bustersacc11

Half-life is the chemical breakdown of a drug. How it is metabolized and eliminated. Methyldopa’s half-life is 2 hours. For example, you take 250mg of Methyldopa at 9pm. By 11pm half of the drug is metabolized to 125mg. By 1am 62.5mg. 3am 31.25mg and so on until it is eliminated from your body. Kitt what is important that while we keep taking Methyldopa, and it is being metabolized and excreted the BP effects of the drug are still working. We are trying to achieve a steady effect and normalize our blood pressures. Please, keep in mind that I am sharing with you a very small snap shot of pharmalogy. There is a lot more to this. I am far from an expert. The peak level is the highest concentration of the drug in the blood. Meaning, with Methyldopa the maximum decrease in blood pressure occurs four to six hours after you take it. Which for you based on your times appears to be around 3 to 4am. Then, onset of action is the time required after taking the drug for a response to be observed. What this means is once an effective dosage level is attained, a smooth blood pressure response will occur in about 12 to 24 hours. For me, one pill a day doesn’t work. An effective response doesn’t last 24 hours for me but usually a part of the day so that’s why I take it twice a day. To get that 24 hour response. Further, it may explain why you feel revved up during the day and full of adrenaline. You may have not achieved that effective dosage level to have a smooth BP response. I don’t know if I would take both Methyldopa and Clonidine. They are the same drugs. If you tolerate Methyldopa, maybe talk to your Dr about adding another dose during the day. It is not uncommon for some people to take it three times a day. Lastly, duration of action is the amount of time that a measurable drug effect persists. Meaning, if you stopped taking Methyldopa after an effective dosage level was attained, a withdrawal will occur, and it takes about 24 to 48 hours to return to our crappy selves. Yes, it does add to my fatigue and lightheadedness. Some days are worse than others. That has been the trade off the past four years. Stopped the surges but hasn’t helped my other symptoms, worsen some, or improved the quality of my life. That’s why I was hoping Cozaar would have worked. For normal people out there with HTN, there is a reason why millions of people take drugs like Cozaar to treat high blood pressure and no longer take Methyldopa. Yes, they have found different ways to address and tackle high blood pressure BUT it has way less side effects. If this didn't help clarify things, let me know via PM.

That is a great suggestion. I am going to look into that.

While I am experiencing my hyperadrenergic surge, I am doing it while being able to breath through both nostrils! It may nearly kill me but at least my nose isn't runny anymore! What a day. Lesson learned for the millionth time. I never learn. At the end, I know my body. The docs voice is only a recommendation. I knew better and should have listen to myself. They minimize everything and I bought into it. I am kicking my own **** around the house right now.

I have been battling a viral illness for awhile now. Since antibiotics are not an option, I was desperate for some relief. My PCP's partner who is covering recommended Afrin Nasal Spray. I explained to him my reservations about the effect it may have on my dysautonomia. Oh no... he tells me. There should be no effect. It may increase your BP by a few points tops. It is topical and very little gets into the blood stream. Today, I tried it and within seconds I said, "here we go... another trip to the ER." I did one spray in one nostril instead of the 2 sprays in each nostril to see its effect. Well, my BP went from 108/71, HR 60 to 158/90, HR 106. Chest pain, gittery, heart pounding. Quickly used my neti-pot, started blowing my nose. What a mess. I thought it was going to escalate into a full-blown attack. Really..now I have to add Afrin nasal spray to my long list of things that I don't tolerate. Whats scary is if I ever need epinephrine for an emergency or surgery nobody is going to understand how sensitive I am to anything and standard doses could really kill me. Just venting. Scary moment and frustrated. Right now, I am still amp up I can't even lay down.

