Help Please ( On My Way To A Diagnosis )

[HopefulLady]

Hello everyone My name is Tara and I am new to the forum. I have for the past 10 years dealing with pre-syncope/dizzy spells, sinus tachycardia, BP swings which can be normal one minute and high the next. Pressure like feelings ( Not really Painful) in my head when I stand it feels like I am on an airplane and my hearing will fade out and the pressure lasts about a minute sometimes this happens if I change positions to fast as well. Hot flushing feeling in face, parathesia (burning sensations) in the back of my head and face when having these attacks . Tired all the time sleeping 12 hours a day. Vision changes (seeing black dots) and blurry vision during episodes. Gastro IBS like symptoms. Heat intolerance ... These spells seem to get worse in hot weather, I have to be under under a fan or sleep with the AC on blast all the time. I also experience a worsening of symptoms closer to my menstural cycle. I notice when I first stand it feels like my heart is pounding out my chest and continues to do so until I lay back down very uncomfortable feeling. Feels like my body in constantly dumping adrenaline. Waking up with body tremors sometimes they can happen at any time of the day but I will feel like my body is shaking and I can't control it. I also notice a worsening of symptoms after I eat especially a high carb meal or sugar. Highly sensitive to stimulants of any kind. Can't consume caffeine period. I also am very sensitive to medications in general especially any medication that messes with my nervous system. I have lived with this for 10 years and have been told I was having anxiety attacks and that I have been causing this to happen to.

When did it all start?

Well I am now 31 however after the birth of my second child 9 years ago I was 21.. The second day after I got home from the hospital I was using the bathroom. I remember standing up and feeling really dizzy my vision started to dim and I felt really hot and my heart was pounding. I crawled to the phone and called 911. After sitting for a few minutes the dizziness started to go away. I was able to walk to the kitchen and drink a glass of cold water and splashed cold water all over my face. I admit i was scared this was the first time I had ever felt dizzy or faint. Even during my pregnancy I was never dizzy never had any complications other than gestational diabetes which went away after I gave birth to my 2nd child. When the EMT's arrived they said my blood pressure was a little high and asked me if I wanted to go to the ER. I said no because I was feeling better at that point. ( And convinced myself this happened because I had just had a baby).

Over the next few months I started to get more of these same spells that is when I started to really worry. So I went to an internal medicine doctor. I found myself leaving work all the time and these spells were taking over my life. At the time I didn't link them to standing or being on my feet for a long period of time. I was so scared of what was happening to me and was so disturbed by the pre-syncope/dizzy spells that I was not even paying attention to what my heart was doing.

After a full physical standard blood work CBC, thyroid panel, 5 hour Glucose Tolerance Test, ect the internal medicine doctor said I was slightly dehyderated, and said this was all caused my anxiety attacks. So she attempted to put me on paxil, and a beta blocker. I ended up back in the ER because I was still having problems and my body was not reacting well to the medication. So she then prescribed me EFFEXOR XR 75 mg. This drug is the ONLY drug that I have been able to take for this and it seems to control most of symptoms and almost fainting spells. When I stand up I would no longer feel like my heart was racing out of my chest. So I finally accepted that it was anxiety and sought out a therapist. Even though in the back of my mind I just knew something else was going on. It took about 4 months for my body to stabilize after starting the effexor and as long as I took it I was almost 100% normal again. But everytime I would get off this medicine after the nasty withdrawls my symptoms would return after 4 months. Bringing me back to the doctors office for them to scold me for getting of the medicine and telling me that I was having panic attacks and I needed to stay on this medication.

Even though I knew it was the symptoms that was causing the anxiety not the other way around. So I listened to my doctor and went back on the Effexor XR. My symptoms would then stabilize and I would feel about 95% Normal again after a few months. Well within 10 years of trying to go off this medication 3 times. I knew after the 3rd time something was not right. So I fired my regular doctor and found another internal medicine doctor. From this point on I was about 4 months off the Effexor for the 3rd time in 10 years. My new Internal doctor/endocrinologist/cardiologist ran a whole bunch of tests which included

1. EKG - Showed Sinus Tachycardia.

2. Abdominal/ Pelvic CT- NORMAL

3. 24 Urine looking for Pheochromocytoma/Carcinoid - Normal Full endorcine workup all normal!!

4. CT of head- NORMAL

5. Stress Test - Normal BUT my baseline HR before I even started to exercise was 132!!! HR got up to 184 after 8 minutes of being on the treadmill.

