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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> HELP!  too many new things in one day!
        
(Message started by: MinxKittten on Apr 10^th, 2008, 2:13am)

Title: HELP! too many new things in one day!
Post by MinxKittten on Apr 10^th, 2008, 2:13am

my hubby is a sufferer....you can see my post on supporters...

we yesterday we went to the doctor and today he implemented alot of the new stuff, but there were so many changes today....and he had one of the worst headaches EVER, its hard to know what was the WRONG thing.

normally he just takes verapimil....240

today he added topamax

he started oxygen

he started working out (lifting weights)

and i gave him a new protein drink, cuz he can't eat and he's starving, and with working out, i thought maybe a protein drink would help him.

arrrrggghhh, now WORSE!!!

how do we know what's the culprit????

please give your advice asap, don't know what to do. :'(

Title: Re: HELP! too many new things in one day!
Post by Karla on Apr 10^th, 2008, 6:17am

oxygen is harmless as far as causing ha is concerned. HA is not a known side effect of topamax either. So my guess is maybe he pulled a muscle working out and strained himself or it was just coincidence. Sounds like a sound regimen to me to be taking.

Title: Re: HELP! too many new things in one day!
Post by Qazpur on Apr 10^th, 2008, 7:12am

on 04/10/08 at 02:13:29, MinxKittten wrote:

he started working out (lifting weights)

strenuous physical exercise can be a nasty trigger for some - i have to stay well away from the gym when in cyle.

Title: Re: HELP! too many new things in one day!
Post by Kevin_M on Apr 10^th, 2008, 7:26am

From your post on the supporter's board.

on 04/10/08 at 00:04:06, MinxKittten wrote:

we went to the doc on tuesday,

he added Topamax to his daily verapimil, doc wanted him to up the verapimil to 480 but he didn't want to.

His normal verap he's taking is 240 and it has not been working. My doc chose to up the verap also before going to another drug and it became effective, but it takes time to get it into your system. I've not taken Topomax but it may probably take time too, or the amount might need to be adjusted yet to see if it will be effective for him.

Quote:

we got the scrip for oxygen, had it delivered late last nite. found a respitory therapy supply company that was VERY AFFORDABLE, 2 canisters and 2 masks for $50 total!!!

doc said 7L/min for 10 min at onset, does that sound right?

also we got 2 masks, one says medium concentration mask and one says high concentration mask with a little bag hanging on the bottom, which one should he use???

You can get plenty of advice about oxygen here. I see the flow rate to be low and a non-rebreather mask should be used.

Title: Re: HELP! too many new things in one day!
Post by MinxKittten on Apr 10^th, 2008, 10:05am

what should the flow be and what is a non rebreather mask?

Title: Re: HELP! too many new things in one day!
Post by brewcrew on Apr 10^th, 2008, 10:20am

Read the "oxygen info" link at the left for answers to oxygen questions.

How in the hell does he have the energy to work out but not have the energy to eat?

Title: Re: HELP! too many new things in one day!
Post by vietvet2tours on Apr 10^th, 2008, 10:43am

on 04/10/08 at 02:13:29, MinxKittten wrote:

::)

Title: Re: HELP! too many new things in one day!
Post by MinxKittten on Apr 10^th, 2008, 10:49am

on 04/10/08 at 10:20:51, brewcrew wrote:

How in the hell does he have the energy to work out but not have the energy to eat?

its not that he does not have the energy to eat, its that every time he eats, within an hour he has massive cluster headaches. small meals or big meals, the same.
so to reduce the number of HA, he only eats one meal a day, then has 2-3 HA till bed time. but in the evening he's hungry. i thouhgt maybe a protein drink could curb the hunger, but not be "digestion" related.

when i had stomach surgery before and couldn't eat, my doctor had me do protein drinks, because they're liquid they don't require the same digestion as solids.

well differnent scenario....he seems to think it was the drink and he ate an orange and some crackers.

he said the work out wasn't very strenuous and that he felt good after that.

so i don't know....

he had HA's all nite and didn't sleep much at all. when the episode started it was worse than anything i've seen in 4 years of seeing his HA's

Title: Re: HELP! too many new things in one day!
Post by pierrejill on Apr 10^th, 2008, 4:23pm

I have found that my husband has a few food "triggers"... they don't cause an attack but they intensify them. His triggers this time include caffeine (although I know caffeine helps others), high fructose syrup (found in many drinks...maybe the protein drink?), tomatoes and MSG.

