jenglynn

Ice Skate,

I am happy to hear that your symptoms are better and you feel like your P.O.T.S is gone. I am sure that you live your life with a completely different perspective, now. How we take our health for granted until we don't have it. At least I did.

I also live in La Crosse, WI and I am glad you were able to get into Mayo. My insurance denied my referral for me to go Mayo so I have to go to UW-Madison instead. Actually have my appt. tomorrow morning so we will see how that goes. I was, however, diagnosed with P.O.T.S. in La Crosse. Not sure where you receive your care, but I go to Gundersen Lutheran. They do not a lot of doctors who specialists or know a lot about P.O.T.S but the doctors have heard of it and eventually I did get my diagnosis. I had to see my GP, then a cardiologist, endocrinologist, neurologist, another cardio (electrophysiologist- who is fantastic by the way and now is the only cardio I see there) and an hemotologist. I am sure there were more, not to mention multiple CTs, MRIs, stress test, tilt table, labs,labs, and more labs, thyroid tests and scans, every heart test you can think of and so many more tests that I can't even mention them. I also wore a Holter Monitor for a month which diagnosed my tachycardia. I have a real problem with very low blood pressure and tachy which causes lots of syncope (which has led to multiple head injuries and concussions) and when I am upright on a normal day will have at 15 or episodes of syncope with no warning so there is kind of a safety issue with me because I don't seem to just "crumble" down like some people who faint but I will fall straight back onto anything which is why I have hit my head and cracked it open so many times.

I really hope you stay well but I would keep your Mayo appt. just in case. If you have any specific questions about care I have seen in La Crosse you can send me a private message and I can give you more details. I can tell you it took about 4 months to get the P.O.T.S diagnosis which isn't too long compared to a lot of others that I have heard about. Prayers that you stay healthy and symptom free!!!!

Jen

Oh my goodness, NO offense taken at all!!! I have read all of the articles/journals you have all referred to so that it where the "in absence of" confused me. I am just grateful to have this forum to be able to discuss this! I know that my OH is pretty drastic but I DO have tachy, which was mentioned before, is not included in the OH definition. My tachycardia is very pronounced...usually at least doubles within 10 seconds of standing, if not triples.

I am hoping for some answers tomorrow. But it seems like the doctors are all over the place on this too... so we just helping each other through this and nagivating the material we have. Thanks to each and every one of you who responded. I will keep everyone posted when I (hopefully) get home tomorrow. There are been mention of keeping me inpatient but it is 2 hours from home so I am really hoping that doesn't happen. I am NOT a hospital girl and would MUCH rather be home. This is just SUPPOSED to be a consult.

Jen

Now I am confused more than ever So if my blood pressure drops TOO low but I have all of the POTS symptoms and even a POTS diagnosis then I can't really have P.O.T.S. then? What is it then? Any ideas???

*Thanks for the response. I've heard it said that maybe POTS is the tachycardia with the absence of Orthostatic Hyotension. I am also diagnosed with both. My blood pressure drops pretty significantly when I stand.. when lying down low normal 85/60 or maybe a little lower or higher with a bpm of 65-75. If I stand for 30 seconds to 1 min it will lower to 50/40 or lower.. lowest recorded in the hospital was 38/20. My pulse will increase to anywhere from 150-190 if not higher. There is a pretty large change. But a lot of the time I am technically "hypotensive" just while sitting. It is usually hard for the nurse to get the initial reading on me while I am waiting to be seen. Obviously, these low numbers are the reason for the constant syncope.

I have just seen a lot of contradicting information on this topic and was curious if anyone had the same issues as I do. Thanks!

