Fighting Cluster Headaches
Well it is official...I am fighting a cluster. It started last Friday when I awakened to what I felt was a dagger searing my right eye and a jackhammer banging my right tempo. The very act of breathing air through my right nostril hurt and I could count the hairs on my head. The clincher came when my husband asked me what was wrong with my right eye lid. I asked him why and he said it was drooping. I knew then I was dealing with Horner's Syndrome.
Every night since that dreadful night a week ago, I've experienced severe pain in the middle of the night that has left me fearful of falling asleep. In addition, the cluster has now spread to daytime attacks as well.
I made an appointment and saw my neurologist and was placed on medication immediately. For years I have used Inderal LA and Elavil effectively. However I had built such a tolerance I required extremely high doses the during my last cluster. In addition, I gained close to 10 pounds a month on the meds I took and I was having great difficulty getting those additional pounds off my already large frame.
I wanted to try a different drug combination this time, so my neurologist is trying me on Topamax. We are raising my doses quickly so I can try and break the cluster quickly since it has already been going on for a week. I am remaining optimistic because I really want this to be successful. I am using several different rescue meds including Indocin, Fioricet with codeine, and Imitrex. And I use heat whenever possible. I have found Indocin to be very good so I often start with that drug first. I have also used Naproxen with relief and have found if I take it with caffeine it has worked during time when I can not take meds with sedation properties. I am thankful that I haven't been plagued with a lot of nausea. Light sensitivity can be an issue however.
When I have attacks, I will take my meds, take a couple minutes to close my eyes and focus my thoughts on positive expressions or quotes or affirmations, etc. I feel it is important to think positive thoughts in spite of discomfort. Taking a couple minutes to separate myself for this exercise is important when I have to function in spite of my pain. It is like giving myself a pep talk to encourage myself to get through the challenge ahead of me. I then do the best I can to do just that. Sometimes the meds will kick in and I will feel relief and be grateful for that; and when they don't take away the pain, I get myself home at the end of my work day, take the next dose of medication, lay on my heating pad and pray for relief to come.
It is now Sunday and I have been taking my Topamax now as directed and I am still having the headaches. I am not giving up hope however. I am still ramping up on the meds. I will be increasing my dosage in a few days and then I may feel the relief I need.
In the meantime, I have created a headache log to keep track of how I am responding to the new meds. I have just taken a spreadsheet and labeled the columns by date , time, activity, intensity, action, response. I put date and time of headache onset, what I was doing at the time, what I did or what meds I took and how I responded. I enter something like "the headache was a 6/10 and then went down to a 2/10 in 3/4-1 hour." I also added a notes column where I put down things like "ate ice cream or had pop corn at movies; or was near a lot of smoking people, etc." This might help in identifying triggers, etc. The whole idea is to capture information that might help identify triggers, or patterns or identify the effectiveness of medications or treatment combinations.
Hopefully this cluster will resolve quickly. I have a tool box that I have built over the years with a variety of tools in it. I will pull them out as needed. I must remain optimistic. I know my thoughts effect how I feel. The best I can do is a day at a time. I will work with my doctor and as a team we will beat these! I know we will! I'll keep you posted!
Related Topics: Technorati Tags: cluster headache, medication, health and wellness
Every night since that dreadful night a week ago, I've experienced severe pain in the middle of the night that has left me fearful of falling asleep. In addition, the cluster has now spread to daytime attacks as well.
I made an appointment and saw my neurologist and was placed on medication immediately. For years I have used Inderal LA and Elavil effectively. However I had built such a tolerance I required extremely high doses the during my last cluster. In addition, I gained close to 10 pounds a month on the meds I took and I was having great difficulty getting those additional pounds off my already large frame.
