Gena

I get occasional bouts of high resting tachy as well. I can be lying in bed trying to sleep and my heart rate will be in the 80s for several hours, even if I take a Klonopin. It can be after I eat or totally not related to anything. Very uncomfortable I agree!! Sometimes the tachy will subside a little if I drink more fluids. It sounds like maybe your body is/was fighting off a little bug of some sort since you said you had coughing and post nasal drip. Perhaps your electrolytes got out of balance as well. If I feel a little under the weather this tends to give me tachy also. You are not alone!! I've learned that the tachy part of POTS doesn't just occur while standing! My cardiologist said they should loosen the strict definition of POTS since the tachycardia can occur in any position really. Hope you feel better soon. Gena

Hi Mandy and Happy New Year to you. I hope you find Dinet to be a wonderful place of support, inspiration and information. The people here are wonderful. Welcome!! Gena

HI BriBri, Welcome to the forum and Happy New Year! I tried Midodrine for 3-4 days at a small dosage and it didn't seem to raise my blood pressure. I increased the dosage the last day or two and it still didn't help. Since I didn't notice a difference, I stopped taking it. However, there are many others on the board that take Midodrine and it's worked very well for them. You can do a search for midodrine by clicking on the search link in the upper right corner. There have been many posts on this topic. Hope it works for you. Best wishes. Gena

Julia, I am so very sorry for all the pain and symptoms you are dealing with. You are a strong willed lady! You are right not to push yourself. Do everything you can to take care of yourself. It definitely sounds like you need to talk to a neurologist again to get to the bottom of what's going on. Well I just wanted to let you know you're in my thoughts and prayers. I hope your brother's surgery goes well and that he makes a full recovery. I'm sending you many great big hugs. Hope this year gets better for you soon. Hugs, Gena

I have MVP and POTs too. Those attacks can be quite frightening. Make sure you're loaded up with fluids, salt, electrolyte drinks, etc. You could talk to your doctor about trying a different kind of beta blocker or maybe something like Klonopin or Xanax in small doses to help ease the anxiety, as the anxiety just makes our symptoms snowball!! I take Klonopin at night to help me fall back asleep after getting up in the night to use the bathroom. This is when my BP is the lowest and I feel really anxious and get irregular heartbeats. The Klonopin seems to help calm my ANS down. I also am a big fan of natural methods of relaxation like meditation, yoga, etc. Magnesium can help with heartbeat irregularities too and calms your nerves and muscles. I take a product called Natural Calm at night. It's a powdered form of magnesium citrate that you mix in warm water like tea. It comes in several good flavors. If the symptoms persist though, I would definitely check it with a doc for some peace of mind. Best wishes, Gena

I agree with the others about getting a tilt table test done. Also, POTS symptoms can occur in anyone who is mostly bed bound for a long period of time because the body, heart and ANS become deconditioned and not used to sitting or standing. In a healthy person, the POTS symtpoms will go away once the person becomes conditioned and active again. It could very well be POTS, but if he's been couch/bed bound for a long time now, then the POTS symtomps may just be a temporary condition and not related to his back. I would definitely look into getting a TTT done though. So sorry for all that you are going through. Keep us posted on what you find out! Hugs, Gena

Hi Jessica, I am soooo happy for you. Sounds like this guy is a keeper. And your new little baby has grown so much since the last pics you posted. Good to see your post on the board. Hope you're feeling good these days. Take care and best wishes for the new year! Gena

Hi Julia, Just a quick note to send you hugs and healing vibes on Christmas Day. Sound like you could use them. I almost always get palpitations/arrythmias/tachycardia if my digestive system is out of whack...and I normally cause that if I eat too much, too much sugar or too many refined carbs. I normally try to avoid all of these foods, but it seems during holidays this type of food is all around us and sometimes hard to resist. Sometimes my digestive system will be upset not by the foods I eat, but when ANS gets over active. So sometime's it's hard to tell what's causing what. When I'm feeling POTSy though, it really doesn't matter what I eat, I can get tachy and irregular beats. I get hyper-adrenergic spells too, although this only brings my BP up to a normal level from a very low level. I never get high BP, sometimes borderline but only for a few minutes. I know you normally eat pretty well, but try to avoid that sugar. It stresses our adrenal glands even more. Well, girl I'm glad you made it through Christmas eve and baking cookies. I hope you are resting quietly today. Hugs, Gena

