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KateA
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NEW & Desperate for suggestions
« on: Apr 25th, 2004, 6:51pm » |
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Hi Everyone,
I am new to this site, and while I am not happy to be diagnosed with cluster headaches, I am relieved to find others who can help me, and hopefully I can support in some way.
I have been having headaches for a year now. They came on out of the blue,I had never had headaches in my life, nor has anyone in my family. My neurologist said I had basilar migraines, and treated my with abortive therapies, when that didn't work, we moved to topamax. I maxed at 150 mg/day, and still had the headaches every day. Felt like somelittle evil being was inside my head trying to kcik my eyeball out of my eye socket. The pain radiates out my ear and into the base of my head at my neck. I also get these really awful vibrations of the eardrum,ugh! I get the twinkling arura and white spots in my left eye.I am very sensitive to light and noise.I do not,however, get a runny or stuffy nose at all. I am extremely sensitive to alcohol now...a headache within an hour of a glass of wine!
So I tell all of this to my neurologist, he tells me he is stumped by my case. I don't get it. I am in excruciating pain, crying on the phone with his receptionist, telling her I am goingto the ER. 8 phone messages in one day! He doesn't call me back. Finally, I go to get a second opinion with a doc at UC San Francisco. He says I don't have migraines (nice to know a year later), that indeed I have chronic culster headaches. He was wonderful, spent an hour just talking and seemed to know what he was talking about, then presented a lot of different treatment options.
Since I am already on the Topamax, we are going to go that route, adn just increase it to therapeutic levels, 300-400mg/day (I'll get REALLY skinny now  ) If that doesn't work, we'll negotioate other treatment plans from there. He also mentioned the surgical option,since this has been going on for a year now and I haven't had a single pain free day. I personally am NOT high on this idea, I'd like to exhaust ALL other options and have that as a VERY last resort.
By the way,the new neurologist mentioned, and I have read, that it takes 2-6 years to break the cycle of chronic cluster headaches, true? I don't know that I can take that.
So, he gave me the zomig and migrainal nasal sprays, as well as some percocet for abortive therapy. Unfortunately, the sprays only reduced the attacks about 15-20%. The percocet distracts me, b/c obviously you get a little buzz, and reduced the pain about 40-50%. ALl in all, not good enough for me, still makes me want to put a hot poker through my eye.
I am in SO MUCH PAIN. These headaches wake me in the middle of the night (even if I take an ambien). My boyfriend says I moan in my sleep (very attractive for sure). I wake in the morning, they are there. They intensify in the late morning. Heat or cold doesn't help. I just walk around my apartment contemplating putting my head through the wall.
What can I do while I am waiting for the Topamax to work?
Since nothing really helps, I am really trying to keep moving through my life, I don't want to miss out on my life. I just finished another degree and started a new job that I love. It's amazing how much pain you learn to live with, but at the same time, it's so draining. I feel like I've aged 10 years in the past year.
I also feel like in some way it is my fault, like I brought it into my life. How do I not feel like that? This whole situation is beginning to run me.
Oh, and does anyone have any dietary ideas?
I really need some help, gang. Any suggestions are so welcome. I know this is a lot to read, so if you made it this far, thank you, you are kind to take the time.
Best to all out there, I hope you are all living with little pain, lots of love and great peace!
xoxo, Kate
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1MajorPain
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Re: NEW & Desperate for suggestions
« Reply #1 on: Apr 25th, 2004, 8:02pm » |
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Get your doctor to prescribe O2!
<---- Read up on it on the left side of this screen under oxygen info. I'm sure others will add to this.
Best of luck!
Major
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Re: NEW & Desperate for suggestions
« Reply #2 on: Apr 25th, 2004, 8:21pm » |
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Kate,
This may be clusters, but hope it's not.
Sounds like your abortive therapies are not working out too well for you. Many of us here swear by O2 (high flow through a mask) and Imitrex (injections are the fastest and most powerful). Drugs that make you sleepy could just make things worse.
As far as 'the surgical option' - There is NO guaranteed option. Believe me, I've had my share !
One other suggestion...drink plenty of fluids while on the Topamax to reduce your chances at getting kidney stones.
Goodluck
Unsolved
PS. Kinna unusual for a person to start off there first cycle as a chronic. I guess it could happen, but a little far fetched. Maybe it's some kinna chronic daily headaches you are experiencing. (Just hoping it's not clusters)
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joesf
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Re: NEW & Desperate for suggestions
« Reply #3 on: Apr 26th, 2004, 10:53am » |
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Kate,
The oxygen is your best bet to alleviate the pain without taking drugs. You should give it a try. As far as the diet, I believe chocolate is a trigger for me as well as alchohol.
