flop

Hi Yogini, I used to take Fludrocortisone and Midodrine to raise BP but I have been off both of them for over 18 months. The only med that I am taking that could raise my BP is a combined contraceptive pill (Yasmine). I used to take Yasmine with no problems and had decided to go back on it last month to try to improve my acne. It was when my GP checked my BP before re-starting Yasmine that I got the first high BP reading. She was happy yo prescribe the pill for me but I am now wondering if I should stop taking it - afterall I'd rather have acne than do myself damage from high BP. I have cut back on the salt in my diet too - I hate salt but used to add it to boost my BP, I have gone back to no added salt. I haven't done repeated BP measurements whilst standing, I'll go and find my BP monitor and have a go now. Flop

Hi, I've found the article I was referring to above. The reference for it is: ?Salt Supplementation Improves Orthostatic Cerebral and Peripheral Vascular Control in Patients with Syncope? V. Claydon, R. Hainsworth Hypertension. 2004 ; (April) 809-813. And you should be able to get the PDF document here. The article is also availabe to view online on this website. Flop

Thanks, Ramakentesh - I was wondering about essential hypertension but there doesn't seem to be a reason for me (female in my 20s) to develop it, we don't have a family hx of hypertension. Unfortunately symptoms wise I feel worse now than I did a few months ago and I am having more episodes of syncope. I don't think that my cardiologist understands / believes that arm BP doesn't match symptoms. I am fairly sure that he will say "oh good your BP is bettter, you are cured". Grrr, I just wish I understood exactly what was happening in my body so my doctors could have a better idea about how to control my symptoms. Flop

Hi, I am so sorry that you were treated like that. Munchausen's is a psychiatric illness where the patient knows that they are not ill but fake symptoms in order to get medical attention, often they get a buzz out of having tests and surgery done on them and will actually harm themselves to get medical attention (eg take loads of laxatives then complain of diarrhoea to get colonoscopies done). It is a very sad condition to have and people with it need expert psychiatric help and compassion. There is a version called Munchausen by proxy where an adult deliberately pretents that their child is ill or harms the child to make them ill so that they get medical attention. They might keep calling 911 saying the child had a seizure or may give the child something to make them vomit etc. Unfortunately the classic warning signs are young females who have large medical files - that fits with a lot of us! When I was in hospital the other year for ENT surgery I had some strange neuro symptoms after the anaesthetic (POTS flare due to being dehydrated from fasting and too many meds that affect serotonin levels). The surgeons got a neurologist from the regional centre to come and see me. He basically told me that there was no such condition as POTS and that I was faking all my symptoms. He wrote in my file Munchausen's syndrome then crossed through the actual name and wrote "advise transfer to an inpatient psychiatric hospital for assessment". Luckily my cardio and my autonomic neurologist had both already diagnosed me with POTS and NCS so they ignored this neuro's comment and I didn't get referred to psychiatry. What doctors should realise is that living with a chronic illness like POTS is very tough and many of us need psychological support to help us deal with the consequences of our genuine physical illnesses. Find another doctor - this one has already caused you a lot of stress and upset. I would write and explain though because otherwise he will think "ah-ha, I guessed right so she is going looking for a gullible doctor". Hugs. Flop

Luckily because our kidneys function normally if we take too much sodium (salt) our body will get rid of the extra in the urine (so long as you keep drinking!). The kidneys are very clever at getting rid of excess salt but they are not so good at holding onto salt when our levels are too low. Fludrocortisone works by making the kidneys hold onto sodium. Where sodium goes water will follow (osmosis). You can get your blood tested for Urea and Electrolytes (sorry don't know what the US name for the test is). This will show the levels of Sodium and Potassium in the blood. However that test tells you nothing about whether you are eating enough salt to help raise your BP. To assess if you are taking the right amount of salt you need to get a "24 hour urinary sodium" test. The result should be more than 170mmol/24hours sodium excreted. The urine test shows how much "extra" sodium our kidneys are flushing out during the course of the day. (A "spot urine sodium" is no good for us). If you are taking in enough salt then the kidneys will be pushing out more than 170mmol. This info is from a study done by Prof Hainsworth in the UK. He found that people who's 24 hour result was less than 170mmol felt better and had a higher BP if they started supplementing sodium at 6grams/day. My cardiologist uses that info to turn it into a monitoring test. If my results come back less than 170mmol/24 hour he tels me to increase my salt intake. If the result comes back more than 220mmol/24 hr he tells me to reduce my salt intake. I do the test about every 6 months to guide my salt intake. Flop

