Feeling Very Scared For Daughter

[sue.zee.q]

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.

[Katybug]

Has she actually had a full 45 minute tilt table test? POTS is strictly about HR. A person can have multiple forms of autonomic dysfunction. For example, I have POTS but I also have issues with my bp fluctuating. It's not quite orthostatic hypotension but it's some form of autonomic dysfunction. It is hard to pick up. My 1st tilt test did not catch it. However, my second tilt test did catch 2 very sharp dips in my bp because the monitors were taking constant instead of periodic readings of my vitals.

Also, migraine is very commonly found comorbidly in dysautonomia patients. As far as I know, they haven't figured out what the link between the two is. I currently have chronic daily migraine and it is treated separately from my POTS, although by the same neurologist. There has never been an expectation that my POTS treatments would make my migraines better.

My best advice is to take it a day at a time. The "what if's" become too overwhelming. Many of us had to treat symptomatically (sp?) as we then went through ruling various underlying causes in or out.

I know this is scary but try to remain focused on what you can do, not what you don't know yet.

[MomtoGiuliana]

I certainly understand your fear. I, and many of us here, experienced or are experiencing similar symptoms, and fear. 13 yrs ago I had very similar symptoms. I was disabled and homebound for months. After about a year I was able to work part-time. I now work full time and have a full and busy and pretty normal life. I still take meds, fluid load, etc, but my symptoms are minimal most of the time.

I have been on this forum for years now and I have seen many members come and go. For the vast majority (from what I have seen and what the literature seems to claim) symptoms improve. For many, greatly so. It does seem to take time (my specialist told me in his experience recovery takes on average 4 years), it takes finding the right meds, for some people, it may take eliminating allergens or other triggers.

It is still a pretty mysterious condition. There is not a lot of research out there still and many of us don't really know the cause of what we have.

I do want you and your daughter to have hope she will get better bc it is reasonable to have that hope! Diagnosis and treatment by a specialist will greatly help.

[looneymom]

I am so sorry this happening to you and your daughter. One of the best things you can do is to her maintain an exercise program that she can tolerate. If she has POTS, she will feel bad and will not want to exercise. If she does not exercise, she can become deconditioned. However, keep this in mind, exercise is good for everyone whether they have POTS or not and it will not change your results of a Tilt Table Test. I have read many stories of people that were very healthy and doing sport activities and POTS hit them like a ton of bricks. Exercise does not have to be done everyday.

My son was an active 10 year old boy before POTS got the best of him. It took me 10 months to find a doctor to make the diagnosis of POTS. He was not able to attend school either and had to do a homebound situation. The year after the diagnosis was also rough because our doctor was trying to find medications that would help stablize his heart rates and blood pressures. They were all over the place and he was having viruses and infections about every other month. The additional sickness on top of POTS did not help and caused other problems. These other problems were most likely the underlying cause of his POTS. However before this other problem sent him totally down , he did have a three month period of being able to stand up, walk around, ride a stationary bike, do physical therapy exercises and function as close to normal as possible.

This is the exercise program that he could tolerate. He did not exercise on Saturday or Sunday. His core strenght was weak and so was posure. He started out sitting on a bench (without a back) for one minute on days Monday, Tuesday, Thursday, and Friday. He did not exercise on Wednesday. To take his mind of this exercise, he would play on the X-box. He did this exercise in the morning and in the afternoon, he rode a recumbernt stationary bike for 1 minute. The goal of these exercises was to build strength, stamina, and endurance. Every week, he rised the time up to one Minute on each exercise. So by week 5, he was up to 5 minutes sitting up on the bench and five minutes on the bike. Eventually, he started physcial therapy and did it on Tuesdays and Thursdays only. Our physical therapist knew nothing about POTS but she was willing to learn. When he started physical therapy on these days, he did biking and siting on the bench the other 3 days only. In physical therapy, he did exercises that could be done on the floor and sitting up. It was a combination of exercises and his sessions lasted 30 minutes or less. Our physcial therapist was careful to montor blood pressures and heart rates. so she knew when to back off. When my son was able to do this exercise program, we all thought his body was starting to stablize and we had figure out what he needed to be able to function with POTS.

