flop

Oops, it took me so long to type that last post that Julie had "answered" before I posted it.

Hi, Clarityn is a brand name for Loratadine, I don't find it works for me. I've done a bit of a search for UK antihistamines: The First name is the generic drug name, the names in brackets are brand names. OTC = over the counter, POM = prescription only medicine. Non-Sedating: Acrivastine (Benadryl Allergy Relief) OTC Cetirizine (Zirtek + others) OTC Desloratidine (Neoclarityn) POM Fexofenadine (Telfast) POM Levocetirizine (Xyzal) POM Loratidine (Clarityn + others) OTC Mizolastine (Mizollen) POM Sedating: Alimemazine (Vallergan) POM Chlorphenamine (Piriton + others) OTC Clemastine (Tavegil) OTC Cyproheptadine (Periactin) OTC Hydroxyzine (Atarax + others) POM Ketotifen (Zaditen) POM Promethazine (Phenergan) OTC Wow - that seems to be a lot of antihistamines. I wonder which of those are available outside the UK? I have previously had benefit from Terfenadine (no longer available in the UK), Fexofenadine and Cetirizine but they just don't provide lasting relief from the itching. I think that the Acrivastine is better because you take it every 8 hours, I can put up with 1-2 hours of itching but not 10 hours+. Anyway - this topic has drifted away from the original problem of facial hives, how are you getting on Julie? Flop

Oh Ami - I'm so sorry to hear what happened I guess your body just couldn't cope without sleep any longer and forced you to lie down? Why your body has to make you vomit though - it jut seems so unfair! I hope that all that 'being out of it' allowed you to rest and recover a bit, pity there wasn't a less dramatic way for you to get some sleep. How are you doing now? Hopefully a bit better than last week, Flop

Patti - than you so much for posting. It sounds like Chrissy had exactly the same surgery that I'm having - it is so good to know that she has come through it with no major problems. I'm not too worried about the surgery itself as I know it is done regularly, it is more the affect of the anaesthetic on my POTS. I have been having nightmares imagining that I am completely unable to stand up post-op. I can only stand for about 2 minutes now and am worried about simple things like getting to the bathroom without collapsing. I hate bedpans and want to get up as soon as I can after the surgery. My cardiologist has always told me that I must never rest in bed if I am ill as it will lead to rapid deconditioning. Thank you to everyone who has posted on here or read the thread and thought about me even if you haven't had the energy to post. It really helps knowing that there are friends on the forum who understand my problems and anxieties. I will check in here before I go to the hospital on Tuesday morning and a non-POTSy friend reads the forum and will keep me up-to-date whilst I'm recovering. Flop

Nina - you just reminded me about anti-itching creams. The dermatologists over here in the UK recommend 1% menthol in aqueous cream. I have been able to buy this over the counter at a pharmacy - they have made it up for me for just a few pounds, or you can buy menthol crystals and mix your own (be careful not to make it too strong). The menthol really seems to cool the skin which relieves the itching. Be careful not to put menthol too close to your eyes though - it will make them sting like crazy! Sorry to hear that you can't get some of the modern antihistmanies in the US that we have in the UK - I always thought that you guys got meds before us Brits. Flop

Nina, I hate to disagree with you, and perhaps what I've found is only on sale in the UK? Over here Benadryl sell several totally differnt antihistamines all under the same brand name. Ah - have just found it on Wikipedia: In the US Benadryl is (as you correctly said) diphenhydramine (a 1st generation and hence sedating antihistamine) In the UK they sell: Benadryl - Diphenhydramine, Benadryl Allergy Relief - Acrivastine Benadryl Once A Day - Cetirazine Confusing - 3 totally different antihistamines under the same brand name. Cetirazine is also sold under the brand name of Zirtek and many own-brands too. The antihistamine that I find so useful is Acrivastine - I wonder if that is available in the US? Sorry for any confusion from my first post - I didn't realise that a bit of water inbetween us could make such a difference to meds! Flop

I seem to pick up every bug going arround too. I have recently had a chest infection that started in December and took 2 months to clear (turned out to be pseudomonas pneumonia - healthy people don't get pseudomonas). A friend with POTS has trouble with recurrent ear infections. Does anyone else have this problem too?

My job is a post-graduate training post so we are on short term (1-2 year) contracts to gain experience of different fields of work and work up the career ladder gaining experience and qualifications on the way. If I get this job on Monday (won't find out for a month!) it should be my last training post before I can apply for a permanent job and settle down (hopefully part-time). Flop

Sorry you've had such a bad experience with this doctor. I promise you not all doctors are like this but so many of them just don't understand POTS. Even those who know about POTS often don't realise what living with the condition is actually like and how it impacts on your whole life. I'd try the meds he/she has suggested and see if they help. Often a specialist such as a cardiologist will feel that symptoms such as leg pain are nothing to do with their speciality so won't have anything to do with them. If you can manage to ignore the drs attitude problem for a couple more visits I'd wait and see if they can get your meds sorted to improve your health. If not then look for another cardiologist. The problem with that is that a lot of cardiologists seem to have the same negative / dissmissive attitude and constantly switching doctors can be demoralising as well as getting you a reputation for being a difficult patient which can make their attitude towards you even worse. Of course it should be them who have to change not you but not many of us are lucky enough to find that perfect doctor. Here's to physician education! Flop

