flop

I've never heard of being able to "disengage the sympatheric nervous system". However putting your legs up definately helps us as it allows the blood that pools in our legs to flow back into the main circulation.

Seeing the recent thread about betablockers and asthma got me thinking again about other rate controlling medications. I was wondering if anyone was taking other types of meds to control HR (Ivabradine (Procoralan), Calcium channel blockers eg Verapamil or Diltiazem)? Does doctorguest or anyone else know if there has been any studies / case reports of patients with POTS taking other rate controlling medications? Flop

I have the combination of POTS, asthma, eczema and allergic rhinits. Of the allergies it is the hayfever that is the worst and I have needed to take steroid tablets the last two summers. My asthma has been bad in the past (~8years ago) but now it doesn't bother me unless I get an infection (needed home nebs over the winter as I had pneumonia), infact I haven't touched an inhaler at all for weeks. My cardiologist had a discussion with a respiratory physician before deciding to start me on a beta-blocker. They choose bisoprolol which is cardiac selective (is acts more on the beta1 receptors in the heart/blood vessels than it does on the beta2 receptors in the lungs). The cardiac selective betablockers are safer than the non-selective ones but they shouldn't be considered "safe" in asthmatics. I think that it is up to your doctors to weigh the risk against the benefits in each person's individual case. Personally if I had allergies severe enough to need to use an epi-pen I would be very wary of trying a betablocker. There are other drugs that can limit heart rate, I'll start a separate topic .... Flop

I've bought some long loose / floaty skirts to wear (with my compression underneath) when it gets hot over here. My compression stockings are black so they are going to look rather odd with summer skirts but never mind. I'd rather be looked at for weird socks than for passing out. Flop

Sorry you had to face an ER trip for this pain and don't have an answer. Often ER docs just want to make sure that there isn't something that is an emergency going on (like an acute MI / heart attack). Once they are happy that the pain isn't dangerous to you they often let you go. You might be better following this up with your PCP, also ask your PCP to advise you when you should go to the ER - they might be able to list some things that would need an urgent check and others that you can safely leave alone. I hope the pain settles and doesn't bother you anymore. Having something like chest pain worries anyone, but it is worse if it triggers your anxiety. You need to work out a keep calm plan so you don't end up in a cycle of pain and anxiety chasing each other. Flop

My Cardiologist prescribed salt tablets for me after doing a 24 hour urine collection which showed low sodium levels. (There is a research paper by Prof Hainsworth about sodium loading in POTS). He put me on slow sodium 600mg tablets - ten a day (= 6g sodium per day). They are round white shiny coated tablets, don't taste of anything and slide down easily. I haven't noticed any stomach problems with them (even when I have cheated and swallowed all 10 with just a small glass of juice). You have to drink a lot of water with them. I found that they helped a lot. If you are on florinef / fludrocortisone it is important to have an adequate sodium intake as the florinef makes you retain water by reabsorbing sodium in the kidneys. I have come off the slow sodium a couple of times but always needed to go back on it. My cardiologist wants me to stop them again as he says the medical evidence is only to load with sodium for three months then stop them. I have compromised with him and have cut my dose back a lot to see if I am ok on a smaller dose. Whatever method you choose to increase your sodium intake, try to keep an eye on how much you are taking - you don't want to overdo it and make yourself ill. Flop

Dennis, EDS is short for Ehlers-Danlos Syndrome which is a condition of faulty collagen (one of the connective tissues) due to defects in certain genes. There are several different types of EDS eg hypermobility, vascular etc. Try a wikipedia search for a quick source of further information. There seem to be a lot of people on here with both POTS and EDS and I'm sure that there must be a connection but I don't think it has been proven yet. There are also specific patient sites for EDS. Flop

Hi, beta-blockers are traditionally used to lower blood pressure and slow the heart rate. My cardiologist explained to me that the tiny dose of Bisoprolol that I take (1.25mg twice daily) does have some effect on slowing the heart rate but that in these small doses that it causes vasoconstriction in the blood vessels which reduces the blood pooling in the legs. Beta blockers for me have been the most effective med that I have been given - I was lucky and immediatelywent from daily blackouts to no blackouts at all (still very dizzy but able to sit down before I fell down). I'd advise you to talk it over with your own doctor and, if they agree, maybe try a small dose of a beta blocker under supervision and see how it suits you? Flop

