Chronic sudden insomnia for 1 year now and ongoing.

Hi,

I have had weird health problems over the years but to make a long story short, almost one year ago to this day I have developed sudden chronic insomnia.  My Neurologist has tried Ambien, Melatonin, and a host of other meds for the insomnia.  Nothing worked.  I do not feel physically tired.  I have symptoms which include, burning all over at times, a tingly feeling throughout my whole body at times, not feeling certain sensations like pain, cold or hot...  I was thought to have MS 5 years ago as I have lesions in my brain but yearly MRI's prove that nothing has changed.  Went to Mayo 5 years ago and was told I did not have insomnia.

So one year ago, I develop an attack.  My first symptom was burning all over, then the horrible insomnia.  It was like I went from sleeping like a baby to not being able to fall asleep at all.

So my Dr put me on Temazapam, which does help me sleep, but its a light sleep.  I take 30 mg of that PLUS 1 mg of Alprazalam (generic xanax).

I had a sleep study done about 10 months ago (2 months after onset of insomnia) and it showed lots of sleep spindles and a lack of deep sleep; only reached stage 1 and 2 of sleep.

My fear is Fatal Insomnia.  :(   I fear this because I literally cannot sleep at all on my own.  I have tried CBT, seeing a psychiatrist and even she is puzzled as she had me on Seroquel, and a bunch of other meds to help me sleep and nothing took effect, even at high doses.  The only thing that works is in the "benzo" class.

So do you think I could have fatal insomnia?  I do not have a family history of this rare disease, but the sudden insomnia is puzzling and like I said, its been one year now....

I am 33, female and have 3 children whom I love dearly.  I am scared of this disease.

Thank you for you time.

Steph

[steph847]

*** Edit** Mayo said I did not have "Multiple Sclerosis" not insomnia.  I do have insomnia.  Sorry for the typo.

[steph847]

**  Do not know how to edit my post, but wanted to say I have been on medication for sleep for 1 year now.  

[mtermcd]

Insomnia seems to run in my family.  Father had lots of trouble sleepin.  have taken sleeping meds to help me sleep but it seems to take a double dose to go to sleep and then I only sleep one or two hours

[steph847]

Ugh, it's awful..  I just wish I could be back to normal.  Hoping for some insight from the Dr. on here...  It's weird.  It's not just Insomnia, it's a lot of other problems that accompanied the insomnia all at the same time.  jerking, muscle twitching, burning skin, tingling in my joints and overall body, diminished pain sensation and on and on.  I have been tested for just about everything.  Bloodwork is ok, thyroid is fine, hormone's are fine, been tested for Lupus, Lyme's, Whipple's disease and on and on.  My Neurologist is puzzled.  He thinks I have pre-Multiple Sclerosis.  But MS does not cause sudden, chronic (on-going) insomnia and in fact causes the opposite problem; fatigue.

The only example I can give that makes sense is that 5 years ago during my last attack (which did not include insomnia at the time), I was depressed due to the uncertain diagnosis.  So I saw a Psychiatrist who prescribed Seroquel 25 mg.  Well, 5 years ago the 25 mg of Seroquel made me VERY sleepy.  This attack that started one year ago, the Psychiatrist tried up to 400 mg of Seroquel and it had no effect and my body does not respond to most medications (side effects wise, to make me sleepy) except for benzoziazipines (sp?)...  It's very frustrating and I am very scared.  I just want to sleep normally.  I hate taking medication....  The sleep Dr said that I am sleeping ok on the sleep study but I had to take the 30 mg of Temazapam in order TO fall asleep.....  

I know this all sounds crazy.  But its all hard to explain....

I just hope I will be ok...

[Dr Rajput]

Hi, welcome to the forum, you seem to have chronic insomnia and resistant to common therapy. In young to middle aged individuals, sleep maintainance problems tend to be associated with stress, anxiety, or circadian rhythm sleep disorders.

They may also be associated with sleep disorders (eg, sleep apnea, periodic limb movements), medical conditions that cause pain, psychiatric diseases (eg, anxiety, depression), or the use or withdrawal of alcohol, nicotine, or other substances.

You need to go for morning exercises (as suited to pregnant state) which will make you fresh and active all day and tiredness at the end of day will help you to induce sleep naturally. Yoga and meditation can also help to eliminate stress and create a more peaceful sleeping atmosphere and provides a relaxed state of mind.

