Dysautonomia & Migraines

(Image from WeHeartIt)

Postural orthostatic tachycardia (POTS – a condition of dysautonomia) and migraines are the most recent additions to my health condition collection.

After numerous months of dealing with almost constant nausea, light headed, dizziness, feeling faint, tingling at the tip of my tongue, dissociation, light sensitivity, pressure in the front of my head as well as down the sides of my nose, and seeing "stars" it all boiled down to my blood pressure taking a nose dive when I’m standing and migraines triggered by light (indoors and outdoors).

My doc has put me on a very low dosage of Amytriptalin to try and control the migraines. The only symptoms I have is the pressure in my forehead and down the sides of my nose, stars, and hyper sensitivity to light. I was taking Amytriptalin a couple of years ago, at a higher dosage, to treat insomnia. She also wants me to get myself used to wearing my sunglasses everywhere I go, including shopping malls and bright stores. I have been really good about wearing them outdoors, but I have to admit, I feel a bit silly wearing them indoors, in public places :s Doesn’t that look a little shady (No pun intended)? What if someone thinks I’m on a mission to shop lift? Lol

Based on what my doctor said, there isn’t a medication she can prescribe to relieve my symptoms of POTS. The only advice I was given for POTS, is to add salt to my food, and to start tracking my "spells". Basically, I’m to time how long I’m standing before my blood pressure takes a nose dive, and then go lie down. Once I recover from that spell, I get back up and do it again. Repeat as directed, and as often as needed. Obviously, when I’m away from my house (which doesn’t happen often), lying down isn’t an option, so sitting down would be the proper action to take. Since there isn’t always a place to sit available, my doc recommends I bring my own. She was referring to those walkers on wheels with a seat. Call me stubborn, but that is NOT going to happen! I’m only 34…I’m not giving into this yet! I know I’m just letting my pride get in the way, however I’m still working on accepted the fact that sometimes I need to use my cane for stability, due to problems with my hips and knees. This is about where I draw the line. Up until my doctor confirmed this diagnosis of POTS on Monday, I have been pushing through these spells when I’m away from the house and absolutely have to get something important done. None the less, the fear of passing out is always at the front of my mind. At home, I give into it, more times than not. My doctor’s opinion is that if I push through these spells, I may run the risk of passing out. She doesn’t feel I’m strong enough to be venturing into a mall, even if it’s a quick trip to a specific store. She prefers that I ask someone to run an errand for me. If it is absolutely something I need to do myself, then she wants me to have someone accompany me whenever I go.

Fortunately, I only have this problem when standing and the symptoms are diminished when sitting. You can say I’ve already "trained" myself to be on the lookout for a soft place to sit, on the rare occasions that we go somewhere for a long period of time. With the fibro, I can only stand for so long, and then I need to sit, however it has to be on something soft or all my muscles work themselves into a very tight mess, very rapidly. Hard surfaces also trigger my pelvis, back and neck, so soft seating is the only way to go 😉

Needless to say, I’m a bit overwhelmed and frustrated, trying to manage these additional conditions (the POTS more than the migraines) the way it has been advised.

The best way for me to make these adjustments, is to get back to basics, and build from there. I also need to find some energy to read more about POTS and find some seasoned potsies who can teach me a thing or two 😉 At the very least, meeting other who deal with this condition on a daily basis, will give me a sense of security that I am not alone 😉 So much like the comfort we get from each other with FM and CFS.

Being that dysautonomia is yet another symptom (a less common one) of FM, maybe we have members of the Chronic Connection family that are dealing with this too… If so, I would LOVE to hear from you! Please leave me a comment, or feel free to email me privately at chronicconnection@gmail.com

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6 Responses to Dysautonomia & Migraines

  1. wonky_diva says:

    The best resource I’ve found is The Dysautonomia Connection http://thedysautonomiaconnection.org/
    The site, the message boards, and the associated YouTube channels are all great.
    There’s a bunch more online but this is a good place to start.

  2. Anonymous says:

    Dysuaonomia Prison
    I am building a web site about dysautonomia called Dysautonomia Prison and a Facebook. Both are in the building process but I believe you could find usual information there.
    To the left on Facebook and at the top of the blog you will see what I have been diagnosed with.
    Regards, Jane

    • Nancy says:

      Re: Dysuaonomia Prison
      Thank you so much for sharing this information with me! I will be sure to check it when I am more awake tomorrow 😉

  3. Anonymous says:

    I’m so sorry you have these new conditions. I think I too have them although trying to get diagnosed at the VA is so difficult I have given up even trying. I thought I would help you out with some quick research so you can save your energy.
    1. http://www.nymc.edu/fhp/centers/syncope/pots.htm
    2. http://qjmed.oxfordjournals.org/cgi/content/short/101/12/961
    Hope that helps!
    BTW, if it were me, I would use the chair thing on wheels. I have often wished I had one of those. Especially if it means I can get out on a simi-good day or if I am going somewhere I might not be able to sit down for awhile.
    Sending you lots of hugs!

    • Nancy says:

      Thank you so much for your help! You are an absolute sweetheart, and so thoughtful! The way I’m feeling right now, is much the same as when I was first diagnosed with FM & CFS. That feeling of being overwhelmed, and wondering how you’re going to keep getting through each day with these health issues that reduce quality of life. I can’t help but feel really angry and frustrated right now. I know that this is yet another process, just like it was/is with the FM & CFS, it’s just really fresh and overwhelming right now 😉
      I’m sorry to hear that you are having so much trouble getting diagnosed with VA 😦 I know very little about VA, other than what others have told me about their own challenges. I hope that things with fall into place for you, so that you can get the information you need!
      Sending positive thoughts and a ton of hugs your way!
      ~ Nancy

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