Welcome to the Cluster Headaches Forum
Welcome to the Cluster Headaches Forum
hey guys, i have cluster headaches and nothing seems to stop them. any options.
I’m taking prednisone and gabapentin which neither seems to work. I have been taking these now for 4 days. My headaches are still hitting me at least 2 times daily and wont go away lest I sleep. Docs said not to take anymore pain aids as I may have over satuaded my body before I was diagnosed with cluster.
By Teri Robert
Gabapentin can take up to three months to work as a preventive. Have you ever tried oxygen when you get a cluster headache? What pain aids were you taking? Most of the cluster sufferers I know find pain medications don’t help very much. Most of the folks I know use Imitrex / sumatriptan injections or oxygen. You do have to be careful not to use the Imitrex / sumatriptan more than two or three days a week or you get into medications overuse issues such as your doctor mentioned.
I have been diagnosed with chronic cluster headaches as well as Migraine. I can’t use triptans, so right now when I go through a cycle I use high rate oxygen. Thankfully it works a good percentage of the time. Wish it worked all the time, but at this point I’ll take what I can get. High rate oxygen can be damaging to the lungs if it isn’t done right, so please consult your doctor before trying it.
A drop in nighttime melatonin levels has been associated with cluster headaches in a number of patients. Some doctors are asking their patients to try melatonin at night before bed. The dosage often exceeds that which the OTC labeling says you should use, so should only be taken after talking to your doctor about it.
This link http://bit.ly/hFXVlG discusses the use of melatonin and the implications of increased body heat in cluster headache generation. I now sleep with my house fairly cold because it does allow me to sleep better, resulting in fewer Migraine attacks for me. I haven’t had a cluster cycle in quite some time so maybe there is something there? I’m not really sure, but it’s interesting…
i suffer from severe cluster headache i am on prednisone,lithium carb.i find fresh cold air break the pain.
By Cluster Girl
I have had chronic clusters since 1988, but wasn’t diagnosed until 2009. I finally got into a neuro this past sept. (2010) and she put me on topamax. It only helped a wee bit, at least after 4 months I wasn’t screaming in the night. I have never been prescribed oxygen. With my high blood pressure, she requested my primary doc to put me on verapimil and that has helped A LOT. (the imitrex was a zero help) Plus prayers and Masses (I am Catholic) I’m doing nicely. Instead of having only about 5-7 days between attacks and attacks lasting about 30-60 days continuously, I have not had a full attack for the past almost 30 days. first time in about 5 years I’ve had this break. I still get pain and buzzing in the back and left side of my head, but pain is nothing like before. I mean it’s’ a 1 or 2, sometimes a 5 or 7 instead of a constant 18 or 20. Thank God! Other meds I’m on are for Bipolar and such…maybe that makes a difference too?
The wonderful thing about high rate oxygen therapy for Cluster Headaches is that it can be used with ALL medication choices – preventive therapies as well as abortives such as triptans. I think it’s interesting, since this is usually considered standard therapy for Cluster Headaches and is usually very effective, that no one here has been offered this option.
I’ve had cluster headaches now for over 10 years. My doctor has had me on Topamax twice a day for about a year and a half. I also take imitrex injections for migraines. My last cluster was 3 months ago until two nights ago at 3am! I’m so tired. I will have about 8 a day and a period lasts about 2-4 weeks. Thanks-I just needed to vent.
I feel for you guys who have this, I have Cluster headache myself since April this year, still having them. I take Verapamil as preventive and Imitrex shots for the pain. But now I finally got oxygen and it seems to help most of the time. Also I have Zomig spray for smaller attacks and believe it or not the energy drink Red Bull kills smaller attacks also. I am so tired of having this now, about 3 attacks a day plus shadows.. I hope it will go away soon.. good to know there are others going thru this also..
around 5 years ago my clusters started getting more frequent and I finally got diagnosed. Relpax actually helped and I felt saved. Then I had a heart related incident probably brought on by the medication and no more triptans for me.