Hope you feel better.
I am in San Francisco too. I am ECH.
Joe
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Karla
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Re: NEW & Desperate for suggestions
« Reply #4 on: Apr 26th, 2004, 11:32am » |
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I to had never had a ha in my life until one day out of the blue I got hit with a cluster headache. I was getting hit 8x a day everyday. This has lasted for 6 years. I started out chronic also. It took a year for me to be correctly diagnosed. I was originally diagnosed with migraines. However, I now get those also and know the difference between the two. I tried every preventative out there and nothing gave me any relief. The percacet and vicadin helped reduce 10's to 8 or 9s and kept me out of the er and from committing suicide but I still had no quality of life. I was hit off and on from the moment I woke up till 2am. Then I would crash for the night. I became severely depressed and suicidal. Good and honest communication with your primary dr is very important. I got a referal to a shrink who perscribed an antidepressent. It helped immensly. Then I had a mental breakdown from it all and had a phycotic episode. Not fun. It ment more meds. Be sure to find a knowlegeable neurologist who specializes in ha. Oxygen works miricles for aborting ha. Imitrix ns is almost as fast as the injection so if you are like me and hate needles nasal spray is very effective in aprox 10min. Zomig, Axert are other good meds to try for abortives but they can take up to an hr to kick in. Oh zomig has a ns now so again you could try that instead of the imtirix ns. I tried topamax up to 600mg and it had bad side effects for me and didn't help my ha at all. There are many preventatives to try. Be sure to try verapamil and the dose can go as high as around 960mg and if that doesn't work try lithium at around 900mg. Sometimes if these two meds don't work seperately they will work together in a combo. Predisone works great for alot of people to abort cycles or give temporary breaks but I have found that they don't like to use that on chronic people because it isn't for long term use. There are lots of other prevenatives to try like neurontin, tegretol, elavil, indomethacin, propranol, and many more. So hopefully you will find something that works. I finally found my answer in pain management but that took 4 years of trying other meds and a mental breakdown before they went that route. I will pray that you will find a solution soon. Wishing you pain free days and nights.
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Karla
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maryo
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Re: NEW & Desperate for suggestions
« Reply #5 on: Apr 26th, 2004, 11:57am » |
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If you haven't already figured this out, YOU have to take charge of your treatment. Find a knowledgeable, understanding, and sympathetic doc who works with you as partner. Develop your own treatment plan -- actually write it down. Elsewhere on this website people mention oxygen, water, magnesium, and melatonin. I also take a multi B vitamin and vitamin E every day.
This is a disease you did nothing to bring on yourself, just like MS. It's rotten and people just don't understand except here.
I have never met aother cluster headache sufferer in person. I had CH 20 years before discovering this website and discovering that my pattern of H/A is Classic Cluster. Then I went in to see my doctor and announced the diagnosis as fact. I use Cafergot to abort attacks.
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KateA
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Re: NEW & Desperate for suggestions
« Reply #6 on: Apr 26th, 2004, 12:17pm » |
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Thank you all for your replies.
Yes, my Dr. is very certain these are cluster headaches. He has said it is very rare for women to get chronic cluster headaches, and even more rare for the first cycle to be chronic, but that indeed I do have them. Such a bummer. This weekend was particularly tough. We are having a heat wave in San Francisco, and although I am drinking A TON of water, I can't seem to stay hydrated.
As for the meds...I have tried the nasal sprays, they don't work. I haven't tried the oxygen, although we did discuss. I will have to press for him to get me tank. If the upped does of the topamax does not work, we are moving to the lithium or verapamil, any side affects anyone can tell me of?
I am also seeing a therapist to deal with the mental side effects, trying to not let it run my life, it's so hard. Everyone tells me I'm so strong, I feel like a whiner. It's so hard all the time, everything takes so much energy, and I don't want to always have to push myself. But when I don't I feel like I'm failing myself. It's very complicated, but I think you all may know what I'm talking about.
I'm trying to take my treatment on myself. I'm just hoping to learn from what others have already experienced.
Does anyone know of a support group in San Francisco area?
Thanks!
