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?