ChiariMSwithPOTS

I'm so sorry about the passing of your grandfather. You're in my thoughts.

Hi, I also have BPPV, which has been flared up since May. I haven't had the chance to go in to get the Epley done. It does make me much dizzier when I do it, but if I go for the Epley like 2 or 3 times that's when it fixes itself. I still have to do another dental surgery and that's what brought it on in the first place, so I dont' want to do the Epley and have to go back for another one. So I'm waiting. But, God it ***** big time. Hang in there.

Hey all, hey Taylortot, Thanks for the post. I also get the same thing. I describe it as cramps, but basically it's the same sensation of "squeezing." It's really irritating. I'm just trying to exercise my arms as much as I can. Touching my hands to my shoulders and then down, like I'm making a muscle....keep the blood pumping.

My thoughts are with you. Take good care. Hospital=Heal.

Hi, I have bad reflux disease, so my teeth are weak and have a lot of cavities, but I've got them all taken care of except for 3 teeth I think. I have to have dental surgery every year, sometimes twice a year. It really *****. I try to take care of my teeth as best I can. That's all you can do. Good luck hon.

Hi all, Pooh - I am still waiting on my thyroid test. And yeah I wonder if I'm not getting enough potassium. Jamie - Great ideas for the oils. I'll definitely find them at my Natural Foods store. Morgan - I'll have to get my potassium checked. And my MS doctor the other day things it might be from the MS, either that or the phlebitis. But doesn't want to put me on another drug just yet. Rita - Tonic water, eh? Hey it's worth a shot. I get the tingling as well. Briarrose - I hate when people say, "live with it." I'm a fighter I don't want to give up. Sorry that nothing seems to help. blackwolf - I also eat a banana every day. I'll keep doing the stretching. Thanks.

You wrote -- "I was also wondering if a city like boston would be a bit more threatening if i happend to faint or get dizzy compaired to a College town, i am not sure if attitudes towards people change much from place to place." No hon, Boston is a great place. We are really friendly. People are always willing to help you out. You would love Boston College. It has a great campus. And the train is like 10 feet from the campus. Not a lot of walking there. Good luck in switching, wherever you go.

Thanks, Corina.

1. Name - KLS 2. Age - 29 3. Dx - POTS (also have MS, Arnold Chiari Malformation, EDS, Celiac Disease, BPPV, Asthma) 4. Age at dx. - 29 5. Where you live - Boston, MA 6. Symptoms at worst - Tachy was up to 150+ - Blood pressure 160/110 at worst 7. Symptoms at best - Normal heart rate and blood pressure was beautiful 8. Medications/treatments, etc. that didn't work for you - Atenolol 9. Medications/treatments, etc., that do work for you - Clonidine (as far as lowering my HR and BP), but had other physical complications from it even though it worked. So far so good on the Mestinon. Gatorade helps.

Hi, For me, I've had some positive outcomes from it, and also negative outcomes. On the positive side, my heart rate really calmed down and my blood pressure was beautiful. As far as negative goes, I was more anxious and cried at the drop of a hat, so it messed with my emotions. And just recently, my POTS doc is weaning me off of it because it may have cause my phlebitis, because it started at the same time. But it's just a hunch. I'd say it's worth a try. See how you do.

Hi again everyone, All of your responses have really lifted my spirits and have reassured me that I'm not being ignored or dealing with clique members. Sorry I made that assumption. It's just happened in the past. I'm sorry I haven't responded sooner, but the phlebitis has kept me off the computer. I have to constantly keep moving my legs because they hurt so much. My POTS doctor is weaning me off Clonidine because I got the phlebitis at the same time I started the Clonidine. It's possible there's a connection, but I'm not sure. Thank you again for all of your responses. It's heartwarming.

Hi all, Thank you for replying to my post. I'm sorry I've been AWOL, but the phlebitis has kept me from sitting very long. I'm still having problems with it. I see the doctor again on Friday to check up on it. I just wish I knew the cause. I spoke with my POTS doctor and he's weening me off Clonidine, because it came on at the same time as my being on the Clonidine. So it's possible there is a conenction. Thanks again for posting.

Hi all, I am quite frustrated about the lack of responses that I'm getting on my posts. My last post hasn't gotten anny responses at all. I am so upset that I'm not getting anny feedback. I know that there's people on the boards that have gone through the same thing that I have. And yet no responses, even though it's been read a lot. -- I have a feeling that this is happening because I'm new. And that happens all too often on boards. People bond with members, and quite often new members are often ignored because they're not known. But it's the new people that need the most help. And if it's not because of being new, just please take the time to answer posts. We all know how much it means to us when we get feedback. Post to others the way we would want people to post to us. OK? Thanks for listening.

Actually I was referring to the pains in her side, Mighty.

Radha, So sorry you're in the same boat as so many of us. It is really painful. I'm sitting here and my right calf is hurt. Persephone, Thanks for the description. I was wondering myself. I also have EDS. It makes sense now that you've explained it.

Yup, I did 5 measley minutes on the treadmill, 4-4 1/2 mins into it. I got chest pain. I don't bloody see how I'm going to get in shape with this happening. And if I don't exercise, I'll just keep getting phlebitis and it's a horrible cycle!

Hey all, I just got back from my PCP's covering doc. And he says I have a case of phlebitis. Does annyone else get this because of blood pooling or inactivity? He thinks it could be both. I was scared to exercise with POTS but I know I'm going to have to, especially walking. I'll just take it slower. Thanks for the input in advance. I'm off to my treadmill..... KLS Boston, MA

Hey all, Does annyone get cramps or pains in their body, like in the arms, legs, wrists. I don't want to think I'm that grossely inactive that my circulation is bad. I also have Multiple Sclerosis and Chiari Malformation. So I don't want to blame it on that before I get an idea from this group. KLS Boston, MA

Hey all, Thanks for replying. It's good to know I'm not alone. P.S. Thanks for the tip on the Adenosine!!! Good lord! KLS Boston, MA

Thank you both for responding. This helps very much. Both my questions were answered. KLS Boston, MA

I got my report back from my doctor about my test results. My skin biopsies showed damage to the autonomic nerves. But what does Low Coristol mean? What are the symptoms, etc? And what about Low Blood Volume? I forgot to ask my doc to elaborate. I was in a fog. Thanks. KLS Boston, MA

Does annyone get like a "skip/shock" feeling when laughing and coughing? And I know that when you sneeze, your heart can stop for a sec. After I sneeze, I get a flutter of tachy for a second. Annyone else get this? KLS Boston, MA

Please, please, please, be careful! I was almost, and I mean almost as in like 99% almost was paralyzed from having a neck adjustment. KLS Boston, MA

I'm very sensitive to meds. Allergic. Need less medicine to do the work, etc. KLS Boston, MA

I have loads of stomach problems - acid reflux, motility dysfunction (on liquids/baby food), gas (like a trucker), lactose intolerance, Celiac Disease, etc. I used to love love love dairy, but now I've cut down, with milk, because of asthma. So I would cut down and see how you feel. Everyone's different. KLS Boston, MA