blizzard2014

11 hours ago, StayAtHomeMom said:

I only had to cut out milk. I can have cheese and butter and heavy whipping cream. They all have high fat with low carb. The diet has been an adjustment but my body feels better and I am down almost 30 lbs in 4 months. With no exercise. Honestly though I feel like it is more weight because of the inches. I should have measured when I started. I was about 50 lbs overweight. And I am halfway to my goal. When I hit my goal I doubt I will go back to bread and pasta. But I will go back to hidden carbs (like sugar) and see if it messes with my GI. I am hoping not because I miss my mountain dew.

Why not drink diet soda. I use Splenda in all of my drinks and I can even make a chocolate cake with almond flour, Splenda, and cocoa and it is only 7 grams of carbs for a pretty big piece of cake. You can also make bread with almond flour and eggs and it is like 7 grams of carbs per slice. I like the low carb diet more than keto, because you can still have 40-60 grams of carbs a day on maintenance and stay skinny. You don't need to restrict carbs to under 20 a day. That's just way too restrictive for me. 

1 minute ago, StayAtHomeMom said:

I am glad you are looking at your situation differently. The way you perceive things can be a huge difference. I used to say I can't a lot and it gave me a dark cloud a lot. Now it is more I shouldn't. But maybe I can try today. It backfires a lot and I get exhausted. But I still try. I am too hard-headed not to. But usually I do it when I have the "spoons" to waste. 

A lot of us have wondered how our condition isn't causing damage. Maybe it is. Maybe it isn't. The body can do amazing things. Maybe it is healing itself. 

I feel the opposite with my bowel movements. Since I started the keto diet (to lose excess weight) I have started having halfway normal bowel movements once a day. Sometimes every other day. Still probably softer than normal but I feel it is way better then mostly liquid 4 times a day. I was getting tired of spending so much time in the bathroom

I spend between 30 minutes to 1 and a half hour a day in the bathroom every day. Been that way for years so it is a daily routine for me lol. Even locked up I was in the bathroom a lot as it came out one small piece at a time. I have never had normal bowels. The Keto diet is good supposed to really help a lot of medical conditions. But they say we also need to cut out dairy too. I will be trying a diet next. I'm glad you're feeling better. 

I've been kind of absent for a while due to being depressed, but the dysautonomia mystery continues. 1 small piece of Lisinopril added to a half of a 20 MG pill is the difference between 130/103 BP when standing and 118/80 when sitting, and 120/85 standing and 96/100 over 71 when sitting. It's literally driving me mad today. The other day I had 6 straight readings of 140/102, 133/101, 133/101, etc. Then after driving for 30 minutes to work, BP reading before getting out of the car was 118/80, two times. Then after 2 hours of light cleaning of a building, standing BP before sitting back down was 130/101. Pulse was 110 after working. But now my pulse will stay level from the sitting to the standing position and the BP will still be acting all crazy. But what really has be depressed is that I feel the same dizziness, lightheadedness, brain fog, and absolutely unwell whether my BP is normal, low in the 90's, or even high in the 145/106 which was the highest reading when on meds. It makes no difference in how I feel or the tingling in arms, headaches, and it feels like that dizziness you get after holding your breath for too long. I have never passed out, but it feels like I am in a ready to pass out like state. 

I decided not to adjust my meds today since I will be sitting in a chair all day any how. No need to stop the spikes. Now, I know they say you cannot die from this condition, but it surly has to be doing some sort of damage much like drag racing in a car. Going from zero to 120 in seconds, then back down again. A doctor told me that I can get a popped vein in the brain from too high a reading and then bleed to death from the blood thinners. Maybe his is mistaken. Just wanted to see how the rest of you are doing? I also have been having 5 days feeling like there is a hole burning inside my stomach and very intense anxiety. But I am no longer ever backed up. I guess it is true that once they take out your gallbladder, you will never be locked up again. I go 4 times a day. Maybe a sluggish gallbladder was causing the gastro symptoms. I still burp up 14 hour old food taste though, so maybe I still have a slow gut. But my bowels are over-activated since GB surgery and I welcome this. I rather have loose bowels than be locked up and nauseas all of the time. Any how, I'm still plugging along living in my world of weird symptoms. I hope the rest of you are doing well. 

