potsgirl

And I agree with Janie and KCMom. I've had heart issues for the last 6 years, a year before I was diagnosed with POTS. Unless there's a scientific study out there somewhere?

Congratulations, Jared! You were really lucky. For others out there wondering about the disability process, if you think you might eventually need it, apply as soon as possible. I also went to the mental exam they requested, and was turned down twice (I hear a lot of people are), got a great disability lawyer and was approved immediately by the judge at my court hearing. It was hard to wait for help with expenses - like food - but the backpay was certainly nice. Yes, they have to pay you what you would have gotten per month for as many months as you've waited since you applied (I think it was 'applied', don't quote me here). I received 9 months of backpay, thank God.

Where did you get these charts? I don't seem to fit any of them either...My BP drops by 30-40 points and my HR goes up 40-60 points when I do the tilt table test. I have dysautonomia, and orthostatic hypotension. My specialist at Mayo told me that their version of POTS is where BP stays about the same, but the HR goes up by at least 30 points. I'm also a fainter. I guess I'd be between A and B.

I think going to a counselor has helped me a lot. Some of them deal with people who have chronic illnesses and are depressed/anxious/angry. I haven't been mad at my boyfriend for leaving me behind, instead I encourage him to get out with his friends once a week or so - that's all he'll do. I don't get angry when he wants to go out and night and I can't, but sometimes I get bummed that I can't go out to dinner or shows anymore. My main problem is anxiety, and I take an SSRI for that. Need to get back to my counselor, too. I see both a psychologist and a psychiatrist for my drug control. Good luck dealing with your anger. I'm sure you'll find the right path to overcome it!

Hey Victoria~ What pain meds were you on and why are they taking you off? I've been on Lyrica, but think I'm going to try Gabapentin because it's much cheaper. I also have purchased ALA, as my neurologist at Mayo recommended it for my SFN along with my Lyrica. He told me to start off at 150-300 mg a day. I'm seeing him in another 6 weeks, so I'm sure we'll talk about my pain meds more then. One of the basic tenets of treating SFN is to control the pain! What gives? I know how painful it can be, and would hate to have you dealing with that along with everything else. Cheers and best wishes, Jana

I had my gallbladder removed last year, and it took me a good 6 months until all of the symptoms went away. My doctor said that for some people, it's a year or more until everything is back to normal. I was scared to eat much of anything, so I ate the same 'safe' diet every day for months. I would think you should be over the worst of it, and if you're having too many problems, at least you can discuss your problems at your doctor's visit next week. Good luck, and let us know how you're doing and what your doctor says next week.

After going back to school at the age of 38 to get my master's degree in anthropology/archaeology, I worked as the archaeologist for the Hualapai tribe in northern AZ, along the Colorado River. We had archaeological sites along the south side of the Grand Canyon, so we got to helicopter into the canyon to check on the sites, or do river trips to check on them. I hiked in the heat for hours a day, until I became sick with dilated cardiomyopathy/bradycardia/congestive heart failure. I then moved to Tucson where my boyfriend lived and was an archaeologist for Pima County (Tucson), which was mostly a desk job. After only a year in my "dream job" I had to leave for good due to my new diagnosis of POTS/OI, etc, etc. I miss my work so much! I haven't worked for about 4 years now.

Victoria, I'm the same way. Sometimes my hands and feet hurt so badly that I can't stand for very long or walk very far. Sometimes a heating pad will help my hands, and I also take Lyrica for the pain. This helps a little, and there are other pain killers out there that may enable you to do more. Alternative medicine-wise, there's Alpha Linoic Acid, but the jury is still out on that one. It certainly doesn't hurt to try, though. I've recently gotten some, and we'll see how it goes. I'll let you know! Cheers, J

