blueskies

I was swimming and feeling pretty good. quite a bit improved. then we moved away from the beach. we had lived within short walking distance. Now I try a walking exercise program. Over and over. I build up distance and feel a little better and then something happens and walking gets too hard (feel like gravity is pushing me into the ground, heartrate rises, overheating, hyper sweating and then, migraines -- the really, really bad sort). I was doing mat pilates at home for a while and had great flexibility and it helped me feel a bit stronger in my day to day life. but then my back caved in and I needed a laminectomy and I don't have the range of motion to go back to pilates. I hope to move closer to the beach again so I can swim. But it will probably take another year to manage that. I can't swim in pools because of the chemicals. blue

I'm actually scared of cats. Its because we had this beautiful looking part Persian when I was a young girl. He used to chase me through the house nipping at my heels (I could handle that) but he also used to lie in wait on top of a cupboard or a fridge and pounce on my shoulder (that really used to freak me out). He didn't do it all the time. Looking back I swear he picked his moments. Those times when I'd forgotten about him he'd suddenly leap out at me from some hiding place. Scarred me for life when it comes to cats. the rest of my family adored him and one day he went missing and was never seen again. I did not miss him but the rest of my family did. Dogs I'm very comfortable with. They like me. When our last dog had to be put down because she was very ill (about 12 years ago) I was also just starting to get very ill. She used to lie on my feet all the time. And lie next to me when I couldn't get off the couch or bed. Yep, I allowed her to get on my bed. She was the greatest comfort. And when we had to have her put down I really think the emotional toll it took on me made my pots even worse. I have considered many many times getting another dog. At the moment its not possible. We live on the second floor and although in the old days that wouldn't have stopped me having the right sort of dog for apartment living, I don't have enough days when I have the stamina to walk a dog regularly a few times a day. During the past 12 years there have been times when I've been well enough to get a dog and commit to looking after it but I'm so relieved I did not as I'm really struggling healthwise now. When we move back into a house I will however rethink this. They can be long and lonely days, somedays. And I find a dog to be a great friend. No judgements, lots of affection, always happy to see you, as it goes. Leave the house for 5 minutes and come back and be greeted like I've been gone for a year. LOL. blue

I am a mother-in-law. I have a daughter in law, and a son in law. And one child is still to get married which I hope he does because HE wants a family. If he didn't want a family I'd be fine with that. It's ultimately about the happiness of my children. I would never presume to speak like that about my daughter in law. or any of my inlaws for that matter. It's not in me. But I have also bought my children up to be loyal, first, to their partner in life. What my daughter in law does is her own business. Actually I like her. She's good for my son and he's good for her. If she had decided to have no children I would have been fine with that. But they do have 2 beautiful boys who I'm totally in love with and it's all good. On a lighter level: She's a really bad housekeeper and I love that, because I was too uptight about having a clean house when my kids were little. It's not about the 'mother-in-law' it's about the person that the mother in law is. She sounds like she's ignorant and doesn't know how to mind her own business. When I come up against critical people that have no right to stick their nose into my business or if I hear someone has said something negative about me, "like she's always sick' (meant in a critical nasty way) I remind myself of the old maxim 'that when you judge someone you are saying nothing about them but rather defining who you are.' Your mother in law has seemed to pretty much defined herself as being ignorant, rude, and a person who concerns themselves with things that are none of her business.' Try to let it go. I know it's hard to do when you are sick and tired and worried and feel vulnerable. But the only person she's making look bad is herself. She will only have power if you give it to her. I don't always remember to apply that maxim (sometimes I feel hurt and wallow in it a bit, LOL) but I try. I struggled a lot with my mother in law for quite a few years in the beginning. But I learned to let my mother in laws criticisms wash over me, leaving me untouched. I did not complain to my husband about her. But just got on with being the best wife, mother and person I could be. Strangely enough, my mother in law and I ended up to be quite fond of each other. She was never became a real, true, deep friend but we used to laugh about stuff and spend time together enjoying ourselves. The real test came when she was homeless at one stage and came to live with my hubby and myself and our kids and she was so easy to live with - we were respectful of one another and looking back I can see how living in her daughter in laws home must have been difficult. I was too young to realize at the time how difficult it must have been for her. Time makes a difference to some people. She mellowed. Funny how things can turn out. My daughter has ended up with a very nice mother in law but a really difficult father in law who is always finding little faults with her. Doesn't like me either. Not one bit. Does not try to understand me or my husband. He looks down on us for not having much money. I could give a rat's behind. LOL. And my daughter is learning that it's all his problem. She knows she can't change him so she tunes him out. Most of the time. It takes practice. blue

