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Re: Depression, short-term memory issues

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Christy,

So many of us are struggling with just the general challenges of every day life-- and then trying to cope with this illness is one more "thing" to deal with.

I think it's important that when we find ourself having more short-term memory problems and loss of recall-- that we slow down, get some rest and try our best to relax.

One thing that I did figure out, I was taking Ambien nightly for over a year to sleep. One of the major side effects is short-term memory recall. That, along with the fact that the vasculitis in my brain from the sarc, which was effecting all those executive functions (problem solving, short=term memory, personality, multi-tasking) was what put me out on permanent disability.

Once we got me on the right combination of medications, and off the Ambien, some of my recall problems became less frightening.

The other huge issue was that because my thyroid, and my adrenals were blown out from the prednisone, as well as the fact that all the meds we are on deplete the B vitamins in our body-- that I needed to get myself on a daily regime of Folic Acid along with a multiple B complex.

For all of us on ANY immunosuppresant, you should also be taking 1mg of Folic Acid-- your doc can write a script, so you can use your prescription drug coverage to cover the cost--- (it's very inexpensive) but absolutely necessary.

Hope this helps,

Tracie

NS Co-owner/moderator

checking inTo: neurosarcoidosis@ yahoogroups. comDate: Wednesday, July 9, 2008, 11:53 PM

Hi all. I'm sorry I haven't responded to any posts...new or old members... cuz i haven't been feeling well. NO energy and feeling depressed. I can't seem to think straight. The other day my son was talking about when Bush ran against Kerry and I had NO recollection of that ever happening. He had to show me on the computer. Where did that year go...?! On bad days i have no memory and am even afraid of responding to people....like I could really screw up what i say or p*ss someone off. Today the roof of the building I live in(three floors) started to be reroofed. Constant ongoing noise...pounding, etc. all day. By the time they left for the day I just wanted to cry from the overstimulation. I ended up pouring myself a glass of wine...and then got a headache. It would

be funny if it wasn't so sh*tty. They'll be working on it again tomorrow and I was supposed to go out for dinner for my bday tomorrow. We'll have to see how the day goes. Marriage problems continue...if not worse. If I had to deal with fires or flooding , on top of all this cr*ap, they'd have to put me in a psych ward....no kidding. My good thoughts/prayers go out to those dealing with those problems. My doc is delirious that I've lost 70 lbs. and i guess it's cool...but I still feel like sh*t. So maybe now he'll believe me that it wasn't the weight causing the problems. I got a cat and he's been giving me lots of cat hugs and he came just at the right time cuz i sure wasn't getting any attention from 'you know who'. He's just my little shadow....lol. Well, I got all that out of me and I don't feel better for it and I probably brought you down if you've read this far. ...but maybe

you can relate to something in it. Maybe I should get some of Debbie's smoking materials or does she make brownies?... If I didn't have a landlord living right downstairs I would SO try that right about now. ...gotta go lay down again. see ya! S.

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Tracie,

I always enjoy so much when you write me back. You always make me feel so much better and not so worried about what I am going through in the moment. I want to thank you for that. I know you are probably just thinking "that's what i'm here for", but you have really helped change my life. Like Jackie (I think it was her that said this the other day) said, I have never met you but feel I know you so well. You will be a friend forever. That's why I haven't been posting right now, there is just too much going on. I know and understand every one of us is ill and stressed in our own ways, so I don't want to add to the stress. You know? I do take Ambien 10 mg every night, but have been on that for a while. That could very well, be my problem on top of the NS. I have always had a hard time slowing down and relaxing, I do need to practice that on a daily basis. I have Hypothyroidism, is that affected by the NS at all, do you know? I guess I never thought

to ask my doctor. I am taking a multiple B Complex right now along with my daily vitamin, and I also take an Omega 3/ Flaxseed Oil 3 times a day. But not the Folic Acid. I will ask my doc about it Tuesday when I go back. I hope everyone else is doing well, and hanging in there. Thank you again, Tracie. Hope you have a great weekend.

Christy

From: Solberg <mary_s777 (AT) yahoo (DOT) com>Subject: checking inTo: neurosarcoidosis@ yahoogroups. comDate: Wednesday, July 9, 2008, 11:53 PM

Hi all. I'm sorry I haven't responded to any posts...new or old members... cuz i haven't been feeling well. NO energy and feeling depressed. I can't seem to think straight. The other day my son was talking about when Bush ran against Kerry and I had NO recollection of that ever happening. He had to show me on the computer. Where did that year go...?! On bad days i have no memory and am even afraid of responding to people....like I could really screw up what i say or p*ss someone off. Today the roof of the building I live in(three floors) started to be reroofed. Constant ongoing noise...pounding, etc. all day. By the time they left for the day I just wanted to cry from the overstimulation. I ended up pouring myself a glass of wine...and then got a headache. It would

be funny if it wasn't so sh*tty. They'll be working on it again tomorrow and I was supposed to go out for dinner for my bday tomorrow. We'll have to see how the day goes. Marriage problems continue...if not worse. If I had to deal with fires or flooding , on top of all this cr*ap, they'd have to put me in a psych ward....no kidding. My good thoughts/prayers go out to those dealing with those problems. My doc is delirious that I've lost 70 lbs. and i guess it's cool...but I still feel like sh*t. So maybe now he'll believe me that it wasn't the weight causing the problems. I got a cat and he's been giving me lots of cat hugs and he came just at the right time cuz i sure wasn't getting any attention from 'you know who'. He's just my little shadow....lol. Well, I got all that out of me and I don't feel better for it and I probably brought you down if you've read this far. ...but maybe

you can relate to something in it. Maybe I should get some of Debbie's smoking materials or does she make brownies?... If I didn't have a landlord living right downstairs I would SO try that right about now. ...gotta go lay down again. see ya! S.

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Christy,

Thank you for the kind words, I too get to feeling like all of you are family, and like any family, even we have our moments--LOL!

You asked if hypothyroidism has anything to do with sarc. It can be caused by sarc granulomas on the thyroid gland itself, or if the sarc is effecting the hypothalmus, the adrenals, the pituatary, and any and all of the hormonal glands-- yep, it is going to effect the thyroid. Is it the cause of your hypothyroid-- this is a who knows-- is it the chicken or the egg question-- no one knows.

