Julesie

15 hours ago, DysautonmiaMatt said:

Sounds like you have some major GI issues. Perhaps digestive enzymes may help. I take them. If you are in EU I would suggest looking up Hertoghe Clinic for HRT. I went to a presentation given by Dr Thierry Hertoghe in the US and he is a genius and has written several books.   As far as flares go that is VERY common. I get them off and on myself so you are not alone. Check out a book by Dr Derrick Lonsdale: Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition  As far as other docs go maybe google them and call their offices and see if they are familiar with dysautonomia.  

Lansoprazole reduces acid in stomach. I have been told by an integrative doc I have seen that you need enough acid in stomach to properly digest food and kill any bad bacteria. He also told me that many times those on these drugs do not have enough stomach acid. I used to get some heartburn. He told me when I do take some apple cider vinegar capsules. This has worked for me every time. You may want to ask to be tested for SIBO.

Thank you...I've tried apple cider vinegar, digestive enzymes, probiotics, prebiotics, antacids, PPI's, homeopathy, gluten and dairy free, low fat, no coffee, HCL with pepsin, Deglycerized Licorice, Pau D'Arco Tea, CBD, Slippery Elm, Oil of Oregano, low fibre, mid fibre, Kombucha...non of it stops these flares.

In the UK you cannot see a private clinician without a referral from an NHS GP first and you have to pay for the appointment. I cannot afford to see anyone regarding private HRT. My husband doesn't work due to Functional Neurological Disorder.

The books sound interesting though.

20 hours ago, Sushi said:

You could ask your GP to do a “poor man’s tilt table test” to check for POTS or neurally mediated hypotension. You can find the instructions online but basically your BP & pulse are first taken after you have been lying down for a few minutes, then after you have been sitting for a minute or so and then standing—every minute for at least 5 minutes, preferably 10. If your systolic BP drops 30 points or more or if your HR rises 30 beats or more, that is evidence to order a proper Tilt Table Test with a doctor who has knowledge of the autonomic nervous system and actually knows the proper way to do a TTT. Unfortunately many TTTs are not done properly and thus don’t reveal the problems. I had several upright tilts during my test, one of about 20 minutes and one that was aiming for 45 minutes but my autonomic nervous system went nuts after about 30 minutes with my blood pressure at 88/80 so the test was stopped as it was getting dangerous. You need that long upright tilt to uncover some of the basic problems. You also need several other autonomic tests along with the upright tilt. Did your daughter have a comprehensive tilt table test?

Well, thank you for your reply! My daughter had a proper test but had to stop after a while because she felt like a 'panic attack' was coming on. Apparently no evidence was found after receiving a test for her reflexes using the knees and elbows.. who knows what any of this means?

Specialist was a bit old and no bedside manner so he might have been 'I know all and you will trust me!' or he might have been correct in his diagnosis?

Technology eh! When it works it's great...

Stick insect? He's very thin, never knew they could be so small. Just thinking about the chonky ones!

Hello everyone, I'm new here today to the forum. To be honest I have been searching the Internet for the past 10 years and getting test upon test from GP's and specialists but no one yet has given me any answers.

These tests over 10 years have been BP/pulse, full panel bloods, thyroid, H Pylori, Coeliac, Lactose, urine, opthalmology, MRI and endoscopy and all came back 'no action'. 

I was referred to A&E (Emergency Room) last week after feeling the worst I ever have. I begged to go after the locum said my chest sounded clear and my bp/pulse vitals were good and static....That's the thing in the UK, technology comes up with perfect numbers and you're well...not quite so.

Hospital tested head CT, chest x-ray, ECG and 'please walk in a straight line that came with the remark 'you'd be drunk in the eyes of the law' 😬 They wanted to rule out blood clots and stroke.

A prescription of 30mg Lansoprazole PPI's was given to me for 1 week. For the past 3 years I have checked into A&E with gastritis, 4 years ago my gallbladder was removed whilst on holiday in France.

Here goes with my symptoms, not pretty by the way....

Dull headache...like everyday, top and back of head, neck pain, head pressure, pain behind eyes, TMJ (jaw pain), nausea, diarrhea, Steatorhea (floating fatty stools), gastritis type gnawing epigastric pain, chills, sweats, vertigo or plain dizzy, blurred vision, icy vein sensations, chest pain (sharp left side), itchy scalp, brain fog, fatigue, anxiety, ADHD/ADD (just diagnosed), depression, memory loss, joint pain, muscle aches, weird taste like ⛽ gas??? Constant throat clearing, tickle cough and hearing loss.

I have lifted weights in the gym for 5 years, I'm 47, female and previously suffered from pneumonia, pleurisy, pericarditis, bronchitis and a burst ear drum from adult ear infection. 'Flu type symptoms have started on and off in the past 5 years. Perimenopausal using a HRT patch...is it working?...couldn't tell you. All the other symptoms mask any judgement on that.

I can walk a few miles to town, go shopping, have a coffee but after a few hours I need to lie down. Overwhelmed and tired to the point that I sometimes go straight to bed. I'm spent, nothing more to give, say or do.

I have read about Dysautonomia, POTs and Ehlers Danlos as a massage therapist (on sick leave self employed) of 9 years and reckon my 21 year old daughter might have Dysautonomia, POTs was ruled out by tilt table a few years ago.

So I take capsules of electrolytes, drink 2 litres water and other beverages, antihistamines, dextrose tablets when needed, magnesium, B,C,D vits, Lugol's Iodine 15%, gluten and dairy free as of a few days ago, rarely drink alcohol, non smoker. Can't eat red meat, beans, cruciferous veg, onions and the like. 

What I don't understand is why this flares up then for a time I'll feel almost normal...but then when it does return it seems to get worse? Triggers like sun, heat, taking a bath after sunbathing the other day put me in bed. Didn't get chance to wash my hair 😒 

I have a GP appointment on the 15th of September for a review of my HRT. They'll see on my notes that I've been in hospital recently and so I want to ask them for a referral to a...Neurologist, cardiologist, gastroenterologist? How do I go about getting to see the correct person. Google for my local area?

Thanks for reading this if you got this far!