Palpable means that you can feel something. In relation to BP a "palpable BP" means that the nurse / doctor can feel the pulse at your wrist. Feeling the pulse is often used as a very crude check of BP, if you can feel the wrist pulse then the systolic BP will be 90mmHg or higher. When doing a proper BP measurement they will inflate the cuff on your arm to above the point where the pulse is occluded. They then listen with a stethoscope over the artery in the elbow crease to listen for when blood flow returns. Different sounds give them the systolic and diastolic numbers (the x over y, eg 120/80). Doing a full BP with a stethoscope takes up to a minute. To get a quicker reading they can skip the stethoscope bit and just feel for the pulse whilst inflating the cuff. As they let the pressure down, the point at which they first feel the pulse again is the "palpable" measurement. That method is less accurate but very useful to get a quick reading when someones BP is changing such as during a TTT. The "gold standard" for BP measurement during a TTT is to use beat-to-beat BP monitoring such as a finapress system with cuffs inflated over the fingers. This allows the doctor to see exactly when the BP changes - more important for assessing NCS than POTS but as many of us have both diagnoses it is helpful for POTS too. My local hospital did the TTT using an automatic BP machine that did a measurement every 2 mins. When I went to the specialist autonomic unit in London they used a finapres system. Flop

Hi Casper, where abouts in Europe do you live? Flop

I don't wear make-up anymore. Mostly because of facial sweating, even if I am not flushed I always feel hot and my face sweats like crazy. I find that makup either slides off or goes orange coloured from the sweat (urgh!). During my TTT in London it was actually noted by the member of staff observing me that my face was sweating a lot! Flop

mkoven - thank you, I'll be sure to ask my cardiologist for an echo because of the EDS but especially now that my BP is high too. Flop

Hi, thanks for the replies. Medication changes - I have been on Paroxetine for nearly 3 years. I started Ivabradine 6 months ago (swapped from Bisoprolol a beta-blocker because of allergies). I'm seeing my local cardiologist in 2 weeks (sort of why I am posting now) but don't see my ANS neurologist until the end of the year. I think that my last echo was in 2005 (normal), since being diagnosed with EDS no-one has even suggested echo monitoring, I was told that only Vascular EDS was a problem for aortic dilation. I don't understand how I can have a BP this high but still feel so ill. Previously I was told that my symptoms were all due to low BP so the approach was all based on trying to raise my BP. Now that I have a high BP and am still tachycardic - what do we do next??? Flop

I always used to have blood pressure in the low to normal range. Typically Systolic 100-120 and diastolic 60-75. When I had those sorts of BP numbers I took meds like fludrocortisone, midodrine and a combined contraceptive pill to raise my BP (without much success). Over the last year or so I haven't really monitored my BP much as there didn't really seem to be any correlation between my BP and how I was feeling. I've recently had my BP checked a couple of times for routine things and was very surprised to see that it was high on each occasion. I have checked it at home several times over the last month and found that my systolic lying was 124-135 but systolic standing was 142-162, diastolic was 80s lying and 90s standing. Yesterday my postural numbers were: lying BP 141/88 HR 97 sitting BP 150/97 HR 111 standing BP 149/98 HR 127 Has anyone else found that their BP has gone up a lot like mine has? My current medications for POTS are Ivabradine 5mg twice daily (slows HR but doesn't affect BP) and Paroxetine 20mg once daily (Paxil / Seroxat). Even with high BP I still feel really dizzy and tired and can't tolerate standing up for more than a few minutes. Flop

I did lying / sitting / standing BP and HR measurements yesterday evening. I had just been to a quiz at my local Borders bookstore so nothing too exciting but I was feeling awful. lying 141/88 97 sitting 150/97 111 standing 149/98 127 However I know that I can have a resting HR as low as 45 when lying down and have had rates of 55 when sitting. Sometimes when standing my HR is as low as 80. When I am symptomatic I do get big jumps in HR just changing position like rolling over in bed. Flop

I would describe a BP of 90/55 as hypotensive ie low blood pressure. "Normal" BP should be more like 120/80. Increasing your BP should help with the symptoms of cerebral hypoperfusion that you are describing. There are 2 main ways to raise BP (1) increasing blood volume and (2) vasoconstriction. (1) The usual fluids and sodium will help with this. Sodium can be from dietary salt, gatorade, pedialyte or salt tablets. Adding Fludrocortisone (Florinef) makes the kidneys retain sodium and that causes more water to remain in the blood. Medications like Erythropoetin (Epogen) also increase blood volume but are usually used where other medications have not worked. (2) The most common vasoconstrictive medication is Midodrine. A Non-medication way of obtaining a similar effect to constricting blood vessels is to wear compression garments such as stockings or hose or abdominal binders. Flop

