It never ends....

[strawberrylips]

Anyone affected by dizzyness, I've had it on and off for years, feels like I'm walking on a ship today..

Your experiences would be welcomed

[Hidden]

Yes I have this - don't know the cause as told by neuro that it's not vestibular in my case. I am told it's because neuropathy has given me propriception issues that mean my feet doesn't send right signals to my brain. Still not sure of this 100% but I'm sure it's part of my autoimmunity.

[1toffee1878]

Yes I have bouts of dizziness or vertigo. Doesn't last long but often just presents itself very quickly. I haven't been diagnosed with lupus but do share so many symptoms and take so many meds that I do rattle when I walk. Hope the dizzy spells don't cause to many problems.

[Barnclown]

Yes...many of us on here experience dizziness of one form or another.

My version has been a 24/7 prob since my 20s. Before my infant onset lupus diagnosis was recovered in my 50s, 5 years ago, NHS investigations came up with various diagnoses/theories but no effective treatment...so I just lifestyle managed it: when at its worst, I'd spend months off work sleeping a lot while barely able to walk....after that I learned to pace activities vvvv carefully, stay well hydrated, get lots of sleep etc etc. But once treatment for lupus began, the meds in my treatment plan did damp down my predisposition to dizziness (specifically:pred + myco) and now it's usually at a much lower level unless I'm flaring or have a migraine or an infection etc. Apparently my version of dizziness is due mainly to vestibular neuritis + Dysautonomia...

So, if you haven't already, do tell your GP about this now. And also your lupus consultant. It's important this is on your records...

🍀🍀🍀🍀 coco

[noonoo57]

Hi, I also suffer with dizzy spells, they just suddenly come on and I need to hang on to something to steady myself. My doctor prescribed Stemitil but I only take it now when I feel it could get worse, I don't want it to go into a full blown vertigo attack as I also am on Metoclopramide for my Gastritis to move the food out of my stomach quickly. The doctor said it was the only one not to interact with my other drugs but I am not so sure. But nothing worse than having a full blown vertigo attack as coco will tell you, she is our Guru.🍀🍀🍀🍀😇

Make sure you mention it to your GP and consultant for your records and they may give you something for it.

All best.

Nicola X

[Barnclown in reply to noonoo57]

hi noonoo: metocloperamide...just googled it cause hadn't heard of it (i was given domperidone)...thanks for mentioning it! hope it is helping!🍀🍀🍀🍀

[strawberrylips in reply to noonoo57]

Thank you for the information and your reply, its very complicated Lupus and its manifestations, isn't it?

[strawberrylips in reply to noonoo57]

Not sure what triggers my attacks, although I haven't had a huge spinning one yet...I had this before almost, over five years ago, but have been relatively free from them since then..its like walking on a ship..

Thank you anyway for your reply

[1985mum in reply to strawberrylips]

I think I know the feeling you mean...it's more like jetlag than spinning? Like the day after you've been on a plane or boat trip. I get this often, usually when I'm really fatigued and sometimes have to grab onto something to steady myself. Not a nice feeling.

[noonoo57]

Hi coco, the GP said I couldn't take the domperidone as it interacted with the Stemitil and my Amitripyline but I try not to take either at the same time. It's an anti sickness really but as with the domperidone it moves the food quickly and since I been on it three times a day before meals along with 40mg Omeprazole and the 300mg of Ranitidine at night my stomach pain is so nearly non-existent only very occasionally I have pain in that area. The only issue will be when I go onto, if I go onto (holding off) the Methotrexate it interacts with so many of my drugs and supplements.

You can't take a medication without some issues being caused elsewhere can you, really a pain in the proverbial.

Hope you are well, you know what I mean.

Take care coco, our Guru no.1

Love Nicola. 😎X

[Barnclown in reply to noonoo57]

Am blushing Nicola 😊...you're our guru too‼️ Everyone brings so much to this wonderful forum....I'm constantly learning from you all 👍👍👍👍.