I wanted to try a different drug combination this time, so my neurologist is trying me on Topamax. We are raising my doses quickly so I can try and break the cluster quickly since it has already been going on for a week. I am remaining optimistic because I really want this to be successful. I am using several different rescue meds including Indocin, Fioricet with codeine, and Imitrex. And I use heat whenever possible. I have found Indocin to be very good so I often start with that drug first. I have also used Naproxen with relief and have found if I take it with caffeine it has worked during time when I can not take meds with sedation properties. I am thankful that I haven't been plagued with a lot of nausea. Light sensitivity can be an issue however.
When I have attacks, I will take my meds, take a couple minutes to close my eyes and focus my thoughts on positive expressions or quotes or affirmations, etc. I feel it is important to think positive thoughts in spite of discomfort. Taking a couple minutes to separate myself for this exercise is important when I have to function in spite of my pain. It is like giving myself a pep talk to encourage myself to get through the challenge ahead of me. I then do the best I can to do just that. Sometimes the meds will kick in and I will feel relief and be grateful for that; and when they don't take away the pain, I get myself home at the end of my work day, take the next dose of medication, lay on my heating pad and pray for relief to come.
It is now Sunday and I have been taking my Topamax now as directed and I am still having the headaches. I am not giving up hope however. I am still ramping up on the meds. I will be increasing my dosage in a few days and then I may feel the relief I need.
In the meantime, I have created a headache log to keep track of how I am responding to the new meds. I have just taken a spreadsheet and labeled the columns by date , time, activity, intensity, action, response. I put date and time of headache onset, what I was doing at the time, what I did or what meds I took and how I responded. I enter something like "the headache was a 6/10 and then went down to a 2/10 in 3/4-1 hour." I also added a notes column where I put down things like "ate ice cream or had pop corn at movies; or was near a lot of smoking people, etc." This might help in identifying triggers, etc. The whole idea is to capture information that might help identify triggers, or patterns or identify the effectiveness of medications or treatment combinations.
Hopefully this cluster will resolve quickly. I have a tool box that I have built over the years with a variety of tools in it. I will pull them out as needed. I must remain optimistic. I know my thoughts effect how I feel. The best I can do is a day at a time. I will work with my doctor and as a team we will beat these! I know we will! I'll keep you posted!
Related Topics: Technorati Tags: cluster headache, medication, health and wellness
18 Comments:
I have suffered for years as did my father, and have thankfully outgrown them, I believe through menopause, and maybe Topamax. I did find that breathing oxygen was the only thing that actually made the pain go away. I feel your pain!
My husband has suffered with these for a number of years. Our G.P. put him on blood pressure medication (Verampamil s/p?) and he hasn't had one since!!!!
I feel for you. I read about using oxygen as a rescue method and asked my nurologist about it. He wasn't familliar with it but was willing to try it. My HMO ok'd it and I got some tanks from a medical supply place. It works like a charm. I go on oxygen as soon as I can after the onset and within 5 minutes it's gone ! With no "headache hangover"! It doesn't solve anything but as a "rescue" it a lifesaver. Hope this helps.
I would echo one of the comments and ask your doctor about verapamil - it is my first choice of a prophylactic drug, but it often requires high doses, up to 960 mg and higher. In addition to oxygen which was already suggested intranasal Zomig works for some while Imitrex nasal spray is less effective, but the best is Imitrex injection. NYheadache.com
I don't suffer from cluster headaches, but migraines. I have found that 2 advil and 2 tylenol taken at the same time will kick it faster than anything else, if done right at the beginning. Unfortunately, I am now allergic to any of the NSAIDS, including advil, so I am stuck with the pain for now. I am not a doctor, and will not vouch for how safe this is for anyone. I cannot prescribe medications anywhere, so please check with your doctor before trying this.
I have suffered from chronic migraines for over 40 years. The only med. that works is Imitrex. But the Imitrx makes my kidneys hurt and 1year 8 months after starting Imitrx I began having kidney stone problems. So many stones they stopped counting. Nothing else works on my migraines. I have tried all the preventive all the triptans nothing. I am stuck between a rock and a hard spot with no light of hope. I have to work so I have to take the Imitrx. I average 2-3 headaches a week and have my whole life.