6. Echocardiogram- NORMAL

7. 24 holter- Normal ( Here again my mean HR was 95... the lowest my HR got was 69 and the highest was 147!!! And I did not do any exercise that day so that 147 HR must have been when I was up to use the bathroom or to get something to eat. Because I slept most of the day during this test unless I got up to eat or use the restroom.

8. Full Electrolyte pannel- Normal

9. Chest CT - Normal Chest and Lung CT w/contrast Chest Xray -Normal ( They were looking for Pulmonary Embilolism LOL)

10. Cortisol levels normal

11. Thyroid t3, t4, tsh - NORMAL

12. Nurse in ER saw a dramatic Jump in HR sitting 96 Standing 147 - Bp Stayed the same and only had risen slightly upon standing. So she says wow your heart rate does jump dramatically when you stand! I said you think? LOL But she says this can be caused by dehydration. In any event I was not dehydrated.

Basically I have had every Test known to man ( Just About) LOL and everything comes back NORMAL and here I am sitting with a folder with 10 years of tests performed by several specialists . EKG's always showing sinus tachycardia MOST of the time. And literally I am not able to function off this EFfEXOR because I am constantly sick and dizzy and feel like I am going to faint. (Even though I have never actually fainted) I have felt like it on many occasions and it's truly terrifying. In and out of the ER all the time trying to find out what was wrong with me and never got any logical answer and was told to go home and take ativan and relax and see a therapist LOL.

So why I am here today?

Well after getting sick and tired of doctors telling me it's all in my head I am having panic attacks which I know now were not. I started to research my symptoms and found POTS. I took my laptop to the doctors office (regular internist) and told her this is what I have and everything that I have been going through for 10 years this is the only thing that makes sense. She agreed after several testing ( she was always concerned with my HR and was trying to figure out why my HR was always elevated in her office that she thought my issue was Autonomic.

So... I found a doctor in Atlanta which is where I am Dr. Thomas Deering who is an electrophysiologist but also seems to understand dysautonomia to some extent.

I have a tilt table scheduled for Monday May 10th at 1:30 @ finally feel like I am going to get a diagnosis. He also has me wearing a 30 day event monitor.

My concerns:

I have been back on the Effexor for 8 months. And I am worried that the tilt table is not going to pick up the worst of this **** thing because it MASKS my symptoms. I can almost function on it. But Dr. Deering does not want me to stop taking it.

I am a bit confused as to why he would not take me off this medicine prior. Because It does control my HR and pre-syncope spells most of the time. My heart rate only gets up to 100-106 now when I stand instead of 130+. And I hardly ever get dizzy anymore because of the Effexor.

I want this doctor to see my symptoms at it's worst and he is not going to see it while I am on the effexor.

Please Help I am not sure what I should do???

Your time is very much appreciated.

Thank You All for this wonderful community I would have never been able to get to this point without reading through here and all the info posted about dysautonomia.

Tara

[Simmy]

First, Tara, welcome. You are not alone. Reading your story felt like I was reading my own, except for the childbirth thing. It always starts out as an anxiety diagnosis with all tests 'normal', until we do our own research and show the evidence. It's like we're guilty until proven innocent. I'm glad you discovered the truth.

I can imagine your new doctor wanting to see the results of your TTT while still on your medication in order to compare them to a TTT without meds, but you've not had one before and it doesn't sound like there are plans for another one after some time medication-free, so I'm confused too.

It sounds like the Effexor is working well for you when you're on it, how bad are the side-effects?

The only advice I can give you is to make certain you are lying down on the tilt table and relaxed for the FULL 15 minutes before they begin to raise you, to get the most accurate difference between down and up heart rate and blood pressure readings.

Good luck and I hope you get the answers you're looking for.

[HopefulLady]

First, Tara, welcome. You are not alone. Reading your story felt like I was reading my own, except for the childbirth thing. It always starts out as an anxiety diagnosis with all tests 'normal', until we do our own research and show the evidence. It's like we're guilty until proven innocent. I'm glad you discovered the truth.

I can imagine your new doctor wanting to see the results of your TTT while still on your medication in order to compare them to a TTT without meds, but you've not had one before and it doesn't sound like there are plans for another one after some time medication-free, so I'm confused too.

It sounds like the Effexor is working well for you when you're on it, how bad are the side-effects?

The only advice I can give you is to make certain you are lying down on the tilt table and relaxed for the FULL 15 minutes before they begin to raise you, to get the most accurate difference between down and up heart rate and blood pressure readings.

Good luck and I hope you get the answers you're looking for.

