Arthur: looking for insight

[Rosetta]

Hi. I answered your question about Tylenol on my thread, but I didn’t put @Arthur.

 

I read some of your thread.  I’m sorry to see you are having such terrible jaw pain.
 

I wake up with my right jaw in discomfort several nights a month.  I have sleep apnea which I believe has something to do with the muscle tension of WD.  Cause or effect - I don’t know.  At times, the tension goes from my temple down to my chest (Pectoral muscle) and also, down to my back around the area of my shoulder blade.  Usually, if I have those issues, a number of muscles up and down my right side are affected.  I had two identical mouth guards, but I bit through both of them at the position of my front teeth ages ago.  I should wear it any way.

 

Joint inflammation is also a symptom of PWS for me.  Sometimes it’s both sides, sometimes only one — my knees, my elbows, my wrists, my hips, my fingers.  The jaw is a joint.  It could be that you have swelling of the joint in addition to muscle tension.  So, the joint is inflamed and sore, and the muscles are pulling on it quite strongly at the same time.  Now, that’s great fun, I know, because I have been having that for a few years.  It, too, is less frequent, and less severe.

I have dystonia.  You may not.  There are various muscle tensions as a result of ADs and benzos that are not dystonia.  If your jaw is actually dislocating, that’s pretty serious.  I presume you don’t mean that it “feels” as if it’s dislocated, but that it has been actually confirmed as dislocated. Do you have bone rubbing against bone?  What kind of surgery is the doctor recommending?

 

I notice that you took Ativan in March of 2019.  I wonder if you became dependent on that, then CT’d and have been kindling yourself ever since with each change of dose or drug, and the pot, too. 
 

A CT of a benzo will cause a lot of muscle tension problems.  I am still having them 4 years later, but they lessen a bit every few months.  I see consistent progress on that front.  I believe this is because I stopped “changing the dose.”  I CT’d — NOT the right way to stop changing the dose, but here I am.  Occasionally, I will have a wave that is more intense than the last.  This is normal for PWS.  At those times, my muscle tension increases in severity.

 

Dystonia, if that’s an issue for you, resolves itself, I believe, if one stops kindling the system.  It has become much less intense for me.  Very rarely does it cause a headache or “pain.”  It may ache or be very uncomfortable, but the painful type that used to be so common is now quite rare.

 

There is really no cure for this condition but stabilization on a consistent dose for months while resisting the panic and the temptation of adding a new drug or ditching another.  If you need surgery to protect that jaw, then you need it, but I would make very sure of that before going under anesthesia.

 

Rosetta

[Arthur]

Thanks.. I’m holding my doses of everything at the moment.. I have trigeminal nerve damage and I am now going the route of trying nerve blocks and things of the such to manage my condition.. I got a double whammy with an almost impossible situation.. can’t add more drugs..I was put on them initially because of the nerve damage.. no one told me they use antidepressants for nerve pain.. I thought it just went away and then my dr told me I could just stop my antidepressant.... wrong.. 4 yrs of hell.. now I must find a way out without taking more medications.. double edged sword.. thank you for taking the time.. I wish you well on this journey..one thing I’ve learned thru this suffering is real empathy for those that suffer.. it has made me realize how foolish the way we live in this human condition .. the goal of it is completely backwards.. when you spend your time lifting others up you always lift yourself.. myself I’m praying for a miracle..

[Arthur]

Question for the moderators.. should I crush my Amitriptyline before I dissolve it in the one ml of vodka of just let it dissolve.. I is difficult getting all the powder into such a small amount out liquid 

[Arthur]

Guys I need help with tapering the liquid.. I have been crushing up my 10 mg amitriptyline then dissolving it into 100 ml of water and pulling out 32 ml to give me 6.8 mill of amitriptyline liquid.. I do this daily.. how long should I let the tablets dissolve for and can I keep making my cuts with 100 ml of solution??

thank you..

