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Yes, Naomi. Thanks. It's not as if the room is moving...I am. I am rocking and bobbing, not spinning, like on a boat. It has been nonstop for 4 months. I belong to a benzo withdrawal group, and some there get this also. The central nervous system is the common denominator. I pray for this to stop as I'm running out of the ability to handle everything. I feel like I'm being tortured in my body.

Hi Dani, Glad to know you aren't taking them regularly. No, it's bad. Worse since the detox. I do have POTS. Whether it will improve or not after I get off remains to be seen. Between withdrawal, POTS, and the possible rocking syndrome, I feel like I'm hanging by a thread. I was ballroom dancing last year, and now I don't leave my home except for dr's appointments. The POTS and rocking started after the failed detox. It was the trauma I think. I was on less than the equivelant of 1/2 mg of klonopin. Some people think theat being on a small amount makes a difference, but once it has you, the amount is insignificant. And the withdrawal symptoms are burning, twitching, muscle weakness and pain, insomnia, intolerance to light and noise, tachycardia and much more. You can see how it overlaps with many of the same POTS symptoms and many other diseases. It is rarely diagnosed for what it is. Sound too familiar? Just don't want to see anyone go from the frying pan into the fire. Dr Grubb's assistant told me they will not prescribe benzos for POTS as they make you toxic. She is correct. I hope you sleep well.

Dani, Do not do klonopin. It is a benzodiazapine...the most addictive, harder to get off of than heroin, drug class on the market. POTS is new to me. Benzos I am an expert at. That's how I ended up with POTS. And many people in benzo withdrawal, which can last for years, get the movement we are experiencing. I was put on benzos for restless legs syndrome many years ago. I never abused it or upped the dose. Tolerance set in and I wanted off. It is a **** you cannot describe. So I went to detox in Mar of this year and had a toxic reaction to a drug used and ended up in the ER where they gave me benzos. I now have to taper from the benzo as they believe it is the factor in my POTS. Between that and POTS and the movement of rocking and bobbing, I am in a **** I would not wish on anyone. Stay away from benzos, please. Go to benzofreedom.org and read some of their stories.

I agree. It does seem like a bad joke...one that is horrible. How much os one expected to take? I wondered why riding in the car felt better also. I am at the end of my rope.

I have had this since July. I have asked neurologists, ENT's, and the POTS cardiologists. No one has an answer. I can say it is driving me mad.

Sorry, I hit post too soon. Anyway I got worse and now I have horrid gait problems and my vision is so blurry. I can't see well or get around. I feel so hopeless as I have searched through this forum and don't see these symptoms on here. I don't think I can do this much longer. I'm so depressed and tired of almost 2 yrs of drs and tests. I don't want to be a burden to my family. I fear it is the MSA. Thank all of you for responding.

I have this horrid feeling that POTS isn't the big problem. I fear it is much worse. Mine didn't start as tachycardia or low BP. Mine started out in June of 2010 with a sudden loss of cordination and balance. It happened just from getting up from the lunch table. I went through test after test.

I'm so trying to be hopeful. I'm going through benzo withdrawal at the same time. It's hard to know what is from what. I just feel so sad and hopeless all of the time. The Holidays are bringing on greater depression as I am basically unable to function and won't be able to shop, decorate, cook, or enjoy my family. This is the first year for me with this. I just am in shock. Hugs to all, Julie

Thanks to all of you for your responses. It's such a hard journey for us. I developed the rocking feeling before I had a diagnosis of POTS and was taking in all of the salt. I so want it to go away. I want to live in my dreams. They are so much better than my reality. Thanks, Julie

It seems everyone is told they will feel better soon. I am new here, but I'm feeling worse all of the time. I too, am so sick of it. I grieve everyday for the loss of my life. Prayers for all of us, Julie

