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SarahA33

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  1. Doctors in NYC for POTS diagnostic / Tilt Test

    in Dysautonomia Discussion

    Posted

    Welcome to the forum! In addition to the list above here are some other docs in your area.. Just an fyi,  DINET doesn't endorse any physician

    http://nynapc.com/doctors/detail.php?ID=14

     

    I think Dr. Weimer is on the but just in case: http://columbiaemg.org/autonomiclab.html

     

    Mount Sinai School of Medicine, Autonomic Disorders Research and Treatment Program, Dept of Neurology  212-241-7315


    Dr. Kiril Kiprovski, Department of Neurosciences  Hospital for Joint Diseases 212-598-2375
     
    Dr. Ludmilla Bronfin 212-532-6298
     
    Dr. Max Hilz, New York University 212-686-7500 ext. 7755
     
    The Syncope Center at Columbia Presbyterian Medical Center 212-305-9940
     

     

  3. Doing worse. Ideas?

    in Dysautonomia Discussion

    Posted

    A lot of doctors are hesitant to use ivabradine because it's so new and don't have experience with it. It was approved by the fda in May 2015. It took about six months of talking back and forth with my pots dr before he agreed to start me on it. I don't have any side effects from it which is awesome, but it does interact with a ton of meds. Since its just been approved here in the US there is very little research on it,and most is on heart failure bc the pots is off label. It's been a game changing med for me, I did find some research on pots and ivabradine, hopefully they'll put out more.

  5. Bad Day. HyperPOTS..... or something else????

    in Dysautonomia Discussion

    Posted

    I'm sorry BuffRockchick that you experienced this.  As much as my POTS symptoms have improved over the last few years I still cannot stand. It triggers an adrenaline rush for me, probably due to the blood pooling. I wear compression socks 30-40 rather than 20-30. I also started using an abdominal binder which helps. Like Haugr mentioned I also have episodes triggered by anxiety. My doctor is pretty sure that I have generalized anxiety, but it's not for sure since my adrenaline (norepinephrine) levels come back so high. He did say it could be a secondary anxiety caused by primary symptoms also. I didn't have anxiety before I got sick, but I was always rather "jumpy" or easily startled.

    This is a perplexing and difficult condition, especially because symptoms change frequently with no rhyme or reason. I hope you get some answers with a diagnosis. Most of us begin to improve then. I was re-diagnosed with POTS (hyper) at Cleveland Clinic and also Inappropriate Sinus Tachycardia. The symptoms can overlap so it made obtaining a diagnosis challenging. The good news is that after I was diagnosed with IST, I was started on Ivabradine and it regulated my heart rate. Take care, Sarah

  9. Month off of proranolol and my BP is normal

    in Dysautonomia Discussion

    Posted

    Kala - Happy to hear your having improvements off of propranolol!

    Stayathomemom - here is the info on hyper pots taken from Dr. Raj's recent paper on POTS. http://link.springer.com/article/10.1007/s11910-015-0583-8#Sec3

    Central Hyperadrenergic POTS

    Although the elevated sympathetic tone in POTS is often secondary to another pathophysiological mechanism, such as neuropathy or hypovolemia, it can also be the primary underlying problem [19]. Furlan et al. reported increased sympathetic tone in patients with POTS [52]. Resting sympathetic nerve activity, measured by microneurography, is elevated. A spectral analysis index of sympathetic function and plasma norepinephrine are sometimes higher at supine rest and increase more with HUT in POTS [52, 53]. Plasma norepinephrine levels should be determined in patients with POTS while in steady state in the supine and upright positions (at least 10 min in each position). When measured during upright posture, norepinephrine is elevated in many patients with POTS (>3.55 nmol/L (600 pg/mL) and sometimes >5.91 nmol/L (1000 pg/mL)), consistent with the sympathetic neuronal activation elicited by standing in these patients [19]. This is sometimes used as a criterion for the “hyperadrenergic subtype” of POTS.

    An exaggerated sympathetic vasoconstrictor response during the recovery and overshoot phases of the Valsalva maneuver may also reflect a hyperadrenergic state in patients with POTS [2, 19]. These patients may have orthostatic hypertension (increase in systolic blood pressure >10 mmHg on standing) and complain of tremor, anxiety, and cold, sweaty extremities

  10. 4 years later - back to square one

    in Dysautonomia Discussion

    Posted

    Hi, Altruism! Welcome back to the place where others understand what your going through, (though sorry you have the need to be here). Can you think of anything that might have changed? Medications? Alergies that were introduced that weren't in your life before -- soaps, detergent,  animals , food, etc)

    I'm so sorry you are going through such a challenging time. Your right, for many of us it doesn't go completely away - but we do go through periods of long remissions (as you experienced first hand) and can live our lives. Did you try calling your pcp -- maybe your electrolytes or hormones could be off?  Hang in there - Sarah

  12. I'm not sure i actually have POTS

    in Dysautonomia Discussion

    Posted

    I'll join the club -- Buffalo is no fun, either!  I have Raynaud's and my extremities feel numb and tingly most of the time. Kind of like when your foot falls asleep and you have to shake them to wake up? Here is a pic of how red my feet can get, my ears burn also. This has been discussed in past threads also.  There is a medication rxed for pots that can help with temperature regulation, mestinon. This is a comment symptom in our community unfortunately :(

    IMG_20170301_141739.jpg

  13. Feeling very frustrated and scared

    in Dysautonomia Discussion

    Posted

    There is an anxiety medicine, buspar, which was recommended by POTS Dr at Cleveland clinic. He said it doesn't cause worsening of Autonomic symptoms.  I haven't utilized it yet.

