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bubbly81
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new to this
« on: Dec 30th, 2006, 5:53am » |
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Hello my name is Amy and I was recently diagnosed with clusters. The drs put me on imitrex and topamax. The topamax was horrible and I finally got off that. When I get a cluster which is usually every morning around 3 ( I work night shift at a hospital) I get a cluster behind the left eye. I also get very nauseted and have recently been put in the hospital for weightloss, 12 lbs in a week, and extremely low blood pressure and heart rate in the 130s. Also when my potassium gets low and I have to go on potassium therepay.
I have tried imitrex, topamax, predisone, oxygen, cafffeine, reiki, and a lot of narcotics and none of them have worked. They said they can't put me on any other preventatives due to my low blood pressure. My clusters started out lasting for only a couple minutes now they can last for 3 weeks.
Does anyone have any suggestions? I am not a person to call off work but the clusters are so severe that I have been calling off.
My Doctors have no clue as to what to do.. They are out of ideas.
Thank you
Amy
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E-Double
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Re: new to this
« Reply #1 on: Dec 30th, 2006, 9:01am » |
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sorry ypu are in pain!!
do you mean that each attack has lasted minutes and now can last 3 weeks?
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I can't believe that I have to bang my
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But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Guiseppi
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Re: new to this
« Reply #2 on: Dec 30th, 2006, 9:01am » |
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See if they are willing to give lithium a shot. To my knowledge it doesn't affect BP so it might be okay for you. I'm an190 pound male and use 1200 mg daily when on cycle. I ramp up starting at 600 mg and by the end of a week I'm at the 1200 mg a day dose. I use a prednisone taper to keep the beast at bay as it takes about 2 weeks to get the lithium levels up in my blood.
You should probbaly read the oxygen link on the left and give it another try. It HAS to be started at the first hint the headache is coming on. And it needs to be at a high flow rate, 12-15 LPM with a NON RE BREATHER MASK. If you're not getting 100% oxygen it reduces the chance it'll help you. Many people pre maturely give up on oxygen because it wasn't used correctly.
It sounds like you're frustrated, that's common here. With many of the treatments for CH, HOW you use it is as important as WHAT you use. Imitrex injectables versus the nasal spray or the pills. Oxygen being used at the correct flow rate with the correct mask.
Stick around, start reading like crazy and may be you can find something that helps. Wishing you some pain free time...soon! 
Guiseppi
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bubbly81
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Re: new to this
« Reply #3 on: Dec 30th, 2006, 9:25am » |
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thank you for the replies..
Yes i have had an attack that lasted for 3 weeks with no breaks. it would get better but not complete relief. They ended up putting me in the hospital cause i couldn't eat.. Couldn't hardly get my eye open..then they put me on predisone and that eneded that one..
now i am starting all over again. I am trying predisone again.. so hopefully that will work.
Thank you
Amy
St. Louis, Mo
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E-Double
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Re: new to this
« Reply #4 on: Dec 30th, 2006, 9:52am » |
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Amy,
Let me preface this by telling you that in addition to having Clusters, I also have 4 other diagnosed headache types.
1 cluster attack does not last 3 weeks.
It is very possible that you have clusters in addition to migraine.
It is very possible that you have what is known as hemicrainia continua which if you transaltes means loosely.....continuous onesided blah blah 
Could be other things too.
Each HA type can be treated differently and not all are responsive to the same treatment, in fact some HA which present similar to Cluster but differ in duration and frequency can be held at bay by using a particuliar NSAID (indomethacin)
A favor for the inquiring mind.....Though not a true diagnostic test, please take the cluster quiz. See what it comes up with and though we are not doctors, we may be able to help you pick things apart and find relief!
Hugs!!!
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Bob_Johnson
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Re: new to this
« Reply #5 on: Dec 30th, 2006, 12:28pm » |
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Is your doc a specialist in treating complex headache? A general neurologist often lacks training/experience (as many messages here will atest).
1. Search the OUCH site (button on left) for a list of recommended M.D.s.
2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.
3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.
4. http://www.achenet.org/physicians/ On-line screen to find a physician.
5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder" which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
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Then start to educate yourself. With rare conditions, the patient often ends up educating the attending!
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. 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.
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| « Last Edit: Dec 30th, 2006, 1:04pm by Bob_Johnson » |
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Bob Johnson
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Dazed and confused
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Re: new to this
« Reply #6 on: Dec 30th, 2006, 4:01pm » |
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Have you tried Verap? It's been a lifesaver for me but I wouldn't recommend it over long periods as it can have some bad side-effects such as edemas caused by lowered heart rate and very slow pulse (it does for me anyway).
