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21yrs+

21yrs+ hospital information & status update help

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Night one had a fair night.

He smiled & joked with me today for the first time in a month!

They have changed all his meds & taken away sleep apnea mask to help sleep. It was delivering 4 of oxygen.

He is asleep now & I again am waiting.......

No headache today but shadows often. Most of the staff look at me like I'm crazy when I say he's shadowing. He also has floaters & blurred vision.

2 MRI's today & the one with iodine went straight to his pupils & filled. Lucky someone understood this. No results till morning.

His heart rate & BP were all over the board. Heart rate was 40 than 60 back to 50 then around 80. They thought something was wrong with the monitor but it was durning an attack. (this was last night)

BP went from 138 top number down to 60 or 70 they said this was to low. Also last night.

New meds today include saline of course. Verapamil at 160 mg today. BP went back down to 90. Gabapentin 1200 mg but can take up to 1800 mg. An allergy over the counter pill.

Valproic acid 1000mg total with D5W at 50 ml total. both these meds were given yesterday & today.

When he got his ch last night he took Frova 2.5 mg as abortive with 4liters (think that's hw I write it) of O2. it aborted in 25 minutes & he feel back into a deep sleep. Usually if he does this he gets one again around 9 in the morning. Still nothing. 

Doc asked for the nasal drops & the hospital doesn't have them. I will be working on that one!

Plan for tonight? He's the new test patience so we will see what happens. Old papers say sumavel injection to abort so not sure on that drug. 

Now on the D3 regimen we tried it but no positive response. Tried the kudzu remedy no positive response. Tried the mushrooms you know the good ones but still not responsive. He said.the only thing that all the vitamins have done is turn his urine purple! Lol!! At least I accomplished something. Oh we got straight ginger from asia & it worked the best but still not one PF day.

You asked about quality of life? The last four weeks were dreadful. He feared every night & consistently got worse. I hate these things for him for you guys & all affected.

Thank you for the support & responses.

I will type more in the morning & let all know how night goes. If we get one night of rest I will be happy but i'm not quitting my research as I know they seem to always come back. 

the night is over and he had two ch's after bedtime both were around k4 he did oxygen and nothing else. First only lasted 30 minutes 1:05am. he had been asleep about 11/2 hrs. Second one still has it but managable this one started at 3:30 am new meds did not work. he is still in pain cranky and refuses to ask for anything.

he is also irritated that I tell the staff when they start and what is happening. he is hallucinating conversations that never happened. i understand this is part of CH but i thought it should be documented so they have all info. am i wrong cause it's really pissing him off?

waiting on test results hoping to know something soon. when the doc comes in i will send another message.

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21+, i know we're all so sorry to read of these ups and downs, and we know the terrible heartache.

i just have a couple of observations.  when you say you "tried" D3, kudzu, mushrooms, i just wonder what those trials were like.  please don't think i'm criticizing -- everyone here has tried lots of stuff.  if the D3 regimen was turning his urine purple, as opposed to yellow, i'd say something was wrong there.  and it, and the shrooms, can take some time (at least a few weeks on the D3; multiple doses of shrooms), and the shrooms will generally not work if they're being blocked by other meds he's taking.  so i'm just asking whether your trials of those things were sufficient to decide they wouldn't work. most of us here have found that the psychedelics do work under the right conditions, so i'd like it if you/he didn't give up on them.  sometimes if shrooms don't work, seeds do.

his crankiness and refusing to ask for anything is not surprising (and it ties in to my previous point). many, many people with CH tend to just give up at some point--they can't stand the cycles of hopefulness and pain, and their physical and psychological resilience is completely beaten down. often they suffer from a form of PTSD (post-traumatic stress disorder), like people who have been in a war.  it takes a lot to keep trying. i had to get past a huge amount of defeatism and crankiness from my daughter to get her to have a proper oxygen setup and try seeds.  i am saying again that it's highly likely that a proper treatment with a psychedelic, when it's not blocked by other meds, will work for him.  but you might have to help him keep trying.

i'm puzzled by what you're saying about the oxygen.  a 4-liter flow will not help him.  he needs at least 12-15 liters per minute, with a properly used non-rebreather mask.  this is essential.  many doctors will know that "oxygen" is important, but then won't provide it in an effective way.  if he's getting 4 lpm with some kind of crappy mask or cannula (the things that stick into your nose), that needs to be corrected.  he has to be able to inhale only pure oxygen, and inhale it deeply and consistently -- that can only be done with high flows and a properly used non-rebreather mask.  the first article that's linked to in the file i'm about to direct you to is from a major medical journal and says all that clearly, based on research.  if he's not getting 12-15lpm with a non-rebreather mask, you should show this article to his doctors.  you will also see in this file what i mean by a "properly used" non-rebreather mask: you have to plug up any valves that let in air from the room when he inhales: he has to be getting pure O2.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

i hope some of this is helpful.

