babettess

Thanks everyone, I will be continuing to research on how and where to get a service dog and will post what I find out on here so everyone can see. I know of someone here locally who has POTS/NCS who has a service dog. I am going to try to meet with her this week so I will pass on whatever information I get from her. I agree with you Suzy- I think I will be a little more comfortable being alone if I have a dog to keep a eye on me. I am so anxious to find out more about the process. I will keep everyone updated. Babette

Nauthiz, I have very weird feelings too. I also get the weird breathing feeling. It is a terrible feeling. Have you looked up vocal cord dysfunction? It makes you feel like you can't get enough air in. There are breathing exercises that help with it. One of the worst weird feelings for me is when I feel like the front of my throat is being squeezed and I have trouble swallowing. The muscles in the front and back of my neck get so tight that I feel like they are going to close off my airway. My voice gets weak during these times and I have more trouble swallowing. This is the one symptom I would most like to get rid of. So far no doctor can tell me why this happens or has been able to offer any relief. We POTSy people sure can get some strange feelings. I am keeping a record of all of my symptoms no matter how wierd and unusual. I hope when I show the list to my new neurologist that it will help him figure out a course of treatment for me. Do you keep track of your symptoms so you can share them with your doctor? I have to keep track of them because I will forget them when I get to the drs. office. Brain fog!!! Do you know what kind of POTS you have? I have never been told what type I have, but you and I seem to have similar symptoms. Hang in there. I wish I could be more help to you. All I can offer is to let you know that you are not alone in this. **My 17 year old daughter also has the breathing issues. Babette

Hi Everyone, Does anyone here have a service dog? I would like to hear the pros/cons of having one and also get information on where I can get one. Thanks, Babette

I know how you feel. Both my 67 year old father and my 64 year old mother are healthier and more able to do things than I am. My mom is a massage therapist and gives on average 20 one hour massages a week! I can't even drive to her house to get a massage let alone give one. My dad just worked 12 hours a day for 64 days straight and still felt good enough to go fishing 47 of those days. It is difficult to look around and see what other people are doing that we would like to be doing. I'm still trying to come to grips with my limitations myself. I have two friends and my husband who get the real truth about how I'm feeling. When everybody else asks how I'm feeling I just say,"Hanging in there!" and let it go at that. So hang in there!! You are definately not alone! Babette

My husband was in the hospital from Friday afternoon til Monday evening for possible heart problems. (Heart turned out to be fine.) I stayed with him the whole time except for about 3 hours to get a shower. Well he couldn't stand the hospital bed so he slept in a recliner and I slept in the bed. It was undoubtably the most comfortable bed on which I have ever slept. It was filled with air and it pumped up under you to prevent pressure points. I spent almost all of the time I was there lying on that wonderful, sensational, too good to be true bed. I only had to walk about 6 feet to be in the restroom. So I thought I was on vacation!! I didn't have to try to be well enough to cook, work, clean or do anything but be there for him. I actually felt pretty good even thought I was under so much stress. And I had this fabulous bed!!! Well the day he was released I thought I would die just trying to walk to the van. Apparently I got somewhat deconditioned from just 4 days of inactivity. Up until this period of inactivity I have been trying to be as physically active as possible. I just plain "forgot" that I should have tried to walk up and down the hall at the hospital or around the room or something. Now I feel like I'm starting an intense exercise program just by walking to the kitchen. I bet I won't go on a "vacation" like that again. How is it that our bodies can be so affected by the simplest things?? And does anybody know where I can get a bed that is filled with air and pumps up and down on it's own to prevent pressure points???? Thanks, Babette

Hugs, thoughts and prayers are headed your way, Morgan! Babette

Hi Carolyn, I made a big mistake in what I told you earlier.....my daughter took Adderall, NOT Strattera. Sorry about that, the brain fog sets in at times. Good thing I keep good paper records to look at. I am being seen in Genetics at West Virginia University, which is a nearby teaching hospital. I decided to go there first since it is close to me and I have traveled so much trying to get the POTS diagnosis. I am the one being seen even though my daughter is more hypermobile than I am. All the doctors who I have told that I am being evaluated to confirm EDS say they think I have it. I guess the geneticist will just confirm it. I think we have the hypermobile kind and hope the geneticist agrees. I am also helped by beta blockers. I am still learning about POTS and really don't know much yet about EDS. I did finally find a neurologist who seems to know about POTS. He has confirmed that I have POTS through his own testing and when I meet with him next we will discuss options to help me feel better. I am seeing a Physical Therapist who knows about EDS so as soon as I get the confirmation, he will start working with me on the EDS issues. He is actually the first person to tell me about the possibility that I could have EDS. So I guess the POTS is secondary to the EDS!?!?! I hope you and your son are successful in finding a medication that will help him be as successful as possible in school. My daughter also has ADD without hyperactivity. She's had some teachers who were understanding and some who weren't. Overall she was successful; despite the ADD, POTS and EDS. We are a little concerned about how she will do in college, though. A few things to consider are - Could the POTS be causing the attention problems?? Can he focus if he is lying down?? Does his attention level change according to his POTS symptoms?? I think with POTS, lack of oxygen to the brain could mimic ADD. Just a thought........ Babette

