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mountain girl

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Everything posted by mountain girl

  1. I take restoril every night for sleep. For me getting a good nights sleep is one of the best things I can do to feel the best I can with having pots. I have trouble falling asleep and staying asleep without it.
  2. Thanks for all the responses. It was interesting to see that alot have pondered this question. My current dr thinks the cause of my pots may be what he calls biomechanical, meaning that because I have had alot of neck pain and muscle knots from fibromyalgia, he believes the cranial manipulation will help, and it has, but of course no one knows how much or for how long. It makes sense to me because the cranial nerves that control hr etc are are at the base of ones brain. Sometimes I think I could work full time, but since we have been doing okay financially, my husband doesn't want me to push myself too much. I have been for counseling re: the dealing with pots and how it changes your life, but he thought I was dealing pretty good, which was nice to hear, and of course this website has been more help than most anything.
  3. I also felt awful on the first bb I was given. The one I take, Bystolic is thought to work differently than most, but I still felt bad and was ready to stop after a day or two so the dr added florinef and it kept my bp up but hr down and made a difference for me. Without the florinef I felt like I was going to pass out and bp went low. I could tell a difference within 3 days after that. Your body may adjust somewhat, but I would say if you continue to feel worse instead of better call your dr.
  4. I wonder if anyone else asks themselves is this as good as it gets? Let me clarify by saying I am lucky enough to be able to work part time, I just do not have the energy to do much else. I do go to the grocery store, usually with my husband, but not a "normal" type of life by any means. I haven't tried alot of meds, but I am almost to the point where I do not want to try any more meds. I take a beta blocker, florinef, for the pots and now supposed to try ritalin. I do take other meds for other things. Is there anyone maintaining on no meds for pots? I did talk to a guy in my area who is able to work full time, but has a computer job. He takes no meds, but feel bad most every day.
  5. Sometimes I wonder if I really am feeling better or if I am just getting used to feeling this way, but I believe I am feeling some better. I attribute it to the cranial manipulation treatments I have been getting and finding that my ferritin level [iron stores] were low and getting on an iron supplement. Also I think I am learning a little bit more not to push myself too much. I have been dealing with pots for 18 months and the dr thinks could be chronic fatique syndrome as well. Dr. Goodkin was big on the cranial manipulation and I do think it has helped. I was skeptical, but I keep going back because I did feel better after the first few weeks. I also still drink the gatorade.
  6. I just got home from my Dr appt in PA with Dr. Goodkin. He wants me to try Ritalin to help with the fatique I still have, so I came to the dinet site to see what others may have experienced. My insurance is requiring prior authorization, so I could not get it filled yet. Just wondered how many people found it helpful.
  7. I do feel nauseated frequently, but feel worse if I do not eat. It helps me some to lay down before trying to eat, as the longer I am up the nausea comes on. I like things like toast, yogurt or the individual fruit cups or applesauce, cereal. I do eat other things, but bland seems to be good for nausea for me. I thought about drinking a protein shake or carnation instant breakfast drink too when I do not feel like eating. For some reason though I haven't lost any weight, even though I don't feel like I eat much. I will be glad when the holidays are over as I think there is stress associated with them, which of course makes pots symptoms worse. I do enjoy the music and the tree. Hope you will have a day when a meal tastes good to you.
  8. I have been on Remeron for 6 years or more. I was prescribed it for depression and anxiety. I started with pots about a year and a half ago. I can only take brand name or the generic from mylan company. Other generic brands make me feel much worse with my pots symptoms, and the whole pots thing started at the same time I started taking Remeron and Buspar from a different generic company. Maybe coinsidence, maybe not.The pots problem did not go away when I changed back to the generic I had been used to, but I did think I felt some better. I also am afraid of most all meds, but I am also afraid to go without them, so at this point I am trying to trust my doctors. Good luck. I do believe the Remeron has helped my depression.
  9. Thanks for all the info. It is a bit discouraging to know that it is permanent. It is reassuring to know it will not make my eyesight any worse. My eye is sensitive to light because of it staying dilated all the time.
  10. I thought I read somewhere that 3 percent of pots pts. have adies pupil, but I do not see anyone on the website here mention it much. Does anyone else have it and what do you experience? I have it in my left eye so that pupil stays dialated and does not respond much if at all to light. I also notice my vision is worse in that eye. I have been to an eye dr. for diagnosis, but he acted like there was really nothing to do.
  11. I have been for a total of three cranial manipulation appts and felt worse as I said the first, second one not quite as bad, but the day I was scheduled for my third one I was so dizzy and felt like I would pass out the whole day. My daughter drove me to the appt and I immediately felt better after.That was on Monday. Today is Thursday Nov.12 and I felt not too bad, but not good. He really seems to know what he is doing, and Iam due to go back again on monday. It seems like it is a process and different practitioners seem to do a different time schedule, or maybe it depends on the pt. too. So I started on a Thurs. and then Mon and Thus the next week, now trying to go til next Mon. He is able to press on my neck and head very gently and bring on the trembling and nausea symptoms, and if he brings on those symptoms he says he needs to adjust more slowly and somehow differenty, but it worked short term. Dr. Goodkin said it could take 6 months to see improvement. I feel like this could be a break through in pots treatment. Obviously it is not widely used by what I see on the website, but I am hopeful.
