blueskies

Some years ago I was found to have severe enough levels of anaemia that I qualified to have the camera test free -- the one where you swallow a camera in a pill and it travels from mouth to toilet and they get to see what's going on. Not long before I was scheduled to have the test I asked the gastroenterologist could he test me again for anaemia. All I can say is that I intuited that something had changed. And my levels came back in the low but normal range. These tests were about a month apart. I changed nothing in that time in my diet nor did I take iron supplements etc. Unfortunately I was no longer eligible for the free camera test because of the improved levels,and had to decline having it done as I would have had to pay about 2 thousand dollars out of pocket for it back then. The reason I asked for the second test was that I had suspected that sometimes my readings seemed to change for no reason at all. It certainly confirmed they can change within a month, quite dramatically, for me. It was never explained to me how this could happen. The gastroenterologist just shrugged. He didn't even want to speculate. I mentioned it to some of my other docs at the time and neither did they want to offer an suggestions as to why. Very frustrating. blue

Interesting observation, blue-jay. blue

Hi Chaos, I just pulled out a copy of the letter to my gp from The Sleep Disorder's Unit at the hospital in Australia where I was tested, to check your question. In part, it says that, "The diagnostic sleep study demonstrated positional obstructive sleep apnoea." No mention of upper airway resistance syndrome. When I'm in supine position the hypopnoeas occurred much much more frequently than when lying on my side (lateral) position. Basically, my problem becomes more serious if I sleep on my back. The doc was the one who suggested all the different things I could try but in those days my finances weren't so tight so I went straight for the most expensive solution -- the cpap. The link you sent me indicates that UARS causes insomnia and frequent wakening during the night. I have that but it's only relatively recent and I think it's anxiety, adrenalin and the 'flight and fight' response etc. It makes sense to me that UARS can develop into sleep apnoea. I can't remember where it was that I was reading about people with sleep apnoea who believe that they lie on their sides all night and think they are okay. It was found that many of them, when studied, will start off sleeping on their side, roll over onto their back at some point during the night and then roll to their side before waking -- and they wake convinced that they've spent the night on their side. So I think the tennis ball/sock/pyjama top routine might be wise. I live in a big city and the biggest advantage is that I can access all the tests I need or think I need. No one ever suggested I had sleep apnoea. Or asked about snoring (which I don't do) or any other noises I might make when sleeping (apparently I used to make a sort of clicking noise in the back of my throat -- my husband complained about it for years ). And when I first saw the specialist who ordered the test he seemed to indicate that in his opinion I did not have sleep apnoea. My results proved otherwise. BTW, it takes 4 tennis balls in the sock sew to the back of my pyjama top to stop me rolling onto my back. The one tennis ball suggested by the sleep specialist does not cause me enough discomfort to wake me up when I roll on my back -- perhaps I'm 'sinking' into my soft bed so I just can't feel it. I found myself waking gasping for breath a lot, not so long ago but worked out it was a medication I was on -- something that depresses the CNS. I don't take it anymore. I didn't realize it was the med at first because I also occasionally get sleep paralysis which sometimes involves waking up and having to gasp for breath. I hope you are able to access a sleep lab soon. blue

I would agree with gjensen. I run any, new suspected allergy by my allergist before she gives me the nod to go ahead and try it or tells me to stay away from it. (Sometimes, it can be more complex. ie. I'm due to go into the hospital soon for just a day to be tested for an allergic response to a laxative -- it means spending the day in hospital, having a canula put in my hand so that they are ready to deal with an allergic reaction if I have one, and being fed capsules of the stuff (never knowing which capsule contains the laxative) over a period of hours under the supervision of a nurse. A Boring and anxiety producing day, but effective. blue.

