paona

If you are using one of the centrally acting alpha-agonist hypotensive agent like guanfacine or clonidine it's very important to consult a pharmacist about the interactions of the 2 meds but also consult with a specialist that understands about those that have high norepinephrine levels to start with. I agree that this situation needs to be under the guidance of a professional because I think potentially it could be very unsafe if not monitored.

I believe the anxiety thing is a copout go-to-response for some doctors. My daughter's doctor brought it up in response to hearing about her heart racing, which was documented in a holter monitor test and the poor man's tilt table response test but she wasn't diagnosed at the time. When she was 16 she was diagnosed at the Mayo Clinic with POTS and this doctor when presented with the same information from me, said within 5 minutes I think this is POTS. He then ordered further testing which confirmed it. My daughter did not have any anxiety at the time. I was in the hospital over a year ago with the flu, blood pressure in the 200's especially when upright, and issues being upright with feeling like passing out. The doctor thought a referral to a psychiatrist was in order. I actually laughed and said, um, why? She felt these symptoms were anxiety. I said I would pass on the referral since I wasn't anxious. I said I think my increased symptoms were related to having the flu. The nurses did not feel I was anxious. Actually I was and remain extremely ill and do very well mentally at remaining focussed to push through my symptoms, and breathe mindfully through them. I was diagnosed at the Rochester Mayo this past November with hyperadregenic issues and autonomic storms. My norepinephrine levels were somewhat elevated when resting and significantly rose when upright. So I have autonomic issues but not POTS. Also keep a diary. My daughter is in her early 20's now and chose to not use medication anymore for her POTS. Unfortunately that wasn't a great decision and finally things got out of hand. When she went back to her primary doctor he would not consider reinstating meds for POTS because she wasn't presenting in his office, the poor man's tilt table test didn't show it. I had her keep a diary and find a new doctor. He believed her and put her back on betablockers and she is making good progress again. Also my daughter had extremely low blood pressure as a teen but now doesn't have the low blood pressure as much but still the tachycardia when upright. I think the picture of what is going on can change around. Austin or Houston should have doctors or centers that specialize in dysautonomia. You might just need some tweaking of your meds. I'm still in that process and like you I have bradycardia in my sleep or when lying flat. I find that if my heart rate makes this plunge I stand holding something and march my legs to increase my heart rate a little until I can safely attempt some other form of exercise to raise my heart rate. For me 15 minutes on my stationary bike gets my heart rate back into the 60's or higher and then it remains for several hours. I also take my blood pressure before doing meds and if my heart rate is too suppressed I have it set up with my doctor to take a partial dose to keep the blood pressure down some but not suppress my heart rate too much. Beta blockers can certainly suppress heart rate to a point of bradycardia. I am on a beta blocker but also another blood pressure med to suppress the norepinephrine. You really need a specialist that deals with dysautonomia to help you sort this out since you are already on meds. Going to the Mayo might be worth it to get things sorted out.

Agree about starting the florinef first since it should bring up the blood pressure some and this will be needed before starting the beta blocker. My daughter is 17 and also had blood pressure even lower than yours. Her blood pressure still runs very low even with the florinef but the florinef helped her be able to tolerate lower doses of her beta blocker and the combination has greatly reduced her symptoms of POTS.

