arizona girl

Ash, I edited my post, you might want to reread it. You have a good night to.

Welcome to the forum, so glad you found us. You are not alone in your feelings, I think most of us here have been through similar situations of not being heard or understood and comforted. The best medicine for most of us was the validation of finally being diagnosed. No we are not crazy or depressed, there is something functionally wrong. No one wants to be sick, but it is a relief getting diagnosed, because then we can start trying to treat it and we have proof for the nay sayers. I myself went through some unimaginable things at the hands of one doctor and got zero support from my family. Basically got kicked when I was down. I'm still getting over the hurt feelings from that. I finally gave my dad the link to dinet's "Changes" video to watch, so he would better understand. You might want to give it a look and have your family look at it too. It is the second pinned link at the top of the forum. One thing that jumped out to me as you explained your medical problems, was your infection rate. As you are probably starting to understand as you read here pots is a syndrome and one form of dysautonomia. More often then not it is secondary to another underlying cause. Your infection for example could have caused some of your symptoms. With kind of infections you've had, have they ever checked your "Quantitative immunoglobulins"? It is the master test to see if your immune system is healthy enough to fight off infection.

Bump for the newbies! Just so you know your not alone on this.

Hey chaos, I already know my resting heart rate avg. I always take my bp/hr before I get up. Right now my average is 120/76 hr/64. This is actually an improvement for me because I used to wake up hypo and brady in low 50's and occasional 49. Today I went from 62 to 106 without doing anything but walking to the kitchen. That however has been happening much less frequently, since I've been trying my underlying causes. So, your not suppose to exercise on tachy days? I've been doing wall isometric squats and those bed leg exercises someone just posted. To soon to tell anything yet.

Chaos, this is so interesting. I went and looked at the article/website. My max would be 98. Just standing up does puts a lot of us in that range. So how do you get around that. I am currently trying to get some exercise back in. Did physicial therapy and actually got worse. Looks like I had hypermobility issues that were undiagnosed and I was pulling my hip out doing the walking resistance exercises in the pool. This caused a huge knot in my hip and extremely spasmed hip flexors. With the mobility issues I shouldn't have been doing that type of resistance. It is so frustrating, I used to be an athlete when I was younger, in spite of being ill. I certainly wasn't deconditioned then. It was during dance aeorbics I started collapsing, but I'd had near syncopes since childhood, inspite of being a very active child, who always had a hard time getting up in the mornings. Her discussion on things being switched off, makes we wonder if that could also be related to mthfr. Mine is switched causing me to be homozygous and unable to process folic acid and any other meds/chem that follow that pathway. I'm not aware that mthfr can be corrected, treatment is to bypass the defect by supping the active form methylfolate. hmmm, another thing to ponder, thanks for posting, it may help me get a better way to exercise.

Seattle, it makes complete sense that you would get relief from that maneuver. If you google Dr. Grubb or look at the articles by him that are posted on dinet. He describes exactly the volume change your feeling on standing. I was always getting yelled at as a kid for crawling me feet/legs up the walls are object that would get my legs higher. I was instinctively compensating, without even knowing something was wrong. It was shocking when a doc had me do poor mans tilt to see that my hr was zooming when I stood. I did not feel my heart pounding, I would just feel fatigued. If I got caught standing stationary somewhere, I would feel pain and aching and would start looking for a place to sit. Your not crazy and doctors that understand what is going on would never say what that doctor said to you. Good thing to move on and find someone new. I've had to move on from many doctors during my search. I won't lie it was the most stressful part of being sick during that diagnostic stage. Just so you don't feel bad, I had a doc say to me, "Are you one of those people who look things up on the internet and there is nothing really wrong with you." My colon ruptured a few months later. It turned out the my whole immune systems was very ill. I let that doctor defeat me and gave up. The silver lining of the rupture was I had no choice but to get back on the horse again and figure out what was wrong. My surgeon forced me and pointed me in the right direction. So don't give up until you know you've got it figured out and are satisfied with your treatment plan and the support of your doctors.

As for the neuro vs cardio. I have a neuro and a cardio on my team, as well as other docs to treat the autoimmune issues. I agree usually cardio's already have autonomic testing labs, as there are conditions of the heart that can cause dysautonomia's. I think though many of the members on here, have turned out to have pretty normal cardiovascular systems, except for the autonomic issues. My ttt and some other testing was done by a cardio lab. However, the only treatments offered in that environment were the basics, betas, salt loading/water and compression. I knew I had more going on then that and a sudden colon rupture and my surgeon forced me to pursue cause again. It took another year, before I had some answers and thanks to my neurologist who treats autoimmune neuromuscular disorders, I was finally diagnosed an started treatment for small fiber neuropathy/cvid. As the other autoimmune's finally became diagnostic, I've had further improvements with those treatments, especially hashimoto, which has further improved the autonomic symptoms. I still flare though and am not strong enough yet to go back to work or have a normal life. But, I have hope that continued treatment will get me there.

