heissovereign

I started Northera in November 2014, it has helped a bit. I started slow on 100mg tid and titrated to 300mg tid in six months.

I an glad you are doing better, I started my gluten free diet tonight. I was serious on it before and i felt great but due to all the stress i have endured i gave up eating healthy. Well i am trying again

I know, I have always wanted to live there.

Hello all, i am back... I was wondering who all are in the Panama city beach fl area? We are trying to move to the area. It may be a couple of years before we sell or house but want to get to know people to make the transition easier. So who is in the pcb fl area? Also is it hard to get in to see dr Thompson in Pensacola?

Hello, so I left the hospital on march second after finding that many of you were right and my doc gave me too much Florinef which put me in hypertensive crisis. So I went home after five days with 17 pills aday which consisted of 0.1mg of Florinef 3 times a day, 10 mg of midodrine 3 times daily, 300 mg of gabapentin 3 times daily, 1 g of sodium chloride 3 times daily, mag oxide 400mg 2 times daily, potassium chloride 40 meq daily, sertraline 30 mg daily. Went home And saw recovery after a little while I had one great week, out flying kite with my two year old. And then Saturday my bp spiked really high and I started convulsing I quit breathing and Chest compressions were done I started breathing and was rushed in I was in Icu for 4 days with about 24 convulsions daily I was told. I was released yesterday with home care with a diagnosis of conversion disorder along with my dysautonomia. Well I noticed a correlation with my midodrine and convulsions so I called my docs office to ask if I can lower doses so they let me drop a dose, and my rash I had on abdomen went away and my convulsions stopped until my midodrine dose this morning. I had three and called my doc and told them my concerns of allergic reaction to the med and doc pulled me off of it and no convulsions anymore and rash is disappearing, so no conversion disorder. Just severe allergy. Oh and they implanted a loop recorder to try to help diagnose more of my symptoms. It has been a scary two months and without midodrine my hr is sky high and can't breathe well but I have a nurse with me when my husband isnt. I have to be separated from my kids during the day but they are taking care of, i am distressed by this but its best for them. my home nurse is helping with disability and my neuro and cardio and ep are working on getting stuff set up with vandy. my brother has given me his extra iPhone on his plan so I can keep in contact with him so I have web Access so will try to update often. tomorrow will be first day without any midodrine so please pray things go better with hr and blood pooling. I thank you all

Jangle- so sorry I tried to make it not sound like that. I may be able to get on sometimes at my moms. No more driving for me . but I will try to update. I did get my second opinion. And they are considering the pacer, my hr is staying in the thirties today. I am so ready to go home. Sheena

I am still here at the hospital, I'm back and forth in my stability. But I was told to be safe I have to move where I have help, so we are moving to a house my parents are renting to us I have family next door and its in the city of my church family. With that we have to turn off internet and other luxuries because we will still have our other house until we sell it. I am grateful for your help in this mess, I am excited though as I will finally be around friends who love me and my family.

Mrs julie, its been low during rest and some while up since childhood. Rachel- thank you for being obedient to the Lord and praying for me, we have seen his providence in all of this. I just wish I could live more independently, when I get home someone has to stay with me during the day because I have to be sure my kids are safe if I faint and remain unstable and they can get me help. It seems so unreal my friends and famil want me to get the life alert with fall indicator. Its hard to think about at my age. But the nurses and doctors are worried about time with the progression, and they were told vandy is packed right now, even my neuro is going to overbook herself to see me for the neuropathy tests, and I'm going to be a new patient I have only seen her in the hospital. But I can't worry just gotta be patient

Thank you, you have really blessed me with your care. My bp is better its down to 133/70 midodrine side effects are doable but I hate it, my scalp felt like it was crawling and the chills and headaches but I'm gonna hold out. I just can't believe I will be taking. 13 pills a day. I hate pills. Oh and my nurse said with my hr staying so low to ask for second opinion from my ep to get a pace maker She and I feel it will at least help my low rate, that is what makes me so tired, so please pray my ep will be open to this.

