lynnie22

Well, count me in as well on sulfa and other allergies post POTS. I am allergic to every antibiotic I have taken this past year, as well as had a breathing problem with metropolol, although fine with inderol. Go figure. I agree with all of you to take a tiny amount and see how it works for you. The last time I took an antibiotic, it was one I had been given the year before when the dr suspected lyme, although not a true positive, and then a year later, it took two days for me to develop this rash and swelling that lasted days. So I know about delayed reactions. I don't know why the delay, maybe it's the half life of the drug. Still, I would test in small doses, as suggested.

I wrote a post a couple of week ago about this, so sorry if I am repeating myself at all. My orthopedist went away and my cortisone injection has been delayed, which gave me time to read up on potential side effects. I am in terrible pain with a torn rotator cuff in my shoulder -- so I do want relief. It's just that there are warnings about cortisone injections sometimes causing very high blood pressure, one of the problems I have been having periodically these days in any case, probably adrenal related. From 85/50 to 185/115. So have a bit of trepidation about this. The cortisone causing it because of similar issues. So like a potential double whammy. Those who responded who had had shots had done okay. But after what I read, including s warning from MAYO, I am concerned. Does anyone have suggestions or a better understanding of this, or what else I can do? Thanks for your help!

Although I haven't done a ton of exercise and still am pretty deconditioned, I have also noticed that my HR goes up for the day after exercise, both standing and sitting. Not sure what to do, except to keep exercising and hope that it calms down in time.

Hi Futurehope, I have been dealing with this for six years since my surgery -- now I'm 64. There was always a high FT4, but slowly the FT3 became lower, although my TSH is normal. It is clearly a conversion problem but there is no doctor so far that will deal with it. I don't know if Armour would be the answer, since there is so much sensitivity in both of us to anything, but it is a more whole form of thyroid hormone, although for me and probably you, the synthroid would have to be reduced to accommodate for the extra T3. Does your body convert it at all? Of course getting a doctor to prescribe Armour is virtually impossible within the endo community, at least in NYC. My endo despite his failings has been testing everything and has offered to take scans of my pituitary and adrenals to search for some tumor. Your endo sounds good and like he's trying to help. You are the only other person I have spoken to with the same problem and outside the realm of my endo's experience. A friend of mine who is a nutritionist has suggested taking supplements that help convert T4 to T3. At the moment I don't remember what they are but can find out if that will be helpful. I certainly need to find out in any case. They do say if there's a problem with the thyroid hormones, look to the adrenals so that salivary test sounds like a good idea. We POTS people in any case seem to have adrenal issues. Good luck and let me know how you are doing. By the way, Kitt, that was a good piece of info about the 24 hour urine test. That is what my POTS doctor has done to test for metanephrines.

Future hope, reading your first post sounds just like me! I'm so glad to have found this. I am also convinced that the removal of my thyroid for cancer created all these problems I have been having, and may be one of the reasons for my POTS. I also have a T4 to T3 conversion problem, and of all the endos I went to (about 10), NONE of them admitted to ever having heard of this. This includes one at MAYO, and the rest in NYC. My endo who certainly tries to find the reasons for my problems still is resistant to believing that it is a true conversion problem. He told me that he was worried that the T3 would cause palpitations, especially in my case where I already have them. So I did not take the cytomel. I have "Stop the Thyroid Madness", and have considered Armour, although every endo I have gone to is completely against it. Why is that?? I have also looked into possible adrenal problems, especially since I have had this unpredictable blood pressure, thinking it is being caused by too much adrenaline. But so far, tests are normal. Issie, that is interesting about Wilson's Syndrome. Seriously though, where do we find more naturopathic endos who can diagnose and treat these thyroid issues differently?

Many years ago I went on disability for what was then diagnosed as CFS, but who knows....it may have been POTS all along. Anyway, getting disability for CFS was not easy. I had to fight for it twice, but finally got Medicare Disability. I eventually went back to work. I work for myself, seeing clients one after another, and can only say, I really understand how challenging some days are. I'm glad my job is a sitting one, and I'm glad my chair reclines, but some days I cancel clients last minute, and sometimes I'm not sure what's going to happen. I think people have made some really good suggestions, about school, about finding a job that can help you with your needs. Anoj, your experience sounds horrible....glad you're out of there.

Thank you, Issie. That's exactly how it was described to me. I have avoided doing it for about a year and a half, not sure if it would even help the breathing/low oxygen issue. But as the O2 goes down, and as more doctors get on board with iit, I am feeling more heartened that it may help. Thank you for your encouraging story.

I get B-12 shots for my deficiency but irregularly so also take pills. Thanks, issie, for mentioning the methyl form. I've heard about that. My mother also had severe deficiency and before she was treated for it, she went through a period of time where she became very confused and thought she had a sister (fabricated) who took care of everyone. Several hours after her first B-12 shot, she realized this sister didn't exist and was amazed. For her the shot was like a miracle. It is helpful to read about all that B-12 can do. My POTS doctor is always testing me for B-6 deficiency.