Since the parathyroids are often effected, they support the calcium absorbtion I keep wondering if those of us that have had thyroid issues (I was a SUPER hyperactive thyroid from the time I turned 12 to 18, when I had my thyroid removed) and they kept the parathyroids in place--- is that part of this whole issue of life long health issues..

It has to be interconnected, but no one knows how. Actually, the book SCHWARZBEIN PRINCIPLE- THE PROGRAM, by Schwarzbein, M.D. explains it very well. When any of the endocrinological system is effected and thrown off balance-- everything else has to adjust, and the wrong signals are getting relayed-- and we're at our bodies mercy, along with docs that don't really understand it all.

Medicine has advanced so far that we are piece-mealed, so it takes the "team" (yeah right, team means people working together...) hmmm, approach-- but rarely does one specialist like, want, or accept what the other specialists take on a situation is-- so I've found that I have to make sure to try to relay as much info to the other.. and they don't think we know shit.

(ohh, Ithink I hear some frustration...)

Anyway, SP is an excellant read, and honestly, I'm trying to follow her regime, as it seems to be making a difference--slowly, with one step forward and sometimes in reverse.

I'm babbling, sorry.

As for the Ambien-- and long term use-- it's a bitch to come off, and you will have some sleepless nights, (weeks) but I am so glad I did get off it. I had no idea how much brain fog was wrapped up with that.

One of the articles I read in Science Daily just a couple of days ago, explained that as we age (ok, I'm 51) and our hormones start declining, testosterone and estrogen for women, testo for men, that our melatonin levels also drop, and we sleep less. (Not to mention to wonderful night sweats-- power surges and then the inflammation of this disease) we find ourself sleeping with puddles of sweat on our chests (oh, that's my husband..yep, Ive lost it...) but really- past all that

I started taking a 5mg Melatonin, then had to up it to 10, now to 15mg nightly, but I am sleeping better. I do have to get up and go outside and get some daylight--- even on cloudy smoky days-- so that I can turn off the effects and get going with the day-- but it beats the brain fog.

Talk to the MD about weaning off the Ambien and you may just want to start adding Melatonin as you do this-- so that you don't go through the hell of NO sleep. (I went through a really really hard withdrawal- and I did trigger a bout of severe pain initially trying to get off the Ambien-- so be prepared, and know that it is temporary.

I'd read SP before you do anything like this so that you understand what is going on. If you can get a good endocrinologist to guide you through this-- that would be great-- there are a fairly large panel of them associated with the MD that wrote this book -- so I know you can contact them and they can guide you to someone that knows this protocol.

I'm convinced, and I have a DC that has followed this herself, and has cured her fibromyalgia. She is guiding me thru the process-- at least the parts that I can do-- as not all of it is attainable with our advanced sarc.

I've done a few posts on SP-- you can find them in the ARCHIVES.

Hugs,

Tracie

NS Co-owner/moderator

checking inTo: neurosarcoidosis@ yahoogroups. comDate: Wednesday, July 9, 2008, 11:53 PM

Hi all. I'm sorry I haven't responded to any posts...new or old members... cuz i haven't been feeling well. NO energy and feeling depressed. I can't seem to think straight. The other day my son was talking about when Bush ran against Kerry and I had NO recollection of that ever happening. He had to show me on the computer. Where did that year go...?! On bad days i have no memory and am even afraid of responding to people....like I could really screw up what i say or p*ss someone off. Today the roof of the building I live in(three floors) started to be reroofed. Constant ongoing noise...pounding, etc. all day. By the time they left for the day I just wanted to cry from the overstimulation. I ended up pouring myself a glass of wine...and then got a headache. It would

be funny if it wasn't so sh*tty. They'll be working on it again tomorrow and I was supposed to go out for dinner for my bday tomorrow. We'll have to see how the day goes. Marriage problems continue...if not worse. If I had to deal with fires or flooding , on top of all this cr*ap, they'd have to put me in a psych ward....no kidding. My good thoughts/prayers go out to those dealing with those problems. My doc is delirious that I've lost 70 lbs. and i guess it's cool...but I still feel like sh*t. So maybe now he'll believe me that it wasn't the weight causing the problems. I got a cat and he's been giving me lots of cat hugs and he came just at the right time cuz i sure wasn't getting any attention from 'you know who'. He's just my little shadow....lol. Well, I got all that out of me and I don't feel better for it and I probably brought you down if you've read this far. ...but maybe

you can relate to something in it. Maybe I should get some of Debbie's smoking materials or does she make brownies?... If I didn't have a landlord living right downstairs I would SO try that right about now. ...gotta go lay down again. see ya! S.

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Tracie,

First of all, please don't apologize for rambling on, I get so much info from you that I love to read what you write. So the more you ramble, the better it is, for me at least. My only problem with the sleep thing is, is that I am already on Ambien 10 mg, Doxepin 100mg and I take the 3 mg Melatonin...but I take 9 of them (yes with the other 2 meds). I've been taking Melatonin for years now. My doctor is telling me to get off of the melatonin, because he thinks my body is already past the point of making its own Melatonin. (because I've been taking soo many for so many years.) Its because I've been an insomniac for years now. I started out slowly on the melatonin, and just eventually worked up to where I am now. I take other meds too, that help me sleep, but are not specifically prescribed for that. Like I take Trileptal 900 mg at night, 2 mg of Xanax, Flexaril 10 mg and Topamax 50 mg at night. I have pain meds I take during the day, Vicodin 7.5/500,

Stadol Nasal Spray (which I use very sparingly), and Ibuprofen. And then all of my vitamins. I think some tims some of my lab work come back messed up because of how much medicine I am on. Who knows. The doctor has been having a hard time trying to get a handle on my thyroid for about 18 months now, constantly changing my synthroid. Why did you have to have your thryoid removed, is it because you were in complete overdrive? They have been talking about removing my goiter (sp), if they can't get it under control. I already have tons of night sweats and hot flashes still, from my hysterectomy. They still don't have my hormones under control yet. I will go back and read through some of the archives, alot of this is so new to me. And putting one health condition with the NS is still making since. Its like putting together a puzzle. My own puzzle at that. The doctors won't listen, so I am doing my own research. It's pretty interesting how NS

has caused about 95 percent of my other health conditions. Thank you, again Tracie. I appreciate it so much. Have a great day.

Hugs to you, too.

