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        New Message Board Archives >> 2006 General Board Posts >> can I add more?
        
(Message started by: psycofemale0403 on Nov 6^th, 2006, 10:21pm)

Title: can I add more?
Post by psycofemale0403 on Nov 6^th, 2006, 10:21pm

The beast is not letting up at all... I am taking topamax 150 mg per day, prednisone 60 mg per day, darvocet, and 2 10mg maxalts per day.. can I add more? I'm shadowing all day. I'm getting hits at least 4 at night and 3 or 4 during the day. I 'm only getting about 2 hours of sleep at night.. I work full time, and have a 4 and 5 yr old. I am at the end of my rope. I am sobbing as I type. I am afraid of getting addicted to the darvocet, or having withdrawl headaches. The dr. says I have clusters and Severe migranes. After talkin to the Dr. today, the dr thinks the migranes are a result of child abuse.. I am having such a hard time dealing with that..... That was sooooooo hard to hear. I had a feeling though. Anyway.. can I add more to the meds.... or am I overmedicading myself??

~ Lisa

Title: Re: can I add more?
Post by nani on Nov 6^th, 2006, 10:30pm

Aw, Lisa... I'm sorry to hear you're having such a bad time. :(
It doesn't appear that your current meds are helping much at all. I can't comment on the migraines, but darvocet won't help CH much. Also, the pred is meant to be a temporary drug, tapered on and off of while a CH prevent (like verapamil) kicks in. Have you tried oxygen to abort? Perhaps a dr visit to discuss other options is in order. Hang in there. girl....
hugs and pf wishes, nani

Title: Re: can I add more?
Post by BlueMeanie on Nov 6^th, 2006, 10:35pm

Sorry to hear you're having such a rough time right now. I am not by no means an expert on prevent meds, but it sounds like you're already taking too much to me. You hadn't mentioned trying Oxygen and Imitrex. They are about the 2 most popular meds around. Of course nothing works for everyone. Not sure about migraines being caused by abuse. Sound a little strange to me, but I don't know anything about causes of migraines.

Good luck to you.

Title: Re: can I add more?
Post by Linda_Howell on Nov 6^th, 2006, 10:35pm

I am so sorry too hon. Get off the Darvocet. As you fear it will cause rebounds, you could become addicted and it does vitually nothing for the headaches. One less thing you need to put in your body.

As for the Topomax....jeeze that's a hard call. It is not a drug for the faint-hearted as the side-effects are nasty, so I'd sure ask the Dr. if you absolutely NEED to take that. Are you on oxygen? Have you tried Melatonin for the night-time hits?

Linda

Title: Re: can I add more?
Post by psycofemale0403 on Nov 6^th, 2006, 10:43pm

I have tried oxygen before, and it did nothing. The air going up my nose acutally intensified the pain. I tried the oxygen for a month. And, Imitrex, I don't think I've tried that one, I will ask the dr. The only side effects with the topamax I have had is tingling in my fingers and toes. And I have been on it for about a month and a half now. Is there something I should be afraid of? YOU GUYS ARE SCARING ME NOW!

Title: Re: can I add more?
Post by BlueMeanie on Nov 6^th, 2006, 10:49pm

The Oxygen didn't work cuz you where not doing it right. The nose thingy doesn't do nothing for Clusters. On the left of this page is a link for Oxygen info. Check it out !!!

Title: Re: can I add more?
Post by nani on Nov 6^th, 2006, 10:58pm

I'm with Blue. Check out the O2 link on the left first. Then have a look at this from the OUCH site. It lists the meds we find most effective:
http://www.ouch-us.org/medications/medications.htm
Look at threads on the Medications Board about melatonin. It can really help with those nighttime hits.

Title: Re: can I add more?
Post by Linda_Howell on Nov 6^th, 2006, 11:04pm

No one is trying to scare you Lisa, you need to be informed is all.

These are the side-effects that people here who have taken it have told us about. They called it DOPamax. I have taken it for a while and stopped it because I had a hard time rembering things and thought early Altzeimers had set in.

