May 9, 201412 yr Maybe I can post a few links that better explains pots, and if my daughter has time she can relate her experiences to you ladies....I can't post anything until I get on my computer and off my phone... fat fingers are not conducive to small keyboards...lol
May 9, 201412 yr Author Maybe I can post a few links that better explains pots, and if my daughter has time she can relate her experiences to you ladies....I can't post anything until I get on my computer and off my phone... fat fingers are not conducive to small keyboards...lol Yes please Joe I would be very grateful. Sue...so you get the bath faints too! Seems not many doctors know about the condition. Thank goodness for our Joe and him pming me.
May 9, 201412 yr Yep always feel faint after a bath! Fair play Joe that would be great thanks a mill x
May 9, 201412 yr Author Yep always feel faint after a bath! Fair play Joe that would be great thanks a mill x The ironic thing for me is I have always been a fainter (can remember fainting having a plaster ripped off atv6 years old) but never questioned it! I said to the doctor today that as a kid your just told your a fainter and you crack on, head down and get on with it. I will be over joyed if the water/salt increase, or if needs be medication sorts this out for our Lucy and myself, over joyed! Have you always been a fainter/dizzy spells type then Sue?
May 9, 201412 yr Yep sure have, the first time I fainted was my first dentist visit when I was probably 7 or 8 and nearly every visit since, every month I get very weak or faint from my periods aswell, funnily enough the week before them my fibromyalgia is always soo bad and my weakness, jittery, dizzyness etc is always soo bad that week, it feels like my blood sugar is soo low, I find if I don't eat enough or go too long without food that week and the week of my periods I get very faint and dizzy, horrible feeling.
May 9, 201412 yr Author Yep sure have, the first time I fainted was my first dentist visit when I was probably 7 or 8 and nearly every visit since, every month I get very weak or faint from my periods aswell, funnily enough the week before them my fibromyalgia is always soo bad and my weakness, jittery, dizzyness etc is always soo bad that week, it feels like my blood sugar is soo low, I find if I don't eat enough or go too long without food that week and the week of my periods I get very faint and dizzy, horrible feeling. Exactly the same my end Sue. Mind you even without the periods (they stopped for 6 months when I stopped smoking) it was still lightheadedness and jittery as normal. The biggest pain I find now is the flamming fatigue and anxiousness, although the could do without any of it now I realise it's not the norm. Just read that teenagers can grow out of it, fingers crossed for our Lucy.
May 9, 201412 yr Author Sue...I will confess I gave going to the dentist up from the age of 18. I have scrubbed my teeth like mad to make up for it but stopped going duebto the nearly fainting everytime in the chair. Was embarrassing and just horrible. Funnily enough when I stopped smoking I found huge 'I can do anything courage' and went last August. Nearly fainted, cried tbh as I felt so frustrated and silly. As it goes not a thing wrong with my teeth...as luck would have it..lol
May 9, 201412 yr You were sooo lucky you got away with it. Lol I stopped going 8 years ago and only went again when I quit but I didnt get away with it, bad gum disease and lost a tooth, I've been 5 times since quitting and everytime they gave me the needle injection thingy I got the weak, dizzy horrible feeling right after it, same at every bloody visit, thank feckkk I don't need anything else done and only back in september for a check up.
May 11, 201412 yr Sharon, panic attacls are a horror to experience but I never heard of POTS syndrome, I'll check out the link :) I wish you and your daughter the best!
May 11, 201412 yr Author Sharon, panic attacls are a horror to experience but I never heard of POTS syndrome, I'll check out the link :) I wish you and your daughter the best! Thank you very much Evelyn. Yes check out POTS..OMG the things I am learning! I get such sore soles of my feet, really hurts-part of it! I can't stand outside sunlight, or bright grey type days, makes my eyes hurt and I feel sick with it-part of it The one though that is something that 'really' needs sorting is the fatigue! I already have a very low blood pressure base anyway and since stopping cigarettes (no longer raising my blood pressure?) The fatigue (which I described as flatness once) is just dreadful. Most days I have to take a 30-45 minute sleep, after work or even on non working days, as I feel so tired I can't even explain it. When most folk stop smoking they speak of this extra energy, I used to think...really?, totally opposite for me as some days my body shuffles around like I'm 80 not only 44. Evelyn, I'm going to crack on with vitamin d and energy drinks as well as loads of water. Our Lucy, thankfully, doesn't get overly fatigued but I am going to get some vitamin d down her too. You know sometimes the chest palpitations were so bad I thought my heart was going to burst out of my chest! Told mum and dad about it all today..long silence...followed by, well yes, when you were young the doctor wanted to put you on tablets but we hoped you'd grow out of it!..mind you, can't blame them as back in the day doctors had a tendency of just chucking folk on tablets for any old thing. It was due to my low blood pressure, sore feet and sensitive eyes that the doctor wanted to put me on tablets. I grew up putting up with it all just thinking it's normal..geeezz. Sorry my post was long Evelyn it's just nice to get it off my chest tbh. My real life friends are dealing with divorce, cancer and a resent job loss..so am not sharing with them, enough on their plate.
