Lupus and travel sickness - connected?

[Wendy39]

I have been on a school trip today (I am a Teaching Assistant) and we travelled just 10-15 minutes on a coach each way. I suffered terrible travel sickness as a child and although I did get better for a while - mainly I think due to driving myself as much as possible - I still suffer on coaches and with flying. Today, I just about coped on the way there, but coming back was awful. I have felt sick and dizzy and completely shattered ever since. Here I am, two and a half hours after I got off the coach and I still feel like I could be sick any minute. Does anyone else experience this? Or i am over thinking and it not related to my lupus? Any thoughts on this much appreciated. Wendy

[Barnclown]

Wendy, for sure you're having an awful time with this. I've been predisposed to this since childhood (my lupus is infant onset). Perhaps my story can be useful.

My version has gone through especially bad passages in the course of my 60 years.....but my version of lupus got no daily systemic treatment until just over 3 years ago. So I coped with your sort of symtoms via lifestyle management mostly: ie somehow, keep calm, carry on, learn not to feel anxious, pace my activity rigorously & rest a lot....it has been vvvvv hard. So I vvvvv much feel for you. Fortunately my employers & family found ways to put up with this.

Well, when I was going through one of the very worst phases of this in my late 20s, way before drs recognised my lupus, I was thoroughly investigated by my local nhs ENT. After in depth tests, they diagnosed benign non positional paroxysmal vertigo and blamed in on the spondylosis & arthritis in my cervical spine (another story). They said all I could do was rest and take my the travel sickness prescription meds my gp had me on. In desperation I saw a private ENT consultant who told me these meds taken long term could create the symptoms I was experiencing, and advised I come off them gradually ASAP. A top homeopath (yes, really) in my village treated me during this time. After months, the symptoms settled enough so that I could go to work BUT I learned to do the rigourous pacing of activities & to avoid any extremes of emotion eg excitement or anxiet, and get lots & lots of sleep.

Over the decades, these particular symptoms continued to flare, but at least I felt I could manage them with lifestyle techniques. By the time the nhs finally re diagnosed my version of lupus nearly 4 years ago, I'd had to retire early & become virtually home bound in order to cope with my symptoms generally, but especially with those you're describing. BUT as a result of the inspired treatment I'm receiving from rheumatology, I'm now feeling less predisposition to these symptoms than I have since my early 20s....

so, while you do what works to lifestyle manage this, I hope you'll update your drs & make sure you're observing your symptoms closely: any pattern of recurrence & persistence....and making notes of the full complex of sensations that you get when these symptoms flare (dizziness & nausea yes, but are you noticing anything else along with this, eg pins n needles, numbness, headache, hoarseness etc)...perhaps your drs will think it's time to more deeply consider your treatment plan and adjust it to see if any tendency you have to these symptoms reduces? 2 years on daily Hydroxychloroquine barely made a diff, but low dose Prednisolone tapers were what first helped me most with these symptoms, and then last jan I went on daily mycophenolate, and now we know both these meds (pred tapers & daily myco) can help me manage these particular symptoms effectively (along with all the lifestyle stuff: avoiding anxiety, pacing myself, getting lots of rest etcetc)

Hope something in there is some sort of help

Take care

[Foss]

Hi Wendy 39

Yes I understand exactly how you feel, it's awful and makes travelling anywhere a nightmare. I'm ok if I drive, but of course that's not always possible especially in your position. I never go anywhere without 'travel bands' you can buy them in most chemists and you wear them on your wrists. It works like acupuncture. Worth a try.

Sickness generally is a problem for me and I take Domperidone 3 times a day with back up if needed. That might be a bit extreme for travel sickness but you could try something like 'Kwells'.

Good luck

Foss

[Natura]

Curious, I am going sailing next week and was going to take seasick medicine like bromine. Is that ok to take? Anyone know?

[Wendy39]

Thank you Barnclown, Foss and Natura. I have felt sick on and off today as well, but not actually been sick at any point. Some friends suggested I had a bug but I haven't actually been I'll and I know how I have felt with travel sickness in the past. I today had a reflexology treatment. I have had it two or three times before but not since my diagnosis. I find it very relaxing and today I nearly fell asleep straight away. She told me I was extremely dehydrated and could feel congestion. She Aldo told me my left foot and ankle went red - not a rash but the colouring - at first and ecru ally came back to normal. I've never had that before. Lupus is certainly full of surprises! I think I need to message you Barnclown to pick your brain! I'll be in touch. And Natura - let us know how the sailing goes - fingers crossed you aren't travel sick and can enjoy yourself. Wendy

[Cakelady73]

I've just started on hydroxy this year and for the first time I suffered from motion sickness both on a plane and in a car (when I wasn't driving). Could be a coincidence but it feels linked as I never suffered before x