Christy

From: Solberg <mary_s777 (AT) yahoo (DOT) com>Subject: checking inTo: neurosarcoidosis@ yahoogroups. comDate: Wednesday, July 9, 2008, 11:53 PM

Hi all. I'm sorry I haven't responded to any posts...new or old members... cuz i haven't been feeling well. NO energy and feeling depressed. I can't seem to think straight. The other day my son was talking about when Bush ran against Kerry and I had NO recollection of that ever happening. He had to show me on the computer. Where did that year go...?! On bad days i have no memory and am even afraid of responding to people....like I could really screw up what i say or p*ss someone off. Today the roof of the building I live in(three floors) started to be reroofed. Constant ongoing noise...pounding, etc. all day. By the time they left for the day I just wanted to cry from the overstimulation. I ended up pouring myself a glass of wine...and then got a headache. It would

be funny if it wasn't so sh*tty. They'll be working on it again tomorrow and I was supposed to go out for dinner for my bday tomorrow. We'll have to see how the day goes. Marriage problems continue...if not worse. If I had to deal with fires or flooding , on top of all this cr*ap, they'd have to put me in a psych ward....no kidding. My good thoughts/prayers go out to those dealing with those problems. My doc is delirious that I've lost 70 lbs. and i guess it's cool...but I still feel like sh*t. So maybe now he'll believe me that it wasn't the weight causing the problems. I got a cat and he's been giving me lots of cat hugs and he came just at the right time cuz i sure wasn't getting any attention from 'you know who'. He's just my little shadow....lol. Well, I got all that out of me and I don't feel better for it and I probably brought you down if you've read this far. ...but maybe

you can relate to something in it. Maybe I should get some of Debbie's smoking materials or does she make brownies?... If I didn't have a landlord living right downstairs I would SO try that right about now. ...gotta go lay down again. see ya! S.

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LOL! Yep, Jackie that 6 pk of beer would be great, or better yet-- a double Tequila Sunrise! Ymmmm.

Now-- Christy--

You have brain fog. You are on Ambien, Trileptal, Xanax, Flexeril, Topomax, Vicodin, Ibuprofen, and melatonin.

And the one the docs worried about getting you off of is the Melatonin?????

LOL!

This is one scary world we live in. It must be because he's invested in the pharmaceutical industry stocks....

No-- really, fa-se-schush (hooked on phonics- can't spell that one)-- aside, I suspect that your brain fog is these meds-- not the sarc. Maybe the sarc on top of it all-- but hell, I was totally addicted to pain meds 18 yrs ago, Soma, Vicodin ES, Lortab, you name it-- I was taking it-- and not getting any relief. I was able to get 3 different docs to write my scripts, and they didn't know the other docs existed-- so that and working in an MD office I had access to the sample cabinet. I landed my ass in the Auburn Pain Medical Rehabilatation Center in Auburn CA and went through detox, and have been totally off pain meds for 18 yrs now! And I do have 15 Oramorph tablets here at home, I've taken 2 in the last year.

For me, it was a matter of learning the deep breathing, guided meditation, massage therapy and chiropractic that has kept me sober.

It wasn't that I was so much addicted, as I was having to self-medicate to get my pain under control, and at the same time I was managing a multi-million dollar medical practice with more than 20 employees. They had no clue I was so stoned-- and neither did I. I did know that I was going to end up dead as all the meds were throwing me into such a dark place- but that's another several chapters..

You really need to find a good endocrinologist and rheumatologist that can adjust your meds. I suspect that if you could get on a good anti-depressant, pain meds ie. Fentanyl patches (duregesic) and the right amount of synthyroid and possibly HRT patches for those sweats-- you'd be feeling so much better.

Get on to Milk Thistle-- you can do capsules or tea or both-- but it detoxs the liver-- and is incredible. No side effects, no drug interactions.

MSM powder will help with the bone and muscle pain-- and again-- no drug interactions.

3 mg of melatonin= or was that 3x9=27 mg??? You should only take it once daily about 20 min before bedtime-- and then when you get up- go outside and look skyward, get some daylight on that face-- it stops the melatonin and gets your normal good hormones flowing.

HYDRATE!!!!!!

You have to float your muscles and joints and ligaments-- and if the electrolytes are screwed up at all-- the synovial fluid in the joints is toxic and it's gonna hurt!

Imuran, Plaquenil, Methotrexate are all good to get the sarc settled down. But honestly, looking at the drugs they've got you on-- I'd be so wasted - no wonder you can't think. Your brain is toxing out just from all those mind benders.

Do know you can't wean off this stuff alone. Don't even try it! You have to take one medication at a time, and go very, very slowly. If you tried to get off to fast, or off multiple drugs at once, you'd put yourself into an adrenal crisis, and that is not a good thing. (Sorry, Martha-- some things just aren't good..)

Add some high dose Vit C- Ester C is great, and take it up to where it gives you diarrhea, and that is where you back off until that stops-- and that is the dose you need. Vit C detoxs the lymphs, and it's not comfortable, but it is a natural anti-inflammatory, and once your body starts getting what it needs, your inflammation pain decreases.

So, we have Vit B complexes to help us with the energy issues, along with moods- great antidepressant btw, Folic Acid (B12) to ward off pernicious anemia which can happen when we're on immunosupressants, Vit C for inflammation, MSM for bone and joint pain, Milk Thistle to detox the liver.

That is where you want to start. Add one thing at a time, then when you know how your body reacts over a couple of weeks, add the next. As you go up on these, you can slowly come down on some of the others.

Diet is so very, very important. Scrap the refined sugars, the sodas, the caffeine and the gluten. They all cause inflammation.

Check with the local used book stores, and get ahold of a copy of THE SCHWARZBEIN PRINCIPLE and read it. Don't get the cookbook one until you've read the program-- and have decided to make some positive changes.

I know that when I really follow the program, I'm doing ok. When I get derailed--- we all want to shoot me (please aim well) and that's ok.

This week is one where I start again, and so I've been having a few talks with Tracie (yep I have to talk to myself--Rose has been awol too long) so it's time for me to find the track again..

Small changes can make such a difference. With the challenges we all have-- we just have to be patient with ourself and take it even slower than what a "healthy" person would have to do.

