My Neuro is sending me to a Sleep Specialist
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January 14, 2009 at 4:22 pm
Hi all,
As mentioned in past postings, unfortunately I am in the 5% group where the normal protocol of treatments for CIDP did not work. I have been on a
high-dose chemotherapy (Cyclophosphamide at 2000mg), for 14months, of which October was my last dose for the winter, as they said they had to stop it for the winter to give my bone marrow a break. While on the chemo, it was basically keeping me going–no better but no worse. The CIDP had hit my autonomic system, and knocked off the nerves controlling various organs.October, even though I was still on the chemo for my last dose for the winter, I started feeling and getting weaker. Up to that point, I was able to walk short distances, and have an electric chair for long distances.
Now, I am falling alot, especially in the morning. I cannot feel my legs in bed in the morning, but out of habit just go to get up like normal and forget, and the instant I go to stand up, I fall to the floor.
But now also, GREAT fatigue is setting in. I am now sleeping 10 to 16 hours per day, depending on how good or bad my day is. My sleep pattern is now all mixed up because I sleep so much. It seems I can stay awake for about 5 to 6 hours, then get very weak and fatigued, then must go to bed and sleep.
Many times I am up in the middle of the night, as it goes 5hours awake, 5hours of sleep, etc, etc.
So, yesterday I saw my neuro, and told him what’s going on. He still does not want to go back on the chemo yet, as he said if on it for so long without a break can kill a person. So, he wants me to go and see a Sleep Specialist.
When I questioned him on what is the intent of this, he has in the back of his mind that perhaps going on “speed”, (I am just remembering from the days of my hippy youth the name of speed for the drug, and do not know what the actual drug name is), during the time when the fatigue sets in, might be a way of combatting it. Okay-so I said anything is worth trying, and they are trying now to set it all up.This may be very interesting. To me, it sounds like a possible way of forcing the body away from the fatigue.
HAS ANYONE HERE EVER TRY THIS? HAS ANYONE HERE EVER GONE TO A SLEEP SPECIALIST?
I am very curious about this, and am wondering if this will work. My neuro told me he would prefer to have a sleep specialist take care of this in the planning how it will work, as well as back up meds for the opposite of that, when the body will definitely need it’s rest, as my neuro put it, that perhaps the use of GHB.
Am fielding posts from others on this, and will keep you up to date on what happens with me.
KEDASO -
January 14, 2009 at 5:48 pm
Kedaso,
I am so sorry you are going through all of this. Could it be possible to try something else? Cell Cept or Imuron and ivig? I wish I could help.
Dawn Kevies mom -
January 14, 2009 at 7:36 pm
I had that same type of pattern back in the summer time. But I would go for 3 days and could not sleep then I would nod off and wake up and nod off again to wake up. It was horrible and the fatigue issue was a nightmare. I too saw a sleep specialist. But they really did not find to much. Just noticed that my sleep was being disrupted from something other than sleep apnea.
Mine was caused by a thyroid problem. But they never placed me on speed! I would be scared trying that out. But some people might have no choice. After I got that thyroid surgery, I started sleeping like a lamb and am grateful that issue got solved.
They will do a sleep study on you first and see what your pattern is. Then after that they will tell you what they can do to help you! You might have sleep apnea now and that is what is causing your severe fatigue. Good luck on the sleep study. Hope they can help you feel better! And I hate you are having problems getting that CIDP under control. Hope they can get you feeling better soon! Hugs
Linda H -
January 15, 2009 at 12:16 am
I think amphatemines are what we used to call speed in the old days. I remember back in college the girls who lived upstairs used to take that to lose weight & they would run up & down the stairs continuously. My opinion is that your neuro is taking the wrong approach.
Trying to keep you awake when the body is exhausted (I call it “hitting the brick wall’) is very counterproductive to CIDP. You are tired because your nerves/body is worn out; it needs sleep to rejuvenate. I think it would be better to take something to make sure that you get at least 8-10 hours of uninterrupted sleep, thus allowing the body to rejuvenate. Maybe trying Ambien, Lunesta, or even Xanax at bedtime might give you the sleep pattern you need. My opinion, stay away from the amphatemines if you have CIDP!