I don't get the headaches that often, but when I do they are almost always caused by a muscle in my neck that is acting up. I do have throat issues like you do. I was going to respond to an earlier post you had written, but I will just tell you that on this post. My throat tightness is one of the worst symptoms that I have. Sometimes it feels like I'm being choked by somebody and I have trouble breathing when this happens. I have several sore spots under my chin that hurt when I push on them. I definately think these sore spots are what's causing the pain/tightness. I also have trouble swallowing liquids. I have been to a ENT & neuro and they can't tell me what is going on even after multiple tests. Have you seen any doctors for your throat issues? If you would like you can PM me for more info. Also you can look at some of my old posts about my throat issues to see if they are similar to yours. Just wondering-do your headaches go away after you lie down?? Hang in there! Babette

I live in a very rural area and know of 8 people with a form of dysautonomia within a 80 mile radius of each other. This number includes my daughter and myself, another woman and her daughter with POTS, a man with POTS, a man with PAF, a young woman with NCS and a 12 year old with POTS. I have met the men, but not the other women yet. I am hoping to meet them all eventually. (Interestingly, I met the man with PAF at my neurologist's office which is about 3 1/2 hours away. He was there the same day as me and upon talking we found out we only live about 25 minutes apart. He travels the 3 1/2 hours every 3 months to see this doctor. ) A friend of mine who works at our local hospital was talking with a nurse practitioner about me and how many other people in the area have a form of dysautonomia. The NP said that the CDC should be looking into our cases since the number is so high in our area compared to the total number of people in the area. I guess it really is a small world. Babette

My 17 year old daughter with POTS also has ADD. Before she officially got the POTS diagnosis, she was on Strattera. She seemed to tolerate it ok. She did not take the Straterra her senior year of high school as her schedule wasn't that demanding. Now that she will be starting college, she wants to go back on it. I'm concerned about how she will handle it now, but since she tolerated it in the past, I guess she will try it again. Of course we have to check with her doctor first, though. We are also seeing a geneticist in August to confirm EDS. Seems you and I have a little in common! Do you also have POTS and EDS yourself? I have POTS and will be seen by the geneticist to confirm the EDS too. Good luck finding something that will work on the ADD and not affect the POTS. Sorry I don't have more advice for you. Just a last minute thought though, my neurologist writes prescriptions for his college students that have POTS so that they can take their tests while lying down!! Make sure your son's school is aware of his conditions as they should be able to make some accomodations to help both the POTS and ADD. Babette

I have the same feelings. Very Strange!!! I think it must be what it feels like to be weightless. I always say I wish someone would stop the world and put it back on it's axis. Let us know if anyone figures out what this is and what we can all do about it. Babette

I just PM'd you with info on my doctor. Hope you find a great dr. that you are pleased with. Babette

Thanks Futurehope, I just PM'd you and then saw you had written to me. Yep, it's Dr. Khurana. I am still so impressed with him. He spent one hour yesterday just reviewing my records and tests. He says that my BP shouldn't drop if I have POTS. I just always thought low BP was part of POTS. This will be my third TTT. He wants to continuously monitor my BP to see if it's dropping. The other tests didn't monitor it continuously, just every few minutes. I'm also having a Heart Rate Variability test again and a Valsavagal Response test (or something like that). Thanks for your input. You are right he did just say I "could" not I "did". I am usually pretty good at looking at things optimistically. I think I'm just overwhelmed right now. Hope your appt goes well tomorrow. Babette

