I went out jogging because I felt restless, and all of a sudden, couldn’t walk or move from severe muscle spasms and cramps. Has this ever happened to you?
Haldol is heavy duty, and muscle related side effects can be very brutal. I’d call your doctor as soon as you can. If you felt restless it could have been because of the Haldol. It can trigger a need to move/run and it’s super unpleasant. If your restlessness was from the Haldol then running is not going to be the same as just going for a run. That need to move can be so intense that you just go out and move when your body is really saying it can’t handle something.
Have you ever experienced any dystonia before? How long have you been on the Haldol?
Again, Haldol is one of the most potent drugs out there. It’s side effects can be very pronounced in some people. I’d call the doc and talk things over. Muscle symptoms (EPS) tend to get worse or stay the same. You don’t adjust. It may be more beneficial to see if Haldol is safe for you. In some cases EPS will have lasting effects, so knowing your options with regard to alternative drugs is good.
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In the UK if you are prescribed haldol you usually also get procyclidine to tackle the muscle stuff. Think admin says procyclidine isn’t available in the U.S. Though.
i was given atvian with it.
this is the exact way I feel. I think the Haldol made me restless. I will speak to my doctor. Do you have any suggestions of other medicine? The side effects of Haldol are strong.
I just started it 2 days ago, and am on 4 mg a day. I think that is too much. It makes me very restless and like you said, it feels like my body is trying to run it out of me. It stops the voices, but at what cost? I need to be able to move and function also.
Definitely talk to the doctor. Ativan is somewhat helpful, but if you are experiencing EPS it likely is just going to take a bit of the edge off, long term it becomes ineffective and you have to keep upping the dose and then you run into all sorts of problems. I was not able to be medicated on anything without taking Cogentin for muscle side effects, and even then it wasn’t easy. Ideally, you don’t want to have to add something else, especially if it’s for side effects, and Cogentin isn’t pleasant to be on either. If you haven’t tried multiple drugs, it’s a better idea to try a new drug than try to control extreme side effects. You will always have some side effects, but there are certain things that become too difficult to manage or even dangerous.
What I have learned/found from personal experience, is that many of the first generation drugs/typicals (such as Haldol), will have more intense side effects - especially EPS. Many people find them effective, however if you are more prone to these side effects for whatever reason, it may be a good idea to steer away from them because the side effects can be such a burden that the treatment becomes very difficult or worse than dealing with the symptoms.
As for other medications, it’s so specific to your symptoms and how you typically respond. Like I said, the first generation drugs seem to be more difficult to manage in a lot of cases, but it’s all specific to each case. Have you tried many drugs? It’s so hard to know beforehand if something will be effective or not (there is a test I just had done that tests genetic markers in order to help identify which drugs are best for you - that may be something to look into), but some will have different side effects that are important to be aware of before trying - but that is not to say you should definitely rule out something just because there is a higher rate of specific side effects, your response is unique to you, but know what you’re taking. Some are more sedating than others. If you have any other medical issues, I would discuss that with the doc before starting something. There are some that will virtually guarantee a lot of weight gain which can then lead to other medical problems down the road.
It would be a good idea to write down a few notes to share with your doctor. State your concerns and see if he/she can work with you to find a treatment that works best. Additionally, there are other types of medications that can be helpful. I found that the antidepressant I take is incredibly effective for anxiety as well. It helps the depression enough, but controlling the anxiety helped me be more in control of my brain which lead to having an easier time managing the psychosis. Anxiety can be helped a lot through lifestyle, exercise/eating well/getting out, all of those things can make the psychosis better. Unfortunately it’s a balancing act, being able to voice your concerns to your care team is critical though.
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From one of my meds I developed an eye twitch. My eyes will dart really fast back and forth and I feel woozy for a minute.
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I take only 1mg haldol and congentin with it.
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do you take 1 mg in the morning and 1 mg at night? I was going to try cutting my pill in half so it’ll stop the voices and the muscle spasms.
I take 10 mgs of haldol at night and ativan 1 mg a day.
that’s some dose… does it give you spasms? I think I’ll do the Haldol at night and the atvian in the day.