Hi Becia, I'm sorry to hear that you are having such a tough time. I've had two different migraine specialists over the years going back more than 12 years and I tried every preventative they had. So much medication, one trial after another (is it any wonder I have sensitivities to medications?). The only preventative that helped was cyproheptadine (called periactin in Australia). It was like magic. Within days my migraines disappeared. I could not believe that a H1 antihistamine could do this. This happy state lasted for 3 months and then I was back at the neurologist's telling him it had suddenly stopped working. He told me to have a 'holiday' from this med and retry it again at a later date. I did so and I it's helped for , I think, 3 or 4 different periods of time over the past 8 years or so. But it was not as effective as the first 3 months I used it. And now I get no relief from it. And last time I tried it for a couple of days it made my constipation worse. I was watching a you tube presentation of a Dr who treats pots in kids and teenagers and he mentioned periactin for migraine prevention. On the box it says it's indicated for migraine in teenagers if I remember correctly. But it worked for me for some time. It also caused me to be very hungry all the time, put on a lot of weight and could be constipating -- a big problem for me. Perhaps you could look into this with your neurologist if you already haven't? Dreaded migraines. I call them 'the beast.' blue

yes, I mix up my words badly. Have done for the past decade. I'm a lot older than you but pots is at least partially responsible for the wrong words coming out of my mouth. I also have trouble finding the exact word i'm looking for. Some days I'm much better than others. I attribute it to episodes 'brain fog.' Lack of good sleep makes me much worse. I'm glad to hear you have joined a church that has a young group of people. My thinking is that we all feel a lot better when we don't isolate ourselves if we can help it. Going the church and participating is a positive step. I'm glad you felt great about yourself after making the effort. blue.

I just installed the justgetflux. Thanks for that lejone. Katy, I used to use a glare shield years ago but I'd forgotten about it. 'Thanks for the reminder. blue

Hi Chaos, All three theories make sense. I hope my adult kids don't develop this. So theory one is encouraging. 2nd theory makes a lot of sense given the pots female to male ratio. I love the explanation. 3rd theory really makes sense too. Good thinking, 99. blue

Hi TammyKay, Just saying hi and welcoming you to the forum as I haven't done so yet. I'm sorry to read that things have been so tough for you and that your son is also having problems. blue

I have to use my computer quite a lot at times -- for my hubby's business. Plus I do a bit of writing -- just practice stuff -- it challenges my brain and, who knows, one day I might right something good enough to be published (a small hope). And I will check into this forum on and off on the days I feel okay to do so. But I do find I have to be very careful not to use my computer on 'bad days.' It overstimulates me, causes my vision to go shadowy or opposite -- causes my eyes to feel like everything is too brigh, and will trigger migraine or sometimes short lived dizziness. I lie on the couch to use it with my feet up, pillows propping up my back and head, and a pillow on my lap under the lap top. I try not to bend my neck down too much. When I have a mild migraine I usually won't even try to use my computer. When I have a bad one I can't bear to look at it. I used to have coloured reading glasses to help with the screen (must get some more) but on days when I'm not too good but have to use it I will put my reading glasses on with a pair of polaroid sunglasses over the top. Just wondering how other people cope with their computers on bad days, good days, whether they can trigger symptoms etc.? blue

