Sonya

Has anyone had any issues after a Reclast infusion? Does anyone else have osteoporosis that the cause is unknown?

I have hyperadrenergic Postural Orthostatic Tachycardia Syndrome and just was given Lidocaine mixed with Afrin for a sinus visualization procedure and within 1 min experienced severe anxiety, HR elevation and mild shortness of breath. I have the same effects with coffee as well so must be careful to only half one half cafe if that. I have use Flonase Sensimist (fragrance free one) with no issues, it was very effective after 3days use.

I was advised by the POTS Autonomic specialists to avoid anesthesia if possible since we have many different reactions to meds and treatments. I was diagnosed with POTS at Cleveland Clinic originally with a TILT table test. Then at Vanderbilt University, they repeated the TILT table test and they drew your blood for Norepinephrine and Epinephrine levels as you were laying and then again while you where in the upright position. My Norepinephrine levels went from 250 laying to 1260 standing. You have to be off a lot of medication for 72 hours prior, which was very difficult but required in order to get accurate results. I'm so sorry bluebonett that you are suffering so. I hope once you are done with your pregnancy that your symptoms will lessen. Im now through menopause and find flares not as bad as they were just prior to every period. Everyone is so different.

I have Idiopathic Hyperadrenergic POTS. I went to Vanderbilt (Best place to go for dysautonomia assessment and diagnosis)- I saw Dr. Biaggioni in 2012. They also have a Research program that you can participate in that is free if you are accepted and provides a lot of info into your disorder and education. I learned alot during my treatment that I'm still using today and wanted to share so that hopefully my difficult journey can improve others. May God bless you all during this difficult time. What helped me improve/decrease symptoms: Avoid standing in one place- if so squeeze/pump quads. Keep hydrated-extra fluid intake (V8 helps since a lot of sodium), If you drink a lot of water make sure you are getting extra salt and electrolytes otherwise you will end up feeling unwell from hyponatremia. Higher salt diet, I supplemented w salt tablets. Avoid dehydration. avoid getting overheated, not bending over- squat instead, sit when possible- elevating legs, no climbing stairs if possible, no reaching above head, no blowing up balloons. Do not miss a meal, eat smaller meals, avoiding/limiting caffeine, alcohol, lactose, white sugar, other refined carbs & gluten since they can all increase symptoms. Avoid fatigue, get plenty of sleep. No strenuous exercise- I bought a used recumbent bike and no matter how bad I felt I exercised 20mins daily and performed lower extremity weights/squats 3x/week no matter what. Decrease stress (easier said than done)-Cognitive behavioral therapy- since having illness is very stressful/and depressing at times. Abdominal binder, Compression stockings-especially if flighing. If you have to fligh, be very careful-ask for a bulkhead seat and pump legs/elevate if possible, request a wheelchair to assist if necessary. Do not give blood. Avoid anesthesia unless absolutely necessary-and if required request an Arterial line and extra IV fluids. Avoid epinephrine. (Remember everyone is different, this is my individual experience, please consult your Doctor since every situation can be quite unique.

Vanderbilt is the best place to go for dyautonomia assessment and diagnosis- I saw Dr. Biaggioni in 2012. They also have a Research program that you can participate in that is free if you are accepted and provides a lot of info into your disorder and education. What helped me was to keep hydrated, Salt tablets, eating smaller meals, avoid getting overheated, I bought a used recumbent bike and no matter how bad I felt I exercised 20mins daily and lower extremity weights/squats 3x/week no matter what, Increased sleep, decrease stress(easier said than done). Cognitive behavioral therapy- since having illness is very stressful, do not bend over,-squat instead, no climbing stairs if possible, avoid eating large meals, avoiding lactose, white sugar and other refined carbs & gluten since they can increase symptoms, do not give blood, no strenuous exercise, avoid fatigue, get plenty of sleep, do not give blood, no energy drinks, no blowing up balloons, no reaching above head. I hope this helps you too.

Thank you for your replies. I am at a loss. I developed bilateral wrist pain over a year ago and very tight forearms I thought it was from my computer use at work. I didn’t have joint pain when my POTS began back in 2011 only headaches. My joint pain from my wrist then went to my elbows. I have burning from my elbows into my forearms if I bend my elbow‘s and my hands get very cold and stiff with use. They do not turn blue or red though so the doctor say I don’t have Reynards. I am now diagnosed with bilateral carpal tunnel, bilateral cubital tunnel, owner neuropathy. Every doctor I see states I need to go to Mayo I’m too complicated. They state that my complaints don’t match up to my MRI reports. I’ve been tested for every other immune disease in the planet at Mayo clinic now and everything comes back negative. Except for my ANA is positive. They are telling me it’s muscular skeletal and neuropathic. Possibly even fibromyalgia. Ive been trying to do physical therapy and occupational therapy and during therapy I ended up herniating my neck. And now I have bursitis in both my hips from trying to do lower body exercises so my pots doesn’t get worse. When I go to see the doctors they dismiss me as if it’s not significant. Even though I cannot use my hands To do anything heavy now for 15 months. I have now had to go off work again. I was working for three years. I am very disheartened I’m not sure where to go.

Have you gone to Mayo Clinic or Vanderbilt? I would if I were you. Before my diagnosis I was diagnosed two different diagnosis’s, even conversion disorder which is our stating that it’s psychological. They were wrong.

I just had a flare after developing Shingles in Dec 2017. My POTS had resolved in Jan 2014, So I too am quite worried. I am 47yrs old now and am now post menopausal, which I think helps, since I used to have to worse POTS symptoms prior to my periods. I pray your flare up passes. I pray I never end up where I was back in 2011-2013.

Anyone else suffering with pain? I am cannot tolerate many medications, since small doses cause significant side effects usually /hypotension/confusion etc. I was first diagnosed with Idiopathic Adrenergic POTS in 2011 at Cleveland Clinic, in 2013- I had a AVNRT Ablation and my POTS symptoms resolved soon after thank the Lord once I was taken of Beta Blockers and SSI. I recently had POTS reagravation in 2017. I first developed bilateral wrist pain, elbow pain and burning pain into forearms, frequent headaches, frequent infections x 1 year, and now POTS again. Anyone else suffering with pain? The last time I had POTS I had the migraines/headaches, but never joint and burning pain.