SarahA33

Oh dear toomanyproblems -- so sorry that you are having a rough go of it right now. Are your electrolytes normally abnormal or did they become this way due to the prep? I'd think the prep could cause certain imbalances. Like Ancy was also concerned about, I just hope you'll be able to keep hydrated at home. Please take good care of yourself.

Wishing you well.. Sarah

Hello, Hello Darling Welcome to the forum!

I have POTS and IST, also. I've been diagnosed with POTS w/ hyper component for a while but was just recently (w/in past year 1 1/2 diagnosed w/ IST). I've gotten so much better since I've been correctly diagnosed. I'm glad you have a diagnosis because hopefully now you will be able to make progress, too. Especially when you get the appointment with the pots specialist. In the meantime, it does sound like the EP has given some good info to start w/!

I'm now incorporating about 5-7g of sodium daily, depends on how I feel and what I have going on that day. Some pots patients use sodium tablets, but I couldn't tolerate them because it made my nausea worse. These are the highest content from my journal:

8 oz V8 juice = 420mg (I usually split it in 1/2)

1 cup chicken broth = 860 mg

Sabra Hummus Singles = 260mg (I eat w/ Pretzel's that have 611mg 1cup )

10 black olives = 320 mg

1 cup tortilla chips = 539 mg (w/ 1/2 cup spinach and artichoke dip =377mg)

cottage cheese w/ fruit = 1/2 cup 368mg

1 Bagel = 390mg (Cream Cheese = 1 tablesppn 150mg)

some cereals have a really high sodium content: grape nuts has 580g

sandwiches: lunch meat,a few slices of turkey 360mg, 1 slice of American Cheese = 368mg, and 2 slices of white bread are 280mg combined

1 cup Spaghetti Sauce = 1,000mg

Veggie Burgers = 500mg

Frozen veggies = 1 small package 500mg

Uncle Ben's Microwavable Brown Rice Pouch = 710mg

I think a lot of POTS specialists recommend 2-3 liters of fluids, but everyone is so different so check w/ your doctor. In my case, I was told to split 50% water and 50% electrolyte drinks, etc. I know a lot of members actually make their own, which I'm actually considering because gatoraid seems to be causing heartburn lately. . Poweraid does not, however, so I don't know if it's the dye/coloring they use. I'm really into coconut water recently which comes in plain, orange and pineapple. If anyone has any other suggestions please share because I'll need to supplement the gatoraid w/ something!

I've found the knee-high compression really helpful with dizziness, blurred vision, and brainfog symptoms.

Regarding exercises, the recumbent bike has been most helpful for me. Since I was put on the medication, Ivabradine, I was able to build up to 30-40 min 3-4x per wk and even add in some cardio. I unfortunately have a bad knee at the moment, but I do walk on the treadmill for about 10 minutes (which typically isn't recommended for pots patients because it's an upright exercise). I also lay flat and use ankle weights to do front/side leg lifts, as well as bicep curls, and reverse crunches.

I too deal with temperature regulation issues. It's all part of the autonomic dysfunction.. Best of luck to you and I'm glad you have joined us here! Sarah

Oh, I almost forgot, here is an article related to the effects of POTS/Menstrual Cycle: http://europepmc.org/articles/pmc3413773

Hi Amalia!

There have been quite a few discussions on this in the past actually. I personally don't notice a difference in BP changes before my period, but I get really sick during my period. (maybe blood loss?) Please check out this past thread if you are considering BC: http://forums.dinet.org/index.php?/topic/26812-symptoms-during-period/

Hi Robin, When all of my symptoms began, 8 years ago my dopamine was not detectable also. Twice. Then, it once was 29, and now it's normal. So, I don't know! I've always wondered about that though. What did your doctor say? Mine were more concerned with my elevated norepinephrine which is also measured in that test. It's a catecholamine test. If you would like some info on this, just let me know. I think there may be low dopamine symptoms (weakness, confusion, intense shaking), but I wasn't displaying any of them. Take care, Sarah

Hi, Samip, Here is a link to DINET's support group page on our main site: http://www.dinet.org/index.php/information-resources/support-groups

Unfortunately there aren't any in your area atm. We did just add one a few weeks ago, so please check back from time to time. Thank you! Sarah

Hi All, here is an article from Dysautonomia International's blog. It was written by Dr. Amy Arnold from Vanderbilt University. (I'm not able to paste the link for some reason)