We started to keep a journal of his headaches and meals. If he had two bad days/nights we looked at his menu to see if there were any similarities and then avoid it.

My husband was on Topamax...it didn't cause a headache for him but he did get a psychotic reaction: thought he had bugs crawling under his skin and wanted to run naked outside in 6 feet of snow and freezing temperatures...so watch your husband closely!!

Good luck with the detective work...it is not easy!!!!

My advice would be to narrow down the variables... ask your husband not to work out tomorrow and avoid the protein drink. Mimic a meal(s) he has had a past time and you know how the day was. Then see what happens. If it is an "ok" day then add one other item...sounds like maybe adding working out since we need to keep their minds positive. Then add another variable, etc. That's what I do with my cat/dog patients...and my husband ;;D

Jill

Title: Re: HELP! too many new things in one day!
Post by MJ on Apr 10^th, 2008, 10:14pm

on 04/10/08 at 10:49:46, MinxKittten wrote:

it was the drink and he ate an orange

he said the work out wasn't very strenuous and that he felt good after that.

Exercise is a benefit for me.
However check topiramate and exercise possible side effects are big. The two dont allways play well together.

Title: Re: HELP! too many new things in one day!
Post by beachmusic on Apr 10^th, 2008, 10:23pm

Due to the lovely Topamax I actually feel to stupid to actually follow this thread but I do want to comment that topamax and exercise do NOT compliment one another.

I tried it more than once. First time tumbled off the weight machine.
Second time fell off the exercise ball. Third time decided a walk I best think over, carefully......

Title: Re: HELP! too many new things in one day!
Post by MinxKittten on Apr 11^th, 2008, 2:09am

on 04/10/08 at 22:23:04, beachmusic wrote:

wow, that is very interesting, we'll have to watch that, thanks for the info.

Title: Re: HELP! too many new things in one day!
Post by MinxKittten on Apr 11^th, 2008, 2:10am

on 04/10/08 at 22:14:13, MJ wrote:

Exercise is a benefit for me.
However check topiramate and exercise possible side effects are big. The two dont allways play well together.

what is topiramate???

Title: Re: HELP! too many new things in one day!
Post by RichardN on Apr 11^th, 2008, 2:34am

Hi and THANKS for being such a caring supporter

First . . . since you said the doc prescribed 7 lpm for 10 min . . . I will assume you have and 8 lpm regulator. You need at least a 15 lpm regulator . . . can be had on ebay for under $25 (if you're using the regular green topped 680 litre medical 02 "E" tanks.

Use the non-rebreather mask . . . that's the one with the bag . . . crank it up to 8 lpm if that's all you've got and use at the first sign of attack. He needs to let the bag fill, then inhale while squeezing the bag . . . when he's inhaled enough to flatten the bag, then exhale long enough for the bag to refill . . . then repeat. At 15 lpm the bag will fill in about 4.5 seconds . . . at 8 lpm it takes 14-15 seconds

8 lpm is not totally useless and helpful if used early-on in the attack . . . but not nearly as effective . . . not even close.

You still online? Got some more hints if you are.

Richard

Title: Re: HELP! too many new things in one day!
Post by MinxKittten on Apr 11^th, 2008, 7:04pm

thank you richard,
our regulator does go up to the 15 lpm, its the green one. i read him your post, that helps alot to know to fill the bag then inhale.

thanks for the good info.

jacq

Title: Re: HELP! too many new things in one day!
Post by DennisM1045 on Apr 12^th, 2008, 7:09pm

One other point I haven't seen mentioned on the rebreather mask...

Make sure that the holes on both sides of the mask either have butterfly valves in place or you cover them up with scotch tape, hot glue or whatever you have around.

It is real important that you breath 100% O2 and only 100% O2. No room air.

I agree with others that 10lpm isn't going to get it done. Get on e-bay and buy one if you have to. It's worth the price of admission.

Why isn't the Dr willing to go above 240mg on the verapamil? I struggle with side effects at dosages above 320mg but some folks don't find relief until they go much higher.

