Lovebug

I totally understand about the memory and re-reading sentences. I have always wanted to go back for my doctorate but quit looking when I got sick. I have the same fears as you do about returning to school. Good luck to you!

ABSOLUTELY!! I've noticed changes in taste and hearing. I hardly question any new symptoms I have anymore b/c I just chalk them up to Dysautonomia. The nervous system is the worst thing to have diseased! I really hate this!!!

Lieze & Brye, Have either of you thought of getting your master's? I have mine and I teach for a brick & mortar university. The hours are great but there isn't much flexibility if I'm sick during one of my classes. BUT I am off all summer and during breaks. I do clinical 1 day a week from 6:30-12p for 8 weeks each semester. During the summer I teach for an online university. If I became totally disabled, I could, at the very least, work online. This, however, disqualifies me from disability (I think). Anyway...just options if you still want to work and keep your RN license.

I woke up one morning, rolled over in bed, and all of a sudden my heart started racing. I used my BP machine and my BP was 170/120 with tachycardia. This was before I was diagnosed so I ran to the ER. They told me I was dehydrated and started a 1000 mL bag of Normal Saline (this has 0.9% sodium). Being a nurse myself I questioned the nurse and said, won't my BP go UP, not down? He said, "Yea, you would think so". Well it didn't. It gradually came down and I was much better. Then came diagnosis a few months later and thus the fluid loading began. There were days I couldn't go without 80 oz of water. I don't salt load but my doc told me to alternate my water intake with Powerade Zero so that I wouldn't dilute myself too much and have low sodium (which I'm prone to).

Hi Bren, Wow...it sounds as though you are miserable. Hopefully with your treatment underway you will improve. I did...markedly. I take a low dose Beta blocker (Inderal) and very low dose of Celexa for my GI issues. Both of these help me but I am still not immune to "storms" (that is what I call my attacks). As a matter of fact, I had one last night: HR jumping all around from 71-120 in a matter of minutes (up & down, up & down), extremely nauseated, diarrhea, & feeling of anxiety. Regarding your questions: HyperPOTS...not sure but it is my understanding those of us (I've never actually been diagnosed by the doctor)that have this will have a HR increase and BP INCREASE upon upright posture whereas lots of POTS patients have a BP drop upon rising. If they drop low enough they pass out. My BP can rise just from me lying in bed and inclining upon 2 pillows. So I'm pretty sure I have hyperPOTS. Meds: as I stated above, Inderal 2.5mg once daily & Celexa 2.4mg (normal dose is 10mg). The key is to start your meds slow & low. I have lots of Chest Pain but find my meds to help. I likely need a antacid too. Nerve pain: I have been diagnosed with fibro but my symptoms are few and far between since I've been treated this past year. I do occassionally have these extreme sharp shooting pains in my abdominal area that I can only relate to what shingles might feel like. But Thank God they do not last long. I have no answers for you there. This forum is a wonderful and supportive place. You will feel right at home here...welcome!

I have that in both ears. It happens to me mainly with position changes. I've had it since before I was diagnosed but it doesn't make it any easier to accept. I used to count my pulse when lying on my stomach, LOL! I also sometimes get the sensation that my ears are being cupped or that I'm about to lose hearing (or pass out). Nothing ever happens though and it only lasts a few seconds. Isn't this disease fun?

Hi Enko, Thanks for all the info. My doc checked my eye pressures and looked into my eye for any abnormalities but found nothing. I honestly believe the Dys has all of my sensory nerves being overactive. But my answers to all of your questions are "YES".....the entire eye ball hurts and sometimes it radiates to my head (and headache develops). I have noticed my eyes are blood shot most of the time. I get nauseated all the time anyway so not sure if it is related to eye pain.

I have NEVER been a Headache Sufferer until this disease (Dysautonomia). However, I now get frequent headaches. But I describe them as more eye pain/pressure than anywhere else in my head. I'm not sure if they are related to my eyesight but according to my opthamologist, my eyes are fine along with my eyeglass prescription. Sometimes I wake up with it and sometimes I go to bed with it. They are really random. So I don't think it is my vision. Do you measure your daughters blood pressure with the headaches? A natural reaction is for the BP to go up with pain but that can also exacerbate the headache. Regardless, I really hope your daughter gets relief....and a diagnosis!

