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Everything posted by KellyErnst

  1. Logan, The Dr. Fouad at the Syncope Clinic @ the Cleveland Clinic in Cleveland, OH perform my TTT. I don't know about her experience with adolesants. Her and her staff are very good at the dx testing, however for follow-up care I have decided not to use them. I am going to Dr. Grubb in Toledo, OH in April. I believe he is about the best Dr in my area for POTS. From other posts I have read on this sight he does treat adolesant patients. GOOD LUCK!
  2. Had appt yesterday with my Neuro @ CCF. She examined me and reviewed my medications. We are adding 1/2 tab of Lopressor in the afternoon to even out HR and hopefully keep afternoon headache away. I will be returning to work on Monday for 4 hours per day. I plan to go in at 10:00 am work until noon take my hour break for lunch and then work from 1:00 to 3:00 pm. I will then be able to get home and rest a short while before getting dinner ready. I am excited to return to work!!! I am keeping a very positive attitude that everything will go well. My Dr thinks I just need to ease back int
  3. CONGRATULATIONS - I hope your pregnancy goes very well and you are blessed with a beautiful healthy baby. Kel
  4. Dayna, I am fairlly new with this conditon, but I have experienced these pains also. I believe some of my pain is related to the Florinef which depletes potassium. Low potassium can lead to muscle pain therefore I have been having my potassium level checked (simple lab work - blood test) I also have been taking an OTC potassium supplement. I have also started taking Glucosamine Chondroitin & MSM (Combination supplement) for join health. This too has also seemed to help me. I learned of this through a previous post. Sometimes I try to not over analyze the aches and pains, I am 42 a
  5. Through this condition I have thought that a dog would be nice to have. Don't know if I would be able to convince my husband. But, if I could I would want to adopt one of the racing Grey Hounds. I had seen them at a near by mall and have known people who have adopted them and everyone says they make wonderful pets. Glad Donnie has found a good home and I am sure he has done you much good also.
  6. I'm from Ohio have spent my whole life around Lima area where this is a big refinery and chemical plant. Also I have been to Cedar Point and Put-N-Bay lots of times. My brother now lives in PA and has had MS for over 8 years. Seems like there must be some kind of connection with these kinds of illnesses and where we live.
  7. Don't know if this will help you but I had leg pain at night. My neuro from CCF suggested with tilt the head of the bed - making the bed slant downward. This almost seems backwards but it has helped my legs greatly when I sleep. The bed looks actually greatly slanted but when you lay down you really don't notice it. We have a king size bed so but my side and my husbands side is slanted, but it is not affecting his sleeping. One caution though be sure to support middle of bed frame as to not crack it.
  8. You are very courageous to keep teaching and I know how difficult it is to be apart from your daughter. My daughter is 15 and she is leaving me as a teenager in different was than a toddler but the feeling for a mother are the same. But everyday when she share her life experiences with me I am glad that I am setting her free to see the world and I reminded that I have done a wonderful job raising her. I try everyone to give myself positive rewards and keep thinking that I will control and beat this condition. Please know I am thinking of you and sending positive thoughts your way. Put you
  9. Have you inquired if any of the hotels have a special rate for the institute? I know when I go to CCF the hotels have a special rate for patients. But I know with tax and all my room was $100 in Cleveland, so $100 is probably not bad for NY - but I know that is a lot of money. As an accountant I will remind you that your travel and lodging for medical treatment may be deductible if you reach specific amounts and are able to itemize - so keep your receipts
  10. I have gotten up early the last two mornings and actually I feel better. I believe I am not as dehydrated and my muscle aren't as sore as when I lay in bed for 12 hours. It's hard but I am going to try to keep this up and hopefully recondition my body. Just wanted to share my experience. If you are having trouble - you may try to force yourself to get up - like I said it is not easy but once I am up - eat and take shower I do pretty well. Have to take little breaks and rest throughout day and I am pretty tired by 10:00 p.m. but at least I feel I am getting back to some normal being. Kel
  11. Sara, I had a lot of troule with brain fog. When do you take your lopressor - I only take mine at night. Also, I take provigal which has seemed to help with brain fog. I belief also the florinef has helped some too. As for the hair falling out I don't think that is happening to me - but I also take a prenatal vit. These are just suggestions you might try. I did a post on brain fog just a few weeks ago - you may want to look back at it for other posts. Good Luck Kel