Psychotherapy can also help you to learn how to cope and deal with the various stressors in your life. Do not worry, follow the above mentioned methods and the symptoms will alleviate. I suggest you to consult sleep specialist in this regard. Keep posted. Take care and regards.

[steph847]

Thanks for your response.

I fear fatal insomnia because I do have a lot of the same symptoms.  I know it is rare, but just based on what I told you above, you do not think this is the case?  I know you can't dx me on the internet but can give me medical advice.  

I just never feel tired.  My Neurologist initially thought the wiring in my brain was going haywire due to seizures.  I was Dx with Temporal Lobe seizures and have lesion on my temporal lobes, bilaterally.  These lesions have been there for 5 years now.  But my Neurologists thought was that parts of my brain "pathways" were damaged due to the un-treated seizures and that is why I can't sleep and have a lot of other weird symptoms.

To make a long story short, I had an EEG which showed activity in the temporal lobe and that made for a Dx of temporal lobe seizures to which I don't even realize or feel the seizure.  

But I fear fatal insomnia.  And wouldn't you think after ONE year and being on Lyrica 300 mg a day that those pathways would have been re-built and back to normal?

Thanks for your expertise and advice, Dr Rajput.

Steph

[KatEyes]

I am not a sleep professional, just have been dealing with sleep disorders for many years. Some of my issues caused insomnia, then once the erratic sleep patterns became my norm, it took a long time plus diligence to sleep hygiene to regain the ability to sleep somewhat normally. I ended up slowly weaning off meds (under doctor's care), getting a sleep study, then methodically starting anew so as to assess which meds might be ineffective, or even worse, contributing to the sleep problems. I have sleep apnea, Restless Leg Syndrome, and Periodic Limb Movement Disorder. Only effective treatment of these gives me the opportunity to sleep as I need. I believe my brain employed insomnia as a survival mechanism, avoiding sleep because it was not just miserable, it was dangerous. Sleep issues can leave one feeling frazzled, anxious, and nervous. Unfortunately, these feelings can perpetuate the sleeplessness. Please try to eliminate Fatal Familial Insomnia from your worries. You said there is no family history. And you DO sleep with medications. If FFA were treatable it wouldn't be fatal.

[steph847]

Thanks for your comment...  Yes, this makes me very anxious because its been one year.  I do not feel tired enough to fall asleep, and I am very active during the day with my 3 children, working and I still do not feel tired.  even with the 30 mg of temazapam and 1 mg of xanax I still do not sleep a deep sleep and wake up often and do not feel effects of being tired.  It's very weird....  I read that people can still get sporadic fatal insomnia that is not genetic (Correct me if I am wrong, Dr Rajput) and medications like Benzodiazepines (sp) helps initially but then stops working altogether....  And with my other symptoms I wonder...  :(  It scares me a lot as I am only 33 and have 3 children whom I love dearly and want to be here for.  I do live my life and try not to think about it.  But its hard...  I hate taking medications and have tried not taking it and I am wide awake for days if I don't take it.  I still never feel tired.  Have you heard of this before?  

Also what is weird is that usually I am very sensitive to meds, even Tylenol and since the attack one year ago, I do not feel any side effects of meds.  My Dr has tried Seroquel, zyprexam risperodone, Ativan, Ambien, Restoron (A melatonin I think) and a lot of others.  The only class that helps me is in the benzo class and I did read that people with fatal insomnia FFI or SFI only respond initally to benzo's or barbiturates.

so this is what scares me...  I wonder how long I will continue like this...

Thanks Dr. Rajput and those who are listening and responding.  I talked to a neurologist about this on another forum and he reccomended that I talk to a sleep dr on another forum.  He personally did not think this is FFI but of course cannot dx me over the internet.  My personal Neurologist didn't think so either but what is weird is that I did have a Pet Scan 5 years ago and it showed decrease action in my temporal lobes which I think is near the hypothalamus and the hypothalamus controls sleep, which FFI attacks.  

I have done my research and have had many tests.  I haven't currently had a Pet Scan.  I am scared to and plus I cannot afford anymore medical bills.  

Thank you.

