sandymbme

My husband and I have often discussed how very frustrating it is to live in an area where seemingly pots does not exist. Every time I go to the hospital here locally ( and I live in a major metropolitan area, mind you) I have to explain my condition to the doctors. Who respond by looking at me as if I had grown two heads! I beg them to contact my specialists and they also say something along the lines of not "wanting to bother them over something small". So I live in perpetual terror of them missing something important, and in the meantime keep getting sicker and sicker. I speak from personal experience, having gone from being uninsured for ten years to getting insurance just a couple of years ago, treatment varies widely on your level of insurance. When I had no insurance I was routinely treated with indifference and rudeness. Now that I have excellent benefits my reception is wildly different. I can tell you that no one made the slightest effort to diagnose anything when I was uninsured, just stabilize and get me the heck out the door! It got better when I got insurance, but once I developed pots it seems at least in some ways I have gone back to ignored. Because my symptoms are difficult to make sense of they just dope me up and send me out the door.

The frequent urination is a brand new symptom for me, I am in the testing and evaluating stage and have the fresh needle marks to prove it!

Morgan- I've read so many funny but frustrating posts from you, I am OVERJOYED to hear one of hope!!!! I sincerely hope that this new doc brings you the relief you so richly deserve!

Good for you! Each little victory can feel so monumental when so many things can be so difficult. Savor your success, you deserve it!

Thanks for all the great support guys! I saw two docs today. A new headache specialist that said simply that was "outside of his specialty but I should have it checked out." Yeah, big help there! I also saw my regular neurologist who is ordering a bunch of blood work. She said the same as many of you, that I shouldn't get too worked up about the sugar levels in the hospital because IV fluids can throw them out of whack. She is sending me for some bloodwork in the morning, but said she suspected "neurogenic bladder". She said that people with dysautonomia often have these types of problems, and that unless it proved to be debilitating rather than irritating she wouldn't reccomend any meds to treat the frequent urination. She said a lot of them lower BP and since mine was 80/60 today sitting, she didn't want anything making it any lower. She did say that the 206 reading was a bit more troubling, because I was not in the hospital at that time, but it may again be related to the pots. She said that many of the symptoms of the pots were difficult to treat because the heart rate and bp can get thrown off by so many meds, and bp and heart rate are usually the primary concern. I don't think I am going to go back to the new specialist, he didn't rock my world. I think as I am in Ohio that I may try to get an appointment with Dr. Grubb. I think that I really need to understand what type of pots I have, and what is causing it. If for no other reason, so I don't give myself an aneurysm worrying about evry new symptom that pops up!

I started pulling together all of my medcal records because I have an appointment with a new headache specialist tomorrow. If you guys are like me, you try to pull the volumes of history into some sembalance of order before a new doctor visit. In going through my records, I noticed something troubling, to say the least. On at least two ocassions, my blood sugar was abnormally high. Like 206 and 177 high. These two ocassions were months apart. I have neve been tested for diabetes. So I do a quick search for diabetic autonomic failure and preceded to scare the @#$@! out of myself. The symptom list was mine, verbatim. I have an emergency appointment with my neurologist for later today because I suddenly have to urinate constantly. (This not so fun new symptom showed up a few days ago.) I already saw my pcp and ruled out uti or bladder infection. I have gone in the space of a few hours from thinking that I have a condition that is a major pain in the rear but at least had the possibility of improvement, to wondering if I may just have something that might kill me after all. I keep telling myself that I am getting all worked up over nothing and that I have had scary maybes before. If it weren't for the blood sugar results I could totally chalk this up to an overactive research tendency. After all, if you believe everything you read on the web about potential health issues you'd be convinced of some new horrible diagnosis every minute. The details of this are just cutting way too close to home.... I know I am over-reacting but I just needed to tell someone how terrified I am. Nobody who isn't going through serious illness can really understand just how scary it is.

I don't know what it could be, but I have had similar experiences. I have had some abnorml eeg results, but since they improved after starting neurontin the general consensus of my docs seems to be that they can consider the problem soved. Sorry I can't shed any light but at least you are not alone!

