Migraine

Hey all...

I had no idea where to write this and was hesitant on actually writing. I dont want to sound like I am 'whining' or anything or be a bother to anyone. But... I dont know.

My clusters have increased dramatically over the last week and I am just losing it. Instead of getting an hour in between attacks (granted there were shadows there), I am getting hit for an hour or two and then an hour of strong shadows and then another attack. They are all tens on the scale, the shadows being around seven or eight. What is going on?

I am so tired right now both physically and emotionally. I have been talking to my doctor and trying to arrange to get to Arizona to see a doctor at the Mayo clinic but I was just informed that there is atleast a three month wait. I can understand that they are booked, I really do but it is still beyond frusterating.

What am I supposed to do? I cant deal with the headaches right now - there are no preventatives that work and the one abortive (benedryl injections) that helped some arent doing much and I can only take them four times a week.

How do you get the doctors to listen to you when you say that you have had it? What do you do when you feel like you just cant deal with another attack?

I am sorry that this is so long, I have been sitting here crying. I am so tired and angry and I just feel like I am falling fast.

Thank you for reading this... and I am sorry to offload on you guys again.
Jill

Jill,
Somehow, someway, get yourself into your doctors' office RIGHT NOW. (Teri, other moderators, am I right in saying this? Jill's been in misery, it sounds to me, fo WAY too long!)

Get someone to call ahead & let them know you are on your way. Don't take no for an answer. When you get there, don't leave without being seen. Wear earplugs and sunglasses if you have to. You deserve some kind of relief and answers.

Also, make the Mayo Clinic appointment. Three months will fly by.

I just got home from an appointment with the new PA at my neuro's office. I made the appt. yesterday afternoon, after my 4th migraine in 13 days. I've been bumped up to 200 mg topamax (from 150) a day. Had to do some educating, which is SO hard when I hurt.

Took daughter Sallie along, 1) so I wouldn't forget (had earlier called steak knives "stable knives", confusing "steak" and "table") and 2) to educate her. Ended up educating the new PA more than Sal.

Just took phenergan & Aleve & am off to bed. Thunderstorm followed us home.
Rebecca

quote:

Originally posted by Jill:
Hey all...

I had no idea where to write this and was hesitant on actually writing. I dont want to sound like I am 'whining' or anything or be a bother to anyone. But... I dont know.

Nope. Wrong answer- This forum is the place to vent and ask for support! Seriously.
Repeat this, if you feel the need. "This forum is a place where it's PERFECTLY OKAY for me to talk about my feelings,ask questions, ask for support or address other issues related to headache and/or migraine disease"

We have a whole folder titled "Vents, Gripes and Support." That's there for any member of our family to use- whenever needed. Seriously. And remember- it's not a burden to vent, or ask for something you need around here. That's the beauty of this forum- and specifically of the people who make up the forum family.

quote:

My clusters have increased dramatically over the last week and I am just losing it. Instead of getting an hour in between attacks (granted there were shadows there), I am getting hit for an hour or two and then an hour of strong shadows and then another attack. They are all tens on the scale, the shadows being around seven or eight. What is going on?

Your doctor should know about that increase... if they don't already! Call and let them at least know about the increased activity- even if there's nothing that can be done immediately, it's good to have something like that noted in your records...especially if your doctor is trying to get you to another place like Mayo- it may help fill in more of the picture.

quote:

I am so tired right now both physically and emotionally. I have been talking to my doctor and trying to arrange to get to Arizona to see a doctor at the Mayo clinic but I was just informed that there is atleast a three month wait. I can understand that they are booked, I really do but it is still beyond frusterating.

Is there a reason why you want to go to the Mayo clinic in AZ as opposed to any other clinic? If you're in Maryland or Jersey, you're not far from the Jefferson clinic- (Philly) where several of our forum members go, and have had GREAT success with doctors who practice there... (Teri- are you out there?!)

quote:

What am I supposed to do? I cant deal with the headaches right now - there are no preventatives that work and the one abortive (benedryl injections) that helped some arent doing much and I can only take them four times a week.

