bkweavers

Hello, I went to a new massage therapist this past week. After talking briefly about my neck and back issues and migraines, she asked if I had ever had cranio sacral therapy. I said no but said I was interested in it. She said she was going to try some movements during the massage. (I did not tell her that I have IST and possible Pots.) I had the massage and felt great for the next day and a half. Two days after, I started my day but ended up with a dizzy spell and then was dizzy for 3-4 hours and no appetite. More lightheaded ness and dizziness the next day and now again today, my head feels funny and feels like it’s ready to be dizzy. Anyone else have this happen after cranio sacral therapy? I do wonder if the dizziness is due to extreme hot weather that started 2 days ago but we’ve had frequent times of hot weather this summer and I wasn’t dizzy on those days. Brenda

My husband was let go of his job in October. He had been there for over 29 years and we had been on the same insurance that entire time. Thankfully, he got a new job but we had to move to the Madison area. With new insurance, I now have to give up my neurologist for Botox treatment for migraines and my cardiologist. (She actually left the area I had been living in so I would've been searching for a new doctor anyways.) I have Inappropriate Sinus Tachycardia and Chronic fatigue syndrome. I'm looking for a neurologist as well as a doctor who can treat me for my autonomic illness. I also had a doctor who treated my CFS but not sure yet if I can continue to see him or not. Anyone in the Madison, Wisconsin area with any recommendations? Thanks and it's been a long time since I've been on here so it's nice to be back! Brenda

You can try the chiropractor but honestly, it never helped my daughter's dizziness/vertigo. She had POTS and the dizziness was daily.( I don't say that to scare you because it may not be the case for your son. )Before her diagnosis of POTS, she was checked out by an ENT and the dizziness was not due to vestibular or inner ear. It was and is a symptom of POTS. Does he have other symptoms besides the dizziness? Brenda

I'm with Bombsh3ll! My daughter had POTS for close to 8 years starting at the age of 11yrs. She wasn't upright for 3 and a half years and was so miserable from her many symptoms. Relatives close to her saw all that she went through and yet, they were the ones who we ended up fighting with because they just didn't understand the limits of this illness! Our relationship with them has never really been the same. I've learned that those who really "get it" and offer continued support are the ones who I value and keep close. Now, that I've been diagnosed with IST, I don't even try to explain or talk about my health issues with those family members. I don't think it's even worth my time and energy as they will never really understand. They certainly never ask me how I feel. I just think some people can't handle a long term illness. They are just not strong enough for it.

Thank you for the information ladies! I have an appointment with a neurologist but not until April 2nd.

I'll try to make this as short as possible. I've been a member of Dinet for many years because of my daughter having POTS. Thankfully, she's doing beautifully but me on the other hand, not so much. I've been diagnosed with CFS, hypothyroidism, RLS, and migraines. I also suffer from neck and back pain. The migraines and RLS started in my early 30s. Last year, I was experiencing frequent tachycardia, more fatigue, and a feeling like an anxiety attack with heat intolerance and lightheaded.ness. After testing, the cardiologist diagnosed me with Inappropriate sinus tachycardia. She said she couldn't quite make a diagnosis of mitral valve prolapse as I didn't quite meet criteria but she wants me to come back this coming year for another echocardiogram. She put me on metopropolol which has helped for the most part. For awhile, my chronic migraines were improving. I was actually going for a week or longer without one. At the end of September, things changed. I started to get more migraines and more neck pain especially in the occipital area. The pain starts in my neck, sometimes in my shoulder and many times, works it's way into a full blown migraine. I now have gone maybe a day here and there without a headache. Most of the time, I wake up with a very stiff neck and a headache. I've tried many different pillows, went back to the chiropractor, and tried dry needling. I've been having to take sumatriptan to get rid of most of these headaches which in turn, makes me so exhausted and brings on other symptoms like nausea and lightheadedness. I'm beginning to get very down about this. Even working only 20 hours a week is hard. I seem to also have more brain fog. Yesterday, I called my primary to get a referral for a neurologist. (I live an hour north of Milwaukee.) I really wanted to go to see Dr. Dotson at Aurora Grafton but I was told she's booking out until September. (Doesn't surprise me as I went down this road with my daughter.) My question is this: do you think I'm headed in the right direction seeing a neurologist? I wish I could see Dr. Dotson as she is a dysautonomia specialist. The neurologist I'm looking at does have experience with neck issues. Also, do any of my symptoms sound like Ehler's or Chiari? I don't know if the neck/back pain is from the migraines or the other way around? Both seem to feed off of the other. Any thoughts or advice are welcome. I'm really glad I can reach out to all of you. I feel very alone in all of this. I have a wonderful husband but he's super healthy and has no idea what it's like to deal with pain and fatigue day and after day. Brenda

