flop

Hi Janey, I live in Chester (North West England). I learnt the hard way that my usual trick to deal with dizzy spells (clenching the muscles in the lower half of my body) is not a good idea when ice skating. It caused my legs to straighten which moved my balance point further back on my skates - my feet shot forwards from under me and bang down I went. Pity because I can tolerate being upright much more easily in the cold at the ice rink. Flop

The effect on heart rate is usually from the first tablet. It might take a couple of weeks for your body to adjust to the slower HR so the full benefit may develop over that time. Flop

Hi, welcome to the forum. Developing POTS after an infection is how many people join our family. Sounds like you have had a rough time so I hope you start to feel a bit better soon. It is difficult to predict the course of POTS as it is actually the name for a group of symptoms (a syndrome) rather than a specific disease. There are many causes of POTS but the doctors doing research are still in the early stages of working out the causes and sub-types / groups. In general people who develop POTS after an infection seem to be more likely to recover than those of us with problems such as Ehlers-Danlos Syndrome as a contributing factor. As you have already discovered staying well hydrated is one of the key factors in feeling better. Drinking lots of fluids along with a high salt diet helps to increase your blood volume, this keeps your BP more stable and helps reduce the tachycardia on standing. You may already know that fludrocortisone works to increase the re-absorption of sodium in the kidney. As the sodium moves back into the blood osmosis means that water follows the sodium. This is why it is important to take plenty of salt and water to get the maximum benefit from fludrocortisone. In the early stages of recovery from pneumonia you will need to rest. However I would encourage you to sit out of bed in a chair when you can. My cardiologist says that it us important not to have too much bed rest as the body becomes acustomed to lying flat and re-sets it's blood pressure sensors to the lying down position, this then makes being upright even harder for our bodies. Aim for a mixture of lying, sitting and standing/walking to prevent deconditioning. I hope you start to feel a bit better soon, Flop

Thanks for all the messages of support, it is wonderful to have somewhere where people understand and care (rather than just laughing at me). My typing is rather slow and being done with one finger on my iPod touch (easier to handle than my laptop). Luckily being hypermobile (due to EDS) means that I can get myself dressed but I can't do simple things like make a cup of tea or a sandwich for myself. I was given a fantastic stocking-donning aid when I broke the first wrist. It is called an Acti-Glide (in the UK you can get them on prescription from your GP). It is basically a special slide-sheet that laces into a cone with a long plastic pin. You put your foot inside and slide the stocking up over it, then pull out the pin and pull the sheet up your leg smoothing the stocking as you go. When I think of the years I have spent wrestling with compression stockings it is amazing that I can now put on 40mmHg compression myself with 2 broken wrists!!! Flop

Hi everyone, just wanted to let you know that I am lurking and reading your posts but can't reply as much as usual. I've had a bit of a strange few weeks starting with a dizzy episode whilst ice-skating on 4th February. That lead to a colles' fracture of my right wrist and a general anaesthetic to have it manipulated and pinned in place. Unfortunately the GA and being in pain didn't agree too well with my POTS and triggered a flare of symptoms with rather a lot of syncopal episodes. One of my faints in hospital lead to a dislocated right shoulder. Then I developed a weird rash with temperature, shortness of breath, joint pains and protein in my urine. The dermatologist wasn't worried about the rash but I did my usual internet self-diagnosis and want to rule out vasculitis. My GP agrees and has refered me to a rheumatologist, hopefully the tests will be clear but I'd rather know that there is nothing weird going on with my body (well nothing any more weird than POTS anyway!). I managed to escape from the hospital after 2 weeks and have just been taking things easy at home. On Monday I was at the JobCentre (trying to explain why the forms for my disability living allowance renewal claim were late) and ended up fainting again. I was taken to A&E by paramedics and given 3 litres of IV fluids (felt much better and my HR had come down from 140 to 90 after the fluids). I was allowed home and advised to rest. Over the next couple of days my left wrist/thumb were getting more sore and I have impressive bruising on my wrist and right round the base of my thumb. Yesterday I gave in and went to see my GP - he suspected a fracture of the scaphoid bone and sent me to the local hospital. The first x-rays are clear but they still suspect a fracture so I have a cast on for 10 days then will have repeat x-rays. So I'm rather stuck at the moment with both wrists in plaster casts! Flop

