Fall-Di

Forgive my tired typing! Hauger, I'm sorry for allbyou have been thru. We all have had too much suffering, it takes some strength to live like this. Di

Thank you haugerror, I appreciate the info! I am afraid to try it again tonight since I only slept 2hrs after having it last night and then woke and haven't been able to sleep at all. For some weird reason I get wired on this stuff instead of tired. This happens a lot to me. Sleep meds keep me up. I think I am going to talk to my Mast Cell Dr on Tuesday. I may be reacting to the filler. Maybe? Thank you so much, this site is so valuable! Di

Hi Sarah, Thank you for the info and your experience with Clonidine. I find I learn more from others experiences than from 'recommended treatment'. The Clonidine completely stopped my tremor and really improved my motor skills, haven't had any dizziness - of course only had one dose. I'm taking it for POTs and my recent blood pressure spikes. My general BP has increased to 128 ish/90. Dystolic has become a bit high. I want to stay on the Adderall while I get the Mast Cell treatment going, was even hoping to swap out clonidine with the Adderall. But if I sleep on neither, I feel better on Adderall. So the Clonidine was for sleep POTS problems and to lower the BP spikes. I just thought it was weird reaction, I can't lay down on clonidine because it feels like an anxiety attack. Thanks for the help, Di

Just took my first dose of clonidine last night, took half .1 pill. Fell asleep in about 30 minutes. Slept horrible for about 2hrs and woke with racing heart. Then I was wide awake the entire night. Might this mean it isn't the right med? I take Adderall, two 10mg during the day [no later than noon] and it has really helped, I can exercise on my recumbent bike/rower nearly 30 minutes most days. But sleep is a problem, I'm not getting enough and it does bring on a crash. I can't be upright without the Adderall so a bit of a vicious cycle. I have EDS and MCAD. Thinking I have hyperadrenergic POTS, now not sure. Any thoughts? Thank you!

I have been battling a sudden low heart rate and low blood oxygen this week myself. Freaked the slippers off me. Hr 38 and blood oxygen in the 80's. Lasted about a minute or two with chest pain. Just got over a nasty virus that had my heart rate spiking in the 120's, I have been responding to meds and my own fitness routine and making some actual progress. My heart rate has never gone too high, but I'm a fainter and have seizures if I'm upright too long and not listening to the warning signs. I wonder if it's a left ventricle dysfunction kind of thing, I plan to follow up with my Dr. Recently had some BP spikes of 179/98. All of this I think might be tied into the virus... Any chance you have a virus or an infection adding a little extra burden? Long shot I know, but this is new for me and it all happened during a virus. Just a thought.

Katybug, the sleep neuro didn't say one word about what my heart was actually doing. I didn't know what POTs even was at that point. It was three months later that I saw a cardiologist and my heart went nuts in his office when I stood up. He couldn't pronounce Dysautonomia, let alone fully know what it was. I moved on to Dr. Arden and got great care. She read thru all my results and found a good history. Don't you wish drs would work together instead of everyone having a piece of the puzzle and no one getting the full picture? Di

I did a sleep study a year back and had some very weird problem they hadn't seen before... Turned out to be a POTs problem. Specifically, it is adrenaline surges that caused my hr to race like a monkey on crack right before a circus performance. Found a solution via car accident. Ya, that was awesome for POTs symptoms. 1/2 a Soma slows my heart rate but doesn't cause low blood pressure or dialate my veins. .5 mg (Pure brand) melatonin 4 hr's before bed. Any higher and I get restless leg. 1/2 Benedryl at bedtime about hour after Soma. Allergies cause my Midnight Monkey spikes. (from Mast Cell Activation Crap) A supplement for Histamine blocking, DAO Histaminase thru out day with meals to flush out excess histamine in my body that feeds the evil Midnight Monkey. IPod full of awesome comforting audio books, free from library, mostly Vorkosigan saga this year. If I can't sleep I like a good book so I forget I can't sleep. Entertainment for the monkey. Hope you find some help! ?

