Beta Blockers on FND

[alex232]

I have been diognosed with FND for quite awhile and see Dr Edwards at St George's. I also have a hypo thyroid. My latest thyroid test wasn’t right and the doctor said I should take these palpitation tablets until I see a specialist, they are called Propranolol and are Beta Blockers. Well, since on them there has been a real change to my FND. I am waking up in the morning without a twisted neck and no non-seizures since using them. There is some tension still but in my books that is some kind of miracle to me. Does anyone else have some idea what maybe going on, have got to the root of my problem, and it’s all connected to adrenaline.

[Momofson]

Did you mean to say that you have hyperthyroid? Usually beta blockers are given more for hyper...not hypo. Also, hyperthyroidism is what usually causes heart palpitations.

You said you have been diagnosed with FND,

many people have been misdiagnosed with FND. My son has been misdiagnosed with FND, and has a hypothyroid condition, with many nodules, goiter and possible cancer. He will be having his thyroid taken out in a couple weeks. Hopefully that will correct all his symptoms. A malfunctioning thyroid can give you all kinds of problem throughout your body because the thyroid runs almost everything and can make you feel horrible, so don’t take a FND diagnosis as the final word, especially when you have real problems.

When doctors can’t find out what’s wrong with you, many times Say you have FND or some other meaningless diagnosis.

Have you had all your thyroid panel hormones checked? Have you had test for antibodies against your thyroid? Have you had bloodwork to check for all the antibodies that could happen in autoimmune encephalitis? If you have gotten relief from most of your symptoms with medicine that corrects your thyroid malfunction, then it’s not FND that you have. It is probably a thyroid problem that your doctor didn’t check in the first place! Even if you had thyroid tests that came back “normal.” Many doctors and labs don’t go by the newer guidelines because they don’t even know they were changed about 10 years ago. For example, no one should have a TSH above 3, preferably it should not be above 2.5. I’m not sure what the low end is but that was changed too. You need to find a doctor, preferably an endocrinologist, that really knows how to diagnose and doesn’t just slap a meaningless label on you.

[alex232 in reply to Momofson]

Thank you for your reply. I am not hyper, just over medicated so that’s why my TSH is low apparently. Because of the powerful effects of Betablockers I do feel I have been misdiagnosed, but early days yet. I really try to get the blood tests that you suggested, thank you very much.

[Hidden in reply to alex232]

I’m Hypothyroid too but I got palpitations and other neuro symptoms when undermedicated. Once the endo increased my dose of Levothyroxine my palpitations stopped. The truth is we are all unique!

I also developed tremors and twitches and an ataxic which the neurologist diagnosed as FND. I was given Propranolol for this but it had no effect at all on me. What has seemed to help eliminate the tremors is an epilepsy drug I’m taking for Trigeminal Neuragia. Weirdly the facial pain is only helped a little but the tremors stopped immediately.

And furthermore I’ve discovered that my ataxic gait is due to having numbness in my feet from small fibre neuropathy of another autoimmune disease, Sjögren’s and also to hypermobile knees. And my arms are also hypermobile which accounts I believe for the so called functional weakness in both arms too.

As Galileo Galilei said “All truths are easy to understand once they are discovered; the point is to discover them.”

[Momofson in reply to Hidden]

I have always heard that hyperthyroid causes heart palpitations, not hypo. I’ve had hypo for 50 years and the only time I've had heart palpitations was when I was over medicated on my thyroid meds, because that slows everything down.

I also never had any neurological problems on thyroid.

A lot of the symptoms you describe sound like they could be autoimmune encephalitis problems, but I’m sure your doctor must have done all the bloodwork for thyroid antibodies and antibodies for AE before he diagnosed FND. FND is what is usually diagnosed when they don’t find anything else.

[Hidden in reply to Momofson]

Are you replying to me or to Alex232? If me then I have an autoimmune disease called Sjögren’s which can often cause symptoms very like MS. My Hypothyroidism is secondary to Sjögren’s because the rheumatic disease destroys the thyroid in about 20-30% of sufferers. I also have significant degenerative disc disease throughout and am very hypermobile in joints and all connective tissue.

No one on my medical team, apart from the neurologist, believes my symptoms are remotely functional.

[Momofson in reply to Hidden]

I was taking to you. My first paragraph was a bit confusing. I was meaning to say that hypothyroidism slows everything down so I don’t think you would have fast heartbeat unless you were taking too much thyroid medicine. My doctor thought I had Sjögrens too but did blood test and I didn’t have it. My eyes were so dry and had other symptoms. I use MSM drops now (make sure it’s the kind for eyes) and it has helped me so much! It’s the same ingredient that is in Bright Eyes eyedrops. I get it from Amazon.

Did your Neurologist do the blood panel sent to Mayo to see if you had encephalitis? Did he check your thyroid antibodies?

[Hidden in reply to Momofson]

Okay well I do think it’s actually more complicated than over or under medicated because some of us don’t convert T4 into T3 well so I get sick if undermedicated or overnrdicated but I’m nowhere near Graves either way. I do get tremors or palpitations if over medicated but I’ve adapted the time I take my Levo and am on a nerve gating drug for Trigeminal Neuralgia which inhibits the absorption of Levothyroxine. So it’s all balancing itself out okay in the thyroid dept for me I feel.