Like other said, you're doing a great job for him. Thank you! Supporters like you are heaven sent.

-Dennis-

Title: Re: HELP! too many new things in one day!
Post by MinxKittten on Apr 13^th, 2008, 12:13am

the doc was willing to go higher on the verpimil but my husband didn't want to.

he opted to add the topomax and the O2

the topomax is making him feel groggy and a bit "medicated" but hopefully that will pass or i fear he'll give it up.

but he did sleep better last couple of nites, minor or no episodes.

today he had 5 HA, but i was at work, so i don't know how severe.

yesterday when i was home, seemed like HA were less severe and shorter.

he tried the O2 a couple of times and it seemed to help. he also added the water thing and is trying to drink tons of water.

i'm hopeful he'll start to get some relief and hopefully break this nasty cycle soon.

thanks everyone for your help, let me know if you think of something else.

Title: Re: HELP! too many new things in one day!
Post by RichardN on Apr 13^th, 2008, 11:09am

Hey again jacq

"he tried the 02 a couple of times and it seemed to help" . . . . . he should be using it everytime, at the first sign of attack . . . it does take some practice, but still the first-line abortive for most of us.

Re the water therapy . . . which has worked for me . . . it's important to take a multivitimin and start using sea salt to replenish necessary minerals that can be flushed out with the "tons" of water. Also, as I have no experience with Topomax, you should check with his doc to make sure water therapy won't affect it's efficacy.

Verapamil was my first preventative . . . had my first PF day (in over a year) a few weeks after coming here when I had reached 240 mg per day (had three attacks that night . . . killed with 02). Got as high as 480, then settled on 360. My only side effects were the Verapamil "buzz", normally gone within 45 min, and some constipation . . . easily remedied with diet or stool softeners. Verapamil is still considered one of the preventative meds with the least side effects . . . but as dosage increases, definitely need to monitor BP. Many here use MUCH higher dosages and some in combination with other drugs (like Lithium).

If he's not using the 02 everytime . . . try this. When you see him starting to rub his temple on affected side . . . go get the tank, hand him the mask and crank open the valve . . . my wife also used to add . . "idiot!". . . (for having 02 and waiting till the attack started to ramp before using it).

Keep reading . . . keep asking . . . we'll get him there.

Be Safe, PFDANs

Richard

Title: Re: HELP! too many new things in one day!
Post by stevec on Apr 13^th, 2008, 11:59am

"the topomax is making him feel groggy and a bit "medicated" but hopefully that will pass or i fear he'll give it up.
but he did sleep better last couple of nites, minor or no episodes.
today he had 5 HA, but i was at work, so i don't know how severe.
yesterday when i was home, seemed like HA were less severe and shorter. "

I have taken topomax for my last two cluster episodes. It is a very interesting drug and somewhat unpleasant to take. Still, for me it very significantly decreased the frequency and severity of my cluster headaches. Be sure to go on it slowly and go off of it slowly. I suspect that you have been given directions to this effect.

There are some nasty side effects of topomax. Tingling in the hands and feet (paresthesias) can be really annoying and uncomfortable. Eating several Tums a day can sometimes decrease this side effect. It is something about replenishing calcium. Topomax also numbs up other nerve endings (making conjugal relationships difficult if not downright impossible). It can also slow down your thinking processes. The most notable effect is the inability to form sentences with a particular word. I would start a sentence and then have to stop while I was trying to figure out what word I had intended to say. I never thought that I was thinking unclearly, but this does really slow down your speaking ability.

Anyway, I suffer through these side effects in order to limit the headaches. Once the episode is over, it is a pleasure to stop the Topomax. Anyway, I just wanted to share my experiences with this medicine with you and your husband if this is the first time he has been on it. My experiences obviously may well differ from your husband's. Good luck and keep us informed!

Steve

Title: Re: HELP! too many new things in one day!
Post by MinxKittten on Apr 13^th, 2008, 12:15pm

hi richard,
yeah i did him some multi v's and magnesium and b-12 dots and fever few the other day, cuz in previous cycles these seemed to help.

i think he's discouraged with the topamax dopey feeling and i'm trying to suggest and push without being too pushy cuz most guys rebel against that.

i just keep feeding him the information and he has to do what he feels is right.