[brassmonkey]

Let the tablets dissolve at least over night.

Yes, you can keep using this formula for your reductions. The liquid will keep for four or five days in the refrigerator. 

[Arthur]

@brassmonkeyshould I left them dissolve in the refrigerator or at room temperature before refrigeration?

[Arthur]

I’ve only been letting them dissolve for a few hrs sometimes.. is this giving me Inconsistencies in dosing?? I have been all over the place for almost a year in my sleep and emotions??

[brassmonkey]

Let them dissolve at room temperature.  The liquid should be fine if you let them soak for a few hours, the overnight is for insurance.

[Arthur]

Hey.. I’m pretty upset at my self but I have to ask.. I had to take 4 mg of Valium to get thru an mri.. I haven’t taken any benzo more than a shaving of a pill every few months in over 4 yrs.. is this gonna mess me up.. I didn’t want to by I can’t take the mri machine.. I can take anything else but that and this needed to be done.. 

rhank you 

Arthur

[Arthur]

Checking in.. I have received my mri/nuerography results.. I have a damaged pterygoid nerve that is either trapped or damaged that is radiating pain outward to referring structures.. my options are medications(which are last on my list), Botox into the muscle and nerve space and decompression surgery.. I am in constant unrelenting pain.. I was hoping it was all antidepressant related but it is not unfortunately.because now I suffer the effects of antidepressant withdrawal and chronic pain.. what I am trying to get at is what would be the best harm reduction standpoint to take with this.. I have made zero changes to my medications and have not introduced new ones..insight would be extremely valuable.. and could the pain be contributing to my autonomic dysfunction and exasperated psychological problems

[Shep]

Arthur, you may want to search for a holistic web forum for pain management to see what kind of non-drug methods are recommended for this condition. The fact that you've stopped tapering for now is good, as it will give your nervous system a break from that additional stress and allow you to concentrate on healing from the nerve injury. 

[Arthur]

I have searched high and low.. my options as far as non drug are Botox injections.. stem cell into the area .. or repair/decompression surgery.. I feel hopeless.. I have wanted to kill myself often for the past 2 yrs.. I have zero quality of life.. my mom keeps telling me that it’s going to get better and we will find a solution that aren’t drugs...my facial pain specialist is aware of my ride with drugs and my need to not have to take more of them and has been accommodating in my options 

[Arthur]

I’m going to be completely honest.. the  lexapro they put me on back in 2013 gave me my life back.. I came off because I did not think that I was really depressed.. it was covering the nerve pain I was encountering.. all hell broke loose after being off 2 months.. went back on and I still had the pain..now my thoughts are insane.. I am exhausted and I cannot rest in the day or I am woke right before with a shock to my nervous system with unimaginable terror.. and I have been living with the introduction of nerve pain for 4 yrs which has further destabilized my nervous system.. I am in complete utter hell.. I cannot be alone.. I cannot do things like go be with people unless I am constantly moving.. constantly distracting..I must follow and set routine or else I fall to pieces ..my pain has been centralized and there is a sympathetic component to it now..my sleep deteriorates with any stress.. I cannot believe I can still work.. but it gives me distraction and exhausts me so I may sleep some.. I have 2 children .. I have failed them completely.. I have failed my wife with the foolish decisions not respecting the power of these drugs and rocking the boat when I had people relying on my for life.. and I love them and can share no joy with them as I am locked into a never ending cycle of pain and fear and destabilization.. I am sorry for this rant.. I live in utter hopelessness..

[bijay]

@Arthur You are doing the best you can under difficult circumstances.  Everybody needs to rant every once in awhile. 

 

Have you ever considered using photobiomodulation (also called low level laser therapy - LLLT) for your trigeminal nerve pain?   More dentists are using it now for healing and analgesic purposes, and you might want to look for a dentist in your area who has experience in using it.  Big advantages are that it is non-invasive and non-drug.    Here is some information about a few case studies:

 

https://www.practicalpainmanagement.com/treatments/complementary/application-note-using-photobiomodulation-treat-trigeminal-neuralgia

 

It may be worthwhile contacting the authors to get complete information on the specific equipment and treatment parameters used, as these can be critical in whether it works or not. 

