I went to see my doctor today regarding the extreme fatigue and muscle weakness have been experiencing since I had my vfs surgery just over two and a half months ago.
He advised that the second batch of my blood tests came back normal, and that I could be suffering from sleep apnea at night as a result of a possible airway restriction following my vocal cords surgery.
He went on to explain that many people suffering from daily fatigue are not aware it's their sleep apnea as it happens during their sleep. Apparently, they can stop breathing up to a hundred times a night.
Does anyone have any info on this condition following vfs?
I wouldn't think that VFS would close the passage that much and I have had not problems with it. Actually I am sleeping better than I have in the last 2 years but it's not related to VFS. It would be easy enough to have a peek down there and see what's going on. Most of the time Apnea is caused by being over weight or a naturally occurring problem. I will wake myself if I sleep on my back with my snoring so I normally sleep on a side or once in a while my stomach. It's possible you have had the problem for a long time and it has reached the point where it's now disturbing your sleep.
My boss who is relatively skinny developed it and they did an overnight sleep study. After only a few hours, they woke him and told him he could go home. He now uses a Cpap machine in order to get a good nights sleep.
Thanks Dena,
I am far from from being Overweight; in fact,y friends would describe me as being slim. However, I've been told that I do snore during my sleep sometimes.
The other path I'm exploring to determine the origin of my extreme fatigue is hrt as my dose was halved four months ago, the first time in my 7 years of being post op.
Are you taking the clonazepam or other medication? Hormone dosages can change a lot of things. I would not reduce dosage after surgery. Target should be the hormone status of a young woman in her 20ies. This means higher estrogen dosages as usually given to prevent menopausal symptoms and it also means that one should have some progesterone and also a tiny bit of testosterone (usually produced by the adrenal glands).
Dr kim advised not to take the clonazepam before the 4 month mark.
With regards to hrt, i went back to my original dose (assuming that's what's causing the problem).
I have also been looking into adrenal fatigue which seems to cause similar symptoms. My facial skin has become very oily, and the back of my hands has turned extremely dry and somewhat flaky.
Quote from: Ritana on March 24, 2016, 06:07:29 PM
Dr kim advised not to take the clonazepam before the 4 month mark.
With regards to hrt, i went back to my original dose (assuming that's what's causing the problem).
I have also been looking into adrenal fatigue which seems to cause similar symptoms. My facial skin has become very oily, and the back of my hands has turned extremely dry and somewhat flaky.
I have been attributing it to anxiety over my seemingly failed results and constant worrying that I will never be able to speak normally again but I can definitely say that my sleep schedule has been completely out of whack since my surgery and my general energy level has been noticeably lower...for what it's worth.
Kwala, in my case it's not just a normal fatigue. I have been suffering from a severe muscle weakness to the point where I can't get out of bed in the morning. That's how bed it's been! I do wake up sometimes at night with hot flashes, and i am just devastated that the doctors couldn't find anything. This has been happening only since i had my vfs just over two and a half months ago.
Quote from: Ritana on March 24, 2016, 06:07:29 PM
With regards to hrt, i went back to my original dose (assuming that's what's causing the problem).
I have also been looking into adrenal fatigue which seems to cause similar symptoms. My facial skin has become very oily, and the back of my hands has turned extremely dry and somewhat flaky.
Estrogen suppresses sebum/oil production. How do you feel since going to your original dose? Keep us posted.
Sleep apnea can come from multiple sources. You may have had it prior to VFS and unaware of it.
The best way to find out is via consultation with an ENT and having a sleep study. From there, you can find out whether you need surgery or alternatively, need orthodontic treatment to alter the position of your lower jaw.
Quote from: Ritana on March 24, 2016, 06:07:29 PM
I have also been looking into adrenal fatigue which seems to cause similar symptoms. My facial skin has become very oily, and the back of my hands has turned extremely dry and somewhat flaky.
That can well be. A LOT of people on HRT in the long run have gotten this, I observed. Including me. Especially if HRT dosages are a bit low, if estrogen is given as pills (causing high estrogen dosages but low estradiol dosages) and if progesterone is missing. If you have very low Testosterone in blood tests, thats a sign for adrenal fatique as well.
