jenglynn

Hi Everyone,

My cardiologist said I needed a Beta Blocker to contol my HR which would get into the 150's while sitting. When I was still walking it would go between 150-200 so he was pretty adamant that I needed a BB (tried Propanol- sure that is spelled wrong) and it DID lower my HR but I am also Orthostatic Hypotensive and I don't think either one of us realized to what severity until I tried it. On the third day, after several syncope spells- which was nothing new- but I had a serious syncope episode and I feel and hit my head and ended up with a nasty head injury and concussion- I only needed 12 staples and a day of obsSi ervation in the hospital. It was my first "real" injury in two years from syncope. I had many, many horrible episodes of fainting even after that... and then ten days later I had another head trauma and concussion- although this one was was much worse. This time I was admitted again to the hospital and I think I was inpatient for about a week. I realized while inpatient just how low my BP was dropping (even though I was taking Midodrine and Florinef) because I didn't have BP monitor at home. So the BB was very dangerous for me... even sitting upright, not standing, it was dropping to 40/20. So when I would stand it would be so low it wouldn't even be detectable. They tried a different BB for me (I am sorry, can't recall the name) while inpatient and nothing changed... so Beta Blockers are definitely very dangerous for me because of the OH but it is disappointing because it REALLY does work with lowering my heart rate. Nothing else does.

I am still on Midodrine and Florinef for now- and many other drugs.. but not sure I will stay on the Florinef. It is helpful and I would hate to give it up.. but I don't know how much longer I can tolerate the headaches and the head pressure I get with it. I think that my Post Concussion Syndrome contributes a LOT to my headaches because I have them so often- and with Florinef the intensity is just not even tolerable. It is like a vice is squeezing my head and it last for hours. So I will need to find "something" to replace the Florinef as well. It is a never ending battle if you choose medication with this illness (many choose not to take any) because it changes all the time (in my case anyway). Always changing doses, trying new things (also tried Mestonin- also couldn't tolerate) and just trying to keep tabs on what I am taking and any new symptoms that crop up- that happens a LOT to me! It seems as if I am constantly noticing something new, usually very odd and something I've never had before, or maybe something I had as a teen but not since (I am 37).

Good luck to you... I really wish you luck and hope that you can find the right combination of meds if you should decide to take any. Just start at low doses and really do your research on any before you try them and you can always run them by here for some feedback. Of course, we all react differently, but I have found this forum to be such a valuable resource and I hope you will as well.

Jen

OMG.. Yes. I pretty much never "get up" when I am out because I am in a wheelchair... but at home any "up and down" makes all of my symptoms worse. I can't "walk" so all of my mobility is like Wendy's.... I crawl or scoot. However, even crawling doesn't "stop" my syncope but at least I am closer to the ground when it happens I will say though after doing this for over 4 months now.. it is really taking a toll on my poor knees... they are both always bruised up and swollen and for some reason I just have a feeling that going through 2 knee surgeries right now just wouldn't really my situation... lol. That's just a guess Because, my house is not at ALL wheelchair accessible I am trying to look into options where I can move around when I need to... but I can't be completely upright because of extreme hypotensive- and such quick syncope that I really have no warning. But by the end of the day, my symptoms are awful because of the strain of getting up and down as much as I can.

Jen

The example I used was just one I made up for the purpose of the thread- it was not a sample of the actual email. The that I sent out was much more like a "real" email would look. Not a lot of repeated letters, which could happen from sticky keys or something. And the words were all about the same length as the words were that I was actually trying to say.

I would LOVE to blame the computer, I am not sure that it is plausible in this case, as MUCH as I would like to hope. I have had many times when I have sent out emails that make NO sense at all but at least the words were real. Or I have sent another to someone when I was writing the email and my husband was talking to me, and I ended up typing my husband's words verbatim vs. what I was trying to say to the person in the email. Or another time I did the same thing but I was typing words that were being said on the TV in the background instead of what I was trying to say to the person- this time the manager of my HR deartment. Nice! That was slightly embarrassing to say the least. She ended up sending it right back asking if I meant to send it and I had my husband read it for me, and to be safe I just dictated to him for the reply and apologized. There has been a few times that I have also send something with one or two words were gibberish but never the whole email.

I should mention that I have dyslexia and I am wondering if that episode had something to do with that? Dyslexia is not something that I typically struggle with anymore but it is possible that dealing with the autonomic problems as well as all the concussions... some part of that area of my brain was triggered and agitated? I guess there is no way to know but it is scary and I am really troubled by the amount of cognitive dysfunction that I've had. It is just ONE more thing that I feel I have lost to go along with everything else: health, energy, independence, walking, driving..... the list goes on now... but adding the cognitive loss is devastating. I am just praying that much is temporary and I can regain that part of me that really define me.

Thanks for listening, as always... You are truly the best!!

Jen

I never thought of a computer malfunction.... That is a much preferable idea than I'm losing my mind And I'm glad I didn't scare you away. You' have rebel spirit...

