Sleep Apnea, Crohn's, Memory Loss (and Brain Damage?) and Other Stuff...

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meowese
Regular Member


Date Joined Jan 2008
Total Posts : 121
   Posted 2/20/2009 1:06 PM (GMT -7)   
I've been posting on this board on and off for a bit now. I have Crohn's disease, ulcers, frequent terrible heart burn, severe nausea, migraines, joint pain, muscle tenderness, memory loss, and sometimes other cognitive issues.

I saw a bunch of doctors and nothing came of it. I finally pushed for a sleep study after complaining for two and a half years that I am always TIRED, that I am losing some words, and have a bad memory suddenly.

It turns out I don't get any REM sleep, I wake up frequently in the night, I snore (something no one has EVER told me), and apnea. I have two periventricular white matter lesions on my brain which have been blamed on migraines. Now I'm sitting here sort of freaking out that I have brain damage?

Does anyone know anything about apnea and sleep disorders and how they relate to Crohn's or my other symptoms? Do I just have to accept I have a bad memory now? I'm sad.

I also have a newish symptom. Scratching my body anywhere feels like someone PUNCHED me. Like light pressure brings intense pain that lasts for a minute or two.

I'm only 25 yrs old. I feel like crap most of the time and it's making me depressed.

Sincerely,
Meowese.
Crohn's (dx 2006), severe migraines, Seborrheic Derm., Hemolytic Uremic Syndrome (1994), ulcers/GERD and possibly Fibromyalgia? Medications: Nexium, Pentasa, Cymbalta, Xysal, Yaz, Percocet or Vicodin as needed, Flintstone Vitamins (my favorite part!), vitamin D once weekly.

Post Edited (meowese) : 2/20/2009 1:09:55 PM (GMT-7)