I know that apnea can cause low oxygen problems. THe CPAP should help you. That's interesting about your muscle spascitiy I actually just went to my cardiologist today who went to a seminar on heart holes, what I have, and says that she thinks I should have the surgery, since she has learned that it can cause some of my problems. I think I will be having the surgery in a couple of months. It seems to make the most sense, since O2 keeps going down.

Just to add to the comments. My legs and feet get very cold, and my nose has always gotten cold by itself since I'm a child. They are cold to the touch and I notice lately that I get the chills a lot. I think it is part of the ANS. They don't warm up until they are ready but when they do then suddenly I'm very warm. sometimes it helps to massage them or drink something warm. They should make nose warmers.

Thank you Ash! You are the first person who seems to have the exact same problem as I do. And deal with it similarly. But do they know why it happens? It is very scary....Is it related to the POTS? Maybe we can find out somehow. Mine is low in AM and gets higher later. I take sleeping pills to sleep, which are not the best idea, but have quite a lot of insomnia. Take care.

Would you believe the pulmonologist canceled on me this morning? So it's put off till next week. Well, in the meantime I'll just wait.

sorry you've had it so tough lately, Rama. It's interesting you noticed three groups. IfIcould figure out the other two times I was sick whether they were actually POTS, I'd know where to group myself. Yes, work has sure begun a challenge. Thank God I sit for a living, but all the rest, especially this erratic blood pressure, gets in the way.

Hi Relax, It's so interesting to remember back -- at times when we had symptoms but didn't think of it that way. If I think way back, I can remember two distinct periods of time, with stretches in between, when I had many of the symptoms I have now, but without being aware of the tachycardia on standing. If they both were precursors of POTS or POTS, then I've had waxing and waning. If not, I've been on a steady course for three years. My HR goes up every morning as soon as I stand, without a day off, and continues to rise unless I take a BB. When I first went to MAYO it was only 105. Now it is 130. I think it may be the effect of using BBs. I take then in short acting dosage and so I don't wake up with them in my system. Anyway it's interesting to hear your stories.

Yep. No problems with the pulmonary function test, except some weakness upon expelling air, although they have always insisted it doesn't mean anything. No asthma. Shortness of breath like many of you at times, although it doesn't correlate with the oxygen being low. I have never been given the drug during the test, because my tachy has always gotten much worse on it. I think I have a tendency to tachy regularly and super fast heart beat when standing. It sounds like most of you have a normal oxygen reading.

Hi Snowdrifter, I agree with Katybug re a sleep study. Falling asleep while walking means pretty severe sleep deprivation, or some other problem. I know, sleep apnea can be one cause. As far as sleeplessness goes, I too have a long history of problems falling asleep. I also watch movies until the middle of the night, and more recently, I get out of bed when I can't fall asleep. I find that leaving my bed and going into another room for an hour helps me get to sleep. I also listen to music to help me get sleepy and try to make my bedroom a dark place with little entertainment. I also take meds for sleep, but I must say, as of late, sleeping has become a real problem. I hear it's common with our problems, although sleep is also essential. It is also true that bp, if low in the AM, can make it really hard to get up. That is sometimes my problem.

Thanks for your replies. To answer your questions, what are ABG's? Blood gases? I don't think so. I've had hundreds of blood tests, but not arterial except for the one that tested what my blood oxygen level was. It was very low. That is how my pulmonologist decided I have a shunt. Funny though, if it really is the hole in my heart and has been there all my life, why would the oxygen level suddenly drop? No one could answer that. The surgeon who did my first shunt study did it on the forehead which showed general shunting. He thought it was coming from my lungs, but on a CT scan, there were no abnormalities. The heart then showed this tiny hole. Still, they feel the low and getting lower O2 must be related to the shunt. But of course no one knows much about POTS. By the way when I was at MAYO, I had a sleep study and my O2 level dropped to 82 while sleeping, something the doctor there felt was related to my taking sleeping meds at night, but whether that is related to my O2 dropping entirely, I can't imagine. My CBC is normal. Borderline B12, iron, but good CBC. Abnormal thyroid levels always since mine was taken out. BADHBT, when I had surgery many years ago before I even knew of POTS, I had a HR of 130 at all time, higher when I moved of course. But who knew? I guess the pulmonologist's suggestion may be the only way to go. I'll see.