 

Although many consider LLLT an alterntive treatment, it is starting to gain legitimacy in traditional medicine - insurance companies like Aetna and Humana are now covering it for treatment of oral mucositis, a painful condition caused by cancer treatment.  It is not just another gimmick. 

 

Hope you find this helpful. ❤️

 

[Arthur]

@bijay tries if but maybe the parameters where not correct so I will contact the authors to see.. thank you for reaching out.. the stress of this makes me feel outside of my body because I have to be in order to  survive.. I can feel no emotions because I just cry at the loss of my life.. I don’t know what’s pain anymore and what’s drug withdrawal.. I have complex ptsd from this.. I want to go back in time before that fateful decision to listen to my dr and “just cut it in half and stop after a few days” ruined my life.. my poor children and my poor wife have had to deal with this for 4 yrs.. robbed of there father.. robbed of her husband.. I can’t really do much but accept.. I was a mess before medication.. it helped a lot.. that train has passed.. now I must find the strength to put one foot infront of the other.. @shep I have these adrenaline/shaking moments at night.. especially when I am stressed trying to go to sleep.. they sometimes can last all night and I will only get a few hrs of sleep..this all started after withdrawal from drugs and cannabis.. will it ever go away.. I wake up and o just lay there with my restless legs trying to cope with the pain.. then I get up and drag thru life like a zombie..I don’t now what to do..

[bijay]

@Arthur  I do understand what you mean about being outside of your body, as I also feel like I have to "disconnect" myself because the sadness and (both the physical and mental) pain of reality are just too much to take.   But at the end of the day, life is just hard right now, and I am doing the best I can.

 

Peace and love to you ...

[Arthur]

If I am going to find out what is doing what and be able to draw on you all’s help I must keep accurate notes

so this is my timeline and how the drugs make me feel 

aug 8

wake 6 am

extreme anxiety because of pain and facing the day in my situation 

go to couch and stay there with pillows around my face just breathing and shaking my foot..

twitch and jerk from time to time

random Imagery of things in my life. Mind racing

take trileptal at 845

seems to make the imagery worse

forced to get up and move

go for walk outside to get vitamin d. 
spend time with family

cannot nap because when I try my body jerks awake with a panic feeling 

face hurts all day 

aching and burning with constant jaw dislocation and popping 

845 trileptal 

930 tingling in face slightly worse 

sleep anxiety over how I will be able to provide form my family and be able to get this Botox procedure done

scared of losing my mind which I already have to an extent

1045 ami- try to relax 

1130 2 mg melatonin 

1145 to 12 sleep

aug 9th

3am Wake.. vivid dreams

take .5mg melatonin 

wake again 530.vivid dreams

take .5 melatonin cannot go back to sleep.. I have extremely vivid dreams that wake me constantly.. it is a running thing with me it seems.. mostly violent and bloody.. very occasionally pleasant

 

[Arthur]

Memory issues .. extreme dry mouth

[Arthur]

Aug 9 continue

work 1 till 6.. mini panic attack

injurt back as I over did it in my weakened condition 

730 eat diner

845 36 mg trileptal 

burning sinus pain

go downstairs to sleep 

1045 6.8 mg ami

1130 start to feel tired 

1130 2 mg melatonin

sleep till 5 am

.5 melatonin 

rest till 730

aug 10 

845 36 mg trileptal 

lay on couch and try to be with pain

Want to sleep but cannot due to jerks and cortisol spikes

1130 eat breakfast eggs and oatmeal

1230 anxiety rising exhaustion

suicidal ideation.. face burning left side..just breathing.. shaking legs constantly to distract from pain.. acting out hallucinations when my eyes are closed.. worried I am developing dementia 