Thank you ladies I had a talk with cardio this morning, my potassium was 2.9 this morning and my bp is 150/105, I am on high dose liquid potassium. He listened to me and lowered my florinef to 0.3 mg (0.1 three times a day) and added midodrine at 10mg 3 times a day. And staying on gabapentin three times a day. I have to stay a little longer to be monitored and then will go to neuro, cardio is very concerned of the progression and is trying to push neurology to get me to vandy, since they have all the connections They are worried about waiting on this because its so severe, and he doesn't know what all we are dealing with. But it is progressing fast. I am not worried though. My family and church family are taking care of us and I have people to stay with me when I get home so the kids will be safe if I faint again because my blood pressure doesn't stabilize and I continue convulsions until i hav 2-3 hrs of oxygen and saline. Thanks ladies for your concern. I am encouraged though. Will keep u updated

Thank you mrs julie and I hate bananas. My potassium was ok until I got a stomach bug. He told me about the potassium depletion and is going to put me on a high dose supplement and depending on my salts he may put me on 1gram salt tablet three times a day but thinks I may not need the salt tabs. He is going to have me scheduled for follow up visits for lab to check my electrolytes. And my bp hasn't spiked since Sunday nite and I think most of it was from the dehydration from the vomiting. I thank you for your concern but for once my doc is listening, explaining and doing all he can. And I'm feeling good today just sleepy.

Thank you, my sodium and potassium are off so they said I'm here at least until tomorrow he moved me up to 0.6mg of florinef he said with my instability with blood pressure and hr he isn't sure on trying midodrine or anything and leaving that up to vandy. I did have a doc I used to see recommend a pacer for the bradycardia it was mid thirtys last nite. Jangle, and rama you seem to know some about vandy do they recommend pacer for bradycardia like mine? And those of u that have one do they help. And anyone in my age range have one?

Thank you for your encouragement, it is scary but one of my nurses comes in and researches with me , they are all nice and trying to help, they don't understand but is awesome that she comes in when she has a break with her ipad to research with me. Lol I hate being the sick person on display, but at least they are taking me serious now... I have been dealing with this my whole life and finally have help even my family is supporting me now. I hate it though my babies are in two different places and I haven't seen them since last nite.

Ok so, after my episode last night I am still in icu stepdown for monitoring. My neuro and cardio and EP said this is a very severe case, my neuropathy has progressed over night to where now I get vibrations and complete numbness from my forehead down to my chest and arms and fingers they are keeping me on neurontin (sp), which temporarily helps. They are monitoring me due to the fast progression. When I get out my neuro is doing nerve conduction test and skin biopsy. Then getting me to vandy. I'm relieved but scared because its progressing so fast, my vessels in my face are busted as well with no explanation. Its scary my voice gets slurred because of the numbness in my throat, they reviewed all my files and believe I was born with this. Any one know from a genetic perspective about this illness?

Feeling somewhat better, had a bug yesterday couldn't keep anything down. Blood pressure spiked so went to er. Fainted with violent convulsions, finally got me stable after fluids. Calcium too high? And potassium low (3). neuropathy really bad they have me in icu step down awaiting to see neurologist and EP. Why in the world would calcium be elevated. Its always low. I wish this would have happened past Wednesday at least I would have insurance. Ugh this is beyond frustrating but at least my cardio is on duty here. Thanks for listeninG mrs julie thank you for warning about bp I would have had my episode at home with no help, had I not checked it and gone to er. Oh and don't worry I didn't drive. I'm just ready to go home.

40-48 mostly

In the same boat, thanks for posting... will love to see what all of this means.

Thank you and i just got awesome news, i called the insurance and i get my letter in the mail this next week and preexisting condition coverage starts march 1st!!!!!!!!!!!! i havent had insurance in 5 years, finally get some help and save alot more money!!! peregrine- thanks for expounding for Kala, lol it helped me understand more too... its so strange though i have never had a reaction from blood or needles.. mine is more like potsies, there is no apparent trigger. but one thing i cant stand is when i'm having fun or happy i get a migraine... lol and ppl wonder why i get down so easily, it hurts to be happy... does that even make sense. Mrs Julie- I know, my church family had been praying that i had the worst time ever yesterday so they could find it, and that was a miracle that she was in there because she is a anesthesia nurse, she wasn't even supposed to be in there but saw my name on the chart so checked in on me and was just chatting with the EP about how she had seen me last month at church, that was an answered prayer because this was someone he knew from working with her and respected her so he trusted her. I have put a call into my nurse to see about the potassium, and they have my doses at 8am and 2pm. I will watch out for insomnia, and will watch my BP. Thank you so much you have been so helpful!!!

