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Topic: Desperate (Read 1049 times) |
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Teesa
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I don't even know where to begin. This is my first post. I was lurking around last night reading alot of the posts here and got very emotional. As I am right now. I had no idea what I was going through, until recently. I had an idea about it last year and thought it had something to do with my high blood pressure because I was 35 at the time and very overweight. They sent me to a neurologist who put me on Verapamil, Imitrex pills, and Imitrex injections(uselesss) along with the Metetroporol (sp) After 6 months or so one of the Doc's at the practice told me I could go off them, since I had lost 50 lbs and was controlling my diet and started strength training and walking 2 miles a day. Well now....I have been under a tremendous amount of stress and the pain is back. Others think of it as a Migraine and tell me to go lie down in a dark room..HA!
These attacks hit without warning. They begin as a pulsing throb on my temples that continues to squeeze and get more intense. Sometimes the intensity of the pain lasts for 5 - 10 minutes...sometimes, Like the last few nights, probably because of all the stress in this household They have lasted for over an hour. Accompanied, by dry mouth, sweating and vomiting. Although this is rare. I live in fear of when the next one will come. My regular doctor told me I should never have gone off either the Verapamil or Metatoporol. And also put me on Xanax to calm my nerves. Does Anxiety bring them on? It seems whenever I get a certain feeling like a light throbbing..I tend to freak out. I am new to this and feel a tremendous releif that i am not alone. Please bear with me that I don't know all the lingo yet. Others do not understand that these CH leave me unable to talk, or concentrate on anything. I lock myself in a dark bathroom..run the water and rock. this is so my kids dont bug me! lol. I dont notice alot of the "droopy eyes" you guys talk about...I guess its because i tend to close my eyes and do the deep breathing that I learned in childbirth classes. I have had them several times a day in the past week. I end up going to sleep at 4 or 5 am because I am terrifiied. I am not a baby, and have an extremely high tolerance for pain. Going through painful chilbirth labors of 29 hours, and gallbladder pain that lasted for 8 years, finally removing my gallbladder with over 100 stones. I think I may be taking too much of the Xanax for my nerves. They put me on some time release verapamil....but it is not doing a damn thing. Does stress bring this on? I babysit a 1 year old and my 4 year old 3 days a week, along with another 8 year old and my 12 year old. Also along with the 4 and 12 year old at home..My husbands ADULT 21 year old (Who is a ROYAL BITCH and wont acknowledge My 12 yr old or myself)and 19 year old live with us PLUS my 80 something disabled inlaws. Ok I am so sorry I have rambled on and on. I started this post in tears, but am glad that I have everything off my chest. Anything you guys can reccomend would be great. My sister even told me to visit an Allergist. has anyone done this? I did remember reading something about Histamines. I go in for a detailed MRI and a MRA on Monday morning, Just for assurance. I am scared of a stroke or anyeurisms.
Thanks for reading this far, and sorry about the rambling.
Teesa in AZ
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Superpain
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Re: Desperate
« Reply #1 on: Mar 28th, 2004, 6:55pm » |
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Hey! You're right down the street from me!
Stress and anxiety seem to be a symptom not a cause...
Where is your pain located? Is it just on one side? Do you have a good neuro that knows about clusters? who is it? Have you been diagnosed with ch?
Sorry you had to end up here, but now that you've found this place you should be able to educate yourself to better deal with the doctors and find out wtf is going on, and hopefully get it taken care of.
Without all the reasoning and such, describe as accurately as possible the exact details of the pain, duration, how many times a day, etc...
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| « Last Edit: Mar 28th, 2004, 6:56pm by Superpain » |
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Chris
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Giovanni
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Re: Desperate
« Reply #2 on: Mar 28th, 2004, 7:06pm » |
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Hi Teesa,
Have you taken the cluster quiz on the button to your left? If so, what are the results.
Typically a cluster headache sufferer has cycles if he/she is episodic or continuous if they are chronic. The cycles come on a fairly regular patten for some and at random for others. For example, mine usually starts in late February and last about 5 months. During this time I have numerous headaches which comes usually during the same time of day and night. As the cycle progresses and towards the apex, the headaches become more numerous and painful.
If the particular headache is above a certain "Kip" level on the scale (see button to your left), laying down and being quiet is not an option. One will pace or do the "dance" as we call it. There are a number of members here that have both migraines and clusterheadaches. The headaches usually last anywhere from 30 minutes to two hours for most of us.
