bkweavers

Thanks to both of you! Thought I had read research from them. Still trying to decide what to do. If we follow our current doctor, it would only be a 2 and a half hour drive. Right now, we drive one hour so not that bad. We'll see. Thankfully, my daughter hasn't had to see her POTS doctor very often. Now, if I could only find a decent endocrinologist! One who will listen! Anyone got a good one in Milwaukee, Wi area? Brenda

My daughter's POTS doctor is leaving & we're trying to decide if we want to follow him or try some of the other doctors at the hospital. Dr. Thomas Chelimsky is now at Froedert. Anyone have any experience with him? I see that he has adolescent & adult patients. My daughter is almost 16 & one of the things I really liked about her other POTS doctor is he was so good with her. He was also excellent at communicating with us & emailing me. Brenda

My daughter had two physical therapists who I also want to give credit to for their excellent help & support. They knew nothing about POTS and they educated themselves and read the articles I gave them to come up with a treatment plan for Liz. They were the ones who first mentioned that she may need vestibular therapy. Along with the two of them, the vestibular therapist she saw was wonderful. He got her sitting up, standing, and walking again. Brenda

I've been taking bio identical progesterone for about 6 months now. I was sick and tired of doctors telling me to stay on the birth control pilll so that my periods wouldn't come as often and therefore, I wouldn't have as many migraines. Well, that wasn't happening. My migraines increased from 2 a month to almost 18+ last August. I went off the pill and have felt much better. Since I don't have autnomic problems myself, it's hard for me to say if it would help you but I do wonder if the natural remedy vs. synthetic would be better for you. I agree with Issie that you should look into it even if your doctor isn't crazy about it. Brenda

Do you mind if I ask what grade you're in? We just got some info in the mail about ACT classes to get a student ready to take the test in the fall. My daughter is only taking 4 classes this year and only attends 1 of those at school each day plus homebound tutoring so trying to fit more school time into her schedule will not work right now. Did you wait till your senior year to take them? I don't want her to be behind but yet I don't want to push her anymore than she needs since she's finally starting to feel better again. Brenda

My daughter has also what I call a "crash" since October. However, she has crashed even further since x-mas and it's so hard. I feel for you! It's so difficult as a parent watching her struggle just to try and live every day. I know her doctor wants to try more meds but honestly, we tried dozens of meds for 3 years and very few actually did anything for her. Hilbiligirl- keep fighting! Easier said than done on some days but I just keep trying to encourage my daughter to not give in to this and that I (& many others) are diligently praying for her. Brenda

Naomi - do you have any symptoms of hypothyroid or hyperthryoid? Many people out there have "normal" test results and find out that they still feel miserable. I'm reading a lot of different books on thyroid and finding that doctors need to be treating to the symptoms and not just test results. The only problem is that a lot of symptoms of thyroid issues are also symptoms of dysautonomia! Brenda

Dani - it was like you were reading my mind recently! I'm the mom of a POTS kid so I don't suffer myself but I would take it from her in an instant if I could. She became ill at such an early age and was debilitated for so long. Then, she was almost back to normal for a year and now for the last 3 months, it's been a downward spiral! In some ways, this illness is more difficult than things like cancer. People understand cancer, know exactly what doctor to go to, have a plan of treatment and go from there. Obviously, cancer is life-threatening whereas this isn't but it's difficult in other ways. My daughter's body just seems to be turning against her. Once again, she's so dizzy that she can only sit up for 30 minutes at a time. Her headaches are bad as well as insomnia. She's 15 yrs. old and she shouldn't be hanging out at home all the time feeling miserable! My mother heart just can't take much more of this! I feel like once again, everyone else is living their lives and planning and we're sitting here waiting for the day she'll feel better. I get upset at people who complain about little things and feel like most people just have no idea what our family is going through.