Hi,

I have been reading and hearing that P.O.T.S is the absence of Orthostatic Hypotension (But you can have Orthostatic Intolerance). How do I know if I have OI or OH? I was diagnosed with P.O.T.S but I am confused by some of the research I have read which states that if I have OH then I can't have P.O.T.S. I have MANY of the symptoms of P.O.T.S as well... most of them actually. I have a lot of the symptoms of Ehlers Danlos Syndrome- very hypermobile, still at my age at 37. One of my daughters was born with a hole in her heart and a heart murmur (which she still has). I was born with the same "defects". She didn't sit up or crawl until after a year old because she was so "floppy". The doctor said she had some kind of connective tissue issue but wasn't sure what it was (but she is almost 14 so this was more than 13 years ago) But she was so flexible and still is. She has already had 3 syncope incidents in the last 2 years (before my symptoms became severe). My first syncope episode occured at age 13. Doctors could find nothing "wrong" with her when I took her to be checked out after all of her episodes. She was always standing for an extended period of time when they occurred (at least 10-15 min). We both can "pass" all of the hypermobility tests that you can find online. I don't know how important the hypermobility is to the diagnosis of EDS but we both meet a lot of the criteria.

So it isn't possible to have Orthostatic Hypotension and POTS together? It seems like a lot of the members on this forum have low blood pressure issues so I am just looking for an explanation as to the possibility of me having both or what is could be even though I have all of the POTS symptoms. If one just have OH does that mean that they CANNOT have POTS? This has never came up with my doctors and I have a hypotension diagnosis but also a POTS diagnosis. Any insight would be great!!! Maybe I am not the only one confused about this!! Thanks so much for sharing your knowledge!

Jen

Thank you all. I feel better. Your suggestions were all great. Low expectations. Write everything down. If he turns out to be wonderful, then great. I do NOT HAVE to follow his suggestions if they don't seem to be a good option. My husband is coming with me and he is the most protective person in the world over me so I know we won't be leaving there without SOME things answered. I started my list and am adding to it all day and will work on it tomorrow.

At this point, I feel so disabled. The constant syncope has me a prisoner. Even crawling on my knees today I had a syncope incident and hit my head on my bed frame. Luckily, just a black eye but nothing serious. I am glad to hear that I am not the ONLY one who feels this anxiety before an appt. with someone new. Going through the whole scenario again with a "specialist" and you NEVER know what to expect. Compassion? Rarely. Condescension? Likely. Skepticism? Usually. Impersonal and Indifferent? VERY likely. If I go in expecting this and receive anything helpful then it will be a great success. At least I am already diagnosed so I have that going for me. I know it is going to take me some time to get out of this and rehab from this awful flare but I am ready to do whatever I need to do so that I can be as much myself as I can be. I know that P.O.T.S or whatever I have is probably not going away but all I want right now is functional. I will keep working toward the next step but one day at a time.

I love that I can post here and you all understand how I am feeling. A friend posted something on my Facebook wall today trying to give me some strength about this appt. and my struggles... I will share it with you because it helped me. I will keep you all updated on the progress and let you know what the services at UW-Madison are like. I have not heard mention of them on this board thus far so maybe I will find another really positive place for us to go for treatment.

I decided this would be my new motto. Yes, it will be hard. Yes, it will take time. But the beginning and the end really says it all. "It will be hard and it will be worth it." I know that the doctors can only do so much, but I have my part to do as well. I feel like this is the fight of my life and I am not giving up... because I want it (my life) back!!!! Thank you all, Jen

I was diagnosed in July with POTS. It has progressed terrible to where I am now. Multiple syncope every day. 3 head injuries and concussions. Tachycardia is constant and out of control. Same with OI. Not to mention adrenal surges, mental cloudiness, dizziness, and everything else we face. I was recently hospitalized for several days and my hospital could not treat me and said I needed to be seen at a major medical center.

I live near Rochester, MN but my insurance denied Mayo Clinic and approved me to be seen at the University of Wisconsin, at Madison Medical Center. I am seeing someone in their autonomic dept. but I have searched and it doesn't seem like I can find anywhere that he has treated anyone with P.O.T.S. I am sure he has, but there is very little mention of it anywhere on their website. He is actually an electrophysiologist/cardiologist and very focused on stem cell research. Because of the "severity" of my condition according to my cardiologist they were able to get me in very soon.

