Breathing Problems That Sound Weird

[rickmcmahan]

I have been up most of the night tonight due to having problems with getting the air out of my lungs without these aggravating weird sounds coming from my throat. At times there seems to be resistance to the air leaving my lungs. Is this the vocal cords closing up that are creating the sounds and restrictions? Or is it muscle weakness in the throat that can cause this? I have bulbar onset and cannot speak any more and cannot drink liquids without choking. I can eat some foods but not many. I do have a feeding tube that I use every day. Tonight was the first time I just had to get out of bed due to these strange sounds when I exhale the air from my lungs. Any idea what is causing this? If so, let me hear back from you on this. Thanks. Rick

[Pearl]

Rick, I don't have an answer for you but I just wanted to say how sorry I am that you are experiencing problems with sleep. It sounds like the muscles are relaxing when you try to exhale (but I could be wrong). Do you already have a respiratory therapist to call?

[Al]

Rick I'd get to a doctor. You could have aspirated something or have the start of pneumonia. Do you have any fever?

[rickmcmahan]

I seem to be doing ok. Yesterday (the day I posted the post) everything was ok. But last night was very frightening! I took my colace medicine at bedtime like I do every day. But for some reason the pill stuck in my throat without my knowing it was there. A few minutes later I noticed sevier irritation in my upper throat resulting in large amounts of very thick saliva just running out of my mouth. At one point I could not even breath for about 15 seconds. After that short periiod I had extreme difficulty in getting air both in and out. The pain in the throat was strong I guess due to the medication pill that had started to dissolve in my throat. Anyway, at one point I considered going to the ER because I had no trouble beathing air in, but to get it out met strong resistance. But after a while I was able to get the air in and out but breathing out continued to meet resistance all night which resulted in a weird sound like I mentioned in my original post. I wound up sleeping in my recliner all night. My breathing is now ok with no resistance to air movement and also no weird sounds when I exhale now that I am up and out of sleep mode. I survived!!!! Just hope it does not happen again. No fun.

[Brentt]

It's hard to break old habits.I crush all pills and put them in liquid so it can be administered through the feeding tube. Colace is super nasty when you get it in your mouth I can't imagine one dissolving in your throat that had to be rough .If you are having problems with constipation I have some remedies.

[rickmcmahan]

Brentt,

I do crush all medication that can be crushed and dump them down my tube. But the Colace I use (Wal Mart Equate Brand) is a gel capsule. So you cannot crush them. What alternatives do I have with gel caps. My Co Q10 is also a gel cap. I sure wish I could get them both down the tube. Thanks for your info. Rick

[Brentt]

I take the same colace in the gel cap ,all we do is cut the end off or poke a hole in it and squeeze the liquid into some thing like the formula.It blends easily no oily substance in colace.The C Q 10 is actually tasty so my wife squirts a capsule in my mouth and I just let it melt .I also do the same with vitamin E .I know what you mean though ,the E and cq10 just won't go down the tube .If you are choking on everything it might not work for you so be extra careful. I have a problem with things that are the same consistency as water but thick things don't cause a problem .Good Luck !!!
By the way the gelatin is not good for you. All gelatins are a bad thing for us it contributes to the glutein that's being over produced in our brains .That's what causes the death of cells in a specific order but I don't want to get technical.

[ronney525]

hi. i get a colace liquid. ask the pharmacist...... much easier...

[lunarruna]

Rick...I think they refer to your breathing problem as 'stridor' (sp?) --it just started happening to my husband too and I am trying to learn about it....he is just recovering from aspiration pneumonia and has just started on BiPap.
Beth

[rickmcmahan]

Lunarruna,

Can you please give me your husbands symptoms or sounds. I got up again today at 4 AM due to my vocal cords making sounds when I exhale. After laying in the bed awake for about an hour I said it is time to get up. When I stand up, the strange sounds and exhaling resistance seems to go away. Anybody know why standing up would help? Is is saliva stagnating in my vocal cord area that is causing the vocal cords to vibrate when I exhale? Share your thoughts with me on this one. I wind up almost every night having to get up and go sit in my recliner due to the weird noises my breaking creates. I also get up out of the bed to keep from waking up my wife. Feedback please. Thanks

Rick

[Al]

Could be one of two things I think. Sleep apnea when the throat relaxes and falls down and causes a restriction in the air passage and usually but not always happens if you are overweight. Bulbar symptoms can also do this because of the weakened muscles not supporting the tissue in the mouth and throat and causing the restriction. When standing or sitting there is more support to hang straight than collapse backwards. Could also be the saliva and phlem sitting in a pocket in the throat rattling away. Stand up and you swallow better and lose the saliva.

