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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 you want a sweet snack, not like a cookie, but I add just a LITTLE peanut butter:) (*I really like a cookie in the evening, or the siggys yogurt if you like yogurt has less sugar but no artificial sweetners*)
  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 something simple, like brush my teeth or get ready for bed, or think I am feeling good enough to go to the kitchen to eat supper, and then have to lay back down. My doctor just retired, and knew it may become an issue that another doctor may not feel comfortable ordering the Hydrocodone/APAP, which is exactly what has happened. He was not even nice about it. Anyhow, my nephew has used Imitrix, not sure of the spelling, but it is for migraines. Has anyone used that? Has anyone else run into the problem I am having now with a doctor not wanting to order a narcotic pain med for migraines? I have been on it as needed for 2 years, so I am not abusing them, but I hear on the news all the time about the pain med addiction problem, which is making it difficult for those who are using it appropriately. I do understand the doctor's view point, I just do not agree with it.
  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 listed above, can be caused by food allergies, and wants me to just continue a gluten free diet. I really got the feeling he did not want to see a "patient with complex issues." Anyway, I need a doctor who understands what it is like to have not only pots, but also cfs and FM, and migraine. He does not seem to be the one. I know many of you have also had trouble finding a doctor who understands us, so yes, I am asking for a lot:) So, I don't need a diagnosis, I have all that, and have been dealing with the illnesses for 10 years, but I still want someone who thinks these are real conditions, not just that I am tired and have a headache, or need to drink more water etc. I live in the state of Virginia, near the West Virginia line, and about 2 hours from Washington D.C just to give you an idea. I cannot drive more than a few miles around town, so have to get someone to drive me if it is out of the area. I would almost rather go to West Virginia rather than to northern Virginia with all the traffic there. Anyone near me that has a good doctor? I know there is a doctor list on the dinet site, but thought there may be someone not on the the list. I have checked the CFS support site for doctors as well, but the only one listed near me is the one who retired. Thank you!
  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 in the beginning, but felt like I was fading away. Do you have other symptoms? I started keeping a journal of symptoms and what I had been doing. For example, I would get short of breath going up steps, or be exhausted after vacuuming, and my heart rate would be around 100-120. I too would suggest trying to find a doctor, even if you have to travel, that is listed on the website, because as of now, it does not seem like you feel you have the correct diagnosis or treatment.
  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 is not something one can push through. I still have to learn that from time to time on a day I do too much. I stopped working about 6 months ago, and my pain has been much less, the fatigue, less debilitating IF I limit my periods of activity with rest. I worked many years with pots, as I was not ready to give up that part of my life. I did go from a more physical job as a nurse, to an office job as a school nurse, and I do think that helped me to be able to work longer, but in the end, for me, it was still too much. I did have cranial manipulation treatments early in my pots for several years, and I felt that helped me some. Look on Cranial Academy.com for a list of doctors who do this. It was recommended to me by Dr. Michael Goodkin, who was a cardiologist I saw in PA whose daughter had pots. He is now retired, but was a wonderful doctor to me. The main reason I am no longer doing it, is my local guy retired, and I was having to go an hour away to get the treatments, and my insurance did not cover his fee. The first doc I saw for cranial was only a co payment, just like any other doctor. The other doc was out of net work. I also used a TENS unit for back pain in the evenings after work, and that helped me.
  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 morning seemed to go by fast. 1200-1300 Light lunch and did some reading on the computer, checking email and the dinet site, read some information on pots from Dr. Blair Grubb. 1300-1600 Usually rest time. Sometimes I listen to some old talk radio podcasts( Bruce Williams), relaxation music, or quiet. 1600-1800 I make a cup of coffee and watch the Ellen show some days at 1600. That often cheers me up, as she has some funny or cute things on. Some evenings I talk on the phone to my sister, about once a week. I do any supper prep, I try to do things that can be put in the oven to bake, salad in a bag, or veggies that can be microwaved. I take a bath and put on my nightgown, and by then, supper is ready. I usually eat in bed, since I have an adjustable bed I can sit the back up, and have my legs up. If I eat in the kitchen, I prop my legs on an extra dining room chair. Sometimes my husband is home, and my daughter gets home from work, and we visit a bit. 1800-2100 In bed. I listen to the local and national news. My husband tells me about his day. We usually have Wheel of Fortune and Jeopardy on tv. Then we watch something we have recorded. We like General Hospital, (I have been watching it for 40 years, since high school), and a new show called The Good Doctor, Dancing With The Stars. I fall asleep by 2100 and sleep until 0730. (up to the bathroom once) Sometimes it seems I have not done much during the day, it seems everything takes longer. I drink water and Gatorade all day.
