Goose-Chasing Dysautonomia.

IMG_3387

Since I first got sick in June, I’ve been convinced that if Dr. House were real, he would totally take my case. Not because my illness is that much more interesting than anyone else’s, but because I’ve written 1,730 blog posts in the past six years – posts that surely have clues to help him solve my case – or at least think that he had and repeatedly nearly kill me to find out that his first five hypotheses were wrong.

And, it turns out, I was right. Except that I used my blog to figure it out. Maybe – unless I end up nearly dead.

Shortly after I wrote my post explaining where I was in the diagnosis process, I was indeed diagnosed with Dysautonomia (which basically means that my autonomic nervous system, who pretty much controls everything, is behaving badly) and POTS (meaning that if I stand up, my pulse dramatically goes up, causing confusion and delay.) The Doctor Who Shall Not Be Named did have one redeeming quality – he gave me drugs. He prescribed a beta blocker to help with the pulse issues, and despite the level of confidence I had in him for trying to take it away from me to prescribe something else then changing his mind, I did actually take it anyway. Because I knew it was a common prescription for POTS that could help, and I desperately wanted help.

It solved the pulse problem nearly entirely, which took care of many of the symptoms. But with the landscape of symptoms suddenly much more sparse, the ones left over were easier to spot. I began noticing how intense my head pressure was (as if my brain was swelling and pressing against the sides of my skull), and most interestingly, that I had a tender spot on the top of my head.

I realized that I had been subconsciously avoiding that spot when brushing my hair out of my face, because even that slight of contact was painful. And then I noticed that when it did get touched or mashed or bumped, that it caused an immediate onset of my symptoms – my vision would go blurry, I’d get dizzy, I could feel my pulse in my nose it was so hard, and my head pressure would go through the roof.

I spent some time pondering this sensitive spot and gave it a good while to go away. I assumed I must have hit it and forgotten, since it felt like a bruise. But after four weeks, it had just become more sensitive. And oddly, the sensitivity would fade at times, but be very pronounced at other times – especially on days that I didn’t feel good.

During some point in this self-analysis, I remembered that, months beforehand, I had hit my head in that spot twice in one week. I went looking for it, and sure enough, I’d blogged the incident. I had forgotten how serious the blows had been until I read it.

Regarding the first injury, I wrote…

I was dizzy. I was nauseous. I felt pressure in my ears, eyes, and nose.

The pain mostly subsided by the next day, leaving only temporary spells of aches, pressure, and dizziness for the next four days, so I decided that I must be okay.

And on the second,

I nearly died right there, as Noah watched my dramatic entrance with great excitement.

I stumbled to his bed as the dizziness, pressure, and nausea returned in harmony.  After a few minutes, I managed to get him out of the bed, get us both downstairs, and plant myself on the couch until Chris found me and nursed me back to Mostly Dead.

All of Saturday night I worried that I was going to die. Or perhaps fall into a twelve-year coma during the night. I toyed with going to the emergency room, but ER visits never seem to do any good in our family. So I just crossed my fingers and hoped [not] to die.

Although I’d written the blog post in an amused voice, the descriptions had been accurate.

I began to research the connection between Dysautonomia and concussions. I was surprised to find out that not only were they connected, but that the Mayo Clinic was actually using autonomic reflex tests to diagnose concussions, because they were witnessing autonomic dysfunction in all of their concussion patients.

But the autonomic dysfunction usually only appeared during time that the concussion was healing – so that didn’t explain why my symptoms didn’t start (or weren’t noticeable) until four months after my supposed concussion, and why they persisted.

So I kept researching and read several articles about Physiologic Post Concussion Disorder. One article in particular resonated with me, as the description of my head pressure was better than I could conjure up myself:

Ray said he was feeling like someone had just tightened a rubber band around his head.

Yes. That was exactly how I felt. And because it was pressure and not pain, Ibuprofen and Tylenol hadn’t helped at all.