[lunarruna]

Rick....we think it was saliva/phlegm in his throat, but it has something to do with the vocal cords because it makes a different sound (snoring-like; more vibratory?) than other times when he has phlegm in his throat...I havent had a chance to look into it but our nurse was reading up on it after hearing him do it...with him it was happening during the day and it would come on almost like an asthma attack type thing and he felt as if his throat was swelling shut but it wasnt really....I will say that once we got this BiPap it hasnt happened againn even though he only uses it a few hrs a day. Also, this was happening to him during aspiration pneumonia so beware and be sure you dont have a fever as Al mentioned.
Beth

[paula B]

I was put on bipap,,,with a humidifier. First night i used it was last night,,after 5 hrs i woke up and my throat was just raw and so dry. My throught and mouth was always dry,,well since als but never raw like this and i just dont know what i did wrong. Any advise?

PaulaB

[janf]

Hi Everyone, I also have weird sounds. Sounds like a air machine in my chest and or snore like sounds in my chest . I had pneumonia last Dec.and I've never fully recovered. I had a chest xray and no one will call me back to get my results.(1mo. ago):cry:

[Al]

Hi Paula. Does the humidifier have a heater on it? Turning up the heat puts more humidity in the air. I also have a cup of water next to the bed like they have in hospital with a stiff straw so that I can just put the straw under front of mask to get a sip of water without taking off mask. Don't fill cup full of water because air pressure will blow water everywhere soaking you and you'll have to get up then any way. I guess you know how I figured that one out. Hope this helps. AL.

[paula B]

Yes humidifier has heater on it,,i will turn it up more tonight and see if it helps.
I am LOL just thinking of you taking a sip of your water and the air spraying it everywhere,,,,see your a nice guy and warned me,,,i on the other hand may have not told about that part and then asked to see if they tried it out and then i would have said opps forgot to tell ya that,,,lol that really made me giggle. Funny thing,,,now a days when i lol there is no sound,,so unless someone is looking they dont know i am lol.
what does that mean?

Thanks for the giggle AL
PaulaB

[kc074@sbcglobal.net]

Brentt,

I do crush all medication that can be crushed and dump them down my tube. But the Colace I use (Wal Mart Equate Brand) is a gel capsule. So you cannot crush them. What alternatives do I have with gel caps. My Co Q10 is also a gel cap. I sure wish I could get them both down the tube. Thanks for your info. Rick


Hi Brentt,
They sell CoQ10 in tablet form at a pharmacy near us (APEX). The brand is Kirkman. I use and a mortar and pestle and crush them for my husband. Just thought I would let you know. Perhaps you can find them on the internet if a pharmacy doesn't carry them around you. Kate

[terri]

Hi Brentt,

You might want to check with your pharmacist on a liquid Colace. The one we bought is just a stool softner but they may have it with a laxative too if that is what you need. The stuff is more than terrible if you try to take it by mouth! LB tried it twice in all sorts of sweet cover-ups but nothing helped. I wish you were near by and I'd just give you this bottle that we have! It's definitely for dumping in a tube and not in the mouth!:)

[quadbliss]

Hi Brentt,

We dissolve all my meds in warm water before pushing them through my PEG. They take less than 5 minutes to dissolve, and gel caps work too.

Mike

[georgia]

On another site they were talking about liquid CoQ10 and one that can compounded with other vit and flavors and types and insurance covered.
http://www.als.net/forum/topic.asp?TOPIC_ID=1085&whichpage=1&SearchTerms=compounding


http://www.accrx.com/compounding





CoQ10. Here is a long report that I have shared with patients for years. It is a lot to read but be sure to read to the end where discounted CoQ10 may be ordered.

