I had a few nights in there where I was waking up all night with pain. My hands felt like someone was hitting them with a hammer and Charlie horse cramps followed. I had to massage one hand for 30 minutes to get it to stop locking up. It felt like my forearms and thighs were being ripped on the inside. So much so that I might go and get checked for blood clots tomorrow. Any how I'm just frustrated, but I am glad to have pain control. Lord help me if I had to go through this crap without any pain management. There is always a silver lining. I just feel like I'm becoming a nutcase with all of these crazy symptoms.

I am so sorry that you learned about the new heart problem...
the reason why they weren’t concerned about it was because you probably had no other symptoms.
Your heart has been stretched out by high pressure.most common causes are: uncontrolled high blood pressure, heavy drug use, sleep apnea, like you said. Many people have abnormal EKGs and it doesn’t mean they are ill or going to be ill.
What doctors were you seeing and why?
Hugs

Hey Aronia. I was seeing the heart doc because of the multiple abnormal EKG's. I wanted to see what was happening and also to ask him about the high blood pressure when standing. He dismissed the high blood pressure and refuses to even look at my BP when standing so that was a waste of time. He also told me that 130/100 blood pressure is ok. That it's just the high end of normal and not to worry about it. If I do not take an extra half a pill of Clonidine before work, my BP standing will stay about 130/130 over 95/100. If I take the extra half a pill it will be like 113/88. That is the tamped down version of BP spike when standing. Untreated my BP can range from normal sitting all the way to 170/120 within 1 minute of standing and it will remain high for as long as I stay standing. Clonidine for some reason knocks out the spike in BP. The flu-like symptoms finally lifted on Thursday but who knows when they will be back. Crazy how I force myself to work in this condition and doc's continue to tell me that it's because I'm out of shape. Why do we even bother seeing doctors if everything abnormal is normal? Most people don't spend their entire weekend recuperating from a part time job because they're out of shape for 8 months straight. That's just bull. No one wants to find out what's going wrong with the Zebra patients so they just dismiss all of our complaints as nothing.

Sorry for the angry tone Aronia. How have you been doing? I know you have a bunch of struggles of your own to deal with too. Thanks for taking the time to answer my question.

Its also not easy being a Dr. these days when every patient comes in with a list of every single symptom from a twitch to a lack of breath and a list of already in their head diagnosis' from the good old internet. Dr.'s don't get to be Dr.'s anymore, they get to be, "Cross-off the lists" and "Provers of mis-self diagnosis" for a good part of their day.

Sorry but being out of shape and overweight is a true issue true cause of a body mal-function. But people never bother to get in shape or lose weight to see if there is any truth to it, they just yell foul and say, why do you always say that? Of course its harder on a body to function when your up and working than when your sitting on a couch...that's common sense.

Exercising, losing weight and getting in shape is not the same as forcing yourself to move when you have to work a few hours a week, then not moving the rest of the time and letting your body fall to the norm of inactivity. When we have chronic pain, we get so used to expecting every pain to be controlled, I think we forget that bodies do normally hurt from time to time, we get headaches, we get the flu, we feel like crap...normally from time to time.

And yes I know I am not going to be the popular person for saying...

Your on BP meds to keep your BP regulated, and it seems to be doing it's job per the numbers in your post...what else do you want them to do. If your ticker's pumping well and the Clonodine is keeping the pressure in the range it should be, what else do you want them to do? I'm just asking?

I'm not just a patient complaining to a doctor. I have had blood clots which are known to cause pulmonary hypertension in the lungs that causes the heart to stretch out. How can we stop my heart from enlarging if we don't first identify the problem. Failed lung function tests, enlarged heard, history of blood clots in the lungs all point to chronic thromboembolic pulmonary hypertension. Many patients are not diagnosed with this until they are on deaths door. I will pay out of pocket now to see a specialist who will sit with me for an hour and go over my entire medical history and let me know what's causing all of this.

