blueskies

Hi, POTS and Mast Cell Activation Disorders are becoming frequently more linked, I've read. I was wondering what those people with Mast Cell problems do/take medication/avoid to help with their symptoms and what works best for them? And any side effects mast cell medications might cause? Any imput would be appreciated. Many thanks, blue

Have you discussed this with your doctor? If it was me I would check this out with my doctor. You mentioned that they last for hours. I get some nasty ones too and they can last longer than the average 10-20 minutes that I read about on Panic forums but I haven't experienced one that last for hours. I do get extreme anxiety either side of a panic attack and severe anxiety can be almost as bad as panic. I was told by a psychiatrist once that anxiety can be so strong that there's nothing much between severe anxiety and panic . Do you find the attacks 'peak' - stay at their peak a while and then come down a bit? If was panicking for hours I'd be checking with my doctor. I'd think it was my sympathetic nervous system is giving me a hammering, that's for sure. Thinking back, I did have a panic attack once that lasted what felt like about an hour. It was literally driving me up the wall - just a little bit. I was sitting in bed and pushing my legs hard into the bed and pressing my back hard against the wall which meant I was sort of pushing myself up the wall a bit. It was then I learnt that the old saying, 'driving me up the wall,' is based in reality. I take benzos but if I could do it all over again I probably wouldn't. But who knows? Benzodiazepams are getting a very bad name. I do know that. They are highly addictive. Easy to abuse. Although I've never abused them. I do know they help keep my autonomic nervous system a bit calmer and did from day one. My allergist also told me they usually help with anxiety that accompanies frequent histamine release.

Thank you Tachy, Corrina, jpjd59, Becia and Macca, I appreciate your thoughts and support. That you related to what I'm saying is a big help to how I'm feeling emotionally. I guess that now I'm only 2 years off 60 I have to actually realize that I'm no longer young (the mirror tells me this each time I look at it, but inside my head I still feel like my young, often uncertain self, full of expectations despite plenty of experience under my belt which gives me a certain amount of wisdom - not a lot but some .But still, I'm aging and can't expect a return to the robust health I enjoyed, and which disappeared so rapidly and suddenly a dozen years ago, anymore but rather just need to deal with what I have and hope for some improvement. And perhaps just try to take my health a little less seriously than I've become used to -- at least as much as my symptoms will let me. Macca, I'm in Sydney and I think Westmead Hospital might have the sort of set-up as Austin Hospital in Melbourne. But I'm on the other side of Sydney and have no way of getting there. I've organized my health care with most of my specialists in different parts of St. Vincent's Hospital -- they communicate with each other and are very good but only one of them decided to bulk bill medicare despite my saying to all of them (over the past 2 years) that I can't really afford to see them anymore. So I have to think this response means they aren't too worried about my health. Or perhaps it is my age they are taking into account now and really have nothing to offer me. At any rate, I'm seeing less of them now. I don't live in a part of Sydney that has GPs who bulk bill -- this means I have to travel. I used to sigh with relief when I got to the safety net level and was managing to get myself to and from appointments, but now I can't afford to see the doctors enough to get to that level anyway. And even if I could find the money for that, I don't have the money for taxis to and from, and physically, public transport is now out of the question for me. I guess I'm throwing in the towel on trying to get better from pots and I'll stick with what management responses I already have and just try to live with anything new that crops up. I am very lucky that although I live beside a major arterial road, that across that road, a short walk through a small park, I come to the harbour's edge and can sit on the grass and enjoy the most fabulous view. Maybe I need to concentrate on doing more of that. It might not do anything for my pots stuff but I might get a little bit more zen about it all while looking at a glorious harbour. blue (doing a lot of thinking aloud, or is it thinking-typing).

