khaarina

I agree with Arizona girl. If you feel the meds are too much, you should definitely make that clear to your doctor. Don't let him blow you off, docs can be good at that. If he still doesn't listen, get a second opinion. I've seen 20 something docs (including specialists) since I got sick 2 years ago. Many of them knew very little about dysautonomia and some had never even heard of it. Unfortunately for us, finding the right doc is hit or miss. I also agree that starting on several meds at once can really complicate things when trying to figure out which med helps what symptoms. If your doctor hasn't explained exactly what each med is supposed to do for you, you may want to ask him that.

How much Midodrine are you taking? Midodrine can cause bradycardia, especially if you are on too high a dose too soon. It happened to me when I tried going from 2.5mg to 5mg. Also, Midodrine wears off after 3-4 hours. If you are only taking it twice a day, that only gives you 6-8 hours effectiveness.

It is the only option for me, and I have tried everything. I would suggest trying a smaller dose. I started out taking 50mg, but I eventually realized I only really need 25mg.

I have had a very good experience with Midodrine, so I would say it is definitely worth a try. You'll probably get a tingly scalp, but I kind of like it because this med has a short life and the tingling lets you know it is in your system and working its magic.

Based upon my symptoms upon waking, I believe I have low blood pressure while asleep. I know that the main concerns of hypotension are falling and fainting, which can't happen since I'm already lying down, but it is pretty disturbing to think that I might not be getting enough blood to my brain and other organs while I'm asleep. Plus, I feel absolutely terrible in the morning, even when I wake up naturally (without an alarm). I am currently being treated with Midodrine which is very helpful during the day, but I was instructed not to take it at night because it might cause high blood pressure while supine. Has anyone else had this problem? Any ideas on how to treat it?

Yes, I yawn constantly since I got sick. I also get these half yawns, where I start to yawn and I don't have enough breath to finish it. It is one of the most annoying feelings ever!

I've been taking Atenolol for tachycardia for over a year and it has never seemed to help me. Then my Cardiologist put me on Midodrine and it has helped a lot with my tachy and other dysautonomia symptoms. So last week I decided to try stopping the Atenolol. My GP suggested I start by taking half the Atenolol for 2 weeks while monitoring my blood pressure. Since then I have had high blood pressure and headaches. I am wondering if it is the Midodrine that is causing the high blood pressure or if it is because I have been on Atenolol for so long. Maybe my body just needs time to adjust to the lower dose of beta blocker? Anyone else have this problem?

I have had a sharp pain in my upper left arm for two years, since all of my symptoms started. It gets worse whenever my symptoms flare so I know it is somehow related but I don't really know what it is. I got Depo Provera shots in that arm years ago and it feels similar. I don't know. It is the one symptom that has baffled me the most. Oh and yes, I get nauseous a lot too.

Have you tried reducing the dose of benedryl? When I started taking 25mg instead of 50mg I found that the effects wore off after about 10 hours, which is perfect for me because that is about how much sleep I need these days to be well.

Before my TTT, I had never actually passed out, just came very close several times. My ttt was a pretty miserable experience and I'll never do it again, but it was worth it. I walked out of there with real, solid evidence of the symptoms I face everyday and soon I was put on a medication that helps, finally. I was afraid it wouldn't show anything too. I didn't pass out right away, but my vitals got all crazy like they do and they doctor knew right away that the test was positive. So whether I passed out or not, it would have been positive.

I've tried just about everything and the only thing that works for me is a small dose (25mg) of Diphenhydramine. You can find it in over the counter in Benydril and sleep aids. I take it about an hour before bed and it puts me right to sleep. Good luck!

I have always had problems in elevators, I think it is one of my earliest symptoms. It is also the location of my first near syncope episode when I was 13.

Oh yeah, definitely a common problem for us. Heating pads help me quite a bit. Improves blood flow to the area, I think, and it is relaxing.

For me I think it is the POTS. Since I got sick I have had many moments where I felt off-balance. It even caused several falls, especially in the shower. I remember one time my husband and I went to a hotel. I took a shower and for the rest of the night I kept looking for marble-shaped items to put on the floor and see if they would roll. I was trying to prove to my husband that the floor was not level. It turns out the floor was fine, it was just me lol. My off-balance moments were always triggered by the typical POTS triggers (standing still, showering, raising my arms up, etc.) rather than anxiety, but then anxiety is also a trigger of POTS symptoms so it could be both.

