flop

He looks so soft and furry, I want to stroke him!

I have exactly the same issue. Most people get constipated from iron supplements, that's easy to deal with but some of us get the opposite effect. Which type of iron tablet are you on? I was given ferrous sulphate first, then a GI specialist suggested trying ferrous gluconate which is supposed to be better tolerated. I should take 2 tablets three times daily - actually manage about 2 per day max. If you are really iron deficient and not asthmatic / allergic you might ask your doctor about iron infusions. They won't give them to me because I have asthma which can suddenly flare up into a severe attack. I really resented that last year when I had to have 6 blood transfusions. You might make the iron a bit gentler on your system by splitting the dose up, start with just one tablet a day and see if you can tolerate that and then build up gradually to the most you can manage. Also it is important to take vitamin C at the same time as the iron as it helps with absorption, avoid tea and coffee as they impair absorption (I'm sure that there are other things that you shouldn't have at the same time as iron supplements but it is too late at night here for my brain to work properly - try a google search!). Flop

I had allergies before I developed POTS. For me, when my allergies are bad (high pollen counts etc) it seems to trigger my POTS symptoms too. Allergic reactions cause the release of histamine from mast cells. Histamine causes vasodilatation (widening of blood vessels) which can lead to lowering of the blood pressure. In some of the medical literature on POTS it says that good control of allergies is vital in treating POTS. Flop

Hiccups are usually caused when something is irritating the diaphragm. Abdominal surgery can cause awful problems with hiccups as Melissa can testify. One common cause is having swallowed air, this can be from fizzy drinks or accidentally swallowing air such as when trying to eat too fast or talking whilst eating. It can help to make sure that you sit upright when you eat and drink, eat slowly and chew your food thoroughly before swallowing. I know that burping isn't polite but if the cause of the hiccups is trapped wind in your stomach then allowing yourself to burp can release the gas and stop the hiccups. Hope they settle soon, Flop

I took Singulair for a few months when I was first at University (asthma flared up because I moved into a damp mouldy room in the halls of residence). At that time I didn't have POTS and the Singulair helped my asthma without causing any side-effects. I only took it for a short time as my asthma improved dramatically and I didn't need it any longer. I'm currently having problems with hayfever yet again. The last 2 years I have ended up having to take Prednisolone all sommer to combat the symptoms. Having uncontrolled allergies makes my POTS much worse! I really want to avoid steroid tablets this year as the long term side-effects can be significant and because weaning off the steroids really causes my POTS to flare and it usually takes 4months of regular POTS flares to get off the prednisolone again. I saw my GP yesterday and he has prescribed me singulair to take for my hayfever. I haven't had chance to get to a pharmacy yet so haven't taken any so far but am planning on starting it soon. Flop

Congratulations, and best wishes to all those applying or waiting to hear. Flop

Hi, I also use a seat stick. I bought mine from a NationalTrust shop whilst on a daytrip with my family a few weeks ago. We were taking a gentle stroll in the gardens and my family were horrified at how often I had to sit on the floor (getting my trousers filthy) and how dizzy I was getting. It was quite a warm day and I should really have known better than try to join them on such a trip out. Anyway on the way out there was a NT gift shop with 2 different types of seat sticks, I went for the lighter one and have used it so much in the last few weeks. My stick seems to be identical to one of the ones on sale at this website: www.benefitsnowshop.co.uk/ If you click on "stick seats" under the "Mobility" heading it has several different varieties, mine is like the "Three Leg Stick Seat" and "Folding Tripod Stick" (they seem to be the same product but with different prices!). I didn't buy mine from the website but it looks the same with the addition of a NationalTrust logo badge in the centre of the seat. It has been really useful and I take it to work with me every day, so useful when a collegue catches you in the corridor and starts talking, now I can just sit down where I am and carry on with the conversation. The seat is too high to stop my symptoms if they have already started but if I use it before they develop it allows me to be away from a normal chair for much longer than would otherwise be possible. Also fantastic for anywhere that you need to queue up - so many "healthy" people have jealously asked me where I got it from. If people question me and I don't want to explain about my health issues I just joke that I'm lazy or that I get tired. Flop

Yep, our minds are definately on the same track tonight Melissa. My "appology" was written whilst you were typing your "PS", you must have typed more quickly than I did - LOL Right, getting back to the real topic....Angela have we managed to come up with any ideas that you haven't already tried? There must be something out there that can help your nausea. Have you got a list of all the anti-nausea meds that you have tried in case anyone knows of any others that you could try? Flop

