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kclynn

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Everything posted by kclynn

  1. I thought I would ask here. Don't like artificial sweeteners but not opposed to stevia or erythritol. Other natural sweeteners ok as well. Thanks
  2. I know educated Drs. in the midwest are difficult to find but I thought I'd ask anyway. Been on this journey for awhile. Asking in case there might be a new name or two pop up because things do change.
  3. Thanks! I hadn't been able to find anything about this.
  4. I'm asking because my son has taken Focalin XR 20mg (which is a fairly low dose) for several years for brain fog as recommended by Dr. Grubb. His brain fog can be severe and this really helps. This past week he has been off the Focalin because of a prescription issue but will start again next week when school starts (he is 20, in college). He says he feels happier off of it but also has a return of some loopy (like intoxicated) behavior that was really bad in high school. We see it very mildly every once in a while but has been rare. I hadn't connected this med with the reduction of this behavior/symptom. He has been stable for a long time with maintaining midodrine, florinef and the Focalin XR so he doesn't see a pots a dr. specifically so I don't have a Dr. to ask who would know about this.
  5. I'd be calling very regularly to check on cancellations.
  6. Just got on here and saw your question. I'm from Milw but haven't lived there in a long time. I've heard lots of good things about Drs. Chelimsky. You should be in good hands there. As to the Lyme, I saw on a slide from Dr. Grubb at the recent Dysautonomia conference he listed Lyme as a cause of POTS. My son has Pots and was dx two years later with Lyme by a cdc positive blood test, though a positive blood test isn't required for dx. As for the Dr. referring you to mental health, this unfortunately is a common scenario when a Dr. doesn't have answers, blame the patient. Lyme can cause many neuro psychiatric symptoms. Good luck with your treatment!
  7. My son was dx with Lyme and co 2 years after he was dx with pots. He is cdc positive for Lyme which is very positive but a person can test negative for Lyme and still have it because of the way the tests look for immune response and the Lyme can affect an immune response. Anyway about your question. He felt much better after 4 months of treatment. Then continued to treat for another year. He is very fuctional but still has POTS symtoms. I don't believe the POTS ever goes away and would probably steer clear of Drs. that say it does. It does go into a sort of remission. My son is 20 and wanted to stop treatment so I don't know if further benefit could have been had. He had pretty much plateaued.
  8. The teacher let him take 2 days off and write papers and then Friday they just played water games which he participated in and had no trouble. Monday will start the beginning of the second 2 1/2 week session so I will go and discuss with the teacher how we can get him through this and it would be easiest to do it this way, but not of course at the possibility of endangering him. If she isn't willing to significantly modify things then we will have to do something else. I think she will as she is really great and concerned with his success. I had asked about an online pe class and that wasn't an option. I am sure they will do some other modified class if it is needed. His Dr. who is in this district told me last night they will do that and he can do bowling, horse shoes, modified tennis, etc... make a plan for him. She is on board so that is great, too. They wouldn't count his Physical Therapy which is stupid, but in general the school has been great about things in many ways. Hard during the summer not to be able to get answers Thanks for the support. Christy, how is your son doing? We haven't chatted in awhile.
  9. My son is taking swimming for summer school. It seemed like the only PE class he could handle. He is having pre syncope symptoms, black spots and dizziness. I am bummed. I had heard swimming was so good. The teacher has had him in other classes and totally gets his medical conditions, doesn't make him push, lets him sit out, even let him take 2 days off at her suggestion and write reports. The last time he was in the water he felt that way after swimming 1 lap though. Today is the last day of the first session so he has 2 1/2 weeks to go. Anyone else have symptoms while swimming? He said he got dizzy when turning his head to breathe.
  10. Going to a chiropractor while waiting the 6 plus weeks to get into the pain clinic. He is highly recommended. The neuorsurgeon won't see him because all his films are normal. Katybug will look into that workbook. Thanks
  11. I have asked many, many Drs. and they never feel its a possibility. He is mildly flexible and doesn't have the "typical appearance". Dr. Abdallah in VA felt he does or could have some mast cell issue (flushing, rashes and dermagraphism (sp?) We don't see him anymore, though, long way to travel.
  12. Neurosurgeon won't see him because all his films are normal. Dr is referring him to a pain clinic and also psych because he had a numb tongue last night and she says that is a sign of anxiety. Do I sigh or do I cry?? I just want someone to help him.
  13. Issie, I am the same way. Dr. prescribed me 50mg 4 times a day!! I didn't like the way it made me feel, but then I thought to try 1/2 dose which helps and I take maybe 1 a day depending on pain and if I'm going anywhere. Rama, I can see from descriptions how this might be a possibility. I am also thinking maybe myofacial trigger points? Sometimes when he might be not having much pain, if I accidently rub a spot on his shoulders or back he really reacts and then the pain stays. I was wondering about Fibro, that is my issue and when I was going over the spots they check for fibro he also seemed to have points that hurt more. I'm not a Dr. so beyond my suspicions I don't know. Being a 17 yr old boy makes it more difficult for Drs. to think Fibro...