I'm not on my home computer- don't have my info or links handy- but I DO remember that there are meds- including preventatives that are used for clusters, and that Oxygen can be used in aborting clusters... Hang on... I know it's here somewhere!

AH- Here we go! Information! Teri has written a great intro on Cluster Headaches. You can find page one of her summary (which includes some treatment ideas) over
here

quote:

How do you get the doctors to listen to you when you say that you have had it? What do you do when you feel like you just cant deal with another attack?

I come here and vent about it- knowing that even if others don't have the exact diagnosis that I have- I'm a migraineur, also have tension-type-headaches... They understand a lot more than anyone else that I'd normally talk to offline.

quote:

I am sorry that this is so long, I have been sitting here crying. I am so tired and angry and I just feel like I am falling fast.

Thank you for reading this... and I am sorry to offload on you guys again.
Jill

Oh, bigggggggg Hugs, Jill! Never feel sorry for coming here and talking. You've got a bunch of people who care, and have HUGE hearts. So Sorry you're feeling this awful.
If there's anything we can do... or if you want to talk some more, you can always post on the boards, or if you want to email a moderator or the experts, you can do so... we're here for this kind of thing. Ok? Got it? Good!

Now, if you can read that article, I really think it would be helpful... You can even print it and take it to a doctor- maybe one of the basics in the article can help you get your doctor to help until you get to Mayo (or another clinic)

With very gentle hugs,

Hi...

Well...I have been through another hard attack since I last posted. Somehow I manage to get through them though I am exhausted and fed up with it all.

I have called my doctors office and left a message on the nurses line - now I just have to wait for them to call me back. I didnt really think that I could just go in there and think that I would be seen - they have so many patients and all. If I dont hear from them than I might just do that.. this just sucks.

quote:

Is there a reason why you want to go to the Mayo clinic in AZ as opposed to any other clinic? If you're in Maryland or Jersey, you're not far from the Jefferson clinic- (Philly) where several of our forum members go, and have had GREAT success with doctors who practice there... (Teri- are you out there?!

I do go to Jefferson Headache center, I actually have Dr. Young as my neurologist. It is Dr. Young that wants me to go to Arizona to see Dr. Dodick - he is supposed to be an expert in the field much like Dr. Goadsby but not as well known yet. He also wanted me to try to see Dr. Goadsby but he wont be on staff in California for awhile.

My doctor doesnt know what to do - he has tried all of the preventatives that he can think of (new and old) and all of the abortives out there. Oxygen doesnt work for me, something about the air pressure making my head hurt more. I am just that ten percent that he doesnt know how to help right now. Which just leads me back to what am I supposed to do?

As far as the three month wait, that is the least amount of time that it might take. At that clinic, they make you answer some questions about your headache and fax them all of your records. Then the doctors look it over and decide if they will see you. If they decide to than you go on a waiting list and wait for the call that they can make an appointment. So far, I am not even on the waiting list.

The problem with waiting is that I cannot live with my mom anymore unless I get a job which I cant do because of the headaches. Right now I am staying with my aunt but she keeps saying for two weeks, not sure what is up with that yet. My goal was to go back to Sweden in September to be with my boyfriend who I havent seen in a year now. It is just alot to handle.

This post is getting long, I didnt intend for that to happen. I am just so sick of hurting right now and I am so tired, I cant imagine going through another KIP ten attack and yet I know that it is coming. I HATE this.

I have to get off of the computer for now. Thank you for the help and I will let you know what happens.

Jill

I hope there are no more cluster attacks today (Well, actually I hope that there's never another one, but I'll be more practical in the hoping department.)



Feel better soon, and I hope you get some relief ASAP from these monsters!

Hi Jill. By the time I got to your last post, you had covered every idea I had!

So I'll ask why you're limited to four benedryl injections a week? And I couldn't figure this one out - is Dr. Young still your neurologist?