I had a doctor tell me my Post Thrombotic Syndrome and right sided leg pain is because I'm overweight. I have already lost 40 pounds in 2 years and the pain is still there. Some doctor's just don't like to listen or hear patients complain about their symptoms so they shut us up with whatever they can. Being fat gives them an easy target to blame for our symptoms without actually having to do the work of looking for the real problem. If echo shows heart issues, I would tend to believe the objective medical testing over a subjective doctor's opinion. I also failed an echo with moderately enlarged right side heart and the doc tried to tell me this is normal for everyone who had a blood clot in their lungs. It isn't. I was very upset he didn't take it very seriously or answer my questions. I still have good heart pumping though, so he said to monitor the enlargement. If you have edema and a bad heart, it could be a sign of something that needs to be closely monitored. I notice that I have more edema in my stomach area than I have anywhere else on my body. I have remained the same weight for a few months, yet my pants are fitting way tighter than they used to. I have to use an extender on my button to be able to wear them. All this and I am the same weight, just have swelling or something in my abdominal area. I also eat 1 meal a day. That's it. No sugar drinks, no soft drinks, just coffee with Splenda. One meal a day most days well under 2000 calories and I am still 233 pounds. My weight is too stubborn to budge. I only lose weight whenever I become physically i'll or go through a bad psychological melt down. I had one 2 years ago when I lost 40 pounds in 3 months due to not eating because I was having a mental breakdown. I have been able to keep the weight off because I do not eat like I did when I was nearing 300 pounds. In my case, I actually used to eat like the people on my 600 pound life before I got too sick to eat. I made myself this big, but I only eat 1/3 of what I used to eat and I am still fat. Any how, I hope you're feeling better. I would have simply walked out of that appointment room. I don't put up with rude doctors anymore. I dropped the heart doc because he was so rude to me. All I wanted to know was how long can my heart remain moderately enlarged before I lose heart pumping function and go into congestive heart failure. A moderately enlarged right ventricle means that the right ventricle is so enlarged it is the same size and thickness as the left ventricle. This is one step from severely enlarged. It makes me feel like there is a ticking time bomb inside my chest. 

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. 

9 hours ago, StayAtHomeMom said:

Do you use the adaptive pressure or straight pressure? Originally they had my hubby on the adaptive. The doctors thought maybe straight pressure would help the feeling of choking. But he never tried. A friend of mine uses the straight pressure and he said it is much better. 

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. 

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. 

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. 

4 hours ago, Derek1987 said:

Thanks you so much for your reply and story. It feels better to know I'm not alone. So now you are on SSDI ? Can you tell me how you were approved? My wife is disabled. It took 3 years and lawyer and hearing to get hers approved. She's had hip replacements, ankalosking spondylitis, fibromyalgia, osteroperosis, osteoarthritis. She's also in her 30s. She was approved 3 weeks ago. My body lasted just long enough for her to get disability . Now I feel like I might be next. If I were to go back to work again, I'd end up on the ground again. I'm wondering if I should go ahead and apply for it. What were you officially diagnosed with that the social security office approved you? Did you get denied? Hire a lawyer? I mean maybe I will get better. But I might not and SSDI is such a long process. Once again, I really appreciate your response and advice and experiences. 

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. 

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. 

8 hours ago, StayAtHomeMom said:

I am on Medicaid and I had to wait 6 months for my specialist but I found good doctors that were willing to learn and was diagnosised before I seen the specialist. 

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. 

10 hours ago, Pistol said:

Dear @blizzard2014 - you really need to be better controlled with your meds. You have mentioned before that you titrate your meds rather take one consistent dose. In POTS this is not always a good idea since we are seeking stability. I take my meds faithfully every day, no matter what, and only if I am in a flare or my BP runs high despite my meds and usual routine do we increase my beta blocker for a day or so. My BP runs low and high, so it would not be smart to keep changing the dosage. Your BP abd HR have been so fluctuating that it mostlikely would help to stay on one daily dose of lisinopril and clonidine ( these are your meds, right? ) and only increase one of them if you are having unusually high BP that does not come down with rest. What doea your doc say about your meds - does he want you to "play with them" or does he recommend a regular dosing schedule? -- I so hope you will feel better soon!

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. 

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. 

3 minutes ago, StayAtHomeMom said:

It sounds like you may need to find a new doctor. 

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. 

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. 

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. 

