KellyErnst

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!

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 into it slowly don't rush it and overdue. I want to thank everyone on the forum for sharing information with me. Through you knowledge I have been able to better understand and control this condition and gain my life back. I only hope I will be able to help others here they way I have been helped. The most important thing is to stay positive and don't give up hope.

CONGRATULATIONS - I hope your pregnancy goes very well and you are blessed with a beautiful healthy baby. Kel

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 and try to belief somethings are just my body getting older. Kelly

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.

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.

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.

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 your net out and catch them. Kel

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

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

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

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 must really be working for me I sound just like my therapist. If you can't make it for plans that have been made thats OK - but sometimes I find I need to push myself and try something and I usually surprise myself and do fine and feel glad that I went ahead with my plans. But this might not be possible for you. Just wanted to let you know you are not alone - I hope tomorrow is better for you Kel

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

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

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