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        New Message Board Archives >> Medications, Treatments, Therapies 2003 >> General symptoms question
        
(Message started by: LSUnut on Sep 13^th, 2003, 12:06pm)

Title: General symptoms question
Post by LSUnut on Sep 13^th, 2003, 12:06pm

I'm relatively new to the CH experience (in the midst of my second full season). Whenever, I feel the onset of a CH coming sometimes the pain radiates down the back of my neck and into my shoulder and chest. Sometimes my chest on my CH side tightens up and almost feels like a heart attack, but my pulse rate usually doesn't change. I also will sometimes have an involuntary twitch 2-3 times in different locations ie. leg, knee, arm. Are these symptoms typical? My neuro is very nonchalant about CHs. After my diagnosis his reply was simply, "Those things are terrible I'm sorry you have to deal with them." He didn't really educate me about what to expect or how to deal with the situation. He just gave me some meds and said come back and see me if you need to. I've learned volumes more from this web site, but some personal experiences or known possible symptomatic effects would help greatly, Thanks. ;D

Title: Re: General symptoms question
Post by BobG on Sep 13^th, 2003, 1:51pm

Quote:

Are these symptoms typical?

IMHO, no. The pain of a cluster headache will be in your temple, eye, nostril, and may also be felt in the teeth/jaw.

Please hit the 'cluster quiz' button on the left side of the screen and take the test and let us know what the results were.

Your doctors sounds like he knows nothing about cluster headaches but won't admit it.

What meds did he give you?

Are your attacks always on the same side?
Does your eye water and nose run during an attack?
Does the pain wake you from sound sleep?
Do you feel a need to be up and moving or can you lay down and sleep through it?
How often do the headaches come on and how long do they last?
Does alcohol trigger an attack?

Please let us know more about yourself. We can offer advice to get you through.

Title: Re: General symptoms question
Post by LSUnut on Sep 13^th, 2003, 2:09pm

I didn't mention the common symptons, I didn't think it was necessary. Of course, the pain is always on my right side, my eye waters, my right nostril becomes congested and runs, and I even get a very hot sensation in my right ear and cheak. I've done the dance at 2:00 a.m. after sleeping soundly and prayed for death and then missed work from the sheer exhaustion of the previous night. The attacks last for 40 min to an hour and laying down is not an option. I usually pace the floor holding an ice pack to my neck (a small lump usually appears at the base of my neck on the affected side. I've read similar comments from others but wasn't sure what it was). What I mentioned were just some other symptoms that I sometimes feel. It is a neurological disorder so I'm sure there are some generally uncommon affects that are common to how each of us suffers. BTW, the doctor gave me depakote and imitrex to help. Both seemed to help, however, after a couple of months of the depakote I quit taking it because it caused other problems. I was only wondering about other symptoms other than the commonly known ones. ???

Title: Re: General symptoms question
Post by floridian on Sep 13^th, 2003, 3:05pm

The last two or three years, I have gotten twitches in my feet and calf muscles - these occur only in my cycle, and are often accompanied by tingling in the brain. Usually, these twitches are on the opposite side of my cluster spot. I also get irregular heart beats, which start towards the end of a cluster cycle and sometimes continue for a month or two. I had a heart work up when my irregular heartbeat problem first appearted (Holter monitor, doppler ultrasound, treadmill stress test). The only thing that showed up were the arrythmias, and those were not considered serious.

Neck pain is a common symptom as a cluster starts up. Its possible that in a small group of people, this goes from the neck into the chest. If the chest pain is on the right side and your heart rate is steady, then this probably neuralgia or a muscle cramp, not a heart condition.

You are right when you said that this is a neurological disorder, and the symptoms will vary. Where does the cluster headache syndrome end, and other weaknesses that are aggravated by the CH begin??

Title: Re: General symptoms question
Post by BobG on Sep 13^th, 2003, 4:17pm

Thanks for clearifing for me. All your other symptoms are cluster for sure.
The chest tightening....is it after you take Imitrex? That is one side affect of that drug.
The twitching part has me stumped. After stopping the depakote did the twitching continue? Many people here are taking verapimal. Have you tried it? Oxygen?
Maybe someone like floridian with the same symptoms will see this and jump in. Keep watching this spot or post it over on the general message board.
Hope you find a solution soon.

Title: Re: General symptoms question
Post by Hound_Dogg on Sep 14^th, 2003, 11:43am

One suggestion...You say you get a "pain (that) radiates down the back of my neck and into my shoulder and chest. " "Whenever, I feel the onset of a CH"....

Since it occurs at the start of the CH, it may be from a spike in your Blood Pressure that's causing the radiating pain. Your Blood Pressure will rise to high levels during pain of this type. The increase in Blood Pressure & anxiety could cause chest pain.

Not to worry you (I'm not a doctor, but I played Doctor when I was 5 years old), but it could be an early warning sign that your cardio-vascular & blood pressure need a check-up.

I wouldn't mess around. Get to either a Cardiologist or another competent neurologist.

Jim

Title: Re: General symptoms question
Post by Bob_Johnson on Sep 15^th, 2003, 5:29am

Suggest you get one of these books: much more organized way of learning about your treatment options.

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

Title: Re: General symptoms question
Post by 5-string on Sep 15^th, 2003, 8:31am

Hi there Lsunut,
Sorry you got cluster headaches,they really suck.
I just started with the neuro/prescription phase myself after 4 years treatment free.(not recomended btw). I was given Imetrex nasal spray,verapamil, and oxygen. I hav'nt felt any side effects yet. And taking the verapamil every day seems to be keeping this bastard at bay for the most part.
I do have a problem with my legs twitching.They prevent me from falling asleep on a regular basis. I've had this problem for years so I know it's not a side effect from meds.
Have you had your thyroid checked? might want to do that.
Good luck with you research here.welcome to the sight,
...Mark....

Title: Re: General symptoms question
Post by taraann on Nov 5^th, 2003, 3:49am

Well this thread was started in Sept......but maybe you are still hanging around so I will answer anyways. I am currently getting physical therapy for tightness and pain in my neck that has now radiated to my shoulder and down to my chest (all on the right side which is my cluster side) the PT told me all those muscles are attached so if a muscle is aggrivated enough it will affect it far down the whole nerves and muscle

Title: Re: General symptoms question
Post by sandie99 on Nov 5^th, 2003, 7:34am

LSUnut,
in my case, the ch pain stays in the area of face: mostly eye, temple and chin. But the side effects I get from pain medication and preventing medication can be anywhere.

Ch is new to me, too!

Best wishes & PFdays,
sandie99