flop

Yes local honey (if it hasn't been processed) will contain pollens and eating it can help with hayfever - must be local so it has the local mix of pollens. Even better if you can get to know a beekeeper is to have the scrapings from the bottom of the hive - much higher pollen content apparently. Flop

Often urine levels reflect the blood (or sometimes body) levels of the same substance (assuming it is excreted via the kidneys). Low urine levels on their own probably aren't a problem but might be a clue that you may be generally low in magnesium etc. It would be worth getting the blood levels measured too to see if they are also low. Flop

Dryness down there would fit with you other mucus membranes being dry. It is certainly worth asking to be referred to a rheumatologist - they specialize in connective tissue problems. Yeast infections can be horrible. Certainly being given antibiotics will allow yeasts to overgrow so thrush is common after antibiotics. Another thought is has you partner been treated for yeast too? Even if there have no symptoms they could be passing the infection back to you. Have you had the stronger thrush treatments (tablets)? If the yeast is higher up then creams and pessaries might not clear it totally. Does your doctor confirm the yeast with a swab or treat based on symptoms? It could be all related to dryness with no actual infection, or an infection that needs a different treatment. Hope you get some answers and relief. Flop

I don't think that I have tried Panax Ginseng (I usually look up everything that my TCM practitioner puts in my herb prescriptions). Separate from TCM I have a tincture that I use "as needed" for extra energy. I was directed to take a dose when I feel like I need a coffee instead of the coffee. Seems to help with fatigue/concentration, haven't noticed any effect on POTS symptoms. The tincture contains: Siberian ginseng, Liquorice, Gum guggul, Gotu kola, Ginger root, Dandelion, Cayenne, Fenugreek, Hawthorn, Red clover. Flop

Also meant to say that working with a therapist is a good idea. This is the sort of issue that could also be helped by an NLP practitioner (neuro-linguistic programming). Flop

Lissy, (hugs) I hope you are doing okay with the antibiotics. I know that I am "sensitive" to some meds so I usually start on half the adult dose to test out any new med for POTS. Both Ciprofloxacin and Flagyl (Metronidazole) are commonly used antibiotics and don't usually cause allergic reactions. In general antibiotics can upset your stomach so having some "live" yoghurt / probiotic drink during and after the course of antibiotics can help keep up the numbers of good bacteria in your digestive system. An allergic reaction is usually quite obvious with one or more of rash, swelling, wheezing - any of those should be quite obvious to a doctor and you should go to the ER or urgent care. Let us know how you get on, Flop

I have a couple of different reactions to certain foods. Allergies - I have an allergy to many fruits (peach, plum, melon, kiwi, apple, tomato) if I eat them raw my lips, tongue and throat will tingle, itch and swell up and I start to cough and wheeze. I've never had a life-threatening allergic reaction (anaphylactic shock) but I do carry an Epi-Pen just in case I get a worse reaction. This sort of allergy is called "oral allergy syndrome" or "pollen-fruit syndrome" because there are proteins in the fruits that are very similar to proteins in the pollens that I am allergic to so the body thinks cross-reacts and triggers an allergic reaction. Intolerance - my GI system and body are sensitive to wheat and other grains. A health practitioner advised that I went on a grain-free diet which did improve my symptoms (no bloating, less GI problems, less energy and mood swings). The diest was difficult to sustain so now I limit my grain intake rather than totally avoiding. Refined carbs / sugar - I don't have any sort of allergy to these but eating them does throw my body out of whack. I get horrid surges of energy and then crashes and just feel like my POTS is acting up more than normal. Again I try to limit my intake of things like cake or biscuits as I know I will suffer if I eat them. One thing that I have really learnt to avoid though is Aspartame (an artificial sweetner) - when I first stopped having aspartame I didn't notice a big difference but when I then accidentally drank juice with aspartame for a week I noticed that my brain fog was much much worse. Cutting out aspartame really helped clear my head. Flop

My cardiologist suspected Marfan's when I was much younger. I have since been diagnosed with hypermobile Ehlers-Danlos syndrome. One of the features of EDS is "marfanoid body habitus" ie the tall, thin, wide arm span, long feet/hands but without the actual genetic defect that is the cause of Marfans. Both Marfans and EDS are inherited/genetic collagen defects. Flop

I find reading really hard work. I have dyslexia so have always had to put extra effort into reading but I used to manage to compensate and got top grades at school. I now find that my concentration isn't good enough to read for pleasure. I can manage reading things like the forum because it is small chunks of text, but the thought of a whole chapter in a book is just too much. I enjoy audiobooks. I have bought some audio CDs, borrow CDs from my local library and have recently joined Audible an online club where you subscribe and download a book each month. I am currently really enjoying listening to Dan Brown's "The Da Vinci Code". The Harry Potter books (and anything else) read by Stephen Fry are big favourites. Flop

I've used metoclopramide short-term many times with good results but I am meaning only 3 or 4 doses not taking it on a daily basis. Flop

It makes me so mad when people in authority question our need for disability badges. It is bad enough some of the looks you get from members of the public. I know that they probably want to check that you are entitled to special parking but that wasn't the way to ask! A much better way was what happened to me last week - as I pulled into a disabled bay the parking attendant strolled over and asked if I had a badge. I got my blue badge out and he appologetically asked me to show him the photo on the back to confirm it was my badge. He then offered to help me out of the car and explained that they were on a crack-down to prevent abuse of disabled parking bays and to make sure they were free for people like me who need them. He made a thorough check but was really nice and polite about it. Sorry your experience was so different but way to go for reporting him - no way should a member of staff speak to you like that! Flop

My cardiologist prescribed knee-high compression for me a few years ago. He referred me to a vascular nurse specialist who did a thorough examination of my legs to make sure that compression wouldn't cause any problems. I was measured and had my ankle-brachial pressure pressure index checked (they had never seen anyone with arm pressure 105mmHg and ankle pressure >240mmHg!!!). The first time I was given a pair of 18-24mmHg stockings and 20-30mmHg stockings. I then had a follow up with the nurse 9 months later and moved up to 30-40mmHg. I go about once a year to be re-measured and get new supplies.

