2 months of dizziness, anxiety, strange feelings. Original dx of VN was discredited.

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Hello all,

I am an otherwise very healthy person who lifts weights 3-4 days per week and plays competitive basketball 2 days a week. On May 14th 2016 I was driving for a quick stop into work. All of a sudden my legs and hands became sweaty, I was confused as to where I was or where I was going and eventually my vision blacked out. I was able to safely pull over. When I came to (seconds, not minutes later) I went straight to the ER. They diagnosed me with a panic attack and dehydration.

2 days later it happened again (but I didn't black out). This time the ER doctor told me I may had Vestibular Neuritis. My primary care doctor later agreed. I took 2 weeks off work where I was unable to do ANYTHING but lay in bed or mope around the house. My life felt like a dream. I was sent for VRT and did it on and off for 1 month. I slowly became better, but there has always been a persistent brain fog or strange mental feeling that will not go away. On occasion I will have a blip where I feel I am going to pass out but then it goes away. I am also dealing with insomnia that is always followed by a bad day. It is present about 4 days a week and the other 3 days I feel *mostly* normal.

Last week July 14th 2016 (2 months after the initial problem started) I had a VNG with a neurotologist and saw a neurologist afterwards. The VNG came back perfectly normal and the neurologist now thinks VN is not the cause of my problems. I just had an MRI but results are pending. We will be looking @ cardiac, thyroid and autonomic nervous system workups to find out why I feel so awful. Luckly my providers are all pretty quick and I have amazing insurance.

My question is: Has anybody been diagnosed with VN or labs (which sounds awful, but at least it slowly gets better) and then had the diagnosis pulled out from under them? My anxiety (which has been a constant since day 1 of my problem) has gone through the roof because I might have something worse than originally thought! I've never had a single bout of depression/anxiety/health problems in my 30 years and I can't stop freaking out!

 

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  • Posted

    I do not have VN, but wanted to respond.

    It's good you are getting the proper workup and MRI. the fact that you black out and come to is strange for vestibular disorders, I believe; but I am no dr. I do have an acquaintance who loses consciousness because of a rare type of migraine, called hemiplegic migraine. But she has other symptoms as well, such as tingling and numbness. Have they ruled out panic disorder? Rarely, someone can pass out from hyperventilating and they may not know they are doing that. Again, it's good you're getting the full workup. Too many are immediately passed off as anxious when something else could be going on. Definitely look into metabolic things like thyroid and adrenals....good luck and keep us posted.

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  • Posted

    Oh, and if your anxiety is si bad, why won't they give you something for that while you are awaiting testing? It would also kind of help to show if anxiety is the cause, if an anti anxiety med took away your symptoms.

    As a person who has had panic attacks, your description sounds very muck like what I used to have. And, yes, it can come right out of the blue, when life is good and you are happy. I was also worked up for tons of other things since anxiety is a clinical diagnosis of exclusion. This was all years before my recent vestibular issues, so I do not see a direct connection.

    I have taken an anti anxiety medication for 16 yrs now, that also happens to be a vestibular depressant, so it helps with my dizziness.

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    • Posted

      Thanks for the quick reply! I really do appreciate it!

      My primary care doctor is willing to start me on an SSRI and I've actually said 'no' for the time being. It is something I am willing to consider next time I speak with her, but the side effect profile had scared me off in our past meetings. If nothing is found in the next battery of tests I think I will have no choice but to give it a shot. I do have alprazolam 1mg for when my symptoms bubble out of control, but I have only taken 7-8 total in the 2 months I've had them. They do seem to help get me to calm down and especially to sleep.

      The issue with dx is that my doctors don't think I fit the "normal" panic disorder patient. My heart rate at rest is 40-50 bpm and my blood pressure during my 3 ER visits averaged roughly 105/65. These visits were during symptomatic periods. When I am feeling very "anxious" I tend to measure my HR and it does not go above 60 (unless I am in the middle of exercise) even though I feel like my heart is racing! My neurologist won't rule out anxiety/panic disorder, but because of the lack of HR/BP changes he thinks it is more cardiac/metabolic/autonomic related.

      The silver lining is that because my lifestyle, home life and vitals are very healthy they are taking the workups seriously and not writing it off as psychosomatic, which is reassuring.

