flop

Erika, you asked about high heart rate causing low haemoglobin / haematocrit / RBCs and low oxygen sats. I don't know of any reason for high HR to cause anaemia. However having anaemia will cause a high HR - if the body doesn't have enough red blood cells to carry oxygen round the body, it will compensate by making the RBCs travel faster and go round more often (by increasing your heart rate). I know that some people with mechanical artificial heart valves can get anaemic due to the metal valve squashing / breaking up the RBCs when it closes. Low oxygen sats - this one I think I can answer! When they measure oxygen sats it is usually by putting a probe onto your finger (or earlobe) (pulse oximeter). The probe shines a special red light through the finger and measures the light that gets absorbed. Because oxygenated-haemoglobin and deoxygenated-haemoglobin absorb the light differently the probe works out how much of the haemoglobin is oxygenated (%). The problem is that the probe is put on a part of the body far away from the heart. The probe assumes that there is a good blood supply getting to the finger. Lots of things can reduce the blood flow to the fingers - POTS, low blood pressure, cold hands, raynaud's, being outdoors on a cold day and many more. These problems reduce the peripheral circulation and cause a "false low" reading on the pulse oximeter. When the blood flow to the fingers is low, the blood that does get all the way to the finger tip will have had most of the oxygen it was carrying taken away to be used by the tissues that it passed by slowly - it is too slow getting from the heart to the finger so it doesn't still have all the oxygen it would have picked up from the lungs. This means that the blood in your finger might have low oxygen but it doesn't tell you anything about the blood just leaving your heart. The pulse oximeter gives an estimate of the oxygen saturations. The only way to get an actual blood oxygen saturation measurement is to have arterial blood gasses measured. In this test the doctor takes a sample of blood directly from an artery (usually the radial artery on the inside of the wrist). The blood drawn from an artery will be much brighter red than the blood taken for all other tests which comes from the veins. If the arterial blood is very rapidly annalysed it will give a reading of how much oxygen is in the blood. These tests aren't done that often as for most people the pulse oximeter gives a good enough result(plus arterial samples are much more painful to take and there is more risk of bleeding / lots of bruising and even damage to the artery). If a person really has oxygen saturations of 77% they would look very ill and have blue coloured skin especially the lips and tongue (central cyanosis). I hope that lot makes sense! Flop

In the first post of this thread you asked about new / future treatments for POTS. There are lots of different treatments for POTS and we all respond differently so there is unlikely to ever be one "wonder med" that helps everyone. This is mostly because POTS has lots of different causes and different mechanisms as to why we feel ill. Different doctors group POTS in their own ways (Dr Grubb and Dr Stewart are the 2 names that spring to mind). The ANS specialist that I see in the UK (Prof Mathias) seems to be trying out 2 different medications with some of his patients. He uses the more common treatments such as florinef, mestinon and midodrine but also prescribes: Ivabradine - a medication that slows the heart rate without changing blood pressure (this is not a beta-blocker) (not FDA approved yet). Octreotide - an injection that is given three times a day. It is usually prescribed for digestive and hormonal problems, I think it is used in POTS to reduce blood pooling near the gut associated with eating? Does anyone else know of any new treatments for POTS? Flop

Hi Maggie, what a wonderful idea! I'd love to have a square for "Flop". I'm based in the UK so I don't know if posting the fabric to me would be too expensive / too slow? If the distance is a problem maybe I can get Rachel to write on my square for me? Flop

There are some factors to be considered if your daughter does have Ehlers-Danlos Syndrome. Wound healing - as you have already found out, people with EDS often have problems with slow healing of wounds and often develop large stretched out scars. (Where I had my reveal device put in I have a scar 5cm x 2cm, usually there would be just a thin line). Local anaesthetic - some people with EDS don't get the full benefit from local anaesthetic (ie still feel pain after the numbing injections). I don't know why that happens possibly that the anaesthetic gets carried away from the area too quickly by the blood stream. That then raises local with or without epinepherine. Adding epi to local makes the blood vessels constrict keeping the local in the tissues where is was injected, so makes the numbing effect last longer. Some people worry about the epi causing tachycardia so prefer local without epi. However if the lack of benefit is due to clearing of the local then adding epi should help. It is worth thinking if she has ever had dental anaesthetic and if that had any problems? Some operations (particularly orthopaedic and sports injury repairs) are not as successful in people with EDS because the soft tissues don't behave like normal people's soft tissue. It is good that the surgeon is finding out about EDS before doing the operation. They may want your daughter to be evaluated for EDS before deciding about doing the surgery. As with any surgery you need to discuss the benefits and possible outcomes with the surgeon so that you and your daughter can make the right decision for her. Flop