Hang in there, and you will be better,

Hugs,Tracie

checking inTo: neurosarcoidosis@ yahoogroups. comDate: Wednesday, July 9, 2008, 11:53 PM

Hi all. I'm sorry I haven't responded to any posts...new or old members... cuz i haven't been feeling well. NO energy and feeling depressed. I can't seem to think straight. The other day my son was talking about when Bush ran against Kerry and I had NO recollection of that ever happening. He had to show me on the computer. Where did that year go...?! On bad days i have no memory and am even afraid of responding to people....like I could really screw up what i say or p*ss someone off. Today the roof of the building I live in(three floors) started to be reroofed. Constant ongoing noise...pounding, etc. all day. By the time they left for the day I just wanted to cry from the overstimulation. I ended up pouring myself a glass of wine...and then got a headache. It would

be funny if it wasn't so sh*tty. They'll be working on it again tomorrow and I was supposed to go out for dinner for my bday tomorrow. We'll have to see how the day goes. Marriage problems continue...if not worse. If I had to deal with fires or flooding , on top of all this cr*ap, they'd have to put me in a psych ward....no kidding. My good thoughts/prayers go out to those dealing with those problems. My doc is delirious that I've lost 70 lbs. and i guess it's cool...but I still feel like sh*t. So maybe now he'll believe me that it wasn't the weight causing the problems. I got a cat and he's been giving me lots of cat hugs and he came just at the right time cuz i sure wasn't getting any attention from 'you know who'. He's just my little shadow....lol. Well, I got all that out of me and I don't feel better for it and I probably brought you down if you've read this far. ...but maybe

you can relate to something in it. Maybe I should get some of Debbie's smoking materials or does she make brownies?... If I didn't have a landlord living right downstairs I would SO try that right about now. ...gotta go lay down again. see ya! S.

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, I've not gotten to thanking everyone for all the kind words, but I have tried to read the Daily Digest every few days. I wanted to address your medications, because there is another angle that most people (even doctors, unfortunately) are unaware of. Xanax is in a class of drugs called benzodiazepines, benzos for short. There are many good effects of benzos, but probably more negative ones. The issue I'm concerned about is the possible withdrawal from benzos while you are still taking them. I found out about this when my daughter took them. She began to have "tolerance withdrawal" symptoms, especially muscle cramps & insomnia, which her idiot doctor treated with more sedatives & muscle relaxants, which only increased the symptoms. She needed inpatient detox, as benzo withdrawal can, literally, kill you. Ambien is not a benzo, but has such similar action that it is not a good substitute. This is just a possibility I hope you will consider. Here is some info from a website called benzo buddies (I would encourage everyone to educated themselves on benzos):

Tolerance: how we become dependent

Info

Side EffectsThis is a list of possible side effects from taking benzodiazepines; it should not be considered as complete. You should seek medical attention if you are suffering from any of these symptoms.

Drowsiness Dizziness Unsteadiness Clumsiness Weakness Lethargy Fatigue Depression Confusion Memory impairment Headache Sleep disturbances, insomnia Slurred speech Anxiety Increased nervousness, excitability, or irritability Behavioural changes Difficulty concentrating Hallucinations Muscle spasms Skin rashes Constipation Nausea Muscle weakness Tremor Changes in libido Urinary retention or incontinence Low blood pressure

As mentioned previously, "tolerance" is a term used to describe the situation where your original effective dose becomes ineffective. For your medication to again be effective, you must do one of two things: either you supply your body with an increased dose of medication, or you must perform a taper - break - reinstatement program. In the first situation, your doctor would need to prescribe a higher dose of your benzodiazepine. This will result only in a temporary fix. At some point in time, your new higher dose will again become ineffective. Perhaps yet another increase in dosage will be suggested - where will it all end? In the second situation, you must taper off your benzo, take a break, and then reinstate your medication. Even if you were to attempt an accelerated withdrawal, break, and reinstatement program, it could still take months to complete. And the end result will be the same, at some point in time you will be faced with tolerance once more. Do you again go through this kind of program? Sooner or later, if you are to lead a normal life, you must withdraw completely. You can put an end to the vicious cycle that tolerance begins; you can make the decision to withdraw sooner rather than later.

You should also consider that more doctors are becoming aware of the problems and dangers associated with protracted benzodiazepine use. They are beginning to realise that they owe it to their patients to help them taper off benzos. However, there will always be doctors who do not truly understand the issues surrounding benzodiazepine withdrawal. These doctors may force their patients to withdraw at a rate they cannot tolerate. All doctors have a duty of care, and it will become more evident (as it is only a matter of time before there are successful lawsuits) that they risk being sued if they continue to blindly prescribe benzodiazepines, against best practice, and without regard to patients long-term interests and health. It is going to become increasingly difficult to find a doctor that will prescribe these meds for insomnia, anxiety, and panic. Take control of your health now; it is never too late! It is your body!

Tolerance Withdrawal

The term "Tolerance" describes the situation where your brain has become accustomed to the action of the benzodiazepine and will now need more of the drug to maintain the same degree of action. It is a well-known fact that if you take a benzodiazepine on a regular basis and for an extended period of time, you will at some point experience tolerance. (Read the previous section, above, for more about "tolerance").

When you experience tolerance, you may begin to suffer from symptoms of withdrawal. You have not actually begun to taper off the benzodiazepine, but your body signals say that you are. Because your brain has developed a tolerance to the drug and is requiring more to produce the same effect, and because you have not increased your dose to keep up, your brain sees it as less than adequate, in essence withdrawing from the necessary dose of the drug to maintain action.

The symptoms of "Tolerance Withdrawal" can be confusing. Often one will assume that their condition is simply getting worse. Most doctors do not inform their patients that once they achieve tolerance they may start to experience symptoms of withdrawal, or even that such a problem can occur. But then again, it would seem that many doctors themselves are unaware of this potential problem.

If you begin to experience Tolerance Withdrawal, your doctor may decide that you should undergo a battery of tests, as both they and their patients are usually unaware of potential Tolerance Withdrawal problems. It is not uncommon for MRIs, CT scans, blood-work and numerous other tests to be carried out. While it is always prudent to check out new symptoms, if the symptoms are the result of Tolerance Withdrawal, the patient is left with a "we found nothing to explain your symptoms" result. This is certainly good news in terms of your general health, but can leave you questioning your own sanity: "How can I be feeling so awful and yet nothing is wrong"?

The usual course of action by a doctor is to simply increase the dose of the benzodiazepine, possibly add a second benzodiazepine, or perhaps even add another medication to the mix such as an antidepressant. This may be a temporary "fix" for the problem, but inevitably tolerance to the new dose will again be achieved, and you will most probably once more face symptoms of withdrawal. You can again up your dose and perpetuate this vicious circle, or you can choose to stabilize your dose and begin a proper withdrawal taper. - Which sounds better to you?