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    • Posted

      Hi Kyle,

      hmmm... yeah that low bp and heart rate are not typical for a full fledged panic attack.  But you do say you work out, so I guess it is possible that you are so conditioned that it is your normal to be that low, even with an attack.

      The low bp and fainting-like episodes make me think Addison's disease (adrenal hormone production issue), but there are also many other symptoms. Do you crave salt?  

      There is also a condition called dysautonomia, which used to be diagnosed a lot in people that were found to have a very common variation in the mitral valve, called mitral valve prolapse.  The myriad of symptoms they had, however, did not come from the slight valve deformity itself, but rather a malfunctioning nervous system.  There is lots on the internet about it, Mitral Valve prolapse syndrome.  I have mitral valve prolapse, and it is of no consequence.  But it is therorized that at the point the mitral valve is forming in the fetus, certain parts of the autonomic nervous system are also forming, and there may be some environmental or genetic alteration at that point.  It's been  a long time since I reasearched dysautonomia, but I believe one of the tests was a tilt table test.  

      I hope you get your answers soon!!!

      Lizzy

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    • Posted

      I haven't noticed a craving for salt, but in all honesty I haven't paid that much attention to stuff like that because I lost 15 lbs in the inital 2 weeks so I have been trying to eat non-stop to gain it back. I have gained half the weight back.

      I believe adrenal bloodwork is something that we will be looking at. My neurologist did also mention dysautonomia and I'm sure we'll be looking at that as well. He seemed to want to check out cardiac funtion first and then move on to those.

      I'm still waiting to see what my PCP says about the neurologist's dx. I'm curious to see if she agrees that VN is completely ruled out and if she feels like I should try SSRIs before or after all the testing coming up.

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  • Posted

    Last year I randomly started experiencing 1-2 second black out spells and I would get very hot and sweaty. It persisted for months and was very unpredictable. I quit driving because of it and etc.. It caused EXTREME anxiety. I also chose not to take medicine for the anxiety (still do not).

    Since then I have had a ton of blood work and tests to rule out different causes. I've had multiple heart tests, CT & MRI of brain, blood work for autoimmune diseases and regular stuff, etc.. and am now going to have an MRI of my spine. It was all normal except for my thyroid being low which I now take medicine for.

    I'm 29 yrs old so I'm not too far behind you and I know how scary this can be. I've spent the last year researching what the heck it could be and the only thing I've figured out was that it was an autonomic nervous system result. However, I also started experiencing, a few months after that, numbness in shins, forearms, & face as well as a few other symptoms. I seem to show signs of neuropathy and orthostatic hypotension (which is autonomic related) even though my BP doesn't fall. I think that's why now they think my spine is coming into play.

    I guess my point of all of this is to not give up. I have no freaking idea why this is happening to me but it is and the only thing I can do from here is keep going until I find answers. I've been to 3 neurologists, my PCP, eye docs, dentist, chiropractor; and the best advice I or anyone else can give you is if you don't feel something is right then go to a different doctor until you do.

    And please let me know what they find out.

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    • Posted

      Thanks for the reply!

      Definitely sounds similar to what's going on with me. I will feel completely normal and then feel almost like a "zap" where I get cold sweats and almost black out. Afterwards I will have anxiety and some nystagmus (I also had my eyes checked, they were completely normal with no prescription) for anywhere from a few hours to a few days. This doesn't seem to have a trigger. It will happen while I am standing at work, sitting on the couch watching TV or out for a leisurely walk. Surprisingly, I am able to play basketball for 2 hours out in 80F heat and I will feel great so it seems to go away during exercize as long as I am drinking enough water.

      My wife had similar symptoms as I do currently, but never had the actual blackout or vertigo I had at the beginning. It took 6 months for doctors to find out she had Hashimoto's and since taking medication for it she is back to 100% health. I really hope my timeline to a real dx is faster, but I guess it just takes that long sometimes.

      I'm sorry that you are having a similar problem. It's very irritating, especially at our young age believing we may have a long life of dealing with this nonsense. I will definitely keep you posted on any new results and please let me know if anything comes up with the spinal cord stuff.

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    • Posted

      Is your nystagmus up and down or side to side?

      And thank you! I will. It's very scary. I'm glad you're on a faster path than I am as it will be a year for me in August.

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    • Posted

      It's hard to tell, they only shake for a few seconds after trying to go from one object to the next. VRT therapist said it was side to side, but minor. VNG was normal so it doesn't sound like they're too concerned about it.

