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Hi, I know a little about allergies and MCAD as I am trying to figure out what is going on with my own body at the moment. IgE is the immunoglobulin involved in classical immediate hypersensitivity reactions (such as hay fever, peanut, bee sting etc) it is different to the pathways involved in other allergies such as contact dermatitis from washing powder. People with severe immediate allergies would be expected to have high IgE levels. People with MCAD would normally have normal levels of IgE as MCAD isn't a proper allergy - it is a reaction like an allergy but without an allergic trigger. This can be complicated as some people have both immediate allergies and MCAD so their IgE would be high. RAST testing will detect specific high IgE to a particular allergen. For example if you were highly allergic to peanuts your peanut specific IgE would be high even though your total IgE might not be much ablve normal. People with MCAD but no true allergies will have normal / negative RAST tests. Pin pricks becoming itchy red spots - that is a classic dermographism response to the pressure on your skin. The pressure has caused mast cells to degranulate and release histamine which in turn causes the itchy wheals. Sorry I can't answer your overall question but I hope these little bits of info make sense to you. Flop

Interesting, there have been other historical descriptions of what was probably POTS in the medical literature too. During the First World War it was called "Soldier's Heart" or "irritable heart" it has also been called "Da Costa's syndrome" and other names that I can't recall off-hand. Interesting to see though that these researchers had discovered a way of testing for the problem and a mechanism for supressing the reaction. Flop

I find that I might do something silly like pick up a knife instead of a pen, but then I will look at it and laugh because I know it isn't what I wanted, then put it away and get out a pen. Yes you might accidentally pick up cleaner but you would look at it and know that is is not what you wanted, I don't think that brain fog would make you drink the cleaner. As you said you already double check things. We are probably less likely to make mistakes than others because we know we get brain fogged so we are extra careful. Don't worry about making major mistakes. Other than driving a car where a mistake such as turning the wrong way could cause a crash and injure yourself, other drivers and pedestrians. I have a strict rule with myself - if I have brain fog I don't drive. If I have to go somewhere urgently whe I have brain fog I either get a lift or call a taxi. Flop

Wow, the situation re service dogs in the UK is very different. They have to be trained by a one of a handful of specialist services. There are also strict rules about who is eligable for a service dog - blind, deaf, epileptic, severe limited mobility. I would love to have a dog that could pick things up from the floor, load the washing machine and especially stay with me when I collapse / bark to get attention if I was hurt. Flop

If it is an old glucose meter, please check that your test strips are in date (and have been kep sealed) and that the machine has been calibrated with the test solutions. Flop

I would contact the team at Mayo and ask when they want you to stop the meds. I suspect that you would have to wean off the Lexapro a few weeks before testing but you might be able to stay on the metoprolol until after you have flown out to Mayo (consider going a day early). Flop

Hi, the "slow sodium" I had were on prescription, but here in the UK we need prescriptions for many things that you guys can buy from a pharmacy in the USA. Flop

I do best on a high protein diet too. I am supposed to be "grain free" (ie no cereals, no flour, no rice) and dairy free. I have given up on the dairy free as I am addicted to de-caffienated iced lattes! For breakfast I will usually have eggs or meat and some fresh fruit, or a fruit smoothie. Main meals are a generous portion of meat (I rotate beef, poultry, lamb and fish over a 4 day cycle) with a large helping of fresh vegetables or salad. I avoid potatos, rice, pasta etc as they cause me to get very bloated and also I get worse POTS symptoms after eating those sort of carbs. My diet is not Atkins because I let myself eat as many calories as I need (Atkins is a low calorie diet to cause ketosis) and I make sure that I get enough carbs from fruit and veg to balance the high protein. I try to buy organic when I can or from local farm shops so that I know that the animals havent been given lots of antibiotics and that they haven't used lots of pesticides. Mostly organic food just tastes much nicer than factory-farm food. Flop

The Mirena IUS does contain hormones - it has levonorgestrel (a progesterone). It is released into the uterus where it acts directly. A small amount is absorbed into the blood stream but it is much less than with combined pills, mini-pill (progesterone only pill) and a lot less than with the Implanon implant. Many people who get side effects from mini-pill or Implanon find that they don't get those systemic side effects from the Mirena. However if anyone has to be totally hormone free for medical reasons or personal choice then the mirena is not for them. Flop

I felt a bit unwell after my allergy injection this week. It seemed to be POTS not allergy but I thought I'd better tell the nurse. She was shocked to find my BP was 170/115 with HR 143. She seemed to think those numbers were impossible and wanted me to go to the ER. I reassured her that it was normal for me and at least meant I wasn't having an anaphylactic reaction! Flop