I know what you mean!!! I have been to the local university hospital where they did just a TTT and an EMG/Nerve Conduction Study and said you have POTS and sent me on my way. (Didn't feel too comfortable with their knowledge.) So then I went to CC and they did a multitude of tests and gave me about 20 minutes of the drs. time and said you have Early POTS and Progressive Diastolic Orthostatic Hypotension and sent me on my way. (Didn't feel like they gave me enough time.) So now I just went to a neurologist who knows about autonomic dysfunction and he says that he needs to do more tests because CC's tests don't give him all the info he needs. Well he spent 1 hour 50 minutes with me the first visit, then on my second visit (which was just yesterday) he spent one hour just looking over my records and tests. So I have been to one of the biggest centers in the US and was very dissatified with them and then I go to a neuro who has one employee in his office and I feel like he actually cares and knows what he's talking about. I feel so much more comfortable with this new dr. At least he gives me his time.... But yet its so hard to know who's actually right. For me, at this point I'm going to go back to the neuro that gives me his time. At least I know he will have all of my information and I will be a name to him, not a number. That counts for alot with me. Good luck with your decisions. And I would keep researching!!! It's sad that we all have to be our advocates. Babette

Thanks everybody, I just read a little more about PAF and MSA and I think he must be wanting to rule them out because of some of my other problems such as the swallowing difficulty which can happen with MSA. My BP is usually always low and I have never really seen it high, but I have been on a beta blocker for the last 23+ years and I know they can lower your BP. I have checked my BP at all times laying down and during the night when I wake up and it's never been high. The testing will be in Baltimore so I will be traveling 4 hours. I'm going to go down tomorrow as I know after being off my beta blocker for so long I will not be up to traveling on Friday morning. I guess I'm just going to have to wait until Friday for more answers. I just hope he can tell me something before I leave the hospital. I am not a very patient patient when it comes to things like this. Thanks everybody for trying to help me feel better about this. Babette

Thanks Suzy! Everything I have read says that your BP can drop so I'm just not sure what he's looking for. I'm just not very patient, I guess. Babette

Hi Suzy, Yep, I feel like that every now and then. My arms and legs feel like they weigh a ton each and it is hard just to lift them. I really do think that this has gotten a little better since I started taking Vitamin D, though. The constant chest pain I had has been gone since about 3 weeks after starting the supplement. Have you ever been tested for Fibromyalgia? I have it and I always thought that it was what caused me to feel that way. Can you tolerate a small heating pad on the worst areas? Heat does help my pain. I use a small heating pad that I made myself that I heat in the microwave. Mine is filled with shelled corn. You can make a quick one by putting plain rice in a tube sock and tieing a knot in the end. Then just put it in the microwave and start out with about thiry seconds time and increase it slowly until the rice is hot. I'm not bothered so much by this heat because it covers such a small area. Hang in there. I know you are having a rough time now. Take care of yourself. You're still in my thoughts and prayers, and I'm sure a lot of other peoples, too. Babette

Hi everyone, I just saw my new POTS dr. yesterday for the 2nd time. He looked over every test I have had done in the last year (which was a lot of tests). He wants to repeat my TTT as he said if I just have just POTS that my BP should not have dropped and it did on my last two TTT. Well in March whenI had a bunch of tests at CC, they said I had Early POTS with Diastolic Progressive Orthostatic Hypotension by the TTT results. They also only suggested a skin biopsy to see if I have small fiber neuropothy-even though my QSART was normal. My new doctor says something more could be going on if my BP drops during the TTT. I tried to get him to tell me what else he was thinking I could have and he just said another form of dysautonomic disorder. I specifically asked if it could be NMH but he said, "We just need to get the tests done first." I really like this doctor and he seems to know what he is doing. He even knows about MCAD and is having me repeat my histamine and methylhistamine levels again. Shouldn't CC have told me if they thought something else was going on?? So what other form of dyautonomia could he be thinking that I have? The only forms I know of are POTS, NMH, PAF and MSA. I don't have high blood pressure when I lay down, so I thought that ruled out MSA. Does your HR go way up and your BP drop during a TTT if you have PAF? I thought that it was common for BP to drop with POTS??? Any help will be appreciated. I'm a little scared cause the doctor called me today and scheduled the TTT for this FRIDAY. I have to be off my beta-blocker from now until the test so I know it's going to be a LLLOOOONNNNGGG wait til Friday. I don't do well without my betablocker. Thanks, Babette