Pam -
January 15, 2009 at 6:12 am
Kedaso,
My neuro had me try Provigil – likely what he is talking about having you try – as a way to combat the extreme fatigue. There are pluses and minuses to it. For the most part I agree with Pam that speeding things up isn’t necessarily a good thing with CIDP – but there are days when I can take it and it doesn’t crush me into a ball of tin foil. On the other hand, I took 1/4 of a pill this past Sunday so I could get some laundry done and since it was the end of my treatment cycle I was already tired and while the provigil enabled me to do all this stuff on Sunday I’ve been paying the price since then. I kind of think of it like a loan shark – you can borrow the energy from the future if you either have some in reserve or can rest immediately afterwards to pay it back – otherwise you will pay with interest. I end up taking it about once a month and 1/4 of the dose prescribed – however the good thing is that overall… over the past six months or so we’ve been messing with it… I have more energy than I did and don’t need the extra boost anymore. It’s like it turned on a switch or something that allows me “recoverability” (a term my husband and I coined to describe being able to do things but more importantly being able to recover from doing things in less than a day.)That’s the good part news, it does seem to have helped long term, but the bad news is that with your autonomic involvement I’m not sure you should be taking it. It IS a derivative of amphetamines and as such can raise your heart rate and blood pressure. I do not notice it with 1/4 of a pill but if I take 1/2 or god forbid an entire pill… well just call the ambulance because my heart will already be at the hospital by the time we get there.
As for the sleep study/specialist – my husband went through this whole routine this summer and it’s probably the best thing he has ever done in his life aside from marrying me. He now has a CPAP machine and sleeps like a baby, wakes up bouncing off the walls too. The sleep specialist is a neurologist who has … um… specialized in sleep disorders. I think getting the sleep study is a really good idea for you whether they try provigil or not there may be other issues there compounding your fatigue. For example, I was surprised to learn through the sleep study that my husband was waking up on average of 57 times an hour – imagine if that was happening to you… your body would not be getting the essential rest it needs to heal and recuperate in that case. So it’s worth getting the study done, I’ve thought about asking for it myself, and perhaps your fatigue is caused by something a CPAP would help with. Wouldn’t that be great if you could help it without resorting to drugs!
Good luck Kedaso, I sympathize with the fatigue, I’ve been feeling squashed by a steam roller for the last two weeks which is why I finally resorted to taking 1/4 of a provigil… in retrospect it was a bad idea, I’m just recovering today.
Julie
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January 15, 2009 at 9:53 am
If you decide to look at other alternatives as to why you may be fatigued, you could look into getting some of your hormones checked.
A few to check out would be:
Sex hormones (DHEA, estrogen, progesterone, estradial, etc)
Thyroid hormones (free T3, Free T4)
Adrenal hormone cortisol (test morning and evening at minimal, preferably morning, noon, afternoon and evening).These are just a few common ones to check out, there are others. Even vitamin imbalances can cause fatigue.
Hormone imbalances are often the main cause for fatigue, especially in individuals with autoimmune diseases.
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January 15, 2009 at 10:20 am
KEDASO,
Good luck with the sleep specialist. let us know how it works out. I use a CPAP and also use Provigil with mixed results. So I’m very interested is the sleep specialist can help.Good luck and God be with you.
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January 16, 2009 at 1:25 am
I had the 24 hour sleep test and found out I just REM dream during the day. So I stay up late and slept in. Need lots of sleep that never fully restores me. Just doesn’t. I also wake up all during the night.Tried to change my sleep schedule by lots of different approaches-no luck.
My neuro many many times gave me samples/prescriptions for Ritalin, Provigil, Scattera and what ever. Never tried it as if my body that tired I’m not using artificial means for fake energy. One lady I know with MS used 1/4 of children strength Ritalin pill for extra energy. With my past history of the worst drug effects on records I’m scared silly to try an amphetamine based drug.I took Ambien CR for 3 days and then started laughing uncontrollably in a restaurant. Had to be driven home as I was slap drunk from the Ambien.Get the 24 hour sleep test.
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January 17, 2009 at 4:53 pm
I, like you and many others struggle with the sleep thing. After the sleep study, we tried the CPAP, provigil along with a few other drugs with mixed or no results. Finally went old school and started taking Halcion .025 mg and sleep like a baby nearly every night. On the day I get prednisone before Gamunex, I take 1 1/2 pills about an hour before bed and am gone for at least 7-8 hours. The loss of energy from lack of sleep just kills, so I am resigned to use what is working for me. Hope your study helps them find a solution for you. If they can get you to a regular sleep pattern it may help your energy level.Good luck.