Did they do his heart rate lying down, then sitting, then standing? My daughter had her first ECG at age 7 years because she told us her heart was beating so fast and along with this she had nausea and looked very pale. Her ECG was normal lying down and we didn't know to have it tested while she was standing for a bit. We figured she had a rather benign inherited tachycardia that some family members had. We didn't do any further testing but had I known about POTS I would have. She did not receive holter monitor testing until age 15 and it did show tachycardia but nothing more was done. When she was younger we thought the feeling of chest tightening and pain was a form of asthma from seasonal allergies and treating her with homeopathic remedies seemed to help but now we feel that most of her reported symptoms back then were from POTS. She did not get diagnosed with POTS until last May at the Mayo at age 16. She has times when she will report feeling like her heart is racing but when her pulse is taken it is normal. She can sometimes be lying down, sit-up and stand-up in the doctor's office and her heart rate is normal but she feels terrible. Other times she will have a blood pressure of 80/40 and a heart rate in the upper 40's while sitting and feel fine. She has had testing though with the heart rate increasing from 35-50 points going from lying down to standing. I guess what I'm trying to say is there can be fluctuation with blood pressure and heart rate and sometimes you have to keep taking readings to catch it. At age 17 her blood pressure now remains very low most of the time and when she is fighting an allergic reaction or virus it worsens. I think what really made us take notice in more recent years was how this really gutsy kid was telling us how she was frightened by the chest pain (not uncommon with POTS). We lucked out when she was sick at home and happened to be watching a taping of the House TV show and they mentioned low blood pressure and tachycardia and I asked her what condition the patient had. They were checking the patient for POTS. I immediately looked up POTS on the Mayo website and realized there was a good chance that she had this going on. All these symptoms we had separately treated were mentioned. We also got a good blood pressure cuff to take readings when she reported chest pain or the feeling of tachycardia. Sometimes it showed significant changes, sometimes it didn't but we had enough to show the Mayo when we got in 6 months later. Having a blood pressure monitor at home can help you see what their average heart rate is and how much it deviates from that. Since my daughter's heart rate was fairly low to begin with by the time it was in the 100's she could really feel the difference. The dinet site has excellent information to help you sort through this. You might want to google Dr. Fischer and POTS since he is a pediatric specialist in that area (Rochester Mayo) and has lots of usedful information about children and POTS.

I'm putting a link to a site about Irlen Syndrome: http://irlen.com/index.php Like your daughter, my daughter has had very weird visual distortions. I know she had weird auras (from migraines without pain) since at least age 4. She had terrible visual perceptual issues from a young age and we did visual therapy to try and help this and help with her conversion issues. The therapy helped some but her light sensitivity kept increasing and I ended up homeschooling her through the middle school years because of her numerous perceptual issues. She still was very advanced in school but struggled to keep up with visual and fine motor tasks. When we were homeschooling I got the chance to observe her closely and about the second year she started to describe in more detail the weird visual distortions. I googled what she was describing and also put in the key word red lenses. That brought me to the site about Irlen Syndrome. We looked at the site together and she pointed out the examples that were similar to how she perceived writing. I called her optometrist and asked him about Irlen Syndrome and he looked into it and felt I was on the right track in having her screened for this. Fortunately the one screener in our state lived nearby She was screened and we noticed immediately the change when she had her try looking through large lenses, sometimes several put together coming up with quite a color combination for her to look through. We ordered lenses to be put into frames we had and the colored lenses (not red but the spectrum she needed) worked beautifully for her. The distortions left, her eyes began to do conversion work without the therapy and she could go outside and be in light without the migraines. . While my daughter had symptoms of POTS since age 7 she was not diagnosed until age 16. My daughter had been through several changes of colored lenses and then she didn't need them for awhile. As her POTS worsened then the light sensitivity, migraines and visual distortions came back. For her medications for POTS also settled down the migraines and visual distortions. Looking back I think her issues with the pupils not constricting correctly and being sensitive to light contributed to the visual distortions. I do not know if Irlen lenses would work for others that don't have some of the classic symptoms but I do know of some people that have used them for chronic migraine activity and got relief. I just wanted to pass this information on with the hopes that it might be of help to someone else experiencing light sensitivity and visual distortions. Oh, and her brain MRI was normal.

Just add on the new diagnoses. You don't have to address what you were initially given the disability for just say the symptoms remain and include the new diagnoses. I think if you are very detailed they might not even contact your doctors. If you are seeing someone separate for infertility I wouldn't even list that doctor. If for some reason that becomes an issue you might need to document the supports that would be in place to allow you to parent and how the daily routines at home might be managed but not the demands and structure of work. It probably won't be an issue. If you feel comfortable with your doctor you might want to explain that this review has come up and concerns about including records about fertility treatments.