230 putter around house 

Eat lunch

just survive basically 

845 36 mg trileptal 

go downstairs to distract and watch tv

1045 6.8 mg amitriptyline 

1130 2 mg melatonin 

Up restless with left side face burning

1245 2 mg melatonin 

sleep till 5am

Unbearable stress pain and exhaustion 

breakdown and take 7.5 zoplicone have not taken this medication in 6 months

sleep till 830am

left side of jaw in spasm

 

 

 

 

 

[Arthur]

Aug 10 evening 

1045 trileptal 

1130 2mg melatonin 

no idea how much sleep

330. 2 mg melatonin 

qausi sleep

6 wake

Left side pain in face 

lay there till 730

go upstairs on to couch

an just moan

845 36 mg trileptal

sloghtly calmer but stranger out of body feeling

confused disoriented thoughts

10 am bathroom

i try just to float thru the day..

feel as tho I am dying and losing my mind

[Shep]

22 hours ago, Arthur said:

1130 2mg melatonin 

no idea how much sleep

330. 2 mg melatonin 

 

You may be taking too much melatonin, which can turn paradoxical and wake you up. Please see:

 

Melatonin for Sleep

[Arthur]

1230 anxiety on high yet exhausted 

waiting for consultation with nerve specialist about options that don’t include drugs..

Forgot to add at 330 am extremely loud tinnitus that makes going  back to sleep next to impossible.. 

 

I have talk to one of the head neurosurgeons in the country and given them my report.. they say I will need nerve repair surgery.. I have informed them of my history with medications and my poor reactions to them.. the doctor has told me that this is what must be done as both nerves are damaged.. I am scared.. I have no choice tho as the only other treatments are very high doses of medication..

[bijay]

Arthur, I truly hope and pray that the surgery will repair the nerve damage (something drug therapy cannot do) and provide you with relief. ❤️

[Arthur]

4 hours ago, bijay said:

Arthur, I truly hope and pray that the surgery will repair the nerve damage (something drug therapy cannot do) and provide you with relief. ❤️

@bijayThanks .. I’ve know this forever but the doctors just kept putting me on different drugs telling me it’s been to long and to start and stop this on and that one.. so now I have paws on top of this.. and I’ve know what it was the whole time.. now the medical establishment is saying surgery Is a good idea no matter how long it’s been…. And I’ve done my research high and low.. British journal of medicine 2020 .. 120 patients 95 percent got relief.. helps that I have the teacher of peripheral neurosurgery at John’s hopkins university telling me the same so it give me hope. He just retired and is referring me to his team at the hospital .. all the shoulda woulda.. I think being in constant pain is really hurting my withdrawal from the lexapro and making it impossible to taper.. more stress destabilizing the cns.. 

 

@Shepi read the melatonin thread and I’m going to low my dose bit by bit and do you think I should move my meds to and earlier time slowly so I can be in bed going to sleep at 1030 while still give ig them 2 hr between to minimize reactions?

[Shep]

9 hours ago, Arthur said:

@Shepi read the melatonin thread and I’m going to low my dose bit by bit and do you think I should move my meds to and earlier time slowly so I can be in bed going to sleep at 1030 while still give ig them 2 hr between to minimize reactions?

 

An earlier bedtime may be very helpful for you. You're right to do this slowly - we recommend only moving your drugs one hour per day. Spacing them 2 hours apart is wise. Please let us know how you do. 

[Arthur]

My dry mouth is extreme.. if I do not use a xylitol mouth d*ck over night.. it is unbearable.. during the day it is survivable.. but I am worried about the xylitol.. but it’s the only things that provides alittle relief

[Arthur]

Disk.. sorry

[bijay]

Amitriptyline is notorious for causing dry mouth (I know from experience), and from google it looks like tripleptal can cause it too.  There are many people here who experience it during withdrawal.  