However this only last three months before his body went down totally after a double round of flu. After the double round of flu, he added more symptoms that caused his POTS condition to become worse. Eventually through testing, we found the cause and my son has been on a treatment program. After being on treatment for 18 months, my son is now able to start back on the exercise program I just shared with you. He is not able to stand or walk yet but he is gaining strength and stamina. He is having to relearn how to use musles because the autoimmune antibodies interfered with the brain and autonimic nervous system signaling.

Please find a doctor to help you figure out what's going with your daughter. I would encourge an exercise program if possible. Salt and extr fluids will help but you may want to back off of that before having a Tilt Table test done. My son has had 2 of these done. A local cardiologist confirmed his POTS and MAYO reconfirmed it 3 months later. Wishing you the best and hope you find some help soon for your daughter.

[sue.zee.q]

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?

[looneymom]

The Tilt Table Test will be looking for the change in the heart rate. My son's base heart rate was 104 and went all the way up to 154 at the end of 10 minutes. He almost passed out. His blood pressure dropped to 79/61 at the 8 minute mark.

If she can swim everyday or other day, that's great exercise for her to be able to do. Swimming will work her muscles and she is not having to fight against gravity to keep the muscles in shape.

A specialist will do more testing. The worse thing to do is to stop doing exercising. Some exercise is better than none, even if it is done every other day. From reading some research, I learned that a POTS patient should always try to exercise every other day and never take a break from exercise for more than 2 days. If a POTS patient does not start back doing exercise on the 3rd day, their body may start to lose what they have gained. I wish I could remember where I read this from but deconditoning seems to sneak back in quickly because the patient feels so bad. I

Just do your best to encourage her to swim every other day. I would encourage the swimming and wait for the testing until you know for sure what is going on. Swimming will work all of her muscles. However, the biking or walking upright will help keep the core and posture muscles strong. An exercise buddy might be helpful and provide the extra encouragment she needs. Stay strong mom and get her to a specialist asap.

[writerlymom]

Just wanted to offer encouragement...I didn't get POTS until my late 40s and have had some ups and downs but two years later am doing a good bit better than when I first became ill. It's my understanding that young people generally have the best prognosis. It can be very frightening and overwhelming but if I had any advice I'd say try to avoid the thinking paths that take you to the scariest places. There are lots of resources here and online to help you find the right care. (I saw a naturopath and for me it didn't result in any improvement but others have experienced different things. Good nutrition, rest, and activity as tolerable are always helpful!) Sending good thoughts.

[sue.zee.q]

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?

[Bigskyfam]

Dr satish raj is now in Calgary. He's the best of the best. I'm only 5 hours away. In the u.s, so I can't see him. Keep journaling researching and plugging along.

[sue.zee.q]

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.

[corina]

Dr Satish R Raj, is one of our medical advisors, you'll be in good hands! You can read more here:

http://www.dinet.org/index.php/about-us/advise

[looneymom]

My son has a daily persistance headache. At one time, it was a 9-10 pain level. He has tried the medication, your daughter has been on and many other medications for migraines. He did not get any relief either and sometimes they made his headache worse. The only medication that has given him some relief is Extended Release Namenda. This medication is not for treatment of headaches. However, there are research studies that is has been used to help treat headaches and chronic regional pain syndrome.

My's son's POTS is autoimmune related and neuropsychic medications made his headaches worse. Please be careful with these medications and starting with the lowest dosage is a smart way to figure out if it's going to make something worse. His doctor and I learned by trial and error very quickly. It sounds like you already know that your daugher is sensitive to medications. Start low and go slow with any medications if you find out that your daughter does have POTS.

If you can get your daughter in to see Dr. Raj, you will be in good hands. The quicker you can get your daughter to a specialist, the quicker you can rule out POTS. If she does have POTS, this doctor will be able to get her started on a good treatment plan.

[sue.zee.q]

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.