SarahA33

More DINET and Awareness images created By our volunteer, Rachel Faith Cox. Thanks so much Rachel.

Welcome, everyone!

Hi Rennee. Welcome to DINET. I can't offer anything about the anti-depressants, but I do take Corlanor for my HR, also. I also take Ativan, Clonidine and PRN Propranolol. I feel like I must be missing something, that list looks short, lol.

Hi, Morgan, happy you've made your way back. I'm thrilled for you that you are off the meds and have a correct diagnosis. How fantastic that you are feeling well these days

The DINET Newsletter, Dysautonomia News, September Edition is out... Click here to Download your copy today: http://dinet.org/index.php/information-resources/newsletters Thanks to our editor, volunteers and medical advisors for making another great edition!

In the spirit of Dysautonomia Awareness Month, newsletter volunteer and member, Rachel Faith Cox created the following awareness ribbons for Forum & Facebook Profiles and a graphic to be used. Thanks so much Rachel, and please feel free to use these. Happy Awareness Month!

As a part of Dysautonomia Awareness month, we are excited to be sharing with you the stories of a few different Dysautonomia Warriors; because when it comes down to it each and every one of us, who bravely battles this condition has the courage and strength of a warrior inside! Check out the Dysautonomia Information Network (DINET) facebook page to view some of our volunteers and members bravely sharing their stories and a glimpse into their lives. A new warrior will be added throughout the month of October, in honor of Dysautonomia Awareness Month. Don't forget to show your support to these individuals for helping to spread awareness! View our main website in order to connect. http://dinet.org

momandmore - I believe you are correct in that Jessica should make sure the tilt table will be safe for her. That didn't even cross my mind at first, glad you mentioned that. If anyone is curious about the "poor man's tilt" it's now clinically referred to as the "Active Stand Test", here is an article on it: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3478101/

Very happy to hear this, Roxy! Having a "quarterback" that you can trust is so important. Good luck at your appointments w/ the specialists! Sarah

Hi, Jessica, welcome to DINET. I know there is a list of medications to refrain from before a tilt table, however I was on my BB before and during my tilt. It was too dangerous for me to go off of it. I ended up having a terrible tilt and confirmed POTS regardless of the BB in my system. Like Katie suggested, talking to the doctor performing the test can hopefully guide you. I also saw that you mentioned you have symptoms while lying down, has anyone tested for Inappropriate Sinus Tachycardia (IST)? I was diagnosed many years ago w/ POTS (hyperadrenergic component) and 2 years ago w/ IST also. I had the increase of HR upon standing, but also a fast HR and dizziness while laying down. The fact that my symptoms didn't relieve when I was supine coupled with the tachycardia both during the day and at night, led my doctor to diagnose that also. Have you seen our physician's list? It lists doctors who specialize in Dysautonomia/POTS and you can search by location, specialty, etc. It's maintained by Katie and is updated regularly so the information provided is current. Again, welcome to the forums and wishing you the best! Sarah

Hi Sarah, I hope your as well as can be! It was fantastic! The falls are so beautiful and breathtaking. It was really awesome to watch them light up for dysautonomia. It made me think of all the friends I've made and members I've known, wishing you were all there. visit out our dinet facebook page for a live video I recorded of the falls.

That is weird! But it's kind of like a lot of meds Rx'ed for POTS symptoms, one person can have complete relief while it sends another into a crash. Just checking in to see how your BP is doing.

Oh I forgot to add this above, sorry. I also have a seizure disorder. Majority of medications didn't control the seizures, so they considered it refractory seizures. I had a great deal of anxiety about having another seizure. I was fortunate that I made my way to the Cleveland Clinic for consults and treatment. They were able to correctly diagnose and start me on the correct meds. I haven't had a seizure since Dec. 2014. The seizure med I'm on is Fycompa, it's new.

Gertie, I don't know the official cause of this, but a lot of pots patients suffer from what is called night tremors. My theory is that it's adrenaline surges. I used to wake up trembling, sweaty (and not to be too graphic, but I mean drenched), then I'd layer because I would then be freezing. Terrible. This cycle definitely added to my insomnia. So sorry your going through something similar as well. what helped me is clonidine. Its a Bp lowering agent that blocks norepinephrine (adrenaline) and can also cause drowsiness so its sometimes used for sleep. Since increasing my dose on this, I haven't had any night tremors. Its great, and my sleep has improved a great deal. Take care.

