SLEEPLESSNESS

I'M WRITING THIS FOR MY HUSBAND WHO AT THIS POINT CAN'T SEEM TO BE ABLE TO DO ANYTHING. HE SPENDS HIS TIME TRYING TO SLEEP ON THE FLOOR. DOESN'T WORK. HE HASN'T REALLY SLEPT IN 4 DAYS. LITTLE CAT NAPS, AND I DO MEAN LITTLE, (MAYBE 15 MINUTES EVERY SIX HOURS). HE HAS LOST SO MUCH WEIGHT AND CAN'T SEEM TO STOP MOVING. THAT WASN'T HIS PROBLEM IN THE BEGINING. HE KEPT FREEZING. HE GOES NO WHERE EXCEPT THE DOCTORS. HE'S HAD BD SURGERY ON BOTH SIDES. WE HAVE TO GO TO BIRMINGHAM, AL TO SEE THE DOCTOR THERE. IT TAKES ABOUT 4 HOURS FROM WHERE WE LIVE. SO WE HAVEN'T BEEN IN ABOUT A YEAR. HE CAN'T SEEM TO MAKE IT. THEY ONLY ADJUST THE STIMULATOR AND BY THE TIME HE LEAVES THE CLINIC HE'S AS BAD AS WHEN HE GOT THERE. THE DOCTOR DID SAY THAT DANIEL WAS ONE OF THE WORSE CASES HE HAD SEEM FOR SOMEONE WITHOUT TAKING MEDS. WHICH NOW THEY SEEM TO WEAR OFF EVERY 30 OR 45 MINUTES. HE USE TO HAVE TO TAKE TO TAKE THEM EVERY 1 1/2 TO 2 HOURS. WE JUST WANTED TO KNOW IF ANYONE ELSE HAS THESE PROBLEMS.

22 Replies

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  • I am very sorry to hear about your situation which seems very extreme and difficult. The only advice I can give you is that you need to seek help from healthcare. By the sound of it your husband seems undermedicated but that is not something that can be addressed without a doctor meeting your husband.

    I wish you all the best

    Sara

  • You need to get him to a neurologist ASAP. He is definitely undermedicated. As for the DBS surgery, he needs multiple adjustments - is there anyway you could stay in Birmaingham? The hospital must have a PD support group where you could find someone to stay with while he meets with the programmer. I had DBS and it took them a year to find the right adjustment. How old is your husband?

  • HE HAS A DOCTOR WHERE WE LIVE. GETTING TO SEE HER IN A TIMELY MANNER IS SOMETHING ELSE. HE HAD TO MISS HIS LAST ONE 2 WEEKS AGO, GOT ANOTHER FOR JANUARY 23. WILL BE CHECKING TO SEE IF ANYONE CANCELLS. I NEVER THOUGHT HE WOULD BE UNDERMEDICATED. THE NEURO ONLY WANTED HIM TO TAKE 1 1/2 EVERY 3 HOURS. HE COULDN'T DO THAT. DANIEL'S 50 YEARS OLD. HE WAS TOLD HE HAD IT SINCE HE WAS 42. HE HAD THE DBS FOR 3 YEARS NOW, GOING BACK TWICE A YEAR. AT LEAST UNTIL ABOUT 10 MONTHS AGO. AND REALLY BEFORE WHEN HE WAS ADJUSTED, WE HADN'T LEFT THE OFFICE BEFORE HE WAS THE SAME AS WHEN HE GOT THERE. THE DOCTOR AND NURSES SEEM TO NOT NOTICE. YEA.

    DANIEL DOES SEEM TO BE A UNIQUE CASE. BUT THAT DOESN'T HELP. I FEEL SO SORRY FOR HIM. BUT THERE ARE TIMES I HAVE TO ADJUST MYSELF SO THAT I WON'T GET ANGRY. NOT AT HIM, BUT OUR SITUATION. WE REALLY NEED A SUPPORT GROUP HERE, BUT I DON'T THINK HE'D BE ABLE TO MAKE IT. IT'S ONLY GOTTEN THIS BAD ABOUT 2 WEEKS AGO. SIMILAR, BUT NOT THIS BAD. USUALLY HE CAN WALK WITH THE WALKER FOR A LIMITED TIME BEFORE HE CRAWLS ON THE FLOOR OR JUST LAYS NOW. IT'S HARD ON OUR BOYS ALSO. WHO ARE 13 AND 15.

  • Suggestion: Make sure that the doctor he is seeing is a movement disorder specialist and that the doctor has a really talented DBS programmer to refer you to.

  • PS: ask the doctor if your hubby might be a good or bad candidate for being in charge of his own stim. Some of us are, some are not. My doc is working on this with one other and myself, because we both seem to have a fairly decent handle on the unit and we both live so far away. They can actually pre-program the unit to work within certain parameters. No replacemen for a really talented programmer, but you sound so desparate it might be worth inquiring about. Also DO NOT miss any appts if at all humanly possible. IT CAN cause problems such as you describe to wait too long between adjustments!

