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mountain girl

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Everything posted by mountain girl

  1. I also had weight gain since becoming sick. I know some blame the beta blocker, some blame the florinef, I started both at the same time so not sure which to blame, lol. I just read about the new weight watcher free style program. I did not join, but you can see what their zero points food chart is on that plan, which is things like chicken, turkey, eggs, fruits and veggies. I cheated some of course over the holidays, but some how managed to lose 4 pounds in about a month just trying to reduce sugar and sugary foods, and concentrating on lean meats and veggies. Apples are especially good if yo
  2. I think it is fine to bring up an old thread:) Interesting to read others often get headache pain on the left side, which is where mine starts. It usually starts behind my left eye and hurts so bad I cannot keep it open, then often gets behind both eyes. I read some place that behind the eyes is a common place for migraine pain. I had not known that before. I am curious to know what you guys take for your migraines. I used to take Cataflam, but then it stopped working, and the doctor ordered Hydrocodone/APAP, which always works. It sometimes will come back if I get out of bed to do someth
  3. So, my PCP retired this past October. His daughter had/has pots, and he had an interest in the pots, FM, CFS/ME illnesses even before that, so he was wonderful. He said I really don't know who to send you to, so I just had to call around seeing who would take a new patient. I ended up going to a doctor I had seen before this one, who was just okay, renewed my meds and accepted them as what I needed from a cardiologist I had seen as far as the pots, who is also now retired. Well, todays visit did not go well. He thinks my pain and migraines, which are associated with the conditions I have liste
  4. I am on Florinef 0.1 mg every morning and feel it helps me. The doctor monitored my potassium, and I was fine for a number of years without a supplement, but eventually it went just below normal, so I now take a potassium capsule. I did not experience any side effects, but I understand your concern, as there have been a number of drugs that did have unpleasant side effects for me. I noticed feeling some better within a few days of starting the med. Best of luck to you:)
  5. I am on Florinef 0.1 mg also once a day in the morning. I too could not tolerate higher dose as it kept me awake at night. I do not track my salt intake by milligrams I just add salt liberally to foods and drink water and Gatorade. I did find I felt better on the florinef than before I started taking it, and when the doctor's office did not call it in for a refill and I missed 3 days of it I felt terrible. My b/p is normally about what yours is, which for me, is not low enough to make me feel bad.
  6. When you say the valium is not working like it used to how would you describe it? The reason I ask, is that I am on lorazepam (Ativan) 1 mg. I have been on it as needed since 2008, and now take it once or twice a day. I do not feel like it is as effective as it was when I first started taking it, but it still helps. So no, I have not gone off of a benzo and made it to the other side, but I can easily not need it for a day and be okay. I don't think I have ever gone longer than a day or two with out.
  7. I experienced similar "surges" as you describe them when I first started with POTS symptoms. I could feel the tachycardia coming on so to speak, then my HR would go to the 160 area. I too had several visits to the ER where they diagnosed anxiety and normal sinus tachycardia. I had some when I was laying in bed doing nothing, and some that actually woke me up during the early morning hours. It was not until I saw a cardiologist with my journal of symptoms, that I had the tilt table test done. I also experienced the trembling and shaking and felt like I could not breathe. I did not pass out
  8. I used to take CoQ10 as suggested by a physician I was seeing. She had also suggested a high quality multivitamin. I initially thought I had a bit more energy but it did not last, so due to the expense of medications as well as other supplements, I stopped the CoQ10, and could not tell any difference. If I remember correctly, she had commented it would be good for me to take since I am on a beta blocker.
  9. Thanks vepa, you make a good point about the lab work if that has not been done.
  10. While I would like to have a good answer for you, I am not sure it is what you want to hear. I was like you in that I never missed work, before becoming ill with dysautonamia syndromes. I also experienced the debilitating fatigue, and pain. I wonder if you have sick leave, vacation time, or any type of short term or long term disability at your job? That would at least allow you to see how you would feel if you could have some extended time off. I never had a doctor say, take some time off, but when I felt so bad I took 2 weeks off, I started to feel better. I have had to learn this
  11. I made a schedule for myself when I stopped working and felt I needed a routine. I feel like my activities resemble an old woman too:) I made my day general, but there are some days I am in bed more, some days I can be up more. 730 coffee in bed 800-1200 take medications, get dressed, light breakfast, watch local news and weather. Put a roast in the crock pot for supper. Today was my day to go out and have my hair washed and dried. Other days, I do small household tasks like tidy up the kitchen, make the bed. Today I just did them later. I rest in between things as I need to, so the
  12. Madisonjan7, I am so glad you found this site. I can see others have been very informative and supportive to you. POTS is different for all of us. I am married, and have two grown daughters. My husband is very supportive, and has been from the time I became ill. We adapted to what we could still do together. I have a pen pal friend who has pots, and she has had it since she was young like you. She is married and now has a 5 year old son. Another friend, their daughter has pots. She became ill at age 22, and is married with 3 children. They both have family support, b
  13. Thank you to all who responded about what helps your migraines. I do know the computer screen can trigger them for me, so I do limit my self. It is difficult sometimes, as I enjoy the dinet website for "company and friendship".