Elizabeth: Thanks for the articles. There is something to be said for the drugs that we experiment with and the path it takes us down. Years ago I had the radionuclide study done at CC. Results were normal blood volume but marked venous pooling was noted. I tried TED hose, abd binder, etc. Nothing worked. Specifically, when I tried licking the stick with Midodrine I had very high blood pressure spikes and the adrenaline flood gates were opened. I had to quickly abandon that option. Anything that triggers or mimics adrenaline sends me into a tail-spin. Is the excess norepi in my blood stream disrupting communications and causing my symptoms a partial dysautonomia, BF, or something else. I have never been able to pin them down to give me a conclusive dx. This has been going on for 5 years. Your point about differential diagnostics sounds like a chronotropic incompetence effect. I doesn’t sound like it applies to me either.

Ramakentesh: What my brain was telling me to type doesn’t always come out as planned. Clarify my sentence. Yes, that is correct about Clonidine. Vandy doc’s point with my case, while the two drugs reduce activation of alpha and beta receptors Methyldopa provides steadier effects and less side effects versus Clonidine from their experiences. Absolutely correct about Ang.II. The RAS moderates sympathetic tone not only by acting on the CNS, or by increasing the release of catecholamines from the adrenal medulla, but also by a local effect on sympathetic nerve endings in the tissue. You can understand why I was very excited about taking Cozaar. I really thought this will work. Control BP, suppress BP spikes, and reduce plasma norepi levels so I won’t have that feeling of adrenaline overload with minimal side effects. Didn’t work. STINKS! I do not have POTS. Never have. Slow HR with PM. I guess while central hyperadrenergic POTS is less common and more complicated my case is probably even less common and equally complex. I fall into the hyperadrenergic subgroup partly based on my catecholamine levels. That’s why I appreciated Elizabeth’s topic. Since I don’t have central hyperadrenergic POTS (even though it appears they have some BF impairment) I was back speculating if I have baroreflex failure. Nevertheless, I thought I should have seen better results with my catecholamine blood levels taking Methyldopa and Cozaar. I changed my focus while taking Methyldopa and Cozaar and told myself catecholamine levels are not predictors of how well treatment is going; rather, how do I feel. Well, catecholamine levels are still high and I feel like crap.

Hey Kitt! You are correct the half-life of Methyldopa is 1.7hrs. Also, which is important to consider is the time action/profile (antihypertensive effect) of the medication. For example, Methyldopa onset 12-24h, peak 4-6h, and duration 24-48h. Versus Clonidine’s half-life is 12-20hrs. The action/profile shows onset 30-60min, peak 2-4h, and duration 8h. Notice that the drug’s effect and its blood concentrations (half-life) are not always perfectly correlated. It takes somewhere between 5 and 6 half-lives for a medication to reach steady state. Medications with short half-lives (like Methyldopa) reach steady state relatively quickly, but takes a little bit for the ant-HTN effect to peak, while those with long half-lives (like Clonidine) take a long time to reach steady state but its effect is pretty quick. Bit of a difference. Just making you aware as a forum friend when you take Methyldopa. I understand it works for you and I am glad you are getting rest. Just be careful stacking those doses close together. I am just running scared. Could I go back to Vandy? Yes. I am in communication with them about my case quite often. They are awesome. Sometimes you need another set of eyes on your case from time to time. I have learned over the years each facility does things a little different. This year I have decided to go back to Mayo. In fact, my Vandy Dr. was not opposed to it and said he never discourages other’s opinion. It was said with professionalism and class. No egos hurt. Without hestitation Dr. Feeley agreed to see me again and recommended that I come off everything beforehand. UH!!