"Burning, prickling, or tingling sensations; clumsiness or unsteadiness; confusion; continuous, uncontrolled back-and-forth or rolling eye movements; dizziness; double vision or other vision problems; drowsiness; generalized slowing of mental and physical activity; memory problems "

Title: Re: can I add more?
Post by Pinkfloyd on Nov 7^th, 2006, 1:10am

on 11/06/06 at 22:21:12, psycofemale0403 wrote:

The beast is not letting up at all... I am taking topamax 150 mg per day, prednisone 60 mg per day, darvocet, and 2 10mg maxalts per day.. can I add more? I'm shadowing all day. ... Anyway.. can I add more to the meds.... or am I overmedicading myself??

~ Lisa

Are you seeing a headache specialist?

1. Don't give up hope. You are getting closer to some answers. At least one's that might provide some relief.

2. The 02 suggestions were very important. The right masx, the right flow rate.....print out the info and bring it or fax it to your doc.

3. If you do have migraines & clusters, the treatments can be very tricky, thats why I ask about the specialist. It's rare enough to have a doc that's experienced enough to properly treat clusters. Even rarer to find one that can handle a complicated case like yours. But take heart...they are out there and knowing your proper diagnosis is winning battle number one.

4. Can you add meds? Sure....but its more likely to get better relief by changing the med stategy to fit both ailments. It can be tricky. Just remember that with each change, even if it doesn't help that much, it will answer more questions and get you one step closer to positive relief.
Examples.....if you just had clusters (as if that wouldn't be enough) then the prednisone and maxalt most likely would be giving you some relief.
If you just had migraines (as if that wouldnt be enough) the davocets and maxalt might be giving you better relief.
Since the migraines *may* have some psychological triggers involved, prednisone (steroids) could very well be playing a role in exaserbating the migraine trigger.
It could be the opiods (darvocet) might actually help with any resulting depression (there are studies that show opiods may actually help with depression) but could be adding rebounds.

If you're still getting tingling with the topamax after a month and a half, you're probably at a dose you wouldn't want to increase, and if its not helping....your doc may want to try a different route.

But take heart, you're getting closer to some answers. Sounds to me like you're under a great deal of stress even without the headaches.
You may want to give Charlies relaxation technique a try first off (anyone want to IM charlie to post it here?)
Also, learning to relax the best you can and breath the 02 at proper rates, are good places to start IMHO.

Then, I'd talk to your doc, or see a specialist that can try to better balance the meds regimen you're on.

Not sure where you are but someone here might be able suggest a specialist in your area, if you need one.

Researching cluster/migraine combos can be tough. You may want to visit Teri Roberts migraine page http://headaches.about.com/

and Dr. Robbins page at:
http://www.headachedrugs.com

Besides all the stuff here and at OUCH.

best of luck...
working full time and raising two kids??? Strong lady...you can do it!!

If I can offer one last piece of advice. I know many people with migraines that have a history of abuse. How much that may play into the migraines, I don't know nor would I venture a guess. All I can say is, please don't be afraid to treat an underlying cause like that if the doc thinks it's warranted. The worst that can happen is that it wouldn't help. The best that could happen is...it could change your life for the better. JMHO.

Bobw

Title: Re: can I add more?
Post by Tata on Nov 7^th, 2006, 2:39am

I'm so sorry you're going through this--I have little ones , too. I've been where you're at and have felt that same exhaustation, fear and desperation. I get the most relief from oxygen, and like a lot of people here, I never got relief from pain meds. I'm curious as to why the Dr has said you have both CH and migraines-- for YEARS I was misdiagnosed with migraines because of having neausea with my headaches--that 1 little thing led to years of useless pain-pills and ER visits. I know how scary this is, especially with kids, but you found the best place in the world for people like us. Keep reading and posting--the people here are an amazing source of support and information. Take care.............Tata

Title: Re: can I add more?
Post by BarbaraD on Nov 7^th, 2006, 5:59am

Ok Lisa -- Topamax worked great on me (my miracle drug) for several years. I had the dose up to 400 at one time (too high), but 300mg kept me out of the BIG hits. I leveled out on 100mg when in low cycle.

Cafergot (and phenergan for naseau) works for me as an abort.

O2 at 10-15lpm works well with a "non-rebreather" mask (no nose thingy). Don't stay on it but about 20 min. Longer is a waste of time and can dry out your lungs.

Melatonin at night (6-15mg) will help you get thru the REM sleep. BUT it takes a while to get in your system so don't give up after one or two doses. It's not instant.

These things are also good for migraines (yep, I have them also).

Hope things get better soon.

