Traceyf

Absolutely..... I always wonder what is driving this.... Even though I know its not anxiety ( as they so like to throw at you ). Sometimes I wonder is this what having a nervous breakdown feels like?? There are times its just all so all consuming and I think for me I have to take a step back and tell myself that I cannot control everything. I can just try to take the best care of myself for myself and my families sake. If I hyper focus and the symptoms and constantly am reading about it, I sometimes get caught up in the overall " despair" that having a chronic illness can bring with it. A positive mind goes a long long way with this craziness....its just sometimes very hard to divert myself in that direction. Because so little is known....I find it to be a very lonely illness.

What if its the opposite. If they are saying its not POTs. That I dont have enough of an increase in Heart rate, but I do have BP fluctuations and orthostatic 'symptoms' without passing out. I have some severe symptoms of Dysautonomia, but not POTs...then what its it? And how do I go about finding that out?

I have been on Atenolol for 12 years at a very low dose 12.5 mgs at bedtime for Migraines. My doctor told me that its one of those meds that over time needs to be increased, that it works better on the heart rate than it does on the blood pressure. I am very med sensitive. He recently tried to increase it in order to control my BP better, but it lowered my HR really low...40 lying down. It did nothing for the BP. And I was very fatigued on it. I think I have hyper pots..and honestly even though my heart rate stays low on the beta blocker I question whether is it making me feel worse. I have 0 for energy and feel so short of breath all the time. I wonder about MCAS and the beta blocker. Some of the side effects are tingling and cold extremities, Its hard to know if it is exacerbating the POTs symptoms. , Its so hard to find a doctor to give me any answers that I feel like I am self diagnosing constantly.

Canadiangirl Yes! That all makes sense to me. I will shake uncontrollably when I go to bed only to wake up 4 hours later drenched in sweat and the temperature in the room has not changed. I am a little concerned though because the skin on my cheeks and nose is so red that if its a thermoregulatory thing then I m burning from the inside out!!! That's a scary thought. Funny though because I never felt warmth yesterday, no flushing, just freezing cold on my face. Yet it's showing as a burn on the skin, almost as if I had been outside in our lovely 7 degree weather and I got windburn....even though I never left my 70 degree room !

Hi Everyone I thought that I had seen every symptom but now I seem to get so nauseous, and after I have been up for a while ' a good while, like 3-4 hours I get a terribly cold nose and hands. I was sitting at my computer most of the day yesterday and sitting for me can sometimes be worse than standing. My face gets very pale and my nose gets so very cold. Ice cold! I woke this morning with a bright red rash under my eyes, and on the tip of my nose. It hurts to touch my skin, and it looks like a sunburn! My eyes are very dry and the whites area grey looking. I also can't seem to quench my thirst. I didn't go to the PCP as I am not having much luck with the medical field lately. I feel crazy posting these odd symptoms...I'm hoping someone can either relate, or can point me in some kind of direction. I am also freezing all of the time. Chilled to the bone! Thanks Tracey

Puppy love Im glad that all went well for you today . I know that you had expressed nervousness about the procedure. I have one scheduled in February and I am also a little nervous about it ! Tracey

Altruism I have need getting PACs PVCs also for the last 7 years or so....mine are definitely related to hormones as they get worse near my period and then seem to go away and I don't a feel them at all. I have also worn many holter monitors. I do however know that they do get worse with anxiety so as hard as it may be try not to focus on them. Believe me I know it hard not to hyper focus on them but they won't seem as scary if you don't. Hope you are feeling better very soon. Tracey

Hi Everyone I had TTT done at Beth Israel In Boston 3 weeks ago. I called for results and the secretary to Dr Freeman ( who tells me every time I call that I am on the waitlist for an appointment and there is a 7 mth to 1 year wait). Told me my results were faxed to my PCP ( who admits to only having knowledge of hypo pots ). She then proceeds to read me the final report over the phone which says "essentially normal TTT ". I was shocked! Even though I didn't pass out ( my BP rises upon standing ) I was very symptomatic. Called my PCP who reads me the letter he received. It says that while I had symptoms, they did not correlate with my vital signs. I had a delayed overshoot on phase IV of the valsalva manuveur. And that there is an overshoot of the sympathetic nervous system. My PCP reads this as that I do not have dysautonomia and that I should diet and exercise! I have no idea what any of it means, just that I feel like I am back to square one! Where do I go from here? Does it mean that I don't have ANY form of autonomic dysfunction? I am calling tomorrow to get the actual report faxed to me along with the letter. Help!!