Daughter #3 (17 years old) has to have another surgery. Surgery #7 to be exact. Anyway since she has now been diagnosed with POTS and probable EDS, I just thought I should ask everyone on here if we need to be aware of any extra risks. This surgery will be an ulner nerve transposition. This is where the dr. tucks the ulner nerve (which is in the elbow) under the muscle of the forearm so the nerve is covered. She can probably have it done without general anesthesia. She has not had any problems during her last two surgeries which required general anesthesia. She had an umbilical hernia repaired in Mar 08, but did have problems with healing of the incision. So in Oct 08, the surgeon went in and repaired the incision( took out scar tissue, etc.). This particular surgeon is amazingly intelligent and actually knows about POTS. She helped get my daughter diagnosed. She also is the first doctor who suspected a connective tissue disorder because of the difficulty with the wound healing. Her partner will be doing this next surgery so I feel very confident that my daughter will be in good hands. The new surgeon is going to call a collegue and see if she needs to do anything differently because of the probable EDS. We don't see genetics until August to get the EDS diagnosis confirmed. So does anybody have any suggestions/comments/things to be aware of that I should know about before she gets this surgery done? I don't know much about EDS yet and since this surgery will require a lot of connective tissue work I thought I should get some opinions from those who do know about EDS and POTS. Thanks for any input! Babette

I get a red, raised rash about the size of a dime on one shoulder when I've been in the sun too long. Very weird, I know!!! I have a very fair complection, burn easily and get sun poisoning easily. I use this weird rash as my indicator that it's time to get out of the sun as it comes before I burn. Two of my three daughters and I are all low in Vitamin D. (Third daughter hasn't been tested yet.) So far I'm the only one with the weird sun indicator rash, though. Babette

I'm in Maggie. You will be getting my address soon. What a great idea! Babette

Hi Suzy, I too have trouble breathing at times. I struggle when I try to exert myself and also at times for no reason. When I haven't exerted myself, I have found that what helps me the most is to make sure I am breathing with my diaprahm (or belly) and not my neck and chest muscles. I make sure my belly is rising on inhalation and lowering on exhalation. I seem to find myself breathing too fast when this is happening. To get my breathing back to normal I try this "exercise". I count to five slowly as I breathe in to make sure I'm not breathing too fast, then I hold my breath for 5 counts and then breathe back out while counting to five, then don't inhale for 5 counts and then start all over. My physical therapist notice that I was breathing with my neck and chest muscles and has been working with me to make sure I am breathing basically with my belly. I know this sounds crazy but it has helped me. I don't know if it would help you or not but hey-it doesn't involve medication so that's a real GOOD thing!! Oh and I don't get lightheaded when I do this even though I thought I would. I also have "spells" where I feel like my air is cut off or that someone is choking me. I can take deep breaths during these spells but they are still scary. I'm hoping when I see the neurologist on Tuesday that he can give me an idea of what is happening when these spells hit. I will let you know if I find out anything interesting. Hang in there and remember to "Just breathe". ( That's what Faith Hill says anyway. But I know it's easier said than done. I'm struggling today myself.) Babette

Hi Erika, I have 3 girls and daughter #2 will be a college cheerleader this fall and has cheered since elementary school. (YAY GIRLS!!!!!!) I know how you feel.....that 8 mile drive can feel like a 100 miles when it's hot. It doesn't usually get 102 degrees here in the mountains of Maryland but I can barely tolerate 80 degrees. I am thinking about getting a cooling vest so I can enjoy the outside again. Have you looked into one of them? Best wishes for a cooler tomorrow... Babette Daughter #3 cooked dinner tonight at my house.

Ruekat, When my doctor decreases meds that need tapered, he always has me get to the lowest dose I can cut it into and then I start taking it every other day for a week, then every 3 days for a week or two, then every 4 days for a week or two, and then every 5 days for a week or two. He always takes me off meds very slowly. I am extremely med sensitive. I'm not sure what your doctor recommended, but perhaps you could ask him/her for a recommendation on a slower tapering schedule. Sorry I didn't get back to you sooner. Did you try the Clonidine yet?? Babette

I take 50,000 IU's weekly and have not had any problems with it. I actually have had less muscle pain since my levels have went up a little. It takes 50,000 IU's weekly to get my level up at all. I have tried going to 50,000 IU's monthly but my level drops drastically on that dose. So it looks like I will be on the larger dose indefinately. The kind I take comes in a green football shaped capsule with a gel filling. I cut the capsule open and squeeze the gel out into a small glass of orange juice. I have trouble swallowing pills so thats why I do it this way. I hope you are able to tolerate the supplement and that it helps you feel better. Babette