khaarina

Been have a lot more eye sensitivity than usual: to tv's, computer screens, and Iphone. I find myself squinting, eyes watering, burning, etc. when I am looking at any screen, even for a short time. I know, I should just cut back on the electronics, but I have to wonder if it means anything since it is so much worse than usual. Anyone else have this problem?

Has anyone here experience a stroke? I haven't, fortunately, but due to all of heart related problems, particularly blood pressure, I am beginning to have some concerns about the possibilty of a stroke. My grandmother has many of the same kinds of problems I have, (high blood pressure, passing out, etc.) but they never figured out the cause. Over the past twenty years or so, she had several "mini strokes" and blood clots before finally having a major stroke which has left her mentally disabled. Now I am wondering what my chances are of having a stroke and how can I prevent it?

Yeah, part of me wishes I hadn't "rocked the boat," my blood pressure has been all over the place the past few days. Hopefully I adjust soon and it will have been worth it. I am sleeping a little better, about as well as I was on Atenolol so not great, but not as bad as when I stopped and then started again. I have also has some vivid dreams and even what I think was a hallucination. I hadn't been able to sleep all night and I was laying in bed the next morning kind of in a daze and I thought there were bugs all over my blanket. It only took a minute to realize it wasn't real, but it definately freaked me out. I used to think beta blockers were no big deal because they are so commonly prescribed, but not any more.

It was a bit better today. Maybe the new beta blocker is starting to work. I will give it some more time before bothering the doctor. Thanks.

I just started Metropolol three days ago, I was on Atenolol but I thought it might be causing my insomnia so he changed it. I think the BB is for tachycardia, but I'm not sure. He wasn't very clear. I've had these symptoms for two years, but I didn't know whether it was high bp, low bp, tachy, or a variation of these. As far as I know it doesn't drop until I lay down, but I am afraid to push it too far. I will call my cardio Monday and let you know what happens. Thanks for the responses.

My Cardio put me on a new beta blocker and told me to start doing 2 min. standing tests every day for a month, so for the past three days I have done this and everyday I am getting a big jump in blood pressure after 2 min. of standing. Here are my numbers so far: laying: 130/90BP, 81HR Standing: 144/96BP, 96HR laying: 120/79BP, 81HR standing: 137/93BP, 104HR laying: 119/79BP, 80HR standing: 150/122BP, 106HR During the standing part of the test I get tingly, hot, sweaty, shaky, and my arms feel swollen. I have also had a bad hadache for the past three days straight. I am worried that my blood pressure is getting too high to be safe, but it does go back down when I lie down for a while. Should I keep doing these tests for the rest of the month or stop and call my doctor?

The problem with a sleep study for insomiacs is that if you don't sleep enough, you don't get any real answers and you've wasted your time and money. I slept a total of 3 hours during mine and all I found out was that I have trouble falling asleep (lol), I move a lot when I'm asleep, and I grind my teeth. I suggest first doing a throrough investigation on any health conditions she may have that could be causing the insomnia (you mentioned thyroid problems) as well as side effects of any medications she is taking. I suspect mine might be caused by my beta blocker or my thyroid/thyroid meds.

Thanks, I will bring these up to him if the Metropolol doesn't work out.

So I went to my Cardiologist today and told him that I believe the Atenolol is causing my insomnia and he just shook his head and said "Nope." He said that beta blockers can cause insomnia, but that usually happens with higher doses and I'm only on 25mg a day. He then went on this spiel about how patients shouldn't look too much into symptoms and side effects because they just end up conjuring new problems. So we should just be sick and stop trying to figure out why and how to fix it? Um, no! He did switch me to Metropolol (another beta blocker) just to appease me, but he wouldn't even consider putting me on anything other than the beta blocker. I'm going back in a month (maybe). I guess we will see then if I get any sleep this month (sigh).

I have been on Atenolol for tachycardia for about a year and a half. Lately, I have had suspicions that some of my symptoms might actually be side effects of this drug, so I tapered off. Once I was off completely I noticed that my insomnia was gone. Insomnia has been one of my biggest problems for a year and half half and suddenly it was GONE. But, as expected, my tachycardia came back and I had to start taking the Atenolol again. As soon as I started taking it, my insomnia was back but my heart rate was back to normal. I also think that Atenolol is causing other problems and may even have caused or exasperated my NMS. Has anyone else has similar concerns about beta blockers? Are there other options for controlling my heartrate?

I have this too: muscle weakness, twitching, burning, tingling, and itching. My doctors told me that it is peripheral neuropathy, which is related to autonomic dysfunction. It has many causes, but I believe mine was caused by hypothyroidism. Many of these symptoms have improved or gone away since I corrected my thyroid, but I still have dysautonomia, and some tingling and weakness.

Not sure if my eyes roll or flutter, but I do find myself squinting a lot in the evening as my last dose of Midodrine wears off. I skipped my follow up appt with the opthalmologist, probably shouldn't have lol.

Yeah, I get this. I also assumed it was the adrenaline, but don't really know

Yes, I had one episode that lasted about an hour, it woke me up in the middle of the night. I thought it was fever, but my temp was normal. Besides that, I have had twitches and tremors in the past, but they paled in comparison to this. It was incredibly scary and exhausting. Yes to the pupil abnormalities too. I was diagnosed with Adie's tonic pupil. I didn't look in the mirror during the tremors, so I don't know if I experienced any pupil changes at that time.