Thank you for your support, all thoughts and prayers are greatfully received. Lisa - once I recover I'll try to PM you so we can chat about sinus surgery if you like? I'm having my sinuses done as well as a septoplasty and submucous diathermy to my turbinates. You might have to send me a message to remind me to contact you though - brain fog means that I have a memory like a sieve! I'm hoping to be out of hospital at the weekend but I may be able to post from hospital if I am well enough once I am on a ward with bedside TV / internet. Best wishes to anyone else having treatment this week. Flop

Hi, could everyone please keep their fingers crossed for me on Monday? I work full time at the moment but in my career in the UK we are on fairly short contracts. My contract runs out in July so am looking for a post to start then. I have a job interview/assessment on Monday. I have already passed a written entrance exam for this job and now have been shortlisted to attend for further assessments. It will include written work, role-plays with actors being videotaped (cringe) and group tasks to assess my communication, management and team working skills. I did tick the box to say that I was disabled and that I had a chronic health condition but other than that no-one there will know about my POTS. At least we will be sitting down for all of the assessments, I just hope that there will be chairs in the waiting areas. The competition is going to be really tough as there are still 6 applicants for every post at this 3rd stage of the application. It's all going on from 1-4pm UK time so if anyone is up please spare me a thought. At least I have my surgery on Tuesday to keep my thoughts occupied with. Flop

I don't have hives but do get really bad nasal and oropharyngeal itching from allergies. I found that after a few months that Zirtek stopped working for me. I have tried most antihistamines but am currently having most success with Acrivastine. It is sold in the UK under the brandname of Benadryl (they sell 3 different antihistamines all called benadryl!) it is the one that you take 3 times a day. I've found that it works really quicky on the itch (within 10 minutes). Which Benadryl are you using, is it one of the older sedating kind? Flop

Hi Everyone, I'me being admitted to hospital on Tuesday for ENT surgery and am starting to get really nervous. I was hoping that my cardiologist would be there at the hospital but he has gone off sick himself! He has sent a letter to the anaesthetist explaining my POTS and about gving me IV fluids pre-op and things but it's not quite the same as knowing that they could give him a call if needed. I had awful trouble trying to get to pre-admissions clinic early as everyone thinks that I should be a fit young adult going for a routine operation so should have no problems. I had phoned the anaesthetic department to notify them of my condition but couldn't get past the secretary. I have now spoken to one of the senior anaesthetists on the phone and it will be a consultant doing my anaesthetic but I am still really nervous. His final thing to calm me down was to tell me not to worry as they know that my BP and HR will be erratic they will be ready with different drugs and IV fluids but that they will make sure the crash cart stays right by me incase anything goes wrong!!!! If I didn't need the surgery I wouldn't have it but have terrible trouble with nose-bleeds and sinus infections. I have lost count of the number of times I have had my nose cauterised at the hospital in the last year (too many ENT clinic visits). The last major bleed I had needed me to have 6 units of blood transfused. I am on iron tablets to try to keep my haemoglobin within range but it is always low due to the repeated bleeds. My cardiologist (who I thought would be against any general anaesthetic) told me that it clearly needed fixing and I should just get on with it! I have only had a general anaesthetic once before (before I developed POTS) and must have dropped my BP as I woke up with 2 large IVs in my arms and lots of empty IV fluid bags hanging on the drip stands attached to my trolley. At least when I told the anaesthetist about that he took me more seriously. I'm probably just getting myself worked up but would appreciate hearing from anyone who has had a general anaesthetic recently. Thanks, Flop

It is well recognised that beta-blockers (I see you are on nadolol) can cause fatigue as a side effect. I am not for a moment advocating stopping your beta-blocker as I know I couldn't function without mine. It might be worth thinking back is your fatigue got worse or improved with any of your meds? I'm taking Paroxetine (an SSRI) for my POTS. The first fer weeks it made me feel hyper-alert and full of energy (which was great). Then I felt really tired with it. Now so long as I get enough sleep I feel quite alert during the day - as though my body has got used to the Paroxetine. There are other SSRIs out there that have fewer side-effects than Paroxetine (I didn't want to go on Paroxetine but my cardiologist said it was the only SSRI with medical evidence of efficacy in POTS) it may be worth discussing an SSRI with your doctors or see if they have any other ideas. I've also seen some research about Ritalin and similar meds for POTS but I haven't read anything thoroughly so couldn't really comment on them. Flop

It is supposed to be quite normal to have these jerking movements when you are almost asleep - it is something to do with the brain electrical activity patterns changing as we go to sleep. People both with and without POTS experience them. Shaking episodes with a fever (I can feel really cold when I have a fever) are called "rigors" and are related to the body's temperature being abnormal. Flop