One article that you attached and others that I reviewed discuss treating with sympatholytics will reduce serum norepinephrine levels for those dx with BF. So, the violent BP surges and hyperadrenergic symptoms should be suppressed. I get it. I have been taking Methyldopa for 4 years. While the BP has been controlled and surges decreased the side effects are awful and my quality of life is poor. My catecholamine levels still remain high even with treatment (>600). Recently, I asked my docs about switching to Clonidine and they told me that since Methyldopa and clonidine are in the same class of drugs and both have similar effects of reducing sympathetic tone and would have similar side effects they prefer that I stay on Methyldopa and have found methyldopa to provide more steady effects and that the advantage of methyldopa is that it reduces activation of both alpha and beta receptors. Last month, after 4 years I asked about switching BP med to Cozaar. Autonomic Dr was not opposed to me trying Cozaar. Not sure it will help but told me to try it and if feels like it is working to taper off Methyldopa. Cozaar is a angiotensin II blocker. Angiotensin II stimulates the release of both norepinephrine and epinephrine into the blood stream. By taking a angiotensin II blocker findings have suggested, specifically cozaar, has been helpful with the prevention of chronic or intermittent sympathetic hyperactivity. Further, cozaar has shown to decrease plasma levels of norepi. When I weened off Methyldopa and was only on Cozaar I felt horrible. While my blood pressures were controlled and no surges, I felt full of adrenaline. I abandoned my experiment but am taking both Methyldopa and Cozaar right now. It is a effort to achieve some sort of balance with improving my symptoms and BP with minimal side effects. Last week, I had my catecholamines checked per my request and my standing norepi still high. Came back above 700. I am so lost. Really, I have no other ideas left when it comes to experimenting with treatments to get symptoms relief .

RBBB - The impulse (that makes the heart contract) travels from the atria (top chamber of the heart) down AV node continues to ventricles. Somewhere for some reason in the right ventricle the rate is slowed down. If you have a copy of your ECG the right bundle branch block appears like a set of "rabbit ears" at the R wave on an ECG. It is not serious or life threatening. I doubt RBBB is POTS related. You mention single (unifocal) PVC's. PVC's while very annoying are benign rhythm. EP docs are not incline to start treatment for single PVC's. I think I shared this before and the research is out there even with heart disease single PVC do not lead to sudden cardiac death and dangerous rhythms. Yes, there is a possibility of experiencing PVCs for dysautonomia patients. Especially, if the dysautonomia patient has high adrenaline levels or triggers that can cause adrenaline flood gates to open. Left atrial enlargement will appear at lead II on the ECG sort of like the rabbit ears that I explained for RBBB. It is more of a bifurcated appearance at the P wave. You mentioned hx. AFIB. Atrial enlargement can be a precursor to AFIB. There is SOOO many different heart rhythms out there and when you don't see normal sinus rhythm we think what is wrong with my heart. When actually there is a lot of rhythms that have no effect on the heart at all. When it is a change from normal sinus rhythm we expect for it to be picked up on a test, looked at by a dr, and addressed to us whether serious or not. Sorry that was not communicated to you. I think when you get your echo results that will help clarify if any of your rhythm issues are structurally or mechanically related to your heart.

I have hyperadrenergic dysautonomia per vandy. Vandy dr told me that my clinical picture similar to baroreflex failure but I don't have BF. That was back in 2009. I didn't think of asking them why not. Also, I only had 30 min to ask a million life questions. My next set of autonomic testing coming in may i will be revisiting this issue with them because i feel there is a component of BF to my case. If they say no to BF than I will be asking for an explanation. I get so confused because they all overlap in features and symptoms. I mean there is partial dysautonomia, hyperadrenergic dysautonomia, hyperadrenergic POTS, pseudopheochromocytoma, pheochromocytoma, labile essential hypertension, baroreflex failure, etc. I don't know what is that official characteristic that differentiates the two. Elizabeth, I have a question. If you can recall the source, where did you find or hear about a characteristic feature of BF is hypersensitivity to clonidine? Second, I think this topic would be a great Q /A for one of the docs to answer on the next newsletter. How do you get this question to the right person to possibly look at getting it reviewed.

I had the same problem with approval for TTT when I went to CC back in 2008. What made a difference for me when getting it approved was when they coded it (icd9) syncope even though I have never passed out. Had 3 TTT worked every time. If it is coded lightheadedness they see the test as experimental. LOL! Of course, we all have our best days when seeing our doctors!

