Everyone thinks it's driving anxiety but...

Discussion in 'Fibromyalgia Main Forum' started by mcsnick, May 23, 2008.

  1. mcsnick

    mcsnick New Member

    I posted this on another forum, but someone told me to come ask over here as you guys might have some ideas also. I am desperate, and am grateful for any direction you can send me in. Here's my story:

    I am a 28 year old female, in good health. I have no driven since January. When I drive, or am in a car, I start having weird sensory issues that make it impossible for me to drive. I
    -feel like everything is whizzing by me too quickly
    -feel like I have to shake my head to stay alert or awake
    -feel like my brain can't keep up with my eyes
    -feel like I am in a daze that I can't break

    The tests I have had done:
    -CT scan, blood pressure, blood sugar, EKG
    -tested for vertigo
    -eyes tested- got special lenses with prisms

    I have been seeing a psychologist b/c everyone thought it was anxiety. We have tried
    -anti-depressant/anxiety drugs
    -beta blockers
    (nothing worked)

    If anyone can shed any light I would be so grateful. I am getting depressed not being able to drive and depending on other people :(
  2. msbsgblue

    msbsgblue Member

    No, I do not think it is anxiety.

    This began with me not long after I got sick and before I knew what was wrong with me. One of my first symptoms in fact.

    You are the first person I have seen mention this.

    Here is how I describe some of mine. If I am going throught he wooded area for instance and sun comes flashing through branches I get almost dizzy, not actaully, but it makes my eyes feel weird.

    I am driving along and it is like my body is ahead of my brain or my eyes are ahead of my body.

    I am driving and actually get a physical feeling like I am dazed or cannot focus right which in turn is sort of like feeling dizzy without th spinning.

    Is that part of it with you?

    A lot of strange sensations. I do not drive anymore, have not in 5 years because of this.

    Also another phenomenon with me is if I try to sit outside in the late evening and it begins to get pretty dusk, I get that same sensation or visual thing. If I don't go in it almost makes me sick to my stomach.

    One last one, if I go into a dark room and sit down in front of the t.v. with it on the same thing happens. In addition, sometimes I can see what looks like smoke circles moving ever outward from the inside circle.

    I am glad to find someone who maybe understands. No one else ever has.

    I think it is neuro symptom of our illness. I have other types of neuro symptoms too from time to time.

    Sorry you are having this too.
    [This Message was Edited on 05/24/2008]
  3. frango2

    frango2 New Member

    This is quite common in Lyme and other tick borne infections, which is what caused my illness. Now I am dealing with CFIDS as a secondary diagnosis.

    I have had CT's, MRI's, EEG-abnormal- showed seizure activity. Been to vestibular rehab. They told me that what was causing this was something called Peripheral Vestibular Damage. Most people can filter out the other cars, trees, etc., going by. When people have this vestibular damage you are not able to filter out the other things so it causes problems driving and for me reading, as well. They had me do some tests that showed that I had this damage.

    One ENT/Neruosurgeon that I saw felt that it was not an ENT issue but rather a mild encephalopathy that would not show up on an MRI, but could cause these problems.

    What has helped me a little is the short Methylation Protocol. I was in sales... in my car all day long. Now I can only drive a few miles at a time, but the Methylation has gotten me back to feeling comfortable behind the wheel, where as before I felt that I should not be driving at all.

    It used to feel like I was "drunk" all the time.

