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My daughter is hyper pots. She had horrible side effects of nightmares and feeling scared all the time with propanolol. Nadalol made her feel horrible and all her joints ache. She is on 6mg of Metoprolol twice a day now and is tolerating it very well. She is super sensitive to any medications so we have to start very low and go up very slowly. Exercising helps her a lot. She can't do much yet but we try to alternate strength training and cardio days. and not a high salt diet, just a salty diet.

Yes we did and they recommended a Dr in Edmonton who was great. But I wondered if there was one closer to home (it's a 3 hr drive) and he isn't seeing us regularly, just as a consult.

Hello, I am wondering if there are any parents here who are dealing with teen POTS in Calgary? We are looking for a paediatric doctor who knows how to treat this. So far all of the kid docs are in Edmonton. thanks

Oh thank you! I have never heard of that medication. Will ask about getting it for sure. Thanks for all the tips. I am trying my hardest to get her in ASAP, which is proving more difficult than it should be.

Is he good? That is great to know. I don't think he sees children but i will try to get her in. I know there is a Dr Stewart in Edmonton too. I wonder what the wait time is going to be like. I can't stand to sit and do nothing.

She was feeling so encouraged Friday. Still struggling with normal activities but at least out of bed and out of the house for longer periods. Swimming everyday. However, the thing that bothers her the most is this non-stop headache for 2 months now. The neurologist wanted her to go on amitriptyline to help with the pain. I had a bad feeling about it and only gave her 1/4 dose. She is super sensitive to medications. Half an hour later she felt so badly she had to go to bed. In the mooring her head was so painful we had to take her to the hospital. Now we are three steps back from where we were. This is so frustrating. Still waiting to hear when we will see a specialist! I have been researching and think she may have adrenergic POTS as the symptoms fit and I can see them in all my family members. My cardiologist actually put me on a high salt diet just a few months ago for upside-down Twaves and high heart rate when exercising but he didn't know why it worked for so many women he sees. I just want to see her better. If we aren't going to be seen here in Alberta soon then I want to take her somewhere else that will see her faster. Our family doctor doesn't know anything about POTS. I don't think I could afford to go to the US for treatment though. Maybe somewhere else in Canada?

Thank you, I am feeling more encouraged after a better day yesterday. We have figured out a system for the pool (using the handicap shower and dressing area so she can sit) and it went better. She had a very good day until after supper when her headache got much worse. I have her seeing a physiotherapist who also does acupuncture. I am going to inquire about a membership at the Y for her to work on strength training but since she needs assistance I am not sure if they will make me buy one as well. It is so hard because they cannot see she is sick. Looks normal. She is asking to swim everyday. She finds the bike harder but I will encourage her to work up like you suggested. I think I will decrease the salt and fluids a bit. She used to sleep great but now tosses and turns all night and I am not sure why. I called the neurologist to find out how long the referral to the specialist will take but no answer yet. Should I take her to a naturopath while waiting? I eliminated wheat and dairy then reintroduced. The wheat seems ok but not sure about the dairy. Do I need to wait before starting all of these things until after a tilt table test? She only had the heart rate test standing and BP at 3 min and 10min. Heart rate increased 41 but BP stayed almost unchanged. I would imagine the specialist will do a more involved test?

thank you, this was just what I needed tonight. We are only just starting our journey and I am very scared. I hope we get some treatment soon.

This is all new to us. Our daughter has been very sick for 8 weeks with what we were told was a migraine. But then last week they did the stand up test for POTS and her heart rate jumped 41beats. Now she was put on high salt diet and lots of fluid by the neurologist and told to do as much activity as she can tolerate. We started the high salt diet about a week ago and she is doing better fatigue wise. However, she is becoming more light headed when getting up from sitting. She can't do any of her normal activities. She can't even go to school. She does ok at home resting when she feels she's been upright long enough. I took her to the pool today. She loved the feeling of no gravity. However the showering and dressing afterward were too much. How do we find out what is causing this? They think it is inactivity but I don't. She was an athlete up until the headache and severe fatigue started. We are waiting to see the specialist but have no idea when that will be. I am worried about all this salt she is taking (5g) and all the water(4-5L)she is drinking. I am worried I will never see her back to normal. I am worried no one is doing anything while we wait. How do we find out the cause of this? It is not Lyme. They checked that. They checked her adrenal and they did MRI and CT of her head. All blood tests are normal.

Great thank you for those tips on getting in the salt. Will give those all a try. Today was a much easier day getting the salt in. I was able to add 1/4 tsp to her scrambled eggs this morning which made it a whole lot easier to get the last 1 tsp in through the rest of the day. Her migraine is still not easing up and the doc was going to switch her flunarazine to elavil this weekend. But this has been the best she has looked in weeks so I don't want to change anything yet since we have only been on the salt diet since Friday. I also read that POTS pts don't do well with elavil because it increases heart rate? I thought with the fluids and salt the headache would go away :-( She has had it for 8 weeks.

I was thinking of making one as well but how do you make it palatable without sugar? For sure I have noticed she doesn't tolerate the capsules at all. She has been doing well with pretzels, chicken soup and salty eggs.

just heard back no indication of pressure in her head.

Thank you everyone for your responses. We went back to the hospital and saw the neurologist on call. She said that she thought the back pain was muscular and should be better soon. They tried to give her some morphine but she was feeling horrible with it so they stopped it. Seem ultra sensitive to medications like me. They don't believe the pressure on the spinal tap. They think it was a side effect of the anesthetic but sent her for eye exam with the neuro-opthamologist today. We have not heard the result from that yet but I think the tests were normal. Now we are waiting for the diagnosis so we can move forward and get a doctor referral for the POTS centre here. The salt and fluids help but we are only giving her about 2g of salt. I find it very hard to get it in her diet. We bought salt capsules but she seems worse with those? Has anyone experienced that? They are only 1 g. Make her quite nauseated even if taken with food. Why would the dietary salt make her look so much better but the capsules make her worse? Also noticed any sugar makes her worse. When they did the standing test her heart rate went up by 41. I think my sister has EDS what is CRPS? Thank you

quick question, if they give her caffeine will that make the POTS symptoms worse?

thank you all so much. I have a call in to the doc about possible spinal leak. Hopefully get some answers. That was exactly what happened with the socks! It was like she was low on oxygen! She started feeling like passing out and couldn't stop yawning!