Does anyone have any advice on following a Gluten free diet? I am newly diagnosed and was told by my GI doctor that I should go Gluten free. Any good books on the issue? Anything that might help me know what to eat/not to eat. Just one more thing to try and figure out. I am so overwhelmed by all the information about this disease...to completely change my diet right now will be challenging.

This past February is when my dizziness and Vertigo started. Thats when I got really sick with the trembling and the nausea and the adrenaline surges at night. I also have muscle pain, shaking, and all the other Dysautonomia symptoms. I was finally diagnosed via TTT last week. So...now that its bee a few days with the Atenolol increase. My Heart rate is not going over 65. Thats even with climbing the stairs!! lying down my HR is 47. Scary to think what it is at night while sleeping. I have no energy and my legs feel like lead and I have mild chest pains while trying to clean house etc. My blood pressure.....is still high. 154/89.......thats standing. Lying down it is high in the am 140/80. I think the atenolol may not be the right beta blocker to be on for hyper pots!!

I already on Klonopin and a beta blocker and think thats why it took so long for me to be diagnosed. I think they were keeping this at bay until my recent flare was so bad. I was on a low dose of Klonopin .5mgs so they just increased it by half of that in the morning. It has helped tremendously. Increasing the beta blocker has made my HR really low...and I find that I am exhausted during the day. My blood pressure, however remains high. I completely related to missing out on things and being a good mom...I have 3 grown daughters in their 20's and one 10 year old daughter. This past 4 months I feel like I am missing out on her life, and she is missing out on doing all the fun things...the mall, the movies..just having a mom who is not in bed all the time would help. I am also frustrated and feeling depressed over all of this...Im looking for a light...and not finding one... good luck with your search for answers, I am hoping if I keep posting I will get some relief from that feeling of being so alone in all of this.. Tracey

I am also a Newbie and reaching out almost desperately for understanding and what to expect, I am at the place where I find it hard to "live in the moment" because every morning I open my eyes and am afraid of what symptoms I will experience , or what new curveball will be thrown at me. The medical profession moves to slowly. its very hard to get reassurance when nobody knows what your talking about.....I have a hard time explaining the disease myself. I hope you find comfort here also,,,

lying down 130/75 HR 55-60 standing ......my highest is 175/100 HR 99 Recent treadmill test 170/90 standing....while on treadmill 3 minutes only.....210/130...HR 140 . needless to say, test was stopped there... doctor recently raised atenolo dose,,, now blood pressure still high...but Heart rate never higher than 65 no matter what,...and while lying down its 47. Im newly diagnosed...and 4 months into this...I am so depressed and feel helpless.

Hi Everyone, Hoping someone can shed some light into what might be happening to me. I was just diagnosed with Hyper pots at BI in Boston based on my TTT. I have yet to see the nuero there as there is a 7mth to one year wait!! My PCP is doing his best with what he knows to try and get me some relief. After a really bad flare, I seem to be coming out on the other end, although not totally right and doubt I ever will be,,, I have been on Atenolol 25 mgs for migraines for 12 years. I have also taken Klonopin for the past 10. During this whole flare I increased my Klonopin which totally helped with my adrenaline surges and restlessness (thank god).. My problem is I went off the atenolol for the TTT. I have always taken it at night before bed. The day of the TTT I took it that morning after the test, instead of going back to at night i started taking it in the morning. Heres what I have had happen since I made the change. My BP in the morning supine was always good 130/77 HR 65 Standing it would go to 155/95 HR between 90-100 I experienced the pounding Heartbeat during the day and the longer I stood the worse I would feel. Now since taking the atenolol in the morning thats all changed,,,, My BP in the morning supine when I wake up has been 150/90 HR 50 Standing it goes up to 165/100 but my HR stays low....55-60 I feel very tired. Like moving in slow motion. I dont have the restlessness or the trembling, or the feeling that I am going to pass out this way though. I have less energy but I feel like my legs can support me, if thats makes sense. My PCP wants me to increase the atenolol to 12.5 in the morning and 12.5 at night with the thinking that my BP will stay lower all the time because it will be more of a constant dose. I worry about my HR going much lower than 50 at night??? I also wonder if my BP is going up BECAUSE of the atenolol. I know that sounds weird, but now that my HR is low......I feel that my BP is higher??? I Sorry for the long post, Im am so incredibly confused by all of this that I dont know who to listen to,,,,I figured that you all would be the "experts" that I should turn to for real advice, Thanks Tracey

Can anyone diagnosed with hyper pots tell me how thy got through a cardiac stress test. This is just yet another test that I am worried about. Blood pressure going up with exercise, heart rate though the roof, shortness of breath etc. any tips?