I'm new on here. I cry constantly. I don't know how to get out of this feeling of enough. First, I've been battling getting off of benzos for so long. Not from recreational use, but from a stupid Dr that put me on them for RLS. That has been painful and taken everything in me. Now, POTS? How much is a person supposed to take? I get to sleep only to awaken in a few hours with my heart pounding and I'm so hot but can't sweat. I have to sleep with an icepack. Then I'm awake and exhausted. Still, I try to ride my bike for 40 or 50 min every other day. How can it be that I can ride my bike or feel strong in my legs till my feet hit the floor and then everything is crazy just to get across the room? This bobbing/rocking feeling is driving me mad. It doesn't matter if my Bp and pulse are high or low or normal....it's there all of the time. I want it to end so badly. My vision in my left eye is funky. So along with the bobbing, reading is out. My pulse and BP are all over the place. I eat lots of salt and drink plenty of fluids. I feel like I'm crazy. My husband is so worried about my state of mind. So am I. I'm afraid to have sex as to what will happen to me. I know I have POTS, and am low in blood volume and have 40% pooling. I have no idea what the POTS is from or how to treat it. Cleveland Clinic diagnosed me and told me to increase my fluids and salt and exercise. Beverly at Dr. Grubb's was going to put me on Florinef, but due to previous eye pressure problems, told me no. So I'm on no meds. My blood pressure can get so low I'm terrified. My legs feel like weak heavy uncoordinated lead. I have to have someone here everyday. I feel so useless. I was used to helping others and doing so much with my kids and granddaughter. Now, it's either bed, or the blue recliner to keep my feet up to stop pooling. In my dreams, I am me...laughing, dancing, doing all kinds of activities. When I wake up, I just want to go back to sleep. I start crying then. I am worn out and pray so much. I have been fighting the benzo battle for years and mow POTS. I don't think I have anymore fight in me. I admire all of you that have been doing this for so long and keep going. Dear God, I don't know what to do. Thanks for reading this. Julie

Hi, Yes, unfortunately, magnesium lowers my BP. Julie

Hi, I am new here and don't know how to private message. I would love to speak with someone. I feel so alone and it's so scary. Thanks, Julie

Thanks for all of the advice. Yes, how right you are about coming off of benzos slowly. Benzos, I could write a book on. POTS is new. I don't have celiac. Been checked blood and biopsy. I do watch gluten, though. I have been a health fanatic with diet and staying fit for many years. I think that's why this has been such a shock. I was so healthy and had so much energy. I believe either the trauma from coming off of the benzos, or dental work, or mold exposure has caused my issues. Maybe all of them together. I try to take it day to day, but at 55, it's really hard to adapt to this. I feel like someone came in and robbed me of myself. Went and got full compression stockings today. They don't feel good. The fitter feels that thigh highs would provide as much compression and be more comfortable and easier to get on.

Never mind. I found info in the archives.

I've been submitted to do Dr. Levine's POTS study. Has anyone here done this and how did it turn out? Thanks, Julie

Thanks for the pep talk. God knows I need it. I'm going to post another question on the board.

Thanks everyone. I am really down and it helps to have people that understand. I miss so many things as I'm sure others do. Mostly, doing things with my granddaughter. The Holiday is when I did so much with her. I'm so heartbroken for her and me. And all of us. Issie, you see Dr. Grubb, also? Has he been helpful at all? I get the BP/pulse connection. It's just so weird to have it change so quickly for apparently no reason. I'm not on any meds except the stupid valium and tapering off of it is horrific. Thanks for the hugs.

I get so confused. My BP was so low for a while. It got down to 72/35 and my pulse was 100 sitting and would go to 150 upon standing. After increasing fluids and salt and the compression knee highs, my BP went up and my pulse was normal when sitting and didn't go nearly as high. Then last night out of nowhere my BP dropped and my pulse took off and won't calm down. It's hard to wake with this at 3:30 am and then not lie down as they tell me to stay up. I'm exhausted. You are correct. I have to taper again off of the drugs. It's a very painful, long process. It causes problems with the POTS. Thanks for answering. Julie