I had an incident happen last week or so that I'm still trying to decipher. Lately, my writing skills have suffered quite a bit- not just from autonomic issues but Post Concussion Syndrome DX after 7 or 8 (not quite sure) concussions. I sent an email to a friend, ( I should say I sent it kinda late and I as starting to get a little tired... But STILL) just a short paragraph email confirming I'd be home for a visit the next evening. I re-read it, twice as always because I make so many errors, which I unfortunately never detect. Everything appears to me as I mean to type or say them and I am not able to see errors. After making several errors sending emails to people I usually have my hubby read them before I send them. This time I didn't,

Anyway, I wrote the email, re-read it, thought it was fine. The next morning, I get a call asking what the email meant and I'd it was 'code' for something? Ummm.... No. Just telling you to come over. She forwarded it back (and I checked sent- just to make sure she wasn't screwing with me because that is something she might do).. And sure enough... Every "word" was complete gibberish. Short example below

Hjiugd,

Figgtyhjjggf kiuhfr Esther kit shjikfd eeaadfth hottkjjuk gresfjhythjjj fhhgfswdjuij.....

You get the point. The WHOLE thing- was written like that!!!! Including her name and mine at the end. When I saw it after she pointed it out it appeared as the gibberish it was but when I sent it, it appeared completely fine! I wasn't falling asleep tired or anything.,. Just getting ready for bed. It was only 8:30 or 9:00 and due to my friendly adrenal surges, I'm rarely asleep before 4am.

Has anyone ever had this happen, or HEARD of it? I mentioned today at my neuro appt and he said it does happen but he would attribute it more to the concussions than autonomic issues... But to call him if it happened again. Just so ODD!!!!! I just can't make sense of it (literally AND figuratively). Anyone have input or have I scared all of you away from speaking to me ever again?

Thanks, Jen

Sorry to hear about your bad experience, Sandy, with Adderall. Anything that keeps us awake at night more than we already are cannot be a good thing And since it didn't help brain fog, concentration, etc, it wouldn't do much good to try the regular, non XR dose.

For some reason I don't understand, ALL drugs, not just Adderall, seem to just fly through my body. If something should last 12 hours, like Adderall XR is supposed to, I'm lucky if it lasts 6 before any benefits are gone. Midodrine (I take 15 MG 3x a day) I know is a short lasting drug, but for me, it's ridiculous! After 1 hour, any effects are gone. But for that hour, my low BP behaves a bit better so I continue with it. There must be some "reason" my body metabolizes pills so quickly (usually in about half the time of normal) but I don't know what it could be and I'm hesitant to even bring it up to a doctor... I've been called crazy often enough.

So, sleep has never eluded me due to Adderall but I don't sleep well due to nightly adrenal surges which occurred months before I ever started the Adderall. I got the okay from my neuro to start taking Benadryl at night to help with those, so fingers are crossed.

I really hope that the ADD meds help those of you considering them. I have to say I take mine in combo with an antidepressant and my doctor felt it was the combination of the two that helped me so much. I've never tried Adderall alone without my Paxil. I do think most people know fairly quickly if they will work or not. If you are losing too much sleep or weight, that's not good. I gradually increased my dose so never really had that issue.

And it's helped a TON with my anxiety, and helped with concentration, brain fog and focus as well but I have a LONG way to go. By no means is it a cure all. Besides my normal POTS brain issues, I have Post Concussion Syndrome after 7 or 8 concussions now to date. I'm not sure which condition is contributing more to my issues but the days with Adderall are better than the couple days I've tested without, but miracle cure it isn't. I still struggle but it makes it a little easier for me to focus, stay calm and try to concentrate. I'm also better at recognizing WHAT is bothering me when before I would have a clue.

Jen

Issue,

If I'm not mistaken, your DX was made at Mayo, correct? When I was recently inpatient at Mayo (Dec 2011) in Rochester, there was not ONE doctor that would even entertain the idea of a connective tissue disorder, such as EDS, having anything to do with any form of autonomic dysfunction. In fact, the genetic counselor that saw me said I clinically have all signs of EDS but was reluctant to actually diagnose me with it because she felt that DX would lead doctors down the "wrong road" in her opinion- so my DX lists: connective tissue disorder, hyper mobile and hyper-extendible joints. Doesn't explain the skin issues, vision issues, or other EDS like signs I have. Both my grandmother and her father and a sibling all died of a blood vessel bursting in their brains. I have a 13 year old daughter who was diagnosed with a "connective tissue disorder" disease-undefined- and she was a very delayed sitter and walker. She has been prone to headaches over the last two years and had her first episode of syncope at age 11. Has had quite a few more since. Don't see any other symptoms at this point besides: very fatigued all the time, the syncope mentioned, and very clumsy- poor balance and is still extremely hyper mobile and her and I both pass all of those criteria they give you to text flexibility. Her checkups are always normal- BP and HR fine so far.

I'm just frustrated because even when I brought up studies and links I was basically politely told to shut up and I have an auto immune disease I tested positive for and there is no link between tissue issues and autonomic issues. But my case is pretty severe and I think I need to explore all options- but they wouldn't listen. HOW did you get your Mayo doctor to be opened minded about it, Issue?

Thanks!!!!!!!