The oxygen tank think works good for some. I tried it in the late 80s in college and then again late 90s never helped me a bit. Glad it helps some people.
Heard from my dr the oxygen works good fof cluster headaches but not for migraines. Nobody mentioned Maxalt which is the new Imitrex - I used Imitrex years ago and it use to make me so sleepy and dizzy at times. You can take Maxalt and continue with what you were doing with ZERO side effects. If you catch it before the migrane comes on it is stop it dead. Others like this are Relpax, etc. My dr. gave me a few to sample before we decided on Maxalt. It is a small pill vs. the nasal spray so much easier to carry, etc.
I also took Verapamil, all it did was cause me to gain weigh as well as the Amitriptyline (which that one did seem to work but I just keep gaining weight like crazy on that one so I wanted to go off of it).
I now take Topamax - now up to 150 mg. a.m. and 150 mg. p.m. migraine are reduced from at least one a week to around one every couple of months and they are far less severe. Even if I have to stay home with one I can watch a movie, etc and enjoy it (movement is still too much for me) but I no longer lie in a dark room and wish to die. I would say Topamax is a miracle as far a reducing the frequency and the severity is also quite remarkable. My dr. tells me we can still refine the dose more to try and improve upon it.
Also, lost the weigh from the other drugs they had put on in the first 2 montbs on Topamax plus some. Back to my high school weigh...that is one of the side effects of Topamax....weight loss...I'll take it after the weigh gain side effects of the countless ones that did not work!
Feel Better all of you.
I can totaly feel the pain , and it understand. Without going into details , all these symptoms is a daily issuse . The one thing angers me the most is playing telephone tag with the doctors office or the pharmacy . Behind that , the nurse saying " we can't fill that Rx it's too soon ." WHAT ??? , OR "It's looks ...." then the nurse would give HER opinion , my blood pressure would rise ,and the headache .. .well you understand
I am probably a little late in commenting but I'll leave one anyway. I don't suffer from cluster headaches but rather migraines. They run in the family, both sides actually..so I was bound to get them!
About 5 years ago they tried all kinds of medicine and Topamax was the only thing to work. At the time I was also on birth control. The migraines really subsided and I talked to the doctor about stopping the Topamax because I didn't want to be on medicine all my life. Then I lost my health insurance, so I was taking nothing (Topamax or birth control).
Fast forward 4 years, have the health insurance, the birth control and the migraines are back. So the neurologist puts me back on Topamax. I had heard that as your body changes, medicine you were once able to take may affect you differently. The Topamax was making me angry, moody and I was so thin that people were starting to think I was having other problems. Then I started with numbness in my right arm and leg. They stopped the birth control (in case I had a stroke) and they stopped the Topamax. I have been migraine free for almost 3 months and I love it! I still get periodic headaches but nothing a little Tylenol won't fix.
Moral of my long (sorry!) story - be careful with the Topamax. It may make the migraines stop but can change your personality.
My life has totally changed since my doctor put me on Topamax. I feel better than I have in 15 years. You and your doctor should monitor side effects VERY carefully, though, as it will not benefit everyone. I was having migraines 3-5 times a week and now I haven't had one since we were ramping up slowly to my recommended dosage.
For break-through migraines, the doctor put me on Migraten, which I hadn't heard of, but has also done wonders. I had been on Zomig before, which would make me feel horrible before it made me feel better. I don't feel any ill side effects from Migraten and can totally go about my day when I take it.
I cannot stress enough about being careful when you are ramping up on to your recommended dosage of Topamax, though. For example, I got an early warning one day when I was at work typing away. I normally type about 80 wpm. I was typing away and could feel myself processing the words that I was typing, but was typing something completely different. Later that day, I wasn't paying attention and got into a little fender bender right in front of my house. I am pretty sure I should have just stayed home that day.
