SarahA33

Matt.. our friends in the UK have a POTS organization, POTS UK. They have support groups in many areas.  www.potsuk.org 

Hi, Jean! Welcome to DINET!

Are you still in Texas, or do you travel there? I saw you mentioned you've been riding the doctor merry go round -  One of DINET's Medical Advisors, Dr. Amer Suleman, is a dysautonomia/POTS specialist. He's in Fort Worth & Dallas at his practice, the heartbeat clinic.   He's very thorough, knowledgeable and compassionate. You can find his info through the about us/advisors page. 

Here is a doctor on our physicians list in Portland, OR - http://www.dinet.org/physicians/?advanced_search_submitted=1&csrfKey=c41b401789922a279280f40a9c47fe3f&content_field_7=&content_field_5=&&content_field_17=&content_field_1000=&content_field_1001[1]=Oregon&&sortby=primary_id_field&sortdirection=asc&record_type=all&time_frame=show_all

Take care! Sarah

I'm sorry your experiencing so much pain, it definitely adds another layer to this already complicated puzzle. I always wonder -- is there something additional wrong with me, or do I just attribute the problem to my autonomic nervous system not working properly?

Some members have gone on BC and set up the pills so they'll actually skip their period.  I haven't been able to take BC for years because of my high bp issues. And, unfortunately that's a treatment for endometriosis also. I was supposed to have surgery a few months back, but I've put it off as I've had kidney stone surgeries during this time.  My surgeon told me I had calcium deposits in my pelvic area. Whatever that means. I see my gyn in August so I will have the reports forwarded. 

I think we all need a vacation, lol.

Welcome to the forum, kara.   I don't think there is any length of time that your HR has to stay elevated.  For a POTS diagnosis the only "time criteria" I'm aware of is that some doctors will wait 3-6 months after you've been experiencing symptoms to diagnose.  The diagnostic criteria is a HR over 120 or 30 BPM increase from sitting/supine  to standing, with the absence of orthostatic hypotension.  Sorry to hear about your a-fib, my fiancé has it and he's had two ablations. Knock on wood but the second ablation seemed to do the trick for him - he takes medicine for rhythm control but hasn't had a flair for a few years now. I wish the same for you!   Did the electrophysiologist who did your ablation tell you it could affect your POTS symptoms, or did they start post ablation?  You can do a search in the upper corner for something like ablations and pots, and read past members threads.  Wishing you well - Sarah

Abe or Amy-- Are either of you familiar with CRPS - Chronic Regional Pain Syndrome? A differential diagnosis is Fibromyalgia. CRPS can cause severe musculoskeletal pain, like In your feet, hands, arms,  and can cause changes to the skin in some cases. Some people start experiencing this after a trauma to their body - surgery, accident, health issues like stroke or heart attack. The type of pain can vary but it includes a throbbing, pulsating sensation, swelling, joint pain, temperature changes, skin discoloration including redness and a shiny skin tone, muscle spasms, decreased ability to move the affected area. We just posted an article on our DINET facebook page about a football player who went through all to familiar diagnosis challenges and suffered a terrible amount of pain until he was diagnosed with CRPS. I think he plays for the seahawks now!   Doctors still don't understand the exact cause but they do think the cause may be a dysfunction interaction between your central and peripheral nervous systems and inflammatory responses. 

Abe, it sounds like you have found a good cardiologist who is knowledgeable and willing to work with you. That's so important. I hope your upcoming tests go well. I just wanted to let you know I really related to your story about the progression of your condition. I cannot even begin to tell you how many members I've seen throughout the years here who would also share so many similarities with you. I was in college, working, and a coaching a competitive cheerleading squad when I first got sick.  I was very athletic and never stopped, then I woke up one day and everything was different. In the matter of a month, I wasn't able to get out of bed without help and was passed around to 30 doctors who misdiagnosed and blew me off.   When I was first diagnosed I found DINET and was able to start making sense of things, but all the while wondering how I lived that way for almost 3 years before they figured it out??

