I’m undiagnosed but possibly have AI thyroid disease.
In 2023 I was prescribed Prochlorperazine to prevent vertigo due to low blood pressure. Just 5mg to be taken as required and that’s infrequently especially as I’ve always had low BP and it’s not a new thing to me.
Recently this medication has made me feel completely brain fogged the next day to the extent I feel I may black out. I took one last night and when I got up this morning I had a moment of …. head spinning blackness with a kind of nightmare thrown in, I stood clutching the furniture for support and didn’t really know what had happened, most disconcerting.
The PIL does say not suitable for thyroid patients although I’m not diagnosed or medicated for thyroid issues I wonder if anyone can advise why it’s not suitable please?
It also says not suitable for use with low BP so all a bit puzzling. I’m aware I should not be driving when using this medication of course and am not on any other regular medications.
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Stills
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I use this medication too and didn’t know it’s not advised for Thyroid patients and no one has ever said anything to me either!
I’m wondering if you have developed something like POTS (Postural orthostatic tachycardia syndrome) that’s not as dramatic as it sounds. It can be that some people’s blood pressure can drop when you stand up and that can happen particularly first thing when you get up.
I was told to drink a glass of water before getting out of bed if possible and to increase the amount of salt I put in my cooking. This seemed to help.
I suggest if you continue to have issues you see your GP.
Thanks for your reply, the hospital dr said orthostatic hypotension which I think is basically dropping BP upon standing. I will read up on POTS thank you. Yes I have read that keeping hydrated may help and try to drink more water, I have bladder issues which doesn’t facilitate this but do make an effort especially in the summer.
edit: the PIL specifically states not for thyroid patients
It never occurred to me that I may have this although I’ve read about it in HU in the arthritis pages I think. I’m guilty of attributing all things to my known condition of Stills Disease but recent years have made me look further. It’s all so complicated especially the thyroid conditions. I’ll start reading about POTS, thanks for the link
I have lichen sclerosus but not a diagnosis of Planus however I do have a torso rash and odd skin growths . Cealiac disease has been ruled out but a post here made me think it’s DH ( can’t remember spelling today) and combined with this new itchy red eyelid rash myosis is a possibility especially combined with this new muscle pain and increase joint pain .
I’m at a loss really and until something gets so bad GP is forced to do more tests I’m just trying to accept it as my new normal. The nurse at my surgery says they don’t accept private blood test results so I’m looking into that as otherwise private tests will be a waste of effort.
It will be two years in February since these new symptoms started and the locum said cancer but that’s been ruled out, thyroid was within range, it’s not an ulcer and ESR is fine although Still’s is seronegative anyway.
At least the weight loss stopped and I’m stable now, thanks for your reply
If you pay for a private blood test (because GP won’t or can’t order that test) and you are concerned about the result GP cannot act on that result but that could be reason for the GP to carry out their own test, so long as it’s something the NHS will do in the right circumstances. If they refused you could ask to record in your notes what the private result was and that your request for NHS testing was refused.
I have ( allegedly) vestibular migraine which cause balance issues, dizziness, disequilibrium, I say allegedly because I dont buy the diagnosis and am seeing a private specialist next week. When my issues started in 2022 prochlorperazine was the first med I was issued with.
As far as I'm aware its more of an anti sickness drug nowadays, used for nausea/ vomiting during a migraine or if undergoing chemo and not for long term use. Its far less prescribed for vertigo. Its sometimes prescribed for inner ear infections like vestibular neuritis but its not supposed to be a long term medication.
Orthostatic hypotension causes BP to drop on standing, like POTS, whereas POTS additionally causes a rapid rise in heart rate and a whole host of other very unpleasant sensations like shakiness, sweating, feeling faint. Both can be linked with a failure of the autonomic nervous system, the body's autopilot, that controls BP, temperature, breathing, digestion, heart rate. All the stuff that goes on that we dont consciously control.