Hugs BD

Title: Re: can I add more?
Post by rickyshot on Nov 7^th, 2006, 8:57am

I too suffer complicated migraines along with episodic CH. I could cry listening to you. I have been there. Nothing like having a kip 8-10 followed by a lingering migraine which DOES NOT GO AWAY all fuckin day......... >:(

I have been hospitalized when things are getting as bad as you or worse with steroid tapers and DHE both as IV meds.

Finally after 22 years I found the combo that works for me.

DHE injections sometimes coupled with Prednisone tapers.

Oxygen for a hit as instructed on the side link here. Print and take it to your neuro .

Melatonin for night time hits.

I take sibeillium for prevention.

I also did busting this year with good results. For info on that go to clusterbusters.com. This is controversial and I would use that as a last resort but be informed.

Some people here have the verapimil, lithium, imitrex cocktail which works for them. It did not work for me. I will let them post. There are many of them. Perhaps it will work for you.

Title: Re: can I add more?
Post by Bob P on Nov 7^th, 2006, 9:48am

The tingling is called paresthesia. About 13% of topomax users experience it as a side effect.

Title: Re: can I add more?
Post by psycofemale0403 on Nov 7^th, 2006, 9:54am

I love you all.. I have to print this.. dry my eyes.. and get my late as hell ass to work! I'll post back later!

Thank you.

Title: Re: can I add more?
Post by FramCire on Nov 7^th, 2006, 11:28am

Just a few notes (some are repeats):

!. Topamax: If you aren't getting relief, I would consider tapering off of ti and trying something else.

2. Melatonin (I use 9mg) can be a big help with nighttime hits for many people.

3. Did you start at 60mg of prednizone? Are you going down off of it? Make sure you pay attention to the tapering instructions.

4. THE OXYGEN INFORMATION ON THE LEFT IS CRITICAL for O2 success. A non-rebreather (write this down and go find one) mask is critical. A clustermasx (I think it is like $25) has been tremendous for me. Make sure you get the flow of O2 correct. It shouldn't take longer than 15 minutes to get relief. (it has never taken more than 5 minutes for me with my clustermasx).

5. Ask about verapomil.

6. Imitrex is the same type of drug as Maxalt. If you are taking Maxalt and it doesnt give you good relief try imitrex (I suggest injectable). If Maxalt works for you but not fast enough, ask about the MLT (dissolves in your mouth instaed of pill).

There is much more this is just my suggestions.

Title: Re: can I add more?
Post by Linda_Howell on Nov 7^th, 2006, 11:31am

Quote:

Not sure where you are but someone here might be able suggest a specialist in your area, if you need one.

She lives in Ill. Bob. That should be close to someone who can direct her to a good Doc. ;)

Lisa, Here is Charlie's relaxation technique.

Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this 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 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.

Charlie

Title: Re: can I add more?
Post by psycofemale0403 on Nov 7^th, 2006, 1:03pm

Thank you thank you again, I have tried Charle's technique, and it has worked a few times. This year has just been my worst year. I have never had them this bad before. I'm ususaly not this bad so early in my season. I feel like a wuss.

Also, I have tried varapamil, with no success. I forgot to mention, I also have occular migranes.

I'm hopeless, I know.

Title: Re: can I add more?
Post by rickyshot on Nov 7^th, 2006, 7:49pm

You are not hopeless. You are a tough nut to crack like me. You gotta keep trying different combos of meds. You said yu tried verapimil with no success. How about verapamil and lithium combo. Many people have succes with that for prevention. Also Imitrex injections for hits and people use 3 shots with one pack. Have you tried DHE? That alone or with a combo with Prednisone taper sometimes work. You need to find a good neuro to start over with.
I have complicated migraines which include BAM, occular , abdominal and classic ones. I have had migraines that lasted for weeks. I have had paralysis and stroke like symptoms. You name it. I find the migraines harder to treat than the CH. Most CH hits respond to oxygen or meds. Only the kip 8-10's seem hopeless for me. Thank God they are not too often.

Title: Re: can I add more?
Post by kissmyglass on Nov 7^th, 2006, 7:51pm

DONT take Maxalt and Imitrex together (within 24 hours at least)

HAng tough,
Kev

Title: Re: can I add more?
Post by rickyshot on Nov 7^th, 2006, 7:53pm

PS Unless your migraines are psychosomatic which I doubt judging by the sound of them and complications that shit about child abuse sounds like fuckery to me. Get a good neuro stat. You are not nuts, psycho etc. You need a good doctor. If you are having issues with child abuse that might be compounding the situation but ch and migraines are real neurological events and need to be treated on their own. For other issues seek other medical care ie psychiatry etc........

