briarrose

Dawn Nope I've never been tested for mitochondrial disorder or Lyme disease. In fact since I've never been diagnosed and it's never been hinted to me, I really don't know what mitochondrial disorder is. So I will do some reading today on mitochondrial disorder when I get to work. I do have a lot of migraines, they started about 6 years ago or so. I have periods where I can't think, can't talk - slurred speech or I tangle my words, someone can say something to me and I can't remember past 10 seconds what they said, blurred vision, tingling in my extremities, etc. But I just assumed that ever weird symptom like this is POTS. Someone told me that POTS is often accompanied by other illnesses and it's just a matter of time before they reveal themselves. I don't know if this is true or not. Thanks Ethansmom, Merrill and Dawn for your support and your recent posts Thanks for one more possibility to explore. I'm glad that I'm seeing Dr. Grubb in August again. I'm starting to write down questions, although I try to weed them out and make them brief. I feel horrible for him and grateful. I'm so glad that he's there for us but I wish he had a team of people to help him. Steph

I know I was a little bit hot (angry) when I started this but I really do think that it would be a good idea for us to let our docs know what overall symptoms we experience. And I think it adds validity when we stand in numbers. I know this isn't scientific but maybe it will give them more ideas when they do future studies. Just a quick update. One of the nurses from work is going to help me get this going. Please give me at least a week. I'm in my 4 day-12 hour stretch at work and this is the last week at school for the kids, so it's a little exhausting and hectic. thx steph

Tearose I hope your move goes well and you enjoy your new home. I'm sure it will be very beneficial to your health. Btw, I take neurontin and it's the only medication that has taken care of my joint pain. I would like to call Dr. Forman and see what he has to say about all of this. The more information the better. I had a brain MRI last week and I'm still not completely sure what to make of it. I don't have MS. They said they saw spots in my brain that are like having mini strokes but that it was also what they would expect from someone that has episodes of hypotension. Hmmm........ I'm a little confused today about the whole thing. I was kind of suprised about that being their finding so I wasn't prepared for what questions I wanted to ask.

I'm going to try to formulate something. I need a few days to get it together and go from there. I think if you guys could all think of symptoms you've had since this illness began, that would be great. I know that each time I got really sick. I would keep a journal on my computer. I just need to get all of the pages together. I'll keep you guys posted, just be patient and I'm open to any ideas. steph

Sorry still half asleep so forgive me please. But I got to thinking and I wanted to put it down before it slipped away. A few months ago most people posted their POTS stories. I can't remember who took them all down but is that person or someone else willing to take on a huge project? I will definitely help, but not well enough to take it all on. After my post yesterday I got to thinking that WE POTS patients should help the doctors and researchers out. WE should compile our own lists of symptoms that WE suffer from. And WE can put down the statistical format of how many people replied and how many had what symptoms. A questionnaire that we can test on ourselves. Once we get it compiled then we can pass it out and do a group edit by adding things we remember that we've endured over the course of this horrible illness. End goal is by making our own survey and giving it back to them! That way they can see that it's a little more common and maybe a little light will click on inside to help them understand us better. I personally think this is important by helping us communicate to the medical world what's really going on. It's not just blood pressure, heart rate, brain fog, etc. I have personally told Dr. Grubb, my primary care doc, cardiologist, rheumatologist, endocrinologist, etc that I suffer from multiple symptoms at one time or another. Even Dr. Grubb has said he hasn't heard of a few of those complaints. I think he hasn't heard them because his time is so limited and we only say the immediate worst. But it would be beneficial to enlighten the medical community. Let?s give them the whole puzzle to us rather than a few pieces. Please help! It's for all of us and the future patients of dysautonomia.

Melanie Many POTS patients are very sensitive to medications. Everyone reacts differently to medication. I took 3 beta blockers before I found one that worked well for me. The first one made me weak and sleep 24/7. The second one dropped my heart rate into the low 40's and make me weak. The third one worked for about a year for me. If your beta blocker is making you feel worse, contact your doc and tell him so. Ask him what you should do and if he would consider trying a different beta blocker on you. steph

Thanks everyone! Your replies give me peace of mind. I contacted one of the leading researchers in the country early this morning and they hadn't heard of all those being associated with POTS. But I think there is a lot they don't know yet and I guess it's possible. I'm glad to hear that I'm not alone and that is just a huge relief. I didn't post all my symptoms, just the ones I thought were more neurological. LOL I didn't want to put anyone to sleep Thank you everyone for your support and replies.

