October 25, 2010 at 8:22 pm #40525
Welcome to the Cluster Headaches Forum
March 19, 2011 at 1:40 pm #42616
hey guys, i have cluster headaches and nothing seems to stop them. any options.
March 19, 2011 at 1:54 pm #42617
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.
March 20, 2011 at 10:45 pm #42618
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.
March 21, 2011 at 3:09 am #42619
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…
March 23, 2011 at 3:16 am #42620
i suffer from severe cluster headache i am on prednisone,lithium carb.i find fresh cold air break the pain.
March 23, 2011 at 8:27 pm #42621
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?
March 27, 2011 at 8:37 pm #42622
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.
May 1, 2011 at 12:22 pm #42623
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.
July 11, 2011 at 9:47 pm #42624
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..
June 6, 2012 at 5:47 pm #42626
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.
November 5, 2016 at 2:58 pm #81515
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.
November 5, 2016 at 10:23 pm #81527
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)