Concerning Symptoms

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Concerning Symptoms

Postby Scboy on May 2nd, 2014, 5:36 pm

I have been short of breath in my sleep lately. Also, it feels harder the breath during the day. Like clock works I wake up two hours after I go to sleep with a headache and fuzzy head feeling. It feels like hypoventilation. Then I sleep very lightly the rest of the night. My breathing during that time feels very heavy and I can never really go back to sleep fully. I also have weird heaviness under my ribs. My diaphragm almost feels bruised at times, especially after I exert myself. Oh by the way, I still twitch like crazy all over. Very worried. This has all started in the last three weeks. I pray that this is anxiety. My last emg was clean but they did not test the diaphragm.
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Re: Concerning Symptoms

Postby Red Raider on May 2nd, 2014, 6:11 pm

Have you ever been tested for obstructive sleep apnea? That's how I felt when I was diagnosed with sleep apnea short breath, headaches, fuzzy feeling couldn't sleep so that might be something to look into. You snore bad when you sleep? Ask your somebody to check on you while you sleep to see if you stop breathing that's what my wife did. I blame mine a lot on anxiety and getting worked up so it might be a problem worth looking into.
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Re: Concerning Symptoms

Postby Scboy on May 2nd, 2014, 6:27 pm

I am actually getting a sleep study done Monday. Hope this will show something. I had a pulminary function test that came back clean. They did tests in the supine position as well as upright. I had an emg at Duke last week and told the neuro my breathing problem. He tested a rib muscle, bulbar muscle and spine muscle. Don't know why he didn't test the diaphragm. I should have asked. I asked him point blank whats the probability this is ALS. He said 0%. I wish he would have said 0.1% or something. There ain't nothing 0%. Makes it sound like he's sugar coating.
This breathing thing really has me worried. Thanks for the tip.
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Re: Concerning Symptoms

Postby Red Raider on May 2nd, 2014, 8:41 pm

Dukes a good hospital my wife graduated from there she is a pediatric nurse practioner. I'm sure by now you would of started showing more than what you are showing. I've had breathing problem for almost a year now before I had the fear of ALS and never thought twice about it until I started twitching. I seen a ALS specialist in Dallas and he did my EMG and clinical and said I was fine I had BFS and anxiety I asked about the chest and breathing and all that and he said that if that was the case it happens very rapidly you don't go months twitching and not showing other signs. He said you would know something that's what he told me. Sleep study should put you at ease my friend plus you had a Clean EMG brother just like one person on here told me these guys don't get paid to make bad decision they wouldn't be in business long if your doctor thought you needed your diaphragm done I'm sure he would of done it. Your good brother get your sleep study done and get yourself a Cpap and you will see a huge difference. When I put my mask on it's like putting on a gas mask on my body knows it's time to sleep. Oh ya my pulmanologist also said if I had something bad in my lungs my PFTs would of been bad and FVC would of showed loss of function if ALS was eating up your breathing plus the percentage of someone getting ALS of the lungs and breathing is very low and plus if your a young person even lower. Very very rare.
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Re: Concerning Symptoms

Postby ShawnW on May 2nd, 2014, 8:44 pm

Good call Raider. Sleep apnea would be a much more likely culprit.
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Re: Concerning Symptoms

Postby Scboy on May 2nd, 2014, 9:24 pm

Can BFS cause cramps and exercise intolerance in the abdominal area? Just wondering why I'm hurting in that area.

Red raider. The Duke doc said the same. Respitory onset is not usually subtle.

I'm a numbers guy. About 1 in 50,000 have ALS. And about 3% of ALS is respitory onset. That would mean about 1 in 1.5 million have respitory onset ALS. Odds are heavily in my favor. I keep telling myself this. Symptoms are scary though.
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Re: Concerning Symptoms

Postby ShawnW on May 2nd, 2014, 10:32 pm

Scboy wrote:Can BFS cause cramps and exercise intolerance in the abdominal area? Just wondering why I'm hurting in that area.

Red raider. The Duke doc said the same. Respitory onset is not usually subtle.

I'm a numbers guy. About 1 in 50,000 have ALS. And about 3% of ALS is respitory onset. That would mean about 1 in 1.5 million have respitory onset ALS. Odds are heavily in my favor. I keep telling myself this. Symptoms are scary though.


Hyperexcitability can cause muscle fatiguability virtually anywhere. There is this weird phenomenon that when we worry about a specific place on our bodies we can develop symptoms there.
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Re: Concerning Symptoms

Postby Red Raider on May 3rd, 2014, 12:15 am

Symptoms are very scary I'm dealing with them everyday just like you brother. Maybe someday we can conquer these fears but this forum and a few people on here have been great to me and helping me through my problems. A lot of knowledgable folks on here.
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Re: Concerning Symptoms

Postby Yuliasir on May 3rd, 2014, 2:33 am

SCboy,
most probably you are HYPERventilated, not hypo.
Sleep study and blood gases test may show that.