But your doc saying that you can’t have Sjögren’s if your bloods are negative makes me despair!! 25-30% of people with Sjögren’s are seronegative ie bloods negative but still have it. The diagnostic criteria is either blood positive or lip biopsy positive. The lip biopsy is the only absolutely definitive way of diagnosing Sjögren’s!

And more exasperatingly still, since this is FND “Hope” - the lip biopsy positive seronegative type of Sjögren’s presents in 50% of sufferers very much like MS or so called FND. So many of those with seronegative Sjögren’s present first to neurologists - who assume it’s all functional and then these poor souls never get referred to a Sjögren’s expert so never know that actually they probably have ganglionopathy and small fibre neuropathy and systemic fatigue - all triggered by Sjögren’s or closely related rheumatic diseases. Sorry to get on my soap box but it just makes me so mad that you were told that you didn’t have Sjögren’s because it’s always blood positive!! Look up neurological manifestations of Sjögren’s and seronegative Sjögren’s for confirmation of what I’m explaining!

[Momofson in reply to Hidden]

The only symptom I have of Sjögren is the dry eyes, and since I have hypothyroidism, she wanted to check that. Since I found the MSM liquid for eyes, I haven’t had the dry eyes. The lip test is interesting, I have never heard of that.

[Hidden in reply to Momofson]

hopkinssjogrens.org/disease...

I wasn’t actually thinking you might have Sjögren’s but I just wanted for people here to have the right information and suggesting that Sjögren’s can only be diagnosed by blood is incorrect.

[Momofson in reply to Hidden]

Thank you for the information. My doctor never mentioned that!

[thinkin]

Hi,

Propranolol treats migraines too. FND does work hand in hand with migraine and sometime the lines between are blurred. Maybe you've had some form of migraine driving your symptoms for FND. I had a friend who used to get migraines followed by NEAD so it makes sense.

I have migraine as well as my FND and when one gets worse, so does the other. I take vitamins for mine. The P5P (bioactive vitamin B6) with magnesium and vitamin B2 fixes both. I'm doing so well. I've put myself on a low glutamate diet (free glutamate uses up your B6 to break it down) to preserve the B6 I am absorbing. Unfortunately I can't have propranolol it makes me loopy.

Maybe ask your doctor about the possibility that you have migraine. I know my problems are down to poor absorption of vitamins. It runs in the family and goes with my hypothyroidism too.

It does not mean you did not have FND, it's just that migraine is driving it. I hope you continue to do well. xxx

[alex232 in reply to thinkin]

Thank you thinking, I see. It’s good you are doing it the natural way and doing good too. I understand what you say about migrain and I guess the thumping comes from the heart and adrenaline so I guess it’s less intense from the use of Beta Blickers. Now I feel as if my volume button been up too high too long and now I feel so relieved. In the past paspalpitations have occured all over my body too and I thought that was the FND causing severe tremors. But from my knowledge of FND it suggests the brain and body is okay and we do not need expensive tests , it’s just the processes are malfunctioning which is closely related to our attention and when it is explained, you feel bemused as you go to doctor for help. It does give us hope because if you worry less that’s a good thing and the Botox helped a little bit too.

But as you say where are the symptoms coming from not just the FND, the cause.

I am still exploring the causes and the advice I have been given so far in this link has really helped. Thinkin, has think I’ll try P5P too sounds very positive.

[thinkin in reply to alex232]

Hi,

There is evidence that there are actual changes in parts of the brain on scans in FND. Loss of volume in some areas from what I've read. It doesn't mean that recovery is not possible, though, but it can indicate that some are worse than others. Sounds like you're on your way to recovery already.

Just be careful with P5P if you have been taking ordinary B6 it will make your body use it up all of a sudden. It can give you a bit of a rush. It helps you absorb B6 from your diet too. You'll probably find that there are foods that work well with P5P. I find bananas which are slightly under ripe give me a nice pick me up. If you over do P5P then you can feel nauseous, vomit or feel drowsy. I also make sure I don't eat a banana with the P5P as it's too much. You will get used to it. I made the mistake of starting high so this is just my experience. Also if you have other health conditions and medications check first.

There's lots of different migraine websites out there. Lots of advice on glutamates. Just don't do too much too soon. There's advice on the FND website too.

Good luck and remember more is not always better. xx

[Di01]

Im so frustrated with my condition ive been told i have fnd but i feel there more to as my brain totally feel odd all time ive started picking my skin my nervous system feels shocked my legs dont work my brains tells me that im going to fall it also says i can do anything feel like my body is frozen i cant lift my arms i get pain everytime i go on a anti depressants i seem to get really bad side effects and thats on low doses at my wits end just cant seem to control anything fnd is not what i think this is i dont get anything dorted i go around in a vicous circle

[alex232]

Sorry to hear this, it founds really awful what you are going through. I still struggle a great deal, but anything you can do to feel safe is important. Otherwise you are in a state of stress all the time. Breathing exercises, physical activity, developing posture, diet and nature and many mores. But still try to get help with condition but don’t let everything else suffer . Befriending the nervous system is a very good book about the vagus nerve that has helped me a lot. I still have severe spasms where are lose control of my body but emotionally mentally much less at sea