Kate
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Karla
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Re: NEW & Desperate for suggestions
« Reply #7 on: Apr 26th, 2004, 12:27pm » |
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verapamil tends to constipate you real bad. And the higher the dose the worse it gets. At least that is what I found. I have heard others mention the same side effect. Verapamil also lowered my blood pressure and made my heart have irregular rythems at high dose. Lithium had no effects on me at all. I enjoyed taking it for a couple of years. Topamax made me loopy and I couldn't remember anything. Indomethacin can be real hard on peoples stomach. Although I was on it for 6 months I had no problems with it. Remember though that everyones body is different and we all react differently to meds. So try to stay optimistic when trying a new medicine.
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Karla
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KateA
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Re: NEW & Desperate for suggestions
« Reply #8 on: Apr 26th, 2004, 12:39pm » |
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Which meds affected your weight?
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Re: NEW & Desperate for suggestions
« Reply #9 on: Apr 26th, 2004, 12:50pm » |
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Just wanted to add, if starting Lithium...Litium levels may be required (blood tests) depending on dosage. Too much can be toxic.
Unsolved
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Karla
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Re: NEW & Desperate for suggestions
« Reply #10 on: Apr 26th, 2004, 2:25pm » |
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The antidepressents effected my weight and I gained over 50 pounds there. I tried several of them. Elavil, celexa, effexor, and remeron and geodon (antipychotic) I know predisone will blow you up alot also.
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Karla
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hreslingozer
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Re: NEW & Desperate for suggestions
« Reply #11 on: Apr 27th, 2004, 8:31pm » |
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Hi KateA,
Cluters are pretty atypical. My neurologist said that having different symtoms than others is very normal, but they all have a couple things in common. Yours sound like cronic cluster to me.
Try Verapimil. I had to up my fibre and drink lots to avoid constipation, but otherwise I have been tolerating it well. I have been a sufferer for 3 years now and have found it works well, dulls my 10's to 4's or 5's and otherwise has no side effects. I take ergotamine for the bad acute ones, but they are usually only at the start of the cycle.
Ergotamine is pretty good for acute ones if yours tend to be long -- it works for me in about 1/2 hour, which is a lot better than the 1/2 to 3 hours that it usually lasts. You just have to track your weekly intake as too much isn't good.
I can't believe they gave you narcotics. I once had a doctor give me percocet, I chucked them 2 days later. No relief from that at all!
Good luck with whatever you choose. Hang in there!
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HypnoticFreddy
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Re: NEW & Desperate for suggestions
« Reply #12 on: Apr 27th, 2004, 10:46pm » |
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For sure you should try Verapamil. It is most commonly given as a 1st line defense preventative.
2nd I just stopped a cycle with Topamax. I was actually getting relief at 100 mg. As I understand it. 200 mg is maximum USUALLY used therapeutically for either clusters or migraines. For seizures, the dosages go higher.
If you are not getting relief at 200 mg, my neuro told me to taper off. It ain't working.
Lithium as mentioned above is good, but yes, you will need some blood work occasionally as you need to maintain a reasonable blood lithium concentration.
Depakote is another drug now being used as a preventative. Both Lithium and Depakote are mood stabilizers and anti-convulsants also.
I believe that both Depakote and Lithium have weight-gain as side-effects. As Karla mentioned. A few anti-depressants do as well. Remeron is one of them.
I can tell you this. If the issue of gaining weight is more worrying than preventing cluster headaches, than truthfully, you don't have cluster headaches. Unless you have a severe mental affliction about weight. I would rather gain 50 lbs, grow a 3rd nipple, and have a constant protruding boner than have cluster headaches.
-Scott
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Callico
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Re: NEW & Desperate for suggestions
« Reply #13 on: Apr 28th, 2004, 3:10am » |
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Hi Kate, and welcome aboard.
I have only three things to suggest positively, and one negatively. Negative first. DUMP THE NARCS!!! They will do no real good for the HAs. You just get to where you take enough that you don't care, then you are addicted and have two issues to deal with. There are many on this board who can attest to that. Some use them and get a little relief, but on a full blown HA you won't notice any relief
Now for the good stuff.  For me, I use Verapamil at 240mg x2 (any higher and my BP bottoms) and Lithium at 300 mg X2 (I plan to ask to increase the Lith when Isee my Neuro next week). Those are my preventatives. O2 works well for me as an abortive. Be sure to read the information on the oxygen button to the left. Print out any of the material that you think might be helpful and take it with you next time you see the Dr. This does two things. First, you educate yourself so that you can work with the Dr. to develope the treatment that works for you. Second, the Dr. knows that you may very well know as much about clusters as he does and he can't blow smoke at you. No two of us have the same reactions to CH, so each of us has to work out his/her own treatment regimen.
