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Title: So I went to the MHNI yesterday Post by 3-foot on Apr 5th, 2007, 1:39pm The Michigan Head Pain and Nueurological Institute. I ended up spending 6 hours there. They were very through. In the end they agreed with me that I had a classic case of cluster headache. Although I don't fit the profile of a smoker, child of a smoker, or former head trauma patient. I guess 99% if CH'ers fit into one of those 3 catagories. HUH. Anyway in the end I got a shot of 9mg of Litocaine and 1 mg of Kenalog(steroid) right into the base of my skull. I assume it was probably directly into the nerve. This is supposed to stop the episode I am 3 weeks into. I went home with a prescription for oxygen & Imitrex injections for abortives and if necessary Verapamil as a preventive. Also a recommendation to take Melatonin in 9mg doses also as a preventive. The injection was supposed to be effective within 24 hours. I was pain free all night until 6 am this morning. I got what seemed like a minor hit, that was escalating more slowly than normal. Still it was getting bad, I was still well inside the 24 hour mark. Since I haven't filled the O2 yet I decided to try the Imitrex, my only option. I hadn't read the directions yet (my bad) but it seemed straight forward. Still trying to read during a hit is difficult, thanks to the photos, I managed to get it going but I didn't hold it down long enough and lost probably half the dose dribbling down my leg. Still 30 seconds after the injection, BAM! I felt it coming up my back like a warm tingling wave, straight up my spine and the back of my head. Then the cold sweat hit, for about 3 minutes I thought I was going to pass out or die. I guess I got enough in there after all. 5 minutes later it was gone! I clearly was not prepared for the sensation that the Imitrex gave me but the end result was great. I ordered the O2 today. This is really the direction I want to head with the abortive. I don't like putting drugs in my body, but I had to make a choice between that or pain, I'm sure you all can relate. It was nice to go to a doctor who actually knew what he was dealing with and had real experience fighting it with great sucess. I guess I count myself lucky that it's only an hour drive for me. I can now relate to these Blind melon lyrics.... "Needle, fetal Someone's pouring warm gravy all over me And you see that synthetic therapy Don't you know it seems to be so unappealing But, oh what a feeling" Ok, I know he had a drug problem, that killed him, but the song stuck in my head today. The feeling was similar but not the same, I imagine. Since this morning I'm pain free and hoping it stays that way as I'm past the 24 hour mark now. (finger crossed) |
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Title: Re: So I went to the MHNI yesterday Post by BrianJ on Apr 5th, 2007, 1:57pm all sounds like good news and you getting the help you need all i can say is it feels good when that first shot of imagran (imetrex) takes that HA away dont it i find a little sleep after the HA has gone makes ya feel great |
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Title: Re: So I went to the MHNI yesterday Post by seasonalboomer on Apr 5th, 2007, 1:58pm Welcome to you 3-foot! Sorry you had to find us but glad you found a place. Sounds like they've got you pretty well set. Important point on the O2 -- you must have a regulator that allows you a flow rate of 10-15 liters per minute. If the O2 company tries to leave one that only goes to 8 lpm -- stop them and have them give you what you need. Also, very important, you need to have NON-rebreather mask -- these have a bag on the bottom and don't allow outside air to intermingle. And if they try to give you nosa cannula's tell them to give you what you need. As for the Imitrex. I'm averse to using drugs too - but damn, that stuff really works doesn't it? I've gotten over my drug aversion when in cycle, and if the O2 doesn't work (which it doesn't occasionally) -- I'm sticking myself with an Imitrex and going on with my life and quickly forgetting clean living for a little while. ;) Good luck. Scott |
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Title: Re: So I went to the MHNI yesterday Post by Kevin_M on Apr 5th, 2007, 1:58pm My first time with Imitrex was a flushed sensation but thereafter that was not a factor much. There is a good Imitrex tip over to the left side for using much less with good results, too. Quote:
Not so familiar with that. Quote:
I find the verap necessary myself, better than aborting random hits three times a night, at work, etc., etc. Good luck! |
