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About blizzard2014

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  1. blizzard2014

    caregiver kicking me out

    There should be a system in this country that actually protects and helps people who are sick. But sadly the system is so messed up. I hope your son will change his mind and start being nicer to you. The worse case scenario is he can try and have you evicted and there are ways to fight that for at least a few months. I don't know how you will fight it alone being that someone will have to show up to court to contest the eviction. As long as you have mail coming to that address your son cannot have you kicked out unless you're being violent (he can have the cops remove you for the night) or he has to legally serve you with an eviction notice. You have to make sure you have mail coming to that address though. I can't even imagine having to go through all of these medical problems and then have no where to turn. I will keep you in my thoughts and prayers. Hopefully your son is just going through a rough patch and having a hard time accepting your current health state. Is there any way you can contact a social worker to come in and help you get some services? That is about all of the advice I can give you. Hang in there.
  2. blizzard2014

    Sleep Apnea diagnosis

    I have a ramp up feature that starts low and goes to full pressure in 45 minutes. The only problem is that even if I am exhausted to the point of drunkenness, as soon as the pressure setting goes high, it wires me up like I'm on crack. I can't sleep unless they give me meds and the sleeping meds only keep me asleep with the mask on for maybe 3 hours at best and then I wake up and take the thing off. I know I need to start using this, but as some have stated I had very bad follow up from doc's and also from the medical device company so I became extremely frustrated and dropped the sleep doctor. The doc said lowering the pressure would not work and he is right. I saw my titration study. All events continued until the pressure hit 21. Maybe the pressure was 24, I don't remember if it goes that high. They had to switch me to a BIPAP machine and higher pressure half way into the titration study. My throat has a lot of resistance.
  3. blizzard2014

    Just did a brain MRI tonight

    I had a brain MRI and everything was normal. I had mines because they're looking for a structural reason why my Bells Palsy keeps on coming back on the right side. It has damaged my face some and the next time it's going to leave me all messed up. I try not to think about that. I can deal with a lot of stuff, but having a half working face is going to send me straight over the edge. Then the Neurologist who was supposed to review the report quit the practice. I will eventually see another one because I want that surgery where they open up the small bone by the ear so when the nerve swells, blood supply will no longer be choked off. Do you guys thing Chronic Epstein Barr can case this. I have read that Herpes virus can also cause this.
  4. blizzard2014

    Sleep Apnea diagnosis

    I also have moderate sleep apnea. I have 21 events per night and my oxygen levels are always under 88 when I sleep. I tried the machine and just put it under the bed. It's been there for 2 years now. Can you tell me how your friends heart size became smaller. I also have an enlarged heart and should be using the machine, but with 9 medications, insulin injections, and all kinds of other issues it would be for me like living inside a hospital 24/7. I have dreams where I'm choking and then just snap myself awake. I also have dreams where I'm not breathing and I can hear someone call my name and then it wakes me up. I think those are long apneas where I am choking in my sleep. I have some central apneas too. My blockages are severe a in I have to be on the highest pressure setting they have (and you can only get the hither pressure setting on a BIPAP machine) and it was set up to force me to breathe whenever my brain would not send a signal for me to breathe. I hate the d*** thing. But once the ticker starts to suffer from lack of oxygen for many years, then it becomes a serious problem. I would try and use the machine as it might make you feel better and help with your overall health. I can handle the lower pressures like 25-16, but when that thing hits 21, it's too much. It's like having a vacuum cleaner on my face.
  5. blizzard2014

    I'm new to the forum. I am scared

    He has an employer provided short term and long term disability plan from what I can gather. On those types of plans, a lot of them are occupation only plans. It means that if a doctor feels that you cannot return to your current occupation, you are awarded disability. It's not like trying to qualify for SSDI, which states that you have to be found unable to do any kind of work. If SSDI feels that you can no longer stand on your feet, but can sit down in an office and answer phones, you're not disabled. Even if you did not train for an office job, or have a degree. They will suggest you retrain and switch careers to accommodate your illness. It's much more complex and harder to qualify for SSDI than it is for long term disability insurance.
  6. blizzard2014