What is Coenzyme Q10 (CoQ10)?
Coenzyme Q10 (CoQ10, also known as ubiquinone) is a fat-soluble natural vitamin-like substance produced by the body. CoQ10 is involved in cell energy production and is an antioxidant that may protect cells against some kinds of damage.
Coenzyme Q10 is a non-prescription dietary supplement that is available over-the-counter at most drug stores and vitamin
stores. An excellent and comprehensive primer on CoQ10 can be found at: http://www.mcp.edu/herbal/coq10/coq10.htm.

Is CoQ10 effective in neurodegenerative diseases such as ALS?
Researchers have found that people with a number of conditions – including Parkinson’s disease, heart disease, cancer and others - have low natural levels of coQ10. Although many ALS patients may
include the dietary supplement CoQ10 in their treatment regimens, there is currently no human clinical data to suggest that CoQ10 might be effective in ALS.

However, there is some preliminary evidence from ALS and other neurodegenerative animal studies and from human clinical trials in Parkinson’s and Huntington’s disease that CoQ10 may be beneficial.
A study conducted at Massachusetts General Hospital in Boston
investigated whether CoQ10 could have a beneficial effect on a number of different animal models of neurodegenerative diseases.
The study’s results showed that in a transgenic mouse model of ALS, CoQ10 slightly extended the survival of treated mice versus a control group of mice.

CoQ10 has also been studied in two small human clinical trials at Columbia University to determine if this antioxidant has a substantial effect on the disease progression of ALS patients. One of these clinical studies is currently ongoing, and results of the original study concluded that the benefit of high doses of CcQ10 was difficult to determine in their open-label study and small trial size. However,since there was a slightly positive effect for those who completed the study,it justified the creation for a larger, more definitive clinical study of CoQ10 in ALS. A recent clinical trial in Parkinson’s disease that treated a limited number of patients with high doses of CoQ10 suggested that CoQ10 slows the progression of Parkinson’s disease in a dose dependent fashion.
Three doses were used in the study, and the greatest benefit was observed at the highest dose of 1,200 mg per day—this dose slowed disease progression by 40 percent. At 600 mg per day the results slowed the disease, but by a lesser percentage. These studies used a functional scale for evaluating Parkinson’s and were not designed to measure any effect of the drug on survival.

Similarly, researchers conducting a clinical study in people with Huntington ’s disease found less functional decline in patients who were taking 600 mg per day of than in those who were taking a placebo (sugar pill).
Though ALS, Huntington’s disease, and Parkinson’s disease share similar biological pathways and therapeutic targets, it is not known whether CoQ10 will have a similar effect in people with ALS. This will only be known when a controlled clinical trial has been conducted in ALS patients.

What dose of CoQ10, if any, is the right one?
There is currently no human clinical data to suggest that CoQ10 could be beneficial at any dose in ALS patients. Based on the
human data from the Parkinson’s study it appears there is an increased benefit at a higher dose. The Parkinson’s study had its maximum effect at 1,200 mg/day. Additional clinical trials in Parkinson’s are being conducted now using a dose of 3,000 mg/day. However, this dose information is relevant only to the specific form of the supplement used in these trials. Since the way that the CoQ10 is delivered to the body can have an impact on the supplement’s effectiveness, it is difficult to draw the conclusion that a dose
of 3,000 mg/day in CoQ10 capsules would have the same impact as 3,000 mg/day in liquid CoQ10 or another formulation.

Unfortunately, given the wide variety of absorption data on CoQ10, it is very difficult to test or know with any given product how much CoQ10 is being absorbed or used by the body. Without a full pharmacology study using a specific formulation of CoQ10, it is not possible to know what an effective dose is for this disease.

Is CoQ10 Safe?
No major supplement or drug should be taken without the involvement and advice of your physician. Other than the Parkinson’s study, which found that CoQ10 is well tolerated with a low incidence of side effects when administered long-term at doses up to 1200 mg, there is no data on chronic use of CoQ10 at elevated doses. There is limited published data on the short-term use of CoQ10 at doses as high as 3,000 mg/day, and again it was well tolerated with low side effects. However, there is no data on the safety of CoQ10
when it is delivered long-term at this high dose. (Some medications may be safe at high-doses in the short term, but may have side effects when delivered chronically for several weeks or months.)