I've been Following the topic of difficulty breathing with pots. I didn't notice that a low oxygen saturation level was necessarily a part of that for most of you. My pulmonologist wants me to have surgery which is why I'm writing and asking for your opinions. Following my diagnosis of pots at Mayo, I came home and went to several doctors, including my pulmonologist. I have had trouble catching my breath for several years. No one knew what it was. However upon my return about three years ago suddenly I had an oxygen level That fell periodically to 88 or 87. My pulmonologist was concerned and sent me to a surgeon who tested me for a shunt. After much further testing, it turns out I have a small PFO -- small hole in my heart . No one feels this hole has anything to do with the low oxygen but both my pulmonologist and the surgeon think closing it is a good idea. Even the pots doctor thinks well maybe it will help the pots. I am okay with having the surgery if it's needed but then when I read about respiratory problems and pots, I wondered if it also is connected to the oxygen level dipping frequently. Over the last few months it keeps dipping lower. I am seeing my pulmonologist tomorrow who knows little if anything about pots and I wanted to have whatever information I could use. Thanks a lot for your feedback.

Hi Angelloz, Sorry about all your problems. I know, they always blame everything on anxiety. There is a breathing thread that's going pretty strong. I hope you have a chance to read and join in. It sounds like that's one of the issues you could use help with. As far as my blood pressure, so far NOTHING has helped except a high load of Inderol when it's soaring up, and usually when I'm working, I have clients right there as I'm freaking out. Sometimes i tell them to go, no warning, somethings I muddle through. Ironically there's little I can do, but working since it's sitting is one of the few things I can get through most of the time. But the highs are unexpected and more frequent and no doctor has a clue. THey tell me to breathe and think nice thoughts. Mine as I've said goes to 186/120, it's the lower number that scares me. Yours though gets pretty high, too. I can really relate to alot of your symptoms -- vision is a real problem a lot, no one in the doc community pays much mind. I have ocular migraines and blurred vision often. Hope thing improve with you too.

i find this question very interesting. I recently decided to return to psychotherapy in order to tease out traumatic events that happened several years ago from the worsening POTS symptoms. Although I do not think the PTSD caused the POTS (there are several years in between), I do think traumas can have a profound effect on our nervous systems and certainly leave us vulnerable to a breakdown in its proper operation. Hyperarousal as one of the symptoms of PTSD seems to cross over in some way. I also have thyroid issues (no thyroid) and do attribute the POTS partly to that. Ultimately I do not think PSTD is responsible for POTS but can contribute to it.

Hi Angelloz, When does your blood pressure get very high? It sounds like it goes really low when you stand. Most I don't think have the real highs like I do or you do, and I'm not sure it's related to POTS but it has to be something with the autonomic nervous system. It really scares me because it's accompanied by tremors and anxiety and the bottom number can get really high and I'm scared of a stroke and no one can really figure it out. Your low bp, do you take any of the meds that help with that? I imagine you can't because of the highs.

Thanks, Katybug. I found some of it in a topic "Integrated/functional medicine". Looks interesting and promising. But I do think there is more written by Farmer Amy about her experience in TX. Speaking of mind/body, have any of you ever tried energy medicine? A few years ago, I went to a Chi Gung Master for a few months of acupressure and energy medicine, I felt great for almost a year. I was feeling really sick at the time, although had not yet been identified as having POTS. A dear friend of mine with end stage cancer saw him and during the time she was with him, about three years, her cancer did not grow at all. I never found anyone like him since.

Just to relate to BoyMommy3, the definite trigger for me although if it was, it came on very slowly, was the removal of my thyroid six years ago and a never balanced thyroid hormone level. It seems as if quite a few of you have had waxes and wanes, and there really are triggers that bring it back, but so delicate. I am hoping to get better, although since diagnosis three years ago, I have only gotten worse. There are good days and bad days, but always the same racing heart when I am upright and now this blood pressure problem. What I know I don't do enough of is exercise which I find exhausting but I've lost twenty pounds over the last few months and I think it's muscle atrophy. Ten years without a relapse, badhbt, is great! Hope this flare gets better soon. Apparently any stress or overexertion on the system can do it.

I agree with Momto and others that breathing exercises, meditation, and other things associated with yoga can only help. I am so curious about the connection between yoga and our autonomic nervous system since many years ago Swami Rama was studied because he was completely able to control his autonomic nervous system -- blood pressure, heart rate, even able to stop his heart from beating. Very well documented study. Of course, this was after many years of being a yogi, but still. There must be some of this that we can use. I imagine, looney mom, that sunshine and pet friends, can only help. I'm also curious about biofeedback as helpful. Isn't that part of the program being used successfully in Texas with some (that and exercise)?

Does anyone know what causes it to come and go? My neuro made me wonder if it was really POTS that I had when I was 25 and again when I was about 45. During each time I felt very dizzy and faint but never fainted, it lasted about 1-2 years each, I was exhausted, anxious and out of breath with real vision problems. I actually have no idea what it was -- diagnosed the last time by a neuro as having CFS but who knows. It just slowly went away. Biz, do you have any idea what brought on the relapse, or helped it go into remission?