You inquired about stress starting this sequence and I would answer probably not, but if in a cycle the headaches might become more frequent due to the stress or other factors. These attacks usually do come without much warning and increases to the apex within just a few minutes. They will go away on their own even if nothing is done to abort just as suddenly as they appeared.
A lot of us here do use verapamil, imitrex injections and other medications. The deep breathing thing that you mentioned helps me. Oxygen at a high flow rate also works for a lot of us.
It sounds to me that you need to be under the care of a neurologist who specializes in "headaches". The MRI is probably a good step to rule out any other causes, etc.
Keep us advised on what you find out.
Good luck,
John
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t_h_b
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Re: Desperate
« Reply #3 on: Mar 28th, 2004, 7:15pm » |
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Yes, you need to make sure you have Clusters by going to a good neurologist who specializes in headaches with a detailed "headache diary". Clusters don't usually last ten minutes or less and as far as I know almost all true CH sufferers have attacks with stabbing, burning eye pain. Imitrex injections don't help everyone but they help many more than they don't help. I hope you don't have these damned things and that what you do have is more easily treated.
As far as the problems in your family, you should consider seeing some sort of counselor and involving your husband if he's willing. You might not be able to change the situation you're in but if you can't, you still can change your response to it.
Good luck to you and keep us updated. 
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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Teesa
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Re: Desperate
« Reply #4 on: Mar 28th, 2004, 11:08pm » |
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Thanks to everyone who replied to my post. Sorry again for the rambling...I don't usually go into detail about my personal life, I guess I was venting. The Neurologist I saw last year told me they were cluster headaches as did my regular Doctor. They begin with a squeezing near the temples, kind of like my head is being squashed like a grape. Then build up in about 3-4 minutes to an intense squeezing unbearable pain. It is impossible to lie down, talk, etc. Usually I pace, rock, shake etc. (this must be what you guys call "The Dance". Childbirth and over 100 gall stones were not as painful as this. The pain usually subsides the same way it came..the squeezing lessens to more of a throbbing then most of the time I am left with a mild ache that subsides within half hour at times. But friday and saturday it had lasted hours. It may have been a combination of the meds, smoking, having 1 beer, stress or whatever that brought on those extra long episodes. it is imposible for me to sleep laying flat, because I feel that it would be worse. I feel like "the Princess and the Pea" lol! Piling up the pillows. I did read from another poster about trying to redirect the pain into your hands,feet etc usuing heat. This has eased up some of the symptoms if I can catch it before it gets full blown. I turn on the tap in the tub to as hot as can be, and plunge my feet in them. For some reason, doing that helps to ease up some of the pain temporarily. i am thankful for everybodys input, and will post ASAP when I find out about the MRA and MRI. By the way, are these scary? Also anyone know of a good neurologist in the Phoenix/Glendale/Peoria area? I diddnt care for the one I saw last year.
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Superpain
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Re: Desperate
« Reply #5 on: Mar 28th, 2004, 11:38pm » |
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Beer is a surefire way to get an assripping headache for me.
You say "temples"... Both temples? If you are getting pain on both sides of your head there is almost impossible that these are clusters.
Cluster headaches will be isolated to one side of the head, around the eye, temple, jaw, even ino the teeth, above the ear region, and sometimes toward the back of the head, even down to the base of the skull. Although there are cases of ch's switching sides, the pain is always on one side only, otherwise it's not ch.
I know what your going through if they are ch... Had em for 18 yrs and untill I found this bbs a week or two ago, I had never heard of anyone else that had them... I'm getting hit like a freakin punching bag right now. Well, not RIGHT NOW, cuz I wouldn't be typing, but you know...
I'm with you on the sleep thing too. I'm thinking about setting up camp in a chair and ottoman tonight. Everytime I even think about laying down I get hit.
Have you read the info about O2? It is our savior, or at least most of us. See if you can get a sript for an O2 setup with a highflow regulator and non rebreathing mask. If you can't, I can help you get setup with an alternate Oxygen source, which works very well and is 1/5 of the price. But if you have insurance, which it sounds like you do, get medical O2 and have the insurance company pay for it. Ask for it tommorrow! Seriously! You'll thank me when you knock that first headache out in just a few minutes! BAM! It's gone...
I don't know about any good doc's in this area ( I live near 17 & Peoria). I know of a few pain specialists and headache specialists, but they are very expensive, and from my experience with doc's over the past 18 yrs, I want someone that is referred for clusters specifically. It's very hard to find a good doc, or even a neuro that knows their shit about clusters!
But I got referred by a fellow clusterhead here in town to a neuro doc in Ahwatukee... I know it's a drive, but from the sounds of it he's worth it.
