Learning about Vasoactive Amines

So it transpires that the part of food that I’m not supposed to eat is called a vasoactive amine. There are two main ones: histamine and serotonin. There are others like cadaverine and putrescine (which I think sound made up) made up of the main two. I’ve been doing lots of reading around histamines and amines, trying to understand what it is precisely that I have to avoid. It’s been a bit confusing as lots of things end -amine, like thiamine (vitamin B1), but aren’t actually amines. Luckily now I know what the chemical makeup looks like, I can google the chemical and see if the structure matches. 

This is the paper I’ve found most interesting: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4604636/. It’s called ‘Sensitivity to food additives, vaso-active amines and salicylates: a review of the evidence’ and it’s from 2015. It has lots of tables I found quite useful. It was surprisingly difficult to find much information about histamines, amines or intolerances thereof, even looking for scientific papers. My dietician said it was a new thing and couldn’t give me any meal plans, but it makes it all feel a bit experimental.

I’m used to reading food labels to check for dairy, and more recently for onions and garlic. Now I have to be on the lookout for a much longer list, and avoid anything that has ‘flavourings’ as there might be nuts or citrus there. I’ve come to detest ‘flavourings’ already- it meant I couldn’t have any sauce with my chips. I can’t have ketchup because of that tomatoes, salad cream because of the eggs and HP or BBQ sauce because of the ‘flavourings’.

The thing I’m finding hardest at the moment is the lack of coffee. I’ve been getting bad headaches, and finding afternoons particularly difficult. I struggle with fatigue because of my hEDS, so I think I relied quite a lot on the caffeine to keep me going. I’ve ordered some caffe d’orzo- barley coffee- that I drank sometimes when I lived in Italy, so hopefully that’ll help a bit. I’m getting a sort that I can use with my coffee machine, so I’ll be able to go back to the ritual, which I think is a big part of what I’m missing. It’s not actually coffee, and it’s caffeine free so it’s fine for my diet. 

As I’m only three days in (gosh it feels longer than that) I’m not really seeing any benefits. I just have to keep hoping that I’m on the right track with this, and that it’ll all be worth it in the end.

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Low Histamine Diet

On Wednesday, I shall be starting a new diet. I’ve been seeing a dietician, and they’ve put me on a restriction diet avoiding foods that activate histamines. The things I’m going to find it hardest to avoid are coffee, tomatoes, eggs and chocolate. There are a whole host of other fruits, vegetables, meats, nuts and miscellaneous things I have to cut out too. The plan is to restrict like this for four weeks, then gradually introduce the cut out foods to see how I react.

I had been expecting to be put on a low FODMAP diet, so I’d been doing lots of research on that, so I wasn’t prepared for what I have to avoid. It took a while for it to sink in, but I’ve been meal planning and I think I’ve managed to engineer a bit of variety into what I’ll be able to eat (spoiler alert: lots of chicken).

For the duration of the restriction, I essentially have to act like I’m allergic to the foods I have to avoid- I cannot eat anything that contains them at all. I’m well versed in reading labels to check for things I already avoid, but I’m making a few copies of the list of foods I won’t be able to eat to carry with me. I’ve also stuck one up in the kitchen to make sure I don’t eat anything by accident.

It’s going to be challenging, and I’m going to have to record everything I eat. I’ve been doing a meal diary on and off for a few months, but now I’ll really have to stick to it. I’ll be writing about how I get on, but please bear in mind that this isn’t a guide for how to cut out histamines- I’ve got a specific list from my dietician and I’m also continuing to cut out other things that I know I react to, and I was told not to restrict without medical supervision.

Neurally Mitigated Syncope

Last October I was diagnosed with a form of Dysautonomia called Neurally Mitigated Syncope. It’s also called Autonomically Mitigated Syncope, Vasovagal Syncope and Reflex Syncope, just to make things complicated, but all four terms refer to the same condition. I had thought that I might have POTS, which is common with EDS, but some of the specifics of POTS didn’t seem to match what I was experiencing, but the syncope makes so much sense.

I’ve been feeling dizzy quite a lot of the time, and my GP referred me to a neurologist, who scheduled me for a tilt table test. The wait for the appointment was about 8 months, but I’m used to long waiting lists now. I’m glad I live in London, as this is the centre I’d have been sent to wherever I was in the country.

My tilt test was quite early in the morning, and having planned ahead, I actually arrived before the technician did. When everything was ready, she called me in and explained how everything would happen. We talked about my symptoms and when they happen, and she answered all my questions.