Merrill I should know test results friday. I would like to point my finger at the meds, there is only one problem. Most of these meds are from since I've started seeing Grubb and that was after the first onset of most of these symptoms. The only meds I was on previously to symptoms were Synthroid, Atenolol and Pepcid. I would like to know that it's POTS and not anything else. I know there is no way possible to have an answer on that unless there was one medical professional interested in all the symptoms that we experience and then comparing if more than one person is having them. Steph

Valiant Effort - it helps to know that others have weird neurological symptoms too. Merrill, thanks for your reply. I got an MRI of the brain yesterday. My doctor was skeptical when he ordered it. I was hoping that it wasn't MS but know of others on this website who have had MS type symptoms. I asked about medications too thinking that it might be a side effect from one of them. I take the following: Epogen injections - once a week IV Iron - ( was once a week, currently once a month) Daily Betatoxol (beta blocker) Neurontin Pepcid Synthroid Zoloft Florinef Ferrex PRN Imitrex Zofran Quinine Think that's all of them I had the first episode with my eyes last summer. The last 2-3 months I have had several more episodes and additional symptoms. Thanks for your input Steph

April Congratulations! I'm very happy and excited for you. Your family will be here to support you through your next 9 months and beyond Steph

I?m very interested in the first column of symptoms. I?ve recently had more neurological problems with my vision and muscles. I?m wondering if anyone else has experienced this associated with POTS/dysautonomia? I think that some of these symptoms are indicative of MS. Has anyone else experienced any of these symptoms? Vertical nystagmus (where your eyes move up and down rapidly) Vision flickering (kind of like if you look at the shadow of a burning candle on a wall.) Involuntary head nodding Blurred vision Excessive tearing Spasms around your eyes Vertigo Light-headedness Headaches/migraines Tremors Muscle spasms everywhere Muscle cramping Bone aching Joint pain Sensation of a hot pin being inserted in your muscles Numbness/tingling of your extremities/extremities falling asleep/prickly feeling Goosebumps leave an uncomfortable sensation Off balance Confusion or brain fog Complete exhaustion or fatigue Loss of smell Tinnitis (ringing or muffled sound) Tongue gets numb or tingly (especially if your hungry)

Sue I know your having a really tough time right now. I can completely 100% relate to you. I know everyone on this board can relate to how bad we feel. I'm sorry, going to do a misery loves company post The last few weeks have been worse than usual. I think because I was getting IV iron every week and then they reduced it to once a month, I can notice the difference. The brain fog and fatigue are back, seems like worse than before. They also took me off my beta blocker last week, by the 3rd day I couldn't stand it anymore. As much as I hate my beta blocker because it makes my already low blood pressure worse, I can't stand not being on it because of the tachycardia (can you say caught between a rock and a hard place!) I went to the doctor last week because my symptoms were getting unmanageable for me. I don't think he knows what to do with me anymore. He doesn't really want to run anymore tests of any kind but he broke down and is sending me for an MRI to rule out MS. I'm having a lot of problems with my vision bouncing vertically. He sent me to an ophtamologist but she said my eyes looked great and that it was some kind of neurological problem or MS. I told him I couldn't stand the fatigue and brain fog. He suggested adderall or ritalin, 2 drugs I don't want to take. Give me more coffee over amphetamines, please. I suggested increasing the iron again. I get in a (excuse the phrase) pissy mood. I reach a point of pure frustration about my symptoms and the lack of knowledge in our medical community. I get angry that there isn't more research or specialists that can answer my/ours questions and help me/ours with my symptoms. And I really get pissed when I work in the medical profession and they can't begin to understand the **** we endure. I think, that they think, I'm faking or something lame. I've been trying to go see the movie Troy since it came out with a friend. He came over thursday and I was just too exhausted to get out of bed. He came back friday and we went, but I was so fatigued that it nearly killed me to sit there and watch that movie. I wanted to get up and walk out so bad. By the time he brought me home, I was crying from pure exhaustion. I couldn't even think well enough to tell him what was completely wrong with me, I didn't know myself. It was exhausting just laying on the bed. Everytime I stood up my heart rate would hit 130. Everytime I sat down my blood pressure would drop below 100. It was in the 80/60 range most of last week. Anyway, came home from the movie, took my beta blocker and went to bed. I got up Sunday and felt better so my friend took me for a drive. We went to the Painted Hills in Central Oregon. It felt so good to get out of this house and breathe fresh air. I got tired a couple of times and crawled in back of the car and slept. But it was so worth the trip. There was one place where we stopped and got out of the car. It was a bluff that over looked a valley. I found a large rock in some tall golden grass off the side of the road and sat on it. There were loud cheerful crickets all around me. There were birds that were singing beautifully (I so wanted to take them home with me.) I felt the wind and the warm sunrays on my face. I watched the beautiful grass blow like a golden wave. It was the most peaceful, serene time. I didn't want to leave there. By the time we got home I was back to the extreme exhaustion. I crawled into bed and had the best sleep that I've had in months. It might have been tiring, but what a great day that was for me. I'll remember that Sunday drive and how wonderfully peaceful it was for a long time. I'm sorry to have made this so long. I know how your feeling. We push ourselves to get by every day. We need to push ourselves to go out and enjoy life a little bit, I know that it's easier to lay in bed but it's so incredible to see what were missing. Feel better Sue

Nina You don't need luck, your a Pro! So I hope you have time to enjoy some nice weather, your favorite restraunt and just some plan ole R & R after your presentation. steph

Hey Nina Absolutely beautiful flowers! I wish I had your green thumb. It would be nice to be around such a lovely flower garden as yours. You should think about your own greenhouse. steph