  12. I am sooooo very happy for you. Yes, you did put your time in being sick with this for three years. I did recently read that many people improve after several years, so you are one of the lucky ones. Don't feel guilty sharing your good news, it is good to know that just maybe some of us others will be able to improve as well, with time.
  13. I can totally relate and glad you felt you could vent. If you are anything like me when I feel bad it is hard to think that tomorrow may be better. I understand and wish I could wave my "magic wand" for all of us to have a cure and feel better. So sorry you are feeling worse and hope it will pass for you to have some good hours or good days. I feel like I spend half my life in bed now too.Blessings and hugs to you!
  14. I am on Florinef 0.1 mg daily and feel like it does help me. I was ordered Sudafed for a different reason, ear congestion,but I did not notice it helping my pots symptoms any. I did not use many doses, but did not notice any increased tachycardia.
  15. I think we learn our bodies best. I would give it a few days or even a week to see if you get used to it, but I think you will know. I could not tolerate beta blocker that I am on twice a day because it kept me awake. After 3 bad nights of no sleep when I had been sleeping pretty well with Restoril I knew it was the med. Beta blockers are famous for making one feel dragging as you put it.
  16. I don't understand everything about your theory, but yes, dr. just found out my ferritin level was low 7. Norm 10-291, but I thought he said he doesn't like to see it less than 40. I am not sure about the red blood cell count. I often feel like I can't breathe and like the fan on or nice cool or cold outside air.
  17. I also would be glad to help. E mail me directions for size of square etc. to superplanner@msn.com and where to mail it to. I think it is a lovely idea.
  18. I also have fibromyalgia. Diagnosed with it first because of insomnia and pain in shoulders and back, hip, and neck. The pots symptoms, tachy and extreme fatique came a few years later. I am currently being treated by an osteopathic dr. who describes many areas of tightness . Iwonder if this tightness and restrictions caused the pots symptoms if that makes sense. Article very interesting. Also have read I believe if on improves pots symptoms, fibromyalgia symptoms improve. Sorry for the typos. I think I am tired.
  19. Dear HoudiniCat, Feeling drunk or hungover is a good way to describe it. I am going to try to give it a several months if I can. This osteopath is very familiar with cranial manipulation but of course had never heard of pots.My husband and good friend are actually encouraging me to stick with it, because it is so hard to do something that makes me feel worse. I am off today, but have to work the weekend, so I am hoping I can tough it out. I thought maybe the theory was to go more often in the beginning to help the body to adjust to the changes, because he said if I feel better after tx, we might reduce to once a wk. and so on. Sometimes I wonder if I should just be happy where I was at, because at least I can work part time, but I want to be the best I can be and lead as normal life as possible and I'm not there, that's for sure.Thanks again for your helpful info. Having this web site for support and info has been a awesome.
  20. Thank you for your encouragement. I am almost afraid of meds, although I do feel like if Midodrine was going to help at all I might have noticed in 5 days. I take it you had the cranial ostopathy. The kind of bad I am feeling today is trembly if up much at all and more lethargic than usual. Did you experience any of that? I do think I understand what you mean about the meds.Blessings to you.
  21. I had my appt with Dr. Goodkin last week and really liked him. He added Midodrine to my meds but I felt bad for 5 days in a row after starting it which was unusual for me. I have bad days, but had not been having that bad for so long, so I called him and he said okay stop it even though he did not think it was the cause. I also started Cranial manipulation therapy at his suggestion and he believes that may be what is making me feel more tired , nauseated, dizzy and lightheaded. I go back to Dr. Goodkin in January. It was interesting to read it took someone else 2 years with Dr. Goodkin to tweak meds and even go off some meds. I want to ask next appt how to know when to try going off meds. So far the Bystolic and Florinef have been the best combo for me.
  22. Wanted to let everyone know how the cranial manipulation therapy is going. Dr. goodkin did say I may feel worse before better and he is right. I feel less functional now, but I have only been twice, and the second time was not as bad as the first. It is relaxing during the treatment, like a gentle massage, but after I have felt very tired, nausea and more dizzy and lightheaded. I went Mon and Thurs of this week and am to go back again this coming Mon. Hopefully each time will be better. The first eve after tx, I had trembling and cring spells. This morning after yesterday being a tx day I have felt more chest heaviness and a "fluttering" feeling with my heart. It is hard to stick with something that makes you feel worse, but I do want to give it a chance. Anybody else out there who has this experience?
  23. I ened up calling my dr. and while he did not think the Midodrine was making feel worse, he did tell me to go ahead and stop it since it was obviously not helping me.
  24. Thanks for your info and uplifting replies. I am feeling better today and due for my 2nd cranial manipulation treatment. I also talked to my dr and we decided to stop the Midodrine.
  25. I am very happy for you and thanks for sharing to give us all some hope and encouragement.
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