Poohbear

Everyone is different so it is certainly worth talking to your Dr about. I took atenolol for a long time but then it kinda stopped working for me. I definately had a lot more bradycardia issues on atenolol but again; we are all different. Atenolol also made me extremely tired. I've had the insomnia issue with metoprolol as well. For me, I do better on metoprolol because it is shorter acting. Atenolol is long acting. So, I take small doses of metoprolol during the day but I don't take any dose after 4pm (unless I have a huge spell of tachycadia). This works for me..I take a very small dose which is just enough to get me some relief but I don't have so much of it in my system where I'm up all night.

This may be a long shot and I don't know your age but have you had all your hormones checked? I don't know about the bloodshot eyes but dry eyes can be caused/worsened by an imbalance in hormones. Since you already have allergy and sinus trouble it could be that hormones are just another factor???

check this site out. http://www.rxlist.com/cgi/generic3/neostigminems_cp.htm I hope all goes well! I do understand your fear; it's hard not to be scared of things when you have a body that is so sensitive to things but it sounds like you are in good hands. Keep us posted!

they do make a wheelchair you can lay down in!!!

In terms of flying in planes...fears and/or anxieties do not play a role in aggravating my ANS issues. For me it is merely an issue of cabin pressure and the inability of my body to adjust quickly enough to altitude changes.

http://www.americanautonomicsociety.org/

I live in the Southeast and I don't think there are fewer cases here at all. I think it's an issue of Dr's around the country are not yet educated. My Dr has several cases and every state I've lived in in the south the cardiologists I've worked with have other patients with this. I do think there are environmental factors that may trigger attacks (Chemical sprays etc) so in some areas people may have more trouble/ aggravating factors. I find it interesting that whenever I travel to a particular town in Southern Georgia I always have a horrible flare of my POTS & NCS. It took me a while to make the connection. When I was working I had to travel all over the state and over time I realized there was a connection. My suspicion is that this particular town is known to be the sod & turf capital of the U.S. and I think they spray the farms with something. The other issue is that the Dr's in the south and southeast that I've dealt with have never heard of this site or NDRF so it's harder to get the word out that there is a website though that is changing slowly.

I was very conditioned prior to getting sick and now, nothing I've done really works. I've done at-home tilt training, exercise etc. I have good muscle tone and strength (surprisingly a lot considering all I've been through) but it has done nothing to keep me from passing out. Although, I do think if I became more deconditioned things would get worse. I believe it was the Mayo clinic that came up with the pressurized space suits for astronauts to begin with. The tilt table test was also a result of astronauts and their brief ANS struggles upon re-entry to earth. NASA has studied this and some of the testing and therapies for us came out of those studies. I would think they've already considered these issues. I've wondered before what would happen with someone with a messed up ANS system if they were to experience zero gravity totally. All I can say is I wouldn't sign up for a trip to the moon since my last airplane experience flying a short distance at a relatively low altitude nearly caused me to go into cardiac arrest!

I'm sending well wishes and positive energy your way! Hope all goes well. Keep us posted!

I'm not sure where in TX you are located. I agree that if there are no specialists in your area that a medical school might be a good option. You can also check out this site: http://www.hrsonline.org/find_heart_rhythm...ist/default.asp They may not all know about Dysautonomia but it's a better bet than just any plain ol cardiologist. Congratulations on the birth of your baby! The only other suggestion I have in case your husband does get sent off...contact a local hospital or the county service on aging and see if there are any resources in your community to assist you. If you can get hooked in with a local social worker they are often aware of community resources. I am having to hire some help even though I really can't afford it.

Sounds like you need to call the Dr. I don't really have any words of advice but I've had plenty of strange symptoms Anytime something changes or is different you've got to get it checked out. I feel for you though. Hang in there and I hope you get some positive answers and results soon.

