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Everything posted by jenwic

  1. I've noticed that I am the most symptomatic after eating carbs in the morning. I can better tolerate them later in the day. I have no idea why. I also do best eating fat and protein with a small amount of carbs, especially in the morning.
  2. Thank you for the information! Are you super restrictive on the carbs (like keto)?
  3. Which diet do you think is best for POTS? I get symptomatic after eating and I am looking for some relief.
  4. Yes, POTS and a large Thanksgiving meal don't mix. Feel like rubbish today. I love carbs but they seem like poison to me.
  5. No, I haven't been tested for Sjogren's syndrome. I do have a very dry mouth and my tongue is sore and painful.
  6. Sounds like you might have a vocal cord issue too.
  7. I thought I had asthma and was on meds for it for 12 years. Then I found out I don't have asthma at at all, I have vocal cord dysfunction. I was wondering if anyone else has it and if it is related to POTS in any way. My main symptom is severe coughing fits several times a day. I've seen a speech therapist and have some breathing exercises that help some but not as much as I'd like.
  8. My POTS symptoms began in 1993. Ever since then, I have had issues with feeling bad after I eat. Carbs and sugar are the worst triggers, but so are large meals. My symptoms are: tachycardia, shakiness, weakness, strong urge to lie down, hungry about 2 hours after I eat, difficulty concentrating for a couple of hours after I eat, bloating, and sometimes dizziness. Breakfast is worst for me but I am able to tolerate more foods by evening. I have discovered that eating smaller meals and adding a fat or protein to my meal helps. I always thought that my symptoms were the result of delayed gastric emptying, but recently came across the description of something called dumping syndrome (or rapid gastric emptying). People who have this have usually had stomach surgery of some sort, but some people who have it have not had surgery. I have not. The only surgery I had was to remove ovarian cysts and a gangreene, abcessed appendix. This is; however, when all my POTS symptoms started, including the symptoms described above. Has anyone else heard of a connection between POTS and dumping syndrome?
  9. When I started taking Florinef several years ago I began having the stuffy ears feeling and the roaring sound in my ears. I also had headaches,which finally went away even though I stayed on the Florinef. In June Dr. Grubb upped my Florinef to 2 pills per day and now the ear symptoms are worse (like when you have a cold with a lot of congestion and you can't hear right). I have also been having killer headaches. The most painful symptom is that my head feels like it will burst open when I cough or bend over. These "cough headaches" didn't start immediately after Dr. Grubb increased my Florinef, maybe a month or two later. I don't know if it's related or not.
  10. Rachel, Thanks! I'll definitely check those links out. Katybug, I've been seriously considering a chiropractor. I went to one a few years ago. I think that might be my next step. If that doesn't work , I might try a neurologist.
  11. Thanks Rachel. I have not been tested for Chiari. I have read a little bit about it. Do the symptoms hit you suddenly or are you born with it?
  12. Katybug, I'm definitely going to try the tennis balls! I always feel better when I can massage the back of my neck at the base of my skull. It's pretty hard to do that alone , though. Kirsti, I increased my Florinef dose in June, but the headaches didn't hit until Sept. Dr. Grubb said the headaches probably aren't related, but it is still a possibility. Chaos, I'll have to read up on the ice pick headaches. This last antibiotic doesn't seem to be helping. I have one pill left, but the headaches are still here. The headaches seem to get worse with stress, but are also with me when I am just at home relaxing.
  13. I have been having a lot more headaches during the last month. I am now on my third course of antibiotics (all the drs. I've seen seem to think it's a sinus infection). The headaches sometimes start at the base of my skull where it joins my neck. I've always had this kind occasionally, but now they are daily. I am also having sharp pain around my eyes. There is a tooth (an upper molar) that shoots pain up to my eye. I've had the tooth x-rayed and it is ok. The brand new headache I'm having is when I cough or bend over I have these stabbing pains in my head. It feels like my skull is going to split open. The pain only lasts for a minute or less. I'm wondering if these headaches could be a new POTS symptom. Do any of you have headaches like these?
  14. I don't know if it's related to POTS, but I have it too. My hair is very fine anyway, and now I am losing a lot.
  15. I can't offer any advice, but I just wanted to comment on the ear fluttering sound. I have been having a headache that has been going on for almost 2 weeks. It hurts most when I cough or bend over, but hurts off and on at other times too. I also have the same ear fluttering or popping sounds you described. I thought it was a sinus infection, but finished a course of antibiotics and I still have it.