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 2/20/2009 5:00 PM (GMT -7)   
yeah This week's New Scientist magazine ( www. newscientist.com) has an article on the theory that sleep problems may cause neuro-psychiatric symptoms, rather than be a cause of them. It is an idea whose time has evidently come; there is also recent evidence that many diagnoses of ADHD may be related to sleep apnoea. Lack of REM sleep is the particular culprit.
Sorry, but this is going to be a bit of an epic screed.
Sleep apnoea, as you will now appreciate, is now a well recognised cause of all sorts of problems, from mood disorders to heart disease and immunological impairment. The good news ( eyesif I remember correctly, which I think I do) is that the situation, when apnoea is cured, tends to improve dramatically.
My problems, with the exception of sleep apnoea, migraines and the sensitive skin thing, have been almost exactly yours in the past (at the same age, starting after a bout of viral pneumonia), and at that time disordered, unrefreshing sleep was sheer torment to me.
Even now when ill with chronic fatigue I will sometimes enter phases where I must get extra sleep, and should I be wakened before "the last hour" then - regardless of how many hours I've had - I still feel like I haven't slept. The last hour, or at least a chunk at the end of my sleep cycle before I wake up naturally, is the all important bit, for some reason. That's what gets me up feeling clear headed and physically able, as opposed to myotonally wrecked and brain befogged.
I cannot give you any advice on migraines, except to say that I have heard a nutritional therapist claim that virtually every woman she ever treated with migraines had a dysfunctional balance of magnesium, being severely lacking in that element. Given the wonders she worked on my health problems, I am inclined to think that she knew her stuff. Certainly she never put a foot wrong on biochemistry that I knew of.
The memory loss I am working on. It is a constant source of worry to me, it shapes my life at every step, and it may yet render me homeless as it is not really recognised as a problem in my assessment for benefits, due to the fact that my verbal fluency is so obvious. nonoDuh, you're a doctor, don't you appreciate that there are other types of memory other than that for words ? ! eyes In my case the types of memory loss that are worst are short term memory loss, (what I was going to do, what the start of my sentence was)....now where was, ah yes, wink what I think is prioperceptive memory - remembering where I put things, being conscious of what I am doing with things (now where did I put that ?) and last but certainly not least, the killer, declarative memory - I can comprehend what a doctor says to me, however complicated he cares to make it, but I will not remember it unless he writes it down. Facts, figures, yes/no decisions - I remember the framework of ideas around them, I recognise them , but do not recall the facts themselves, unless the situation points to the answer. More recently, within the last couple of years, just past the age of forty, my ability to do crossword puzzles has dropped quite dramatically, at the same time as I started on SSRIs which adversely affected my cognition.
confused How typical any of these specific forms of memory loss are, or how common the particular mix is, I don't know meowese, although I know from recent posts that "brain fog" (a term borrowed from the fibromyalgia forum) is not uncommon amongst Crohnies.
It is noticeable that my cognition is adversely affected particularly by medications, aural or visual distractions, and last but not least, season. Wintertime is when my cognitive abilities are most inclined to dip to a severe low, although they can also soar to heights as well. I am very inclined to think that the ability to reason and concentrate on a subject, for myself at least, is almost like a computer; it is intimately bound up with the amount of memory available to me. Poor short term memory - don't read anything more complicated than the local newspaper. Starting with something easy to read though can eventually get me into "the zone" where my powers of concentration, and hence comprehension, become formidable.
Your description of sensitive skin rings a loud bell. I have read of this elsewhere in a text book in the distant past, and much more recently on one of the HW forums, I am quite sure. Bell's Palsy, or something associated with that ? Fibromyalgia ? Lupus ? Lyme's ? Try posting on some other forums, I think you may get some useful feedback. Sorry I cannot be more specific, but it does ring a very loud bell.
As far as brain damage is concerned, don't freak out. I don't mean to make light of it, God knows I am sure I have damage to my own hippocampus myself and I know how disheartened that makes me feel. But cognitive impairment is often repaired by the brain itself rewiring around damaged areas, and in some cases this may even lead to extra or unique abilities to manifest themselves as the extra neuronal connections change the modus operandi. Speaking as a layman who has been reading about the science of neurology for twenty-odd years, it is amazing how many people have some sort of neurological damage. Often times many things we think of as character traits may be as a result of a change in brain function; for example body dysmorphism leading to an obsession with food or bodybuilding. Often they can even attribute it to a specific time period, event or illness; viruses causing inflammation in the brain seem to be something rarely noticed medically at the time, only long after. But the thing so many people say, is, "But it got a lot better after, it just took a while."
There are no guarantees, but since I came off my SSRIs, I am back to six minutes for the crossword. yeah And I have high hopes with B12, too, lack of which I have recently found is implicated in sleep disorders (it regulates circadian rhythms) and low energy levels.
Hope this helps ! smilewinkgrin

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 2/20/2009 5:26 PM (GMT -7)   
Hi Hope they can help you sleep better and what did the DR. say is causing the brain lesions and is there something they can do to help with them. I have some memory issues and I am on B-12 and I seem to be doing better. Lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Missmissy
Regular Member


Date Joined Oct 2006
Total Posts : 237
   Posted 2/21/2009 10:59 AM (GMT -7)   
Hi-I have severe sleep apnea and am being treated with a C-Pap machine to keep me breathing at night. Once I started on that, it changed my life dramatically in about 6 months. No more waking up with headaches, and I actually had some energy for the first time in years. Maybe you are a candidate for this. I would check it out.
Asacol 1200 mg. 3 times daily, Rowasa enema AM & PM,
probiotics, lots of hope and prayers! 52 years old, diagnosed formally 10-06. If it doesn't kill ya, it'll only make you stronger!