Thank you, girls!
I have just come out of hospital where I spent two days under observation at the emergency department. I was taken by a friend after I was literally unable to get out of bed in the morning. It has been almost 3 months now that I've been suffering from exteme incapacitating fatigue combined with heavy breathlessness. I am on a sick leave right now.
Unfortunately the hospital blood tests came back normal. The two doctors who treated me think It's stress related when in fact I have been so happy to have had vfs which has dramatically altered my voice.
If my condition was caused by low estrogens, I suspect this would have affected other blood tests. My endo can't see me before 7th April, and the doctors at emergency services said they don't deal with hormonal issues. My GP, says her knowledge is limited when it comes to the functioning of the endocrine system in trans people.
I really hope I haven't contracted a chronique fatigue syndrome (CFS), which lasts at least two years, has no explanation by the medical community and has no treatment or cure either!
As I previously said, I have recently increased my estrogen dose back to what it was a few months ago, but it might take a little while start seeing the effects on my health (that's if low e was to blame for my condition).
For exploring issues related to sleep apnea, I have to be referred to a specialised clinic where I will have to spend at least two nights under observation. Fatigue alone dies not consitute an urgent referral, alas. The referral process is bound to take a few months. In the meantime, I continue to suffer!
A thought just crossed my sleepy mind. You might have contacted something while you were in Korea that's not in the states. If you haven't mentioned it to the doctors, make sure they are aware that you were traveling out of the country.
In Arizona we have something called Valley Fever and I had it as a child. A doctor from outside the area looking at a chest X ray would think I have serious lung cancer but I have known about it for about 38 years and it hasn't killed me yet.
Thanks Dena,
I did inform the doctors of my trip to Korea. At first they thought that I might have contracted a type of hepatitis. However all my blood tests came back normal.
Did they do hormone tests on you in the fecility but cannot interpret them? I could take a look if that is the case. There are littel special trans issues regarding hormones - your target levels are that of a healthy 25 year old woman...
There are as far as I know Apps for the smartphones that deal with sleep apnoe and snoring and also with REM phases and such. They may be able to get you a first impression of this is something you should look into more. I am not knowledgeable about those things though. Do you sleep on the back or side usually?
Anja,
I am 90% certain the origin of my problem is sleep apnea as I do wake up several times during the night gasping for air. Why has this only been happening since my return from Korea? I suspect it's to do with the larger than normal dose of botox I was given by Dr Kim to discourage me from speaking. I had to refrain from speaking longer than the average patient ( I had an additional simultaneous surgery to correct vocal cords scarring which I hadn't been planned for).
The botox injection may have hit some irrelevant muscles causing them to relax which may have resulted in an airway obstruction (obstructive apnea). This prevents the body from reaching deep restorative phases of sleep. That is why people suffering from sleep apnea end up experiencing extreme fatigue, drowsiness, headaches, etc.
I also read that sleep apnea can cause testesterone deficiency in both men and women, which in turn causes further body weakness. What a vicious circle!
Here is the link:
https://www.drugwatch.com/testosterone/sleep-apnea/
Dang it, I forgot about Dr Kim's love affair with Botox. I think the Botox may have migrated and you may be more sensitive that most to it's effects. Botox is nothing more than refined botulism which is among one of the deadliest poisons. I found a link to a list of effects and you have a few that are on the list. Because your exposure was limited, I wouldn't expect you to have all of them. I would guess if that is the problem it might take 4 to 6 months to get it out of your system.
http://www.mayoclinic.org/diseases-conditions/botulism/basics/symptoms/con-20025875
Omg, those side effects! Thanks for the link Dena.
Botox usually starts working a week after the injection. I started suffering about a week after my return from Korea, which coincides with the one week mark post botox.