Timely discussion since my 17 year old is home today and probably tomorrow because of increased sensitivity to light/sound, auras, a bit nauseous, and an ongoing dull headache. She had migraines that we know of since age 4. These were usually painless, accompanied by vomiting, and auras. At that time we could usually trace the reaction to a higher naturally occurring high salicylate food. When she went dye/preservative free and low salicylate she had fewer migraines. We also think she started having POTS symptoms around age 7 and then the migraines increased again. She wore Irlen lenses (colored lenses) and her visual perceptual issues and migraines were not frequent if she wore the lenses all the time. When POTS symptoms started escalating again in high school the migraines increased. LIke your daughter my daughter has very low blood pressure. She takes fludrocort to help increase the pressure but many of her POTS symptoms including migraine activity went away with adding a beta blocker to her already drinking 12 cups a water/day, lots of salt, and exercising 1/2 hour daily/ 6 days a week. We have no idea what set off the migraine activity this time but her blood pressure is 99/54 while sitting and her heart rate is at 54. I had her increase her fludrocort by 1/2 a tablet today since she usually only take 1/2 tab. She rarely is out of school but knew that being in a quiet, dimly lit room was needed. She told me today that having such wild visual disturbances has probably added to her descriptive writing in her stories. This time of year pollen levels set off migraines for some people. My daughter treats her allergies with homeopathic remedies and zyrtec at night. She does notice that taking her homeopathic remedies help lessen the migraine. Also she takes ibuprophen when the auras start even if she doesn't have pain. I saw the mention of increasing electrolytes and just reminded her to put some packets of her Electro-Mix into her water. It can be challenging to sort out just the migraines, let alone the other things going on in the body. Migraines can have many triggers but from reading on here it sounds like they are common with POTS. I get migraines with hormone changes, and neck issues. My oldest daughter had similar triggers to her migraines.

Doozlygirl, Sorry you have these sensitivities/allergies as well to salicylates. Being sensitive/allerigic to dyes and preservatives is a challenge but being off them would probably be beneficial to most people. There is more pressure being put on the FDA to consider the studies done on the risk of dyes to all children but especially those with compromised systems. I think it was about a year ago that the FDA finally agreed to hear from scientists and parents about the mounting evidence of concern about food dyes. Very interesting how the major food companies in the United States make one product for the U.S. and another without our dyes for most of the European and some of the Asian countries since they have deemed our dyes to be toxic to children. We also get a newsletter online when we joined the Feingold association so it keeps us abreast to a variety of information concerning health issues and connections to nutrition. The information we got from Feingold did not list peppermint or spearmint as a concern for those sensitive to salicylates, only the oil of wintergreen. My daughter drinks Celestial Seasonings peppermint and chamomile teas. She has also had a chai tea which I think is a higher salicylate but I don't know which brand. The GAPS diet is one of the most restrictive elimination diets often used by families with children in the autism spectrum. The diet comes from a book called, "Gut and Psychology Syndrome". It wasn't too difficult for us to go this next stage as our daughter was already following the Feingold way of eating (no dyes/preservatives, low salicylates). The natural doctor we saw suggested trying this because this book addresses the salicylate sensitivity in some people and often with healing the gut some foods can be reintroduced. He said he often saw gluten as a culprit. I don't know if eliminating that helped my daughter or not. From age 7 to 15 she was on lower salicylate foods so maybe she outgrew some of this sensitivity but it seemed like doing the GAPS diet maybe it easier to pinpoint when something was bothering her system. She had not been diagnosed or treated for her POTS before we did this diet and had reintroduced previously bothersome foods for her. While she no longer seemed as sensitive to many foods she still had severe ostipation. That did not improve until she started the beta blocker and now 9 months later she is pretty much off her twice daily laxative and finds plain yogurt is enough to aide digestion. I guess her peers and their parents find the way she eats to be unusual but basically she eats whole foods, a meat, vegetable, and fruit at most meals, very plain at times but we do vary it with some prepackaged natural products. She can't eat out most places, and if she goes to camp or out of state with her school I precook and freeze everything so she can still take part in things. She brings her own food to her friend's houses but now in high school her friends and their parents try to find out what she can eat and sometimes fix things for her. She is also finding more families that eat very naturally and healthy and want to provide meals for her when she visits. Also wanted to mention that some online lists of salicylate levels can vary so it really is an individual trial on some things. When younger my daughter could eat small levels of frozen pineapple which is considered a lower salicylate but the fresh pineapple brought on memory loss and defiance.

