blueskies

I hope you get some relief, Katy blue

I haven't had the flu vaccine in years. A couple of years ago -- just prior to the birth of my granddaughter I had to have the whooping cough vaccine -- doctors were ( they could still be, I don't know) recommending that anyone that was going to be in close contact with a new born should have the vaccine. I saw my allergist and she told me that because it was not a 'live' type I would probably be okay. So I had it, and I was. I didn't even feel a little sick afterwards. Or at least, not any sicker than I usually do. I was so fearful I thought I might dream up a reaction but I didn't. My elderly mother had an allergic reaction to a flu vaccine a few years ago. So now they give her the child's dosage each and she does alright on that. I don't understand how this is so. Perhaps they also give her another type? It has put me off getting the flu shot. I really need to try and find out what was in the flu shot she had the allergic reaction to. But she has so far been very vague about it - most unhelpful. She makes a big deal of not making a big deal about her health. It drives me wild. She spends an inordinate amount of time telling me how well she is, how well she eats, how much exercise she does, and says that her heart problems are not 'her fault.' Like pots and erythromelalgia and mast cell problems are my fault. As I said, it drives me wild. Whoops! A vent. blue

Hi Rachel I just thought I'd add that my niece was prescribed this med for migraine a few years ago. She was in her late teens. She used it when she had migraine, not as a preventative, I believe. It was successful for her. (I tried using it when I had migraine instead of as a preventative at one point, but it was like water off a ducks back for me - I needed to have it in my system in order to prevent migraine).. But you may want to talk to Tyler's doctor about trying it that way. blue

Hi katybug 8 Years ago I had a neurologist who tried me on every preventative available at the time. As of a couple of years ago I ran that list past a new neuro andhe told me nrothing new. But there could be by now. With the first neuro The only med that really helped me was periactin - cyproheptadine - an older generation antihistamine (somehow not surprising that it worked given my allergies and sensitivites). I started on 4 mgs at night for 3 nights, then I upped it to 8mgs for 3 nights if I remember correctly. Then 12 mgs in total taken at night. It was a kast ditch thing and i was blown away when it worked. I got great relief from it for about 3 months then it stopped working for me. The neuro told me to have a 'holiday' from it and try again. I did (can't remember how long the break/holiday was) up until 4 or so years ago I went on and off it more than a few times and got great relief each time. Last couple of times I tried it, it was not successful but I am thinking of giving it another go in future. I knew of another potsie that got great relief from it. Downside is it made me more constipated. And caused hunger - I gained weight- a lot. It is given to teens for migraine btw (I think it says that on the box). I think it is worth running past your doctor, at any rate. Worth having a look at Darn, my tablet is dying and wont recharge so I wont even try to correct the autocorrections.

Usually sit in the shower and the temp of the water is always on the cool (not cold) side. A cool shower followed by sitting in front if a fan is great for helping with my erythromelalgia flares. I can't even put my hands into the same bath water that my little grandsons bathe in - the heat sends my hands bright red instantly and I pull My hands - automatic reflex- the 'heat' is unbearable. Blue

I am 58 and I never could drink. It used to really annoy me that I would get the hangover before I could get drunk. After a maximum of two glasses Of wine would always be violently ill and look like I was very drunk. It didn't take me long to learn I could not drink alcohol successfully. Aargh! To those who can have a drink without paying for it physically - happy to hear it. Blue

Hi corrina, Yep, the combo is helping. My face is less swollen and red - I notice that a couple of hours before my next dosage is due that the swelling and redness return. I still have the signs of erythromelalgia - burning skin and feeling way too hot. I've done quite a bit of reading on the combo over the past few days and it seems that some people need to take larger dosages to gain good effects but this is something I will need to talk to my allergist about - I never raise dosages of anything until I talk to the relevant doctor first. I had never read that before. No article that I have read by a doctor suggests raising the 'usual' dosage. I am on what seems to be the most common. Zyrtec 10mgs twice a day. Ranitidine 150mgs twice a day. the downside to the combo is that, within 2 days my constipation problem has gotten worse. But, knock on wood, the almost constant abdominal pain seems to have eased off. Thank you, Blue

Hi, I was much like angelloz in the beginning and stayed thst way for years - could not catch a cold. Although I often felt like I was getting the flu only to have that feeling pass after a few hours. Now I get sick with just sbout everything that is going around. My little granddaughter started in childcare this year and nearly every time she catches something I get it too. I was not like that with my two older grandsons - it was like I was immune to any bug they bought home from kindy. blue....who distracts herself with reading, cable tv (especially comedy) and writing. It helps.