Jen

Yep.. I have the same "issue". My normal temp is usually between 95-97 degrees. I vary though... Sometimes I feel so flushed and feverish yet my temp is still in that low range. Other times I'm freezing cold and can't warm up. They told me at Mayo that they believed that whatever aggressive antibody I have that causes my auto immune deficiency has "destroyed" my body's ability to actually have a fever. I'm not sure if that's the case or if I do have a "fever" it will not seem like a typical fever to providers.

I've told this story before, but last year I got appendicitis and went in the ER and my temp was around 97. Even though I had all the signs they just couldnt believe it was my appendix because I had no fever. But my labs showed a very high white count so they did exploratory surgery- sure enough- acute appendicitis about 80% or closer to rupture. Temp never got above 97.2 but the whole time I felt like I was burning up, flushed, chills, all of the typical signs of a high fever.

I really think this is an issue that needs to be addressed further. Our body being able to have a fever is huge especially to those of us with immune issues but I can never get any doctor to take me seriously when I bring it up. My parents have told me they never remember me having a fever over anything more than 99 in my entire childhood.

Jen

I've had to go in a couple times over the last year for non- autonomic related things: appendicitis once and a bad knee dislocation I couldn't get back in place myself after lots of trying!!! Other than that, the ONLY time I go in is for syncope related falls where I've had head trauma and need staples/sutures, which is more times than I care to think about over the last 6 months or so. I went in one time before I was diagnosed because I felt horrible and couldn't catch my breath. My shortness of breath was such a scary symptom to me in the beginning. I was sitting at my desk at work (actually work for this hospital so it was easy enough to go) and gasping for air it seemed and couldn't talk because I "thought" I had no oxygen. Of course, my oxygen and EKG were normal so I was released with an anxiety diagnosis of course.

The doctor was so rude and condescending to me and made me feel like a complete idiot for wasting his precious time. I had been having quite a bit of syncope as well and when I mentioned that it was of course "You are getting up too fast" and I was hyperventilating due to my anxiety problem and he told me I didn't need the ER I needed therapy. If he would have BOTHERED (or ANY of the doctors from the ordering MD to the cardio doc I'd seen for my "unexplained but anxiety, nervous personality induced syncope") to look at the results of the Holter Monitor I had worn for the whole previous months then he would have seen that every episode I recorded accompanied tachycardia (one as high as 220) but most in the 140-180 range and that my heart rate was all over the place while I wore that stupid monitor. It wasn't until at least 3 months later at a hematologist appt. to discuss my anemia did a doctor really show real concern and take me seriously. He told that whatever was wrong had nothing to do with my low ferritin levels.. He could see how labored I was to even talk to him. He listened to my heart, sitting (back then it would be normal sitting, not anymore and it was 78) then he had me walk around the hallway and I got back, breathing more labored, and HR was 156. Just about doubled... He started asking cardio questions and I told him all my tests had been normal- "Well, for my peace of mind I will just double check them." he said. EKG- normal. Echo- normal. Holter- he looked at me with this look I will never forget and told he he didn't know if it was normal or not but no one had EVER looked at it. Keep in mind, I'd had it done 4 months before! Sure enough, he opened it to find out that it certainly explained a lot. I think about that so often- this was a doctor I went to see for mild anemia. He didn't HAVE to go the extra mile but he did. He was so compassionate and really CARED about why I was feeling so sick, was so pale, losing weight, and fainting and so short of breath I could hardly talk. I had never seen him before or since but if it wasn't for him, who KNOWS how long I could have on with that lone anxiety DX and depression DX they were so eager to slap on me. I know I totally digressed from the ER topic (as I usually do- I'm so isolated every day and lonely- you guys are really the only ones I "talk" to every day lol).... But just the differences between how I was treated by the ER doctor who had access to the same info as the other but chose to write me off without listening to me.

Like I said, I work at this hospital and I know a lot of doctors, many are friends. They generally want to help but are under so much pressure that it makes it difficult. And there are a LOT of people like us who feel the same way about ER doctors and a lot of people NOT like us who abuse the ER system... So they can be just as skeptical about us as we are about them. Intellectually, I know this. I know most doctors do the best they can given the guidelines they have to work within- but it only takes one bad experience like many of us have described to make us feel that way. All I can is NOW IF I go I to the ER for staples, CT scan and concussion exam after syncope, I get the Princess Treatment. They LISTEN to everything I have to say now. Funny how that works after a doctor or doctors mistakes are discovered

Thanks Julie... I do have sitting up syncope, but it takes longer. My sitting limit is about 15 minutes or so I'd guess? Not sure how t would be if I was exercising. I do get up and sit several times a day. And like I said, it sounds so silly, but I crawl around a lot. We have three levels of stairs so I have to crawl or scoot to get around. I do get syncope crawling as well but since I don't have far to fall I don't worry too much about head trauma- except on the stairs- then I always have someone with me.

I try to spend at least 4-5 hours a day out of bed... But inevitably I will faint or BP plummets and I'm back in bed. I know I will never improve this way. Even the weeks I spent inpatient at Mayo they would not let me out of bed. I feel in the middle of a Catch 22.

