Sufferer Brain zaps and other things

[squeakyboots]

So it has been 6 days and still no Diazepam refill from the shrink. That's the benzo I'm on and I haven't taken a dose since Monday and I can tell you I am not feeling good at all. I had called on Friday 16th to ask for a refill because I had a few pills left -- had I not cut the dosage in half I'd be twice as messed up probably, because I would have gone from 10mg to zero. This way I went from 5mg to zero, still awful but better?? I got a call back Monday saying they would send the refill over that day or the next. It wasn't sent that day. It got sent on Tuesday but incompletely -- the amount to dispense was not specified. The office was closed Wednesday. The pharmacy left the shrink's office a VM on Tuesday at 3pm. I begged the pharmacy to at least give me a couple of days worth of pills to get me through until they got what they needed from the shrink but they refused informing me that it was a controlled substance and they could not give me any. Okay -but when I spoke to the psychiatrist on call on Sunday 18th she told me the pharmacy could give me a few days worth. I called NAMI and spoke with them yesterday and they told me the same thing. Well, it's not true, because I called my pharmacy again and they refused. It's Thursday today. I have yet to hear back from the shrink's office.

On Monday when I spoke with the receptionist (assistant?) I asked her to please let the doctor know I had cut my dosages in half and am trying to taper off and I need her to be aware of that, and I wanted her to guide me off of them. I understand that shrinks often won't talk about meds over the phone (mine won't either, like you @lostforgottensoul) but I had to at least let her know. I got no response.

Guys I apologize if I'm all over the place, but I hope you get the gist of what I'm saying. I have had no diazepam since Monday. I've done a lot of reading about benzo withdrawals and they're mostly horror stories. I don't know if I should get back on the 5mg and then begin tapering off very slowly, or just keep going cold turkey since that's pretty much was I was forced to do, and just stick it out?? I haven't slept all week. I need diazepam to sleep. I don't know what to do. I will speak to my psychiatrist today but I'd really like to hear your thoughts, especially since you know much more than I do about this. I will update you once I know more. Thank you guys, I appreciate all your feedback.

Also -- regarding the other meds -- I still plan to keep tapering off them like I have been (hopefully with the shrink's blessing??) and go down from the current 50mg to 25mg with the Sertraline and Lamotrigine in a week or so and then stay there for about 4 weeks then be done. I have read that even though they are not habit-forming they still have awful withdrawal symptoms. I guess we'll see how it goes for me, I know everybody is different. The oxcarbazepine is my least worry, I was put on that to help me sleep (not for seizures) and it's useless without the diazepam.

@Friday I tried consulting the local hospital but I kept getting transferred all over the place and I was getting nowhere. I ended up calling my GP to ask for a couple of pills and he refused, saying it was a controlled substance. (Not sure if GPs are allowed to prescribe those). But yeah, any attempt of getting 10mg to hold me over was absolutely futile.

 

[Riot]

That's really rough. I was in the same position with a controlled substance once, and I ended up going to the emergency room. It was ugly, but they gave me a temporary prescription.

 

[squeakyboots]

That's really rough. I was in the same position with a controlled substance once, and I ended up going to the emergency room. It was ugly, but they gave me a temporary prescription.

@Riot oh no :( I'm sorry that happened to you. Good that they gave you a prescription. Mine finally got sent over and is ready for pick up.

HOWEVER....... I have been thinking. I don't sleep without Diazepam, that is true. In fact, NOTHING the shrink ever prescribed for sleeping that is actually meant for sleeping (Ambien, Lunesta, Trazodone, Ativan) worked for me, they either had the opposite effect or did nothing at all. But good old Benadryl worked like a charm. God, I remember how happy I was to start feeling drowsy and sleepy and go right to sleep. But she said to stop taking Benadryl because I was using it for too long and it was not meant as a sleep aid (granted, I used it for a few months) and put me on Diazepam after a bunch of other meds had no effect. Well, it worked. But as far as I know, diazepam is not meant for long-term use either.