Also the BP is not under control, because I have to be careful with using meds on the days I am not standing for four or five hours. Right my BP is 117/76 just sitting here. But as soon as I stand up, my BP shoots up all the way to 148/109. I checked it four times in both the sitting and the standing position and averaged the BP out. I can replicate these results all day long. So, if I take the extra Clonidine, it will fix the high standing BP, but then lower my sitting BP to 90/60 and I will get tired and pass out. I hardly call that good control. Statistics show that patients with wildly swinging blood pressure have a higher risk of strokes and heart attacks then those with just straight up constant high BP. My body is getting shocked every time I stand up, then back to normal when sitting, then back to high when standing. Repeat this all day, every time I get up and move around and the headaches start and then I feel very unwell. Then the left-sided chest pain comes, heart palpitations, and fast heart rate follow. These are all valid concerns I have. I want answers and I deserve answers. The flu-like symptoms and hands locking up with Charlie horses are back because I over-did it at work again. So, what do I do today, just stay sitting on the couch all day to control my skyrocketing BP, or take more meds and risk going too low. It's just a hassle to have to worry about this every day. It's not just take a pill and all is fixed and the docs downplay it all. Also, having a consistently elevated diastolic blood pressure reading of 100 and over causes abdominal aortic dissection after a few years. It's not normal to have a systolic blood pressure reading that high.

No worries, blizzard.
I think different doctors have different approach to hypertension. It all has to do with who you get. I have a cardiologist who is not in the least concerned with me . He doesn’t even do a med red when I come for my annual visit
If your insurance allows, go see a nephrologist. Explain to them that you want to see a nephrologist for a second opinion regarding your blood pressure medications.

Jer,

What about your Diabetes? Is it being controlled well these days? You were having trouble with it before.

Diabetes and increased blood insulin affect your blood vessels, which affect your kidneys, making them retain salt, which affects your blood pressure control...

Seeing a Nephrologist would be a good idea, even if your going to see another cardiologist on your own dime.

Salt has nothing to do with this issue. Moms told me salt is causing this and I told her she was plain ignorant. Last night I has a sitting BP of 100/72 all night long. As soon as I would stand up, my BP would just jump to 150/111. It stayed like that all night long. I went to the grocery store with heart palpitations, lefe-sided chest pain, fast heart rate, dizziness, shortness of breath, and headache. I can definitely feel when my BP is whacking out. I dared not take any more meds due to the fact that my BP was low when sitting. How do you control this? It's freaking driving me mad. It's some form of autonomic dysfunction. My body is not regulating itself properly. If It was salt, my BP would be high all of the time. Also, my body does this even on days when I eat low carb and do not have to use insulin to control my blood sugar. Sometimes it behaves for a while with the standing spikes, other times it goes really out of control and it unpredictable. Only the headache and blurry vision give me a reason to do a spot test to see what's happening. Now that I stopped working part time and sit here on the couch again, it's not a problem. Just have to be careful whenever I stand up longer periods of time, because that's when the huge surges happen. Also, my legs are getting weak again to the point where they're burning and cramping just walking through the grocery store. Could be an issue with spine pain doc wants MRI of spine or it could be peripheral artery disease or just damage from undiagnosed clots in the legs. It used to be just my calves burning, now it is thighs and calves burning upon exertion on both sides. Weak legs sometimes want to give out and wobble on me almost snapping my knees. Maybe I'm headed for a wheelchair. Who knows.

I wasn't talking about salt like you eat Jer, that had nothing to do with it. I was talking about how your Kidneys were working as they regulate your Blood Pressure.

Have you considered going to the ER when your having one of these attacks if your Dr. won't do anything? Have you set up an appt. with a Nephrologist yet?