  • Wow, I have not had DBS, but I have crawled on the floor to get from one place to another without falling...I have only been that bad twice since diagnosis and medication...

    I feel for both of you. I do not have a significant other so my 16 yr old daughter has found me on the floor when she comes home and I do not have the strength to get myself up. It is good that he has you and even if he cannot express it, I know he is thankful.

    I will agree with the previous comments that he needs to see a physician asap. If you are able to explain to the office just how bad it is, they should be able to work you in. My neurologist has worked me in more than once and he is 2 hrs. away. I think all of us deal with sleep problems whether it is sleeping for days or not being able to sleep, though his issue sounds extreem. Hope this helps, but do call the Dr. office.

  • I had a very bad period about a year ago lasting about 6 months -- almost no night sleep, constant daytime cat-napping, fell asleep driving (no accident, thank God!). I was also hobbling all over the place, clinging to walls and furniture. I had to have a mason jar with me because there was a good chance I'd never make it to the bathroom. Saw my neurologist (made sure I was off-meds when I did, too) and he gave me a massive increase in medication. The result was significant improvements across the board. I don't like taking all these pills, but they did (almost) give me my life back.

  • I know there are times that they have to see you without meds but I would be scared to death to go off of them, I don't ever want to be as sick as I was before I was diagnosed!

  • THANKS FOR THE COMMENTS. IT SEEMS LIKE HE NEED AN INCREASE IN MEDICATION. I HOPE THAT IS THE CASE. HE ALSO HAS TO CARRY AROUND A SMALL URINAL HE GOT FROM THE HOSPITAL. MICHAELOM HE CANNOT BE COMPLETELY OFF MEDS. THAT'S WHEN THE DOCTOR SAID HE WAS THE WORSE CASE HE'D SEEN. HAD TO KEEP GOING TO THE HOSPITAL FOR STIFF NECK PAIN . THE DBS SURGERY TOOK CARE OF THAT PROBLEM. THAT SEEMS TO BE THE ONLY ONE IT TOOK CARE OF, BUT IT WAS THE MOST IMPORTANT ONE. HE HAD SUCH A VERY HARD TIME WITH THE SURGERY BECAUSE AS THOSE WHO HAVE HAD IT KNOWS YOU HAVE TO BE OFF MEDS TO GET IT DONE. ALL THE MEDICAL STAFF FELT EXTREMELY SORRY FOR HIM BUT IT HAD TO BE DONE. WE JUST WISH IT HAD HELPED WITH SOME OTHER THINGS. BUT WE ARE GREATFUL FOR WHAT IT DID TAKE CARE OF. WILL TALK TO HIS NEUROLOGIST HERE IN DOTHAN. THE ONE IN BIRMINGHAM WILL BE CLOSED THE WEEK OF THANKSGIVING.

    THANKS EVERYONE FOR THE COMMENTS. SOMETIMES WE FEEL AS IF WE ARE ALL ALONE. I'M THANKFUL FOR THIS WEB-SITE.

  • My thoughts are with you and your family. I agree. This site is valuable friend to the PD Community.

  • Hi, Just a couple of things I'd like to add to the good advice given above.

    I wonder if you know any other PwP in your area? It sounds as though you may not. There are people within this group who may know how to connect you to a group in your state. It is a great help if you know other people in a similar situation. I also wondered if your Doctor is a movement disorder specialist, which is important, as they specialise in Parkinson. Adjusting meds is always a game, and you have both dbs and meds that sound like you need help with. Take care and keep strong. Best wishes to you both.

  • I too feel for the both of you, but don't despair - it sounds like a bad spell right now. It seems we all go through a period where it suddenly gets much worse until something is adjusted - meds and/or the dbs transmitter. I too went thtough a bad period 3 years ago where the meds were hardly working, sleeping all day, could not function at all. Once you get his meds and transmitter adjusted he will be better. Keep us posted.

  • Lindylanka > I also wondered if your Doctor is a movement disorder specialist, which is important, as they specialise in Parkinson. Adjusting meds is always a game, and you have both dbs and meds that sound like you need help with.

    Yes, that's important advice. I'm on my 3rd neurologist, and I now feel that I'm seeing someone who's really on top of it.

    1. The first one did not have a diagnosis after seeing him for about a year. To be fair, my symptoms were changing frequently during that time, so a diagnosis was hard to do. After the year with no diagnosis, I yielded to pressure from family and friends to switch neurologists.

    2. The second one tried several meds, but I was not showing the benefit he expected, so he referred me to a 3rd one.

    3. The third (and current) one spends full time seeing patients similar to me. The first two see a wider range of neurological patients -- MS, etc. So, they don't have the same depth of knowledge and experience for a case like mine. And it shows. Visits with #3 go at a fast pace -- he's firing questions at me pretty quickly, doing physical test of my stiffness, observing my walk and testing my reflexes. Then he makes appropriate changes to my meds and encourages me to do other things that would help (exercise program, physical therapist). I feel optimistic that we'll continue to make progress on the meds. Now, I need to do my part with the other things.