Cognitive Dysfunction and “Brain Fog” in POTS

Cognitive Dysfunction In POTS
by Amy Arnold, PhD

POTS is one of the most frequent forms of chronic orthostatic intolerance, and is a common source of disability among young adults. One of the most common symptoms reported by POTS patients is cognitive dysfunction or “brain fog.” These terms both indicate a loss of brain functioning in areas such as thinking, remembering, concentrating, and reasoning to a level that interferes with daily activities. In our center (Vanderbilt University’s Autonomic Dysfunction Clinic), approximately 80 to 90% of POTS patients report cognitive dysfunction and often describe it as: “difficulty thinking, concentrating, or paying attention; trouble remembering things; cloudy or fuzzy feeling in head; and having problems finding the right words.” This can occureven while patients are lying down or seated, which limits their ability to attend school or to work. While cognitive dysfunction is an almost universal finding in POTS patients, it is still poorly understood.

In response to our patient’s concerns, we designed a study to identify specific problem areas for cognitive function in POTS. We gave a series of standardized neuropsychological tests to POTS patients and compared their responses to healthy subjects matched for age and gender. We studied patients in the seated position, to minimize heart rate changes and related symptoms. We found clinically meaningful impairment in three areas of cognitive function in POTS patients. First, patients had impaired selective attention, or the ability to focus on specific stimuli when several stimuli are presented at the same time. For example, patients were slower and made more mistakes when asked to mark only the numbers 2 and 7 within a long series of numbers. Second, patients had impaired cognitive processing speed, indicating that it took longer to process information. Finally, patients had impaired executive function, indicating problems with planning, organizing information, and adapting to changes. There were no deficits in other areas of brain function including intelligence, memory, reaction time (psychomotor speed), and information retrieval from memory (verbal fluency). Importantly, in our study, there was no association between cognitive dysfunction and psychiatric symptoms such as mild depression or anxiety in POTS patients.

In summary, our study showed that POTS patients have deficits in specific areas of cognitive function including selective attention, processing speed, and executive function. These problems were observed even in the seated position. This may indicate that the cognitive dysfunction in POTS is not due to the increased heart rate and symptoms with standing, but rather may reflect part of the disease itself. Further studies are needed to determine the impact of standing, the underlying causes, and the optimal treatment strategies to manage this cognitive dysfunction.

Is cognitive dysfunction the same as brain fog?
There are several words that have been used to describe the cognitive dysfunction in POTS including brain fog, mental fog, mental fatigue, and mental clouding. These all refer to multiple symptoms that impair intellectual functioning to a level that interferes with daily activities. These symptoms can include difficulty thinking clearly, trouble concentrating or focusing, and mental confusion or lack of mental clarity.

What are the specific tests for cognitive function?
There is not a single test or series of tests used to diagnose cognitive dysfunction. Rather, there are numerous standardized neuropsychological tests that can provide information about different aspects of cognitive function. The basic purpose of these tests is to determine the likelihood of meaningful cognitive impairment, by comparing scores to normative values obtained from healthy subjects of similar age, gender, and education level. A potential limitation is that the tests may not have been validated in every population (such as POTS), and may have lower accuracy to detect changes in patients with mild levels of cognitive dysfunction.

Who can diagnose cognitive dysfunction?
A primary care physician can perform a general screening test for cognitive function, but this may not detect the more subtle changes that we found in POTS. In general, a neuropsychological evaluation is needed to gain a comprehensive understanding of how one’s brain is functioning. This involves a visit with a clinical neuropsychologist who will perform an interview and give a series of validated tests and questionnaires that look at a variety of brain functions such as intelligence, memory, attention, executive function, language, mood, and personality traits. The information from these tests may help in assessing brain function over time or after treatment.

What type(s) of cognitive dysfunction are common in POTS?
Our study showed problems with selective attention, cognitive processing speed, and executive function in POTS patients. Other studies have also shown problems with working memory, or the ability to hold onto and to process new and already-stored information, in POTS patients that also have chronic fatigue syndrome. This impairment in working memory may reflect the additional presence of chronic fatigue syndrome, as problems with memory and concentration have been well described in this patient population. It is important to note that there was a large variability in cognitive test scores in our study, with some POTS patients having scores within the normal range for healthy subjects. Thus, the diagnosis of cognitive dysfunction, and related treatment plans, should be considered on an individual basis.