I do both - sometimes I flush bright red, but more often I go a horrible grey/white colour. If I actually faint people always say that I went white before I fell over. Flop

For most people dysautonomia doesn't actually mean that we have a heart problem / arrhythmia or valve problem. We mainly have normal hearts that beat too fast because the autonomic nervous system is sending out the wrong signals. I've never taken anything like Provigil but I know that other members do take that type of med without any problems. Only your doctor can advise if it is okay for you to try a new med as they will have the information from your tests and can look at what other meds you are taking to make sure that the combination is ok. Flop

Most people handle bowel prep without too many problems. With things like moviprep the thing to watch out for is dehydration (the prep works by making water go through you to clear out any waste in the colon). Some people get admitted to the hospital to have their bowel prep so that they can have IV fluids to keep them hydrated. But that is more usual for elderly people or those with diabetes. They can look at the lower part of the colon after using fleet enemas as preparation but that doesn't clean out the colon further up so to have a good look they almost always want you to take oral bowel prep. I have taken both Kleenprep and Piccolax without any problems. Flop

If it comes in a box it should say on the box who the manufacturer is. If it is dispensed in a bottle then it may not say on the lable (it will have "Midodrine" as the drug name). The best thing to do is ask the pharmacist when they dispense it what brand they have given you. Flop

lots of labs do saliva cortisol tests. If you can get a full 24 hour cortisol profile done where you do 4 tests at different times of the day. I suspect that only some labs will do the tests without a doctors order for them. flop

I think that with MCAD you can have high IgE levels (as in regular allergies) but you can also have normal IgE levels but have all the symptoms of allergies. Flop

I would have thought that if you had major problems with the generic then your doctor would help you argue that your insurance should cover the brand that was working for you. Hopefully you won't have any problems. In the UK you can't get the ProAmatine brand of Midodrine, the only Midodrine I oculd get was made by Guttron and came from Austria. Flop

thankful, although it is very unusual for 3 first degree relatives to develop neuro problems in their 30s I don't think that there is anything to show that the three different illnesses that you have are genetically linked. Most inherited / genetic problems are due to one error in a tiny part of the body's DNA, this would result in a similar problem happening in all the affected family members. For example it is known that there is a family tendancy to atopy - family members may get one or more of asthma, eczema or hayfever. Or a genetic problem with BRACA1 or BRACA2 leads to high risk of breast or ovarian cancer. But the conditions are linked through the mechanism of the problem, I don't think there is a link between POTS, Carcinoid and Neurofibroma. Flop

Hi Cordelia, the best thing to do is to ask for more information from the doctors that did the tests. Diastolic dysfunction is a term used to describe movement of the ventricles of the heart. Between heart beats (contractions) the left ventricle relaxes and is filled with blood. Sometimes the heart muscle doesn't relax or remains a bit stiff that is called diastolic dysfunction. However sometimes a normal heart looks like it has diastolic dysfunction because it is too full of blood but is actually working fine. Hopefully you'll get more info from the doctors but in the mean time I found this on wikipedia. Flop

Because the scales are measuring impedence they measure the resistance to the tiny electrical current going through the body tissues, they don't measure anything to do with the nerves. (You would have to stimulate a nerve directly - like having peripheral nerve tests - not just stand on a plate). Sorry, still can't answer the question! Flop

Just wanted to point out that Ivabradine is in fact a totally new class of drug not a calcium channel blocker. Ivabradine works by blocking the If channel in the sino-atrial node of the heart. The f stands for "funny" because the researchers who discovered the channel had never seen anything like it before. Ivabradine slows down the heart rate, but unlike beta-blockers it doesn't lower the blood pressure. This is because the If channel is onyl found in the SA node, there is a similar channel in the retina of the eye which leads to the most common side-effect of visual disturbance (phosphene rings - like an orange glare). The majority of people don't get visual problems. Most people who do get visual symptoms find they settle down after a few weeks on the medication. Please note that I do take Ivabradine. It hasn't been a "wonder drug" for me but it has taken the place of my Bisoprolol very well and is better than the Bisoprolol was. I had to stop taking beta-blockers because of increasing allergies that meant that beta-blockers weren't safe for me to take any longer. Flop

Icthus, I've never tried Metinon myself (not been suggested by my doctors) so no personal experiences to share. However I am thinking about the person who said tachy was worse after stopping mestinon. I wonder if that person got a benefit from the mestinon whilst they were taking it and so noticed more the lack of benefit (ie more tachy) after coming off the medication?? Just a rambling thought! Flop