Hi...

I got off the phone with Jefferson a little while ago and I have an appointment first thing tomorrow morning with the nurse practitioner and then Dr. Young will talk with me. The nurse said that he said that I needed to have patience while he waits for the doctor in Arizona to email him back.

But it isnt patience that I am lacking, it is the inability to handle the attacks and so many of them. They had me in tears on the phone because no one will hear what I am saying. Maybe there is nothing that he can do, not sure I can handle that right now though. How do you get through to them how desperate you are?

So, yes, my doctor is still Dr. Young. I am sorry about the confusion, my brain isnt quite working that great today.


As to the benedryl, I am not sure why it is just four injections a week but that is all they give me meds for. I can usually do an extra one though - maybe it has something to do with reactions. Kind of like only being able to take so many imitrex or zomig a week.

I guess that we will see what happens tomorrow and I will just have to hope (dont have much of that left) that I can get through to him that I am in desperate need of some sort of help. I understand that he wants me to see this other doctor but what do I do in the mean time?

How do you keep fighting when you just dont feel like you have it in you?

Thanks
Jill

Hi Jill

You must be asbolutley exhausted from all your pain, not to mention frustrated, angry and depressed. Hang in there, the doctors you mentioned will be able to help you.

I wonder, when you feel ok, before the morning, if you wrote down what you have been going through so you won't be so emotional tomorrow. I'm not saying there is anything wrong with emotions, it would just help Dr.Young get a good idea, on paper,about your head pain. These are some points taken Your Role on Your Health Care Team

"Provide information: Keep your headache or Migraine diary current as well as any other notes on symptoms or events that you need to tell your doctor about at your next appointment. If you do this on the computer or transfer it to the computer, you can print two copies for your appointment – one for the doctor and one for yourself. That way, you can both be looking at it as you discuss it.

Be organized: As you think of questions you want to ask at your next appointment, write them down or start a document on your computer. Before your appointment, get them typed up on the computer. Leave space between them so you can take notes. Again, make two copies so you and the doctor can both look at them as you discuss them."

This way you can have a plan when you see them, and don't hesitate to explain your quality of life, or lack thereof, is being effected by your head pain. Not being able to work, due to Migraines, certainly effects every aspect of your life now.

I hope this helps some. Please let us know how your appointment goes when you feel up to it.

Okay.. so here is the update.

I went in first thing this morning to see the nurse practitioner and to talk to my neuro. The nurse practitioner spent about five minutes going over things and then another five minutes getting vitals before she went to talk to the doctor.

The result? They upped one of my medications, that was it. They also told me that Dr. Dodick in Arizona would see me but that I had to wait the three months or longer. Dr. Young said that he would try to expidite it but there was no guarantee and I dont think that he can.

So then they let me go. I was so upset and hurting that I had to sit in the hallway to regroup which meant that someone went and got Dr. Young. He told me (not yelling persay but strict) that no doctor would touch me with a ten foot pole if I was upset. And he told me that there was nothing that he could do and walked away. Just like that.

Now I understand that they dont have alot of options but come on.. there has to be something. I have done everything that he has asked of me - I have done the medications, tried the surgeries.. all of it. And I dont expect a miracle in that it will just stop, I just want them to slow down.

I feel like I have been completely ignored and no matter who I tell that I just cant go through another attack, no one hears that.

And I know that they dont like emotional people but when you are tired and hurting and frusterated and feel like you are just losing it all together - how can you not cry? I am not usually like that but when the pain is too much to bear, I cant help it.

So what do I do now? He doesnt want to see me for a month and I am not sure I can even make it another day. Where do I go from here?

I am sorry that this is so long and all... I have just had it with everything right now. Any thoughts would be appreciated...

Thanks
Jill

Jill, I know it seems frustrating, but you can get through this.

My one thought is your emotional state can't be helping, but I know you're very frustrated.

I know being upset exacerbates my migraines. I know it's hard to settle down.

Please take care.