I guess I am nervous about seeing yet another doctor, in a new facility and starting all over. Telling the whole story and afraid of treatments that he may use that I may have tried that haven't worked but he insists on. Or things that DO work for me that he may not agree with. Trying to explain symptoms and going through more tests and having another doctor not listen to me, not hear me, or worst of all, not be able to help me. I SHOULD be looking forward to this and maybe getting some answers but instead I am just apprehensive, anxious and nervous. It took me forever to get someone to listen to me in the first place. What if he thinks that all I need to do is exercise and that's my problem? Or who knows? I know I need to have an open mind and just hear what he has to say but I can't help feeling this way. I feel like the medical profession has let me down so many times. Just can't get past this anxiety. Any words of encourgement would be greatly appreciated. The past month has been so difficult to get through with the worsening of my POTS symptoms, syncope and head injuries.. I just feel fragile. Thank you all for listening.

I did call the clinic and found out that it wasn't my cardio doc who made this diagnosis, but my general doctor. This was just the first time I had looked at the diagnosis list since I had seen her (which was only 3 days before). She noted the DX on that date. She is out of the office for the next week so I can't speak to her right now.

The only thing I can think of is that she put it on there because I do take Paxil and an anxiety medication which was meant to treat P.O.T.S, not specifically depression. I guess I am not really denying that I am "depressed" but to me it is more of a situational depression because of how poor my health is right now, not really clinical depression.

I go see a specialist at an autonomic department on Monday at Univeristy of Wisconsin at Madison. So the depression diagnosis is there and isn't going anywhere before Monday. I guess we will see what happens.

Interesting. Thank you for posting!!! I have had trouble getting my full prescription the last two months and was wondering what was going on. In fact, several months ago, when I took my first RX of Midodrine to my pharmacy to fill it for the first time, my pharmacist told me that it was no longer available and was off the market. After several phone calls and an hours wait, he figured out he was wrong

Hello,

I had my appt. with my cardiologist on Monday. We are trying to coordinate an appointment with a specialist as "urgent" as my syncope right now is severe and blood pressure very low and heart rate very high. I will be seen at UW-Madison in WI and I have never heard of anyone in this forum who has gone there so I am not sure what to expect... but anyway on to my point...

When I left my cardio appt. I was given my post appt. print out as I always am, which lists details about the visit, current medications and diagnosis. I noticed that along with my P.O.T.S diagnosis and hypotension, migraines lalso listed was Depression AND Anxiety. These have never been on my list of diagnosis before and I don't know how they got there or who put them there. Should I worry about having those on my record? Is that somehow going to plague me when I am seeing the specialist or other doctors or with disability in the future? I don't see how anyone could go through all of this and NOT have some degree of depression and anxiety but I was just very taken aback to see it in black and white in my record!

Am I overreacting? Thoughts??? Thank you so much for your insight?

Jen

I feel for all of you. Some of your experiences are just awful. Actually, beyond awful... Just simply unacceptable. And I am so sorry that you have been treated that way. I have had my share of condescending doctors as well. Right now, I feel like I have some decent doctors, but my problem is that because of the nature of our condition, we have to see so many different types of doctors and there are so many times that I feel that they don't work together. I am telling the same story over and over again (and this is all in the same hospital). Please, review your notes, makes your consults and get your ducks in a row. Or I get the "Well, I don't know why Dr. X is sending you to ME. This is not MY problem." It can all be so frustrating because it is hard enough to be chronically ill but trying to handle all the coordination is a full time job at times.

My goodness, this is all so confusing! When I was in the hospital over Thanksgiving they found that my TSH was hyper .12 (last Dec it was .68 and July was .43- so it has been changing for a year) but my T3 and T4 levels were normal but more toward the HYPO borderline level. Like Julie, I have a STRONG family history of thyroid issues. When the endo came in to my hospital room to talk to me she said she just wanted me to get a scan because she has no idea what is going on. Her answer to me is she thinks that my thyroid and pituitary gland are responding to my illness and POTS and that I don't really have a thyroid or pituitary problem.

I have been reluctant to go get the radioactive iodine scan because it is rather tedious and time consuming and she didn't seem concerned that it was really a thyroid problem but my thyroid and pituitary responding to POTS. I can see why we all feel this way! So much of what we hear from doctors just contradicts everything. It is frustrating. We just want to feel better and get our lives back.