  • Thanks everyone for your comments. My husband and I will truly follow up on each and everyone of them. We too think this maybe a bad spell, because things have been worse and gotten a little better. We certainly hope so. Will be calling his doctor here each day to see if she can see him sooner. She's new and seems to be good at what she does, although we've only seen her once. she asked all important questions and wanted to get in touch with the doctor in Birmingham to get together and see what has been done and what she wants to do to help. Didn't want to replicate things that the other doctor had done and didn't work. Just have to be able to see here before Jan.

  • you said Daniel has had DBS for about 3 years. My first question would be "Is the battery depleted or not working?" Three years is about the life of most batteries. This is no excuse for the treatment you have been receiving, but doctors (especially those at big research-based facilities) have many calls that turn out to be trivial and not as emergent as as the patient thinks. However, your case seems to be a high priority. You have to get aggressive (we're talking rudely aggressive)! Demand that something be done for Daniel - ask if it could be the battery, and most importantly, ask to speak with someone "in charge," and describe Daniel's condition in great detail. If Daniel sees someone at Kirklin Clinic in Birmingham, call 205-801-8000 NOW! Please let me know if you have no success in getting help.

  • Got an appointment Dec. 15 at 8:30. That's the earliest they we could get. Didn't want it so early, but the alternative was Feb. I intend to get in touch with Stephanie, she has been most helpful in the past. Clinic is tomorrow so we won't here from her until Wednesday, I hope. Usually they close down for the week of Thanksgiving. So we may have to wait til next week. Daniel also keeps dropping his controller. Within the last 3 months he's had it replaced 3 times. The first 3 years were good, but lately he doesn't seem to be able to hold on to much. He doesn't seem to think the battery is out, but what do we know. Will talk to the neuro doctor here to see if she would be able to know. Thanks for your comments. Everyone is so helpful. This site is a life saver. I think mine.

  • Do you have a Webcam? It might be helpful to record what you are seeing and have the MD on the other end viewing it. I heard a report on NPR one day that some doctors are doing this particularly with PD patients who may be some distance away.

    As my doctor had to pound into my head, I will have good days and bad days. This seems to be more than a bad day. I have also had as many as five days that I was totally non-functional and the meds had to be adjusted.

  • so sorry to hear this daniel glad you got the appointment in dec. not sure whether this may help but if we have an early appointment we tend to go the night befire and stay in an hotel but not always possible but if its any conselation i had dbs 4 years ago and are doing fine better now than at the begginning i am on 1 a day ropiniroles amongs other drugs but please dont feel alone as there is always someone here to chat to.

  • I just got this email notice:

    --------------------------------------------------------------

    WebMD News Alert

    Wednesday, November 23, 2011

    FDA Approves

    Middle-of-Night Sleeping Pill

    The FDA has approved Intermezzo, a new sleep medication designed to help those who wake up in the middle of the night and have difficulty returning to sleep. The drug is formulated to absorb rapidly, and to prevent morning grogginess.

    ---------------------------------------------------------------

    From the message, the link text "Details on drug prescription, usage, and side effects" takes you to:

    webmd.com/sleep-disorders/n...

    The message also included links to these sleep topics. I can't dig up the URL for each link now, but you could probably find the articles on the WebMD site without too much trouble. Or, email me at paulLdineen@yahoo.com if you want me to forward the message to you.

    Related WebMD Reading & Resources

    • Sleep Disorders Explained in Pictures

    • Natural Remedies for Sleep

    • How to Set Up a Healthy Sleep Environment

    • Is Restless Legs Syndrome Keeping You Awake at Night?

    • Foods That Rob You of Sleep

    • Sleep Apnea: Symptoms and Treatments

    • What Your Dreams Reveal About You - Take the Quiz

  • ?4 am friday, looking like my body clock is out of sync, went to bed at 11pm last night got to sleep about 1am , if some one had told me about all this crap befor iwouldnot have signed up for this Parkinson's lark.

    i know iam am going on about it , but as they say its good to talk,

    shaking started as soon as i woke up , tryed to make a cup of tea that was a laugh, spilt the boliling water over the floor , droped the mike also , so might have to go out and nick a pint if i could only walk with out falling, got this wee card i haveto carry to let the peeps know iam not drunk, still better to be half full than half empty.

    more later on my journey wit PD

  • Daniel's DBS is, admittedly, a complicating factor and I have no experience with it, but I have to raise my eyebrows when I hear PWP talking about how weak they are. Weakness is not a symptom of PD. The Three 's are Stiff, Slow, and Shakey. Anything else (in theory) is from a secondary source such as med side effects, life situations, infections, etc. Weakness interests me particularly because of my own experiences where I have found myself in fetal position on the floor unable to even crawl. One thing that is of particular importance because it is so easy and has a high potential payoff is the loss of water soluble vitamins and minerals via our bladders. The B's, C, Zinc, Potassium, Magnesium are all flushed away and must be replaced every day. If not then our muscles and nerves are affected. And sinemet makes it even worse.

  • Thanks again for all the comments. Right now Daniel is asleep, and has been for most of the night. Woke only once. This is truly a miracle. Can't let the boys or dog keep up any noise. Thanks everyone.

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