Welcome Traci! It's great to have you as a new member on the forum. I know you'll get a lot of support and information from this site. If you haven't already, I would read through the info on the forum's home page. It also gives you a list of specialists that deal with dysautonomia/POTS and the symptoms/conditions that can sometimes go along with your POTS diagnosis. Chronic fatigue syndrome, fibromyalgia, small fiber neuropathy, there are many related problems that may crop up or that you may be experiencing now. A lot of us have ended up going to a POTS specialist for the most help. I've been to the Mayo Clinic in both Rochester, MN and Scottsdale, AZ. Rochester has a department that deals with people with our kind of illnesses. You said you were given "pills". What medications are you taking? Headaches and "coathanger pain" (where the pain comes down your neck and across your shoulders) is common in POTS, and some meds will make those worse, or better, depending on your and what the best treatment is for you as an individual. One thing that's sure about POTS is that it's different for everyone, so make sure you're treated according to what's best for YOU. Again, welcome to the forum, and we look forward to seeing your posts and exchanging ideas and support. Usually they'll always be someone who has experienced something similar to what you have or are going through, which is so nice to know you're not alone. We're sorry that you're suffering from POTS and vasovagal syncope, but glad that you're enriching our community! Cheers, Jana

Small fiber neuropathy usually begins in your feet. You can have pain, "hot feet", pins and needles, and it can be very hard to walk due to the severity of the pain sometimes. I had the hot feet and then pain start out of nowhere about 6 months ago. Then it started in on my hands, where sometimes it feels like a truck has run over one or both hands it hurts so badly. I was tested for small fiber neuropathy and it was positive. I'm still working on a good pain killer regimen, but am working with Lyrica so far. It hasn't done much yet, but my doctor at Mayo wants me at 450 mg/day, and I'm only at 150 mg/day. Tried 200, but got very dizzy and off-balance. Will try again after we move to our new place. I would definitely look at small fiber neuropathy as an option, although a lot of us also suffer from chronic fatigue syndrome and fibromyalgia. Good luck, and let us know what you find out!

I would think it would be a really good idea for you to get a repeat MRI. Especially if you have the films/report from your last one. Take a buddy with you and go!

What dose are you on? Are you also taking Florinef?

Lyn, Do you have any symptoms when you go from lying to standing and your HR increases by <30? What does your BP do? There are doctors who don't think there's a problem unless you're symptomatic. I also have orthostatic hypotension, but I'm very symptomatic. My temp also hovers around 96.5, but I don't have the extreme reactions you suffer from. Isn't there anything your doctor can do? Perhaps an endocrinologist or a POTS specialist? If your heart rate is going into the 40s, and it sounds like you're quite symptomatic with this, you may want to ask your cardiologist about wearing a Holter Monitor for 24 hours or a couple of days. You would want to check for bradycardia. My heart rate went into the 30s and 40s when I first got sick with heart issues, and my cardio recommended a pacer. It's been very helpful. Take care, Jana

I couldn't tolerate either Florinef or Midodrine, so it may be that Midodrine just might not be the right medication for you. It gave me horrible headaches, too, so after giving it a week, I talked to my doctor and went off of it. I wonder why your doctor wants you off Zoloft if it's helping you? I have taken Paxil for the last 10 years, and I love it, but I could never take more than 15 mg a week. I should be at 20 mg, at least, but just can't handle the side effects. Most of us are so sensitive to drugs - you may want to try the Midodrine but cut your dosage in half for awhile. Please check with your doctor before changing anything... What did your heart rate do when you stood up? I also have orthostatic hypotension, and my BP will drop from 110/75 and 60 HR (it can't go lower, I have a pacemaker for bradycardia), to when I stand, 75/60 and 130 or so. Sometimes I'll pass out when it's too much of a drop in numbers. Do you faint? Have a great weekend!

Welcome to the forum, Brynne! As others have written, and in many previous posts, this has been an issue for a lot of members at some point during their illness. My doctor gave me a prescription for a wheelchair when I was in a really low period, and I was able to acquire one through my insurance with no cost. The same was true for compression hose. Make sure you try to go through your insurance for needed medical aides first before you go out and buy one. I have used my wheelchair on occasion, and have the same feelings of trepidation and feeling like everyone was looking at me like I wasn't sick so why the handicapped placard? Why the wheelchair? It's so worth using the wheelchair, or a cane, or a walker - whatever helps you - to be able to get outside and do things once in a while. Being homebound gets old very fast, as I'm sure you're finding out. So use what you need to so you can live at the highest level that your disease lets you, and that will probably vary over time. You go, girl!

