SarahA33

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!

Hi Dancer! I'm sorry that you had to cut your hours back recently. Yesterday sounded like it must have been difficult, I know from your past posts that you have a real passion for what you do. Don't lose hope, though.. I've always thought you sounded like a strong person. I had to stop working 2 years ago and it was the hardest decision I've ever made. I used to coach cheerleading and compete also, when I first started to get sick I had to stop that as well. That was immensely difficult as that was a huge passion of mine. Like you mentioned though, you already have more energy.. which is great news. That was the same in my case, I was able to focus more on getting better and taking care of myself (which I think for women in general tends to get put 2nd), I could really put the effort into going to appointments and treatments. Regarding the test results, I can't believe you've been waiting since August for the results! It might help to have your primary/general physician to send a request for the report if he/she hasn't already? Also, how far away is the clinic where you had the testing? You could always go there in person. Take care! Sarah

Hi, Ajax, Welcome to the forum. Like ancy said, POTS is heart rate increase of 30 beat per minute (bpm) or absolute rate exceeding 120 bpm within the first 10 minutes of standing. That's a lot of info that you've got there! That'll be great to bring to the upcoming doctors appointment with you. Hopefully this neurologist is knowledgeable in treating pots/dysautonomia, if not DINET has a list of physicians that specializes in dys/and you can search by location: http://www.dinet.org/index.php/physician-list Many members have presented with lyme infections and POTS/dysautonomia symptoms, so that might be a good topic to bring up to your neurologist about. Theres a search box in the upper corner of the screen where you can find a lot of past topics on this subject in particular. I have really awful heat intolerance also. Good luck on your tilt table test with the neuro, and becareful doing the ones at home! Hopefully the results can lead to a diagnosis which can then help you manage your symptoms. Again, welcome to the forum. Ssarah

Hi there Russian Anchor, Welcome.. The others gave tons of ideas and great tips already. My only suggestion would be to seek out the help of your primary care physician They can order a holter monitor which would at least pick up on the palpatations and rx bb's if that would help in your case. and then possibly send you to another physician who specializes in autonomic workup's. Here is a link to out physician list site: http://www.dinet.org/index.php/physician-list (If there isn't anyone other than your co-worker on the list, hopefully your GP will have a suggestion, but try major universities and clinics that have Electrophysiology and Exercise Labs as a last resort.) Wishing you better days ahead! Sarah

Itsmylife, How are you doing today? Perhaps if you still aren't feeling well, It might be a good idea to give the pharmacist a call or your cardiologist. Let us know how you're feeling if you are up to it Sarah

Hi all, This excerpt might be of interest to you if your looking for stats on delivery: http://www.tandfonline.com/doi/pdf/10.3109/14767050903265089 These last few links are from Dr. Svetlana Blitstheyn, a renowned POTS neurologist who also happens to be one of DINET's Medical Advisor's! http://www.dinet.org/index.php/about-us/advise and here is her site http://drblitshteyn.com/ http://www.dysautonomiainternational.org/blog/wordpress/pots-and-pregnancy-safety-and-other-concerns/ http://www.tandfonline.com/doi/abs/10.3109/14767058.2011.648671?src=recsys

Mike -- Have wondered how you've been! Hopefully you and your spouse enjoyed the holidays and had a really nice time together. How are you both feeling? I will hope that 2016 brings improved sleep for you! All my best, Sarah

Good luck at your appointment BT. Hope everything goes alright.

Hi Faye! This post may help! http://forums.dinet.org/index.php?/topic/27101-do-we-get-a-fever-when-sick/ Also, just wanted to let you know that I'm glad your making progress regarding your diagnosis. Sounds like you are headed in the right direction! Happy New Year, hope your cold passes soon! Sarah