Title: Re: can I add more?
Post by psycofemale0403 on Nov 7^th, 2006, 11:22pm

Hmmmm. I don't know about the whole bull shit and fuckery thing about the migranes.... my mother used to bash my head into a wall every day, break glass candles over my head, and plastic cups over my face. I've four different dr's tell me that would definately cause migranes. I don't know, Ricky.. maybe I just don't understand what you mean. I'm sorry If I offend you .. But if your saying you think it's all in my head.. you'r kind of offending me! uh. .... no offense.. ;)

I am definately looking for a new neurologist. I'll take all the opinions I can get. Thank you for all the advice, I'm printing them all, and bringing them with to the doctor.

Title: Re: can I add more?
Post by Jimi on Nov 7^th, 2006, 11:32pm

No, I think she is saying that she thinks your Dr. is a nut job. Not you. We hear these things all the time. What he has told you is crap. Hopefully, the new Neuro will be on top of clusters and will help you more than that uninformed doctor.

Title: Re: can I add more?
Post by Pinkfloyd on Nov 7^th, 2006, 11:44pm

on 11/07/06 at 11:31:09, Linda_Howell wrote:

She lives in Ill. Bob. That should be close to someone who can direct her to a good Doc. ;)

hmmmm....Illinois huh?

Well, ok then, check out Dr. Robbins site. If you're interested, drop me an IM or email.

Bobw

Title: Re: can I add more?
Post by psycofemale0403 on Nov 7^th, 2006, 11:44pm

Thanks for clearing that up Jimi!

[smiley=hug.gif]

Title: Re: can I add more?
Post by Linda_Howell on Nov 7^th, 2006, 11:45pm

I agree with Jimi. (did I say that?)

We're here to help, not hurt Lisa.

Title: Re: can I add more?
Post by Woobie on Nov 8^th, 2006, 12:15am

HEY
You live in St Charles???

I work in Elgin at the Grand Victoria -

i have non - rebreather masks if you need one...... we could meet somewhere......

let me know.
I could also bring Ramon's O2 and show you.......if you need me to

I'm close - let me know what you need and I'll see what I can do.

PM me or whatevaaaaaaa

woobs :-*

Title: Re: can I add more?
Post by Linda_Howell on Nov 8^th, 2006, 2:10am

Lisa,

Let me introduce you to Tina (woobie) if she lives near you and you don't take her up on her offer...you will miss out on one fantastic little lady with fuzzy slippers and likes to clean up after everyone... Trust me. lol

Title: Re: can I add more?
Post by rickyshot on Nov 8^th, 2006, 7:30am

OMG No. I did not mean that I think your headaches are "all in your head" as in psychological problems. I thought that was what your doctor inferred. If you had head injury due to abuse, or some type of accident, sure that could be the cause of your headaches and those causes are physical and creating events in your head which are the migraines or CH or both. I have an old head injury hit by a truck at 6 years old and had a fractured skull. Was that the cause of my problems. I am sure yes. What I am saying is let no doctor tell you it can't be that bad or that it is psychsomatic. That is what I meant by fuckery. Your cause is physical for real and you are not imagining it or exaggerating. What I want for you to know is to keep searching the medical community unitl you find someone who takes you seriously. It took me over ten years. I suffered greatly and was convinced that I was a nut job. I don't want that for you.

Funny thing when I finally found the neuro who took me seriously , he told me to take my headaches seriously particulary the migraines which could lead to stroke. And guess what three years later I suffered a TIA (mini stroke) from a long bout with them that was particularly nasty.

I am not trying to scare you or minimalize your situation. I HEAR you and think you misunderstood my post.

Bottom line Find you a good doc and start over. There must be a line of treatment that can help you control them. There is no cure but control and I hope you get your life back.

PS about what happened to you that is horrific. :'( You have my prayers for healing in that area.

Title: Re: can I add more?
Post by psycofemale0403 on Nov 8^th, 2006, 2:56pm

BIG FAT SQUEEZY HUG RICKY. [smiley=hug.gif]

Title: Re: can I add more?
Post by psycofemale0403 on Nov 8^th, 2006, 2:58pm

SOLD ME ON THE FUZZY SLIPPERS!