Info

Withdrawal Effects

This list is of possible symptoms; not a list of what you will suffer from during withdrawal. You are unlikely to experience more than a few of these symptoms during withdrawal, and may experience none at all. Some of these symptoms are reported from anecdotal evidence and may be spurious. All of these symptoms can have causes other than withdrawal from benzodiazepines. It is important for you to discuss any new symptoms with your doctor.

Most Common

Physical:

Muscle pain

Psychological:

Anxiety Depression Insomnia

Less Common

Physical:

Gastrointestinal problems (may include abdominal pain or cramps, and distension) Visual disturbances (blurred vision, hypersensitivity to light, seeing spots, sore eyes, dry eyes) Headaches (may include feelings of tightness in head) Flu-like symptoms (fatigue, lethargy, weakness) Sweating Pain in neck and shoulders, teeth and jaw Limbs feel heavy Balance problems, dizziness, unsteadiness, loss of coordination Shaking Feelings of tightness in chest, breathing difficulties, palpations, inner trembling

Psychological:

Phobias (most common are agoraphobia, social phobia, and the fear of going mad) Panic attacks Rapid mood swings Restlessness, jumpiness Loss of memory, trouble concentrating Nightmares Irritability Derealisation (feelings of unreality, changes is perception)

Least common

Physical:

Changes in appetite, weight gain or loss Constipation, diarrhoea, vomiting Difficulty swallowing, increased saliva, loss of taste or metallic taste, sore mouth and tongue, dry mouth Craving of sweet foods Tinnitus (ringing in ears) Menstrual changes Changes in libido Urinary problems (frequency, urgency) Skin rashes, itchy skin, dry skin, slow healing of wounds Painful scalp Feelings of 'pins and needles' , tingling or numbness in arms, legs, face or trunk Hypersensitivity to sounds Hyperactivity Speech difficulties Rapid changes in body temperature

Psychological:

Depersonalisation (feeling like you don't know who you are) Hallucinations Feeling suddenly aggressive or full of rage Paranoia Intrusive thoughts or memories Morbid thoughts, suicidal thoughts Unusually sensitive (such as to reading or watching news stories)

I hope to write more to the group soon. Ramblin' Rose

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Rose,a

Thank you so very much for this article-- it is a keeper! Love ya lady,

Tracie

Re: Depression, short-term memory issues

, I've not gotten to thanking everyone for all the kind words, but I have tried to read the Daily Digest every few days. I wanted to address your medications, because there is another angle that most people (even doctors, unfortunately) are unaware of. Xanax is in a class of drugs called benzodiazepines, benzos for short. There are many good effects of benzos, but probably more negative ones. The issue I'm concerned about is the possible withdrawal from benzos while you are still taking them. I found out about this when my daughter took them. She began to have "tolerance withdrawal" symptoms, especially muscle cramps & insomnia, which her idiot doctor treated with more sedatives & muscle relaxants, which only increased the symptoms. She needed inpatient detox, as benzo withdrawal can, literally, kill you. Ambien is not a benzo, but has such similar action that it is not a good

substitute. This is just a possibility I hope you will consider. Here is some info from a website called benzo buddies (I would encourage everyone to educated themselves on benzos):

Tolerance: how we become dependent

Info

Side EffectsThis is a list of possible side effects from taking benzodiazepines; it should not be considered as complete. You should seek medical attention if you are suffering from any of these symptoms.

Drowsiness Dizziness Unsteadiness Clumsiness Weakness Lethargy Fatigue Depression Confusion Memory impairment Headache Sleep disturbances, insomnia Slurred speech Anxiety Increased nervousness, excitability, or irritability Behavioural changes Difficulty concentrating Hallucinations Muscle spasms Skin rashes Constipation Nausea Muscle weakness Tremor Changes in libido Urinary retention or incontinence Low blood pressure

As mentioned previously, "tolerance" is a term used to describe the situation where your original effective dose becomes ineffective. For your medication to again be effective, you must do one of two things: either you supply your body with an increased dose of medication, or you must perform a taper - break - reinstatement program. In the first situation, your doctor would need to prescribe a higher dose of your benzodiazepine. This will result only in a temporary fix. At some point in time, your new higher dose will again become ineffective. Perhaps yet another increase in dosage will be suggested - where will it all end? In the second situation, you must taper off your benzo, take a break, and then reinstate your medication. Even if you were to attempt an accelerated withdrawal, break, and reinstatement program, it could still take months to complete. And the end result will be the same, at some point in time you will be faced with

tolerance once more. Do you again go through this kind of program? Sooner or later, if you are to lead a normal life, you must withdraw completely. You can put an end to the vicious cycle that tolerance begins; you can make the decision to withdraw sooner rather than later.

You should also consider that more doctors are becoming aware of the problems and dangers associated with protracted benzodiazepine use. They are beginning to realise that they owe it to their patients to help them taper off benzos. However, there will always be doctors who do not truly understand the issues surrounding benzodiazepine withdrawal. These doctors may force their patients to withdraw at a rate they cannot tolerate. All doctors have a duty of care, and it will become more evident (as it is only a matter of time before there are successful lawsuits) that they risk being sued if they continue to blindly prescribe benzodiazepines, against best practice, and without regard to patients long-term interests and health. It is going to become increasingly difficult to find a doctor that will prescribe these meds for insomnia, anxiety, and panic. Take control of your health now; it is never too late! It is your body!

Tolerance Withdrawal

The term "Tolerance" describes the situation where your brain has become accustomed to the action of the benzodiazepine and will now need more of the drug to maintain the same degree of action. It is a well-known fact that if you take a benzodiazepine on a regular basis and for an extended period of time, you will at some point experience tolerance. (Read the previous section, above, for more about "tolerance") .

When you experience tolerance, you may begin to suffer from symptoms of withdrawal. You have not actually begun to taper off the benzodiazepine, but your body signals say that you are. Because your brain has developed a tolerance to the drug and is requiring more to produce the same effect, and because you have not increased your dose to keep up, your brain sees it as less than adequate, in essence withdrawing from the necessary dose of the drug to maintain action.

The symptoms of "Tolerance Withdrawal" can be confusing. Often one will assume that their condition is simply getting worse. Most doctors do not inform their patients that once they achieve tolerance they may start to experience symptoms of withdrawal, or even that such a problem can occur. But then again, it would seem that many doctors themselves are unaware of this potential problem.