    I'm new to the forum. I am scared

    Everything changes with this disease. I was having HR go from 85 to 130 BPM all day a few days ago. Now it is going from 70 BPM to 100, to 110, depending on how long I stand up. BP standing without meds has been like 130/106. It goes higher without meds. I feel faint a lot, like I might pass out, but I never do. I have passed out a few times as a teenager, not blacked out, but knees buckled and hit the bed after trying to stand up on a very hot day. I don't know exactly what I have yet as I have not been tested, but I'm glad I have not been passed out on the floor yet. I hope you get to the bottom of what's going on. Also, I pray that you feel better soon. I know what it's like to be limited in activity, but only from my bum leg. My leg only has about 4 good hours of standing/walking a day and then it starts to drag like a sack full of dirt. I have bad circulation in my leg. I sit all day with my leg elevated on the recliner to prevent pain flares. It hurts like heck after sitting with it down on the floor for too long. But it also starts hurting from being elevated too long. Hang in there. You're surrounded by a good group of friends in here. They have helped me out a lot. I don't freak out thinking heart attack every time I have high HR. I had some really bad palpitations yesterday upon standing and the other night for a few minutes, like my heart was flapping around inside my chest like a fish out of water. But I know mostly it's just more of an annoyance than it is a serious medical issue.
  7. blizzard2014

    If only I was on the TTT today lol

    I'm going to try again, and if not then I will pay cash for a good doc to see me. There was only one good doc I saw in 2014 who advised me to keep my INR above a 3.0. An oncologist. But I don't think he knows anything about autonomic dysfunction so I won't be going back to him. He ordered a second blood clotting panel and my APS antibodies were still in the high positive level, even three years after my blood clots and first APS antibody test. The first one was 98 positive and the test he ran was 89 positive. Still high and still doing damage to my body.
  8. blizzard2014

    If only I was on the TTT today lol

    Pistol, my doc still thinks all I have is excitable "or liable" blood pressure. He gave me all of the BP meds and told me not to go overboard with them and kill myself. He's not so convinced I actually need all of the meds he is prescribing. He struggles to grasp my condition but pacifies me by giving me the meds. I'm currently looking for the best cardiologist in my area and gonna pay cash to see him and get some real answers. Blood clots can also cause dramatic increases in HR and it could also be that I'm still throwing clots while on blood thinners. It could also be that I have chronic blood clots in the lungs that keep getting missed on scans also contributing to all of this. For a while I just shut down because I was seeing doc after doc and getting the same answers. I stopped trying. But I will seek a good heart doc and then see the university of Irvine for some autonomic testing. I will begin calling this coming Monday and see if I can get some answers. You're right about keeping one dose of meds the same. I just panicked when my BP was 88/65, because I read hypo profusion to the kidney's can cause damage. Today I'm still hitting 111/100 standing even on the Lisinopril. If it continues, I will up the dose again. But what's scaring me is the consistently high sitting HR and I had a 30 second bout with heart palpitations yesterday night that scared me to death. My last EKG a few weeks ago said to consider left atrial enlargement, and numerous before them were positive for meeting the voltage diagnostic criteria for left ventricular enlargement. Left atrial enlargement is an early consequence of hypertensive heart disease. I also have the confirmed moderately enlarged right heart. One doc suspects it's due to pulmonary hypertension and that the day my pulmonary artery pressures were measured, I was having a good day and they do not accurately reflect my real numbers. Sometimes you can show normal numbers at rest, but they jump really high when you are walking around. So, a good heart doc is needed before the autonomic doc as this can all be heart related and not necessarily POTS. I just hate having to max out more of my credit cards looking for answers. I have almost 3 k in debt and out of that 3k, I only spent 300 on myself for clothes. The rest went for medical devices, medications, and medical related items.
  9. blizzard2014

    If only I was on the TTT today lol

    Is that normal for an attack to just come on out of the blue and now be completely gone? The high HR is gone now and there is very little change between the sitting HR and the standing one, although both are now close to 100. That was a very weird occurrence.
  10. blizzard2014

    If only I was on the TTT today lol

    I do. But am on Medicaid and it is hard to find a good doc. I have been looking and looking. I would even pay a few hundred dollars to see a decent doc. But this episode just hit and now is calming down and my BP is normal. So, who knows. I can never predict when this will happen again. I know for sure though that if I tried to exercise, I could probably force one of these episodes on.
  11. blizzard2014