"Ischemic/ischemia" is when there is not enough blood flow to an organ or part of the body. So, your brain is not getting enough blood flow, causing little white patches of dead cells (lesions). "Demylination" means a degenerating process that may be wearing away the protective myelin sheath, which covers nerve fibers in your body. A main cause of this may be MS, although there are certain definitive criteria that your neurologist can use to determine if you actually have this disease. "Vasculitis" means inflammation of your blood vessels. "Periventricular" means white matter this is situated at the two lateral (side) ventricles of the brain. IMHO, yes, I think it could be related to your POTS, but it could also come from other sources. You need to get more information from your neurologist. Don't worry, and good luck. I have several ischemic lesions in my brain, too, and they've been labeled an "abnormal amount". So far, everything's fine.

I would definitely have someone there with you to drive you home! I could hardly walk after they did my wisdom teeth, but then I had conscious sedation when they did them. In fact, they wouldn't let me have the procedure done unless someone with there with me. I'm a dental phobe and almost always use nitrous oxide for dental work, and that makes me pretty dizzy, too. I must say I had a lot of fun with the whole wisdom teeth experience....I had two impacted on the bottom, and an extra pair of wisdom teeth on top, making a grand total of 6 w-teeth! I guess that's what makes me sooooo wise (HA!) Also, I'd make sure to have some applesauce, pudding, Jell-o around the house to eat on the day of and while you're still sore. Please let us know how it goes, and best of luck! Jana

I have orthostatic hypotension and that happens to me quite frequently, too. I've even had it happen in the doctor's office, so I'm not sure what the answer is. My presumption is that my BP is too low or it's skipping too much and the machine just "errors" out. Sometimes when I'm standing my BP can be funky, jumping from 84...76..75..72. Usually that will error it out. My doctor also thinks it's probably those two issues that can make a BP/HR machine do that. Cheers, Jana

Tinks, Have you been checked for small fiber neuropathy? The problems with you hand might indicate that... Cheers, Jana

Hi Godsgal, I definitely would see your doctor. I have not heard of this symptom yet in connection to POTS (but I'm no expert by any means), and I would go see your neurologist. I hope that you can get in soon and that it's nothing serious. Of course, a lot of neurological issues directly affect us here. I have small fiber neuropathy with pain, tingling and numbness, but that's usually in your feet and hands. God bless, Jana

Victoria, I have not had any experience with going to NIH (can I come along?), but from what I hear about Dr. Grubb, I think you may get your answers there. Would you shoot me an email or PM me and let me know who you see in Iowa? If I end up moving there, I'd like to know there's someone knowledgeable instead of driving to Rochester to Mayo Clinic all of the time. I'm guessing Iowa City? Cheers, Jana

Julie, I guess I'm too late to add that I went into shock with the iodine contrast dye they used for a CT scan, and to make sure they did the right protocol before he did the scan, and to have plenty of Benadryl on hand in case he had a reaction. I'm so happy things worked out for Mack, and that your summer should be more fun! Jana

I'm okay just having a glass of wine, although I only do this on special occasions. Once in a while I'll split a margarita wine cooler with my boyfriend. Since I usually don't drink due to my medication and the fact that I am now such a lightweight that one glass of wine is plenty, I would guess I have a drink about 5-6 times a year. I do miss my wine, though!

Hi Lyn, Welcome to the Forum! We're glad to have you, as well as sorry that you are suffering from so many symptoms. You'll find a lot of caring and supportive people here, and usually there's someone who can relate to any issues that you have questions about. Hope to see you posting frequently. Cheers, Jana

How frustrating! It's great that she's trying to raise awareness, but I cannot believe that she doesn't talk about what helped her daughters! Of course, many children who get dysautonomia grow out of it, and different drugs work on different people - especially kids to adults - it's unbelievable that her doctor told them there was nothing they could do for it until they hit 20. Errgh.