For quite a while I used a wheelchair whenever I was out of the house. I was lucky to get funding for a modern light-weight sports type chair in order for me to carry on working. I think because the chair looked funky and I looked at home in it (not lost in a big heavy chair) it helped me to feel confident about myself. People at work found it very odd for me to use the chair but out and about most people treated me well. I was surprised how many people went out of their way to open doors etc - including a group of dodgy looking youths hanging about in a car park. I found my chair is most helpful in places like supermarkets and malls where there are flat smooth floors. Self-propelling on wonky pavements is really hard work! Flop

I take the pill for period pain. Hopefully this was a one-off awful cycle and things will go back to normal, but if it remains a problem then you could still think about the pill as treatment even though you don't need contraception. Flop

Dr Svetlana Blitshteyn is one of the medical advisors for DINET and is one of the two doctors interviewed in the DINET documentary. She seemed really knowledgable in the DVD. Let us know how your appointment goes. Flop

I try to keep my HR about 30/min higher than it was when I was resting (tend to so seated gentle cardio so standing isn't a factor). So if I was at 90/min at rest I will exercise at 120/min which is enough to get me breathless. My trainer says it is better to do a longer time at lower intensity for me to help me build up stamina. If I exercise without watching my HR (ie row hard or run on a treadmill my HR will hit 200 easily). Flop

I've been pretty lucky side-effect wise from the meds I have tried for POTS. The worst was the first day on Paroxetine / Paxil (I've posted about this before so won't bore you all). However I was glad that I saw a doctor the next day and was told to take half a tablet. Felt rotten for the first 2 weeks but then the side-effects went away, as I agree with trying to stick it out for a couple of weeks before giving up on a med. Flop

When a doctor / nurse takes your BP using a cuff and stethoscope they actually listen for the blood flow in the artery. Automatic machines work differently they "feel" the pulse by measuring pressure differences in the cuff with each heartbeat. If your BP is very low, or your pulse pressure is very narrow (the systolic and diastolic pressures are close to each other) then there won't be a strong enough pulse for the machine to "feel". If you can't clearly feel your own pulse then any machine will struggle or give an error reading. The most acurate automatic BP monitors are ones with arm cuffs rather than wrist cuffs. Omron are generally regarded as being one of the best brands (most UK GP surgeries use omron monitors). The BP cuff should be at the same level as your heart. If your elbow is by your side (sitting or standing) then you probably have the arm cuff in the right place. For example if you lift your arm above your head then take a BP reading it will come out super low but won't be anything like what your BP in your main arteries is. Flop

For me it varies hugely from day to day and more noticeably recently from week to week. On a really good day I might be up and about from 8am to 11pm and I could be out of the house for up to 6 hours. However a lot of that time would be spent sitting - at home, in the car, at hospital appointments, in cafes etc. Days like yesterday are not so good. I dragged myself up at 9am for a 9:30am meeting. Tried to force myself to stay awake whilst doing important jobs like going to the council office and the jobcentre (sorting out my benefits). By 12 noon I was exhausted so went back to bed. Got up again at 3:30pm as I had booked a hair wash (cheaper and easier to go to the hairdresser than have a care assistant come to my house). Back to bed at 5pm, got up again at 7pm to collect my sister from the train station. We went to pizza hut for dinner then back home and sleep again - I was soooo tired! Flop

When I was diagnosed my cardiologist said I should stop having baths and have a warm shower instead. More recently I have found that on good days I can tolerate a warm bath without any problems. However I only do this when there is someone about in case I faint whilst getting out - I wouldn't want to drown! Flop

Before I was able to go in Ivabradine I used to take tiny doses of a beta-blocker called Bisoprolol. I started on the dose used for heart failure 1.25mg once a day and over 2 years gradually worked up to 2.5mg twice a day. That was still a smaller dose than is used to treat high BP which would be 10mg. The bisoprolol actually worked very well for me and if I only had POTS I would probably have stayed on it. My problem is that I also have severe allergies and we think that the beta-blocker might have been making the allergies worse. I am currently having injection desensitisation treatment and in the UK you are not allowed allergy injections if you are on beta-blockers - that was my reason to persuade my doctor to let me try Ivabradine. Hopefully the FDA will assess Ivabradine and it will eventually become available in the US. Flop

This link should take you to a thread about salt. Flop

Hi Kelli, I'm glad that you are finding useful info on the forum. There is so much to learn about POTS / autonomic problems and most doctors don't know that information so can't tell you. If you search for "24 hour urine sodium" you should get links to previous threads where I have posted about testing to see if you are taking enough salt. The search function is at the top right of the page, let me know if you can't find the info. Flop

Erik, thanks for finding the alternative link - I'll put it in this post as an active link. Alternative link to video This film is helpful because it shows how to do the muscle clenching techniques (not like one news article I found that talked about this but showed "leg crossing" as someone sat in a chair with their legs crossed!!). It also shows exactly how much her BP improves with the different techniques - the change when she squats is amazing! Flop

Earlier this year my BP suddenly shot up from 110/70 to 160/120. My cardiologist blamed the fact that I am now overweight but I had steadily gained weight over 3 years so that didn't make sense to me. It has now settled to an average of 125/90 but I still feel awful when I stand up. Flop