It really depends on the cause of your pots. If it's caused by an underlying immune deficiency or autoimmune disease, then I'd say yes. If it is caused by something wrong with your cardiovascular system, then I'd say no more then general population. I myself have multiple issues with small fiber neuropathy probably as a result of several autoimmune diseases and I have something called common variable immune deficiency. Two of the three immunoglobulins my igg and igm are defective. My Iga is still in tact so I don't get respiratory infections very often, I do however get a lot of other kinds of bacterial and fungal infections and had severe mono when I was your age. Your asking some good questions, with out really saying what specifically your dealing with, so it is hard to see what direction to point you in. The pain in your legs you posted about can be the result of a few different things. I have had similar pain as well as in my arms. I would wake up with my hands fisted and my whole body rigid and in pain. In my case it was probably a mix of a few things. I was fighting chronic low grade infections, because of my cvid, so I always felt like I had achy muscles similar to the flu. BTW my fevers were always low grade even after a colon rupture. So no one realized I was fighting infections. The neuropathy also caused my bp/hr to go hypo and brady during sleep. So, I believe my muscles were contracting during sleep trying to get my blood flowing and raise my low body temperature. With treatment this doesn't happen very often anymore. Are you fighting the flu right now?

Hi, Is it the same kind of lighthead, fatigue and weakness as before you started the meds? Sometimes those kind of symptoms if they are new can be due to the medications. Would need more info to point you in the right direction. However, this is not an uncommon complaint after starting meds.

People who have hyper pots, also have an exaggerated increase in blood pressure, not heart rate alone. Most who do further testing of their catecholamines, ne, e, dopamine will find that their norepinephrine jumps on standing from supine. It is thought that an increase in norepi on standing is a response to blood pooling in the lower half of the body due to them not being able to constrict and push the blood to the brain on standing. Most people who have this have small fiber autonomic neuropathy causing the nerves in the blood vessels to be damage and unable to constrict on standing causing the blood pooling. Norepi also constricts the blood vessels as we go into fight or flight response, as the body realizes it is not getting enough blood/ox to the brain..

I'd forgotten, I also did this for my pkd cat. Had to give her daily subq infusions daily. I bought the bags from a local pet pharmacy. I however am a difficult stick myself when it comes to an iv catheter a human needs to get the infusion.

I don't know that there is a difference between the the poor man's tilt and a TTT. It really depends on how your test was done. Not all ttt's are done equally. I had the longer test and I had it with nitro. The longer test will probably show a hyper response better then a short one. FYI, I had the opposite results with my standing and ttt's. My standing was only 10 minutes and my ttt was two phased first 20 minutes and I did have an extreme rise in bp/hr. Then 2nd phase which started with sublingual nitro, with in 10 minutes of that I had sudden drop in bp/hr, was still standing with no measurable bp/hr and then syncoped at that point. Putting the table down stopped me from going aysistole. You can have a normal ttt and then an abnormal one as well. It also would depend on if you were on your meds or not.

Hey Rich, Glad you finally had it done. Just wanted to let you know though that the biopsy for sfn is to be done just above the outside ankle and the outside of the upper side thigh. By doing both these locations it checks for length dependent neuropathy. If you google Levine, Saperstein and small fiber neuropathy skin biopsy. You will find their medical abstract on sfn skin biopsy. You might want to show this to the doctor in the event he is looking at something else. Sorry I'm not good at putting links in these posts. Keep us posted. I'd also ask them what lab is doing the pathology. It will take some time to get those results back. Hopefully you will know something sooner rather then later.

I play games on pogo.com. You can play a lot of games there for free, just have to deal with ads, or you can pay a fee with no ads. I play memory games like marjong, golf solitaire, and timed games for speed response reflects. They have word games to, which I'm not as good at and should probably play.