Hyperventilation due to anxiety results in lowering CO2 in the blood. CO2 is in fact the component provoking you to breath. if CO2 is low, your breathing center just does not have enough excitation to control breathing rate and you feel heaviness in the chest, hypoxia etc. people with anxiety hyperventialktion complain for fatigue, chronic yawning etc.
There are quite a chances that your sleep study will show increased physiological central apnea during falling asleep. This is also a sign of hyperventialtion. many of our fellows reported such finding and some of them were scared to death becasues nobody explained them that increased central apnea interval is a result of low CO2 in the blood which is not high enough to excite breathing center during transition from wake to sleep and back.
That is why our fellows often report scary episodes (I had one too) when you wake up really unable to breath or wake up with a true feeling of an elefant sitting on your chest.
usually this is releived either wil lowering anxiety, or with breathing tecniques or with the good help of CPAP.

I had read recently a report about an old lady who was enable to sleep, and no medications could help her except really a bull dose of some mighty sedatives. She had to undergo a sleep test study and it was found she had over 350 epidoses of apnea in 8 hours!!!!!!!! CPAP cured her in two weeks completely.

People who have central apnea due to MND usually do not have that as a separate syndrom - they demonstrate also a lot of other neurological changes. Most of them are of bulbar nature due to co-location of bulbar structures and breathing center in the medullar part of the brain (that is why bulbar onset usually kills far more quiclky than limb one). So your doctor really should not test your diaphragm provided your rib muscles and bulbar area (bulbar zone in the brain is also responsible for breathing activity, in fact our breathing control center is located there) did not show any signs of degeneratiove process.
So please consider this, and maybe it would help a bit to relieve your fears.
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Re: Concerning Symptoms

Postby Yuliasir on May 3rd, 2014, 2:41 am

I also would like to note a funny controversy in perception... usually when a fellow gets '99.9% sure it is not ALS' from a doctor, he or she complains about why not 100%.
When you got 100% not ALS from your neuro, you complain that you still need that 0.1% of death sentence to feell better emotionally.
Again I see that trend in us - like we sometimes really NEED to hear a death sentence in order to put a fear aside.
Sugar coating? Ha ha ha.
When the doctor says to a cancer patient: well, there are 60 % chance that you will survive 5 years after chemitherapy - THIS IS A SUGAR COATING.
When the doctor sasys to ALS patient - well, there is a chance that you may have extra 6 month on Rilutec or there is a chance that you may survive 10 years of the disease would be slowly progressing, or says look at Mr. Hocking - this is a sugar coating.

your doctor just had nothing bitter to tell you and therefore nothing to sugar on.
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Re: Concerning Symptoms

Postby Scboy on May 14th, 2014, 7:51 am

Sleep study came back normal. Don't know what to think about it. Still don't breath comfortably at night.
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Re: Concerning Symptoms

Postby Red Raider on May 21st, 2014, 11:47 pm

Have you ever tried some sleep meds?
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Re: Concerning Symptoms

Postby nrwtwitcher on May 22nd, 2014, 3:28 am

Yes, but they did not help in my case. I am trying gabapentin now and sometimes my sleep is a little bit better...sometimes. But I have read in this forum that klonopin helps a lot in most cases, with a better sleep and with a reduced twitches. I have asked my neuro about it, but he would not prescribe it... but you can ask your neuro about it.
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Re: Concerning Symptoms

Postby Scboy on May 22nd, 2014, 9:03 am

Yes, I have used sleep meds from time to time, however; I've discovered that my sinuses were/are very swollen and my nostrils collapse easily when I inhale. No mucus just swelling. Allergy testing revealed that the only allergy I have is to dust mites, but it was as a severe of a reaction as the dr has ever seen. I tried Afrin one time and was amazed at the difference. I felt like I could run a marathon. I'm now on nasanex, a breathing strip at night and allergy medicine. I'm also buying a new mattress and pillow with allergy covers and making sure my room stays clean and dust free. (wife is happy). I think this may very well have been the root cause of all my previous sleeping problems. Well that and getting old. Probably the reason the sleep study went well is because it was in a dust mite free environment. You would think that I would have picked up on this before now.

I'm not a big fan of Klonopin or any benzo for that matter. Very seducing drugs. Short term benefit, long term problems. They cause all kinds of symptoms once you hit tolerance and begin to feel withdrawals.
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Re: Concerning Symptoms

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