One other thing that I have no personal knowledge of, but am looking at seriosly is found at clusterbusters.org. I am not endorsing them, but several that have become good friends here have found real relief there. That is an issue you will have to deal with on your own.
Hope this helps and makes some kind of sense.
Jerry
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Charlie
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Re: NEW & Desperate for suggestions
« Reply #14 on: Apr 28th, 2004, 6:26am » |
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Welcome to the fold and I'm sorry you have to deal with this horror. Look around here and you'll find some good ideas and support. You might try very vigorous exercise when getting hit. It has worked for some.
This next idea is a technique that worked for me:
Dr. Wright’s Circulatory Technique
What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this method but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as a slight expanding of the artery into your arm while at the same time literally trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck
Charlie
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Re: NEW & Desperate for suggestions
« Reply #15 on: Apr 28th, 2004, 9:10am » |
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on Apr 27th, 2004, 10:46pm, HypnoticFreddy wrote: I would rather gain 50 lbs, grow a 3rd nipple, and have a constant protruding boner than have cluster headaches.
-Scott |
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KateA
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Re: NEW & Desperate for suggestions
« Reply #16 on: Apr 28th, 2004, 11:44am » |
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Ok, these are all really helpful suggestions.
As for the narcotics...I was resistant to taking them...my doc said, why suffer, take it when you have bad pain, at least it will help. I have only taken something as last resort, and am VERY sensitive to the fact that it doesn't really help the pain, only distracts me from the fact that I'd rather jump off the Golden Gate Bridge that focus on my headache.
As for the weight...it's not that I'd rather not gain weight than have a headache, it's just something I've struggled with my whole life, so I want to be informed, that's all. Sometimes doctors don't tell you that a drug will make you gain weight, then 20 lbs later you can't figure out what's going on, and if you've always had a weight problem, you think it's something you've done with your eating habits.
As a side note...while all this is going on, I have the complication of sever endometriosis and recurring ovarian cysts which my ob/gyn "team" is trying to manage, so I am familiar with the weight gain and loss based on those drugs. Originally we thought maybe it was hormones causing the problem, but have been off those drugs for a long while now, so the doctors are all certain it's not.
Needless to say, it's been a rough year for me. I very much appreciate all of your suggestions. I'm seeing another doctor Friday, so I'll do my homework and see what I can accomplish then.
THANKS!
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Karla
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Re: NEW & Desperate for suggestions
« Reply #17 on: Apr 28th, 2004, 12:24pm » |
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I had severe endo also. My drs thought it might be hormones causing my ch to be so bad. I had a complete hysterectomy and it didn't effect my ch at all. It did impact my migraines. I hear ya. I gained 50 pounds on lupron which I was on for 6 months before I ended up having the hysterectomy. What a waste of time that was. I had no idea it would make me gain so much weight. Then I gained weight going on the antidepressents. I had lost 75 pounds dieting but gained it all back due to meds. I was sooo angry!
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Karla
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Re: NEW & Desperate for suggestions
« Reply #18 on: Apr 28th, 2004, 8:33pm » |
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on Apr 28th, 2004, 11:44am, KateA wrote:
As for the narcotics...I was resistant to taking them...my doc said, why suffer, take it when you have bad pain, at least it will help. |
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Damn, I need a new drug. There is no narcotic that will even touch my CH attacks...unless you're talking about a massive dose of Morphine, Demerol, or Stadol thru an IV. I doubt i'll get a prescription for that. Besides, the Imitrex works better (for me).
Unsolved
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KateA
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Re: NEW & Desperate for suggestions
« Reply #19 on: Apr 28th, 2004, 9:08pm » |
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Yes, my doctors always look at me sideways when I ask about the weight gain, adn I think they think the pain must not be that bad if I am concerned about that. Like the other gentleman said, You must not have a cluster headache if that's on your mind, He'd rather have all these other awful things. Obviously he's never been a single woman trying to make it in this society that idealizes the perfect woman, it's hard. Especially living in California. So yes, I am concerned about gaining weight. Everything that's going on is all depressing enough. Throw that into the mix and it's going to be harder.
Karla, my docs want me to go on Lupron and I won't do it. I haven't had kids yet, so we're looking at egg harvesting, that's the current plan. I don't want to have a hysterectomy. how long did you have pain before you did that?