Just in case anyone needs some Oregon drs. I found some goods ones! Primary Care - Dr. Lara Knudsen She's a rock star in the POTs field, has several patients with POTs, 1 with MCAS, EDS and Chiari Malformation. She works with Mayo Clinic for follow up post care and goes the extra mile to learn EVERYTHING she can about the above disorders. She is in South Salem Oregon. She has me on Adderall and I am a lot better - I have the hyper POTs version. Helped me get saline Iv's when I need them too. Dr. Arden - Cardio in La Grande OR She has POTs herself, her nurse practitioner that performs the tilt table test has POTs. She has a good understanding of Ehlers Danlos and MCAS. I feel she is as good if not better at treating POTs than Mayo. She did her residency at Mayo I believe, but don't quote me. Super rock star. Dr. Grunkmeier - Gastro - Portland Pretty familiar with autonomic issues, he's an IBD specialist who really knows his stuff. I got a diagnosis of autonomic immune problems, good treatment that finally works for me. Easy on the eyes too. ? Hope this shortens the time it takes to get good care on the West Coast. I have learned a lot in a year. The biggest lesson... If you aren't being heard MOVE ON and don't carry their failure with you. Peace out Potsies

Thank you all so much. Had a rough couple days and haven't been able to even sit upright very much. Mayo Clinic is still on the table (pun intended) at this point. I would love to do the test just one time, the right way. I am going to interview OHSU to see if they meet the criteria for the full test - been reading up on it. My insurance will cover most of the test, major pulse, but if it's not the full test I don't think I will waste my time. I am currently shopping for a new Cardio. Di

A bit of sugar is fine. I have Crohn's disease and get diarrhea very easily and that leads to loosing all my fluids... vicious cycle. Tank you for the link Stefanie.

Katy, I checked out the Nuun Active Hydration tablets and they had a sugar substitute in them. Do you know any that don't? Thanks, Di

Stefanie, I am in the same boat. I want off the Gatorade. Everything else seems to have some sort of fake sugar in it, I can barely handle sugar let alone the fake stuff. I am trying coconut water today. I will let you know how it goes. I am working on a recipe to make at home and I live near a compound pharmacy that I plan on checking with them to see what they might have. Di

Janet, Thank you so much. I was hyped up like a circus monkey before a performance this afternoon. I was really questioning if I was being over zealous in my attempt for better health and the ability to stand up. Then I took a shower. It's been four hours and I am just now recovering. I was finally able to unload half the dishwasher and that's when it hit me - I need to do everything I can to take of myself because this isn't right - and I stumbled back to my recliner. My first step is to fire my cardiologist! I am going to give OHSU ttt a try, it's done by a Mayo clinic trained neuro dr. If it isn't the full test I will head to Mayo Clinic. Again, thank you. Di

This was wonderful! Thank you so much!!!!!!!!!!!!!!

Thank you Katy, I have been on disability for a couple years already, but it get reviewed every year or so. I hadn't thought of that. I am trying to decide on treatment, I have systemic Sjogren's running out of control an attacking a lot of organs in my body. There are a couple treatments to choose from and I feel like I need the info. I also was worried that someone would dismiss the drs diagnosis if someone checked me on a 'good hour' and changed my chart. Thank you! Di

I am gluten sensitive and I get the little round scaly sores. You will need to do an elimination diet. It really makes a difference if you have a problem with gluten, it wears down your immune system. I get joint pain and itching when I eat gluten, recently I noticed my throat would get a little tight when I ate it. That was the last straw for me. No more gluten. Sores and itching went away. I think I might get a little grumpy when I eat gluten, hadn't really thought about it before. I will let you know the next time I am being bad and having pizza. Di

Katy & Sarah, I bought my handmade cat water fountain from Etsy... It's a fountain for my cat. I think I need an intervention. Di

Those were the exact words from my cardiologist to my neurologist. He told the Neuro if it would give me peace of mind he would refer me. My Neuro sent me to the cardiologist in November to get the tilt test done. My BP drops 30 pts when I stand and my pulse nearly stops. Tried Fludro and Midodrine. Midodrine worked for a short time - 2 weeks, then I was back to near fainting and dizzy all day. Cardio told me to get tested for Diabetes Insipidious and to drink a lot of fluids and that was all he could do for me. I couldn't get my cardiologist to refer me so I got on this site and got names of doctors in my area and then I started calling to get my referrals. My GP told me to have my Neuro refer me to OHSU for the test, which is what I wanted. I called his office and left a message, he immediately called the cardio and called me back and gave me the above info. So here is my question, is this Cardio an idiot or is he right. Does this test matter? He seems to think his semi-god-likeness declaration of confirmed OH is enough. Sorry, I am a bit angry. But don't I need to know more? Thanks for listening, Di