I discussed this with a few of my doctors and they all agreed that my head injuries were a very likely cause of all of my problems. Eventually, I made it into a neurologist’s office, who sent me to get a brain MRI to make sure that nothing was still injured and/or causing problems.

Thankfully, the MRI came back clear, indicating that nothing further was wrong. He said the head sensitivity was likely nerve damage on my scalp. Everyone agrees that my symptoms and Dysautonomia likely originated from the concussion, but that nothing can be done to promote healing. And it may or may not clear up on its own.

My neurologist’s medical advice was, “Gosh. I hope it gets better soon.”

So that’s where I am. Of course it’s frustrating, but in a way, I feel like I can rest now and just learn to live day-to-day. I’ve lost count of my doctor’s appointments over the past five months, during which I feel I have explored every possible option. I’ve had my diagnosis of Dysautonomia confirmed by two different tests, and have had four doctors tell me (some nicer than others) that there’s nothing else to be done except to learn to deal with it.

So deal I will.

Leave your comment below!

Comments

  1. Great detective work!! I hope your symptoms clear up on their own, and fast!

  2. Great job figuring things out! I wonder what doctors did before people had the internet and could figure out half the problem on their own!
    I was diagnosed with fibromyalgia early this year and for me, even knowing that it’s something that I have to “deal with,” I felt much better just knowing that there really was something real going on, and I wasn’t just losing my mind! Hope that is a help for you also.

    P.S. One of my symptoms is also the head pressure thing and that rubber band description nails it!

    • I agree – it’s so hard to explain things to doctors sometimes – I always fantasize about a temporary brain hookup that would allow someone else to feel what you’re feeling so they’d understand. But internet research will have to do.

  3. I’m glad you at least have the peace of mind of knowing what it is and that it’s not a more serious issue. I pray it heals quickly and completely.

  4. I suggest you go read this: http://www.infarrantlycreative.net/2013/11/my-daughters-health-story-part-6.html (You’ll have to back up to read parts 1-5, but she gives links). It’s not totally related to your diagnosis, but I have seen other people get great results from natural healers.

  5. And I’m sure the doctors still charged you for their “advice!” I’ve always thought it best to take responsibility of your own health. Also – write down all of this (well, I guess you just did) and keep good records.

    Hope it does go away soon.

  6. http://www.bioportfolio.com/resources/trial/84314/Pilot-Study-of-Hyperbaric-Oxygen-Therapy-HBOT-in-Chronic-Traumatic-Brain-Injury.html
    I know you don’t have a traumatic brain injury, (although it sounds pretty traumatic to me) but here is s study that’s looking for people with your kind of symptoms. It involves a hyperbaric oxygen chamber so if that MRI didn’t scare you off, you might be ok for this. I know – kind of the deep end, but at least it’s trying something.
    I’ll be praying for you too.

    • Thanks for the info! I definitely don’t think mine falls under a “traumatic brain injury”, but I’ll read up on it.

      • Susan Tobin, Ph.D. says:

        A concussion IS a traumatic brain injury!! I had six last Fall and three in the last month. I have learned a whole lot about them. I hope you are healed. I wonder how long it was before your symptoms went away? Thank you for a great blog. Warmly, Susan

  7. Oi. That stinks. Alright, I’m on it. I’ll see what sort of “snake oil” remedies I can come up with for you. Hugs!

  8. Wow – you have been on quite the journey. I’m really glad you figured it out but it stinks there is not much to help you in the meantime. Like the doctor, I hope you get better soon!!!

  9. Hi Rachel,

    Just a suggestion — you should maybe go back to the original post and stick an update on there with a link to this one. You never know who might be helped, and someone searching for “concussion” might come upon it.