I had to lie down on a bed and was strapped to various bits of equipment. There was an ECG, a blood pressure machine and something to measure my breathing. While I was lying down, I had to do various tests to put me under stress to see what my reaction was.

First up, I had to squeeze a rubber ball. This was meant to be for 3 minutes but I could only manage 2 before my hand became too painful. I then had to do various different types of breathing, and have some bloods taken. Then came mental maths- counting backwards in 7s from 300, which is more challenging than you think when you’re under pressure. Finally, I had to have an ice pack on my hand for a few minutes.

Then it was time for the tilt part of the tilt test. I was able to rest for a couple of minutes after the other tests first, and the blood pressure monitor was reattached. Because it was so heavy it had subluxed my wrist and my fingers had changed colour, but I was able to click it back into place. I also stretched my legs a bit as my knees were complaining after lying flat for so long.

Being tilted up was definitely the worst bit. I had to stay like that as long as I could, and the technician had various things they needed to try to get me to faint. For me, it was taking blood. I could feel myself going, and I was tilted back down.

After I’d settled and was able to sit up, I ate some of the snacks I’d brought with me. It was a really unpleasant experience but I knew that going in, so I was prepared to just do my best with everything that was thrown at me so that there would be good results for the consultant to look at. I was fitted with a 24h blood pressure monitor and given some tasks to carry out with it before bringing it back the next day.

About a month later I saw the consultant again, and she explained what had been going on as well as suggesting some things to help combat it. She said that people like me rarely actually faint because we’re so good at mitigating it- sitting down or crouching to make sure that we don’t keel over. She explained a couple of extra measures I can take like wearing flight socks, and making sure I eat plenty of salt. I now carry a little pot of salt with me to add to food when I’m out and about.

Now, I’m waiting on a group session for other people with syncope, to help us understand how to live with the condition. There aren’t really any pharmacological solutions, so it’s all about lifestyle and doing things to make sure you don’t faint.

Please Offer Me A Seat

I’m so thrilled that Transport for London are now doing a week’s worth of publicity around priority seats as part of their Travel Kind initiative. I’m absolutely delighted to be a part of this campaign. The please offer me a seat badge is such a wonderful initiative and I’m so pleased that more awareness will be raised. The please offer me a seat badge is for people with invisible disabilities and/or chronic conditions who struggle to stand on public transport.

I wear a badge because I have a condition called Hypermobile Ehlers-Danlos syndrome. This is a collagen disorder that essentially means I’m too stretchy. While this might make me sound like Elastagirl, it’s not much fun. It means that my joints don’t stay in place very well, and that I live with chronic pain. It also affects other parts of my body, for example my circulation, which means I often get dizzy.

Getting a seat on public transport means that I’m much better able to manage my pain. It’s not just the standing for the twenty or so minutes that I find hard, but also holding onto a pole, especially if it’s above my head. If I can sit down, it means that I don’t have to worry about falling over, or my arm getting painfully yanked about as the tube moves.

You can read more about my experiences here on my blog, where I’ve documented my first experiences with the badge and why it’s so important to me, as well as on Twitter where I write about each time I get the tube or a bus.

Thank-you so much to those who look up and offer me a a seat when I ask, and most especially to those who notice my badge even before I open my mouth. It makes an enormous difference.

Conferencing in Chronic Pain

Recently Ellie Makin Roberts put together a great thread of suggestions for dealing with conferences with anxiety. I’ve been thinking about things I do, consciously or unconsciously, to make the conference experience easier for myself. I have hypermobile Ehlers Danlos Syndrome, and the main issue for me at conferences is dealing with my chronic pain, and tendency to be quite dizzy.

The thing that’s been most helpful and most difficult is sitting down. This sounds like such a simple thing to do, but it’s taken me years to become comfortable with saying that I can’t stand any more. This is particularly difficult at evening events or lunchtimes, as these tend to take place in spaces where there are no or few seats. However, if I stand for about 10 minutes, my feet go numb, which isn’t great. In London, when I’m wearing my please offer me a seat badge, I feel much more confident saying ‘I need to sit down now,’ or ‘can we move, I need to sit down.’ I’m an early career researcher, and so this makes me feel very vulnerable- who am I to ask a senior academic to move our conversation to a seated area? But, this is crucial to me saving enough spoons to be able to go to the sessions I want to for the rest of the conference.

Missing sessions is another strategy I use. Again as an ECR I feel like I need to be at, and be seen at, as many things as possible. However, this just means in practice that I’m absolutely exhausted after a conference. I’ve become much more brutal in deciding what I will go to- usually things that are directly related to my research, or things that I’m particularly interested in. I have to accept that I’m just not going to make it to everything. I did this at a week-long conference last summer, and rested or, e.g. went swimming during the sessions I didn’t go to. More and more conferences are now having quiet rooms, which is a great space for me to go. Otherwise I’d go to a café away from the main action, or back to my room if I’m staying nearby.