What is the (suspected) cause of cognitive dysfunction in POTS?
The cause of cognitive dysfunction in POTS is still unknown. There have been several potential causes proposed. First, there is an association between elevated norepinephrine levels and psychiatric disorders such as depression, panic disorder, and attention deficit hyperactivity disorder. Since high levels of norepinephrine in the brain can disrupt cognitive function, it has been proposed that this mechanism could contribute to cognitive dysfunction in POTS patients with elevated norepinephrine levels (hyperadrenergic). We did not find an association between plasma norepinephrine levels and cognitive function in our study in POTS patients, but further studies are needed. Second, studies have shown that a reduction in brain blood flow may contribute to impaired memory in POTS patients with chronic fatigue syndrome. Finally, POTS patients often have other conditions including small fiber peripheral neuropathy, vasovagal syncope, immune system activation, pain, irritable bowel syndrome, and sleep disorders. These could all negatively impact cognitive function and overall mental health.

Is cognitive dysfunction similar to attention deficit hyperactivity disorder (ADHD)? Is using ADHD medication to combat cognitive dysfunction recommended in POTS?
In a previous study, we compared the psychiatric profile of POTS patients to adult patients with ADHD (Vidya Raj and colleagues, Journal of Neurology, Neurosurgery & Psychiatry, 2009). We showed that people with both disorders have difficulty maintaining attention, but that it is more severe in ADHD. Furthermore, POTS patients developed problems with attention later in life and did not show significant hyperactivity, which is opposite to the childhood presence and the common feature of hyperactivity with ADHD. Therefore, the pattern of cognitive dysfunction appears to be different in POTS versus ADHD. The most common treatment for ADHD is the use of stimulants (such as Adderall and Ritalin) to enhance alertness, attention, and memory. There is no information on the effectiveness of ADHD medications in POTS. To address this, we are currently conducting a study examining the effects of the stimulant drug modafinil on cognitive function in POTS patients at the Vanderbilt Autonomic Dysfunction Center. Since there is concern that stimulants could worsen heart rate control in POTS, we are also examining the effect of modafinil in combination with the beta-blocker propranolol. This is the first study addressing treatment strategies to manage cognitive dysfunction in POTS.

Amy Arnold, PhD, is a Research Instructor in the Division of Clinical Pharmacology at the Vanderbilt University School of Medicine. She is also a member of the Vanderbilt Autonomic Dysfunction Center. Her clinical research program focuses on understanding the causes of autonomic nervous system disorders such as POTS and autonomic failure, as well as new treatment strategies for these conditions.

https://www.youtube.com/watch?v=i_mmnauho7g&feature=youtu.be

Hi Andreak,

I'm sorry to read your daughter is going through this right now. how scary. I don't have anything to personally offer other than one of our Medical Advisor's, Dr. Blitshteyn, has written a few articles on POTS and Pregnancy, and I think has done a research a study in this area also. She offers Skype Consults, so I'm not sure if that may be helpful to you all.

Wish I could be of more help. best of luck to you guys!

Sarah

http://www.drblitshteyn.com/
http://www.dinet.org/index.php/about-us/advise

Hi Sarah,

Sorry that you are going through a rough patch right now. Try to remember that this too shall pass. I'm sure it's hard for your parents, and I know in my case, I don't find my support from my parents. (for different reasons though). It's probably a lot for them to see you feeling poorly and maybe they aren't exactly sure what you best need in terms of support. Seeking and Receiving support with a chronic (and invisible) illness can be a struggle at best, especially in the beginning.

I'm sure your boyfriend and parents have the best of intentions. They love you, want to help you and ease as much pain as possible for you. I know in my situation, early in the diagnosis, often those with the best of intentions often ended up getting misconstrued and hurting the most sometimes. Things that were said as compliments would somehow leaving me feeling invalidated and crushed. I'd end up asking myself, "how did we get here again?" I've learned to now cut some slack to those that I love who I know mean well, because it's hard for everybody. It's a real learning curve, and everyone learns quickly without a handbook. My best support comes from my closest friends, my fiancé, and my NP who actually plays the role of a amateur therapist. I don't doubt that you'll find what works for you in terms of support. In the meantime, we're all here for you!

Since the forum is public, sharing location is optional for you, but I wasn't sure if you were close to any of these support groups listed here, just a suggestion! http://www.dinet.org/index.php/information-resources/support-groups

Yeah, Yogini! Fantastic news

Jas,

Has your cardiologist had your catecholamine levels checked? (norepinephrine and epinephrine, as well as dopamine) those are our stress hormones, mainly produced In the adrenal glands, basically responsible for the flight or fight response that we have. This is a good article that explains the basics of them: http://www.webmd.com/hypertension-high-blood-pressure/catecholamines-in-blood

You're very lucky Dr. Raj is close to you. He's also one of DINET's medical advisors. This is a great article by Dr. Raj that talks about lab abnormalities and the various subtypes. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3756553/

Hi, JaS, Welcome to the forum,

I also have Orthostatic Hypertension and POTS w/ the hyperadernergic form. There could be a few reasons why your BP spikes when upright, but Kjay's explanation is the one that my POTS specialist gave to me at the CC. Basically, it's sympathetic discharge and over production of adrenaline. Do you have any symptoms when this happens to you? I sometimes get shaky, forgetful at times, flushed, sweaty,etc.