This is just a thought -- I wonder if you increased your fluid intake during your cycle if this would make a difference with the calf pain? I wonder if it has something to blood pooling. The toll a menstrual cycle takes on a POTSie has for sure been discussed on the forum before. You could do a search above. Here is a good article written by Dr. Santa Maria, a doctor who specializes in POTS/dysautonomia http://www.santamariamedicine.com/2013/04/10/p-o-t-s-periods-postural-orthostatic-tachycardia-patients-menstrual-cycles/ 

Maybe compression socks would help?  Or, possibly ask your doctor if you could start an OTC magnesium supplement during this time,  maybe the extra boost in magnesium could help the cramping feeling? A few months back I told my pharmacist I was having spasms in my leg,  he told me to buy a bar of plain ivory soap and place it under my feet at night. I'd never heard of that before!   I sure hope you find something that relieves your discomfort. Have you tried a heating pad, or having someone rub the area?

I have endometriosis so during my period I get pain in my back, hips, pelvic area, and I'm not sure if this is related to that, or one of my other conditions, but I experience a lot of bone pain during my cycle.  And if that isn't enough, I also usually get a flair up of my other conditions.  My doctor said there is evidence that Endometriosis shares characteristics of being an autoimmune disease but there is no connection that proves this yet, but it makes sense to me that when the endo flairs it could cause an immune response and aggravate my other autoimmune conditions and cause increased symptoms. 

Congratulations to you! What an amazing accomplishment. Also very nice to hear that you have a support team.. it's always nice to have cheerleaders, isn't it? Thanks so much for sharing your story along with the pic!

Here's a great story that we featured on our Facebook page about a service dog harlow, and Jackie, who suffers from POTS. https://www.theodysseyonline.com/meet-harlow-pots-service-dog

I think low hematacrit can be linked to hypovulemia. I  was severely anemic a few years ago but didn't know until I had the blood volume and hemodynamics test during the autonomic work up at Cleveland clinic

https://my.clevelandclinic.org/health/articles/blood-volume-testing I wonder if you have aaccess to this test where you are? Because I was taking in so much fluid my hemoglobin was showing higher than it actually was, as I was expanding my blood volume. My hemoglobin showed at ten, but when measured during the BV test it was 8, Ferratin was 7, and hematacrit was 29. I ended up with iron infusions

This is an older topic, however, it's very Informative and helpful: 

I'm almost certain hyper pots patients can have hypotension also. I experience both high and low bp, and I've got high adrenaline levels. This may be a good question for our medical advisors... DINET publishes a quarterly newsletter with a medical q&a section, answered by some of the top dysautonomia/pots specialists, you can view the advisors page through the about us tab above.  Our members submit questions, so If anyone would like to submit please send them to DINETandForumInfo@dinet.org 

 Does anyone remember their dopamine levels? I ask because mine have been all over the place.. Not detectable and then slightly higher than the reference range. I saw in one of the papers that dopamine can be high in hyper form.  

Also, welcome to the forum, infoseek!

S@HM & Finnn- do you or your husband get migraines? That is a very common characteristic of hyper pots as well, as is anxiety like Buffrockchick mentioned, more so while upright. and flushing.   Often both supine and standing NE levels are obtained, 15-45 minutes after the patient is left in  quiet room, and then 15-45m minutes after standing upright, depending on the lab.  Some doctors also additionally measure levels during a tilt table.

Here is an older thread:

Here is a recent Paper by Dr. Raj: https://link.springer.com/article/10.1007/s11910-015-0583-8#Sec3

Hi Stay@HM --

I'm looking for the more recent paper that Dr. Grubb has written on this sub-category but I cannot find it atm. I will keep looking. This is taken from a paper he wrote some years back, the info is still relevant. Hope this helps! Sarah

A second (and less frequent) form of POTS is termed the “hyperadrenergic” form.⁹ These patients often describe a more gradual and progressive emergence of symptoms over time rather then an abrupt onset. Patients with hyperadrenergic POTS often complain of significant tremor, anxiety, and cold sweaty extremities while upright. Over half of these patients experience migraine headaches as well as a significant increase in urinary output after being upright for only a short period of time. A characteristic of this form of POTS is that patients will often display orthostatic hypertension in addition to orthostatic tachycardia. Many will also have an exaggerated response to intravenous isoproterenol, as well as significantly elevated serum norepinephrine levels (>600 ng/mL) on standing. http://circ.ahajournals.org/content/117/21/2814

Hi, TheMiss --  Welcome to the forum! 

