Jump to content

correct diagnosis?


Recommended Posts

I was diagnosed with dysautonomia about 4 years ago with a positive TTT done by a cardiologist. Of course I went through many other blood and urine tests, heart monitors, EKG, and many others for over a year before seeing the cardiologist and being diagnosed. And there were a few late night ER visits with heart racing and palpitations/dizziness. After the diagnosis I pretty much quit my follow ups with the doctor. He had given me a Beta Blocker(Lopressor) and it made me tremendously worse. I began to wonder if his diagnosis was correct and also at the time I had no medical insurance and no information about this disorder. After the beta blocker and trying an anti depressant that also made me worse, I swore of all meds and decided to live the best I could with my condition.

It has been a long time since I have been to a doctor and for the past year I was doing great but now symptoms are back. Brain fog, light headed, feeling like adrenaline is surging, anxiety, numbness in limbs, frequent urination and dehydration, heat and exercise intolerance, chest pain, heart palpitations, shortness of breath, intolerance to alcohol and meds, blah blah blah, etc.

I am now wondering about the diagnosis. After finding this board a few weeks ago I have seen so many people that mirror my symptoms and circumstances. All the symptoms that have read sound like me and now I think that dysautonomia was a correct diagnosis. But I didn't know until finding this board that there are different types of dysautonomia. Mine began during pregnancy.

One of the main questions I have is about my BP. I thought that most people with this disorder have low bp, especially while standing. But my BP had always remained high when I was first diagnosed.(Now it seems normal to slightly high). I got pre-eclampsia at the end of my pregnancy and my bp never seemed to go down. During the TTT I was tilted around but never had any symptoms UNTIL they gave me the IV medicine that sped up my heart rate. It was terrible. My heart raced and pounded so hard against my chest that it hurt. My knees buckled and I became very dizzy. My blood pressure was taken and I heard that nurse say that it was too low to even register and that he had only given a very small amount of the medicine to me. I felt like I was dying. The doc asked me if this is how it felt when I had one of my "spells" and I said yes. After this doctor diagnosed me and gave the beta blocker to me and that didn't work, he did refer me to a neurologist. I insisted upon it because I told him the meds he had given me hadn't helped and if I had dysautonomia than a neurologist could treat me better and if I didn't have it than the neurologist could rule it out and treat me for something else.

Well, all the neurologist did for me was treat me like a crazy woman. He did all the usual reflex checks and listened to my heart with the stethoscope, the usual stuff that has been done to me a million times. He never took blood, urine or did any other tests. He simply took my blood pressure with me sitting, standing, and lying down and asked me some questions. He seemed especially interested that I had some medical knowledge without any training and I simply responded that I had done a lot of research with books and the internet, like anyone would do with some unknown illness that had plagued them for so long. He seemed to imply that it made me a hypochondriac(sp?) that simply looked through books to find a disorder I liked and then claim it. He never said that to my face but I could tell he was thinking it. He then got a visitor in the room during my expensive non-insured visit, and proceeded to leave the room and converse with colleagues about some personal bullcrap. Then he came back and looked at a major rash I had all over my body that couldn't be explained and told me to go to a dermatologist. He proceeded to tell me he didn't think I had dysautonomia or any other neurological disorder but that I had just had a baby and I was under a lot of stress. He said patients with dysautonomia had low blood pressure, especially upon standing. He told me to come back in a few months if I still had problems and then maybe he would do some tests. He patted me on the back and I went home in tears.

So, my question is, could dysautonomia be the right diagnosis even though my bp never registers as being low. They said it was low during the TTT but I thought that it was a possiblity that the automatic bp cuff hadn't been able to read it because I was moving my arm while it was inflating. Can people with dysautonomia present with high bp? What are the odds of having a false TTT? If it is dysautonomia, what type do I have? My symptoms seem to sound a lot like POTS. Any help would be appreciated. I know my symptoms are very similar to a lot of people here and I would really value if someone would share thoughts and personal experience with me.

Link to comment
Share on other sites

April,

I'm sorry to hear about your experience with the Neurologist!!

It can be very difficult to find good Dr's.

What part of the country are you in? Have you checked out the Physician List on this web site?

Your symptoms sound similar to many with the exception that you started having trouble while pregnant. Most people feel better during pregnancy because their blood and fluid volumes literally double which resolves the hypovolemic issue many with dysautonomia face.

I have heart rate and blood pressure problems that are all over the place (both too high and too low).

The TTT does NOT provided a definitive diagnosis. There are many false positives and false negative; the ttt is a tool to help physicians make a diagnosis.

Personally, I have had better success, more knowledge and understanding from cardiologists than neurologists in dealing with Dysautonomia. I have not been tolerant or helped by most medications to date.

Have you tried other meds aside from the bblockers and anti-depressants...like Florinef, midodrine. Have you added extra salt to your diet to see if that helps (although if you bp is too high that might not be good for you).

Keep searching for a Dr in your area that works with Dysautonomia.

Link to comment
Share on other sites

thanks for the response. My symptoms began during pregnancy but I only had "spells" once in a while during that time. They became full blown after delivery and worsened for several months. The bp issue is what I am not sure about. I won't have medical insurance for about another month so i won't be going to the dr. before then. There is a dysautonomia clinic about 60 miles from here so that might be an option if I can get my insurance to cover it. I already have thousands of dollars worth of medical bills at this point and don't need any more. Besides, I'm not sure what good it would do if I can't find meds I can tolerate.

