June 5, 2015 at 12:19 am #845
I have alot of symptoms…zero temperature regulation, low blood pressure frequently around 88/58, sweating at times….like ALOT of sweating,IBS, fainting, exercise intolerance, very bad idea to walk after eating, asthma…also I have heart stuff. A-fib, PACs, avrnt. Have had a few cardiac ablations…nothing is better. Had tilt table test that ruled out POTS but still nearly fainted. Tested for mast cell disease but all results normal. Very frustrated. Dr said i should try zyrtec and zantac but i feel no better and no worse. Well. Now what? Anyone here been diagnosed with mitochondrial disease?June 6, 2015 at 11:03 am #5508Dr. DianaKeymaster
Hi lolo, I don’t think you are alone, actually. Rather than jump to mito disorders, I think someone needs to back up on your case and investigate further (I also think that the vast majority of us do not have mito disorders — biopsies are negative and no genetic inclinations show up. We also do not present like “real” mito disorders, and our symptoms can recede. This doesn’t happen to this degree in “real” mito disorders.) So, backing up, I wonder if your TTT was done correctly and if so, if the criteria for POTS may be too strict for someone who has had ablations. Of course I wonder about symptoms of high (or low) intracranial pressure, disorders of blood coagulation, and autoimmune disorders as possible problems for you. For Z/Z, I’d like to be sure that you took a double dose for at least 2 weeks? Most of us with histamine problems improve about 2 weeks into double dose treatment, BUT WE ARE NOT WELL. Histamine is likely only part of our problem. It’s great that you don’t have mastocytosis. Although some people are getting a diagnosis of MCAS – mediator negative (tests are normal), I guess you may have read how I believe this brushes off the other histamine producing cells and puts blame on mast cells — which may not be correct. I think we need to dig deeper, does that make sense? Gentle hugs…June 6, 2015 at 2:50 pm #5510
Thank you for your reply. Yes, I believe they need to dig deeper also but I fear they are running out of things to test. I have tested normal in every single test I have had…which is a lot. Oddly enough, the only tests they find stuff are the CT scans. Atelectasis, retroperitoneal and portal adenopathy and other weird stuff. This is day 11 of the H1 and H2 blockers. I will stay on them until at least my next Dr appt in two months.June 7, 2015 at 2:10 pm #5513Dr. DianaKeymaster
That sounds like a good idea. It took a full two weeks for us to notice much difference with antihistamines. It didn’t CURE us, but it helped with orthostatic intolerance. It did not eliminate POTS, but it helped us function with lessened symptoms. I was thinking about your tilt table test — just like propranolol should not be taken before the test (it masks the response), I wonder if your ablations are diminishing your response? If you have the same pathology causing your symptoms, even if your TTT was negative, I wonder if the pathology is still there, causing your illness? The TTT would not be a reliable way to see if the pathology is still there in your case (I strongly suspect it is, or else you wouldn’t have felt faint, right?) In your case (and others, I’m sure), the arbitrary “30 bpm’s” should likely be taken with a grain of salt (great pun). Who is to say that someone with symptoms and a 29 bpm increase doesn’t have POTS? Common sense is getting lost sometimes, I fear. Fingers and toes crossed for you!June 9, 2015 at 8:06 pm #5521
I have alot of symptoms…zero temperature regulation, low blood pressure frequently around 88/58, sweating at times….like ALOT of sweating,IBS, fainting, exercise intolerance, very bad idea to walk after eating, asthma…also I have heart stuff. A-fib, PACs, avrnt. Have had a few cardiac ablations…nothing is better. Had tilt table test that ruled out POTS but still nearly fainted. Tested for mast cell disease but all results normal. Very frustrated. Dr said i should try zyrtec and zantac but i feel no better and no worse. Well. Now what? Anyone here been diagnosed with mitochondrial disease?
I underwent a test through Dr Sarah Myhill which showed I had a mitochondrial problem. It showed I was deficient in many vitamins (mainly the variety of B vitamins) and minerals. I couldn’t understand this as I had been eating a very good diet – but this, I suppose is what happens when your vagus nerve is stuffed and your digestive system isn’t working properly.June 9, 2015 at 8:09 pm #5522
Also, I spent years sweating profusely, over my head and neck, following my backwards fall. Trouble is you sweat out a multitude of minerals when this happens, which aren’t replenished by drinking water alone.June 10, 2015 at 12:15 am #5526
Wow Barbara! So are you mostly better now by taking vitamins? Was that the only test you had for mitochondrial dysfunction? The sweating is awful….I have it mostly on my head face and neck. Do you also suffer from dysautonomia?June 10, 2015 at 8:39 pm #5528
Well, it’s been a long journey and it’s a combination of many factors that have each contributed to a better standard of well-being, such as:-
Philadelphia collar (original type) 24/7 to help improve and maintain proper circulation of CSF around brain and spine
Support hose to improve blood circulation to rest of body (helps reduce blood pooling in the legs)
Adequate salt intake (to help maintain blood volume and produce appropriate stomach acid – has stopped gastric reflux)
Tried to reduce pain and fatigue by developing coping mechanisms, such as
Sleeping sitting up
Eating smaller meals (little and often, is better) the least processed food the better
Planned daily workload as follows
Delegate labour intensive tasks,
Alternate physical and sedentary work (half hourly)
Plan to get important jobs done first (then it’s less important if the rest doesn’t get done – reduces stress)
Recognise when ‘best time of day’ is for doing tasks, listened to body
Avoid ‘squeezing myself dry’ energy-wise
(There’s loads more to this section, this is just a sample)
Mitochondrial test highlighted areas of deficiency, mainly B vitamins but some minerals too, so multi-vitamins and multi-minerals helped
Coenzyme q10 level check showed I needed this also to help improve muscle function, which it does
Vit D level check due to being mainly housebound, showed levels were low, so supplement eases some of pain
Pituitary check showed Growth Hormone deficiency, so on daily injections
Neuro-ophthalmological check showed swollen disk – sign of raised intracranial pressure, so now taking Diamox
Massage twice weekly, some lymphatic drainage – to help speed upon body’s capability of ridding itself of toxins
I’ve probably missed some but basically every little helps, lot’s of small improvements contribute to an overall big improvement!
Yes, I had features of POTS.
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