If your BP are that high off meds, I agree and don't think it is safe to have numbers that high 180/110's for you to travel off meds. If you want to be off meds for your testing maybe get to Cleveland a couple days earlier and ween off in Cleveland versus being off meds and then traveling. Stay as close to the CC as possible, or if a little away make sure shuttle service is available to the front door of CC. See if CC concierge service has wheelchair services to bring you from appt to appt. CC is pretty big and walking can be tiring. Rooms at your hotel maybe ask for a first floor room that is handicap accessible to make things easier for you. Make sure you get CC patient rate and they should have wheelchairs if you need help getting from your car to your room. For me, I am going to Rochester that Sunday AM. My first test is on Tues. So, I will have a good 48 hours of the meds being out of my system. I am going to do those things for myself that I outlined above, if needed. I am in the same boat as you. My BP are pretty high off meds and I don't need an event mid-air. I cannot speak to your question of how I managed my situation with traveling and coming off meds from past experience. I can share what I am going to try to do with getting to the Mayo and being off meds prior to testing and how I will handle my situaion during the week.

I just discussed this issue for my upcoming appt at the Mayo in May. Recommended that I come off all blood pressure meds 48 hours before testing. One of my meds I will need to ween off slowly. Those two weeks in May should be very interesting for me. I have had testing off meds and on meds. I see both positions. I guess it would be more patient specific whether it matters if they are on meds or not. For me, the meds I take are treating my high blood pressure, very little with symptoms, and definitely not treating the underlying cause. If I am going to travel and spend the time and money for hopefully an extensive evaluation I want them to see me not just on a bad days while on meds but totally at my worst. Maybe something new will show or getting worse that wouldn't have showed up because I was on meds. Who knows. My frustration with this whole dysautonomia is when it comes to my health issues we have no tests set up on a yearly basis to monitor the progression of a disease that we don't even know I have. I am getting worse and I know it and in a way I hope something shows up but it has been going on for so long if they find something it is probably so rare and not treatable do I really want to know. I revisit my case with these centers with little hope of a cause; rather, if there is an opportunity to try a new med that could possibly improve the quality of my life. Good luck at the CC. Hope you have a great experience and get some answers.

I understand as the days go by when we feel things should be getting done but are not can be frustrating. Especially, when we feel so ill. We want to be treated and feel better. These scheduled appts cannot get here fast enough. Time goes so slow. Only thing I can think of is if you have a primary care doctor, can you talk to them about your concerns. Maybe they can get you in a little quicker by having a physician talking to another physician about your case. From my experience with ER's, they were not going to admit me unless they could not get my emergency issues stable or if stabilized required some sort of extended observation or treatment. Otherwise, I was discharged to follow up with my primary dr.

I have battled high cholesterol since my 20's. Mid 30's tried a couple of statins but I had terrible side effects. I have been watching my diet for some time with some benefit but not where I would like to be. Exercise is hard because of dysautonomia. Go figure. I saw on CNN Dr. Caldwell Esselstyn (Cleveland Clinic) and he was promoting his book Prevent and Reverse Heart Disease. His book has real life stories, educational / research info about the food we eat, and tons of recipes, and websites to help with finding health foods and recipes. He refers to the China Study and Dr Campbell in his book. I tried Dr Esselstyn recommendations from Sept 2012 to Dec 2012 and was able for the first time get my total Chol from 213 to 178, LDL 155 to 118. I want my LDL under 100. Chances of heart attack with LDL under 70 or 80 and total chol 150 is almost zero. That would be wondeful but doubtful. Also, I do cheat. I like fish, chicken, and an occassional hamburger. Dr. Esselstyn recommends not to eat any food that has a mother. Stuck with fruits, vegs, grains, nuts. It is tough. I bought the China Study book over the holidays. I get a couple of chapters into it and put it down. For me, it is not exactly fun reading. I will eventually get to the end.