 

It may be more noticeable at night if you breathe at all through your mouth.  Sleeping on your side instead of your back may help, and there are various things you can buy on Amazon to keep the mouth closed during sleep.  You may also want to try coating your mouth with a small amount of an bland, edible oil before bed.

[Arthur]

Also I have developed an inability to stay still at all during the day.. this has been on repeat for the last two yrs.. could it be akathisia.. it’s like my mind is always on no matter how tired I am.. when I am typing or focusing onsomething I can sit still but outside that I am always shaking my foot to stay awake because I cannot tolerate the feeling of almost falling asleep and having the adrenaline jolt wake me up with extreme dispair.. thoughts on this please..

aug 13 symptom pattern

restless sleep bit fall asleep quickly 

1045 6.8 mg amitriptyline 

1115 melatonin 

1130 sleep

wake up constantly from dry mouth.. I feel like I would have slept they fine if not for this symptom

much less stressed because do not have to work with on going symptoms 

still poor sleep as a result of side effects from amitriptyline..

This medication is destroying my salivary glands..

815 36mg trileptal 

constant tinnitus .. this has been a major symptom since ct of lexapro

930 cold limbs.. exhaustion.. agitation 

12 pm escalating anxiety and need to get out of house but then when I’m out of it I am hit by complete exhaustion..

@bijay thank you for the suggestion I will try with some olive oil.. I gotta get off this damn med.. have you or any one seen this??

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6714424/it is for dry mouth and I am looking into it..  this crap has made it all about me me me.. 

@bijay how are things going with you in your taper and such?? How are things holding up??

[bijay]

@Arthur  Here is a link to one electrical device for dry mouth:  https://saliwell.com/   I have not tried it myself, but maybe I should.

 

You may want to try a more neutral oil first, like corn oil.  (I find olive oil can be kind of peppery.)  It also has the advantage of containing a lot of linoleic fatty acid, which is moisturizing.

 

Amitriptyline is a very powerful anticholinergic, and blocks the action of acetycholine which controls salivation.  If it is the culprit in your case, your salivary glands will start working again once you are off of it.  When I first tapered off the amitriptyline (too quickly) the first thing I noticed was how moist my mouth felt (and how sweet water tasted!) even though I didn't notice that I had dry mouth previously.  

 

In a nutshell, I am not doing well. But I have found it helps my mental attitude to search out people here and hopefully provide some moral support.  Maybe I will post something on my own thread since I haven't done that in awhile.  Thanks for asking ❤️

 

[Arthur]

@bijayplease do.. we are kinda of all we got besides family that is willing to educate themselves.. the only way thru hell is to keep walking.. myself I’ve always been on the selfish side.. born with great fear.. very sensitive… trying to find my faith in the grand scheme that is life..

[Laurennnbb]

On 8/14/2021 at 1:19 PM, Arthur said:

Also I have developed an inability to stay still at all during the day.. this has been on repeat for the last two yrs.. could it be akathisia.. it’s like my mind is always on no matter how tired I am.. when I am typing or focusing onsomething I can sit still but outside that I am always shaking my foot to stay awake because I cannot tolerate the feeling of almost falling asleep and having the adrenaline jolt wake me up with extreme dispair.. thoughts on this please..

aug 13 symptom pattern

restless sleep bit fall asleep quickly 

1045 6.8 mg amitriptyline 

1115 melatonin 

1130 sleep

wake up constantly from dry mouth.. I feel like I would have slept they fine if not for this symptom

much less stressed because do not have to work with on going symptoms 

still poor sleep as a result of side effects from amitriptyline..

This medication is destroying my salivary glands..

815 36mg trileptal 

constant tinnitus .. this has been a major symptom since ct of lexapro

930 cold limbs.. exhaustion.. agitation 

12 pm escalating anxiety and need to get out of house but then when I’m out of it I am hit by complete exhaustion..

@bijay thank you for the suggestion I will try with some olive oil.. I gotta get off this damn med.. have you or any one seen this??

