Not Sleeping - Ideas?

Hello, I am new here. Apologies for any spelling errors or anything that doesn't make sense - today is one of those bad days. :-\
A little about my situation: I have been diagnosed with Meniere's (the wonderful tinitus, passing out, eye twitching, numbness in hands/legs/head/face and everything that comes with it) lost 65/80% of the hearing in my right ear and was started on Dyazide which helped somewhat with the dizziness and number of attacks I was having. The Dyazide wasn't working after about 3 months and the idzziness started again.. this is not in the instance of an attack, but regular, daily dizziness. So, my ENT added Valium (taking twice daily) to the Dyazide. The addition of Valium seemed to have worked for about a week and then the dizziness started again but seemed worse than before. So, week two: I'm having sharp pains in the lower portion of my stomach, I am typing/writing/seeing things backwards, my brain feels like complete moosh. Also, I am not tired.. at all. I haven't slept in the past two days (not because i haven't tried!). Due to the lack of sleep, I have been having a minor attack (I'm doing what I can to keep it low - low light, no excess noises, attempting to prevent stress, etc) for two days straight and I'm starting to get a little fearful.
I feel like I'm in a bad episode of That 70's Show while a vaccum cleaner and a machine shop are running inside of my ears.
Has anyone ever experienced this? Being on the same medication or not? I don't feel safe driving or coming to work, but it's hard to keep the insurance to help pay the bills for all of this jazz if I don't. I have contacted my doctor, but was only able to leave a voicemail. I'm really looking for any ideas, responses, thoughts... ???

Thank you all for reading.

 

Welcome to the forum!

Sorry you are having such a rough time. When do you take your meds? maybe changing the time of day will help the sleeping issue. Also I just found out that I have Migraine Associated Vertigo instead of Menieres. I found out that you can have migraines without any headaches and you can have migraines in your stomach also.

Hope your ENT will give you a call back

Hang in there
Tuck

 

Thank you, Tucker (I was just looking at your site ). Normally, I take the Dyazide and Valium in the morning and the seond Vailum at dinner. I was feeling less sleepy a few days ago and thought since I was taking the Valium after I put the kiddo to sleep (around 7:30pm) that maybe taking it earlier would help.. but no such luck since I'm just not sleeping now. I had absolutely no idea you could have migraines in your stomach.. but, I feel a little like the chick from Alien (don't know what's with the tv/movie analogies). I'm kind of curious if my body just doesn't like the Valium.

 

Mook, ask your doc about a "paradoxical reaction" to Valium. This is a benzodiazepine and is supposed to make you sleepy but sometimes can cause this sideeffect (look under side effects here: http://www.medicinenet.com/diazepam/article.htm). If this is your case, your doc can switch you to another drug.

Good luck - I can only imagine what you must be dealing with!

George

 

Hi Mook and welcome -

I can't help much since my symptoms vary slightly. I don't get numbness, daily dizziness or pass out.

I never had a problem with the diuretic or Valium the few times I took it.

I hope your doctor calls back soon. I think it's best to wait and see what he/she has to say.

Good luck and stick around. I've learned so much from this site!

 

Mook- there is something that is really bothering me..... you mentioned you have passed out. This is not typical with Menieres..... there are many times I feel like I was going to pass out because the vertigo was SO severe, but never did I pass out. I did go to the ground twice when I had the drop attacks but never did I pass out. You also mentioned numbness/tingling.... that bothers me too-- as those two symptoms alone can point to a cardiac problem.
This is definitely not saying you don't have Menieres, you clearly have the hearing loss and some other symptoms-- but what we all have to remember is we can have other conditions on top of Menieres..... and that's important to recognize.
If the doctor does not call you back- please call them back and be persistent. This is your health!!
As far as insomnia- I can only give you suggestions my doctor has given me, but I'm the eternal insomniac (so obviously they don't work too well for me). It was suggested that I never work out within 4 hours of going to bed.... as this revs the body up, if you work out- work out earlier in the day. Try drinking a combination of warm milk with honey in it before bed and avoid caffeine completely for at least 4 hours before bed. Try listening to soothing music or reading a book before bedtime....

and Best Wishes!
Di

 

Hi, I am new to this group. I have had severe bilateral Meniere's since 1984. I now have AIED. I go to OSU for treatment. I had a reaction to a med I was taking, so they took me off it and prescribed one to help with the side effects of the first one. Well I ended up with hives all over my body from the second drug. So now my meniere's is out of control. I go Thursday to see what can be done.