I'm very frustrated! My daughter had a "crash" in October and really got bad after Thanksgiving.Went back to the doctor with her and he put her on new meds and changed her current ones. She was on Alprazolam ER for headaches, pindolol, and synthroid. He changed the Alprazolam to once a day and not extended release. The Pindolol was changed from 1 pill in am and 1/2 in pm to 1pill in am &1 in pm. At my request, I asked him to increase her thyroid from 125 mcg to 150 mcg. The week before x-mas, I called him cause her headaches were worse. Her dizziness had improved as well as her fatigue. He put her on Nortryptiline. She's been on it for a month and no change in pain. She has however, become more dizzy again! He increased the Nortryptiline again yesterday and today,her dizziness is even worse! Anyone else have dizziness as a side effect of Nortryptiline? Also, I'm wondering if we need to stop this med and go back to the original amounts before? Any advice? She really wants/needs to go back to school, even if it's only in the afternoons. Brenda

Many of the things that happened to RubyTuesday happened when my daughter was a patient of Dr. G's.I agree that he is an excellent doctor who really listens. We didn't mind having to wait for our appt.knowing that we were seeing a knowledgeable doctor. However, we always felt like my daughter saw him, she was given new meds, and we were off. We were left to fend for ourselves! My daughter's physical therapist tried by phone, fax, and letter to get some info from him andthey were never contacted! I understand when a doctor has a huge patient load,not to mention a sick wife but this is my daughter and if I can't get a hold of a doctor with questions & concerns, it just doesn't sit good with me. My daughter now sees someone only a hour away.He contacted my daughter's physical therapist and pediatrician the same week that we saw him to give them the info they needed. He gave me his email address the first appointment and he usually gets back to me the same day! He has office people and a nurse who are civil to me and are quick to get back to me as well. That means a lot to me! Brenda

She's seeing a neurologist. I haven't asked about migraine meds since others told me they won't give them to someone under the age of 18. She had headaches in the past she took xanax and that seemed to get rid of them. I have to email him again so I'll be asking him @ migraine meds. He's a very good doctor with a lot of knowledge @ autonomic issues but I know that doesn't always mean he knows about headaches. Not sure if we have a pediatric headache specialist in our area. We live 50 miles from Milwaukee,WI. Brenda

Wow! All of this is so interesting to me. My daughter was 10 when she started to have lots of ear issues. For the next 7 months, she had frequent problems with ear infections, sinus, and stuffiness, ears popping. She then got POTS. At the beginning of 2010, her symptoms were improving. She went through vestibular therapy to get her upright again and for 13 months, she was back to normal. Since October, she's had a POTS crash and now she's been complaining to me about her ears again. She's had so many migraines, even worse than a few years ago and I'm wondering if the headaches are more sinus-related. Guess I'm going to have her try something for allergies to see if that makes a difference. It's so frustrating to have many symptoms back again plus some that are worse than before the crash! Thanks for all the good info on here. Brenda

My daughter is having bad headaches again after not having hardly any for 2 years! It's so frustrating since the doctors won't give her a med like Imitrex, which is what I take to get rid of my migraines. @Ajw, how much magnesium do you take? I've just started giving her magnesium but not sure how much? Doctor now has her on an anti-depressant for prevention of headaches but after almost 2 weeks, I don't think it's helping at all. Why will doctors not give pain meds or abortive meds but give heavy-duty meds like anti-depressants? Brenda

Adaptive P.E. tends to be whatever is designated in your IEP so it's different for everyone. My daughter had to drop her gym class which was the first one she had taken since 5th grade. Do whatever you can when it comes to exercise but don't overdo it either. The school needs to know that there's a fine line for you in needing to exercise but not pushing your body too far. Christy-thank you so much for the info concerning your son getting credit for gym. We have a swimming pool and I'm going to talk to Liz's teacher concerning getting a credit for p.e. She was in physical therapy for over 3 years so I'm also going to check if it's possible to get any credit for that. My daughter is a little worried about not graduating on time and every credit helps! Brenda

Mostly, they are in the forehead but the pain can switch sides. It seems like they start with a small amt. of pain when she gets up and then her worst pain is later on in the day. I called the doctor a few days ago and he took her off of Provilgil and put her on noritryptiline(sp?). I've been on that before for my headaches and it didn't help but it's worth a try. I think she could go to school a little if it weren't for the headaches. Brenda