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he is also irritated that I tell the staff when they start and what is happening. he is hallucinating conversations that never happened. i understand this is part of CH but i thought it should be documented so they have all info. am i wrong cause it's really pissing him off? 

It might be the medicine he's on doing it, but he should not be hallucinating. The doctors need to know about this ASAP if they don't!

Good luck, I hope they find something that helps.

Mystina

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Night one had a fair night.

He smiled & joked with me today for the first time in a month! 

Well glad things are looking up a little bit there so far.  :)

BP went from 138 top number down to 60 or 70 they said this was to low

Not too surprising I guess since verapamil lowers blood pressure.....

he took Frova 2.5 mg as abortive with 4liters (think that's hw I write it) of O2. it aborted in 25 minutes

Dang. 4 liters is half of what is normally prescribed, which is already WAY too low for so many of us.  :( I need 25 LPM . In high cycle 45 LPM (!!). Sounds to me like your hub could use a demand valve system for his O2. Folks who have those routinely report aborts within 5 minutes or so.

Tried the mushrooms you know the good ones but still not responsive.

Sorry if this is getting all persnickety and naggy, but did he detox from all meds (and from Kudzu, which can interfere with busting) for 5 days before the mushrooms?

[Edit: I now see that it took me so long to post this that CHfather and Mystina snuck in there and beat me to the punch. Good on them.  :)]

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He said.the only thing that all the vitamins have done is turn his urine purple!

he is hallucinating conversations that never happened

Not trying to scare you, but these seem like not typical reactions that could be serious.  I would mention this to the Doc rather soon.....

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sorry for the delay in sending a post.

we came home Friday from the hospital. we had two PF days and they were wonderful!!!  ;D

Sunday night though it came back.... he had 3 ch's first one was only to a 4kip then he took a sumatriptan shot and he was gone in 5 minutes.

bad decision!! you guys said something about rebound headaches it came back by 3:30am with it being around a 4 he did the little oxygen we had left only at 4 LPM and it was gone in an hour. next one hit at 7:30am bad one for 11/2hrs hitting a 7kip.

only good news is these were all down from a 10kip that he has been getting. he took Relpax around 6:00pm on Sunday night which is suppose to last 12hrs. i guess it did because the bad one wasn't till 7:30am.

he is on Verapamil er 120mg per day, Gabapentin 600 - 1200mg per day at bedtime, & Relpax 40mg as needed along with pseudoephedrine for ch. 

FYI.... just as you said MRI and EKG were both normal.

i got a hold of his Primary Care doc and they wrote the order for oxygen at 15LPM with a non re-breather mask.

thank you thank you thank you all for helping me with this!!!! i wouldn't have known what to ask for if it wasn't for this message board!!!!

to answer your questions.......

"tried" D3, kudzu, mushrooms, i just wonder what those trials were like.  please don't think I'm criticizing -- everyone here has tried lots of stuff.

1st let me start by saying it's really hard to offend me I'm typical type A personality. also i would never think you guys were asking questions that weren't important to the care of someone with ch. i am amazed with some of the responses and very grateful.  :)

next on the - D3 regimen no we didn't do it right i actually mixed it with kudzu thinking if he took all the vitamins maybe together it would work. also we did not do the lemonade like it states.

kudzu - I'm pretty sure we did this right but all the info was from 2005 and I'm sure you guys know newer remedies because i couldn't find any new info on kudzu.

mushrooms - he only had .5 grams and said it was old. he got desperate and tried before the detox of Sumatriptans. he says he knows he did this wrong.

we told his doc everything even the hallucinations. doc said it was like dreaming vividly and he was fine.