I agree with Emily on all of her points, especially about making sure you're not stressed out about other things when trying a new med and not during the holidays when there aren't any doctors around to answer any questions you might have. I was nervous to try the midodrine I was prescribed. I had a little scalp tingling, which was an expected side effect, but nothing else. I think sometimes, like Emily says, you have to try it, just so you know you did. It may help and it may not, but at least you gave it the old college try! Best wishes and Happy Holidays. Gena

Bamagirl, I am so sorry to hear that you're feeling so awful. I don't know all the details of your situation..but please don't do anything foolish. Talk to a doctor or family member right away. Are you currently on any meds? Do you have a doctor or a specialist you can see to talk about trying new meds or getting some further testing done? If you live in Alabama (I'm assuming you do by your user name), there is a Dysautonomia clinic in Birmingham. There is also a Dr. Sawyer who specializes in POTS and used to work and that clinic, but she has branched out on her own. Do you have any friends or family that can help care for you and offer support? Even little things like bring you some funny movies to watch or just be there to listen? Have you tried listening to calming music or meditation CDS? These might help calm your ANS. It sounds like you might benefit from seeing a doctor. I know when you can't sleep it makes everything much worse. It's like your body is just fried and tired and life is not enjoyable. I've been there and I know how awful it is. PLEASE do seek some help from a doctor, friends or family. We are always here for you on DINET, but it sounds like you need more than just cyber hugs! You can get through this. I'll be keeping you in my prayers. Let me know if you need any info on the clinic or Dr. Sawyer. Gena

Jenn, I'm kind of in the same boat you are. I usually feel well enough to get by with all the standard non-pharmaceutical treatments for dysautonomia. However, these past few months I crashed very hard from all the stress at work and went to my cardio at Mayo again. He gave me a low dosage midodrine to try (it acts as a vasoconstrictor). He said I could just use it whenever I felt I really needed it along with a beta blocker if I needed that too (ie. for those pots hole phases) and then I could decrease it and stop anytime. He said he'd rather that I do salt, fluids, etc. and just take meds for the bad times, since I function pretty well without them. That made me feel better, because I didn't want to be stuck taking meds all the time either. I am not sure if you can just take mestinon on an as needed basis??? Anyway, the midodrine didn't really seem to help me, and I even upped my dosage and didn't notice any difference in my BP. But at least I have the midodrine and a beta blocker on hand to try again when things get bad again...which I hope isn't anytime soon! The mestinon might make a world of difference in how you feel, so it's probably worth a try. Gena

I do this often when I'm going through a bad potsy spell. I have theorized that my heart rate and/or BP get so low that my body kicks in high gear to get everything going again and jerks me awake. My heart will often race or have arrythmias when this happens too. Very scary feeling and very annoying, but somehow my body still keeps on truckin! Gena

Blackwolf, I am so glad to know you are hanging in there. Surgery certainly takes its toll on us. I am sending healing thoughts your way. Thanks for wishing us all a happy holiday. I hope your holidays are filled with lots of love and laughter. Thanks for checking in. Gena

Oh Julia, I am sending so many prayers out for your brother and his family. I will hope for the best. Hugs, gena

I think most of us are fairly sensitive to herbs/drugs or any substance that alters our body's chemistry. This can be very frustrating, but through trial and error you may find something that actually works to help you body feel better. Sometimes it's a matter of working through the first couple of days or weeks of a med, letting your body adjust. During this period you may feel worse, but then start to feel better once everything balances out. Most of us start our with very minute dosages of herbs/drugs and gradually work your way up to a therapuetic dose that your body does well with. Of course there are some meds/herbs out there that your body simply does not like not matter what. As I said, unfortunately, it's a lot of trial and error. Take everything in baby doses and explain to your doctors that your body is sensitive. Good luck and best wishes. Gena

Ramakentesh, I would be interested to know if they ever find a corrleation between methylation of the gene promoter - (turning the gene off) and autoimmune diseases, which so many of us seem to have in addition to dysautonomia. I wonder how all of this fits together? Very interesting. Keep us posted. Gena

This is such a sad and touching story. I would love to send them a card. I'll email you to get their address. Thanks for posting this. gena

Julia, You should consider seeing a doctor right away for that pain in your side, just to rule out a kidney problem, bowel obstruction, appendicitis, etc. Sounds like this pain is not a normal symtpom for you, am I right? I hope you find relief soon. You are in my thoughts and prayers. Hugs, Gena

