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Having a bad time


Louby
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I have had the worse couple of days :)

It all started last week when I was feeling really exhausted, come the weekend I just slept and slept. I also kept getting increasingly thirsty and the pains in my arms and legs started to get worse. I am waking up in the morning, gasping for fluids, for the past two days I have been drinking around 2 litres before leaving home - I am a bit worried that I will drink too much. All the usual techniques that I follow to get myself up and going are not working, and the pains are getting worse and are lasting longer. I am going from so hot to so cold and I feel so sick, I have lost 4lbs in the past two days. I keep going from being starving hungry to the though of food making feel physically sick (this food issue is quite new to me) I also have this throbbing pain in the pulse points in my neck, and my heart feels like it is going to jump out of my chest. Last night when I arrived home, I laid on the sofa and rested for ages, when I stood up, I had to practically sit down straight away, within about two minutes my heart was beating at around 150+ My head is so fuzzy.

I have tried loads of things, and I have now reached the point, where I just don't know what to do for the best, I cannot take the thought of the whole "passing" out thing happening again, and this has almost happend on a coupel of occasions - for some reason the POST is just spiralling out of control, I've been so lucky up until now as I have always had it fairly under control - I just don't know what to do - i wish there was some kind of magical solution that would just make you feel better even for a moment

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Guest tearose

Not good! Go to the doctor/professor! Wish I could meet you for some hot tea, scones and clotted creme at Harrods! Well, it actually sounds like you need some protein and electrolytes and I know you don't want to hear this, but you need to get off your feet and take a rest too. If you absolutely can't rest then did you find the compression pantyhose yet? They lower my heart rate and after the tug and pull of getting them on my legs feel so strong and good in them! Can you find any electrolyte drink there? I am not familiar with the pharmacies in London but there must be something very similar to what is here. I drink the mix that is intended for infants because it is just the right balance of water to sodium and potassium. When you drink lots of water without replacing sodium you can actually feel and get worse! If you don't find any electrolyte mix, or can't ask your professor/doctor about this suggestion then just eat more salt tonight. Take smaller steps, be gentle with yourself, you will get through this! Sending you healing thoughts, tearose

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you are one of the sweetiest people, thank you - it's so difficult, burst into tears reading this, more from relief of someone understanding (can't speak to my boyfriend today, as he is really busy - also don't like him to worry to much as he would want to come and get me and he can't today)

Shall go and get myself checked out by family doctor tomorrow - although he has limited experience of POTS, then call my proffesor with blood pressure readings etc - the way healthcare works in the UK is complicated...

Convinced my boss that I should spend the day tomorrow "working from home" I've never thought of taking electrolyte drink before, but yes we do have this in the UK and i shall give this a try. No luck with the panty-hose, still got the flight socks.

I've been taking salt in diet coke, this afternoon seems to work for a while but the pain in my hands is just horrid - have to attend a meeting, as soon as this is done i shall disapear from work.

Tea and scones sounds fabulous, thank you so much for the support it really does mean so much

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Hugs from across the oceans to you dear. It is heart breaking when we are in a downward spiral. I know that sense of unpredictability as we search for what will help and nothing seems to work. We try things that "use" to work in the past and they don't seem to help now. It is very frustrating, terribly sad and quite frightening all rolled into one.

Aside from all the good advise about checking with your doctor I would add that these are the quiet times when we have to listen to our own bodies wisdom. Eat when you can and don't beat yourself up when you just feel like you can't, lie down if your body calls for this -- even though you have 100 things to do and you feel so disfunctional on your back. Give yourself time, it does get better again.

It is the groundlessness of this moment, not knowing when we will feel like ourselves again, that makes it so hard. So break the moment down into a tiny little piece ... find a comfy pillow, take a slow deep breath and just try to be with what is ... instead of what we want it to be.

Oh, and most important ... PLEASE remind ME of this same thing the next time I can't rise to the occasion. I forget it myself all the time.

Good thoughts your way,

EM

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Hugs from me too. Seems like when our symptoms increase it really throws us out physically and mentally. Seeing the doc will help see if there is something you can do to help. I know I've been fighting off a cold and my symptoms have been way out of wack, it's the little things that can throw us for a loop. Something?s I?ve found that help is drinking Gatorade and other drinks with electrolytes like they said before. My friend also found this spray salt, that I keep with me for emergencies, I know how sad to take salt around with you but seems to help when I need a quick fix. And rest, if your body needs it you unfortunately have to give in, I?m one that needs reminding of this too cause I push myself and then end up in bed longer than I probably would have if I had just slowed down. Keep in touch and let us know what you find out, sending good energy your way!!

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I tend to get very symptomatic when I'm getting sick, such as have the flu, sinus infection, or even just fighting a cold. If your symptoms don't slow down, go to the doctor.

Hang in there! Nina

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Thank you for the support, I don't know how I managed before the forum.

It is so helpful to know there are other people out there who understand, and can remind you to listen to your body, and to do the things that maybe deep down in side you know that you need to do (the things you would tell other people to do).

It's great to be told/reminded that it's ok to rest and that things are going to be ok, and because you guys all know exactly what this is like- it seems to make so much more sense, it's nice to know your not just going crazy and that your not alone.

So I am pleased to say that I've taken your advise, and rested when i needed to and done things when i felt up to it - i do feel more calm, and i guess I just got scared there for a bit, but you have all really helped.

I've placed my pantyhose on order - i had a choice of tan or honey, i went for honey (hoping these are not too brown!) I have a fluffy pillow, which i have sprayed with lavender oil for relaxation, and i am taking today at my own pace.

Thanks for reminding me what to do, I don't feel my best but i feel more like i can cope a bit better , and my lovely boyfriend has promised me a slap up curry tonight - with extra salt!