It is important to note that CoQ10 is often packaged with vitamin E included in the supplement. High levels of Vitamin E can cause diarrhea and loose stool. However, nearly all of the published animal and clinical data on CoQ10 come from studies that used versions of the supplement that include Vitamin E.

Side effects of CoQ10:
Roughly two percent of individuals using CoQ10 experience side effects that may include nausea, stomach upset, diarrhea, rash, headache and irritability. The Parkinson’s study found that CoQ10 was well-tolerated over a 16-month period.

Cautions:
According to the Longwood Herbal Task Force at the Massachusetts College of Pharmacy: “people with liver damage may need lower doses of CoQ10, because the liver helps remove [the substance] from the body.” In addition, people taking medications for diabetes or to lower cholesterol should ask a health professional whether it is safe to take CoQ10, which may lower blood sugar, decrease blood pressure and elevate liver enzymes. There is currently no
data on the safety of CoQ10 use in children or women who are pregnant or breast feeding. Although there is no concrete published data on CoQ10’s interactions with other drugs, some information sheets about the supplement caution that CoQ10 may interact with certain blood thinners, such as Warfare (Comedian).

What version of CoQ10 is the best?
CoQ10 is available from many manufacturers in a number of different forms. Since CoQ10 is involved in the energy cycle of the mitochondria (mitochondria are the principal energy source of the cell and converts nutrients into energy as well as doing many other specialized tasks) and interacts with Vitamin E, some manufacturers have combined CoQ10 and Vitamin E into one product. Different products will contain different ingredients.
As mentioned above, all of the published animal and clinical data on CoQ10 come from studies that used versions of the supplement that include Vitamin E.

There is little consistent data on the purity or bioavailability of CoQ10.Bioavailability is a measure of how efficiently a dose of a drug is absorbed into the body – although a ‘capsule’ of CoQ10 might contain 100 mg of the supplement, only a certain percentage of this dose will actually make it into the body and the bloodstream. Since bioavailability can vary depending on the formulation of the drug (whether it is in capsules, soft gels, liquid form, etc.), a ‘dose’ of 100mg/day of CoQ10 from different manufacturers might result in different levels of CoQ10 in the body.

Several manufacturers have worked on developing enhanced bioavailability forms of CoQ10. Manufacturers use a number of techniques to improve the chances of supplements and drugs being absorbed into the body, including changing the size of the particles and binding drugs to other materials/nutrients to make them easier to absorb. If the bioavailability of CoQ10 were improved, then a patient could achieve a high concentration of CoQ10 in the body by taking a lower dose of the supplement.

Consumer Labs is a company that provides independent test results and
information to help consumers and healthcare professionals evaluate health, wellness, and nutrition products. They are a good resource to evaluate the purity and consistency of nutraceutical products. For a listing of manufacturers and products that passed their review, or to read their test results, please visit www.consumerlab.com.

Selected Manufacture Profiles: We have profiled three manufactures of CoQ10 and have been able to arrange for one company to offer a reduced price on CoQ10 for ALS patients. The first manufacturer supplied the product for the Parkinson’s trial. The other two have data suggesting that their products may have improved bioavailability compared to other CoQ10 supplements. One
manufacturer offers a liquid form that works with feeding tubes.

We here at ALSTDF do not have any data on the use of any of these formulations or their efficiency in ALS patients at the higher doses discussed in this article. ALSTDF has no affiliation with any of the manufacturers.
Vitaline:
Vitaline makes the product that was used in the Parkinson’s clinical trial. The product is a wafer that also contains vitamin E and is available at a number of retail outlets. It comes in 100mg and 200mg wafers. This was the version that was shown to slow Parkinson’s disease. It also contains a high dose of Vitamin E. Unfortunately, there is no data on bioavailability for this wafer verses other forms of CoQ10. For more information, visit their website at www.vitaline.com.

Two companies make versions of CoQ10 with some enhanced bioavailability data.