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 2/21/2009 6:19 PM (GMT -7)   
Disrupted sleep and the resulting fatigue cause memory problems. If you can use a C-Pap machine, you may find that your memory improves. It won't happen overnight but you should notice a difference.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 2/22/2009 7:40 AM (GMT -7)   
1. Without good qualitity and quanity of sleep (which can effect all the other dx's you have) I would think most people would find it difficult to live a good quality of life, so my suggestion would be to see how improving your sleep might help, be aware it might take a couple of months.
2. With the severity of your crohns issues (the ulcers, heartburn (which can also mess up your sleep), nausua) I wonder if you are coughing as well at night? (it is good to get your heart and lungs checked out just to make sure your functioning well) (plus please get your body vitamen levels checked as well)
3. Please see a neurologist about your migraines and cognitive issues (get a neuropsych eval, if you have not already...sounds like you might have). I wonder between the lack of sleep and the nutrition issues that are associated with crohns is that causing your cognitive issues. Dehydration and inflamation can also cause migraines, there is a vascular effects to the inflammation that is caused by crohns.
As to the brain lesions, I want put emphasis again on you going to see a neurologist (if you have not already), because with one autoimmune disease it makes you a bit more likely to develop other. Do not worry too much, because I developed some lesions from a childhood illness (spinal meningitis) that cause migraines when I get dehydrated (which is really easy to do with crohns).
So I hope (and I think they will) that your cognitive symptoms will ease up once you get the sleep, nutrition, and other physical symptoms taken care of.
4. Unfortunately, pain is rather common with crohns, but like I said be sure you are checked out by a neurologist, Rheumatologist, and pain management doc might help as well, because the kind of exteme sensitivity is unusual. (again we want to be sure you do not have other issues going on and we want to you to live the best quality of life possible)
5. Please do not be offended by this last suggestion and I consider it very important: you might want to think about seeking psychological help, to help you combat the symptoms of your cognitive issues and the symptoms of your depression. They really do help alot, and also be aware it might take a couple of different therapists untill you find one that fits you.

Please don't give up.  You are not alone.


Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 2/22/2009 7:46:08 AM (GMT-7)


AnaSunnyDay
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 7/22/2009 10:17 PM (GMT -7)   
Meowese! I just became a member of this site after reading your post in 2008 about the same lesions. I have them, too and have been told that migraines could cause them, but to me that's just not good enough because the migraines started so suddenly and are why I had an MRI in the first place, so for me the bigger question is what caused the migraines, and my pain, and "brain for" and aphasia and vertigo and confusion which all started suddenly for me in November 2007.

After being daignosed with PVM (periventricular white matter--a.k.a. "spots on your brain"), it seemed that my family doctor and neurologist were only trying to rule out what I could have rather than trying to solve what I do have.

Here's what little I've figured out: MS is a diagnosis of exclusion and after two or more episodes or events, and two or more positive tests (MRI, lumbar puncture, or EVP/Evoked Potential Test), you might be diagnosed with MS.

Your severe pain with light touching sounds like fibromyalgia, the one thing I've been consistently diagnosed with but still doesn't explain all my neurological symptoms.

Eventually, if we live long enough, we will all have some PVM, but too have a lot visible at my age (35) or especially at your age, can be caused by migraines, but then there's the original egg v. chicken conundrum of what caused the migraines.

One of the best explanations of PVM that I found comes from the Chicago Dizziness and Hearing:

http://www.dizziness-and-balance.com/disorders/central/pvm.htm

It cracks me up a bit when he says, "in other words, they slow you down, and make you dumber!" I really sympathize with you about the depression. I was diagnosed with MS and then un-diagnosed base on a clean LP and no second event (which I've now had, but I dread going through all the testing again, to possibly end up answerless still). It's hard to explain to anybody what's wrong without a diagnosis larger than "pain." I have virtually no social life or friends and I haven't even told family that I've had a second "event" because it sort of sounds like I'm just a hypochondriac without a diagnosis.

Fibromyalgia still describes most of your descriptions, but I kind of hate that whereas MS, is a diagnosis of exclusion, FM is sort of a wastebasket diagnosis.

I wish you well! Keep your chin up. Read the PVM article, and maybe you'll find some humor in it. I take Lyrica for FM, and Indomethacine for migraines. both have helped me a lot. I've also found that if I have a really bad flare-up of my FM symptoms, if I do a two day juice fast, most of my symptoms go away. Now if only I had the willpower to add foods back slowly, then maybe I could figure out if food cause my symptoms, but I barely make it to 48 hours because I'm so hungry, and then I grab the first crunchy, sweet and salty snack I can finD

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 7/22/2009 10:48 PM (GMT -7)   
A couple of suggestions. Fatigue and joint pain can be the result of vitamin D deficiency. Optimal levels of vitamin D can't be had by taking the RDA - you would need at least 2000 IU per day for several months to reverse the effects of long term vitamin D deficiency. For more, see: Townsend Letter for Doctors and Patients

Then you might try Culturelle which is a commercial probiotic found in many drug stores. It is the bacteria used in the research described here:
http://jn.nutrition.org/cgi/content/full/134/8/1964
which talks about treating arthritis in rats.