Known as dysautonomia. I certainly have had my suspicions about my symptoms for several years. I have Ehlers Danlos and its very common in people with hypermobility. I will be asking my private consultant next week.
I must say I'm surprised your low BP issues havent been investigated. I think there are things you can do like increasing fluids, eating more salt, wearing compression stockings and medications to control BP is necessary.
I took one at night at I felt a migraine coming and saw in the PIL it can be used to treat them.
Interesting about the salt as once my husband was prescribed medication f or high blood pressure I have reduced our salt intake dramatically, I’ll use more on my meals and see if that helps.
POTS has been mentioned here and I’m looking into it as I do have some gastric issues ( cancer has been excluded) and I’m having double /blurry vision (dry eyes syndrome diagnosed ) . When out in town or supermarkets my eyes can’t seem to cope with everything they see, it’s all like a blurry merry go round. I read something about eyes and brain not communicating and processing visual information quickly enough …. Dizziness is most likely to afflict me in those types of situations and it’s worse if I go out at night in the dark. . If I then have a low BP moment I feel like I’m going to black out.
I do get random cluster migraines but these don’t seem to be associated with the vision issue. I had squint repaired aged 3 which is slowly turning inward again which doesn’t help. Optician said NHS don’t repair them these days so I may have to go private to get this done.
I do have some of the other POTS symptoms or symptoms that could be put down to that but could also be attributed to my known AI RD Stills Disease and I’m prone to blaming that for everything to be honest. It does muddy the waters a bit.
I think it’s possibly AI thyroid issues but TSH was within range so no further investigation.
I’m feeling like a hypochondriac at the moment with all these diverse symptoms and no cause. Anxiety is the worst, like a prowling lion.
Theres a condition called bilateral hypofunction, causes dizziness/ balance issues especially in the dark or on uneven ground. Plus it can also cause oscillopsia which is problems holding a steady gaze when moving or looking at busy environments like supermarkets. It could also be worth exploring the possibility of VM. That gets worse in busy environments. Mine was awful when in the supermarket, my brain got so overwhelmed.
I've had migraines since my teens but never with any balance issues, just the usual aura, visual disturbances then head pain. These days I have balance problems but no head pain. VM can cause silent migraines. Its considered rare by doctors but is likely underdiagnosed.
Thank you. My first migraine wasn’t until my late 2Os and I had no idea what it was and thought I was dying, I saw my family dr after three days and he did acupuncture on me there and then and within a few hours it subsided to just a bad headache. These days they come in clusters every few months but I can’t identify the cause. Anyway thanks for your help I’ll read up on VM
just wondering why you took one at night as I only take the odd one when going out and feel a bit off kilter like I’m listing., Having said that now my thyroid med are optimal I’ve hardly had one.
I took this medication at a time I was told I had a virus. When things got no better I saw a specialist Gp in my practice who said if you take it for too long, it makes things worse. Certainly for a virus I should have been told to take it for a short while - I wasn’t. As it happened I probably did not have a virus. It was simply a presentation of my as yet, undiagnosed hypothyroidism.
Stills I have not done my bio. Originally I thought I was going to get sorted out (how naive I am) and it would be a wrap. Unfortunately things have not worked out that way yet!
I did mostly get over the symptoms for which it was allegedly prescribed in the first place but unfortunately I do get revisitations from time to time. Most unpleasant, as are most things associated with hypothyroidism. Doctors seem to have less than no idea.
Agree totally with you there as my first TSH tests administered out of the blue at 1050 with my mention of fasting or other drug interactions so the result of within range null and void really. I’ve learnt more here than GPs seem to know.
For years I attributed Stills Disease with every ailment and accept that AI conditions attract AI conditions. I do have diagnoses of LS, IC and DC fo example. I think my strange skin growths/lesions maybe DH and I’m researching DM following responses to my post on itchy eye lids. Sorry for the abbreviations but I can’t recall the spellings at this early hour if 5 am.
Difficulty sleeping and poor sleep from gnawing anxiety are I believe symptoms of hypothyroidism.
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