Porphyria Support Group
The porphyrias are inherited or acquired disorders of certain enzymes in the heme biosynthetic pathway (also called porphyrin pathway). The hepatic porphyrias primarily affect the nervous system, resulting in abdominal pain, vomiting, acute neuropathy, seizures, and mental disturbances, including hallucinations, depression, anxiety, and paranoia.
Currently my scariest symptom is SVT, Supraventricular Tachycardia. It has actually been caught on ECG several times, they inject you with adenosine to reset your normal rhythm. I only go to A&E if it has gone on for a very, very long time, and the last one was a few days ago lasting five hours and I didn't bother going, for many practical reasons but mainly because as the doctor said, this is going to make you feel like you are dying for x seconds.
I also get intense stomach pains, nausea, feeling as though my whole gut has stopped and being sick if I try to eat anything, intense unquenchable thirst and fluid retention which is worse if I take bicarbonate of soda, probably the sodium. Also intensely itchy skin with nothing to see, worse at night. Insomnia, anxiety, depression etc. I get trembly and sweaty.
Triggers seem to be stress, randomly small amounts of alcohol, female hormones, not eating enough, certain prescription antidepressants, even possibly using a vitamin B12 patch.
I was stupid enough to mention these to a GP, who just ignored me and corrected my pronunciation - how do you pronounce porphyria? I think they thought I meant the serious version where your skin is affected by sunlight. I think mine might be AIP. I have had stomach pain for so long, and always felt as if I was treated as though it was my fault.
I have had some of these symptoms all my life, since menarche, and the heart symptoms for about 15 years.
I find the SVT very scary, and hate A&E.
I am currently experimenting with glucose tablets to see if they work. How much do you need? Also, I am sure that sugar isn't good for any of my attacks, and have read that fructose is particularly bad for porphyria. So carbohydrates and sucrose both break down into glucose and fructose - in the mouth, very readily - so would produce a lot of unhelpful fructose at the same time as glucose? This is born out by my experience, when I was young I would sometimes eat far too much sugary stuff and not enough else, and get intense stomach pains and itchy skin, it really wasn't helping. Now I find it helps to have a proper meal, protein, vegetable, fruit and yogurt, plus some glucose tablets. I don't have much appetite and when I feel stressed find it very hard to eat, especially early in the day, and that might be one of the triggers.
I also get intense stomach pains, nausea, feeling as though my whole gut has stopped and being sick if I try to eat anything, intense unquenchable thirst and fluid retention which is worse if I take bicarbonate of soda, probably the sodium. Also intensely itchy skin with nothing to see, worse at night. Insomnia, anxiety, depression etc. I get trembly and sweaty.
Triggers seem to be stress, randomly small amounts of alcohol, female hormones, not eating enough, certain prescription antidepressants, even possibly using a vitamin B12 patch.
I was stupid enough to mention these to a GP, who just ignored me and corrected my pronunciation - how do you pronounce porphyria? I think they thought I meant the serious version where your skin is affected by sunlight. I think mine might be AIP. I have had stomach pain for so long, and always felt as if I was treated as though it was my fault.
I have had some of these symptoms all my life, since menarche, and the heart symptoms for about 15 years.
I find the SVT very scary, and hate A&E.
I am currently experimenting with glucose tablets to see if they work. How much do you need? Also, I am sure that sugar isn't good for any of my attacks, and have read that fructose is particularly bad for porphyria. So carbohydrates and sucrose both break down into glucose and fructose - in the mouth, very readily - so would produce a lot of unhelpful fructose at the same time as glucose? This is born out by my experience, when I was young I would sometimes eat far too much sugary stuff and not enough else, and get intense stomach pains and itchy skin, it really wasn't helping. Now I find it helps to have a proper meal, protein, vegetable, fruit and yogurt, plus some glucose tablets. I don't have much appetite and when I feel stressed find it very hard to eat, especially early in the day, and that might be one of the triggers.
How do you people get your GP to take your symptoms seriously instead of just brushing them off? You get ten minutes' appointment, and all they can suggest is increasing the dosage of beta blockers. In the past I have waited in A&E for hours with agonising stomach pains, and in the end been sent away with a painkiller tablet.
Is it easier just to demand to see a Haematologist and be tested for AIP? Rather than mess around waiting for appointments to see a cardiologist for the secondary heart symptoms, which for me in the past the ECG's have only been abnormal when I am having an acute SVT attack, but I think they might be abnormal all the time at the moment, but you wait months to see anyone and I feel weary of doctors. GP's don't seem to do ECG's.