I’m taking Norvasc and I think it’s taken the edge off the headaches, the worst I get now is around an 8 out of 10. Oxygen will keep an attack off for a while, but doesn’t stop it completely. What does work is exercise. If I run for 20 minutes I can break the attack. I’d much rather have the Relpax, but at least I have something.
Dear friends, I have been taking ergot for the past seven years for my cluster headache.
For the past five months been having attacks literally every day,so i am on 2mg of ergot a day.
I am very worried i am gonna die,so does anyone have a idea with what i can replace this medication.Kind Regards,Luke.
By Brooke H Moderator
We’re glad you reached out! I’m so sorry you’ve been experiencing cluster headaches daily for five months. That sounds awful! With any change in symptoms or if you are concerned you are going to die, we highly recommend you seek medical care that you deserve (if you haven’t already) from your primary care provider or at the ER (https://migraine.com/blog/when-doctor-er-for-migraine/). For your safety, we cannot give out medical advice over the internet. In the meantime, are you seeing a headache specialist? These are doctors who have special training in treating migraine and all types of headaches. Feel free to learn more here: https://migraine.com/blog/making-decision-see-headache-specialist/.
Brooke (Migraine.com team)
`Hi everyone. I’m Michelle and I diagnosed myself with clusters because here in arkansas they still really just think oh it’s just a headache. If I hadn’t found this site a couple years ago I wouldn’t know anything. I take CGRP shots and have a marijuana card. I am not really sure if all of the migraines I had were clusters, because I tend to forget them after they are gone. But when I read about cluster symptoms it sounded like my life. Headache cycle this last time lasted from Dec. 11 to Dec 30th. It was cycles just like described from these other people. Another thing that was disturbing is that if I was awakened suddenly from sleep they would start up. This made it impossible to do things that I needed to do. I have been taking a course in assistive technology for the past year. I have been slowed down because I was in a constant cluster I think but didn’t know it. So every time I would take time off to recharge I’d go right back to doing something stressful. So I have decided to find other ways, much more relaxed ways to learn what I need to learn. I don’t know how I will do this exactly, but I am determined that migraines can’t steal stuff from me if I don’t let them. I’m just going to have to do things differently than I was doing them. I will have to work on my podcasting skills and get more people to help. I like helping people with their tech problems. I do not like all the pain and am just too old to keep on doing it to myself. Anyway, does anyone else notice the red alert headaches with clusters? This is where you get one right before bed or right after waking up. Instant intense pain! Needs immediate attention. The most interesting thing I found was use of the word cycles. I notice definite patterns. Come in the afternoon most of the time and just like tides, they get pushed back just a tiny bet each day and then finally recede to nothing. Also, does anyone else ever experience severe back pain when the cluster starts to break apart? I have been experiencing a lot of that for two years or more, but just always thought it was just getting old. My doctor said it was sway back. But the pain is excruciating. I tended to go with him since he’s the doctor. If he said it’s sway back, it must be. But after this last cluster it dawned on me that I’ve been having back pain for a while and this happened to be immediately after the cluster was starting to break. I am going to pay attention next time my baek goes out. If the back pain is linked to the headache, what could that mean I wonder? They want to do some kind of test to check artaries in my head. It’s not like I want a brain anurism, but in one way I’d be relieved if that’s what was causing the trou’ble, but that would probably only last a second because then I would be thinking brain anurism, I could die. But it would almost be a relief to have a specific thing that we could point to and say yeah, that’s the thing that caused the trouble. Lets remove it. But although I’d love to blame it on something, I have to remember that migraine is hard to understand all the way around. I must strive to be patient with myself and others. I have had them since I was 13. Back then we tried every medicine known to man. None of the trip didn’t do anything for me. Topamax made me have Alzheimer’s. And some of the other medicines were even worse.t