bkweavers Posted December 18, 2017 Report Share Posted December 18, 2017 I'll try to make this as short as possible. I've been a member of Dinet for many years because of my daughter having POTS. Thankfully, she's doing beautifully but me on the other hand, not so much. I've been diagnosed with CFS, hypothyroidism, RLS, and migraines. I also suffer from neck and back pain. The migraines and RLS started in my early 30s. Last year, I was experiencing frequent tachycardia, more fatigue, and a feeling like an anxiety attack with heat intolerance and lightheaded.ness. After testing, the cardiologist diagnosed me with Inappropriate sinus tachycardia. She said she couldn't quite make a diagnosis of mitral valve prolapse as I didn't quite meet criteria but she wants me to come back this coming year for another echocardiogram. She put me on metopropolol which has helped for the most part. For awhile, my chronic migraines were improving. I was actually going for a week or longer without one. At the end of September, things changed. I started to get more migraines and more neck pain especially in the occipital area. The pain starts in my neck, sometimes in my shoulder and many times, works it's way into a full blown migraine. I now have gone maybe a day here and there without a headache. Most of the time, I wake up with a very stiff neck and a headache. I've tried many different pillows, went back to the chiropractor, and tried dry needling. I've been having to take sumatriptan to get rid of most of these headaches which in turn, makes me so exhausted and brings on other symptoms like nausea and lightheadedness. I'm beginning to get very down about this. Even working only 20 hours a week is hard. I seem to also have more brain fog. Yesterday, I called my primary to get a referral for a neurologist. (I live an hour north of Milwaukee.) I really wanted to go to see Dr. Dotson at Aurora Grafton but I was told she's booking out until September. (Doesn't surprise me as I went down this road with my daughter.) My question is this: do you think I'm headed in the right direction seeing a neurologist? I wish I could see Dr. Dotson as she is a dysautonomia specialist. The neurologist I'm looking at does have experience with neck issues. Also, do any of my symptoms sound like Ehler's or Chiari? I don't know if the neck/back pain is from the migraines or the other way around? Both seem to feed off of the other. Any thoughts or advice are welcome. I'm really glad I can reach out to all of you. I feel very alone in all of this. I have a wonderful husband but he's super healthy and has no idea what it's like to deal with pain and fatigue day and after day. Brenda Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted December 18, 2017 Report Share Posted December 18, 2017 Do you have a GP that will write a script for a standing MRI with flexion? This will show both Chiari and craniocervical instability/brainstem compression from EDS. Then when you see the neuro, you will have more info to take to them. Or, if you get in quick enough, just wait so you can get all the tests done together. I recommend the standing MRI because it shows stuff a regular MRI doesn't. Hopefully, your new neurologist agrees. My regular MRI shows no problems. My standing MRI shows brainstem compression. My headaches are bad and I haven't found meds that work, but they aren't as frequent as yours. I hope you find relief and answers. Quote Link to comment Share on other sites More sharing options...
TCP Posted December 19, 2017 Report Share Posted December 19, 2017 As above reply. That's what I thought. Check out Dr Diana Driscoll as she has fully researched this area. Quote Link to comment Share on other sites More sharing options...
bkweavers Posted December 28, 2017 Author Report Share Posted December 28, 2017 Thank you for the information ladies! I have an appointment with a neurologist but not until April 2nd. Quote Link to comment Share on other sites More sharing options...
Missy M Posted December 31, 2017 Report Share Posted December 31, 2017 I’m not at all saying that seeing a neurologist may not be helpful. It may prove VERY helpful! I’m only adding that, in my case, it was an electrophysiology cardiologist who was the specialist that ID’d my issues as dysautonomia and confirmed his diagnosis with appropriate medical tests. So electrophysiology cardiologists (a type of specialty cardiologist) can also be helpful. They earn extra certifications in how the nervous system impacts the cardiovascular system. Most electrophysiology cardiologists will list this specialty in their listing on their clinic websites since they have to go to so much extra trouble to earn that certification. Quote Link to comment Share on other sites More sharing options...
angelloz Posted December 31, 2017 Report Share Posted December 31, 2017 Hello, So sorry you are dealing with the horrible headaches. Even with autonomic dysfunction, which at times is quite scary, my migraines are my worst quality of life issue. My migraines also started in my early 30's and progressed to nearly constant neck and shoulder pain which sometimes becomes severe, ER , migraines. Like you I wonder, chicken or the egg. I can really relate to your questions. I am considering seeing an orthopedic doctor to rule out or in a shoulder issue. X-rays show no issues. I am going to bring up a standing MRI with my new neuro in January. I will let you know if I figure anything out. Please update us if you can shed light on this issue. All the best! Quote Link to comment Share on other sites More sharing options...
TCP Posted January 1, 2018 Report Share Posted January 1, 2018 17 hours ago, Missy M said: I’m not at all saying that seeing a neurologist may not be helpful. It may prove VERY helpful! I’m only adding that, in my case, it was an electrophysiology cardiologist who was the specialist that ID’d my issues as dysautonomia and confirmed his diagnosis with appropriate medical tests. So electrophysiology cardiologists (a type of specialty cardiologist) can also be helpful. They earn extra certifications in how the nervous system impacts the cardiovascular system. Most electrophysiology cardiologists will list this specialty in their listing on their clinic websites since they have to go to so much extra trouble to earn that certification. I totally agree, as neurologists were pretty useless in my diagnoses. They either saw the problem as not in their field of expertise, i.e. cardiology or wanted to send me to the pain clinic. Quote Link to comment Share on other sites More sharing options...
AnnHasPots Posted January 2, 2018 Report Share Posted January 2, 2018 I used to have horrible headaches whenever I was upright or moved my head. It turned out I was having arteries spasm in my brain reducing my blood flow, which caused my brain to send the signal to my heart to make it beat faster (POTS). Blood flow issues can be diagnosed with a transcranial doppler. It's something to rule out. Maybe do a headache journal. Figure out what triggers them. Food? Exercise? Emotions? Being upright? Moving your head? Touching your neck? Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.