Hi Kris, As a fellow flusher I was excited to read your post that you'd found the cause only to see you were disappointed. Sorry to hear that. blue

Hi Spinner, Basically I have positional sleep apnea. My sleep specialist (who works at a major hospital so is very legit) offered up solutions to the problems when I was diagnosed. That I could try a wedge pillow, or tennis balls in a sock sewn to the back of my pjs or the cpap machine. I decided to try/buy the cpap and while I could handle it very well for quite a while other problems mentioned above made it impossible for me to use it eventually. A costly exercise for me. Now I'm doing the tennis balls in a sock attached to my pjs which is effective. The Nights I wear it I know I'm having very few apneas by the way I feel in the morning ( a tad more refreshed - not huge improvement to how I feel but noticeable and about the same as I got with cpap) but there are nights like last night when, at some point, I've taken the top off unconsciously. Woke to find it at the bottom of my bed. I used to do this with my cpap mask sometimes too. No, I don't snore. I make a funny noise in the back of my throat, apparently. My airways are blocking -- hence the apneas -- but generally only when I sleep on my back. I'm wondering if any others who have sleep apnea (positional) use alternatives to the cpap machine. blue

I woke up every hour last night. And I felt hot and/or sweaty -- and it was a cool night. When I finally got up about 4.30 pm I went to the bathroom and face and chest were flushed bright red. I hadn't eaten anything or take anything that will cause the flushing that day. I'm about 6.30 am here and I'm still hot. Hubby left for work this morning with a jacket on and I'm lying in front of an open window in tshirt and shorts and feeling overheated/overdressed. When I start the day like this I know the day is going to be a write-off. I'm anxious a lot lately. Maybe that's enough to cause the frequent waking, heat and flushin??? blue

This has been my experience at times too. Usually I can get through some sort of family crisis, some crises of some kind, and then I crash. I think it's adrenalin keeping me up and functioning. I can feel this undercurrent of 'energy' that doesn't feel the like normal, relaxed kind of energy that I remember. That this can happen has served me well at times to get through some demanding situations but eventually, within days, I crash and usually the crash means a monster migraine. Sometimes, however, nothing is going to help me rise up and meet the challenge of helping someone in a crisis. At those times, the best I can offer them is listening -- on the phone, if they can't get to me. blue

Hi All, I tried to do this as a poll but was not successful at creating one. Typical. LOL. So my questions are for those who have sleep apnea. Mainly, do you have positional sleep apnea? And how do you treat it? CPAP, wedge pillow, tennis balls or other? I have positional sleep apnea (apneas while on my side average about one episode an hour but climb to 'moderate to severe levels' if lying on my back. I did use a cpap successfully for some time but then found I started to develop pressure urticaria from the mask and straps -- no matter how loose I could make them without affecting the seal of my full face mask and pressure urticaria on my face was painful. And then the straps and mask (mainly straps) started to give me more migraines. I've had to give up on the cpap for some time now but I use 3 or 4 tennis balls sewn into a sock on the back of my pyjama top that keeps me on my side and gives me a better night's sleep than without. My sleep time is too short but this is independent of sleep apnea, I'm pretty sure. I'm just wondering about the experiences of others? blue

I don't faint but I have experienced anaphylaxis. I was joined up to MEDIC ALERT in Australia for a while and they provide you with a medical bracelet with their phone number on it and they keep a record of meds and illnesses you have which you can update. But I let the whole thing slip -- must get back to it. An epi-pen in my bag is not letting anyone know anything. I doubt even my family would think to look for it. In the small zip up bag that I carry my daily meds in, I keep a note detailing my meds, dosages, how many per day, and the names of my main doctors. But that's all inside my shoulder bag. This subject is a good reminder for me to get more organized -- again! blue

Becia, I just like that you went to the track meet. It's living. I have seen my old life become unrecognisable for 12 years now and I deal with depression, anxiety and anger on any day because of this -- I'm having real adjustment problems but am trying to accept. I do know, that on days that I feel up to it, if I make the effort to get out I will feel lighter of heart because of it. I feel like I've participated in life. Lately I think that maybe I haven't been trying to do stuff that I enjoy outside the home as much as I could, perhaps. Although, I do have a young grand-daughter to mind on occasion and although I love her like crazy the responsibility and energy involved is sapping any energy I'd have left to do something just for me that I'd enjoy. blue