Hi again I just wanted to sad thst I have started bsck on h1 and h2 antihistamines because my symptoms have gotten much worse and the diet I am following does not seem to be having the same impact as it used to. I am slso going to retrial gastrocrom again - the first time period that took it I did not really think it helped me but now I look back and wonder. The second time I got increased activation of migraine but this may well have been a coincidence . Thank you Blue

I'm wondering what sort of diet helps people who have over active mast cells. I have followed the extremely strict RPAH eliminstion diet snd although it helps me a lot, I think it is probably too restrictive. I also feel I have developed a problem with disorded esting as a result - I now fear many foods. That doesnt mean I'm thin, I battle easy weight gain. It's more that I tend to go for the 'lazy way' of eating that still falls within the RPAH elimination diet - high in fat ( because I can eat dairy - low in veges and fruit) and. I used to eat the opposite way before I started on this diet. I have the flushing, abdominal pain etc. But I do not have diarrhea which seems to be most common - I have severe constipation problems instead. Constipation was not something I had to worry about much prior to starting the above mentioned diet. I was pretty regular back then. Any info about diets and links to easy to understand info on diet would be greatly apppreciated. I know i would have a better diet if I could manage better in the kitchen - all that standing up leads to brain fog and dizziness, and then I find myself accidently cutting myself or banging my head on the sharp corners of cupboard doors and also burning myself.

Thanks Dotty and Friedbain, it is reassuring to know that others have problems with prednisone. My POTS can make me feel like I'm dealing with excess adrenalin -I have mast cell over activion and some more severe allergies and I often feel like I have taken prednisone when I haven't. Actually taking the stuff has magnified this feeling/reaction - although it does help with the inflammation but not enough to take it unless I have a true allergic reaction e.g anaphylaxis or anaphylactoid reactions. Thank you Blue

Hi becia Anxiety is normal for anyone moving to a new home. Swinging between the possible negatives and positives is also normal. I hope your new home becomes your haven. Blue

Its a very good question and at age 58 I am still asking it a lot of the time. My good sense tells me I am doing as much as I can do, but some days I wonder. My not so good sense will see me having to remain lying down, except for my frequent trips to the toilet to pee, and i'll be thinking, "surely this can't be real?" That, despite my diagnoses. I think it's left over frim a childhood where illness was seen as weakness. And the years when I was told this 'was all in my head.' With the flushing etc.. I can look in bloody good health at times, at first glance, and people can reject that I have an illness 'because I look so well.' Sometimes I push too far, and it isn't me that stops, it's POTS etc that pulls me back as gjensen has noted. Chronic illnesses arent very well tolerated in our society. And as we are part of that society it is only normal that we have difficulty tolerating it in ourselves. Hence, our recurring disbelief, perhaps. At the moment I do know that no healthy person would feel as bad as I do after just one day on prednislone and a dental proceedure. I also know that no doctor is going to prescribe prednisone to a healthy person, that would be madness. blue

