The ONLY thing that even helps a little is some form of opiate. I am probably addicted, but no one seems to care, listen or understand that I hurt EVERYDAY!!! I am tired of hurting and want to end it. I am too much of a coward to end my life so I just prolong the agony. I NEED HELP. More specifically I need a caring DR in Nashville, TN who doesn't mind writing certain prescriptions.
It is that or nothing. I don't think life is supposed to be this way. If so, I'm in hell already.
---Elizabeth Taylor Mystique@relia.net
My name is Doug and I've been suffering form Migraine headaches since I was a teenager. I am now 44 years old. In October I started to get headaches every day. I would take Imitrex for them and they would go away. I started to think that these might be rebound headaches from the Imitrex so I started to take Feverfew capsules (340 mgs.) six times a day ( if one is good two are better). I also took DHE 45 for the migraines rather than Imitrex. After a week or so I woke up at 3:00 a.m. with ringing in my ears. It was predominately in my right ear. By the morning the noise would die down to a soft hiss. Then 5 to 7 days later the same thing happened. Again the ringing decreased in volume by the morning. Then 5 to 7 days after that at 11:30 p.m. before I went to bed the ringing started and has not stopped since. That day I had taken DHE 45 at 4:00 p.m. as well as the feverfew capsules. At first it was a constant ring and I would also hear my pulse as a ring. In the over four weeks since this event it has decreased in severity. Instead of a constant ring it is now a pulsing ring. At night it will decrease in volume so that the pulsing ring is almost gone and there is a hissing noise which is at a lower sound frequency. If I put my chin to my chest the sound gets loader. If I raise my chin to the ceiling the sound gets softer. In any of these positions if I push my jaw outward the noise gets softer. If I tilt my head to my left shoulder the sound comes out of my right ear more. If I tilt my head to my right shoulder the sound comes out of my left ear more so. I've been to several doctors (ear, nose & throat) and they say they have no idea what is causing this pulsatory tinnitus. I tell them about all the symptoms and how I can increase or decrease the volume and they say it all means nothing and that they have no idea why the ringing behaves the way it does. I have been given an MRI of the carotid area and that checks out normal. I have also been given a hearing test and I have no hearing loss and my middle ears check out fine. I feel that by my describing all of the symptoms that some doctor somewhere must be able to pinpoint what might be wrong. If you have any answers please let me know.
P.S. Before this all started I had a flu and pneumonia vaccination. A fact that the doctors also dismiss as fast as they can.
I also had a Pentalogy of Fallot Repair in 1981. So the list of pain meds I'm able to take is limited. I'm on Phenobarbital, which seems to help...and am on Inderol..as well as Norethin. I've tried Imitrex, but it didn't even touch it. Phenergan and Demerol use to help, but I've gotten too use to them. In 1994, I was going every week to the ER. A couple of weeks I had to go in 3-5 times. Tried everything on me, nothing worked... not even Midrin. Only thing that did work was homeopathic meds, but I had to be taken off of those. They even tried Depakote on me, but I'm not sure if it had worked or not. I try so hard to forget about those years.
Thank you for listening,
---Elizabeth Taylor Mystique@relia.net
Reading all of these stories is bringing back memories that I had forgotten. I had migraines in High Scool. They were diagnosed when I was 15 or 16. They light, noise and crowds had always bothered me. I was a bookworm and kept to myself (quiet) but never put 2 and 2 together until I was diagnosed with Migraines. I went through a series of medications, nothing worked. My MD set an appointment up at the Diamond Headache Clinic in Chicago for me. After prom we left North Dakota and went to Chicago for my appointment. Problem was when we got there they could not due any tests because I was 3 months pregnant at 17. We had told them before we cofirmed appointment and they said they could still do the tests because the EEG and CT Scan had already been done. All they did was the diagnostics. Unfortunately, now I do not have any of those medical records around and the MD I saw is no longer working in ND. I haven't yet tried the Diamond Clinic to see if they still have the basic diagnostics that they ran on me. They had diagnosed Migraine and Cluster Headaches both and that was why I was not following the "classic" symptoms and durations and frequencies and all that garbage. When I got pregnant the headaches went away. I rarely get a True Migraine anymore. It is usually a stress headache or a muscle headache due to a car accident 3 years ago. Those contraction headaches are daily these days added in with stress of something being medically wrong and the doctors telling me that all the tests are normal it must be stress. They are the biggest cause of my stress because I am tired of living with the questions all the time on what is wrong. But this is not about me tonight. I am writing about my Daughter Deanna.
My mother has had some Migraines when she was in her 20's and 30's very few and far between. Now as she gets older i think she turns 52 today, not sure. She is getting them quite often and worse than she ever remembers. And I have one cousin (that I know of) with sever migraines on my mothers side.
My daughter wants to be homeschooled because of the stress she is feeling at school. I am in a situation where my mother can do this for me while I work and I have agreed to let her try it. She starts in January. We are now living in California and dealing with California Care Blue Cross - HMO. Whoever invented the HMO should be shot. Deanna's hand started shaking 3 weeks ago. Grandma took her into the MD's PA because he had no openings for 3 days. The PA said that it was stress related and not to worry about it unless it got worse then bring her back in. She starts counseling on Monday. So she wrote it off as stress. The shaking will last about 10 minutes once or twice a day.