Hi Sue, Heat intolerance has been a big problem for me. Especially when my ability to sweat was impaired for about 6 years. It got worse with menopause (you are in those years, I think) and I still feel the heat intensely -- I hate it -- but one of those things that I can be grateful for is that my ability to sweat came back. Slowly, increasing over a year. Now I sweat way too much and my clothes are always nearly ringing wet in summer but I know, from sort of being both ends of the sweating spectrum, that the ability to sweat, even too much, feels a lot better than not seeming to sweat at all. I have problems with the external temperature but also problems with hot sunburned skin feeling (and I often look like I've been sunburned) as well as hours each day when I feel like I'm radiating heat from the inside. But at least my ability to sweat is back, albeit it's swung to the too high side. I have a shower when I can, sit in a very tepid bath and in between doing that I wash myself down with cool water and a wash-cloth -- and then sit in front of a fan. We are in autumn now in Australia and although warmer this year than usual, the nights are finally turning cool and it's helping me a bit. I dread next summer already...sigh. I still get too hot in winter. I'm the person you see walking down the street in a t-shirt when others are dressed in woollens but at least the winter feels kinder in regards to this over-heating business. The first paper I read on pots about 8.5 years ago post diagnosis (before joining a forum) was written by Dr Grubb and he mentioned how people with pots really need to have air-conditioning. It's a must if we can afford it. blue

I was not at all deconditioned when I really started to feel symptoms of pots so strongly they couldn't be ignored - I was, and had been all my life, an exercise enthusiast. Since then I've gone through periods of being 'conditioned' and periods of being deconditioned, all depending on how pots symptoms are. It's the symptoms that seem to impact on my ability to stay fit. Not the fitness that improves my worst symptoms although it does make me a bit stronger. I find that it is often my attempts to stay fit that bring on my worst symptoms. And this can come on weeks or months into a regular exercise regime. Then I have to stop exercising to the point of becoming deconditioned. Then I'm able to start exercising again etc. It's a frigging circle going nowhere. By the time I got my pots diagnosis I was deconditioned and my pots doc did think I'd be well within the year if I exercised regularly and try other things. I was a little sceptical given how fit I was when it all hit hard. If deconditioning bought on pots then I should have had anti-pots given my original level of fitness. But I started exercising again and did get very fit (mostly swimming 2kms a day) but worst symptoms did not improve. Since then he's seen me go up and down, 'fit' or not, and has re-evaluated the complexities of pots. At my age, 58, I'm pretty sure he's dropped the opinion that I can make myself better from this. blue

I used to find sushi gave me a real power surge. I found the positive energy response when I ate it surprising to the point that I wondered if it wasn't 'all in my head' lol, Unfortunately, I developed food intolerances to foods containing salicylates, amines, and glutamates and now can no longer eat it. blue

Years ago, during a period when I was experiencing some symptoms of pots but just believing doctors' regular assertions that it was 'all in my head,' I went through a prolonged period of waking in the night with tachycardia. I'd come straight out of sleep, heart beating rapidly, and my response was to get out of bed and go to the kitchen and drink a glassful or more of water straight down. Sometimes I woke up when I was already out of bed heading for the kitchen. I still wonder, looking back, if then I was unconsciously treating low bp/high pr with water which raises bp. At any rate my heart would very quickly return to normal and I'd go straight back to bed and back to sleep. Strange days indeed. BTW, there was no fear involved so these were not, in any way or form, middle of the night panic attacks. I never associated it with rem sleep but I could have been waking from it. I was very fit at the time too, and my resting heart rate was athlete levels. As was something else the docs tested. One asked me is I was an athelete' I was very fit but not competitive athlete levels. blue

Some years back I was regularly taking my temp only to find it was low range. Consistently. Yet I felt overheated. I did wonder if the overheated feeling was my body's attempt to get my core temp up to normal but couldn't get an answer out of any doc. I've been meaning to buy a new thermometer so I can start doing it again because the feeling of being internally overheated is happening more often than it's not now. However, I often feel very much like I did on the first day of the vomiting virus I just experienced. Really hot -- radiating heat. The heat (and while not able to take my temp I know I had a definite high temp. Don't know how high but hubby said I was radiating) caused by the virus was more intense but internal heat, dry skin all felt the same way. I don't know.....maybe fluctuating temps on a normal daily basis, maybe mostly low, maybe internal inflammation making me feel hot (is that possible?)....docs have no answers to this one, for me. blue

