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SarahA33

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  2. Forum & Website Experiencing IT Issues

    in Dysautonomia Discussion

    Posted

    Dear DINET Members:

    We are currently experiencing temporary technical issues within our forum & website, www.dinet.org 

    We appreciate your patience as we work to resolve this as quickly as possible and are sorry for the inconvenience.  We will update you accordingly here on the forum, however should you be unable to access the forum, please visit the Dysautonomia Information Network Facebook Page for more information. Thank you!

  3. Hyper POTS, AI and exercise

    in Dysautonomia Discussion

    Posted

    Hi, p8d,

    Balancing an exercise regimen is hard for me also. I used to have a schedule that I tried to follow, and I ditched that because I couldn't keep up with it on my very bad days. My doctor said to exercise 3-4 days a week, so I just do as much as I can on the days I feel my best. Some weeks I only get 2 days in but it's better than nothing.  There is a definition for this that's used in the CFS community, post exceptional malaise which is the inability to repeat previous exertion due to worsening of symptoms both physical and cognitive.  Some of My POTS symptoms have most definitely improved with exercise except for fatigue, which I suppose could be more related to my autoimmune issues, too. 

    Hi, recumbent biker, 

    Welcome to the forum! So sorry to hear about the obstacles and challenges your facing. I understand the ER merry go round also, many of us here do. Have you seen a Dysautonomia specialist? Maybe you'd benefit from a center like those at Cleveland clinic, mayo or Vanderbilt. They have all types of specialists under one roof and offer in depth full autonomic testing. Hope things improve for you. Sarah 

  10. Hyperpots?

    in Dysautonomia Discussion

    Posted

    Hi Kelly - Welcome to the forum! Maybe a second opinion is needed? Here is the diagnostic criteria from a recent paper by Dr. Raj, a POTS specialist -

     

    Table 1

    Diagnostic criteria for postural tachycardia syndrome

    • Increase in heart rate ≥30 bpm within 10 min of upright posture (tilt test or stand) from a supine position

     ◦ Heart rate increase must be >40 bpm in patients <20 years

    • Associated with a constellation of symptoms that are worse with upright posture and that improve with recumbence

    • Chronic symptoms that have lasted for >6 months

    • In the absence of other disorders or medications that are known to predispose to orthostatic tachycardia

    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

  11. Uncommon(?) POTS symptoms

    in Dysautonomia Discussion

    Posted

    Hey Plaster -- nice to hear from you -- though sorry it's under these circumstances! I thought Sjögren's syndrome also.. dry eyes, low grade fevers. There is a study we recently posted on our facebook page just completed by Dr. Brent Goodman from Mayo Clinic  -- Spectrum of Autonomic Nervous System Impairment in Sjögren Syndrome" and we include a list of Sjögren symptoms. You might want to take a look there. Have you had a lip biopsy? 

  12. High and low blood pressure

    in Dysautonomia Discussion

    Posted

    Hi, Ancy! I was just thinking -- northera is much longer acting than midodrine, so you'd have "less control" over your hypertensive episodes, as midodrine is shorter acting. Mine wears off in about 4 hours. I'm also a rapid metabolizer so it could linger longer for you and others. Something to definitely talk to your dr about though!  I have to listen to my body when taking meds for the day, and like the midodrine, the clonidine wears off quickly as well. I'm still on as directed doses of Ivabradine & Florinef, but I have two doses of 3 meds, Midodrine in 2.5 and 5mg, Clonidine in 0.1 and 0.3. , Propranolol 120mg LA and 40mg tabs. So, depending on my symptoms I take the most appropriate dose.  Even when I'm hypotensive I still take the 0.1 of Clonidine because it manages my POTS symptoms so well. It helps with night sweats, insomnia, tremor and flushing -- those were some of my worst symptoms before starting this med, if I don't have it my adrenaline just starts pumping away again. My doctors have given me permission to do this with my medications, if not I'd be calling them on a daily basis asking if I could take a different dose lol.  I wear both my abdominal binder and compression socks, take in increased fluids and sodium on the hypotensive days.   I can see how your cardiologist was apprehensive about rx'ing the clonidine -- my local POTS specialist is a hypertension specialist and brought a resident with him one day -- he said," In 39 years of practicing I've never prescribed clonidine for this purpose but it's her game changer" 

    I'm glad you've had some nice moments this summer thus far. It sounds so peaceful and serene where you are!  I have been doing rather well until recently. I went to a few concerts, been playing softball, and spending time with my family and friends. I've recently had a setback but I'm optimistic it will pass with rest and time :) 

  14. Autonomic Test Results... Wondering if I have dysautonomia..

    in Dysautonomia Discussion

    Posted

    Hi, Welcome to DINET!

