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

Ling, I am so very happy for you! Keep us posted on how you are doing and if it is twins. I have twins and it is wonderful! Congratulations.

Paige, Hang in there and I will be sending warm thoughts your way. We are all here for you. Susan

Sophia, Thanks for the information, I actually saw Dr. Hain who wrote the article, here in Chicago at Northwestern. CLeveland Clinic finally just called me back. They said this is most likely due to the extreme postions they had me in on Tuesday. Their advise is to continue the exercises and wait it out.....I had the Epley manuever done a while back and felt dizzy for a month afterwards. I cannot tell you how frusterating this is. I was feeling the best I had felt in years and now I am back to nonfunctioning. I will try some of those exercises you sent and see what that will do. I think those **** ear crystals are just floating around and will not settle on a place to lay. I asked the nurse if there was something I could take besides dramamine and she was going to get back to me......that will be another two days I am sure. Thanks for responding, I feel fortunate to have this site to vent and to receive such great advise and support.

Hi all, I am desperate and hope you can help. I just got back from The Cleveland Clinic on Tuesday where I met with Dr. Fouad for my POTS and then had a follow up with DR. Cherian in the center for vestibular and balance disorders. I was fine going into these appointments but coming home is another story. Dr. Cherian did a quick procedure called particle repostioning therapy for mild BPPV. As I left the office to head to the airport I felt a little "off" but okay. When I got home I was instructed to lay upright for 3 nights. When I awoke Wednesday morning I was EXTREMELY dizzy and nauseas. I have called the clinic 7 times and still as of this morning, not heard one thing back. I am told he has the message and a nurse will call me back. As of 10 minutes ago I called to say that this is unacceptable. They said someone would call me back and to be patient????? I have not felt this bad in 2 years. I have my Pots under control to where I can live as normally as possible for people who suffer with pots. The BPPV has not really even been much of an issue and now this spinning out of control is horrible and I feel I have no where to go........ Thank you for reading this and if there is anything you have all done that may help please let me know. Also, Dr. Cherian has me doing at home therapy the past two nights that involves a vibrating massager over the ear while the right ear in down on the bed. I do this for 5 minutes, then rest there for 15 and sit still for 45 minutes. I have 6 year old ACTIVE boys and have a hard time sitting still to do this, but I have. I am so much worse than I was went to Cleveland. I now wish I never went. Please Help!! Susan

For me also after pregnancy. I had a bad virus 2 months after delivering my twins and started pots symptoms immediately. I was not offically diagnosed with pots until 4 years later. I agree that I am at my worst right before my period.

Good for you Dayna. I am so glad to hear that you worked out a way for this to work. I know there is still going to be a lot of running around for you with the kids but try to take it easy when you can especially on the weekends. I had my twins in preschool the past two years and had to deal with all the moms wanting to do playdates. I agreed always but then stressed about explaining my condition when the time came for the playdate at my house. I told the moms prior to their child coming here and although they had no clue what pots was, they were compationate toward the situation. After the playdate was over, I always pushed for some good "quiet time" to regroup and get thru the rest of the day. I wish you the best and admire you for doing what you are doing. Susan

I had a hard time weaning off Florinef but I am now completely off of it. I definately had to take it slow and tweak the weaning schedule a couple of times with my doctors. Do not try to rush it and do not expect miracles in the beginning. I actually felt worse, I hate to say that, for awhile. The slow wean I was on was one tab a day one last week, then half tab for 2 weeks, 1/4 for 2 weeks then, 1/4 every other day. It finally worked but it is important to stay hydrated, increase your salt and wear those lovely compression hose. It is not easy and if you cannot do it right away then don't. Take your time and best of luck to you always.

Congratulations!!! I am so happy that everything is going well for you. I cannot give you any advise on what to expect with your POTS and pregnancy. I developed POTS after my twins were born. I just want to send my best wishes to you and hopes that you continue feeling so good.

I have experienced severe neck pain in the past also. I finally went to a physical therapist who specialized in head and neck therapy. I had very good results after the first few visits. I ended up sticking with it for a couple of months and it paid off for me. My neck pain and movement was worse on my left side. I had trouble driving since it was hard for me to switch lanes and look over my shoulder. I am 90 percent better now. I do not know if therapy is an option for you but it did work for me. I have not experienced the shakes like you have, that must be scary. I hope you are feeling better soon.

Nina, I know how it is when you feel your doctors are bouncing you back and forth. I hope you start to feel better soon. Your dose must have been pretty high since it was to last you all month. I don't know if it is better to go slowly everyday or not. I acutally was on lupron pre-pots and tolerated it okay minus the hot flashes. This time it is harder on my body, thanks to the pots. I am only on it for 5 weeks total and hope it gets better soon. Good luck with school and everything you are going thru. Susan