dawn

Morgan, I'm so glad to hear he is going. And your sister coming, that is great!!!!!!!!!!!!!!!!!!! I think it's hard for them to understand that seeing them happy makes us happy. Sounds like it all worked out. You take good care of yourself. Rent some good movies and have pajama parties with your sister. If only we could drink wine Then it would be a real pajama party. Dawn

Morgan, That *****!!!!!! Do you do isometric exercises. My doctor had me start doing those about 10 years ago, especially right before I get vertical. I squeeze to the count of 10, release, then repeat about 5 times. I also do alot of calf stretches before I get up. I got an oxycycle for Christmas, you just set it in front of the couch and pedal, it has a motor so you really don't use much energy. You can have it go different speeds. I wonder if you would be able to do that. Maybe the PT has one. It's a little thing with a handle to carry, even the pedals fold up. I feel pathetic, I used to be able run 3 miles and now I pedal with a motor. Mayo always assured me that when you hit menopause you will feel better. NOT. I think of you often. Hugs Dawn PS How's the puppy?????????????????

Merry Christmas- May God Bless each and everyone of us real good. Dawn

Bamagirl, My understanding is that our systems randomly release large amounts of epinephrine & norepinehrine. This can sometimes be triggered by different things for some of us. Stress is a big trigger for me. Our bodies produce these hormones when we are sleeping that is why we feel so bad in the morning. Instead of our body eliminating them like it does in healthy persons, our systems just keep recirculating them. Epinephrine is adrenaline so it is normal for our blood pressure to go up. It's unpleasant. Some people have found relief with some of the SSRI's that are also norepinephrine reuptake inhibitors. I think celexa is as well as effexor. It's important to try not to compound the surges with panic (easier said than done). Good Luck & Merry Christmas, Dawn.

Morgan, Sorry you are going through such a rough time. I understand how you are feeling about your puppy. We have 2 dogs, Sammi is 15, I watch her struggle going up the steps and she can't hear as well but the thought of losing her is more than I can bear. On the positive side you can spend all your time with her and she doesn't have to be alone. She is getting lots of love and pets I bet I had a bulging disc a few years ago, physical therapy helped alot. (I was teaching CPR with another instuctor, I was demonstrating the heimlich on her she fell back and we landed on the floor). I tried a chiropractor with no relief. I took flexeril too. Do you like to read? I do, but usually end up watching game shows. I'm thinking of you and sending well wishes your way. God Bless You REAL GOOD!!!!!!!!!!!!!!!!!! Dawn

I had mono when I was 14. I remember being out of school for a month. My spleen was very enlarged I looked like I was 7 months pregnant. I really feel my POTS is genetic though. I try to pin it on the mono or the lymes, but in all reality I think I had it since birth. As a small child I always told my mother that my heart was beating so fast and I had terrible tummyaches. Dawn

Bamagirl, I can totally sympathize with you. I take beta blockers, Xanax and Klonopin. I still get several surges daily. I really hate it when I'm alone. I try to walk it off but then I get tachy and syncope. I have a hard time concentrating. I have tried everything, I'm working now on just "riding the wave" as my psychologist puts it. Usually I lay down and elevate my feet, I try to find a game show on TV. I know how hard it is. Try not to get in the habit of thinking negative thoughts(I'm trying to break that habit myself). "Awfulizing." I can convince myself that I'm having a heart attack or a stroke or that I'm dying. The fear of the fear just makes it worse. Claire Weeks or Weekes has a CD on passing through panic. I find that helps sometimes. I put on the headphones and her voice is very reassuring. I ordered it on Amazon. com. Wish I had a magic wand I could wave your way. God Bless, Dawn We all need to ride this wave together, don't give up!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Morgan, I didn't know you where having an MRI. What was it for? I haven't been reading posts or writing lately. I'm fortunate to not have claustrophobia, in fact I find the MRI scanner quite cozy. I feel like I'm in a a safe secure little part of the world. It relaxes me. Maybe I should ask Santa to bring me one for Christmas. I sure don't sleep well in bed. Dawn

I have this too. My doctor says it is because my autonomic system is so unstable ( Mayo said the same thing). Anyway he said when most people stand their vessels in their legs constrict, because we are always vasodilated our vessels just start to spasm causing the blood pressure readings to be all over the place. Our brains and nerves are just out of synch with each other. All part of POTS. Dawn

I am thankful for each day that God gives me. The many blessings given to me: My 3 boys. A husband who has stuck with me through all the up's and down's. The many caring friends that I have. A warm house. 2 brothers and 1 sister who would do anything for me and love me with all their hearts. My 2 dogs, Mia and Sammi, forever faithful. The knowledge I am learning through reading scripture. This website and all the understanding and compassion that is here. A knowledgable physician who I can call at anytime, day or night. A normal MRI. All the angels (earthly & heavenly) who help me through the day. The authority God has given me to take authority over this illness in his name and rebuke it. I speak to my illness and command it's depature in the Name of Jesus Christ.