    I'm not able to open your document, I'd suggest copying and pasting the results if possible.  If you feel you need a second opinion, I wouldn't hesitate to get one. Here is our physician's list which offers a search option to find doctors by location who are familiar with dysautonomia's. Also, if it's been a few years since you've had autonomic testing and you are still symptomatic perhaps you can be re-tested by a doctor specializing in autonomic disorders. Take Care! Sarah

  16. High and low blood pressure

    in Dysautonomia Discussion

    Posted

    Hi, Ancy! Nice to hear from you, friend! FYI -- we have recent Northera studies published by Vanderbilt and Dr. Grubb on our DINET Facebook page.  Just realized I'm not the only one juggling midodrine and clonidine in a medication routine.. it's exhausting. I have orthostatic hypertension & hypotension, plus been dealing with Low low's in the morning so I have to skip the BP lowering meds which cause a high HR and then hypertension later in the day. Its very hard to medicate accordingly. I know midodrine can cause vasoconstriction but I've been getting chest pain when I take a 5mg dose.  I think its related to the vasodilation and vasoconstriction.  How is your hr doing now with the pm? Hopefully it's one less thing for you to worry about.  Sorry to hear there is so much going on right now -- I hope it settles down so you can enjoy your summer. Always Wishing you the best!

  18. Dysautonomia and Alcohol?

    in Dysautonomia Discussion

    Posted

    Hi Meghan, Welcome to the forum! 

    I'd choose a drink that re-hydrates you and drink a bottle of water in between. Regarding your question about avoiding alcohol -- that depends on how well you tolerate it, it looks like you have mixed reactions. I'd suggest steering clear from it if you have an event or commitment the following day, or if you aren't feeling well. Do you have problems with your blood pressure? Alcohol dilates (opens up) blood vessels which can lower your pressure. Are you taking any medications that can interact? I have a friend with POTS and she drinks a beer because that helps her POTS symptoms,  presumably due to alcohol being a depressant and calming down cns activity, until dehydration kicks in.  Here is the pots - what to avoid list,  alcohol is listed here.  There are some great past threads on this -- if you use the search feature in the above corner you can find many topics on this subject and read other member's experiences. All the best to you! Sarah

     

  19. When I drink water...???

    in Dysautonomia Discussion

    Posted

    Hi there. Brc-- man, I'm really sorry you experienced those events. I hope you didn't injure yourself :( Do you pass out every day?

     I wonder if your sensitive to the bp changes like the sudden onset of an increase (see below) or if it's due to a temporary shortage of oxygen or.blood to your brain. My doctor told me that when I feel pre syncopal to drink two bottles of water within 2 to 3 minutes. Drinking pure water at that rate increases sympathetic nervous system activity, constricts blood vessels, and energy expenditure. The red cross did a large study on syncope and blood donors tosome years back, they found drinking 16 ounces of water before giving blood reduces fai6nting episodes by 20%

    Some other thoughts...had you just exercised? Maybe your electrolytes could be slightly off.  Do you have your period?   I'd like to know the answer to this also, do you mind if we include this in our upcoming Medical Q&A Column in the DINET Newspaper? Our Dysautonomia/POTS Medial Experts answer member questions.

  20. Update on my journey

    in Dysautonomia Discussion

    Posted

    So happy for you that you'll get to see a POTS specialist. My POTS specialist is also further away, about three hours with no traffic-- he's totally worth the distance though! He sends office notes to my local doctors including medication suggestions and I follow up with him about every six months. Good luck at your appointment!

  21. POTS physician Quebec, Canada

    in Dysautonomia Discussion

  23. Horrible Night Sweats?

    in Dysautonomia Discussion

    Posted

    We've discussed this topic in past threads, there is a search option above to type in this subject. This used to happen to me all the time. During this time I also had horrible insomnia and was miserable. I started Clonidine, which is a BP med that blocks norepinephrine (adrenaline) and the surges completely stopped. Ativan was helpful for a time to calm the central nervous system down, but I've been able to go off that. Hope you get some relief soon!

  25. Compression Clothing

    in Dysautonomia Discussion

    Posted

    Great news, Debbie! I'm glad you've found a combo that works so well for you.  Have you thought of trying out an abdominal binder also? I have a friend with POTS who uses her binder in the morning when her symptoms are at her worst and switches to compression stockings by early afternoon.

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