  10. God does some of the most amazing things when the doctors say nothing can be done. As I type this I am praying that you will hear my heart, and I will not just sound flaky or preachy. (Is preachy a word?) when I read your post this morning I could feel faith rising in me for your situation. James, chapter 5 tells us that we are to pray for one another to be healed, and that the prayers of a righteous person are powerful and effective. I am not righteous on my own, but as a believer I am righteous through what Christ has done for me, and I intend to pray fervently for your healing. I am fully expecting the mighty, powerful, and loving God that I serve to step into your situation and change it for you.

  11. Well, I guess at least you know it’s not something worse. When I hear “concussion” I always think sports injury, car accident, etc. Scary that a couple of hard head bonks could do that much damage.

  12. I read this as very good news. It seems much better that this is attributable to an injury (and you make an excellent case for that) than something systemic. Injuries heal with time :) Hang in there. I think you’re on the road to feeling much better.

    • Yes, not ideal, but much better than it could be and as Sonya says, hopefully you’ll be healing up over the next little while. God bless!

    • Yes, the Neurologist seemed to think I would heal over time. There seems to be conflicting opinions about whether Dysautonomia can heal, but I know several people that would at least be considered “in remission”, and that’s good enough for me!

  13. Sorry to hear that, Rachel. I believe this is what my neighbor has. I’m going to link this post to her.

  14. Wow, well at least you have figured out what it is. That’s always the hardest part for me…not knowing what is happening. I will be praying that things are able to heal and that you’ll start feeling better soon. Good detective work!

  15. Amanda Sheren says:

    wow, that took some serious digging on your part to figure out and connect the dots with it all to figure out what it was that you have and exactly how you got it. I would say that you ARE Dr. House. :) I’m sorry there isn’t anything to be done for you though, wish there was! but I’m sure if there is, you will find it out.

  16. Been there, done that in regards to dysautonomia:( I am sorry. It was 14 years ago but mine came on, I think, after a virus, and then I had nearly a year of ER visits and doctors trying to figure out what the problem was. I don’t really have any answers but I, too, was hugely helped by a beta blocker, limiting caffeine and dehydration. When I found out I was pregnant the 1st time, I was told I needed to stop the beta blockers, and I’ve had no major problems since. (Though I did notice recently how my autonomic response to stressful situations is still stronger than normal and caffeine brings on a pretty strong response.) I hope you can find a place of managing it, but even more, I hope that you get some spontaneous recovery like I did. You’re always welcome to email me!

    • I’m so glad to hear that yours went away! I’ve heard a lot of people say this, but some doctors say it doesn’t go away. I’m relieved that there’s evidence to contradict that.

  17. It’s so sad to read all the things you’re going through! But I’m glad you have peace right now. Just know you have tons of blog readers praying for you. :)

  18. I hope your symptoms clear up.

    For me the nausea, headaches and sickness I’ve endured most of my life and was told to stop exaggerating (by my medical parents) was explained in a ct sinus. The doctor was surprised I’d let it get this bad. A second opinion agreed entirely that my symptoms were legit, it had gone on far too long and that it can be fixed. Yay!

    Don’t let anyone ever make light of your health. Keep pursuing an answer. And good luck.

  19. Chronic health issues are the worst!!! And it’s so frustrating when doctors run out of solutions. Have you ever considered whether your symptoms could be the result of food and toxins in the environment? I read Clean by Alejandro Junger and it’s changed my life and my health. It’s about how foods are processed in the gut and how it affects all of the body’s systems. Could be worth investigating. Wishing you all the best in 2014!

  20. Yes there is a new treatment!!! It’s called TVAM transvascular autonomic modulation. A procedure that stimulates the jugular vein to stimulate the damaged nerves of the autonomic system. I’ve been doing my research too because like you after my second impact syndrome concussions I started getting Dysautonomia a few months after. I pee a lot head pressure sometimes. But the low pressure changes in weather are the worst triggers for my dysautonomia. Having coffee, or other stimulants when I’m hungry will trigger it. Or if I skip meals, or just meals with protein. It’s an awful feeling and sometimes it’s accompanied with extreme fear a few seconds. I hope you got better since I see your post is years ago and maybe even found this TVAM treatment already. If my symptoms of dysautonomia doesn’t go away in a couple more months I too will ask the doctor to test and treat me for dysautonomia. I can’t live like this. Sometimes I’m so upset why God would let me live through the accident. But like you said learning to live day by day. Good luck my friend and God bless! Get well soon!!

