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Cluster Headache Help and Support >> Getting to Know Ya >> Is there any hope for me? http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1331062741 Message started by ariel on Mar 6th, 2012 at 2:39pm |
Title: Is there any hope for me? Post by ariel on Mar 6th, 2012 at 2:39pm
Hello, my name is Diane, & I'm new here. Here's a bit of my background story.
I've been having these headaches for about 20 years, and most of those years I've been chronic. I've been on all the the preventive types of meds, and the only one that ever worked was prednisone. It gave me osteoporosis in my hip & spine that took 5 years to reverse with fosomax, along with all the other wonderful side effects (severe cushings). I always could count on the prednisone, though. So, about 9 years ago, after talking with a few high risk pregnancy specialists, I made the decision to try to have a baby & take the prednisone throughout my pregnancy. When I got pregnant everything was fine until my 2nd month, then the headaches began, every few hours, round the clock. I had nerve block injections, was hospitalized with a steroid IV & oxygen, nothing helped. I used 1/3 dose shots of imitrex for some of the headaches, because I started vomiting from the pain, and I almost lost the baby because of that (it caused a uterine tear). I was faced with an impossible choice, use imitrex & risk the loss or don't use it & risk a loss. I stayed on bed rest, though. At 6 months, the headaches stopped, thankfully, but damage was done & I had to remain on bedrest for the entire duration of my pregnancy. My son was born a month early, but he was healthy. I thank God for him every day, but I also feel sometimes that I was selfish in trying to have a child with my headaches. My son is 8 years old. He has autism. Its mild, but he has it. He also has adhd. And its my fault. Its my fault because I couldn't take the pain. I'll always have to live with that guilt. So, here I am now, I'm divorced, after a 20 year marriage, blame that on the headaches as well, I've been on verapamil (short acting) 4 times a day & topamax & I take half a shot of imitrex when I get a headache. I'm at about 2 a day now, but that is creeping up, soon it will be one waking me an hour after falling asleep, then another at 6am, then every 4 or 5 hours around the clock, depending on how much imitrex I use. My doc will be reluctant to give me prednisone again, because he knows my past history of being so hard to come off it. I've gone through this so many times, but I'm crying constantly at the thought of whats to come. My imitrex vials are old, too. They expired 2 years ago. I had stocked up on a lot of them back when Glaxo had the patient asst program for injections & I was taking prednisone. I'm almost out of them. I'm almost out of options. I don't know what to do anymore. Without Imitrex, I won't even be able to function as a mother. My son won't understand me saying "go play until my headache goes away." He just won't understand that. I don't have health insurance. Only my son has insurance. I pay for everything out of my pocket. I'm not eligible for medicaid, either. I fall right in the middle. Too much income for any kind of aid, but not enough to afford insurance right now. I have a RX discount plan at my supermarket that actually saves me money, but thats all. Okay, sorry for the long post everyone. |
Title: Re: Is there any hope for me? Post by ariel on Mar 6th, 2012 at 5:59pm
Hello, I have added my location to my profile. I'm sorry if I have posted in the wrong area, I'm not too familiar with posting on message boards. Thank you so much for all the information.
I live on Long island in New York (USA). I took a look at the article, it is very informative. I can say I have been on all of those medications, except the methysergide . I started with a neuro at Stony Brook University. That is where my long term prednisone use started. My current Dr is at the headache institute, & he is a headache specialist. He is the one who prescribed the verapamil. I've only recently started seeing him again. I'll be going again next week. I think he wants to try Nerve block injections, but I saw a pain specialist when I was pregnant & had that done & it didn't help me. I have looked around this site, in fact it was years ago that I learned about using half a dose of imitrex from here. If it weren't for that trick, I can't imagine what I would have done. I would have come up short so many times & suffered so much more. I took apart the cartridges & used a q tip to push the medicine into empty vials, so I could later draw up exactly the amount I would use. To whoever posted that, it was a lifesaver. I've also read about the energy drinks, I'm going to buy some tomorrow, first thing & give that a try. I will ask my doctor about the vitamin d3 and fish oil plan as well. Its just hard for me to find time to look through all the threads because I have to look after my son. I don't have any caregivers or aides, its just us. Other things I've tried: a ganglion cascade, ritilin, methadone, an antidepressant (can't remember the name) stadol, depakote, nuerontin, lithium, indomethacin, propranolol, norvasc. Norvasc may be the only medicine that worked for a while, combined with depakote. Then the lab switched the depakote, or maybe something else happened, I don't know, but it stopped working. I don't know how much time I have before it will begin with the round the clock headaches. I think it will be pretty soon. I'm actually just feeling so sick of it all. I'm so depressed & sad. I don't even talk about it to anyone I know anymore. |
Title: Re: Is there any hope for me? Post by joannhi on Mar 6th, 2012 at 9:05pm
I felt the same way this evening. Didn't want to talk to my kids(they're much older than yours) or call a friend, but I made myself! I had an hour crying jag and it did help! Give it a try or complain to me. I too need someone who gets it.
