Suzanne

Wonderful news, thanks for sharing it with us. It is amazing how wonderful motherhood is and how taxing! I am so glad that you are enjoying the experience. Treasure every moment and enjoy Britney. You just don't know, your health may improve and you may be able to have another. If not, you are incredibly blessed, so many people can't have any. Enjoy

Welcome, sorry you are feeling so bad. I had a chuckle at your potential career - visiting doctors! I think I can add this to my resume too. I don't know why everyone is so keen to tell you/us that it is all in the mind. Why would anyone want to make this stuff up? I would encourage you to listen to your instincts regarding your health and see docs when you have a real need and have the energy. If you are very stressed, and this is very understandable, this is an area that you can deal with and will help with your health. Enough babbling, WELCOME

My husband gets the throat thing from eating dairy, soy and wheat. He does not have POTS. The stabbing pain does not sound good, but not sure what you can do.

I have found that I am highly sensitive to new meds. So I generally halve the dose and double the time. This way your body has time to adjust. I think it is a bit of trial and error. I was on Zoloft and became highly agitated and felt terrible. I am now on Mirtirzpine (I think it is called Remeron in the US) which, from past posts, does not have a good reputation! However it helps me. I also have been told that meds alone won't fix the anxiety. CBT is also required. It is not a short fix, but long term it does help. Hope this helps and you are coping ok.

When I stand, from lying down, my BP always drops by at least 20 and my HR always goes up by at least 15. I have been diagnosed as POTS only. Not sure where this leads, but sounds like there are variations. I know my general readings, so if they change too much, then I am worried. Not sure if this helps? !!

Headaches are terrible and I would keep searching till you find a med that helps. Some POTS meds make my headaches worse, you have to weigh up all the benefits and costs etc. I suggest you make sure your neck and back are all in alignment so it is not structural. I know that I get terrible headaches during my periods (not sure if that applies to you?). I take Feverfew, it is a herbal remedy and Vitamin B2 on a daily basis and this seems to help. I also have Cafegot med to take right at the start of the headaches. If you wait until it has kicked in, it doesn't work. Dark room, plenty of water and rest helps too. Hope something gives you relief soon.

This is a major challenge for me. I was surprised by the Vanderbilt guidelines being so casual. I have been at both ends of the spectrum. Before diagnosis I drove everywhere without a problem. But after getting ill, I have been very dizzy and light headed and started restricting my driving as I just did not feel confident that I would not pass out. The brain fog also worried me as I did not feel I could concentrate when it was busy traffic. It got to the stage that I become fearful and anxious and suffered panic attacks, so stopped driving altogether. What a pain in the you know what not to drive. I have 3 kids and no family support, so I need to drive, and drive safely. After a few months of being reliant on people to drive me around, I saw a pyschologist to try and overcome my fears. Now 6 months later, I am driving, but with limitations and still battle anxiety, especially when I am very tired. Like others who have commented, I try and drive when I am feeling well (not that I actually ever feel well, but you know what I mean! ). I drive between 10-5pm if possible. Nights are out unless it is under 2kms. I also make sure I have eaten, have water and chew gum for nerves. If I have to travel further than my usual route of not straying more than 10 minutes from home, I take someone with me. I encourage you not to give up, if you can drive a little it is so helpful, builds your confidence and hopefully will open up some work opportunities. I would try small steps, very gradually. If you would like to know my graded program, please message me and I will give you more details. When I drive I notice how many crummy drivers there are and think that I must be better than them as I am very aware of my limitations. Good luck, keep us posted.

Wow Dionna, that is a really tough case of dizziness. It must be terrible. My dizziness comes when I lie down and then stand up. It usually last for 30 seconds or so. I also get it when I stand for longer than 5 minutes. If I am moving it is not as bad. Sitting for an hour or so gets it going. Noise, neon lights, shopping centres, hot rooms etc all make it worse. Florinef has helped with it. I will get it at the computer if I sit here for 30 minutes, which is pretty good I think. Generally, I find that dizziness will come on most of the time, but if I lie down and rest for 10 minutes, it settles down. I hate it, especially when I am about to drive. It makes me panicky that i will pass out, but I actually don't much anymore as I know the warning signals and try to avoid the triggers. Hope this helps.

I feel for you. I have 3 kids also. Luckily the older 2 are teenagers so I just get them to do their own. It stops all the arguments also! For my 10 year old, I tend to work out what I want, go straight to the store (something big like Target with a good range), don't browse, just select very quickly and only stay for a maximum of 20 mins. Then if anything doesn't fit (often!), then I get my husband to return and get the right size. This way he doesn't have to think about it what to buy. I make sure that the store is OK with returns, so there is no problem. Shoes - tough one. I would take someone, or send hubby if possible. Try and go in quiet times. I hate the noise, lights etc but can endure it if I rest before and after etc. I am not yet ready for a wheelchair or cart. Is it pride? I am just trying to pretend I am still normal. Ha ha! Good luck, let us know how you go. Suz

Hi Rob and Welcome. Your dehydration is a major issue, so hope you get some help soon with that. When I was first diagnosed with POTS (after thinking it was CFS for 2 years), my doctor said a tricyclic was the worst med to be on. I take salt tablets (6) daily. I find it is too hard to try and eat the amount of salt that I need. I just don't like all the foods with a high sodium content. My blood pressure drops when standing and this is a real problem for me. There seem to be a lot of variables with this crazy illness. I wonder if it is better to have CFS, eventually people recover from it. Does anyone recover from POTS? About 30% I believe. Hmmm, not great odds either way. Anyway, this forum is great and I am always learning on it and everyone is very helpful. Take it easy. Suzanne

I got a flu shot 2 years ago and had a major setback. I won't get one again. Maybe my system is just too sensitive. I haven't had the flu properly for a while, all my isolation probably helps keep me away from the germs. There has to be an upside to all of this!!!!