My daughter also had daily headaches for the first 9 months after being diagnosed with POTS. They didn't present exactly like your daughter's but what finally helped for her was extended release alprazolam or Xanax. I think my biggest piece of advice is to find a dysautonomia specialist for your daughter. I understand if money is a reason for not being able to pursue a specialist but if you're able to , it is well worth it to have a knowledgeable doctor who can help her, even if it's a doctor who doesn't normally see adolescents. We drove from Wisconsin to Ohio for a few years until we found someone closer to us but it was worth it. If you do keep the doctor you have, give him or her as much information as you can on POTS and her other conditions and hopefully, the doctor is willing to learn and listen. I know it's awful to watch your child suffer. I can tell you that it took time, but we did find medications that worked and in the end, my daughter did get better. My prayers are with you and your daughter. Brenda

-My heart goes out to you and your daughter. At the age of 10, my daughter was diagnosed with POTS so as a mother, I know some of what you're going through. She is now almost 21 and is almost symptom free so there is hope. (That sounds like a long time doesn't it? She started to feel much better around age 15) It sounds like you're on the right path to getting an official diagnosis. I hope that your upcoming appointment with the cardiologist is positive. We met a number of doctors along our journey that claimed to know POTS but didn't so my advice to you is, if you're not happy with this doctor, find one who is knowledgeable and truly knows about POTS. Some other things that we learned along the way: -communicate/connect with the special education program at her school and talk to them about either a 504 plan or putting her completely in special education. She's going to need to have some accommodations to her work load at school. -keep her connected to her friends as much as possible. Every doctor we went to always pointed this out and asked about her social life. We had friends over to our house as much as possible. -for you as her caregiver, take care of yourself as best you can. Get out when possible, even if it's a quick cup of coffee with a friend. It's exhausting, stressful, and emotional to say the least! Please feel free to message me with any other questions. An adolescent with autonomic disorder is very different from an adult with the same disorder. With puberty thrown into the mix, it's a whole different ballgame. My thoughts and prayers go out to you and your daughter, Brenda

Thanks to both of you! You pretty much confirmed everything I was thinking but because my daughter had both blood pressure and heart rate changes during her tilt table, I was a little uncertain. I'm also concerned that the doctor she has doesn't have a lot of experience with POTS, even though he claims to know about it. I had already told her from our experience, that she might need to seek out a doctor who has lots of experience with autonomic disorders and not just one who knows a little something about it. I'm really hoping she will take my advice and seek how a better doctor. Thanks again, Brenda

Hi everyone, I have a friend who recently went to a cardiologist for symptoms that have been going on since childhood. She just always had lived with it but recently, her symptoms had worsened so she decided to finally get it checked out. After talking with him, he really was convinced that she has POTS. She had a tilt table test done and due to the fact that her blood pressure didn't fluctuate enough, he now says she doesn't have POTS. My daughter has POTS and she never had large fluctuations of bp either. My question is: Is there anyone on here who passed the tilt table test but went on to find out that they did have POTS or dysautonomia? My friend's doctor was very surprised by the results as he was very positive that it was POTS. Thank you! Brenda

My daughter was dizzy beginning when she woke up on March 13, 2007 until approximately 3 and a half years later when it began to clear-slowly. It was 24/7. She also described it as she was spinning. At times, it would be better when lying down but other times, it would get so bad that she would hang on to the sofa because she felt like she was going to fall off. Her dizziness got even worse when her periods became worse and happened twice a month. So, I understand some of what you're experiencing with your daughters. I don't like to tell you this but for my daughter, we never found a medication that helped the dizziness, although every adolescent is different and what doesn't work for one, can work for another.The dizziness slowly dissipated over time. For many years, she would still get dizzy with weather changes, hormonal or illness. Because she was unable to sit up, stand, or walk for so long, she did go through vestibular therapy. She had to relearn how to walk, sit, and stand. If you have any questions for me, message me. I would gladly talk to you or answer any questions. Take care, Brenda

