Fatigue and the role of sleep apnea

[mbeiermd@hotmail.com]

My diagnosis of MS was 1996 and it continues to be RRMS, I think in part due to my using disease modifying drugs since 1999. I have had TERRIBLE fatigue and used Provigil without much help. Lately, it got so disabling that I struggled every morning to get up,
waking with headaches, developing a cough. I read that MS increases the incidence of sleep apnea and begged/demanded an overnight sleep oximeter. To make the story short (our health care system is NOT user friendly), I have sleep apnea. It is probably because of the MS and using Cpap has CHANGED my life and I'm SO much better!!! If you have fatigue - 35-40% of MS patients have sleep apnea - check into the possibility. Signs are snoring at night, episodes of no breathing, waking with a headache, tired. My symptoms of chest pain and cough are the result of untreated sleep apnea for years. It can result in heart and lung abnormalities and neither my neurologist or internist thought of it. It took personal advocacy to diagnose and treat.

[Suebee]

Good job on advocating for yourself! I know it isn't easy. So glad you got a correct diagnosis too. Did you need to see a pulmonologist to get tested ? My PT told me my exhale was weak when I blew into a breathalater. I followed up with pulmunolgist and after many tests he told me that i didn't have obstructive disease and said he didn't understand my PT's observation. He didn't suggest a sleep study. But Since MS, my blood work always shows above normal high co2, but my internist and neuros always shrug and say no big deal. I wonder why it's hard for MS patients to get diagnosis /treatment for respiratory issues caused by muscle weakness, incoordination? I will ask for sleep apnea test but which specialist should I approach about it? Does anyone know about causes of higher than normal co2 and ways to treat?

[myoak]

May be off the sleep topic slightly

Having been involved with MS issues for the last 33 years I’ve seen plenty of controversy surrounding various treatments. One called hyperbolic oxygen therapy (HBO) received a lot of attention a few years back. Pro and Con arguments became heated, charges of quackery were made.

I quote this from the UK MS Society,
http://www.mssociety.org.uk/what-is-...-therapies/hbo

“A Cochrane review from 2011 reviewed the scientific evidence on HBO as a treatment for MS. It identified nine randomised, controlled trials of HBO considered to be of reasonable/high quality. But only two of these nine trials produced results in favour of HBO. The other 7 trials found no clear positive effects for people with MS.
The majority of the controlled trials could not show beneficial effects of HBO in people with MS. The authors of the report concluded that there was "no consistent evidence to confirm a beneficial effect of hyperbaric oxygen therapy for the treatment of multiple sclerosis". They also stated that they do not believe routine use of HBO therapy for the treatment of MS is justified.”

They state no “consistent” evidence. Two of the seven trials produced clear favorable results the other 5 produced results which were not “clear”; they fell short of statistical significance demonstrating benefit.

The Cochrane group also said they don’t believe “routine” use of HBO is justified. What about occasional use? During a flare-up, for example?

From review of 7 scientific trials considered to be of reasonable/high quality by the Cochrane group we see people did benefit from HBO but the evidence was not strong enough to justify categorizing it as a treatment for MS.

Even possible benefits in MS get my attention. In fact, this study in mice helped prompt our action… “Neurological deficits caused by tissue hypoxia in neuroinflammatory disease” http://www.ncbi.nlm.nih.gov/pubmed/24038279
We don’t have a HBO chamber but we did buy an oxygen concentrator. I am not recommending anyone else do so!!!! You may be wasting your money. We bought one from the many available on Craig’s list after someone counseled us not to buy from a household where someone smokes because you can’t rid the machine of the smell.

My wife (with MS) uses the machine several times a week to feel better and hopefully help MS from getting worse. This is strictly one person’s testimony, nothing more. When she feels especially fatigued she never fails utilizing the concentrator and usually seems to improve; often stating, “I feel better now”.

It’s just something we have done for the past 3 years which seems to be a benefit and has no down side other than cost of the machine. The machine filter can be replaced pretty easily but they last a long time, too, and the tubing is inexpensive, cannulas cost a couple dollars. The humidifier is nothing more than a small removable bottle where a cup or so of distilled water is added. Some people just use tap water and change it with each use. Some people don’t use the humidifier bottle at all, not all machines come with one. But they are inexpensive to add, if desired.

HBO chambers used by MSers are far more common in the UK than in the US, it appears. Obviously, some people get, or believe they get benefit from HBO or a concentrator. Don’t expect a cure for MS or a sudden change in condition from using either. Do they help? I believe some people are helped but that is only my opinion.

[Suebee]

Oxygen therapy and exploratory breathing exercises

Myoak, I agree with you, there is a lot of research showing that oxygen therapy can improve healing process, especially with stroke victims. It seems to not be a big leap that it may help MS patients with active disease. I briefly investigated this for myself many yrs ago and found it was very expensive to get treatment sessions. I opted instead to follow guidelines of a published study which used ginkgo bilbo for 6 months with stroke victims and found it increased blood flow and oxygen and healing. With re to buying a personal one, i am glad it works for your wife. We have to be zealous self advocates and think out of the box. I feared that I would negatively impact my expiratory strength if I used one. I clearly can not push the little ball up high on the breathaltor cylinder and I have low endurance for the breathing exercise my PT suggested to increase my expiratory strength. So I hoped the pulmonologist would give me ideas. Instead, the testing baseline for expiratory strength appeared to be based on the average of the best exhale out of three and not on repeated exhales or over a few hours of activity. I would think that would be a better measure of expiratory strength for ms patients who get muscle fatigue and in coordination. There are quite a few studies which show expiratory muscle training is beneficial to ms patients. But none of my truly talented neuros, internists, or pulmon seem aware of this option. Here is one link http://www.ncbi.nlm.nih.gov/m/pubmed/10857518/. Suebee

[Suebee]

Also, there seems to be a prevalent incorrect assumption that breathing difficulties only affect severely disabled msers. This seems to have been an obstacle for me. There are journal articles explaining it can affect anyone with ms. Here is a link to an overview, for example, which lists in the footnotes several articles on this. With re to my Co2 levels, every time I get a managed health care printout of my recent labs re Hdl LDL weight etc it also will have a paragraph informing me that my co2 levels are too high and I should discuss with dr. But when I diligently follow up, no one finds that issue to be issue. I find that odd. If not an issue, don't flag on health labs printout. Sorry, a little venting. http://www.neuropt.org/docs/default-...y.pdf?sfvrsn=2

[LaurenK]

Suebee, my husband has sleep apnea (not MS related) and had to see a pulmunolgist for the testing and prescription for the cpap machine. After trying several different masks, he has found nasal pillows to be the most comfortable to wear all night, all the other masks irritated his skin. Hope that helps!

[Suebee]

Thanks for info Laurenk I appreciate it!