Fred -
January 17, 2009 at 7:53 pm
I know when my thyroid was giving me a fit I was not sleeping any at all. Now they have me on meds that help. It sure feels good to sleep again. Something I thought was never going to happen again. You will see a big difference when you get a few days of sleep. Hope they get you straightened out a sleeping again soon. But the right kind of sleep! Hugs
Linda H -
January 19, 2009 at 4:14 pm
Hi K,
Just wanted to put my two cents in. I too am resistant to most treatments and am on chemo. Was doing good starting this past May and last month started feeling trouble brewing again. The sleep thing is so frustrating. I had a sleep study done and have been trying to get it under control for the past year. The sleep study revealed sleep apnea, some restless leg, and the need for intervention. Tried CPAP with no success because I could not sleep with the mask.(I tried several). I have been sent to a specialist for a mouth appliance that pulls my jaw forward which was helping until I got severe TMJ. Now they are trying to modify that apparatus but it is not working so I am back to square one. All I can say is the sleep study is worth it as it does give you good information and if you find successful treatment it’s great. Good luck and keep us posted. I am always interested in how you’re doing.
Linda -
May 12, 2009 at 5:36 pm
Hi all,
I haven’t posted for a while, so I thought I would update this as to the results.
I saw the sleep specialist a few months ago. She is a Neurologist specializing in sleep disorders. She knew full well of CIDP, and understood why my regular neuro sent me to her for the severe fatigue.
First, they did Oximetry on my, and showed my O2 sat. down as low as 80, (normal for this is 92 or above). They had blood gases drawn, and again showed my O2 sat at 84. She sent those results over to my regular Pulmonologist, of whom I saw a month ago, and I am now on Oxygen 24/7.
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But back to the Sleep Specialist…She wanted to experiment with what might work. First, she had me try Provigil, at varying doses. Didn’t work.
So, amphetimine time–she had me try Ritalin.
I have to tell you, this helps alot. She had me start with 5mg two or three times a day, working upward until I found the dose that might help.
I DID find the right dose: I take 10mg when I first get up, (between 4am-
5am), then again another 10mg between 10am-11am. This gets me through the afternoon without having to go to bed. It was getting bad there for a spell, that I was going to bed/sleep at 1pm, back up 7pm, to sleep again at 11pm, then back up at 5am–sleeping twice daily.
Now, I can make it to 4pm-5pm, eat dinner, then make it to 8pm-9pm.
And if I am going out in the evening like to a restaurant or something, I take a dose of 20mg in the afternoon. She wrote the script that I can take up to 40mg per day.
Since I am in a slow progression of getting worse with the CIDP, who cares if I get addicted to this–One of my doctors pushed me to get my Advance Directive done two months ago, as he feels something is going to happen within this coming year–yeah, I know, a feeding tube and trach/respirator is not too far off in my future, as explained by my doctors.
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So, for others experiencing SEVERE fatigue from the CIDP, this might help some of you. Sometimes it catches up with me, and I have to take a whole day out for mostly bedrest, even as I take the Ritalin. But most days of the week, this helps me greatly.
KEDASO
(Ken) -
May 12, 2009 at 6:37 pm
Hi Ken I take Concerta the 12 hour version of Ritalin. I take it because I have ADHD. I take 72 mg in the morning suppose to last 12 hours and expensive if you don’t have a drug plan the equivalent if your taking Ritalin is 60 mg maximum a day. So don’t worry about taking Ritalin you should be safe up to 6o mg a day. I still get tired with Concerta but image if I didn’t have Concerta.
I find it lasts me 8 hours at the most
Tomorrow I start a new antidepressant and I hope that wakes me up and gives me energy. I got a 2 weeks supply and I see my DR in 2 weeks so I hope it works. I can’t imagine going back to work next month it’s going to be hard especially now I also have V B12 problems.Ken is there anyway they could put you in a hyperbaric chamber? A teenager I met from another forum had many many problems many autoimmune disease and her oxygen was around 72 and they put her in a hyperbaric chamber and it helped her. She needed more then 1 treatment of course but I wonder if something like that could help you?
I am sorry you are one in the 5 % who got this rare CIDP
Sue
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May 12, 2009 at 9:10 pm
My doctor is trying he DHEA on me for my fatigue and I hope it works. The sleeping feels good and I do sleep good now but want to stay asleep. So GHEA it is for me,
But glad they found something that helps you some! Wishing you great luck!
Linda H -
May 18, 2009 at 12:39 pm
Ken,
I am glad you went through with the sleep study. I also use a CPAP for sleep apnea. It didn’t matter how much I “slept” because I wasn’t getting any deep restful sleep because of stop breathing. Anyway that is behind me and I can d
eal with the mask thing.I am also glad they found out about the O2 def.. Not enough O2 will wear you out by itself.
I suffer from fatigue, I need until 10:30 or 11:00 to get “going” and then peter out by 6 or 7. If I push too early, or make it up too late, the price is paid the next day (or 2).
I am sorry to hear that you have progressed to where you have. I too am slowly progressive where conventional treatments have not been completely successful. I just get a little worse each year, a lot of pain, and so forth.
Take care, I’ll be thinking of you.
Dick S
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