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6714424/it is for dry mouth and I am looking into it..  this crap has made it all about me me me.. 

@bijay how are things going with you in your taper and such?? How are things holding up??

I experienced this from stopping Prozac and stopping benzodiazepines. I had extreme akathisia and jolting awake when trying to fall asleep. I was up for 8 days at one point. Melatonin made things worse for me. I ended up going to a great hospital. They put me on a mood stabilizer and gave me Trazadone for sleep. I ended up stabilizing and coming down from the akathisia withing a few days. The akathisia lasted 4-5 weeks for me. I made it and recovered. Try to keep a journal of what supplements and meds you’re taking, some of these interact and can cause paws not matter what it is. Our bodies become very sensitive one withdraw and anything can prolong the symptoms. This is why I had to go to hospital because I did not have a baseline and kept trying to take any supplement that could’ve calmed me on top of trying Ativan on and off. Epsom salt baths were my go too during these hard times

[Arthur]

@Shepso last week I cut out the melatonin in the middle of the night and slept 6 to 7 hrs for 5 straight days.. I ended up having some stress with a huge fight with my step daughter and my sleep completely deteriorated.. I’ve had 4 straight days on 3 to 4 hrs sleep and it is killing me.. and when I can’t sleep my my nerve pain is that much harder to handle.. I still have 3 weeks till I meet with the neurosurgeon and my ability to work is really suffering.. could this still be effects from my cold turkey of the lexapro compounded with pain.. I also added 100 mg of vitamin d as it helped my energy in the morning but have since cut it out.. vivid dreams are what wake me up at night and once I wake getting back to sleep is next to impossible because I am in constant pain..

[Arthur]

I slept from about 1 am till 730 today.. woke up with a headache and upset stomach.. I am beginning to notice when I take the trileptal about an hr later I begin to feel agitated slightly.. I will keep proper track of this symptom..

[Arthur]

I’m in a terrible sort.. I’m not sleeping and In horrible pain.. the doctors are saying I have crps of the face.. I’m missing most my molars and my tmj doctor says my bite is completely screwed up and all the muscles are in a start of chronic fatigue.. my trigeminal nerve is damaged.. my ears ring constantly.. the meds just make me feel dumb.. I don’t know what to do or where to turn too.. the neurosurgeon want me to get a Stellate block and a Botox injection in the jaw muscles to see if the can reduce the pain so I gives them a target area for surgery.. I don’t know really how much more I can take.. my body twitch’s and spasms and jerks.. all from stress and insomnia and pain.. woke up last night from a violent dream of me killing people that where attacking me.. I don’t want to go crazy and hurt anyone and it really scared me.. I’m honestly just ready to die.. can’t taper.. can’t do anything but exist in misery.. face burns..24/7..

[ChessieCat]

6 hours ago, Arthur said:

the doctors are saying I have crps of the face.. I’m missing most my molars and my tmj doctor says my bite is completely screwed up and all the muscles are in a start of chronic fatigue.. my trigeminal nerve is damaged.. my ears ring constantly.. the meds just make me feel dumb.. I don’t know what to do or where to turn too.. the neurosurgeon want me to get a Stellate block and a Botox injection in the jaw muscles to see if the can reduce the pain so I gives them a target area for surgery.

 

I am sorry to read that you having these difficulties.  However SA is a site for going off/reducing psychiatric drugs and is not able to assist you with these issues.

 

My suggestion would be to try to find a support group / forum for these issues where you might be able to get more information and support.

 

I have been in a similar situation with pain and lack of sleep on several occasions in the last year so I can truly understand your desperation and how it makes you feel suicidal, not because you want to die, but simply because you want the pain and suffering to stop.  If you are feeling suicidal you should try to find local support.  As an online peer support site for drug tapering SA is not able to assist with emergencies.

 

Please see this topic which has links to help lines:

 

for-those-who-are-feeling-desperate-or-suicidal