My 17 year old with POTS is on the Feingold diet which is an elimination diet with 2 stages. She is allergic to dyes and preservatives, and had great difficulty with medium and higher salicylate foods until more recently. Her first very noticeable reaction came at 18 months of age. She was a colicky baby but with continuous tweaking of her diet she did okay. The reaction at 18 months was probably due to a preservative and she had hives the length of her calves which were followed by dime-size hives covering her body. For her higher salicylate foods gave her migraines, icky behavior, and vomiting. We joined the Feingold program to receive a book that lists products from companies that had submitted their list of ingredients to the organization. Stage one is low salicylate foods and products which my daughter was on from age 7 until a year ago. When my daughter was 15 we tried the GAPS elimination diet and she went gluten and casein free for about half a year and then we reintroduced medium to higher salicylate foods. She was able to handle smaller amounts of them and had few issues except for apples. She eats organic fruits if they don't have a tough skin like a grapefruit. We reintroduced casein after about a year and she continued to do well. She has been off gluten for over 2 years now. They list the following foods as being higher salicylate foods: almonds, apples,. apricots, all berries, birch, cherries, chili powder, cider and cider vinegar, cloves, coffee, cucumbers and pickles, currants, grapes and raisins, nectarines, oranges, paprika, peaches, peppers (bell and chili), plums and prunes, tangerines, most teas, tomatoes, wine and wine vinegar, oil of wintergreen (methyl salicylate) and rosehips. Also aspirin or products with aspirin are on the high salicylate list. She now doesn't have near the issues she had when she was younger.

My daughter had a few episodes of losing time while in class. She said she would hear the beginning of a lecture and then the end but couldn't remember anything else said or done during the time period. When she was being evaluated for POTS last May at the Mayo they asked her how much time she thought had passed that she couldn't account for. She said about half an hour. She felt that she was not asleep but had a sort of passed out feeling but remained seated in an upright position. The Mayo told us that in her case since it was a half an hour of time that it was most likely related to her POTS. They commented that seizures tend to come in short time spans like seconds to minutes. For her, treating her POTS has helped this symptom. She's only had it once since starting treatment for her POTS. What you are describing for this young man, especially the blanking out while driving certainly sounds like an evaluation for seizures would be warranted.

This is a forum with both accurate information and generally great support, so it's good you found it. My daughter was diagnosed with POTS at age 16. This formal diagnosis was done at the Mayo last May. By age 7 years she was reporting to us the feeling of her heart racing but since she was not standing or sitting no changes showed on her ECG. Two other direct relatives had tachycardia around this age as well but never mentioned any other symptoms or ongoing treatment and seemed to outgrow it. Our daughter also had all the symptoms you mentioned for your daughter plus many sensory issues, and allergies to strange things like food dyes and preservatives. We just thought she was wired like other relatives but looking back we realize now it was probably how POTS manifested for her as a young child. For many years she wore Irlen lenses (special colored lenses that used the color spectrum she needed) that helped reduce her light sensitivity, migraines, and visual perceptual issues. She has been on the Feingold diet since she was a young child to reduce allergic reactions and migraines. We treated many of her symptoms naturally but all of the things we tried while they helped her maintain, she still seemed overwhelmed and sick even though she pushed herself to keep going. By middle school I homeschooled her for 4 years to see if I could figure out more ways to support her through these strange symptoms. Our daughter was always at 50% for height and weight until mid- adolescence and then shot up to the 95%. Before going to the Mayo in May she was put on fludrocort since her blood pressure runs very low. She felt a bit less tachycardia. After the Mayo visit she was put on a beta blocker (metoprolol tartrate) and for the first time since being very young she was no longer nauseous and her appetitie returned. Previously she was severely obstipated and using miralax twice a day for about 2 years. She still needed the laxative for about half a year but tapered down and now she finds that eating a certain brand of plain yogurt helps and she's currently not using a laxative. The Mayo also was very direct with her about the need to get at least 8 1/2 hours of sleep a night and only increase her bedtime half an hour on the weekends. Not easy to do as she is a junior in high school and has some college courses. She has been taking melatonin since age 8 and zyrtax (for allergies) for many years to help her sleep. She is on a 504 at school if she needs more time on assignments. The Mayo also found that she was low in ferriton and was showing some hypothyroid changes on tests but not presenting with hypothryoid. They also found on tests that she was very deconditioned and told her she needed to slowly work up to 30 mn, of continuous on her feet aerobic activity 6 days a week. For her all the additional things added since May have helped her improve greatly but it's still day by day. Ours is just one story and there are so many variations of how this presents. What worked for my child may not work for another but sometimes having a next step is hopeful, something to hang onto. Excuse if I repeated anything or my sentences ran on too much. I have severe meniere's and cervical vertigo so currently struggle doing visual stuff.

