Susan Lake

Nina, I am sorry you have been having such a hard time. I am on lupron right now and have only been on it for a week. The hot flashes are killing me and I also feel like my symptoms are worse overall. I keep waiting for my body to just get used to the new medication but if you read about the side effects it is no wonder that we are feeling the way we do. Can I ask how much you are/were taking per day and for how long. I am on just 10 units/ 1cc everyday. I have too experienced the migraines, what fun! I am also much more lightheaded than usual. I am wearing the compression hose and drinking my water and gatorade like crazy. I am glad you were able to take your vacation. Hang in there, I will be thinking about you! Susan

Congrats to all of you!!! He is simply beautiful. Glad to hear you are well, take care of yourself too mommy. Susan

Ernie, I am so very sorry to hear about the loss of your sister. Whatever you decide to do is the right decision. Your sister would understand if you cannot make the trip, please know that. I agree that sometimes your body will kick into gear during times like this and you may find you are able to do it. My prayers are with you and your family. Susan

I was diagnosed with Menieres in 2000. I gradually got much worse and went to the Cleveland Clinic in 2003. I did not have Menieres, I was diagnosed with POTS. I asked at the time if they were related and my cardio said no? I never had any hearing loss so it was hard to believe it was Menieres. As you know with Menieres the idea of treatment is much different. I was placed on diuretics for years with menieres and a 1500 mg or less a day of salt. Lots of water to flush out any salt. With POTS it is the opposite, lots of salt and NO diuretics. I think I got much worse during that time just with the low salt diet. I don't think that probably helped much!? I am sorry your having a hard time with your Menieres. Hope you find all the answers you are looking for. Susan

Congratulations on your wonderful news!!!! I have twin boys who are 5 years old. I love the fact that they are the best of friends. I am glad that you are feeling so good I hope this continues for you. What a dream to go to Disney and walk around and not get tired, good for you. Thanks for sharing your news. Best of luck to all of you! Susan

My thoughts are prayers are with you and your family. May you find that strength somewhere to help you cope during this difficult time. My sisters husbands brother has leukemia and is living with them now on hospice during his last days. May peace and love be with you at this time. Susan

Thank all of you for your helpful suggestions and kind words. I pray that my body will soon adapt to living without the drugs I have been on for so long. I will take it slow and keep close contact with my doctors. I will keep you posted! Blessings to all. Susan

I just wondered if any of you have tried to wean off klonopin before? There are several reason why I want to get off this drug but most importantly I would like to try and get pregnant and I know this is a dangerous drug to be on. I called the Cleveland Clinic and they gave me an ok to wean off my beta blocker, florinef and Klonopin. This is day three and I think what my body is missing is the klonopin. I have taken .5 mgs for 4 years and the weaning recommendation is to go to half tab once a day for a week then quarter tab for a week. Finally the last two weeks quarter tab every other. The decision to try and get pregnant was an easy one but I knew for health reasons I needed to taper off all meds. I feel horrible right now, like I could cry. I am so tired and weak I can barely get this out!! When I asked my cardiologist if she thought I was crazy to stop the meds in hopes of a pregnancy she said ultimately it is my decision but to take it slow. My health is obviously most important right now. My husband is afraid of this weaning process already since I could tell the difference by day two. I have healthy twin 5 year olds as a result of in-vitro fertilization. WE have 7 frozen embroys that we want to thaw and transfer back at least one if possible. My chance of success is only 20 percent. Am I crazy to go thru all of this weaning with such low odds of acheiving a pregnancy? I feel like I have to at least try. In the meantime I am hoping these symptoms will lessen as I get further into the tapering process. As of now I am dizzy, fatigued and my heart is racing. I am scared that this will never go away. Usually I would take my pills and be lightheaded but not to the point where I feel like I could drop at any second. That is how I feel now. If anyone has gone thru this tapering before please let me know what I can expect. I hope you all do not think I am crazy to stop treatment for this condition I have had that has changed my life for the past 5 years. I love my boys and want to have other children but wonder if this is fair to them. I have been able to go about my days with daily lightheadedness and some chest discomfort. They already know mommy is dizzy alot is it fair feel worse all at the sake of trying to have another child? Sorry this is long and rambling. I appreciate you reading this to the end.

James, I really can sympathize with what you were going through. A couple of years ago I was at a mall and started to have that spinning sensation along with loss of breath and chest pains. Before to long I left the mall walked to my car and called my husband to pick me up. While I was waiting I started to vomit and layed on the ground in the parking lot unable to get up. The security officers stoped to help but I told them not to move me. My husband arrived and I went to the ER. All they did at the hospital was to give me IV fluids and valium. Eventually I felt well enough to go home. With all that said, I avoid the mall and other places with crowds and escalators. It is a shame for many of us that we have had to change our ways of life. Not going to a mall is not a critical problem obviously but I am 35 years old and I am afraid what happened before will happen again. My heart goes out to you and everyone who deals with the symptoms that go along with POTS and OI> I will pray that one day we can all lead a normal life again. Susan

J- You really have been going thru alot. I think first and foremost your doctors need to all be on the same page. I agree that the medications you are taking need to be ok'ed with all three doctors. Sometimes the meds can make you feel worse. I have had that feeling like you that when I walk I feel slanted or tilted to my left side. My balance is almost always off. Please know you are not alone in the suffering of several symptoms of POTS. I have had to refer a physician to the web also regarding pots. I now see a specialist in the area of pots and at least I don't have to waste my time explaining what I think they should already know!! My heart goes out to you. Stay strong and know we are all here for you, anytime! Susan

I had the blood volume with hemodynamics done at Cleveland also w/ Dr. Fouad. I agree with Dizzy it is not painful but definately boring. I remembered that it took awhile. The nurses who perform the test are great. I do remember feeling very dizzy once we were done and I stood up, just the wonderful POTS I guess. Good Luck with the test.

April, Great news for you and your husband! I hope you are well, like everyone else can't wait to hear the little ones name. Susan

Hi Caitlin, I am new to the forum as well. I hope you find it as informative as I have. It is always nice to have the reassurance that you are not alone. Susan

Your attitude does not stink, chest pain is very real and aggravating. I agree that if this pain continues you may want to see a doctor. I have gone to the ER with horrible chest pain before and after the proper tests etc. the doctors usually tell me everything is fine. Sometimes that is the peace of mind I need when I feel so bad and scared. I have taken asprin when it starts and sometimes I get relief from that. I have twin 5 year old boys who are used to the drill when I feel dizzy or get the chest pains. It is hard when you want to take care of your kids and you are not feeling up to it. I put the boys in bed with me and let them pick out a movie and we lay together until the feeling passes. Hang in there and know you are not alone.

Patricia, I was told by my doctors that Chriopratic therapy may worsen my symptoms. I saw a chiroprator for a couple of months and my lightheadedness and dizziness were much more severe. I now go to physical therapy twice a week and have a therapist who specializes in head and neck issues. I have had positive results from this. It is not as drastic as chiropratic for me. I have better range and less symptoms since seeing this physical therapist. It may be something to look into. The doctors at Cleveland recommended my therapist after being diagnosed with POTS in November 2003. I hope you have some relief soon from your symptoms. Susan

Mindy, I am so happy that you received such good care at The Cleveland Clinic. I am a patient there also and have been very happy with the care I receive. I hope the blood clot will go away soon for you. Just curious, has anyone else gone off florinef? Dr. Fouad had me gradually go off it also. I am still tapering now to just a half tab every other day. I don't know at what point they want you to go off this drug but Mindy it looks like you are making progress. Good luck to you. Susan