    I hope that helps!
  4. mcsnick

    mcsnick New Member

    YES!! I almost added this symptom, but at the last minute didn't. I was going to say..... when the light flashes between the tree branches, it makes me feel like... my senses are being overstimulated. It makes me feel, not quite dizzy, but just like my brain is going to shut down. That is just what you said with the branches thing! I have to say that I am really feeling sad that there may be nothing I can do :(
  5. mcsnick

    mcsnick New Member

    Also, did you ever get a diagnosis of anything?
  6. frango2

    frango2 New Member

    I think we posted at the same time. There are things that you can do and I am getting better...
  7. mcsnick

    mcsnick New Member

    How do I get tested for Lymes Disease? Also, could you tell me more about the method you mentioned? Where can I read more about it?
  8. msbsgblue

    msbsgblue Member

    Diagnosed, I have Fibromyalgia. I think a lot of us have neurological symptoms too. I know I do, oh honey I had over $25,000. in tests back when this all began, took some time to determine I had FM.
  9. MsE

    MsE New Member

    I've been dealing with this ever since I came down with this DD. Not anxiety!
    I curtail my driving to my own area.
  10. Pwr2Heal

    Pwr2Heal New Member

    I have this as well. I didn't think I'd ever find anyone who could relate to this. My husband and friends just look at me with blank stares when I told them. My ND thought I was nuts. I don't mention it anymore. It seems so weird and I thought I was the only one with this issue (my 2 IRL friends with CFS don't have this issue).

    But, I really relate to all of the descriptions posted. I used to commute an hour to work each way every day and it was so scary. Everything was blurry like my brain couldn't keep up with processing what my eyes were seeing. If I turned my head to check a blind spot it was really freaky. Sort of like being dizzy but not. My head would feel just weird, kind of like things were spinning but not. Sometimes it felt like I was in slow motion or something.

    The flashing light of going past trees is really weird. I can relate to the person who said it feels like their brain is shutting down. That's a good description of how I feel.

    I now primarily work from home (which is good for saving gas $, too!), but I do still drive some and this has gotten better for me. Some days I almost feel normal, other days it's still bad. I have CFS with mild FM. I have done a lot of things in terms of treatment so it's hard for me to say what may be making it better.

    It was interesting to read Frango's dx of Peripheral Vestibular Damage for this. And I'm glad to see that Methylation supports are helping! I've been working on adding those in, too. Hopefully they'll help me as well!

    I'm sorry that you all are dealing with this as well. Thanks for posting this thread, mcsnick. I never would have known that I wasn't alone with this weird issue if you hadn't posted your question.[This Message was Edited on 05/24/2008]
  11. mcsnick

    mcsnick New Member

    I appreciate everyone's responses so much. Just some random thoughts--
    I used to describe it to people as a feeling of dizziness, but people misinterpreted that to mean spinning, which I never felt. It was more just that my eyes were seeing wrong and my brain wasn't interpreting right and I felt like I was constantly trying to stay awake-- like the moment right before you nod off.

    I have never considered fibromyalgia, since this whole time I thought it was all in my head-- anxiety. I should have known.
    Just in the last half an hour or so I've been researching it. I have absolutely no joint pain or sensitivities like that. No sleeping troubles. It is only this one problem when I am in a car. Does that mean that it can not be fibromyalgia? What kind of doctor do I go see to discuss this?

    Thank you everyone. It is comforting to know that someone understands.
  12. frango2

    frango2 New Member


    I have all the problems you mentioned above, but I don't have NMH. Since I started doing the Methylation protocol this has gotten much better. It also go much better for me after being on Ketek for about 8 months and then Zithromax/Mepron for 6 months, but I'd say hands down the short Methylation protocol has helped these symptoms the most.

    mcsnick- Please get tested for Lyme at Igenex labs in Palo Alto, CA. If you call them they will send you a test kit which you can take to your Dr. They will draw the blood and either they or you can send it back to Igenex. Igenex will send the results to your Dr. If you have any positives at bands 18, 23-25, 31, 34, 39 , 83 or 93, then you have been exposed to the bacteria that causes Lyme disease. ( this will all make sense if you get tested and see your results )

    My Dr. specializes in CFIDS, Fibromyalgia, and Lyme. She tests everyone for Lyme and she told me that 80-90% ( can't remember which one it was, but I actually think she said 90%) of her CFIDS and Fibro patients test positive for Lyme. I am not trying to start a debate here and my Dr. is very good and very will respected. I can only comment on my history, but Lyme is what kicked this all off for me.