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Title: Re: So I went to the MHNI yesterday Post by chrisw on Apr 5th, 2007, 3:38pm try the verapimil, it is a wonder drug for many with few side effects. Its always better to prevent hits, than treat them. Also, you should really look at the imitrex tip on the side, most of the bad initial side effects do not occur when using this method. The only thing is, you may need to get your dose ready during a pain free time, because trying to pull off the label, and pry it out of the case is very hard to do during a bad hit. Good Luck with your treatment and hopefully you can find a great preventative for you. If not, there are sooo many great people here, that you can get support from. ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D chrisw |
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Title: Re: So I went to the MHNI yesterday Post by E-Double on Apr 5th, 2007, 4:33pm Glad you received approipriate care!!!!! MHNI is top notch. Get that O2 ASAP!!!! Another Blind Melaon Fan...check out my tag! Feel good and good luck! Eric |
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Title: Re: So I went to the MHNI yesterday Post by Guiseppi on Apr 5th, 2007, 5:08pm I describe the imitrex more as the "snakes up my back" feeling! It's wild how fast it aborts though. Great advice above on the oxygen. People have used it incorrectly, nose cannulas, rebreather masks, low flow rates, and assumed it wouldn't work for them because it didn't abort their headache. The only two tricks are starting it as soon as you get the "oh sh$@ here it comes" feeling, and making sure you breathe 100% oxygen. Will abort the vast majority in 6 minutes or less for me! Hope it does as well for you, and welocme to the nut house! Guiseppi |
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Title: Re: So I went to the MHNI yesterday Post by 3-foot on Apr 6th, 2007, 7:48am Thanks for the welcome guys(and gals), My O2 is coming today between 12-3. It seems they didn't have a regulator that flowed 10-15 in stock. Its written righ on the script: non-rebreather, 10-15 lpm full mask. They really cover all the bases at MHNI. I had another hit last night at about 7:30, my usual time. It seemed a bit slow to start and didn't peak all that high. Maybe that block helped, although it didn't "block" exactly. Relaxing seems to be my trigger, can I get some stress over here please? ::) Anyway I injected the Imitrex in my /(forest gump voice)"buttocks"/fgv this time and it was much better. Last time it was my leg and must not have enough fat in it, thus causing it to hit my blood stream too fast. That's my theory anyway. Much better this time and with a full dose too. I read the imitrex tip but, yikes, I really hate needles. It's all I can do to hold that thing against my ass for 5 seconds. :) I'll be Shopping for melatonin at the health food store today. I notice that I've been dreaming a lot the last two nights. Is that a side effect of the drugs or am I just sleeping better now? Hmm... I hear the melatonin makes it even better. Nice, dreaming has always been interesting to me. If I can just learn to take control of my dreams.... So many Melon lyrics that seem to fit, it makes me wonder about that guy. How about this... And now I'll close my eyes really, really tight And make you all go away, I'll make you all go all go away...... And I'll pull the trigger and make it all go away And I'll make it all go away, I'll make it all go away ......that guy had problems. |
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Title: Re: So I went to the MHNI yesterday Post by pieface_49 on Apr 6th, 2007, 11:09am Hello 3-foot, Your discussion of dreams hits with me. Normally, I do not have dreams or just don't remember them. Very seldom, only when under high stress do I remember dreams. Nightmares have been with me since childhood. Usually occurring during times of stress. During my last cycle, dreams were very prevalent and stuck in my mind after awakening. Highly unusual for me. http://jrscience.wcp.muohio.edu/nsfall01/FinalArticles/FinalDraft.FactorsThatInf.html |
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Title: Re: So I went to the MHNI yesterday Post by Guiseppi on Apr 6th, 2007, 11:17am Out of cycle I'm lucky if I remember what I was dreaming as soon as I wake up. In cycle I remember multiple dreams with very vivid details. I don't know if it's CH related or med related. Guiseppi |