Ok Jill,
I know first hand how doctors "get" when we are emotional at our appointments, they stop listening, for whatever reason.

You are seeing a good doctor, and have the option to see two others. That is really great. But in the meantime you may be getting depressed (how could you not be?) Have you considered speaking with a counselor about coping with a chronic illness? It can make a world of difference in your health. What about talking to your PCP about antidepressants if you are depressed?

Having dealt with chronic pain for over 10 years I can really understand where you are coming from. There are some days I don't know how I made it through, I just did. I try to take one day at a time, sometimes one hour at a time. If I can make it through that hour, then I can do the next one. Yes, it gets real old, but it works. Focusing on the long term, like three months till I see the next doctor, can do more harm than good. I know this doesn't take care of your head pain, but it may help you cope a bit.

Hang in there.

quote:

Originally posted by Jill:
Okay.. so here is the update.

I went in first thing this morning to see the nurse practitioner and to talk to my neuro. The nurse practitioner spent about five minutes going over things and then another five minutes getting vitals before she went to talk to the doctor.

The result? They upped one of my medications, that was it. They also told me that Dr. Dodick in Arizona would see me but that I had to wait the three months or longer. Dr. Young said that he would try to expidite it but there was no guarantee and I dont think that he can.

So then they let me go. I was so upset and hurting that I had to sit in the hallway to regroup which meant that someone went and got Dr. Young. He told me (not yelling persay but strict) that no doctor would touch me with a ten foot pole if I was upset. And he told me that there was nothing that he could do and walked away. Just like that.

Now I understand that they dont have alot of options but come on.. there has to be something. I have done everything that he has asked of me - I have done the medications, tried the surgeries.. all of it. And I dont expect a miracle in that it will just stop, I just want them to slow down.

I feel like I have been completely ignored and no matter who I tell that I just cant go through another attack, no one hears that.

And I know that they dont like emotional people but when you are tired and hurting and frusterated and feel like you are just losing it all together - how can you not cry? I am not usually like that but when the pain is too much to bear, I cant help it.

So what do I do now? He doesnt want to see me for a month and I am not sure I can even make it another day. Where do I go from here?

I am sorry that this is so long and all... I have just had it with everything right now. Any thoughts would be appreciated...

Thanks
Jill

Hi...

Why do doctors stop listening when emotions get involved? You would think that they would realize that maybe that patient needs more information or advice or something... I dont even know what.

I know that Dr. Young is a good doctor but I think that he is getting as frusterated as I am. Right now I am limited to just the option of seeing Dr. Dodick but that is for major surgery and I am not sure that that is the best idea. I dont know anymore.

I did call the Diamond Headache clinic today to see about trying their histamine treatment again. And, as the appointment maker (not sure what that word is right now) told me, I emailed the doctor that I have seen to see if he would try it again. My thought is that that is safer than surgery and what if it helps? I have to exhaust all options.

As to the antidepressant - I am on Lexapro right now but I think, or rather know, that I am just worn out both physically and emotionally.

Thank you so much for the help, advice and for listening.

Jill

Hei Jill,

I sorries to hears of howmuch pains you has be in. I has only has a level 10 pains twice andthat was rights after brain surgerie. I no can imagines to lives wit 10s eachday.

I prays tht you getsinto that clinic in AZ sooner than 3 month and that you current doctor can finds some ways to helps you ease pain at least a littles bit til then.

I also does hopes you gets go to Sweden in Sept. I imagies it so hard to be aparts fra boyfriend for so wery long.

Sweden is so beautyful, no as beatyful as Norge but hmmmmm I tads bit bias on that. *smiler*

Gentles Hugs,

Sol

I get relief from my cluster headaches from Axert, which is a migraine abortive.

It doesn't touch my migraines, but it wipes out my clusters for at least 24 hours and frequently longer than that. And does it within about 10 minutes.

I'll be praying for you, dear one. A person would almost have to have cluster headaches to believe them.

God bless everyone who truly sympathizes with us.