Hi all, I just can't afford this pots gig any more. I've had to stop exploring new avenues for answers. And I can't afford to see the doctors I already have let alone see new ones. Nor can I afford the medications I have to buy. And as I'm 58 I can't see my financial status improving in the future. I live in Australia with a public medical system sitting alongside a private one. I have private health coverage but am able to access public care but I've found that neither system compensates adequately, financially speaking, when a person has a chronic illness. It's great for something acute. An emergency, for example. I look back over the costs of my health care of the past 12 years and see how much it has cost and can see pots-wise it's cost me a lot financially with little headway made in terms of my health. Doctors, medicines, pathology, ultrasounds, mri's, endoscopies, ultrasound endoscopies etc. the list goes on and on for pots health symptoms. I don't even bother attending to other health issues anymore. I just can't afford it. As I age more health problems other than pots crop up but I just have to shrug my shoulders and ignore them. My physical abilities to get to and from medical appointments as well as my financial abilities to pay the gap payments, sometimes more than half of the account, are now severely limited. Just the other day I was at my new gp appointment and he wants me to have a whole new set of the same blood tests that were done last November done again. He has most of those results anyway and should be able to get the rest - it's all computerized. Why not make the computers do their job - either he or his secretary should be responsible for getting the results of the rest. Do I really have to explain to him that physically and financially I can't afford the drain? Even if all the blood tests were financially covered, I'm too freaking tired to put myself to the effort of doing those tests again so soon. I'd bet the part of my apartment that the bank doesn't own that nothing has changed in regard to those results in the past 4 months. I can only conclude that people poorer than I just don't get their much needed health care or it's extremely scant, at best. We are told that the situation in the U.S. is worse. My god! Is there anyone here that is not able to access health care due to financial stress? My resources have just about run out. Anyone here find that physically it's just become too much to make it to and from medical appointments. That, that is all one does, leaving no energy for something like a visit to the park or an outing to a movie. Which, for me would do me the world of good. Probably more than any good I will find at a doctors office now, in regard to pots. If I was younger I'd be up for making more effort and mortgaging more of my future, I think. What am I saying? -- I did make more effort for years and have already mortgaged much of my future. blue

I used to consume a lot of salt pre-diagnosis of pots (I also drank a heap of fluids). Hubby would lecture me at mealtimes about how bad all the salt was for me. No coincidence that I had low blood pressure readings back then. When I was diagnosed with pots my specialist told me to eat more salt and I remember thinking that it probably wasn't possible. A few years later my bp readings swung normal to high and pots specialist told me to stop eating excess salt -- but I already had stopped. My body had essentially been telling me what to do. However, I've still needed to consume a LOT of fluids each day. I'm pretty much constantly sipping water, water and milk together, or sometimes, decaf coffee. Fluid consumption has not changed. I do worry that I'm washing out the potassium my body needs, though. blue

Hi Katy, It was good, I'm happy to say. I still have 'faint echoes' of the pain I was getting before and I might sometimes accidently turn a leg in an awkward position that will cause that faint echo of pain. I just go 'ouch' and get my leg into a more comfortable position and pain resolves. My pain before op was in both legs and my bum (I could only shuffle, not walk, and I couldn't climb stairs at all eventually, I had to crawl up them). I could not twist at the waist without getting the searing pain which would make me scream (a short sharp scream, completely involuntary, when the pain caught me unawares). The pain I was getting was caused by the 'slipped' disc, and fragments of it, pressing on nerves. That's all pretty much gone except for that slight echo pain occasionally. Knock on wood. I do however get pain at the site of the now healed wound of the surgery but I've had that same sort of bearable, intermittent, pain ever since the birth of my second child, 36 years ago. She was born, and so was my back pain. It was too coincidental to be anything else but her delivery. It is completely bearable but things like vaccuming or scrubbing the bath will bring it on. A lie down afterwards gets rid of it quickly. As it has done for 36 years. The new thing is that sometimes the site of the surgery will get sore when I sit a certain way or have not exercised for a while, but not anywhere near what I think of as painful levels. blue

