I have been feeling extra weak with slurring speech and feeling so run down. I thought I was doing better. Then I remembered the last time I felt this way I had wrote it down in my calendar. I also checked what I was doing around that time and now that might offer explanation, and there it was...I was on my menstrual cycle. Am I feeling so bad because my brain has to work harder to deal with this extra function or is hormones the true culprit here? Men don’t have periods, but they have hormones too, is ours out of balance or something? I had checked my female hormones and they are normal but maybe there is a specific brain hormone that’s not working right and if so which hormone is it and can we test for it. Are these so called medical specialists even considering this?? After all, the definition of hormones is that they are chemical substances that affect the activity of the body in other words they are the messengers that control and coordinate activities throughout the body. Isn’t FND where the messages are wrong, so is it a hormone problem? Why are there no doctors in this forum to help with these questions?
FND and your hormones role? Docs? - Functional Neurol...
FND and your hormones role? Docs?
I’ve read papers suggesting abnormal connections are created from the amygdala and motor sensory system in the brain. Brain also controls, to some extent, a lot of hormones (others in like other organs, but refer back to the brain). Since this condition does not send signals correctly I’m assuming that even that’s why hormones somehow affect more so during the menstrual cycle. As for me I get really affected during mine and often wonder how I would been had I not been having a period. There surely is some kind of mechanism that elevates the condition during that time. Some other diseases etc., get worse during menstruation or even pregnancy so I can see how it can affect it; however, like you, I wish they would check that out as well. It’s frustrating. I wish this condition was looked into way more. So at least there’s some kind of understanding on how to approach or see the problem.
If the doctors would read our comments perhaps they would learn something or at least find a new direction to explore, especially after reading your intelligent response. Since there is no test to explain FND, the only useful research would be our testimonials. They should read our comments and watch our YouTube videos. NOTE TO DOCTORS our symptoms worsen during our periods. Now go from there. Are any docs listening? We are suffering and need a cure.
I’ve recently been to an endocrinologist. Interestingly I did this because my previous diagnosis was Central Centralisation Syndrome, and there are some specialists in this area who have hormone hypotheses around pain management, and some people diagnosed with CSS who strongly subscribe to this doctor and his work. My hormone levels (those regularly assessed) all appeared normal, so I was recommended not to pursue this line further.
Do not accept a diagnosis of FND without having everything else checked out completely. Way too many people are being diagnosed with that because their doctor is not familiar with other things that could be causing the symptoms!
If you notice that it happens during your period but your doctor doesn’t check into that, you should FIND a different doctor!
Many times your thyroid can be causing your problems at these times. Although it could be many other things, like a teratoma cyst on your ovaries (or testes if your a guy) Has your thyroid had a complete checkup with not only a complete thyroid blood panel but also to check the blood for antibodies against your thyroid? The antibodies against thyroid are TPO and TG. Hashimotos can be a real problem or it can have something to do with SREAT. Even if your doctor says you check out fine, do your own homework on this subject after you get the labs back. Do you have other symptoms of thyroid like strange periods, cold intolerance, thin nails or hair, losing hair, thinning eyebrows or losing hair on outer 3rd of eyebrows? Dry eyes or mouth? Which can also be a sign of other immune diseases. Many other signs.
Do not accept that everything is in your tests are in range without checking out the labs yourself. ALWAYS get a copy of your lab work. Most labs and doctors will let your thyroid TSH go to 5...it should never really go over 3, especially with any symptoms and around 2 to 2.5 is really better! Go to the website “Stop the Thyroid Madness” lots of very good info on there.
Also have you had the blood panel on autoimmune encephalitis? Any doctor can order it from a lab but it must be sent to Mayo for the test. It checks about 27 different antibodies that could be causing your problems. Some are connected to specific cancers.
Read read read all about your symptoms on only the very best medical websites. Read about the newest studies. Do not let them label you with something you probably do not have! Get a family member or very good friend to help be your advocate! This is a very hard road to travel on your own when you are sick because so many doctors don’t know and are just going to put the FND diagnosis on you or the depression diagnosis. To get better answers, do not be afraid to switch doctors and don’t stop til somebody listens to you. There are many websites and Facebook pages to help direct you and tell you good doctors in your area. Good luck!
I do have an ectopic thyroid which causes low thyroid but I have been treated with synthroid for years and my TSH T4 T3 and TPO are normal. I have been assured by the endocrinologist that my symptoms aren’t due to my thyroid since my labs are normal and I’m taking the medication. I also asked him to check my female hormones, they came back normal as well, I’m thinking about checking my cortisol and what other hormones does the endocrinologist check? I have been checked for autoimmune diseases and Lyme disease and it came back normal, so has my B12 magnesium. This is why doctors don’t want to try hard to help us cause nothing shows up on tests.
Hello, I know this is an old post however I am just wondering how you are? Did you find out anything in relation to your hormones? My FND symptoms flare up right before I am due for period. Afterwards they completely settle again. This has happened for the past 3 cycles. I am also peri menopausal. Trying desperately to find answers!
My estrogen and progesterone was normal but my symptoms are very bad during my period. I had a bad time of it this month. What symptoms do u get?
So sorry to hear that you are still suffering. About a week before period I start to get unwell. Numbness down one side, migraines, blurred vision, severe thirst (I don’t have diabetes) shaking, lightheaded, feeling like passing out, nausea, and one or two non epileptic seizures that last a good hour each. I am pretty much in bed for most of that week. I get the occasional hot flush. Once period starts I am ok.
Did your doctor check hormone levels at different times of your cycle as they fluctuate? My gyno said that it’s very hard to get levels as they can change every hour especially during peri menopause. He is going ahead based on my symptoms and his experience. Have you considered trying progesterone? What are your symptoms?
My therapist wanted me to try birth control but I’m hesitant to mess with my hormones in case I get worse. I already can’t handle most medications because I get palpitations and wooziness. I also get the symptoms u described except the seizures but I still feel bad into the 4th day of period, My walking also gets uncoordinated
Oh I totally understand feeling hesitant about taking anything. It really worries me too. I am going to try the progesterone though as if it works I may not get flare ups and can then possibly get better. For me it’s worth the risk.....
I hope it helps you and let us know how it goes. It is worth the risk and know that you are brave for trying 😄 I spotted yesterday and then I saw it was around ovulation time. I haven’t spotted mid cycle since I was in my 20s when I worked out at the gym. I was more active in my walking this month before my period I am finding out that it’s more physical activity that triggers me along with my menstrual cycle. Not emotions. My psychiatrist asked me what emotions am I feeling that led to my current relapse and I said I was fine happy even that I was finally able to walk a few blocks again but when the week before my period came and my daily walking I had an episode and still not back to where I was. He was still trying to get me to admit that I was going through some emotional turmoil because since my medical exams came back normal it has to be emotional. He’s treating me as if I have conversion disorder and I don’t and he sees I’m not in emotional distress won’t prescribe anything (fine with me) and doesn’t want to see me anymore unless my therapist recommends it. Just because the doctors dont see what’s wrong doesn’t mean there isn’t something physical going on.
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