I am currently on disability after a year long process. I tried holding on to a mindless task job behind a desk and couldn't do it. The dizziness, brain fog, fatigue was unbearable. Many people on disability we have all tried over and over to hold onto to some sort of work. I know that I have tried over and over again but not for reasons about SSDI is hard to get. Going on disability we are stereotyped sometimes as being lazy, don't want to work, or "you can't do anything." When disabled hits you in the face, I felt like I let everyone down. My wife, my family, and my 3 year old daughter. For me, when I came to terms that I could not hold onto a job I lost a piece of who I was. All my formal education, my work experience, and self confidence...gone. For me personally, I was not thinking SSDI is risky. I didn't want to apply because then I was giving in to the fight. I didn't want to lose and wanted to so badly keeping fighting but I couldn't do it. To this day, I feel humiliated that I am on disability and lost when people ask me what do you do for a leaving. My discussions with people on disability you are banking so much on getting approved but you also feel a sense of this is what is left of my life. Disappointed is an understatment; yet, you are desperately needing some cash flow and insurance. That is the reality whether I like or not. When it comes to SSDI it is easy for people to say what they would do until it totally hits them and the reality is SSDI is all you have left as an option. It is easy for me to say what I would do in this case or particular situation but unless I can truly empathize I really can't relate. God willing if that day should ever come and I am well enough to work, even though I still have dysautonomia, I will explain my gap in employment with honesty. Probably won't work in today's competitive environment. Everyone is looking for that slight advantage. What would I really have to lose. Bigger point, is if I am well enough to work then I am probably feeling somewhat better. If I have more energy and less symptoms than I would be excited because it would allow me to do more with my family and going back to work would just be a bonus! Great topic! All those still able to work in some capacity, while managing dysautonomia, I think that is awesome!!! I truly value all different positions from topics on this forum. Just want to share from a different perspective.

I am not the sharpest pencil in the pencil box but I would like to try to help you in this case. I have a pacemaker for a slow heart rate and we thought it may help my dysautonomia but it really didn't. Have had multiple holters, event monitors, etc. Also, I experience those annoying PVCs, and bursts of PVC's. For me, they are like hard thuds in my chest. Take my breath away. Unfortunately, I just deal with them. Further, I do not have POTS. Learning from this site, and other references there seems to be that debate whether or not the tachycardia is a compensatory response and responding to our bodies needs (i.e marked venous pooling). The high heart rates cardiac in origin doesn't seem to be the case; rather, an altered autonomic nervous system. I may be wrong. However, It makes sense that patients should be reluctant when considering cardiac ablation for inappropriate sinus tachycardia, or sinus tachycardia, or SVT with dysautonomia. It appears not to be the source of where symptoms are coming from. If you start knocking out electrical pathways, or altering the SA or AV node than you are messing with things that didn't need to be messed with. Left where you started. But if the origin of the rhythm comes from the SA node, AV node, or ventricles and it causes a person severe symptoms than I think ablation makes sense. Even then comes risk if they don't do it right. For example, if they knock a patients SA node for IST. Now, the patient becomes pacemaker dependent and with a whole different set of issues. You mentioned PVC's - while annoying they are benign arrhythmia. EP research has shown that it would take 20% of your rhythm or 20,000 PVCs per day to develop cardiac myopathy (over a period of time). That is a whole lot of PVCs! If you are having what you feel like are runs of V-tach often (greater than 5 PVCs in a row) than I would consider discussing this my cardio and either get some reasssurance that everything is OK or revisit tx. options. I just wonder if you are feeling runs of PACs that are similar to what you are feeling when experiencing PVCs. Ultimately, you know best. PACs and SVT are not life threatening. Just really annoying. Those fast rates arising from the AV node do not all pass through to the ventricles so your pumping action in the ventricles is protected when having those burst of SVT. This is a good thing! Which is helpful is differentiating btw v-tach and svt. I know you feel lousy. Just trying to offer some kind words of reassurance that PACs, PVC, and SVT stink but not life threatening. I see you are in a bit of a quandary. You have low blood pressure so treating these annoying rhythms with medications would be challenging and bit risky. I understand why you are inquiring about ablations. Lastly, I will relate it back to my case is the rhythm causing your symptoms cardiac in origin? Than it makes sense to reconsider an ablation. However, like my case putting in a pacemaker to speed up my rate did not help improve my quality of life. Now, I know the slow heart rate is not from sick sinus syndrome rather an altered autonomic nervous system that generates slow rates for me. If I had true symptomatic sinus bradycardia, got the pacemaker, I should be on my way. That wasn't the case. An ablation for PACs, PVCs, and SVT. Thats a tough call but I get it. Unless the numbers were out of sight. Maybe. Risk of knocking out an electrical pathway that didn't need to be or damaging my SA or AV node not to have symptom relief and possibly continue to have the same annoying rhythms would be weighing heavily on my mind. On the other hand, for AFIB and runs of PVCs or bouts of VTACH...yes, I would explore that option if meds were not an option due to the long term risks associated with untreated AFIB and VTACH. I am a member of the pacemakerclub.com. I was surprised but there are a lot of people with NCS, dysautonomia, etc that have pacemakers. Doing a search on ablations and you will find tons of info. There is one guy, name is Electric Frank, who is our "yoda" on the forum that is awesome for answering questions. He has an engineering background and thinks totally like an engineer. There are a lot of very nice people on that site that might be able to speak from their experience with having an ablation that may be of some benefit. Keep in my mind, it is a pacemaker site and these people have all ended up with PM. Keep things into perspective that you are dealing with some unfortunate cases. Sorry for the long winded response. Your topic was a good one! Just got caught up in it.

