Neurological condition

Is it normal to feel that this is really some bad neurological condition that is slowly killing me, and the doctors just haven’t found it yet?! I say this because I get tingling a lot in my fingers but the neurologist says it’s low grade carpal tunnel but I’m 27 and don’t do a lot of repetitive motions do i don’t know if I believe him. I guess I’m just scared that this is really life threatening, I don’t know why else a previously healthy 27 yr old wouldn’t be able to kick this “thing”. I never had migraines or any motion sensitivity at all. Was on three cruises one which rocked so much nearly fell out of bed, didn’t bother me the slightest, so is it really all of a sudden migraine or something else…

Hi,

I just had to reply to your post. I just sent an email to a friend today saying the exact same thing. I have said that this is slowly killing me for years now. I am going on six years of this. I have had every test under the sun and gone to some of the top doctors for this sort of craziness. They have assured me that death is not around the corner. It just feels like it sometimes.
I think that when I am in a funk with the symptoms, I find it hard to believe that I am not dying of some awful disease. When I manage to get through a day and get something accomplished I feel more sure that it is not life threatening. I don’t think we are alone in our feelings. It is a very frustrating condition and not easily treated. Hang in there. Tomorrow may be a better day.

Kat

I can certainly understand what you are saying. I want to scream at my doctors - how come you can’t figure out what is wrong with me? I keep feeling worse and worse yet I can’t even get two doctors to give me the same diagnosis. It is so frustrating.

The only tests I have had are VNG, hearing, MRI and ct scan. I’ve seen 6 different doctors and none of them has bothered to try to find the cause of this or do any further testing. It is bringing out the worst of my hypochondria.

In the beginning when I didn’t know what was wrong with me, I was worried sick I was dying or was going to have MS or something terrible. It really exacerbated my anxiety and I thought if I did get some terrible prognosis, I would just check out of life…I didn’t want to live watching my health deteriorate. But after reading so much on this site, and earning what I have…I just chalk it up to some goofy genetic bullsh**, and it really sucks, but I don’t worry about it killing me. I just get annoyed and sometimes pissed and sometimes I cry…but I also have good days, so I try to take it a day at a time…
You are probaably just fine with some brain cooties that suck and they haven’t figured out how to fix this migraine condition…or whatever chemical stuff it is. I never had a headache before either…hard for me to believe it was migraine when I had no family history or any headaches…
Hang tuff,
kelley

I often have the paranoid delusion that there is something really wrong with me that the doctors are missing.

My paranoia has some basis in reality because when I was a teenager I used to get very sick every month and be on the floor throwing up, my white blood count would shoot up, but the doctors told my parents it was psychological; two years later a surgeon at the Cleveland Clinic decided to do an exploratory surgery and he found that I had bands restricting my small intestine, peritonitis on the lining of my body cavity, a burst appendix, and that every month I was having small bowel blockages, so they had to take out part of my small intestine, then my lung collapsed, and so on. I had two major surgeries at age 19 and 23. And the doctors originally told me it was all in my head. No wonder I distrust the medical profession.

But I was recently shown a study done in Germany about MAV (actually about Chronic Subjective Dizziness) and it showed that when they followed up patients after 8-10 years, it was NOT the case that their symptoms were later found to be caused by some other condition like MS, stroke, etc. Rather, this disorder is something that stands alone and is not linked to some ominous broader problem. So that gave me some comfort, and I hope it gives you some as well. Listen, this shit is bad enough on its own without also being a harbinger of some dreaded underlying condition!

I understand, when I was at my worst, I really thought I was dying. I was so dizzy and anxious, I wasn’t eating, I was losing weight, I could hardly care for my children and I’m 27 years old too. I kept telling myself, how could I be constantly dizzy? I thought that can only happen when your like 80 years old. I never knew about MAV till about 6 weeks of being dizzy and researching. Even with a history of headaches and family history of migraines(My 10 year old son has been getting regular headaches for a couple years now :() I still found it hard to believe, but since I have been having better days with the help of medication, and trigger avoidance, I know it has to be migraine. I think it’s just such am awful illness, that it really is hard to believe you can feel so ill sometimes without dying. I think you should read the book “Heal you Headache” and “The migraine brain” I’m reading this one now. It really explains a lot about how migraine is and how it really is a neurological condition, not just a headache or something you can “turn off” I still find it so crazy that there really is no cure, most things in life you pop a pill and can feel better right away. This takes time and lifestyle modifications. I’m still learning that, I tens to wanna overdo myself when I’m feeling good, then I start having some symptoms come back and Im reminded how I am still different, regardless of how good of a day I’m having. I think the key is to find a good doctor who is willing to work with you and who understands this. I’m still looking for one, I have a good doctor who has helped me, but he doesn’t know much about how serious this can affect someones life and wants me off medicine as soon as I start feeling good and I’m not ok with that. I don’t ever want to go back to my worst. I’m sorry you are going through this, I hope you can find relief soon.

This is some really scary stuff. It’s hard to just “roll with it” when we feel as out of control as we sometimes do with this crap. More than once in my journey with this I thought I might be having a stroke (during some particularly strange visual aura situations, before I found out I was a migraineur).

There’s a concept I’ve tried to adopt, and I know this will sound bizarre - but sometimes the acceptance of facts I can’t change gives me a feeling of dignity and more important, some peace, and the best embodiment of that, a “stance” that I almost feel myself assuming in my head, is that of Obi Wan Kenobi as he faces Darth Vader for the last time and stops dueling and smiles and holds his light saber up in front of his face, actually achieving more control over things by not trying to control things, if that makes any sense.

I have had this on and off for 26 years, more than two thirds of my life, and have often felt I must be dying it feels so bad. In fact today is one of those days. I’ve been doing so much better recently especially since starting Lyrica but had a major crash recently. I’ve just been started on topiramate.

All I can tell myself is it hasn’t killed me yet!

Same as you Dizzyizzy, had this for over 25 years and I am still alive and kicking!

Christine

Brain Cooties. I am still laughing.

Kat

I started feeling like I was dying about 8 weeks ago with a wide variety of symptoms. The doctor said it was generalized anxiety disorder which manifests these symptoms through hypervigilent awareness. I have learned to accept that there is a real problem but not what I though. I have been uppIng my exercise, meditating, and taking an ssri to correct the biochemical problems related to my Mav. It seems to have helped with the perceived symptoms greatly.