Link to comment
Share on other sites

I have to say that you sound a lot like me--although of course I cannot diagnose you! I also developed high bp during late pregnancy and POTS started about mid-pregnancy. I was not diagnosed until postpartum and this was after the typical horrible experience with doctors that many of us seem to go through. (I did have a very compassionate neurologist evaluate me though I have to say. She was the only one who actually believed there was something wrong with me, until I finally saw an electrophysiologist, who I see now).

My bp has been towards the high side too since pregnancy, and I never had high bp in my life before. It has always tended to be low. However, I do get episodes of low bp since the post partum period. The bottom line--POTS is not defined by bp, but by heartrate changes from being prone to standing. Some people have high bp, others low, others a combination. I do not believe it is likely to have a false positive TTT--false negative, perhaps. But, I would leave that question to a physician with expertise in autonomic dysfunction.

Regarding meds--for how long did you take them? With high bp, I am surprised the bb made you feel worse--only b/c the usual problem with a bb is that it knocks bp down to a point that can cause some people more symptoms and this is more likely to be a problem with people with low bp to begin with--but I am not doubting you. Not all POTS patients can tolerate bbs. Some try several different ones before they find one that helps. SSRIs take weeks to adjust to, and many POTS patients feel worse in that adjustment period.

As has already been said, there are many other drugs to try, in consultation with a specialist. I hope you can find one in your area.

Take care,

Katherine

Link to comment
Share on other sites

thanks, Katherine. It is nice to hear from someone with a similar experience. I guess we all just have to take it one day at a time. I'm just trying to deal with the heat and humidity right now as well as staying hydrated since I want to pee about every hour and then get up 6 or 7 times at night to pee. :P I'm drinking tons of Gatorade and my insomnia is finally getting better so that is something.

Link to comment
Share on other sites

Hi April -

Welcome. While I cannot relate to all of your history (I've never been pregnant) there are elements that still definitely ring true. And whether or not you have a type of dysautonomia, an unknowledgeable doctor & your informing yourself does NOT mean you're crazy! Even after I was diagnosed, a neuro at a very prominant hospital tried to get me onto a psych ward b/c she felt that my new symptoms simply couldn't be part of the dysautonomic picture. She wasn't a specialist & as soon as I got back to my doc who knew what was really up he could hardly believe that she was so clueless.

If you look through the board, you'll find that lots of folks are intollerant of lots of different meds for lots of reasons. And to complicate things even further it can change over time. Or day to day. Most of us are able to find some combo of meds &/or lifestyle changes to help our symptoms at least a bit, even if it's a little bit. So...I would encourage you to pursue the dysautonomia clinic; most on here would be jealous of a resource so near by. Even if you're not certain yet about your money or insurance you should be able to make a call to pursue an appointment as there may be a waiting list & you could then figure out your insurance in the meantime.

Re: the high blood pressure, it may not be the "norm" but it is not exclusionary. Personally mine is on the low side of normal with excursions lower & occassionally higher. But there are more than a few people with high BP too. I don't think you mentioned your heart rate....do you know if it is high?

Good luck & hope you're able to get some answers soon.

:-)melissa

Link to comment
Share on other sites

Until a few months ago, my bp was never below 160/100. I am older than you and I don't think mine was pregnancy related as I have been sick all my life, but there are people who do run chronically high bp's and it's part of the picture for them. Welcome by the way! morgan

Link to comment
Share on other sites

Hi April! I have POTs diagnosis with high BP. I also tried betablockers and felt much worse on them. Not sure why but it just didn't work for me. I just felt SO sick while taking them with absolutely no change to symptoms, blood pressure, or heartrate. I also tried florinef, and midodrine (for the vasoconstrictor properies) with no success. I did so poorly on them and was really disappointed that they didn't work! I had the same reaction to the IV med to speed up the heart, they said mine went up to 300bpm but my BP went really high. It was explained to me that when my heart gets going too fast, circulation is extremely compramised and my body responds by increasing BP to try to push the blood out to the extremeties. Right now, we are trying an exercise program to see if it will help build up blood volume and improve the vasoconstriction of the vessels in the legs. I am doing recumbent exercycle three times a week and trying to do a short walk once a week. I hope this helps you out a little and I hope you will consider checking out the dysautonomia clinic that you mentioned. Perhaps they can offer something to help with your symptoms. Take care! Laura

Link to comment
Share on other sites

thank you all for the responses. Yes, my heart rate stays high. It usually is between 80-90 while resting but can be well over 100. When I am sick my symptoms are 10 times worse. If I have a cold or virus or just don't get enough sleep, I feel terrible and my heart races constantly. The last time I was sick my heart rate stayed at about 120 beasts per minute while at rest and I was so out of breath that I could barely talk. I felt like I had been running a marathon. I just got my insurance packet today and it will be less than 30 days until I get benefits. I will try to get in to the dysautonomia clinic if my insurance will cover it. I don't know about the pre-existing condition exclusion. Technically, I have been diagnosed with dysautonomia but then another doctor said I didn't have it and I haven't been seeking treatment for it at all so I'm not sure if I can get away with it or not.

I do believe that I have dysautonomia. I just hope one day I will find some methods/meds that work for me. I use to be in really good physical condition before the pre-eclampsia, bed rest and illness but now I am in horrible shape. I really am itching to start working out again but I have such an intolerance to physical activity now. I joined a gym last year but got scared because every time I used the treadmill for about 30 minutes, I would get off extremely dizzy with a headache and my heart rate gets really high with even very light activity. Lifting anything heavy makes my heart pound really hard and get dizzy. Maybe I can do a light routine and build myself up slowly.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...