Hi I had to go to the dentist yesterday for a filling withlocal anaesthesia (no epinephrine). I have started to have a bad reaction to local injections so my allergist came up with a protocol for for the reaction. It doesnt seem to be a true allergy to locals ( yet), it just causes a bad burning red skin reaction that can last for 4 to 5 days over most of my body - called Erythromelalgia. I took 25mgs of prednisone at 9am as well as zyrtec and zantac an hour later ( the zyrtec and zantac only ever make my constipation worse- otherwise they can help to keep some of my other allergies under control). I had the dental proceedure at 11.30 am and although so far i have some redness snd overheated feeling my reaction wasnt too bad. I had done some research that indicated the topical anaesthesia that they give you could be the most likely problem). At arouund 8.30 pm I took another 25mgs prednisolone and within a couple of hours my heart was beating extremely fast and I was jittery and sleeples. At 1am I took 0.5mg xanax but it didnt help. By 6.30 am this morning I was a mess, rapid heart been and constant trembling and feeling so sick. And no sleep - I normally struggle to sleep anyway but this was harder. I took 1mg xanax and within half an hour the tachy subsided quite a lot. I took a zytec and zantac at 8am. I have decided not to take any more prednisolone. I have followed this protocol before for the dentist, plus I have had to use large dosages of prednisone over a 5 day period along with zyrtec and zantac for anaphylaxis and anaphylactoid reactions in the past. I never do well on this drug, tach, anxiety, jitters but last night was something I never want to endure again, unless I am definately having severe allergic reaction. I'm just wondering if anyone else with POTS has had a scarey reaction to prednislone?. I have always felt it was not a drug I ever willingly wanted to take but the 10 hours I spent with my heart beating as fast as it ever has, and doing so consistently for 10 hours, was was the straw that broke this zebra's back. I,m thinking the worst is passed and hopefully when the xanax wears off I wont see a jump in heart rate. It still is uncomfortable snd there is no way I could successfully get to skeep even though I'm exhausted, as I still feel a bit wired, jittery etc. I have had a lot of emotional stuff going on - my son is seriously deprssed and last night he was not doing well but although he has moved home to be with us until he feels better, he does like a failure. Which, of course, he is not. He has psychiatric help but he is really struggling snd I do have increased anxiety about that, which probably contributed to how I was feeling. (The idea that having 'real troubles' would cure me ( which is something one 'friend' said to me has surely been laid to rest). I have long dwealt with excess adrenalin surges too and understand it to be part of pots, and erythromelagia, and allergies and adverse reactions to chemicals in many drugs and foods. Sorry for all the mistakes but I am using a tablet, not a laptop, and I'm not very good at it. Every time I try to correct a mistake I make 2 more instead. . .

Hi Potluck, would it be possible for your psychiatrist to exchange info with your POTS doc? Mine has done so in the past and it has saved me a lot of explaining. In the beginning my pots specialist sent copies of his reports of my visits and tests to my psychiatrist to keep him up to date. My psych has better knowledge of POTS, because 8f this and his interest, than my GP. blue

I first experienced this when I was 16. I'm now 58. I often feel like I' m still dropping wh en the elevator has stopped. But it can happen to me when I am just standing anywhere. I react - jolt - and brace my legs instinctively/involuntarily. If on a train, after the train has come to a stop I will often feel like i am still moving forward for a few seconds. Many times when I have been on an aeroplane I will continue to still feel the sensation of being on a plane for hours afterward. Weirdly, i can often still hear the sound one hears while flying, also for sometime afterwards. I used to have to go to sleep to stop it. I no longer get on planes as despite all the precautions i csn take i now crash for badly (bedridden) for dsys and days afterwards. It is not worth it. I do experience vertigo at times, and I am a chronic migraineur. Blue

Actually, raisins suggestion Of laying down for therapy is, I think, a pretty good one. My psychiatrist has a chair for a patient to sit in, or a sofa. I used to get through most of my sessions while sitting in the chair but occasionally I'd spent the time on the sofa with my feet up. At this time, every session I go to is spent on the sofa because I'm very 'potsy' at the moment. Also, most days we turn off artificial lighting and open the blinds to let in natural sunlight. Some days when I'm highly sensitive to light I will wear my sunglasses. He's got used to my ways. I pay his secretary the fee before I go into the appointment so that afterwards, when I am more likely to feel physically and emotionally drained I can leave straight away. I find my psychiatrist is very flexible and accepting about me moving around or lying still or whatever and I appreciate it. I have been a bit of an education for him. Blue

Thanks Rachel, excellent article! Taking it to hospital when I am admitted late this month. If they can't come up with anything to help my ERYTHROMELAGIA I will offer this up to them to give them some ideas! Blue

Sorry, i am posting from a tablet and it auto corrects at will plus it is did cult to write posts with it - so please forgive any spelling mistakes or nonsensical words. If I did not have the problem with migraine I think both zoloft and valdoxan could have been good for me. Just being able to get good sleepgoes a long way to Iimproving my mood and valdoxan did improve my sleep. I have another ssri to try -citalprolam. About 6 weeks ago I had another episode of deeper depression and the psychiatrist and I thought that citalopram could be good if I could tolerate it. But I have been too wary of increased migraine to get up the nerve to take it. Luckily the darker depression had lifted now, for the time being. I have gone on, but wanted to detail my experiences as fully as possible. Blue