Thank you Julie for the quick response! That makes sense... it is just our adrenals (which are "healthy") responding to our nervous system which is "not so much." so. Excellent analogy and now I finally get it. Why couldn't the endocrinologist just tell me that?

My thyroid I don't quite understand. Even the endo doesn't quite get it. In the last year my TSH has went from .68 last Dec to .43 in July and in the hospital last week .12. Well this is quite a change toward hyperthyroid. But then they checked my T3 and T4 numbers and those were normal but were more toward the lower number toward HYPO-thyroid... so the endocrinologist said she had no idea what to say about my thyroid levels. She said the downward trend is concerning but nothing matches up. They want me to have a scan of my thyroid but her guess is that POTS is affecting my thyroid and pitituary gland and that is why the numbers don't make sense. So I guess I will have the scan and go from there but she said unless there is something abnormal on either gland, which she wouldn't expect, there is nothing to treat because the number contradict each other and make no sense. So I left that appt. more confused than I went in.

I am sorry Naomi. Did I read that right that you have lived this way for fourteen years continuously? I can't even imagine.

I also have constant dizziness that is always with me but only since I was diagnosed... Diagnosed with POTS in July 2011 but didn't start getting disabling symptoms until Oct. Since then, I have been dizzy all the time. A lot of the times when I am looking at something, it looks like I have 2 or 3 in my hand, eyes won't focus correctly, and like I am just kind of blindly trying to make my way from A to B when I was able to go outside to do anything. It has only been a couple of months for me and I just can't even imagine how you've tolerate for as long as you have. ((((( HUGS))))) I don't know if you get relief from lying down, but that is the only way I do. If I am lying down in bed then I don't have the feeling. Any other time, even sitting in a regular chair, wheelchair or especially walking, it's with me.

Jen

I am sure this is a silly question... but there are so many times that I have these feelings that you all describe as "adrenal surges". My heart will start to race and pound, I will feel dizzy, clammy and feel like I am having something like what I would assume a panic or anxiety attack would feel like, but to my knowledge I don't ever recall having either.

I have tried to self soothe, lie on my tummy, deep breathing... nothing really helps. The feeling is so much like that you feeling you get when you just avert something dangerous happening- near miss car accident or something- for me anyway. I have also had the metallicy taste in my mouth. I can also feel the adrenaline just rising in my chest and my heart rate will just increase until I feel like I am going to explode. If anyone is close enough to me they can hear it beating. So that is my experience..

So on to my question... Have we all be tested by Endrocrinology to make sure that our adrenals are working right? I explained these "surges" to the Endocrinolgist and he said it was possible that my adrenals were out of whack. They took vials and vials of blood from me (more than I think I had, actually lol) and they did this cortisol test where I was given some kind of stimulant or adrenaline and then I had to come back twice 30 minutes apart and have the blood drawn again. All of my endrocrine tests (except my thyroid) came back perfectly normal. Is it possible to have these adrenal surges even though my endocrine system apparently works just fine? Or what else is happening? He told me that I can't be having adrenal surges because according to the tests he ran my endocrine responds appropriately. Then what on earth is happening to me because it happens on a regular basis and to me one of the worst symptoms of P.O.T.S. Any info someone can share with me would be wonderful!!

Thanks,

Jen

I am sorry that so many of us have to feel this way. So many of the physical parts of our bodies don't work the way the way they are supposed to. The mental affects are devastating as well. I just wish that there were not so many of us who have to feel this way.

I have struggled with this for the past year... a few prior to my first obvious symptom of POTS which was a syncope episode. And it hasn't gone away. I know what I want to say... but what comes out of my mouth is not what was (what I thought) was in my brain. Or I will struggle for an uncomfortable amount of time to recall the correct word. Even when I typing I have to very careful because I easily get distracted with what I am hearing and what I am typing (example: Yesterday, I was typing a letter to my HR contact at work wanting to tell her that our Long Term Disability Company is needing information from them to complete my claim. While I was typing, my husband was talking to me in the background about the kids' obnoxious behavior... so instead I typed: "The Long Term Disability Company is needing information about my obnoxious behavior for them to complete my claim." UMMM. Yeah. And yes, I did proofread it and skipped right over it and sent it. Luckily, I know her and she was right at her desk and called right away and we fixed it quickly... but STILL. WHAT on earth is wrong with me????