Thanks so much, hugs back to you all, and i will be here for you should you need me

take care Louby.

just a final word, genie what is a salt spray?? I tend to carry little sachets of salt around with me. and find this very interesting...

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I will get the actual name from my friend, she gave me a little plastic spray thing that fits in my pocket book and it's liquid salt, I think called salt spray but will ask her, she found it in a health food store, so it might be sea salt spray, but it's great to spray on crackers or in your mouth, very salty :) but good for us to have! Will get back with you on the proper name and any other info she has for it.

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I really feel like the worst part of this illness is the emotional side! I have found that the more you allow yourself to dwell on the symptoms the stronger they get! For me as well as a few others I've read just allowing yorself to rest and relax helps alot. We didn't ask to be ill so we have no reason to feel guilty about it when we are. I also value this site tremendously because when I get really down I feel like I'm "bothering" my friends and family by "whinning" I mean I already depend on them alot and even though they love me and try to understand they really don't have a clue.Although I dont like to consider myself helpless every once in a while I think we all feel that way! Just hang in there and know that we DO understand how hard it is and feel free to contact me any time!! Best Wishes!!!!!

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Dear Louby

The first thing you need to do is get yourself on the right medication. I am on a Beta-blocker for the fast heart rates. It is an improvement but not a cure. You heart beats much slower but still goes fast when it wants to. As for the pain, I am building up a **** of a pain threshold. Some days I cant even ware shoes my feet are so sore. I have leant to live with this and accept it. When it gets really bad I take bruffen, which helps fantastically. As for the chest pains, take magnesium tablets they help allot. They also help you to sleep better. Fluronif is okay for the blood pressure. You don’t pass out quiet as much as you would.

The best advice I can give you is to pray, put your trust in the Lord and he will give you strength to get through each day. Accepting what you have is the best cure I believe. Pots is becoming normal for me and I accept all the things going on in my body. You are in control and happiness is a choice. I hate mornings with all my heart. On very bad mornings I pray to God and thank him that I can walk, see, hear, breath, ..... etc. Put your emphasis on what we have and not what we don’t have. Just watch some TV or read a book then you will realise how much we have to be grateful for. My health is only getting worst and I can’t do anything about it.

As with regards to talk to healthy people, forget it they will never understand what Pots is. Physically I look okay, but internally my body is having a party. This morning I was so drunk I walk into the wall. (I don’t drink at all, blood pressure) Find a good doctor and talk to us, healthy people don’t get it.

If you would like to e-mail me personally you are welcome. I would love to support you and advice you when you are having a bad time. stoltz@cri.co.za

Good luck! :P

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I agree with your comment on the beta blocker. They help, but it is not a cure. My wife's heart rate has dropped significantly, but it is not consistent by any means. Another problem with the beta blockers is that they are good at lowering your heart rate, but they are also very effective at lowering your blood pressure as well. Unfortunately, many POTS patients already have low blood pressure. My wife used to be on a "cocktail" of drugs. Proamatine (sp) and LoPressor were the two main ones. The LoPressor was supposed to counter-act the side effects of the Proamatine (or the other way around, I don't remember). Eventually, they became ineffective (actually, fairly quickly). She is now on Nadalol (I think that is right) and it has done wonders for her heart rate. The side effects of these drugs can be almost as bad as the symptoms.

My wife called Mayo when she had some problems after they put her on this "new" treatment. Their response was "You should just be getting better now". And again, this is from a team of supposed experts.

Hang in there. I know my wife goes through very bad days. She mainly struggles with issues with her self worth. That is also the hardest one to help her with. I agree that prayer is very good.

It is an uphill battle, but all I can say is keep coming out here. I know for me and my wife, it is a huge relief to see others experiencing the same things she is. Not because we like to see others suffering, but rather the fact that she knows that this stuff is more typical than the doctors say or even understand.

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Hello Everyone,

today is better.

I have incredibly low blood pressure, so not sure if a beta blocker is the thing for me. I am actually awaiting a long list of new tests, due to the change in my symptoms - my doctor has also told me there are new medications that may be suitable, I just need to hang in until the tests are completed.

Thank you for all your well wishes, advise and support

Louby

PS - tried the electroylte sachets, these work a treat!!

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Guest tearose

Hi Louby!

It was so good to see your post and hear that you are feeling a bit improved.

I hope the test results will offer you some new insights...and if there is a medication that will help you great. Don't fret if you can't take a beta blocker, I can't because it would cause my heartrate to swing too low.

I'm glad you found the electrolyte packets...now, acting like your big sister here...be sure to get the compression hose too! I know they can be expensive but they feel wonderful, last long and truly are worth the expense. I know I'm being insistant but it is a non invasive, easy to try aid and in some people, it is just the little bit extra counter pressure they need!

Keep hanging in there and thank you for the update. Wishing you more strength, more hugs and still some tea and scones. In friendship, tearose

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Hello Tearose!

Unfortunately in the UK, most chemists don't stock the panty-hose, but they are available on order. I have ordered my panty hose, from the chemist and can't wait to get them. (seem to remember i went for honey coloured, although not sure now if i should have gone for black) Whilst expensive ?12 (about US$21.84 by the current exchange rate) they are cheaper than I had thought, about the same price as my flight socks, and if they work - it's so worth it.

Thank you so much for all the advise over the past week, it has been greatly apreciated, and made me feel so much stronger, it's just so nice to know we are not alone.

Take care of yourself.

L

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I'm pleased your insurance covered them! I hope they have given me the right price...

When it comes to medication and things like this, I am so lucky. I have insurance to see my speciallist, which is great otherwise I would still be waiting two years on.

But all my medication is covered via my doctor (which is a free service) and then I just have to pay ?5, reagrdless of the actual cost of the drug.

We are very luck to have a national health service.

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