Lately I've read a lot of posts about people concerned over their high BP and/or breathing problems. I was Christmas shopping on amazon.com and ran across this interesting device called "Resperate" to help lower BP and regulate breathing. It got pretty good reviews. I have not tried it myself, as I have problems with very low BP, not high BP. The device is pretty expensive, but, I thought I'd post the link here in case anyone is interested. http://www.amazon.com/exec/obidos/ASIN/B00...4473331-0500701 Gena

Julia, In response to your question...You can get the Coromega fish oil at most any heath food/supplement store (but not at places like Wal-Mart)...or you can get it online at many websites. I like http://www.vitacost.com or http://www.iherb.com. Vitacost sells it for less, but their shipping isn't as fast as iherb. Best wishes and I hope you start feeling better soon! Gena

Lois, Welcome back. I'm glad to know your POTS is doing better, because you are dealing with so many bigger health issues right now. I'll keep you in my thoughts and prayers that everything goes well and your body stays strong. I will look forward to seeing your posts in the future. Hugs, Gena

Julia, I agree with Momdi's advice on the fish oil and the many other healthy tips she provided. I take a fish oil made by Renew Life that's enteric coated and has peppermint oil in it...this prevents any aftertaste or fishy burps. My husband likes a fish oil called Coromega. It comes in individual packets that you squeeze in your mouth. It tastes like orange pudding. It's very good. Either way, it can really improve your cholesterol numbers. Fish oil/omega 3 fatty acids are also good for your brain, they fight inflammation, excellent for the heart and heart rhythm, and provide so many other benefits. I hate having those feelings of adrenaline surges all the time. I just went through a spell like that. Anxious all the time and worrying about everything under the sun. My heart will race uncontrollably and I always think I will certainly die one day of sudden cardiac arrest. Other days when it races, I can calmly talk myself through the episode and feel confident I will be okay. I try to stay in a positive frame of mind, but I know it's so difficult to do this when your body is going wacko! I am not one to take meds unless I have too, but sometimes in a crisis I do take Xanax, just a 1/2 of a pill and it does help take the edge off my anxiety. Klonopin can do that as well. I realize benzos can be addictive, but taking an anti-anxiety med at least for short-term use, might be something you want to talk to your doctor about. I know it's hard to tell whether the anxiety is making POTS worse or vice versa. I've given up trying to figure that one out!! Exercise helps me relax sometimes too and just seems to regulate my ANS. Can you do any floor exercises? I know how alone you feel when your family doesn't understand. But we're here for you so feel free to vent anytime. Hugs and well wishes your way! Gena

Ernie, I know this is extremely frightening to you. We are all supporting you in our thoughts and prayers. Do you have anything to help you sleep at night so that your body can relax and feel rested? There are nights when I can feel my adrenaline running high and I wake up scared out of my mind throughout the night. Do you think these upcoming tests will be valuable and reveal anything you don't already know? If not, then you may want to consider not doing them. I know we've all been subjected to tests and research in hopes of finding an answer or a specific treatment. I pray that if you get these tests, that they will be worthwhile for you and the doctors. You may want to have a discussion with your doctor about what could happen to you if you have an episode during the test and find out what he/she thinks is the best course of action. I think you have to weigh your anxiety and quality of life against what the tests can do for you in the short term or long term. I hate to see you worry about the tests and make yourself even more stressed. Thanks for sharing and unloading this burden. We are all here for you Ernie. Hugs, Gena

I get some many kinds of headaches, I really don't know where one begins and the other ends. I get those shooting pains often and it is very scary. I always think I'm going to have a stroke when it happens. Most of my pain always occurs on my left side, although I do get a little on my right sometimes. I'm glad to learn about the icepick headaches. Hopefully that is all that these are.

Jacquie, I am so very sorry to hear you're having such a rough go of it. I will keep you in my prayers and hope that you get assistance from someone soon. I wish I could do something for you. I will send you cyber hugs and let you know that we're always here if you need support. From the posts I've read on here before, getting disability can be so tough, but it seems like it usually pays off if you are diligent and stay the course. I think they make it tough so that people will eventually just give up. Do you have any attorney friends that might help you with your case? Try to hang in there girl. I hope an angel comes along to help you very soon. Hugs, Gena