Tilt table tests are the worst. I passed out during mine also, from what I understand not all people pass out on the tilt but it is common. You  can view the syncope portion of this website for more info: https://my.clevelandclinic.org/health/articles/head-upright-tilt-testThe tilt is designed to allow doctors to evaluate your body's cardiovascular response to the change in position. This usually happens when you have a decrease in blood pressure/hr, I believe this can point to Orthostatic Intolorance, Vasovagal Syncope ( or Neurocardiogenic Syncope) Lower HR's can occur in NCS, when they diagnose POTS on a HUT, patients have a HR  of over 120 BPM+ or a HR increase of 30 BPM+.    Do you normally have low blood pressure? I ask because you mention in your first post neck/back pain can be known as Coat Hanger Pain caused from hypotension. I definitely would try to schedule a consult with a dysautonomia expert to evaluate your results -- you can search through the physician tab at the top of this website for a specialist in your area. All the best! Sarah

Hi, Sean - Many of us here on the forum have had to go through trial and error with medications to control symptoms until finding a combo that helps us become more functional. It's entirely possible that you'd benefit from another type of beta-blocker, there are quite a few out there, or perhaps Lebetalol, which is an alpha-beta. Or, Like Haugr mentioned, hyper POTS is often treated with clonidine (which also comes in a patch form that you may find easier to tolerate as its a continuous, leveled out dose. Another BP medication that is rx'ed for this type is Methyldopa. Take care! Sarah

Welcome to the forum! Good luck at your upcoming appointment with the rheumatologist. I had this also, and ended up diagnosed with autoimmune conditions. Like Kim mentioned, many POTS patients have underlining autoimmune disorders. Hopefully they can identify yours so that you can begin treating the underlining condition and will notice improvement in your POTS symptoms.

Hi everybody, welcome to DINET!

Hi there, Welcome to DINET! Have you heard of Neurally Medicated Syncope (NCS)/Vasovagal Syncope?  Here are some links with info: http://www.dinet.org/content/information-resources/ncs/

I have IST also, have they recommended Ivabradine for heart rate control?  Hope you find some answers and relief soon!   Sarah

Hi, Welcome to the forum, I'm happy you've made your way here!  This is taken from the DINET "POTS: What to Avoid page" from our main website:   http://www.dinet.org/content/information-resources/pots/pots-what-to-avoid-r101/

Stress will often aggravate the symptoms of POTS. The body is continuously adapting to stress, whether it is physical, mental or chemical. POTS patients sometimes lack the ability to correctly process stress due to malfunctioning or excessive functioning of the autonomic nervous system (ANS). Patients may also already have high levels of norepinephrine, which is a stress hormone. POTS patients need to avoid stress (when possible) and live life at their own pace.   

Specific stresses such as surgery, childbirth and trauma (such as a car accident), viral illness,  have preceded or worsened the development of POTS in some individuals"

Also, here is a link to our physicians list where you can search for a doctor specializing in dysautonomia. http://www.dinet.org/physicians/  Just in case you may need it in the future. I'm glad your pcp is on board with sending you to another cardiologist, hopefully they can diagnose and begin treatment soon. There are non pharmacological measures that you could mention to your pcp while waiting to get into the cardiologist -- Increased fluid intake, Compression stockings, Increased Sodium.  Take care! Sarah

Hi, welcome to DINET! I've moved your topic to this forum ( topics related to dysautonomia) from info and announcements (for DINET related announcements) 

Dr. Blair Grubb is a top dysautonomia/POTS specialist located in Toledo. Not sure how far that is from you. 

Oh that's such great news. Hopefully they can fit her in soon.  DYNA kids has excellent information and resources on their site. Wishing you all the best

Oops, sorry about that,  I saw tx referred to above.   Are you far from columbus? Dr. Jeffrey heyer runs a pots/dysautonomia clinic at nationwide children's hospital. http://www.nationwidechildrens.org/postural-orthostatic-tachycardia-syndrome-clinic

Hi there, have you seen Dr Ian butler or Dr. Nuemen at the dysautonomia clinic at memorial Hermann?

On ‎5‎/‎10‎/‎2017 at 0:50 PM, Bladerunner said:

Do you have pots ? Does the ivabradine help with your standing heart rate ?

Hi, yes I have POTS (hyperadrenergic) and IST (inappropriate sinus tachycardia). Ivabradine lowers both my resting heart rate (IST) and the upright tachycardia from the POTS.  My resting HR is about 70-100bpm now. Before starting this medication a 30 day holter monitor averaged my HR around 130-140bpm.

Wow, welcome to our 52 newest members! Very happy to have read some of your posts and gotten to know you a bit. For those of you who haven't posted please feel free to drop a line. As always let us know if you have any questions