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Title: Re: So I went to the MHNI yesterday Post by 3-foot on Apr 7th, 2007, 8:27am I'll have to mention the dreaming at my follow up next week, sounds like a common thing. I keep dreaming about people from high school, I hate that. I'm gonna keep rambling on in hopes that someone might learn something from my steps and mis-steps. The O2 was effective for me 2x yesterday at 8pm and 10 pm I was getting little twinges and hit the O2 right away. It worked! Why does is smell so bad? kinda sweet. The mask is missing one of the shut off disks, so I had to tape over the hole and now it exhales through one side and the bag, but it's air tight. All hail the power of duct tape! Then at 12:18am I awoke to one already in progress. I tried the O2 a third time, after 15 min, it knocked it down maybe from a 7 to a 6, but it was too late to stop the train. An Imitrex injection finished the job in about 5 minutes. Then back to sleep, no more issues. So I reduced my injections by half, yesterday with oxygen. I'm starting the Melatonin today, but I was told it will take several days to really have an effect. So I may have a few more injections in my future. They gave me 10 doses so it shouldn't be a problem, except that I feel like I'm poisoning myself every time I push that button. Still it is better than the alternative. Also saw the Chiropractor yesterday; he thinks he may be able to help as well. It can't hurt to try, every avenue. It has been 4 weeks today since the cycle started. My episodes usually have lasted 6 to 8 weeks, so, with luck, I'm on the down side of the hill now. Oh, one more thing... Have you noticed your sense of smell has gotten better, than it was? Mine is very accute this week, and that is not normal for me. I wonder if this is related somehow. Hmm... |
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Title: Re: So I went to the MHNI yesterday Post by Rockcoat on Apr 7th, 2007, 8:57am Back when I was first diagnosed (1985) my neuro prescribed a drug that he warned me may cause vivid nightmares. I think it was either Inderal or Ergostat? (Perhaps an early version of Cafergot?) I wish I could remember because they indeed caused incredibly vivid nightmares for me,almost considered night terrors. Whoever said we dream in black and white never took this stuff cause there was alot of red in those dreams.I stopped taking that stuff and they went away immediately. |
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Title: Re: So I went to the MHNI yesterday Post by pieface_49 on Apr 7th, 2007, 3:52pm If you think you are dreaming now :) "The most common side effect of melatonin is drowsiness or difficulty awakening. Many people also report more vivid dreams; studies have shown that melatonin does not increase the amount of time spent sleeping, but it does increase dream recall." http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Melatonin There is something interesting in the above link. "Stimulants Can Lower Melatonin Production * Avoid Caffeine in the late afternoon and evening * Beware of pseudoephedrine and other OTC stimulants" Read the information on the B category, including B3 and B12. http://www.justfoodforhealth.com/html/vitamins.html |
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Title: Re: So I went to the MHNI yesterday Post by UN solved on Apr 7th, 2007, 7:21pm MHNI is a good place to go for headache sufferers. Their inpatient facility in Chelsea is a beautiful place ( but I didn't like not having a private room ) Just wonderin' .... Is Dr. Todd Rozen still there ?? He's a GREAT doc !! Dr. Saper is a GREAT doc too !! Both docs are 'down to earth' ... I really liked them both. Goodluck w/ the 'headaches' !! UNsolved |
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Title: Re: So I went to the MHNI yesterday Post by chrisw on Apr 9th, 2007, 9:03am I think the dreaming aspect of it is that CH seem to occur during REM sleep, and this is when dreaming occurs. Since we are waking up with pain during REM, we seem to remember our dreams a lot better. Youre not having more dreams, you are just remembering them. Good luck. chrisw |
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Title: Re: So I went to the MHNI yesterday Post by George_J on Apr 9th, 2007, 9:13am on 04/09/07 at 09:03:19, chrisw wrote:
I believe that's a "bingo", Chris. I tend to wake up briefly during REM sleep even out of cycle. I'm pretty sure this is simple gun-shyness, and not something physiological. "Does it hurt?" "Nope." "Okay, go back to sleep." I hate this stuff. Sleeping during a cycle is like playing Russian roulette. :P Best, George |
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Title: Re: So I went to the MHNI yesterday Post by 3-foot on Apr 9th, 2007, 12:06pm on 04/07/07 at 19:21:21, UN solved wrote:
Yes, actually I was assigned to Dr. Rozen. It's probably too early for me to be singing his praises but I did sleep through the night last night, well mostly. I shouldn't have said I am dreaming more, but that I am remembering more of my dreams. I have read that everyone has 6-8 dreams in a normal night sleep, but most don't remember them. This last week or so I have been remembering many of them. The melatonin hasn't increased it anymore than it was but I just started it two nights ago, so we'll see as time goes on. The O2 is really working for me I haven't used anything else for 3 days now. The frequency and pain level has dropped off. Breathing it through my nose seems to make it work faster than through my mouth. It's difficult at first but then my sinus cavity on that side opens up and it gets easier. I maybe overusing the O2 a bit, I went from 2000psi to 1500 in 4 days. I'm quick to take a hit when I first feel it coming, but I haven't suffered a full on attack because of it. Each time I was able to completely abort within 15 minutes. Today I'm at work and the tank is home, too big to transport, so hopefully I can mantain for 8 hours. I need to get a portable, but if I keep going the way I am the episode may be over in another week. I hope. I aborted my last attack this morning, I knew I shouldn't have rolled over and gone back to sleep, but it was only 4:45 am and I didn't need to be up till 7 today. My normal wake up is 5-5:30am. As it turned out I was back up at 5:15 sucking oxygen, 8 minutes was all it took, then back to bed again till 7. Since then, I am feeling good, now with only 4 more hours to go till I'm on my way home again. I have the Imitrex in my back pocket incase I don't make it. Looks like I won't need to fill that Vapramil script. |
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Title: Re: So I went to the MHNI yesterday Post by Judge_Smails on Apr 9th, 2007, 3:33pm 3-foot, glad to hear the O2 is working well for you. I wouldn't rule out the Verapamil just yet though. This is the first cycle I've tried it and it's been fantastic - I have gotten a single hit (knock on wood). I know you mentioned that your mid cycle and are going to try to ride it out, but I can't recommend enough giving the Verapamil a try for your next cycle. O2 and Trex work wonders, but you should try a preventative so you don't have to stress about always having the abortives. |
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Title: Re: So I went to the MHNI yesterday Post by 3-foot on Apr 10th, 2007, 11:54am I wouldn't rule it out next time, but I'm trying to avoid drugs at all cost. I don't even want the Imitrex, really. Melatonin and O2 are ok with me and seem to be working . 30 hours and no attacks. ;;D |
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Title: Re: So I went to the MHNI yesterday Post by E-Double on Apr 10th, 2007, 12:18pm I went through 18 cycles without meds. I then was diagnosed and put on meds. After 2yrs on meds (turned chronic) I decided to detox due to having enough of the side effects with limited help. I detoxed and have been med free with exception to a few times using an abortive for over a yr. I am still chronic though the hits seem less frequent and certainly shorter in duratioin than they were. I use my oxygen and I am happy dealing with mini cycles of high and low activity. It is my personal choice and I only advocate for one to find their own way towards physical and mental relief. Good luck and may it be an easy ride. Blind Melaon Fan. E |
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Title: Re: So I went to the MHNI yesterday Post by 3-foot on Apr 12th, 2007, 2:58pm It's been a couple days, here's my update. I thought it was getting better, but I was wrong. At least it's getting more predictable now, joy..... 04/10/07 Tuesday Pain free all day. Went to sleep at 9:15 pm and woke at 11:15pm to one just starting (41 hours pain free). It was mild at first and I hesitated to get up to use the O2. When I finally decided it was for real it was almost too late. It took a full 15 minutes to knock it down. Somehow I knew it would be back again before morning. 4/11/07 Wednesday I reawakened at 3 am this time it was in full progress. Severe head and neck pain, eyes dry, hot and sweating from head to toe, elevated heart rate, closed up left sinus cavity. I went back to the O2 tank for another 15minutes, no relief this time. I injected with imitrex and it took a good 10 minutes to work, the pain was severe this time, sobbing in pain, couldn’t sit still. Then after 10 minutes, it switched off from full on attack to pain free in about 5 seconds. The imitrex caused a cold sweat again this time. This morning I woke at 7 am tired and with a shadow of pain that feels like I’m bruised. It woke me up 2 hours after falling asleep, again. Left eye completely dry, dry throat, elevated heart rate, closed left sinus cavity, temple swollen and hard, but no sweating this time. It was 11:15pm and it was minor head pain by comparison to what was coming later. I learned from last time, got up and hit the O2 immediately. It stopped within 12 minutes. Back to sleep. 