Oh Ami! ((((((HUGS)))))) I can't imagine how bad the pain must have been but I can imagine the horrified faces of your husband, Mike and the doctor. She must have felt dreadful for having caused you that much pain - I think that it was really sweet of you to think of getting flowers for her, show how much you truly care about others despite your own problems - you most certainly do deserve the HRH reception and recognition for your tireless work! I'm not sure about the POTS spreading to the joints either, steroid injections are commonly used to treat inflammed joints from all types of arthritis including rheumatiod - it must have been quite an adverse reaction that you had. Hope the pain has settled now and that the plaster cast helps sort the thumb in the long-term as I know you will be wanting to use it again as soon as they let you out of the cast! When you do get the plaster off ask if you can try a thumb spica splint. I had one after a scaphoid plaster cast then a futura splint (no good for thumb pain!) following an injury in a car accident. It is a neoprene wrist and thumb wrap with a springy metal strip along the lateral border of the thumb that allows you to move the thumb but provides support and stops you over extending the base of the thumb. I got mine from the physio at my local UK hospital (and really wish that I could find it as it would be useful to wear occasionally when that thumb plays up). Take care, Flop

Sounds like Melissa and I were typing at the same time and came up with several similar questions - sorry to bombard you Angela! Flop

Hi Angela, I know that you've said that you manage to eat and then get extreme nausea several hours later, do you eat less than you normally would because of the nausea? If so you a probably not taking in enough calories to meet your nutritional requirements even though you aren't wasting calories by vomiting them back? Have you tried keeping a food diary specifically to work out your calorie intake (I'm sure you will have already throughly analyzed for foods that make you feel worse than others)? Have you tried a very low fat diet? I know that sounds mad in someone who is loosing weight, but fats are harder to digest and the presence of fat in the stomach causes it to empty more slowly which might worsen your nausea. I have no experience of gastric pacers so can't comment on them, and I'm not trying to dissuade you from trying a pacer - just trying to think if I can come up with any ideas that you haven't tried yet. You could always delay rather than cancel the pacer surgery if you haven't decided yet about going ahead with the procedure. Flop

Hi Maxine, ((((((HUGS)))))) I just wanted to let you know that I am praying for you and your family. You have already faced so much emotional trauma as a family this year that I felt shocked and upset when I read your latest post. I know that traumas like these heal slowly and pray that you are all given strength and time together to support each other as you come to terms with everything that has happened. Flop

Hi Erica, the blood test that you had with a sodium result of 142 shows the level of sodium in your serum (part of the urea + electrolytes blood test). Although your result was normal this doesn't reflect your total body sodium level. There was some research done in the UK by Prof Hainsworth on total body sodium levels and sodium supplementation. He used a 24 hour urinary sodium measurement as an estimate of the total body sodium. YOur PCP sould be able to request a 24 hour urinary sodium test for you. Essentially you collect all of your urine over a 24 hour period (there are special directions about how to start and stop the test) and they measure the urine volume and sodium concentration to give a result as xxx mmol/24 hr. The research showed that patient's who's results were less than 170 mmol/24 hr benefited from sodium loading (they used slow sodium 6g/day). My blood tests have always showed a normal sodium level but my 24 hr urine sodium was low so I was put onto slow sodium along with my fludrocortisone. As fludrocortisone works by causing reabsorption of sodium from the urine you need to have a high enough level in your urine to reabsorb in the first place. I hope that makes sense, Flop

Hi Tanzanite, I'm in the UK and have been put on both Midodrine (not licenced in the UK but obtained on a named-patient basis from Germany via the hospital pharmacy) and compression stockings (provided on the NHS - you're entitled to 2 pairs every 6 months). If you'd like to PM me and say where abouts in the UK you are I could share the details of my specialist if you like? Flop

I would often sway if I tried to stand still. Not an issue now as I avoid standing still - I either try to walk about or I am rising up and down / stepping in place to keep my calf muscles pumping to squeeze blood back to my heart from my legs. Flop

On the medical front the ensure and ensure plus are very milky and quite a lot of people don't like them. In the UK we can also get enlive and enlive plus which are fruit based supplements (they do have a lot of fruit sugars in so not so good for diabetics) and might suit you better. There are also things like calogen which looks awful but is essentially 30mls of a high fat strawberry medicine that you drink a couple of times a day - not balanced nutrition but it does contain a lot of energy. If you are not milk sensitive there are lots of things you can make with milk / cream / ice cream. McDonald's milkshakes are actually quite calorific if you like them. I used to whizz up full fat milk with peanut butter in a blender. I also love bananas so used to mash them with some brown sugar and dairy cream. Hope you find some things that suit you - let us know if you create any new combinations yourself. Flop

Nina, I'd be greatful that you only had to have 15mins of the tilt to get a diagnosis. I somehow lasted a full 40 mins then had GTN spray and another 20 mins tilt. They kept going as I didn't actually blackout but I did have several episodes of near-blackout with sky-high HR and lowish BP. I've got to have another tilt test soon with me on all my meds and wearing compression stockings to see exactly what is going on at the moment. My cardio isn't sure if my current symptoms are POTS and wants to see if the treatment has normalised my response to the tilt test. Urgh, I can think of better things to do on a friday afternoon! Flop