I had salivary testing for cortisol and DHEA levels last year (4 samples over a day). My results showed that I had moderate to severe adrenal fatigue. The thinking is that when my body was stressed by POTS my adrenals would put out a surge of cortisol and adrenaline to cope with the physical stress. Eventually the body can't keep up with the demand for cortisol and the adrenals can't cope so your cortisol levels drop. I am taking various supplements including Siberian Ginseng to help to support my adrenal glands. My practitioner told me that if my adrenal fatigue was worse that I would have needed to take steroids. Flop

I have a medtronic Reveal device in situ too. Mine is a small box under the skin (same size as a USB memory stick) with no wires or connections to the heart. Mine is set up so that it records a loop and any time up to 40 minutes after an event I can activate it using a small hand-held box. It then stores the ECG of the event until I can go to the hospital and have it downloaded. I actually am on my second Reveal device (when the first was in situ i didn't have any blackouts at all!). I have it not because of POTS but because we have a family history of Hypertrophic Cardiomyopathy and one of my relatives had a cardiac arrest (fortunately she was near an off-duty paramedic who resuscitated her). My cardiologist was concerned that we shouldn't assume that my syncope was "just POTS" and make sure that nothing else was going on. The transoma device didn't exist when I had my reveal implanted, if I were to have a device now I would be keen to have a transoma as the continuos data analysis allows better understanding of the daily heart rate changes. Flop

Hi Green, the milkshake was especially to test for low BP after eating. They had me fast from 10pm (but I could drink water as much as I wanted). In the morning I had a 10 min TTT whilst fasted. Then they put the table flat and had me drink the milkshake through a straw whilst lying flat. Then I had to lie still for 1 hour then they repeated the TTT for 10 mins again. The fasting/meal test didn't actually show any difference in me. I suspect that by the time I had waited for 1 hour that the effect of the milkshake had worn off. I also had a 24 hour BP monitor whilst I was on the ward. I had to check my BP before meals and every 10 mins during and after meals. That test showed a marked drop in my BP only 10 mins after eating. Flop

Thanks for the explaination Jen, I hope it works for Ava. Flop

It is good that you have a supportive PCP, to be honest with you I think that your PCP will be the most important doctor. I hope that the "possible" cardio is able to help you and has experience with POTS or is willing to read and learn for you. Good luck, Flop

The salt tablets that I used to take were called "slow sodium". They were very smooth round pills that tasted of nothing and were easy to swallow. They are a special slow release so the matrix of the tablet actually passes through you (looks a little like white honeycomb) and slowly lets the salt into your system. They are 600mg tablets and I used to take ten tablets at lunch time every day. Didn't cause any nausea or stomach upset. Flop

In the UK there is no-way that you could have allergy shots if you were taking a beta-blocker. They made me wait 2 months from getting off the BB before I was allowed to start my desensitization shots. The immunologist also wouldn't give me an epi-pen whilst I was on a BB he was worried that i would have unopposed alpha stimulation and shoot my BP sky high and stroke out. However I think he was really over reacting. My EP said epi would be fine so long as I called an ambulance immediately so I could be closely monitored. THey did give me an adrenaline inhaler whilst I was on the BB. Flop

whilst a lot of EPs end up looking after POTS patients we aren't really an EP problem. I guess we get referred to EP because people think that our tachycardia must be an arrhythmia (abnormal heart rhythm). EPs specialise in mapping the electrical system of the heart and ablating abnormal pathways (like in people with Wolf-Parkinson-White syndrome) and the medical treatment of SVT and VT. Dr Grubb is an EP but must have learned a lot about the autonomic nervous system. You could see a non-EP cardiologist (many of us do) but you would probably need to call lots to see if they either had experience with POTS or were willing to learn with you. I was diagnosed by a cardiologist at my local hospital - he already had several patients with POTS so knew a bit about it. I also see an EP but he is not interested in my POTS just my syncope and my reveal device. The other speciality who look after POTS patients are neurologists, the most experienced would be autonomic specialists. I managed to get referred to a specialist centre in London where I see Professor Christopher Mathias who is a professor of neurovascular medicine and also heads an autonomic unit. I have cut & pasted the bit below from the University website. Do you live near to any of the doctors listed on the DINET physician list? Some people chose to have just a pcp locally and travel occasionally to one of the big specialist centres. Flop

I don't think that dermographism is really realated to POTS (unless your POTS is caused by MCAD then you might say there was a link). Basically when you scratch the skin you cause mast cells to break down and release their histamine, it is the histamine that causes the wheal and itching so that is why antihistamines help to prevent and treat this skin issue. If I am not on antihistamines I can literally write my name on my forearm with my nail or the blunt end of a pen and i will come up with my name written in raised red wheals that last up to an hour. I used to do it as a trick when I was much younger - no idea why as it really itches! Flop