My migraines have been my major pots symptom. I had one that lasted for 9 months earlier in 2007/2008 that started me down the road that led to a pots dx. I had been doing a lot better after switching jobs, but for some reason this has been a really rough week. It's scary because I felt like things were getting under control, and now for no apparrent reason things are getting really rough again. I've been taking my meds, trying to stay hydrated, staying off my feet and all I have to show for it is the largest weight gain of my life. Which makes everyone tell me how "healthy" I look, when I feel so fatigued and dizzy and confused it is all I can do to keep functioning. I'm just so frustrated I want to throw the mother of all temper tantrums, but I don't have enough energy to pull it off!

Thanks for the kind words. Yesterday was a really tough day. And Lisa, I'll take all the prayers I can get!

I went to the facial pain specialist today that on top of all my other problems I have a horrible case of tmj. He said that my cervical vertabrae were so far out of alignment that I had bone spurs on a couple of my vertabrae and my top vertabrae has nearly fused to my skull. He said that I have been clenching my jaw so much for so long that I have managed to completely wear off the ball part of the jaw ball and socket. Meanwhile my migraines are once again getting out of control and my overall pain level seems to be skyrocketing on a daily basis. My husband means to be supportive by talking about how this will all get better in the next year, but it just makes me feel like he doesn't understand how difficult this really makes my life. I feel that much more isolated because my local docs have never even heard of my condition and frequently act like I'm just trying to get pain pills. They don't seem to understand that I am just desperate for some relief. If they told me that cod liver oil would cure me I'd drink it by the gallon. I think I would completely lose my mind if it were not for this forum. You guys make me feel like I'm not the only one losing control of their body. I know I've seen a lot of posts on cervical spine issues, just wondering if anyone can shed some light on my newest complication. Thanks!

I have had the TMJ for years, it just got signifigantly worse lately. Unfortunately it does not seem related to any of my meds, but I will ask the specialist when I see him tomorrow morning. Thanks for all the kind thoughts!

I have horrible insomnia, I just can't seem to fall asleep. Once I am asleep I want to sleep for days, but getting there is very difficult for me. Thus far, everything they prescribe me for sleep agravates my pots fatigue the next day to the point where ican't function. I had a REALLY scary drive to work last week, I was falling asleep despite doing everything I could think of to stay awake. So I am back to an herbal sleep aid called Calms Forte. It doesn't always work, but it doesn't seem to agravate my fatigue.

I had a horrible slow decline of health and spirits at my last job. When I was diagnosed I had a job that required me to stand for 9+ hours a day. I would go to work for a couple of days and then have to be taken to the ER. In my stubborn determination to keep a job I loved I made myself so sick I could not function, period. My husband begged me to quit, but our health insurance was through my job. I was finally forced to admit that despite my best efforts I could NOT suck it up and make it work. I now have a full time desk job, and while it sometimes exhausts me, I feel more like a "normal" person working full time. I agree that 20-30 hours would probably be ideal, but I have to work full time to keep the benefits that allow me to see all these fancy doctors! I think any decision to work is a loaded one, you have to weigh your priorities and decide where you would like to spend the minimal energy you have. For me, working is such a big part of my self-worth that I figure what I sacrifice in energy for other activities I save in panic attacks about health care!

I have a new dx that I am wondering if anyone else has experienced and if it may be related to any of my pots issues. My dentist tells me that I have the worst case of TMJ he has ever seen. I had a sudden onset of intense symptoms a few weeks ago after years of it being merely a minor irritation. I am not sure if this is related to my laundry list of problems. I do know that the appliance the uber expensive specialist designed for my mouth triggered some horrific migraines that I have yet to entirely shake. I go to see a new specialist on Thursday and was just wondering if this was an experience anyone else could shed some light on?

My neurologist switched me to reglan for nausea. It makes me sleepy, but then again, so does everything!

Unfortunately it seems that a good doctor is very hard to find! I live in the Columbus area and was told by OSU hospital that they refer all their POTS-diagnosed patients to the Cleveland Clinic. That was where I was diagnosed and still drive 2 and a 1/2 hours to be seen. I have yet to hear of anyone that treats it further south.

I definitely plan to contact my PCP in the morning, just trying to get through tonight.... I'm having icepick headaches all over my head, but instead of only lasting a few seconds, they are pulsing for several minutes at a time in one location. Then, within a few moments the pain relocates to another part of my head. The body aches are pretty awful at this point as well. I want off this ride!!!! I'll write more tomorrow, I'm going to try for some sleep. Thank you so much for the kind words, it is an amazing comfort to know I'm not alone!