If you are feeling short of breath and wheezy when taking a beta-blocker please contact your doctor for advice. Some people discover that they have asthma when taking a BB, wheezing is a classic sign of asthma. You probably need to try a diffferent medication instead of the propranolol but in the mean time if you have breathing problems please get treatment and go to the ER if it gets bad. Flop

When I am relatively well I like to have a cool shower every morning. I can't have a bath very often as even with tepid water I feel really drained and usually sweat like crazy afterwards which messes up the reason for having a bath in the first place! During my recent hospital stay I did enjoy having several baths using their special bath chair hoist. Being slowly lifted out of the water in a sitting position rather than having to stand up was fantastic! Since escaping from hospital I have only managed 1 shower - urgh I know! My wonderful cheat factor is feminine hygiene wipes. I use one all over to get off sweat and antiperspirant before having a wash with a flannel. The wipes seem to help me feel much fresher especially under my arms. Hairwashing really drains me so I just don't do it myself anymore. About once a week I go to the hairdresser for a blowdry (cheaper than paying for a carer to help ne at home). My hair looks fine for a few days then I give it a boost with some dry shampoo spray or tie it in a ponytail. Flop

Take care of yourself miss mouse - even mighty people need a rest after what you've been through! Hope you are feeling better soon and all the paperwork gets sorted. Flop

Hi Daisy, are you taking midodrine? One of the classic side effects of midodrine is to cause tingling of the scalp. I guess that alteration in blood flow to the scalp would be the reason for the midodrine side effect so if you are not on midodrine it may still be due to changes on blood flow. Flop

Sorry I'm posting from my iPod (it is 5am in the UK but I can't sleep) and I can't scroll down in the window to edit or finish my post - I'll tidy it up from my laptop tomorrow. I would write to the doctor in charge of your recent testing and emphasise that the meds you are taking are what prevents you showing responses like you did in your original TTT. Ask if they took the meds into consideration when telling you that you don't have POTS despite previous tests showing POTS. About the small fiber neuropathy - has these been proven by biopsy (I think that biopsy is the only way to definitively prove SFN even though other tests can suggest that it is present). Also explain that the reason for your visit was seeking better medication to improve your ability to function and that now your diagnosis has been changed that you don't know where you stand. It is possible that the doctor reporting your tests doesn't even realise that you were on medication at the time. Hope you get some answers, Flop

AFAIK the criteria for POTS is a rise in HR of 30bpm or more OR a rise in HR to more than 120/min. You don't have to have both, eg HR of 50 to 85 still fits the criteria for POTS. Some doctors add to the definition that the rise in HR must be without a drop in BP but many of us do have a drop in BP too and are still diagnosed with POTS. My first ever TTT showed HR 85 to 170 and BP 135/80 to 96/90. I was immediately diagnosed with POTS and started on medication. When I went to London for further autonomic testing I had to stop my beta-blocker and midodrine (the left me on fludrocortisone). Due to the fludro and water/salt loading my numbers were much better than on my first two TTT at home but the doctor took the medication into account and wrote in his report that the responses were blunted due to my increased blood volume from medication. About the episode with very low BP, technically if you didn't loose consciousness then it wasn't an actual faint but a pre-faint. For clarification: NCS = neurocardiogenic syncope (vagal nerve causing loss of consciousness) NMH = neurally mediated hypotension (vagal nerve causing low BP) faint = syncope = NCS (all 3 words mean exactly the same). NMH (Neuro mediated hypotension) = big drop in BP, it doesn't actually mean fainting but I know Dr Rowe uses NMH to mean the same as NCS.