The ER doc is the one who caught it. 170/120 while standing and then 117/76 while sitting in a hospital bed for 2 hours. He was the one who prescribed clonidine which is the only drug that works on orthostatic hypertension. I was actually going to have to stop working 4 months ago because my BP was going to 189/125 when working. That was even with 50 mgs of Lisinopril. Once I started the Clonidine, my BP would hover at around 130/95 most of the time when standing. I could sometimes take extra Clonidine and get my BP down to 119/89 but then I would be tired and mentally out of it at work, so I would just shoot for higher BP, but not high enough to be over 140 on the big number or over 100 on the little number. Kind of like, ok we're not ever going to have normal BP, but I will keep it under stroke damage levels. I notice now that I am taking it easy, I am not going to the bathroom more than a few times a day. That is until I stand up and do stuff. Then I begin the urinating, sometimes every 5 minutes. The BP is also high, but since it is good when sitting, I just stay sitting a lot. Also, I cut way back on my pain meds now that I am not working. I can bear the pain more when elevating my bad leg. I will have the doc cut down my script back to pre-working level.

If I skip my meds one day, or take then too early, I can replicate the huge jump in BP all day long. I can do it over many different machines too. The only other thing that can cause high looking BP on the digital machines is an uneven heart rate. Maybe the meters are wrong, but I can feel the high BP. One doc told me the high standing BP is because of the pain I have when I stand up and that sitting reduces the pain and lowers the BP. That is another theory they have. My PCP says it is stress from the job and liable blood pressure from emotions and to get a less stressful job. So many different things to think about. I am currently looking for someone at a university to test for autonomic dysfunction. A tilt table test can also be used to diagnose orthostatic hypertension caused by issues with the presser reflexes inside the neck.

It just scares me that the BP can whack out at any time and give me a stroke. I can't live my life hooked to a BP machine. I gave up my CDL last year because I was too unwell to even remain standing In line while waiting to get it renewed. I had to sit on the floor like an old man. I didn't know about this issue then and was more than likely suffering from stroke level BP when standing and didn't even know it. Getting tested for SLE Lupus and all kinds of other stuff because I felt so unwell like I am dying, and all along it was massively high BP levels. I could have saved myself two in-needed CT scans, a VQ scan, and other tests. I only figured this out when I accidentally checked my BP when standing and noticed a pattern. I had to be my own medical detective.

You probably should be checked for more underlying disorders. A sleep disorder, heart problems, autonomic dysfunction, plus whatever pain you have (haven't read your posting history) are not common in any one person, even if he or she is 100 years old. One thing specifically to look for - with maybe doctors deeming you "young" at 40 because you look young - is Ehlers-Danlos Syndrome, which can involve all the symptoms you mentioned (except maybe diabetes). Its official symbol is the zebra. A rheumatologist or a geneticist is the specialist most likely to properly diagnose that and similar disorders.

You should read his history, it's DBT's and blood clot issues in his leg.

Been a while since we've seen you around here GM.

I'd noted the diabetes, and I vaguely remember the blood clots now. Not knowing much about diabetes, I didn't realize it can do a lot of damage to blood vessels. Still there's more to the story that seems unrelated to diabetes, leading me to think something else might be present and that in itself might have contributed to the diabetes. Some doctors seem to wonder that, too. Anyway, something needs to change, because that's a lousy way to live.

I got the diabetes under control. Some days I eat very low carb and control my sugars that way, other days I can eat an entire large pizza after injecting 50 units of rapid acting insulin and have completely normal blood sugar 1-2 hours after injecting. I know high levels of insulin are also not good, but I take that over my blood sugar going over 200 any day of the week. I think some of this is the sleep apnea causing the diabetes and the high blood pressure and elevated pain levels, but I failed wearing the mask. I can tolerate when the pressure is like 15, but once the machine ramps up to 21, I can't tolerate it. The BIPAP machine also breath for you whenever you pause breathing, so it will try and force you to breathe every time you swallow. It ramps up my anxiety waiting for the thing to breathes for me every few seconds. I just can't fall asleep with it on no matter how tired I am. I don't know who to turn to for help as my doctor only wants to lower the pressure setting but also says that lower pressure setting will not be high enough to stop the disordered breathing. I apparently have a severe blockage in throat and also some central apneas where the machine has to breathe for me. My oxygen levels are around 88 all night long steady. So damage is being done but I can't get acclimated to the mask. Doc says no mask and I will continue to have the other issues and a hard time losing weight as my stress hormones are on overload.