If you can, get the homebound teacher some info on your illness. Dynakids has some excellent info specifically for schools. She needs to get off her high horse and be a little more understanding. I'm really so sick and tired of hearing how students/kids are treated who become ill with autonomic illnesses! I'm sure if you had cancer, their would be no questions asked! Hang in there. Remember that your highest priority right now is getting better so take good care of yourself. My daughter's doctor told her to rest when she feels the need and to listen to her body. @Mully We don't have any experience at this point with online since this is the first time she's ended up homebound. I'll be checking that out once I decide if she can handle more. Right now, she's taking 4 classes at home so we'll see. Liz's teacher did send me an email for online classes. God bless, Brenda

My daughter is in an extreme flare. Due to her fatigue, her doctor put her on Provilgil. She's been on for 3 weeks now. First, she took a half a pill for 1 week, then 1 pill daily. When that didn't seem to help,we tried 2 pills which made her unable to sleep for longer than 6-7 hours and then she felt even worse! This week I tried 1 and 1/2pills and still it didn't seem to help. I'm ready to give up on this med. What other meds have you all tried for fatigue? Anything work for you? I'm also concerned cause her headaches seem to have worsened as well. She's on Pindolol, Xanax,and she just had her thyroid med increased from 125mcg to 150mcg. Of course being only 15 yrs. old, they won't let her take anything but ibuprofen or Tylenol. I hate seeing her in pain! Brenda

I should have my daughter talk with you guys. She's in the same boat with you right now. She first became ill in 07' and has always been in school,even if it was for a few hours. Last year, she was in almost full time and feeling great.She began this year full time until Oct. when she became extremely fatigued, dizzy, and bad headaches. She just started homebound this week. Her doctor is hopeful that she won't be down for long. I'm just hoping that we can get some of her symptoms dealt with so she can at least go back part-time. Another option we may check in to is online classes. She really wants to graduate on time but I guess that will depend on what happens in the next few months. Hang in there! Brenda

I am so sorry to hear about the trouble your school is giving you. You certainly don't need the extra stress! My daughter has been in special education since she became ill. Your parents may have a fight coming and they need to educate your school as to what POTS is like. You may look healthy to them, but feel completely miserable. I agree with Dakota to go to on dynakids.org. They have so much good information on there to help people understand your illness. If your principal is on your side, I would tell him about the social worker and the nasty email. It's the principal's job to deal with his staff! Try not to worry about your grades. I know it's easier said than done but you need to concentrate on your health and taking good care of yourself. You also need to try and stay connected with friends. It's so important at your age to stay socially connected. Good luck and God bless! Brenda

If you are hypothyroid, what kind of doctor are you seeing? I don't know if the reason my 15 yr. old daughter is so tired and dizzy is due to her thyroid or not but I'm trying to investigate this myself. Out of nowhere she crashed after having 15 months of being healthy and no POTS symptoms.For over 2 years, she hasn't had the usual POTS crash in the fall or feeling worse due to menstrual cycle or weather. She was slowly getting better. I question her lab results in regards to her thyroid because it's been over 3 years since she's had an increase in them. I'm reading that what is normal for some people may not be "normal" for others. She feels awful and I've never seen such fatigue in her! Even when she first became sick with POTS, she never slept this much! I'm getting no help from her doctor who just keeps saying to me that her levels are normal. So, I'm wondering about a new doctor for her who will not just look at test results but also symptoms. I'm also reading that good doctors test the Free T4 and Free T3. What dosing are you on? What do you take? How often do you get checked? Do you know if other medications and/or illness can change lab results? Her results since being sick have been all over the place. Besides being tired, she has headaches, trouble sleeping, dry skin, no energy, little to no appetite, thinning eyebrows. One other thing I want to mention is that when she was 18 months old, she had normal labs and yet she had fatigue and constipation. I kept bugging the doctors for a few months and finally, they increased her meds and she was better! That keeps nagging at me! I would appreciate any info you can give me on your past experience with hypothyroidism. I'm desperate to have my daughter feel even a little bit better. Brenda