I read somewhere that one of the causes of sleep apnea is that the brain fails to send a message to some laryngeal muscles telling them not to relax. Their relaxation results in what we call obstructive apnea (the total or partial closure of the airway passage). Obstructive apnea leads to a partial depravation of oxygen in the blood. Even after a special device has been fitted to clear the airway and enable the patient to breathe. Apparently, it takes a few months for oxygen levels to be restored. The botox I had does cause some laryngeal muscles to relax. As I previously said, I had a larger dose injected, and as Dena mentioned it may have migrated to the surrounding muscles.
Last night, I woke up at least 30 times gasping for air (according to a friend who's staying with me). Needless to say, I feel absolutely knackered when I wake up every morning. Sleep apnea can be extremely dangerous. It can cause heart problems, palpitations, stroke and even death!
I have scheduled an appointment with a specialist for next week, so fingers crossed!
Oh, that sounds like a reasonable theory. Additional Botox may cause this. Dr Kim injects the Botox only a week after surgery in order to be sure to hit the right spot and dosage before that it is still too swollen and there could be leakage out of the area he injects, he told me.
Lets hope a specialist can help with maybe some device that helps breathing. Botox should wear off after 3 months with Dr Kims injections. They are not high dosage - you CAN speak after surgery with the Botox in effect, but it is not really great (its in the "1-2 words a day allowed phase", so I tried once).
Since there is a connection to testosterone, one thing that may sound absurd could be that you should check testosterone levels. If they are too low, you may have to add some (or reduce antiandrogens if you take those). I personally do add a very tiny bit of it daily (about 1/10th or 1/20th of the dosage a man would get who had orchie for medical reasons) and it helped me a bit with various issues that have to do with muscle weakness (without me getting all hairy bearded monster of course ;) - I am still well within the female range for testosterone blood levels)
Anja
I haven't taken anti-androgens for the last 7 years I have been post op. I am sure HRT is not at the source of my problem. Breathing difficulties, fatigue and muscle weakness are just some of the side effects of botox. The reason why other patients have not experienced these has probably to do with the dose. Dr Kim gave me a larger dose than the average patient to discourage me from speaking.
I can now understand the reasons for my condition. Here is the link that explains the side effects in detail.
http://www.drugs.com/pro/botox.html
Dysphagia and Breathing Difficulties
Treatment with Botox and other botulinum toxin products can result in swallowing or breathing difficulties. Patients with pre-existing swallowing or breathing difficulties may be more susceptible to these complications. In most cases, this is a consequence of weakening of muscles in the area of injection that are involved in breathing or oropharyngeal muscles that control swallowing or breathing [see Warnings and Precautions (5.2)].
Deaths as a complication of severe dysphagia have been reported after treatment with botulinum toxin. Dysphagia may persist for several months, and require use of a feeding tube to maintain adequate nutrition and hydration. Aspiration may result from severe dysphagia and is a particular risk when treating patients in whom swallowing or respiratory function is already compromised.
Treatment with botulinum toxins may weaken neck muscles that serve as accessory muscles of ventilation. This may result in a critical loss of breathing capacity in patients with respiratory disorders who may have become dependent upon these accessory muscles. There have been postmarketing reports of serious breathing difficulties, including respiratory failure.
Patients with smaller neck muscle mass and patients who require bilateral injections into the sternocleidomastoid muscle for the treatment of cervical dystonia have been reported to be at greater risk for dysphagia. Limiting the dose injected into the sternocleidomastoid muscle may reduce the occurrence of dysphagia. Injections into the levator scapulae may be associated with an increased risk of upper respiratory infection and dysphagia.
Patients treated with botulinum toxin may require immediate medical attention should they develop problems with swallowing, speech or respiratory disorders. These reactions can occur within hours to weeks after injection with botulinum toxin.
Quote from: anjaq on March 30, 2016, 05:48:27 AMSince there is a connection to testosterone, one thing that may sound absurd could be that you should check testosterone levels. If they are too low
How do we determine if it is too low? Too low for some might be good for others or suitable for some might trigger undesirable androgenic effects in others. The range in ciswomen can be pretty wide, from 10-90 nd/dl. There is something called sensitivity to hormones and a test (levels alone) cannot determine this. I personally think too low T is not a problem as long as you are getting enough E, and perhaps P which keep the mind happy, sustains libido and gives energy.