I've had 3 proper TTT (45 min - 75min tilts) and also 3 shorter TTT that were part of the testing protocol at the autonomic unit I went to in London. MY first TTT was diagnostic of POTS. The second one was done as I was still complaining of symptoms but my cardio said that I was fixed because I was on the right meds. The 2nd TTT was on meds and wearing compression - still had a HR of 150 and dropped my BP. When i went to the unit in London the Prof wasn't willing to use someone else's TTT result and his protocol was different. He had me do the deep breathing, hand grip and hand in ice tests at the start of the TTT. The shorter TTTs were 10 mins long and were done after fasting, after a horrid complan milkshake and after supine exercise (pedaling an exercise bicycle whilst lying on the floor!!!). I am going to see my cardio next week and I am actually considering asking him to repeat my TTT as my symptoms are changing and I now have a high BP rather than a low one (gone up 40-60 mmHg over the last 3 months). octors often use the TTT results to guide what meds they prescribe for you. Flop

I've not heard of paracetamol (tylenol / acetaminophen) being used specifically for autonomic seizures (but I don't know much about autonomic seizures at all) but it certainly is used in children who have febrile convulsions. These kids get a high temperature from a cold or other virus, the fever affects the brain and the fever allows a seizure to happen (fevers lower seizure threshold). For kids that have had these types of seizures their parents are always advised to use paracetamol and/or ibuprofen to lower their fever as soon as they start to get a virus to prevent them having a seizure. Both paracetamol (acetaminophen) and ibuprofen will lower a fever. I am guessing that if Ava's temperature rises even a little it could increase the chances of an autonomic seizure. In her case it could be an autonomic problem that causes they fever rather than a virus but it would have the same effect of lowering the seizure threshold. It will be interesting to see if it helps Ava - keep us posted. Flop

I'll attempt to translate from Latin into English for you. To find out what it actually means in respect to your health you should talk to your doctor who should be able to explain what it means. Evidence for widespread sensorimotor polyneuropathy c/w mononeuritis multiplex widespread = they found it in many areas of your body, not in one localised area. sensorimotor = the nerve fibers that carry messages about sensation (touch / pain) and movement. polyneuropathy = many nerves affected. c/w = consistent with. mononeuritis = (mono = one) + (neur = nerve) + (itis = inflammation) = inflammation of one nerve fiber. multiplex = many times / individuals. mononeuritis multiplex = damage to multiple individual nerve fibers, either serially or concurrently. If you have tingling / burning pain / numbness or weakness then this diagnosis would explain those symptoms. I hope that the B vitamins help. Flop

I was started on a beta-blocker cautiously as I have asthma. My cardiologist chose Bisoprolol as being a BB that was cardio selective and least likely to cause problems with my asthma and allergies. I have come off the BB this year because my allergy problems were getting worse. And also because I really wanted to have desensitization therapy which you can't have if you are on a beta-blocker. I have managed to switch from a beta-blocker to a new med that is being used in the UK called Ivabradine (Procorolan). I don't think that it has been approved by the FDA yet but it might be one to consider in the future. Flop

I am someone that is in the middle. For me I am pretty bad but compared with others I am probably doing really well. I had to give up work a year ago but I still mange to get out of the house most days. I will get up and go to meet a friend, come home and go to bed for an hour. Then get up and watch a DVD or use the computer. Later in the day I try to go out again maybe to the supermarket or to get a coffee and read the paper in a coffee shop. I know what my body will allow me to do and I am careful not to try to do more than that. Being too busy or trying to fit too much into the day will make me crash for the next few days. I generally do better in the winter than in the summer as so many places in the UK don't have air conditioning. The one thing that my doctor told me when I first became ill was that I should never lie down flat all day. He said that i would feel much better lying down but that if i stayed flat all the time my blood pressure would adapt to being flat and then it would be even harder for me to stand up. Even if I feel horrible I force myself to sit upright in a chair with my legs down for at least 30 mins a couple of times a day. you can lie down afterwards but that period of being upright is important. It sounds like you have already found that lying down a lot doesn't fix POTS. I would advise that you slowly build up your tolerance to being upright - it might be propping yourself up with pillows initially. Once you can manage to sit up for a short while then consider borrowing a wheelchair so that you can get outside. It might only be into the garden or to pop to a friend's house but getting out of the house is so important to help keep your spirits up. Good luck, Flop

Hi POTS is only part of the very complex area of dysautonomia. Whilst what you describe are not typical POTS problems they are probably part of the autonomic dysfunction that you have - ie POTS and other autonomic issues. Flop