doc said he has had one other person ask about LSD. my hubby is not willing to do this until next cycle because he says right now he is in too much pain to do the detox.

doc also believes he needs a sleep study that they will conduct after the cycle. he said he wouldn't get a good reading during cycle because hubby wouldn't rest. i am curious it it would show how the brain waves work during the actual ch. any thoughts to this and has anyone else had a sleep study?

then last night in reading emails we were told the Gabapentin could cause memory loss or problems that you will never get back. then it said weight gain and he was pissed!

he also just quit smoking and has been worried about gaining weight. i know this is a small piece but it added to his frustration.

his biggest concern is the memory loss. he has a job where memory loss it just not an option. he was so disgusted he was angry frustrated and saying he was pissed the doc did not tell him this and planning a trip to his office to say what the f***!

shed some light on long term effects please?

now he is episodic and yesterday was exactly 5 weeks. his typical cycle is 4 to 6 weeks.

he's now down and depressed again and pissed that he has something that only affects .01% of the population.

Personally i think you all should be buying lottery tickets since you are not the norm and maybe this could increase your odds on winning! jeez something good needs to happen from all of this!!!!!

again thank you to everyone that read the thread and for helping us try to figure this out! 

i know my husbands condition isn't as bad as a lot on here but i am so grateful for you guys help. i hope sharing this info will help others too.

i have been talking with specialist, nurses, dentist, docs of different kinds and looking for as much info as i can. i will continue to do this for him and for this message board and will post when i know more.

please let me know on questions.

on another note just to give you a little personal background......

we both work full time have kids and very busy lives. we are fairly young (although recently i feel 10 years older because of this) but maintain very active social and physical lives. we don't want this to interfere with our daily routine but of course it has!

there are things we can't change but I'll be damned if i let anything get the best part of us!!!!

thanks guys!!!

 

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Hi 21 yrs+,

I can just relate my anecdotal one person's experience with gabapentin and tell you that twice I was on high doses for a few months and I wasn't aware of any memory loss risk and didn't experience any extra memory loss. Or have I just forgotten?  :D

Seriously, I have a pretty bad memory dating back to before any gabapentin use, but as I just recently mentioned in a thread here about lithium orotate, the supplement phosphatidyl serine has helped me dramatically enough to restore me back to normal memory when I'm on it. I don't mean to be pushing this stuff - just because it works for me doesn't mean it'll work for anyone else here, but if anyone tries it, keep in mind it'll take a week or two for it to fully kick in.

Then there's this new supplement magnesium threonate for brain function that I'm going to be looking into...

So I think gabapentin is maybe one drug I tolerate better than the average bear. I didn't mind the feeling of it so much, and it cut my CH attack frequency in about half. Yep it makes ya unusually HUNGRY while you're on it, but that goes away of course after tapering off.

PS - there may be less rebound risk if you use 1/3 to 1/2 imitrex dose as outlined in the imitrex tip:

http://www.clusterheadaches.com/imitrex.html

And YAY for the new O2 prescription! That 15 LPM very well may work. If it doesn't keep in mind that a higher LPM very likely will.

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I don't know if this will make you feel any better, but what you and your hubby are going through is pretty typical of a CH patient.

Numerous hospitalizations, medications, side effects and occasional relief that gives them hope, only to find out that it was temporary but unsuccessful in treating their CH.

We all know his frustration and fear of detox.  My 19 year old son has been chronic for the last 7 years, and we struggled with that fear for a long time.  Now that he looks back on it, he wishes he had done it sooner.  Before busting, he was rebounding bad from Toradol injections that had him up to 10 - 14 headaches per day.  And I won't lie, the detox was tough, but not that much tougher than living with the rebounds.  And not only did the detox pave the way for busting, it almost immediately (following the first 48 hours or so) lessened the CH hits.  To this day he is still not PF, but so much better.  Not to mention how he felt with all that crap in his body from conventional meds.  He once said that he really had no idea how he really felt until after the detox.

If we had it to do all over again, knowing what we do now.  I would've only seen a headache doctor for diagnosis and oxygen.  So much needless suffering.  And the sad thing is there just isn't really anything they can give to treat CH.  It is just a guessing game since there is no drug made to treat CH specifically (yet).   

I hope he reconsiders.  What I would fear is the induction of all these new meds actually making him worse instead of better.  It is harder to undo later.