Thanks for the well wishes! Unfortunately I seem to be getting worse by the moment. My lungs are getting really congested and I am already staring to produce gunk when I cough. I am wheezing quite a bit, but my BP is 109/64 and my HR is up to 98. I go to the cleveland clinic for an appointment on friday to see my headache specialist, and that's where I am treated for my POTS. Maybe I can storm the syncope clinic while I am there! This is just a little scary because I don't know how my POTS is going to effect my ability to recover from an illness I tend to fare really poorly with. And of course, being a sunday, I can't call any of my Docs to discuss my concerns. So keep your fingers crossed for me!

I feel myself succumbing to the infection my husband has been fighting off all week. I have an extensive history of pneumonia, so developing severe complications of an upper respiratory infection is very likely for me. My POTS doc is 2 & 1/2 hours away from where I live and my next appointment isn't until March. Where I live it seems that I usually have to explain my condition to the doctors, so I'm afraid of what sort of complications my POTS can cause. To top it all off, my POTS symptoms have been flaring wildly, despite the introduction of a beta-blocker to lower my heart rate. I"m already developing breathing difficulties, but I know that decongestants are right out! I don't know if I should even use my inhaler, but if it comes down to it, I have to breathe! EeeeeeeeeeK!

I honestly thought I was alone on this one! I get this a lot and find it horribly disorienting. I've had a migraine since august, but this symptom comes and goes....

I'm a "none of the above". My neuro and my headache specialist both recommended cymbalta, which is supposed to be a pain blocker as well as an antidepressant. So far, not much luck with my pain level, but my mood has definitely improved!

Thanks so much for the warm welcome! It's not where I would have chosen to be, but I can't imagine going through this confusing and frightening time without this resource. There are so many things that made so much more sense after realizing they were just part of my condition. I don't know why, but just knowing my wide array of symptoms are "normal" make them much easier to bear. As of yet I have had no significant relief from my headache, but I am cautiously optimistic that the lopressor I started about a week ago is giving me some relief from the rest of my symptoms. With any luck it will get everything under better control. And if not, then on to the next med. So thanks again for the warm welcome!

My journey with POTS started in June of '07. I had been feeling run down and suffered from intermittent dizzy spells, but I was working 6 days a week at a retail department store to pay for my July wedding. I had a migraine that just would not go away for two weeks straight and my fiance took me to the emergency room when the pain became completely unmanagable. The ER doc said that I had low-lying crerbellar tonsils on the MRI, and that I should share my chart and the MRI with my neurologist. The neurologist initially diagnosed me with Chiari malformation, and sent me to a neurosurgeon for a consult. Before seeing him the headache did finally fade away on its own, and on 07/07/07 I very happily married my wonderful husband. After returning from our honeymoon, and much to my dismay, the headache returned on august 12th. (My birthday, ironically.) On August 24th, the pain level skyrocketed to such an intensity that my vision disappeared while I was on the sales floor at work. My boss called the squad, and I was admitted for a course of DHE. I was released three days later with no real improvement. Unable to return to work, I went through a gamut of tests that led the neurosurgeon to conclude that my cerebral spinal fluid flow was not impaired and I was not a surgical candidate. He recommended I find a headache specialist to consult with. Where I live my only reasonable option was the Cleveland Clinic, and even that is a two and a half hour drive. The doctor at their headache clinic immediately suspected POTS, and recommended a tilt table test at their Syncope Clinic. But my neurologist thought that would be "overzealous" and implied I would be foolish to do it. By november I was desperate for relief to my pain, and had no success with any treatment, so I scheduled the tilt table test on my own. (Hooray for my PPO!) Sure enough, mine was a clear case of POTs. I have since canned the crappy neurologist, put together a new medical team, and am trying to learn how to cope. Thus far we have been unable to stabilize my symptoms, but I am hopeful the addition of lopressor to my prescription regime will bring improvement. While this is far from the picture of newlywed life I envisioned, I am singularly blessed in that my husband is my unfailing support. He has been to every doctor's appointment, and comforted every tear. Iam so grateful for this forum, it has made me feel so much less isolated with a condition I had never previously heard of. So thank you so much to everyone that makes it such a great resource!