4/12/07 Thursday I reawakened at 3am, again, with the same symptoms as earlier. This time a bit stronger but still aborted after 15 minutes of O2. Then, back to sleep. 6:35 am woke to a pounding headache, much stronger this time. 15 minutes of O2 kept it from getting worse but didn’t abort. I stopped the flow at 15 minutes and went immediately to the imitrex. I hesitated injecting as the headache seemed to be slowing a bit, but then it surged again so I injected. For 10 minutes I was in agony. The pain quickly surged to a 9+ leaving me sobbing uncontrollably from the pain. No sweats from the injection this time. I scared Kona(the dog) and Abby(my wife) both. She is usually asleep during my worst attacks, but today she got to witness first hand the worst of it. I still don't think she really understands the experience, lucky for her. 10 minutes later and it was magically gone, a repeat of the day before but worse this time. Today I’m tired but no pain is present. Still there is a shadow lurking below the surface that pings me every now and then. My eyes are sensitive to quick movements. I’m going to get the Verapramil filled today, it’s time to step it up. :( >:( |
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Title: Re: So I went to the MHNI yesterday Post by brian trudeau on Apr 13th, 2007, 5:32am Anyone ever hear if Shannon Hoon had suffered from Cluster headaches? |
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Title: Re: So I went to the MHNI yesterday Post by Skyhawk5 on Apr 13th, 2007, 3:06pm Three-foot, we're almost neighbors, I'm in Ypsilanti near Willow Run Airport. I've been in peak cycle for about 6 weeks now and hope for remission soon. We will get there soon. Mine seem to wind down over time. I use O2, Verapamil , Lithium, Frova, and Trazadone for sleep. Also use Stadol NS on K-8-10's that stops me from vomiting. A narcotic but I've tried most all other options and my Nuero, Dr. Gerald Riess @ Greater Ann Arbor Nuerology, keeps a good eye on me for those who worry. I'm not much for posting right now but it will get better. Hey I heard that when you go to MHNI, if you're a smoker you have to quit or not be treated? Good Luck & God Bless, Skyhawk5 (Don) PS, I spent 6 days @ Chelsea Pain Unit in 1992 (Dr Saper) |
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Title: Re: So I went to the MHNI yesterday Post by starlight on Apr 14th, 2007, 3:28pm I didn't know that about the 3 categories that cluster headache people ususally fit into one of them. I have heard Michigan Clinic very good also. |
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Title: Re: So I went to the MHNI yesterday Post by UN solved on Apr 14th, 2007, 5:03pm MHNI never demanded that I quit smoking. ( of course all docs suggest it ) The only time I couldn't smoke was when I was a patient @ Chelsea hospital ( MHNI inpatient unit ) UNsolved |
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Title: Re: So I went to the MHNI yesterday Post by Skyhawk5 on Apr 14th, 2007, 5:49pm Un-solved, Thanks for the info. When I was @ Chelsea for the DHE IV's in 1992 it was non-smoking but I didn't get caught on the walking trails. I've always kept Chelsea in my back pocket but as you know this trip has it's own stresses to bare. 3-Foot, PF vibes your way, Skyhawk5 |
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Title: Re: So I went to the MHNI yesterday Post by Rosybabe on Apr 14th, 2007, 6:10pm My cycle always have a peak and then things start getting beter, hope yours goes that way and that hit you had was your peak. PF wishes for you!!! |
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Title: Re: So I went to the MHNI yesterday Post by UN solved on Apr 14th, 2007, 8:19pm on 04/14/07 at 17:49:19, Skyhawk5 wrote:
I can tell you've been there. There are a few trails. I had me a lil smokin spot down one of those trails too !! I almost always see deer walking around while I'm there too. Last time I saw 2 deers walk by and I was inside the surgical center. I also walked up to about 5 of them ( 4 layin down chillin' and 1 standing up looking at me ) one day. I even took pics. There's also a ' Bed & Breakfast' on the property ( with trails) and another fully furnished ( 3 bedroom, I think)cabin that patients and thier familiys could stay in It really is a hospital in the middle of a park UNsolved |
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Title: Re: So I went to the MHNI yesterday Post by Skyhawk5 on Apr 14th, 2007, 8:37pm UNsolved, Couldn't ask for a more serene setting. I saw deer too even in the parking lot one morning. I have standing orders from my Nuero to go there when I can't take it. 30 min. from my house give or take. The DHE works great but I got hit the night I got home. The Beast. 3-foot, Not trying to highjack your thread here, hope your OK. I'm having a good day today and am being a little chatty. PFDN's, Skyhawk |