The office is called
Foothills Neurology
(480) 961-2365
4530 E Muirwood Dr Suite 111
Phoenix, Az 85048
The doc I was referred to is Stuart Hetrick DO, and he's a neuro too. They also have another headache specialist doc onsite there too. I've got an appt april 6th and will let you know how it goes.
But I'd suggest going ahead and making an appt asap as you may have to wait 2-3 weeks to get in.
And GET THE O2, whatever you do! You should be able to abort most, if not all headaches within minutes with O2. It's a wonderfull thing!
If you need any more info, or if I can help you at all private message me anytime.
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Chris
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Thorns
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Re: Desperate
« Reply #6 on: Mar 28th, 2004, 11:44pm » |
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on Mar 28th, 2004, 11:08pm, Teesa wrote:| They begin with a squeezing near the temples, kind of like my head is being squashed like a grape. |
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Just curious, you mention temples as plural. Does this mean both sides of your head?
Quote:| Childbirth and over 100 gall stones were not as painful as this. |
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Finally, there is proof for me to show my girlfriend that this is the worst pain ever!
I would stay away from the alcohol b/c they tend to trigger CH attacks for most of us in cycle. It is a little odd that imitrex shots did not work. Although nothing is ever 100% here. The hot bath trick works for me sometimes if it is less than KP5. Hang in there and definitely take the quiz to left. Let us know how your appt. goes. The MRI isn't too bad just a little knocking and its over in about 45min. I've only had a problem staying awake through mine. 
Good Luck,
Thorns
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Teesa
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Re: Desperate
« Reply #7 on: Mar 28th, 2004, 11:45pm » |
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I also forgot to mention...My mouth gets superdry, but this may be due to the breathing exercises I learned in childbirth classes. I have no idea if this is a sympton or not. Also I remember Friday, I broke out in a sweat around my hairline, face and back of the neck. I know these are not migraines, and I know they are also not tension or sinus headaches. Like I said..I am new to all this, so please bear with me and the lingo. The Cluster quiz I took and the other links I have read about confirmed my Doctors diagnosis. I have had them everyday this week. Around 2pm. and sometimes a few more episodes after that, than again peaking at night. I am so glad I am not crazy and there is help out there.
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Superpain
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Re: Desperate
« Reply #8 on: Mar 29th, 2004, 12:16am » |
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But are they localized to one side of the head?
How long do they normally last?
So your having like 5-7 per day?
I get a coppery taste in my mouth sometimes. And I sweat during real bad ones.
Have you been to the ouch website? If not check it out too. Lot's of great info there too.
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Chris
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Filbert
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Re: Desperate
« Reply #10 on: Mar 29th, 2004, 3:53am » |
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Hi Teesa
Welcome to this site but sorry that you are suffering so much at the present time.Do you get the pain on both sides of your head at the same time?If you do it doesn't mean for definite that its not CH. There are extremely rare cases of people suffering from CH on both sides at the same time [I can't imagine the horror of that] indeed a young woman in the UK has just been diagnosed with exactly that by Prof Goadsby[one of the UKs best CH neuros]. Strangely enough she didn't get a positive response from Imi injections either.Anyway I hope you can get some relief soon!
Filbert
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Teesa
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Re: Desperate
« Reply #11 on: Mar 31st, 2004, 2:56am » |
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.Do you get the pain on both sides of your head at the same time?If you do it doesn't mean for definite that its not CH. There are extremely rare cases of people suffering from CH on both sides at the same time [I can't imagine the horror of that] indeed a young woman in the UK has just been diagnosed with exactly that by Prof Goadsby[one of the UKs best CH neuros]. Strangely enough she didn't get a positive response from Imi injections either.Anyway I hope you can get some relief soon!
Filbert [/quote]
Yes ...it is like my head is in a vice grip. I asked the doc about it, but he also told me they can occur on one side with some jaw pain, or on both sides. Today has been a very good day for me. They upped my verapamil 120 extended release, 2 x a day. I am hoping that tonight I will be able to sleep peacefully. Ty for your help.
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Teesa
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Re: Desperate
« Reply #12 on: Mar 31st, 2004, 3:02am » |
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Chris AKA Superpain:
Since we live closeby..( We are off the 101 and 67th AVE) We (my husband and I) would like to talk to you more in detail about these cluster headaches. How he can support me etc. My email addy is Teesa2you@hotmail.com
I would add you to the buddy list, but I am not sure how to do that here lol.
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pubgirl
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Teesa
Superpain is right.