Hi Katybug, Three years ago I had a laminectomy done at L3-L4 level and that's nowhere as serious as the challenge you have been presented with. I do wish that I'd thought to ask, or that someone had told me, what I would experience after. Things like how I'd have to lie on my back with a tiny pillow which bought on a severe migraine that totally negated any pain from the back operation for the duration of the migraine. That a thoughtless (or harried overworked nurse) would forget to leave the 'help buzzer' near my hand so I was unable to call anyone for help, for a number of hours, while unable to move. That they'd give me self administered morphine for relief (press the button and the drug was delivered IV) -- I hate morphine, it gives me the 'horrors.' And which also meant that when I decided I couldn't tolerate the morphine anymore I was pain relief free until it had washed out of my system for long enough for me to be able to take an alternative pain relief med. Also that I would need to pee in a bed pan which I was unable to do, panicked, and agreed to a catheter which gave me my first UTI in my 56 years and which now recurs. If I'd know that a UTI would be a possible result of a catheter I would have waited longer to see if I could pee. I requested my neurosurgeon consult with my pots doc before I had surgery and as a result I was supplied with these things that would blow up around my ankles (sorry for the bad description) and then deflate which kept my blood pumping better until I was able to get up on the fourth day to shower and pee after having the catheter out. In hindsight I really needed to know what to expect straight after the op. Not just that I'd probably be able to walk pain free weeks later - which is all the neurosurgeon offered me about post op info when consulting with him before having the surgery. Many surgeries bring post operative pain and new and not very nice experiences but surgeons, I've found, often aren't real good at keeping the patient informed of this stuff. Some knowledge would have made me more prepared and feel less powerless when I was flat on my back and unable to do anything to help myself. Plus I could have made arrangements for someone to come in and feed me for the first 3 days. I was unable to see over the top of my bedtable, let alone reach the food that was left for me 3 times a day in order to eat. Day 4 was when I was well enough to sit up a bit and feed myself. I was a private patient in a private hospital in Australia -- a hospital that I'd been in before and always been okay in. This time around I was just helpless and the hospital protocol for this operation seemed severely lacking. You may have had more surgery than me -- I'd had some previously -- and know to ask these sorts of things but just thought I'd offer up my experience that would have been a lot less stressful had I'd been fully informed. And it does sound like your surgeon is a heck of a lot more forthcoming. blue

My method of taking a shower is much like TCP's. If I keep it short I can shower standing up (but no closing eyes or bending back when I shampoo or I'm going to fall -- obviously dangerous). I used to have to shower sitting on the one of those kiddy steps little children use when needing to step up to the toilet. I also used to use a hose shower head every time. Now, as long as I keep my shower short, I'm good to shower more normally. It's a rare occurance when I can have a bath. They make me nauseous and dizzy unless they are very cool which means I have to have a quick one or I'll get too cool. I used to love long soaks in the bath but that was many, many years ago. I do realize that I'm able to be flexible each day as to when I take a shower. My best time is mostly afternoons. On more challenging pots days I wait until hubby is home. Who would have thought I'd have days when I needed to be sure that someone else was in the house just to have a shower. blue

Hi Bigskyfam. I know few things for sure, but one I do know is that I'll never go near a dessert. I only have to see one in the movies or on tv and instantly, I'm thinking how I NEVER want to live there. Heat intolerance and desserts must be the worst mix. I can't imagine how cold it must get in the mountains in Montana. Years ago, when I was fairly well, I had a 24 hour stop over in Denver, Colorado and we took a bus trip up into the mountains. It was the last day the tourist buses were running before they stopped for the winter (this was a long time ago) and I had never experienced such cold. Sydney, Australia, does not experience those extremes of cold temperature. blue

Dear Freaked, I just wanted to let you know you have my empathy. Hugs to you. Blue

I get panic attacks. Since my father died a few months ago they have gotten a lot stronger and more numerous, even though he as very elderly and his death was a slow expected one. It's not that I'm aware of thinking of him when I get them though. panic attacks can be caused by thoughts we are not even aware of having (thus we feel like they come out of the blue) or by my dysfunctional autonomic nervous system and it's out of whack sympathetic and parasympathetic nervous systems. I think mine are worse at the moment because of POTS and that in the last 4 months I've experienced my father's death and moving house (with my husband's 60th birthday party a week after we moved which I felt pressured into being involved in), and having the painful experience of having teeth filled without anaesthesia because I seem to have developed a problem with dental anaesthesia , and also having a couple of teeth removed 2 weeks after that, which meant having general anaesthesia, plus I have a loved family member i'm really worried about but can't seem to help. That and worry about not being able to keep my bowels moving enough and some breakthrough migraines that are the worst I've ever had in my 58 years is enough to flatten anyone, as my darling sister reminds me, let alone flatten someone with pots. I know we all go through these sorts of trying times. I just try to remember, when in the midst of a panic attack, that it's not going to kill me. It might feel like it is, but it won't. I do worry about being out and having people see me panic and some days this is enough to keep me home if I'm feeling other potsy symptoms and sometimes it doesn't. Generally, I anxiously anticipate panic attacks a lot more than I actually have them. I've found that lying down (on a couch or bed with my feet up but my head raised and lying on my side for some reason and sipping water) will usually bring back my ability to talk properly and then breath more comfortably.. So, I have to think pots plays a part in all the panic attacks I have. blue.