The choices are retry the Meniette, try the Meniette with geramycin treatments, or try a new surgery that they are doing in Japan. The US wants to try it to see the results. Half the people will get the treatment the other half a placebo effect. Has any one heard of this treatment where they will redo my shunt and put steriods inside my head with the shunt?

I hope this is making since because getting on a computer now is making me very ill. I have been in the ER 2 weeks in a row for dehydration. I started a new job working from my home and since this has happened I have had to take a leave of absence. Meniere's has a way of creating havoc in my life but it could be worse I guess.

 

Hello Mook and welcome to DizzyLand.

O goodness Mook I do sincerely feel for you as I might sleep from 3-6 hours a night and then suddenly will sleep like 9 hours or better.

Like you its not from the lack of trying. About every night I lay down just before he gets up for work as he gets upset with me for not sleeping. I go "Bonkers" just laying there tossing and turning so Id just rather be up and do as do. Well no wait I'd rather be sleeping!!

George loved the info on vailum and am seeing my doctor tomorrow and will be asking about this "paradoxical reaction" to Valium. I've been taking valium for 4 years off and on. I started it originally b/c of anxiety attacks, then started taking it later in the evening so I could sleep but it doesn't make me sleep, it just helps with anxiety.

Mook wish I could give you some ideas, maybe tomorrow once I get back from my doctor I will have more info on what to do so we can sleep. (o:}

Once I get back tomorrow I will come on and post if she give me something solid to tell you or shall I say recommend to you. Really should see your doc though or talk to him/her.

That's what I'm going in for I can hardly take this not sleeping and he's getting on to me for not sleeping as it begins to tell on me after a few days. I'm about due a good sleep its been a wk and a half now.

You really should make an appointment and/or call and keep calling, call the answering service if its after hours. Don't know about you Mook but I'm not the warm milk type, no offense Di (o:}

Best Wishes and Good Luck.

 

Hello, Terry Welcome to DizzyLand. So sorry you are having a rough time of it.

You state that your choices are retry the Meniette, try the Meniette with geramycin treatments, or try a new surgery that they are doing in Japan. The US wants to try it to see the results. Half the people will get the treatment the other half a placebo effect. Has any one heard of this treatment where they will redo my shunt and put steriods inside my head with the shunt?

I've done none of these but there are others very knowledgeable about this and I'm sure they will be around before long to help.

Best Wishes and Good Luck

 

LOL- Teresa,

Trust me-- I'm not the warm milk kinda gal either.... I hated the taste of it!
Give me kahlua and cream anyday ---- but then again, I don't drink often either.... and when I'm having insomnia-- I think anything short of taking a hammer to my head isn't going to put me to sleep!

 

Di, I have to agree the "ONE" time I did try it I had to spit it out . Milk is made to drink "Ice Cold" (Yummy) not warm (YUCK) lol (o:}

 

greetings; best wishes to all who suffer

but the numbness tingling that sounds different that menieres or even SCD but it does sound more migraine related or med related - now i've had drop attacks where i've hit my head and became unconscious but only because i hit my head in the process of dropping

please see your ent or another qualified ent

hugs/prayers

 

Hi Mook,

I cant say much more than what the others have said but I did want to welcome you to the site.

Maggie

 

Mook,

Welcome to the forum. I have to agree with the others. Sounds like something else is going on. Also pain in the lower abdomen can be a reaction to meds you can't tolerate. Most meds will have a side effect of abdominal cramps, for me they are really low (in the colon not the stomach) and are very sharp (knife sharp). This could be a sign that you can't take valium, or possibly the diazide.

The best advice someone here gave me when I couldn't get to sleep was to sing "99 bottles of beer on the wall" in your head. It prevents your brain from thinking about stuff and eventually boors you into sleep. Maybe it will work for you.

You need to find what triggers your symptoms. Start a symptom journal.

Record:
When you eat
What you eat
What meds you take
When you take the meds
Your MM symptoms and changes thru the day (times)
Stress levels
Menstruation or Menopause symptoms

Food allergies are a fairly common trigger for MM especially gluten (wheat & other grains) and dairy. If your symptoms usually get worse after eating the same type of meal then you can try eliminating that food from your diet. If you eliminate an allergen it should give you some relief with in a week or two at the most.