    • Casey, I too am looking into TVAM.
      Dr Arata clearly stated I have Dysautonomia which I knew and is why I saw him.
      Other dr’s were useless.
      Dr Arata did say it works better on younger ppl – I’m 37 , which surprised me given the testimonials on his site from older ppl.
      Have you had it done by now?
      Either way how are you feeling overall?
      I am and have been bedridden since I can’t stand/sit much for about a yr now.
      The head pressure is ridiculous along with the other symptoms.

  21. I am so happy I came across this page. I suffered my 10th recorded concussion in January. I have always randomly passed out, causing me to hit my head at times and become concussed. This has happened for 18 years. My neurologists diagnosed me with complex migraines when I was 15. I have gotten Botox, been on countless medications and nothing has stopped it. After this latest concussion in January, I have been passing out 3-4 times/day. I have been told I have a form of Dysautonomia, but no one can help me. Headed to the Mayo Clinic in September to see if I can get my life back.

  22. Helo! a little delayrd but wondering if your symtpoms with Dysautonomia cleared?
    I am in same boat 4 months in.

  23. Wow Amy! I pray they help you! I am on concussion 5. last couple were very mild bumps.. altho also concussions.
    Over reaction by ANS

  24. Rachel, thank you for sharing your story.
    It’s hard to type as I am bedridden and hands get tired easily.
    To the point, I have Dysautonomia, symptoms are pressure in head esp. Behind nose between the eyes.
    If I get up the head pounds all over, pressure all over head gets worse, ears feel clogged from pressure on sides of head, heart races and feel faint.
    It’s more common to read of head ACHES than pressure, so reading your story and a few others on the net was in line with mine.
    Heat intolerance, fatigue, sleeplessness, dizzy, vertigo are also constants.
    Had two concussions, and then a coffee was the last straw that made me nonfunctiona.
    This is a very short version of the story.
    Did you look into TVAM with Dr Arata here in Southern California?
    See my previous post about it.
    I’m also looking to rent an RV since I must lie down to go to AZ and see Dr Patrick Nemecheck.
    He is an autonomic specialist that helps TREAT Dysautonomia not just diagnos it.
    He doesn’t use any procedure- just short term meds, supplements that you buy cheap on Amazon (he says this himself) and diet.
    I spoke with him, will speak again to see if it’s really worth the trip – Remember I can’t stand or sit long.
    Do yourself a favor , google him, set up a call for $350 be prepared to ask everything and judge for yourself.
    If I could take a plane I would have gone to him long ago.
    I did all the useless dr appt’s in ucla which has no autonomic clinic.
    I’m keep delaying Nemecheck because of the 8 he trip each way with an RV and its cost and between maybe doing TVAM.
    Let me know how you are doing – did the pressure subside, mine only got worse with time.
    From my understanding and Nemecheck confirmed the pressure is due to lack of oxygen from lack of blood flow due to autonomic dysfunction.
    All other symptoms also due to lack of blood flow.
    Hope you feel better

  25. shirley Hartridge says:

    I have a daughter who is similar. We are just investigating Dr. Patrick Nemechek who may be on the right track for some help.

  26. Daniel Bliss says:

    Those who sought treatment with Dr. Nemecheck, please let me know how you fared. We are in Baltimore, MD, and my girlfriend is suffering terrible symptoms of dysautonomia and post-concussion syndrome and I don’t know if she could even survive a trip to AZ, but we are desperate for help. Thank you.

Speak Your Mind

*