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Title: Re: So I went to the MHNI yesterday Post by kshodges on Apr 15th, 2007, 12:21am 3-foot, Thank you for posting such details! You have my attention, so I am anxious to see how things go for you. I am in a similar boat, but I am chronic. I have the Imitrex injections (get the same side effects you mentioned), Oxygen and Verapamil. I even laughed that you have dreamed about high school. I do/did too! My husband can vouch for that. :) I have been hesitant to start the verapamil (hoping the other two would work), not to mention I just cringe at the thought of long term meds...but finally realized, I need to give the preventative a try, for me AND my family. They suffer too when mom is "out of order"! I have been chronic for, uh, 15 years, now. So I have surrendered. I started 80 mg 2x a day on Wednesday, so I am just waiting for now. We started really low and will slowly increase over time, so I probably won't know for a while - especially since my cluster cycle is nearing the end. But, ha ha, it's back in just a couple of short weeks. I had a question for you, too - Do you use the mask the medical supply place gave you, or a clustermask? I ordered a clustermask last week - should get it some time this week. I did not have consistent success in the past with 02, but Gator and Cluster Chuck insist that I try it again (this time with the right flow regulator and mask). So, we'll see. I look forward to your posts and hope you find something that works for you! Kelley |
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Title: Re: So I went to the MHNI yesterday Post by 3-foot on Apr 16th, 2007, 7:02am Thanks Kelley, glad it's helping you. I was wondering if people were tired of hearing me rant yet. Sorry it's been a couple of days again. I have been enjoying the weekend. Yeah that's right. I started the Verapramil on Thursday and it has been working, here let me just do this..... 4/13/07 Friday I woke at 12am with the same headache that I've had for the past several nights now. O2 was no help again, as the pain is too advanced by the time it wakes me up from my sleep. The imitrex worked within 10 minutes. The pain was in the 8-9 range, slightly less than before, with no sobbing this time. Friday morning I woke up with a minor shadow. My left sinus seems to be plugged up, like I have a cold but no drainage. MRI was at 10am by 12 I was done, but the dye seemed to make the headache worse, more in the 4-5 range. This persisted for the entire afternoon. 4pm I went to the chiropractor, the heat pad he uses on my neck seemed to help the pain and the adjustment didn't hurt either. I came home, used some O2 and a heat pad on the entire side of my head. This did the trick and I fell asleep, pain free at about 7:30 for about an hour. I got up at 8:30 with minor, 2-3 range pain, steady again but not getting worse. It was the best hour of sleep I've had in a week. I used more heat and went back to sleep. By 11pm I woke up with a real headache this time in the 8 range. I hit the O2 and it seemed to knock it down a notch or two but after 15 minutes the pain was still there around a 6. I decided to give it more time to work and reset the timer for another 15 minutes. I massaged the area, it was painful at first but I persisted with an open palm pushing from back to front. This method had proven successful in the past for smaller hits. After 10 additional minutes it was gone. with a total of 25 minutes of O2 and massage, and I avoided the imitrex. 04-14-07 Saturday I woke at 7 am with just a shadow of pain in the 1 range. Overall a good nights sleep, I feel more rested than I have all week. I'm still a bit on the tired side but not too bad. The left sinus is still a bit plugged and will drain to the right if I lay on my right side but then comes back to the left side. I was pain free all day. I went to sleep at 11pm and got a full nights sleep with no pain. 4-15-07 Sunday Woke at 6:30 am feeling rested. YES! I fell back asleep and woke again at 9 am with a slight headache, very minor. I used O2 for 8 minutes, it was gone and hasn't returned all day. The sinus thing seems to have cleared up. The verapramil seems to be working well, today is my first full dose day (3 pills). 04-16-07 Monday Woke up at 5:30am with a full nights sleep again. I had to go to work early as my MHNI follow up appointment is today at 3:30 and it's an hours drive. I feel like myself today, nice! .......I think it may be coming to an end, finally. Yeah I know I said that before. Still it's nice to have a good weekend PF. Mmy wife is much happier now too, I feel bad for her, all this is putting her life on hold just like it does mine. I should have started the Verapramil sooner. |