Thanks for explaining about these meds: am vvvv interested...you're so right about these interactions & sideffects making life complicated...so, although I've gotten along ok with domperidone in the past, am vvvv glad to know of an alternative

Am doing pretty good thanks 😉😘🍀

[noonoo57 in reply to Barnclown]

Hi coco,

Yes the forum is a great help, I sometimes just read and not comment as not sure I can add anything or what I say may be silly.

The GP said the Metoclopramide is used as a motility drug as it moves the contents of the stomach out quickly so the acid doesn't have the time to make its way back up or irritate the stomach. I amazed how well it has worked as I had a pain which was being investigated for 2 years and it then turns out to be my gastritis causing the pain. It's taken about 4 weeks to be nearly pain free so I think if the Domperidone is not working as well it may be worth a chat to your GP.

On another note how is the wildlife in your neck of the woods. My dog sat for ages watching the deer when she went down the fields then suddenly spotted a rabbit and off she went, natural she's a springer always chasing, never caught anything thank goodness, couldn't bare that, I get upset when a bird is injured, sometimes my kindness kills them, I should leave alone.

Glad your ok at the moment.

I wish you well.

Take care Nicola. Xx💐💐💐💐💐💐😘x

[Barnclown in reply to noonoo57]

👏👏👏👏Yes, what you've told us + what I read on wiki about metocloperamide mean it sounds like a good alternative if domperidone ever fails me. Like you, I'm diagnosed with chronic gastritis...haven't had to use domperidone for several years because all the antibiotics I've been on have proven that pockets of sepsis in my stomach are also playing a part in my gastritis...strange but true (and this can't be heliobacter pylori because biopsy came up free of that).

Love the thought of you & your springer out there enjoying the wildlife...ours is doing fine now we're getting some sunshine finally 😉

🍀😘🍀😘

[AngelaMorrell]

Hi, I am not so much as having dizzy spells as I tend to have these regularly even before the Lupus diagnosis, but now I find I am extremely clumsy, to the point at lunchtime today I almost stumbled into the path of an oncoming car. I find that when I get my body moving it takes an inordinate amount of strength to change my direction or even to stop moving at all. I don't know whether it is because I am so tired or what, but it can be quite scary.

[Barnclown]

Hello again strawberrylips...thought this link might help you...it's to the autoimmune inner ear probs section of a great website run by an organisation devoted to vestibular disorders including dizziness:

vestibular.org/autoimmune-i...

Take care 🍀🍀🍀🍀 coco

[strawberrylips in reply to Barnclown]

Thank you for your reply, it is a great help...

[Barnclown in reply to strawberrylips]

😘🍀

[growingnuttier]

I've also had dizzy spells. Sometimes bad enough that it's as though the floor suddenly moves. Fortunately I've only fallen twice in the 20 years since I was diagnosed. But I do bump into things a lot, and have plenty of bruises. When out I try and walk close to something, just in case. I know I get very low blood pressure which will obviously contribute to light headedness, but I don't know if it's the sole reason. I agree with some of the other replies, keep hydrated. Good luck

[noonoo57]

This is sounding all to familiar, the unsteadiness looks like we all have this. I thought it was just me but growingnuttier, angelamorrell and strawberrylips also walk unsteadily, not sure if it means anything it's slightly better with the Hydroxychloroquine before that I was scared to go out. I never walk near the edge of the pavement if I can help it. In the house I just loose my balance knocked myself a few times and yes same as nuttier bruises. Since on the steroids I get more bruises.

One question to all you ladies do we also have in common varicose veins ? Or is this hereditary from my mother.

Take care all, love Nicola 😎XxxxX

[mousey1]

I have had problems with dizziness on and off for years,but after having a bad chest infection in Feb and was in bed for about a month.I have balance and dizziness since then, everyday some days I do get pain or fullness in my ear.I have had a mri scan where luckily they found nothing,so have a appointment for ENT specialist at the end of August.I am fed up with it and became agrophobic,I have just started getting out again not often though.

[sharon53]

Hi

Yes I do have had it about 5 times since February my GP referred me to the ENT clinic which I went to last week they are doing a MRI scan to check the Inner ears and Balance clinic to give me a balance test they think that my Lupus is the main cause but will write to me after I have had the tests done the GP has given me Cinnarizine tablets to take as and when I need them.