Oh Ami, hugs!!!! I hope that your hands heal up quickly. Quite often plastics want too see wounds themselves or have a plastics nurse dress them so that they can be sure that nothing needs doing (district nurses are fab but don't often see these sort of wounds so don't have anything to compare them with). I have been unable to lift hot pans for a long time now (my wrists just won't take the weight). Here's a trick I invented - buy a metal chip frying basket and put the raw veggies or pasta in the basket then put the whole lot into the pan of boiling water. When the veggies are cooked, lift the basket and let the water drain into the pan. You can let the pan go cold then move it with both hands and a better grip without needing a cloth or risking scalds. Sorry it is shutting the stable door after the horse has bolted :-( Flop

Bradycardia literally means slow heart rate. You can have sinus bradycardia (normal regular rhythm but slow) or you could have a bradyarrhythmia (slow abnormal rhythm). One of the most common reasons to feel palpitations is either being unusually aware of a normal rhythm (more likely when you are either tachycardic or bradycardic) or when you are having extra beats (PVCs or PACs). Since this symptom is new you should get it checked out. Try calling your cardiologist, if they can't see you then see your PCP or go to the ER. Hopefully having an ECG (EKG) recorded whilst you are resting and bradycardic will show if there is anything going on. Hope you feel better soon, Flop

Hi Julie, I haven't actually seen any evidence that SSRIs are bad for POTS it is just that is what the autonomic doctor (collegue of Prof Mathis) told me in clinic. He actually advised me to stop taking: paroxetine; codeine; paracetamol; fexofenadine (allegra); ranitidine; montelukast (singulair); salbutamol and my epi-pen. He said that they would all make my POTS worse. I explained that untreated allergies made my POTS ten times worse than it is now and that being in pain also causes a POTS flare. Flop

Just taking a regular BP reading wouldn't have the same effect. With a normal reading the cuff only goes up a certain amount above our systolic pressure and it starts to deflate almost immediately. Having a BP cuff at 200mmHg is really painful, but keeping it at that pressure for a full 5 minutes must be horrid! Flop

I'm sorry that you haven't had the response you were hoping for from the doctor's staff. On a separate theme, you mention possible MCAD if you are having problems with mast cells or allergies then it is probably wise to stay well away from beta-blockers. Beta blockers can worsen allergic symptoms and even prevent epi-pens (adrenaline injections) from working properly if you have a serious reaction (anaphylaxis). This may explain why they weren't suggested as a treatment option for you. In the UK we don't usually have any contact with our consultants team other than when we are at an appointment so I am used to waiting 6 months to report back to the dr if a medication worked or not. It doesn't make the frustration any easier but I do understand what you are going through. I remember reading that some people in the US send faxes to their doctors office. Perhaps if you sent a fax clearly listing your current medication and your experience with provigil then at least something on paper will get into your file. Flop

For those of you not on facebook Teri has posted a couple of pictures of Nina. She looks relatively comfortable in her hospital bed but has a large bruise from the steering wheel on her abdomen. I'm sure that the doctors will want to observe her for a day or two to ensure that there aren't any internal injuries. Sending healing hugs to you ((((((Nina)))))) Flop

