Suzanne

I agree that if you push you feel bad and if you rest you feel bad. It's a case of degrees of bad. I have learnt not to push too hard, too often as I have paid dearly for it. I have been resting now for 2 months and still feel bad, so I am back to pushing - but not too much. Slowly, gradually and giving myself time out seems to work for me. I guess everyone has their own formula as to what works. I have not yet found the balance, but I hope you can!

I feel for you. I agree that it will still work, whether you are stressed or not. Luckily for me I went in all innocent and had no idea what was going to happen. Even the doctor and nurse said, "nothing will happen, it never does, we do these every week and never get a result", so I was not worried. When I fainted, it was a big one and showed everyone that I was for real. Your body will react to the tilt table as it is meant to, so I would get it over and done with. Try and breathe, meditate or pray to keep yourself as calm as you can. You will be fine! Please let us know how you go.

This is a challenge for me too. I am looking at phone work, low key admin type jobs, maybe working from home in some capacity. My brain is foggy, so I am not up to anything too taxing! I think if it is too structured it can be a problem, as we all have some days where we just can't function and others we can, so if you can find something with a bit of flexibility it is good. I do agree that being on call, doing overtime etc is not ideal, it pushes your body too much. Good luck, let us know how you go.

Congratulations, how wonderful.

My doc thinks the birth of my first child brought on my POTS,(I got up after the delivery and fainted) but I did not know it until much later. I can remember having terrible aching legs, so would suggest the support hose, elevation etc. Regular rests are essential and not pushing yourself too hard. After the birth of my second child, I went straight onto a saline drip and did not leave my bed for 24hours. It made a huge difference to my recovery. It was a battle with the nurses who kept telling me to get up and have a walk, but I knew that if I laid low it would help, and it did. I had horrendous morning sickness with all 3, but don't let that put you off! It's all worth it. I would just keep on with what you're doing, but be extra careful that you don't overdo it. Good luck and keep us informed.

Thanks for the info. I find driving to be a major problem. I am dizzy and spacey most of the time, and have not fainted for ages. But the FEAR of fainting or simply not being able to concentrate for long makes me very nervous about driving for more than about 10 minutes. I am sure that I have an undiagnosed anxiety about this, but does anyone else worry about it and does this stop them driving? Some days, when I feel ok I can drive without a problem, but when I am fatigued, spacey etc, I just can't do it.

Thanks everyone. I do feel better! Recovery is very subjective and I can see from your stories that some of you have recovered - from where you were - but maybe not to where you want to go.

I have decided to aim for recovery - in small steps. Any improvement is a cause for celebration. I also need to be realistic about having seasons of being well or less active too. So this has helped me.

Just wondering if anyone ever recovers from POTS? I know some of the posters here are like me, at home and sick, but does it ever actually get better? Or do you just manage it?

I have been speaking to CFIDS sufferers, and eventually, most of them recover and lead relatively normal lives. What about us? I am feeling a bit despondent.

Guess we all suffer from it, but not sure why. Isn't the blood pooling due to the fact that our BP is low and the heart is working overtime to pump it all around without much success, so it tends to linger in our legs?

I hadn't thought about the exercise bit, I know I am so unfit, so will work on some leg exercises. I seem to remember when I was pregnant that my legs ached unbearably, maybe due to the pooling thing? I did not know I had POTS then.

I am considering buying the compression hose to help - does it?

Thanks

I am sorry that you are not being supported. I think you will need some help. When I had mine done, after I blacked out, I vomited and was really ill. It took me 2 days in bed to get over. The doctor said it was normal as all your electricals are shut down. Maybe your husband can take your daughter out for a long play to give you some quiet time. Hope you can work it out.

Hugs

Suz

I have just started taking the pill continuously and so far it is great. My specialist (who is not a gyno) said it would be no problem. It feels kinda weird not having a period, but it is FANTASTIC not to have the extra fatigue, mood swings and to be out of action for 2 weeks a month. If you can't tolerate the pill, not sure of options, but I am finding it great with no apparent problems.

I helped my kids wash the cars yesterday, only did the bare minimum and woke up during the night with aching legs and today I feel a right off. My legs are killing me. This seems to happen a lot, sometimes without exercise. Does anyone know why and does anyone else experience this?

Name: Suzanne

Birthplace: Melbourne, Victoria, Australia

Kids: 3 boys, Jarrad 17, Riley 15 and Keegan 10

Pets: none

Favorite color: blue

Favorite flower: daffodils

Kitchen theme: modern rustic

Favorite drink: champagne when I could, but gatorade now.

Last TV show you watched: Biggest Loser (Australia)

Last movie you rented: Wedding Crashers

Favorite food: cake, any

Favorite TV show: Grey's Anatomy

Red or Pink: Pink

Favorite ice cream: allergic

Favorite crayon color: orange

Ever bungee jumped? No, feel sick just thinking about it!

Eye color: Blue

Hair color: Bottle blonde

Farthest you have ever been: Canada, loved it.

Siblings: 1 sister, 1 brother

Last time you cried: yesterday

Favorite game: Celebrity Heads

Black or White? Black

Rollingstones or The Beatles: Beatles

Last food you ate: Porridge

Diamonds or sapphires: diamonds

Beach or the mountains: Beach

Sweats or jeans: Jeans

Ever went skinny dipping: Yes

Married more than once: Yes

What book are you reading now: "Where is God when it hurts?" by Philip Yancey and "Brokeback Mountain" by Annie Proulx

Hobbies: Reading, movies, walks on beach, playing on computer, going on forums etc.

