Kellysavedbygrace

It is a double blind trial so thus far I don't know which drugs have been tried. I've had 3 days of med trials and today is my fourth. So I don't know and the nurses don't know whether I have the placebo or the medicine. The medicine comes to the nurses in a special sealed little envelope. Prior to starting the trials I had to read and sign consent forms which gave me a list of about 8-10 different drugs that might be tested during my stay. I think at the end they will tell me which ones I tried. I'll post about the ending consultation later this week. My last day is Tuesday. I am scheduled to leave at noon. I believe I will get an IV of saline fluids before I go. To volunteer you go online to Vanderbilt's Autonomic Dysfunction Center site and complete the application to be a research patient. They may also ask for additional medical records. The first 23 hours you are admitted "for observation.". This is the final screening. Basically they are looking to see if you clinically demonstrate autonomic dysfunction. Any autonomic disorder may qualify. They are doing ongoing trials on POTS, while here, I'm involved in 5-6 different studies. They also do studies on OH, NCS, MSA and PAF. I began the application process in early fall last year. By November I was invited to participate. We scheduled the visit for mid January when the kids were already back to school. So far all the patients I know of have come from out of town (Florida, Arizona and Delaware) so I don't think it matters where you live. They only take adults 18 or older.

SATURDAY I was awakened early (6:15 a.m.) to prepare for a 4 hour medicine trial. You know that feeling of waking up and feeling like you have had little to no rest? So after preparations such as vitals and breakfast I went back to bed. After two hours I was awakened and still felt bad with headache, lightheadedness and this persistent chemical tingling feeling throughout. The medicine trial involves a 30 minute baseline seated time after which they take you blood pressure seated and then standing after 1 min, 3 mins, 5 mins and 10 mins then they ask you to rate your symptoms on a scale of 1-10. Along with this is a urine collection. I am so impressed with how consciencious the staff is in keeping detailed accounts of my vitals, symptoms and study protocols. With the help of a couple of full length feature movies and a nurse who kept my spirits up despite my symptoms I made it through the four hour trial with increasing brain fog and fatigue. Lunch of chicken, peas, potatoes and fruit was my reward. After lunch I fell asleep and was in dire need of recovery. To my delight, I was awakened by Dr. Robertson, founder and medical director of the Autonomic Dysfunction Center ( who is covering my case while Dr. Biaggioni is out of town.). Warm, kind, patient and brilliant describe my impression of him after a 20 min visit. I am so thankful for the work he is doing here. Without the work of this center and a handful of others around the world we would all still be trying to convince our doctors that we have something else wrong other than anxiety disorder. Dr. Robertson took a genuine interest and concern in me and my particular case. But what is striking is that I later learned he came all the way to the hospital just to visit me, his only patient. I am humbled and honored by his attention to me. SUNDAY I was awakened this morning by Sachin, one of the researchers here, who put on my 24 HR holter monitor. Thank goodness I feel better today. I streamed church in on my laptop in the morning and exercised for fun and took a walk outddors with one of the nurses for the first time since Monday this afternoon. At about 4pm Dr. Robertson came again to check in on me. Again, I am his only patient. He left his home this weekend and came just to visit me. How blessed I am to be here surrounded by people who care and know so much more than me about POTS. A refreshing change in the doctor patient relationship.

That is a great explanation of NO effects as it relates to sun exposure. Makes me want to go out and get fresh air now.

I have had 3 abnormal tilts and 2 normal QSARTS. Yet, I have pronounced parasthesias (tingling, numbness, burning, ice cold, feelings) both centrally and peripherally. And, I have lost my ability to sweat normally. So I full expected to have abnormal QSARTS. Funny thing I that it seems I have so many neuro issues I was surprised this was normal. Also, all myl autonomic reflexes are intact. Well I should restate that- my reflexes are exaggerated so I have the hyperadrenergic form of POTS confirmed by elevated NE levels. According to Dr. Biaggioni at Vanderbilt approx 1/3 of POTS patients have normal QSARTS which means that about 2/3rds have small fiber neuropathy as stated above. Neuropathic POTS is one subtype of POTS that describes those that have POTS that also have small fiber nerve involvement. Patients can have multiple subtypes.

FRIDAY Feeling much better today even though they took lots of blood. This morning I was awakened early by Dr. Raj for the Total Blood Volume test which involved an early morning IV insertion and lying flat for a couple of hours while they drew blood and injected me with 1cc of radioactive substance which binds to the red blood cells. This was followed by a time of sitting/standing upright for 30 mins. After that I had a late breakfast and had to fast before lunch for my 2pm endothelial studies. They began by inserting a little metal coil on the inside of my vein and scraped a few cells from the endothelial wall of my vein. (Sounds really bad but I couldn't feel it, the thought was worse than reality.). Then they looked at my veins under the ultrasound and measured my circulation with peripheral monitors. After the test I had a late lunch, rested and got a little exercise on the recumbent bike here on the unit. Now I'm resting in my room about ready to watch a movie on my laptop. I am amazed by this department. It is so nice to be in a place where most everyone knows more about POTS than me.

