I have been diagnosed with POTS, but they are thinking that the underlying cause could be lupus.
I struggle with food so badly.
I am now unable to a meal of even a small size after 6pm in the evening. If I do I am shaking in the night and wake repeatedly flushed. The next day I am tired and tremoring. Or I have autonomic problems and and stumbling around and unable to function. Something odd is happening in the night. I can only eat a handful of food at most in the evening.
I react really badly to garlic and all the onion family. The next day is a write off if I have even the smallest amount.
Yeast and all fermented foods - the next day I feel that I am hungover without having drunk anything.
Even a few sips of alcohol leaves me in a terrible state the next day.
Chocolate is a danger zone too.
I react to high histamine foods and fruits such as melon leaves me with cramps and pains traveling down my legs.
I get sudden attacks where I don’t recognize my surroundings and am gasping for air.
Heavy fatigue where I can’t move my body only my eyes.
I have had symptoms after lifting heavy items that are similar to a heart attack.
I get a burning itching pain in my heart and palpitations that make me cough.
I'm a real heap of fun. Smile.
Some things I have always put down to the POTS. But wondering if it’s something else too.
Any help would be so welcome
THANK YOU
Written by
emma_louise
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Wow, you've just described my first two years after being diagnosed with Pots and Lupus .
My chest pain was sometimes hear rate related but the pain I got after lifting or moving in just the wrong way was either inflammation or nerve pain.
Lupus is not widely understood and POTS, well thats a minefield for some doctors. They just don't get it.
Where are you being treated for POTS?
Are you on medication for POTS?
What lifestyle changes have you made?
What is your fluid intake like?
I live with EDS type 3, POTS, Lupus, low Igg, recurrent pericarditis and UTIs. Many in my family have POTs but I'm the only one with Lupus too, although the other potsies have a range of A.I disease.
Interestingly, once I got treatment for lupus my POTs did improve. I'm also being investigated for mast cell.
If I can be of any help I will. But can you answer any of those questions so we can get an idea of where you are with your pots and how we might help?
I presume you've had tilt-test, holter monitor, 24hr BP, ETT, ECG and catacholamines?
I had very similar symptoms to you 4 years ago. Autonomic dysfunction and huge issues with food. It really is awful. I had histamine intolerance and vertigo unable to stand up, facial flushing heart rate going up and down.
What helped my symptoms was a strict low histamine diet - only freshly cooked fresh foods. No ripe fruits no tinned or packaged foods. Foods rich in anti inflammatories - fresh herbs ginger turmeric berries. It helped a lot plus pro biotics if you can tolerate them. I know it’s very difficult but there are websites with tips on histamine intolerance.
I’m working again now and don’t have any symptoms unless it’s food related.
My doctor prescribed anti histamines which helped so much. Although I don’t take them now. Maybe worth asking your doctor about anti histamines to see if they will help.
Thank you for responding, and for your kind words.
I have had all the histamine mast cell checks and they were negative. Histamines didn't help me, nor did Ranitidine. So I'm left thinking that histamine has an inflammatory effect which is triggering something else. I followed the gorgeous late Low Histamine chef for years thinking histamine intolerance was what I had. But as I have gone along tests have uncovered more underlying things. I also have EDS type 3 . They have said this is the cause of the POTS. But it feels like something else is going on.
There are things I still can't answer on POTS forums. POTS suffers can tolerate garlic and onion and small quantities of alcohol. They can eat in the evening actually better than during the day. I feel as if I’m being poisoned at times. Food doesn't just fatigue me but it sends me into a weird toxic state. My legs swell and I have a red pimply rash on my face that they have said is rosacea.
I’ve had all the POTS tests and an ECG. I really need to keep pushing as everyday I'm breathless after the smallest of tasks. I was told this was low blood pressure but I'm wonder if it could be something else too. I am treating my POTS with fluids and salt but have read that salt is a no no in the AI world so just now using fluids. I am due to be medicated for the POTS in my next consultation.
It may be that your heart rate is increasing to compensate for all the blood rushing to your stomach to start digesting your food, which would cause a drop in your central blood pressure.
If you're not yet medicated for POTS one of the best things to do is to get some grade 2 compression stockings because this stops the blood pooling in your lower legs. They must be grade 2, grade 1 won't provide the compression needed. You can get them correctly measured and on prescription. They really help me. Just like wearing a pair of long socks!
I wasn't able to eat more than a few mouthfuls before collapsing 4 years ago but I can eat a whole meal now easily. I avoid a lot of carbs though . Also 4 years ago I could only stand for 1min 6 secs before collapsing. I've had to totally retrain my body. I was in hospital for three weeks being poked and prodded. My initial presentation was shortness of breath.