They've yet to determine the cause of my autoimmune problem- I keep thinking maybe that will be the real key to the problems...

Thanks so much, Julie

Jen

Hi everyone... I have some questions about exercise. I just bought a recumbent bike but haven't used it yet (just git it yesterday) I know the research is clear that exercise is a definite requirement for recovery. But I'm at a loss at what to do and how to start.

I have autonomic dysfunction neuropathy- immune related. Just went through rejection of IVIG nfusions after the 5th of 12 led to anaphylaxis. When doctor ordered my blood work it showed that my very aggressive antibodies don't play nice at all and almost all my systems were affected. Most of my levels have gotten better except for my kidneys (still abnormal function ) an bladder which would make sense that they'd go together. Thyroid is hyper but only by TSH levels, T3 and T4 show hypo so not sure what's going on there. I also am on antibiotics because my labs showed a pretty high white blood cell count but not sure where the infection is? Also learned at Mayo that somewhere along the way my body has lost its ability to have a fever. Normal temp is 96-97 and doesn't go up ever to fight infection, no one knows why or how this happens but assuming that why the white count is still elevated.

Anyway- exercise. I do leg exercises twice a day and arm exercises twice a day with resistance bands. But how do I even begin cardio. I can't walk. My limit standing is about 45 seconds before syncope. If I'm lucky. I do get some exercise because I crawl around the house but even with crawling will occasionally get syncope. Standing HR before syncope is in the 160's or 170's. When I crawl it's about the same. Three times a day I do stand- with my hubby next to me- next to the bed and I don't allow myself to get to syncope but will sit when it's imminent (I can usually tell) or he will lie me down if I miss it. I know I need to be vertical but I've consistently stayed at those 30-45 seconds before it happens. I've had 7 concussions in recent months with some cognitive dysfunction now so I'm done taking further chances with my brain. I just can't. So how do I start an exercise program? Would I be safe on a recumbent bike, obviously starting slowly and gradually increasing? I know I NEED to do this or I won't get better but feel caught in a vicious circle. Further head trauma is NOT an option. What is the point of beating this if I can't communicate or think? I'm already devastated by the levels of cognitive function that I've lost and the changes I've seen in myself since the Post Concussive Disorder DX. But I can't live this way forever either. I feel trapped? Does ANYone have some advice for me on how to get started? By the way, after I left inpatient Mayo I did 2 weeks in acute rehab and they wouldn't even give me an out of bed exercise plan. But if I don't do something, I will be like this forever.

I'm just getting frustrated with the lack of help and answers for recovery for me. Anything anyone has to offer would be so appreciated. I have to start somewhere. Oh, and it's important to note that my rehab assessment showed very good muscle tone, strength and zero atrophy which you'd expect from someone in my state. I'm very hyper mobile (EDS) flexible and joints very prone to dislocation.

Thank you for any input. I'd appreciate it so much. Oh, and I'm a 37 year old female. Thank you, thank you and thank you!

Good job, Lemons! That's amazing!!!!! You should be proud!

Jen

My BP is always at its lowest in the morning. My numbers sound much like yours. I can't remember if you're on any BP meds, but I just make sure I drink a lot of Gatorade and have my meds before I get up- or like you I'd be falling to the floor. I can't tell you how many syncope episodes I've had getting out of bed first thing in the morning before I started that regimen. It still happens, but much less often- probably decreased by 50% or more at least.

If I were to just get out of bed immediately I would be unconscious on the floor every time. I am so ready or a cure for this! I hope you start feeling better. I know how awful it is to live like that. Glad you are getting some follow up!! Be very careful in the mornings so you don't hurt yourself!

Jen

I took Mestinon while inpatient at Mayo, They gradually increased my dose over three days and by the third day, when

I had my first full dose I immediately felt awful. I was in a cold clammy sweat, bad cramping, and by far the worst headache I'd ever had. I'm not sure why, but it also made me feel very emotional, angry and irritable. After about an hour, a nurse came in to do my orthostatics BPs- no wonder I had a headache- my BP was 190/140 and HR of 42. I felt like my head was going to explode. Keep in mind, my normal lying down BP is 90/70. She did the sitting up BP and it dropped to 140/100 HR 110 (I am guessing a little here because it's been over a month and I don't have my records handy) and standing went to 100/50 HR 180 or 190+, not quite sure. So I remained extremely orthostatic but not hypotensive and the nurse was so happy because I didn't faint. WHAT?.... I wish I would have because my brain would reset and I'd feel normal- this way I had all the pre-syncope symptoms but worse and no relief. I asked to see my doctor and like I said I was also angry and emotional on it as well... Not myself at all, and he tried to tell me he was pleased with the drugs effect. I was in shock, sobbing uncontrollably. I felt like a vessel was going to burst in my head, that is how my headache felt.. And my body is used to VERY low BP. Even on meds, sitting I'm at 70/50 HR 125.