Hi Issie, No, that's part of what is so frustrating. No one has been able to give me a "type" of POTS. And shock is the word. I was told at the Cleveland Clinic to wear knee highs, which I got. Then Dr. Grubb's office told me to get the full compression hose. I am literally an invalid. It's odd, I can ride my exercise bike up to level 7 for 50 minutes, but I can't walk through my house without hanging on to something. I try to stay up. but I must sit. My back hurts so much from sitting. I'm housebound. I have learned a lot. I wish I could stop crying. I don't know what to do with my time as my brain is foggy, my vision shady, and I feel seasick all of the time. I'm usually a tough cookie, but between no sleep and the constant pounding heart with the rocking, I feel like I am not me anymore. I look in the mirror and I don't know who's looking back. I was used to helping our food pantries and toy drives at Christmas and I can't now. I feel lost.

I'm new here and newly diagnosed. I have a lot of muscle twitching/jerking and fingers and toes moving. I cannot take any magnesium as it lowers BP. My BP runs extremely low even w/lots of salt and fluids. I try 5HTP and organic lithium. Melatonin seems to help if I stay at a low dose, but it does seem to lower my BP and increase my pulse. I awoke last night witha pulse of 110 pounding. It usually lasts for a couple of hours, bit this episode is hanging on. Ugh. I'm so tired and can never sleep during the day. Be careful w/benzos everyone. You can develop tolerance and you won't know what is from POTS and what is from the benzo. Just speaking from experience.

Hi, I'm 55, soon to be 56 and have been diagnosed with POTS. I am still reeling. I am very confused and in double trouble. I was put on a benzodiazapine by an ignorant Dr. for restless legs syndrome 13 yrs ago. I had RLS most of my life, but a new Dr. decided to put me on it. I had no idea how addictive they were until I attempted to get off. The hardest drug in the world to get off of I'm told. Anyway, I was tapering for 2 yrs and doing well...ballroom dancing, political campaigning, and community work. I was very active and felt good. The first thing that happened was in June of 2010, I was almost off of the benzos, when after a dance class with my granddaughter, we went to lunch and I felt fine. I got up from the table and it felt as though my legs were made of lead and they did not want to go where I wanted them to. I spent the next 6 months having MRI's and many tests. I was told nothing could be found wrong, even at the Cleveland Clinic. I managed to keep busy, but my balance was off and I fell a couple of times. I had no tachycardia or bottoming out blood pressure. In Dec we went to Jamaica with friends and I was in the sun and hot tubs without any bigger problem other than the heavy legs and balance issues. I was getting very anxious as time went on and decided to go to a detox center in Mar of 2011 to get off of the benzo. I had a reaction to Dilantin, and ended up in the ER. I was weak and dehydrated and they put me back on benzos. I made it back to Ohio, home. I was very shaky and the low dose benzo didn't work well any longer. They then changed me to valium. I started having panic attacks and sometime during the early Summer, noticed my pulse was flying when I stood. I took my BP and was shocked how low it was. My GP and 2 cardiologists blew me off. I went to the Cleveland Clinic again in Aug to a cardiologist. Well, you know all of the tests that were ordered. I was told I have severe POTS with severe {40%} pooling. I am like I am drunk 24/7, I cannot stand more than 10 minutes and I cannot drive or shop at the store. I have spent the last 8 months almost entirely in my house. The worst thing is this rocking/bobbing feeling I have 24/7 as if I were on a raft on the ocean. It is maddening. I miss my granddaughter so much. I cry constantly. I don't know how to come to terms with this. I went to see Beverly, Dr. Grubb's asistant a few weeks ago. I make myself exercise but I feel I am getting worse. I could go for walks holding my husband's hand a couple of months ago and went to a movie the first of July. I didn't see the reddness in my legs like now. I have to get off of the benzos...again...because they think valium might be making it worse. I keep looking for a cause. Last night, out of nowhere I awokw with my pulse at 110 and the rocking/bobbing going crazy. Does anyone else have this feeling? I am sorry to go on. It's just that no one else gets it. They think I should be able to will my way through this but I can't. I feel so overwhelmed by the benzo problem and now POTS. I feel hopeless along with all of the other POTS symptoms and don't know how to make it through the Holidays. Thanks for listening. I appreciate any feedback..