Spasmodic dysphonia

[Beautifulrainbow]

Does anybody suffer from spasmodic dysphonia, I've had it now for over five years and Im not any closer in finding a cure, I had Botox injections into my vocal chords and also a radiesse inplant but still my voice is no better, has anybody had something else done and it's worked.

[rubyred]

Hi I have muscle tension dysphonia which my Speach and language therapist was quite clear that if was thyroid related the endo wrote and told her it wasn't. I know it's not the same as spasmodic but have found that since stoping thyroxin and going onto just T3 has helped. It may be you need to look at your medication. I am aware that my Speach and language therapist has other patients the same as me after RAI. I saw several ENT and endo's they all stated not thyroid related but seems my Speach and language was correct. Know we don't that've the same type of dysphonia but I do think it'd worth looking at your medication.

[hjane]

I have regular periods of loss of speech , which starts with intermittent word loss followed by slurring of speech then total loss of speech . This can last for several hours to several days. My Dr , Neurologist and endo haven't a clue as to why it happens , initially they thought I was having mini strokes , then atypical migraine , I just have to wait until my speech returns . I have often thought it was due to my thyroid but told it wasn't .

[Megan4 in reply to hjane]

You MUST check your birth control, "if you're on any". This is probably caused by estrogen birth control. It happened to my sister. I can also only take progesterone only BC

[Linz1 in reply to Megan4]

Hi did your sisters voice recover? The very same thing has happened to me!!!!

[shaws Administrator]

I am sorry Mazda you have problems with your voice and it must be very difficult. I had never heard of this before. I have a croaky voice now with hypothyroidism but I think it's because it took a long time to be diagnosed.

I don't know if you have this link which may be helpful to you.

dysphonia.org/

[Beautifulrainbow in reply to shaws]

Thank you for replying, I didn't have that link but have read it and found it very useful. I have suffered with this condition since 2009 and find it very debilitating I am currently attending a London hospital for this so I'm keeping everything crossed that they can help me, thank you once again.

[Sher]

Hi, I have spasmodic dysphonia, the adductor kind. I have suffered with this since 2004 and it's an horrendous condition that can leave you feeling isolated. I too have Botox injections every 4 months which temporarily corrects my voice but I do go down to a whisper for 2 weeks after. I understand there is currently no cure available but still live in hope. In the meantime I will continue with treatment just to get some kind of normal voice. I am hypothyroid and currently on a combination of t4 (50mcg) and t3 (10 mcg). The dysphonia did start around the same time as I was diagnosed with hypothyroidism but my GP says it was coincidental. At one point I had put on so much weight i didnt recognise myself, this was when I was on T4 only.

I went to see an Endo privately who put me on T3 only treatment. This was much better for me as i felt more myself and I lost the excess weight. My facial features also returned to normal as I developed a rounded shape. I also found that my voice lasted longer and was stronger in between Botox shots but the Endo got concerned with my blood results as my T3 was high and T4 was low so I agreed to introduce a small amount of T4. Still seeing how this goes. I hope all goes well for you as dysphonia is very distressing. Do get in touch if you wish to discuss further as I have a good voice at the moment. Next injection in November!

[Beautifulrainbow in reply to Sher]

Hi I to have have spasmodic dysphonia and they thought at one stage I had dysphagia as I couldn't swallow properly and the weight was falling in off me. After several attempts with Botox that didn't work so I am now waiting for my second round of throplasty which worked well so its just,the waiting game I could go private but cant really afford it