Yeah! I feel like that is another win for all of us. The more SS approves our cases the further we spread awareness that although POTS patients look good on the outside, many of us are fully disabled. Out of curiosity what was the diagnosis, if you know it, for which you were approved?

Kitt, Dr. Biaggioni has mentioned Methyldopa to me while I've been here. It is an older drug that works is similar to Clonidine but he recommends it over Clonidine for me. I know our cases have some similarities. I'll get more info about it from him when I meet with him at the end of my stay here at Vandy and circle back with you.

THURSDAY I didn't sleep well last night and awakened in my typical POTS crash state- bad brain fog, fatigue, parasthesias throughout. I was awakened early for breakfast (6:30 am) and went back to sleep before the medicine study. One of the docs was out so at the last minute they changed my study from a 2 hour with abdominal binder to a 4 hour medicine only trial. During the study Dr. Biaggioni came in to check on me. We discussed a number of things about my case and the studies going on. He also told me that I had a very exaggerated sympathetic reaction to some of the tests earlier this week. He asked me if I had any questions. His bedside manner is delightful. Because of my symptoms I had a hard time sitting up for 4+ hours - even though they let me put my feet up for most of it. At the end I went right to bed. Spent the rest of the day napping and resting. The other POTS patient went home today. I will miss her company. 4 days down, 4 to go.

Omron $99 retail one- goes on sale several times a year. Over the arm, not the wrist. Sorry don't know model #. This has been outstanding for me. Has had quite a lot of use since I've been ill.

Thought some of you who have thought about coming to be a Research patient at Vanderbilt, or are already planning a future visit might like to know about my experience. I'll try to post again to give you an update later this week. MONDAY I was admitted Monday morning to the Clinical Research Center as an inpatient for an 8 day research stay where I was put on a special diet- caffeine free, moderate balanced diet of sodium and potassium. I also tapered off most of my meds. On Monday following admission I had a QSART, lab work and met with the Clinical Research coordinator, nurses and dietitian. I also had a lot of paperwork to complete including medical histories, several orthostatic vitals and late in the day I got to meet one of the other POTS patients on the floor. I felt tired but pretty good. TUESDAY Yesterday they awakened me early (5:30 am) to insert an IV. It only took two sticks (good for me) to get it going. At 8:00 am they had me do a posture study where they drew the blood before standing and then after being upright a half hour. I sat in the chair for the majority of my "upright" time. Then after a little break and rounds I met Dr. Biaggioni, my assigned doctor, who not only has researched POTS for many years but has also done studies on Mast Cell Activation- how rare is that? Later they had me do a battery of autonomic reflex tests and a Short Tilt Table test (supposed to be 10 mins- I didn't quite make it but I was close. After that time I crashed for the rest of the day and felt physically horrible. But I am so glad to be around people who know so much about what is happening to me and understand this reaction is normal in POTS. I also decided I liked having my own quiet private room with a nurse who regularly checks on me and brings me food. WEDNESDAY Today has been an easy day. I had a medicine and abdominal binder study where I basically sat in a chair for 2.5 hours and they periodically took BPs or Orthostatic BPs. Not sure if I received the real medicine or the placebo. I've had all afternoon to rest, I got some exercise and spent time this afternoon visiting with my new POTS friend who flies home tommorrow after her own battery of tests. I feel pretty good tonight. So far this has been an outstanding experience. The nurses and clinical researchers are wonderful, attentive and caring. It is so nice to be in a place where most of the people around me know more about POTS than me. 3 days down, 5 to go.

YES! Excessive yawning has been an issue for me from time to time. I'm not sure but I haven't had this symptom in the last few months but prior to I would go all day and I couldn't stop yawning. My family teases me about it.

Salt is important for me to retain fluids. When My BP drops it is the first thing I do- eat lots of salt. I aim for 6-7 grams. I start my day with a glass of Sole (salt rich water) and highly salt everything I eat. It really helps me bit is far from a cure all. Along w lots of fluid - about 3 ltrs a day.

Diamond, that is great news. So glad to hear. Christy, Did I mention to you that I also tend to do better when out of town? K&A, My doctor told me that the doses I was taken were well below toxic levels and encouraged me to adjust and use more if symptoms broke through. Like this thread.