  16. Thanks, Sue. One of the ladies from the website who had a video on there has given me her phone number so I can talk to her about it. I am very curious about it.
  17. I have been researching a 3 day workshop called Dynamic Neural Retraining System. It is led by a lady named Annie Hopper. She says she used to suffer from multiple chemical sensitivity. She claims to have cured herself using the steps in this program. She says that people who suffer from multiple chemical sensitivity, fibromyalgia, anxiety disorder, and other disorders discussed on her website have a problem with the limbic system of the brain. She says the "wiring" is faulty and through her exercises (you spend 60 minutes a day for 6 months) you can reprogram or reroute your brain circuitry. She has many videos on the website with testimonials by people telling how they started to feel better and see results in only one or two days. The website is http://www.dnrsystem.com This just seems too good to be true. Anyone out there heard of it?
  18. Here's a link on POTS and dental work: http://jada.ada.org/cgi/reprint/137/4/488
  19. Alicia, I can completely understand what you are going through! I am so sensitive to the numbing meds that even the ones without epi make my heart race, I feel weak all over and breathless like I might pass out within a minute or two after the injection. I am also putting off going in for a tooth that I think is infected and needs to be pulled or get a root canal. The dentist gave me antibiotics for it about 6 months ago and I still haven't taken them because the last time I took them I get wheezy. One dr. (Dr. Bernstein) told me he thinks I have multiple chemical sensitivity and another (Dr. Grubb)thinks I have a mast cell disorder. I take one Claritin in the a.m. and one in the p.m. and I also take Zantac. Before my next dental work I will probably take 50 mg of Benadryl on top of the other meds. I'm going to look for a link to a site about dental problems and post it below. Sorry I am not of much help, but know you're not alone. I'm sitting here typing with my tooth hurting. Jenny
  20. I have this too. The back of my neck hurts where my head joins my neck. Sometimes it progresses to a bad headache.
  21. I can't get them. I get very tachy and weak, but I probably have MCAD so I don't tolerate meds well.
  22. Sounds like you have had a very stressful week! You are going to need everyone in your family to pitch in and help take care of your dad. Even children (if they're old enough)can help out in many ways. Maybe your siblings could take your dad for a while in the evenings and on weekends. Or they could come to your house and help out then. Do you have a program in your area where senior citizens can go and be watched during the daytime (like a babysitter)? They have that where I live. Hope you get some help lined up!
  23. Is your skin flushed with the burning feeling? It could be mast cell related. You could try Benadryl, Claritin, Zyrtec, or Allegra.
  24. I have noticed that I can take some meds better if they are generic and some better if they are brand name. It must be the inactive ingredients. I am suspected of having MCAD, so this might be the reason. Claritin bothers me, but the Walmart brand of loratadine doesn't. Today I tried Zantac (brand name) and I am wheezier than usual (I have asthma) with drainage down my throat and a tight feeling in my throat. I was pretty tachy this morning, but I am better this evening. I think I will try the generic Zantac next. Hope it doesn't bother me!
  25. Alicia, I have lots of problems with sensitivity to meds too. They cause me many problems including heart racing and pounding, shaking and tremors, nausea, weakness, insomnia, diahrea, and many more. I also have similar reactions to chemicals and foods. It has gotten a lot worse in the last year. I'm not sure there are even any antibiotics I can take now. I recently went to see Dr. Grubb and he said I probably have a mast cell disorder (MCAD). He wanted me to start taking 2 Claritin pills per day (one in morning and one at night) and after a few weeks add an H2 blocker like Pepcid or Zantac. He also wanted me to take Singulair, but I can't tolerate it. He said if I feel better on this medicine regime then I likely do have a mast cell problem. He said it can be difficult to diagnose MCAD and trying the meds and seeing if they help is a "clinical diagnosis". It might be worth a try for you to try an antihistamine like Benadryl, Claritin, Zyrtec, or Allegra and see if it helps. I can tolerate some of them better than others. Dr. Grubb even said that sometimes patients can tolerate a generic instead of the brand name or vice versa depending on what the inactive ingredients are in it. I know it is very unpleasant, but you might have to try a few before you can find one you tolerate. I hope you can find some relief soon! Jenny
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