Your cardiologist may be onto something with the hypovolemia and Florinef, I really suggest talking to he/she about your concerns. . My understanding is that it initially can increase pressures but then as your blood volume starts to expand, it almost works like a salt and water balance, so your pressure balances out. Don't quote me, it has something to do with aldosterone escape.

http://www.dinet.org/index.php/physician-list Here is our physician's List, maybe there is someone in your area that u can find that specializes in dysautonomia and can perform the testing. Best of luck to you, Sarah

Yay, Katie glad your feeling slightly better. You and I are 97. 1 girls! My NP thinks 99. is high for me, bless her heart. But she's one of the few who get it. Feel better soon

Ancy, I can't believe that doctor told you that you spiked your own fever. Goodness gracious. Did you ever see the movie Matilda? I bet you wished you could've used all that telekinetic energy to transfer the super glue to his hair dye! Anyone remember that scene?

Hi there, welcome to the forum!

I'm not sure how far Denver is from Aurora, Colorado. However, there is a specialist on our physician's list, Dr. Jill Schofield who treats POTS, NCS, NOH.
Here is the link to her information: http://www.dinet.org/index.php/index.php?option=com_physicianlist&view=physiciandetail&Itemid=0000&phyid=450

Best of luck to you! Sarah

Hi Josh,

You may want to check out some of this past thread. If you read through it, it talks about various neuropathies.

http://forums.dinet.org/index.php?/topic/23213-cold-area-on-leg-like-water-spilled-on-it/?hl=%2Bcold+%2Bwet+%2Brunning

Josh,

Can you ask your cardiologist for a portable EKG/holter monitor? I had mine for 30 days at the longest, but also for 48 hour periods. When I was having cardiac related events, I would press a button and it would record and send the data to my physician. Sorry you haven't been able to get to the bottom of this yet. Hang in there!

Hi, dm -- Have you had an EEG? Also, these links include information on Neurocardiogenic Syncope - NCS, a form of dysautonomia. During the fainting episodes, some patients have seizure like activity. http://dinet.org/index.php/information-resources/ncs/ncs-general-information http://dinet.org/index.php/information-resources/ncs/ncs-links

low grade fever, Not sure if all these are related but they could offer some theories or ideas

http://forums.dinet.org/index.php?/topic/27101-do-we-get-a-fever-when-sick/?hl=%2Blow+%2Bgrade+%2Bfever#entry251978

http://forums.dinet.org/index.php?/topic/25304-body-temp-weirdness-anyone/?hl=%2Blow+%2Bgrade+%2Bfever#entry235944

http://forums.dinet.org/index.php?/topic/23545-anyone-with-pots-feel-feverish-a-lot/?hl=%2Blow+%2Bgrade+%2Bfever#entry219938

Propranolol:

http://forums.dinet.org/index.php?/topic/27095-hyperadrenergic-pots/

http://forums.dinet.org/index.php?/topic/24990-bp-meds-designed-to-lower-bp-make-mine-go-up/?hl=%2Bpropranolol+%2Bopposite

Hi, Sarah,

Were your BPs raising before you started the Florinef? Just wondering because Florinef basically helps the kidneys hold onto fluids/water and sodium, which in return increases our blood volume and blood pressure. So it's really great that you bought the BP monitor to check your vitals!

Anyway, I have read a few posts about propranolol increasing BP's initially if I remember right. Are you on the short acting or the LA form of it? Also, regarding the low grade fevers, I run temps around 99 also when I get a fever. I typically have a temp of 97-ish. A lot of us w/ POTS or autonomic dysfunction have trouble with temperature regulation. There have been recent posts on this, i'll try to find them for you real quick.

I found this article for you on the side effects of propranolol, it mentions GI symptoms. http://www.mayoclinic.org/drugs-supplements/propranolol-oral-route/side-effects/DRG-20071164

Hi Robin,

Welcome to the forum!

Katie made a really good suggestion about having the cardiologist who diagnosed you send the results to your primary. I think this could be really useful for you, so that he sees a diagnosis on paper. Also, I know you mentioned that you have an upcoming appt with a specialist in February (good luck btw!), in my experience, most GP's will refer out for these specific cases and take the recommendations of the specialists. So, my advice would be to schedule a follow up appointment with your GP after the specialist and make sure all the testing/office notes are forwarded.