Common triggers:
Sodium
MSG
Stress
Fatigue
Wheat
Dairy

Less common but reported triggers:
Nicotine
Seasonal allergies
Hormones
Alcohol
Caffeine
Chocolate
Other inhalant allergies
Other food allergies
Weather
Sugar
NutraSweet

Good luck, Tracy

 

I have been taking Amitriptylene (25 mg) now for years. I take it about an hour before bedtime and when I awake in the night I can return to sleep easily enough. I enjoy a nice cup of herbal tea - Yogi Lemon-ginger flavored. I also read to fall asleep so I can have something to thing about to tune out the tinnitus. I always say mine sounds like my head is in a running clothes dryer and someone is talking through a fan - you know how peoples voices seems clipped off in a fan. Attempting to hear through the noise as well as being nearly completely deaf is so annoying. ??? ??? Even so, I still have nights where I can't get enough sleep so don't feel guilty about naps during the day.

Being trapped in one position to attempt keeping a vertigo attack away would make my arms and legs numb and tingle too because I wasn't moving around like I would have normally. If I was having numbness and tingling while up and about, it was usually panic and anxiety.
It has only been recently that I have been able to sleep on my tummy again. Usually I was flat on my back sleeping and trying not to move.

Make sure you discuss this with your Dr. Lack of sleep is also a symptom of depression.

 

I suppose it is catching up with me I was in bed and "Did Go To Sleep" by 1am last night but was up at 4am :-\

I normally slip into bed just before he gets up for work. He's caught me a few times lately and is giving me a hard time. I'm happy he cares enough to say something. It's insistance and my feeling like crap 90% of the time that I'm seeing my doc today at 3.
He's so lucky he can lay down to go to sleep and its like before his head hits the pillow he's sleeping but then again he works 10 hours a day ....... Wish I could work :-\ :'(

Oh well, Mook if you see this today. When I get back if she gives any good info I will pass it along for you to talk with your doc about. O and I do "Always" go to the doc with a list of things I want to talk about b/c if I don't I seem to always think of this or that I wish I had remembered once I've left. With my list I don't forget things!! ;D

If I don't bring out my list she will ask if I have my list b/c she's so used to my having it ;D 8)

 

Joyce this Amitriptylene, it does make/help you to go to sleep and get a good nights sleep? I'm going to Google it so I can see more about it? May mention it to my doc when I go in.

 

Thank you all SO much for the feedback!
One of the nurses contacted me yesterday afternoon and insisted that the pain in my stomach and inability to sleep could not be cause by my medication (Thank you, George for the info! I was able to verify this prior to calling.). I attempted to explain I did not have these issues until about a week after starting the Valium and she continued to tell me that Valium makes you sleepy. She just wouldn’t listen and told me there was nothing they could do (I must be wrong and I CAN sleep – I’m just not trying hard enough I guess! lol). So, needless to say I called the main office back and had them move my appointment up to tomorrow. I also plan to speak with my doctor about the nurse I spoke with – what if my skin was yellowing, would it still not be a problem?! Okay, it frustrated me a bit… she just gives nurses a bad name.
Teresa, good idea on the list! Every time I go I forget something I wanted to ask about! My husband though I was being weird because I wrote down every symptom that I feel both daily and during an attack. Because there are some symptoms that I haven’t been able to find on the multiple sites listing symptoms, I am taking this to my doctor to rule out/determine other issues (Thank you, Di!).
It’s great to find a place where people can relate to this… most just look at me like I’m crazy or like it’s just not a big deal. Thank you, All again!

 

It can be so very frustrating dealing with medical personnel. I guess the trick is to always be assertive. In the end, you have to stand your ground and tell the nurse (or doctor - or whomever): Look, this is not your health and your body! I would appreciate if you allowed me to make my own decisions here. Yes, Valium does indeed make the great majority of people sleepy - but please consider that I may belong to that tiny minority for whom this is not the case. Switch my meds and let's see...

Easier said than done. So many times I've walked out of doctors' offices thinking "I should have said this or done that" I had one ENT treat me like dirt a few months ago and I just walked out of his office and never went back. (He told me that my hearing fluctuations were in my head)

Best of luck
George

 

amitriptylene is a good and clean medication but it tends to put a lot of weight on people who take it...just an observation and thought!