Hi lynnie, Everyone has covered my experiences and more so I have nothing to offer except that there is a list of pots symptoms on this site somewhere that is pretty comprehensive. Visual disturbances are noted, I believe. I'm glad to hear you are going to see a doctor. Just wondering what is considered a long wait in ER in the US? In Australia I've waited over 6 hours for migraine help for example (I no longer bother with Emergency for that) but for a pretty wild allergic reaction I was seen straight away. blue

Hi, I just watched this Blair Grubb interview about hyperadrenergic pots and mca and was confused about one thing he said. I wasn't the only one: one commentor was confused about the same thing too: In her words: I'm confused . First of all says a group have hyperadrenergic pots and that they have typically high blood pressures and then states a subgroup of the hyperadrenergic group have mast cell disorders with typically low blood pressures . . . . . Hopefully the link will work. I'd appreciate opinions. blue

TCP, I hope you are feeling a bit better by now. I'm sorry that the infusions were not an answer for your pain, and caused you to feel so sick. blue

I don't know what the pillows look like but I was told to beware of putting frozen things against my body. I was warned off it by my specialist. I have erythromelalgia (2006 -- same time as pots). I was visiting my doc one day and mentioned how I sat with an ice pack under my feet whenever they got red, swollen and started to burn and he told me not to do this as it can cause permanent nerve damage. If it was me I'd definitely check with the doctor. A cool pillow filled with cool water sounds like it might be okay for me though. I must see if we have the equivalent in Australia. You guys mention 'walgreens' so much. It must be a wonderful store. Not sure we have anything like it here. blue

I have allergies to some meds and have 'adverse reactions' to some others. last time I tried an antibiotic -- Rulide,1 pill -- I was throwing up within 20minutes and continued to do so for 2 hours. Then I was freezing cold (v. unusual for me) and had to climb into bed for a couple of hours with every blanket in the house piled on top of me as I was shuddering from the cold. That lasted another two hours. Then, after 4 hours in total, my body returned to its usual 'too warm' state. I did wonder if I should have gone to a hospital at the time but an allergist specialist said no when I told him about that reaction some time later. He just said it was an 'adverse reaction,' not an allergy.?? I wish he'd taken some more time to explain it to me fully. It just left me feeling scared of taking antibiotics as I've had other sorts of 'adverse reactions' to the 4 I've tried in the last 12 years. When I asked him what to do when/if I needed to try another anti-biotic he said I'd just have to take it and see what happens????? I've gotta wonder why things have to be so hard. Luckily I was able to pinpoint that the antibiotic had caused the problem as I'd eaten nothing new or taken other new meds that day. blue

As I posted to barb about on another subject, I was diagnosed with erythromelalgia at the same time as I was diagnosed with POTS. It can get very painful -- and although it happens to my feet and very occasionally my hands, I also get it on my upper chest, neck, face and upper back. Sometimes my legs. Most of the time it is bearable as long as I can stay cool. Occasionally, something will trigger a more painful experience that can last for days. My legs and feet have felt like I've held them to a fire too long. Or my neck and face is read and sore and it can feel like my hair is almost cutting my skin when it brushes against my neck. Like bad sunburn. I did have a look at erythromelalgia sites (just recently joined a forum) but am reconsidering staying a member. I joined as my erythromelalgia is getting worse. I got friendly, kind responses from members of the forum but some of the stories I read on the forum frightened me. I'm scared of a progression to a higher level of erythro pain. I'm pretty sure I'm going to see my doc about this and talk to him before I go back to the forum. I need medical imput. I also recognise that one person's severe pain is another person's moderate pain. We all have different pain tolerances. So many docs have told me I have a high pain tolerance. As has my dentist. My dad had a high pain tolerance. But some of the stories of severe erythromelalgia sufferers have scared the heck out of me. blue