My theory is that they had me on too many BP drugs, plus I was also receiving IVIG infusions, (take Midodrine and Florinef too) and that was just one too many. Maybe if was off the others it could work for me, but after the emotional reaction I had I don't think I'd try it again even if it sounds irrational. It scared me to death and the way I felt when my BP was that high is not an experience I ever want to go through again. That said, I've heard from many that it is their miracle drug and works wonders. It was highly recommended by m octors and even in my medical records states: Mestinon- discontinued against medical advice. So they felt it would have helped with other adjustments.

Jen

The only one I tried was Adderall and I was lucky enough to have it work right away so I didn't have to go through side effects or having to try different others and go through the trial process of any other drugs.

My oldest son was misdiagnosed with ADHD about 4 years ago and was prescribed Adderall. We knew pretty much immediately that it wasn't for him. He became aggressive and emotional. He could not sleep and went 2 nights without sleep. He would cry constantly (he was 10 at the time). His concentration and focus was worse than before.. After 3 days, we discontinued the medication.. Tried another ADHD med that had the same result. We took him back in to the child psychiatrist for answers. After a while, it became clear. He didn't have ADHD he was just in a difficult phase and had a personality conflict with his teacher. Now, he is fine. My point is, it is obvious quickly if the medication will work in our experience.

I noticed an immediate difference in my cognitive level, my concentration, and energy level. I want to make sure that I am clear that it does not improve my other autonomic neuropathy symptoms (low BP, tachycardia, syncope, etc). It doesn't change those either way. It doesn't raise my HR (it will with some though as well as BP). That is why I believe I was deficient in serotonin and dopamine and the combination of the two of those in the two drugs and my cognitive symptoms dramatically changed immediately as soon as I began the Adderall. I had already been on the Paxil alone and it wasn't until I tried the Addreall with it that my symptoms (cognitive like I said) went away. Prior to starting these drugs, I had an extreme anxiety problem. Had never had anxiety in my life and it seemed to develop overnight. It was an absolute nightmare. My doctor tried Ativan first which, for me, was awful. It seemed to go through my body so fast that I was almost constantly in withdrawal. Within two hours of taking it, I'd feel so anxious and shaky I couldn't function. Like I said, before this flare began in April I had never had anxiety and what a horrible feeling. I next tried Klonopin and Valium. After I started the combo of Paxil and Adderall- my anxiety improved and I no longer need an anxiety medication.

That's my experience. The relief from the anxiety has made a big difference in my life... And my ability to cope with my autonomic dysfunction neuropathy, auto immune deficiency and EDS. The only time I experience severe anxiety at this point is with adrenal surges which have lessened slightly but still get them far too often. If you have questions about how the ADD meds helped me specifically feel free to ask. I have lots of specifics. Be warned, however, they won't work for everyone and they do have serious side effects for many, and are habit forming. Many doctors are very against prescribing these drugs, especially when it is for POTS which is so poorly understood by most doctors. If you have a doctor who is willing to listen and try new things, especially for concentration and focusing issues.

Jen

Naomi,

I can't believe you were denied for Long Term Disability. Did you also have short term? I had an easier time getting the Long Term than the short term. It was quite ridiculous. I am still convinced they ended up approving so quickly because I was hospitalized at the time. And I had to write a "list" of all the things I couldn't do anymore. Once my short term was up after 12 weeks I was in the hospital again and they approved me easily. I still have to send in updates all the time. I sent an update while I was at Mayo with access to all my records ad a signed auth for them to get access to them. But they have me no problems. The ONLY thing that was a bit shocking to me I wasnt used to this, had never done anything like this before, they said I HAD to apply for Social Security Security in order to continue getting my benefits. They estimate how much I will get for SSI and will deduct that amount from my monthly check unless I get rejected. They seem positive I will get it right away... but I am not sure. The ONLY thing that is helpful with that is that I have an attorney at my disposal in case I do get denied.

I think the reason I think I got approved quickly is because I had received several concussions and I have 6 concussions and congnitive dysfunction on my testing. But it should not take THAT level of disabling content to qualify to LTD! Esecially a policy you pay for and you ARE disabled. Did you see one of their doctors or did they go clearly by your records? I am sure there is an appeal process and I think I would have your doctor write a detailed statement about WHY you can't work. So many doctors, especially doctors who spend most of their time deciphering maternity paperwork for LDT, have no understanding and because they don;t understand what Dysautomia entails they deny first clearly depeding that you will let it go or NOT appeal. I am sure if you do they will reconsider. They just probably don't even know what it means and how it can be disability.

GOOD LUCK and don't just let this go!!! This is one of the ways that they get away with this ridiculous behavior but they should not get away with it. You could even print out a lot of into from the Dinet.org website to how them how disabling it is. I am so sorry. Please let me know if you need any help. I JUST dealt with this a month or ago. If you don't mind me asking, who is your LDT company????

Thanks!!

Jen

Most of the time my body "resets" itself after about 10 minutes after syncope. I get syncope daily so I am quite used to this. After I faint, it takes me a few minutes to "come to" and become conscious entirely... then I am groggy, a little out of it, I think that I am almost in another world for a bit... but within 10 minutes I am usually back to normal. When I say "normal" I don't mean normal as in people without autonomic dysfunction, but normal as in if I lying down and not having any major symptoms.

