Chronic Pain Support Group

Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...

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Brain & Nervous System
/ Chronic Pain Support Group

I'm scared.

BreezyStorms
BreezyStorms
This is my story:

The beginning of January I was on my way home when my head hurt so so bad. I had to pull over. I temp. went blind in one eye this lasted about 45 minutes of non stop exscruating pain and immediatley following that I got a migraine that physically put me under for a few hours. I naturally assumed that I had just a heck of a headache. But weeks went by and my head was throbbing. I couldn't do anything. I was dizzy all the time. It was awful. I made a doctor's appt and after many ct scans and mri's they noticed that the pineal gland in my brain was swollen. Seen a neurologist and he said that was causing my pain, it can't. (whatever I still say it did). Anyhow, he said that I have a chronic pain and that we'll have to deal with that. No, I don't accept that. So he put me on amitriptyline 30mg a night and then prescribed maxalt for me. Well amazingly enough the amitriptyline worked for 3 weeks, man I was in heaven. Now my head is just as bad as it was before I started taking amitriptyline. I just want to cry and cry but that will make my head hurt so much more. I am physically exhausted dealing with this. I don't know how much longer I can handle it. No one is trying to figure out the root of the problem. Nothing I'm taking works...I can't live like this.

My memory also is getting worse and that scares me to death.

So is there anything I can do? I don't even know if this discussion is what I need to be in. Any advise would help greatly.
BreezyStorms
BreezyStorms
"my neurologist said that that gland was not causing my pain"
deleted_user
deleted_user
It sounds maybe like a cluster headache. Those are the worst of the worst migraines. I take Topamax instead of amitriptyline. Maybe it will have better long-term effects? If they've ruled everything else out, you might just need to switch up medication. I'm sorry it's so bad for you. Hang in there.
carolmj
carolmj
Can you get your family MD to make a referal to a pain clinic? That seems more approp~ now than neurologists.
ZAZAS
ZAZAS
Call your doctor and tell him what you told us. It isn't usual for the first thing they put you on to not work or keep working. Dealing with chronic pain is more trial and error at first. Perhaps a pain specialist would be better. I am sorry you are in such pain, and hope you feel better soon.
deleted_user
deleted_user
Cluster headaches and some types of migraines respond amazingly well in to a type of high blood pressure medication known as a Beta-Blocker. This can work even in people with normal blood pressure. I have a friend that had severe migraines for years and had tried several different medications until she went to a pain specialist who put her on Beta-Blockers and they worked in just a few days and they are still working. They help prevent the blood vessels in the brain from spasming which is believed to be the cause of migraines and cluster headaches. I hope this helps you get your headaches under control. Good luck.
deleted_user
deleted_user
I have been taking amitriptyline for over 3 years now to help me sleep. Like many other drugs you can build up a tolerance, but it does help me sleep. I am now up 150mg & I know that soon I will need that raised. That is the only experience I have with it. Good luck - God bless, Paul
deleted_user
deleted_user
Have you had any bloodwork done? My son started getting migraines in January. After a CAT scan, the ENT thought the pain was due to sinus blockage. The neuro thought it was migraines triggered by the sinus problems and had him on topomax. After Topomax and sinus surgery he wasn't better and his fatigue got worse. My mother's intuition prompted me to ask for bloodwork. It turns out he has Lyme disease. He just started on the antibiotic on Tuesday. His headaches and fatigue are not gone, but yesterday and today his headaches were less severe and less contstant.

I'm not saying everyone who has severe headaches has Lyme, but that is my son's case. Even if it's not Lyme maybe something will show up on the bloodwork that no one thought of.

Also, re: beta-blockers I know someone who had success with those for cluster migraines.
BreezyStorms
BreezyStorms
I have not had blood work done...hmmm, that's strange that they wouldn't do it, right? I will ask for blood work. I am going to talk with my doctor in a few days regarding the blood work and ask him about a pain clinic. Thanks everyone. I did mention about the cluster headaches and my neuro didn't think that was it, but like you guys said maybe he is not the right person I should be seeing anymore. I do appreciate all your help. At least now I know where to start to try to get some relief. God bless you all.
deleted_user
deleted_user
You must at all costs keep trying different Neurologists and try seeing an eye doctor just to rule that out.

Much luck to you

Doug/Ouch
deleted_user
deleted_user
I also agree with callmeouch about seeing an eye doctor. When my son started with the headaches I talked to so many people. (It's amazing how many people get migraines!)One person said her daughter's prescription needed to be changed and after that her headaches didn't go away, but were significantly reduced. Even the anesthesiologist doing the sinus surgery suggested my son get his eyes checked too just in case it was more than the sinus problem causing pain. Even though we found out about Lyme, I'm still going to do that.

The situation with the headaches-sinus surgury-Lyme has taught me a few things: There isn't always only one cause for pain, things aren't always the way they appear, and keep asking questions and pursuing answers.

My myofacial pain hasn't gone away in years, but I have found some relief by asking questions and pursuing different treatments.
deleted_user
deleted_user
One more thing. It's not strange they wouldn't do the bloodwork. I expected it before his surgery, but the ENT had tunnel vision about the cause of the pain and said since "he was a healthy 14 year old boy" he didn't need it. I should have argued then, but I didn't. I'm the one who requested the bloodwork from his and my neuro during my own appointment because all we did was talk about how much this situation was increasing my own pain. When the reusults came back the neuro said, "you get credit for calling this one."

If you have any fatigue--even if you are told it is from the pain--ask for a Lyme titer and a mono test.

Good luck.
deleted_user
deleted_user
I am so sorry. I know exactly how you are feeling. I woke up with extreme pain after a laproscopic gallbladder. All the doctor kept telling me it was nerve and muscle damage from the trocars. But as the days went by, I kept getting worse. Nobody would run any test s to see if there could be something else going on. I went to St. Louis, they wouldn't even touch me. I called Mayo, they turned me down because they thought I needed to be seen immediately, and they had no appt. open. So I had to go to Texas, Temple Texas, to have any answers. I spent a whole week at Scott and White Diagnostic Hospital and I finally got the answers that I needed, and I finally could rest and know they weren't missing something. That peace of mind makes a world of difference! It was like a big weight was lifted off of me. So I know exactly how you feel. You might have to travel to Texas, or maybe even Mayo to get to the answers you need.
Good Luck! If I can help you with anything just let me know!
Pam
BreezyStorms
BreezyStorms
I went to the eye doctor first because I was sure the migraines/headaches were caused from eye strain, but the eye doctor said 20/20 so then that's when I made the appointment with my family doctor and then neurologist.

You know what my grandmother mentioned. I drink about 2-4 diet cokes a day for about 15 or so years. Do you know that they have what's caused "formaldehyde poisoning". It says to go without aspartame for 60 days and see if symtoms improve. I am going to try that too. What do you think? Thanks
deleted_user
deleted_user
I have read aspartame can trigger headaches as can many other foods. More more you look into the this and gather more info and opinions you will be both enlightened and confused. Stopping the nutrasweet for a while is a good idea.
deleted_user
deleted_user
I thought that this verse might be helpful, especially on this joyous Easter holiday. Paul
For God has not given us a spirit of fear, but of power and of love and of a sound mind.
2 Timothy 1:6-8
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