12 hours ago, Pistol said:

I wish more of us would report these quacks @WinterSown. I have at least 2 docs that have been not only rude and dismissive but have actually done damage to me by ways of neglect. I just complain to my patient and awesome PCP who shares my frustrations and has already seen me in tears in his office several times over these docs' approach to POTS. The last one was a hospitalist that REFUSED to admit me for IV fluids despite my PCP asking him to admit me, which resulted in an unnecessary ER visit that then lead to the admission anyway. The other one was an electro-physiologist that did my second TTT ( which proved positive for POTS ) but told me that I am hysterical, that I should go off of all of my meds because I do not need them and that if I would stop taking my BP so often I would feel a lot better. Can you imagine? Of course I fired these - and 3 more - docs. Now I am in good hands with my team of 3 docs who work together and got me back on my feet. ( Mine are not powdered, though ). I did report these docs to the facilites they worked for, so I guess there were some repercussions for them. ---- Glad you are doing a bit better again. 

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. 

21 hours ago, StayAtHomeMom said:

Can you try different types of caffeine for your fatigue. Like soda (it is half of what coffee is)? Just curious. I know fatigue is awful but your blood pressure could so many worse things. 

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. 

8 hours ago, p8d said:

One thing that helps my fatigue and doesn’t mess with BP or HR is modafinil.  I don’t take it every day because it seems to lose effectiveness but it helps when I need it.  I have bad crashes when it wears off so take a half pill in the morning and then another half around noon.  

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. 

I'm glad your numbers are doing well. I also hope your current doctor can educate the doctor that made you feel like you were not being cared for with dignity and respect. It's so hard to get proper medical validation when most of your illnesses do not fit within the mainstream of medicine. I really bunt heads with doctors over my APS/Hughes Syndrome diagnosis. They simply do not understand the disease because it's so rare. I finally had one of my nurse practitioners take the initiative and read up on the condition. She no longer gives me a hard time about keeping my INR above a 3.0. But then again, I find that doctors don't even know how to treat some of the mainstream diseases properly. You are a valid medical patient with a valid condition. I hope the offending doc will give you a ring and apologize to you. I hope your numbers continue to remain stable. You are one of the posters on this forum who give me strength. You are fighting this thing tooth and nail and refuse to bow down to dysautonomia. You always have positive and uplifting responses to all of my questions; even if I'm always asking the same question if my BP machine is broken lol. My family called me a hypochondriac again this week because I'm worried about things. I told them the next time they call me that; I will simply refuse to take my blood thinners, have a stroke, and let them wipe me for the next 20 years. That put an end to that lol. 

1 hour ago, StayAtHomeMom said:

Are you doing anything that could be upping your BP, like smoking or caffeine? Even some medications.  My hubby's blood pressure came way down with the lisinopril and no caffeine. And it is staying pretty steady. 

I do drink really strong coffee twice a day because it helps with my fatigue. I won't give that up though lol. I'm good today. I found the current proper balance of meds. 10 mgs of Lisinopril has lowered my sitting BP to 114/80 and my standing BP to 117/90. That little number is still trying to creep up on me, but as long as it doesn't go over 95 when standing and the higher number is good, I'm good. I can deal with that. Lets just hope the doses don't need to be changed again. I know when summer time comes, the doses will need to be changed as heat makes everything so much worse. I wish I could give up the coffee, but it is the only thing that keeps me from being drowsy all of the time. 

19 hours ago, StayAtHomeMom said:

In theory if you take the meds like you are supposed to it will help you get on your feet to help you feel better. 

Have you ever been put on something just to bring down your BP. That seems really high. 

I'm just on the Lisinopril right now StayAthome. I don't need the Clonidine. I used it two days ago though to knock down the spike because Amlodipine didn't do anything. Yesterday the Lisinopril dropped my BP too low so today I am on a lower dose. The BP keeps on changing on me. My ideal control is sitting 109/75 and standing 120/89. That is the sweet spot I used to get with 20 mgs of Lisinopril and .2 mgs of Clonidine. Now I'm getting 88/65 sitting and 100/80 standing. I need to get the sitting BP up a little bit higher without raising the standing BP too much. I wish there was just a set it and forget it pill. Take the pill and just get on with life every day. Sadly, there is no such pill and I need to keep on finding the sweet spot with meds. 