I don't think a lot of doctor's have made a co-diagnosis yet. I agree with you that we need research on this. It took me years to get a diagnosis of both IST and POTS. Even with my HR being incessantly high even when I was supine and reaching well into the 200's at times. Dr. Fogros has written a few articles about the overlaps of IST and dysautonomia. I'm wishing you the best at your upcoming appointments Rich. Late onset of CF is rare right? I hope that testing is negative. Regarding the mito doctor, I hope you will get some answers. I know you really deal with a lot, I hope they can help. I considered going to the wellness center at the cc a while back, however, I don't think its covered by insurance (if we're thinking of the same branch). It's pretty expensive from what I can remember but I'm sure it's fantastic. Sarah I just wanted to share this: "Inappropriate Sinus Tachycardia (IAST) IAST is a form of focal atrial tachycardia that originates from the superior aspect of the crista terminalis or terminal crest, in the sinus node region. Figure 4 shows an ‘atrial floor plan’ that demonstrates the relationship of structures within the atria. The crista terminalis can be seen in the right atrium. IAST has been difficult to classify; two theories exist for its origin, one being an abnormality of SA nodal function and the other possibly a dysautonomia. The arrhythmia is characterized by a resting heart rate over 100 bpm or a heart rate that increases to over 100 with just minimal exertion or as a response to stress. The heart rate may drop into the 80s during sleep. The P wave seen is the same as in normal sinus rhythm. The onset and termination of the rhythm are gradual. The rhythm is noninducible in the EP lab, and responds to carotid sinus massage with slowing but not termination.2 Patients correlate their symptoms with actual documentation of the tachycardia. Differential diagnoses may include right atrial tachycardia and postural orthostatic tachycardia syndrome (POTS). IAST seems to occur most often in young women aged 15-50.4,5 Symptoms include palpitations, dizziness, syncope, orthostatic intolerance, chest pain, headache, myalgia, dyspnea, anxiety, depression, reduced exercise tolerance, and abdominal discomfort. Symptoms may be present for months or years. Some cases have followed a viral illness or physical trauma. The two theories that have been proposed for the etiology of the rhythm are excessive autonomic tone or abnormal sinus node function. The excessive autonomic tone or dysautonomia hypothesis suggests that there is a loss of autonomic balance, with either the sympathetic dominating or the parasympathetic being blunted. It is important to keep in mind that dysautonomias are often inherited. The abnormal sinus node function hypothesis suggests that the SA node may be structurally abnormal, leading to an enhanced heart rate response to epinephrine.6 Ultimately these abnormalities both lead to a loss of heart rate variability. Treatment options include ablative and noninvasive approaches. The ablative approach to management involves modification of the SA node. After ablation, immediate response may be favorable, but long-term success rates have been disappointing.5-7 The noninvasive management includes avoidance of possible event triggers. Antiarrhythmic drugs that have been found useful include beta-blocking agents, calcium-channel blockers, and class IC agents. Because of the autonomic trigger mechanism that may be responsible for initiation of the tachycardia episodes, adjunctive therapies such as aerobic training, biofeedback, and meditation, which aim to decrease the sympathetic component, are also being tried." http://www.eplabdigest.com/articles/The-Other-Sinus-Tachycardias

Dizzygirls, I edited the title for you. Happy New Year to you and the girls I've not been on Pindolol, but have had luck with Propranolol (helps with HR, BP, migraines, anxiety, adrenaline spikes ) Sorry the girls didn't have success with verapamil. It's all about trial and error as you well know! Wishing you all good luck at their appointment at UCSF! Sarah

Hi there, Sorry I'm late here. Everyone has given great tips. The only one I have to add is perhaps using a Bp cuff as a tourniquet. That always seems to help the nurses at my infusions center! Along with a heating pad and bottle of water! I hope the ivig works for you. Hope you are feeling better soon. Sarah

Hi Rich, I have both pots and ist. I think that's why I responded well to the ivabradine, did you go back on it yet? Also, how are you feeling? Hope that antibiodic helped you out. I get hit hard from infections. Uti's, etc, anything with fevers seem to knock me down. I go back to Cleveland in a few weeks. They help me such a great deal, I hope this time they'll be able to work their magic again! Happy holidays, take care, Sarah

Hi essie, I'm in buffalo and there aren't any in western new York that I'm aware of unfortunately. Welcome to the forum!

Welcome, all!