Homeboy
Veteran Member


Date Joined Dec 2005
Total Posts : 637
   Posted 7/23/2009 2:30 PM (GMT -7)   
I have had problems sleeping too. I told my doctor about celexa making me really nauseated, he had me try Remeron. It's working great for me, supposed to help with nausea too, I dunno. It puts me to sleep about one hour after I take it, and I stay asleep. No more missing appointments for me, because I was asleep when it was time to go.

I hope you find something, there are many things out there.
CD dx @ 13 (1987)
Prednisone 20mg every other day
Phenergen PRN
Zantac 150 - Twice Day
Pain Meds
Vitamins


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/23/2009 4:14 PM (GMT -7)   
I'm going to start out w/addressing your Dx of OSA (obstructive sleep apnea). There are some 80+ sleep disorders, OSA being the most prevalent. BUT OSA is not 'just" a sleep disorder - it is an 02 deprivation. Each apnea you experience at night is an obstruction of your airway depriving you of 02. In addition to the apneas one usually also has partial obstructins of the airway called hypopneas and hypopneas also result in reduced 02. To qualify as an apnea or an hypopneas the partial or full obstruction has to result in a designated % drop in 02 for a designated period of time. Usually there are other breathing reducations that don't last long enough or cause deep enough desaturations to be classified as an apnea or an hyopnea which you will also see referred to as RERAs, Respiratory Effort Related Arousals. And UARS, Upper Airway Resistance Syndrome, is now being recognized more and more. All of these are included in the RDI, Respiratory Disturbance Index, and combined are depriving you of a good deal of 02 all night long or whenever you sleep. Your pulse rate increases w/these events.

Think about this: constant 02 desaturations thru out your sleep, increased heart rate w/these events .... your blood carries 02 to all parts of your body. OSA is causing wear and tear on every organ in your body - including reduced blood flow to your intestines, brain, heart, kidneys, etc. Silent reflux is a common accompaniment to OSA. FM has long been known to have a poor sleep component, etc., etc. AND THERE IS NO CURE FOR OSA - there is only treatment. But very effective treatment - the CPAP, Continuous Positive Airway Pressure.

Hopefully, you have NOT had your titration study or at least not been scripted your equipment yet. Because there are bare bone compliance data only CPAPs and there are fully data capable CPAPs and there are fully data capable auto titrating CPAPs (APAPs). Most insurnace do not pay for DME, durable medical equipment, by brand and model, but rather by insurance (HCPCS) code and the HCPCS code for any of the above is e0601. The local DME suppliers usually prefer to provide the bare bone CPAP rather than the more expensive fully data capable CPAPs or even more expensive APAPs. But they are contracted w/the your insurance company at one contracted price for HCPCS code e0601. Do you see where I am going w/this?

Call your insurance company NOW and ask them what local DME CPAP suppliers they are contracted with. Hopefully you will have the option of more than one as that gives you more bargaining/negotiating room to get the equipment you want (w/in reason, of course).

I would recommend the American Sleep Apnea Association's sleep apnea support forum,

http://wwwapneasupport.com

for some reliable information and support and advice from fellow 'apneans'. I frequent the above forum and have found it very helpful.

Personally, I would also request a copy of the doctor's dictated results (1-2 pages each) and the full scored data summary report w/condensed graphs (5+ pages each) from both your in-lab sleep evaluation PSG (polysomnography) and your in-lab CPAP titration PSG as well as the original or at least a copy of your equipment order (script). They are part of your medical records and as such,assuming you are in the USA, you have a LEGAL RIGHT to them under HIPAA.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 7/23/2009 5:18:14 PM (GMT-6)

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