You are a good wife for supporting him like you do.  Many have turned their backs on suffering spouses.  You are out there getting info and helping him in so many ways, you don't even know. 

Regardless of what he decides, he has a cheering section out here! 

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My memory problems weren't any worse, or any better on Neurontin.

Some people have problems on it, others don't. I'd tell your hubby to wait and see. If he starts having problems, THEN he can worry about it, and be mad about it.

I didn't gain weight on it until I started having bad reactions to it, and then? It was water weight. So really, my advice is just check and see...

On the .5g of shrooms, that might not have been enough to bust him, is all.

There are some things that you DON'T have to detox from... But maybe once he has the 15LPM oxygen, he'll need less Imitrex and can try detoxing from it. I hope so. I think most people will suggest that you order the oxygen mask made for Clusterheads, specifically. I'm sure someone has a link to it. :)

Good luck!

Mystina

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not much to add here to those beautiful messages from jeebs, mystina, and clustermom.

thank you for checking back in.  i was wondering about you and your hubby, and i'm sure others were, too.

gabapentin/neurontin, as mystina said, makes some people feel kind of dopey and/or uncoordinated. one thing about "memory loss" is that once you're told you're going to have it, then all the normal minor moments in the day when your forget something can come to feel like "i'm losing my memory!"  the effectiveness of neurontin for CH also varies quite a bit.  so he'll have to try to feel his way through this and try not to overreact. i doubt that long-term memory loss is a serious danger.

that's a big bunch of meds he's on.  partial as i am to the D3 regimen, i don't think i'd add that into the mix, though it is just vitamins at generally "normal" dosages, so you could consider it.

some studies have correlated sleep apnea with CH, so a sleep study isn't a bad idea.  won't learn anything about brain waves and CH, though, especially if he's out of cycle.

so glad you're getting the O2.  i'd strongly recommend that you have the O2 supplier set up the equipment and show him how to use it.  it's simple, but a lot of mistakes are made, glitches that just add to the frustrations of CH when you least want them. (actually, i'd call the supplier ahead of time and make sure they're bringing the right stuff--sometimes they don't; many suppliers are not really familiar with CH. and you want at least two large tanks ("m" tanks) and at least one smaller, more portable tank (an "e" tank) that he can bring to work, have in the car, etc.  since the regulators are different for m tanks and e tanks, it'd be nice if the supplier would give you one of each kind of regulator. (what they'll give you depends in part on how the prescription is written.))  the mask that mystina mentions is called the O2ptimask; you'll find info about ordering it in section 11 of this file: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

be sure to note in that file the correct way to set up the mask -- cut off the strap at the back (so he doesn't fall asleep with the mask on) and cover up any holes in the side of the mask that do not have a valve in them. you can cover that hole (there should only be one, if there are any) with a thumb while breathing in and then let the thumb off while breathing out, or tape up the hole altogether.  point is to be breathing in only the air from the tank and not having it become mixed with room air.

you'll also see some mention in that file of the "demand valve" system that most people say is great, though a bit costly (around $350 retail).  depending on your finances, that might be worth considering, though if his cycle's about to end, maybe you'd want to wait.

finally, i'd be remiss, given your description of yourselves as a couple, if i didn't mention one other study of something that helps for CH, which you can find here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077391/?tool=pmcentrez

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After hearing all this, the last place I want to be is in this hospital. We can treat ourselves better than these doctors can apparently.

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I was on Gabapentin for more than 2 years when I was dealing with seizures.  I'm one of the few that did not seem to get any negative effects from it (not many positive ones either ;))

As far as memory goes though, the seizures that I had really screwed my memory up--like BIG time.  Could hardly remember anything. Then I gave up on Western Medicine (again) and went for the shrooms to treat my headaches.  I can not stress enough how helpful they were for me and my memory.  They helped my headache more than any other med, but more importantly it felt like they gave me my life back.  The one I had forgotten about.  The first few times I busted all I could do was lie in the dark, I was overwhelmed by memory--at times it was so vivid I felt like I was reliving experiences.  It brought me to tears quite a few times, having the life I had lived that seemed just "gone" to be flooding back to me.  Highly recommended.

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If you can get the O2 up and working... it's amazing at aborting the pain, and he should loose all fear of detoxing. Yes, it works that well for most of us!

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