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Re: NEW & Desperate for suggestions
« Reply #20 on: Apr 28th, 2004, 9:54pm » |
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on Apr 28th, 2004, 9:08pm, KateA wrote:| He'd rather have all these other awful things. Obviously he's never been a single woman trying to make it in this society that idealizes the perfect woman, it's hard. Especially living in California. |
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I don't doubt your in pain. It's just that some of us are just trying to stay alive. Nothing else matters.
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Karla
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Re: NEW & Desperate for suggestions
« Reply #21 on: Apr 28th, 2004, 11:10pm » |
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I was diagnosed with endo in 1985. The dr told me that my endo was so severe that he recomended a complete and total hysterectomy. I was 18 and only been married for a couple of months. I was told as bad as I was I would probably not be able to have children. I was in severe pain. I wanted to have children real bad and because of my age I did not do anything about the endo and just continued to live off of 800mg ibuprofin all the time. Well 2 months latter I ended up pregnant with twins. So much for not being able to get pregnant. It only took us 2 months of trying also. 3 years latter we tried for another one and I got pregnant on the first try. I continued to live with the endo until the year 2000. I had my right fellopian tube twist 3 x on me and cut off all circulation to my right overy. I was in extreame pain. Worse than ch or at least as bad as. They did emergency surgery and removed my right overy. They also reconfirmed that I had endo real bad. Since I had excellent insurance I decided to finally at the age of 34 to do something about it. I tried the lupron for 6 months and had no pain during that time. But you can't take it for longer than 6 months. It has side effects a mile long. My hair fell out in clumps. As soon as the lupron was discontinued the pain came right back. The lupron doesn't make the endo inside you go away it just puts you in a state of metapause for 6 months and gives you a break. I thought it would actually receede the endo if I would have understood better I would not have done it. Anyway I decided to go for the hysterectomy since I was done having kids. It was the best decision I made. I have had no metapausal symptoms and am not on any HRT. I wish I would have had it done years sooner. But then again don't want to go into metapause to early. I have had no endo pain in 4 years!!! Life has been good in that area. I wish the best of luck to you.
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Karla
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Re: NEW & Desperate for suggestions
« Reply #22 on: Apr 29th, 2004, 12:01am » |
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Sorry Kate,
Have to agree with Unsolved.
I CAN, even as a guy, understand about weight problems. I went on an OCD-all out Jared the Subway dude thing in the summer of 2001 and lost 25 lbs in the summer. I have kept the weight off because I am a tennis player, I go to the gym several times a week, and when the weather allows, I go for a nice walk.
I am not going to go off on a tangent about weight and junk food and diets, and that people should exercise regularly and if they did perhaps they wouldn't have certain physical problems, and whatever.........
Topamax didn't work. That's a shame because it is good for weight loss.
Unfortanately (except maybe Verapamil), most of the preventatives do have s/e's of weight gain.
In my opinion.....if you TRULY have CHs. If you get them multiple times per day and are not getting relief. If theyare these eye-stabbing, nose running, eye tearing, etc... Then I simply dont think you have CHs. You would say the hell with the s/e's.
This is not to say you have headaches and they are painful. But if your priority is gaining weight vs. suffering CHs. It aint Chs.
-Scott
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KateA
New Board Newbie
I love YaBB 1G - SP1!
Posts: 21
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Re: NEW & Desperate for suggestions
« Reply #23 on: Apr 29th, 2004, 12:13pm » |
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I'm not prioritizing weight gain over getting rid of the headaches, I think you are all misunderstanding me here. I just want to know what I'm getting into, that's all. With these headaches I have no quality of life...no energy, no spunk, no "me" left. I am in so much pain I have lost myself. So in the end, I don't care enough to let it **interfere*** with the treatment, I just want to be prepared because I know that aspect will cause me some stress, that's all. That should make some sense to you all. I have had A LOT going on, so I am trying to know as much up front, instead of just trying things and finding out side effects as I go.
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HypnoticFreddy
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Re: NEW & Desperate for suggestions
« Reply #24 on: Apr 29th, 2004, 12:44pm » |
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Hi Kate,
Unfortunately, with CH treatment, you will have to accept learning side-effects as you go along. It is part of the deal. I hear your pain. Don't for a minute believe I do not think you are NOT in pain.
You must at least try some of the common preventatives. Or the ones that you haven't tried. Look at all the info posted here and on the OUCH website about medical info. Talk to your doctor. Accept that these things are BEASTS. Unfortunately, most of would choose to live w/o meds, but CHs are one of these disorders where medicine is most definitely needed.
-Scott
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