Genuine, I looked in to those conditions, but do not have hypermobility. I also know there is one that only causes vascular issues. I have a very rare syndrome called Antiphospholipid Antibody Syndrome. It is rare enough and can cause such weird symptoms that it was even on an episode of House MD. The episode where a millionaire gives away all his money and then Dr. House figures out the issue. The start the kid on blood thinners and his weird symptoms go away. I think a lot of my issues have to do with micro-emboli that do not show up on scans. A lot of people with APS have been misdiagnosed with Multiple Sclerosis until they have a brain scan that shows no lesions. This is due to small emboli in the spinal cord. This condition has also caused acute psychosis in one case that was reversed with blood thinners. The disease can cause heart attacks and heart damage in people with the condition who have no blockages on scans and no signs of heart attack. Clots can form anywhere and sometimes disappear before being seen on scans. This condition also causes fractures in the feet and avascular necrosis, especially in the hips. It causes brain fog, anxiety attacks, ringing in ears, visual disturbances, high blood pressure. A gang of symptoms that are not understood by most doctors as the disease is rarely discussed in medical school. It is poorly understood and most doctors will say it only causes blood clots in the legs and lungs and that once on blood thinners the disease is under control. Before starting blood thinners, I couldn't even walk through Wal-Mart without my legs burning so bad, I had to stop and rest half way through. It wasn't from being out of shape either, because same thing happened as a kid. I would have same symptoms from trying to run the mile, or if I rode my bike longer than a mile. Legs would cramp and could go no longer. I had to walk the mile and could never run more than 1/4th of the mile before burning, cramping, and heaviness in legs. Once I started blood thinners, my walking stamina increased big time. It still takes way longer before my legs burn to this day, but if I walk too far too fast, I will get burning and cramping to the point of having to stop for up to 15 minutes before my legs feel any better. I wouldn't even be able to run from a rabid dog trying to attack me once I have passed a certain point of walking, or walking too fast. So whatever this is has a lot to do with circulation.

I have consistently elevated APS antibodies in the high level. There is low, intermediate, medium high, and high. So, the antibodies are attacking the bloods and blood vessels. I just can't find any specialist here in CA to validate my symptoms. There is a great doctor in Colorado who trained under Dr. Hughes, the doctor who first identified this disease in the eighties. She has helped some of her patients "win" their disability cases by writing detailed letters to the SSA describing how disabling the symptoms can be in some patients as this disease is not even on the blue book of listings to qualify for SSDI. Some patients have clots in the legs and lungs and seven months later they are running marathons again. Some have clots and become chronically I'll. Some patients have extremely high antibody levels and no symptoms at all, no clots, nothing, and they do not need blood thinners. Usually these patients only have issues when they are pregnant. The disease only causes still births and death to the featus due to thrombosis. A famous actor had this. But the disease does not cause issues once the pregnancy is over. It only activates when pregnant for these women. Some patients have very low/borderline antibody levels and extreme symptoms. My blood doc said that everybody's antibodies are different and do different things. Some patients only have mini-strokes and cognitive dysfunction. One man in the UK was put in an institution for Alzheimer's until he was examined by Dr. Hughes and determined to have cerebrovascular Ischemia due to APS. He was started on blood thinners and is not back home. He still has some permanent damage from being untreated for many years, but he is able to function and be home. He just has pain and wild mood swings as the APS damaged part of his brain. But here in US, they do not understand this disease at all.