India, I was on florinef .1 dose for 3 1/2 years and it worked well for me and then suddenly my body kinda rejected it and I had to get off of it. When it worked it worked well though. I have trouble with headaches but noticed no difference in them with the florinef. I did gain some weight and that was my most problematic symptom. I do understand where you are coming from with the weight issue. All I can say is that I'm not really overweight; I'm at the upper end of my limit for my age/height though and I think I look better when I'm about 15 pounds lighter BUT every time I lose the weight I feel worse. I actually feel better PHYSICALLY if I stay at the upper end of my "limit" (mind you I don't feel better psychologically--that's a battle). Try to give the medication a fair trial and see what happens. Would it help you if you maybe compromised and decided something like."I will try the medication knowing I may put on some weight and I'm willing to try it as long as I don't gain more than 10 pounds"...something like that? I'm wondering if you could do that if it would help you still feel in control and know that your weight won't get back to where it was. Or maybe take all your measurements and be okay with yourself as long as you don't gain inches? (Because fluid volume increase is what you need which will put on pounds on the scale but not always change your size). Just a thought. When I was on Florinef I had my potassium checked about every three months and I did have to take potassium pills because I was loosing too much potassium. I started out taking K-Dur. Potassium can be really rough on your digestive tract if you have any stomach or digestive problems. Rachel, it's interesting you mention Klor-Con. That is the ONLY potassium pill I've been able to take the past six months. I take 8 MEQ at a time and some days that's all I can manage. I have to eat a big meal with it but I don't get sick on these pills. Other days I can get two pills in me if I take one early in the morning and one at dinner.

Thank you Michelle and Emily for keeping this going! I, and many others I'm sure, are so appreciative!!!!

I can relate! I'm in the process of trying to get a wheelchair. It's both exciting to think of the things you can do on your own using these devices (like maybe I won't have to crawl around my house anymore) and upsetting to admit that at our age we have to consider these options. I recently got a shower chair. I cried when they brought it and there are still times when I have a hard time looking at it (I try not to think about it..I just hop in the shower and use it) but...it has helped me more than I ever thought it would and that is exciting and freeing to me. It's nice that I have a little energy when I get out of the shower instead of the shower zapping all of my energy. Hang in there! I'm glad you are using the tools you need

Welcome! I'm sorry you are having to deal with this at such a young age but I'm glad you have this site to help you through. I was diagnosed 9 or 10 years ago but it's only been the last year and a half that I found this website. I wish I had had something like this when I was first diagnosed and when I was younger.

Well, my answer is a bit odd but I'm not the only oddball out there I am extremely sensitive to meds. When I was in the hospital the Dr decided he was going to treat me (in terms of medication dosage) as if I was an infant. I started out taking a liquid suspension of metoprolol. ONE cc every four hours. I'm now taking 1 1/2 to 2 CC's every 6 hours but I often skip the last dose before bed. This has lowered my heart rate some but not so much that I have the bradycardia excessively and it really hasn't affected my BP at all. Now, most Dr's will tell you this dosage is too small to even begin to work on an adult but it is working for me (in fact, when I got out of the hospital and saw my cardiologist he didn't even know the drug could be written or mixed the way I'm taking it but was willing to keep me on it). It is somewhat of a hassle because it has to be compounded (thus it costs more--I'm paying $35.00 for about a 3 week supply) and it has to be refrigerated so if I want to be gone for a day a have to take a cooler with me. I'm willing to live with that though because it is helping a little.

I've called two or three times this year but I couldn't tell you how many times I've called in the past. Sometimes I feel guilty for calling but if I've been tachy for a long time and my heartrate isn't coming down then I start having trouble breathing. Since I live alone and can't drive at that point I have to call 911 (especially when it's in the middle of the night and you can't get anyone else to your house that quick). Try not to feel bad...your taxpayer dollars support these services in many cases and they are there to help people. I've had a couple of times where they didn't treat me well but usually the EMT staff is nice, wanting to help. In terms of what to tell them...I tell them I have a complicated medical history with tachycardia that sometimes needs to be treated with IV fluids and that I need to have my electrolytes checked. Since they aren't equipped to do all of that they have no problem taking me to the ER. I'll give them the diagnosis of Dysautonomia and most of the time they don't know what it is which tells them they need to take me to the ER because they know they don't know what to do for me. If you are worried about this, one thing that might help you is on a "good day" go to the local fire station/EMT workers and introduce yourself and explain your condition and what is helpful to you in a crisis. It doesn't always work but in many cases it really does help them.