Niagara Falls will be lit turquoise this evening, October 1st, 2016, in honor of Dysautonomia Awareness Month! How exciting! Through the help of Dysautonomia International, Niagara Falls will be shining Turquoise from 10p-10:15p. I will be attending on the American Side, hopefully anyone else in the area can join me! Here is the schedule incase your interested:http://www.niagaraparks.com/niagara-falls-attractions/niagara-falls-illumination.html It's fantastic to see Awareness Spreading!

Hello, all! Dysautonomia Awareness Month officially begins in just a few short hours, October 1st. With the help of our members and doctors specializing in Dysautonomia, DINET produced a documentary titled, "Changes: Living with Postural Orthostatic Tachycardia Syndrome". Whether you've seen this video in the past or are watching it for the first time, it's a wonderful video that discusses the experiences of patients with POTS & features experts who specialize in and treat Dysautonomia. Please help kick off Dysautonomia Awareness Month! Share with those in your life who would appreciate this, as well as those who could benefit from further understanding Dysautonomia & POTS. Trailer Above & Full Length Video Below: Full Length Video:

Hi, Rachel. Sorry I am unable to comment on the rsd/crps. A big welcome to the forum. I saw in your original post that your headed to the CC. I've been going there for 2 years now and have made such great progress w/ my POTS. My doctors there are wonderful and so unbelievably bright. I felt a lot like you do in the beginning, but the doctors there have never dismissed my concerns/symptoms, answer every question I had, spend a time with me and don't make you feel rushed or like another #. None of my local dr's had experience with my condition or seen patients present so severely. The dr's at CC knew how to help me. I was also very athletic before getting sick. A lot of us here on the forum describe that pattern. I'm happy that you found us, I hope things get easier for you soon.

The ER thing is interesting. I know the majority of us w/ POTS have a high sodium diet, and I look at the grams of sodium in a lot of food and can't imagine how most of the population are able to cut their sodium back. I just had progresso soup and the content was 830 mg of sodium. I can't believe the wait list for the nephrologist is a year! Geesh. Hopefully your dr. can get you in faster, or recommend someone else. My htn spec. knows the ins and outs of BP meds & electrolyte imbalances, orthostatic hyper/hypo-tension, he also handled my kidney stones and uti's. He's fantastic. Sorry to hear about the dye. Was that similar to the dye used in a CT? I had no idea that affected the kidneys.

My Bp is erratic as well. It will spike as high as yours was above, and then some days it'll bottom out. I carry clonidine and midodrine with me, completely opposite meds - but my BP is up and down all the time. I started seeing a nephrologist (hypertension spec.) before I was diagnosed. He is the doctor who ended up diagnosing me, and he handles my pots locally. Other than the dr's I see in Cleveland, the htn Dr. has been the most helpful doctor I've seen.

Great to see that you've all joined our community! Welcome Roxy - Thank you for sharing your experiences with DINET, it's so nice to hear your feedback!

Hi, Therussianmoose, wanted to welcome you to the forum! Glad that Katie and DG have posted such helpful info. Wishing you luck during your biopsy.

Hi, Kris! Re: your home BP monitor, I bring mine every few months to the doctor's office so they can check if the reading's match up.

I am so relieved for you, Kris that the nadolol is helping. It's about time you've caught a break. I know that feeling all too well that you describe, it's basically like you don't want them to find anything wrong with you in their testing, but at the same time you hope something is found that can be removed, fixed. etc. It's really terrible and confusing when you have this thought process.