Peace
Trevor
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glen jenkins
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Re: new to this
« Reply #7 on: Dec 30th, 2006, 5:10pm » |
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well amy i`m glen and i do feel bad that you had to join in our club. however ,i`ve have been a suffers since 1990 and went for 5 yrs wrongly diagnosed , finally a got a doctor who listen , sent me for test and decided the best thing for me was lithium.i have had very good results from it in the past. although i consider myself lucky as my cycle seems to take longer to come each time and i only have one every 2nd night but they last on average for 3 to 4 hours and run for 10 to 12 weeks . my last was in march 2005 18 months ago, but after being on the lithium for about 3 weeks , they really are a lot easier to cope with ,so ask your doctor about them alright , if you need someone to chat to about them at times , feel free , i do understand as most here do .hope that helps were all prayering for you and happy new year as well glen glkins@hotmail.com
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thebbz
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Re: new to this
« Reply #8 on: Dec 30th, 2006, 5:42pm » |
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clusterbusters.com?
all the best
jb
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chewy
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Quote:| Yes i have had an attack that lasted for 3 weeks with no breaks. |
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Thats not a cluster.
Have you had an MRI done?
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Jonny
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Re: new to this
« Reply #10 on: Dec 30th, 2006, 11:35pm » |
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on Dec 30th, 2006, 5:53am, bubbly81 wrote: I also get very nauseted and have recently been put in the hospital for weightloss, 12 lbs in a week, and extremely low blood pressure
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on Dec 30th, 2006, 4:01pm, Dazed and confused wrote:| Have you tried Verap? It's been a lifesaver for me |
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Whats wrong here?
Bad advice?
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Dazed and confused
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Re: new to this
« Reply #11 on: Dec 31st, 2006, 4:06am » |
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Bad advice? I also wrote that it leads to low pulse and heart rate. As for blood pressure; mine is 135/70 and I've been on 800-1120mg/day for over three months.
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Dazed and confused
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Re: new to this
« Reply #12 on: Dec 31st, 2006, 4:32am » |
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Just to clarify for Jonny and Amy, I was not offering advice. I simply asked whether Verap had been tried. In Sweden there is no way that someone with Clusters could get Verap without seeing a neurologist and having had a lot of tests. Anyway, it was just a question, not advice.
Peace
Trev
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bubbly81
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Re: new to this
« Reply #13 on: Dec 31st, 2006, 10:09am » |
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Hello.. thank you for the replies.. i have not tried verap.. they told me that its not safe, actually none of the preventatives are due to my blood pressure problems.
I have had a ct and an mri done, both were normal. They can' find anything wrong with me. Other than the clusters.
I am thinkng about changing neurologists. I am supposed to be going to the top in my town but I found a couple on the list on the ouch site I may try.
Thank you again,
Amy
St. Louis, MO
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E-Double
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Re: new to this
« Reply #14 on: Dec 31st, 2006, 10:23am » |
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Amy,
I am really sorry to harp on this BUT I only want to see you get relief from whatever you may have, whether it is cluster, migraine, HC, PH, whatever.
I do not want to see anyone try any unecessary meds if their doc doesn't know $hit about HA and you are being misdiagnosed.
Please clarify>>>
ONE ATTACK THAT LASTED 3 WEEKS or did you mean
ONE CYCLE ( many attacks) lating 3 weeks.
There is a huge difference!
If One attack meaning 1 long horrible headache, it is not Cluster!!!
That is great though Lousy because it is something else!
Different course of treatment!
Clusters and Migraine recieve similar courses of treatment with the same meds in may cases. Preventative and abortive
Like I said before, if you actually have a similar HA (atleast in the same family as CH) then the chances of them being responsive to different meds are likely and you can be HA free within a day or 2 of trying a certain class of meds.
Just looking out for you.
Please clarify the above and guidance will come your way.
This just can not be overlooked.
Best,
E
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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bubbly81
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Re: new to this
« Reply #15 on: Dec 31st, 2006, 10:38am » |
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E,
For about 3 weeks I had a HA.. when it wasn't really bad i just had pressure behind the eye. Usually at night it would become a full blown HA.
Right now I just started predisone. That seems to be working..
Thank you,
Amy
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E-Double
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Re: new to this
« Reply #16 on: Dec 31st, 2006, 10:42am » |
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So you are saying you had 1 headache for 3 weeks.
Sounds like Migraine.
Prednisone is sometimes used to break them as well.
You may have other things mixed in.
Good luck.
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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thebbz
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Re: new to this
« Reply #17 on: Dec 31st, 2006, 7:13pm » |
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Good catch Eric. cluster/migraine can lead to that kind of weight loss. Sounds like a second opinion is in order and I hope that works out for you Amy. I also am leaning to the cluster/migraine. Check out your options and see what another neuro say's.
all the best
jb
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rogerw
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Re: new to this
« Reply #18 on: Jan 5th, 2007, 5:54pm » |
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Amy,
Ask your Doctors if they have heard of a cluster blocker. This worked for me the last time but not this time. It is a shot in the back of the neck and if you want email me and if your doctors do not know what it is i will give you my doctors phone number and maybe your doctor can call mine to find exactly what it is.
rwortman@brightonford.com
Roger
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Best wishes
Roger
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