Hi Heather & Todd, I have recently started working out again (I was very active as a runner and lifted weights). I'm the type where it is "all or nothing" and would go all out on my workouts. As I got older & married, etc, I slacked off but never felt I was severely out of shape. That's why when I first got sick, I found it funny that I couldn't walk up a flight of steps without getting SOB and Tachy. I could do it one day, but not the next. After testing at the Mayo Clinic in Jacksonville, I was told that I was out of shape and needed to "exercise, exercise, exercise". What did I do? Just that! And I did it hard with 5am classes for 8 weeks, alternating between spin & body pump. Needless to say, my muscles would fatigue out alot easier than I had ever remembered when doing weights and I'd develop severe diarrhea on days of high cardio (spin). I thought my IBS was just taking a turn from constipation to diarrhea but I now know it was the Dys. I think it's all related anyway but I just got worse and worse until I quit exercising altogether...didn't know what was happening to my body. NOW (3 years later & after being diagnosed for a year) I'm really trying again. My doc told me slow & low on EVERYTHING: meds, supplements, exercise. He suggested walking on the treadmill at a very slow pace for 2 minutes a day for a week, then up it to 4 or 5 minutes. Then more. However, not to push myself too hard. Over time I have started feeling alot better and even did well with exercise. I've worked up to doing 30 minutes on treadmill with 1# weights in my hands (I do arm exercises) and I get almost 1.5 miles done. As you can see I'm not burning up the track but 10 of the 30 minutes is at a full incline so my heart rate gets really high. I've noticed that I've had joint problems (lots of pain) since before the exercise but it has gotten alot worse after. I just saw my doc on Thursday and he told me to cut back on the exercise.... So now what!?! I felt so good about the progress I was making but my wonderful MD said my body just isn't liking the exercise. He said I could do the arm exercises but to do them seperately and not to incline my treadmill. All kind of thoughts went through my head, such as...what if this is arthritis or did I injure myself etc....but my doc doesn't like anyone else treating me b/c he says the overall medical community has no understanding of Dys and they will just "mess me up" by loading me up with meds. I tend to agree with him but I really don't want to scale back on my exercise. I apologize for the long post but you can see that everyone is affected differently but one thing is common: we are all affected by this dang disease!!! I wish you well and hope you find a happy medium with your exercise. I'm just happy to walk around without a racing heart now!

Hi Lieze, I have a suggestion for you although I'm not sure how realistic it is......what if you could get a miniature refrigerator for your room? You could put it on a cabinet where you keep your own apples, knives, and cutting board. I'm so glad your kids are supportive of you. Just keep in mind that you WOULD be a normal daughter, wife, & mom IF you weren't sick. It isn't your fault and if no one else realizes it....your kids seem to. And they are the most important people in all this. I pray for you (and everyone here) often so never forget that we are all here for each other.

These are all of my Dysautonomia illnesses: fibromyalgia, IBS, POTS/OI All of my symptoms rotate and I may or may not experience them everyday and overlapping. I really do live moment to moment.

Hi Lieze, I so hope things get better for you. Can you talk with your dad and see if he can help with your mom? Maybe he could reason with her when it comes to drinks and food. Also, you really need to gain weight...were you able to tolerate Ensure? I wish I could give you some of my weight!!! I'm keeping you in my prayers!

The Mayo clinic in Fl is in Jacksonville just north of St. Augustine. It is close to the beach and in a nice area. I've been twice and the first time my PCP missed a diagnosis of Fibromyalgia. Although we did talk about it he was doubtful but I don't really blame him. The second time I went was for excruciating abd pain & diarrhea which turned out to be a change in my IBS (which I now believe is related to my Dysautonomia). Anyway, I'm not sure how good they would be for Dys but I liked them for what I had done. They are very efficient that's for sure. Sorry I don't have more answers. You might also want to look here: http://www.mvprolapse.com/ Good luck to you!

Celexa has given me a life without severe abdominal pain and more recently it has helped me with frequent diarrhea. No side effects were experienced but I went "slow & low" on the dose. I still don't take a full pediatric dose.

Thanks for all the responses. I always feel better when asking a question here. All of you are soooooooooo wonderful!

OK...I have hyper POTs but have done progressively well this past year. I notice that I get eye pain/pressure and head pressure (sometimes in the ears too) when I'm in certain positions. It gets pretty intense and sometimes feels as though I will lose my hearing. At times I have it and it doesn't matter my position (I think). Does anyone else get this &/or know what it is? Also, I've been trying to incorporate some exercise in my life to promote overall health. I thought I'd be out of commission for 4 days afterwards as I've had in the past but so far I haven't had that. However, I will get my old fibromyalgia symptoms (flu like muscle aches)later in the evening after I've walked on the treadmill. Sometimes it is so bad that I'm restless in the bed, writhing in discomfort. I almost broke out my old trusty heating pad but I was too hot. I thought it'd be interesting to share since this has been my reaction to exercise. I wonder if an NSAID would help...?