Wishing you the best,

Sarah

Lewis, I'm planning on talking to my pots spec. This week about provigil. I've heard some really positive things from friends w/ pots who take this for cognitive issues. Vanderbilt is currently doing research regarding this also.

Hello!

I hope you are recovering well from your tilt table!

I second Kitt's suggestion of looking into catecholamine levels. Perhaps your doctor will be on board with this. I hope you don't mind that I share my thoughts on Catecholamine testing. Catecholamines (Norepinephrine and Epinephrine) are stress hormones and basically responsible for the fight or fight response. My understanding is that our adrenal's produce a lot of this hormone which then can increase heart rate and blood pressure. I also have high Norepinephrine levels, very common in POTS w/ a hyper component, and I often have tremors, palpatations, headaches, high BP, sweating, all of which is helped immensely by Clonidine and Propranolol, both of which are known to suppress adrenalin. In my case, I know my anxiety is tied into all this, as the propranolol, Clonidine and Ativan work so well for symptom relief. Ivabradine controls the tachycardia, but the med combo above helps to keep my symptoms at bay.

Also, with hypovolemic POTS patients, they can experience high catecholamine levels also. The low blood volume causes the body to release adrenaline I believe. I also think that low blood pressure or having BP that is constantly trying to regulate itself might cause adrenalin to be produced. Of course, I'm not a doctor, so this is all just my best attempt at helping you find new ideas and possibly and Oprah AHA moment! Possibly you can bring this up to your doctors.

Regarding the testing for this, I had mine initially done during my tilt table. Then, I had also it done at the lab. I had to sit for an hour in a room before the tech collected the samples. The last time I had it done was in Cleveland during the blood volume testing, supine and upright. I've also had it done with a 24 hour Urine Collection. These links are really useful: http://www.dinet.org/index.php/information-resources/pots-place/pots-detection and this article is great https://lethargicsmiles.wordpress.com/2013/09/27/how-would-a-doctor-determine-if-i-have-hyperadrenergic-pots-all-about-catecholamine-testing-in-pots/

Take care!

Sarah

Hi Firewatcher, I've searched for the abstract also using other medical journals and can't find it either. Hm... will keep looking, though!

However, I wondered if you might find this helpful. I did see this FB post from the Dysautonomia Clinic, owned by Dr. Blitshteyn, who is one of DINET's trusted medical advisors.

She said the following when posting the article link, Row, Row, Row Your Way to Treating Postural Orthostatic Tachycardia Syndrome by Dr. Raj:

"Dysautonomia Clinic, January 15 at 1:39pm ·

The following key points are suggested by Dr. Raj regarding POTS and exercise:

1. Exercise is a treatment…not a cure.

2. The key to the program is to initially avoid upright exercises and instead focus on exercises where one has a “small gravitational profile”. Rowing machines were the preferred mode of

exercise. These provide an excellent aerobic workout, provide some leg muscle resistance training, and patients are seated in a squat position. Recumbent cycles or swimming are reasonable alternatives.

3. Some POTS patients may have co-morbid issues that make certain exercise programs impractical. For example, POTS patients with joint hypermobility may be prone to hip or patellar dislocations that may preclude the use of rowing machines. Swimming may be a more joint-friendly option in these

cases.

4. Exercise duration and consistency are important. Early during the exercise program, POTS patients should increase their duration of aerobic training to 30 minutes continuously per session. Patients should plan on exercising every other day. Once or twice per week will not likely be adequate.

5. Set realistic expectations. One challenge is that exercise is often spoken about in glowing terms. This can set the expectation that patients should feel better with exercise. In the short-term that will not be true as POTS patients will feel more fatigued before they start to feel better. It can take 4-6 weeks of regular activity before patients start to notice any improvement. If patients

do not know to expect this delayed gratification, there is a good chance that they will prematurely discontinue the program."

Dr. B on our medical advisors page: http://www.dinet.org/index.php/about-us/advise

Hi, Lindz,

I'm so sorry that you are going through a difficult time right now. Have you been to Mayo or heard of Dr. Thomas Chelimsky? I think he sees MSA patients in his clinical practice and is also a physician advocate for an MSA organization. Perhaps someone who has a great deal of experience in this area could be your next step? I'm sure this has to be so overwhelming for you and your family. Please know that we are here to listen and offer support, I'm glad that you've reached out to us!