2 hours ago, p8d said:

@blizzard2014  my BP goes up as the day goes on too.  Cardiologist says this is normal, just not as high as mine goes.  Unfortunately, mine doesn’t lower in the evening and I get supine hypertension so I take a clonidine about an hour before I go to bed to read.  I only take a 1/4 tablet at a time, around 10am (BP is too low before this), 1pm, 5pm and 8 pm.  I am hyper sensitive to meds and fluids.  My BP will rise 10-30 systolic in about 15 minutes after drinking 8-16oz.  I also blood pool quite a bit so have to have enough fluid to keep hr under control but not too much to raise BP too much.  I rarely have the balance right for more than a couple of hours on any given day.  Neurologist told me early on we put both the gas and brake on at the same time and try to keep going forward.  A fairly good analogy.  When I started this I had low BP most of the time.  The hypertension worries me more.  If I go to PT or Dr appointments (only places I go) I have to take extra clonidine.  I even have to to talk on the phone because BP jacks up with any activity.  

I'm having a problem finding my equilibrium again. For the longest 20 mgs of Lisinopril and .2 mgs of Clonidine kept me stable for 8-10 hours a day. Then it kept changing. Yesterday I didn't even need Clonidine like I did the day before to stop the surge. 20 mgs of Lisinopril left my BP (sitting BP 88/65) almost all day long. My standing BP was 100/110 over 80/85, so there was still a standing surge going on there, just on a much smaller level due to the meds. Today I just took 10 mgs of Lisinopril and I will see how it goes. I do not get too many side-effects with the lower BP, I just feel more sleepy sometimes. But honestly I still feel light-headed and unwell with low BP, normal BP, and also with the higher BP.  I always feel bad. My headaches and muscle pains are back too which makes me want to get my kidney function tested again. It was down to 43 three weeks ago, went back up, but I think that is what gives me headaches and muscle pains. I'm growing weary of having to re-adjust meds all of the time. The same thing happens with my diabetes meds. I have been having decent blood sugar control for 4 weeks, but then all of a sudden it will go high and I will need to start using insulin again. Just really makes me wonder if my machines are bad. In the hospital on 20 mgs of Lisinopril, my sitting BP was 130/89 consistently and I did not have too many lows. The lowest BP was on the first day when I also had some clonidine in me. It was 109/76. I had to tell them I was on strong meds, because a low BP and high HR (mines was over 100) is a sign of sepsis in patients with a bad Gallbladder. They were thinking I might have possible sepsis. So maybe my machine is underestimating my BP, overestimating it. Nonetheless, I have not passed out from even a few BP readings of 80/60. So maybe my body just has no BP regulation whatsoever and is used to these peaks and valleys. Before meds and discovering all of this, I used to have 2 weeks of extreme fatigue and sleeping and not even being able to remain awake while watching television. Then I would have a few weeks of being alert and sleeping less. Maybe it all has to do with BP levels. 

5 hours ago, StayAtHomeMom said:

Yea I have that problem. I rebelled for a while because I hate taking medication but I have gotten to the point of I don't have a choice. If I don't take it I feel bad and I am tired of feeling bad. 

Yeah, I also rebel against my pain meds. I wean down to 1 or 2 pills a day and fight the pain until I cry uncle. Sometimes you don't realize how much the meds are helping you until they are taken away from you. Maybe one day I will follow doctor's orders and not fight taking my meds. I just feel like giving in completely to the meds is kind of like admitting defeat. I guess 3 weeks since the blood transfusion and my body ate up the other guys blood and now owns it. I went 5 days with BP 120/100 and never a lick higher. That is still considered stage 1. Now we're back into stage 2 and stage 3. 

2 hours ago, p8d said:

I know exactly what you mean.  I hate taking them but have no choice.  One thing you might not be aware of but clonidine has definite rebound effect when you stop it.  For me the scary high BP comes 24 hours later.  I checked with a pharmacist and it’s true so it’s very important to wean off it if you want to stop.  

Yeah, my higher BP always returns about 8 hours after taking Clonidine. But since I do not move around a lot at night, and it is mostly high when standing, I do not re-up on Clonidine at night. My waking BP was 114/100 today. I took .1 mgs of Clonidine last night and within 15 minutes my BP was down to 100/75. I was getting chest pains and feeling really unwell and another BP check when standing showed a BP of 160/110. It was starting to go higher. My sitting BP was 130/96 and not dropping either this time. I feel much better today. I took my Lisinopril and if that does not fully work, I will take a tiny amount of Clonidine. My BP does climb after the Clonidine wears off, but in a very slow and predictable way. Waking will usually be 130/100, then a few hours later 140/108, then a few hours later up to 170/120. It always follows this pattern. It never just jumps that high all at once. It's kind of like putting a frog in warm water and then slowly turning up the heat. But I check my BP sometimes 20 times a day, especially on the days I am not taking any meds, because I want to get a clear picture of how my BP is behaving. I call it "time lapse BP photography!"