I am treated by a preventive cardiologist that has accumulated Dysautonomics over the years. I got lucky twice I think b/c I went through 4 doctors (2 primary, neurologist, & EP cardiologist) before I found mine but my GYN is who referred me! Imagine that....a GYN! It took my GYN to say "it sounds like Dysautonomia and I know a doctor that treats it". She even told me that beta blockers are the usual treatment. So my two life-saving docs are my GYN & my cardiologist. On another note, my cardiologist told me that not many doctors care to treat Dys b/c there is no money in it. I was floored! No money? We make lots of doctor visits, isn't that $$$!?!

Hi Tinks! I think what you are referring to in your post is "troponin". It is a cardiac specific enzyme that elevates in the presence of damage to the heart muscle. If you have decreased blood flow to your heart (as in a blockage) and damage occurs to the heart muscle, troponin will be released hours afterward. This, however, has nothing to do with sudden cardiac death which can happen as a result of a heart arrhythmia. I'm no expert on EKG's but I don't see why Dysautonomia couldn't cause some arrhythmias like ST, SVT, & those from electrolyte imbalances. Maybe someone else can give you more info.

Hi Tennille, I haven't seen you in a while...I so hope you are doing better! You have good advice.

Hi Camirae, You sound exactly like one of us...Welcome! To answer your question: Yes, you can have Dysautonomia (POTS) without having MVP. You should check out my profile where I have a link you may like. Regarding chest pain, I've had any type you can imagine. Partly due to GERD and partly the Dysautonomia. Teecee, Your beta blocker should cause vasodilation, not vasoconstriction. Are you having a problem with yours?

Yes! LOL, I do! I don't even go outside if I can help it. And what's worse is that I must wear jeans everywhere I go b/c with the heat/humidity every place has their A/C kickin on high blast. They always freeze me (even Walmart).

That used to happen to me but the tachycardia subsided on it's own. I think I was having adrenaline surges. Maybe that is what you are experiencing...

Well if she wants you to get out of bed....but you can't, then compromise. Go from the bed to the couch. That way you are meeting both goals. Explain to her that you might meet expectations sometimes but other times you won't and that is just the nature of the disease. Don't make anyone force you to go beyond your capabilites b/c they won't pay for it; you will!

ABSOLUTELY! Most people didn't actually respond but the ones that did were all positive. I even sent it to some of my coworkers. They all ask me how I'm doing now. My mom is more understanding too. Most of my symptoms came on strong after my father's death and my mom treated me like I could control my symptoms (in my head) but since this letter she is way more understanding. I'm glad b/c my aunt has fibromyalgia too so my mom can treat her appropriately now. I have always had the full support of my husband so I'm lucky in that aspect. Did you check out the websites I have at the bottom? The Spoon Theory is very good if you haven't ever read about it. BTW, feel free to use the letter if you need to.