It didn't help me either. The only thing that has improved my symptoms is sleep (not easy to come by), avoiding triggers (heat, stress, standing, etc.), and Midodrine. Honestly, I think salt loading actually made me feel worse.

For the past few weeks I have been experiencing inappropriate hunger sensations. It is like an empty feeling in my stomach, sometimes with nausea. At first it was a strong sensation that came on suddenly about 3 hours after meals. Now it is more like a nagging hunger that I feel almost all the time, sometimes even if I have eaten a large meal recently. I am not losing any weight and I've tested my blood sugar in the past and it was fine. Also, my thyroid still tested slightly low a couple of months ago so it shouldn't be that. The only change in meds was that I stopped taking Atenolol and I switched from otc Omeprazole (Prilosec) to prescription, but it is the same dose so I wouldn't think it would be any different. Anyone know what this might be?

I haven't experienced anything this severe, but when I feel really bad I get a lot of tension in my face (especially jaw) as well as in my neck and shoulders.

I suppose it means something different for everyone and for most of us it changes all the time. You will have to ask your doctor to clarify if you really want to know what she meant, but she probably doesn't really know yet. Personally, I try not to think too much about what I will be able to do physically. I find it is better to focus on how I will work around whatever road blocks I end up facing. Over the past two years I've had to readjust my life goals so many times to suit my health situation that it has almost become a game of "how clever can I be?" What I want the most right now is to go back to school and finish my BA. I was attending a big campus about an hour from my house. If I go back there it will mean I will need to be able to drive, walk, sit, and think clearly for several hours a day AND not have more than a couple days where I am laid up in bed. These days, that is a lot to ask because at the moment functional for me is getting through a short grocery store trip without paying dearly for it for the next day or two. So, I am looking into ways to alleviate some of the strain. I thought about moving closer to the campus, taking as many online classes as possible, paying the more expensive parking to reduce walking, looking into the campus' disability services, etc. If all else fails, I may have to transfer to an all online degree. I will be very upset for a while if I have to do that, but it is better than not finishing the degree, so I will just have adjust my expectations again and make it work.

I prefer Sci Fi. You can find my favorites at http://www.goodreads.com/user/show/5286744-sara

I get my meds at CVS and sometimes I have to pay for them out of pocket so the pharmacist put me on some kind of prescription plan and now whenever I have to pay for them I get them up to half off. I don't know what it is called or what made me qualify for it, they didn't explain it at all, they just put me on it, but it is worth asking about. Price checking is good too, I did this before they cut my costs at CVS and found that walmart offered significantly lower prices on some meds, but not all.

I'm not sure how to respond to this except to say that I've been where you are and know how you feel. It is such a long road trying to find the right doctors and the right meds, but I can assure you that if you keep pushing it will happen. You mentioned many of the meds I tried. None of them worked for me either. Have you tried Midodrine? When my cardiologist prescribed it I was really down on pretty much all medications, then I took my first dose and it felt like something had breathed life into me. After that, I discovered that Benedryl helps me sleep, and getting regular sleep helped me feel so much better during the day. Then I tried Prilosec and many of my gastrointestinal problems melted away. It took about 2 years, twenty-something doctors, and who knows how many tests and medications to get to where I am at, and I am still not back to my old self, but I eventually found the relief I needed to enjoy life again and I know you will too, but only if you keep fighting. You are at war with your body and that really, really *****, believe me I know. The good news is, you are here on DINET so you know, to some extent, what is going on with your body. It may not seem like it, but it gets better from here.

I've looked into this too and there seems to be some conflicting ideas out there about how much water is too much. This is a good question for your doctor, but until then, be sure to spread it out so you are not drinking too much all at once.

Over the past several months I have noticed that my shoulder is gradually becoming a problem. When I lay on my side in feels like it is getting slightly pushed out of its joint, and it aches whenever it rains. It is my left shoulder, I am right-handed. I don't recall ever injuring it and I am not a particularly active person so it isn't over-used. It seems that rheumatoid arthritis is common with dysautonomia, although I don't understand the connection. I don't have any reason to believe I have eds. Anyone else get joint problems like this without eds?

Thank you for this report. I can't afford to go to any doctor I choose. So if I had gone to see this doctor and ended up with no answers, it would have been total devastation. That's why these types of reviews are so important.

Yeah the Isuprel is rough. I passed out within maybe 2 minutes of the injection, but it was a long 2 minutes, felt like death. I also felt the same way you did about the 75 degree tilt. When they stopped raising me up I was like, really? I felt like I might as well still be lying down and I got really nervous about leaving there with a false negative. I didn't get the quick reaction I normally do when I am standing on my own, not until the injection, and I blame that on the 75 degree tilt. Anyway, it sounds like your doctor is wary about diagnosing you with POTS. I would definitely get another opinion and keep looking for a cause until you are comfortable with the answers you have. Oh and the vein thing, YES. It has been that way all my life. Some nurses say my veins are small, some say they move around when they insert the needle. I don't know what it is exactly, but is is not unusual for me to leave the hospital looking like a heroine addict with bruises all over my hands and arms. I'm kind of a shy person, but when it comes to needles I tell them what their in for. This makes them take more care or enlist someone more skilled to do it.