Steph

[doctorsarebad]

I'm in the same kind of situation as you - 1 year in now. I'm a 36 year old male with Aluminum poisoning. My trigger was an overproduction of adrenal hormones which made it impossible to sleep. I have been able to identify several other root causes (for me, not for you), but there is one that looks to be unbeatable. I'm still waiting on an MRI.

I have identified a protocol that will work to keep me going in the short term (drug rotation), but the drugs are imaginary as I feel I would need about 10 of them for the strategy to be effective. And of course no doctor would help me do this. Maybe a shaman.....

I'm in Canada, so Immovane and medical Cannabis are the only options that have been effective for me. And effective dosages are rising steadily for both. I am as afraid as you are, but I feel there are no options remaining for me. I probably have about 2 months before I will have to start rationing medication (and therefore sleep). From the sensations I have been able to feel in my body, I think organ failure will follow, I'm just not sure which ones.

I think the best strategy is to keep testing and keep learning about your body. Hopefully you'll hit on something that works.

[maria20]

Hi Steph, I read your post, and I believe I am in a similar situation.  Since September first, I have not been able to sleep with Ambien or Ativan.  I had never, ever had this type of sleep problem before.  So, I am wondering, did it ever resolve for you?  Do you have any suggestions as to what worked and what didn't? I am scared becoming adddicted to Ativan.  Thank you for your help.

[milou12]

hi

[milou12]

hi, i am a 53  year old female and my symptoms sure sound like yours.. i began having burning sensations in knees and  thighs 9 months ago after having a D and C.  i started taking 7.5 mg of zopiclone and it worked well for two months then i had a hysterectomy and after that the insomnia got real bad.  I am now having to take Restoril during the day so that i dont get headaches and taking 15 mg of zopiclone per night also.  Otherwise i cant sleep.  I can't even take a nap, i cant fall asleep on my own anymore.  The headaches during the day are persistent, especially base of skull and like  vice in the temples.  I am so tired and i ache everywheres.  i got an mri done and there are 10 lesions in my brain.  My blood work comes out ok.  I also think i have fatal insomnia.  I feel just awful and before that D and C, i was sleeping very good and no pains anywheres... would like to know how you are doing now, i see its been since december 2009 you have been like this.. i figure this whole thing was caused by the anesthetic for my two surgeries

[Nanasluv4u]

Hi Steph,
Wow!!! So many simalarities. I started this search hoping I would find some info on insomnia as it's been a problem of mine for years. I hope I can share something that might give you some insite or at least some hope and comfort.
The beginning of my journey into full blown insomnia began 14 years ago when I started on Paxil after being diagnosed with Fibromyalgia after my mother died.  Little did I know it would lead to years of various anti depressents, 9 years of Ambian and 4 years of Seroquel for the mental problems the chronic pain/depression cycle caused. Amoung a number of MD's I too went to a neurologist and the EEG's of course showed some seizure activity. How can you get a normal EEG when you don't sleep during the EEG? So those results lead to Neurontin for years.  If you named the drugs you've been on I have probably been on them as I am 63 years old.  I even tried Biological infusions costing $5000 dollars each. Nothing short of narcotics and Zanex helped. The pain doctor I was sent to becasue my MD didn't know what to do with me, put me on a drub called Kadian, a morphine derivitive. All anything did was create dependency and treat symptoms. I even tried MMJ and got my license years ago. That had it's advantages of laughing myself stupid to the point my husband couldn't deal with me.  I went off all RX's over the past 9 months and quit MMJ  I've nearly lost my mind but the parh I was on was not one I could live with either.I had gone from 140 pounds to 245 pounds, enough to drepress as well.. That created all the side effects of obesity.
I am still not sleeping well. I have used sleep herbs with GABA and Melatonin and Tryptophan.to no avail.Something is not right. You may feel that too. It's hard to think straight when you don't get restorative sleep. I know I have made rash decidions I regret more than once. I do have a Vit D deficiency and have begun on Vit D3 supplement I get at the health food store. I refuse to take the RX 50,000 of D2 perscribed. It's too soon to know. I've also included Omega 3 Fatty Acid supplement as well as a tumeric supplement for inflamation (inflammation). The jury is still out on whether or not my pain and insomnia are helped. I guess what I want to say is keep on researching and learning as you are not alone in your struggle and r.coaster ride you've been on. The fog of the past 14 years is lifting slowly. My faith that God has not given up on me is what has kept me going and not giving up totally. You are in my prayers.