If you begin to experience Tolerance Withdrawal, your doctor may decide that you should undergo a battery of tests, as both they and their patients are usually unaware of potential Tolerance Withdrawal problems. It is not uncommon for MRIs, CT scans, blood-work and numerous other tests to be carried out. While it is always prudent to check out new symptoms, if the symptoms are the result of Tolerance Withdrawal, the patient is left with a "we found nothing to explain your symptoms" result. This is certainly good news in terms of your general health, but can leave you questioning your own sanity: "How can I be feeling so awful and yet nothing is wrong"?

The usual course of action by a doctor is to simply increase the dose of the benzodiazepine, possibly add a second benzodiazepine, or perhaps even add another medication to the mix such as an antidepressant. This may be a temporary "fix" for the problem, but inevitably tolerance to the new dose will again be achieved, and you will most probably once more face symptoms of withdrawal. You can again up your dose and perpetuate this vicious circle, or you can choose to stabilize your dose and begin a proper withdrawal taper. - Which sounds better to you?

Info

Withdrawal Effects

This list is of possible symptoms; not a list of what you will suffer from during withdrawal. You are unlikely to experience more than a few of these symptoms during withdrawal, and may experience none at all. Some of these symptoms are reported from anecdotal evidence and may be spurious. All of these symptoms can have causes other than withdrawal from benzodiazepines. It is important for you to discuss any new symptoms with your doctor.

Most Common

Physical:

Muscle pain

Psychological:

Anxiety Depression Insomnia

Less Common

Physical:

Gastrointestinal problems (may include abdominal pain or cramps, and distension) Visual disturbances (blurred vision, hypersensitivity to light, seeing spots, sore eyes, dry eyes) Headaches (may include feelings of tightness in head) Flu-like symptoms (fatigue, lethargy, weakness) Sweating Pain in neck and shoulders, teeth and jaw Limbs feel heavy Balance problems, dizziness, unsteadiness, loss of coordination Shaking Feelings of tightness in chest, breathing difficulties, palpations, inner trembling

Psychological:

Phobias (most common are agoraphobia, social phobia, and the fear of going mad) Panic attacks Rapid mood swings Restlessness, jumpiness Loss of memory, trouble concentrating Nightmares Irritability Derealisation (feelings of unreality, changes is perception)

Least common

Physical:

Changes in appetite, weight gain or loss Constipation, diarrhoea, vomiting Difficulty swallowing, increased saliva, loss of taste or metallic taste, sore mouth and tongue, dry mouth Craving of sweet foods Tinnitus (ringing in ears) Menstrual changes Changes in libido Urinary problems (frequency, urgency) Skin rashes, itchy skin, dry skin, slow healing of wounds Painful scalp Feelings of 'pins and needles' , tingling or numbness in arms, legs, face or trunk Hypersensitivity to sounds Hyperactivity Speech difficulties Rapid changes in body temperature

Psychological:

Depersonalisation (feeling like you don't know who you are) Hallucinations Feeling suddenly aggressive or full of rage Paranoia Intrusive thoughts or memories Morbid thoughts, suicidal thoughts Unusually sensitive (such as to reading or watching news stories)

I hope to write more to the group soon. Ramblin' Rose

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Rose,

Thank you for the article, I have been through benzo addiction back in 1998. It was hell. They ended up slowly putting me back on them in 2001, for my anxiety and panic attacks. The paxil and prozac, and antidepressants weren't helping to control my anxiety or helping me sleep. But, I could go into a long story on how and why I am where I am at today, but I don't think you want to hear that. It's just this whole tongue thing has me very nervous, so I have been taking my full 3 mg a day of Xanax, otherwise I just usually take 2 mg a day. I know where my line of addiction is these days, and I try to stay away from it. That 5 days of inpatient detoxing was hell, and I will never go back to that again. But thank you, again, for the article and concern.

Christy

Subject: Re: Depression, short-term memory issuesTo: Neurosarcoidosis Date: Friday, July 25, 2008, 6:15 PM

, I've not gotten to thanking everyone for all the kind words, but I have tried to read the Daily Digest every few days. I wanted to address your medications, because there is another angle that most people (even doctors, unfortunately) are unaware of. Xanax is in a class of drugs called benzodiazepines, benzos for short. There are many good effects of benzos, but probably more negative ones. The issue I'm concerned about is the possible withdrawal from benzos while you are still taking them. I found out about this when my daughter took them. She began to have "tolerance withdrawal" symptoms, especially muscle cramps & insomnia, which her idiot doctor treated with more sedatives & muscle relaxants, which only increased the symptoms. She needed inpatient detox, as benzo withdrawal can, literally, kill you. Ambien is not a benzo, but has such similar action that it is not a good

substitute. This is just a possibility I hope you will consider. Here is some info from a website called benzo buddies (I would encourage everyone to educated themselves on benzos):

Tolerance: how we become dependent

Info

Side EffectsThis is a list of possible side effects from taking benzodiazepines; it should not be considered as complete. You should seek medical attention if you are suffering from any of these symptoms.

Drowsiness Dizziness Unsteadiness Clumsiness Weakness Lethargy Fatigue Depression Confusion Memory impairment Headache Sleep disturbances, insomnia Slurred speech Anxiety Increased nervousness, excitability, or irritability Behavioural changes Difficulty concentrating Hallucinations Muscle spasms Skin rashes Constipation Nausea Muscle weakness Tremor Changes in libido Urinary retention or incontinence Low blood pressure

As mentioned previously, "tolerance" is a term used to describe the situation where your original effective dose becomes ineffective. For your medication to again be effective, you must do one of two things: either you supply your body with an increased dose of medication, or you must perform a taper - break - reinstatement program. In the first situation, your doctor would need to prescribe a higher dose of your benzodiazepine. This will result only in a temporary fix. At some point in time, your new higher dose will again become ineffective. Perhaps yet another increase in dosage will be suggested - where will it all end? In the second situation, you must taper off your benzo, take a break, and then reinstate your medication. Even if you were to attempt an accelerated withdrawal, break, and reinstatement program, it could still take months to complete. And the end result will be the same, at some point in time you will be faced with

tolerance once more. Do you again go through this kind of program? Sooner or later, if you are to lead a normal life, you must withdraw completely. You can put an end to the vicious cycle that tolerance begins; you can make the decision to withdraw sooner rather than later.