If you have a detailed echocardiogram done they often include an estimated pulmonary artery pressure (PAP) - in people with pulmonary hypertension the PAP is very elevated. I think that the right ventricle would also show abnormalities and be larger than normal. Luckily most of us will have had echos as part of our POTS work-up so don't need to worry. Flop

The EDS bit is strange. Yes I am flexible and can put my hands flat on the floor with my knees locked most of the time, but when my back is bad it feels so stiff. Every wriggle feelis like it is pulling on tight muscles. I sometimes wonder if I over-stretch muscles accidentally then they sort of seize up afterwards? I know I have to sleep well supported. I lie on one side and have a big "body pillow" that my upper leg and arm rest on to avoid twisting my back. The bad patch I had a month ago was after spending the night away from home and not having a spare pillow to put under my top knee. Once I have seized up all I want to do is lie still in bed, even though I know it is the worst thing for a bad back. I like sitting in a jacuzzi / whirlpool but usually find the water is too warm for me. I've been thinking about trying to get a jacuzzi insert for my bath so that i can have tepid water but still have the jets massage my back. Has anyone tried any of the home things (not an actual bath, one of the mats that you put in the bath)? I wonder if the pressure would be too low to have the massaging effect? Flop

Ramakentesh, your dry skin round your eyebrows sounds just like seborrheic dermatitis. It is caused by the same fungus that causes dandruff. It often goes away on its own or you can help it on its way with something like ketoconazole cream. Flop

Hi Julie, just to clarify my statement about IgE: In most people with allergy (eg positive skin prick tests or high specific IgE) their total IgE is also very high (the worse the allergies the higher the IgE often!) In most people with MCAD they don't have true allergies - all the symptoms suggest allergy but allergy testing is negative and their IgE is usually low. It is possible to have both allergy and MCAD together. We know that I do have true allergies (specific IgE only elevated a bit but positive skin prick testing) so you would expect for my severity of symptoms that my IgE would be very high too. However my IgE is at the bottom of the normal range (makes doctors think that my allergies are only mild or that I am making up my symptoms!!!). I suspect that I am weird as usual and have both true allergy and MCAD (totally dependent on antihistamines even in the winter). I wish I could get to see a doctor like Dr Castells or even have a doctor run the tests that she recommends. My immunologist was "yeah, I've heard people use the term MCAD but there is no such thing". He did run some tests last time I saw him in clinic: serum tryptase total IgE Allergen specific IgE Pru p3 Pru p1 co5-gliadin The serum tryptase was to rule out mastocytosis (which he does recognise). The last three were because he got excited when I mentioned that I have had "allergic" reactions after exercising. Apparently some people react to gluten but only if they eat wheat and then exercise a few hours later. The tests were done in early March but I don't have the results (in the UK we don't normally get given copies of results) so they were probably normal with the IgE ones being the same as last time he measured them. I did give him a print out of an article about MCAD as a cause of POTS and he seemed interested (asked if he could keep it to read) but I don't have another appointment scheduled to ask him any more. I just go to the nurse allergy clinic for desensitisation injections every week. Thanks for the link to the German Dr but unless my immunologist were to refer me I can't see anyone else . If I had the money I'd fly to the US and see Dr Castells. Flop

Ok - really got the google bug today! Maxine, I looked up about large diverticuli in the small intestine and found Meckel's diverticulum which seems to fit! It would suggest that the big diverticulum in your small intestine has been there since you were born and is not related to the ones in your colon (which appear later in life in lots of people). Flop

Hi Maxine, it is really good news that the lung problem hasn't got worse over all those years - it suggests that it is something that isn't developing or getting worse (which doesn't sound like cancer, yay!). I guess your doc put about the neck pain and swelling above your clavicle to make sure that they look at those bits on the CT scan too, if you are having a CT you might as well get as much info as possible from the report! I think that with the lung - bowel connection you might have got a bit mixed up (easy to do with brain fog plus klonopin!). One type of GI problem is coeliac disease (also spelt celiac) due to gluten sensitivity. In coeliac disease the duodenum (first part of the small intestine, just after the stomach) is damaged by gluten in the diet. Normal duodenum has lots and lots of villi (tiny finger like projections) that give a big surface area for absorption of nutrients. In coeliac disease the villi get destroyed by gluten so the person can't absorb their food properly. A similar word is "cillia" which are small hair-like projections on cells. Cillia work by wafting things along. In the lungs they waft mucous out of the lungs (smoking destroys lung cillia which is why smokers cough). Other parts of the body have cillia too and there are some rare diseases that are due to problems with cillia throughout the body. Things like Kartagener's syndrome where the internal organs are back-to-front and the lungs are damaged by buildup of mucous and chest infections, but things like that are very very rare and are usually picked up by doctors during childhood (heartbeat is on the wrong side of the chest, liver is on the wrong side etc). With all the Latin words that are used in medical stuff, I'm glad that I learnt some basic Latin vocabulary! Flop