Hi Simmy Thank You for your warm welcome! It is so amazing to actually talk to someone who can relate and has been through this. It's been a long journey and I have learned so much along the way that I no longer tolerate a doctor who can't figure it out so it must be the patients fault and it's all in they're head. Seems like most of us have been through this same thing.

As far as the effexor goes. I was put on it by my first doctor thinking it was anxiety attacks not knowing until 9 years down the line that it was actually used off market to treat dysautonomia and other things as well .. I have tried paxil - bad reactions to it. Lexapro broke out in full hives, buspar had hives from that too. I couldn't take prestiqe, it gave me awful side effects. Ativan lowers my blood pressure too much i also get hives from that as well. I have a very sensitive nervous system and effexor the extended release form is the only one that my body will tolerate. Right now I am on the lowest dose 37.5 milligrams the highest I have been on is 75 mg. I have been on it on and off for 10 years and it has given me my life back. I only had side effects when I first started taking it which were dizziness ( which I was already used to so that was normal for me ) LOL ... Headaches, sweats, and weird dreams. It took my body about 4-5 months to adjust and for any side effects I was having to vanish. Now I feel normal most of the time I rarely get a dizzy spell and all of the 100 symptoms I was having have disappeared. But once I go off it they come back full force and all **** breaks loose again with my body. I know with these snri's and ssri's you have to start on the lowest dose and work your way up especially people like us who are already sensitive to medications. But even at the lowest does 37.5 milligrams my symptoms are well controlled. But from what I have read not everyone has luck with medications. So I am extremely grateful that something is helping me live a normal life. I still have good and bad days but 95% of the time I am able to lead a normal life without the pre-syncope spells and tachycardia is controlled better.

Thank You for your advice I really appreciate everything and if I can help in any way please let me know

[issie]

Hi Tara,

I think you will like this site. I've learned so much myself in a short time. I too, agree with Simmy --it sounds like my story. I think you've figured out what is wrong with you. Getting the pieces of the puzzle put together is so uplifting and encouraging. Then you can know what to treat. I can't give you advice about your med's, you have to make that decision. I don't think you have time to tamper down to get off them though. You don't want to go cold turkey. That will throw you for a loop. Maybe you should call your doctor and bring up your concerns with him. Tell him what you are thinking and that you want a good baseline to start with. Maybe he will delay the test. (Just thinking out loud.) Hope you get your answers!!!!

[HopefulLady]

Hi Tara,

I think you will like this site. I've learned so much myself in a short time. I too, agree with Simmy --it sounds like my story. I think you've figured out what is wrong with you. Getting the pieces of the puzzle put together is so uplifting and encouraging. Then you can know what to treat. I can't give you advice about your med's, you have to make that decision. I don't think you have time to tamper down to get off them though. You don't want to go cold turkey. That will throw you for a loop. Maybe you should call your doctor and bring up your concerns with him. Tell him what you are thinking and that you want a good baseline to start with. Maybe he will delay the test. (Just thinking out loud.) Hope you get your answers!!!!

Hi issie ... Thank you for your input. I am really thinking about rescheduling this tilt table test for next month .. And working with my regular doctor to wean off this medication over the next few weeks and then go back for the test. I know that it has to be done. I am just terrified of being off it again because my body will be a wreck but I know this has to be done if I ever expect to get a proper diagnosis. Because the effexor is def working and doing what it is supposed to do for me. And after researching this whole thing from my understanding before your tested for Autonomic dysfunction you must be off any medications that will interfere with the results of the test. Which is why I wanted to get some opinions. And I am afraid the only way to get the proper diagnosis I must come off this effexor first. I am going to talk to Dr. Deering on Monday and let him know my concerens and then we can go from there. Thanks Again everyone for your input!

[Angelika_23]

Hi Tara,

Welcome to the forum. Please don't take this the wrong way, but if you've found something to help why do you keep coming off of it? Are there side effects you can't handle, or something else you don't like? I don't understand.

My story sounds very much like yours, except I haven't found anything that helps me to the degree you are describing. I have been on lots of medicines and have had adverse reactions to many of them. Mine came after a bout of viral meningitis. I too have had many doctors say I have anxiety. I think it is sort of a rite of passage for us.

I guess I can understand wanting a diagnosis, I did my share of searching, but I did it to find a way to "cure me" if you will. It sounds like you have found something that works for you, and I am glad for you.

Welcome again,

Angela

[HopefulLady]

Hi Tara,

Welcome to the forum. Please don't take this the wrong way, but if you've found something to help why do you keep coming off of it? Are there side effects you can't handle, or something else you don't like? I don't understand.