    If only I was on the TTT today lol

    HR is behaving better now. It's only shooting up to 109 when standing. I guess it must have just been a hit and run POTS attack. Now it's like a baby POTS attack after shock.
  12. Today POTS was in full attack mode. I went to the store and stood up for 1 hour cooking some pasta sauce. My HR was bouncing back and forth between 130 and 133 the entire time. I could feel the blood pounding in my neck the entire time. I was getting dizzy but fighting it. I lasted for the hour and then had to sit my behind back down. My sitting HR is currently 90 (still high) but it is jumping 40 points on standing and staying high the entire time. If I didn't believe I hat POTS, I would be thinking this is a heart attack. I kept showing the pulse ox to a family member and asked them if I was running a marathon or lifting weights. They said; no, you aren't. Then I asked them why is my HR so high and they said it's because I'm out of shape. So, I asked said family member to stand up and I put the pulse ox on them and it read 70. I asked them why their HR is not high when all this person does is work in an office and spend the remainder of the time sitting on the couch lol. No explanation. That ended the hypochondriac discussion. They had to admit that they didn't know what was going on and that they could offer no viable explanation. I feel so beat up from the shopping and the cooking now like I did run a marathon. Maybe it is because my body thinks it did actually run a marathon with exercise level HR for over an hour. This does not give me confidence for when I go back to work soon after the surgeon releases me back to full time. I thought things might get better and now I'm getting dizzy and faint just sitting here typing. I'm sorry for all of the constant posting and for beating this dead horse every couple of days. I'm just frustrated and no one around me understands what this actually feels like. I might email my doc again and ask him if it is normal for HR to be 133 for over an hour standing. He will give me some remark like "you were cooking; stirring a sauce takes an enormous amount of cardiovascular effort. Your HR was completely normal. It wouldn't be so bad if I didn't feel it happening. I feel the blood pumping in my neck/ears and then the dizziness; and every time I check my HR, it is whacking out. I usually don't get really dizzy and forced to sit down until my HR is in the 140's. That's when I feel short of breath and have to absolutely stop whatever I'm doing and sit down for a while. I know some of you all said that you are on the floor with a HR of 120. My body fights some of this stuff, but how much of a beating can the body take before it really gives out. Until that happens, I will be fighting this monster as hard as I can.
  13. blizzard2014

    Had my yearly today...arrrggh, ummm, errr

    Pistol I just tried that and it lasted 5 days. I stopped checking my BP all the time and went off all of my BP meds thinking this is all in my head. Then one morning the headaches came back, checked my BP and it was back to stroke level. I guess you can ignore anything, but it doesn't mean it's not causing symptoms or doing damage to you. I feel like crud with my meds, but I feel even cruddier without the meds. I will tell any dismissive doc I already went off meds and show them the pic's of what happened to my BP. Have you ever thought about learning how to give yourself fluids? You can buy them at Costco. They are ringers with lactate. I was buying them for my cat who had chronic kidney disease because they are so cheap compared to buying them from a vet. I'm not suggesting for you to play around with this medical stuff, just something to look into.
  14. blizzard2014

    I wonder if BP machine is wrong.

    No, I drink extremely strong coffee and even then sometimes can fall right to sleep some days. But usually my BP is the same with and without caffeine. The only thing that really spikes my BP is when I tried Premetine. It's a med that stimulates you. I read some bodybuilders use it for energy and it didn't do anything for me other than spike my sitting blood pressure to stroke level. I was 190/120 sitting and afraid to even stand up for what the spike would be. I took Clonidine and doubled up on my other BP meds at that time and went to bed for four hours and my BP went back to normal. I still have the Premetine here just in case I ever need to raise my BP levels. I also know that Nyquil raises my BP because I had a really high BP attack on it, but back before I even knew I had high BP. I woke up and saw my vision pulsating with headache and rapid heart rate and then threw up.
  15. blizzard2014

    I wonder if BP machine is wrong.

    I tried to get that from my sleep doctor for my speed apnea and he wouldn't give it to me. It is kind of like trying to get speed or something. We have all these good meds and then they refuse to prescribe them. I read about that med working to make you more focused and alert but it is not the same as taking Adderall.