I'm so sorry to hear about what you have been put through. I know some doctors are now saying that SSRIs like Paxil (Paroxetine) are not good for people with POTS. I have been on Paroxetine, prescribed by my cardiologist for my POTS, for several years. When I saw a different consultant neurologist in London in November he told me that POTSwise I should get off the paroxetine. He didn't actually get me to start weaning off because I cried during the consult and he worried that I was depressed. A year ago I had a horrible experience when the pharmacy forgot to dispense my paroxetine and I missed 6 doses without realising. It was when I started hallucinating and became almost suicidal that I thought to myself "I wonder if this could be a side-effect of paroxetine?". I went to my med bag to get the information leaflet out - whoa, no paroxetine! When I reported this to the pharmacy they said it was a serious error and reported it to the department of health. No-one should ever attempt to suddenly stop taking paroxetine. It is perfectly possible to stop it safely if the dose is tappered very slowly (using liquid medication is best as you can make much smaller decremental steps). You need to get an emergency supply of paroxetine now to halt the withdrawal that you are experiencing. I would contact your PCP or the doctor who stopped the script. If you explain the situation they should give you enough pills to cover until you can have a proper consult and decide if you want to be on the med or not. If you have no luck with the doctors then you should go to the ER, feeling as bad as you do right now is an emergency and it can be easily treated. Hope you get some help and feel better soon, Flop

Drinking cold water is helpful for relieving symptoms. When the cold water hits your stomach the body doesn't want the blood to get cool (as it would lower the body temperature) so it diverts blood away from the stomach - this leaves more blood available for our brains. Flop

I've used nasal steroids in sprays on and off for many years. For me the only downside was that you can taste the medicine after squirting it up your nose so have a flavoured drink handy! I haven't had any ANS side-effects at all. At the moment I am using steroid nasal drops (higher dose than the sprays) and can really feel the improvement in my allergies. As you are flying soon I would start using the spray right away and use it everyday until you get home again. Steroids work by reducing inflammation but they need to be used for at least a week to get the full benefit and then daily to keep the swelling down. Hopefully they will reduce the swelling of your eustacian tubes and let your ears equalise normally. Flop

Hugs ((((((((((Tammy)))))))))) You are already helping to look after your body be drinking extra water. Keep up with lots of fluids, add some salt or salty snacks or try a sports drink with electrolytes like Gatorade. Most of all let yourself rest and grieve. Flop

I'd forgotten about aloe vera juice! I bought some from the health store after my holistic health practitioner advised me that it can help calm down the digestive system (I get awful bloating and cramps). It did work for the cramps etc but I had to stop taking it as it made my BMs too soft. About 30 mls a day is enough for most people. I will advise that the plain aloe vera juice has a unique taste (I thought it was horrible!) but I got one flavoured with cranberry and it was perfectly acceptable to my taste buds (despite looking a funny colour!). I hope you find a combo of natural products that help your GI system - that is probably the best way to treat your syncope. Flop

I find that I both bloat and get more dizzy (so probably pooling blood in my splanchic circulation) after eating lots of wheat like bread or pasta. I think that when my gut is having a hard time dealing with what I have eaten (I probably have IBS) that the bloating and pooling are worse. Do your symptoms relate to what you have eaten? It might be worth keeping a diary of food, activity and symptoms to see if you can find a pattern. Flop

Hi, I'm glad you managed to find out why the assistants were complaining about you - a misunderstanding rather than a real problem. If you have other shifts where you have to do a med pass it might be sensible to speak to the nursing assistants before you start and just say "I'm going into the office to prepare all the meds before I hand them out" you can make it sound like you are telling them so that they know where to find you if they need you but really you are pointing out that you are doing the med pass your own way. Hope you don't have any more problems at work, Flop

I'm not taking a BCP right now but I have taken them a lot over the last 12 years. I took dianette for many years (it is now only available for 6 months due to it having a higher risk of DVT). More recently I have taken Yasmine, this does containe drosperinone (a weak diuretic) but it didn't seem to affect my fluid-balance (probably the fludro had a stronger effect so just over-rode the diuretic action). I generally find that I am less symptomatic from POTS when on the pill. I would love to be able to take packs back-to-back (or leave out the 7 sugar pills) to avoid having a period but my body just won't allow me to do that. I start to bleed even when still taking the pills (usually a few days before the end of the pack) so I end up having a period even if I take them all the time. Because of this frequent breakthrough bleeding I have given up on the pill for now and am just having natural cycles but having to put up with worse POTS symptoms and horrid period pains. Flop