I feel for you, but what have you got to lose by telling the truth? Like you say, you didn't ask for POTS, so you have nothing to be ashamed of. It seems that you are having trouble finding any meaning for your life and whilst this is understandable, maybe you can use this to find some positives and meaning to your situation. If you are more comfortable about it all, then it is easier to tell others. I know, it is easier said than done! It is hard not to feel shortchanged, but you and your values, your core person, your relationships etc still remain, despite your illness. Your friend may be very understanding, who knows what challenges he has faced. Also, if you are to have a friendship of any type, better he knows where you are at - truthfully. Good luck!

The doctor ordered the retest. He gave me a simple blood test first, then he ordered a special test where a guy had to especially come out from the city to administer it. He took blood, then gave me a shot of something that I felt hit my body like a lightning bolt. I felt disgusting and nearly fainted. He then took more blood 30 mins later. I actually thought I might have had it because I certainly felt like my adrenals went into shock. Anyway, all was ok. I don't think the doctor realised (or cared) that it was so taxing on me. Won't do it again

Ouch, I feel for you! I know that when i overdo it i ache all over, sometimes for days. It slowly seeps away but I can't fast track it. I also feel heaps worse when it's that time of the month, so I take pain relief then. I rest, put my legs up, keep up the fluids (as always). I tried going for a little walk to try and work it off but it was too hard. Hope you feel better soon

Yes, twice. Doctor was convinced I had it, but I don't. Apparently if you do they give you meds and you are fine. But it is very serious, so I was glad that I didn't. BTW, they give you a needle to test your adrenals. It gives them a huge zap. I had to have a rest for about 30 mins afterwards and food before I felt ok.

Hey I am a virgo too!! So is my husband, so he expects a high standard, whilst I have let go of most cleaning, he can't cope too well. I have a cleaning lady once a fortnight and he complains that she is not good enough!!!

I am so sorry that you are feeling so bad My POTS doc said that flying affects me due to the dry air in the cabin, so be sure to take plenty of fluids. This may be tricky now, but with a doctor's letter, may be possible. He also said to move around, wriggle legs etc to help the blood to flow in the legs. I know i always feel terrible for at least 2-3 days and longer if it is west to east. But if I was really sick and thought there was a chance of help at the other end, I would go. I am a mum too and it is so hard to leave kids, but they will survive. They need their mum as well as can be. Take care.

Thank you Kel for your encouragement and for your words of wisdom below: "I try to look at what I did accomplish and not on what I didn't accomplish" I realise that I only look at what I can't do and I am going to try and focus on what I have accomplished. I try and encourage my kids with that, but don't do it myself! And yes, tomorrow will be a better day I am sure.

I just cleaned my stove for 10 minutes and I am exhausted, head spins, feel sick etc. I did it just after breakfast which was a bad move as my energy is low in the mornings. It just looked terrible and now I am paying for it. Does anyone else get so tired so quickly? Is this POTS? I am so cranky as I am supposed to take my son to work later and now I will stress about it as I feel so bad that I am not up to driving. Whilst I am venting, I hate the uncertainty of POTS, you just never know how you will feel and I hate letting people down if I have to change plans at the last minute. Anyone else feel this way? I am going to sit and watch a DVD and try and get over my frustration. Thanks for listening!

I try not to panic as I fear fainting on the street. Then, I slow down but keep walking. I count my steps to try and focus on something else. If I keep feeling faint, then I rest wherever i am. I always fuel up before walking, take a drink and eat an apple, or carrot etc so my blood sugar is up and take my walkman so I keep distracted as I usually feel like I am going to faint when I walk, but I pretty much don't. When the road seems to roll up and down like a wave I know I am in trouble and head home. Recently, my husband and I were shopping in a ritzy store and there was not one chair in the whole store. So I sat down on the floor of the change room, just about passed out and the shop assistants couldn't care less! I looked like a drunk! Eventually, I had some food, drink and felt better and wobbled off to the car.

Welcome, this is a great site and very friendly 9 years is a long time, I bet you are sick of it (and bananas too!). We have had a major cyclone ruin our whole country crop of bananas, so they are like gold here in Oz. I love them, but didn't know I should be eating them! I just take a Potassium tablet each day, maybe that will work for you too.

Grocery shopping brings on everything POTSY for me, including aching legs and dizziness etc. Do you take salt? Do you exercise your legs? I find that by slowly building up the muscles in my legs, they are getting stronger and less crampy. It sounds like you might be lacking something, but what? Sorry, not sure, but you are not alone!!

I am wondering why they took you off due to your lack of mobility. Don't you still get hormonal fluctuations regardless of your mobility? Activity level is about 30% on the CFIDS scale. Not sure if there is a POTS scale. Basically I no longer work, can potter about during the day, can go for very short trips in car, must rest every afternoon and between activities. Can only stand for 10 mins, then feel like passing out. My doc has just prescribed oestrogen tablets for me to take when my period comes to help with migraines. Can you see another doc? If your instincts are telling you something, then suggest you listen as you know your body best. Take care

I would check with your doc. I go all day too, I drink about 2 litres of liquid, so I guess that's why. Is your urine burning you? This may account for the rawness, ask your doc.

I just hate the anxiety side. Give me physical pain any day, I find the anxiety is so crippling. I take Avanza, it has a sedative effect and wiped me out for a week. Then my body adapted and it really has taken the edge of my anxiety. I suggest you give Buspar a good go and then make a decision. My pysh told me that no drugs can actually cure the anxiety, but can help you cope. Then you need the CBT etc. I hope you go well with your therapy and find a drug to help.