I have similar problems with recurrent back pain. When my POTS and EDS are behaving themselves and I can get out and about / gentle swim / walking / Tai Chi class my back seems to be okay and doesn't cause too much bother. However if due to POTS or pains in my knees I am unable to "keep moving" then my back will flare up badly. Sitting in the car or driving for too long also causes back, shoulder and neck trouble. When I am having a bad time with my spine it can take quite a bit to sort it out. I see a personal trainer who is qualified in sports massage. A few weeks ago I had really bad upper back pain (couldn't sit down as too painful, had to lie or stand up) and needed him to massage me 3 times in one week but the repeated treatment worked and the pain settled. I try to get a massage at least once a month even when my back is behaving otherwise it does tend to stiffen up and cause pain. Once you have got your back moving without too much pain try doing some gentle exercise (such as Tai Chi which has gentle curling / uncurling "spine wave" and rotation movements of the spine) to maintain the movement. Flop

More info on MCV MCV (mean cell volume) is a test that measures the size of the indvidual red blood cells. When the body has low iron stores (low ferritin) the body will still make new red blood cells but they don't have the right amount of iron in them so are smaller than normal red blood cells. If someone is anaemic (low Hb / haemoblobin) and have small red blood cells it is called "microcytic anaemia" - the most common cause for this is iron deficiency. It is quite easy to get the "iron deficiency" diagnosis if you have both anaemia and small red cells. However you can have a normal number of red blood cells (ie not anaemic as Hb normal) but those cells can be on the small side because the body is using all the iron it can get from your diet to make the cells and has used up all your iron stores. This is the situation that I was in for years - no one took any notice of the low MCV as my Hb was normal. My typical numbers were Hb 12-14, MCV 79-80. It was only when I had a major major nose bleed and dropped my Hb from 14 to 8 that people started to take notice. I was given blood transfusions to get my Hb back up to 10. A week later my Hb was back down to 8. When asked about bleeding I said I was on my period (always been very heavy). The doctor worked out that probably for years I had been dropping my Hb by 2g/dL each month (from 14 to 12) then during the month my body worked hard to replace the lost blood before my next period. All of that work making red blood cells had totally wipped out my iron stores and resulted in the ongoing low MCV results despite a normal diet. To be complete, you can also have a high MCV where the red blood cells are bigger than normal. If someone is anaemic with large RBCs it is called "macrocytic anaemia", the most common causes of that are B12 deficiency, folate deficiency or excess alcohol consuption. Treating iron deficiency - most doctors prescribe iron tablets but many people can't tolerate them. Usually iron causes constipation but in me it had the opposite effect! I was switched from ferrous sulphate to ferrous gluconate tablets as they are slightly easier on the GI tract. I was supposed to take 6 tablets a day but I could only manage 1 but even that small dose was enough to bring my MCV back to normal in 6 months. I have just found a bit on Wikipedia that says that as little as 15mg of iron can be enough to correct iron deficiency - the "standard dose" prescribed in the UK is 200mg x3/day ie 600mg per day. So even if iron causes GI problems it might be worth looking for a multivitamin supplement with just a small bit of iron in it or a children's supplement (the GI side-effects are directly linked to the dose, so small dose should mean little GI effect). It is amazing how much information is on the internet when you go looking for it!

I've heard excellent reports about Dr Svetlana Blitshteyn in NY. She is one of the medical advisors to DINET. http://www.dinet.org/medicaladvisors.htm Flop

I also meant to say that some people recognise MCAD as a cause of POTS. Flop

Hi Linda, I only found out about MCAD on this forum but a lot of the symptoms seemed to fit mine. I am on all-year-round antihistamines (H1 and H2), Singulair and nasal steroid spray for allergies. I have oral allergy syndrome in response to eating several different types of fruit. I am atopic having had problems with both eczema and asthma in the past but they are not troublesome at the moment. What doesn't fit with standard allergies is that I have had episodes or feeling baking hot, sweating, oral swelling, hives, tachycardia and low BP (anaphylaxis??) with no apparent trigger, and that my IgE levels are low (with my allergies you would expect me to have sky high IgE). I always thought there was a link between my hayfever and POTS as whenever my hayfever is bad my POTS is bad too - itching and sneezing go hand in hand with tachycardia and dizziness for me. My thought was that histamine was causing vasodilation (came up with this thought independantly about 4 years ago but was scoffed at by my doctors). When weaning off the pred (even slowly) I found that I had 3 days where I was more tachycardic and dizzy than normal (shorter time tolerated standing up eg 2 mins instead of 10 mins before vision going black). Then my POTS symptoms would settle back to normal, the next week I would have the same increase in POTS symptoms for the first few days again. I don't know if any of this correlates with what you know about MCAD and POTS? Flop