I am normally okay until I am upright again. I am one of those people who happens to be in a flare that will cause syncope or near syncope almost every time I am upright at all. My standing limit is less than a minute.

Jen

SOOOOOO weird that you would bring this up.... Kind of odd... especially because the Mayo doctors said that I have had the autonomic dysfunction and autoimmune defieciency for my whole life- and I have had a few minor episodes over the years as well as certain symptoms ever since I can remember: syncope, low BP, skin discoloration and mottling, tachycardia, and many more.... and we have always had cats..

BUT... we rescued a cat from the shelter and THAT day I had my first (EVER) episode of shortness of breath and later that day syncope (first in a year or more becaues I had been symptom free for a awhile) and since then it has progressed to the absolute WORST flare that I can imagine. I was actually first DXed with adult onset asthma because I did so terribly on the breathing test and given an inhaler and inhaled steroids but I never felt that was the problem. I have NEVER had breathing problems in my entire life and it just didn't seem to go with many of my other symptoms (and I am NOT an autonomic dysfunction sufferer with Mast Cell issues or any allergy problems as far as I know) and we also had ANOTHER cat in the home at the same time. But this particular cat came into our home and THAT DAY all of my symptoms began with a big flare. It seems like it HAS to be a coincidence but it took me quite a bit of time to get the doctors OFF of the asthma bandwagon. That was in April of 2011 and by November 2011 I was in the hospital, 6 concussions later, multiple syncopal spells a day, organs beginning to fail and extremely sick. It doesn't seem logical to blame to cat and I have always just thought it was a coincidence but I thought I would comment because you did

The ONLY difference between this flare and others is that I had NEVER had shortness of breath in my LIFE and I was quite scared and shocked at the way it affected my life and still does. Even with all of my other issues I've had since birth apparently, breathing problems was never one of them until we got the cat. The cat is no longer with us (for a numer of reasons) but I STILL have the shortness of breath, the gasping for air, the chest pain.... so the symptoms didn't leave with the cat.

Interesting.. Don't know if its relevant, but interesting anyway. Thanks for bringing this up!

Jen

Hi... I don't really have an "App" but I have something called iHealth which hooks up to my iPhone which is pretty handy. It is a BP cuff that hooks up to my iPhone and takes my BP and HR and tracks it. The ONLY problem (which is pretty significant for me) is that it is not very sensitive to measuring lower blood pressures. It is great for higher blood pressures. But it has a really hard time detecting lower blood pressure. Anything below 60/40 can't be read correctly. It just gives me an error message and just said "BP unreadable" or something like that. But it is really cool because it tracks everything, both BP and HR and I think that it would be super helpful with someone with higher blood pressure. I will need to find something that will be more sensitive to lower blood pressures. If anyone is aware of anything that would be better for that, I would love to hear your ideas!!!

Thanks,

Jen

Hi Lilly... First of all... (((( HUGS ))))) It is hard enough to deal with this illness without having to deal with arguments with our significant others.

I began a thread last week about my hubby. Our issues are plenty...but mainly is he overreacts to EVERYTHING. Everything that happens, he is convinced I need to be hospitalized. I have a lot of syncope and therefore lots of times I've hit my head (on concussion 7) and he monitors every little thing I do. It drives me crazy a lot of the time. Am I drinking enough? Did I take my meds yet? Am I getting enough salt? You get the point. Also, I get the feeling that he already has me dead and buried and is convinced I won't survive this illness. He goes to the doctor appts. with me. He hears what I hear but at times he is so irrational. I want to get better more than anyone else but it makes it hard because I don't feel as much support from him as doom. I have been VERY sick lately. I just finished up with IVIG that ended badly in anaphylactic shock (didn't help that he was there to see that) so now we have to wait about 10 weeks to wait for it to leave my system. So now we wait until PlanB comes along and HOPE and PRAY that a better option is available.

Another thing he does is he is very critical of ANY time that I use researching my conditions or on forums. He thinks I am obsessing over my conditions and that just makes it worse. He doesn't get that it is the ONE thing I can do that makes me feel like I have some control or.... maybe not control but at least gaining some information and the more I learn the more empowered I feel. And I have learned 100X more from this forum and other sites than I have from any doctor or medical provider that I have ever met. I usually have to educate them! As many of you know, this condition can be very lonely, and it is helpful to be able to relate to others who can not only understand but empathize. I really hate the fact that you all have to feel the way I do... but it is nice to have someone to turn to when I have a new symptom or a bad day and have somewhere to go where people not only care, but understand. My husband is very critical of ANY time that I use online spent on studying or researching this condition/illness. He thinks I need to just leave it up to the doctors (yeah, because that is has worked out so well!!!) and that all it is doing is making me MORE anxious and upset and making obsess over a disease I can't control. I could see his point if that was all I did... but that isn't that case.

It can be very hard for us to deal with anyone who doesn't know how we feel. Because NO ONE knows how we feel. Even my husband, who is generally supportive, my family is very supportive as well as friends and even doctors for the most part... I still feel very alone and scared a lot of the time... because I live in a body that I do not trust and I never know what to expect from it from day to day. I never know if I will stay conscious from minute to minute. Not an easy way to live.