  14. Would the spondylitis show up in an xray? That is what the rheumy was looking for I think. Lots of things to consider and think about. Katybug, can you imagine what it might take to get a highschool boy to sit on a special cushion in class?
  15. My son has had back pain ever since he has been diagnosed with pots. It has flared up from time to time. Last year I got his gp to send him for physical therapy but it never helped one bit. The Drs have never paid much attention to it even though I have told everyone. But now it is really bad. I have had him to a rheumatologist who took xrays of his lower back even though most of the pain was upper and blood tests and then referred him to a pain clinic. Wasn't sure we had investigated enough so took him to his gp. She actually gave him a very thorough exam of his spine and found several spots where he really jumped with agony and several other significant flinches. She thinks he has at least 3 pinched nerves, sent him for an mri which was negative. Now referring him to a neurosurgeon and pain clinic. I know that it will take weeks to get into see anyone. In the meantime they refuse to give him any pain meds. He is taking Mobic 15 mg and can't take any other anti inflammatory with it. I hate to see him yelling in pain at night. Sometimes its not so bad and he can go to school, other times he is hurting too bad to sit in school. It always seems to hurt more at night when he sits and relaxes. If he keeps moving it seems to help. His pain is along both sides of his spine, top of his shoulders and neck, and lower back along his hips. Last week the worst was middle upper spine and the last two days lower and above the hips is the worst. I was wondering if anyone here has had similiar back pain that is associated with thier pots? I know the Drs. need to figure out the source of this but I want to be sure I am getting him to the right Drs. that would know. Thanks!
  16. Looneymom, does your son still have this? I read on your blog you were using an amino acid supplement with some success? My son has done this for 2 years and the neuro says tourettes but I can't help thinking its related to the pots and just wish I could find more connections. He has fully body jerks that get very bad and wear him out. What can you do for low dopamine?
  17. I don't have any helpful answers but am wondering who did your son's tests for this (what kind of Dr.)? My son hasn't ever had these tested, nor cortisol or anything else. Thanks
  18. Ginger, I am sorry this is happening to you. Even if you don't go to a church reach out to one and you might find some help you wouldn't expect.
  19. My son had symptoms starting before age 14, diagnosed at 15 when he became home bound for a year, the next year he attended school part-time, this year at 17 he is full time school, also has a job (4 hours a week) and also some activities such as trap shooting and bowling. He got his Drivers license last spring which I think had a huge influence on him, letting him know that not all his dreams were smashed. Turns out he also has Tourettes which gets worse when he has pots symptoms or if he has Tourettes tics the pots symptoms get worse - very hard to tell what makes what worse. The Tourettes came on exactly when he got so bad he became home bound at 15 and I remain convinced there is a strong connection since there is no genetics we can determine in the family. Anyway, my son became severely depressed during that home bound year. We were happy to have a diagnosis that he would eventually recover, he only heard life as he had planned was not going to happen, no carefree teen years for him. That was the most horrible, terrible year. Sometime during the following year he found himself, he now has a positive outlook on his future and is beginning to think about college. POTS doesn't travel a straight road and we realize there can be relapses, but he has found a balance. He can not over do it, or he has a rough few days. Evenings can be tough, he did his math laying on the floor tonight because he was dizzy and couldn't get up. He does get down of course, but there is hope. He recently told me he is willing to reach out to other kids, so if your boy would like that, message me. Hope this helps, I know as a mom how heart breaking it is to watch our kids struggle and hurt so much.
  20. Jangle, there are new studies on Fibromyalgia using MRI's showing pain response areas lighting up in the brain as a result of painful stimuli. Validates the physical nature of Fibro and also studies pointing to Fibromyalgia as a central nervous system disorder. I have Fibro.
  21. You are not at square 1! It sounds like you have a Cardiologist who really doesn't understand pots and that unfortunately is a very common thing. Spend much time on the forum and you will see that over and over. I don't know what part of the country you are in but consider going to one of the more well known Drs. at least to get a diagnosis and started on a treatment plan. If your primary is willing she may even be able to monitor you with the help of one of those Drs. I am surprised he gave you fluids before? I haven't heard of anyone getting fluids before the test, but maybe it's done and no one has said. When getting a second opinion be sure to mention that. Yes, it is normal to feel bad after a TTT for even several days, but it depends on who you are. My son felt bad but didn't totally crash.
  22. Take verifiable printouts of articles from Dr. Grubb, Vanderbuilt etc... They all say over 30 bpm rise and that blood pressure does not have to drop to meet the criteria for POTS.
  23. Is your new appt soon? I would have the other Dr. request the records in that case. You may still have to pay.
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