The point is -- I can either go the distance and stick it out, since I'm already cold turkey. I can get some Benadryl, start sleeping and continue cold turkey. OR I can go pick up the pills, take 5mg tonight at bedtime and start over, tapering off slowly. My shrink has not responded to my tapering off. I will need to decide in 5 hours what I'm going to do. I agree this would best be done under medical supervision but I am unable to get any!!!

P.S. Thank you to the moderator who cleaned up all my posts!

 

[Justmehere]

As a long term plan, I'd suggest considering seeing a sleep med doc. I went through a time of terrible insomnia, and no regular meds worked, but the sleep med doc (and they are dual trained in sleep and psychiatry) saved my sleep, and thus probably my life. He knew of ways to treat what was going on that none of the psychiatrists thought about.

Suddenly stopping many of these meds can actually cause seizures in someone without a seizure disorder and sooo many other problems. I get it though. You are stuck between a rock and a hard place.

If the doc isn't listening to you so much that you are willing to put your life in danger to go cold turkey, put your concerns in writing to the doctor. You write well, even though it's super clear you are really anxious as spinning a bit.

Be super professional. Don't accuse or demand. State what the problem is. State what you feel like are your only options right now. Ask for their advice --- "what do you suggest I do?" Then leave your info on how they can contact you.

Email it through a patient portal or fax it to them. Create a written record of your concerns and request for their suggestions. It usually gets a doctor's attention. Also copy your psychologist and GP on it, and keep them in the loop that way.

This is important: don't tell them what you think should be done - ask them what they would advise doing. I think you may get further this way than begging for more of a controlled substance. I think people are pushing back because you are unintentionally coming across as a "drug seeking" patient when your actions to try to manage this are understandable and reasonable. So turn the tables on them a bit and say ok, then what do I do?

Also, ask your GP for help finding a better psychiatrist. They shouldn't be losing you up on benzos and then leaving you hung out to dry with gaps like this, or unwilling to help taper you off...

Look into vistaril/hydroxyzine. This is a med your GP might be willing to consider because it's not controlled, it is an antihistamine like Benadryl, and a somewhat common replacement for benzos and can help someone as they taper off benzos.

And breathe deeply. No really, look up every deep breathing excerise you can find. An ER doc taught me 4 square breathing. Super easy. Breathe in 4 seconds, hold 4 seconds, and put 4 seconds repeat 4 times. Taking deep breaths can help get through the brain and body being chemically off kilter. It helps signal the parasympathetic nervous system to release chemicals to slow down. No, it's unlikely to be enough, but it might help you endure this tough spot.

And if none of this is helpful, feel free to disregard. Hang in there!

 

[Djw81]

The brain zaps are caused by fluctuations in your seratonin levels.

I tried going off effexor cold turkey. Not a good idea. It started with brain zaps that felt like I was putting my finger in a powerpoint followed by cutting my face with a hunting knife and then lying in a bath tub ready to do my wrists before a friend came to my house at that exact time and saved me.
I ended up taking seroquel to knock myself out to get me past the huge wave of emotion which I now now is from noradrenaline released with the fight or flight response.
To get off the effexor I had to gradually decrease the dose over 2 months with brain zaps all the way.

 

[squeakyboots]

As a long term plan, I'd suggest considering seeing a sleep med doc.

I've been wanting to do this for a long time. I just never had the means. I might be able to now. I just don't want to be dependent on any medication again. Did you have to go on medication and how long was your treatment?

If the doc isn't listening to you so much that you are willing to put your life in danger to go cold turkey, put your concerns in writing to the doctor.

I would, except there is no e-mail address available. It's fine, though. I won't be seeing her again.

Also, ask your GP for help finding a better psychiatrist.

I left a voice mail Wednesday for a psychiatrist at a hospital, referred by SAMHSA. I haven't heard back. It's okay though -- I am going to be in control of my tapering/cold turkey. I don't have the mental energy to incessantly be pulling on anyone's sleeve for acknowledgement. I have braced myself and I can do this.

Look into vistaril/hydroxyzine. This is a med your GP might be willing to consider because it's not controlled, it is an antihistamine like Benadryl, and a somewhat common replacement for benzos and can help someone as they taper off benzos.