Everything was normal and fine once I got used to the meds, but the ramp up was a bit difficult, so just be careful.
The bonus was that I too, was a bit overweight and lost lots of weight on Topamax! I can fit in my wedding dress again!
I too have suffered from migranes for years, but began taking Topamax when I was 18 years old. It took almost a year for me to see a positive side to the Topamax. I had asked my doctor to change the medication, but she had said that since it is used as a preventative medication it will take some time to be effective. I am so glad that I waited because after 4 years I was able to slowly reduce the intake of the Topamax until I stopped taking it. It has been almost three years since I have stopped taking the meds and I average about three migranes per year, but the good news is they have never lasted longer than a couple of days and excedrin migrane or advil migrane has always been able to stop it.
When i first went to the doc she put me on Topamax and it made me very mean and anxious. I had to stop because people were afraid to be around me. At work, they would not come near me and my husband was about to leave me. Now I am on Keppra and so far so good. I still get a headache about twice a month but I can live with that. I am 30 and don't need to lose my job.
I've been on Topamax for about 3 weeks now and I'm having palpitations. Yes, the headaches are a bit better but the rapid heart beat is uncomfortable. I tried to increase the samples as I was told to do so but I kept it at 25 mg until my next appt. I feel my mood is changing too, so we'll see how all goes. Prayer and faith in God is definitely the answer, but of course we need to use common sense to check on our health. They go hand in hand. Be well.
I had cluster headaches about 10 years ago and my DR. put me on 240mg of verapamil once daily and within 2 days the cluster was broken. Then in July of last year, 2007, they started again and again I was on the med. It worked the same this time as last. The 1st time I took it for about 9 months, so I assume that I will take it for about the same time this time. It is a miracle drug!
I have been getting migraine / cluster headaches for the past 12 years now. I have taken Zomig, Inderal, Fiorcet, Imitrex, Amitripiline and now starting today, Topamax, 50 mg twice a day. It has been a nightmare. I work for an oxygen company and according to one of the respiratory therapist's it can work so I can going to try that next but need to give topamax 30 days at least.
i am 16 years old and have had migraines everyday for a little over 8 months now. i have been to several doctors and have had several E.R trips and they cant do anything for me...i was just perscribed Keppra, used for epilepsy, and am not sure why...if you know please HELP!!
I have read a lot of your stories, and I want to know what is the timer frame that these doctors feel it takes to get off of topamax? I could not stand to take the 25mg it had my arms and legs numb for two days. They say to just suddenly stop would cause adverse affects. I would rather have the once or twice a month migraine than these side effects.
I want to say thanks for the information. I history is the classic migraine from the age of fifteen. The headaches that I have suffered from since 1993 were different. The classic migraine had the aura, smell, sensitivity to light and sound, nausea. The new headache was chronic and daily with the severity going from liveable to incapacitating. It was like a spear going through my left temple, behind my left ear and radiating down my neck. For two years my PCP treated me for a sinus infection. Then during one bout that was unbearable I was given an MRI, I was diagnosed with an archnoid cyst. WOW, there is the reason for my headaches, my sinus is fine. After being referred to a neurologist that recommended a shunt to decrease the size of the cyst,..... two brain surgerys and one stomach surgery for inflamation of my liver because the drain tube was poking me, I was told by several other neuro's that it was all in my head, that the cyst should not be causing me pain. Did anyone try anything else, not, they just keep telling me it was in my head (DUH). Finally after 5 years I have been referred to a neuro that specialized in headaches. Go figure. I have been put on Indocin. At first I thought this Dr. is just trying to appease, because I know that Indocin is given to people who suffer from gout, but that was not the case I was told that I have been suffering with a chronic daily migraine, called Mibrumes. YIPPEE, I'm not crazy! I was in my head!!!!!! Hopefully this is going to work, I won't know for a couple of weeks, but it seems to be working.
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