I've never been a "breakfast person" - I can't face eating in the mornings so often skip breakfast (yes I know that breakfast is really important, and I do try to eat toast when I arrive at work). I have found that drinking fluids during the night seems to help. I'm not a great sleeper (it's 3am in the UK now and I'm wide-awake) and everytime I wake up I drink a glass of water. This does mean that sometimes I have to get up to go to the bathroom but not getting dehydrated overnight seems to help my morning BP and nausea. Right, I'm off for some more water then hopefully some sleep. Flop

Hi Linda, I don't think that anyone can advise you over the internet about whether you should call an ambulance. Certainly if you had low sats, low BP, hives / rash / swollen lips etc get help right away. Only a medical professional seeing you at the time of the symptoms could say if it wasn't an allergic reaction. It sounds like these episodes have settled previously but your own doctor might be able to advise when it is ok for you to deal with this at home. If your symptoms are getting worse and you are in doubt I'd go to the ER. Take care, Flop

Hi Jennifer, It is possible, but unusual, to have a normal TSH (thyroid stimulating hormone) with abnormal T3 or T4 levels. Most labs when doing thyroid function tests measure both TSH and either free T3 or T4 - this should identify those patients with a thyroid problem but normal TSH. Have you seen a local endocrinologist? They should be able to thoroughtly check you for thyroid and other endocrine problems without you needing to travel and would normally be covered by insurance. You are right that POTS is a collection of symptoms - the definition of a syndrome is a collection of signs and symptoms. POTS is not a specific disease but a group of these signs and symptoms that may well have different causes in different people. There is information about this in the main part of the website. Flop

Hi Linda, I can certainly understand why these horrible throat symptoms would get you scared and panicky. It sounds like you have discussed this in detail with your allergist so I would follow his advice but be sure to report any new symptoms. Have you tried any of the liquid reflux treatments? - in the UK Gaviscon is quite popular as it sort of coats the throat and gullet and eases the burning pain (that is what others have reported - have never taken it myself). Are you still taking the aspirin and coumadin (it is not often that both are prescribed together)? Hopefully if DVT and PE were ruled out at the second hospital you don't need them anymore? Flop

Melissa, you may be rambling slightly off topic but it is helpful to me. You have jut got me thinking that one of my friends has a baby that is only a few weeks old so she is probably in a lot at delivery times - I wonder if she would take a delivery for me? Anyway, as you can probably tell I'm rather enthusiastic to get this book (not sure when I'll find time to read it though). If anyone else had read it / started it please let me know what you think of it, what do you think of it from our point of view as patients? Would you want your doctor to read it? Would you give it to your doctor even??? Flop

Strange that you mention not having palpitations. I used to have infrequent palpitations that have turned out to be an atrial tachycardia on my Reveal recordings. Since being on beta-blockers I have only had 2 episodes of those palpitations. The sinus tachy from the POTS is completely different - I am not aware of it at all. My HR hit 170/min on the tilt test and I felt really dizzy but had no idea I was tachy until after the test when my cardiologist told me the results. Flop

People having severe allergic reactions often get an urticarial rash (hives) swelling or angio-oedema (which can include lips, eyelids, tongue, throat), asthma / wheezing with severe shortness of breath. For the diagnosis of anaphylactic shock your blood pressure has to drop but that is a very late sign of a severe allergic reaction. Are you getting your allergy symptoms at the same time as the throat symptoms? Ah - have just seen your second post, if this has all started since you were put on aspirin that may be the cause. 10% of patients with asthma are sensitive/allergic to aspirin and other NSAIDs. Did the doctors explain why you needed aspirin and "blood thinners" after your ablation? By blood thinners do you mean you taking warfarin / coumadin or something else? I would talk to your doctors asap about these symptoms to see if you can work out what the problem is. Anyone who seems to be having a severe allergic reaction especially if there is breathing difficulty should call for an emergency ambulance immediately. Hope you get some answers and feel a bit better soon, Flop

Wow Angela - that is a lot of tests! I think I was a bit easier to diagnose as my main symptom was recurrent syncope and my cardiologist has other patients with POTS so he was aware of the condition. I first presented with palpitations before I got the viral illness that seemed to trigger my POTS but this is the list of tests that I can remember having before being diagnosed. ECG Chest X-ray Echo 7 Day Holter ECG Moniter Cardiac Event Recorder External ECG Loop Recorder Exercise Tolerance Test Electrophysiology Study Reveal Device Tilt Table Test Quite a few of the tests were done before my syncope started and there was actually only 3 months between the onset of my frequent syncope and my tilt table test. The heart rate of 170/min with BP of 96/90 pointed to POTS.