Migraine

Hello Everyone-
Yes, I have been gone a good long time and I probably should have stayed away rather than bringing in more of my angst.

My migraines are getting a lot worse. I awaken with a migraine every moring in the wee hours- usually around 4 am. If I am lucky I can try to lay my head down to sleep again but often, as today, my head hurts worse when I try to lay down and so I try to sleep sitting up leaning back in my office chair. While the symptoms may calm down after a couple to several hours they always come back. I had 5 episodes yesterday.

I have been taking time off work, which we cannot afford. I have to borrow money from our joint account to pay my personal credit card bills and then some bill or another that should be paid for the house doesn't get paid. My boss has been really decent about it. I took the bull by the horns and went in and discussed it with him. He knows I am going to Mayo in November and tells me whatever I need to do to support my health he doesn't have a problem with.

At least that hasn't been a worry. But now he is instituting a rule that is you aren't coming in you have to call at least 4 hours ahead of time- if not you get suspended without pay. And other things regarding absenteeism and tardiness.....and I don't know if they will apply to me or not. I guess I have to go ask him again. But on the other hand it isn't very fair if I am excluded and everyone else has to follow his new rules. Sigh.

I am, it seems, in pain all the time. And I never feel good. My eyes are all twitchy and jumpy and I feel odd, get numbness and nauseous and pukey and all those wonderful things that go with migraines.

I don't have an apointment with my headache doc until after Mayo- I guess he figured it didn't make any sense since I wouldn't let him treat me in the way he felt most prudent.

I am struggling not to take something to abort my headache since I don't want to get rebound as well. I mean, several migraines a day- I would be taking several abortives every day and that would not be helpful at all. How does one deal with almost constant migraines and know there is nothing one can do but a cold pack and a dark room? And my dogs are so lonely. I spend so much time in my room.........Tonight my daugther wanted me to lay on the couch but I am not comfortable there...

I am so depressed and unhappy and confused and upset. There have been many times I have had to fight away the thought of emptying my medicine bag down my throat or drive off the road into a tree. With my luck though I would survive and be in even worse shape! And I am still too much of a coward to do anything along those lines. But it is very hard to convince myself that everyone, including me would be better off if we didn't have to live with my complaints and illness and pain any more.

I am pretty much a mess both physically and emotionally but I am struggling along. I came here in desperation because I figure someone will understand why and how I feel this way. My family means well but they just don't have a clue.

I hope every one of you who reads this is doing better than I am!

Dawn

Dawn,
I don't know your history or why you won't let your doctor "treat you in the way he felt most prudent" but I guess I would say you have made a choice to wait till Nov and Mayo to make changes to your treatment, yes? But you obviously are struggling emotionally. Have you ever talked to a professional counselor about those issues?

I really don't have any answers for you, only you can decide what is right for you. But I wanted to post because I hate when people read posts and don't reply. But know you are worth taking care of, for yourself and for your family. I hope and pray you find the help you need.

take care,
lisa

Dawn,
Like Lisa I'm not really sure what to say but I wanted you to know that I'm thinking about you and worrying. I wish there was some miracle cure that would make us all better. I total understand your emotional angst. I'm right there in the same boat. The constant pain is torture. I haven't been posting as much as I'd like either because I've just been so down. I also know that sometimes doctors make things more frustrating. I'm not sure why you've chosen not to let your current doctor treat you the way he thinks is best, but we know what works for us and what doesn't and if he wants to do something you're not comfortable with, more power to you for going for a new opinion.


and even when you're down I hope you can come here anyway. Even if I don't post reading helps me feel less alone.

Meli

Dawn,

Many of us have been where you are. The important thing right now is to find someone to talk with so you don't do anything drastic. If you're in crisis, and there's any chance of that, please read If You're Having a Crisis.

It's not that we don't want to help you, but none of us is trained in suicide prevention, and HealthCentral isn't a hotline.

We ARE here for you, Dawn. We can certainly offer you support and encouragement. But if you need to talk with someone, please do follow that link and take care of yourself. OK?

I know it's so hard to wait and so hard to find the right treatment by trial and error, but it can be done.

Hang in there!

Dawn,

Big hugs and a lot of love for you! It is so difficult some days...! All of here can relate.