I was thinking about a BNP. Simple blood test that is 95% accurate in detecting heart failure. Not that you have HF but BNP level could indicate the right side of your heart is stressed from the high PA pressures. If your thinking is pul. Htn. Other test would have to be done to confirm a dx but it is a simple blood test that is an important value.

Saying you had a rough day would be an understatement. Very sorry. I remember from school a normal heart silhouette should be less than half chest capacity. Wish I could help but I don't know if it is normal or not. I know that doesn't help much. do you have an interpretation by the radiologist of your ct scan of your chest. Or can you get one? Even though they may have been looking for a PE they should have viewed your heart also for any abnormalities. I hope. If you don't feel any better today or feel faint again can you call your family dr or their on call service to seek direction. Hang in there. Keep us posted.

If you can tolerate it a simple orthostatic challenge test done by vandy is supine BP after 15 min. Then standing BP at 3min, 5, and 10. Like it was mentioned above sometimes it takes our ANS a few min to balance out. You might find out either things level out or not. The metoprolol should have a steady effect in about 3 to 5 days. If it is XL the 25mg is a pretty standard dose to start off with.

I would call Monday and share your data along with symptoms. How long have you been on the new BB? I see your taking Midodrine. Do you think that may be causing some of your orthostatic hypertension? Did your dr prescribe BB for rate control or to act as a anti hypertensive? I know that is a miserable and scary feeling. Hang in there.

I looked into the mortgage disability insurance. It ended up being very close to the same process of applying for term or whole life insurance. From my experience they wanted me and my doctor to answer a medical assessment form. Since I was declined in two shakes of a lamb's tail for term insurance, I said why even bother. Once they hear dysautonomia and want records from all my docs at all the different medical centers. They want low risk and profit. Not high risk and have to pay out. I hope you get it. If you do hold onto it! Also, Orthohypo that is a great point about independent doctors that work for the state reviewing medical cases for people wanting disability. Let me add something. State doctors are mostly reviewing your medical records to determine if you are able to perform any "gainful" employment. It is the "gainful" employment part that is very gray and tricky. I will use you as an example. They may say while you can't teach at a University level anymore, you can work as an educator in some sort of lesser capacity that would work around some of your issues. Hope that makes sesne. The State doctor's physical exam is not extensive, nor does it involve a bunch of testing. Rather it’s your personal doctor’s and hospital medical records, not opinion, that are important in getting approved. So, if your doctor does not support your disability claim, approval will be very difficult. Anyone out there needs to make sure your doctor is willing to support and assist you before you start the process. Most people get turned down because they don't understand the process. A good lawyer should be able to help with that piece. These lawyers all get paid the same. $6000 per case. So, if you are awarded disability they get paid $6000, which usually comes out of your back award. If denied, they get nothing.