QuoteI personally do add a very tiny bit of it daily (about 1/10th or 1/20th of the dosage a man would get who had orchie for medical reasons) and it helped me a bit with various issues that have to do with muscle weakness (without me getting all hairy bearded monster of course ;) - I am still well within the female range for testosterone blood levels)
Why do you need muscle strength? What are the issues you experienced?
Well sleep apnea does affect testosterone levels. Here is the link,
https://www.drugwatch.com/testosterone/sleep-apnea/
I am not concerned about my testosterone levels right now as all the symptoms I have been experiencing so far are related to botox side effects. I am glad I didn't more severe ones so far!
Well I guess Botox effects should get less and so should the side effects with time, so it should not get worse, right?
Quote from: KayXo on March 30, 2016, 01:27:52 PM
How do we determine if it is too low?
Well there are some symptoms that can occur. Loss of libido is just the most obvious one. I personally believe in trying to get the hormone levels of a healthy 20-25 year old woman and in that age group, estrogen and testosterone are higher than what is usually given as the lower range limit for blood tests, which are usually applied to older women who have hormone problems.
QuoteWhy do you need muscle strength? What are the issues you experienced?
Well, you asked for it :P - I had bladder/urinary issues. Also issues with my back muscles who were weakened and maybe also my vocal muscles. A problem is, I cannot really say which did what as I changed my hormone therapy to include Progesterone and some Testosterone at almost the same time and my health improved massively - I think most of it was because of the P, not because of that little T that bumped my blood levels from "not measureable" into the lower or middle female normal range.
Quote from: anjaq on March 30, 2016, 03:58:00 PM
Well there are some symptoms that can occur. Loss of libido is just the most obvious one.
Higher estrogen improves libido.
Ernst Schering Found Symp Proc. 2006;(1):45-67"estrogen deficiency results in a spectrum of symptoms. These include loss of fertility and libido in both males and females;"
QuoteI personally believe in trying to get the hormone levels of a healthy 20-25 year old woman and in that age group, estrogen and testosterone are higher than what is usually given as the lower range limit for blood tests, which are usually applied to older women who have hormone problems.
In healthy 20-25 yrs old women, estrogen levels aren't constantly elevated. They increase and decrease on a monthly basis, from 20 pg/ml (very low) to 650 pg/ml (high).
QuoteI had bladder/urinary issues.
What issues exactly?
QuoteAlso issues with my back muscles who were weakened and maybe also my vocal muscles.
You had voice surgery, no? Could that have affected vocal muscles?
QuoteA problem is, I cannot really say which did what as I changed my hormone therapy to include Progesterone and some Testosterone at almost the same time and my health improved massively - I think most of it was because of the P, not because of that little T that bumped my blood levels from "not measureable" into the lower or middle female normal range.
So there you go! You agree. T probably didn't do anything. And had you raised E instead, this too could have improved symptoms. P also could have led to improvements because it relaxes muscles.
I found this info on the effects of botox on breathing. It explains why I have been having breathing difficulties, especially at night, resulting in day fatigue and weakness. I have never had breathing difficulties prior to having botox. It coulf have to do with the large dose that was injected.
http://botoxjuvedermdoctor.com/botox/safety-information/
BOTOX may cause serious side effects that can be life threatening. Call your doctor or get medical help right away if you have any of these problems any time (hours to weeks) after injection of BOTOX:
Problems swallowing, speaking, or breathing. These problems can happen hours to weeks after an injection of BOTOX® or BOTOX® Cosmetic usually because the muscles that you use to breathe and swallow can become weak after the injection. Death can happen as a complication if you have severe problems with swallowing or breathing after treatment with BOTOX® or BOTOX® Cosmetic.
People with certain breathing problems may need to use muscles in their neck to help them breathe. These patients may be at greater risk for serious breathing problems with BOTOX® or BOTOX® Cosmetic.