Hi Linda, the two summers that I took long term prednisolone for hayfever I had a hard time weaning. Tachycardia was one of my withdrawal symptoms and it seemed to me that my POTS flared each time I reduced the dose. Because of the symtoms I weaned super-slowly. I cut back from 10mg to 7.5mg then by 0.5mg per week (sometimes waiting 2 weeks). I did this by taking 7.5mg daily for 1 week, then 7.5mg and 7mg alt days for a week, then 7mg daily for a week, then 7mg and 6mg alt days for a week, 6mg daily etc.... If you are on much higher doses of pred the initial reduction can usually be a bit quicker (I went 20mg to 15mg to 10mg without too many symptoms). It was my POTS flares on withdrawal of steroids that got me thinking that I might possibly have MCAD. Unfortunately my UK immunologist doesn't believe that MCAD exists so won't test me for it (it took me 7 years to get a referral to the only immunologist covering a large part of the UK so seeing someone else isn't really a possibility). Flop

Is the rash near your nose dry / flakey at all? I seem to be prone to bouts of seborrheic dermatitis by my nose and eyebrows. Unlike regular dermatitis / eczema, seb derm responds best to anti-fungal treatment like ketoconazole rather than emollients. Probably worth seeing your PCP and letting them take a look at the rash. Flop

Do you have anywhere with a bit of shade that you could park the car? Have you tried putting sliver coloured "blinds" in all the windows (cardboard and tin foil works) to reflect the sun's heat away from the car? When I need to drive I put the AC on full blast and then open the windows for a minute - sounds mad but it lets the AC blow out all the hot air before it really starts to cool the car down. Flop

I'm not of Florinef at the moment but when I took it I started on 0.05mg (half a tablet) and slowly increased by half a tablet every few weeks up to 0.3mg Flop

The experts for iron deficiency and anaemia testing are actually Haematologists but any doc with an interest should be able to sort out the right tests. Flop

Hi, I'd be interested to know what your MCV (mean cell volume) has been on your CBCs. I for years had a normal Hb (haemoglobin) but borderline-low MCV when I then had massive nose bleeds and needed transfusing I got put on iron supplements and did feel much better! Flop

Hi, sleep problems are a big issue for me too - either can't sleep / wake up too soon, or days like today where I've slept until 3pm! I like using guided meditation or soothing sounds like rain / forest noises / waves to ease me back to sleep - seems to help stop my mind from churning / being annoyed that I am not asleep. I have a dawn stimulator lamp that hase pre-recorded sounds and meditation that helps. Also I have downloaded some sample MP3 files from a company called pzizz, they do recordings for short naps as well as before evening sleep. Hope you get a good nights rest tonight. Flop

Love, hugs and prayers to you and your family Nina. Flop

Hi Shoe, congratulations on finding such a helpful doctor - to have someone go through all your notes like that is fantastic, and even better that they are coming up with ideas to fit all your symptoms and what tests need to be arranged. Let us know how things work out. Flop

Hi Maxine, I'm sorry to hear that you have an additional health worry at the moment. Several important things have already been said by other members but I just wanted to pull some of them together. You have read that reticular nodularity can be a finding in cancer - however you have probably also read lots of other reasons for that appearance on a chest x-ray which are much less serious than cancer? You also said that there were some changes on a chest x-ray from a few years ago - that is actually quite reassuring as most serious lung problems would have got dramatically worse over a few years. As the pulmonologist has both films he would very easily spot big changes that could be alarming. Oncologist vs Pulmonologist. Oncologists are experts in treating cancer, they don't normally diagnose it as people usually see an oncologist once there is a diagnosis or strong suspicion of cancer. Unless a doctor who has seen your films advises seeing an oncologist I would steer clear. Believe you me if the film showed a suspicion of lung cancer they would have had you in hospital for a CT scan and bronchoscopy faster than you could cough! What you have is a not-yet-diagnosed lung issue on chest x-ray. You need to find out what the x-ray findings mean and if they are significant or not. The person who should be able to give you these answers is a lung and chest expert - ie a Pulmonologist. I know it is easy to say and hard to do, but try not to stress whilst waiting to see the pulmonologist! Flop