I try to drink water as much as I can. Coffee flows freely at most conferences, but I can’t drink too much or it exacerbates my problems. I usually carry a water bottle with me, and top it up when I can. I drink during sessions as well. Remembering to stay hydrated is really important and means I can focus better for longer.

If accessibility is not clear beforehand, I will often email organisers. Conferences are becoming increasingly good at putting access information on their website, or emailing it to delegates in information packs about the event. What I need to know is about steps- I can manage one flight just about, but prefer step free access if at all possible. If the conference is on two floors connected only by steps, I’ll need to plan out my day to make sure I’m not going up and down too much. If you’re organising a conference, there’s a great example of an access statement here.

I now also try to do a couple of other things, which are much more easily said than done. One is eating when I need to. I get quite dizzy now, and the main thing that helps with this is salt. So, I generally carry a box of salted nuts with me, and eat them if I feel a bit funny, so that I can keep concentrating and not worry about fainting. Even if I’m sitting down, I can still get pretty light-headed. I get some strange looks bringing out my box of nuts, but if I don’t eat them, I’d just feel awful and wouldn’t be able to pay attention properly to the papers.

Another is moving around. I think it must have been drilled into me at some point that good girls just sit there quietly, as still as possible. However, I need to fidget. Even now in conference situations. I used to worry that it would be distracting for other people, or that it would look like I’m not paying attention. But now it just hurts too much not to. So far, I’ve managed to stay sitting throughout most conference panels I’ve been to, but I really appreciate efforts to normalise needing to move around. The Medievalists with Disabilities (#dismed) guidelines for example suggest making it clear that delegates can move around if they need to.

Finally, and I think we all probably do this, spacing out. I tend to get brain fog quite badly at conferences, all the moving around coupled with paying attention for long periods of time means few spoons left for general thinking, especially at the end of the day. This means that I’m happy just to sit at a table while eating and might not participate like my usual lively self in the conversation. It’s not because I’m not interested or because I don’t care, but because I just about have enough energy to concentrate on getting the food into my mouth. I like to be with people though, and still feel part of things even if I’m not particularly chatty.

So, if you’re organising a conference, look at something like the guidelines like the dismed ones, and try to incorporate some of the ideas. Some are more difficult and require more time/funding, but others are simple enough- like telling delegates if the space will be accessible beforehand and without them asking. And also be kind. Don’t stare at the person who gets up halfway through a session to stand at the back, or who’s surreptitiously eating a snack. If we can normalise these things, then conferences will become a happier space, not just for disabled people, but for everyone.

#AskStaynton: An Open Letter

Dear Staynton,

Firstly, I’d like to thank TFL Access for the wonderful Please Offer Me a Seat badge. It has quite literally changed my life. Before the badge, I didn’t feel able to ask for a seat on public transport, so I would suffer through my chronic pain in silence. Now I have the confidence to ask for a seat, and on some lucky occasions, I’m offered one by someone who spots my badge.

This is the reason for my writing to you- it seems that very few people know what to do when they see my please offer me a seat badge. You might think that the message is obvious: the person wearing this badge isn’t able to stand up very well, if you’re able, would you mind please offering them your seat. I’m incredibly grateful to all the kind people who have given up their seats for me.

I see so many tweets by other badge users saying that they haven’t got the seat they needed. I’ve experienced a lot of staring and even someone laughing at me when I asked for a seat. You can see the #pleaseoffermeaseat hashtag for my and other people’s experiences- lots of positives, but many negatives too. It’s not just me who’s having issues with people not giving up priority seats, it’s people who wear baby on board badges as well:

Embedded tweet. Text reads: ‘Transport companies need to do more to remind people in priority seats to offer them to pregnant women, the less able and the elderly. Despite wearing a Baby on Board badge, I have found nobody notices and it is quite intimidating asking a stranger to move, especially when people refuse. Felicity, London
I don’t need to tell you the reasons why people might need a please offer me a seat badge. But if you like, you can read the rest of my blog posts if you want to see how it helps me, or also the @CanceronBoard account (detailing their wonderful work and advocacy for people with cancer), @fall_laugh‘s post https://fallingandlaughingblog.com/2017/10/16/my-world/ and @lillianeboulle‘s blog pleaseoffermeaseat.com.