[Nanasluv4u]

Would you mind sharing  the source os your aluminum poisoning? I have been told by several people, health care professionals as well, the aluminum in most deorarants can cause problems.
Thanks
N

[rceler]

I have experience similar insomnia also for a month I am only 26 ... I've tried xanax triazolam ambein otc meds herbal teas I've visited multiple docs .. neuro physic doc also no luck ... My ears ring I lost my appiate and weight but i forced myself to eat so i maintained my weight now ... This all started for me after a stressful time in my life and ever sense I haven't been able to sleep normal either ... I do dream but i wake everytime after these dreams I think I sleep like 2-3 hrs then dream then wake toss and turn then go back to sleep and dream again for less the 2 hrs .. I remember all my dreams.. I start to think i am not really sleeping I jus lay in close my eyes have dreams but wake up quick ... It's Werid I'm afriad I have FFI also ... It's horrible I feel weak less energy and i so young to go through this .. my physic doc prescribed serquel and limictal but i haven't tried them yet .. I jus worry because i don't wanna take physic meds i jus wanna be normal again ... Really I jus have a sleeping issue .   I only take buspar for anxiety right now I'm trying that out but Idk Wat eles to do .. I feel the same u do hopeless

[xpiratesforeverx]

I'm so sorry to here what you are or were going through. I really hope you found answers...I've been having so many of the same symptoms, like the burning sensations. That's how this whole thing began with me about three months ago. I've developed so many odd neuro symptoms. For example my a senses of smell and taste are less keen at times, I get tingling and burning, strange involuntary moments, and this feeling of detachment from the world around me. The insomnia happen to me two months ago. I literally cannot fall asleep whether it is a nap or bedtime. I am afraid of the same things you are like FFI. I'm so scared that my brain is degenerating rapidly or something. I hope you are doing well now though.

[xmissgisellex]

Can you please contact me via email at
***@****

I have had the same symptoms as you for the past 8 months and also feel like I have FFI because I have been tried on 11 meds now and NOTHING has worked. I see that you haven't posted in a while and would like to know how you are doing/recommend anything to me.
Thanks

Giselle

[darcy190]

I have just read these posts about FFI. I have had a lot of problems with sleep over the years. Of late it has been getting much worse, now I am not able to sleep at all. I have tried all medicines and nothing works, the latest being Melatonin, Ambien and Zopiclone. I am feeling exhausted all the time, have poor appetite, nothing has any taste, constipation and aches and pains burning and tingling sensations all over my body. I am not able to work now or function normally day to day. It is impossible for me to relax in bed at night or any time instead I am very restless. I often feel that I am about to go to sleep for a few seconds and then I am am awake again just after that. I either feel hot or cold or both together and feel restless or agitated all of the time. I have told my doctor about all of this and there is no response apart from it being linked to anxieties, all in my mind and that there is nothing wrong with me.  I am now getting really worried because I live on my own and how could I manage when things worsen with this horrible disease.  I am sure that I have it although it might be Sporadic Familiar Insomnia. I say this because I have no link with my biological parents as I was adopted at six months.  I have no way of finding much out now as I am  57 and feeling so ill with these symptoms and have such little energy left to do anything. I would like to have some support from anyone who had put a post here.  Having no support from my physician or remaining family is really hard for me and I am now really stuck to know what to do. Any comments would be appreciated.

[Danjob]

Wow this post really caught my attention. It all started with weird burning sensations as well, and some pretty intense muscle spasms and then I could not sleep, I have lost my sense of smell and everything around me seems completely unreal like I dont recognize anything even my own family seem like strangers. I have had EEGs, cat scans and the likes which turned up nothing. and this came out of nowhere about two months ago, I havent slept at all since maybe 2-3 hours in the beginning but now I cant tell if im sleeping at all. when im "dreaming" I can still move its terrible. Doc prescribed seryquil for sleep and effexor for the anxiety but nothing is helping... it really feels like the worst thing in the world, I used to sleep 8 hours a night no problem, now I forget what that feels like all together. My heart goes out to everyone suffering from this. From what I understand FFI is about the rarest condition you could get so the odds of anyone having that on this forum are almost impossible.

[wmarvin]

How are you doing now. I found you on another health board. I really hope you're okay.  Contact me please