Hi, I can also speak to this. TTT, Qsart and the gold standard - skin biopsy, are all test that prove autonomic dysfunction. If autonomic neuropathy is found from any of these tests, then further testing is done to determine if there is underlying cause. In my case ttt showed several forms of dysautonomia which included pots, hyperandregenic rise in blood pressure, and with that rise eventual syncope. In real life I get near syncopes that suddenly drop me to the ground without loosing conscienceness. Once the ttt results are done skin biopsy along with qsart are good tests to do, which then can lead to pointing in what direction to go next. My neuro does both qsart and skin biopsy for sfn. SFN can be spotty or patchy so doing both tests gives one a better chance of catching it. I did not end up needing qsart as both my skin biopsies a year a part showed denervation to my sfns which include both sensory and autonomic nerves. In my case my autonomic nerves that constrict blood vessels, control temperature, moisture product/sweat, hr/bp, gi motility and pain sensation/numbness were effected. Upon these results my neuro tested me for many causitive conditions including stiff persons and carcinoid, some rarer causes, of which we have several members here that have had those diagnosies made. I turned out to have a defective immune system with several autoimmune diseases including hashimoto, a lupus/sjogren like undefined one, and lichen planus a tissue one, along with a depressed immune system low in igg and igm that does not allow my body to fight off certain types of infections effectively. I am also homozygous for the mthfr gene. With treatment my symptoms are slowly improving, but will require life long managment. I'm good with that, though it can be challenging at times. I remember and still deal with the struggles of seeking proper diagnosis, effective testing and finding a doctor that can actually see the forest, instead of just the trees. Wouldn't want to go back to the begining of this process for anything it took decades. I tell you this, so you perserve through this difficult part of the process. Trust your gut, move on if you are not getting what you need, and you will eventually figure out what is wrong. Remember that this is a dysautonomia website providing information and support for all who present with several types of autonomic intolerance and pots alone is not always the only or end answer to getting treatment. While we list several types on our website, often dysautonomia's are a result of a secondary cause. One test alone does not prove or disprove anything. Sometimes tests need to be redone as many times these states of illness are progressive and a normal may become abnormal. So normals should be rechecked from time to time, especially if symptoms get worse. Take care all and I wish you a faster journey to health then I.

Big Hug! sorry your struggling! It will get better. I can't advise you on upping the dosage of klonopin, maybe a call to your doc or your insurance's nurses line might help with that. Do you think there might be a possiblity your thyroid is acting up? This happened to my cousin post pregnancy, I don't think she has pots or it hasn't been diagnosed but she had a lot of the same symptoms that your describing. After months of feeling that way they found out she had postpartum thyroiditis. It couldn't hurt to ask your doctor to test your TSH, Free T4 and free T3 along with the tpo/ab thyroid antibodies. Thyroid disease is one of the secondary conditions that can cause pots. My cousin went on thyroid hormones and did a 90degree turn. I myself had symptoms of thyroid disease for years, and was told my tsh was normal. It turns out I had hashimoto thyroiditis, with a normal tsh and ft3/ft4 at the opposite ends of the range. I become more hypo with synthroid and am now starting to level out with the addition of t3. With the leveling out my wide swings of bp/hr have also calmed down. I'm hyperandregenic pots and was prescribed labetalol an alpha/beta combo that is short acting and has also worked well. Perhaps the klonopin as a benzo is causing you to build up a tolerance requiring more to control things. That is bad if that is happening, I had that happen to me when I was on clonodine, and coming off it was frightening. Something that you should really be asking your doctor about. I hope and pray you feel better soon. I wished I had been blessed with a child, even though I know it would have been hard. Take care sweetie!

Interesting! I recently found out that I am homozygous 2 copies of the mthfr gene. I haven't posted about it yet because I'm still trying to understand it's impact on me and pursuing the proper treatment protchol for it, which is to supplement with methylfolate, the active form of folate. From what I do know mthfr switches the enzyme that converts folic acid to the active form of folate which the body uses. It is associated with recurrent miscarriage, bipolar/psy illness, spina bifida and cardiovascular disease. I'm trying to determine if it also is a factor in immune deficiency and autoimmune diseases that I also have. I understand Dr. Yasko is researching it's relationship to autism. When this methylation pathway is not working it makes it harder for the body to eleminate toxins that are processed through the same pathway. Which I think is the association with autism and vaccines. I don't know that they have proven this yet. I am actually meeting with a natropathic doctor who works in/with my rheumatologist on tuesday. i already meet with a genetic doctor about it. She also noted I'm also mildly/moderately hypermobile with the small joints. She prescribed me folic acid which is the type my body can't process, and I didn't take it. So I'm not confidant about her care. If any one has any experience with this I love to hear from you.

Whoo Who I'm doing the happy dance!!!! Okay we az's have to get together to celebrate with you.