I tried Celexa for a very short time but it made my already bad headaches much worse. They put me on Zoloft, 25 mg. I experienced the same kinds of headaches. They halfed the dosage to 12.5 mg and I do well with that. When I took Atenolol for the tachycardia, I started at 12.5 mg and eventually cut that dosage to 6.25. I eventually had to switch to Betatexol. I recommend finding a doctor that knows about POTS so you can get the best possible care and treatment. I travel over 2,000 miles to see a specialist. I hope you had time to read the article at Potsweb. Towards the bottom of that article it talks about medications. There are weblinks too after the article that are very helpful. Please read a mind experiment for doctors! steph

Beala I?m sorry that you have to deal with this. Thank goodness you have a diagnosis. I?m not sure what symptoms your son has or what information you have already found. Based on my own experience I can say the following: My first 2 beta-blockers made my symptoms worse. It was my 3rd beta-blocker that was great for nearly a year. I?m on my 4th or 5th beta-blocker now. It?s trial in error with meds. It?s always good to start at a low dosage as many of us are medication sensitive or intolerant. Have you tried an SSRI uptake inhibitor? Is your son anemic? That is very important to check. Make sure he gets plenty of fluids and sodium. Plenty of rest, being tired brings on a domino effect of symptoms including making the brain fog worse. I can recommend a few good articles to read and I really enjoyed Dr. Grubb, he has given me back some quality of life. http://home.att.net/~potsweb/POTS.html http://www.dynakids.org/othersites.jsp

Coughing can increase blood pressure and restore perfusion to the brain. Coughing is an internal CPR. In many instances, this maneuver alone will bring a patient out of presyncope with restoration of color, heart rate, and blood pressure.

Nina Congratulations! It's such hard work but what a great sense of accomplishment when you get through it. Btw, you made me hungry talking about your wonderful plants so I'm heading for the kitchen for chow. steph

It's true about the EBV. They say that 95% of adults have been infected. I think they can do a mono test, IGG and IGM. I'm sorry I don't have much else to offer. Hang in there and think about applying for a research study. At least you'll get free medical testing. steph

I'm wearing one right now and have had them a few times in the past. The event monitor is different than the holter. The holter is a continous recording of your heart. The event monitor is smaller and you push a button when you notice a palpitation, skip, chest pain, etc. What was your main symptom or problem when the doctor told you that they were going to have you wear one? You change the electrodes everyday. So you can shower and put fresh electrodes on. The event monitor usually records 30 seconds before you pushed the button and 30 seconds after you pushed it. The monitor usually stores 3-5 events and then you call in to down load your recordings. They will walk you through it. At that time they ask you what time and date the event occured, what you were doing and the symptom that you felt, i.e. shortness of breath, palpitation, etc. They will give you a journal usually to keep track of the details. I hate recording around anyone because people can hear it. I usually duck out of a public area quickly. Good luck steph

Gwen The December of 2002 I had nearly exactly what you?re describing. I was in pain for over a month with that flare. I missed work and finally was begging for narcotics the pain was so bad. I didn't even want to walk to the bathroom. The pain could wake me out of a sound sleep. I would have shooting pain through every joint, muscle and bone in my body at times. I told my doctor it was like having railroad spikes driven through my knees and nails driven into my elbows. Sometimes I would even cry out in pain when it would shoot through my body. The rheumatologist never figured it out. This is completely different from my normal joint pain of course, which is relieved with Neurontin. The muscle cramping in my calves, I think is sometimes caused by low potassium (eat a banana!) I have also tried Quinine with some relief for the muscle aches (you can buy tonic water and it has quinine in it.) The knots in my back are usually relieved with massage, but have been so bad they can cause me to have migraines for days. I?m sure I?m forgetting something, but am very tired right now. steph

Here's a couple of MVPS websites, maybe you haven't read yet. http://www.consciouschoice.com/holisticmd/hmd093.html http://www.mitralvalveprolapse.com/ http://www.mvpsupport.com/ http://www.emedicine.com/emerg/topic316.htm

Hey Gayla I would be upset too. Nobody knows what it's like to be in our shoes until they've actually walked in them. Maybe most of your family didn't know what was going on with him either. Maybe you should do some back door questioning. Good luck!

Shanna Welcome! I'm glad you found us. I recommend that you go back and read previous posts for information. Here are some websites for you to check out: Of course you found this one http://www.dynakids.org/index.jsp http://home.att.net/~potsweb/POTS.html http://www.ndrf.org/aboutndr.htm I don't have my instant messanger on much and days that I'm working I don't have it on at all, I work, read my email, do a couple of posts and sleep alot. My instant messanger handle is Stsukosd@aol.com I would be happy to talk to you. Steph

April I'm behind you 110%. Isn't it funny how in the health care profession you give to others. Your asked to be understanding and caring. When you get sick the doctor tells you to take time off of work. And it's this same loving environment that wants to get rid of you at the first chance they get. The group of people that should understand better than anyone else and be setting the example of better conduct. Does this make sense?