I'm in Australia and although we are still having some hot days and warmish nights (for me hot, for 'average' people nights are probably just fine) but last night we had a cooler night and although it didn't help me sleep longer (am so chronically short on sleep) I was much more comfortable. I didn't even need to run the fan. I'm really looking forward to April and then on into our winter. Having heat intolerance, I'm generally more comfortable in the winter than in the summer. Rarely a bill for heating in my home. Daylight saving time ends here in early April and I can't wait. It means I might be able to get to sleep earlier and hope that will translate into sleeping an extra hour or so. blue

Krystal, that does make sense. blue

some people react to medications because of the dyes that are used to colour them. That has been my experience. I've found some dyes to be okay and some that I react to. when I see that a med is obviously dyed I'll usually reject it unless there is a good reason for taking it. Then, if it's important I take the med I will try to track down what dye is in it (over the internet or by ringing the manufacturer) and find out if it's a dye I'm okay with. Some manufacturers of the same basic med use different dyes and sometimes different strengths of the original pill will contain no dye. I think often they colour different strength pills a different colour. For example, Xanax. The 1mg has a dye in it I react to. But the 2mg one does not. I am prescribed the 2mgs pills and I break them in half or quarters. At times I've just had to take a medicine knowing the dye is going to make me feel unwell. This is not an option in the case of true allergy to dye, obviously it's dangerous to take something I'm allergic to. I'm talking about 'intolerance' and 'adverse reactions' but not allergies. I wish the manufacturers would leave medicines dye free, sweetener free and flavour free( and also preservative free when possible). I use a panadol (acetaminophen/Tylenol in the U.S) product that comes in coloured capsules. I take the capsule cover off and take the panadol inside it. I discovered the tablet form of the same brand medication has a sometimes problematic preservative in it. Taking capsule covers off is safe with some meds but not all, apparently. So, I have to research that as well. I just find I have to do my research. In any situation I'd take the dye free option but I'd usually investigate whether the dye free option had problematic (for me) sweetners, flavours or preservatives before assuming it's fine. I've had to get medications from a compounding chemist before a number of times and it's always more expensive than buying the already manufactured med. It sounds like the U.S. is ahead of Australia in having dye free alternatives in the pharmacies (drug stores?). Or sometimes, (rarely), sick of having to be so careful of just about everything , I'll throw caution to the wind and just take the **** med. I do hate it when I'm prescribed something new to try. One part of me welcomes the fact that there is a new something that might make me feel better and another part of me fears the new med is going to be a disaster. blue (in Australia -- things may be different in other countries)

Hi June and others, I get all those things except my blood pressure goes up. It's often high, sometimes quite high but not getting dangerous/life threatening readings. Occasionally it's on the low side now, but not by much. blue