It's been almost 8 and 1/2 years since my daughter became ill with POTS at the age of 11. In the first couple of years, I was constantly on this forum. I can't imagine what I would've done without the help, advice, and support I received. Once in awhile, someone would post an update about their child with dysautonomia and how much better they were doing or how they were attending college. These posts would give me such hope for her future. Now, I'm happy to report how well my 19 yr. old daughter is doing! For 3 and a half years, she was so dizzy that she could not even be upright - sit, walk, or stand. After that time, she had to learn how to walk again! After a year of feeling good, she ended up relapsing. She slowly improved and this past year has been her best year yet!The majority of her symptoms -dizziness, headaches, insomnia, brain fog, are completely gone. She is in her second year of college and though she is taking a small load, she is able to handle it. She still is on meds and does still need more sleep than the average person but she is finally enjoying the life of a teenager. She's done things I never thought would be possible- rock climbing, riding roller coasters, water skiing, and traveling. I know that not everyone's story will turn out the way my daughter's has and I'm sorry for that. But, I hope that this will help someone. I pray for all of those living with this illness and fighting every day! My daughter is my hero for the way that she's handled herself. She could be angry at the time she lost. She could play the victim but she hasn't. In fact, people always marvel at her positive outlook on life. Take care, Brenda

You have many of the symptoms of autonomic illness but you really need to rule out other things before you would assume it is POTS or another dysautonomia illness. I hate to say it but for us, my daughter had to go to an ENT and have other tests done to rule out other illnesses. If you can get your doctor to refer you to a POTS specialist, I would highly recommend Dr. Barboi at Rush Hospital in Chicago. He used to be my daughter's doctor before moving. I can't say enough positive things about him. He's very knowledgeable about dysautonomia. I can't say the name of the other doctor from Chicago that we've seen since we're not supposed to elaborate on a negative doctors experience on here but message me if you would like to know who it is. I hope this info helps! Brenda

Thank you for all the great suggestions/help so far! I don't know if she'll be able to do criminal justice completely online but we'll see. I'm not sure if being a police officer will even be doable unless she gets better in the next few years anyway. Anyone else out there have more stories or helpful suggestions on doing college?

My daughter is a senior in high school and is looking into local colleges and living at home. Her POTS is way better than a few years ago but winter seems to always be the worst with her either getting sick and then Potsy symptoms with it or just dizziness and fatigue for no reason. Then of course, she misses school and it's difficult to make up all the work. My husband and I are concerned if she'll be able to handle college full-time. First of all, what did you do to make the college aware of your illness? What accommodations were you able to get? Any info you can give us, would be so appreciated! I would also love to hear any success stories of college. It sure would give us hope. Thanks, Brenda

My daughter has POTS and had her wisdom teeth out about a month ago. Her doctor was very good about contacting her POTS specialist as well as reassuring us that they would monitor her during and after the procedure. We also talked to the POTS doctor to see if there was anything that we needed to do. The procedure took only 40 minutes and she hardly had any symptoms. Usually, she would have gotten very dizzy but that didn't happen this time so we were very happy about that. The pain and soreness took awhile to dissipate and she was very fatigued for 5 days. Overall, everything that I was worried about never happened and it went way better than I had expected. I wouldn't put it off any longer or you could end up with other complications. Good luck and try not to worry and just prepare as much as you can ahead of time! Brenda

I just responded to another post about thryoid issues and my advice is to keep fighting! I'm taking my daughter to another endo since I can't seem to find a good one! (We had a good one who moved.) I don't know what it is about endos but they don't listen to symptoms they just concentrate on blood test results! So frustrating! I agree that the TSH is a worthless test and make sure they are always doing Free T3 and Free T4. It sure seems like there are a lot of people with autonomic and thyroid illness! Good luck! Brenda

@future hope, if you've had problems with your adrenals, you also should be treated for those. I would strongly suggest getting the book, Stop the thyroid madness and look into things. You don't need to go to an endo to be treated. I'm going to a medical doctor, an internist, who strongly believes in a lot of what this book says. I found out my adrenals were off along with my thryoid. It could be the reason that you're still not feeling good. Brenda