Jen

Mine seem to be much different than most of what I have been hearing from the above stories. Mine ALWAYS happen right before bed. Usually around midnight or so and so I am awake ALL night. I usually end up finally falling asleep around between 4am-6am in the morning. Being up all night with that adrenaline rushing through my veins is an absolute nightmare. And I still have to get up at a somewhat normal time (to take morning meds) so I am LUCKY to get four hours of sleep a night. I am not a napper, NEVER have been, so I am always tired. Always, always tired. Which, added with the normal exhaustion that goes along with this condition, doesn't help matters at all.

I really wish I could find something to help with this. It is wearing on me. I take Klonopin at night for anxiety but it isn't helping. I have also tried Xanax but didn't help at all. I have tried Benadryl but it didn't help counteract the adrenaline either. If anyone has a suggestion for SOME medication that has helped I would really appreciate the help. Thank you!!!

Jen

I was at inpatient at Mayo while I had my second TTT, QSART tests and a couple other autonomic tests. The issue of not taking my meds was never brought up. I had taken all the meds just 20 minutes before my tests began (Midodrine, Florinef, Klonopin, Adderall, Paxil, ) and I failed all tests miserably and actually had fainted within 30 seconds into my TTT. I was diagnosed with Adrengenic Autonomic Failure Neuropathy (possbily immune mediated but yet to be determined). But my symptoms were so severe at the time that I couldn't stand/walk at ALL and syncope was happening upon sitting so I don't think they wanted me off any of my drugs- but I have heard several times that when you have these tests it is ideal to be OFF any drugs that treat autonomic symptoms so you can get a true reading of your actual symptoms. Just be SURE that you go over this with your doctor/s before stopping any medications to make sure it is safe to do so.

I know we all really hate to say we want to get the "worst" results possible but really what we want are "accurate" results.... and we don't want drugs that treat our symptoms successfully briefly throughout the day to give us a false reading and ruin our chance at getting the diagnosis we really need to move forward. Good luck to you and like I said, just be sure to make sure you check with a doctor before stopping ANY drug because your safety is more important than any test result. ((((HUGS)))) I know how much can be riding on these tests and how stressful it can be. I had the same fear before I began mine...... "OMG.. I JUST took my meds! Everything is going to come out normal and all of this will be for nothing!!!!" And as we all know, our symptoms vary from day to day too.... When my husband took me over to Mayo to the ER for Emergency Admit because I had signs of organ failure and my Cardio had called him and told him to get me there immediately based on some test results and labs he had just gotten back- I was sent to triage for my initial vitals. I was sitting in a wheelchair which usually still makes me symptomatic. My BP was 118/80 and my HR was 89. I could have DIED! My BP is NEVER that normal nor is my HR, drugs or NO drugs!!!! Yet here I am at Mayo waiting to be admitted as an EMERGENCY admission with perfectly normal vitals. They wheeled me back over to my hubby and I looked at him and told him and I thought he was going to strangle me. I was VERY much against going to Mayo (long story, but I fought a LOT of this process all along the way and was in a lot of denial, and had a bit of a tantrum about having to go get admitted ) and he looked at me like I had put some voo-doo curse on myself to get out of getting admitted. Anyway, by the time I got into the ER my meds had worn off, vitals returned to my very abnormal normal and had syncope 5 times in the ER... but what I am trying to say is that above all things our bodies are not predictable.

Keep us posted, Hun. You've been through so much. I am thinking and praying for you.

Jen

I am so happy to hear how well this is working out for you so far!!!!! Pray Day 4 is just as successful and you can continue on this road to recovery! It also gives so many others hope that maybe there is an answer for many with this chronic condition! I've been keeping you in my thoughts!!!

I can't believe how much you are getting done throughout the day! That is amazing. I am glad to hear that you are stopping and resting when you need to as well. How accomplished you must feel to get those things done. I can't even imagine. I can't even stand for more than 1 min. without syncope. Just make sure you don't overdo it and take time to do some fun things to!!!!!! You've handled this great and deserve it!

Please keep us posted. I really enjoy reading your progress and success, especially after the complete epic failure of my IVIG attempt. It gives me hope!!!!!

Jen

I was very upset by the way they dismissed my fears about EDS.. especially when BOTH my daughter (13) and I have both been diagnosed with unspecified "connective tissue disease"- her at 12 months old me just recently at Mayo. Just from my own testing at home with her, she meets all of the joint criteria. So did I at Mayo. Some other factors I brought up: (for myself)

*VERY hypermobile/hyerextendable joints- when I was 13 I slightly twisted my leg and completely severed ALL four ligaments in my left knee (took 8 surgeries to fix!!) I also currently have 3 torn ligaments in the other knee. Both of these knees have dislocated numerous times. My shoulders have both dislocated. Elbow once.

* Bruise easily/ soft kind of white skin- even the genetic doctor commented on how "velvety" smooth my skin was... "Why thank you, my dear "

*I have ALWAYS had severe pain in my joints and my body in general. I don't ever remember not being in pain. In fact, when the doctor asked me to tell her the last time I was pain free and healthy... I honestly couldn't remember. How sad is that? I don't think I EVER have been. Even as a young kid, I remember my whole body just aching.