HI Lisa, welcome to DINET. Here is a past forum topic that you might find helpful: http://forums.dinet.org/index.php?/topic/26993-stand-up-test-without-tilt-table/ It's an article about the comparison's of a standing tilt table test -vs- Standing Hemodynamics. Clinical symptoms that you have mentioned are really important also, lightheadedness, weakness, fatigue, GI symptoms, and headaches, also the skipped beats (which can sometimes be palpatations)I'm really sorry that you are going through all of this. I know that many members are from the UK on the forum and have mentioned hospitals, centers, and such. There is search option at the top of the page, perhaps you could try searching a few topics. On another note, I agree with Katie that you should possibly look into narcolepsy and relations. Take care, Sarah

Hi Josh, I encourage you to consult a doctor if your having stroke-like symptoms. We can give our own personal experiences, information we've learned along the way, etc., but we aren't a substitute for your doctor. Please consider calling him. In my opinion, it could be blood pooling, especially with the pics you showed the other day. It isn't just specific in the lower extremities. Keep us posted and I hope you feel better, Sarah

oops, sorry. Here comes my brain fog, lol! It sounds like you've at least got doctors who are completing the ans testing and trying new medications with you, which is a positive. I know you mentioned you are having issues with coreg that you are working through, have you tried any other alpha betas yet? I know lebatalol has been a popular choice. I've always been a bit fearful of the stimulants because of sleep issues that I have had. Do you think they have affected your sleep patterns at all?

I've actually never heard of that before..sympathetic dominance. My best guess is that it would be your sympathetic nervous system dominating your parasympathetic nervous system possibly? Maybe someone here can chime in if they have info on this. Sorry I couldn't help!

Hi there, abc. Welcome to DINET! Have you been checked for fibromyalgia? Some of the symptoms you mentioned made me think of an article I read a while back. Brain fog (or Fibro fog), muscle pain and weakness, insomnia and sleep issues, extreme fatigue. Here are the articles in case you are interested: http://fibromyalgia.com/index.php/article/item/35-dysautonomia-in-fibromyalgia-just-what-is-that-funny-feeling-i-have/35-dysautonomia-in-fibromyalgia-just-what-is-that-funny-feeling-i-have , http://www.ncbi.nlm.nih.gov/pubmed/19007537 , http://www.webmd.com/fibromyalgia/understanding-fibromyalgia-symptoms I'm not sure what you meant when you shared this, would you mind explaining a bit more? "On my last ANS test (I don't have the results of it with me, but I remember this particular piece of data) I had a 0.5 on sympathetic dominance for my baseline" Sorry to hear that your going through a hard time with the fatigue, amongst your other symptoms. I hope that things improve for you soon. Sarah

This procedure, ccsvi is quite controversial. One of the doctors who completes the procedure on dysautonomia patients basically inserts a balloon into the jugular veins and believes that when he dilates the veins that symptoms improve or disappear. The procedure costs $8,000.00 and isn't covered by insurance nor is it approved by the FDA. The procedure was originally designed for MS patients and large studies in Italy and the US were then conducted and found not be particularly safe or proved to be helpful long term, and the side effects may range from worsening of symptoms, intracranial hemorrhage, stent migration into a renal vein, thrombosis and nerve compression syndrome, so I highly recommend that you discuss the pro's and con's of this with your doctor.

It was a pretty close call back in 2010 if I remember correctly. The frustrating part is that it wouldn't have been taken off of the market for safety or effectiveness concerns. Like you said, it's about red tape with clinical trials basically. I get nervous every time I pick up my scripts and it's on back order! I also worry about this issue happening with Ivabradine (corlanor) since it was fast tracked by the FDA in May. I hope we don't run into this problem with this medication in the future. I know Midodrine was fast tracked also. A big concern if midodrine goes off the market is the lack of similar drugs (Not like Beta Blocker's where you can try 5 different type's!) The only other medication that I'm aware of approved for orthostatic hypotension is Northera. I don't see that mentioned all that much on the forum. I wonder if that is fast acting like midodrine and provides similar benefits. I take midodrine as a prn, so not sure if northera can be used in that way.