the same about him, plus you may feel resentful about not being able to tell him exactly how rubbish he made you feel. Take back the power and things will get better. Hugs.

I'm so pleased Some folks can get a bit defensive and think I'm trying to say it's mind over matter, which I'm not. I guess I'm just trying to say things can get better.

Hello. I have POTS and I work in academia. I first showed symptoms at 12, in 1994. When I felt bad, I would find it much harder to concentrate. Before I knew I had POTS (found out I had it in 2005), I had already figured out that revising for exams, or doing my homework, while lying down was what worked for me. I struggled to physically sit up in class but I thought everyone else was the same- I didn't realise it was abnormal. There were times when I felt really terrible but it didnt stop me achieving- I left high school with straight As, graduated with a 4.33 GPA and am now doing a PhD. There are times when I feel I don't retain things, but I just work as hard as I physically can on days and weeks when I'm well, and find that it just about compensates for the times when I can't. And if you look back through my posts, you'll see things have been terrible at times- my blood pressure flatlines, I have a wheelchair sometimes. Just this past week I had a terrible flare that saw me unable to get up without falling, but I have just finished an article for publication with Harvard this very week. I'm not saying this to undermine what you're going through, but to try and give you some hope that things can get better, and that your daughter can go on and achieve things. Good luck! Keep us posted

Woot! A 2 day suspension? That would NEVER happen in the UK. We would just have to shut up and put up. Nobody ever seems to get into trouble for anything very much over here, especially where disabled parking is concerned.

You were brave to go- I've got one coming up this summer to 'celebrate' 10 years since leaving High School but some of these girls were the most horrible vile humans I've ever met. I'm probably quite unusual in that I'm in touch with several old teachers, but not class mates. The Old Girls Guild have me giving a lecture next month on my PhD, so I can still keep in touch with nice folks, but hopefully not the nasty ones. I don't want to see THEM ever again! I was the only one in my whole year who didn't want a year book. I didn't want to be reminded of some of the things that were said and done to me by my peers. My teachers, on the other hand- well, they've given me so much, and I make sure I let them know how much I appreicate them. They know about the POTS, too.

Hello folks. Long story short, syncopal attack hurt my neck last week, so was taken to the hospital byambulance and given entenox (gas and air). Within a short time I felt my blood pressure bottom out and had no way of communicating with anyone. The paramedics had to stop the ambulance, shine lights in my eyes (my pupils were sluggish and latterly not responding to light), and then start thumping me in the chest. I'm all bruised. I could hear but not communicate. I've been able to hear even on tilt when I have ZERO bp. No one can explain this- I personally think it's proof hearing is the last sense to go. What I'm wondering is, could Entonox have caused this episode? The longer I breathed on it, the weaker I felt- or could it have been coincidence? THe literature I've read about it says it's got minimal side effects, is fine for most folks and has very few contra-indications. Have any of you experienced this with Entonox? I never EVER want to go through that again. I thought I was dying.

That totally *****.; Poor her; poor you. Could you compromise- help her over the phone with insurance stuff, or have her come to you so you could lay in bed and help? It might feel like an onerous task now, but I bet you would feel better knowing you'd helped in some way, and then the chest pain might let up because you wouldn't feel so powerless.

I'm a strict vegetarian- no meat, fish or eggs. Protein is eaten to excess in the Weat- you can get your daily requirements from beans on toast! Iron and B vitamins are the ones to watch. Lots of leafy green veg- kale is wonderful! And you should be fine