*Lots of fatigue and just lots of feeling tired. For as long as I can remember

*I have really stretchy skin- you can pull it pretty far

* Vision problems which have gotten much worse lately- original topic for thread actually

*13 year dx with Connective Tissue Disorder at 12 months- late sitter and walker- since age 11 has had 5 syncope spells

*Early arthritis

*Small fiber neuropathy

These are not all of the symptoms I have... but the ones that I can think of off the top of my head. I have a feeling it IS EDS, especially with my autonomic issues when OTHER major medical centers will connect the two disorders together. I have a daughter with very similar symptoms who is already having severe fatigue, muscle fatigue and syncope at 13 years old. I was so frustrated to be just dismissed as silly by Mayo by not recognizing the connection. I even had one of the doctors check the stability of my joints and while he was checking my knees he actually dislocated it. I tried to explain the connection between joints, collagen, ligaments (which I have had MANY torn in my life) and vessels/veins. Not to mention my paternal grandmother and great grandfather BOTH died of a burst blood vessel in their brains.

I guess I somehow got off the subject of eyesight, but it sounds like there may be a consensus that IF I did have EDS or a "Connective Tissue Disease" it could affect my eyesight because so much of the eye is made of collagen.

Thank you all so much for the insight!!!

Jen

Arizona Girl,

You are so informed... I sure wish I would have had access to your brain before I made my decision. All I know is that I was told it was such a benign product and there was nothing to worry about. I was so sick at the time that I can hardly remember the conversations so I definitely wasn't informed enough (my own fault- but we have six children and hubby had to be home). I should have asked for a patient advocate.

I don't have my records handy right now but I am almost positive that my IVIG treatment was Gammaplex. I had 5 initial treatments in the hospital which didn't have serious side effects ( bad, bad headache, very achy body, HIGH BP- especially for me because I am usually very low- but it got to be over 180 or 190/something. The second morning at Mayo I woke up with a horrible herpes break out on both lips, face and near my nose. Never had a fever ( but was discovered during autonomic testing that my body is incapable of having a fever- not good for infections). Each day I felt a little worse and I did have red, swollen legs but no blood clots ever detected. By the time I was discharged to my home hospital I had two more treatments. First one, had pretty much the same symptoms but BP was higher, achiness worse, cold sores worse, headache worse and that night I developed hives. But they also put me on a new med and thought the hives were from that. It was the second IVIG at home hospital (discharged by this time so done outpatient- thankfully with a nurse who knew what she was doing!!!!) This time I had effects must faster, face turned beet red, trouble breathing, lips swelling, and then she said I was anaphylaxing and stopped treatment. They sent me to an allergist who said that he didn't think that IVIG for autonomic issues was responsible (just his opinion- probably doesn't like Mayo and said its not FDA approved for such treatment and studies don't show that it is very successful.. okay then) and he said they wouldn't be giving it to me again even with a different brand.

Finally got to talk to my doctor in Mayo and he said that, yes, definitely can't be taking IVIG and will have to wait 10 weeks until it is out of my system. I have been VERY sick though since. He ordered some blood work last week and it showed that a lot of my labs were abnormal. Hemoglobin, red blood cells, hematocrit,(all too low and down by quite a big change) kidney function abnormal, white blood cells very high and other labs abnormal but I can't remember them all. I have had problems with LOTS of urinary retention and swelling since so I am little worried about my kidney functions. I am supposed to go in tomorrow and get some labs done to see where everything is now. I have been vomiting a lot over the last few days so I am just hoping that is my body trying to get it out of its system. I really hope I am NOT sick for the whole 10 weeks!!!! As it is, none of my autonomic dysfunction/failure neuropathy has improved at all. Still have horrible OH (BP when I wake up is 60/40)... sitting and standing is not even a possibility at this point. Because of 6 concussions in just a few months I have to be VERY careful about hitting my head. I try to stand a few times a day, with someone right by me, just to get some upright posture, but I am usually in syncope in under a minute. Initial cognitive assessment showed quite a bit of dysfunction (well, not horrible, but speech, ability to recall words, retention, memory) but this was a quick assessment- have a more thorough one in March after I have a chance to heal. And still have this undefined auto immune disease which I have no idea what it is or means. AND Diagnosed with a "connective tissue disorder" that is "probably" Ehlers Danlos but she didn't want to push that (the genetic counselor) because it could sent the doctor down the "wrong track"...Made NO sense to me. IF I have something, then diagnose it, right??? If I don't, then dont??? I am also diagnosed with Fibromyalgia... what's the difference???? I argued with her but she just wouldn't budge so I am seeking a second opinion about that...

Mayo neuro tells me when I go back in March they will have Plan B for me..... but he is very hesitant to try any immune therapy. I just don't know what to do at this point. I feel like I took 10 giant steps backward but at least I have a DX (or several I guess). But I am hanging in there. Trying to stay positive and count my blessings every day. Thank you for all of your help!!!

Jen