Hi Becia, When I opened the forum posts and pressed on your post and read I thought you couldn't have written it at a better time. I've just had a vomiting virus I caught from my young granddaughter (thought I was gonna die about a hundred times the first day), which triggered a hateful migraine (migraines are a pots thing for me) that's still lingering, then half way through yesterday realized I had broken out in cold sores and also had sore gums?? I was lying in bed and told my husband that, okay, I accept this now, I know I'm sicker than usual at the moment but the point was that the day I came down with the virus I woke up thinking it was just another bad pots day and it turns out, yet again, that I couldn't tell the difference between pots and the beginnings of a virus (heck, they were both happening). I told him that I now accept that I have pots, that it's not going to stop me from managing it to the best of my ability, but that I accept it and that the people around me (he and my adult chidren) are going to have to accept it too and not question me when I decide I can't do something etc. Hubby asked did that mean I was going to give up and crawl back and forward to the bathroom like I'd been doing all the first day with the vomiting? I said, hopefully not, but there are days (hours) with pots that I have had to crawl in the past even though they have gone now. But they may come back. And I just have to accept that for now and not continuing feel the disappointment when horrible symptoms return. I think in acceptance lies peace. And I really need peace. Not this hyper, anxious, feel-like-I've-been-boxed-into-a corner-of-a-boxing-ring and continuing to desperately tell myself that I have to be better than this, and consequently feeingl like I've failed. So, for me, accept it, manage it the best I can (congrats on doing your basement gym thing, btw plus your answer to the wheelchair question is excellent), try to nourish my body and soul and most important for me so I'll say it again so I hear myself, accept it. I won't stop looking for ways to feel better but I'm done feeling bad mentally about not feeling good physically. blue

A month or so ago I had the worst migraine of my life. In the past few years I have thought that I might be getting cluster migraines but they seem to get mixed up with 'normal' migraine. Not straight forward. Sort of switching from migraine to cluster and then back to migraine over a 3 day long episode. It can switch over to 'cluster' twice during these episodes.. At some point during the pain of migraine, my head pain will ratchet up to levels I've not experienced before. For many years I was a more 'normal' migraine sufferer -- go to bed, head pounding, eventually sleep, and get over it. Then, about 8 years ago, I found my head hurt more when I lay down and I'd try to stay as upright as I could for as long as I could. Now, when the pain gets intense I'm pacing the floor -- extremely restless --- until the OI makes me lie down and then the pain becomes the worst pain I've ever felt in my life. During this time blurring of my eyesight has gotten worse and my bp has spiked higher than it ever has before. And I didn't take my bp when in the middle of the most intense pain, I took it when the pain had settled back into 'usual type' of migraine. My father suffered cluster headaches during his lifetime. But he was male, a very heavy drinker and smoker -- all implicated in cluster headaches. None of which applies to me. His pain would get to the point he'd be down on the floor banging his head against the floor. But my mother remembers him often waking and sitting up on the edge of the bed and then pacing around complaining of head pain. For him, his cluster headaches eventually stopped but not until he'd been the rounds with doctors and they'd discussed cutting a nerve in his face. I couldn't stand the thought of more pain by banging my head into the floor but I often do wake up with this pain in the middle of the night and sit on the edge of the bed and then pace. I'm afraid of getting head pain that I had about a month ago, ever again. This new-ish pain does not 'throb' like the migraines I used to get. It's constant and piercing. And before I used to be able to relax my muscles to get through the pain - I had learned to handle pain and lessen it by relaxing muscles and breathing slowly and regularly but now it's like every muscle in my body is tensed and even though I try to relax them it's impossible with muscles tensed, hands clenched, like I'm bracing against the pain and my breathing comes in short sharp breaths. I seem to have no control over how I get my body to respond to the pain. I am completely vulnerable when in this state, can't help myself at all. blue

I'm getting older and my eyesight is deteriorating. But I get increased blurry vision a lot now -- it's only in the past year or so I've noticed how much my eyesight becomes more blurry than is usual for me when not wearing my glasses. Usually it's 'aura' and a migraine follows. The blurry vision will continue during a migraine, sometimes.