Ever since I had an adverse reaction to a med last December I've had a sort of sweet but sickly taste (sort of like some horribly nasty candy) in my mouth that comes and goes. Not sure what it is, but am relieved to hear others have taste issues too. I am wondering if it's psychological in my case. Anxiety/depression can cause some weird stuff. And since November/December my anxieties have been off the scale. I just hope it's not something to do with my digestive system which is way to slow and sometimes stops completely. I had the taste in my mouth for hours early this morning but at this moment no weird taste at all. I also have smell issues too. Most of the time I can't smell anything but some days I can, on occasion I can smell very sharply -- rare but it happens. Just a while ago I was with hubby in the car after he'd picked up a hamburger to bring home and eat, and I could swear I was smelling bleach. We got home, he ate it, and all I could smell then was that too much grease smell. The bleach smell was gone. Crazy stuff! blue

Barbara, I think your style of list sounds great. I usually scribble my questions down on the back of an envelope or something -- not very effective. I used to be very organized..sigh. I agree, much better to keep emotion out of it if at all possible. I save that up for my psychiatrist. The way to dress is a bit of a connundrum. Usually I don't make much of an effort though because I'm just not up to it. I usually go for comfort clothing. Just getting to the appointment is hard enough and please god, they don't make you wait too long. blue

Quite a few meds can make me hypersensitive to sun -- adding to my intolerance of the sun -- I have found. Thing is some meds make me burn very quickly. My pharmacist is my best source for this info when starting new meds. If it wasn't for being flushed most of the time I'd be pale as a newborn baby. blue

Thank you, Barbara. We do have things in common certainly. I just joined an erythromelalgia forum and people have been very welcoming but have yet to respond to most welcomes. I have to get my act together as people there have been very welcoming. But like you, I'm anxious about being a member. I've put if off. Because some people sound like they are living lives of extreme pain constantly. I, too, fear progression. The flares trigger anxiety and panic for me too. I know the anxiety/panic is part of the erythro just like it's part of pots. I can tell as I have the same old symptoms of erythro and know them well through repeated episodes but STILL I get panicky and anxious. Thank you for sharing your experiences with me. Oh, about the drink in the daytime. I just laughed. It doesn't sound awful. Just like you are wanting to enjoy life. I love a glass of red. My last glass of red I drank (the last alcohol form of alcholol I drank) was 18 years ago. And if I could occasionally have one in the daytime I certainly would. blue

I just found this on a search. I hope the link works. I got this computer last year and still can't work out how to link things properly. If it doesn't work and you are interested you could try typing the whole thing in, I guess. I found it a fairly comprehensive overview of POTS. Not sure how recent. But maybe, if one has no access to a pots doc this might help. Good for newbies, maybe. Or people like me that are not at all medically trained and have problems keeping the basics in mind. Those members that are qualified might find the info deficient or perhaps incorrect in some places. I wouldn't know. It did explain a few things to me that I did not understand. www.potsuk.org/.../MPIL2_Medical_professionals_guide_to_POTSJW.p... or you will find it on the potsuk.org site. ‎ blue

Great. I quoted myself as well as Raisin. Sorry people. blue

Hi Barb10 I was diagnosed with erythromelalgia at the same time as I was diagnosed with pots. 2006. I was hoping you could tell me about anything that has helped your erythro? I follow a diet low in salicylates, amines and glutamates, preservatives, flavourings, additives etc. It did seem to help with my erythro until about 3 years ago when symptoms starting getting worse. Lately, I've cut out sugar and other things I have thought might be making symptoms worse. I've seen no improvement but figure it will be healthier to stay off sugar anyway. I haven't really tried any meds for it because I'm supersensitive to meds -- at least one of the ones I'm currently taking could be causing trouble but it helps with chronic migraine and without it I have almost daily servere migraine pain. Mostly I shower frequently as I can in slightly warm water which helps to cool me down, and sit in front of a cool fan. Basically that's all I do to treat it and it limits what I can do, what I wear etc. Just wondering if you have any suggestions? blue

Vent away artluvr, I've done plenty of it in my time here. I hope you get some decent sleep soon. blue

Thanks for posting the link Darlene. We get this show on cable here in Australia but I don't watch it so I wouldn't have caught this mention of POTS.