May 11, 201412 yr Sharon I am so glad you know what you are dealing with now. I'm sorry that you had to deal with all of this growing up, but I am glad you are now going in the right direction and you may be able to save your own daughter from all of the heartache! Hugs my friend, I think you are very brave :)
May 11, 201412 yr Author Sharon I am so glad you know what you are dealing with now. I'm sorry that you had to deal with all of this growing up, but I am glad you are now going in the right direction and you may be able to save your own daughter from all of the heartache! Hugs my friend, I think you are very brave :) Thank you Ross, just so glad to realise it isn't normal and it will hopefully end...and for our Lucy stop it before it even starts!
May 11, 201412 yr The feet and fatigue etc thing are all part of fibromyalgia what I have, were you ever checked for that? Had an mri done on my feet and have mortons neuroma( tumours in feet), have to get injections in my feet every month so I can walk without the burning pain.
May 12, 201412 yr Author The feet and fatigue etc thing are all part of fibromyalgia what I have, were you ever checked for that? Had an mri done on my feet and have mortons neuroma( tumours in feet), have to get injections in my feet every month so I can walk without the burning pain. No Sue, tbh have never thought to be checked for anything..just accepted and got on with it. Going back in a month (after water increase) so might mention it.
May 12, 201412 yr Before i start, let me say that my daughter has had problems for a couple years and a little over a year ago was finally diagnosed with POTS..and justa couple weeks ago with E.D.S. (hyper-mobility) until then the Drs. said everything from an eating disorder to anxiety attacks to just being lazy was to blame.. I have since listen to my daughter and done countless searches on the net...so...with that said, keep in mind I am no expert or anything remotely connected to the medical profession so take everything I say with a grain of salt and do your own research.. The last thing I would want to do is mislead someone... If I understand correctly, P.O.T.S. by itself is not a disease , but rather a syndrome that develops from other conditions.. It can be caused by many things, and sometimes the initial cause is never found or treated... here is a few links http://www.dinet.org/index.php/information-resources/pots-place/pots-causes Ehlers-Danlos Syndrome (EDS) this is the condition my daughter has that causes her pots ..it was beneficial while she was a cheerleader and in gymnastics in high school, but now those are no longer benefits :( http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome http://www.lifewitheds.com/2009/07/pots-postural-orthostatic-tachycardia.html http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2847865/ By sheer coincidence we live about 1/2 hr away from one of the worlds leading authority on POTS..my daughter managed to get an appointment with him on Good Friday (Easter week-end)...She was on a waiting list for 10-11 months.. and any advise i can pass along would be to find a Dr. who is familiar with POTS..its not a common condition, and most Drs. have never heard of it...so, I urge you to find someone who has a clue..my daughters "home" Dr. is now working with Dr. Grubb and she is showing some improvement. You are correct Sharon about the HUGE water intake and lots of salt (keeps blood pressure up)...1 thing I would also point out is my daughter has to wear "compression stockings" this helps keep the blood from pooling in her legs...She is only 27 and trust me, she would never have been seen in public with something like that before, but now, the benefit of wearing them has her adjusting her wardrobe so that she never leaves home without them .. ;) I only had a few minutes at lunch time here to post this, and when I get more time, I will check back in and post more if I think of anything that would help...feel free to pm me also if you have any questions...Ii am no expert, but I will tell you anything I know :) Joe
May 12, 201412 yr here are a few more links...this one is from my local news station...if I can find more on Dr Grubb I will post http://www.northwestohio.com/news/story.aspx?id=1011503#.U3D3LaIasng this is a youtube video and this one is a PDF file ... http://www.dynainc.org/docs/potsconciseguide.pdf
May 12, 201412 yr You're very good Joe, thanks for all the info, I'll have a proper look when kids are gone to bed, I hope your daughter is doing well x
May 12, 201412 yr I don't hear from her on a daily basis, she lives a couple hours away... ( near our Lady Bug)...but she hasn't called with any news of any more episodes than" normal" ... last "bad"attack landed her in the hospital for a few days with a concussion.. that was a couple months ago. She is still able to work, though she changed positions... this one is less stressful and more forgiving when she can't make it in on some days.. (she is an LSWI... licensed independent social worker)... All in all she now has more good days than bad.... Thanks for asking and keep me posted on what the Doc. Says...