I got some Benadryl yesterday and treated myself to some rest, finally. I decided to continue the cold turkey with the benzo.

And breathe deeply.

I couldn't agree more. When I realized I was being pushed into cold turkey, I decided I was going to devote my time to yoga, breathing, meditation, and grounding. For however long it takes. Breathing deep into the diaphragm really does wonders.

And if none of this is helpful, feel free to disregard. Hang in there!

Thank you for taking the time to respond :) I will hang in there!

 

[squeakyboots]

The brain zaps are caused by fluctuations in your seratonin levels.

I tried going off effexor cold turkey. Not a good...

That sounds awful, I'm so sorry. I found that fish oil helps tremendously with brain zaps. I read up on it and so many people swore by it, so I decided to give it a go...bingo. My brain zaps felt different than yours. It felt like someone slamming me in the back/side/front of the head with a sledgehammer, and then the "buzz" would hit. Also, when I would turn my head or dart my eyes - brain zap. I'm glad you got off your benzo, though. Good job!

 

[Scarlet13]

Ok, as someone who has been in a somewhat similar situation I am going to share my thoughts, (I am not a medical professional).
1. I would find a better psychiatrist. You need a doctor who will respond to you and who will refill meds on time. This is not ok on their part. These are serious meds and this is your brain. You are frankly not getting very good care. My psychiatrist has a respond policy. Emergency situations she will respond within 24 hours. She would prioritize the refill of meds, especially controlled substances. Not getting your meds, tapering on your own are emergency situations.
2. If it were me, I would have gone back on the benzo at the full dose or slightly under. Cold turkeying a benzo is a life threatening emergency. Meds with a longer half life might allow you to feel fine after a cold turkey or a 50 percent cut for awhile, but when they wear off and A person is in severe protracted withdrawal, it is a horror story (potentially-seizures, psychosis, terror, insomnia) even at 50 percent cuts for some people. Even with small cuts like 25 percent symptoms can be debilitating. Some people also can be perfectly fine.
3. So, I would choose to go back on my benzo at the full dose or close to the full dose and then stabilize. I would not cut any of the other meds right now until I research, get appropriate supervision, and stabalize. They all can result in a acute withdrawal. Antidepressant withdrawal can be very hard.
4. I found benzo buddies to be helpful for more info on benzo withdrawal.
6. They say psych meds are best tapered one at a time for a 10 percent cut holding for one month at a time. some people do this more quickly and are fine. Some dry cut, or weigh powder or beads, some liquid taper. It is all so individual. I feel researching a drug before making a decision is best. Being supervised by a doctor is crucial.
7. Supplements like fish oil are great support for the brain. But they will not repair or hep a brain from a too fast withdrawal. Only the med itself, after stabilizing and tapered slowly or at the right individual pace will help. Also drug withdrawal can make it so that the brain will be hyper reactive to supplements. Again this is so individual and not true for everyone.
8. Also, I took Benadryl for years for sleep. It is non addicting and was a savior to me. My doctor suggested this and supervised me.

 

[squeakyboots]

Ok, as someone who has been in a somewhat similar situation I am going to share my thoughts, (...

This is a very helpful post. I am aware what I am doing is not ideal. I 100% agree I'd need a better psychiatrist. I placed a call and am waiting on a response. I don't have health insurance. I am limited in my resources. I figured I'd educate myself about all of this as much as possible and then take it on myself. My last VM to the office was responded to without much concern. They don't seem to be taking my "forced into cold turkey and benzo withdrawal" seriously. If I manage to find another doctor, great. If not, oh well. What other choices do I have? I am day 5 into my CT. I don't want to go back on those meds. I seem to be doing okay (not great by any means, but it hasn't been sheer hell) so far. I understand that it might be too early too tell. I joined BB the other day. Definitely an amazing site. I have been educating myself and communicating with others about this decision. I will not lie - I am scared about what I might be going into. But I feel like as long as I know it's "just" the drugs, and my body is readjusting, I should be okay and I can get through this. I have been taking Benadryl the last couple of nights but the sleep quality has been poor. Better poor than nothing, I suppose.

 

[Scarlet13]

Ok, good luck! Glad to hear you are researching.