Racer, trying to strike a balance with continuing to work while managing your symptoms is SO HARD! I applaud your efforts. I have been unable to work. It will be 5 years this July. I can only suggest read over the advice given from others on ways they have managed their workload. See what you can try out that might work for you. Whether it be a stay home job, if you qualify get FMLA, etc. It is totally up to you, however; I do disagree with not pushing the disability issue. If you do not qualify for SS disability than I assume two things. You have not earned enough work credits over your work history or you have applied and been denied at all 4 levels (Federal Court). However, there is another disability program that is based upon need. You may want to look into that. It might not be what you are making now but I don’t know anyone that would say disability pay is enough for me and meets my needs. It comes down to sometimes when you don’t have cash flow coming in because you are not well enough to work anything is better than nothing. You will find most people on disability whether it is physical, mental, emotional, developmental, etc want to work. Many are not bedridden. Reality is they approve people quicker that are incapacitated or bedridden because they know their life span is probably short and they won’t have to pay benefits to them for decades. But for those that need disability it can provide you a monthly check (not much, but something). Also, eligible for medical insurance (Medicare). It is something. If you have kids. They will get a monthly check up to the age of 18. Survivor benefit. Also, you can still work as long as your gross income is less than $1000/month. Further, what life is going to be like for any of us down the road in so many ways is unpredictable. Related to work and this topic, there are programs out there to help people with disabilities transition back into the workforce. Especially, for individuals that have been away from the workplace for a while. Your skill sets never go away. Maybe a little rusty. Just have to find something to put those skill sets back to work. Work ethics are part of our genetic makeup. God willing I am able to work some day and that question came up why have you not worked for “x” amount of years. It will be a tough sell but it is totally doable. People make lifestyle and career changes all the time. Stay at home moms go back to work after years out of the workforce and hold important positions. We are a unique group of people. We are survivors. We live each day just trying not to let those monster symptoms get the best of us. Maybe it would be worthwhile to revisit with a disability attorney your options if you are really having a tough time working due to your illness. For now. Things can change for the better down road and I hope that is the case for you.

You are doing the best you can. If taking it immediately is all you can do because you feel worse than at least it is something. Do you take your blood pressure when taking hr measurements. I will share with you the few times I went to vandy I would get a sheet from them asking for me to capture my vitals. Simple orthostatic challenge test. They wanted me to write my blood pressure and hr down after lying for 10 minutes, then at 1 min of standing, 3 minutes, and then 10 minutes.

I understand your frustration. Your trying to collect data that correlates with how you feel along with numbers to support it. Have you suggested an event monitor. Different than holter. You would have to hit a button during times you are symptomatic. You would wear it anywhere from 3 to 6 weeks. You can collect a lot of data that way. Or push for another holter. There are holters that you can wear for 48-72 hours. Also, you mentioned that you passed out. What would be important to me in your case is what did my rate and rhythm look like just before, at the time, and during recovery when I passed out. Important to separate whether its cardiac or neuro causing your passing out. Is your rate and rhythm changing that is causing you to pass out or is it your low blood pressure dropping further down. You capture that it is an issue for you. I hate it when things malfunction for me at home and everywhere else but when I go to the dr or have a test done it won't replicate itself. Good luck. Keep us posted.