Thanks Spinner I was tested for adrenal issues last week by an endocrinologist, I had blood drawn, then had a shot of ACTH, then blood redrawn. My results were normal. What s the test they do for blood volume? I m being tested in the autonomic lab, was told if failed the doctor I need to see for treatment has a 1 year wait!!!! Not sure what I will do in the interim as that seems absurd!

Thanks for your reassurance. My paperwork says they will test my heart rate and blood pressure in response to deep breathing, active and passive standing, head up tilt table testing, skin responses to deep breathing, and mild electrical stimuli. It also says do not eat 2 hrs before the study, and that its all non invasive and painless testing. I am assuming there are going to be additional tests to the TTT? I just want some answers...either way!! Tracey

I am scheduled for my first TTT tomorrow at Beth Israel in Boston Ma. I am suspected hyper POTs. What should I expect to happen at this test? I am a nervous wreck lately, almost home bound the past month due to adrenaline, lightheadedness and overall lousy feeling. I had upped my klonopin to deal with day to day life but my paperwork says I need to be off it for the testing. I have also been on a beta blocker for 12 years to control migraines. I have been off that now for 1 week, and feel horrible. Anyone's help as to what I can expect during this test would be a godsend. Thanks Tracey

I have a second opinion scheduled there in January. Haven't heard much about anything here though. There seems to be someone at Boston Medical also. Where were you diagnosed?

Also...I just turned 50 ..ugh Anyone find that this disease gets worse for women at this age. It must be hard to sort through the menopausal connection. My GYN said that I am not in menopause yet. Peri menopause absolutely. Some of these symptoms overlap for women at this age.

Hi Everyone Thanks so much for the replies! Familial dysautonomia was ruled out . When I had the vision loss from my migraine I was checked very thoroughly for any type of blood clotting disease and anti phospholipid syndrome was also ruled out. They could find no answer for the vision loss except the migraine. I saw many specialists at that ime at mass general Hospital Boston, and also mass eye and ear in Boston. The only thing all of these specialists did not do at the time ........was take my BP supine and standing. As for mast cell...I do think there is one component there. 15 years go I started having what they called out of the blue anxiety attacks. Racing heart, chest tightness. After many doctors appots i was found to have severe refux. I had a lap nissen procedure to stop the reflux because I had high sensitivity to all the meds and couldnt take them. I have issues with meds...I seem to have the rare side effects. after that surgery is when I think a lot of this started with me. I still suffer GI gastritis, IBS and other stomach issues. I do have some sweating...from my feet only. Its actually very odd. That just started happening with this latest flare up. Also with this flare I had increased unrination which was so frequent that had me freaked out also! I dont know if I have flushing. When upright...and moving around my house, cleaning etc. I get horrible feelings of heat from my neck up. Feels like I am on fire or like a should sweat to release the heat, but I dont. I do not get red in the face or neck though. I am actually pretty pale while standing. Is that considered flushing.? I also just had an endocrinologist appt. She did a adrenal test where I had my blood drawn, then I had a shot of something, ACTH I think. I waited and hour and had another blood draw. My numbers were good for that and she told me that I do not have adrenal failure based on that finding. I have not been tested for aldesterone. Will the autonomic lab do that when I see them next week? Not sure what to expect there. I have a consult coming up with a metabolic doctor to check for the mitochondrial piece. Thats where my brother and my daughter and I share the connection, we think. Has anyone been tested in the Boston area. I am still dumbfounded by how little they know about this at Mass General. Thanks again Tracey

Yes we do have a strong family component. From what I have found it can work against me though. Sometimes doctors give me the look as if I couldnt possibly have that many family members with similar issues. Sometimes after I give all the explanations, the family history, my symptoms, all I get back is...."you are a very interesting case". I just want someone to help me get back to even close to my "normal". I think acceptance of the new "normal" must be one of the hardest parts of this disease.