  12. Suzanne, I have learned to let somethings go - when it comes to cleaning - and that was hard for me because I used to clean all the time and I am a neat freak. I've also learned it's OK to ask for help. I just told my husband tonight that the carpets need cleaned. I know he won't come home from work tomorrow and clean the carpets, but he will get to them as soon as he can - and that OK. Maybe you can focus on what you have to get done and possibly you can add one thing a day. I know this is hard - I try to look at what I did accomplish and not on what I didn't accomplish. Boy therapy mu
  13. Last Friday night my husband and I went with our neighbors to see a comedian. We had a great time and felt so good to forget my illness for awhile and laugh. It was relaxing - got to sit down the whole time the venue was smoke free and I had a NA beer - didn't taste to bad - I enjoyed myself and time with others. I know the losing a social life is not good. Just a suggestion !!! My personal montra is Live Well, Love much and Laugh Often!!! Kel
  14. I just cannot seem to pull myself out of bed before 10:00 a.m. - Used to be up at 6:00 a.m. everyday and didn't sit down until 10:00 p.m. What can I do to help this symptom - wondering if it's CFS - what is the difference between POTS and CFS??? Kel
  15. No I am not taking a Zinc supplement - but my maiden name was Zink - maybe that is inteferring - have to find the humor in being sick. Kel
  16. My potassium level was only check when I started florinef - I knew that could be a side effect and they did not check again after starting meds. My Dr is currently on vacation but I can reach her through her office - I will check with her on monday. Thanks for your helpful response. Kel
  17. Has anyone been told they are copper deficient. I am waiting on lab results from 24 Hr urine test to see if my boby is not absorbing copper correctly. Previous test have shown I am copper deficient so I have been taking a copper supplement for months and repeated lab test still show copper deficiency. Kel
  18. Took myself of Florinef developed severe body ache all over - first cut dose in half and body ache decreased but did not go away. Then quit taking Florinef all together. I am now taking provigal, lexapro, remeron, prental vitamin and of course lots of salt and fluids. After stopping florinef I am more fatigued and seem to have some of the brain fog back. Wondering if Midodrine would help me - also wondering if remeron is causing more problems then it is doing me good. Any comments on how any of these medications have helped or not helped would be great - trying so hard to get symptoms und
  19. I've always wanted to go to Australie anyways. Now I have a really good reason to go - thanks for sharing this wonderful news and as others have said keep us posted on any progress on this study. Kel
  20. Getting most of my symptoms under control. Have less fatigue, blood pressure seems stablized, less brain fog. But now seem to have terrible pain in shoulders and neck along with headache and general acheyness all over. Have tried heat and ice and tylenol but not much relief felt. Currently taking florinef, provigil, lopressor, lexapor, remeron, B-12, prenatal vit. salt tabs along with lots of H2O and Gatorade. Any suggestions ????????
  21. Would really like to hear from someone who has their POTS under control and is working. My goal is to return to work fulltime. I know I will have to start out slow and build up until I reach fulltime again. Please share your experience with me. Kel
  22. Just a questions - not that I'm an alcoholic or have to drink but I was told to avoid alcohol. Before Dx I was a social drinker. One drink now and then with the neighbors on the patio or a beer when we went out for dinner, drank at party's, holidays, special occasions - that type of drinker. Just wondering what others think??? I have seen reference to going out to a bar (didn't indicate beverage drank) and someone list red wine in treatment. Just feel like I might enjoy a drink sometime but scared to have one. Party Woman (NOT) Kel
  23. Well as many of you suggested from my post on brainfog my Dr was willing to try me on provigil. I am hoping this will help with the fatigue I have left and clear my head. I had been avoiding caffeine but from previous reply tried some this morning and it did seem to help. I am convinced we will find the right regiment for me and I will get this POTS stuff under control. I will not give into it. If nothing else works my positive attitude will knock it for a good one. Kel
  24. Still have trouble with brain fog - inability to concentrate. Had Dr's. appt. today and she is going to research if any meds are helpful with this sysmptom. I of course take lots of salt and fluids (H20 & Gatorade) lexapro, florinef and lopressor and prental vitamin Just wondering if anyone else has any suggestions for this symptom? Thanks you suggestions are always greatly appreciated. Kel
  25. Found new Dr in my area that has one other POTS patient and has treated other POTS patients in the past. Really liked her she changed meds, amount and when I take them. Has order lab work to follow up side effects of meds and is seeing me back in one week. She has also indicated that she is only a phone call away. How reassuring. I I have actually felt like my old self again for the last three days - I am hoping to continue to get better. I have some much more energy do not have that fatigued feeling all of the time. Some brain fog at times but not near like the last four months. I fe
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