I know that sometimes outside of a migraine you feel fine...Optmistic, probably. However, it does not hurt to look into counseling as an additional therapy to help you focus your mind and your feelings about the days you have to regrettably stay in bed. Many of us seek psychiatric help. it doesn't necessarily mean medications, but talking to an objective outsider is sometimes the best thing you can do for yourself, provided that they know how to deal with chronically ill patients.

With daily migraines, sometimes resting and taking it easy is all you CAN do. It's so hard not to feel guilty...I tell my husband "sorry" so many times I can't count. But I think it sounds like your family at least understands that you are going through something you have no control over. Sometimes my favorite thing to do is lay in bed and ignore everything going on outside because it gives me peace of mind. You have to focus on yourself when you are sick, and there isn't anything wrong with that.

Keep in mind with abortives - and I know you said you avoid taking them constantly - there is a strict limit on all of them on how many you can have in a 24-hour period, so even if you abort a migraine and trigger again, taking 2 or more than that is a huge no-no. If your migraine begins again within a 4-hour time period, that means it's likely the same migraine as before and your medication just didn't do its job. Some triptans will allow a second dose after 2 hours if the first dose didn't work, but not all of them. You need to check with your doc or pharmacist. After the 4-hour mark, a new migraine might kick in. Time limits are good points of reference when dealing with chronic migraines. You know better whether you are dealing with a new beast or the same one that's been kicking around for the entire day.

My heart is with you...Take care.

Dawn:

I think we can all relate to how you feel, even the occasional temptation to do something self destructive because we believe we are too emotionally and physically exhausted to go on....

But hang in there! There is light at the end of the tunnel for all of us. I hope you can get some good treatment at the Mayo Clinic.

I wanted to second what Leeloo said about maybe seeing a therapist. I started in July, and only go every other week. Really all I do is sit and vent for an hour about everything that is bothering me. But I find it helpful. I know a lot of us here see a therapist, because being chroncially ill takes its emotional toll.

I also want to add if your company has 50+ employees, please apply for intermittant FMLA. It will provide you job security for abcenses and such. Also, since your boss is so supportive, talk to him about how the new policies apply to you directly, and explain your concerns. You might be surprised.

Also, don't ever think you should "stay away" because your upset and need to vent. That is precisely when you should drop by! We are all here for you.

Kelly

Thank you all for the support and listening to my gripes. I have seen a therapist in the past. I have been thinking about trying to get an appointment with her again....it is difficult because of my work schedule. Actually part of my treatment plan is supposed to be seeing a therapist but she and I had decided I was doing well.....that was a while ago. She keeps up with me on facebook. I will get in touch with her. She really understands...she suffers migraines as well.

I am not in suicidal crisis. I am just sorely tempted. If the temptation gets too great I will make that call.

I know not to take too much of my abortives. That was what I was trying to verbalize. It is very frustrating because dang it you want to try to do something! Anything! But you know you can't.

The reason I am going to Mayo is that my doctor wants to perform a VP shunt and I have not been thrilled with the idea. I just don't like the idea of yet another surgery let alone BRAIN surgery. I already have head troubles....with my luck this would make things worse not better. He finally made arrangements for me to see a Dr Mokri at Mayo for a second opinion who he is certain will back him up.

I have been treated for migraines and for psuedo tumor for more than 20 years now. They have pretty much tried everything- more than once. My question to the specialist was....am I running out of options. His answer was the VP shunt. Especially since an LP makes an immediate and drastic difference in my migraine. But I am still scared. Not sure this is the right option. I am sensitive to so many things. I even got hives from my CPAP mask and had to discontinue use! How would my body react to the tubing and valve?

I think I am going to try calling my specialist - he isn't aware of how bad things have gotten. Maybe he can somehow come up with something to help....although God we have tried it all!

My family- no I don't think they do really understand. I mean, they know I am hurting and that it is bad. But they don't really get it and I guess I am happy they don't in some ways....I think to really get it you have to suffer with this. My husband, well he is sort of emotionally absent. I think the way I have been feeling upsets and scares him (I am his security blanket) and so instead of reaching out to me, or talking to me when I really need to talk things out he withdraws. If I want to go to the ER and it is late at night he seems mad. After all he has to get up early in the morning.

