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About heissovereign

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  • Birthday 08/20/1987

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  1. 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.
  2. 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
  3. 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?
  4. 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
  5. 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
  6. 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.
  7. 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
  8. 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.
  9. 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
  10. 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.
  11. 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?
  12. 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.
  13. 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?
  14. 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.
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