May 23, 201412 yr Author Joe thanks ever so much for the links. Thank goodness your daughter isn't having any attacks of lafe, must be a huge weight off your mind. Thank goodness that you pushed on and got to the bottom of it Joe, seriously. I had to have my varicose viens removed in both legs at only 32 Joe! If only I'd have known about this during my life as I too would have worn support stockings as I was on my feet, in my job, for 13 years. Took Lucy for her appointment yesterday and thank goodness I did! The doctor was alarmed at the speed her blood pressure plummeted when he made her stand up. Says she has postural hypotension so double fluid intake and salt, oh and bloods to be done on Wednesday. I have to have more bloods done on the same day as I am having outbreaks of brusing down my left side? Oh, and to top it off, my heart is going just nuts tbh. The pounding becomes so fast and loud it's a wonder you can't here it over the pond. So ECG is booked for the 3rd of June. All will get sorted out so am not worried now about either Lucy or myself as I feel in good hands. Joe, so the doctor said that Lucy's panic attacks are very likely due to her coming over lightheaded/faint, she panics at the feeling hence breathing goes nuts. Luckily she is educated in the sense she can now sort of spot the breathing problems in it's tracks. Light at the end of the tunnel, fingers crossed. Off to check out your links now so thanks again Joe.
June 11, 201412 yr Author I have fabulous news guys.... Our Lucy is now able to stop her panic attacks before they start, she has made a special effort at reading her body now and takes her time, no fast movements and plenty of water. I am so made up for her. My good news is my ecg showed the doctor exactly what has been going on for the last year. It seems I have Bradycardia and he wants to refer me to heart specialist (I knew something wasn't quite right) So...after chatting with the doctor he suspects the specialist will pop me on medication to raise both my blood pressure and heart rate. I said I was worried about that as this is obviously my natural rhythm (less the few fast flutters I am getting) and I worry it will upset the natural me, if that makes sense? He understands and did say that one of the side effects can be an increase in anxiety....no thanks, already a nervey jumpy so and so..lol. So he has booked me in to see him again in 3 weeks and see how I'm getting on. Getting on much better as I now just take my time and rest when I feel I need to so all good. The doctor confirmed my suspicions that smoking was raising both my heart rate and blood pressure (have smoked since I was 13) and it just goes to show the shite added to them, no wonder I felt so crap without them. So glad to be without them and it's no wonder folk with normal blood pressure or heart rate end up with high blood pressure is it? Scarey really.
June 12, 201412 yr That IS good news Sharon..for you and Lucy...now ,hopefully with a little medicine and self awareness you 2 can get on with a "normal" life......like any of us know what a "normal life" is...lol... Hopefully, what I was able to pass on (that I learned from my daughter) was of some use to you and your Drs. It seems more and more conditions are "discovered" all the time...well...I think these things have always been around, they just didnt have a name, so they were lumped together with other conditions that had similar symptoms... Good luck with the treatments he prescribes for you, and let us know how you get along. :)
June 13, 201412 yr Author That IS good news Sharon..for you and Lucy...now ,hopefully with a little medicine and self awareness you 2 can get on with a "normal" life......like any of us know what a "normal life" is...lol... Hopefully, what I was able to pass on (that I learned from my daughter) was of some use to you and your Drs. It seems more and more conditions are "discovered" all the time...well...I think these things have always been around, they just didnt have a name, so they were lumped together with other conditions that had similar symptoms... Good luck with the treatments he prescribes for you, and let us know how you get along. :) I can never thank you enough to be honest Joe, seriously. I would have no doubt just put it down to depression? Or age? Even without medication so far I feel better mentally as I'm not by nature a mardy arse (am a tough cookie) and it was dragging me down to think it was just me being an actual mardy arse. I rest now with no guilt but in a sense I have more energy as I feel sorted after consulting with my doctor. If I had my time again I would have gone to the doctors 8 months ago tbh, instead of just putting up and shutting up. Has taught me to listen to your body that's for sure! Just great that finally there is a happy ending and I will always be grateful to you for your pm xxxx
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