I had sinus tachy for over a year, it was exhausting! I tried various SSRI's and beta blockers and none of them helped much, if at all. I also tried many different things to combat the sleep issues and most of them didn't work. Then I was lucky enough to find a Cardiologist who has dysautonomia. It was totally by chance, I just happened to move near his office, so that is where I went. Anyway, Right now I am on 2.5mg Midodrine, 25mg Atenolol (beta blocker), and I take 25 mg benedryl at night. This is working for me so far. Since I started Midodrine my resting heart rate has been consistently between 60 and 80 (which is amazing), but I'm not supposed to take it at night. The Benedryl keeps the adrenaline surges away so I can fall asleep easier and I have fewer episodes of waking up. I also try to eat something and drink a lot of water right before bed. Hunger and dehydration can cause a lot of problems. Benzo's are also helpful, but I try to avoid them as a long term treatment because of the possibility of dependency, withdrawal, and long term cognitive effects. However, they can provide much needed short term relief while figuring out what to do in the long run. I have been looking into taking Clonazepam just at night in case the Benedryl stops working. Maybe since it is just one dose a day there is a lesser risk of negative effects.

I had a similar battle with nerve pain. My medical problems began with neuromuscular symptoms including nerve pain in my arms and legs and later my jaw. Unfortunately, I don't have any advice for you because I also could not find anything that helped with the pain. I tried Nortriptyline, Tramadol, Tylenol 3, and of course many otc medications, none of it helped. The good news is that the pain went away on its own, so it is possible that it will get better. If I were you, I would see a neurologist before starting any new drug that is aimed at relieving nerve pain.

Hmmm, maybe this is part of the reason we often feel so bad in the morning.

I was on Florinef for about a month and I had bad headaches the whole time. It also made my insomnia worse, I think. It didn't help my OI at all. I didn't have any additional problems when I stopped taking it and started Midodrine. My headaches vanished within a couple of days, but like I said I was only on the Florinef for a month. According to drugs.com, there is a possibility you will get withdrawal symptoms if you stop Florinef suddenly.

Like many women with dysautonomia, my symptoms are much worse before, during, and after my period, so my doc gave me a prescription for Loestrin 21 1/20. He said it should eventually stop my period. Has anyone else here tried using BC pills to stop their periods? Did it help? Were their any adverse effects?

I haven't heard of POTS causing respiratory failure either, but I know the feeling well. It is pretty horrible. Head elevation and compression are the only things that have helped me. They don't help much, but it's something. Please let us know if you find anything else that helps.

I've been dealing with this same issue. I was instructed by my cardiologist not the take Midodrine four hours before bed, so by the time I am in bed, I feel like I'm jumping out of my skin. My primary doc doesn't understand my condition. He has put me on several different prescription sleep meds, but none of them were right for me, so I've had to figure out the sleep problem on my own. After a lot of research and trial and error, I think I have finally found a solution that works for me. About an hour before bed (just when the Midodrine is really wearing off, I drink a cup of hot Lipton tea (not decaffeinated) and then I take one otc sleep aid (25mg Diphenhadramine), which I believe is the same as Benadryl. The tea keeps my blood pressure from dropping and my heartrate from increasing too much, then the sleep aid prevents the adrenaline rush. I like this combination because I feel like I am preventing the sleep problem rather than trying to fight it. It is a minimal amount of drug and it feels natural, like I'm able to fall asleep the way I used to before I was sick.

I wish I knew! The one most constant symptom I have had since my symptoms started a year and a half ago is a sharp stabbing pain in my left arm. No one knows what it is. I even got an x-ray on it, but it showed nothing. Since then I have also had burning pain in my forearms and thighs as well as twitching muscles, TMJ, and uneven pupil dilation--all neuromuscular stuff I believe. The docs usually just give me a blank stare or stutter about Fibromyalgia or "some kind of peripheral neuropathy." Please let us know if you figure it out.

I kind of disagree. We all know that having a chronic illness means that doc appts. become a constant part of your life, so it's important to prioritize and balance them. If I have a Cardio appt. because my doc thinks something urgent might be going on, heck yeah I do whatever it takes to get in asap. A ttt, on the other hand, is important but not necessarily urgent, so I would try to make it fit into my life a little easier. For the first year of my illness I let medical stuff take over my life for two reasons: 1. Because I thought that my condition might be urgent, and 2. because I thought that once I got a diagnosis I would get treated and it would be over. So why not do whatever it takes to get it over with quickly, right? Ha, nope. I'm diagnosed but still sick and probably will be for a very long time, so I believe that balance is essential for making life with a chronic illness bearable.

I'm thinking along the same lines as peregrine. I get adrenal symptoms w/o tachy, but only since I have been on Midodrine, which lowers my heart rate significantly. Lately I've been having chest pressure, palps, hot flashes, irritability, chest pain, and left arm pain, so I expected my heart rate to be up, but nope, it stayed right around 70. Before the Midodrine, these symptoms usually coincided with tachy.

Yep, and you can compare your scores to table 3. Thanks for the post, this is great!