I believe it was the T4 that was high. It was 1.55 which was above the labs "normal" range. I wish right now that she still had the other doctor because he was so knowledgeable about this. March of 2008 was the last time that we tried increasing her medication. At that time, her doctor said she was right on the borderline. We tried more meds and it was too much. But that was 3 and a half years ago! She has grown since that time. Sue-I agree with what you said about her results having more meaning due to the congenital hypothyroidism. I want one of her doctors to really take me seriously cause this kid is miserable. Someone close to us commented that she looks like she has gained weight. When I started to think about it, all last summer she exercised like crazy, ate healthy foods, and she still seemed to gain weight. This is frustrating me! I think tomorrow I'm going to get all her past records of blood draws and do my own investigating into this. I'm also going to push her current endo doctor to take a better look at this along with getting her POTS doctor involved. My motherly intuition just says that something is fishy about this. She was so tired again today that she slept 12 hours, woke up tired and dizzy and took a nap as well. Even at her worst days with this, she was never this tired. Brenda

So, my daughter has been sooo tired. More tired than she has ever been since getting POTS. For the last 2 years, all she did was improve! She had no changes with the weather or menstrual cycle. She was getting out more as the headaches, dizziness, and insomnia improved. Five weeks ago out of nowhere, it hit! Extreme fatigue. I've never seen her this tired. She has congenital hypothyroidism and here's where I'm questioning her doctors. Her former endo used to always test TSH. Free T4, T4 and T3. The doctor now told me they never test for anything other than TSH and T4. That bothered me so I took Liz to her pediatrician and asked for the other tests to be run. He gave me the numbers and said they are within normal range. I'm not happy with his explanation since one of her levels was very high. He also ran a CBC on her and test for mono, all of which came back negative. After reading on here that some people feel "Potsy" when their thyroid levels are off, I'm wondering if some of her fatigue is due to the thyroid. She hasn't had her meds increased in 4 years and she's grown since that time. Her symptoms are fatigue, more frequent headaches. Can anyone give me any insight into this? I don't know as much about the endocrine system as I should since all my energy for the past 4 and 1/2 yrs. has been on researching POTS. What would you do? I'm ready to take her to another endo with a more open mind to really look into this. Thank you! Brenda

Julie - Love, love, love the joke! The sad thing is that it's so true! Ginger-Hope you find the right doctor. It makes all the difference in the world. You need someone knowledgeable and who will actually listen to you. Remember that you know your child better than anyone. The doctor(s) only see a person for a short time. My daughter has had her share of bad doctors but thankfully, great ones too. It just took some time to find the right ones. I hope you find some answers. I know what it's like to have a sick child. The uncertainty and out of control feelings can drive you crazy. God bless, Brenda

Congratulations on the new baby and on surviving all of that! You are a super woman! You've been through so much and I admire you for that. I was on bedrest for 5 months at home but don't have autonomic issues and that was hard enough. I know you need to recondition yourself but I think you should also keep in mind all that your body has been through. I would take it easy on yourself and work yourself very slowly. You don't want to overdo it right now with having to take care of a baby and a 3 yr. old. That's exhausting for anyone! I would think getting in water would be good for you or a stationary bike. Good luck and God bless you and your family! Brenda

Thank you for what you said. It's been very difficult watching my teenage daughter struggle once again to just try to get through each day. She had been feeling so good and was finally living an almost normal life. POTS rears its ugly head once again and I find myself getting very angry at people again for the stupid things that upset them. My best friend is even making me angry with her "woe is me" talk because they can't sell their home. I would much rather have her problem instead of a sick child. I am a Christian and believe that God has a purpose but boy, some days it's a huge struggle to understand why my daughter should have to suffer this long. If I could, I would take it from her so she could be a normal teenager! It is so incredibly hard to sometimes look one the bright side of things and be thankful but I'm trying. Brenda