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Title: Re: Is there any hope for me? Post by ariel on Mar 6th, 2012 at 9:13pm
I actually cried so much today, I think I'm cried out. But I think I know what you mean, because I seem to be feeling a little better than I did earlier, too. I guess we all have the meltdown, sometimes.
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Title: Re: Is there any hope for me? Post by joannhi on Mar 6th, 2012 at 9:33pm
I just found the boards last week and I'm still trying to learn them. I've just added you to my "buddy list" and I'll be on a lot if you need to talk. Hang in there and I will too.
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Title: Re: Is there any hope for me? Post by Bob Johnson on Mar 6th, 2012 at 10:13pm
Good to read that you are seeing a specialist: increases your odds of a good outcome.
Controlling Cluster demands no little patience for, as you have shown us, it ma take time to try and various meds and diferent doses to get the mix which is effective. Unfortunately, Cluster is not a one-fix disorder. Introduce our site to your specialist. Above all, don't try or manipulate any treatments, which he has not prescribed, without his knowledge. He needs time to see what's working (or not) and so mixing/adding new stuff will only confuse the picture. When you get get reestablished with the specialist, let us know what he is trying: med & dosing plus any advice he offers. |
Title: Re: Is there any hope for me? Post by ariel on Mar 7th, 2012 at 8:35am
I will do that. My appt is for next Wednesday. For now I am taking the short acting verapamil, 80 mg, 4 times a day, and 50 mg topomax 2x a day. That has been reduced from 200 mg a day because I could barely remember my own name.
I would like to tell people about the Norvasc. It was 10 mg, once daily & it did seem to work. My regular doctor put me on it. He said it was more for people with chronic migraines. That they had found people who were taking it for blood pressure were getting some relief. The medicine is very inexpensive. I had no side effects, but my doctor warned me of a common side effect of hand or feet swelling. When I started getting "shadows" I asked him to increase it, he was reluctant, but then he said I could take 5mg more at night. It seemed to do the trick. For a while, anyway. I was also taking 1000mg a day of depakote at the time. Like I said earlier, something happened, I don't know what. But after that, it never worked again for me. Oh, and guess what? He already knows about the message boards, because last month when I saw him I was still on the prednisone. When he asked me who was monitoring me, I said I was doing it myself & that I had a lot of it at home (he knows I'm a long time prednisone user) so he jokingly asked me where I got my medical licence, and I jokingly answered back "The internet" which sort of led into a quick convo about the message boards. Um, also, if I ever say anything that seems useful to anyone & I put it in the wrong place, please feel free to just tell other people. Thanks. Thanks for adding me. I'll do the same. I'm really glad I decided to join up here! |
Title: Re: Is there any hope for me? Post by wimsey1 on Mar 8th, 2012 at 8:27am Quote:
Hospital O2 did nothing for me, either. It is the wrong mask, too low a flow, and I did not use good technique. On the other hand, after following every bit of advice here, I now use O2 with a nonrebreather mask, at 25+lpm, coupled with an energy drink, to abort just about every hit. And I get hit 2-6 times per day and night. I mention this because so many have said O2 didn't work, but it means they didn't use it as described here. It may be worth revisiting with an eye to improving its usefulness. Blessings. lance |
Title: Re: Is there any hope for me? Post by ariel on Mar 9th, 2012 at 8:35am
Hi Lance. I had o2 delivered to me at home to try as well, it was a long time ago, prescribed by my neurologist. Truthfully, I don't remember the details of the flow rate, or even what kind of mask I had at home. But I have a feeling it was probably either too low a flow rate, the wrong mask, or both because this is going back at least 10 years. I will ask again about it. Can I ask you, how long does it take for the o2 to stop your pain?
