Chronic sudden insomnia for 1 year now and ongoing.

[steph847]

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

[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. 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.

[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

[milou12]

hi

[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.

[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.

[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