Hi potluck, i am sorry to hear you are dealing with strong depression. Years ago I had severe postnatal depression so I have a pretty good understanding of how hard it can be to deal with. I do suffer from dysthymia ( chronic low grade depression) and experience periodic dips into deeper depression - often tied to how well or badly I am coping with pots symptoms. I have not had great success with ssri and no success with snri s. I did take zoloft at one point (my pots was undiagnosed at the time) and did quite well on it. At about the six week mark my mood started to lift and it was not until I had to stop it ( it was thought to be a possible cause of an anaphylactoid episode) that I realized, after it had left my system, how well I had been doing on it. I did try it again two years ago but it triggered migraines. Chronic migraine is one of my problems and the zoloft triggered migraines that would break through despite my pain medication. This happens to me with both ssri andh snri anti depressants. One antideprssant that would have been good, possibly, if it had not aldo triggered migraine for me was Valdoxen. I stayed on it for about a month as it was giving me great, wonderful, glorious sleep but I was forced to stop it because it too triggered migraine. It was so wonderful for sleep that I persevered for the month hoping my body would adjust and the migraines would fade away enough back to usual levels and frequency, but after a month I had just experienced too much head pain. If one of the latest theories about migraine is true - that a cause of migraine can be low serotonin levels - it makes no sense to me that I now respond to those antidepressants with migraine. If migraine was not a problem I think I would be be still taking the valdoxen. I did take an old tricyclic antidepressant for 10 months not long after I was diagnosed with POTS. Called Endep. It was prescribed for migraine pain and I thought it was going to cause migraine but tried it to keep my neurologist happy. It did not cause migraine but didn't really help them either but it did left my mood enormously. I was very happy, a little too happy. I became what I think of as just a little too happy - I ended up only sleeping two hours a night but not feeling tired. I was swimming 2 km everyday. I felt great, and apart from constipation and migraine (not increased by this med but not alleviated either)I saw good improvement in my other pots symptoms. It improved so many of my symptoms. Except for my constipation problems, as they intensified even more when I was on it. I had to stop the Endep because of the 'little too happy slightly manic' behaviour.My psychiatrist told me this can happen to some people. ( I am not bipolar btw,these sorts of antidepressants can bring on extreme mania in people who have bipolar disorder, from what I understand.)

Hi Jerry, I also get chilled with sweat when this happens and this can happen in the heat of summer or the cold of winter. My fasting blood tests were high normal but because of my age (getting old) it was recommended I have glucose intolerance testing. Sometimes I wonder if it is the telmistartin I take for high bp? When I've gone off the telmistartin (micardis) I actually feel a bit better sweating, chills wise etc., but my BP climbs too high . losing weight did not help that either. It's good to get rid of so much of my excess weight but losing it did nothing for improved bp or glucose intolerance. Blue

Hi Sarah, i can't be much help to you as my tests have mostly been different from the ones they are putting you through. And 7 can't remember anymore what all the blood tests have shown over the years - nothing obvious or I would remember, I think. But the tests I have had have mostly been very bearable. I've had more than a few embarrassing ones -anal probes, anyone? LOL. I'm going into hospital for 5- 7 days at the end of this month for More testing and if it is anything like last time it will be a 'walk in the park' . It's surgery which has done me in, in the past. I hope the topomax helps with migraine as well as the seizures. This is the first time I've heard about migralepsy - obviously it's the first time the auto correct on my tablet has heard of it too. It wants to write ' migrate psychiatrist' Please post of any developments and I hope things go smoothly for you. Blue

And I'm the opposite. Pseudoephidrine is bad news for me. It increases my symptoms of instability, heart rate and shakiness. Another example I found how this stuff differs from person to person. I have noted that some people on the forum feel better when taking predisolone. I hate it when I have ti take it for allergies because it increases other POTS symptoms.I Blue

My sister has seen me very POTSy when we are out - having trouble walking, sweating profusely, unfocused, a bit panicky and she said I look like I'm hypoglycemic during these times. She nursed her mother in law who was ill with cancer and had hypoglycemic attacks and she said I act and look just like her when I'm in that state. I am not diabetic but my glucose tolerance tests indicate I could be headed that way despite losing a lot of excess weight. I suspect exercise would help this, for me. But I am unable to exercise at this time.

