Susan Lake

Hi, I am 37 and had a colonoscopy last year. They found severe colitis and diagnosed me with Chrons Disease which mostly means inflamation in and around the bowel. I have been on medication (sulfa drugs) and have been able to manage with it just fine. My symptoms were similar to you with the thought of anemia. The procedure is never fun but I feel definately needed to find an answer to all your questions. Good luck with everything.

Yes!! I too feel much better after exercise. I started by walking for about a half hour every other day to once a week kickboxing and pilates twice a week. It is hard to get going when you are feeling lousy but the results are quick and have helped me a ton. I think just getting the blood circulating is going to help. S.

I just had a colonoscopy 2 months ago. By far the worst part for me was the prep. I felt very dizzy and dehydrated from all of the night before stuff. The best advise, like many have mentioned is to get extra fluids right after the procedure. I had told my doctor about my pots prior and he was great about starting the IV fluids when we were finished. Good luck to you!!!

I have had the Epley manuever done before for the same problem. I did not have a good experience with it. I was feeling okay the day I went for a check up with my neurologist but he put those goggles on and said my "ear rocks" were floating and he wanted to reposition me to settle them. I ended up feeling just horrible when he was done. I felt that way for about 2 weeks after. He explained that it was like that while the ear rocks were still finding their way to settle. I was instructed to sleep upright for 5-7 days after the procedure as to not distrupt the process..... I know it has worked for MANY, I am just not one who felt that I really benefited. When I was having a good day I went in and then paid for it weeks after. Good Luck to you, I hope your experience is much different. Susan

Yes, I can certainly relate!! I will be feeling fine all morning then go to the salon and come home feeling horrible. I do think it is the head tilted back at the shampoo bowl. I have started to ask for a neck pad that actually allows your head to be more upright and use the foot stool at the same time. This has helped a bit. I have to get my hair colored every 6 weeks and know it would be green if I tried it at home. I agree that just telling the stylist that you have neck issues is easier than explaining the whole pots thing. If you only getting a cut then maybe shampooing at home would help. I thought going to the salon was supposed to be a relaxing treat?? I stress out so much that it is actually a chore!! Susan

Thank you for your responses. You are more helpful than the doctors. I am still having the same side effects with the sulfa drug. Morgan, thank you for the tip about trying asacol- without the sulfa. I am calling my doctor tomorrow. I don't think I have the allergic reaction, but I am just too frustrated with the fatigue, I cannot stand it. The thought of being on this drug for a year makes me sick!!! Thank you again- you are always so helpful. Susan

Hi, I had a colonoscopy done last month and they determined that I have colitis/ Crohns Disease. The doctor put me on Sulfasalzine 3000 mgs a day for 6-8 months minimum. I have noticed that my pots symptoms are much worse on this drug. I am extremely fatigued and more dizzy than normal. The only other drug that I take on a daily basis is Toprol XL. I have had a series of better days with my pots and now have reverted back since taking this drug. I spoke with my GI doctor about the sulfa drug ( he of course has no clue about POTS) and he said I have no other choice but to take it. My colitis was severe and not taking it could cause more problems. There is a list of side effects with Sulfa drugs and one is fatigue. I guess that is normal but for someone with POTS, it is much worse!!! If anyone has any experience with this drug, I would love to know if the symptoms lessen after a period of time. If anyone has any helpful tips and would SO appreciate it!!! Thank you to all who read this! Susan

It is a good idea to call your doctor and let them know you are planning a visit to the dentist. I am also on Toprol. I have MVP so my doctor wanted the dentist to give me an antibiotic 1 hour prior to any dental procedures. It may also help to let them know not to recline you back so far. My dentists office knows that about me and I think they dread it when I come...... Good luck, I am sure everything will go fine.

I am in Naperville, Illinois (outside of Chicago). Let me know, would love to be able to get together! Susan

I know that spinning feeling oh too well. I am sorry you are having such trouble. I spent over 5 years with an ENT who was sure this spinning stemed from a virus that attacked my inner ear and was sure I had BPPV. I went to physical therapy and did many manuevers such as the Epley to try to ease the sensation, this nver really helped (sometimes I think it made it worse). I had every inner ear test that could be done and they never found anything like menieres. Two years ago I went to the Cleveland Clinic and they diagnosed POTS and BPPV. I would say that I have that spinning sensation at least 3-4 times every two months. I have definatley found a correlation with that and my hormones. I wish I could offer advise but the best thing to do natuarlly is to try to lie or sit still and pray that is passes. I can have this feeling for up to week. Maybe try to sleep upright with your head propped and not on your side, I have found this to help. Occasionally, I will take a klonopin and this can help quiet what is going on. The only other med I am on is Toprol xl for the pots. I hope you are doing better today. There is some comfort to know you are not alone. Susan

I will be praying for your brother and his family. Our thoughts are with all of you!

I suffer from periods of vertigo and I also have pots. I think there must be a link between the two but I do not know. My vertigo did start after a long period of bed rest due to a pregnancy. I feel horribe when it hits like the room is spinning or I feel lopsided, pulling to my right side. The exercises I was given did help a bit in the long run but are not fun to do when you feel so bad and so dizzy. I found that after having a doctors manuever called the Epley I felt worse for several days. The idea here is to losen up the " ear rocks" that sit in the semicicular canals and reposition them. I feel it is very necessary to then sleep upright for 2-3 nights after so that there is enough time for them to fall where they need to. I also experience severe nausea with this which of course is never fun. I will have symptoms for days or weeks and then they will be gone for a month or so. I find that every other month the feelings trickle back, sometimes not very severe. I hope you can find some answers and please find some comfort that you are not alone when going thru all this. Take care of yourself and I hope you feel better soon. Susan

Good luck Haley. We will be anxious to hear what you find out! Susan

Thank you for all the replies. I have had a couple of good days and now I am back to the spins..... The doctors at the Cleveland CLinic did say that I would have some trouble with my balance for a couple of days or maybe even a few weeks. They gave me some Ativan and it helps a bit but makes me groggy of course. Today is a bad day, I am feeling it big time. I don't know if it is aggravated by the rainy day we are having here in Chicago. My husband and I are taking the kids to Disney World next week so I am praying it will be gone by then!? Thanks again for listening and I hope you are all doing okay.

Good luck in Cleveland. The doctors there diagnosed me a little over 2 years ago. I just got back from Cleveland and had my annual check up with Dr. Fouad. She will listen to you and do the appropriate testing but she is a bit difficult to understand. I wish you all the luck in the world, please let us know how it goes. Susan