I’m noticing a lot of topics asking if X, Y, and Z are also symptoms of EM. Thought I’d throw my hat in the ring. Does anyone else have days of dizziness? If I move my head too quickly or stand up too fast, my heart skips and I get a quick flash of dizziness. I’ve seen a few others saying they have had fainting issues.
Is this all just tried to EM’s bad circulation?
That sounds like POTS and EM is pretty common for POTS patients I believe. A tilt table test would give a definitive diagnosis for POTS I think, not entirely sure though. Mayo Clinic tested me for this last week.
yup I have that- lots of fun
I’ve had POTS-type symptoms and mild Raynauds for 50 years, and severe EM for 5 years (prior to that it was mild for about 15 years).
Lyrica has definitely worsened the POTS symptoms. I am gradually lowering the dose/day of Lyrica and this has helped. (It’s also reduced swelling during flares. A small dose of Cymbalta seems to help with the swelling caused by the Lyrica.)
When I’ve had very severe flares, my upper body felt very cold and I also felt dizzy. One time, I experienced a severe flare while I was lying down having an ultrasound to check blood vessels/flow in both legs and feet. The senior technician said she had never seen anything like it. I told her I felt dizzy and she replied that there was so much blood flow in my lower extremities that she wondered how I could function without fainting when standing. I am not sure whether there is a relationship between POTS and EM, but having an overly reactive vascular system might be a common link.
Read carefully, on so many websites, the side effects of the drugs you’re taking. For instance, one of my meds lowers my BP so low that I feel faint. Another screws around with my heart so much that I ended up with a cardiologist. Try not to worry. Eating something salty or drinking salt water brings up my BP so the dizziness and light headed ness decreases. EM is such a weird disease. Good luck, Patricia
I know there’s a relationship between POTS or POTS-like symptoms (“neuropathic POTS”) and small fiber neuropathy, maybe that’s something to look into (I don’t have POTS, so don’t know much).
I also agree about medications. Unfortunately most medications I have tried for EM have made me dizzy (esp. in the beginning … and esp. combining anti-seizures).
Sometimes neurologists recommend salt pills or midodrine for dizziness symptom control … although both of these exacerbate my burning, so be careful. There are also some exercises you can do to try to build up tolerance to orthostatic stress I think … google will know more
I’m sorry I join EM. ORG then disappeared. My husband just passed away three weeks ago and my focus was needed with him. Before I forget (hardly slept in weeks, I’m the one fighting cancer for the second time and he’s gone?!) regarding dizziness I highly recommend you run all your medications, even supplements through a website like Drugs.com.
You will be able to see side effects of each medication but also the risks of combining certain types of medications with certain diseases. This is by no means to replace your discussions with your doctors. But I have been researching medicine since I was a teenager. One thing that I have learned is that the more informed you are about your health, the better you can communicate with your doctors. This usually means improved health care treatment.
My EM is secondary, toxically induced by excessive use of 5-FU chemotherapy on stage 1 Squamish cell cancer which was removed surgically and successfully. I also forbid the Radiologist from using 5-FU because it lead to complications that killed my mom when I was young. Thus the studying medicine so young. I’m dealing with him.
For the burning please look into sodium channel blockers, specifically: www.ncbi.nlm.nih.gov/sites/books/NBK1163/#etha...wait, my hands are so severe I wear gloves 24/7. Let’s try this another way.
Once of your best resources is the government archives which does take a little practice getting used to, but it’s worth it! The article I’d like many of you to read is SCN9A-Related Inherited Erythromelalgia - GeneReviews under the site I posted above. This is an excellent article with a thorough analysis and explanation of EM as well as the most up to date treatment plans.
With my husband recently passed my specialists have asked me to urgently relocate to Los Angeles to be treated at Cedar Sinai and UCLA. I will be back and forth to the site, I’m very sorry for the delay. I literally have 8 large notebooks (I like hard copies on hand when I’m researching) with extensive data on the symptoms and conditions you are dealing with. I wanted to post a summary two months ago, but my husband had to come first.
I will request special permission from the EM site administrator to post a summary of what has kept me going when my doctors keep telling me that my chances are slim. Knowledge is power, it gives you choices, I would like to share as much as I can for as long as I can.
I’ll be in touch soon. I move by mid January so I’m crazy busy. I think about you all daily. I hope you have a wonderful Thanksgiving day with your family and loved ones.
so sorry to hear about your husband.
Thank you. He is the second husband I’ve lost to illnesses. It is especially hard when it’s around the holidays. Everyone offers to help but then goes back to their own busy lives and responsibilities. It’s just hard right now.
I’m so sorry for your loss. You are going through so much and I just want to let you know that I truly feel for you. You are trying to grieve, prepare to move and in much unbearable pain. Bless you and your strength must be more than you ever thought imaginable. Amongst everything you have taken time to reach out to try to help everyone here. Truly you are amazing. I hope you reach out to those around you who offered to help and let them know how they can help. Take care of yourself the best you can and allow yourself the time you need to process everything.
Thank you for your support and kind words. I wish I did have someone around to help me. Right now ois Judy me and my two cats Smokey and Bandit. They’re not very good at packing though, they chew on the boxes,!
I found some resources, links with reduced fees so hopefully I can give a few people some jobs this winter