To be strictly accurate (as it stands at the moment of course) cases of a full CH attack being on both sides at once are almost unheard of. I say that because truthfully, Filbert's post contains the only reference I have ever read about a CH attack being two-sided at the same time. That doesn't mean I doubt what he is saying it's just that it seems currently to either be rare or unique even.
The definition of CH (and other TAC's) still includes the term "strictly unilateral" (i.e. only on one side at a time but can switch sides) That is usually what is meant by both sides.
I would certainly reexplore the diagnosis with a neurologist who specialises in headache conditions as there are others which would have the symptoms you describe. Classic CH would not be the first suggestion for a diagnosis IMHO (not a doctor of course) for someone having several attacks a day, on both sides, some only lasting a few minutes, combined with nausea and vomiting and a liking to be in the dark. You also don't mention any of the autonomic features which are present with CH e.g. eye watering/drooping/reddening or nose running or congested.
On the histamine question. Antihistamines e.g. Pizotifen can be very effective indeed in preventing many of the migraine types (which of course may be what you are suffering from) but most Ch'ers don't find they work.
I hope you get something sorted soon as the pain is too much to bear if life is complicated too.
Wendy
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| « Last Edit: Mar 31st, 2004, 4:05am by pubgirl » |
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Filbert
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Re: Desperate
« Reply #14 on: Mar 31st, 2004, 4:20am » |
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Just like to add Teesa that Wendy is right i've only heard of one person and I can only add to previous advice to get everything checked out!
Filbert
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Teesa
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Re: Desperate
« Reply #15 on: Apr 6th, 2004, 12:29am » |
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Thanks all for your support and help. the verapamil seems to be working, but I hate the side effects. I will post again after friday. Thats when I see the neuro.
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bubbarube
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Re: Desperate
« Reply #16 on: Apr 7th, 2004, 12:53pm » |
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Teesa, Hi! I am new to this site also. The thing I,m not new at, is the monster that is waiting to show its ugly face again. I personally dont suffer from CH's but my husband has suffered for 20 out of 26 years of our marriage. We have went to many Dr's. About 7 to 8 years ago we found a Dr. that specializes in headaches. The bad part is he moved from 3 hours away from us to 5 hours away. We still continue to Dr. with him. As far as the stress or nerves my husband's experience is it doest matter. They also said smoking affected it well he smoked 3 to 4 packs a day till 99 now a non smoker, no change in cycles. We drink beer on ocassion, and for 20 years during a cycle he give it up totally until 2 weeks ago, he drank 2 beers CH started, he paced, did alot of cussing through it, but 40 min. later it was finally over. Later that night we were invited to a b-day party for a good friend so he said to hell with it im going to have the damn CH"s anyway, im drinking a beer or 2 well 6 beers later no CH. So for him, {not everyone at all} it seems it really doesnt matter what he eats, drinks or does if the monster is going to appear it will. Dont mean to ramble on but if you would like to e-mail me that is just fine. If I can help you or your husband as the supporter with any advise I would be more than happy to try, as when these first started with my husband we did the MRI and all the tests. And to be quite honest up until about 6 years ago I still was in utter horror every CH thinking the worst. Now we work through them the best any of us can. Hope the verapamil continues to work, and you get some relief soon. my e-mail address is rhonda2@otecom.net Be glad to help if only just to say one comforting word, as we all need those every once in a while!! Debbie
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mynm156
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Re: Desperate
« Reply #17 on: May 2nd, 2004, 6:59pm » |
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Hey Teesa,
As a fellow CH from AZ. I feel your pain and send my best wishes to you.
As far as I can tell you seem to be having most of the symptoms as we know them but as we are all different and different meds work for some and not others suffice to say why cant some of the symptoms be different from others.
I can wake up with an 8 kip and want to die and then be forced to try to work with a 3. I work in healthcare specializing in Critcal Care and sometimes cant stop and roll around on the floor pulling my hair out and screaming. I do thank god that my neuro's office is in the same hospital so I often run up and say HELP IMITREX NS or IM.
Good luck keep me posted.
MYNM156
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kolinshaw
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Re: Desperate
« Reply #18 on: May 2nd, 2004, 10:54pm » |
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Teesa, I honestly feel you should seek a second opinion with regards to your diagnosis. What you are describing doesn't sound like CH to me. Personally I feel as if the pressure is inside trying to explode outwards, not the opposite. And if it isn't CH then I would want to know what it was.!! All the best in your search. Kol
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In times of trouble we turn for help to friends who we think may care, but it's in times of trouble that we find most of our friends not there..!
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