    Not everyone who gets tested at Igenex tests positive. So, don't believe it if anyone tries to tell you this. I know many folks who do not test positive for Lyme at Igenex. I personally feel it is a root cause of many of these illnesses and I also think that many folks could be sick due to another insect borne illnesses called Bartonella, which is passed to humans by both ticks, and gnats (biting flies) and is different from it's cousin "Cat Scratch Fever".

    I saw the tick, had a rash, and then became seriously ill with all these issues, so in that sense I feel lucky to know the cause of all this for me.

    Do a search for Methylation or richvank on this board and you will find information about the short Methylation protocol. This has helped me the MOST with driving, but I have also aggressively treated Lyme and it's co-infections for over 2 years now with both high dose oral and I.V. antibiotics. I am so much better that I was 3 years ago when this all started.
    [This Message was Edited on 05/25/2008]
    [This Message was Edited on 05/25/2008]
    [This Message was Edited on 05/25/2008]
    [This Message was Edited on 05/25/2008]
  13. Doober

    Doober New Member

    certainly understandable to have this happen while driving.

    You are in a small confined area with windows and sometimes the windows themselves can sort of magnify the things outside the car.

    Also, with the windows closed and the light shining in will raise the temperature.

    If it helps, try having the air on the car at a cool but not cold setting. Some cars will increase the flow of air through the vents with one of the windows open just a little bit as long as you do not have the internal flow button pressed. This pulls air from the outside of the car.
  14. lca

    lca New Member

    Add me to the list. It's not only in the car though. The weird head sensations for me can happen anywhere. In my own home it's less often.
    This is so hard to describe, but it's like what I see and where I am are two different things. Sort of like in a dream. Floating, moving, and disconnected. It makes me nauseated and dizzy, but not the vertigo kind. Make any sense?

  15. frango2

    frango2 New Member

    Some days the waves are 3 footers, other days they are more like 12 feet...:)


    I also think the "does anyone not remember how they CFIDS/ME, please help me" thread that was started by rochar would be really helpful for you to read.[This Message was Edited on 05/25/2008]
  16. msbsgblue

    msbsgblue Member

    Honey take your email adress off the post. We are not suppose to do this due to security for ourselves, it is against the rules to post it up there.

    I will contact you this time since you placed it there, but please remove it now.

    No it is not anxiety, not poor blood circulation, or Lyme's I have had all this checked and rechecked.

    [This Message was Edited on 05/25/2008]
  17. mcsnick

    mcsnick New Member

    If it were lymes disease, wouldn't I have SOME other symptoms? I have no other symptoms of anything :-( No aches, no pains, no joint soreness, no tenderness, no trouble sleeping, nothing!
  18. mcsnick

    mcsnick New Member

    I'll go take a look. Thanks!
  19. frango2

    frango2 New Member

    There is so much misinformation about Lyme... and if people are getting tested by Quest or Labcorp then consider yourself totally untested for Lyme.

    First of all they only do the EIA or ELISA which is a very inaccurate test. If that is negative - which, most likely, it will be, they won't even run a western blot.
  20. kellygirl

    kellygirl Member

    has gotten better for me for the last 20 years I have had CFS/FMS/MPD.

    Still, if the car next to me is moving, I feel like I am moving and have a momentary weird feeling.

    Once, I experienced everything in the windshield looking flat. I lost my peripheral vision. It was an hour trip into a city. I am more comfortable on our country roads and highways that I am familiar with.

    I have hypnotized myself a few times forgetting where I was or where I was going. I tend to daydream in the car.

    All of this lasts for only moments, but when it does, it is scary.

    I am terrible with directions, but that runs in our family. No matter how often I have been somewhere, finding my way home is still a problem, esp. when I get turned around. At the mall, I even forget which way to turn when leaving a store. Of course, 3 sisters and I do have FMS.