To top it off I attended the Mayo Clinic Pain Rehab Center a few years ago. THey really screw with your head. By the time you leave you believe that you shouldn't have any specialists- just one doctor. NO ER! That you should not vocalize your pain because it causes it to be worse. That even if you hurt you have to make an effort to get out of bed, put on your makeup, go out and be social, attend family functions or work. You can't limp, cry, wear dark glasses, an ice pack hat, use a cane whatever it is that causes you to outwardly show you have a problem because you are just being a hysteric and wanting sympathy and if you get it you are making yourself feel worse. You shouldn't take ANY abortives or pain meds. (If you absolutely had it it was the VERY last ditch thing you could do and you better really need it!) And you have this overwhelming guilt if you backslide and don't follow any of these directives. It was really hard for me to shake some of that off. Some of it remains. I rarely go to the ER or even my regular doc about a migraine and don't call the specialist. I had to really work on taking my abortive right when a migraine started. I try hard not to vocalize my pain to those around me....they don't want to hear it anyway, right? Instead of lying in bed at night crying I will get up and go downstairs so I don't bother my husband.

I am sorry to write another novella!

Thanks again for the support, it is truly appreciated.

Dawn

Hi Dawn,

I can certainly feel for you, as I also have IIH and Chronic Migraines. I haven't been dealing with these illnesses as long, but I haven't really ever felt well as long as I can remember (I'm 26 now). It can be just so exhausting and debilitating to be in pain all the time.

I recently came across a website chock full of information specifically about IH and wanted to link you to the treatment page. I know you've been on high doses of Diamox and other meds, to the point that your doc thinks you need a VP shunt. Thought I would pass this along to you, in case there's something new there you haven't discussed with your doc.

Medication & Surgery: Intracranial Hypertension

I also wanted to add that if you're not comfortable with the second opinion of the Mayo doc, please allow yourself to get a third opinion, perhaps from a doc outside the influence of your current one. In your place, considering getting a VP shunt, I would be getting as much information as possible before making the decision. And I'd want to make sure that the docs I talked to weren't all in cahoots, you know?

Regarding the pain rehab you did a few years ago, something important to keep in mind is that Chronic Migraines are not "just" another type of chronic pain. Migraine is a real, neurological disease that can require aggressive treatment, which may include abortive and rescue drugs. Too often it seems that pain management programs (especially the rehab ones) aren't really the best place for Migraineurs because our pain is unique. Our pain is only one symptom of a complex disease, and because this disease has links to other, serious conditions, it is very important to find effective treatment. You're doing the right thing when you take your meds or go to the ER, because aborting a long-lasting Migraine reduces your risk of Migrainous Stroke.

I don't say any of this to dismiss the severity or realness of chronic pain. But it is important to understand the differences. Remember that a pain rehab clinic may operate under the assumptions that you're abusing pain meds and may treat you that way. (Hence laying on all the guilt.) If you're not abusing your meds and you are taking them as directed, try not to let yourself buy into the guilt. Remind yourself that you have a complex, neurological disease, and one of the forms of treatment is medication. Treating the attacks of this disease is very important, so don't let yourself feel like you're "making it worse" on yourself.

Hang in there, sweetie. We're all here for you, and understand what you're going through.

Thanks MJ and also thank you for the link. I have been to that site, I don't know how I missed that info but I did. Actually it helps to validate the headache docs position. I don't respond to meds...if I do it is very short term. The only thing that makes a big difference is an LP. He has been trying to tell me I am out of options and I have not been listening. But I am not just going to cave...I need to at least see Dr. Mokri to get his opinion. When I went to Mayo several years back they actually said they weren't too sure I even have IIH so I guess I want another opinion on that!

The pain rehab...I was sent for overall chronic pain. I was having horrible back issues and couldn't even walk a block without extreme pain. So I was seen for that, for my fibro, my arthritis and my migraines. And yes, they definitely emphasize getting off pain meds. Of course the thing there was...I didn't and don't use narcotics and use OTC abortives sparingly. And I was in a 3 week program with people that had internal narcotic pumps or were addicted. They used a model from a well known drug/alcohol rehab program for much of the PRC. I didn't really feel I got much out of it until the 3rd week when they quit addressing addiction so heavily. Especially since I don't have an "addict personality" or so I was told. I guess some people are more likely to get addicted than others and I am not the type. Although the physical reconditioning for the whole period was probably the very best thing I could have done!

Anyway, thanks again. I appreciate all the support I am getting. It is also nice to hear from another IHer- it would be nice if we had a forum although perhaps the other types of headache is the one.

I appreciate the support. Now that my doctor seems to not want to deal with me until I play ball, well, I am probably worse off that I was emotionally!