You should also consider that more doctors are becoming aware of the problems and dangers associated with protracted benzodiazepine use. They are beginning to realise that they owe it to their patients to help them taper off benzos. However, there will always be doctors who do not truly understand the issues surrounding benzodiazepine withdrawal. These doctors may force their patients to withdraw at a rate they cannot tolerate. All doctors have a duty of care, and it will become more evident (as it is only a matter of time before there are successful lawsuits) that they risk being sued if they continue to blindly prescribe benzodiazepines, against best practice, and without regard to patients long-term interests and health. It is going to become increasingly difficult to find a doctor that will prescribe these meds for insomnia, anxiety, and panic. Take control of your health now; it is never too late! It is your body!

Tolerance Withdrawal

The term "Tolerance" describes the situation where your brain has become accustomed to the action of the benzodiazepine and will now need more of the drug to maintain the same degree of action. It is a well-known fact that if you take a benzodiazepine on a regular basis and for an extended period of time, you will at some point experience tolerance. (Read the previous section, above, for more about "tolerance") .

When you experience tolerance, you may begin to suffer from symptoms of withdrawal. You have not actually begun to taper off the benzodiazepine, but your body signals say that you are. Because your brain has developed a tolerance to the drug and is requiring more to produce the same effect, and because you have not increased your dose to keep up, your brain sees it as less than adequate, in essence withdrawing from the necessary dose of the drug to maintain action.

The symptoms of "Tolerance Withdrawal" can be confusing. Often one will assume that their condition is simply getting worse. Most doctors do not inform their patients that once they achieve tolerance they may start to experience symptoms of withdrawal, or even that such a problem can occur. But then again, it would seem that many doctors themselves are unaware of this potential problem.

If you begin to experience Tolerance Withdrawal, your doctor may decide that you should undergo a battery of tests, as both they and their patients are usually unaware of potential Tolerance Withdrawal problems. It is not uncommon for MRIs, CT scans, blood-work and numerous other tests to be carried out. While it is always prudent to check out new symptoms, if the symptoms are the result of Tolerance Withdrawal, the patient is left with a "we found nothing to explain your symptoms" result. This is certainly good news in terms of your general health, but can leave you questioning your own sanity: "How can I be feeling so awful and yet nothing is wrong"?

The usual course of action by a doctor is to simply increase the dose of the benzodiazepine, possibly add a second benzodiazepine, or perhaps even add another medication to the mix such as an antidepressant. This may be a temporary "fix" for the problem, but inevitably tolerance to the new dose will again be achieved, and you will most probably once more face symptoms of withdrawal. You can again up your dose and perpetuate this vicious circle, or you can choose to stabilize your dose and begin a proper withdrawal taper. - Which sounds better to you?

Info

Withdrawal Effects

This list is of possible symptoms; not a list of what you will suffer from during withdrawal. You are unlikely to experience more than a few of these symptoms during withdrawal, and may experience none at all. Some of these symptoms are reported from anecdotal evidence and may be spurious. All of these symptoms can have causes other than withdrawal from benzodiazepines. It is important for you to discuss any new symptoms with your doctor.

Most Common

Physical:

Muscle pain

Psychological:

Anxiety Depression Insomnia

Less Common

Physical:

Gastrointestinal problems (may include abdominal pain or cramps, and distension) Visual disturbances (blurred vision, hypersensitivity to light, seeing spots, sore eyes, dry eyes) Headaches (may include feelings of tightness in head) Flu-like symptoms (fatigue, lethargy, weakness) Sweating Pain in neck and shoulders, teeth and jaw Limbs feel heavy Balance problems, dizziness, unsteadiness, loss of coordination Shaking Feelings of tightness in chest, breathing difficulties, palpations, inner trembling

Psychological:

Phobias (most common are agoraphobia, social phobia, and the fear of going mad) Panic attacks Rapid mood swings Restlessness, jumpiness Loss of memory, trouble concentrating Nightmares Irritability Derealisation (feelings of unreality, changes is perception)

Least common

Physical:

Changes in appetite, weight gain or loss Constipation, diarrhoea, vomiting Difficulty swallowing, increased saliva, loss of taste or metallic taste, sore mouth and tongue, dry mouth Craving of sweet foods Tinnitus (ringing in ears) Menstrual changes Changes in libido Urinary problems (frequency, urgency) Skin rashes, itchy skin, dry skin, slow healing of wounds Painful scalp Feelings of 'pins and needles' , tingling or numbness in arms, legs, face or trunk Hypersensitivity to sounds Hyperactivity Speech difficulties Rapid changes in body temperature

Psychological:

Depersonalisation (feeling like you don't know who you are) Hallucinations Feeling suddenly aggressive or full of rage Paranoia Intrusive thoughts or memories Morbid thoughts, suicidal thoughts Unusually sensitive (such as to reading or watching news stories)

I hope to write more to the group soon. Ramblin' Rose

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I also wanted to add, the time that I was talking about in 1998 was when I was having my psedutumor cerebri headaches. Between my Family doc, my neuro, my opthamologist, and my neuro opthamologist, I was on a combination of about 6-7 prescribtion narcotics. I was on a lot of pain medicine and sleeping pills. To look back on that time in my life was scary. But I thought I would clarify that.

Christy

From: Rose <mamadogrose@ hotmail.com>Subject: Re: Depression, short-term memory issuesTo: Neurosarcoidosis@ yahoogroups. comDate: Friday, July 25, 2008, 6:15 PM

, I've not gotten to thanking everyone for all the kind words, but I have tried to read the Daily Digest every few days. I wanted to address your medications, because there is another angle that most people (even doctors, unfortunately) are unaware of. Xanax is in a class of drugs called benzodiazepines, benzos for short. There are many good effects of benzos, but probably more negative ones. The issue I'm concerned about is the possible withdrawal from benzos while you are still taking them. I found out about this when my daughter took them. She began to have "tolerance withdrawal" symptoms, especially muscle cramps & insomnia, which her idiot doctor treated with more sedatives & muscle relaxants, which only increased the symptoms. She needed inpatient detox, as benzo withdrawal can, literally, kill you. Ambien is not a benzo, but has such similar action that it is not a good

substitute. This is just a possibility I hope you will consider. Here is some info from a website called benzo buddies (I would encourage everyone to educated themselves on benzos):

Tolerance: how we become dependent

Info

Side EffectsThis is a list of possible side effects from taking benzodiazepines; it should not be considered as complete. You should seek medical attention if you are suffering from any of these symptoms.