I have recently become addicted to a game called Zookeeper on my Nintendo DS. Very simple but time consuming. Also portable so ideal for waiting rooms at the hospital and on the train too. Flop

((((((HUGS))))))

Hi, welcome to the forum. I've had a lot of help and advice from other members - we all help each other out. Sorry to hear that you have got POTS but at least now you know what's up you can start learning how to adapt and try to minimize your symptoms. Glad to hear that you've got a new job - hope it continues to go well for you. Have you voted in the "job" poll that cardiactec has started? Flop

Lina, I started on half a tablet of fludro (50 micrograms) and every 4 weeks increased by half a tablet until I got to the 300micrograms (3 tablets) that I have been taking for over 2 years. That is the maximum dose that my cardio will allow. I suspect that your BP will drop over the next few weeks as the fludro works it's way out of your system. If it does ask your dr about going back on fludro but very slowly increasing the dose until you find the level that suits you. Flop

Hi Liz, I've also had a short synacthen test done. As Persephone said it is to test for Addison's disease (underactive adrenal glands). There are a couple of different ways to do it depending on the doctor or lab doing the test. When I had mine done they put in an IV cannula and took a baseline blood sample to measure serum cortisol. Then they give you an IM injection of synacthen (a synthetic ACTH - the hormone that causes the adrenal glands to secrete cortisol). They then take either 1 or 2 further blood samples at 30 / 60 mins after the IM injection. If your baseline cortisol is very low or if it fails to rise by more than a certain amount then the test is positive suggesting that the patient has Addison's disease. The results usually take a day or so to come back. Flop

Ami, I had trouble finding comfortable positions in which to sleep. I can't lie on my back as it causes my reveal device to press up through the scar on my chest wall which is really painful. Sleeping on my front with my arms above my head is comfortable but I wake after about 30mins with dead arms / pins and needles so that isn't really an option either. Sleeping on my side used to give me pain in by lumbar spine, hips and knees from the twisted position that you end up in. I have solved most of my problems by 1) buying a foam mattress topper (Ikea ?50) which softens my otherwise very firm bed. 2) buying a giant "body pillow" 1.5" x 5" (Dunelm Mill ?15). By sleeping on my side in the recovery position but with my top leg curled on the body pillow and hugging the body pillow with both arms I seem to sleep quite well. I find that this is a position that doesn't cause any of my joints to be twisted out of their natural alignment. I often end up with my head on the body pillow too. If you want to roll over you have to wake up enough to drag the body pillow over to your other side but then I get another few hours sleep. It does sound like your pain is much more severe than mine was but it may be worth trying a body pillow. I found that several ordinary pillows were no good as they always moved and were never the correct height to support me. ((((((HUGS)))))) and here's to wishing you a better night's sleep asap, Flop

I struggle to describe fatigue too. I usually tell people that after getting home from work on a Friday that I go to bed at 7pm and usually sleep until 2pm on Saturday and still feel tired. I then ask them to imagine what it must be like for me the 1 in 4 weekends that I have to work until 9:30pm on Friday and then 9-5pm on Saturday and Sunday followed by another whole 5 days at work. As my colleagues understand our draining shift patterns this usually helps them to understand (although I work fewer hours than my colleagues and no longer work weeks of nights). Being tired is different to being fatigued! Tiredness is relieved by sleep, fatigue is not. Flop

SSRIs, I have previously taken both tricyclics and an SNRI (selective noradrenaline reuptake inhibitor) without too many side effects other than tachycardia (years before POTS was an issue). The first couple of weeks on Paroxetine were horrid - as I said earlier should have started on a baby dose not the full whack - but now I don't notice any side-effects other than wakefulness after taking it. As I take the dose in the morning I am wakeful at work and am sleeping much better too. Ultimately you should make your own decision, I'm not trying to persuade you onto prescription meds just relaying my experience and knowledge. Take care, Flop

Prednisolone - it definitly made my POTS symptoms improve dramatically (don't know if it helps POTS or if my allergies trigger POTS). The problem is that no doctor will support you taking it for POTS and it has horrible long term side-effects. Thinning of the skin, thinning of the bones, immunosuppression, adrenal suppression, weight gain, acne....I could go on. I took it two years running for 8 and 6 months respectively. Coming off pred was really hard as the POTS flared everytime I dropped the dose. Even by taking eg 7,7,7,7,7,7,7,6,7,6,7,6,7,6,6,6,6... I felt awful for 4 days a week. I am vowing to avoid the stuff this summer and just try to live with the allergies and the effect they have on my POTS. Flop

Hi Wareagle, don't write off the cipro immediately. I have been luck to stay away from UTIs for over a year (fully agree with willows advice) but have recently been laid low with a nasty chest infection / pneumonia. I had 5 lots of antibiotics with no lasting improvement in my chest then got microbiology results back showing that ciprofloxacin was the only oral antibiotic that the bug was sensitive to. I took 2 weeks of cipro with no real side-effects except for some mild nausea (better if I ate something with the tablet). Keep drinking buckets of water and cranberry juice. Hope you're feeling better soon, Flop