I feel very strongly that TFL should advertise this wonderful scheme. When the trial was running, I along with a few others asked about advertisement for the scheme, and a few posters were placed in tube stations, e.g. Euston, West Finchley and Goodge Street. (See image below). These posters were fantastic for raising public awareness about the scheme, and for telling people not to harass and deeply question those wearing a please offer me a seat badge.

 

Embedded tweet with image of a publicity poster for Please Offer Me a Seat Badge and Card.

I also heard an automated announcement on the District line in June asking people to give up their seats if they saw someone who needed one, but I’m not a regular on that line, and have never heard it anywhere else.

Almost every time I use my badge, I have to vocally ask for a seat. I’m now confident enough to do this, but I know that many badge users are not able to speak up in this way, meaning that they do not get the seat that they so desperately need. I’ve come across so many people who have asked me what the badge is about. While I’m happy to explain, I’m sad that six months after the badge was rolled out across the network, there are still Londoners who use the TFL network every day who are unaware of the scheme.

So, Staynton, I urge you to please consider an advertising campaign for the please offer me a seat badge, or indeed for priority seats in general. I feel that more awareness needs to be raised about those with invisible conditions using TFL networks, as this will make travel in London so much more accessible for people like me. The original posters were wonderful, but I’d also be happy to consult on any further campaigning that might happen in future.

Yours sincerely,

Alex

@BlueTube2016

Standing Room Only: Seating at Conferences

I arrived late to a conference panel. This is very unlike me. Normally, I’m super prepared, I’ll arrive early so I’ve got time to find the room, go to the loo and get a seat. I didn’t manage that today, as I quickly had dinner between sessions so that I wouldn’t get too hungry. I figured this was the best decision, as I can get quite dizzy if I don’t eat enough. 

When I arrived at the session, it was standing room only, and there was almost no room left in the room. I almost turned away and left then, but I really wanted to go to the session, and there was an edge of a sofa to perch on. However, a couple of people standing left, and so there was some movement in the room. By this point, there were people queuing to get into the room, and so I felt I had to relinquish my seat so that other people could get in, rather than them having to climb awkwardly past me. The session had begun by the time I arrived, and I didn’t know anyone sitting down, or I would have asked for a seat. I really missed my ‘please offer me a seat’ badge, which I’d left in London.

I ended up standing at the back of the room leaning against the wall. This was really not ideal- even if I’m leaning against something, my feet go numb after about ten minutes of standing. When I felt this happening, I managed to awkwardly get down and sit on the floor. Sitting on the floor is also not great for me, but between that and standing, it’s the lesser of two evils. I was however in a dress, and there wasn’t much space between the wall and the row of chairs in front. I was also in front of a folding table, with the mechanism digging into my back.

The panel was really great, although I probably didn’t pay as much attention as I would have liked to. There were plenty of other people sitting on the floor and standing, so clearly more people turned up than the organisers had anticipated. Nevertheless, I think that there needs to be some kind of protocol to help people with invisible disabilities get a seat when they need to.

Here’s my list of possible solutions:

  • Get there early. This is something I didn’t manage in this instance, and can’t always be guaranteed. Finding the accessible route to rooms often takes a long time, and is more circuitous than routes with stairs.
  • Pick out panels beforehand and have a personal reserved seat.  This means you have to make all your decisions enough in advance to let conference organisers know. It would also be awkward if you didn’t turn up. Perhaps most importantly, it would out you as disabled, which isn’t ideal in a conference context.
  • Priority seats. Like on the tube, for those who need to sit down. However, these might get filled, as they do on the tube, with people who more obviously need to sit down, meaning that people like me, with invisible disabilities, feel uncomfortable asking others to move. Also, if they’re all already filled, then you’re stuck.
  • Assigned helper. Someone on the conference team who always helps  you get a seat. This might be incredibly awkward, and there might not be resources for this, as the team is often busy making sure people can find the right room etc.
  • Emergency Chairs. Have a stash of emergency chairs in each building/corridor/near each room for those with invisible disabilities if there are no seats left.
  • Something like ‘Please offer me a seat’. As I said above, I really missed my please offer me a seat badge at the conference. I feel comfortable wearing mine all the time, although others might not, so it would need to be a system whereby you could reveal the badge/sticker as necessary, more like the please offer me a seat card. Perhaps something on the back of name badges or cards which could be kept in your purse/wallet.

None of these solutions is perfect, but what I think is most important is finding an answer that doesn’t require disabled people to do extra work- like always being early or having to pick their session before they arrive. For me, I think a combination of the last two- some kind of symbol and emergency chairs- would be ideal. Being able to get a seat at a conference session is an accessibility issue, and one that we need to find a solution to- any other suggestions are very welcome.