Hi im4god, Really bummed out to hear that you have to deal with gastroparesis in addition to your Dysautonomia diagnosis. It's no fun! I have this also. I wanted to share a recent conversation with my GI doctor regarding this. My abdominal pain was horrendous and I was vomiting basically every morning. I learned a great deal and I was upfront that this was now affecting my life. He said the Dysautonomia diagnosis complicates things, but I never knew it was technically a neuromuscular disorder. The stomach is technically not paralyzed like I originally thought and it seems to be both a sensory/muscle problem (neuromuscular disorder) Some tips incase you or others aren't aware.. My dr. told me to stop eating after 6pm, as in the evening we're obviously more prone to lying down, and he thought gravity would basically help pull the food down so that it wasn't just sitting there all night. I haven't thrown up since I've done this! Yay! He also rec. eating smaller portions throughout the day and if possible, take a small walk or do something requiring movement after eating. I have had the emptying test (which for those unfamiliar is a test where you eat a meal, then watch the pace at which it empties & measures the amount of food left in stomach at 30,60, 90 and 120 min. I was given a radio-traceable egg, toast and a glass of water - to measure both solid and liquid) This is apparently a gold standard in gastro testing, so at this point I'm just waiting for my insurance to approve a dietician/nutrition visit to go over "FODMAP diet (low Fermentable Oligosaccharides, Disaccharide, Monosaccharides and Polyols). I haven't really done any research on my own about this diet - I think it is carb's that are found in a lot of foods. If you or anyone has heard of this I'd appreciate the feedback. Also, he said Zofran is used by a lot of doctors but he doesn't rec. that since it's not effective at all in emptying and only controls nausea. (Not for me b/c I'm allergic to it) so he has put me on Meclizine Rx - this is off label use as Meclizine is an Rx Antihistmaine and used for Vertigo. This has helped nausea and gastro pain (abdominal cramping, burning right between my belly button and chest. Literally right under my chest, above the ribcage & indigestion on a routine basis). He said if this didn't work, we would try another anti-histamine rx, Ceproheptadine, which controls gastro symptoms, also this is neurotransmitter that effects serotonin ( so I wonder about the gut/brain barrier as he explained a lot of serotonin is produced in the gut) it also has calcium channel blocker properties. I wonder about this however because I take ivabradine for my HR and one of it's major interactions are calcium channel blockers. Off topic, lol. I did have the "breath test" also, where you breathe into the machine filled with a powder mix to rule out bacterial infections "gastric infection vs mechanical infection" he referred to it as I believe. I tested negative for this. So, again, just thought I'd share some things he mentioned. If anyone has any tips on their treatment I'd very much like to hear. Wishing you all the best!

Kris, So sorry to hear your going through all this. Interesting about the GI Psychologist. There is a GI psych at a major University here who is an Gastroenterologist and dually certified in Psychiatry. I read about this at my GI's office - they advertised a study recruiting for IBS within this very specialty. I know at a major clinic they have an intensive migraine program. It's a 4 week very intensive program, and on top of the migraine specialist, you also see internal medicine, a dietician, a pharmacist, pain management doctor, and sleep medicine after having a sleep study completed. They have diagnostic testing and physical therapy/neuromuscular rehab consults during this program, too. They also have a portion of the program, which is not optional, spent with a Psychiatrist. They also require attendance in the patient support therapy group, which is led by a Social Worker. During the psychiatry portion, they use biofeedback, modification techniques, relaxation counseling, and meditation. From my understanding the reasoning behind this is that while migraines are not a psychiatric disorder, but as they start to occur in frequency or become more painful and chronic, or the migraines start to interfere with living your daily life, it may get more difficult to manage and the chances of developing depression and anxiety may go up, which can also worsen existing migraines or cause a new/additional type, like tension headache. So I guess basically in some patients, you can develop comorbid disorders which is reactionary from the initial diagnosis. The program assigns you a health coach that manages your program while your there and follow up care. When I spoke with one, she said Migraine sufferers can sometimes develop a pattern, mostly for coping with the physical and emotional effects, and not always realize it's detrimental. I wanted to attend this program more than anything while my migraines were at their peak. I personally felt if we (myself and current doctors) were missing something that could help to reduce the frequency/intensity and improve my quality of my life then I'd go commit to all aspects of this. I can see how this gets complicated and scary for a lot of POTS patients since POTS can initially be misdiagnosed as Anxiety. When I first got sick, GI and migraine symptoms were the first to emerge. I had a primary doctor (that I fired immediately) that told me since I was a young girl in college and working that I couldn't handle stress as well as quote "His son my age". He then proceeded to tell me my BP was high because I was stressing from PMS. Horrible! I've had chronic illness management counseling and my biggest concern was that it could affect my current/future treatment somehow. This was some time ago, but I fortunately had a good initial experience and the psychiatrist was very familiar with stress hormones, like catecholamine's. He recommended that I be tested for a pheo since my NE were quite elevated and people often have associated secondary anxiety from the adrenaline surges from the primary condition. I hope I explained that right, lol. . He also diagnosed me with anxiety and said many of the POTS symptoms are severe and possibly adrenaline fueled. Anyway, just my experience. One of the most important things DINET focuses on is raising awareness among physicians and hoping to reduce the diagnosis time, misdiagnoses, before correctly identified and promoting knowledge of autonomic system to both patients and doctors.