Sarah, Thank you for the welcome. I have really been using the site and have learned a ton already. Several people have helped me with locating a dr, I am so grateful this site exists! I too have an Amazon problem, my husband caught the condition from me. So now it's, "Is it mine or yours?" Are we the new cat lady? Amazon Lady... Sounds better than cat lady. (I have two kittens - there is no hope for me, save yourselves!). Have a 'good day', Di

I am on Dr Arden's waiting list. Is she good? Do you have POTS and/or other autonomic issues? I love Montana. I worked in Yellowstone one summer - During the big fires - I did not start them- and just fell in love with Montana. Oh, the sky! Such good news! Although I am sorry you have to deal with this stuff. Who did you see? Did they confirm Autonomic problems and could they tell you all that was not working right? You just made my night. Mayo Clinic doesn't have any appts open at the moment, and financially it was really a stretch. Wish you well too! Thank you! Di

My BP goes low when I lay down, but not always. I have pulled a 80/59, usually things are slightly spinning when I have those numbers. Even on Midodrine it was low, 100/60 laying down. My normal is 90/60. I had a out patient surgery back in the 1990's where my blood pressure dropped very low. I had just woke and they were getting me up and I fell to the floor, the doctors were yelling and I started convulsing. I have never been so cold in my life. Something was jabbed into me and I swear I heard the numbers 40/20 or something ridiculous. I don't remember much after that until the next day. It wasn't in my chart either. I had another surgery in 2005 and was so dizzy I had to hang onto the bed. I guess I should quit having surgeries... Di

Katybug, Again thank you! That is just the info I needed. I do not like sugary drinks, I'm a water drinker. I will check Amazon for the Nuun tablets. I had heard the same thing about Mayo and Hopkins. I have to go to Hopkins for Sjogren's, it's currently having some sort of party with my Kidneys, but I knew there was only one dr and not for adults for Dysautonomia. I was so hoping to avoid multiple clinics, I have been considering Cleveland. My Rheumy wants to work with John Hopkins and will leap tall buildings to get in to the right dr. I have a weird case and my Rheumy is a great dr., unfortunately he knows nothing about Dysautonomia but wants to learn. Thank you, off to Amazon shop... Di

Katybug, Thank you for the reply. I am on a waiting list to become a patient with the one and only Dysautonomia dr on the list in my area, she specializes in POTS and I strongly suspect I am dealing with Pure Autonomic Failure. I have Systemic Sjogren's and Crohn's and my immune system is on the attack, so I believe it to be an autoimmune attack on the ganglia. But, even though I have stayed at a Holiday Inn, I am not a doctor (hoping someone gets that joke). My Lab is raising two Manx kittens at the moment. He lost his ear biting buddy last year to kitty Crohn's. Hoping there might be an Oregonian in the group. Thank you! Di

Gjensen, Thank you for the welcome. My diagnosis went as follows: Neuro sent me to Cardiologist. Cardio didn't take it very serious until I said, "I think I am about to pass out." and went white. Cardio had me stand up and took my blood pressure for three minutes and became very serious. I don't remember it all very well, but hubby was there watching. Cardio said, "That ain't right." (no joke). My blood pressure dropped 30 points in under a minute. The Cardio said he could barely find a pulse and that my HR was low as well but I didn't get the number. I had a heart halter test done and my ticker is quite healthy, I have always worked out - although very modified now. My Neuro wanted a tilt table test done, Cardio didn't think it was necessary. I can't find a place in Oregon that does it, OHSU is a possibility but I have heard they don't have anyone trained yet. Thank you for listening, Di

I am looking for a doctor in Oregon. I am willing to go to Mayo Clinic, but was hoping to find one closer. We have one dr that treats POTS, but I don't have POTS. I have severe Orthostatic Hypotension, nearly fainted in cardio office. Cardio gave me lots of meds to try, none worked. I can't find anywhere to get a Tilt table Test. Any suggestions? Thank you so much, Fall-Di