Jan, Even though I've kinda been "out of the loop" the last month I have always kept you and Jeff in my prayers. You also both remain on my prayer list at church so you have MANY people keeping you in thought and prayer. I'm so glad to hear you've had some positive news and I hope you will continue to get better reports. Keep us posted! Ps--Have you ever gotten you business off the ground?

Hi Everybody!! I'm so sorry I have been out of the loop so much for the past month. I've had two major crashes landing in the hospital both times, I had to pack and close on my house and move, my church fired our preacher (who at one time I was close to) and then our former minister passed away suddenly and unexpectedly. It's just been one thing after another. I have a physical therapist coming to the house twice a week and am getting ready to have in-home Iv's once a week. I guess it doesn't sound like much but it is taking all my energy trying to re-stabilize. The move has been chaotic (like many moves are); it's amazing how people mess up every little thing. The phone didn't get transferred over correctly, the cable company hooked me up with the wrong (more expensive) service etc etc. So, I'm finding myself on the phone several hours a day trying to straighten things out. Now I'm having trouble with the whole wheelchair issue. The store I was working with suddenly isn't calling me back so I decided to start from scratch (that store was working with the Dr's I had in the hospital who don't know my case anyway. Those Dr's wrote the order for the wheelchair but then on Medicare's form stated I didn't need it to get around inside my home --hello??? I'm CRAWLING around my house because I'm passing out so much). So, now I'm working with MY Dr. and a different provider. I'm being told that most likely Medicare will deny my claim. Then what? I'll be back to crawling around on my floor. Our Gov't system makes no sense!!!! UGGGHH!! I'll just cross one bridge at a time huh? The heat isn't helping matters; the fatigue is unbearable some days. Okay...I'll quit complaining but thanks for listening Now that I am temporarily settled (I will have to move again in two months) I will try to get back on track and catch up with folks. Welcome to all our new members! I look forward to getting to know you. Hang in there everyone! TTFN, Poohbear

Hi everybody!! Thank you so much for your well wishes and caring thoughts/words; it means more than words could ever express!!! I am home from the hospital. I didn't have good care there and ran into Dr's whose Ego's were mighty big considering most of them had never even heard of dysautonomia before. The good that came out of it though was the social worker came in and they have been a HUGE help! I am getting set up for some physical therapy, in-home social worker, they got me a shower chair and delivered it to my house. I'm hoping to go to the mobility store tomorrow and pick out a wheelchair. It's hard for me....I will turn 37 on Monday and it's hard to face the reality that I'm having to resort to using a wheelchair as young as I am. I feel "old" using the shower chair, wheelchair etc. I know there are people my age who have debilitating illness....I just don't want to be one of them and I'm having a hard time accepting the fact that I truly do need these tools and aides right now. I go tomorrow to see my cardiologist (he was 35-40 miles south of where I live and the day I went to the ER I was too weak to get down there). I'm anxious about the appt and not sure they are understanding how much need I have. I don't want them to think I'm giving up by requesting and using these devices. The hospital Dr says I need to get to Vanderbilt. He thinks even though I have been to Mayo that Vanderbilt will take more interest and want to follow me. Vandy is about 4 hours away so it's the closest to me. My brother graduated from Vandy (do you think they will give "priority" to family members of alumni --probably not but it would be nice). So...I will try to catch up with everyone when I am able. At the moment my life is complete chaos. My house sold and I'm closing in about 2 1/2 weeks so I have yet to start packing (still don't know how to manage that when I'm barely able to sit up!). I had to give up the 3rd floor apt and a 1 bedroom ground floor will not open until the end of Oct so I have to find someplace to live the next 2 1/2 months and right now I don't have a place to go to. I had some people from church move my air mattress downstairs so right now I don't get upstairs often. We tried to move my computer downstairs but for some reason I'm not getting a DSL signal from the jacks downstairs. I'm not paying someone to fix it since I'm only here for two more weeks. That being said....I may not be able to communicate with you guys as much the next couple of weeks until I move and can get situated where everything is accessible to me again. I do miss everyone though and wanted to update you. I'll do my best to keep you posted and catch up with everyone soon.