I have had 3 concussions over the last 4-6 weeks due to head injuries from all of my syncope incidents so I don't know if that is the problem or if it just POTS related.

And like many of you mentioned, people have had to ask me to repeat myself quite often lately. It doesn't sound to ME like I am mumbling but it happens so often then I must be. It is very frustrated. I feel confused and foggy half of the time and not like myself at all. I know a lot of us on all a lot of drugs for POTS... is there anything we can take to help with these symptoms?

First of all.. I am sorry you are battling this symptom! It is so frustrated. Now that you bring this up, this was one of my earliest symptoms of POTS. Right after my first few syncope episodes, and then I started struggling with shortness of breath and then all of a sudden my feet starting itching like CRAZY!!!! Unlike anything I had never experienced before. This is way before I was diagnosed but it lasted about a month. I would use this cream with peppermint that "helped" but never took it away. And as suddenly as it started it went away. I never thought about it being included in POTS symptoms... but what isn't, right?????

I am sorry you are experiencing these symptoms. At this time I don't tolerate Florinef either. The smaller dose was okay but I didn't really notice a change in symptoms. Doctor raised my dose to .2 and now it is not tolerable. My problem is the headaches. It feels like it puts so much pressure on my head that it is going to explode. Due to multiple recent syncope edisodes resulting in multiple serious head injuries and concussion, I am thinking that is the headaches I am already dealing because of the injuries and concussion being made worse by the Florinef.

I am still taking it, but see my doctor tomorrow and really hope he okays taking me off of it. The headaches are excruciating.

I have not had ANY tests to confirm this but I feel that I may have the hypermobile form of P.O.T.S. As a child was so flexible and my joints would often slip out of socket and go right back in. Even now, I am very flexible and can do all of the "flexibility tests" that I've found on website to indicate this.

I stated on the poll that my concrete symptoms started between 31-40 because that is when my symptoms became debilitating but I can recall having some symptoms as a young teen. I had migraines, frequent diziness, and had my first syncope at about 14. The syncope has actually been with me since but nearly to the degree I have it now (multiple times a day) but I was always one of those people prone to "fainting". Usually only once or twice a year.

Interesting Poll!

Hi,

I voted that I lost weight. I have lost about 30 pounds since being diagnosed in July 2011 (4 months). I am not very tall, 5'3 and did weight 138. A little overweight for my height but I was okay with it. I had a lot of muscle an am very large chested (34 E) so even in the 130's I didn't really feel overweight because of my curvy type body. When I was weighed in the hospital last week I weighed 108 pounds. I was not shocked that I had lost weight, but was surprised by the amount. And my muscles (especially in my legs) has just deteriorated to practically nothing.

My biggest struggle is that for 3 months now I have ZERO appetite. It is like there is nothing attached to my stomach from my brain to carry that hunger signal. I could easily go for days and not eat a thing if it wasn't for my family making sure that I have something. I drink a lot of fluid (alternate between water and Powerade) throughout the day. I drink 1 or 2 protein shakes and sometimes the kids will make me a smoothie. My husband went so far last week to buy me baby food but I haven't been brave enough to try it yet. I KNOW that I NEED to eat to live and get stronger, but even thinking of eating makes me sick and I am just never, ever hungry. Does anyone else deal with this? What works for you? Do you just eat even though the the thought makes you nauseous, I am getting calories from the protein shakes but not what I should be getting I am sure. Thanks!

So maybe I should say I have orthostatic intolerance instead of hypotension. It is just my mistake in my wording then? Because those of you with OI do get low blood pressure correct? Could someone explain the difference to me between OI and OH? I can't seem to find the right definition. Thanks so much!!! Seems like I have done so much research and since joining this forum I realize I have so very much to learn I feel so lucky to have found you all and your individual wealths of knowledge!!