thanks ladies, ya'll are always so encouraging and helpful... Mrs Julie I was on 0.2 mg a day. and thank you this is very insightful and will be sure to take in alot of potassium. They said yesterday that my potassium was a little low and my magnesium was a little low. i am going to get back on my OTC potassium to start with it is only 99mg but its what used to help me. and from what i understood from the EP he said that my slow heart rate is also part of NCS but my high heart rate is IST, I have been having alot of tachycardia just laying or sitting as well. he said it was everywhere from 40-80 fluctuating back and forth along with my bp going up and down the same, it would be high one minute then low the next. same with standing only mostly tachy but within seconds it would plummett and then go back up just as high which now i understand my symptoms because as it was doing it i started having shortness of breath and he would tell me exactly what was going on with my hr and bp then it would stabilize then plummett again. he said that is very common with IST combined with NCS either way he said my ANS is completely messed up and said from my history i need to see neurology and the other doctors asap. this was actually my second opinion. my cardiologist mentioned this last week and then the EP which has no connections said the same and after the test he looked through my records and said that i was diagnosed with NCS and IST years ago but don't know why the docs i had and have didnt tell me.. now lol isn't that nice. they could have treated me back then. anyways im still going to be very careful and have an open mind but i am just glad they are helping me now and the EP wants me to go to Vandy when i can so at least i have support now. and whats awesome is that when i came to after the test a nurse who i go to church with, the one who helped me the night i collapsed at church she was right beside me talking to the EP about what happened that night and that i was sitting when i collapsed, thats what made him a little more serious about everything so I had a witness!!! he was so helpful and told me now that they know what it is he said they havent studied it much but will give me all the help they can. Thank God for witnesses, of my fainting and hr and bp that night. he was very interested in my case, he said he has treated dysautonomics before but nothing like this, he has only done mild cases, he said what he saw was unbelievable and wouldn't believe it unless he saw it himself. but he also had never had someone display a seizure like symptom with fainting either but he researched it right afterwards and consulted with others and realized it was just from the bp dropping, so at least he was honest and is trying he wants me to go to vandy but without insurance he cant send me yet. i am feeling ok today, i have already started taking the 0.2 mg twice a day, how much fluids and salt tabs do you think my help? i forgot to ask them that. Thank you for your help mrs Julie.... Kala- it is inappropriate sinus tachycardia and neurocardiogenic syncope. and don't feel stupid... Naomi- I thought the same he said that the heart rate and bp issues weren't causing the neuropathy but that another part of my dysautonomia is.. I am awaiting to get tested when i get insurance but the more i read on small fiber i really think thats it, well except the temporary paralysis... that just scares me... I think your right though, now just to wait for the insurance. i will know soon enough i guess, i just feel so vindicated since they are taking me seriously now.

I am glad I did it but it was horrible in my case, I have IST and NCS, with convulsions he said my bp was unreadable on the auto cuff but when he took it manually it was 60/30 he said it was all over the place along with my heartrate. He said my autonomic system is very out of whack, he moved me up to 0.4 mg a day of florinef. And plans for other meds if this doesn't work. He also said after I get insurance I have to get treatment for my digestion issues, and neuropathy. I don't want to go into it but that was the worst thing ever, the EP was shocked at how my hr and bp did. He was so interested in all that happened, I had horrible convulsions right before passing out. I pray I never have to do that again but am glad I went through with it. And I asked him why its not pots since it spiked above 30bpm, he said that they overlap but I have primary ist with pots, he said it wasn't the high rate but the dramatic fluctuations in all positions, that is worst in my case. It went up to 180, and fluxed between brady and tachy in all positions, no wonder I feel like crap at all times. I am so glad I finally know, he said that this isn't causing my neuropathy though, he thinks I need to go to vandy. He says it needs more testing but that this with my history is not a mild case of dysautonomia like the doc first thought. So definitely have support now, this is so encouraging.

I know I was a teen trying to look grown, I wanted to prove I could be responsible. Which I was, I was a team leader moving up to supervisor about age 17. But had I known then that I was making things worst for myself I wouldn't have done it. And cvi is chronic venous insufficiency.

I was diagnosed last year at 23 but have had autonomic issues since very early age.

I did, he told me that my neuro would be better to send me to vanderbilt since he knows the contacts there so I am just waiting to be approved for insurance so I can go to him for the referral. And since I was so symptomatic and he saw what my hr and blood pressure were, he scheduled a ttt for Thursday. And depending on results will figure out what to do next.

So.. the one question I forgot was about the mets score. Sorry, I was very symptomatic at the appt. I almost fainted at the office, I forgot all about that question. Its always worst around this time

I have them as well and have had them for many years. Pregnancy made them worst and now they are so so itchy.. I have them from the waist down .. mine I believe came from my working, I used to drive a stand up forklift (cherry picker) 12-16 hrs a day. Constantly on my feet, well except when I fainted. I had test done to look for dvt but I just have cvi.