Oh, tears came to my eyes when I read your post! I can relate to your feelings and have shared these same thoughts MANY times!!! It is normal to grieve the losses you have had and you need to allow yourself to do whatever grieving you feel. Of course anniversary dates sometimes bring sad feelings to us. Try to be extra gentle with yourself today. You are valuable and we all need each other. You add to people's lives here on this site and we certainly do not view you as a burden. I know it can be scary when you think about the future; we don't know what tomorrow holds though. Different things work for different people but I know for myself it has helped me to use the things I've learned from my illness to try to help other people. I'm working on compiling a "resource" book for the people at my church who work with benevolence to know where various community resources are and what services the various agencies offer. I know what a struggle it's been for me to find places and people to help me and I don't want others to suffer. It's a way to turn my frustration into something that will help others which does help me feel more productive and valuable. Like I said earlier, try to be gentle with yourself today. I'm sending a hug your way.

Good Topic!! I love Winnie-the-Pooh and all the characters. My friends nicknamed me poohbear and it has stuck. I like all of your stories! Dawg Tired--Jeff Foxworthy lives about 20 miles from my house. I've met him before...he's so nice!! He is very active in this community. War Eagle, Oops! I'm from GA Bulldog country Although, my favorite college team is University of Tennessee.

Sounds like you've been through an ordeal! I'm so sorry you had to go through that but I'm glad you have some a/c as of now!! Do you mind my asking...what was the procedure for you to get the form and what kind of information do they need from you? I'm getting ready to move soon and I think I might see if my company has something like this. Hope you stay cool now!!

Thanks everyone! I just got a call from the Apt complex and I am approved so all the paperwork has gone through. But...they do not have the handicap accessible apt available anymore; it was leased out the day before I toured the property. So I will move into the third floor and not get out of the house much until a ground unit is available. It will work out okay, although it is a pain. Actually though, it's so hot right now that I'm not able to get out much. Maybe by the end of October or early Nov is will be under 80 and that will be better.

Well, I finally have a contract on my house. It's good because I need to sell for financial reasons but sad because I feel I'm being forced to sell and it's yet another thing I'm losing because of my health. Anyhow, now I quickly have to find an apartment. I am limited since I can't drive and dont have family. I need to stay close to my church so that maybe it will be easier/convenient for people to help me out. I'm in a large metro area so the competition is tight (which is actually good for keeping all the prices comparable) but space is very limited especially for a 1 bedroom. The only complex I found, in the area I need to stay in has only two 1 bedrooms left. One on the THIRD floor (no elevator) and the other is a handicap apt. on the ground floor. The handicap apt is not as nice (has no linen closet, has a pedestal sink in the bathroom and therefor no bathroom cabinets and very little counter in the kitchen). The complex has said I can move into the 3rd floor apt and then when a 1 bedroom becomes available on the ground floor they would let me have first grabs at it. They say they may have something opening up at the end of October. I already had to put my deposit down because my house is closing in one month so I had to make a quick decision and since this is the only place with a 1 bedroom I grabbed it. I was blacking out trying to get up to the third floor to look so I know it's going to be an issue. I feel bad about taking a handicap apt though. I don't like the idea of taking a handicap apt when I'm not wheelchair bound because someone else may need that apt much more than I do. It's nice the Apt community will let me move into a ground floor when one becomes available but there are no guarantees as to when one will open (although I will make sure everything is put in writing before I sign the actual lease). What would you guys do if you were in this situation? Would you take the ground floor handicap apt and possibly limit someone else with a greater need or would you take the 3rd floor and cope with it until a ground floor unit opened up? As always, I appreciate your input!