The very first time I took Haldol (1994), my tongue curled in ways I couldn’t reproduce for the doctor. Got a shot of Benadryl. Yep, Benadryl. I take 5 mg twice a day of it now. If you’re having spasms and stiffness, give your pdoc a ring and see if you can possibly benefit from Cogentin. I take Ativan at night also, and they work in synchronicity, helping me relax and fall asleep. Cogentin was designed to treat Parkinson’s Disease, but is widely used to combat antipsychotic muscular side effects.
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My son also took Cogentin when he has spasms-it worked
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I take 1mg only late afternoon. So I can see if it’s going to make me spastic or lethargic.
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I was so bad when I started Haldol. I was taking the maximum dose. I was standing in front of buses and generally a mess. I started getting really foggy and lost track of the dose. It’s highly likely I was taking much more than I was supposed to unintentionally. Then I had NMS. That stuff is so crazy powerful.
As far as Cogentin goes…
Cogentin has been a lifesaver for me. I’ve been on a maintenance dose since 2000 and during full-blown dystonic reactions I’ve had plenty of IVs and/or shots. It’s very effective, but I never enjoyed having to take it. It causes a lot of dry mouth - it’s lead to dental problems for me, it can make antipsychotics bearable but it still isn’t always super pleasant.
If you feel that Haldol is an effective drug for you and you haven’t had success with others, adding Cogentin may very well be a great step to see if the muscle spasms improve. What I would consider a concern is that they are both very side effect heavy and powerful, and long-term that may become difficult to have to deal with.
There are countless trade-offs with all of these meds. I’m not a doctor, obviously, but I have a ton of experience with a few dozen of these drugs, and my belief is that in order for people to get the best care they need to know all the possibilities that can arise. Everyone will react differently for sure, but knowing your options can help you make the best choice for your situation. I don’t want to sound preachy at all, I feel like I’ve learned a ton about managing this crap and I hope that my ups and downs can help someone else not have to deal with as many downs.
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have you tried atvian
Yep!
Ativan has been the most effective for anxiety. Everything else I tried was very bad for me. Ativan is great for once in a while but becomes an issue if you need it regularly. You adjust to the dose so you need to keep increasing it, if your body adjusts too much you can get a very bad withdrawal from it. This renders it fairly useless as a safe and effective treatment.
Ativan doesn’t usually work a whole lot for muscle stuff, it will help relax you but you will most likely need something in addition. The muscle related side effects are possible with all antipsychotics. The area of the brain that controls your body movements is the same area that antipsychotics suppress. I can’t express the exact physiology of it, but the take away is, it’s a problem with all the meds. That’s why the Cogentin is effective, it is counteracting the trouble brought on by the antipsychotics. Something to remember is that muscle symptoms often either stay the same or get increasingly worse IF you don’t change anything else. There is also a dangerous possibility that these effects could become permanent to varying degrees - so if you are able to not have to deal with them it’s the safest route. Something I have found is that doctors are unable to understand the severity of these side effects. I don’t think they can imagine they are truly that bad, I can’t explain it to anyone who hasn’t had it.
Something else that’s really important! The level of muscle spasms is not likely constant or predictable. If you are taking a drug that is 2-3 times a day, it becomes hard to predict when they will hit, and therefore harder to control with Cogentin. I ended up feeling like a prisoner to dystonia. If a friend would invite me on a hike the reason I would decline would be that I couldn’t be sure if I’d have a flare up of muscle contractions and be far in the woods and not be able to treat them. I never left home without Cogentin, EVER, but even then I would have to dry swallow it (it tastes AWFUL) in so many different places and rush home (not easy when I was taking the bus everywhere) and lie down with a heating pad on my neck. My reactions to drugs are abnormally severe, but that is not unheard of. It may be possible for you to control it more easily. But if you find the muscle contractions are limiting your activities it can create a lot of fear. I felt like a lot of my anxiety for 14 years was caused by fearing the side effects caused by the treatment. That anxiety was only making the voices worse. It’s not pleasant at all.
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I need to get a dose of that Cogentin… I’ve been on Atvian and Haldol for 3 days with no voices. I cried thanking God and hope it stays. I do have lower back pain that is where my back gave out on me and I couldn’t walk before. Now it’s just the pain.
Do you take the Haldo, atvian and cogentin all together at one time?