Then a week and a half went by. She started shaking for a half hour on a Saturday night. There was no stress anywhere on this week-end other than worrying about the shaking. Then on Sunday morning she started shaking for a solid hour. We drove the 1 hour to Urgent Care (the hospital in our town is not covered under the HMO and isn't fit for a dog in my opinion even if it was). The Dr. there didn't believe it was stress. But didn't think it was very serious either. (of course she quit shaking in the Lobby waiting to see the DR). Ordered a full blood panel, CBC, Chem Panel, Smg (magnesium), TH4 and THS (thyroid - I am on pills daily). but they're lab was not open on Sunday we would have to wait till Monday to have it drawn. She would also put in a referral for an EEG but it would take 7-10 days. I was so upset that I wasn't thinking straight and said ok.
That night D shook for 2 hours straight. Violently - but only her arm 97% of the time, their have only been a few times when it was her head only.
So Sunday night after the HMO's Urgent Care closed we went to the Hospital and the ER Dr. saw her. He actually saw her shaking and has the same opinion about the HMO we are on. He ordered a CT Scan but expected it to be Clear. It was. So after 3 hours he sent us home and told us to get the EEG done ASAP. He figured it was seizures.
Monday Grandma got on the phone and raised a little ##@%#*! and the referral was changed to ASAP. What she forgot was that in their terminology ASAP is 3 to 4 days not immediately. 3 to 4 hours is considered STAT. I called that afternoon asking what happened to the referral and the gal informed me that it was approved and she was typing it now. She did not realize that it should have been STAT. Then I call the Neurologist they approved and they have to have it in writing before they can set an appointment. I call the gal back and she says that it will be an half hour to an hour before it can be printed. After threatening to Sue they faxed over the hand written notes for approval and an appointment was set for the next day. for the EEG.
When we got there we found out it was only for the EEG and not for the Nuerologist and we would not have the results till the next day. Sunday she only had 7 episodes and Monday was 2, Tuesday when she had the EEG was probably 4. That night we had one last about 2 hours again and her throat started to hurt and her voice got real raspy. We flew the car down to the Hospital and she ended up seeing the same ER Dr., he woke the Nuero up at 1:30 to ask what should be done. They gave her a shot of phenobarbital and sent us home with a prescription. Also, we were suppose to get her into the Nuero STAT.
Needless to say I played phone tag again. The Urgent Care nurse got the referral done that morning and she saw the Nuero that afternoon. (our primary care physician never did return the call to do the referral - I had left a phone message). Got her to the Nuero and we still had no EEG results on Wednesday they are now saying no results until Friday. The Nuerologist that did the EEG was not the same one that could get her in on the same day, it was his brother. Their offices were around the corner from each other. He walked over to the other office and came back and said the EEG was normal and didn't show anything.
* Shaking arm will start 10 minutes to 2 hrs. and 15 minutes * Arm quits, hot and cold for 20 to 30 minutes
* Hot and cold quits, Headache starts, power of putting thoughts into words starts She is in the 5th grade but starts talking in a 2nd or 3rd grade vocabulary.
* Speech lasts about 30 minutes.
* Headache lasts all day except when shaking, Severity and intensity changes.
* Can be nausious anytime after hot and cold. Rarely vomits.
Neuro is saying definitely not seizures. He is calling it MIGRAINE HEADACHES. Now I have never heard of any body with Migraines having uncontrollable shaking of one body extremity before. She is now shaking even when she sleeps that started on Tuesday night. She really has us scared. The Neuro put her on 3-30MG Tablets of Pheobarbital at bedtime. This is a sedative and should put her to sleep. She gets very "drugged" and gets drowsy for short time, then really scared but can't say why, and then hyper. She talks a mile a minute and doesn't know what she said. Memory is at a loss. But she does remember the shaking and does all normal activities with the shaking. Minus going to school because she is scared of what the other kids might say if they see her shaking. I am not sure what to try next. The Med is calming the shaking to a trembling 60% of the time but this fear it brings on is something else.
Anybody with any suggestions or help would be appreciated. Has anybody ever heard of this shaking before?
So here's my questions, 1) When you're life is in turmoil-marriage is falling apart, you are moving yet again to a place you know nobody, what do you do to help bring your stress level down? 2) Also, any suggestions for how to get help when you're on the move a lot? Right now I'm in the market for a doc in Bellevue area of WA. Any suggestions would be appreciated. 3) If I'm out of state, trying to drive cross country, what do I do if I need help for a migraine? This is no joke. I got my last migraine after a "discussion" with my husband as we were boarding a flight. Try getting a migraine on an airplane. All I could do was cry and yet sit there like a stone-I couldn't even speak. E-mail me at CAHRAH@aol.com. I used to have a different e-mail address until my husband started reading my e-mails. The accusations flew.
My chronic migraine condition started Sept. of 95 and I've been on many different preventative drugs. I'd give myself a shot of DHE-45 a couple times a week back then for the pain or I'd take anaprox. The fall of 93 I underwent a hysterectomy and did well with my headaches until 9/95. In 1995 I developed mononucleosis and from there all this started. I've always been a migrainer but they were controlled by elavil. Since May of 97 my daily pain has lessened quite a bit because finally a preventative helped ease the pain. I'm on 80 mg. of pamelor a day. I wanted to write to see if anyone experiences motion problems with their migraine condition. I've had the motion problem since the beginning but now since my pain is less the motion has gotten much worse. I'm pretty much housebound always. I'm under Johns Hopkins Hospital's care in Baltimore and they seem to be having difficulty regulating this motion problem too. I'm very desperate to hear if anyone would have any suggestions on this part of it. I've done acupuncture, accupressure, vitamin therapy and had cervical disk surgery for a herniated disk all with no improvement.
Have your headaches been controlled? I'd appreciate having my message put on the internet to see if anyone could shed some light to my situation.
Have a happy holiday season and thank you for listening to my story. Take care.