I hope this doesn't add to any confusion. This is about birth control and migranes (NOT about POTS). In anyone with migrane (particularly migrane with aura or focal neurological signs) the risk of stroke associated with combined oral contraceptives is higher than it is for those without migrane. Risk is higher again if you are obese and/or smoke. Persephone - I'm suprised that you have been allowed to try birth control with your dreadful migranes, never mind doctors encouraging you to take it. You are quite right to decline further trials of birth control. Flop

Hi Danni, Welcome to our group. I'm sorry that you have a reason to need to be here but we are a friendly bunch. There are several people your age here so you should be able to have a chat about school issues with some of them. Keep standing, Flop

Hi Deucykub, I think we're both thinking along the same lines. I was wondering about central cyanosis when I asked about your tongue colour - it is good to hear that you have had a normal blood gas reading. Has anyone else got any theories? Flop

Please note this is not known - just me theorising.... The body can adjust the distribution of blood flow by dilating or constricting blood vessels (I know POTS patients can't constrict their leg blood vessels properly). In healthy people when you are hot the vessels near the skin dilate to take more warm blood to the surface to facilitate heat loss. When you are cold the blood supply to the skin is much reduced to avoid heat loss and maintain the temperature of the vital organs - this can result in your extremities - fingers, toes, ears, nose etc going blue. The blue colour is because blood becomes deoxygenated the longer it is in the peripheries (oxygenated blood is bright red, deoxygenated blood is much darker). The body can reduce blood flow to the extremities even if you aren't cold. For instance when you are upright and symptomatic your body will be trying to direct blood to your brain to keep you conscious. Perhaps if it can't stop blood pooling in the legs it tries to compensate but shutting down the blood flow to fingers etc to increase the blood pressure and make more blood available to the brain. When exerting yourself you need blood flow to the muscles so that increases the body's need for blood and also triggers shutting off flow to the extremities. Like I said this is just me postulating, if anyone has any other theories or can see flaws in my thinking please add your comments. When your lips are blue what colour is your tongue? Flop

I'd avoid pseudoephedrine - I accidentally took some (didn't realise an anti-histamine tablet contained it) and had a really horrid time. I also wouldn't waste money on branded cold/flu cures. You can make your own at home much more cheeply. Make sure you take regular paracetamol (acetaminophen) 1g 4 times a day. You can take ibuprofen as well if you need more pain relief or still have a temperature. To soothe make up this hot drink - several teaspoons of honey, slices of fresh lemon, teaspoon of lemon juice, peeled and finely chopped fresh root ginger, add hot water and stir well. Mum makes it with crushed garlick in it as well - doesn't taste as nice but good if you don't mind smelling of garlick. If you are really congested there are a few tricks to try. The first is the best but please be careful - don't try it if you are very sensitive to heat. Pour some hot water (not quite boiling) into a mixing bowl, add a couple of drops of olbas oil to the water, carefully place your face above the bowl and put a towel over your head and the bowl to trap the steam. Gently inhale the steam through your nose and have a box of tissues handy. I really can't tolerate the above anymore, I modify it by making the mixture in a cup and holding it under my nose and sniffing the steam. For those that are really heat intolerant you can use an oil burner to heat water with olbas oil above a tealight candle in the room. (I don't know if Olbas oil is available elsewhere in the world - it is basically a strong smelling herbal oil to relieve congestion, most chemists or health shops sould have something similar). Hope this helps and you are feeling better soon! Flop

Hi Melissa, I'm hoping that your pain is abating now and you start to feel a bit more like yourself as they reduce your pain meds. It's great that you were able to talk to Emily - we all really appreciate any snippets of information on how things are with you, and are always hoping for news of improvements :-) Hugs and best wishes, Flop

DoctorGuest, thank you very much for highlighting such an important issue. I wish that reading these sort of articles was compulsory for doctors rather than them being able to choose topics of interest. I feel that the second story of the pain/depression cycle is more commonly identified than the chronic illness/depression scenario. I wish that when a patient with a chronic illness was diagnosed with depression that others would understand that it is living with the chronic illness that has triggered the depression and not that "having depression shows that you are a psychiatric patient and therefore all of your problems must be psychiatric/psychosomatic". I also think that the issue of depression in chronic disease is different to the previously hotly debated topic of using antidepressants to treat the actual chronic disease, rather than an accompanying depression. Doctors need to understand that: some of us take antidepressants for depression; some take them to treat their POTS; some take them for both POTS and depression; and there are a lot of POTS patients with undiagnosed depression. I think that most "normal" people would end up depressed if they had to continually deal with the symptoms faced by many of us on a daily basis. Rant over, Flop