I can't speak from my own experience since I don't have POTS but can tell you a little of my daughter's experience with medication. She had low blood pressure even before starting meds, not much different than what yours is on medication. She was started on fludrocort for the low blood pressure until she was diagnosed. She was put on metoprolol tartrate (beta blocker) for the tachycardia. She has done well with her meds and felt mostly benefits. After a few months her resting heart rate went down to the mid to upper 40's (not her usual) and her blood pressure dropped to 80/40 sometimes when she was sitting. So she needed to lessen her beta blocker, even though she wasn't getting uncomfortable symptoms. It sounds like you might have experienced a sudden change and your body is responding to this drop. It may have been too high of a dose to start or it may just take a few days for your body to adjust. Since it is so uncomfortable and concerns you I would check with your doctor on Monday and let him know your response to the new meds. I'm thinking that your response might not be unusual at this point but hopefully someone that has experienced this can address that for you. You may also want to post what medication you are on and the dose so maybe someone that is on that medication can give their take on it. I realize that you are very uncomfortable with this reaction, and it certainly doesn't feel like the med is going to help but hopefully with some time and tweaking you will get some benefits.

Well, I do think this can vary from state to state even though it is a federal program. So I think you have to check your individual state. I maybe wrong on this but what I have seen happen with others seems to be services like rehabilitation services, private duty nursing (again might be limited but is individual case by case), physical and occupational therapy, and transportation services would be offered. Sometimes this would be in home, but some services you have to show that you are homebound (this doesn't mean you never leave your home but can show that being transported is difficult for you, things are unpredictable with your health and ability to consistently leave your home is difficult and service is needed in- home. This is the packet from the Medicaid site about services: http://aspe.hhs.gov/daltcp/reports/primer.htm I would click on chapter one as this addresses it and it's a long document. This is what they have to say regarding personal care services: " The services had to be prescribed by a physician, supervised by a registered nurse, and delivered in accordance with a care plan. Moreover, they could be provided only in the person’s place of residence. Generally, the personal care services a state offered were tied mainly to assisting individuals in activities of daily living (ADLs)--bathing, dressing, eating, toileting, and transferring from a bed to a chair. Personal care workers could provide other forms of assistance (e.g., housekeeping and laundry) only on a limited basis and only if they were incidental to delivery of personal care services". I think the housekeeping aspect is very limited even when you are unable to do this on your own, but maybe varies from state to state. If you find an in-home service that you like and is Medicaid certified they can be very helpful in checking into what is needed to get services and what services are allowed. Good luck

Just got back from pre-op examine for her surgery on Thurs. Just wanted to let others know instructions that were given by her primary physician to help her get through surgery. First he said to now start having her drink lots of gatorade or pedialite (she can't because she's allergic to dyes but we use Electro Mix packets in her water). She already drinks 12 cups of water a day but he wanted her to get extra electrolytes. He said that it was very important for her to take her metoprolol tartrate (beta-blocker) before her 7:30 a.m. surgery so she is to have one sip of water and take this. He said the beta blocker was important because normally the heart rate goes up during surgery. He said that she is not to take her fludrocort before surgery but gave instructions for her to be given 100 mg of hydrocortisone(I.V.) to keep her blood pressure from dropping, and will have a saline solution as well. Today her blood pressure was 91/50 and heart rate while sitting was at 54 and she is feeling well. Just wanted to share these suggestions for surgery. Also she will only be out about 45 mn. and hopefully won't have to be over medicated.

My daughter is having a minor surgical procedure done next week and will be put out for 45 mn. She will not be opened up so will not have that added stress to the body. I came across an article on general management of general anesthesia in a patient with POTS and will bring a copy of that with to the hospital. They are aware that she has POTS and it is a hospital with an excellent reputation. They said a nurse would be calling a few days before and the anesthesiologist will talk to us before the surgery. This is the site of the article: http://www.ispub.com...a-syndrome.html I will be talking to them about whether she should get her beta blocker and fludrocort before the surgery (pamphlet mentioned needed meds could be taken with one sip of water). The surgery is scheduled for 7:30 a.m. so she could take the meds after. The clinic also mentioned that someone informed them that my daughter would need additional recovery cortisone since she is on fludrocort. I'll address that when they call. I will be sure that she gets lots of I.V. saline. Any other suggestions? She is basically doing well healthwise but like others with POTS she has a good chance of it being set off if she follows her typical pattern. Any other suggestions?