When I eat I also sit with my legs crossed on the chair if I can. I can't tolerate garlic at all and only small amounts of onions. Some food set my lupus off and that in turn sets off POTs. For me the key to managing POTs is hydration, excersise and medication. I do add salt to my diet. Its a cost vs benefit balance. Yes, too much salt in AI disease is usually frowned upon because of the kidneys but if we can't be upright and mobile then we will just decondition. I get my sodium checked and have been told that its never been too high, just the higher end of normal. I take a dioralyte if I am particularly potsie in a day because it replaces any electrolytes.
You didn't say where you're being treated for POTs but the autonomic unit at the National Hospital for Neurology and Nervous diseases, which is the national centre for POTs has some really good online patient information, as does POTS UK website.
Totally agree with all you have said. I am not nearly as severe as you in terms of the autonomic dysfunction. Those compression socks do help (salt too) and I am convinced the new sports compression socks help my exercise tolerance. Love it that the new medical grade compression socks look and feel great. K
Welcome to the LUPUS UK HealthUnlocked community. We offer a free information pack which you can download or request at lupusuk.org.uk/request-info...
For people with lupus, some doctors suggest avoiding garlic as it contains substances (allicin, ajoene, and thiosulfinates) that can potentially increase immune activity. However, according to Donald E. Thomas Jr. in ‘The Lupus Encyclopedia’;
“…I do not see enough evidence to make this recommendation myself. In fact, garlic is actually used by some alternative and complementary medical practitioners to decrease inflammation. In addition, there is no medical evidence showing increased lupus activity due to eating garlic.”. To learn more about lupus and diet, read our blog article at lupusuk.org.uk/diet-and-hea...
Have you seen a specialist for the symptoms you experience on a daily basis?
A few of the symptoms of POTs i.e. brain fog, tiredness/weakness, shortness of breath and headaches are also those related to lupus. To find out what criteria and tests are needed to make a diagnosis of lupus, read our blog article at lupusuk.org.uk/getting-diag...
Thank you so much. Garlic and the entire onion family really aren't an option. They are my utter superwoman kryptonite. I'm a bad way the next day if I have them, even if in very small quantities. And the trigger something symptoms that last days. I have seen two autonomic and cardiovascular specialist - who contract each other, two Gastroenterologists - who also contract each other. I really want to see an Endocrinologist and Rheumatologist but am having problems being referred. London is a tricky beast with referrals. I have even had to pay for an iron test in this journey. Oh joy.
Get in to see a good Gastroenterologist and have them run a gut "biome" check on you. Very possible that you have a disrupted system to the point that the symptoms go far beyond your belly. Latest research has revealed that many autoimmune diseases are affect by or have an extremely close relationship to in balances in the biome. This doesn't mean taking probiotics. This has to do with the trillions of bacteria, yeast, viruses, fungi and other microorganisms that keep us healthy and well. Serious disruptions, infectious or in and of themselves, can cause total havoc beyond what any one thing or diet can correct. Get an appointment, provide all of your symptom and food reaction documentation and ask for them to run your stool. Case in point, I was told for 10 years that I had undifferentiated inflammatory bowel disease which, 7 years later, they blamed on both my Lupus and my Ankylosing Spondylitis. Turns out, yes, my gut was a mess but it was because of a 10 year infection my body had been fighting. An overgrowth of a deadly bacteria. If we had caught it sooner, my food intolerances probably wouldn't exist and both my autoimmune conditions would have been milder and, theoretically, more responsive to treatment.
So, get the facts on your belly first. Then work from there. I swear it makes all the difference in the world.
I have been fitted for and have the glamorous compression tights. Love them. They really help the pains in the veins too and the heavy leg feeling. While eating I cross my legs too and have learnt to jiggle my legs too. As soon as I have eaten I often go for a quick walk.
I have just seen a gastroenterologist and she believes I have severe gut disruption. So I am being referred to a team to address that. Really helpful to know about biome I will definitely mention it. I'm still pushing to see a rheumatologist.
I have was under Prof Mathias in London who is one of the leader for POTS and Prof Aziz again a leader. But my insurers pulled out leaving me with the bills and having to go the NHS route. My new autonomic guy says now I don't have POTS, despite Prof Mathias diagnosing it in March following 2 days of tests. My new gastroenterologist said Prof Aziz was wrong in diagnosing rapid gastric emptying too. So the NHS folks are rejecting the diagnosis's of the private team. Im so scarred Im going to get discharged from the autonomic clinic. It's all so tiring and such a lonely journey.
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