Favorite actor: Russell Crowe

Favorite actress: Nicole Kidman

Favorite candy bar: allergic

Ever toilet papered someones house: No - never even heard of it before

Gatorade: lemon/lime (we only have a few flavours here)

Favorite Fruit: Mango

Men with facial hair? Cleanskins only

Steak or lobster: Steak

Gold or silver Gold

Sorry to hear of your scary episode. It sounds terribly frightening. I hope you can recover quickly. Do you think your study is pushing you too hard? I know I cling on to work as a sanity saver, but at what cost? Hope you can balance it all out. Take care. Hugs

Just starting it and praying that it will work as nothing else has. Goosebumps, head in a vice, massive palpitations, legs aching are the symptoms so far. Have cut back from 6x 5mg day to 3x day, and the side effects are better, but not feeling any better yet. However, I did stand talking to someone for 10minutes and am paying the price today.

I feel for you. I am in a similar place. I am so lightheaded when I drive that I can't focus and I am scared of having an accident. This fear brings on anxiety, which makes me worse etc. I tried Moclobemide last year and it took over a week for it to physically settle in my body. I wanted to give up, but was persuaded to keep trying by a nurse. However, it did not help me and I had to go off. Now, I am housebound and really need to get out, so will start another anti dep. I suggest you talk to your doctor. Maybe you can try another, or maybe a different dosage. If you feel you need it, I would stick with it. It's all linked with POTS, so it's not like you can just give yourself a good talking to and snap out of it. Good luck, I hope you feel better soon. Let us know how you go.

I also have many of the same symptoms reported. I get blurry vision, spots in front of my eyes and find it very difficult to talk. In fact, I feel very light headed reading about them all. I am going for a lie down lol

Great news LindaJoy. Looking forward to some info for us potsy people Down Under! Does he ever go on tour?

I find that the physical and mental go together. I first get the physical, whammo! Then, I am so vague, fuzzy, spacey that I just try and struggle through with minimal exertion. When the physical seems to improve, so does my mental. Maybe it's like the chicken and the egg?lol

My legs and arms ache all day and night. If I am really flat, my face aches as well! I just thought it was part of POTS and have no answers as to why and how to relieve it. I rest, I stretch and if it is at night, I take paracetamol. I thought heat would make it worse? Sorry, not much help here, but thought I would let you know that I feel it too!

This has been helpful, I confess I still find it all confusing. My doctor is very short on info.

I was amazed to read that Dr Grubb recommends 20 mins aerobic exercise , 3x/week. Is anyone able to do this? I would love to, but find I have a bad reaction every time I exercise, even a little.

As a mum with 3 kids, I feel for you. It is so hard, you just want to do your best for your son, and I am sure you are and he knows that you love him, that is really the main aim of parenting.

Your doctor problem is major, but I encourage you to keep trying until you find help. Can you see Dr Grubb? Save up, etc. Is there another place that is the best around? I have always tried to find the guru in the medical field. The locals mean well but sometimes just aren't up to it. Maybe there is not a lot to be done, but at least you can eliminate everything and know that you have tried. I hope you can keep up your spirits and hang in there, you are worth it

YES, HATE IT!! Not just the pain, but the mood swings, teariness, "woe is me" feelings etc.

Asked my doc if I could go on birth control and stay on it and not have any periods. He said yes, there are no problems. Luckily I can tolerate the Pill quite well, apart from bloating and low sex drive (non existant since pots!). I am going to check with my GP as well as there may be some aspects that male doctors don't know about.

I would investigate hormones and try some natural remedies. I take Evening Primrose Oil, I don't know if it really helps, but it can't hurt.

The only other remedy I have is that I try and treat myself with something that I like to do, eg hiring a video that only I like to watch, ordering take away, or having an easy dinner etc. Even being at home, it is easy to have a list of stuff to do, so I just don't on the days that I feel really bad.

Hope this helps and hope you can find something to ease it. It's a bummer!

Thank you all for your replies. It does make me feel that I am not alone. I can sense the acceptance and positive outlooks from you all. I hope I can get to that state soon. I am glad that you are feeling positive about your kids Dianne as I do worry that my kids will feel left out, or different.

I had a bad day today, finally admitted to myself that I am depressed, have anxiety, can't drive right now and best of all, admitted it to a mum I rang in desperation asking her to take my 10 year old to Oztag. I feel calmer and ready for the next step. Trying to hang on is so energy sapping. I am sure everyone around me can see I need help better than me.

On a positive note, I am appreciative of the opportunity to talk to my kids, especially the teenagers. I know if I was well, I would be so busy that I would miss these moments.

Thanks for the positive post. I am just about to start Midrodene and was concerned that it would be a failure like all the others and also about side effects. I now have a more positive outlook, so thanks!!

My worst fears are coming true. I have become housebound and find driving to be just about impossible. I feel spacey all the time, my body just aches, feel dizzy etc. No meds have helped. I just feel like a total loser not being able to function. I also have 3 kids to organise and it is so stressful trying to arrange lifts etc. Is anyone else in the same position?