I have seen Dr. Jaeger and am so thankful for my experience at Cleveland Clinic. The diagnostic information about my case has been invaluable and has lead me to better understand my condition and eventually led me to be diagnosed with Systemic Mast Cell Disease, the underlying condition which makes my NCS and POTS secondary. I did a couple of things that looking back really made the experience: 1- kept calling scheduling and his office to make sure on my one trip I would get all the tests needed 2- asked for consults w neurology and cardiac rehab 3- asked and got a follow up appt w him after the testing - we stayed an extra day beyond the 3 day planned visit 4- stayed at the Intercontinental Hotel attached to the hospital so I never had to go outside (important for a FL girl in Feb) I also saw Dr. Fouad and Dr. Polston. I imagine since Dr. Found has retired this has left quite a hole in the dept because she was essentially running all the diagnostics so he is probably overwhelmed - unless they've replaced her. Dr. Jaeger was excellent to speak with, I learned a lot from him as he described the various theories for Dysautonomia out there, and one in particular that they were inn the middle of studying. All that said, this is a great place for diagnostics and not treatment- although today I still use both treatments both he and Polston recommended: Mestinon and strenuous exercise. Dr. Jaeger is very intelligent and has his own interpretation of what is going on in autonomic dysfunction. He is not always on the same page as his counterparts in other med centers and has more of an abrupt bedside manner - but I'd go back to him and recommend him to others for diagnosing autonomic dysfunction. Note: of all the tests, the Hemodynamic lab was the most interesting where they looked at my circulation supine and sitting up under a fludroscope where I learned my BP and HR stay the same but my cardiac output decreased 50% when sitting up. Yikes. W severe blood pooling and Hyperkinnetic circulation. Have you been? Or are you going?

There must be awards for threads that make it into the 100s! How fun to see.

Before seeing a mast cell specialist I tried Zyrtec and Zantac- regular strength. I saw no improvement. After seeing him he suggested I try Claritin (10 mg2x a day) and Pepcid (40 mg 2x a day.) After this change- not only in drugs but also amounts (equating to double and quadruple dosing) I saw significant improvement on the days when I'm doing well - less brain fog, less fatigue, but when I'm crashing, I'm still crashing- so I know my dosing is not quite right. And I'm trying to add aspirin, a Prostaglandin blocking agent, but got really sick on. Baby aspirin-81mg (bc it causes mast cell activation- so Ive found a compounding pharmacy to make it in a 10mg form and am trying to get my body to tolerate it. Jury is still out on that.) Today I'm having a really bad day. Have been in bed all day, can barely stand, all the symptoms on full tilt. on days like today I take a third dose and add a dye free benedryl. It helps a little but only time in bed helps me recover from a crash. Hoping to find more improvements.

Oh btw- I am no longer a slave to the daily chore of Unclogging the shower drain. I pray that you will have improvement soon.

Oh, that is a good point! I have been on biotin for months now. Interestingly enough I had a complex nutritional panel done 3 months after taking a pretty high daily dose of biotin. It showed I was deficient in 8 essential nutrients including Biotin! So I have continued on Biotin since. I wonder if something about our condition also causes malabsorbtion of Biotin for some reason.

I echo the others on check w the doc. I seemed to tolerate the BBs for only a short period of time before struggling w side effects. I remember one night where I watched my HR drop to 40 and it really scared me bc my BPs were also running so low 60/40s range. After getting off the BBs I didn't have the low drops as severe. Now my low HR is in low 50s and BP 80/50s. Incidentally after getting of BBs my tachy increased only slightly but my fatigue really improved. It may be worthwhile to discuss a BB holiday w your doc. A lot of us have had to get off of BBs because of various reasons.

So how many of us have swelling in the right foot or leg? Are we all female? Is this a relevant trend? Hmmm

Rich, did this doc say there was no variation in cerebral perfusion between POTS and normal studies? According to the Director of Syncope and Autonomic Dysfunction Clinic at Cleveland Clinic a vital level of cerebral perfusion is maintained but it is thought to be a varying level of hypo perfusion. Earlier this year they were studying this very thing in POTS pts vs. Normal pts via special MRI and although I have not seen the results published it sounded as if they had a fairly compelling case for some degree of cerebral hypo perfusion. Again I haven't seen published evidence but nonetheless it sounds like Mayo and CC are communicating different messages.

Weird how a number of is have issues with our right leg... Hmmm

Bre, is he considered to be a mast cell stabilizer? If so, any chance you know which metabolites it blocks?

Sounds like a common Dysautonomia symptom. You might want to do a search on this forum for numbness- I bet there are lots of people describing this in the history of the forum. That would give you a good idea if it sounds like what you are feeling.

I have had this symptom multiple times since onset. I'm not sure but think it was after being on fludrocortisone and prednisone. So I'll use caution if another steroid is prescribed for me. Funny- I'm on both Mestinon and Clonazepam - no prob for me w either but I bet you are right. You could trial stopping each to see if it helps. It took me about 2-3 wks to notice improvement after it stopped. During the summer I had lost more than half my head of hair. Thank goodness I had a lot. At that time my hairdresser was in shock. I caught her eyes welling up and I knew it was bad. It has started to grow back now.