Tishcon:
Tishcon is a leading manufacturer of CoQ10, and several of their products passed review at Consumer Labs mentioned above. A number of bioavailability studies have shown that Tishcon’s gel form of CoQ10 has a 300 percent improved bioavailability by developing a process for making the particles smaller, which improves absorption. Several studies have shown that Tishcon’ s gel form can improve serum CoQ10 levels by 300 percent over normal gels or powders. Please note that none of these studies have been run at the doses used in the Parkinson’s study.

ALS-TDF has arranged for a discount version of CoQ10 from Tishcon.
Please read below for contact information.

Discounted CoQ10 for ALS Patients CoQ10 is available from many manufactures and discount versions can be found in a number of websites and stores.

Because of Tishcon’s bioavailability data, and because they supply a liquid form of CoQ10, ALS-TDF talked with Tishcon about providing a CoQ10 at reduced cost to ALS patients. Tishcon has generously agreed to provide their CoQ10 at reduced costs to ALS
patients due to the significant costs associated with using CoQ10 at higher doses.

ALSTDF has no affiliation with this company, and is not endorsing Tishcon or any other company mentioned in this article.

To qualify for this discount, patients should contact Epic4Health (a
Tischcon distributor) at 1-800-866-0978.
Be sure to reference ALS-TDF to qualify for their discounted rates. For more information on Tishcon and Epic4Health,
please visit www.epic4health.com.
Tishcon Discount Products: Two products qualify for this discount program:

The first is a liquid form of CoQ10 that is not available commercially, and is a concentrated form used in their tablets that can be used in feeding tubes. The density is 1000mg/ ounce and it comes in a 16 oz. bottle. The product code is: Liq-Nol The cost for ALS patients is $85/bottle (versus $159/bottle at regular price).

The second is a 100mg soft gel tablet.
The product code is: Q-Gel Mega 100 and comes in either a 180 count or 1000 count jar. The cost for ALS patients is $100 for 180 count jar and $500 for 1000 count jar.

Mary Beth Parks, RN
Patient Resource Specialist
mparks@als.net
617-441-7250
Go to Top of Page

jmccarty

816 Posts

Posted - 12/20/2006 : 13:18:27 Show Profile Email Poster Reply with Quote
TDF has done a study in mice with CoQ10 and found no indication of efficacy - the data can be seen by following the links on our web page - See:
http://www.als.net/research/treatments/treatmentDetail.asp?treatmentID=172
http://www.als.net/research/studies/animalStudyDetail.asp?studyType=internal&studyID=44
http://www.als.net/research/studies/graphs/50_KM_B.gif

In addition, it has been the subject of human clinical trial investigation but the only result that I am aware to date is that it is tolerated (i.e. more or less safe) at fairly high doses. See:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16344537&query_hl=4&itool=pubmed_docsum

Tolerance of high-dose (3,000 mg/day) coenzyme Q10 in ALS.

Ferrante KL, Shefner J, Zhang H, Betensky R, O'Brien M, Yu H, Fantasia M, Taft J, Beal MF, Traynor B, Newhall K, Donofrio P, Caress J, Ashburn C, Freiberg B, O'Neill C, Paladenech C, Walker T, Pestronk A, Abrams B, Florence J, Renna R, Schierbecker J, Malkus B, Cudkowicz M.
Neurology Clinical Trials Unit, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA. kimberly.ferrante@umassmed.edu
An open-label dose-escalation trial was performed to assess the safety and tolerability of high doses of coenzyme Q10 (CoQ10) in ALS. CoQ10, a cofactor in mitochondrial electron transfer, may improve the mitochondrial dysfunction in ALS. In this study, CoQ10 was safe and well tolerated in 31 subjects treated with doses as high as 3,000 mg/day for 8 months.
PMID: 16344537 [PubMed - indexed for MEDLINE]


John McCarty, PhD
Treatment Investigator,
ALS Therapy Development Foundation

[tidalpool]

Paula, my bipap (with humidifer) works well, you just need to either use a mask that covers your mouth, or make sure your mouth stays closed.......that seems to prevent the dry mouth syndrome with me......tidalpool