If you reread my last post there were several other areas to consider. The test that you posted were looking at your endocrine system, and is not typically the first round of testing for pots. Usually, they start with cardiovascular testing. You'd know if you had cardiovascular tests. Then there are a wide range of neurological tests as well. Just because you were in the hosptial a week doesn't mean that the hospital you were at knew the right tests to do. If you didn't have a ttt, ekg, a stress test on the treadmill, or ultrasounds of your heart, you did not get a cardio workup. If they did not do mri's or ct's you most likely did not get a neuro work up. In my experience a diagnosis of pots, is the first step and requires further investigation to look for cause. More often then not there is an underlying cause. Right now they are treating your symptoms, not your cause. If cause can be determined then treatment will be directed at cause and your symptoms will either go away or improve. You may still need symptom treatment however depending on the damage that was done that may not be corrected. As far as the meds, you are right on, most of us are sensitive to meds and need to start with baby doses. Also many of us only start one medicine at a time so we can determine which med causes what improvements and side effects. I'm kind of surprised that your were put on that combination at the same time. Trust yourself, not the doctors, you know how you are feeling and if something is working or not.

Playing with your fonts and colors I see! Okay well it's good they ruled those out. Those would be endocrine causes for your symptoms. Did they also rule out cardiovascular causes. You had a ttt and other cardiovascular tests? In another post you mentioned you had significant arm/leg pain. One of the most common causes of pots is autonomic neuropathy, which is caused by damage to your small fiber nerves. Damage to these nerves can also cause pain. The test to determine if you have this is a skin biopsy for small fiber and/or a qsart test. Both if possible. The blood vessels have sf nerves that constrict the blood vessels upon standing. If the sfn nerves are damaged then the blood pools in the lower half of the body and causes a rise in heart rate to try to get the blood back up the brain. If you have sfn, a common compensatory reaction is a rise in catecholamines, usually norepinephrine. This is the body's back up system to constrict the blood vessels. However, if you have this reaction you probably also have high blood pressure on standing. If you don't have this reaction you may be hypotensive on standing. Are you following me?

I agree with you, it does sound neurological. Not sure if your aware but not all neurologist are the same. Kinda of like most allergists and not really immunology doctors even though that is how it's listed. There is a subspecialty of neurologists who specialize in treating autoimmune neuromuscular diseases. That would be the question that I would ask when checking out a neuro. Do they treat polyneuropathies, ms, als, dermamysotis. All these type of illness can cause autonomic neuropathy.

Okay, so your only symptom was the excessive rise in hr. Your blood pressure didn't change at all? My experience with atenenol was that it stayed in my body to long and I was waking with brady and hypotension. I also wonder why you are on two bp meds, as both doxazosin and atenenol lower hr/bp. Klonopin is a benzo and can be addictive or become tolerated requiring more and more of it. It is sometimes used in pots, but is an anxiety drug. In my opinion it may not be the best choice, many here have had trouble coming off of it. Did they start you on one and it wasn't enough so they added the other? Also have you gotten in the habit of taking your waking bp/hr as soon as you wake up while still supine and not moving much. This will be your baseline bp/hr that you would compare your standing/active bp/hr to. It is important to know these things. Also do you know exactly what they ruled out during your hospital stay?

Ach, before starting meds what were your bp/hr both standing and supine. I've been reading your posts and trying to understand what your symptoms have been and why they diagnosed you with pots. All pots is, is a rise in heart rate on standing. If you normal is in the 60-70's when standing you wouldn't have pots. My resting hr can be in the 50's when supine or resting. It was going into the 100's before treatment. My swings are not as wide now. What are medical symptoms are you having? Anything at all that you think is not normal? Not just your bp/hr. Knowing these things would give a clearer picture on whats going on with you and maybe what direction you should go in to rule out underlying causes.

Hi kitt, Actually it is an alpha/beta and I have norepi of 1200 on standing. I take such a baby dose of it I have not noticed any problems with it. I haven't though looked at mcas, and wondered about that myself. I also had problems both with atenenol and propananol. The first stayed to long and I was waking with hypotension. Propan didn't control the rises and a higher dose caused rapid weight gain. A friend of mine who has a genetic dysautonomia has recently been put on a calcium channel blocker, I forget the name, but it seems to be working for her. She went to a kidney doctor and I am going to see him as well. I let you know what it is when I find out.

Hi rachel, I hope the one home health agency can do the iv's for you. How you described how the home health company works to get the fluids, is exactly the same way they do it for my regular atena insurance. They get my ivig from the a pharmacy and then bill my insurance for meds and home health services. The pharmacy part is partly how the home health agency gets paid, as they pay wholesale to the pharmacy and bill the retail price to the insurance company. It is the main way they cover the cost of providing home health services. This is still cheaper then the er though. So don't feel bad about the cost, this is the business model for home health and the insurance companies know that. Glad to see your up to posting .