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pots? Need Help!
I am a 49 year old women and I can only stand up[ for 10 minutes max and that is a struggle. I feel my heaart pounding and I feel weak and out of breath;. I was hospitalized 3 days for the tachycardia but they say my heaart is fine. The electrophysiologist said maybe POTS. Of course when I call to schedule with him he has gone on vacation. I dont want to wait a few weeks to find out and I see no specialists forthis in Miami. All the posts seem to be from 2010 on doctors so Im wondering if anyone knows of someone here as I dont even think I could travel. Sitting is very difficult, I have to recline. Any advice or experiences would be appreciated!!!
I feel your pain, trust me. There are 2 Drs I found that you may be interested in. The first is Dr. Sinana Gursoy located at Naples Interventional Electrophysiologist 311 Tamiami Trail Suite 201 Naples, FL 34102 phone # 239-643-9977. I found her under Dysautonomia International. And their is Dr. David Robertson at Vanderbilt Univ Medical Center
1161 21st Ave. Nashville, TN He comes HIGHLY RECOMMENDED!! His phone # is 615-343-6499. I do hope this helps. wschramm in Largo, Fl
1161 21st Ave. Nashville, TN He comes HIGHLY RECOMMENDED!! His phone # is 615-343-6499. I do hope this helps. wschramm in Largo, Fl
I'm sorry you are suffering so! Have you seen an ENT about the off-balance and dizziness to check for vestibular system causes?
Going through a bad trial right now and can barely do much it seems with pots ,ans dysfunction,weakness,its and more...also in south Florida..still trying to figure out what to do next..also have lupus,and sjogrens and wonder if that is what is contributing to this all. I have been so off balance as well and dizzy from the slightest things , even eating or laughing , temperature, or standing effect me. Recently I started having my teeth break from the sjogrens and now after many being pulled the oral surgeon wants to take them all out!But some docs say aim not stable enough....praying for answers!
My favorite ones are Jobst brand from my local medical supply store. I bought footless ones so that I could wear sandals this summer and not feel totally "orthopedic." :)) For your first pair you need someone to measure you so that you get the right fit. Then, if you want to order online you will have better luck with sizes.
I found leggings on-line at a site called Wayfair. They aren't as firm as the Jobst, but in the summer, they are working ok. Did the doctor tell you what strength you should get? Most people I hear from on other boards wear medium or firm compression. I wear medium, and I have to wear the waist high variety. There are knee-highs, thigh-highs too, if that's what you need.
Another good site with some "pretty" ones is legluxe. I know a Potsy who wears a lot of their tights.
Do NOT buy tights from compressionstockings.com. I bought a pair from them that didn't fit right and they do not back-up thier return policy.
And lastly, you might want to check at some of your local hospitals. Two where I live sell them. And sometimes it's nice because you can feel them and look at them up close.
I found leggings on-line at a site called Wayfair. They aren't as firm as the Jobst, but in the summer, they are working ok. Did the doctor tell you what strength you should get? Most people I hear from on other boards wear medium or firm compression. I wear medium, and I have to wear the waist high variety. There are knee-highs, thigh-highs too, if that's what you need.
Another good site with some "pretty" ones is legluxe. I know a Potsy who wears a lot of their tights.
Do NOT buy tights from compressionstockings.com. I bought a pair from them that didn't fit right and they do not back-up thier return policy.
And lastly, you might want to check at some of your local hospitals. Two where I live sell them. And sometimes it's nice because you can feel them and look at them up close.
So glad to hear you are getting some help for your symptoms. I wear compression tights. In this heat, they are a lifesaver! Yes, they can be a pain to put on, but get the gloves and it goes much easier. I have compression leggings in black that I wear with some sundresses and I look ever so slightly stylish sometimes! If you have blood pooling, or are hypovolemic you should really give them a shot. What beta blocker are you on? Are you taking florinef too? Keep pushing the fluids. I drink lots of Smartwater which contains electrolytes. If you can tolerate some exercise, it really helps with your circulation too. I go for short walks a couple times a day and I do strength exercises for my legs. I go to physical therapy too and that is helping my mobility, as this illness really took that out of me.
You're welcome! It is so nice to find someone who believes you! Have you noticed any improvement so far?
I believe compression hosiery is helpful for some people. I bought a pair but had trouble with them and gave up on wearing them. Someone told me there is some kind of device that is helpful for the donning of the stockings, but I didn't get it. I've had a doctor tell me to pump my calf muscles to mimic the heart beating to try to push the blood back upward. I've done that sometimes.
I believe compression hosiery is helpful for some people. I bought a pair but had trouble with them and gave up on wearing them. Someone told me there is some kind of device that is helpful for the donning of the stockings, but I didn't get it. I've had a doctor tell me to pump my calf muscles to mimic the heart beating to try to push the blood back upward. I've done that sometimes.
Thanx for your help! I have had a positive TTT after i ended up in the hospital again. Finally someone who believed me. He is an electrophys at south Miami hospital. So far i am on salt, water and beta blockers. I am trying to exercise as he advised. Do the compression stockings really work...?sorry for the delay in reply..i couldnt log in!
Since there are specialists there in Florida, a reclining front seat (or if you have a Honda CRV front or back seat) as a passenger- do you think that might work for you? They likely tested your potassium and sodium while in the hospital?
You want to be sure and stay well hydrated and get plenty of salt in your diet (if they didn't diagnose you with hypertension) in case you do have orthostatic tachycardia.
Also, did they order a plasma free metanephrines test (fasting blood test) to rule out pheochromocytoma, a rare tumor, usually found on an adrenal gland, which can emit high levels of catecholamines which can make your heart race, make you sweat, give you a headache?
If you don't have some already, since your case is so severe, you might try to get some medical compression hosiery, such as Jobst stockings, to help with blood pooling in the legs that can happen to those with those suffering from orthostatic intolerance.
You want to be sure and stay well hydrated and get plenty of salt in your diet (if they didn't diagnose you with hypertension) in case you do have orthostatic tachycardia.
Also, did they order a plasma free metanephrines test (fasting blood test) to rule out pheochromocytoma, a rare tumor, usually found on an adrenal gland, which can emit high levels of catecholamines which can make your heart race, make you sweat, give you a headache?
If you don't have some already, since your case is so severe, you might try to get some medical compression hosiery, such as Jobst stockings, to help with blood pooling in the legs that can happen to those with those suffering from orthostatic intolerance.
Hi, I also live in South florida, I go to the cleveland clinic in weston , I see dr Jose Baez, you could also try Dr Alberto Interian, electro ib Baptist Hospital, or Dr David Adams at the University of Miami.( neurologist) they don't just specialize in Pots, but have great knowledge about it and are willing to treat
I have two doctors in Florida for you who treat patients with dysaoutonomia, including POTS. Dr. Fred Kusumoto is at Mayo in Jacksonville. Also, Dr. Charles Randy Thompson is located in Pensacola. Dr. Thompson has POTS himself. If you would like more contact information about them, please let me know. The journey to get a diagnosis and treatment can be long and try your patience.Hang in there! I don't know how far these doctors are from Miami. Hopefully, you can get to someone who can help you. Keep us posted!
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