Just lost a post before I hit 'post.' But yes, I get burning skin sensations. My face, upperchest and neck, arms, legs, feet, mouth. Not all places at once thank god but it's usually bilateral. For me, Triggers are natural chemicals occurring in foods -- amines, salicylates and glutamates. Also have a problem with artificial flavourings, colourings and preservatives. (But want to mention that avoidance of the foods that contain these things Which really helped me control this burning response for some years in the beginning, has now seen me become more strongly reactive to them so I sort of regret ever limiting my diet as I was advised to at the beginning). Plus medicines can be a problem, often due to flavouring or colour or the medicine itself or one of the incipient ingredients in the medicine. Lately though this burning sensation is occurring more often, as is the sunburnt look that often, but not always, accompanies it. It's got to a point where I can't always pinpoint what triggers it. I do know that stress will do so and lately (past year or so) I've been extremely stressed -- health fears, father dying, problems with one of my kids -- and perhaps that's what is making my skin react so badly. These are my things that cause the reaction but could be some different reason for someone else. I've had no real great success with antihistamines (Hi and H2) and they make my constipation worse so decided for the time not to take them. But many people do have success, from what I've read. I've also have no success with singulair and sodium cromolglycate (both caused severe level migraine -- chronic migraine is another of my problems). Oral cortisone will take the burning, and skin redness away but only for about 4-5 hours at a time. Although it is highly effective when I have an 'true' allergic response. I've been told it's histamine release (I think due IGg response) -- my nerve endings in my skin read that response as sunburn feeling, the burning, and often sunburnt look in places. I do have 'true' allergies - IGe ? -- anaphylactic response to aspirin, and less severe allergic reactions to other meds (rashes, some slight facial swelling). I have had an anaphylactoid reaction to god-knows-what. I also have different types of urticaria, one of which is pressure urticarial which causes red blotches where the pressure has been applied and that red blotch is hotter than the rest of my skin until it eventually fades. An immunologist/allergist helps me get through this stuff -- I see her once or twice a year and we also correspond by email. She's a godsend doctor for me. Hope this isn't TMI blue.

i'm tired all the time - while often feeling a bit wired, if this makes any sense -- and I feel like I never sleep enough. I get about 6 hours a night now - always broken sleep, occasionally waking once, but usually 2 or 3 times a night. But sleeping longer does not make me feel refreshed. On the occasions it happens I wake with severe migraine, usually. blue

I was just wondering if the fact that she is at school and that in a regulated invironment when we are expected to sit, stand, play etc at certain times her possible inability to apply 'self-management' of some pots symptoms - things we often don't even know we do at the beginning -- might be a reason for her doing badly on school days. For example, sitting upright on a chair at a desk for more than an hour or two would do me in. When I was at university I'd be sitting with my feet folded up underneath me (semi-lotus style), or trying to find a seat against a wall where I could sort of lean to one side and rest my head on the wall, or even putting my head down on the desk -- anyway that I could manage to sort of get myself as supine as possible, except for my head which I need to keep elevated at least a bit. This was long before I was diagnosed with pots -- I felt like people thought I was strange but I just couldn't sit upright for too long. And being able to rest on the grass of the quadrangle between classes was a relief - Virtually lying down (only my head elevated on my hand by an arm propped up underneath me). None of these things made it that much easier to get through classes -- it was nearly always a struggle, some days better than others -- but they helped a bit. On weekends I just naturally fell into doing things when and how I could and then having a rest afterwards. eg. clean the bathroom and then lie down and watch tv before feeling up to putting on the laundry. I was more in control of managing my body because I wasn't expected to do the things that 'average' people are able/expected to do at anytime. I worked within my own variable timetable and speed. If someone had demanded I'd work to theirs I would have not been able to do it. This was long, long, long before diagnosis with pots. That diagnosis only came about a decade later when I'd got to the stage -- for some time -- that I couldn't work out how to manage just about every physical activity I needed to do but found myself unable to do. Not sure if I've made myself clear enough -- fog and anxiety are having a field day with me lately making it hard for me to write/talk coherently. blue

Interesting, I'm hypersensitive to sound, light, taste but my sense of smell switches on and off. Sometimes completely absent, sometimes I smell things what I consider to be a normal amount, sometimes smells are extremely strong and impact negatively on me. I have noticed though that when I can't smell but I'm in a situation that there should normally be a strong smell attached that I will get pots-dizzy anyway. So even when my sense of smell is not working I'm still reacting to the chemicals around me. My husband is a heavy smoker and although a lot of the time I can't smell it I sure can taste it in my mouth. As if I'm the one who has been smoking - my mouth tastes like I've licked an ashtray. He smokes in a room at the end of our apartment with the door closed and the windows open and hangs out the window to puff away. I wish for both our sakes that he'd stop but I can't get too heavy about it because he puts up with a lot of my pots stuff interfering with our life. blue