Swallowing problems may last for several months. People who cannot swallow well may need a feeding tube to receive food and water. If swallowing problems are severe, food or liquids may go into your lungs. People who already have swallowing or breathing problems before receiving BOTOX® or BOTOX® Cosmetic have the highest risk of getting these problems.
Spread of toxin effects. In some cases, the effect of botulinum toxin may affect areas of the body away from the injection site and cause symptoms of a serious condition called botulism.
They have an anti toxin for botulism that they use to treat people who are suffering from botulism exposure. I don't know if they would use it in a case like this or just wait for the toxin to wear off.
I certainly hope this gets better soon, Ritana. How many weeks has it been now since you had the injection? Hopefully your body breaks it down quickly!
Thanks !
I had my injection on 14 January so I am one week short of 3 months. I really hope the effect is going to wear off soon.
Well, it should wear off within the next month then. *crosses fingers* And, hopefully that was the problem, too...
I have some good news!
Over the last 3 days, I have been feeling slightly better. I feel like I'm getting more energy and my mood is getting a little bit better. I have been able to force myself to have some short distance walks (something which has been impossible since my return from Korea ). Let's hope the progress will continue to take place!
VFS did come at a heavy price in every sense!
Great news. :) Now that you can do some distance walking again, that will help give you your energy back!
I started taking Clonazepam 5days ago as my voice started started breaking (as a result of the botox effects wearing).
What side effects did you have from the Clonazepam and how long did they last, Anjaq?
I had little side effects of actually taking the clonazepam. Maybe I am a bit more tired than usually, I think especially in the evening when it is time for the next dose, I am getting cranky. (After all it causes some addiction). Its hard to say if it has any effects - my pitch did not increase dramatically or anything, I do not know if I have side effects or if what is going on otherwise with me is just normal ups and downs. What I did notice was however when I stopped taking it, I had withdrawal effects, so I had to slowly ramp it down over 2-4 weeks to not get too many of those. Dizzyness, nervousness, restless legs, muscle pains,... things like that. Also my voice went worse for that time. Afterwards it was better though - the voice recovered from the withdrawal and I was ok as well - I hope the second round of Clonazepam will not be worse in the withdrawal time...
Are you supposed to take it during the evening? Jow long did u take it for?
Yes absolutely in the evening because it can make you drowsy or tired or slow.
I took the pills from Dr Kim until they ran out, then had 2 months break and then he asked me to start again so I got a local prescription that probably will last for another 6 months in total (started in February)...
Oh dear, so Clonazepam doesn't seem to be a temporary thing! My voice started breaking lately and that has caused a drop in the pitch.
As fas as I know I am the only one so far who is on that drug in the long run :( - Most have it less than 3 months
I really hope the croaky voice will be restored so that I get back a decent pitch; otherwise, all wha've been through to have the surgery would've been in vain!!
Quote from: Ritana on April 13, 2016, 01:45:43 AM
I really hope the croaky voice will be restored so that I get back a decent pitch; otherwise, all wha've been through to have the surgery would've been in vain!!
Hang in there girl! Stay positive and eveything's gonna be alright! :icon_hug:
Thanks Bmiranda,
It's been over three months since I had my surgery. I thought by now my voice would be clear enough. I am somewhat disappointed.
Anja, Dr kim keeps saying you need to adapt to your new vocal folds to avoid a new tremor, but I don't know how? There's no speech therapist around where I live to consult!
How are you supposed to adapt?
I wish I knew, Ritana. He told me the same thing but when I tried to get someone to explain it better to me I still never understood. :(
I find there's a lot of ambiguity in the advice given by Yeson with regards to post-op instructions. The voice training exercises, for example, they're explained to you AFTER the surgery while you're mute so there's no chance of you practising or asking questions. "You need to adapt your vocal folds", but how? "You need to do the laryngeal massages", but how often and for how long each massage? Same goes for for the breathing exercises and their frequencies.
I am lost because there's no specialised speech therapist to consult in my area and neither my health condition nor financial ciscumstances would allow me to travel hundreds of miles to see a speech therapist. My voice keeps breaking and sounds quite croaky at the moment. I hope this will be sorted soon.