  14. I have been on Ativan (Lorazepam) since the start of my illness in 2008. It was originally given to me for what the ER doctors thought was an anxiety attack, but I found it helped with my chest pressure/discomfort, and overstimulation feelings I get with pots. I take 1mg twice a day as needed, so sometimes I do not need it. Normally, I find by late afternoon or early evening, I need it. I do have a diagnosis of anxiety as well. With the pain and fatigue I experience daily, for me, it weighs on my emotions, and I get crying spells or upset easily. If it helps you, I would stay on it. In th
  15. I also experience the muscle weakness. For me it is most notable in my arms and hands, but also have it in my legs. I do not know what causes it, but yes, cutting things is difficult for me too. I was diagnosed in 2008 with POTS.
  16. I am currently going through the process of applying for disability due to my limitations from cfs & POTS. My doctor just retired 10/01/2017. He was kind enough to write a letter for me explaining how cfs and pots affects patients, as well as his credentials and experience of 30 plus year working with these types of patients before it was "widely known". He said he was sorry he did not have any doctor he felt good about recommending for me, and gave me his cell number so a new doctor could speak with him if they would like to. I was able to get an appointment for February 2018 with an
  17. I have had pots for nine years, and somewhere along the way, a diagnosis of cfs and fibromyalgia was added. I have been getting migraine type headaches for about 2 years. I was wondering if others are experiencing these, and what helps you. I used to take a non narcotic like Aleve, but it stopped working. I have Vicodin ordered, and that is the only thing that helps me, along with laying down in a quiet dark room. Previously, they were hormonal related. Now I am thinking stress related as well.
  18. I take the Calm Magnesium powder. I use it for slow motility, one teaspoon in the morning mixed with water, and one teaspoon at bedtime. Vita cost.com is the least expensive place I have found to purchase it. I have heard as some others mentioned that it helps with sleep, and it may help me feel relaxed, but not sleepy, so taking it in the divided doses is what works for me. I am very sensitive to medications, but have not had any unpleasant side effects. If my bowels get too loose, I just decrease the amount of powder, which does happen from time to time depending on daily diet. I have been
  19. Interesting nmorgen that you were more optimistic in the beginning, and not now. That is so much how I feel. In the beginning I had more hope. Now after just feeling sick for so long, I agree, it is more depressing. It takes a toll on you so to speak. You said your oldest child is showing symptoms, and my oldest daughter has pots, and my youngest who is 32 has "syncope", so while she does not have the pots diagnosis, I think syncope is related. (She has passed out a number of times when standing someplace, usually at work. I wonder if any of the studies show how common it is to be passed
  20. Yes, I have experienced this. When I was working, most of my friends were through my job, but when I was no longer able to work, it was just a note or text for a speedy recovery. I wish that were the case:) It is lonely sometimes, but yet as others have said, it does require energy to socialize, and I must admit, I am too tired most days. I have enjoyed emailing with a friend I met on this site. We have been pen pals for about 8 years now!
  21. I just had a root canal done this summer. I did briefly smell a bleach like smell, but it was not any stronger than how it might smell if you went to a swimming pool I would say, and did not last long. It was not as bad as I had expected. I made sure my dentist knew I am sensitive to Epinephrine, and he used an alternative numbing solution that did not trigger my tachycardia.
  22. I also have used a TENS unit for scapula area back pain, with success. My husband ordered for me I think on amazon, so not an expensive model. The main draw back for me is it is difficult to place the electrodes myself, much easier if someone can help, and I like to use it mostly when resting so I am not moving around with the wires getting in the way. Hope it brings you some relief:)
  23. I see this was an older post, that has been brought up again from time to time. I have a diagnosis of pots and cfs. I have tried exercise a number of times over the past nine years. (water aerobics, stationary bike, walking) It always leaves me feeling wiped out. Some easy yoga in bed is the most I can do. My husband bought a rowing machine, and I tried it very slowly for the past 2 weeks, and get headaches almost every day I have done it. I was looking to see what some others have experienced with exercise, and saw headaches listed by someone, so I know it must not be "all in my head." I star
  24. I also experience dizziness, nausea, become more fatigued when looking at a computer screen for too long. I actually got rid of my smart phone for a flip phone. I like coming to the dinet website for information, but can only do so in short visits. I also find it can trigger migraines.
  25. I have had this experience with both a skin biopsy for skin cancers and at the dentist office. I always tell them no epi, the plain lidocaine works fine. My dermatologist is very understanding of this, and it is no problem. The dentist, well, he gave me the epi after I told him I could not tolerate it and I thought my heart was going to beat out of my chest! His partner I saw the next time, and he had actually heard of pots and knew about the symptoms, and only used lidocaine. My PCP said just always remind them to only use lidocaine. Oh, and by the way, yes, it does not help control the bleed
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