Hi Ashelypoo, I would eliminate coffee slowly -- a bit less each day in order to prevent the headache some people experience when they go without their caffeine hit. Like Katy, I drink coffee to help a migraine -- when I'm not nauseous, that is. blue

just to add, I have read that some people might feel exhausted after a migraine, others might feel a sort of euphoria (possibly because the pain has ended??). In my case, I feel exhausted. I believe it's called the 'post-dromal' phase, if memory serves me correctly (which it often doesn't anymore...sigh). However, I've always been taught that when I experience ANY new form of migraine it should be discussed with my doctor to rule out any other problems. I also get chest pains - different types. My latest, which has been happening for months feels like a wide elastic band around the front of my chest, just below my breasts. It comes and goes and can last for hours. Often standing up will relieve it for a while but it comes back when I sit down (actually, I semi-recline, rather than sit -- less potsy that way). blue

Artlover, I can 't drink fruit juice due to intolerance to the salicylates in fruit. Because juice is concentrated fruit, it means I'd get a higher load of salicylates and a stronger adverse response. What else could I try to drink. Would sugar and water do the same job, do you think? I want to try something because I'm having episodes of what could be panic, what could be low blood sugar, or just pots-stuff that I have to wait out. I'm not sure which. If drinking something sweet has a chance of fixing these episodes I'd like to try it. blue

I'm glad to hear that you and your son have had such a positive visit to the cardiologist. It looks really promising. blue

Hi people, Thanks for sharing your medication treatment for mast cell problems, with me. Meds for H1 and H2 seem to be used by all. Interesting to note that larger doses of H1 and H2 are needed than is recommended on the box. I read somewhere else, I think it may have been another forum, that one person was taking 4 times the manufacturer's recommendation of zyrtec. I intend to speak to my doc about this -- possible safety issues vs possible health benefits. I'm already taking double manufacturer's recommendation for zyrtec. I stopped taking the zyrtec and zantac for quite some time as the zantac really made my very slow bowel motility/constipation problem much worse, but am getting sicker (pots, mast cell problems, -- the migraines that come with both) so am reintroducing these meds and once I feel good to go I'm going to give sodium cromoglycate another try. I seem to have all the symptoms of mast cell degranulation except for diarrhea. I also seem to have all the symptoms of carcinoid syndrome including a growth in the submucosal layers of my stomach lining except for the diarrhea. (as I mentioned, I have very slow motility). But in regards to carcinoid my gi is of the opinion, after ultrasound endoscopies and biopsy last time, that it's just a fatty lesion -- although it does have some similarities to a carcinoid growth so it's not quite as straight forward as he or I would like. I'm overdue for another ultrasound endoscopy -- supposed to have them every two years to check for growth and they want to do a biopsy each time now, but have put this one off because the medications for the procedure causes me to have really bad histamine release and all that comes with it, about 12 hours after the procedure. No fun, in other words and I grow more cowardly every day. plus, as I vented in another post, financially all this stuff is starting to hurt. thanks for your imput. blue

Hi Macca, You are right. I do live in the eastern suburbs -- lucky me! We spent 15 months living in the inner west (just moved back to the east 5 months ago) and while I loved the society, diversity of culture, and the creativity and imagination that goes into making those inner west suburbs an exciting place to live, I did not miss the hotter temperature - I'm heat intolerant. I love the cool harbour/ocean breezes so much and am glad we have moved back to the east. I hope that I never have to move away from the coast again. Thanks for your imput and encouragement too, looneymum. I actually have been doing a little bit of research on the net lately about dopamine. I know one hormone can not be taken on it's own. That bodies are finely tuned and supposed to be balanced - just not ours. But the more reading I do the more I think I may have a dopamine problem. Not enough dopamine. I haven't read enough yet to come close to understanding this but I've more reading to do and also I will take a visit to the psychiatrist to discuss this with him. Warm Regards to all, blue