My story sounds very much like yours, except I haven't found anything that helps me to the degree you are describing. I have been on lots of medicines and have had adverse reactions to many of them. Mine came after a bout of viral meningitis. I too have had many doctors say I have anxiety. I think it is sort of a rite of passage for us.

I guess I can understand wanting a diagnosis, I did my share of searching, but I did it to find a way to "cure me" if you will. It sounds like you have found something that works for you, and I am glad for you.

Welcome again,

Angela

Hi Angela

I came off it because I thought at least I was told that what I had was just anxiety attacks ... After seeking help for anxiety through a therapist and learning to cope with my anxiety( or so I thought) I wanted to get off the medicine all together and deal with my anxiety another way. I didn't want to be dependent upon antidepressents for the rest of my life for what I was told were just anxiety attacks. I kept coming off the medicine thinking I could handle my so called anxiety disorder without those drugs. Little did I know I had much more going on that just a panic attack. But I didn't make the connection until 9 years later until I started doing more research about my symptoms and what was going on. Anxiety does not cause one's heart rate to rise to the extreme when they stand. And then go back to normal once they sit or lay down. I would wake up after being well rested and stand up and feel like i was going to faint. These symptoms didn't add up to what they were telling me. And I didn't really make that connection until being fully off the medication. I would wonder why I was unable to function without it. If this was just anxiety I would not have these issues medicine or no medicine. I hope that answers your question.

[Angelika_23]

There is a lot of discussion on here about the "anxiety and depression" meds, and how some of them DO help with dysautonomia. Just because it is a medicine for depression or anxiety doesn't mean it doesn't have other uses too. I use Clonazepam, which is a medicine (I was told) for anxiety only, but I KNOW it staves off adrenaline issues for me.

So, I know how frustrating it is to be told you are having anxiety problems, etc. but if the meds really work, heck, stay with them would be my advice. You are lucky to have found something that works.

I hope you find what you are looking for,

Angela

[Poohbear]

Tara,

I don't know if this will help ease your mind or not but Dr. Deering and his PA's all understand the diagnostic criteria of POTS and NCS. In your case, I would not worry about coming off the effexor. There are likely other meds they are planning to use during the TTT to illicit a response, if needed, in your case.

If it makes you feel better, I would recommend FAXING a note (this way the Dr or other qualified person to give the right answer will see your note) reminding them what medication and dosage you are on and asking for clarification if they want you to come off of the med for diagnostic purposes.

[HopefulLady]

Tara,

I don't know if this will help ease your mind or not but Dr. Deering and his PA's all understand the diagnostic criteria of POTS and NCS. In your case, I would not worry about coming off the effexor. There are likely other meds they are planning to use during the TTT to illicit a response, if needed, in your case.

If it makes you feel better, I would recommend FAXING a note (this way the Dr or other qualified person to give the right answer will see your note) reminding them what medication and dosage you are on and asking for clarification if they want you to come off of the med for diagnostic purposes.

Thank You Poohbear ... This makes me feel a lot better. Dr. Deering did say they use nitroglycerin in they're office for this test. When He saw me for the first time. His nurse took my blood pressure and Hr lying down, sitting up, and than standing. At which point Dr. Deering came in the room and explained to me what Dysautonomia was, the causes of it, and then scheduled me for the TTT. I am actually thrilled to be having this test done so I can finally get some answer's was just concerned about the Meds interfering with the results. Thank You again everyone for your input and advice. I am so happy to have found this place.

[Elegiamore]

HOpefullady,

You said your testing with Dr. Deering was on 5 10 10. How did it go? Did they get you all diagnosed up? I hope so.

Poohbear has told me before that Dr. Deering was a place to go in Atlanta, but that it was the PAs that really know how to treat the condition. I called up there last year and was told that the PAs Pooh told me about were gone. I asked to speak to Dr. Deering's nurse, left two messages, but she/he never called me back. One of the people who answered the phone, however, seemed to be inferring that Dr. Deering was mainly diagnosing and not treating POTS and didn't do much with it.

Any input for me on Dr. Deering, please?

I am doing very poorly and now have left ventricular failure with hyperadrenegic pots (see my post); nobody seems to know what to do, as I need IVs but it causes breathing difficulties afterwards. Worse of all, NOBODY will treat me out of fear and are refusing to keep giving me IVs when I need them because of the LVF condition.

Dr. Deering would be in network for me and would save me thousands of dollars. Thank you for your thoughts.

This site is a wonderful place, Hopefullady, and I know you will get the guidance and support you need to make things better. Good luck and God Bless.