I am also on the Stop the thyroid madness website and I have her book. To all of you with thyroid issues, don't stop fighting for your right to feel better! From my experience with my daughter's endocrinologists and what I've read, there are so many doctors who aren't listening to their patients, only looking at blood test results, and not looking at their symptoms. Just last year, my daughter relapsed completely with her POTS. She had just been to the endocrinologist and her levels were shown to be normal. She was sleeping 16+ hrs. every night but still was exhausted. I had a huge argument over the phone with the endo who refused to even listen. All she kept saying was, "her blood levels are normal." Finally I asked my daughter's POTS doctor to let us try a higher dose. Looking back now, I'm convinced her relapse or crash was due to not enough thyroid med. I was just looking at her picture of before the increase and after. The "before" pic shows a fatter face, thinner hair, and very thin eyebrows. The "after" pic shows a thinner face, thicker eyebrows, and thick hair! I've found since this time that blood test results can be off if a person has an illness also. I've also learned that you need to be treated according to symptoms and that many people out there don't even go to endos but a doctor who is willing to listen and learn. Also, many people can't tolerate synthetic thyroid medication and so go on natural thyroid like Armour. There are many other kinds of natural thyroid out there and many people feel much better on them. I'm on Armour thryoid myself. The frustrating thing about having autonomic illness and thryoid is that the symptoms are so much the same. Right now, my daughter is having problems with insomnia so I'm beginning to wonder if maybe we need to decrease her thyroid med just a little. But, then again it could be the POTS..... Brenda

Still confused if it's worth it for her! What some of you said about being unable to sleep while the study is going on was one of the reasons I wonder if it's worth it! When she first became sick, insomnia was one of her worst symptoms but that had improved up until last fall. She did have an increase in her thyroid medication last year and so I think we're going to look into that first before we go ahead with the sleep study. This is sometimes the frustrating thing to me about doctors. They really don't know what to do so they just throw more tests at you. I've learned to do my research now before saying yes to everything. Thanks for the info, Brenda

My teenage daughter is still having bad insomnia. For her, it's that she can't fall asleep. Once she does fall asleep, she sleeps fairly well. She's been on trazodone for about 6 weeks now and is now at the point where the dosage can't be increased. We've already tried melatonin and Benadryl which stopped working. I called the doctor again today and now she wants a sleep study for her. She's never had one in the 6 years of POTS. I have a few questions for those of you who've had one done. What do they do during it? Is it considered outpatinet or in? Was it worth it to you? What do they find out from it? I'm just not sure that I'm willing to spend the time and money on this especially since it may not show anything. I also want to get her thyroid checked again since insomnia can be a symptom of hyperthyroid. (She has congenital hypothyroidism.) She also is getting her wisdom teeth taken out next week so I don't want to schedule it yet and I'm hoping to do my homework on this before I decide. Any other info you can provide would be helpful. Thanks! Brenda

Issie, did you try bio-identical hormones? Many women do better on them than the synthetic ones. Brenda

I was on birth control for years mostly due to the fact that my doctor thought it would help with my frequent migraines. My worst migraines were with my period so it made sense to me. Over the years, my migraines increased until I was at 18+ a month. I was beginning to not believe them and went off of birth control. Over the next 6 months, my migraines decreased by 50% and the ones I did get were much less intense. Right now, I've been bleeding for over 3 months and I've been seeing a doctor who believes in natural thyroid medication and bio-identical hormones. He was irate when he heard I had been on birth control for so many years! I'm beginning to think that my problems I'm having now is due to being on birth control for too long. I'm in my 40's and I now wish I hadn't used them so much. Obviously, I can't prove this but I'm amazed at how many people I know who are having issues with their periods and end up with a hysterectomy at an early age! I'm not telling you not to use birth control but just telling you my story to get you thinking about this. I think too many doctors are putting women on birth control way too easily. I know there are definitely very good reasons for being on it but I just want to caution you so you don't end up with additional problems later on like I have! Brenda

@ I hate bananas, off the subject but I love your quotes and your picture that comes up when you post! Made me smile! I don't want to by any means compare my pregnancy bedrest to those of you with this illness but while on bedrest, I tried to put together a sort of schedule for myself and try to accomplish whatever I could. I had my hobbies. I learned to crochet and knit. Wish I would've kept that one up! There are so many cool things you can make and you can always give them away too. When my daughter was at her worst, I tried also to keep her busy with games, movies, books and thank God she could go on her own computer and stay connected with her friends. Can you get out at all and hang out with friends or family? I know that always lifted my daughter's spirits. My heart goes out to you and hopefully, it will be a early spring! Brenda

When I checked him out on the Medical college of Wisconsin website, it said that one of his specialties was autonomic disorders so I guess that's why I thought he was the new doctor that just started a week ago. Hope it goes well. I know how long it took us to find the right doctor. We actually ended up right where we had started - at Froedert! I still miss Dr. Barboi but hope and pray that people in the Chicago area are reaping the benefits of his knowledge and expertise! Brenda