    Often with pots and general Dysautonomia, it's a trial and error of meds and treatments that provide relief.  If you don't want to use medications to control symptoms then there are non pharmacological treatments to ask your doctor about. 

    • Increase fluid intake (2-2.5 litres per day).
    • Increase salt intake (3-5 g per day).
    • Raise the head of bed.
    • Exercises for the lower legs to improve muscle strength and pump action. Exercise programmes must be graduated.
    • Compression stockings.
    • Changing eating patterns - for example, eating smaller meals more frequently.
    • Avoidance of alcohol and other trigger factors (such as heat or sitting still for long periods of time).
    • Counter meanuevers to prevent syncope 

     

    Article written by one of our medical advisor's dr Julian Stewart  http://emedicine.medscape.com/article/902155-treatment#d7

  14. Clonidine

    in Dysautonomia Discussion

    Posted

    This past thread might be of interest to you: http://www.dinet.org/forums/topic/26754-benzos-and-ssris-and-dysautonomia-better-or-worse/#comment-249137

    This is the opinion on meds from dr. Grubb on hyper cases: 

     
    "In the hyperadrenergic form of POTS, patients often respond best to agents that block norepinephrine or its effects. One agent that is particularly helpful is clonidine HCI in either pill or patch form. We start the oral form at 0.1 mg PO 1 to 2 times a day and filtrate upward. The patch form of clonidine is quite useful because it provides a constant and continuous amount of the drug for up to 1 week at a time. The combined and β blocking drugs labetalol and carvedilol are quite useful in some patients as pure β-blockers may exacerbate symptoms (because of unopposed receptor stimulation). Methyldopa has been reported to be useful in some patients, as has phenobarbital. In addition, both the SSRIs and norepinephrine reuptake inhibitors are useful in select patients."

    Article written by Dr. Satish Raj, view the central hyeradrenergic section: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3756553/

     

     

  15. Clonidine

    in Dysautonomia Discussion

    Posted

    I have horrible heat intolerance that impacts my heart rate and BP.  Kalamazoo, Dr. Grubb mentions clonidine in his research for treatments for hyper patients as it works to control varients of the sympathetic nervous system by decreasing adrenaline (ne levels) sweating/flushing, tremor, BP surges which are all common symptoms in hyper form. 

  16. Feeling very frustrated and scared

    in Dysautonomia Discussion

    Posted

    Since we cannot give medical advice here at DINET, we don't know and can't answer if you require an extended stay in the hospital.  I remember in your other topic that you were going to look into getting health insurance, have you had any luck with that?  I think you also mentioned having an appt at a clinic,  I'd think if you feel you should be checked into the hospital, you call the doctor you saw there. Most physicians have priveledges through certain hospitals, this way the Dr. Could  possibly have you admitted. If you don't have insurance, there are social workers and financial staff that will most likely arrange for you to receive assistance in paying your bill and help you obtain coverage.  Did your doctor suggest that you check your vitals so frequently throughout the day? I mention this because when I first got sick with POTS symptoms, I was checking my vitals all the time and I completely stressed myself out. My doctor told me I'd be better off checking them when I first wake up in the am, then once before bed - every other day - so that I didn't add to my anxiety. For me, it was a great suggestion as it helped me feel less overwhelmed and hopeless. Just a thought. 

    Haugr  -- I really like your cousins explanation of horses vs unicorns! Thanks for sharing :)

  17. Clonidine

    in Dysautonomia Discussion

    Posted

    Hi, Di. I have been on clonidine for years for my hyper POTS. I get a trifecta of relief from it - helps my anxiety, lowers BP along with HR (slightly), and works for sweating & flushing, and tremor. I had horrible insomnia before starting it, but I also wake up about every 3 hours. My dr. said it's a short acting medication so it needs to be taken around every 6-8 hours, but I'm a rapid metabolizer w/ meds so I take it every 4 hours. Clonidine also comes in a patch form that you change weekly, this offers a constant dose.  When i first began taking it I had a lot of dizziness and was drowsy, so I napped a lot during the day which threw off being able to sleep at night. I learned that I needed to get up very slowly when changing positions for the dizziness, and after about 1 months the drowsiness went away. I'm not aware of clonidine causing tachycardia but maybe you had a paradoxical affect somehow? I would suggest talking to your doctor or even calling your pharmacist for some thoughts? Sorry I couldn't be of more help. Did your dr. Rx it for a sleeping aid or pots? It's given off label for insomnia. Take care! Sarah

  18. Relapse

    in Dysautonomia Discussion

    Posted

    I also have hyper pots, and was advised by my pots specialists to take in a certain amount of sodium and fluids every day. I had high BP before this and it's not any higher because of the sodium intake. It has something to do with expansion of blood volume and kidneys.  There are past threads on this. 

  20. Relapse

    in Dysautonomia Discussion

    Posted

    Hi Marsha, 

    I'm also so sorry for your loss. 

    I've also relapsed after about a year of feeling very well.  It turns out my electrolytes have a hard time stabilizing now for some reason.. have you had labs checked? Also had some other issues but those were rare. Maybe they could run some thyroid labs. Are you wearing compression socks? Those help me tremendously.  Hope things get better for you soon. Sarah

  24. Modafinil losing effectiveness

    in Dysautonomia Discussion

    Posted

    Kathy, sorry to hear provigil has lost its effectiveness. How long were you taking it?  There's another stimulant I've heard rxed called nuvigil.  I'm not sure if you had trouble getting the provigil covered with your insurance co. But nuvigil has been difficult to get approved also. Some members have also had success with ritilin, but I don't think it's as mild as provigil, so tachycardia could be a problem

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