Any advice from post-op girls would be appreciated.
Quote from: Ritana on April 14, 2016, 07:33:35 AM
The voice training exercises, for example, they're explained to you AFTER the surgery while you're mute so there's no chance of you practising or asking questions. "You need to adapt your vocal folds", but how? "You need to do the laryngeal massages", but how often and for how long each massage? Same goes for for the breathing exercises and their frequencies.
Wow this is serious stuff and a huge red flag for me to consider going there. Not only for the fact in and of itself, but also because they are totally aware of this situation (they are, RIGHT??), yet they do it this way. Thank you for posting this because now I know that, wherever I finally go, I know I should ask for all these details
before the surgery takes place.
Well, I still hope someone who is going to be at Yeson soon will ask that - specifically the part about why not do the exercises before the surgery, so one can practice them. I think it makes sense to do that, but of course it would somewhat pack more stuff to do on that first of the two days there. But it totally makes sense and I think someone actually going there should ask about this. Also the other questions are something one should ask before the surgery. Dr Kim takes a lot of time answering all sorts of questions - I think I was in there with him for an hour, with him explaining the procedure and me asking some detailled questions about it - so its not like there is not the time, its just that at that time, most are not aware of post op issues to ask about. Later on, one is confined to short email conversations that are always a bit more cryptic.
I think the three questions here can be answered thoough as follows:
breathing exercises: do them in the first 8 weeks and later use that sort of breathing for the voice exercises. Its just abdominal breathing - same thing singers or public speakers do.
massages: do them when you feel pain or strain. Basically its "on demand" to relax the muscles there
the tricky part is "adapt to your new vocal folds or your new voice". I think no one really knows how it works. Not even Dr Kim or any other surgeon for that matter. patients have all experienced that there is clearly something different about how to use the voice post op to make it work properly, but its not something one can pinpoint. I could say that using a female resonance as is shown in other exercise programs helps, but then its a different way of doing female resonance than in those programs - but it is a bit like that. Basically we have to rely on feedback for that - speak or do the voice exercises and esperiment, try what works better or not so good - what to do to sound less croaky, less breathy, etc - and then keep doing that unless it strains the voice, then throw it out again. Its a learning process like learning a musical instrument. In theory you just speak ina relaxed feminine way - but how to do that needs to be learned by doing and trying to do. I think the exercises help, they put you in the right direction, the botox and clonazepam supposedly take away power from muscles that distort the voice, so those should make the learning easier - healing adds to it, so that the voice clearly will sound a lot better after 4,6,9,12 months than at 2 months...
I know that I can shout and I can speak very loudly now - but I am not sure how I do it differently, but I definitely do. One part is that I definitely need to (sometimes consciously) use a higher pitch than my brain would try to do - especially when speaking loudly and definitely when I want to shout - my pitch has to go way up when shouting, otherwise, I am not really audible - one has to find the right "spots" at which the voice works well... I think this takes time and one has to get a feel for ones own voice, experiment, listen and care for the voice.
Its really hard rehabilitation, I think - harder than many may think, who believe you just go there and follow some instructions and you get a perfectly female voice...
Honestly, VFS has been the toughest surgery I've had. It's not like have it done, recover within a month or so then forget about it ( like a BA, FFS, etc) and get on with your life. Recovery can be a lengthy and unpredictable process with an uncertain outcome (sigh!). Honestly, I feel for Kwala and those girls who've spent so much money and effort to end up with an unpleasant outcome!
Hi girls!
Some more good news!
I have made a full recovery, and I am now back to work.
It's been the worst 3 months of my life! One piece advice! Be careful of high doses of botox. They can ruin your life!! Do your research and read about this online!
Yay! Nice to hear that you're finally doing great girl !!! :icon_joy:
Glad to hear it's finally sorted, Ritana. I've woken up a couple of times per night sort of choking most nights since not long after my VFS, so hope it doesn't last too long. :(
Thanks Bmirinda!
Denjen, in my case that's how it started. Waking up in the middle of the night choking then it got worse from there. Let's hope it won't be the case for you!