Hi Becia, I'm sorry to hear you are experiencing this. I was misdiagnosed with panic disorder for nearly 2 decades. During this time a neurologist told me I had 'a garden variety of balance disorder' that would cause me to feel bad at times but not to let it stop me doing anything. During these decades I brought up three kids, held down jobs, and got a university degree but I felt ill most of the time. I was not getting over my anxiety despite applying the cognitive behavioral therapy I had been taught each and every day, except during those 'strange periods' when I would end up in bed for a day, or week, or month unable to walk unless to get to the toilet using furniture to lean on and trying to hold myself steady against walls making my way to the bathroom and back. While I can understand the misdiagnosis - no one had heard of POTS in australia 30 years ago it had the profound effect of causing me to doubt my sanity and I ended up having little belief in myself as a result. I wasn't looking for a diagnosis - I thought I was crazy and this also explained away the migraines etc. But allergic responses continued to increase and then my bowels stopped working entirely. It was my allergist who suggested I see the doctor who diagnosed me with POTS. I nearly didn't bother to go see the doctor who diagnosed POTS and ERYTHROMELAGIA. When he gave me the diagnoses and said I had postural Orthostatic Tachycardia Syndrome I started to cry. I told him that I had thought I was a hypochondriac - that everyone now thought I was. Except, weirdly, the psychiatrist I had been seeing for quite some time who had told me a number of times that he thought something else was going on besides anxiety. POTS explained so much, was/is a legitimate diagnosis, yet I had come to question myself so much that while I knew I had it, I still didn't quite believe it. So profound was my lack of belief in myself after years of treating an anxiety disorder that was not ever going to be treated because it was not what I had. Although you can be sure these years have left me anxious ( but 'panic attacks' are part of POTS) with a real struggle to believe this is really happening to me. At one point I rang my psychiatrist (my old one had moved away) and asked him if he thought I might just have a somatoform disorder - this despite having so many years of the symptoms of POTS that specialists were treating me for. My psychiatrist responded that he wanted to think about it for a few days. 3 days later he called me back and said that no, I did not have a so mato form disorder but to believe my other medical specialists. To this day I still sometimes wonder if this is all real despite having well respected specialists treating me. I have been so sick, am sick as I've ever been at this time, yet 2 decades of being told it was all in my head and I could make it better even though I did everything I was supposed to do to get better, i was the 'poster child for applying cognitive behavioral therapy' - cbt -all those years - with no results. Because I was doing things everyday that I should not have been doing, such as making myself stand in line even though I felt like i was going to fall, would feel very ill and bring on an extreme migraine or other pots symptoms. I gave nearly 20 years to cbt and ended up still anxious as well as terribly depressed that I could not get better despite religiously doing everything the cognitive behaviuoral therapy asked of me. To this day, i still will often find myself in situations where my body is demanding I lie down and my brain will be saying' you are fine, you don't need to lie down, what is the worst that can happen to you?' That is how effectively I was 'trained' despite also knowing my body will not allow me to push through anything - it will stop me immediately or I will manage to get home and crash there. Don't let this happen to you. I have the quote from Shakespeare at the bottom of my post to remind me I have pots but also, should I come across a disbelieving doctor I can just think to myself about them " honestly? You know more than Shakespeare? I don't think ssoooooooo" it's still not water off a duck's back, but if a doc isn't interested I no longer try to enlighten them. Because they aren't good doctors anyways, and really, for the sake of sick people, should be doing something else, not doctoring. It is impossible for anyone to know everything, and indeed, the more expert someone becomes in their field, the more they realize that there is so much more to know than they will ever be able to learn. I don't think you can be a good health professional without realizing that very simple fact. It is impossible to know everything about anything and there is something wrong with people who don't think like that. Xanax is a help for some peple with pots, i have read. I take it now, but am switching over to valium. It helps calm my autonomic system a little bit. However, I don't know that I would be taking a psychiatric med on the advice of a doctor who thinks what I have is psychiatric. I would be speaking to my pots doc about it if possible. Blue