Dawn

Dawn,
I spent three weeks at the PRC in March and tried so hard to follow their recommendations since they were so POSITIVE that they knew how to treat pain. It wasn't until I missed another four weeks of work due to my migraines and started fantasizing about driving off bridges that I realized that while it may work for some, it just wasn't the best for me.

My therapist was wise and told me to take what I could use and to leave the rest. I came back to this forum rather sheepishly as some had recommended a particular doctor a year ago when I asked. Since going to the PRC, I hadn't gotten back on this forum because they specifically told me that it was a "pain behavior."

While there are good things I learned from that experience, it did not change the fact that I have unremitting and debilitating migraines. I had hoped it would, and I really did try. I felt very guilty for failing "PRC 101;" however, I found a super migraine specialist and came back here. My experience has been that this has been a more helpful and hopeful experience for me.

Don't beat yourself up about staying away and coming back when you need help. I can relate, but my experience has been that everyone here is so supportive!!

I almost feel like I'm in some weird 12 step program! "hello, my name is Cyndi and I have chronic migraines."

Having people who "get it" to talk with has helped talk me down from the all alone feelings I've had which have driven me to think about doing something stupid. I, like you, would never do it, but it is still a very scary thought, isn't it?

Well, I've rambled, but I wanted you to know I can relate to the PRC issue!!

Hugs

Cyn

Cyn-
I am so glad to hear from someone with a similar PRC experience! (Not that I am happy you had the experience mind you!) And my therapist was just livid about many of the things they brainwash you with and the associated guilt. She helped me realize that there were lots of things in the program that don't apply and some things that could be helpful. But to be honest, the guilt is still there, bubbling under the surface. I feel like I have somehow failed.

It was actually my head pain neuro who made the arrangements to go to Mayo (not the PRC) in the first place. He knew I needed to get off some meds and try and get some of my medical issues under control. It was the doctors at Mayo that referred me to the PRC. The odd thing was that suggestions from the doctors at Mayo did not gel with what the PRC demanded, including using my TENS unit for my back and neck issues, taking abortives, etc.

I always was impressed by my neuro and truly felt he was working to find a solution for me. And he was interested in all of me not just my head. Then he moved to PA and I got the doc I have now....

This group is very supportive I know. And it is so helpful that they get it. That is why, even though I feel badly about coming to gripe and moan once again, I am drawn to the people here. And here you are dealing with your heavy issues and still supporting me. It isn't something I deserve, I have always been the strong one, but that strong one is in bits and pieces right now and to have y'all to talk to and to know that others are going through the same thing does help put things in focus.

I wish I could be like so many of you and although falling to pieces share my experiences and offer support. Hopefully that day will come soon. It isn't good for me to focus on my pain and depression- it doesn't help I know. But right now....well my strength has fled this tired being.

Bless you all!

Dawn

((Dawn)),
For me the ultimate blessing of all this is that none of us get what we deserve, but far better. So don't put that guilt on yourself - just celebrate finding a place where you don't always have to be the strong one. And where people will walk the walk with you.

I do think the best thing I got from the PRC had to do with attitude - and I frequently have a lousy one! And there are plenty of times when I go into the fear or depression mode, but I'm trying to keep a gratitude journal and it does help me.

Everyday, even with migraines, there are lots of little serendipities. For me, one of them is hearing what you've had to say, as well as this wonderful forum.


Please let us know how things go at Mayo!

Cyn

Dawn

My heart breaks for you dear. So many times have I felt similar to this. We have to deal with some very hard crud when we deal with this disease. I completely think that you are valid in your feelings. But please don't struggle alone. I am so glad that you came and shared this with us and please keep talking to us. We may not be able to tell you how to get through this, but I know that we all are good at listening and understanding. Hang in there, I know that you will find some control in your life agian and things will get bettre for you. As hopeless as it can seem, know that there is still hope, ok? I am praying and pleading to God that you get some relief soon! Do let us know how you are!
and to you!
Alaura

Thank you - every one of you- for your patience, your time, your wisdom and your love and support.

I just wanted to let folks know I did make an appointment with my counselor. I will see her next week.

Be blessed!
Dawn

Trust us, we all have our falling apart moments. I had another one on Tuesday night.

I am glad you have made a counselor appointment, and I hope that it will help you. Glad that you got in quick, too! Hugs.