Drowsiness Dizziness Unsteadiness Clumsiness Weakness Lethargy Fatigue Depression Confusion Memory impairment Headache Sleep disturbances, insomnia Slurred speech Anxiety Increased nervousness, excitability, or irritability Behavioural changes Difficulty concentrating Hallucinations Muscle spasms Skin rashes Constipation Nausea Muscle weakness Tremor Changes in libido Urinary retention or incontinence Low blood pressure

As mentioned previously, "tolerance" is a term used to describe the situation where your original effective dose becomes ineffective. For your medication to again be effective, you must do one of two things: either you supply your body with an increased dose of medication, or you must perform a taper - break - reinstatement program. In the first situation, your doctor would need to prescribe a higher dose of your benzodiazepine. This will result only in a temporary fix. At some point in time, your new higher dose will again become ineffective. Perhaps yet another increase in dosage will be suggested - where will it all end? In the second situation, you must taper off your benzo, take a break, and then reinstate your medication. Even if you were to attempt an accelerated withdrawal, break, and reinstatement program, it could still take months to complete. And the end result will be the same, at some point in time you will be faced with

tolerance once more. Do you again go through this kind of program? Sooner or later, if you are to lead a normal life, you must withdraw completely. You can put an end to the vicious cycle that tolerance begins; you can make the decision to withdraw sooner rather than later.

You should also consider that more doctors are becoming aware of the problems and dangers associated with protracted benzodiazepine use. They are beginning to realise that they owe it to their patients to help them taper off benzos. However, there will always be doctors who do not truly understand the issues surrounding benzodiazepine withdrawal. These doctors may force their patients to withdraw at a rate they cannot tolerate. All doctors have a duty of care, and it will become more evident (as it is only a matter of time before there are successful lawsuits) that they risk being sued if they continue to blindly prescribe benzodiazepines, against best practice, and without regard to patients long-term interests and health. It is going to become increasingly difficult to find a doctor that will prescribe these meds for insomnia, anxiety, and panic. Take control of your health now; it is never too late! It is your body!

Tolerance Withdrawal

The term "Tolerance" describes the situation where your brain has become accustomed to the action of the benzodiazepine and will now need more of the drug to maintain the same degree of action. It is a well-known fact that if you take a benzodiazepine on a regular basis and for an extended period of time, you will at some point experience tolerance. (Read the previous section, above, for more about "tolerance") .

When you experience tolerance, you may begin to suffer from symptoms of withdrawal. You have not actually begun to taper off the benzodiazepine, but your body signals say that you are. Because your brain has developed a tolerance to the drug and is requiring more to produce the same effect, and because you have not increased your dose to keep up, your brain sees it as less than adequate, in essence withdrawing from the necessary dose of the drug to maintain action.

The symptoms of "Tolerance Withdrawal" can be confusing. Often one will assume that their condition is simply getting worse. Most doctors do not inform their patients that once they achieve tolerance they may start to experience symptoms of withdrawal, or even that such a problem can occur. But then again, it would seem that many doctors themselves are unaware of this potential problem.

If you begin to experience Tolerance Withdrawal, your doctor may decide that you should undergo a battery of tests, as both they and their patients are usually unaware of potential Tolerance Withdrawal problems. It is not uncommon for MRIs, CT scans, blood-work and numerous other tests to be carried out. While it is always prudent to check out new symptoms, if the symptoms are the result of Tolerance Withdrawal, the patient is left with a "we found nothing to explain your symptoms" result. This is certainly good news in terms of your general health, but can leave you questioning your own sanity: "How can I be feeling so awful and yet nothing is wrong"?

The usual course of action by a doctor is to simply increase the dose of the benzodiazepine, possibly add a second benzodiazepine, or perhaps even add another medication to the mix such as an antidepressant. This may be a temporary "fix" for the problem, but inevitably tolerance to the new dose will again be achieved, and you will most probably once more face symptoms of withdrawal. You can again up your dose and perpetuate this vicious circle, or you can choose to stabilize your dose and begin a proper withdrawal taper. - Which sounds better to you?

Info

Withdrawal Effects

This list is of possible symptoms; not a list of what you will suffer from during withdrawal. You are unlikely to experience more than a few of these symptoms during withdrawal, and may experience none at all. Some of these symptoms are reported from anecdotal evidence and may be spurious. All of these symptoms can have causes other than withdrawal from benzodiazepines. It is important for you to discuss any new symptoms with your doctor.

Most Common

Physical:

Muscle pain

Psychological:

Anxiety Depression Insomnia

Less Common

Physical:

Gastrointestinal problems (may include abdominal pain or cramps, and distension) Visual disturbances (blurred vision, hypersensitivity to light, seeing spots, sore eyes, dry eyes) Headaches (may include feelings of tightness in head) Flu-like symptoms (fatigue, lethargy, weakness) Sweating Pain in neck and shoulders, teeth and jaw Limbs feel heavy Balance problems, dizziness, unsteadiness, loss of coordination Shaking Feelings of tightness in chest, breathing difficulties, palpations, inner trembling

Psychological:

Phobias (most common are agoraphobia, social phobia, and the fear of going mad) Panic attacks Rapid mood swings Restlessness, jumpiness Loss of memory, trouble concentrating Nightmares Irritability Derealisation (feelings of unreality, changes is perception)

Least common

Physical:

Changes in appetite, weight gain or loss Constipation, diarrhoea, vomiting Difficulty swallowing, increased saliva, loss of taste or metallic taste, sore mouth and tongue, dry mouth Craving of sweet foods Tinnitus (ringing in ears) Menstrual changes Changes in libido Urinary problems (frequency, urgency) Skin rashes, itchy skin, dry skin, slow healing of wounds Painful scalp Feelings of 'pins and needles' , tingling or numbness in arms, legs, face or trunk Hypersensitivity to sounds Hyperactivity Speech difficulties Rapid changes in body temperature

Psychological:

Depersonalisation (feeling like you don't know who you are) Hallucinations Feeling suddenly aggressive or full of rage Paranoia Intrusive thoughts or memories Morbid thoughts, suicidal thoughts Unusually sensitive (such as to reading or watching news stories)

I hope to write more to the group soon. Ramblin' Rose

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