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Title: Re: Is there any hope for me? Post by ariel on Mar 9th, 2012 at 8:38am
Thank you Batch for your reply. I will definitely be asking my doctor about the vitamin D3 therapy!
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Title: Re: Is there any hope for me? Post by Mike NZ on Mar 9th, 2012 at 2:32pm ariel wrote on Mar 9th, 2012 at 8:35am:
It's pretty common for people to be delivered an oxygen set up that is more appropriate for those with lung problems than one that works well for aborting CHs. I was sent nose canulas which would be almost useless. Typically when I use a non-rebreather mask and a flow rate of 25lpm I can abort in about 5 minutes. |
Title: Re: Is there any hope for me? Post by ariel on Mar 9th, 2012 at 3:21pm
5 minutes?!! That's wonderful. There have been times when I have just been laying down for a few minutes, felt that shadow coming & immediately got up & busied myself doing something. Its has sometimes (only sometimes) worked. But, laying back down would bring the headache right on. I wonder why that is? I guess what I'm trying to get at is, if you use the 02 & stop the CH, when you lay back down to go to sleep, has it ever come back an hour later, or have you been good for a few hours? Thank you for your reply.
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Title: Re: Is there any hope for me? Post by Mike NZ on Mar 9th, 2012 at 6:52pm
The first time I used oxygen to kill a CH I was in tears at the end as I realised it was a life changer. Some aborts take a bit longer, mainly correlated to either a higher pain intensity or if I've been delayed in getting onto the oxygen, which worked better the quicker you get onto it.
I can't really comment personally about CHs and sleep since 99% of my CHs are not when I've been asleep. |
Title: Re: Is there any hope for me? Post by ariel on Mar 9th, 2012 at 7:36pm
I remember how wonderful it was for me the very first time I gave myself a shot of imitrex. It was such an unbelievable feeling of relief to have that pain stop so quickly. So I know how you must have felt. It's a little scary thinking about trying something different to stop a CH when I already have something I know works. But, I'm sure O2 is healthier & cheaper. And, as I said, I am running out of the Imitrex vials. I've decided to tell him I will try it again...I will write down the flow rate that seems to work for people to show the specialist, and about the nonrebreather mask. If it works, even for just the daytime ones, it will be a lifesaver. Sometimes I take half of a sumatriptan tablet before bed, and then I am able to get away with using only one half of a shot of imitrex for a very early (6am ish) CH. The generic sumatriptan tabs (100mg) are inexpensive & have helped me avoid that 1st CH shortly after falling asleep sometimes. The reason I only take half is it saves money but mostly because its not taking too much in case I still get hit right away & need half a shot. Thank you for your help every one. I will let you all know what he says on wednesday.
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Title: Re: Is there any hope for me? Post by wimsey1 on Mar 10th, 2012 at 8:31am
My experience with O2 and abort rates has been about the same. Anywhere between 2-5 minutes. But that is with a high flow regulator (25-60lpm) and a nonrebreather mask. Using the regular setup (rebreather and 15lpm) it could take 15-20 minutes. At night, I will sometimes get hit every 40 minutes. When that happens, I keep my little E tank next to the bed and get a jump on it as soon as I awake. AFter about 3 in a row, I usually will use Migranol or Imitrex. Hope this helps. Blessings. lance
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Title: Re: Is there any hope for me? Post by ariel on Mar 16th, 2012 at 8:46pm
Thank you for your message. I am aware of this last resort option. For now, I am going to try to stick it out with the doctor and see how it goes as I am still early in his treatment plan. I won't let myself get to the point where I have no options, though, so your message is very much appreciated :)
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