I've had acne for years too. It must have started when I was about 12 years old with slightly oily skin and spots. I first got treated when I went to university at 18 years - I had several courses of oral antibiotics for 6 months at a time with various creams and lotions in between the tablets. Whilst on antibiotic tablets my skin was reasonable but as soon as I stopped them the spots came back. My breakthrough was when I mentioned to my GP that my spots were cyclical and that I also had heavy irregular periods. She put me on Dianette which is a type of birth control pill that also contains cyproterone which lowers your testosterone levels. As mentioned above contraceptive pills aren't suitable for everyone but they have helped me. I had a couple of years off Dianette and am now back on it again, still have lots of blackheads but hardly any actual spots and my skin is much less oily. Other people have mentioned Florinef as a cause of acne. All steroids can have the side-effect of causing acne but personally I didn't see any worsening of my acne whan I started on Florinef. Neutrogena make a really good range of face washes etc called "Visably Clear", unfortunately thay have stopped selling the shower / body wash which is especially good for my skin. Flop

Pott's disease is tuberculosis (TB) infection of the spine. Quite different to POTS (Postural Orthostatic Tachycardia Syndrome). Mayo clinic is a good place to be if you have any sort of unusual or complicated illness so hopefully her doctors there will soon work out what is wrong and what treatment to try first. Flop

Can you get someone to watch over you as you go to sleep - they could describe what they see in your breathing to your doctor.

Thanks for the update Emily. I'm glad to hear that she has made it through the surgery ok. Was is a Meckel's diverticulum that they found and removed? Lets hope that the next part of her recovery goes smoothly and that the pain settles rapidly so that she can get back to her own fishbowl asap. Thinking of you Melissa, Flop

Hi Nolie, thanks for posting and letting us know how you are doing. I think that any chronic illness can lead to depression but for some reason I think POTS seems to be particularly bed for it - perhaps because we are so misunderstood and frustrated? I hope the change to cymbalta helps to improve your symptoms. I'm glad that you had a good day and your walk with the family. Hopefully as the cymbalta kicks in over the next few weeks you will have more of the good days and less of the low ones. Let us know how you get on, ((((((HUGS)))))) Flop

Hi Persephone, sorry to hear you're having a rough time after your procedure. Sorry I can't give any advice but here are some ((((((HUGS)))))). I don't know what they would have injected you with but I guess it was / included a local anaesthetic. Local anaesthetic always makes me feel dreadful and my cardiologist told me that POTS patients often react to local. I hope the side-effects wear off quickly and that you then find that it helps your migranes, Flop

Karyn - you guessed correctly, doctorguest is a physician. This is quoted from an earlier thread and was posted by MightyMouse: "I just wanted to say that our new member, doctorguest is a medical doctor who cares very much for dysautonomia patients and specializes in treating them. This doctor has helped DINET out A LOT and we are grateful for that... and appreciate the participation of all members here, new and veteran". Flop

Do you get any warning at all before you pass out? I found that tilt training at home taught me to recognise the symptoms of an impending faint. I would only get a second or twos notice but I would try to sit as fast as possible - sort of letting my legs buckle under me so I was in a heap on the floor. At different stages of my POTS I have had different symptoms. Last year I would feel really dizzy but I could prevent the actual faint by crossing my legs, clenching the muscles in my legs and buttocks and linking my fingers together and pulling my arms appart really hard. This seemed to raise my BP enough to get my vision back and let me get to somewhere safe to sit down. I realise that everyones symptoms are different and you might have already tried those methods but if not they are worth a go. Most of my injuries following blackouts have been caused by hitting my head on things (don't know if you read the post where I described fainting in the bathroom at work, falling backwards into a cubicle and hitting the toilet bowl so hard I cracked it right through?). At home I try to have as little furniture as possible. I have found that table edges/corners are awful. I found one trick though - using the foam insulation / lagging that you can get for water pipes and slotting it onto the deges of the table for a bit of padding. Hope your back gets better soon, Flop

Melissa, it was really good to see your post. I'm glad that you are coming to the end of this latest course of antibiotics. I'm looking forward to seeing you post from your own fishbowl and hearing about you being reunited with your kitty. Unusual friendship that - a fish and a cat, I hope you don't have a Tom and Jerry relationship. Best wishes, Flop

It is interesting about the MRIs scrambling the loop recorder. The first MRI completely scrambled my reveal and they had to completely reset it and all the parameter, gain and everything. I had my second MRI a couple of weeks ago and went recently to get the reveal reprogrammed - it was working fine, didn't need resetting or anything. Seemed bizzare as both scans were done in the same scanner and both were bits of my head.