Brye,

Since you worked at UW- (Madison I am assuming??) are you familair with Dr. Tomothy Kamp? That is the specialist that my insurance approved for me to see initially. If that doesn't go well, then I can see one in Milwaukee (not sure of name) and then if all else fails they "MIGHT" approve me for Mayo but that is a long process. Just wondering if Dr. Kamp was someone you had heard of and if you knew if he had any POTS expertise. Thanks so much!

And yes! With kids it is such a hard condition to live with, isn't it? I constantly find myself apologizing to my kids because I am missing out on so much and cannot do the daily tasks that I used to take for granted. I can't work any longer and who knows when I will be able to again. It is just amazing (not in a good way) how many things this illness takes away from us... and it goes so much beyond just "fainting" now and then.

Thank you everyone for the great advice. It does make sense to me that my body is becoming even less used to gravity and the problems will intensify the longer I am avoiding it.

I do have an appointment with my electrophysiologist on Monday (he actually works in Milwaukee and comes to my clinic once every 3 weeks and he works with a partner who specializes in POTS and he called me yesterday and told me that they have consulted a lot about me so we have a lot to talk about on Monday). I hope this is the beginning. I will definitely look into the Drs you mentioned in Milwaukee and the name of your neurologist would be great, Michelle.

I am also going to ask about getting some walking time every day with assistance. That makes a lot of sense.

I think the doctors at the hospital were just so focused on the head injuries and the concussions that maybe they weren't considering the long term effects of my POTS condition. All they kept saying is that above all else they had to keep me safe. And they were afraid I wouldn't survive another head trauma because of the severity of my last one (which left me unconcscious for almost an hour). But I will not get any better this way either.

You have all helped a lot!!! Thank you for your input.

Alyssa, I know you mentioned you have lots of syncope throughout the day. Are you ever alone? Have you just learned somehow to fall in the "right" way and you just avoid any major injury? After syncope, how do you handle the rest of your day? Do you lie down for a while and then get back up when you are able? It just seems like it is so unpredictable and so difficult to manage these episodes for me.. but I haven't been dealing with it as long as many of you. I was diagnosed in July and had maybe weekly syncope... it hasn't been until the last 2 months that it became daily and then multiple times a day.

I guess I should clarify a bit. The doctors did state "bedrest" and said that they didn't want me standing at all... but I am allowed to sit up. I can sit in a wheelchair or in a regular chair. Just no standing or walking. My tachy does get a bit worse with the sitting but I don't think it really affects my blood pressure because I haven't had any syncope while sitting that I can recall. The only thing is to get from bed to a chair, I have to crawl or scoot to get there. They did advise that I do need to exercise my legs as much as I can and they hope the crawling will help with that. Although, my tachy gets pretty high from the crawling along with the dizziness.

This evening I had my first syncope event since being home from the hospital. I was sitting on a chair I have in my bathroom and I had to stand ever so briefly to get myself something on a shelf. I would say I was standing less than 25 seconds. Next thing I know I was on the floor, no warning whatsoever. No injury luckily and my husband heard me fall and came in and saw me immediately and got me back to bed. Such a frustrating life we lead, isn't it?

So I guess I was a bit misleading to use the term "bedrest" although that was what my discharge orders said. They did encourage sitting with my legs hanging. Just no standing at all. I do use compression stockings since I got home, and have been following the high salt, lots of liquids, and elevated sleeping position for a while. It seems like I have tried a lot of meds but there are many I haven't tried.

Even the sitting is exhausting for me but I make myself do it several times a day because I do know it is important. I apologize for the misunderstanding and my poor explanation.

Thanks,

Jen

Naomi,

I am not sure. I have never had a doctor tell me that I couldn't have Orthostatic Hypotension with P.O.T.S but have not been working with experts either. Maybe someone in the forum will be able to help? I do have many of the other POTS symptoms as well, dizziness, syncope, tachycardia, shortness of breath, anxiety, Gi troubles, headaches, and many many more as I am sure we are all well aware of. I didn't know that Orthostatic Hypotension was a different diagnosis than POTS. I wonder if one can have them together or if I am dealing with something else entirely?? Ugh. So frustrating!