Can your mother-in-law read? If so, find her some information from the internet to give to her. Also, writing a letter to your family/friends might help them be more understanding. I explained every detail of what I was feeling (& this was before I knew I had Dysautonomia). Here is a copy of my letter (sorry it is so long but I was very detailed with it so they would get a true understanding): Dear Family & Friends, I have struggled with the need to send an explanation to friends and family about my Fibromyalgia/CFIDS (chronic fatigue & immune dysfunction syndrome). However, it is extremely difficult to put into words. These diseases are debilitating and I’m fighting to prevent that every day! So here is my explanation of what this disease means to me. Hopefully this will help you understand what I’m going through and how you can help me. It is very frustrating for me to be so unreliable and wishy-washy when it comes to making plans with you. Your part is just to understand and still be my friend regardless. This is what I personally experience on a daily basis: 1. Pain-this pain can be any type you can imagine (aching, throbbing, burning, gnawing, etc). It can be in any part of my body but I experience it mostly in my abdomen. I can also hurt all over or in certain muscle groups (such as legs, arms, shoulders/neck, or back). I have relinquished a normal life for one stuck to a heating pad. I sleep with the heating pad and use it frequently throughout the day with little pain relief. This pain comes and goes with no rhyme or reason but is experienced daily. The only way I can describe this pain is to imagine you have a severe case of the flu…where you feel that all over body ache, where it hurts to be touched……well, that’s it but without the fever. Another comparison (for those of you that exercise), it’s like exercising with heavy weights when you haven’t done so in years…the next few days…the soreness that you feel…..it’s comparable. 2. Fatigue-OK, we all have this. It’s no secret that with todays fast pace, everyone experiences some type of fatigue or tiredness. But I’m not talking about that. I’m talking about fatigue so severe that I actually feel like “a dead man walking”…..I could collapse at any time and sometimes it takes too much energy to breathe! It is unrelieved by rest. Even if I have slept for 14 hours, I still wake up with this fatigue (more about sleep later). It is almost to the point where I can’t function some days…thank goodness I have more days where I can. 3. Heart racing and shortness of breath-this can happen at any time. Sometimes getting out of bed, brushing my hair & teeth, and putting on clothes will bring on these symptoms. Sometimes I can just be lying in bed when I feel my heart pounding. I am starting to get used to it but it is still miserable (& scary). Imagine how you would feel just before giving a speech to 100 or so people…that pounding heart & air hunger feeling that you get?.....yea, that’s it but when I’m just lying in the bed! And it exhausts me. 4. Dizziness, tingling in hands & feet, and shooting shocks throughout my body-OK, these are all self explanatory and miserable. How would you like to feel dizzy when you are trying to drive or work? Or how about getting random, low voltage shocks throughout the day? Don’t worry, I wouldn’t wish this upon you. 5. Impaired memory & decreased concentration-this is extremely frustrating. It is something called Fibro-fog and affects my ability to be witty and fun. Alright, that’s a joke but it really does make me angry that there are things I can’t remember or that I have to read a sentence over & over & over again and I still don’t “get it”. 6. Tinnitus (ringing in the ears)-not much to say……it can get so severe that it wakes me up at night and is very bothersome. I live with this one constantly. 7. Insomnia-Fibromyalgia prevents me from entering REM sleep (the deep restorative sleep that we need for our bodies to repair itself). So I could conceivably sleep for the 14 hours I mentioned in # 2 but not actually get any sleep…CRAZY, I know! For me, this waxes & wanes. I just wish I would get restorative sleep more often. 8. Muscle stiffness-Hahaha…no I don’t mean middle age stiffness (like everyone gets), I’m talking about 100 y/o person stiffness. If I sit in a chair for longer than 10-20 minutes I can barely walk. I actually need a walker to ease myself back into moving again because I can’t weight-bear. 9. Others that I experience-sore throats, swollen/tender lymph nodes, decreased libido, depression, moodiness, headache, eye pain, cold sensitivity (especially in my hands), endometriosis, chest pain, muscle twitching & Restless Leg Syndrome. I know, I know, I sound like a bundle of joy and so fun to be around, right!?! (You can feel bad for my husband now). So why am I telling you this? Why do you need to know that I’m so miserable? *I just want people to believe me and not act as if I am making up my symptoms or being “lazy”. Who would want that kind of negative attention? You hear, “Oh, just suck it up. You will be o.k.” I wonder. Do people tell cancer patients that? What about people with high blood pressure, people who are handicapped, or those who have “real” diseases? Are they told to suck it up or that it is all in their head? Many people say that I am too young to be having so many problems. My sentiments exactly! Do people really think that I like feeling this way? Do you think that I like being told that it is all in my head or that I am being lazy? Not really. Most importantly, don’t judge a person by how much they are able to do or not do. They are doing the best they can. I would give ANYTHING to be my old self and to not be in constant pain. It *****. I push myself to the limit. Nobody knows what I go through or how I am feeling. By looking at me; I look like a perfectly healthy person. A lot of people who have AIDS do too. If someone you know or love has any kind of disability, show them a little respect. Don’t make comments like, “Oh, you are just lazy”, “Suck it up”, “Will it away” (I love that one), or “Maybe it is all in your head”. They aren’t asking for pity or consoling; just respect. Leave them alone and don’t dismiss them. You may find yourself in a similar situation someday.*This part I used from the internet but it conveys my sentiments exactly.* Note: I believe my Fibromyalgia/CFIDS is a direct result of taking a cholesterol-lowering statin drug (Vytorin) about 3 years ago. So if you know anyone taking this type of drug, ask them to consider the side effects. It might just be better to use diet/exercise to lower the cholesterol versus taking a drug that may cause lifelong side effects. I only took mine for 12 days! Sites that may help you understand: http://www.fmaware.org/site/News2?page=NewsArticle&id=5352 http://www.butyoudontlooksick.com/wpress/wp-content/uploads/2010/02/BYDLS-TheSpoonTheory.pdf