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  • Posted

    I hope they can get to the bottom if it!

    I reread your description of the first attack. The confusion about where you were and where you were going jumped out at me. My colleague had a similar attack when he was cycling a long distance and had to call his wife to get him. He was confused as to his whereabouts, and had the sweating and dizziness. It turns out it was hypoglycemia, and he has to eat many frequent balanced snacks a day.

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    • Posted

      I think they attributed that portion of the episode to fairly severe dehydration, which I am sure can mess with blood sugar levels. Even my neurologist was concerned with my fluid intake and told me to drink more water just in case. It just seems strange that one day of being dehydrated would set off a chain reaction of events in my body leading to where I am now.
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  • Posted

    MRI came back completely normal. Should lower my anxiety quite a bit, but back to the drawing board.

    Doctors want me to have a loop monitor installed. They think the on/off nature of my lightheaded episodes will be difficult to track without the implant. Seems a little hasty without trying an echo or something, but I'll just take their word on this one. They won't do autonomic workup until the loop monitor gives them some data.

    My PCP said she would consider which panels to run for bloodwork and get back to me. I asked specifially for thyroid and adrenal but we'll see what she says. She is still recommending an SSRI (Paxil 20mg) and I told her I am still reluctant. I have a constant "buzz" of feeling off, periodic faintness, some headaches, some insomnia but I am still able to function at work *most* of the time and I am able to play sports. The sexual and emotion-dulling side effects of an SSRI sound almost as bad as what I am going through. Anyone who has taken them for constant, low-grade anxiety from VN/dizziness/faintness have advice?

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    • Posted

      I am not a dr- your dr knows you best.  I will say that low dose Effexor is used for anxiety AND dizziness related to migraine (I don't know if that will be your diagnosis or not).  Two pieces of advice:  when starting any of these types of drugs, ask dr if it is possible to split the lowest dose, and take that for a week or two, then increase.  It was the only way I could actually take these, as the normal dose ramped my anxiety at first (which is somewhat common).  You may feel a bit worse before you feel better- that is also somewhat common with these drugs.  Second piece of advice:  When at a theraputic dose, try to stay on the lowest dose possible.  I think for Effexor that is 37.5mg.   This reduces the risk of experiencing withdrawals if/when you stop these drugs.   It all sounds scary, but they really are safe, effective drugs, and I think trying them is a good idea for you!  After a few weeks, you should be feeling better.

      I also had to wear and event monitor as I get lots of heart palpitations.  I have worn these 3-4 times in my life.  Everytime, my scary, horrible episodes were deemed to be BENIGN although i felt like fainting.  Good to rule things out, and I agree with the event monitor first before the echo.  Congrats on the MRI, and it really sounds like you are getting good care.

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    • Posted

      Thanks once again for showing support and for your advice.

      I'll definitely ask my doctor about splitting the dosage next time I speak with her and ask why she specifically recommended Paxil as opposed to others. I am pretty close to giving them a shot, I just want to make sure she spells everything out for me before I start up.

      I really do think the heart monitoring will come back benign for me as well, but that's part of my confusion: I have a very positive attitude about the future outcome of what I'm going through, but I still can't shake the foggy head and anxiety which is why I just feel like there has to be a physical issue somewhere in there.

      I'll keep you posted if any new findings come out. It;s very therapeutic to share this with people other than my wife or parents. My friends and coworkers are tired of hearing about this since I look normal unless I'm having a space out.

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  • Posted

    Hi Kyle,i had similar symptoms to yourself & after a year of suffering from dizziness,vertigo etc i finally saw a Neuro-Otologist which is an ear specialist..got a uncompensated Vestibular Neuronitis diagnosis..it took a long time to feel anywhere near normal & the VRT really makes your symptoms a lot worse to start with,its trully hell..

    After 3months of work i went back part-time at 1st & then built it up..but even though its bn 10yrs since it all kicked off i do have years where i feel pretty good & can work,socialize but ocassionaly if im ill with anything else i can get symptoms again which is really distressing..i really appreciate the days i feel good & normal..brain fog,lightheadness,vertigo,floating the symptoms are horrific...hope u can get to the bottom of it..if it is VN please stick to the Vrt as yuk as it is u will get there in time...it takes time..months.

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