Hi Freaked, I was wondering where you lived because seeing this psychiatrist sounded like you had little choice in who you saw. Looking up your profile leads me to believe you have British NHS health service -- am I right? I'm in Australia and can choose our equivalent or see someone privately. I see a psych privately and he has no right to report to other docs unless I give him permission. He would always ask if he saw the need and he never asks. Although some of my other specialists send their letters detailing findings of my phsyical health to him - with my permission. About 6 years ago, a couple of years after I'd been diagnosed with POTS I was having a very bad time physically and emotionally. I rang my psychiatrist one day and asked him if he thought I had a somatoform disorder? I was wondering if this was all in my head and if so, could I work on my head and change the physical stuff.( I'd rationalized to myself that it would be better to have a somatoform disorder because then I could do the mental work and be well, voila!) He replied that he'd need to think about it for a few days. A few days later he rang me back and was emphatic that I did not have a somatoform disorder. Of course, I recognise that there are emotive aspects to how well I deal with many of my symptoms sometimes. But mostly it's the ****** pots stuff that can become so overwhelming at times - physically and psychologically. My psychiatrist pats me on the back most times I visit him, just as I'm leaving. He recognises my physical struggle and the emotional toll it takes on me. He understands and empathises with the brick walls I'm forever hitting. The circles I go round -- trying to fix one symptom (albeit temporarily) only to make another symptom worse. I'm lucky to have him. I just wish you had one like him and not the **** who's obviously got too much power and too great an opinion of himself to want to take a look at the fact that he could be wrong. I shake my head at anyone who is so determined that they are 100% right. There is no such thing as a sure thing in this life, as far as I'm concerned. I'd send letters complaining about him. Make a lot of noise. Try to keep all correspondence as rational and unemotional as possible. Get the medical board questioning him by being straight forward and calm as possible yourself. Present your case. Or as you mentioned, let your parents to do it. A friend of mine was married to a psychiatrist. He was a very bad man in a profession full of good people. After ruining a number of lives he was finally struck off and is no longer allowed to practice. When my friend was married to him he was still able to practice but when she left him she told me that he should not be. She was not a wife scorned, but rather a now-wise-to-him woman. None of us were surprised, some years later, when we heard he had been struck off. blue

Yep, I first noticed this when I was at university -- about 20 odd years ago. I'd try to be as horizontal in my chair as was possible -- sprawled out. Or I'd be resting my head on my desk while listening to the lecturer or tutor. This was long before I was diagnosed with POTS. I just could not stay seated for long without trying to get as horizontal as I could. Some people used to look at me weirdly in class -- all sprawled out as I was -- and I was very aware that I looked strange but I could not sit up straight for the hour or two that these classes lasted. blue

Katybug's weight fitness history could almost be mine. Except I am taller. If anything I think growing fatter has just made health problems more complex. Although I am talking about a lot of weight gain as does Katybug. blue

I can identify with all of the above. blue

I get muscle twitching now. It's relatively new. I first started in early January and I associated it with a med change especially when it went away a few days after discontinuing the new med. However it has come back. My night goes like this. I get very tired. Move from the couch to bed. Just start to relax and muscle twitching starts and lasts for a couple of hours. I can't get to sleep until it stops. They aren't the same as the hypnogogic jerks I get occasionally -- I've had those for years and they will jerk me back to full consciousness and then I'll fall back asleep really quickly. These muscle twitches are different. On a good night, what with it taking 2 hours to get to sleep and then waking often as now is my habit means that 5 hours of total sleep is a 'good' night for me. I'm exhausted. I nearly forgot to mention that it is also quite common for me to have a bout of tachycardia about 5 minutes after I lie down to sleep.I either lie there and wait for it to end or get up and walk about a little and it will stop. Weird for me that the walking around helps at this time because usually when I walk or stand I will experience tachycardia. blue

I have to go on oral prednisolone every now and then if I have a bad skin reaction to something. I don't feel better on the drug. I get terribly emotional and feel agitated and unstable -- a bit 'looney tunes.' Apparently this is not an uncommon response with this med. We are all different.