I had a flu shot the past 2 years with no problems. (I was working with alot of sick kids in the school district.) This year my internist recommend I not get one, but that my family all gets one. He said 1 in 1000 people still get guillian barre from the shot, and with my nervous system being so overactive it's probably not a good idea. I recently had an EEG with overactivity on the left side of my brain. The flu shot is a dead virus so it is relatively safe. Dawn

I have the same thing. Usually if I lay on the floor and elevate my legs up on the couch for 1/2 hour it gets better. I also have problems with low BP but can tolerate Inderal 10mg which I take 4 times a day. Sometimes it really doesn't help the tachycardia but it does help with anxiety because it is a beta blocker that crosses the blood/brain barrier. Lots of fluids can't hurt and sometimes help. I feel like alot of it is hormonal. The tachycardia doesn't bother me as much as when it gets out of rhythm. Hang in there. It seems like all these symptoms flare up for awhile then get better. It's kind of a cycle. Dawn

It's so nice to have a doctor who cares. My neurologist is always in and out, just asks questions while looking at the computer screen. Then I am blessed with an internist who spends an hour with me everytime I go in. He is a very busy doctor doesn't take new patients, but when I'm there it's like I'm the only patient he has. He reassures me, last week I said just tell me I'm not dying. He said look into my eyes, if I thought you were dying I would tell you. I believe your heart is fine (I think every arm and shoulder pain is angina). I come out of his office feeling 10 pounds lighter whenever I go. I'm glad you found someone who is compassionate, it really helps. Dawn

No lesions or "white spots." The MRI and CT scan were negative. It was the EEG which showed an intermittent disturbance of cerebral activity. Slow and sharp wave activity was seen in the theta frequency band over the left hemishere, with phase reversal at T3 and occasional equal potentiality at F7-T3. Impression: This EEG showed an intermittent disturbance over the left temporal region,which at times appeared epileptic and was suggestive of focal seizures over this area. He explained his concern as the left temporal lobe controls language, memory and emotion. I have an appointment on the 7th to wear the EEG for 24 hrs (he will extend it to 7 days if any abnormality). Thanks for your responses. Just curious how many people have had an EEG, I've had POTS for over 15 years and never had one before. My internist said alot of the symptoms could be explained by post seizure activity EX: nausea, fatigue, headache, facial flushing, depression, feeling of fear, loss of appetite, sweating. He said "does any of that sound familiar?" Dawn

Mornings are always difficult. One neurologist told me at night is when we produce adrenaline. A normal person gets up and moving and they get rid of the adrenaline while ours just keeps circulating in our systems. I usually am still awake at 3:00 AM and sleep til about 10:00. I try to shower before bed. I also take Klonopin at bedtime, my doctor said even if it doesn't help me sleep it gives my nervous system a rest. Hang in there, I know how hard it is. Dawn

Hi, I recently had a couple episodes of slow speech. I saw the neurologist, had an EEG, carotid ultrasound, CT scan followed by an MRI. He thought I had a small stroke. The MRI was fine but the EEG showed probable focal seizures. I have to wear an EEG for 3 days to get a better test. Just curious if anyone has been diagnosed with a seizure disorder and if so what medication they take. The doctor mentioned neurontin, depakote or dilantin. Dawn

Yup, Sitting, lying, standing, shopping it really gets bad. Sometimes I'm lying or sitting and it's 110, I'll get up and it drops for a few seconds and then it really takes off. My beta blocker doesn't seem to work as well as it used to. I've noticed more skipping lately too, especially in the morning when I first wake up. Sick of it!!!!!!!!!!! Dawn

I'm exactly where Poohbear is. If there is any way you can continue to work do so. Being home has not improved my symptoms at all. The isolation makes us focus even more on our symptoms. I too worked umtil it was just impossible. I would try to find a doctor who is receptive to the treatment recommended. Some doctors don't have such big ego's and are willing to do what another physician recommends. I am lucky to have the internist I have because he will let me try anything I think will help. Good luck to you. Dawn

Vanessa, Just curious why you had to go off the florinef. When I had surgery twice while on florinef they had me stay on it, even increase it the morning of surgery to keep my BP up during surgery. Both surgeries went really well and I wasn't so hypotensive after. Dawn

HI Julie, I tried Lipitor (stomach pain), tried Zocor (constipation and bloating). I have been on Lovastatin for 7 weeks now without a problem. My cholesterol was over 300 and is now 198. My brother said it works the best for him. My nephew has switched to it too and is not having problems. If someone in your family is on a statin ask them. I think our genes play a role in medication tolerance. Our entire family cannot tolerate Morphine. I have never heard of Zetia so can't make a comment on that. I was able to lower mine when I was younger with diet and supplements, took B complex, garlic, lecithin, fish oil, and calcium and magnesium. Wish you luck. Dawn

My LTD through my employer will last for 2 years. I need to see my internist every 3 months. They require me to fill out a form every month listing my daily activities, any appointments or hospitalizations, medications etc. Dawn

If you are close to a University Hospital, I would try there. Call their neurology department and ask if they have a physician who is educated about POTS. I have had the best luck with neurologists and my internist. You could also try contacting the neurology department at Mayo and ask who they would recommend in your area. Good Luck Dawn

Lauren, You seem to have struck upon a topic that alot of us struggle with. I have lost my sexual desire completely. I know beta blockers have an effect, but it is much more. Sex takes energy, something I use up just living. It's hard to accept because it's another part of our life that we have to give up. I feel like this illness has robbed me of almost everything that brought me pleasure before I was ill. My husband understands but is frustrated. I know he wants to be intimate and I feel very guilty. Of course I could make a list of things I feel guilty about not doing. Wish I was feeling witty and could offer some humor on this subject but I'm not. Dawn

My BP used to always be low, now the diastolic is usually high. My regular physician and the physician at Mayo Clinic were not concerned. Chalked it up to a labile autonomic system. I've decided to just not check it anymore. Dawn

Dave, Tell Morgan Hi from Dawn, tell her to email me if she feels like it. I totally understand if she needs alone time to process this. Tell her I understand, I myself have had 2 episodes this past month where my speech is impaired. I see a neurologist again next week but the neuropsychologist thinks it is somatization disorder. I scored in the 99% on that psychologist test. Tell her to remember the mind and body are connected, we cannot separate one from the other. Whatever is the cause of our symptoms, it makes no difference. We just all want to be well. Hugs, Dawn