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Title: Re: So I went to the MHNI yesterday Post by ClusterChuck on Apr 16th, 2007, 7:10am GREAT NEWS!! SO glad you are getting some relief! I am not sure if your insurance company restricts the quantity on imitrex, that you can get each month, or not. BUT, if they do (the ba$tards!!) keep getting your 'trex refils, as often as you can, even when painfree, so that you build up a supply. Chuck |
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Title: Re: So I went to the MHNI yesterday Post by 3-foot on Apr 19th, 2007, 12:31pm Look at me I'm pain free! No attacks since Friday, tomorrow it will be a week. :) :) :) I stopped the melatonin last night and today my energy level is back to normal. I am remembering dreams more than normal. Dreaming about my days running a Taco Bell are better left forgotten, yet they persist. It's worse than the high school dreams. ::) I did have a minor headache yesterday, more like a regular hangover except no drinking. That's just not right. From that I know the cycle isn't over yet, but the Verapramil is doing a stellar job. I think yesterday was more weather related then anything...when is the warm weather coming anyway??? Today I'm feeling 100% This site has been a wealth of information for me, thanks to all of you. No worries, I will still be lurking around the site even when my cycle does end. I'm not sure that I can really add much to what is already here but I'm sticking around anyway. My prelim. MRI results were normal and my blood work was A-ok. I guess I get Ch for all the "normal" reasons. I just wish someone could figure out what that is exactly and fix it. Is that so much to ask? A couple of things I missed... skyhawk 5- My mom lives over by willow run. Michigan ave. and Denton. My sister isn't too far from there either. I'm out in North Oakland Co. Small world, eh? You gotta stop smoking! Kelley- I've been using the supplied mask. It's a non-rebreather but it was missing one of the shut-off disks so I taped over the hole on one side to keep the outside air out. It works well. How's the Verap. working for you now? Clusterchuck- I've got a pretty good supply of Imitrex still. My BCBS covered all the meds, but the bill from MHNI was pretty hefty, ouch. It didn't hurt as much as all the headaches I missed out on by going, so it was a net gain in my book. |
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Title: Re: So I went to the MHNI yesterday Post by Skyhawk5 on Apr 19th, 2007, 1:04pm 3-foot, Glad to hear your getting some PF time. I think I'm past my peak but I have cycles that last months and am getting awakened every morning several times to hit the O2. Thank God for that stuff. Minimum K-10's. My Father goes to the Church behind the store at Mich & Denton. I worked at Willow Run Airport for 17 years. I'm seeing my Nuero today and I'm going to ask about that nerve block you had. Good luck, Skyhawk |
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Title: Re: So I went to the MHNI yesterday Post by kshodges on Apr 19th, 2007, 10:43pm Wow - glad to hear the verapamil is working for you. That is so awesome! So far, I have not experienced the same relief. I am chronic, so my cycle just finished but will be back in two weeks. I am giving the Verapamil a longer chance this time, in hopes we can find a dosage that works for me. Unfortunately, even though I am not having headaches, I am still taking 1 80 mg 2x a day. We're just keeping it constant in my body for now. No reason to up the dose until the cycle hits again. Then, I'll have a better idea. She also mentioned the possibility of taking lithium with the verapamil if the verapamil doesn't work. Ugh. I got my clustermask today actually, but have not used it. It's a complicated little contraption! Got my new O2 tanks today, too. I haven't used oxygen in a long time. They've updated the tanks since I last used them. They call this one a "grab n go" since the regulator is built right in. Cool, so you just turn a big dial and it goes as high as I want - up to 15lpm. On, Off. I can do this! Hey, guess I don't have to buy the other (high flow) regulator after all. :) Thanks for your reply. Glad the Verapamil is helping you!! Cheers! Kelley |
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Title: Re: So I went to the MHNI yesterday Post by UN solved on Apr 20th, 2007, 12:38am Glad to hear your getting some relief 8) PF Wishes UNsolved |
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