Hi Jen I feel like you have written my story. Mine however has been going on for over 15 years to get to this point. I also can relate to the loneliness that comes with this disease. Even though my husband has been wonderful throughout all of this, it is hard for me to put together and I am living it. Because there seems to be so few doctors who deal with this the medical profession becomes increasingly frustrating. You were diagnosed quickly. I have a brother who went through the battle of the diagnoses before me, so I am blessed that I have him to talk to, ask questions, and as sick as he is...get reassurance from. Tracey

Hi Everyone So happy to finally be able to post! I am currently undiagnosed. I have a TTT scheduled for next week at Beth Isreal Deaconess Hospital in Boston. I have a brother who is diagnosed with POTS, hyperengerneric, Mito disease, and a 10 year old daughter diagnosed with Mito and dysautonomia. Her presenting symptom at this point is problems with temperature regulation and recently has had numerous bone fractures. She has passed out 3 or 4 times now. I have 3 other daughters who have a history of passing out, less now that they are in their 20's. I have had issues for I would say 15 years. I have always had periods of time where I would be "overstressed" the doctors would say and I would be in bed for 2 weeks at a time with exhaustion, muscle pain, joint pain, dry eyes, cold hands and feet, red nose, tingling in hands, feet and face, palpitations, migraines which resulted in permenant vision loss in one of my eyes, bouts of dizziness and vertigo. I am treated at Massachusetts General Hospital in Boston. After doing the round of doctors in the last 15 years I was told that I had..fibromyalgia, mixed connective tissue disease, complicated migraines, and panic disorder. In February of this year I started with vertigo. This has progressed to extreme fatigue, constant restlessness, foggy head feeling while standing, flushed feelings (although my skin looks pale and doesn't turn red ) I am freezing half the time and feeling so flushed the other half of the time that I have to go outside to get relief. I have absence of sweating, and my body temperature goes up. I feel like my feet wont hold me up when standing. I cant stand completely still, I sway. I have been on a beta blocker for 12 years to control migraines. I have also been on klonopin .5 mgs for 12 years for my so called panic disorder. All this time I have never had my blood pressure or heart rate taken while standing. My BP has always been 130/77 sitting and my pulse runs around 65 sitting. At my brothers suggestion I did a poor mans TTT and was suprised to find that my supine BP which was 130/74 HR 52, rose to 154/93 with a HR of 94 upon standing. I am now in what I believe to be a state of Madness. I have been back and forth to my PCP, who has no idea what to do with me, except to tell me that it is not normal for your BP to rise upon standing! At my request he sent me to a neuro at MGH who was supposed to be familiar with POTS and dysautonomia. The nuero ran blood work for tumors. Nor epi and epi levels, and cortisol levels. He wanted to put me on Topomax. Obviously he thinks its migraine related. Obviously he has heard of dysautonomia and POTS but obviously he has no idea how to treat it. I saw an endocrinologist who did cortisol testing which was normal. My Vitamin D level was a 1, so she wants me to do the 50,000 IU for a week. I was scheduled for two TTT at MGH which I cancelled because they were going to give me an injection to make me pass out if I didnt pass out. I keep telling them I dont pass out, yet I feel like I am going to pass out!! My life has gone from one extreme to another. I was supposed to be on a flight to Florida Tuesday but I just couldnt do it. I cant walk from my front door to my car without feeling short of breath. Im lucky I get a shower in and thats the highlight of my day lately. I feel like I am on the edge constantly. I have tremors, and then muscle weakness. I have worn 2 holter monitors recently. Both came back normal except for a couple of runs of heartbeat at 120-130. I also had an event monitor. I am scheduled for a stress test next week. I have seen cardiologists 10 years ago and had all of these and an echocardiogram before. I have also had MRI of the head and neck, and the spine. I have had EMGs, ,.....etc etc etc. I am weaning off the beta blocker so that I wont be on it for the TTT, this is no easy feat after 12 years!! I have upped the klonopin by ,25 mgs because I was non functioning. I had such adrenaline rushes that I couldnt even go to the grocery store. I also get lightheaded just having a conversation. I beleive that off the beta blocker I will have a much larger jump in HR. Any input is appreciated. At times I feel I am losing my mind!! I applaud all of you who are living with this.....I am only going to BI because I have now realized how difficult a diagnoses is going to be....I live in an area where we are supposed to have some of the best hospitals in the world.....and I cant find anyone to treat me let alone diagnose me! Sorry for the long winded post. Thanks for listening.