  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, but many of us whether sick or healthy have family support with children. My husband has a saying for me, and perhaps you have heard it before, "you have to find the new normal". Life may not be normal as you know it right now, but the new normal is just different. Allow yourself to grieve and be sad over things in life you miss doing. That is normal. But then focus on something you can still find enjoyment in. I jokingly compare my life to the ice cream stand, and tell my husband they only had chocolate and strawberry, and I wanted vanilla, so in other words, I don't like the hand I have been dealt, but I am dealing with it. Some days are better than others. Try keeping a journal. Make notes daily of what you did, or how you feel. Later, when you look back, sometimes you can see you made more progress than you thought! Blessings and hope to you:)
  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 the past, I have tried to decrease or go off of different medications I have been on, just to see if I could do without them.(with doctors okay) I found that what I am on is what I need, and decided not to mess up a good thing anymore:) Maybe you can just find the lowest dose that helps you, and be okay with that:)
  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 internal medicine doctor who is accepting new patients, but February is the soonest appointment. The receptionist said he sees cfs patients, but that is all I really know. People seems to know more about cfs than pots. Many doctors in my area are not accepting new patients, even though I have insurance through my husband. So, my problem is, I have been denied disability at the first level, and have been working with the legal assistant of a lawyer who does 50% disability cases, but has not officially agreed to take my case. She first read 6 months of medical records, then requested the previous 6 months, but still no real answer. The legal assistant said to be sure and notify her if I received a denial letter, which I did, but their office does not return my call, and today is a week. I contacted another lawyer, and they sent a pack of paperwork for my doctor to complete. I am considering asking my doctor who retired, because who else would say what I can and cannot do when I will be seeing a new doctor, which I have not found yet. The paperwork is at least 10 pages long and asks the doctor what I can and cannot do physically and mentally, and most doctors do not want to complete that, unless they truly understand the limitations of cfs and pots. (They said this is so the lawyer does not have to read all the medical records) I was seen once at Hunter Hopkins Clinic in Charlotte NC I think in 2010. (Dr. Laura Black and Dr. Charles Lapp) They do not accept insurance, and when they submitted it after I had paid a high cost, I think 500-1000 dollars, my insurance did not cover anything, so needless to say I could not go back as it was too costly, especially with travel and overnight lodging. They did seem to know a lot about pots and cfs and were willing to help with disability, but at the time, I decided to keep working. Has anyone used these doctors to help with disability? I am trying to take things step by step, but it is overwhelming at times trying to find a doctor who will support me through this process now that my doctor has retired, and trying to find a lawyer who is willing to talk to me and take my case. Sorry this is so long, but any suggestions from anyone who has had experience with this is appreciated. Thanks for listening:) Mostly, how did you find a doctor to work with you through disability, and how did you find a lawyer to talk with you and take your case?
  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 using it for about 5 years. Has been keeping me regular every morning! I think each teaspoon is about 325mg of magnesium, but just going by memory.
  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 down in families? I have read some about it, but not a lot. Firewatcher, I too struggle with migraines, almost daily right now. I believe they are hormonal related. My doctor who is retiring is a PCP. I have not met his replacement yet. He felt the best advice he could give me for finding a doctor willing to treat pots, is someone with an interest in it. Unfortunately, I do not think many doctors have an interest in it, and since they do not know how to help us, I think it can be frustrating for the doctor as well. All I really want is someone who believes me, and is willing to try. I was seeing a doctor for crainial manipulation therapy which has been found to help some pots patients.(not a cure, but I did feel better) This doctor was 80 years old, and did only manipulation treatments. He cared enough to look up pots and read about it, and really understood it! I think the manipulation treatments helped me, but he passed away. Now, the closest doctor that does these treatments is an hour away, and too expensive.
  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 started at 2 minutes, and worked up to 3 mins, then 4 mins. thinking my body would get used to it, but it did not. My doctor mentioned at my last visit "he does not want me to get deconditioned". Well, just trying to take care of myself is going to have to do it. My answers to the poll did not fit neatly in the boxes mainly because of the last question, I do not feel I benefit from it. If I had chosen an answer, it would be to improve self esteem. It always makes me feel good if I can accomplish something, but this exercise thing, unfortunately has not been working out for me. Thank you to everyone who shared their experiences. It always helps me to be able to relate to someone who is going through the same struggles with this chronic illness.
  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 bleeding as well, but still seems quite ok, and for sure preferable:) My daughter suggested I list epi as an allergy!
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